tag:blogger.com,1999:blog-75043982891669297702024-03-19T04:46:26.363+00:00My Boy With AutismI blog about my life with my child who has Autism, severe learning difficulties, poor communication, Epilepsy, and OCD. Born in 2002, he has become so much more than just a label.
I write about our life ; the ups and downs, the triumphs, the joys, and anything in the news (about disabilities) that has caught my eye.
He is the eldest of three. My youngest has Nystagmus, a mild speech disorder, and a very mild Sensory Processing Disorder.
*Thank You For Stopping By*
Unknownnoreply@blogger.comBlogger367125tag:blogger.com,1999:blog-7504398289166929770.post-61860529208300723372019-08-02T11:57:00.002+01:002019-08-03T16:08:04.272+01:00The Journey We Take From Denial To AcceptanceI consider myself lucky to be where I am in regards to acceptance of J. I took several stops off at self pity, denial, regret, anger, and wanting to give up. It has taken years to be where I finally stand, and years to be able to say that I fully accept J for what he is, who he is, and the future he has.<br />
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Along my way I have met many parents who have stopped off at the same place as I was at, or were a few stops behind or in front. Some parents were at the end and were happy and accepting. I looked at them and couldn't see myself being in that place.<br />
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I visualise this journey through emotions as being on a map, with various stop offs, but with the end of the journey nearly always being the same destination - acceptance. Sometimes you go back a stop, jump to the next one, miss one out completely. It's not always a straight line from A to B.<br />
The stop offs may not appear in the same order for you either, this picture I've created is a way to demonstrate visually what I am attempting to write.<br />
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When I was at the denial stage, I hadn't really heard much about autism, and would excuse J's behaviour ; never wanting to sit down with the other children at snack time, or want to join in with them at sing and rhyme time (at toddler groups when he was 2-3 years old) - I'd say he was a late talker, or liked to be independent.<br />
One mum at the toddler group matter of factly asked me if he had autism, and I immediately replied "no"! I didn't have a clue really, but was aware she was talking about a disability, and I denied it. I didn't want to face facts that he <i>did</i> have difficulties, and that I <i>was</i> worried.<br />
That defining moment still lives with me. I remember it clearly. I remember how I felt. Having someone else point out what I was internally worrying about, created an avalanche of emotions, and I became buried even deeper in denial.<br />
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We were sent for a hearing test, a kind of 'par for the course' routine test that is done, to initially rule out hearing loss to be the cause of the lack of speech development and communication.<br />
Here again, I sat in denial, amongst children that were a lot like J, and for whom I could hear the parents talking about autism, and I could see posters up on the walls giving guidance for suspected autistic children.<br />
He doesn't have autism. Nope. He's just a late developer. He's my first born.<br />
If I had a £1 for every time someone back then told me about Einstein and the fact he didn't talk until he was 5 years old, to complain about his porridge (or something like that), and when asked why he had never spoken before, he replied, "because my porridge has always been fine before", I'd not be rich, but I'd have a money jar full to the brim.<br />
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The hearing results came back as fine.<br />
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It was a few months later when we had a paediatrician appointment, which had been arranged by our GP, that I was to be given a diagnosis, that was made after a thirty minute meeting with the paediatrician.<br />
She handed me a leaflet, not a booklet. It was a folded piece of A5 paper, that talked about autism, and our newly diagnosed child.<br />
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You know when you're in your own world, thinking, or maybe on the phone, and you walk slap bang into a glass door, or cupboard, not realising it was there, because you weren't concentrating. It was like that..............<br />
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That was what I liken this experience to. Coming out of the denial fog and seeing this sign right in front of you...... <br />
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I was dazed. Confused. Shocked. In this little leaflet it told me how my life was never going to be the same again, and that my child would depend on me forever.<br />
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At home, and before Google and easy access to the Internet, and not wanting to believe the diagnosis, or the leaflet, I got out my old family medical journal. Under autism it had a short paragraph, that informed me that my child would never be independent, never drive, marry, live alone, would be a danger to himself, socially inept, a loner.....<br />
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We moved very soon after, to a new area, and at the new GP surgery I was told that they do not make such sweeping diagnoses' within one appointment, and that it will take a year of regular observations, from professionals, before they would give out such a diagnosis.<br />
That gave me some hope as I was still lingering in denial.<br />
I had begun to dip my toes into regret as well though. It had to be my fault. I probably didn't talk to him as much as I should have. I didn't interact with him enough. One person, who shall remain nameless, once told me that it <i>was </i>my fault, as I was the only one with him all day, every day, and so it was down to me. I caused it. That comment still hurts me to this day. Still rattles about, niggling me, but, as I have learnt so heartily over the last decade, you can't live in the past.<br />
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Over the coming year, we attended a weekly session along with other children of similar ages.<br />
There were play assistants that interacted with the children, and it was just like a playgroup/nursery setting.<br />
There were parent lessons that we attended during this time. We watched videos, were taught from text books, and talked about our children. It became patently clear to me that he was indeed on the spectrum, or had a severe learning difficulty.<br />
At the end of that year, there wasn't really a big grand 'ta-da' moment. It had built up, trickled in, flicked the light switch on in my brain. So there was never a big build up to them telling me. They knew I knew.<br />
It was from here that they suggested a special school, I went to visit, fell in love with it, and a whirlwind of him being given a Statement of Special Needs (required in the UK to be able to attend a special school or to get extra help in a mainstream school), and him starting as a 'preschooler', attending a few mornings a week, several months before he was able to start in the new school year at the recommended school starting age.<br />
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I have bypassed going in depth about the dreadful mainstream playgroup he attended during his one year observations, as it was truly an awful experience for him and me. Their special needs assistant had no empathy, care, or desire to want to help J. I removed him within a few months, after many promises of them trying harder. It was not J at fault, it was them. They were an awful childcare place. I will probably write about them in a future posting.<br />
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Around the time J was being assessed, he began to be destructive within the home. He also developed complete terror at me leaving the house without him. I couldn't even go outside to the main bin to empty the kitchen rubbish, without him screaming and crying.<br />
The destructive behaviour he displayed at home resulted in him smashing every cup, plate, mug, lights, lamps, tipping over bookcases, opening drawers and emptying them all over the floor.... in the end we stopped replacing items and used paper plates, plastic cutlery (because I didn't feel comfortable having regular cutlery around in case he used it against me or himself) plastic cups, we had no lights (as smashed glass from bulbs is no fun to step on), and I stopped trying to put everything back on shelves and in drawers, as he would do this several times a day. It was exhausting. I was at a very low ebb. I fell into self pity. I wanted to give up. I mean, I<i> really</i> wanted to give up. I spoke to someone about perhaps having him removed from me, as I was obviously not coping with him, and I wasn't able to help him stop. I was useless, I believed.<br />
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I remember attending a family birthday meal at a restaurant, and J acted up, with people from other tables staring and tutting, and I had to leave. I sat in my car, with J, and my Uncle D came out and sat with me. I just cried and cried. I had never shared with any family member just how hard it was for me, and how hard I found it all.<br />
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One day though, it all stopped. As another destruction free day ended, I tried not to get my hopes up that it was the end. But the days turned to weeks, and it had just stopped, as swiftly as it had all started.<br />
He was happier, I was happier. My self pity gradually disappeared, and I began on the long road of regret.<br />
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I would spend my time pouring over possible causes for his autism/learning difficulties, and I could identify with a few possible reasons as to why it was my fault he had a disability. I had a huge craving for tuna fish during early pregnancy, and there were no mercury warnings back then, or advice to restrict your intake during pregnancy as has emerged over the last decade.<br />
His birth was long and traumatic, and I don't believe the care he or I received was adequate. I was treated with no respect, and as it was my first labour and delivery, I wasn't listened to when I became worried. They knew better than me, or so I was told. It ended with him becoming stuck. He was pulled from me with such force that the doctor was shouting at me to push, despite me having no contractions, and damage was caused to J's head, as well as me (no need to explain where and what that was, it's obvious). As well as J being poorly and requiring oxygen and resuscitation, I had to be dealt with for a few hours afterwards and was close to having a transfusion.<br />
I did have moments of anger when reliving what occurred during those 39 hours. When no-one is listening to you, and dismisses you as a stupid first timer, I feel anger at myself for not being more forthright and demanding. That was where I directed my anger, at myself. I have fought through depression, have a huge weight issue, and all because I internalise and hate myself for not helping him when he really needed me to. For me, that has been, and still is, the hardest thing for me to overcome.<br />
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Regret lived with me for many years. Guilt and regret. It has taken me a long time to put that to bed.<br />
I went through much sadness over the way J wouldn't be able to experience marriage / a partner, children, work, driving, independence, and all the usual expected milestones of life.<br />
I flipped the negativity about his disability, and turned it into positives.<br />
J has never, and will never be prejudiced towards others. He doesn't see hatred.<br />
He views nature as a most wonderful thing, and can spend hours wandering around a forest, sitting under trees, listening to wildlife, dancing around as the rain falls on his face, and finds peace.<br />
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I don't remember the day or even month that I emerged from regret and became fully accepting of J and his disability. It just happened. I had no more fog clouding my thoughts. I could just see this perfect boy, with a big smile, loud giggles, and who was bouncing and dancing his way through life.<br />
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I 100% accept J for who he is.<br />
He is settled and happy at home. I do not make unreasonable expectations of him. The house runs fairly smoothly, and he doesn't get stressed over much. I understand him. I understand his noises. I know when a noise means he's in pain or is scared (like when he loses a tooth, I now recognise the noise of panic he makes at the moment it comes out). I know when he makes a screeching noise, it doesn't mean he's in trouble, it's his happy, playful noise.<br />
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I don't feel regret for him any more.<br />
I know he will always be with me, and I am making plans for the future, when my other two children are off out in the world, making families and memories of their own. J and I will go off travelling around the country in a big camper van, or ideally one of those big American motor homes - I love those. He loves travelling. He adores nature. We'll visit many places, and have fantastic trips away.<br />
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Going back to the picture I made about the journey we make, when you're feeling low, or alone, remember that there is always another parent at that same place, feeling equally alone, lost, confused. If we all extend a little more kindness and empathy, we could all find an easier way to travel along this route.<br />
I can state categorically that you will meet some amazing parents, who have their own stories to tell. You will make some lifelong friends. They will be there for you, with a sympathetic ear, shoulder to cry on, and a knowing nod. Advice is swapped without fear of being admonished.<br />
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If you are in any doubt whatsoever, I am wholly, truly, totally in love with my Boy. He is amazing. He makes me proud. He makes me smile. He has made me a better person.<br />
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And just in case you still feel alone, just remember this......<br />
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Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-7503253145900255912019-08-02T11:04:00.002+01:002019-08-02T11:11:30.638+01:00Communicating What He Wants By Writing Over the years, J has had numerous 'magnetic drawing boards' which are a progression on from the 80's sketch boards called <a href="https://amzn.to/2ZsWKRa" target="_blank">Etch A Sketch</a>. Do you remember these? You could only control the movement by dials, so drawings were harder to do, and frustrating if you went wrong.<br />
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<tr><td class="tr-caption" style="text-align: center;"><a href="https://amzn.to/31kqzEn" target="_blank">Etch A Sketch</a></td></tr>
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Around 12 years ago I found a really good brand of new style magnetic drawing boards, and have stuck to them ever since.<br />
Every year he receives a new one as a present at Christmas, and he still loves to use them to communicate with me. He only ever really asks for food to eat, or food he wants me to order in the shopping basket online, or describes where the food he likes has been put.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuDYvNx56ERYYxqAtZIKrGduEfCiacx7UzMqE4emnGe0Nl-dkuIpDrzhTyfQZdkYyFPipaUvAj0YbaFswpPUGUEFAHQKlCDfNuSPPW0SI9Hbo4wkZPsrMO_VJDsQ_0Lc4mVffgX5mu_wpz/s1600/my+boy+with+autism+mega+sketcher+nystagmus+blog+post.jpeg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="223" data-original-width="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuDYvNx56ERYYxqAtZIKrGduEfCiacx7UzMqE4emnGe0Nl-dkuIpDrzhTyfQZdkYyFPipaUvAj0YbaFswpPUGUEFAHQKlCDfNuSPPW0SI9Hbo4wkZPsrMO_VJDsQ_0Lc4mVffgX5mu_wpz/s1600/my+boy+with+autism+mega+sketcher+nystagmus+blog+post.jpeg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="https://amzn.to/3367I1c" target="_blank">Tomy Megasketcher</a></td></tr>
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The brand I use is called <a href="https://amzn.to/3367I1c" target="_blank">Tomy Megasketcher</a>, and they're hard wearing, bright, and fun to use, and all my boys have played on them over the years.<br />
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I've been collecting photos of what he's written for the last few months, and here are a selection of the ones he's brought to show me - he wants me to photograph them, and waits while I find my phone, and then wants me to take a picture. He reads out what he's written, and I know this is his request for what he'd like!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFfdhdMligptvNBShpDinoqz6b0-e_YhAphAALAUf4lktiWDgb7DSsJkMTffzOrpidGo7ZKC7pTGmTlchNYNGmm-Oqu5yGe5QaSK8yc-7w7pdoCuF9UqAW8drr2Cq39DaTYnT-EX8ybgrS/s1600/ice+cream+my+boy+with+autism+blog+nystagmus.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="542" data-original-width="750" height="231" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFfdhdMligptvNBShpDinoqz6b0-e_YhAphAALAUf4lktiWDgb7DSsJkMTffzOrpidGo7ZKC7pTGmTlchNYNGmm-Oqu5yGe5QaSK8yc-7w7pdoCuF9UqAW8drr2Cq39DaTYnT-EX8ybgrS/s320/ice+cream+my+boy+with+autism+blog+nystagmus.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: small;">He's asking for an ice cream known as a Strawberry Cornetto, that comes in a box of four.</span></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXoU7lyT8yysXmfgb9HmzyBLsyVu6JOD5ONQIpA-2SwUqn6ThsQOBDPA4nL03qDdkLT-Rr6idatwvv-dNsfyZI_BsumOzw1YbEODOuqqxLD8j82E-TAT2vLAmg8k27RQXVc-2LMPODXoNI/s1600/lunchbox+autism+nystagmus+my+boy+with+autism.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="914" data-original-width="750" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXoU7lyT8yysXmfgb9HmzyBLsyVu6JOD5ONQIpA-2SwUqn6ThsQOBDPA4nL03qDdkLT-Rr6idatwvv-dNsfyZI_BsumOzw1YbEODOuqqxLD8j82E-TAT2vLAmg8k27RQXVc-2LMPODXoNI/s320/lunchbox+autism+nystagmus+my+boy+with+autism.jpg" width="262" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: small;">This is a drawing of the packed lunch that he takes to college. He's drawn and written ; his water bottle, a custard pot, a pot of sliced cucumber, a sandwich, a packet of crisps, and a chocolate bar. </span></b><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOsEQF30nRQYegffFwlvf8cDk1bUh-IwSoLn8HM7lVblStTM3Rfune1UNZePaCN6yidbLSCWYaQy9MKJ6cAjFqTUPOXrOPk5KtatxogGi2Ehi4YK8ig6NFMPFsCL5m_29GGRL_YEGko0af/s1600/jaffa+cakes+my+boy+with+autism.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="477" data-original-width="750" height="203" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOsEQF30nRQYegffFwlvf8cDk1bUh-IwSoLn8HM7lVblStTM3Rfune1UNZePaCN6yidbLSCWYaQy9MKJ6cAjFqTUPOXrOPk5KtatxogGi2Ehi4YK8ig6NFMPFsCL5m_29GGRL_YEGko0af/s320/jaffa+cakes+my+boy+with+autism.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: small;">I've written before about his love of Jaffa Cakes. This was a request for the yard stick of Jaffa Cakes that they only sell around Christmas.</span></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyZxJgY2LuF_Dxt17Uy4V8JhkktdtDEoKY4CZCExi9ZrW38hbAD8w_K3CzE7x5uAWa-5QpUdZZb1YdGfcxflSE9d_loQHHcLAHMECSyaIxAWgVNfGxv5_Z36IaANAbQ-UI7-tk8SQZAgNS/s1600/autism+blog+my+boy+with+autism+nystagmus.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="642" data-original-width="856" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyZxJgY2LuF_Dxt17Uy4V8JhkktdtDEoKY4CZCExi9ZrW38hbAD8w_K3CzE7x5uAWa-5QpUdZZb1YdGfcxflSE9d_loQHHcLAHMECSyaIxAWgVNfGxv5_Z36IaANAbQ-UI7-tk8SQZAgNS/s320/autism+blog+my+boy+with+autism+nystagmus.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: small;">In the UK we have chocolate biscuit bars called 'Penguins'. I have to lock away all the foods J likes to gorge on, in specially made drawers in my kitchen, and this was his way of telling me what he'd like and where they are.</span></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFmbwQo0xxCiWl-sJo3V9vlBobVF1hXB2NT_pV9FHOIzEqzQfLFTnOFgcv8oSKmoK9DCXvY7hV1pGDlXfD5u3jk5W2hR2dG0MszodUshmV87M8Gu1OLl9_OMZoaLYW2gZylKQDHCNswMhz/s1600/blogger+autism+my+boy+with+autism.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="538" data-original-width="960" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFmbwQo0xxCiWl-sJo3V9vlBobVF1hXB2NT_pV9FHOIzEqzQfLFTnOFgcv8oSKmoK9DCXvY7hV1pGDlXfD5u3jk5W2hR2dG0MszodUshmV87M8Gu1OLl9_OMZoaLYW2gZylKQDHCNswMhz/s320/blogger+autism+my+boy+with+autism.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: small;">He loves hash browns, and they come in packs of 14. He's asking me to add two packs to the shopping list!</span></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLOsS_nMxv_sS-TFYo4clk5bIh8DIzcO9qnML3y4wLA3wyVwOcyCr1cAZef8EqePaJODUAtlrjSQaYEujC4p42rDyw2XcWfMAL4bWpshz-rI-9hhk1qOd0YbHRx1D3MYh3VJNv4pI0jVTt/s1600/toast+autism+my+boy+with+autism.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="917" data-original-width="750" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLOsS_nMxv_sS-TFYo4clk5bIh8DIzcO9qnML3y4wLA3wyVwOcyCr1cAZef8EqePaJODUAtlrjSQaYEujC4p42rDyw2XcWfMAL4bWpshz-rI-9hhk1qOd0YbHRx1D3MYh3VJNv4pI0jVTt/s320/toast+autism+my+boy+with+autism.jpg" width="261" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: small;">He's describing how I cut his toast up - into 4 pieces.</span></b></td></tr>
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There are a lot more of these I could show, but it'd be repetitive and you get the gist!<br />
It's great that he can communicate with me by this method, but he doesn't get what he requests all the time!Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-27076054803950433152019-08-01T21:34:00.000+01:002019-08-02T12:03:11.705+01:00First Introductions To Autism <span style="font-size: large;"><b><span style="background-color: #fff9ee; color: #222222; font-family: "georgia" , "utopia" , "palatino linotype" , "palatino" , serif;">Going back to the very start of my introduction to autism, when I was handed the leaflet from the very first paediatrician we saw, it all seemed unreal and didn't make any sense.</span><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><span style="background-color: #fff9ee; color: #222222; font-family: "georgia" , "utopia" , "palatino linotype" , "palatino" , serif;">My child, my first born, this little boy with his blonde hair and blue eyes, who never tried to speak, who everyone had said was just a bit behind, suddenly had this disability which was hard to comprehend, and made me feel lost in a country where I didn't speak the language or understand the customs.</span><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><span style="background-color: #fff9ee; color: #222222; font-family: "georgia" , "utopia" , "palatino linotype" , "palatino" , serif;">The leaflet was scant with information and it never really dawned on me the actual reality of autism. As mentioned, before I got out my trusty medical journal to find more information, but that too was a paragraph of daunting words that gave me a hard hitting smack in the face that this was not going to get better with a little speech therapy.</span><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><span style="background-color: #fff9ee; color: #222222; font-family: "georgia" , "utopia" , "palatino linotype" , "palatino" , serif;">Over the years, but more so at the start, I bought books on the subject. These books came with glowing recommendations on the jacket sleeve but to be honest, they were way too information packed with no personalisation, real stories, and a very bleak outlook.</span><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><span style="background-color: #fff9ee; color: #222222; font-family: "georgia" , "utopia" , "palatino linotype" , "palatino" , serif;">One book I did buy was called <a href="https://amzn.to/2Yp1T0s" target="_blank">George and Sam </a> ( <a href="https://amzn.to/2Owa1Y9" target="_blank">George and Sam US</a></span><span style="background-color: #fff9ee; color: #222222; font-family: "georgia" , "utopia" , "palatino linotype" , "palatino" , serif;"> ) and became my new best friend.</span></b></span><br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEityzZ-B_aYIuGOLp-pyB9Gi-b9vQSDZ6I_ZXSY85n-hJXvYmHUWNeF_UP1d_wIIMpBa8Hx6z6zBpbGl4WNrnce_YlosrYmb8zEGzHzu1cj4pQZLyl8Xuxq_PrIayiPvw0HoVkZiJwhqgc0/s1600/george+and+sam+my+boy+with+autism+blog.jpg" imageanchor="1" style="color: #888888; margin-left: auto; margin-right: auto; text-decoration-line: none;"><img border="0" data-original-height="430" data-original-width="400" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEityzZ-B_aYIuGOLp-pyB9Gi-b9vQSDZ6I_ZXSY85n-hJXvYmHUWNeF_UP1d_wIIMpBa8Hx6z6zBpbGl4WNrnce_YlosrYmb8zEGzHzu1cj4pQZLyl8Xuxq_PrIayiPvw0HoVkZiJwhqgc0/s320/george+and+sam+my+boy+with+autism+blog.jpg" style="background: transparent; border: none; box-shadow: rgba(0, 0, 0, 0.1) 0px 0px 0px; padding: 0px; position: relative;" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.32px;"><a href="https://amzn.to/2Yp1T0s" style="color: #888888; text-decoration-line: none;" target="_blank">George and Sam</a></td></tr>
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<b><span style="font-size: large;"><span style="background-color: #fff9ee; color: #222222; font-family: "georgia" , "utopia" , "palatino linotype" , "palatino" , serif;">This book was written by a mother with three sons, and two of them have autism, with differing levels each.</span><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><span style="background-color: #fff9ee; color: #222222; font-family: "georgia" , "utopia" , "palatino linotype" , "palatino" , serif;">This book was interesting, made me smile, and allowed me to see I was </span><em style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;">not</em><span style="background-color: #fff9ee; color: #222222; font-family: "georgia" , "utopia" , "palatino linotype" , "palatino" , serif;"> the only one going through the shock of the diagnosis, the sharp learning curve of the behaviour issues and the hard truth that there is no cure, miracle or otherwise.</span><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><span style="background-color: #fff9ee; color: #222222; font-family: "georgia" , "utopia" , "palatino linotype" , "palatino" , serif;">I find that with the 'education' books they focus on the more negative side and not the fun side, the loving side and the way that autism is not an end to everything, rather a beginning of a new life and way of thinking.</span><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><span style="background-color: #fff9ee; color: #222222; font-family: "georgia" , "utopia" , "palatino linotype" , "palatino" , serif;">And of course, as all mums with children/adults with autism will tell you, every child with autism is unique. Autism is, as the terminology states, an 'umbrella' and a 'spectrum' and therefore is different in each child. There are familiar traits and tell tale signs, but what one child may struggle with, another sails through.</span><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><span style="background-color: #fff9ee; color: #222222; font-family: "georgia" , "utopia" , "palatino linotype" , "palatino" , serif;">I hope that through this blog, parents out there who are perhaps at the start of the journey (and really this is a proper journey and not the ones that contestants on X Factor bleat on about), or maybe having a bit of a down day, can have a laugh at the antics of my J, the way I deal with issues that arise and see that even though autism can be very solitary, there are tens of thousands of us out there on the same solitary path but all inter-connected together.</span><br style="background-color: #fff9ee; color: #222222; font-family: Georgia, Utopia, "Palatino Linotype", Palatino, serif;" /><span style="background-color: #fff9ee; color: #222222; font-family: "georgia" , "utopia" , "palatino linotype" , "palatino" , serif;">Something a book written by a doctor/paediatrician/specialist will never truly understand, unless they too are on the personal path of this disability.</span></span></b>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-27162932731585147332019-07-30T19:37:00.002+01:002019-07-31T08:10:59.797+01:00Nystagmus - Overdue Update Of My Youngest SonIt has been a very long time since I updated about my youngest son, W, who has Nystagmus.<br />
If you want to read the previous posts I have written about him and his eye condition, you can click them here -<br />
<a href="https://myboywithautism.blogspot.com/2010/05/my-third-child.html" target="_blank">My Third Child</a><br />
<a href="https://myboywithautism.blogspot.com/2011/03/nystagmus-and-new-baby.html" target="_blank">Nystagmus And The New Baby</a><br />
<a href="https://myboywithautism.blogspot.com/2012/03/nystagmus-update-on-my-now-toddler.html" target="_blank">Nystagmus - An Update On My (Now) Toddler!</a><br />
<a href="https://myboywithautism.blogspot.com/2013/03/nystagmus-update-baby-is-now-three.html" target="_blank">Nystagmus Update - The Baby Is Now Three!</a><br />
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My little boy is now 9 years old! Where does the time go?!<br />
He is simply the most beautiful and kindest person I know.<br />
He still wears glasses, and the prescription strength has increased over time, but has been stable for around two years.<br />
The 'wobbly' eyes are still present, but the speed and rotation of movement have slowed down, and only really get worse when he's tired or upset.<br />
He has to have an eye test every six months at the hospital eye clinic, and he had genetic tests around a year ago, for a condition called Ocular Albinism. This does not affect his hair, eye, or skin colour, but could be the reason he has Nystagmus and low vision. I myself have Photophobia, which means my eyes become painful in bright lights, and this affects my night driving too, as I can get dazzled by oncoming vehicle lights. Photophobia is also a trait of Ocular Albinism, so there could be a link. We are still awaiting the results of the genetic tests.<br />
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Learning to read has taken more time, as a lot of books have print which is too small, or is buried amongst a lot of imagery, which can make it incredibly hard for his eyes to distinguish the text.<br />
At home I have been using the Oxford Reading Books, which I first bought when I was home educating my middle son. These are the books that I use - <a href="https://amzn.to/2SRT9tJ" target="_blank">Oxford Reading UK</a> or <a href="https://amzn.to/2LPz9Y2" target="_blank">Oxford Reading US</a><br />
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I have also sourced some brilliant 'flash' cards that are bold enough for him to read, and have meant I can assist in his teaching at home.<br />
These are the two Flash Cards I use at home -<br />
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<a href="https://amzn.to/2yr7AeN" target="_blank">Common Exception Words UK</a><br />
<a href="https://amzn.to/2YxxBUn" target="_blank">Common Exception </a><a href="https://amzn.to/2YxxBUn" target="_blank">Words US</a><br />
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<a href="https://amzn.to/2MwQHr4" target="_blank">First Words Flash Cards UK</a> and <a href="https://amzn.to/2SPLfAV" target="_blank">First Words Flash Cards US</a><br />
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His reading level is that of a 6 year old I think, so he is not doing badly at all, and with my input at home, as well as the amazing work his teachers do at his school, he will be proficient within no time at all.<br />
He can read common words with very little 'sounding out' ( c-a-t), and longer words are becoming easier for him to read, but he does sound them out more often, which is all a part of learning to read.<br />
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During his time at his special needs school, he has won two end of year awards - one for Sport, two years ago, and one for Maths, which was awarded recently.<br />
For both of these, he received a small trophy with his name, the date, and the category he won in. He was so proud of himself, as was I.<br />
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His Maths ability is fantastic. He has a very logical brain, just the same as his middle brother<br />
(who is 13 ), and they both find Maths an easy concept to learn.<br />
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There is always the thought that he should attend a mainstream school, as he has ability in a lot of areas, but he needs specialist input from the understanding and skilled staff at a special school to really help him flourish. His speech is still not 100% perfect, and he finds longer syllable words tricky to say, but his concept and understanding of words is exceptional. He amazes me with some of the tricky words he uses, and in the correct concept of the sentence.<br />
I would also oppose him attending a mainstream school as I am always concerned about the level of bullying that happens - he would be a prime target, with pupils taking his items away, and him not seeing them do it, and not able to find it, because of his eye sight.<br />
I know schools have to have an 'anti-bullying' policy in place, but bullying has always been around, and always will, and whilst schools can produce wonderfully worded policies, it will never be eradicated completely.<br />
Here in the UK, mainstream schools are over-stretched and filled to the brim in each classroom, so W would not get the individualised education he needs, and he would be 'lost' in class.<br />
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If I were ask W what the worst thing about having Nystagmus and low vision is for him, I'm pretty sure his answer would be the eye drops he has to have at his eye clinic appointments! He detests them. He has gotten better with them, but is still frightened, and I have to do a lot of talking and reassuring for the preceding week, and on the day. On one of the days he had that, around two years ago, he was so distraught when they were trying to administer them into his eyes, that he screamed and cried, for twenty minutes, until they finally got the drops in, and then he refused to talk to me for the rest of the day. As he is such a chatterbox (he gets that from me!), it was quite peaceful during his silence!<br />
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W does use a white cane at times when we're out and about, as in busier places, people can be very impatient and rude when he doesn't move out of their way, and he has been pushed by adults, with one incident that ended with him being pushed into a metal display unit in a pharmacy shop. We were in a queue to be served, and someone behind us decided to get irate that he didn't move forward three inches when the queue moved forward, so pushed W hard, and sent him flying into the shelving unit. With the white stick, the majority of people recognise what it represents, and tend to give him more room, with less impatience.<br />
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W has described his vision to me before, and one very insightful one was when he said, whilst standing at the top of the stairs - "it all looks flat to me. The ground isn't any different from the stairs, as it's all one level". What he's describing here is the occurrence of something called 'depth of perception'. When he was little, he would stop when he was aware a rug or carpet or flooring changed pattern under his feet, as he had to make sure it was flat, and wasn't a dip or rise that could trip him up or make him fall. When crossing the road, the kerb doesn't appear to him as 'going up' or 'going down', (but as a continuation of the road and pavement) but he's learned this, so is careful when stepping up or down.<br />
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To sum W up, I could use so many adjectives, and could write all day about his amazing ability to just be himself, despite his disabilities. I will be succinct however, and will say this - he is a bright, funny, intelligent, loving, kind, and thoughtful little boy, who I am so proud to call my son.<br />
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<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-5887570082151509902019-07-28T12:10:00.004+01:002019-07-30T17:17:20.723+01:0010 Year Old Boy With Special Needs Forced To List His Faults By Teachers<br />
I have read today about a 10 year old boy, who has ASD, ADHD, and ODD, who attends a mainstream primary school, and who has been subjected to a form of bullying by the very staff who should know better.<br />
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There should be no excuse for any mainstream school (or any school for that matter) to promote what they did as a way that will help children who have a special need, and it seems incredulous that these staff members actually thought this was a good idea!<br />
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So, what did this school decide was a great idea to implement?<br />
They requested this child's class mates to say aloud what they<b> dislike</b> about him, and then made him write all of their dislikes down on a drawing of himself, which was then displayed in the classroom, for everyone to see daily.<br />
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<tr><td class="tr-caption" style="text-align: center;">The picture and words that the child had to write, and had displayed in the classroom.</td></tr>
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This occurred last year, but has only come to light by the child's parents recently, as like most parents with children at school, we get all their classwork and pictures back at the end of the Summer Term.<br />
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I sincerely hope that the staff at this school reevaluate their reasoning behind their choices, and try to understand why their actions have been so widely criticised.<br />
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We should all be working towards a better understanding and acceptance of disabilities.<br />
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You can read more about the story <a href="https://www.theguardian.com/education/2019/jul/28/derby-primary-school-boy-with-special-needs-blamed-for-being-bullied" target="_blank">here</a>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-48930393335922859392019-04-03T20:25:00.000+01:002019-04-03T20:25:13.604+01:00World Autism Awareness Month <br />
A few days ago, my Blog turned 9. I know I scarcely write anymore, but life is full on, and when I think about sitting down to write, something else always crops up.<br />
Children have the uncanny knack of requesting food or drink, or help with their homework, the second you sit down with a cup of tea.<br />
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As we are now in April, I thought it was apt to post about Autism Awareness Month.<br />
Although April the 2nd is the official World Autism Awareness day, the whole month is for awareness.<br />
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A lot has changed in regards to the acceptance of autism amongst society, since I began my journey 16 years ago. However, we are still so far from being fully inclusive, accepting, kind, non-judgemental, and supportive of children and adults on the spectrum. </div>
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Thanks to drama shows on the television, books (that turned into plays -The Curious Incident of the Dog in the Night Time), <span style="text-align: justify;">celebrities who bring more attention to it (due to their own personal experience </span></div>
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of having children with autism), and the rise of social media giving platforms to everyone to highlight, talk about, and champion their children and adults, more and more people have an awareness, but this can be at times, a little frustrating, as there are so many facets to autism, hence the full name autism spectrum disorder, that albeit well meaning people can lump every person with ASD into one category, without<span style="text-align: justify;"> understanding that every person will have different quirks, needs, likes, dislikes, and level of ability. <div class="separator" style="clear: both; text-align: center;">
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If you use Facebook, and want to be a part of a friendly, chatty, helpful group of parents and carers who have a child or young adult with special needs - all special needs are discussed - then follow this link and join. It's free, and has over 1.2k members. It's highly moderated, and completely closed, so no one outside of the group can see what has been posted. Just click this link and join! >> <a href="https://www.facebook.com/groups/aspecialneedsforum/" target="_blank">The Special Needs Forum Facebook</a></div>
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<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-72315732074750484662019-01-08T21:09:00.001+00:002019-01-08T21:15:29.498+00:00Down The Pub?! <b><span style="font-size: large;">My Boy brought a work book back from College the other day, and it has writing and expressive words in it.</span></b><br />
<b><span style="font-size: large;">He uses PECS (Picture Exchange Communication System) to form a sentence, and at 16 he is still learning more symbols within the system.</span></b><br />
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<b><span style="font-size: large;">His teacher told me at our recent meeting that he was asked what fruit he likes to eat.</span></b><br />
<b><span style="font-size: large;">He was shown pictures of a variety of fruit, and he had to put each picture into either a 'yes' or 'no' column, to say if he liked eating them or not.</span></b><br />
<b><span style="font-size: large;">He put each item of fruit into the 'yes' column, and none into the 'no'.</span></b><br />
<b><span style="font-size: large;">When the teacher told me this, I knew what she was going to say next!</span></b><br />
<b><span style="font-size: large;">When seeing all the fruit he apparently liked to eat, she presented him with a piece of each, to eat.</span></b><br />
<b><span style="font-size: large;">His verbal response was a resounding "no"!</span></b><br />
<b><span style="font-size: large;">J doesn't like fruit. He loves vegetables, but fruit is something he's always shied away from.</span></b><br />
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<b><span style="font-size: large;">This task shows that J is still not comprehending the choice of 'yes' and 'no' when given the option.</span></b><br />
<b><span style="font-size: large;">It's something the college and I will be working on with him.</span></b><br />
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<b><span style="font-size: large;">In another page of his work book, he had written a sentence down, describing what he had done during the Christmas holidays. He is assisted with the words by staff, as he can copy the writing someone else does, but cannot write a sentence by himself. The process from saying something, to writing it down isn't there yet. I'm not sure he even understands that what he is copying down is what he's just said.</span></b><br />
<b><span style="font-size: large;">I hope you understand what I've tried to convey here - it makes sense to me, and I hope I've explained it clearly.</span></b><br />
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<b><span style="font-size: large;">This is what he wrote.....</span></b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaQ3zTgRGxFkU0Owe1qzmylbqqfX-FW8WfoXFBujNOs1n447yYlfqXOAJFnhgod4aKIBOvVQ91rop-WWsI_ebYup0VtV4JDTHIq-Rehl5n4TGQtywF3G2E0JjU294lQ1iNEax6KP1zfArj/s1600/50084470_10156418395066936_6207167455794561024_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><b><span style="font-size: large;"><img border="0" data-original-height="960" data-original-width="844" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaQ3zTgRGxFkU0Owe1qzmylbqqfX-FW8WfoXFBujNOs1n447yYlfqXOAJFnhgod4aKIBOvVQ91rop-WWsI_ebYup0VtV4JDTHIq-Rehl5n4TGQtywF3G2E0JjU294lQ1iNEax6KP1zfArj/s640/50084470_10156418395066936_6207167455794561024_n.jpg" width="561" /></span></b></a></div>
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<b><span style="font-size: large;">Now, bare in mind, he is 16. In the UK the legal age to drink alcohol is 18, but under 18's are permitted in a lot of pubs, but minus the alcohol consumption.</span></b><br />
<b><span style="font-size: large;">We didn't visit a pub of any description, and it made me laugh when I read it.</span></b><br />
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<b><span style="font-size: large;">Does he want to go to a pub, but can't tell me?</span></b><br />
<b><span style="font-size: large;">Probably not.</span></b><br />
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<b><span style="font-size: large;">I think he was asked what he did over the holidays, and he replied "park", as he loves to go to the local playground and play on the swings. I believe the way he said "park" was misconstrued as 'pub' and he was given the words to write down.</span></b><br />
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<b><span style="font-size: large;">The second part, where he says his favourite present was chocolate, is true. Absolutely no doubt about that at all!</span></b><br />
<b><span style="font-size: large;">He received various chocolate gifts, and they were eaten in under 20 minutes flat.</span></b><br />
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<b><span style="font-size: large;">He also received a yard stick Jaffa Cake tube, which had four boxes of the cakes (biscuits?) in.</span></b><br />
<b><span style="font-size: large;">These were rationed out to him, as he would have eaten them all in one go, and made himself feel very sick.</span></b><br />
<b><span style="font-size: large;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGgTmNveCHVR8yOE7XEoq25Zy41hh8gY-xJQZZHikmUehwz1Zl_nqgvLFFZUKcnvK8B5_wFNDKkiu8V_OOgiXOOowd7PExcs4f8TnVKinvW3wGe94inGT46ftfIQE9avE3O-nrnnZBsi8D/s1600/0475254-1+-+Edited.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="356" data-original-width="995" height="142" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGgTmNveCHVR8yOE7XEoq25Zy41hh8gY-xJQZZHikmUehwz1Zl_nqgvLFFZUKcnvK8B5_wFNDKkiu8V_OOgiXOOowd7PExcs4f8TnVKinvW3wGe94inGT46ftfIQE9avE3O-nrnnZBsi8D/s400/0475254-1+-+Edited.png" width="400" /></a></span></b><br />
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<b><span style="font-size: large;">I have written about his love of Jaffa Cakes a few times over the years. </span></b><br />
<b><span style="font-size: large;">I still reference 'Jaffa Cake Mountain' to people, as it's still a funny story to me.</span></b><br />
<b><span style="font-size: large;">You can find two posts I wrote here <span style="color: red;">>> </span><a href="https://myboywithautism.blogspot.com/2010/05/learning-difficulites.html" target="_blank">Jaffa Cake Mountain</a></span></b><br />
<b><span style="font-size: large;"> and here <span style="color: red;">>></span> <a href="https://myboywithautism.blogspot.com/2017/01/christmas-2016-and-jaffa-cake.html" target="_blank">The Jaffa Cake Disappointment</a></span></b><br />
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<b><span style="font-size: large;">Happy reading!</span></b><br />
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<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-26981674067021766612019-01-07T14:33:00.001+00:002019-07-31T18:27:19.917+01:00Auticon - All Employees Are On The Spectrum<span style="font-size: large;"><b>Last week I read about a company in America that only employs people who are on the spectrum.</b></span><br />
<span style="font-size: large;"><b>Auticon (formerly Mindspark), is the idea of Gray Benoist, and is only one of a handful of companies that does this.</b></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVxcLTCPKzSfWralOQT8xJWMpWcxwlWDdn2WWW4WQEujMuMxbn1zo0PmiZm0vXVbr7jaQf-ycoT0_YnZNWeVM2Pws2WrPHXIjO9jXDqqTveeOdK14_mjBjF8W1IiFP83I8llIPc7QdTLFb/s1600/_104908135_66e682e5-75dc-42dd-8878-a7fd4bacc012.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-size: large;"><img border="0" data-original-height="351" data-original-width="624" height="223" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVxcLTCPKzSfWralOQT8xJWMpWcxwlWDdn2WWW4WQEujMuMxbn1zo0PmiZm0vXVbr7jaQf-ycoT0_YnZNWeVM2Pws2WrPHXIjO9jXDqqTveeOdK14_mjBjF8W1IiFP83I8llIPc7QdTLFb/s400/_104908135_66e682e5-75dc-42dd-8878-a7fd4bacc012.jpg" width="400" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Gray Benoist from Auticon</span></td></tr>
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<span style="font-size: large;"><b><br /></b><b>From the get go the Auticon interview process takes into consideration the difficulty around eye contact, and the need to look away a lot. There is also the pressure and stress to talk about yourself and 'sell' yourself, which can be very overwhelming for even the most experienced interviewee, and this again is understood and accepted. </b></span><br />
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<b><span style="font-size: large;">Another action Auticon implements is that its employees can wear headsets to minimise the noise in the office, and they even have chance to take time off if they become overloaded - called 'anxiety days off'. </span></b><br />
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<span style="font-size: large;"><b>A German company - SAP - employs a mixture of people, some of who are on the spectrum, and they offer ASD interviewees the choice to build Lego robots, instead of a traditional interview. </b></span><br />
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<span style="font-size: large;"><b>Steve Silberman wrote a piece about this, called 'The Geek Syndrome', and said that this Lego building showed <i>"problem solving skills and commitment to a task". </i></b></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaIJpixMq27HsQjPIpuATDFvmhmIFO-jGm6JHfNJNvrRLM5EgGkd0OI5xRvNv1vcAUSngtUCIhDQRUBHDjYedueJEZoK9F6pbJaZgylt7MwQ9_ODnvS9_RQHQgwX-mPmypMocbODUvT-bG/s1600/Steve_Silberman.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-size: large;"><img border="0" data-original-height="365" data-original-width="350" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaIJpixMq27HsQjPIpuATDFvmhmIFO-jGm6JHfNJNvrRLM5EgGkd0OI5xRvNv1vcAUSngtUCIhDQRUBHDjYedueJEZoK9F6pbJaZgylt7MwQ9_ODnvS9_RQHQgwX-mPmypMocbODUvT-bG/s320/Steve_Silberman.jpg" width="306" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Steve Silberman</span></td></tr>
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<span style="font-size: large;"><b><i><br /></i></b></span>
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<span style="font-size: large;"><b>If more companies understood this, and the struggle people with autism can experience, and implement it during interviews, they could become better aware. This would in turn enable people with ASD, who have passion, commitment, skills, and the drive to do the job on offer, a chance to prove their capabilities. </b></span><br />
<span style="font-size: large;"><b><br /></b></span>
<span style="font-size: large;"><b>Another action Auticon implements is that its employees can wear headsets to minimise the noise in the office, and they even have chance to take time off if they become overloaded - called 'anxiety days off'. </b></span><br />
<span style="font-size: large;"><b><br /></b></span>
<span style="font-size: large;"><b>It goes for everyone however, that when you feel comfortable and accepted, you achieve more, and progress further. </b></span><br />
<span style="font-size: large;"><b>I hope more companies follow suit</b>.</span><br />
<span style="font-size: large;"><b><br /></b></span>
<span style="font-size: large;"><b>You can read more about this here<span style="color: red;"> >>></span> <a href="https://www.bbc.co.uk/news/technology-46538125" target="_blank">The Firm Whose Staff Are All Autistic</a></b></span><br />
<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-79830699778031352932019-01-04T16:16:00.001+00:002019-01-04T16:16:58.732+00:00Tired? Try Drained!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDqnmnfgv9001fk5F2eC1q6wgHChb3PL6NQv_8pkP97R4I611eH5ncDotsDyl4GFvEp8IduWBmfO219obAwJC0dDqpeCEODoDedio_RojjRjQTGA-vEEuFC51cDAkWMXOdmPZcu31vL8Oz/s1600/SN.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="739" data-original-width="750" height="393" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDqnmnfgv9001fk5F2eC1q6wgHChb3PL6NQv_8pkP97R4I611eH5ncDotsDyl4GFvEp8IduWBmfO219obAwJC0dDqpeCEODoDedio_RojjRjQTGA-vEEuFC51cDAkWMXOdmPZcu31vL8Oz/s400/SN.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Courtesy of <a href="https://www.facebook.com/groups/aspecialneedsforum/" target="_blank">The Special Needs Forum, Facebook</a></td></tr>
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<b><span style="font-size: large;">Most parents, especially those with babies, know that feeling of incredible tiredness, and the need to have a quick lie down for a few weeks, but for those of us with a child with a special needs, that tiredness never seems to abate. The 'baby' phase continues on, sometimes relentlessly, making days and nights meld into one, long, never ending struggle to stay upright, or at the very least, awake.</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">If you're reading this, and can relate, keep going, keep fighting, and stay strong. Try and remember to give yourself credit for all you do, even if no one else does. </span></b><br />
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<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-62592144944029799292018-12-31T19:21:00.001+00:002018-12-31T19:21:27.192+00:00Happy New Year!<div class="separator" style="clear: both; text-align: center;">
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<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-83310861338096382802018-12-29T16:01:00.000+00:002019-07-31T18:57:10.201+01:00Brand New Group - Why Don't You Join? <b><span style="font-size: large;">Over the past month I have been busy, and have helped co-found and design a new Facebook group for special needs and disabilities. </span></b><br />
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<b><span style="font-size: large;">Within 4 weeks we have built the membership to over 600, and are looking to increase this further, as the feedback has been so positive. <span style="color: blue;">*Update* We are now at 2000 members as of July 2019.</span></span></b><br />
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<b><span style="font-size: large;">We have members from around the World.</span></b><br />
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<b><span style="font-size: large;">It is a private group (so no one outside of the group can see what is posted), and is very highly moderated - zero tolerance of abuse, hate, cattiness etc, and all requests to join are looked at - we are careful about fake accounts and people looking to cause drama or hurt. </span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">There are a lot of Facebook groups for specific disabilities, but this one is breaking the mould and bringing everyone and every disability and special need<i> </i>together, young and old.</span></b><br />
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<b><span style="font-size: large;">Whether you are a parent/carer/guardian/family member of a child <u>and/or</u> adult with any disability or special need, you are welcome!</span></b><br />
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<b><span style="font-size: large;">Come and join the incredibly friendly, helpful, non judgemental, and inspiring people, and share your story with us. </span></b><br />
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<b><span style="font-size: large;">Clicking this link will open a new window and take you straight to the Facebook page. If you don't have a Facebook account, setting one up is quick and easy.</span></b><br />
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<span style="color: red; font-size: large;">Click >> </span><a href="https://www.facebook.com/groups/aspecialneedsforum/" target="_blank">The Special Needs Forum Facebook</a><br />
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<tr><td class="tr-caption" style="text-align: center;">Copyright design TDB</td></tr>
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<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-30563880864773912352018-11-28T17:43:00.000+00:002018-11-28T17:43:00.786+00:00Confirmation of Epilepsy <span style="font-size: large;"><b>J has been officially diagnosed with epilepsy.</b></span><br />
<span style="font-size: large;"><b>It finally came about quite by chance.</b></span><br />
<span style="font-size: large;"><b><br /></b></span>
<span style="font-size: large;"><b>After all the episodes of finding him unconscious, an MRI scan (under a general anaesthetic), visiting a specialist, and recording everything down, I finally caught the very beginning of these episodes, and managed to record it on my phone, which I knew was vital for the specialist to see - as we never saw the beginning of each one, there was a mystery around what was happening.</b></span><br />
<span style="font-size: large;"><b><br /></b></span>
<span style="font-size: large;"><b>I had installed a basic baby monitor in his room, and every night I had the parent unit on the highest volume, in the hope I not only would hear when he goes into the unconscious stage (he makes a gurgling, snorting, snoring noise), but to be on alert for anything else.</b></span><br />
<span style="font-size: large;"><b><br /></b></span>
<span style="font-size: large;"><b>One late night, at around 1am, I woke with a start, as I heard a noise that sounded like a cry out. I sat bolt upright, grabbed my phone, and raced to his room. I just <i>knew</i> it was urgent and not a false alarm.</b></span><br />
<span style="font-size: large;"><b>There I was greeted with the sight and sound of him having a full blown seizure. </b></span><br />
<span style="font-size: large;"><b>I have never seen first hand what a seizure looked like, and to say I was shocked would be an understatement. </b></span><br />
<span style="font-size: large;"><b>I'm very good under pressure however, and my instincts kicked in straight away. </b></span><br />
<span style="font-size: large;"><b>His arms were up in the air, his whole body was jerking uncontrollably, his head was shaking violently, his eyes were open, but had rolled back into his head, and he was making an awful noise.</b></span><br />
<span style="font-size: large;"><b>This lasted around three minutes.</b></span><br />
<span style="font-size: large;"><b><br /></b></span>
<span style="font-size: large;"><b>When he had stopped the fitting, he went into the second phase, the phase I always came upon, and to which had been confusing the specialist and myself as to what was happening. </b></span><br />
<span style="font-size: large;"><b>This phase can last a very long time (in regards to the 'normal' time frames for this kind of thing.</b></span><br />
<span style="font-size: large;"><b>It was interesting and highly informative to see what was happening, and to finally get it recorded as proof. </b></span><br />
<span style="font-size: large;"><b><br /></b></span>
<span style="font-size: large;"><b>I telephoned the specialist's secretary the next morning, and left a detailed message. I was contacted later that day by the epilepsy nurse who works with the specialist, and she asked me to 'Whatsapp' the video to her (there are some benefits to technology!).</b></span><br />
<span style="font-size: large;"><b>The next day she telephoned again, and said herself and the specialist could see from the footage that the fit was classed as a 'tonic clonic' fit.</b></span><br />
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<span style="font-size: large;"><b>An emergency appointment was made to see them, and after going through every episode again (it gets quite easy to reel off each episode I've witnessed, as I've had to repeat it so often), and the confirmation of my latest video, J was given an official diagnosis.</b></span><br />
<span style="font-size: large;"><b><br /></b></span>
<span style="font-size: large;"><b>Another word was mentioned, and I'd never heard of it before.</b></span><br />
<span style="font-size: large;"><b>SUDEP</b></span><br />
<span style="font-size: large;"><b>This stands for <u>S</u>udden <u>U</u>nexplained <u>D</u>eath from <u>Ep</u>ilepsy.</b></span><br />
<span style="font-size: large;"><b><br /></b></span>
<span style="font-size: large;"><b>As J's epilepsy only occurs at night, his type of epilepsy seizures are called 'tonic clonic', he takes a long time to recover, and is unconscious for such a long time after the initial seizure, and he has had over 30 of these during the last 6 months, his risk of SUDEP is very high. </b></span><br />
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<span style="font-size: large;"><b>There is a decision being made on what medication to prescribe him, but the side effects from them are a significant risk too, and the specialist is worried about them. One of the drugs suggested can cause extreme weight gain, and as J is really tall and well built (not obese, but stocky), and another can cause mood swings and violent outbursts, which would not be safe or healthy considering his size, and the risk of his younger siblings, it's a difficult choice, but a choice that has to be made.</b></span><br />
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<span style="font-size: large;"><b>I have included some links below, which will take you to genuine web pages that explain further about 'tonic clonic' epilepsy and SUDEP.</b></span><br />
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<span style="font-size: large;"><b><a href="https://www.epilepsysociety.org.uk/sudep?gclid=EAIaIQobChMIreGexMn33gIVb7vtCh327gdCEAAYASAAEgImQPD_BwE#.W_7Lp4H7TnE" target="_blank">SUDEP Epilepsy Society</a></b></span><br />
<b><span style="font-size: large;"><a href="https://www.epilepsysociety.org.uk/tonic-clonic-seizures?gclid=EAIaIQobChMI9Jvyxcz33gIVzbDtCh2hhwlpEAAYASAAEgJaPvD_BwE#.W_7Oa4H7TnE" target="_blank">Tonic Clonic Seizures</a></span></b><br />
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<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-25196091525979605132018-08-25T17:40:00.000+01:002019-08-01T13:13:18.219+01:00Epilepsy And Autism? <b><span style="font-size: large;">I said I would write about the 'episodes' that J has been experiencing, so here goes....</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">On a Sunday evening, back in July 2017, I was sat in the lounge, watching TV. Two of the boys were in bed, and J was wandering around upstairs (it was 9pm, so it wasn't his bedtime).</span></b><br />
<b><span style="font-size: large;">I heard a *bang* from upstairs, and as J is a fairly loud boy, with big feet, I presumed he had stamped his foot on the floor. I called up "<i>stop banging</i>", and went back to watching the TV. </span></b><br />
<b><span style="font-size: large;">Within a minute or two, my ears tuned into a noise that did not 'fit' into the house. Gut instinct? Mother's instinct? It just didn't feel right.</span></b><br />
<b><span style="font-size: large;">I paused the TV, and listened intently. </span></b><br />
<b><span style="font-size: large;">I jumped up after a few seconds, and announced with a panicked voice, "<i>something isn't right</i>!" and made my way to the staircase. I got half way up the stairs, and when I turned my head to the left, which meant I could see straight into the family bathroom, there on the floor was J, making these horrendous noises (I still feel sick every time I think about those noises).</span></b><br />
<b><span style="font-size: large;">His head was wedged under the bottom of the radiator, with it digging into his brow. </span></b><br />
<b><span style="font-size: large;">He was unconscious and he was making a gravelly, snorting, choking for breath noise. </span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">999 was called, and the operator could hear the noises J was making, and was asking all the questions about his heartbeat, breathing, any obstructions in his throat, any wounds etc.</span></b><br />
<b><span style="font-size: large;">A 'Rapid Response' man arrived within minutes, closely followed by a twin ambulance crew, and J was finally 'coming to'. </span></b><br />
<b><span style="font-size: large;">We got him onto his bed, and he wanted to sit up. He allowed them to put a monitor on his finger, a blood pressure cuff on his arm, and use a stethoscope on his chest. </span></b><br />
<b><span style="font-size: large;">He seemed fine, if not a little dazed. </span></b><br />
<b><span style="font-size: large;">The decision was made, after around thirty minutes of them observing him, that it would be better for him to stay at home, as it would be too stressful for him to be in a bright and noisy A&E department for hours and hours. </span></b><br />
<b><span style="font-size: large;">I was told to call 999 again if he went downhill or it happened again that night.</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">I checked on him every hour through the night, but somehow he managed to have another episode between these checks. </span></b><br />
<b><span style="font-size: large;">I discovered him with blood caked over his face, and dazed. I had missed the actual episode, and had discovered him after it. He had a nasty wound to the side of his tongue, where he had chewed away at it (he still has dents in that side to this day, as it healed, but not entirely).</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">I chose to call the NHS helpline number, and ask for their advice as to whether I should take him to hospital, a GP, or call for an ambulance - I didn't want to waste a call to 999, and an ambulance, as I wasn't sure if he fitted the criteria. </span></b><br />
<b><span style="font-size: large;">After going through some basic questions with me, the call handler said a doctor or nurse would call me back within an hour. The call back came within five minutes. </span></b><br />
<b><span style="font-size: large;">After retelling what had happened the night before, and what I had just discovered, they sent an ambulance out for him, and I was told he would need to go straight to hospital.</span></b><br />
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<b><span style="font-size: large;">As J was still very dazed and lethargic, the actual wait in the A&E department wasn't too stressful for him. He slept on and off, and didn't try to escape, or make any vocal distress noises. </span></b><br />
<b><span style="font-size: large;">We were transferred to the children's wing of the hospital, and were lucky enough to see a specialist epilepsy doctor, who worked with children and adults who also have a learning disability. </span></b><br />
<b><span style="font-size: large;">As J is so tall, the beds in the children's department were too short for him, and he had to lie curled up in the fetal position, or else have his lower legs dangle off the end!</span></b><br />
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<b><span style="font-size: large;">I retold the story again, about each incident, and described in detail what happened. At no point did J 'jerk' or physically move his body. He was completely unconscious, and struggled to breath. </span></b><br />
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<b><span style="font-size: large;">When he was in the children's ward, they did an ECG on his heart, and he spent his time taking the probes stuck on to his chest and legs, off. It didn't help that they didn't know how to get the ECG machine to work, so he was getting bored with little square sticky pads peeling up at the sides, and decided to help them fall off completely. With my help, they finally got the machine to work ( amazing what switching it off and on can do!), and I tried to keep Joseph engaged with songs and away from the sticky squares. The ECG was fine.</span></b><br />
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<b><span style="font-size: large;">An appointment was made to see the specialist in his clinic, and we were sent home.</span></b><br />
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<b><span style="font-size: large;">During the next week he had another episode, and I filmed it. </span></b><br />
<b><span style="font-size: large;">He was in his bed, it was around 1am, and I filmed what was happening. I did this to prove there was no physical movements and to show the way he was breathing and choking. I wanted to back up my claim that he was not just in a 'deep sleep' and snoring. </span></b><br />
<b><span style="font-size: large;">I tickled his feet. I patted his back. I lay right next to him, and held him in the recovery position, and kept his jaw from grinding onto his tongue. If I were to even walk into his room when he's asleep, he stirs. If I managed to make it in there at all, and dared to touch his hair or his feet, he'd rapidly pull the covers over his head, or turn onto his other side. He was not just having a heavy sleep. He was experiencing something that made him lose consciousness, and become dangerously at risk of choking on his own blood or tongue.</span></b><br />
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<b><span style="font-size: large;">The appointment with the specialist went okay. As okay as could be, as there was nothing he could say to reassure me, or confirm any diagnosis. It was a mystery what was happening.</span></b><br />
<b><span style="font-size: large;">He wanted J to have an EEG to monitor the electrical waves in his brain. </span></b><br />
<b><span style="font-size: large;">The problem with an EEG is that the patient must lie very still for up to an hour, with probes stuck to their head. This would not work for J. Also, as the patient must be awake during this time, they cannot use any form of sedative or sleep inducer to keep the patient still. </span></b><br />
<b><span style="font-size: large;">This meant that the EEG idea was abandoned.</span></b><br />
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<b><span style="font-size: large;">An MRI scan was suggested, as this could be performed under a general anaesthetic. </span></b><br />
<b><span style="font-size: large;">It took 11 months for this to happen. I had to chase it with my GP, as well as the specialist, as I kept on drawing a blank with my enquiries.</span></b><br />
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<b><span style="font-size: large;">During those 11 months, he had many more of these episodes. I would wake to hear that familiar, and scary noise, and grab my phone (to A) time the episode and record it, and B) to be able to call 999 if needed).</span></b><br />
<b><span style="font-size: large;">I had to lay with him each time, keeping him in the recovery position, and continually checking his mouth for choking or biting his tongue. I would talk to him, and stroke his hair. I don't know if he's aware or can hear me, and it is frustrating enough for him that he is unable to communicate verbally in his everyday life, so to be in this state, and potentially scared witless by his body behaving this way, I want to make sure he can hear my voice and my reassurances that I am there and he is safe. </span></b><br />
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<b><span style="font-size: large;">He finally had his MRI, and it was quite a stressful wait for him on the ward prior to the scan. </span></b><br />
<b><span style="font-size: large;">We had to wait five hours in a hot and stuffy ward, before he could go down to the scanning room. </span></b><br />
<b><span style="font-size: large;">I insisted he have a pre-med which would help him doze more, and the second dose worked within twenty minutes or so. It worked so well that he fell asleep on the ward, and wasn't awake for the actual administration of the general anaesthetic, or the long walk down the corridors to the MRI unit. </span></b><br />
<b><span style="font-size: large;">He was wheeled down to the side room next to the scanner, where the anaesthetist began holding the mask over J's face. When he told me he was 'under', he said to give J a kiss goodbye, and it took all my strength not to break down there and then. I managed an arm rub and blew him a kiss, as if I had have reached down to kiss him, I think I would have dissolved. </span></b><br />
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<b><span style="font-size: large;">I have experienced a child having a G/A before, as W needed an MRI as well, when he was only a few months old, to rule out a brain tumour being the cause of his nystagmus. </span></b><br />
<b><span style="font-size: large;">It doesn't get easier the second time. You have this feeling of losing control of being the carer and protector of your child, and couple that with the worry about the small risks of having a G/A and what they will find, you have to try and remain calm within yourself, and occupy your mind with a book or a walk. </span></b><br />
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<b><span style="font-size: large;">We are awaiting the full results of the MRI. Initial looks by the specialist, at a scheduled appointment recently, didn't show any obvious tumour, however the 126 images need to be looked at in depth by specialists. Our consultant has also referred us to another specialist in another hospital, as he wants a second opinion, and potentially this other specialist may have come across a case just like J's. </span></b><br />
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<b><span style="font-size: large;">For now, our specialist has said he doesn't believe it to be epilepsy. Despite this, he talked about the drug options available, but each one comes with some quite severe side effects. </span></b><br />
<b><span style="font-size: large;">One drug has the high risk potential of making J angry and aggressive. </span></b><br />
<b><span style="font-size: large;">Another drug causes insatiable feelings of hunger and wanting to eat non-stop. </span></b><br />
<b><span style="font-size: large;">Both of these side effects would be detrimental to the measures I have in place at home. </span></b><br />
<b><span style="font-size: large;">I have locks on the 'goodies' draws, and also have a separate fridge and freezer in the garage, which contain the foods J would eat raw. The kitchen fridge-freezer only holds foods which J won't touch.</span></b><br />
<b><span style="font-size: large;">I also cannot have J becoming violent or aggressive. He is so tall and well built, he would be a danger to myself and to his younger brothers, and it would make excursions out of the house a high risk.</span></b><br />
<b><span style="font-size: large;">Add to this, the specialist said that these drugs are not 100% in helping, and can take up to two years to start showing their positive effect. </span></b><br />
<b><span style="font-size: large;">I cannot do that to J. I cannot medicate him with such high risks and low rewards. </span></b><br />
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<b><span style="font-size: large;">For now all I can do is monitor J every night. My ears feel like they have a radar in them now. They twitch at the slightest 'odd' sound in the house, and they get confused when one of the dogs snores (this dog has always been a loud snorer, but in his old age it has gotten worse), and I go into a mild, split second panic that it's J. </span></b><br />
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<b><span style="font-size: large;">I'm hoping that whatever it is, he grows out of it quickly. We've been lucky so far that they only happen when he's at home, but his school (and from September, his College ) is aware of the situation, just in case. </span></b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU9Rg8QqNrcPskR8g0pyR2LaVPxWbPRkGcp3-QOhGxk3-vkM5jRuq6OYuhQiE8jmU4p__f4uAxR84u3EmfEJX4rNMLQ3TPZtJumBAQKDvdO9Aw-Wo94DuI50ozkbtLOPIYuhyphenhyphenswFcAOhFF/s1600/epilepsy+autism+my+boy+with+autism.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="225" data-original-width="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU9Rg8QqNrcPskR8g0pyR2LaVPxWbPRkGcp3-QOhGxk3-vkM5jRuq6OYuhQiE8jmU4p__f4uAxR84u3EmfEJX4rNMLQ3TPZtJumBAQKDvdO9Aw-Wo94DuI50ozkbtLOPIYuhyphenhyphenswFcAOhFF/s1600/epilepsy+autism+my+boy+with+autism.png" /></a></div>
<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-88044692785042579692018-08-11T19:29:00.001+01:002018-08-11T19:54:20.402+01:00The Full Moon Effect<b><span style="font-size: large;">I've written before about the full moon, and it's effects it has on J, and I feel it's time to write further about this, as it hasn't abated over the years, and it also affects my other two children as well.</span></b><br />
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<b><span style="font-size: large;">I use a moon phase tracker on my phone app, and it's been really useful in solving the riddle of why my boys are acting up even more than usual. </span></b><br />
<b><span style="font-size: large;">Let's be honest, children, no matter what age, are challenging. The challenges change through their childhood, but the full moon exacerbates these, and it can be stressful, noisy, and incredibly hard work.</span></b><br />
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<b><span style="font-size: large;">Arguments, shouting, short tempers, door slamming, stomping up the stairs, selective hearing, demands, winding each other up, even just breathing in the vicinity of one another, are all the joys of raising siblings, and these go into full throttle when the moon is shining her glorious full sphere down on us. </span></b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimt6oMHpQIwSqNFAsjqwTQ5SIrfKBIiHKX8cXYTLO84SFS574kOlXvt-oJd8R5sksWv7gg8pxgp5eEjJy5II4mjGfJEIVEPcVJMDel3Q2bsfuSPtiGnv58XalVHkivqff6ceMeXCW9cgSG/s1600/luna.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><b><span style="font-size: large;"><img border="0" data-original-height="304" data-original-width="405" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimt6oMHpQIwSqNFAsjqwTQ5SIrfKBIiHKX8cXYTLO84SFS574kOlXvt-oJd8R5sksWv7gg8pxgp5eEjJy5II4mjGfJEIVEPcVJMDel3Q2bsfuSPtiGnv58XalVHkivqff6ceMeXCW9cgSG/s320/luna.jpg" width="320" /></span></b></a></div>
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<b><span style="font-size: large;">Something I'm keeping a track of is the full moon and J's 'episodes' of total unconsciousness, which last for up to 45 minutes at a time (they have increased in their duration the last couple of times). I'm interested to see if there is any link between the two. I've read that some people find their epileptic seizures increase at this time, so it's something to keep in mind, and hopefully I may see a clearer reason or pattern to what is happening to him. If you want to know more about these 'episodes', I've written about them here - <a href="https://myboywithautism.blogspot.com/2018/05/a-scary-night-for-me-and-my-boy.html" target="_blank">A Scary Night</a> - and will endeavour to write a full post over the next few weeks, to explain in depth what has been happening to my Boy for the last year. At the moment they are not being classed as epilepsy, as he doesn't 'fit', but they are affecting him quite badly, and he is under the care of a specialist (the person who has said he doesn't feel these 'episodes' are true epilepsy).</span></b><br />
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<b><span style="font-size: large;">As the words 'lunacy' and 'lunatic' are derived from Luna, the ancient Roman Goddess of the Moon, it seems the full moon and her effects have been noted for a very, very long time. Perhaps ancient Roman parents also had to endure little Maximus and Octavius</span></b><b><span style="font-size: large;"> stamping their feet, arguing over who gets to hold the broken stick, moaning about their supper, and complaining that Argentia has more chicken on her plate than they do. </span></b><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYm4Tt8xEtlDAQY1yT6hKWnY31aWRqcm42W5rXJKmYdbqGp8aAYJW85UehLE8q_vLFsHcUSNWHx2noQyROGlVDz3EjXlaZmLsY6CGRGmZSG9bPAN8z_5cNvYHDotdZmrkzBIJ9RMfh2rto/s1600/lunagodess.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><b><span style="font-size: large;"><img border="0" data-original-height="315" data-original-width="244" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYm4Tt8xEtlDAQY1yT6hKWnY31aWRqcm42W5rXJKmYdbqGp8aAYJW85UehLE8q_vLFsHcUSNWHx2noQyROGlVDz3EjXlaZmLsY6CGRGmZSG9bPAN8z_5cNvYHDotdZmrkzBIJ9RMfh2rto/s1600/lunagodess.jpg" /></span></b></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: large;">Luna, Roman Goddess of the Moon</span></b></td></tr>
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<b><span style="font-size: large;">Whilst the scientific jury disagrees with a lot of the beliefs surrounding the moon and her effects on humans and animals, there are a lot of people who disagree. There have been many studies carried out, and some conclude there are no significantly higher accident rates during this time ( emergency room intake statistics ), whereas other Doctors who work in psychiatric units have noted an increase in erratic behaviours amongst their in-patients at this time.</span></b><br />
<b><span style="font-size: large;">There have been sleep studies, where volunteers were not told the reason for their participation, and could not see, nor where made aware of a full moon, and their sleep pattern and sleep cycles were assessed before, during and after. One study (<a href="https://www.cell.com/current-biology/fulltext/S0960-9822(13)00754-9" target="_blank">Current Biology</a>) noted the participants (during the full moon) took longer to fall asleep, had 30% less NREM (non rapid eye movement - deep sleep), and overall had 20 minutes less sleep.</span></b><br />
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<span style="font-size: large;"><b>It is an interesting topic of discussion, and one that will not be conclusively decided for a long time. I am in the 'believers' camp, as I see what it does to my children, and other people around me - even my mood is altered, but that could be put down to having to play referee to warring children, and ensuring that each one has a turn holding the broken metal handle from the garden broom ( yes they really can argue about such absurd things!) </b></span><br />
<span style="font-size: large;"><b><br /></b></span><span style="font-size: large;"><b>It is interesting talking to other parents about this, as some see a pattern, and some don't. </b></span><br />
<span style="font-size: large;"><b>Whatever the truth is, the moon is a fascinating natural satellite for Earth, and humans have been intrigued by her beauty and mystique ever since we first looked up to the night sky. </b></span>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-57465003639012767202018-08-09T22:43:00.000+01:002018-08-11T19:42:19.681+01:00The Dentist Visit <b><span style="font-size: large;">The dentist has been something of an anomaly for J. </span></b><br />
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<b><span style="font-size: large;">During his primary school years, he regularly saw a dentist who specialised in treating patients who had learning difficulties, autism, ADD etcetera. </span></b></div>
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<b><span style="font-size: large;">Appointments were a stressful time for J, but she persevered, and was happy to attempt to look at his teeth whilst he stood up. She had some very clever tricks to persuade J to open his mouth, and with split second timing, she was able to view into his mouth every few seconds, and check his teeth. </span></b></div>
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<b><span style="font-size: large;">J has been very lucky with the strength and health of his teeth, despite the struggle to get him to brush them, or have them brushed by myself. </span></b></div>
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<b><span style="font-size: large;">He doesn't drink juice or cordials, sugary fizzy drinks, or milk. He doesn't eat any kind of sugary sweets, or even fruit (which can have a high natural sugar content) but he happily consumes pints of water a day, and eats a lot of vegetables, so this must have a positive effect on his oral health. </span></b></div>
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<b><span style="font-size: large;">When J began secondary school, the dentist appointments began to tail off, and were sporadic. There was never a real reason given as to why, but the likelihood was financial - the constant cuts to services for the special needs sector, for both children and adults, has been detrimental to so many. </span></b></div>
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<b><span style="font-size: large;">There was a gap of around 18 months with J not seeing a dentist (bad I know), but I then decided to take matters into my own hands and that he would be seen by my own dentist. This also meant that if J ever needed to have treatment, my dentist would be in the position to refer J to a specialist who would use a sedating gas to perform any procedures, and it would mean J would be still and calm, and the specialist dentist team would be able to get on and complete the necessary treatment with ease. </span></b></div>
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<b><span style="font-size: large;">I briefed my dentist about J ; warning him and the dental nurse that J is very tall (his height can intimidate some people, and coupled with his non verbal babbling, can be a shock for them), and would be scared, possibly noisy, and at worst, refuse to even open his mouth. </span></b></div>
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<b><span style="font-size: large;">J was seen straight away, with no waiting around (as I use a private dentist and not an NHS one - due to having no available NHS ones in my area -waiting times are not as long I have found), and he willingly sat back in the dentist's chair. </span></b></div>
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<b><span style="font-size: large;">He jolted a little as the chair lowered backwards, but still remained seated. </span></b></div>
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<b><span style="font-size: large;">The dentist showed him the little mirror tool, and allowed J to hold it and look at his face close up.</span></b></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT2knO-nfkZav_bUiCcQN_SwfKtmUdparQuL1j7szkFOF4-fdiVC_ULpqzycF8c1w2jgaNtYGNSTRM6zrzFOwt7dEY2dTdc9cZ6fEMT9100M-g-IaaFkeSK9DaDQLlcJuZ3JRWcKY8ZRZi/s1600/3Pcs-Stainless-Dental-Tool-Set-Kit-Dentist-Teeth-Clean-Hygiene-Picks-Mirror.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="800" data-original-width="800" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT2knO-nfkZav_bUiCcQN_SwfKtmUdparQuL1j7szkFOF4-fdiVC_ULpqzycF8c1w2jgaNtYGNSTRM6zrzFOwt7dEY2dTdc9cZ6fEMT9100M-g-IaaFkeSK9DaDQLlcJuZ3JRWcKY8ZRZi/s200/3Pcs-Stainless-Dental-Tool-Set-Kit-Dentist-Teeth-Clean-Hygiene-Picks-Mirror.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dental Mirror</td></tr>
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<b><span style="font-size: large;">J followed his request to open his mouth, and even though he did close it and re-open a few times, he kept it open for a good amount of the time, and even allowed the dentist to use the dental explorer (otherwise known as a sickle probe), and feel over his teeth.</span></b></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjknryniEp5Dh12nn7RXyBk1PKB13gn9C4NVumIXm_db2xfYl1fXndeeg_NawTMY_XAbEKAHYXLTwJd03JLtU4nObVK1i-JqFTRWaTTf67CeSyNPl3Lg5TZH9uV1l6nuIo7sVGWx47_YND/s1600/am-dental-sickle-probe-no-54-each-p666-429_medium.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="350" data-original-width="350" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjknryniEp5Dh12nn7RXyBk1PKB13gn9C4NVumIXm_db2xfYl1fXndeeg_NawTMY_XAbEKAHYXLTwJd03JLtU4nObVK1i-JqFTRWaTTf67CeSyNPl3Lg5TZH9uV1l6nuIo7sVGWx47_YND/s200/am-dental-sickle-probe-no-54-each-p666-429_medium.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sickle Probe / Dental Explorer</td></tr>
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<b><span style="font-size: large;">I was amazed at how well J coped with the new environment, new faces, a potentially stressful situation (not many people enjoy a visit to the dentist), and having to do something he doesn't like ( laying back and not being in control, having people touch him on his face, and the frightening feeling of not understanding what may happen). </span></b></div>
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<b><span style="font-size: large;">The relief of not having him freak out, and have to deal with the fall out, and the feeling of achieving another goal with relative ease, is quite an accomplishment for myself too. </span></b></div>
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<b><span style="font-size: large;">As this went so well, it bodes well for further dental check ups, that J will be compliant having his teeth checked over, and he'll build up a trust. I'm further relieved about the agreement that he will be referred for any treatment, no matter how minor, and that he'll be sedated, meaning there will be no stress for him or me. </span></b></div>
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Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-1014101294397123912018-08-01T21:27:00.001+01:002019-07-31T18:24:40.157+01:00Pupil Of The Year!<b><span style="font-size: large;">On J's last day of school, I found a certificate and gift voucher nestled amongst various wads of school work, accumulated over the last school year, which had been sent home for me to keep. </span></b><br />
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<b><span style="font-size: large;">His certificate was an award for <i>'Pupil of the Year'</i>! </span></b></div>
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<b><span style="font-size: large;">As I congratulated him, with high praise, he looked at his photo on the certificate, and walked off, nonplussed. Whilst he may not be bothered by this accolade, or perhaps he doesn't understand what it means, I was over the moon. </span></b></div>
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<b><span style="font-size: large;">I am an advocate of boosting people's confidence, skills and values, and want my children to do their best, be their best, and believe in themselves and their abilities. </span></b></div>
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<b><span style="font-size: large;">If J didn't have his difficulties, and attended a mainstream school, I would hope he would be just as motivated and keen to try his hardest, and work with dedication towards gaining good grades and exam results.</span></b></div>
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<b><span style="font-size: large;">The gift voucher he also received can be spent in a vast range of shops, and I'm certain his choice will be a food shop, where he can browse the chocolate and biscuit aisles, and joyfully fill a basket with his selection of goodies. As he isn't able to convey to me what shop he'd choose, as his cognitive impairment limits this, I am confident in making this choice for him, due to knowing him so well, and being able to judge his likes and dislikes. He is very food motivated, and he will be in glorious confectionery heaven. </span></b></div>
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<b><span style="font-size: large;">It was a wonderful end to his five years at that school, and I'm so proud that he worked hard, tried his best, and gained this acknowledgement from his teacher, support staff, and the Head Teacher, who chose him from all the other pupils. </span></b></div>
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Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-29705346529621877522018-07-29T16:20:00.004+01:002018-08-11T19:43:08.069+01:00Amazing Things Happen - Alexander Amelines<b><span style="font-size: large;">I've come across a fabulous short animated video, which was created by Alexander Amelines.</span></b><br />
<b><span style="font-size: large;">It is titled 'Amazing Things Happen', and is very descriptive and informative about what autism is, and how a person with autism thinks and feels.</span></b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFTOhcXqOWOErqNAGv5_fS6ySkm0s_CsKv3AQqBx0KKv5l44oK-UfUbgMFoxWUH4y_6FHlsCj6RieLGfyvtE-pMwIvdwCqtEo_p1gnQUurZVMZOBnN075rjI_aI0UGk3xfTbGfMmBBnTIS/s1600/maxresdefault+%25281%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFTOhcXqOWOErqNAGv5_fS6ySkm0s_CsKv3AQqBx0KKv5l44oK-UfUbgMFoxWUH4y_6FHlsCj6RieLGfyvtE-pMwIvdwCqtEo_p1gnQUurZVMZOBnN075rjI_aI0UGk3xfTbGfMmBBnTIS/s320/maxresdefault+%25281%2529.jpg" width="320" /></a></div>
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<b><span style="font-size: large;">I highly recommend you watch it, and it may be useful in educating school children, as well as adults who may want to learn more about it. Just being able to empathise with how someone with autism sees the world will be a positive step.</span></b><br />
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<b><span style="font-size: large;">This is the link, which will open a new window, and take you to YouTube - <a href="https://www.youtube.com/watch?v=RbwRrVw-CRo" target="_blank">Amazing Things Happen</a></span></b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcV9bJhps8QTYBRV0BB-pZkbNf9iR3ROjIgbK4UpKtolh3MtcwwDs2aZqARydbcEq0n0oDjtyH8UEnm4_vR8F0LU_Axj8L1xXtBGbzWOYwikFsj9EckdUZY_nQivTaUZTh9sYNsljP4FJD/s1600/maxresdefault.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="1280" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcV9bJhps8QTYBRV0BB-pZkbNf9iR3ROjIgbK4UpKtolh3MtcwwDs2aZqARydbcEq0n0oDjtyH8UEnm4_vR8F0LU_Axj8L1xXtBGbzWOYwikFsj9EckdUZY_nQivTaUZTh9sYNsljP4FJD/s320/maxresdefault.jpg" width="320" /></a></div>
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<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-52550881655896648522018-07-29T13:39:00.001+01:002019-08-01T20:12:37.888+01:00The Worry Of Them Growing Up<b><span style="font-size: large;">When J was first diagnosed with autism, and I was at the very beginning of this journey, there was very little 'real life' information about. There was the odd leaflet and paragraph in a medical journal, but it was hard to find first hand information from people, as there was no Google, no online forums, no online groups, and as he was so young, he only attended a mainstream nursery, so I didn't get to meet other parents who were in the same boat as myself.</span></b><br />
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<b><span style="font-size: large;">There were no groups to attend for his age, as the only specialist horse riding group was for ages 8 and up, and as he was 3, five years seemed a long wait for any social input. </span></b><br />
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<b><span style="font-size: large;">The very sparse information I gathered from various sources was always quite daunting and even scaremongering at times. </span></b><br />
<b><span style="font-size: large;">I've mentioned before that the first professional we saw, for a very brief meeting, diagnosed autism within 15 minutes, and handed me a leaflet about it. This leaflet was doom and gloom. The author had nothing positive to say. The basis of it centred around what your child with autism <i>won't </i>be able to do or achieve :- </span></b><br />
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<li><i><b><span style="font-size: large;">No marriage.</span></b></i></li>
<li><i><b><span style="font-size: large;">No children. </span></b></i></li>
<li><i><b><span style="font-size: large;">No career. </span></b></i></li>
<li><i><b><span style="font-size: large;">No friends. </span></b></i></li>
<li><i><b><span style="font-size: large;">No social life. </span></b></i></li>
<li><i><b><span style="font-size: large;">No real life.</span></b></i></li>
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<i><b><span style="font-size: large;"><br /></span></b></i>
<b><span style="font-size: large;">It was tough reading, and for such a small leaflet, it crammed in as much negativity as it could.</span></b><br />
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<b><span style="font-size: large;">As we moved soon after, our new GP disagreed with the diagnosis, and said 15 minutes was not sufficient time to make such a sweeping statement. </span></b><br />
<b><span style="font-size: large;">We ended up attending a weekly session at a centre that had trained staff who interacted and observed J and the other children at this gathering, and over the course of a year, a firm diagnosis was made. </span></b><br />
<b><span style="font-size: large;">Yes, it was autism, but this time it was based on extensive observations, and not a rushed, brief chit chat.</span></b><br />
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<b><span style="font-size: large;">During this year, I got to meet other parents, with children who had similar difficulties as J. </span></b><br />
<b><span style="font-size: large;">I was new to this, but it was good to share fears and worries with others who were in the same boat. </span></b><br />
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<b><span style="font-size: large;">One conversation we had was around the worry of when they turn into teenagers and beyond. </span></b><br />
<b><span style="font-size: large;">The strength, inappropriate behaviours,and violence they could have. </span></b><br />
<b><span style="font-size: large;">It was discussed about teenage boys masturbating in front of family or in social settings, and how to encourage them to keep it to their bedroom. I dreaded the day this happened. </span></b><br />
<b><span style="font-size: large;">I shall keep it brief and without too much graphic description, but it is safe to say I have not had anything like this happen. Yes, J does 'pleasure' himself, but it is always in his bed, under his cover, and never in front of his brothers, or myself. He has learnt a natural human act that brings pleasure, and has the understanding (from his own thought, not having been told) that it is a private matter, kept away from others. It may be hard for some to understand what I've written here, and why I am so blase about it, but J has no interest in finding a partner, and will more than likely remain a virgin, so for him to find a normal, human response for physical pleasure is a good thing in my eyes.</span></b><br />
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<b><span style="font-size: large;">I mentioned the conversation above, about violence too, and had prepared myself for his behaviours to escalate into dreadful incidents of me having to try and restrain him, and being too weak against his strength to do so. </span></b><br />
<b><span style="font-size: large;">This too has <i>not</i> materialised. Yes he is a tall (he can touch the ceiling without going onto tiptoes), broad shouldered young man, and yes he has strength (he opens bottle lids that I can't, and carries heavy boxes for me), but he doesn't hit out, doesn't hit me or his brothers, doesn't deliberately break things, or smash up the house. </span></b><br />
<b><span style="font-size: large;">He isn't anything like the scenarios I had been filled with fear about. </span></b><br />
<b><span style="font-size: large;">He<i> is</i> noisy, and as he has such large feet, you can tell what room he is in, just by the thumping of his feet on the floor or staircase, and the echos of Barney the purple dinosaur's "I love you" tune on constant loop, emanating from his iPad. These are easy to live with, and I am thankful he is such a laid back young man (yes he does get stressed from certain things, but I do my best to either eliminate certain triggers in the first place, or anticipate and intercept them, and use diversion tactics to minimise the impact). Every day is a learning curve, and I have to keep my eyes and ears alert for any trigger, but it's worth it to keep him calm and happy (which directly impacts on his brothers too, so keeping a harmonious house keeps everyone happy). </span></b><br />
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<b><span style="font-size: large;">Going back to the doom and gloom leaflet, I <i>can</i> see that J isn't going to have most of the things they said he wouldn't, <u>but</u> on the flip side, and keeping with my positive attitude around autism and learning difficulties, he is :-</span></b><br />
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<li><i><b><span style="font-size: large;">Happy</span></b></i></li>
<li><i><b><span style="font-size: large;">Contented</span></b></i></li>
<li><i><b><span style="font-size: large;">Safe</span></b></i></li>
<li><i><b><span style="font-size: large;">Stress free</span></b></i></li>
<li><i><b><span style="font-size: large;">Loved</span></b></i></li>
<li><i><b><span style="font-size: large;">Respected</span></b></i></li>
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<b><span style="font-size: large;">These are important, and should be celebrated, rather than looking for all the negatives. It can be hard to accept the things your child may not achieve, or to live the life you wanted, but look to what they can do, look to what they enjoy, and keep positive that their path may not travel along everyone else's path, but this is their journey, and their life, and we have to do our best to enrich it, and support them, and most importantly to love and respect them for who they are. </span></b><br />
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<b><span style="font-size: large;"><br /></span></b>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-29210662464100740302018-07-22T20:36:00.000+01:002018-07-22T20:45:17.239+01:00Special Needs Schools - A Big Thank You<b><span style="font-size: large;">Here in the UK the school summer holidays have begun. Six weeks of trying to find activities to keep your special needs child/ren, (and your other children) occupied, and yourself sane.</span></b><br />
<b><span style="font-size: large;">There appears to be a lot of play schemes for 'neuro-typical' children, which come at a price, but a scarce amount of schemes for children with additional needs. These play schemes are very sought after, and are over subscribed, meaning that your child may only get a few days awarded. This isn't enough sadly, and is something I may explore further in a future post.</span></b><br />
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<b><span style="font-size: large;">J, over the years has begun to learn about the times he doesn't go to school - he understands when I say it's the weekend (although his concept of time is something I'm not sure has developed). The school holidays are a long, drawn out, unwanted time for J. He would be happy attending school every day. The routine, and the stimulation from lessons keep him active, both mentally and physically, and I cannot replicate that at home.</span></b><br />
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<b><span style="font-size: large;">This leads me on to special schools. I cannot make a sweeping statement in regards to every special school in the world being superb, but I make my own opinions based on the SN (Special Needs) schools J, and my youngest son W, have attended.</span></b><br />
<b><span style="font-size: large;">J has now reached the end of his schooling, and during this time he attended three SN schools.</span></b><br />
<b><span style="font-size: large;">His first was when he was just a little boy of three, and he started in their 'Rainbow' unit, which was a nursery setting, but in preparation for him beginning school there. This school was lovely. I remember how easy it was to get him his EHCP (Education, Health, Care Plan - formerly known as a Statement), and how the school was suggested, I visited, loved it, and he was accepted. This easy route gave me false hope of the future though, as since then it has been a lot more stressful trying to get him and his youngest brother further help that is essential to their needs.</span></b><br />
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<b><span style="font-size: large;">When we moved, he joined a new SN school. He thrived there, and to this day I am still in regular contact (and like to call them my friends) with several of his teachers and support staff, and they see J's development and progress as he has moved through his secondary school. That school has since grown and grown, not just in pupil numbers, but in the building space. It is testament to the quality of staff, leadership, and skills that that school is in great demand.</span></b><br />
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<b><span style="font-size: large;">His final school was different to primary, as it needs to be, and the shift from the cocoon of primary school to the more independent, 'hands off' approach was something I struggled with. J did at first too, (I wrote a post about it years ago, but to surmise he was placed in the wrong class setting - it was too academic, and expectations of achievement were far above his cognitive level). After requesting he be placed into a class that was aimed at his level, he thrived. His destructive self harming stopped (which had flared up when placed into the wrong class), and he loved going to school again.</span></b><br />
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<b><span style="font-size: large;">My youngest son's SN school is however my favourite by far. Maybe I am biased, as I am quite active within it, but the reality is that the school has the balance of education, care, staff, and leadership, spot on. When people give me the 'head tilt' and sorrowful expression when they learn I have two children with differing special needs, I tell them about the sheer joy and determination of all these children at their schools. The notion that a SN school must be quite sombre and sad is most definitely the opposite.</span></b><br />
<b><span style="font-size: large;">Being within this school's grounds makes you happy. It is joyful to see all the children, many with complex health needs, being loved and respected by everyone else - staff and fellow pupils. </span></b><br />
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<b><span style="font-size: large;">I decided to write a post today, thanking all these people who work with our special children. I went around the houses a little to get to this point, but it is something that needs to be said.</span></b><br />
<b><span style="font-size: large;">We as parents, no matter the child (whether they have a disability or not), need to have trust in our school's staff, that they will care for our children just as much as we do.</span></b><br />
<b><span style="font-size: large;">Special education staff (especially those who are involved with my children) are an elite group of people, who work tirelessly to support the children in their care, and who champion every achievement, every success, every 'little' goal, and who treat all the children with respect.</span></b><br />
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<b><span style="font-size: large;">I will finish on a short poem/quote I came across recently, that resonates with me quite deeply. I had it applied to two gifts I had made by a lady who hand stamps letters onto metal, and gifted them to two specific people who work with my youngest son, and for whom I have so much admiration and respect for. They both have an innate gift of seeing the potential in special children, encouraging them to be their best, and I wanted them to know just how much I think of them.</span></b><br />
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<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-33832247238996300792018-07-15T17:36:00.001+01:002018-07-15T17:36:28.068+01:00A Major Decision Decided In Secret<b><span style="font-size: large;">Throughout the UK, most, if not all local councils, offer a transport solution for children that attend a special needs school. These vary from council to council, but most are either a taxi cab, or a larger 8 seat van, with some being modified to transport children who use wheelchairs, or have mobility needs.</span></b><br />
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<b><span style="font-size: large;">Quite by chance, I was visiting my local council office to discuss my youngest child's EHCP (Education, Health, Care Plan - formerly a 'Statement of Special Needs'). </span></b></div>
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<b><span style="font-size: large;">As I sat in the plush lobby, with a lot of very important looking people hustling and bustling past with their lanyard identification cards dangling from their necks, I noticed a small screen TV, mounted high up, away from the main seating area, which displayed in a sequenced rotation, information about the local council and their plans. </span></b></div>
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<b><span style="font-size: large;">As I was sat, with time on my hands, as my appointment time had already overrun its scheduled start, I casually gave this TV glances every so often. It was on one of these brief glances that I saw something about a consultation around Post 16 transport. Post 16 means any child that is going to college, and who has an EHCP in place. </span></b><br />
<b><span style="font-size: large;">The rotation continued onto the next piece, and so I sat waiting for it to come back around. I took my phone out and prepared it for the camera, so I could take a photo of the screen, to allow me time to then read what it was stating. </span></b></div>
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<b><span style="font-size: large;">Luckily, as my appointment was still running late, I managed to capture a photo. </span></b></div>
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<b><span style="font-size: large;">The information on the screen told me that the consultation would end in two days time. I had not been made aware via mail, email, telephone, or any other means, about this. I made some enquiries, and discovered that those that would be directly affected by their proposals, had not been contacted at all, and very little had been done to publicise it all.</span></b><br />
<b><span style="font-size: large;">I have the feeling that despite formal consultations being there for people who may be affected by certain proposals, and allowing for opinions, views and debates, there is a tendency to keep them as closed and as secret as possible. Is this democratic? Does this reflect their values of giving vulnerable people of society a voice? </span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">That evening I duly completed the online form, giving my opinions, but feeling that despite opposition to their proposals, it would be futile. </span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">In the details about the time frame for their decision, it was clearly stated they had to legally publish the results before a set date. This date came and went, and upon calling up to speak to someone, I was told that they were still debating the issue. They had 10 weeks from the close of the consultation to make this decision, and it took a further 4 weeks until they had an answer. </span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">This then impacted on any applications for Post 16 transport requests, and yet again, a further 'exceptional circumstances' required form was required, but was not forthcoming, and the closing date for this was a mere few days away. </span></b><br />
<b><span style="font-size: large;">I can be cynical at times, and it appears to me that as many obstacles, delays, and assurances were used to pass this new rule, and to hinder those that potentially could qualify. </span></b><br />
<b><span style="font-size: large;">For those that do 'qualify' for transport, there is a cost, which is a block amount for set miles, and increases with each mileage band. The cost can be over £1300, which is demanded up front, with no option to pay monthly. </span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">I have begun to hear from other parents that they have been refused their new transport request, with reasons being given such as - 'the child's college choice isn't the closest to their home'. </span></b><br />
<b><span style="font-size: large;">What needs to be remembered is that these children have special needs, and therefore their closest college may not have the additional support and guidance, and even courses that these children can receive. They have chosen a college that fits their needs, but this is not considered by those in power. </span></b></div>
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<b><span style="font-size: large;"><br /></span></b></div>
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<b><span style="font-size: large;">It has been suggested by those that oversee the transport that J should receive a concessional bus pass, and he should get to his college via bus. Considering it further, J still has very little road sense, and would not understand about delays, different buses for different routes, and would more than likely be vulnerable to abuse from strangers for his 'weird' noises and behaviours. He could even get off at any stop, see a shop, walk in, and take some food or drink and walk back out again. He's not competent in making his own way to college, and needs to have transport fit for his needs. </span></b><br />
<b><span style="font-size: large;">I will also quash the option of him being transported by myself every day, as I have another school run that is in the opposite direction to his college, and I cannot be in two places at once. The other school run child is too young to make their own way to school, as they'd have to use two buses and a train to get to their school, and have a long walk along a dangerously fast road (which doesn't have any barrier between road and pavement). </span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">I will find out shortly if J qualifies for transport, and I'm prepared for the struggle to appeal their decision. I am keeping some hope that it will be good news, and am keeping in mind that I will have to telephone them to ensure nothing has happened to his application, or decision, such as being 'mislaid'. </span></b></div>
Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-631460189487527872018-07-08T15:44:00.000+01:002018-07-08T16:10:51.233+01:00Leaving School For College<b><span style="font-size: large;">The day arrived. </span></b><br />
<b><span style="font-size: large;">One I had never believed would come around as quickly as it did. </span></b><br />
<b><span style="font-size: large;">My Boy had finished school. For good. He is off to college. </span></b><br />
<b><span style="font-size: large;">How did this happen so fast? Where is my little boy who looked so small and innocent in his new school uniform, not wanting to look at the camera and smile, all those years ago?</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">We all know (and hope for) these milestones to happen, some of us wish for them sooner than others, but nothing can prepare you for the emotions you experience around your child being at the end of their schooling. The cocoon of a special needs school. The warmth. The acceptance and understanding. </span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">The big wide world is out there, and whereas other children who have completed their exams, are now off celebrating with their friends and enjoying the freedom, my Boy doesn't feel any relief, or sadness. He doesn't want to go off with his friends, and attempt to buy alcohol and impress the girls, or boys.</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">J's school had a whole week of celebrating the end of school for Year 11's. Each day they went somewhere exciting and fun. A big theme park, a BBQ in the forest, trips out, and a Prom. </span></b><br />
<b><span style="font-size: large;">The Prom didn't hold any excitement for J.</span></b><br />
<b><span style="font-size: large;">He wasn't aware of what it was, or when it was happening.</span></b><br />
<b><span style="font-size: large;">I had chosen a lovely pale (olive?) green, short sleeved shirt, and some smart black trousers for him to wear. </span></b><br />
<b><span style="font-size: large;">As with a lot of new clothing, J tried it on, and then promptly hid it, which is his way of telling me that he does NOT want to wear it! </span></b><br />
<b><span style="font-size: large;">So, five minutes before leaving the house, I encouraged him to get dressed into the clothes, and he had no choice about changing out of them, as he knew he had to get into the car.</span></b><br />
<b><span style="font-size: large;">On the drive there, he was repeating, "<i>hello Prom</i>", as I had told him that was where we were going. </span></b><br />
<b><span style="font-size: large;">It was only half way there that it dawned on me - he doesn't know what a Prom is. He may well be saying "<i>hello Prom</i>", but it could be anything. I could be taking him to a new shop, or meeting a person called Prom.</span></b><br />
<b><span style="font-size: large;">So I said, "<i>J's going to a party</i>!". He understood this, as he repeated the word "<i>party</i>" back to me, and then said "<i>cake, blow out the candles".</i></span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">The Prom was lovely. Very lively, with the children dressed up beautifully. A lot of the staff where there, not just the teachers from the Year 11 classes. </span></b><br />
<b><span style="font-size: large;">All of the children were accompanied by their parent/s or carer, which in the eyes of a lot of Proms isn't much fun, but the children needed a little help with certain things, and it made it easier to keep everyone happy, and enjoying themselves.</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicdWipWLvYiMeSjC0sycUKszXxlC79WUQ30d4xcREPqNlsaYTTUWwrsPIlunJ2AiWt0UGY7DmpXHhetjJYtD3wAMUOg9rc-CQ8c9lW-6J-oDrANq_YALotjMCz-oyLGOt3vWOMVkmydN9E/s1600/36838693_10155978481346936_7879869987077226496_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><b><span style="font-size: large;"><img border="0" data-original-height="960" data-original-width="540" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicdWipWLvYiMeSjC0sycUKszXxlC79WUQ30d4xcREPqNlsaYTTUWwrsPIlunJ2AiWt0UGY7DmpXHhetjJYtD3wAMUOg9rc-CQ8c9lW-6J-oDrANq_YALotjMCz-oyLGOt3vWOMVkmydN9E/s320/36838693_10155978481346936_7879869987077226496_n.jpg" width="180" /></span></b></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: large;">J sat outside, enjoying the sunshine, at his Prom.</span></b></td></tr>
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<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">After an hour, J had had enough. We had posed for the obligatory photos, drank some cola, nibbled on the buffet, and worked our way around the staff to thank them for all their dedication into J's life at his school. </span></b><br />
<b><span style="font-size: large;">We left early, but it was the right time to leave for J.</span></b><br />
<b><span style="font-size: large;">The second we stepped through the front door at home, he stripped off, and got dressed back into his usual clothes!</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">In the morning I was sent a link to our local newspaper, and in the side bar, with the heading of J's school Prom, was a photo of J! I was overjoyed, but also shed some tears (I'm a wuss when it comes to the pride I feel about my boys and their achievements). </span></b><br />
<b><span style="font-size: large;">Out of all the wonderfully dressed children, my Boy was chosen to be the lead photo. I had worried that he wasn't as smartly dressed as the others, but knew that he would not have tolerated a suit, a tie, a bow-tie, or anything 'jazzy'. </span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">That morning was also J's 'Leaver's Assembly', and it was very hard to not cry (I'm not one for public displays of crying). </span></b><br />
<b><span style="font-size: large;">On a huge projector screen, in front of all the parents, school leavers, staff, and a few other classes from the Year below, we were shown photos of our children, right from their first year at that school, all the way through to now. I could see a lot of tissues being dabbed around eyes, whilst I determinedly blinked mine back.</span></b><br />
<b><span style="font-size: large;">It was beginning to 'hit' a lot of us - realising that our 'babies' were all grown up, and how much they have grown and developed over the last five years.</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">Each child was called up to the front, where the Head Teacher presented them with a 'Record of Achievement' book (it contains all their certificates over the last five years), a huge wooden framed photo of all the Leavers, and an A4 booklet which had a lot of their photos in, as groups. </span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">When J was called up, he didn't turn around to face the audience (some students didn't want to). </span></b><br />
<b><span style="font-size: large;">After being presented with the above, the Head proceeded to tell everyone how much J has grown at school. He said he'd never forget J's turn as the Giant, in Jack and the Beanstalk (where he put a very funny spin on the "<i>fee fi fo fum</i>" speech, and made everyone laugh), and I could see both children and adults laugh at this, recalling this from the Christmas concert last year!)</span></b><br />
<b><span style="font-size: large;">He described J as a 'gentle giant', who doesn't like large crowds, needs his space, but is kind, helpful, and a comedian in his own way. </span></b><br />
<b><span style="font-size: large;">As the Head was about to tell everyone where J is going off to college, J walked off, back to his seat, which again had people laughing, as the Head said, "<i>well J has obviously had enough of me talking!" </i></span></b><br />
<b><span style="font-size: large;">My Boy can make people laugh just by being himself. Whereas we would be polite, and wait, J thinks to himself, "I've had enough, I'm off". He's honest at least!</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">As the cliche goes, it's the end of an era. </span></b><br />
<b><span style="font-size: large;">We are moving rapidly towards the end of his education completely, and that is where my worries about what he will do, where will he go for stimulation and entertainment? A day centre once a week isn't going to keep him occupied and active. I know I will be proactive and search out what there is for him when the time comes, and I can only hope there will be something suitable. </span></b><br />
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<b><span style="font-size: large;"><br /></span></b>
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Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-40163085932096086512018-06-16T11:30:00.000+01:002018-08-11T19:44:05.386+01:00Encouraging Their Dreams And An Inspiring Graduation Speech From Sef Scott<b>I have always championed my children to try their best, and not to give up, or give in. My youngest son, who is 8, and has a visual impairment, mild speech impediment, and potentially a mild processing disorder (he can forget things quite quickly, if he's given too much information at once), wants to be a fire fighter when he's grown up. At the moment, I am not telling him that he will not be able to drive when he's an adult (his VI is too severe ), as I feel he is too young to comprehend this, and I do not want to hinder his enthusiasm for life. However, I will encourage and support him to fulfil his dreams - he can still work within the fire brigade, just not at the front line. In fact, he could do almost anything, with the right adaptions (large print), and there is no reason he shouldn't work hard to attain his chosen career.</b><br />
<b>It may appear that his disabilities will hinder him, but he is receiving an amazing education from his school, and they are unlocking his potential, and so I remain positive that he will continue to develop and learn. </b><br />
<b><br /></b>
<b>As for J, his work choices are a lot more limited, but they are not diminished. J can follow guidance, and is methodical in his approach. He gains a lot of pleasure from the outdoors, as do I, and what can seem boring tasks for another person, J enjoys - examples being - he loves sweeping leaves ( "<i>sweeping de leaves</i>" as he calls it) , pruning bushes (with adult supervision - I've taught him how to do it safely), and I will be teaching him how to mow the lawn (we have a petrol mower, which means no danger of electric shocks from cutting the wire). </b><br />
<b><br /></b>
<b>J is very strong and tall, so he can touch the ceiling, without needing a step ladder or stool. He can reach objects high up, which is very handy, but also means I have to find more ingenious hiding places for things I don't want him to have! He can lift and carry things, and follows basic instructions of where to take them. </b><br />
<b><br /></b>
<b>J will be starting college in a few months time, and thankfully he has been placed at the outdoor learning unit, which is based at a small farm. This, I am hoping, will bring about more opportunities </b><b>for him to do the things he loves, and learn more, and potentially find a little part time work / voluntary work, that he can continue with when he leaves. </b><br />
<b><br /></b>
<b><br /></b>
<b><br /></b>
<b>Finally, I want to share with you an amazing, uplifting, and inspiring 6 minute video, from a graduation student at Plano Senior High School, Texas, that I watched. </b><br />
<b><br /></b>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYSheJtTE35b6C_FvDpQ4zZskTTLrhJDHlzbd7Ffmng5z1p3PpOoN0ZgpjTCM4TemYknJ03J-5wk1Xtqe42i5yUrvL0xn0q9XksnUF6i5_339lmJqyiS57Pd_f187vgDf2z07rqWDNDELY/s1600/1528988494945.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="524" data-original-width="931" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYSheJtTE35b6C_FvDpQ4zZskTTLrhJDHlzbd7Ffmng5z1p3PpOoN0ZgpjTCM4TemYknJ03J-5wk1Xtqe42i5yUrvL0xn0q9XksnUF6i5_339lmJqyiS57Pd_f187vgDf2z07rqWDNDELY/s320/1528988494945.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sef Scott<br />
Plano Senior High School<br />
2018</td></tr>
</tbody></table>
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<b>The student's name is Sef Scott, and he has autism. His graduation speech is wonderful, and I highly recommend that you watch it. I hope his words make an impact on the world, and inspire others to follow their own path, and work for their dreams. </b><br />
<b><br /></b>
<b>You can view the video <a href="https://www.youtube.com/watch?v=y3S-W5TYtNY" target="_blank">here ( Plano Senior High School, 2018)</a></b><br />
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Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-70142332511753211082018-06-14T20:32:00.000+01:002018-06-14T20:32:16.355+01:00The Switch From DLA to PIP<b><span style="font-size: large;">The time has come for J to be recognised as an adult, in the eyes of his disability payments. As he is now 16, he has to move from Disability Living Allowance (referred to as DLA from now on), onto Personal Independence Payments ( referred to as PIP from now on). </span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">We had a home visit by an assessor, who needed to see myself and J, to make a decision around whether he was capable of taking over his money, instead of me handling it on his behalf. </span></b><br />
<b><span style="font-size: large;">J was prompted by me to say "hello" to the assessor, and then proceeded to march in and out of the room, playing the Teletubbies intro theme tune on his iPad, burp with a lot of voracity, and say "pardon mummy!" in a <i>very</i> loud voice. He was just being himself!</span></b><br />
<b><span style="font-size: large;">The home visit did go well, and the assessor quickly recognised that J has no concept of money, it's value, or what DLA or PIP is all about - and she was not fazed by his lack of awareness or manners.</span></b><br />
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<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">Soon after he turned 16, I received a letter from the PIP department, inviting me to begin his claim - as DLA has to stop at 16 (no exceptions). I telephoned the number at the head of the letter, and was greeted with a recorded voice, informing me that the number had now changed - the same thing happened when I called up about the assessor visit, three months prior! They are still sending out letters with an outdated phone number on - not something you would expect from such an official place.</span></b><br />
<b><span style="font-size: large;">Perhaps they have a bulk lot of these headed papers, and are using them up, before they begin using the correct ones?</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">The initial PIP claim (on the telephone) took around 25 minutes, and was pretty straightforward. Just ensure you have all the details of your child's GP, a specialist (if relevant), and your bank details (presuming that you, the parent/guardian, has been assessed as adequate in handling the child's payments) ready, so you are not fiddling around trying to find this information whilst on the call</span></b><br />
<b><span style="font-size: large;">There will be forms for me to fill out, on J's behalf, as well, and I was told these should arrive within two weeks.</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">I was informed that J's DLA would stop within 4 weeks of this phone call. However, I have since learnt that if your child has an 'indefinite' DLA award (there is no end date for you to have to re-apply and be reassessed for your DLA award money), this information is incorrect. There should be no stopping of any DLA on indefinite claims, until the PIP claim is sorted, and payment has been scheduled.</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">What did happen however was that J didn't (or rather my bank account didn't) receive his due payment of DLA. After chasing two phone numbers up about this matter, I was told that his DLA payment had been rescheduled for two weeks later, and the payment would be different - they are presuming that the PIP will be in place by then - however (!) the four week time period that is given for a new PIP claim, does not ever run to this time frame, and usually lasts a fair few more weeks, if not months - even if you submit all paperwork in good time, and have completed everything asked of, with no delay. </span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">So we are in limbo at the moment. I'm waiting for the paperwork to arrive, and am anxious to get this sorted and in place. I have a little nagging worry that there will be more hiccups, telephone calls, chasing up answers, and maybe even a decision that J will not be awarded PIP (which is unlikely due the severity of his learning difficulties and need for adult supervision 24 hours a day, but it could happen).</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">I will hopefully have a positive update on here soon.</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<br />Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-48900120319675638782018-06-04T17:45:00.000+01:002018-06-04T17:45:20.386+01:00J And The Neighbour's Parcel Deliveries<b><span style="font-size: x-large;">A funny little thing happened recently with J, a parcel delivery for my neighbours, and the 'help' he thought he was being to me. </span></b><div>
<b><span style="font-size: x-large;">I have a usual routine of removing the name and address labels from every parcel I receive for us, as soon as I've removed the contents from the box, so that it can be squashed and put into the recycling. </span></b></div>
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<b><span style="font-size: x-large;"><br /></span></b></div>
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<b><span style="font-size: x-large;">One day recently, I took in two boxes for my neighbours, and put them in the kitchen to store until they collected them. I totally forgot about them, until I saw my neighbour's car in their drive. I went to retrieve them from the kitchen, and found two empty boxes, labels removed, and the contents piled neatly on the side.</span></b></div>
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<b><span style="font-size: x-large;"><br /></span></b></div>
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<b><span style="font-size: x-large;">I quickly packed everything back into the boxes - luckily he hadn't squashed them - and scuttled over to my neighbour, with a pained and embarrassed look on my face, which she looked quizzically at me for. I hastily explained what had happened, as I handed her deliveries over, and she was very understanding, and even laughed ; </span></b></div>
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<b><span style="font-size: x-large;">When we first moved into our house, she introduced herself within a few hours, and produced a lovely bottle of red wine to welcome us into the small cul-de-sac, and I explained all about J and his 'funny' ways and special needs - so she was really unfazed by his latest antics. </span></b></div>
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<b><span style="font-size: x-large;"><br /></span></b></div>
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<b><span style="font-size: x-large;">It was only later on in the evening that this thought occurred to me - thank goodness her deliveries where nothing embarrassing, or of a sensitive nature! I don't think either of us would be able to stop and have a little chat every so often, or even pass pleasantries as we head in and out of our houses, without blushing. </span></b></div>
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<b><span style="font-size: x-large;"> </span></b></div>
Unknownnoreply@blogger.comtag:blogger.com,1999:blog-7504398289166929770.post-70013173051154259242018-05-29T12:53:00.000+01:002018-05-29T12:54:20.430+01:00A Scary Night For Me And My Boy<b><span style="font-size: large;">A small update on my Boy...</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">Last night, at around 1.30am, I awoke with a sense of foreboding. I got up, opened my bedroom door, and was greeted with the distressing noises of J choking and having another 'episode'.</span></b><br />
<b><span style="font-size: large;">He had blood seeping down his nostrils, and out of his mouth, as he had bitten his tongue. He was choking on blood and mucus.</span></b><br />
<b><span style="font-size: large;">I managed to clear his mouth, and held his jaw firmly, pushing my own body against his, to try and keep him in a half recovery position. This was tricky as he is such a big lad, his bed is a soft, king size, making it more difficult to turn him, and I was trying to take his pulse, blow on his face to cool him down, wipe the blood and mucus away, and talk to him to reassure him I was there (if he is aware during these episodes I want him to know mummy is there for him).</span></b><br />
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;">This was a very scary episode for me, as he was particularly noisy with his breathing, the choking, and how long it took him to recover this time. He tried to get up when he had come round, and wanted to use the loo. He couldn't stand without support, and then in his confusion he attempted to go down the stairs - which would have resulted in him falling down them and ending up with even worse injuries.</span></b><br />
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<b><span style="font-size: large;">This morning, he is unable to talk properly - I know he has speech and language difficulties as it is, but he cannot even say the words he knows, without sounding as if he has cotton wool plugged into his cheeks. He is clearing his throat a lot, and just isn't the usual J. He looks really poorly. I've medicated him, and am just having to keep an extra eye on him.</span></b><br />
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<b><span style="font-size: large;">The frustrating part is, that we have been told to only call the ambulance if an episode continues on for longer than 20 minutes, and even then, when they arrive, they make the decision not to transport him to hospital, as it would be even more distressing for him. I agree with them on that. Waiting around in a noisy, crowded, hot, bright hospital is not conducive in helping to make J better.</span></b><br />
<b><span style="font-size: large;">We just have to wait until next month for his MRI scan to find out if there is anything going on in his brain that could be causing these episodes.</span></b><br />
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<b><span style="font-size: large;">On a brighter note, J loved his presents. He is finding comfort in pressing the 'Tubby Custard' train to make noises, and as the picture below will show you, he has lined up the 'Tubby toast' set, with cups and saucers, in his preferred pattern of colour.</span></b><br />
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