Channel 4 (UK programme channel) are running an on line test for people, to assess whether they show traits of autism. The test lasts around 5 minutes, and breaks down into different categories.
It is not a tool to diagnose yourself or someone you know, but it does give interesting result readings and information.

  The programme is hosted by Anna Richardson 

 who meets leading experts to explore deeper into autism. 

When J was a toddler, and he was not reaching communication milestones, our journey began. As is usual, it started with a hearing test to rule out hearing loss as a reason for his lack of speech and understanding.
I have mentioned before in my blog, that we then saw a specialist who saw both myself and Joseph in her office for around 15 minutes, and handed me a leaflet about autism, and telling me that is what he had.
I went home a little shocked and in denial ( denial from not knowing anything about autism ), and got out my huge A-Z family health book. Under autism was a small paragraph telling me what J would never be able to do or achieve - No marriage. No relationships. No career or job. Unable to live independently.
That was it. There was nothing at all positive or inspiring. It was incredibly negative.

That was all the information I had. A leaflet informing me the same as what the A-Z family health book was telling me. The Internet was not as freely available and reliable as it is now, and I had no way of accessing anything on line - and I doubt there would have been much anyway, as there was no real hub of social media and information portals. Back then it also took five minutes to download anything as well. It was almost archaic as to what we are all so used to now.

We moved soon after, and the new GP we registered with said a snap diagnosis like that was not the norm and we would have to attend a weekly assessment session at a child centre, for a year, before a formal diagnosis was given.

The weekly sessions were hard in some parts for me, as I attended classes to teach me more about autism, (whilst J was being observed in their play room) and the reality of a new world of special needs was daunting and intimidating.

As is obvious by my whole blog (!), J was given the diagnosis of autism.

Since that time, 13 years ago, a lot has happened in the knowledge, and acceptance of autism.
Television dramas feature characters with autism or Aspergers, there are thousands upon thousands of support groups for parents who have children on the spectrum, Joe Bloggs in the street has heard about it, and most probably knows someone who knows someone who has ASD. This is a big leap from the closed door, dark room feeling back then, but there is still so much to explore and discover, and of course we can never stop educating people about autism, and indeed any special need.

This is the link to take you to the Channel 4 website that is hosting the test. We can only learn and develop more understanding around autism, by research and study, and the more people do this, the more we can discover.


Below is the blurb I have copied and pasted from the website. I did not write this, alter or modify any part.

How Autistic Are You?

Think you might be autistic? Struggle with social interaction, maintaining eye contact, or understanding the expressions and gestures of those around you? Do you have difficulty understanding other people’s feelings and managing your own? Or perhaps bright, loud or crowded places make you anxious? Maybe you feel like you don’t fit in…. like your brain is wired differently to other people. If any of this strikes a chord with you, then you’re not alone. Theory and research suggest that autism is a spectrum, with autistic traits distributed along a spectrum in the general population. This means, to a certain extent, that everyone has some degree of autistic traits.

How Autistic Are You? is a new Channel 4 programme from betty aiming to demystify one of Britain’s most misunderstood neurological disorders. Featuring leading experts and people from the autistic community, the programme will present a new way for viewers to visualise where they are on the spectrum of autistic traits, and a team of autistic people will also take to the streets to try to teach the public what it really means to be autistic.

To help our understanding of how autistic traits are spread across the general population we would like your help with some research - we want to know what autistic traits you have. Professor Simon Baron-Cohen is a world-renowned pioneer in the field of autism research with over 30 years experience. He has authored over 400 scientific papers on his ground breaking research and is the director of the Autism Research Centre, at the University of Cambridge.

As part of their work at the Autism Research Centre Professor Baron-Cohen and Dr David Greenberg have designed four short questionnaires (40 questions in total) to identify different autistic traits. The first three questionnaires examine your behaviour across three areas of autistic traits – Sensory, Social Interaction and Organisation & Routine. The fourth questionnaire examines your overall number of autistic traits. It is important to understand that none of these tests will diagnose autism – only specialist doctors and professionals can clinically diagnose autism. These tests will only help to identify traits.

Once you’ve completed all four questionnaires, you will receive a score that will reveal how you may compare against the general population and the autistic community. You will be asked at the beginning of the test if you are willing for your data to be used anonymously by Cambridge University as part of their ongoing academic research into autism that will also feature as part of the programme How Autistic Are You? You will not be asked for your name or any contact details as part of these tests.

The anonymous data will be used within the television programme. We will group the results together, such as male versus female ; occupation breakdown; diagnosis and by UK region – no individual results will be revealed. Cambridge University will also only publish anonymous results. Further details of betty’s privacy policy can be found here(this link will open in a new window) and details about the Autism Research Centre can be found here(this link will open in a new window).

Taking all four tests will only take you five minutes in total. You must be 16 or over to take the tests.

Awarded Pupil Of The Term!

As I have written before, J is unable to communicate to me any feelings, emotions, likes and dislikes, news, or even just have a chat. It is guess work on my part, in trying to figure out what he wants, if he is in pain, if he has a problem etc.

I rely on a 'home - school' book which I or the teacher can write in, and pass messages between us or let each other know what J has been doing.
At the end of the school term a few weeks ago, J's school bag had a laminated A4 certificate inside. It had his photograph on, and the wording stated he was the 'Pupil of the Term' for his school. He also had a gift voucher as a prize.

I exclaimed out loud to him when I read it, and showed him his certificate. He looked nonplussed and walked away - just what I expected would happen. In his 'home - school' book, it told me that he had had a special assembly and he went up and received his prize and certificate in front of the whole school. I can envisage that he walked up, took it, and walked off again. It doesn't mean anything to him, but to me it proves what an amazing young man he is, and despite his brain functioning on a different level, he still strides ahead with his enigmatic personality and hard work.

The school is fairly large in scale of pupil population, and so this is something I am extremely proud of.
My Boy is a very underestimated, understated young man, and is so much more than just a label of autism or special needs.  He is a super star! 

Foreword - Please Click To Read

               

I am a mum of three sons aged 17, 13 and 9, so life is hectic, fun, and a little bit crazy.
I started this blog on March 27th 2010, but only now have I been given an option to attach a welcome post to the top right of my page. So when reading from the beginning, my children were a lot younger (my youngest being only a few weeks old!)

I must apologise for my spelling, grammar, and punctuation during the early years of writing this blog. It is not something I am proud of, but thinking back, I would write my posts with a baby feeding in my arms, or asleep in my arms, or asleep in his crib for the total time of three minutes, two other children demanding attention, two very naughty dogs, and a house that created mess by just walking in and out of a room, whilst forgetting what it was you went in there for. I did all this by myself. I raised my boys by myself. When you have no choice, you just get on with it and do your best. So, my writing took a back seat, and my proofreading was little to non existent. 


My eldest son is 17, 6ft 3in (and still growing!) and has an autism diagnosis, alongside severe learning difficulties, and impaired communication. He is a cheeky, funny, arty boy, who challenges out dated opinions and views surrounding special needs. People remark to me how happy he is. He can be found strolling around the garden singing his repetitive songs ( most are unrecognisable to strangers, but I've heard them for years and despite him not being able to sing the words correctly, he has rhythm and tone). He was my inspiration for creating this blog.

My middle son is 13, going on 19, and is classed as 'neuro typical'. He likes football, music, playing on the X Box 1, and perfecting the art of not listening to me, but managing to ask for food every three and a half minutes. 
He struggles to be in the middle of two brothers who have special needs, and I find myself constantly at war within myself thinking I am not giving him enough attention, but not wanting to over spoil him. I often remark about the long waits for appointments for the other two to see specialists, and the funding cuts that continue to be implemented by this Government,  but there is even less support or help for children like him, such as youth groups for young carers or those with siblings with special needs. 

The youngest is 9, and is another budding artist, who draws designs to then bring to life with boxes and other items. His imagination knows no bounds, and he astounds me with some of his creations and stories.  He is lively, chatty, and incredibly loving, and tells me he loves me, on average, thirty seven times a day. 
He has a diagnosis of nystagmus and ocular albinism, alongside a slight speech delay ( which does not deter him from chattering non stop and asking questions). He has been attending a special needs school for 18 months, and they have been tremendous with him. He is a little whizz at maths, and his reading and writing has developed enormously. He loves attending school, and if I'm being frank, I've never come across such kind, loving, inspiring, and exceptionally dedicated and talented staff before, so it's no wonder he is eager to attend every day, and loves to talk about his day with me. 

As for me, I am 41, but despite having 3 sons, I still feel 19 on some days. I am an avid reader of books (not Kindles as I love the feel and weight of a proper book, and page turning), I adore cheese, I used to play the violin in a youth orchestra, sing opera for my county, and I'm a huge music fan and love all genres of it.

I have had many challenges and personal battles to deal with (many before I even had children) in my life, but I always try to remain positive, upbeat, and smile. I find joy in giving to others, be it a compliment, advice (which has been asked for), gifts, or just my time. 
I've received many hundreds of emails over the years, and have made dozens of friends from around the world, who stay in touch via email or other social networks, and I'm so glad we have this technology available to us, to enable us to learn, connect, and support one another in the confusing, stressful, and roller coaster life that is being a parent to a child with special needs.

Thank You For Stopping By

Sensory Issues That Affect The Whole Family

As I have been a mother now for nearly 15 years, I thought I was quite attuned and 'in touch' with my children, and their needs and wants, however I was abruptly reminded the other day, that I can never know it all, and sometimes I should not just 'think' I know my children inside and out, but actually ask them more often how they feel.

As we moved recently into a new area, we have changed 'professionals' who are involved with the children who have special needs. We have had one such person visit on several occasions, to assess the level of need of each child, and myself, (as parents and legal guardians can get worn down and desperate at times too).
On the last visit, which was for her to be able to complete her assessment and submit it to a panel of 'experts' (note my usual sarcasm at that word), she had some questions for the children. Despite her seeing on her last visits that J is not capable of answering a question, as he will reply to you with the very question you have asked (echolalia), she asked again if she could talk to him. It makes me chuckle seeing him being his normal self, and not giving her the answers she had hoped for. She can see, and this is something that is noted by so many people, that J is an extremely happy young man. Yes, he has some days where he is more stompy on the stairs, getting stressed about the noise levels of his younger brothers, or the fact I will not allow him any more cola, but that I put down to hormones and him being a teenager, but in his whole self, he is contented and happy. He sings his songs ( repetitive ones he's sung for years), laughs, smiles, and is a laid back, chilled out boy.

When she spoke to the other two, she asked them if they wanted to go into a different room, away from me, to allow them the freedom to talk about how they feel, and without them worrying they might upset me, but both boys replied "no".
I was pleased they felt comfortable enough to do this with me, as I have always maintained to them that how they feel about having a brother with such a high level of special need is not wrong. Their feelings are valid. It is hard. It can be draining. It is restrictive. However, it is not bad or wrong to feel this way at times.

The youngest one, W, who has a lower lever of special need, but is still quite demanding in his behaviours, spoke first, and he spoke generally about J sometimes going on and on about wanting cola.

It was O, who is nearly 11, who opened up candidly about his feelings.
Most of the things he spoke about, I was aware of. Things such as how he feels people stare at us when we are out, and point or make out they are talking about us. How we have to plan trips to the playground around the less 'peak' times, so that it is not too busy, and J can get on to a swing, and not have to stand around getting stressed.  He feels embarrassed that he has brothers who have special needs, and he doesn't like to talk about them at his school - I believe he can be just himself, O, at school. Not O "who has the brothers with special needs."
Then he was asked what he doesn't like the most about J, and his response has resonated through me for the last 24 hours, mainly because I didn't think it affected him, and now I feel guilty that I should have known...


J has, for the last 6 weeks or so, been making himself sick. It is something he used to do around 8 years ago, whereby he would steal a 2 litre carton of milk, drink it all as fast as he could, and then vomit it back up, whilst laughing. At that point, I had to hide food and drink from him, as he would eat until he made himself vomit. It was disgusting. He'd do it in the garden, on the carpets, in sinks, everywhere. We looked into Prader Willi syndrome ( PWSA link), as a GP believed his over eating was linked, and the vomiting was a symptom of that, but it was a dead end. It faded away within a few months, and I thought (or rather hoped) that was the end of it forever.
So, to hear him being sick in the toilet that first time, nearly two months ago, I thought he had a bug or virus.
But he was laughing about it. Whenever he has been sick through a virus, he is curled up and has a fever.
Over the next few nights, I would hear him being sick in the toilet, followed by lots of laughter and jolly chattering.
I tried to follow what a psychologist had told me to do before, which was to ignore, but after the first week of nightly vomiting, I had to intervene. I told him "no" when I heard him begin the coughing that he does to start it off, and he'd vacate the toilet, but, I cannot be on watch 24/7, and sure enough I'd hear him doing it again, usually when I was tied up with one of the other children.
As we are reaching the end of the Easter school holiday, J has had the days as well as the nights to make himself sick. He has resorted to drinking a lot of water from the tap to help him, as I have had food and drink locked away again in our new kitchen (solely for the purpose of not allowing J to steal food - despite him not having PWS and the vomiting stopping the first time 8 years ago, J would still steal as much food as he could, and proceed to eat it all as fast as he could, so I had locks in the previous house to stop this, and had to do the same again in our new house.)
His forced vomiting has not abated, and I am getting increasingly worried about the impact on his health.
He is not a slim boy for starters, which helps I suppose by him not becoming desperately weak and thin within days, but he is losing nutrients and the stomach acid cannot be good for his teeth and throat.
We have a long wait to see the psychologist, and the GP cannot offer much help, as this is not in the realms of offering counselling or simply explaining to him the damage he is potentially causing to his body.
I will be talking to his school when term begins, as I require them to monitor him during the time he is in their care. I am not asking for someone to shadow him all day, merely that an adult hover around the toilets when he uses them after lunch or snack time, and to listen out. Vomiting is not a quiet affair, and so the person doesn't need to be in that close of a proximity to hear if he is making himself sick. It is a few minutes out of a school day that I will be asking them to assist me. As it is a special needs school, I hope I am not met with reticence or hesitation.

I am not a medical professional, but I have tried to rule out any reason for the vomiting - blockage? Allergy? Indigestion from the rapid eating? Sensitivity of the stomach lining?
I have monitored him. Made notes in my phone. I am inclined to believe it is a sensory issue. As he has to urinate the second he feels anything in his bladder, I am persuaded towards linking this to his stomach - he feels it full, and enjoys emptying it out. Discovering that vomiting can excavate his stomach contents within seconds has become a habit. A habit that he is enjoying.
I just have to put a time limit on this behaviour, before I have to demand more intervention from the professionals, but quite what they can suggest or implement is something I am sceptical about.

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So, to go back to O, and what he divulged, he said he hated hearing J making himself sick every day and night. It made him feel sick himself, and angry that he could hear J laughing loudly after each episode.
I never thought about the impact on the other two, and for that I felt wounded by my own lack of motherly instinct and care. I sat there, winded almost by his admission. I added this failure of my own doing to the growing list I have stored in my head.

I realise that I have to remember all of the children can be affected by something I (wrongly) presumed wouldn't do so.
It is hard for most people, including myself, to understand just how he gains enjoyment from this kind of activity, as for us, vomiting occurs from painful viral infections, tainted food or drink, or from excessive alcohol consumption. It is not pleasant and is not enjoyable. I myself have emetophobia ( useful info here ) and cannot understand just how and why he wants to do this, but I have to accept it and try and work with him in helping him to stop.

As for the gorging on food, he still tries all day, at any opportunity, to grab food and run. He stole one of his brother's Easter Eggs, in the speed of sound. We have to think constantly about hiding food from him (although J is like a blood hound and can sniff out the merest crumb of food from three miles away), locking it away, and watching him like a hawk when food is out for cooking purposes. This behaviour has been present for years and years. It never ceases. But as I said above, PWS has been ruled out before, as he does not present with any other classic sign or symptom.
I tend to explain it in this way -  J's trait of stealing food and eating it as fast as possible is similar to a wild animal or even out caveman ancestry - he doesn't know when his next meal is coming, and he believes if he leaves any for even the shortest second, it will be taken from him, so he grabs what he sees and runs.
As we have two Labradors, I also make light of their tendency to behave as if they are just one meal away from total starvation - there is never a meal shortage in this family, but the dogs and J would lead you to believe otherwise!

If you have any help or hints, please contact me via the link on the main page of this blog, or via my Twitter page. Thank you!

Journalism And Special Needs in 2017

Recently one of my children's schools were featured in a local newspaper article, and I proudly found the on line version, observing my son was a part of the photo they used.
Unfortunately my smile faded after reading the first paragraph, as the terminology used by the reporter was crude and outdated. The subsequent paragraphs failed to be anymore well written, and compounded my feeling that the reporter had no understanding about special needs, and equally important (for a writer) had little grasp on writing a sensitive and informative piece.

The print version of this article was written slightly differently, however the journalist still wrote with a naivety that harked back to an era where anyone who was slightly 'different' was ostracised from society, and called very inappropriate names.

The journalist was billed as a 'junior' which would lead you to believe that a senior reporter, and/or the editor would have (or rather should have) read through it, amended all of the poorly written, and quite frankly offensive terminology, and produced a highly polished piece, that was representative to the actual interview given to the reporter. Local newspaper, or national broadsheet, if you are seeking to have a career in journalism, you should write with knowledge and research, and not like a 13 year old from 1955.

I read, and re-read the article, and (as is usual for me) decided to do something about it. Yes I could have just brushed it aside, putting it down to me being over sensitive, but if, in 2017, articles like this can be approved for publication, how are we ever going to move forward in our fight to have people with a special need or disability accepted totally and without prejudice?

I emailed the Head of the school, explaining my sadness, and pointing out exactly what parts I found morally wrong. The Head of the school is highly pro-active and in touch with all of the students and their parents at school, and replied to me that evening. He took the reigns of this matter, and contacted the editor of the paper.
The Head also told me that the reporter had omitted most of the content from the interview he had taken with the school representative, which negated the purpose (in my opinion) of printing the article. The article (after hearing what was supposed to be written about) seemed even more badly cobbled together. How did this go unnoticed by the editor?

Within a few days I was forwarded an email, which came from the editor of the newspaper, which apologised about the content, the writing, and the out dated descriptions used by the journalist.

Very recently I was emailed again to link me to the completely re-written article which would remain in their on line pages. This time the article was sensitive, factual, and had no hint of an archaic attitude. The only copies of the original piece will be stored with people who have kept the newspaper.

I am glad I made the complaint. I could have been just another person who shrugs their shoulders and ignores, but that is not me. I have been a part of the special needs world for nearly 15 years, and I have seen the prejudice from society, heard the tutting, witnessed the staring and pointing, and been told in a variety of ways how bad a mother I am for having a child that just needs to have his disability slapped out of him.
We all need to continue to educate and inform those who have little experience of a disability, and continue to show that we are all human and we all deserve respect, compassion, kindness, love, and acceptance.

                                                                   Remember
                              Big waves always start from the smallest ripple.

World Autism Awareness Day and Month 2017

     

      Today is World Autism Awareness Day

                 

   And

    April is Autism Awareness Month

Let us all become more kind, loving, generous, and thoughtful. 

A Poem I Wrote Six Years Ago

I wrote the following poem in 2010, and have just read it again as I was spell checking old posts I have blogged.

My goodness me, my spelling, grammar, and punctuation were not tip top when I began this blog, and I am embarrassed by the simple mistakes I used to make. I am trying to correct them now, but it is taking a long time to go back into each post and correct all my mistakes - I will do it though!

This is the poem I have come across, and I thought it deserved a second blog post. I can't remember writing it, or what emotions I was experiencing at that time, but I feel good to say, that I no longer feel quite so blue ( the impression my words give me when I read them).


Is this it? 

Is this it?
Is this my life?
Day in day out,
Yet more strife

Just another mum,
Another room to clean,
Being the biggest presence in the house,
But never being seen

How far have I come
In living the dream
The childhood fantasy
That ran out of steam

If I sit here wishing
For days gone by
Will I miss the ones coming
Because I didn’t try

To see what is here
Is more than some get
That my life is not stone
It is not set

Time may slip by
In whispers of sand
But this is my life
That I hold in my hand

To cherish that bond
The one between child
The one that a mother
Can never hide

Be still my thoughts
Of a life that is not this
Because all that I have
I really would miss

Written by me, SpringyMum (Twitter) AKA Tor

Christmas 2016 and The Jaffa Cake Disappointment

Christmas 2016 has been and gone. We enjoyed a quiet one, just myself and the three boys (five boys if you count the two Labradors as well).

J has always been hard to buy for, as he doesn't have a hobby or interests, so it was the good old faithful iPad to the rescue. They usually last a year or so, before they become damaged or just not working efficiently.

The last 5 or 6 years, I have always managed to buy each boy (not the Labradors this time!) a metre stick of Jaffa Cakes, as a stocking filler, but this year, I only saw them around the middle to end of November, and as there seems to be no place left in the house to hide anything, especially food related, from the dogs, or from J and his Jaffa Cake sniffing ability,  I thought I'd hang on until the middle of December. Big mistake. Absolutely everywhere around here had sold out. Empty display boxes and no sign of them being restocked. I asked around. One lovely person in Sainsbury's even went off to investigate where the nearest Sainsbury's store had some, and the closest was over 100 miles away.

Online, such as Amazon, and clever people were selling them at three times the amount they cost to purchase from the shops. I know my boys love Jaffa Cakes, and it's been a tradition for many years for me to buy these metre sticks, but I am not forking out three times the amount, three times!


I have even blogged about something I called 'Jaffa Cake Mountain' nearly 7 years ago ( you can find that post here - Jaffa Cake Mountain. It is around two thirds down on that post).
Ironically, just before New Year's Day, a shop close by restocked their empty display box. The whole of that stock sold out in two days! I will be a more savvy shopper for next Christmas. If I have to buy them in September and hide them up the chimney, I will.



J also had a lovely school Christmas concert. His class performed a 'pantomime' to the story of the Nativity. J played the Shepard. Each child in the class (9 in total) played a character, and had a few lines or words to say, when prompted.

Each year I always predict J will do or say something funny, and off script, and Christmas 2016 was no different. He stood up when prompted, to say his first line, and his teacher was crouched facing the class, who were sat in a semi circle, on chairs. An assistant walked between the children, carrying the microphone and notes, and when she approached J, she lent in, and pointed to his teacher and told him to say his line. But in classic J style, he didn't say the correct line. Instead of saying - "I am a Shepard", he followed the assistant's pointing towards his teacher, and instead said - "I am Miss D*****". This caused the whole audience to laugh (in a positive way, not a mocking way) and I caught it all on camera!
I only have one more Christmas concert to go at his school, and that's it. He'll be off to college. It's quite a daunting thought, not only to have a child who is 14 going on 15, but that he'll be out of the school system and into further education. As I've discussed before, he will attend the school's follow on college, as it seems the most appropriate for him.

I have not made any New Year's Resolutions, as I know exactly what I need to do, and where my faults and failings lie, and as I spent last year working hard to get my local SEN team to give my youngest son his much needed 'Statement', plus dealing with some rather trialling family issues, this year is about giving myself some recognition for all that I do. I have another personal battle that has already begun, and my aim is to not allow myself to be consumed by it, but to keep my big smile, and positive attitude towards everything I encounter along the way.

Post 16 Discussion, Maths, and J's Continued Love of Art.

I had another Parent's Evening recently, and J is still progressing well in school. He is in Year 10 (UK) and would be beginning his GCSE's if he were in mainstream school.
I have had years to get used to the fact J would never take any exams, but he is learning a lot at school despite this. Every teacher he has had over the last few years has said the same - J is a compliant, happy, helpful member of the class, who adapts to change with ease, learns quickly a task or job given to him, and who is just a joy to be around.

I attended a 'Post 16' Open Evening at school as well,  which had local colleges and other accessible organisations there, to discuss what they could offer. As J is now 14 and a half, he only has a year and a half left of schooling. His special school does not do A Level exams ( exams between 16-18 years of age).
I know J will not attend a mainstream college, even with support, and this is fine with me. It looks likely he will attend the school's follow on college, which teaches further life skills. He already has jobs he does during school breaks, which can be either sweeping up leaves, washing up in the cookery room, or tidying away chairs. The older children share these jobs, and J does them without complaint. He is very diligent in his work.

J's maths ability has developed well too. He has always been quick to work out which bowl has the most biscuits in, but he seems to have increased in the speed at which he can visually count ( ie ; he sees different piles of the same object ) and can just look at something and speak the number. A good example is when I had a tray of roast potatoes in the oven (before he got home from school so didn't see me chopping them up and laying them out) and when I took them out in front of him, he said instantly - "22 roast potatoes". It's quite a skill he has.

Art is also still a passion for J. Using different mediums at school has helped him broaden his style.
This term he has been focusing on different tones of colour. I am sent photos of him doing his work, via an app that the school uses. I still encourage his love of art at home. He has free access to pens and pencils, paper and card, child safe scissors, glue, sellotape, and a mix of foam shapes and fluffy pom poms. I do keep the paint locked away, and put the glue away at night, as I don't want to run the risk of him being creative at 4 am in the morning, when I'm asleep, and I wake to find a new design on my landing wall, his bedroom wall, or even the carpet. This hasn't stopped him in the past, with one memorable design being created using a metal spoon that he scraped a pattern out on the wall that the stairs runs up and down with.
This is a link to the original post I made (with accompanying photo of the 'art work') - The Artist Strikes Again


                                        Mixing paint to create a variety of shades of green. 

Smiling away as he mixes paint to create tones of brown.

I have put some of his creations on this blog before, and I do display some of his work within the home. 

Some of his work is an insight into what he's thinking, but cannot convey with words. I still find it fascinating what he produces. Who knows, one day his pieces could be displayed in an art gallery. I'd be so proud if that day ever became reality.

The Boy Turns 14

J turned 14 a few days ago. It was just another day for him, as every birthday has been.

I stopped feeling guilty about his special day, several years ago. The guilt used to be centred around trying to give him a traditional birthday with lots of presents, which I knew he would not want or like, or appreciate the effort that had been put in. Of course guilt also came in the form of well meaning people who looked surprised when I said that his birthday was just another day to him, albeit with cake, and presents which he discarded to one side without a "thank you". 

J had seen the cake I brought home the day before, and I told him - "no cake today, cake tomorrow". 

I hoped he'd understand and not get upset that he wasn't having cake there and then.

I had to ensure the kitchen door was kept locked at all times though, as he has learnt the skill of removing food from a cupboard, with the stealth of an SAS operative. 

On the morning of his birthday, he woke me with the usual morning question - "do your cereal, yes" - which is his way of asking me to okay him to go and do his breakfast. 

When he came back upstairs, he hovered about me, and I asked him what he wanted. He replied - "J birthday cake, yes". I laughed and said yes, it's J's birthday and he can have some cake a little later.

When it came time for his presents, he knew what to do. Paper was torn off with gusto. I had bought him a scooter, with a wide foot plate, so he has more balance on it. I built it there and then for him, and he took it straight out into the garden and scooted around. 

Cards were opened with little interest, and he didn't take in their picture, or open them to read. He left them on the side. No offence is taken by this - it's just the way J is.

J just wanted cake. Cake with candles on. He kept on looking at it in the box, and looking at me as if to say, "come on mum, let me have some cake!"
His face lit up when he  finally saw me getting it all ready. 

He understands the rules of waiting until the rendition of 'Happy Birthday' has been sung, before blowing the candles out. And then he knows the candles have to be re lit again so that his younger brothers have the chance to blow them out. It's the same routine for every birthday cake we have! 

We went on a boat trip that afternoon. The small boat we have been on before, which is specifically for children and adults with disabilities. We were taken up very close to several cruise liners that were in port, including the biggest cruise liner at present, The Harmony of the Seas. 

J and his brothers were allowed to steer the boat at one point. J started to take his responsibility as captain very seriously and attempted to use the radio communication! 

His birthday may not have been typical of a 14 year old's one,  but he enjoyed himself and didn't become stressed. That's a win win in my eyes.

Waiting by the harbour, watching all the boats, with his youngest brother.

Having a go at steering the boat.

Six Years And Still Blogging

I missed my Blog's 6th birthday. Life has a way of making me even more busy these days, and I didn't find the time to get on and put this up.
Six years of yapping about my son with autism. I receive so many emails from around the world, so thank you for still asking your questions, or sending kind messages.

Respecting My Teenage Son With Autism

We have been back to see the psychologist recently. We visit every six months or so, for a review and check up.
J was measured, and is now 6ft. He is 'off the scale' for his height according to our Dr, but I don't think 6ft tall at 13 and a half is excessively tall, considering I am 5ft 9 and his father is 5ft 11.
We discussed J's recent unsettled behaviour at home, and my reasoning as to what it could be caused by. Puberty is obviously a major factor, and one I feel is making him feel quite uncomfortable - I can't have a chat with him about why his body is changing so dramatically and that what he feels is perfectly normal. Social stories have helped a little, but there is always that barrier for J understanding that it relates to him.

Whilst we were in the office, they were undergoing a major move, and therefore there were no toys or games for him to play with (it was completely bare with just chairs and a table) - something he always does when we're there, as he can keep himself occupied whilst I talk. I did pass comment to the Dr as we walked in to his office, that "this is going to be fun then" (irony intended).
J was anxious. He paced. He fiddled with the cord on the blind. He repeated a song (spoken not sung) over and over again. He looked as if he had ants in his pants and they were crawling over him.
It must have been 'meant to be' that we were there during this big move, and that their offices were topsy turvy, as it meant J showed his true behaviour, the one he is displaying at home a lot more.

J, at home, likes to have control over the television. We have one TV downstairs, and it's connected to Sky, with the capability of recording programmes. He can use the controller perfectly well, and will choose what programme he wants to watch, either from the main channels, or via the recorded section.
He doesn't want to just sit still and watch the telly all of the time, and will wander about, maybe go into the other room, but all the while his programme is playing. He likes to do that. If someone changes the channel, or turns the telly off, he becomes anxious. He is still listening to the programme, even if he's not in the room. I have found a lot of the times he goes out of the room is because he doesn't like the next part of the show, and avoids it. He doesn't want it fast forwarded or switched off - he is controlling his comfort level by what he does, and I don't have a problem with that. His anxious levels increase I have noted, when he is not in control of the telly, or when there are other people there. He is solitary, and again if I can accommodate that for him, I will. The other two boys have their iPads and are happy to watch Netflix or make use of the TV app that enables them to watch many Freeview channels live as they are broadcast. For my youngest, W, who has the vision impairment, he actually prefers the iPad as he can see much better, close up.

As a parent, I am learning every day. I will never be perfect at my job, but I do try and keep up.
Recently I have begun to get annoyed at the use of 'baby talk' directed at J, or on behalf of him.
I am very matter of fact about his autism - he has it, it makes him what he is, and I treat him no differently than I would anyone else. I respect him. Love him. I expect him to have manners (I always make him say "sorry" if he's bumped into someone, or "pardon" if he burps). I talk to him as I do my other children, and more so, I treat him like any other 13 year old. Yes, he may not be socially adapted like a regular 13 year old (wanting to have more freedom to go out with friends) or have the learning of one, but he is still a teenager, and I believe he should be spoken to with respect and not patronised (the baby speak).
When I talk about him to others, I am proud of him. I don't make sad faces and want people to feel sorry for me, or him. I don't use his disability to garner sympathy, or to get people to pay me compliments on how wonderful I am ( I've seen others who do this).
If someone starts to slow their speech to pigeon English, and 'goo goo gah gah'  him, it makes me cross!
The kind of sentence such as - " Look! A. Plane! In. The. Skyyyyyyy" Or "It's. A. Choo. Choo."
He is not a toddler! He may have learning difficulties, but I want him to be spoken to with respect, as he is growing up fast, and looks a lot older than 13, due to his height.
I always keep in mind that he may understand perfectly well inside his head, but it gets lost in translation, and he doesn't want to communicate, or just cannot do so, so to talk to him so condescendingly or without respect is plain rude, and hurts him.

He is changing. He is growing up. It's what we all do, if we're lucky enough. I fully expect there to be challenging behaviours, upset, wondering if my parenting is any good. It's life. I chose to have children. And despite it being so very flipping hard at times, I really do enjoy being a mum. Being a mum to children with special needs is an added bonus - I get to see so much more about people and life, and appreciate the small achievements, borne from hard work and determination.

My List Of Basic Rules For Being A Parent Of A Child With Special Needs

There are some basic rules I have made along the way, and as time has progressed, the list I created grew in size. Here I have written them down to share.

1) As a parent to two children with special needs, I have enough stress in my life. If you want to bring more stress to it with your attitude or drama, take it elsewhere. I don't have the time or energy for it.

2) I have a very tough exterior, and look strong and fierce, but inside I hurt much more than you could ever imagine. Be kind, and remember words do hurt.

3) I may be short tempered or give you short shrift at times, but it's not a reflection on you. It means I have more than my average stresses and demands going on, and I have to prioritise these.

4) I do have some strong opinions, but as I've grown older, I've learned not to believe that they are there to be imposed on to others at any cost, so don't impose all of yours on to me, especially if I appear to be like number 3 above.

5) If you're going to make up stories or bring along some BS, remember I can usually smell a lie a mile off. Years of dealing with professionals who are trained to talk about the cut backs in services appear as though it won't affect anyone, I have seen and heard it all. A lie dressed in fancy wrapping is still a lie.

6) I am allowed to moan about waiting times for appointments, as I have to attend more than many other people, and I have to be there with my special needs child, in a poorly equipped waiting room, trying to keep them calm, as the clock ticks past the next hour of waiting.

7) When your child is looking at my child, don't be embarrassed. Use the opportunity to answer your child's questions, or explain in basic detail about my child's disability. It builds a strong foundation for your child, for when they meet another child with a disability, and takes away the 'scared' and 'different' factor. If your child wants to ask me or my child a question, allow them. I will always be polite and friendly to those with questions - educating about disabilities is very important.

8) If you choose to make a rude comment direct to my face, my child, towards my direction, or gossiping, be prepared for me to educate you in manners. I will never swear or shout, but you will know I am not going to allow your ignorance to perpetuate any further.

9) When I smile (which I try to do all the time), know that it may be hiding the pain inside, be it mental, emotional, or even physical. I have had many comments made about how I always seem upbeat and happy - I do try to look on the bright side, but I also don't want to look miserable (it ages me!)

10) I will grab my child free time with both hands. Be careful if you offer me a few hours respite (or even a few nights - please!) as I  may just rip your arm off in the process of saying "yes please, whoopee"!

11) If I don't reply to your text/email/voice mail immediately, even if you've seen me 'online'  please don't take offence. I have a lot of things to do, and just as I've finished the end of a list, three more lists appear. I do forget, but it's not because I am not bothered or couldn't care.

12) If you're going to use passive aggressive tactics on me, I really don't have the inclination to interact with you. Be upfront and straightforward. It saves time.

13) I do try to please everybody, it is my nature, but again, as I have grown older ( thanks wrinkles for showing me that in my reflection) I have to remind myself that my all round health is more important than making sure everyone is happy (children aside obviously as they will always come first).

14) A simple gesture of a kind message, or an offer of a cup of tea means a lot. If you'd like to upgrade that kind gesture to me, let's say a bigger house for free, then I of course will accept. It would be rude to refuse!

15) If you ever feel awkward about sharing your (non disabled) child's achievements with me, don't. I love to hear about your child's news. We are all parents after all, and should always be proud of our children.

Yoga In The Park And The First I Love Mummy

We are coming to the end of the summer holidays here. Only four days left. Again, the time has flown, and the anticipation and worry at the beginning, for which I experience every year, was unfounded.
Yes, the weather has not been as hot and sunny as it was last summer, but we've still managed to get out and about, albeit nowhere too busy or populated.

J loves to be outside, whether it be in the garden, the beach, the woods, or the park.
Today's walk was in our local 'flower' park (so named by us as it has lots of flowers!). The dogs were off meeting their friends and having a play, and I was chatting to the other owners, whilst my youngest son, W, was stroking an 11 week old puppy who was absolutely gorgeous.
I always span the area my children are playing with, even if I'm deep in conversation, and upon one of my glances around, I spot J in the middle of one of the grassy areas, doing movements I think are related to the yoga he has been learning at school.

I captured several movements he made. He would hold the pose for a few seconds, then change. He adores being in nature, and now it appears yoga is a part of this too. 

    

Changing direction, we had a rather odd encounter with a stranger the other day. I had parked the car in a car park, and J was sitting in the back eating some lunch. I looked round at him, to talk, and noticed a woman in her 40's, parked right next to us, staring at J from her driving seat. She had a teenage son sitting next to her, and a younger child in the back. I suddenly realised she was mocking J and his eating. She thought she was hilarious. I noticed her children (I presume they were hers as they had a look of sheer boredom on their faces) were not participating in her charade, and were not really bothered by her impressions as they were not laughing or looking at J. She then spies myself, and knows I have seen her, and then proceeds to mock him some more, make faces akin to what children do in the playground when someone makes a mistake (that kind of gurn expression) and pull fake smiles at me and waving. 

A very odd and strange woman!

But back to a positive......

J said he "love mummy" the other day. Totally out of the blue. The first time he's ever said it without being echolalic or prompted. He made it in reference to being told I would be back soon. My other sons always say they love me, and vice versa, when I am going out without them, or dropping them off somewhere, and I believe J has learnt this from them. A very simplistic thing, but one that has such gravitas for me. It's only taken 13 years and 3 months for me to hear him say it off his own back, and oh my goodness it means so much to me. 

Summer Holidays

We are half way through the school summer holidays, and J has been struggling with the complete stop of school.
I made a large calender with a big square for each day of the holidays, and highlighted the day school re-starts for him. I cross off each day as it ends, so he can see we are getting closer to the day he can return.

As he has two younger brothers, the youngest who has a vision impairment, going out and about is more of a challenge, and I tend to stick to less commercial places, and the big outdoors.
We love visiting the local lake and nature reserve, and can make a day out there, with walking, a picnic, paddling, playing ball games, and sitting on the shore watching the ripples on the water.

A visit to the local lake and nature reserve.

He has also been his usual artistic self. Creating art from the supplies in the cupboard.
The giant chalks are always a hit with all three boys, and the garden patio area is a fantastic canvas for them to create their masterpieces.

J creating a chalk drawing on the patio. One of our labradors sitting in the foreground.

J's chalk drawing. When asked what it was, he replied "Space",

J and water are still a big obsession with him. He loves the garden tap, and turns the hose on to spray around. Unfortunately, yesterday we had a mishap. I went to turn the kitchen tap on, and the water pressure was low. I asked my middle son to go outside and check the tap was off properly. He came back in and said there was water spraying everywhere.

I went to investigate myself, and came across a burst pipe that was spraying every way possible. 

There was a make shift attempt to stem the flow, with kitchen roll and paper, which I knew would have been J. He had tried to stop it himself, the superstar.

Turning the tap off made no difference, and turning it on reduced the spray from the pipe, but not much. 

The garden pipe, with its paper towel wrapping by J.

I have water pipe cover and so arranged a call out within the hour. I did have to be persuasive to the call handler, as I wasn't able to turn the stop cock off (located at the bottom of my drive, under a cover, that would not lift up), and thankfully it was all fixed before tea time. 

It's all fun when you have children!

Alex Lowery ; I Have Autism. Here Are The 5 Things I Want Parents To Know

I've come across an informative article written by a young man who has autism.
Alex Lowery is a 21 year old man, who is challenging the way we look at autism.

The following is taken from a post he has made for a website called ' The Mighty'.

You can find The Mighty website here

I Have Autism. Here Are the 5 Things I Want Parents to Know.

By Alex Lowery

I was diagnosed with classic autism when I was 4. I found the word a terrifying place. In some ways, it’s still a frightening place for me. But I have reached a point where I am a professional public speaker on autism.

Parents often ask me to give them advice for their children who are on the autism spectrum. There are many things parents don’t understand about their children with autism. Here are things I wish parents of children with autism would understand.

Alex Lowery

1. Autism doesn’t mean their child is lost.

This would probably apply more to parents who have younger children with severe classical autism. I’ve heard some parents say they feel like autism has taken away their child’s mind and soul and left their body behind. I’d like to help all the parents understand that their child’s mind is still in there.

When I was about 4, I mainly spoke in my own language, but I had a level of understanding to a degree. I found the world to be a terrifying place with heightened senses and frightening people. I go into more details about this in my book about my life, “Thinking Club: A Filmstrip of My Life as a Person With Autism.”

2. Don’t assume because a child can’t talk, he or she also can’t think.

This is closely related to my previous point. Some children with autism can’t talk, and there are some who will never learn to talk. However, just because they can’t talk doesn’t mean they have nothing to say. It’s important to find any way you can to communicate with them whether it’s using sign language or getting them to type out their feelings. There are also non-verbal people with autism who show extreme intelligence when they type out their words onto a keyboard.

3. You can’t predict the future.

When some parents find out their child has autism, they feel like all their hopes and dreams are shattered. They say things like, “He’ll never be independent,” “He’ll never go to college,” “He’ll never get a job” and “He’ll never get married.” They say their child is never going to have a future.

I’d like to say to parents of young children with autism that the future isn’t set in stone. If you fight for your child and give them the right support they need, you may be surprised at what they can achieve in life.

At 21, I still haven’t achieved all of my ambitions in life yet, and I still need a lot of support. But I have achieved more than I thought I would. I now have a job in public speaking to raise awareness of autism spectrum conditions. I have a lot of support from my family, but my parents never thought I’d be able to do all the things that I’m doing now when I was a 4-year-old. I just want to tell parents not to give up hope on their children’s future.

4. People with autism shouldn’t always be held back.

This doesn’t just apply to people with autism, but to people with special needs in general. I’ve known parents of children on the spectrum who do everything for them and don’t teach them to do things for themselves. They may not teach them the skills they need to succeed in life. I’ve seen teenagers or adults with autism who don’t dress themselves but clearly could if they were taught to.

Now don’t get me wrong: There are people who are profoundly autistic who may also have a profound intellectual disability, which will require them to have 24-hour care for the rest of their lives. It may be hard for people at this level to learn basic skills, but I think any child with autism should be taught the most they can be taught no matter what level they’re at.

I don’t think learning should end there, either. I think people with autism should be taught skills that will help them cope in the real world. I’m still learning to cope in the real world. I’ve been learning to get public transport by myself to places I’m familiar with. I believe that with the right level of support, the majority of people with autism can lead successful lives.

5. People with autism don’t reach a set age and stop making progress.

A lot of people think that those with autism will have reached their potential by the time they’re 16 or so. This is incorrect. Many people with autism continue to make progress way into adulthood. People on the spectrum could even get to 30 and continue making progress. Many people with autism keep on learning throughout all their lives. This is an important message for parents who feel it’s too late to help their children.

You can access the original article here

Changing Routine And A Boat Trip

Sometimes I forget that J is a very easy going young man. I do tell people how wonderful he is at accepting quite big changes at times ; moving house being a major upheaval, and moving schools too.

J will now relay off in rote fashion all about the next day's lessons at his school. He says it as a continuous sentence, and will re-start if he is interrupted.

Last Wednesday, after he had returned from school, he began reeling off Thursday's activities. He gathered his swim trunks, a towel, and a bag, for which he does every Wednesday evening, as he knows it's swimming the following day.
On the Tuesday I had been informed that all of his class would be having a trip out on a local boat, that caters solely for children and adults with a disability, (and their carers, family, siblings etc). It is a charity funded boat, and so there is never a cost to the people using it. Also written in the book was the fact he would not be going swimming.

The boat 

So, when he told me all of Thursday's itinerary, and I saw the swimming kit all ready, I wasn't sure how to broach it with him. It's not as simple as telling him, "no swimming J".
I contemplated letting him take his kit in, writing in his 'home - school' book that I allowed him to, to save on his distress at there being no swimming.
But, I wanted to try something different. I didn't know how he would react, or whether indeed if he would understand.

When he had finished reciting all of Thursday's events, I added at the end, "no swimming J, J is going on a boat!"
He repeated his sentence again, with the swimming included still.
So I added at the end, "no swimming! J is going on a boat with V (one of his teachers)."
He then repeated, "boat tomorrow. V." And then he said all of the children's in his class' name too.
His next roll call of Thursday then omitted the swimming, and added in the boat. I was thrilled!

He repeated all of this again, many times through the evening, and also the next morning.
He repeats each days activities and events anyway a fair bit, so it wasn't unusual, or a sign to me that he was distressed by the change.

I knew he would love the boat, as he took a trip on it last year with his class, and then through that, I managed to contact the boat people directly and arranged a trip for him, his brothers (one who has vision impairment and nystagmus), my mother (their Nanna), and myself.
We had a spectacular day out on it, and the captain took us around the visiting Queen Victoria ship that was in dock. We were right at the base of the Queen Victoria, and it was incredible to look up at it. The captain then took us up and down the water, at a leisurely pace, and being such a glorious day, we had the sun shimmering upon the sea, and a beautiful cool breeze in our hair.

J viewing the Queen Victoria in dock

Sure enough, the message back to me via the communication book said he had loved the trip, and had even had a turn at steering the boat.

I have already booked for another trip for his birthday in a few days time, and this was booked before I was informed about the class trip.
The lucky boy will be on the boat twice in as many weeks!