I know it's nearly the end of January, and late for any more Christmas stories, but as I was absent from here over that period, I'm going to add it in now.
Christmas concerts at school for J have always brought unintentional laughter, not scripted or rehearsed prior to his appearance, and sometimes embarrassment.
Going back to when he was 5 years old, he played one of the Three Wise Men, and he and the other two Wise Men had to walk around in a circle, around the baby Jesus. J made the decision to break free from the trio and head for the school hall doors. On his way out, he flicked the light switches, and plunged the hall into near darkness, much to the surprise of the parents, teachers, and other students ; it still makes me laugh now.
2014's Christmas concert at school brought a new funny story, that I also managed to record on video.
He and his small class group were dressed in winter clothes, hats and scarves, and there was a giant, blank snowman cardboard cut out that each child had an item of clothing or a vegetable to add to, to create the full snowman.
The teacher handed J the microphone to speak into, to which he should have said "here is a carrot", but instead he proclaimed very loudly, "get off the dog".
No one really batted an eyelid at this, as after all it is a special school, and J doesn't have much speech, but I was chuckling away, as it's something I tell him every day, as he is always over zealous with one of our Labradors, and being laid back dogs, they don't move, growl, or make any kind of complaint to him.
There was another microphone incident that was near to Christmas, and was at his youngest brother's Christening. I have blogged about it before, at the time it occurred, but it deserves a mention again.
After the service, J went into the pulpit, where the microphone was stored, and made a lot of noise into it, a kind of huffing, puffing, blowing, noise. It reverberated around the Church, and stopped us all in our conversations and photo taking!
There was the 2010 school concert that saw him spitting at people in the front row. Spitting was his latest fad at that time, and he would do it when stressed. I had to sit several rows back (as I wasn't first into the hall to sit down at the front), and watch as he spat away. It wasn't great big gooey spits, more the small saliva ones that didn't travel far. I tried to intervene with looks of disapproval at his behaviour, wagging my finger to tell him "no", and wanted to get up and remove him from there, but it was awkward and I couldn't just barge into the class's well rehearsed show, so I was trying to urge one of the staff to stop him, which eventually one of them did. It was not a good experience and one that caused me a fair bit of embarrassment, despite all the parents who I apologised to afterwards, saying it was fine, and that they understood.
There have, of course, been many other concerts I have attended that have not had such a story to tell, but there is still the over whelming part of them that shows the sheer hard work that the staff and the children put into creating them. It's very humbling to be in the audience and watch so many special children try their hardest to either dance, sing, shake a maracas, or to just be stood in front of a sea of faces watching them.
Many parents, carers, and family members will not leave the concert without shedding a tear or getting a lump in their throat. As well as being a fun celebration, it is when we see the whole school come together, united. Our special children are amazing, and these shows just go to prove that.
I know there will be more stories of J and his ability to bring his own uniqueness to concerts and shows, and I positively look forward to them, wondering how he can top his "get off the dog" comment, or deciding the show should finish, and switch all the lights off. He's one of a kind. My Boy!
Sunday 25 January 2015
Wednesday 21 January 2015
Dealing With The Personal Care Of My Maturing Son
J is in the full throes of puberty now. He'll be thirteen in four months time. He is 5ft 9in tall and his feet are an adult size UK 11 (US 12).
We have had the body odour underarms for several years, and the occasional spot on his face, but the last few months has seen his body hair grow and thicken rapidly, things growing and having a mind of their own, and his face become very spotty with clogged pores.
As he does not wash or bathe himself without help, although he loves to wallow in a bath when he gets the chance, I am still his carer in ensuring he is clean and tidy.
This may be a sensitive subject for many, but it is an issue that I am sure I am not alone in. The issue being his maturing body, but with the childlike brain and behaviours.
Washing my young adult son's body and private area, I admit I have found difficult to deal with.
Difficult in respect of having to still care for him in this area and accepting that he will always need to have this assistance.
I am fully accepting of his disabilities. I crossed the bridge from denial and sadness, to acceptance a while ago. It is just seeing my maturing son still requiring my complete help in washing him.
There is a tinge of sadness at this, and that he has no desire to groom himself or request a trendy hair style.
But as I said, it is a minor blip. I am dealing with my emotion. I will get past it. I know I am not alone. It is something that is rarely talked about as it is deemed too personal or even taboo.
When we become mothers, we automatically take on the role of carer for our baby/ies. It is a natural instinct to clean and bathe them as they are, of course, not able to do so themselves. Even as growing children we still oversee their cleanliness. But when they are on the cusp of teenhood, even well before for a lot of children who do not have a learning difficulty, children develop modesty, and want to take control of their clean routines. We as parents let them do this, as it's part of growing up.
So, having a young adult, who has matured in their private area, and who has zero modesty, who has been known to strip bare naked at the front door when returning from school (as he likes to change out of his school clothes) and show the neighbours and bus escort his all, (in literally seconds he can do it) it adds more pain to having to deal with him growing up.
I spoke to someone in the care profession a few weeks ago, and mentioned my struggle. I said it must be similar to someone suddenly having to care for their elderly parent, and seeing them become dependant on their child to do the most basic, but most intimate of care - washing them. I said I know people get over their feelings of sorrow or being uncomfortable, and it becomes second nature, so I expect I too will do the same, and my worries will become a distant memory, but what this woman shared with me was so honest.
She told me that her own mother had become reliant on this type of help, and it had been left to her, the only child, to do this for her. But, she couldn't overcome her upset and struggled with the huge emotional aspect of becoming her mother's carer. She was fortunate enough to have another professional carer come into the home and perform the personal care of her mother, whilst she herself managed everything else.
Being able to talk to someone else, and to have them share with me their own struggle and dilemma helped me enormously. She told me I could enquire about getting some care to come in to the house and wash him, but it was at that moment I knew I would be able to deal with my own feelings, and that I would overcome it, and I wouldn't need outside help coming in.
I am incredibly concious of the severe financial difficulties imposed on the care system in this country, and that the Government have cut and cut again the money given to these vital and much needed services.
I never like to take something that I am not 100% certain I need or want, and the rigmarole of even trying to get access into this care service would probably put me off in the first instance, but to then be offered help that I know would benefit someone else in a worse situation than myself, well it's not me. I am not like that.
I want that help to be given to someone desperate for it, or who cannot cope. I am not that person. It would be unfair of me to contemplate it.
Plus, I know I am just going through a natural emotion. I don't want to relinquish any aspect of my son's care to someone else. He needs me. And whilst I am able to, I will provide this to him.
On an ending note, I don't want to be seen as a martyr here. The rise of the 'keyboard warrior' and their attack on anything they disagree with has made me want to back myself up. I am not writing this post to condemn those who have sourced outside help to care for their child or adult's personal care, it is me wanting to broach the subject and to show that it is fairly common to have a wobble about it. There is help out there if it is too hard for someone to overcome. I consider myself lucky that I am able to deal with it myself.
We have had the body odour underarms for several years, and the occasional spot on his face, but the last few months has seen his body hair grow and thicken rapidly, things growing and having a mind of their own, and his face become very spotty with clogged pores.
As he does not wash or bathe himself without help, although he loves to wallow in a bath when he gets the chance, I am still his carer in ensuring he is clean and tidy.
This may be a sensitive subject for many, but it is an issue that I am sure I am not alone in. The issue being his maturing body, but with the childlike brain and behaviours.
Washing my young adult son's body and private area, I admit I have found difficult to deal with.
Difficult in respect of having to still care for him in this area and accepting that he will always need to have this assistance.
I am fully accepting of his disabilities. I crossed the bridge from denial and sadness, to acceptance a while ago. It is just seeing my maturing son still requiring my complete help in washing him.
There is a tinge of sadness at this, and that he has no desire to groom himself or request a trendy hair style.
But as I said, it is a minor blip. I am dealing with my emotion. I will get past it. I know I am not alone. It is something that is rarely talked about as it is deemed too personal or even taboo.
When we become mothers, we automatically take on the role of carer for our baby/ies. It is a natural instinct to clean and bathe them as they are, of course, not able to do so themselves. Even as growing children we still oversee their cleanliness. But when they are on the cusp of teenhood, even well before for a lot of children who do not have a learning difficulty, children develop modesty, and want to take control of their clean routines. We as parents let them do this, as it's part of growing up.
So, having a young adult, who has matured in their private area, and who has zero modesty, who has been known to strip bare naked at the front door when returning from school (as he likes to change out of his school clothes) and show the neighbours and bus escort his all, (in literally seconds he can do it) it adds more pain to having to deal with him growing up.
I spoke to someone in the care profession a few weeks ago, and mentioned my struggle. I said it must be similar to someone suddenly having to care for their elderly parent, and seeing them become dependant on their child to do the most basic, but most intimate of care - washing them. I said I know people get over their feelings of sorrow or being uncomfortable, and it becomes second nature, so I expect I too will do the same, and my worries will become a distant memory, but what this woman shared with me was so honest.
She told me that her own mother had become reliant on this type of help, and it had been left to her, the only child, to do this for her. But, she couldn't overcome her upset and struggled with the huge emotional aspect of becoming her mother's carer. She was fortunate enough to have another professional carer come into the home and perform the personal care of her mother, whilst she herself managed everything else.
Being able to talk to someone else, and to have them share with me their own struggle and dilemma helped me enormously. She told me I could enquire about getting some care to come in to the house and wash him, but it was at that moment I knew I would be able to deal with my own feelings, and that I would overcome it, and I wouldn't need outside help coming in.
I am incredibly concious of the severe financial difficulties imposed on the care system in this country, and that the Government have cut and cut again the money given to these vital and much needed services.
I never like to take something that I am not 100% certain I need or want, and the rigmarole of even trying to get access into this care service would probably put me off in the first instance, but to then be offered help that I know would benefit someone else in a worse situation than myself, well it's not me. I am not like that.
I want that help to be given to someone desperate for it, or who cannot cope. I am not that person. It would be unfair of me to contemplate it.
Plus, I know I am just going through a natural emotion. I don't want to relinquish any aspect of my son's care to someone else. He needs me. And whilst I am able to, I will provide this to him.
On an ending note, I don't want to be seen as a martyr here. The rise of the 'keyboard warrior' and their attack on anything they disagree with has made me want to back myself up. I am not writing this post to condemn those who have sourced outside help to care for their child or adult's personal care, it is me wanting to broach the subject and to show that it is fairly common to have a wobble about it. There is help out there if it is too hard for someone to overcome. I consider myself lucky that I am able to deal with it myself.
Wednesday 7 January 2015
Greg Krueger - Amazing Cat House
I have come across a story about a man called Greg Krueger, from Saint James, Minnesota, USA, who has opened his home up to the world wide web, to show what he has created, and continues to add to.
Greg talks about being diagnosed with Aspergers at the age of 49.
He has created a feline cat fun house within his own house. He has knocked into walls, built cat sized staircases, has hidey holes for them, and it looks amazing. It has been a work in progress for him, for 15 years.
He says he thinks about what else he can do, almost all of the time, and when he received his Aspergers diagnosis, it all became clear for him, as to why he is so obsessed by this creativity.
I have watched the video clip on YouTube, and it really is fantastic what he has designed and made. The cats look like they thoroughly enjoy their house. As Greg himself says, there is a book called 'All cats have Aspergers Syndrome' (by Kathy Hoopmann), and he himself has always loved and identified with them, so he naturally has an affinity to them, and so has made his house an awesome cat place to live.
Below are some images from his house, and what he has, so far, built.
If you want to have a look at the video of him talking about his house, I have linked it HERE
Greg talks about being diagnosed with Aspergers at the age of 49.
He has created a feline cat fun house within his own house. He has knocked into walls, built cat sized staircases, has hidey holes for them, and it looks amazing. It has been a work in progress for him, for 15 years.
He says he thinks about what else he can do, almost all of the time, and when he received his Aspergers diagnosis, it all became clear for him, as to why he is so obsessed by this creativity.
I have watched the video clip on YouTube, and it really is fantastic what he has designed and made. The cats look like they thoroughly enjoy their house. As Greg himself says, there is a book called 'All cats have Aspergers Syndrome' (by Kathy Hoopmann), and he himself has always loved and identified with them, so he naturally has an affinity to them, and so has made his house an awesome cat place to live.
Below are some images from his house, and what he has, so far, built.
If you want to have a look at the video of him talking about his house, I have linked it HERE
Tuesday 6 January 2015
Finally Back and Ready to Blog!
Wow, it's been a long, long time since I last posted here.
I had no laptop or computer to use, and it is very hard to write a post using an iPad. I like the traditional keyboard to type on, and it's awkward on the iPad.
As you can imagine, life has been full on, with many stories I will be adding to here.
J is still a happy chap. He's 12 and a half, and now measures 5ft 9ins - my height! He's doing really well at school, and all traces of the bad start with his first teacher have been removed. He sings happily as he walks down to the school bus, and loves to get his lunch box ready for the next day.
Thank you for the emails over the last few months, they have been lovely. It's so good to hear from you, your stories, and what you've found interesting in this blog.
I still won't use advertising on here, so there is no annoying boxes urging you to click on them. This is just a place for me to write about my life with my son who has autism, and other non specific learning difficulties.
I hope you had a lovely Christmas and New Year. Ours was quiet, with plenty of happy family times. J received a bubble wall tower, and it sits in the living room for us all to share. It was meant for his bedroom, but I got excited about building it, and then went out to find some distilled water - you can use tap water, but it goes slimy and stale quite quickly, and distilled is recommended by the manufacturer. After filling it up with around 12 litres of water, having a run through with the remote control, checking the lights and bubbles, I remembered that I actually needed to have it upstairs in his bedroom. It was heavy even before I had built it and filled it with water, and it was not feasible at all for me to even attempt to carry it afterwards. Not one of my brightest moments!
This is the stock image of the bubble tower.
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I had no laptop or computer to use, and it is very hard to write a post using an iPad. I like the traditional keyboard to type on, and it's awkward on the iPad.
As you can imagine, life has been full on, with many stories I will be adding to here.
J is still a happy chap. He's 12 and a half, and now measures 5ft 9ins - my height! He's doing really well at school, and all traces of the bad start with his first teacher have been removed. He sings happily as he walks down to the school bus, and loves to get his lunch box ready for the next day.
Thank you for the emails over the last few months, they have been lovely. It's so good to hear from you, your stories, and what you've found interesting in this blog.
I still won't use advertising on here, so there is no annoying boxes urging you to click on them. This is just a place for me to write about my life with my son who has autism, and other non specific learning difficulties.
I hope you had a lovely Christmas and New Year. Ours was quiet, with plenty of happy family times. J received a bubble wall tower, and it sits in the living room for us all to share. It was meant for his bedroom, but I got excited about building it, and then went out to find some distilled water - you can use tap water, but it goes slimy and stale quite quickly, and distilled is recommended by the manufacturer. After filling it up with around 12 litres of water, having a run through with the remote control, checking the lights and bubbles, I remembered that I actually needed to have it upstairs in his bedroom. It was heavy even before I had built it and filled it with water, and it was not feasible at all for me to even attempt to carry it afterwards. Not one of my brightest moments!
Below are two images from our own bubble tower in action.
There are lots of colours it moves through, and there are fish that move up and down with the bubbles.
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