When we first started to get help for my son’s difficulties I was really hopeful. He seemed to really struggle with his co-ordination and he seemed over-whelmed by sensory symptoms. Life seemed to be a struggle for him with day-to-day tasks insurmountable and concentration in short supply. I thought his functioning and coping might begin to improve once we saw the correct people. I hoped that the specialists involved would be able to teach him the skills that I couldn’t. Many of my son’s difficulties are caused by dyspraxia, autism and over-riding sensory issues that make everyday tasks that bit more difficult.
We saw a paediatrician, an occupational therapy team and my son attended a motor skills group for six weeks. I was sure things would get better and my son would become more comfortable with the basic life skills essential for day-to-day living (using cutlery, holding a pen, doing up zips, cutting paper etc). This didn’t happen.
Instead what happened was that our house started to fill up with adaptations and special needs equipment. We got ‘Caring cutlery’ with thick handles and indentations for the correct finger placement. We got a ‘sloping desk’ to provide a raised slanted angle for my son to write on. We got a squidgy, bumpy circle mat for my son to sit on to balance out his fidgeting. We got special pens, special pencils, a pair of scissors with looped, boingy handles. We added all of this to my son’s coloured paper and reading overlays he has for his visual over-sensitivity.
We were recommended ‘chewlery’ to help my son manage his oral seeking behaviour (translation – constant chewing on every piece of clothing, classroom equipment and piece of metal within his reach). These were awesome. We love these and they made an immediate impact on my son’s overall health and behaviour.
All of the adaptations helped. They reduced physical strain on my son, as well as helping him to manage his sensory symptoms. However, I couldn’t help feeling disappointed. One of my worries for my son is that he looks vulnerable. His differences single him out as, well, different. I had hoped that the specialists we saw would help to make these differences less noticeable. What they actually did was load him down with adaptations that make the difference even more noticeable.
I sometimes think of what it must be like when he has to move around the classroom. As other children stand up and move desks he has to put his sloping board under his arm, pick up his scissors, special pen and special pencils, grab his coloured books and overlay and somehow manage to carry all of this around the classroom, along with his bumpy cushion and his chelwery. And this is a child with problems in motor planning and co-ordination!
I have been assured that much of the equipment he is using will improve his motor skills in the long-term so that he needs fewer adaptations in the future. We have seen some improvement and I am grateful for that. I have also been looking around for less obvious adaptations and this is where I have really appreciated the advice of other children and parents. My two favourites are the sloping desk and the chewlery.
The first chewlery my son had was a very robust chew toy that is worn around the neck with a lanyard. This was a good introduction and my son loved it. However, with all the best will in the world, it looked like a dog toy. We began searching for something that would be robust enough but that would look more natural and unobtrusive. We chatted to other parents and joined a couple of groups on facebook. We came across a company that make chewlery that really does look like jewellery or that can pass as zip attachments. We had to do a bit of trial and error to find something that was both chewy and robust enough. In the end we have circles. These are marketed as necklaces with a hole in to attach the cord. We buy the circles in the same colour as my son’s schools fleece and then shorten the cord to attach it to the fleece zip. My son chews away happily on this and it just looks like he is chewing the zipper. There are also bangles and chubes that some parents attach to the cord on hooded tops.
A month after starting juniors my son was coming home exhausted and emotional. We found out he had stopped using his sloping board by accident in a multi-agency meeting that his teacher attended. The teacher said he had stopped using it and she thought it was because he didn’t want to appear different to the other children. I talked to my son about this and it was unclear whether he didn’t want to appear different by using the board or whether the act of asking for and getting the board made him feel awkward. I remembered something that a teenager told me about high school. They said that they use a lever arch file instead of a sloping board. Nobody notices this and it is an adaptation they have with them all the time. I asked my son if he would like a file in his favourite colour to use. He was enthusiastic about this. We also got some stickers of his favourite characters and he put these all over the file.
My son was really happy with his file and he brought it into school the next day. I checked with the teacher that this is alright and made sure we were putting it in the correct place. My son has been using the lever arch file ever since. At home he still uses his sloping desk and interestingly he voluntarily goes and gets it whenever he is going to write at the table. However, in school he is more comfortable with the folder and we are happy to accommodate this.
His chewlery has been an even greater success. He has chews on his coat and on his school fleeces. We no longer have soggy clothes at the end of the day and he no longer has a sore face from all the chewing. His friends have been asking about the chews and a few of his class mates have bought them too. This has made a lovely trend and something that my son has noticed and enjoys.
The adaptations do make my son’s life easier. They reduce physical stress. This in turn must reduce frustration and emotional exhaustion. Eighteen months on we are also seeing more permanent improvement in self-care and motor skills. This has made all of us more hopeful about the future. I also believe that the more subtle adaptations we have found are helping my son to feel less different and more included in his education and social life. He is able to get the help he needs but in a more subtle way that flies under the radar. This has a reduction in stress in a different way that is as important now. I would imagine that this will become even more pertinent moving into the teen years as my son takes on more responsibility for organising his own learning the notion of sameness/differentness becomes a major issue for him and his peers. These are the more discrete variations on adaptations that I have found. I am always happy to hear about more, particularly those based upon parent experience or personal use.
Until the end of September we are giving you the chance to stock up on some great school sensory products. Buy any 2 education and learning products here and use the code C4S
Please feel free to use the comments section to share any mini-treasures that we’ve discovered.
Caring cutlery and junior caring cutlery – available from Boots, amazon or completecareshop
Chewlery – available from amazon with discrete chews available at Chewigem
Thanks once again to Rose Tinted World for this guest blog, you can follow at Twitter
© Copyright Gemious Ltd 2019