Lucia talks about her experience of supporting her 12 year old son
My son is our first child. As a baby he was generally happy and content. He didn’t crawl, and walked when he was 15 months old. We did not think this was unusual or concerning. He went to nursery from 9months of age, where he enjoyed the company of other children, but he did not like loud noises, messy play or being dirty. He cried everyday when I left him at nursery (where he remained until the age of 4!), even though we were told he didn’t take long to settle and was very happy during the day. Potty training took a while, but we were always told this was not unusual “being a boy”. He started talking very early and we thought this was great (“isn’t he clever…”); he did stammer for a bit; we thought it was more pressure of speech than a stammer and didn’t seek help. Our daughter was born when he was two, and soon we started to notice differences in their development. A bit of this was put down to “girls are so different”, so we did not think much about this. He remembers his time in nursery as very happy.
He moved nurseries to one that was attached to the school which we had chosen for him, where days were more structured. This was an independent school with very small classes and a friendly atmosphere, which we liked very much. He was really keen to start, though a bit apprehensive, as he really liked routine and didn’t like change. The nursery teacher was a very experienced and soon to retire, stern and somewhat impatient lady. She soon pointed out to us that he was struggling holding the pencil and he “needed to decide” if he was right handed or left handed, as he often used both hands for written work. As he hadn’t decided by December, he was made to use his right hand to write, but he told us he did not like this, so during Christmas he started using his left hand which he seemed to prefer and was making more progress after that. He was by far one of the most articulate children with very rich vocabulary, and his verbal ability contrasted with less ability at writing or drawing. Again, a lot of this was put down to “boys do this”. He wasn’t boisterous or excessively active, preferring sitting in a corner playing with dinosaurs or looking at books instead. He started reading early and had a very advance reading age very soon.
He enjoyed being around other children although sometimes it felt that he was more an spectator rather than a participant in play. As he got older he started going to football after school but he did not seem to understand the whole purpose of the game. He attended swimming lessons, where he was progressing, but he would often seemed distracted or not paying attention. Loud noises (drills , hoovers, aeroplane engines…) continued to be distressing, even as he got older. Some foods were difficult to eat (anything with a sauce or a soft texture would make him gag).
Soon after starting yr1, his teacher ( a lovely and very experienced lady) pointed out he struggled with following simple sequence tasks at the beginning and during lessons: put your homework on the tray- then sit down, getting changed for PE, doing buttons, eating with cutlery, sitting upright during “carpet time”…he was liked by everyone and he was seemed as a very bright child, but somehow his body would not do what it needed to. He sometimes would seem “in his own little world” but this was not affecting his attainment at school, where he was doing very well. Cutting with scissors soon became his nemesis. I spent a lot of time (and money!) looking at different pencils that would improve grip and scissors for left handed people. His teacher said that perhaps it was worth speaking to a paediatrician about his coordination. She also referred him to the SEN teacher at school, who had a son with dyspraxia and this was the first time this was ever brought up. Our son really liked spending time with the SEN teacher who also helped him understand what dyspraxia was.
Our GP recommended referring him to a paediatrician. We struggled with this as we did not want him “labelled” but we realised that he would perhaps have access to help if he was “labelled”.
Our first experience with a paediatrician was nothing short of awful. We were initially referred by our GP to a neurodevelopmental clinic, where a rather impatient paediatrician said “what are your expectations of him? Do you want him to go to university? Because he won’t. He will never be able to swim well. He will never be good at sports. He will have a tendency towards depression because friendships will be difficult to hold. He will not be good at writing so his school grades will suffer. With a lot of practice at everything he will only be, at best, average. You need to modify your expectations”. This was after hardly laying eyes on my son and certainly (now I know ) without a proper assessment. I found this upsetting, because I did not recognise her description as one corresponding to my son. My expectation was not fixed on him going to university, but for him to achieve his potential and to be happy. This was a 7 year old we were talking about. I did not care about him being good at sport (hardly aiming for the Olympic team in our house!) but I wanted him not to miss out on life. I believed in him: he was after all, a very eloquent, caring, sensitive child who everyone liked and we loved. I didn’t believe it was fair to “write him off” at the age of 7.
Our GP was brilliant. She referred us again to someone else, whom we later learned had an interest in DCD. She was truly fantastic. He was assessed and he fell in the 3rd centile for his age. This was difficult to take in, but came as a bit of a relief: maybe there is something we can do about this.
It was now the end of year2, where he began to notice that his drawing, art and physical skills were not as good as those of other children. He couldn’t run fast, he couldn’t cut with scissors well…he was amazing at reading, writing (content, handwriting less good!) and maths but to him this was unimportant because he began to feel different. We spent that summer doing lots of activities that he would enjoy and reminding him how good his effort was. We spoke to the school and SEN teacher about rewarding effort in the areas he found difficult. His PE teacher stopped telling him off for being the last to change and instead starting commending that he had got changed quicker than last time. He started drumming (which he continues). Small gains.
We found a great physiotherapist (private) who created exercises and circuits for him, and who would also do swimming in infinity pools to strengthen his core muscles. This was very expensive but we thought worth it. The paediatrician continued to follow him up and we began to understand DCD as part of a complex spectrum of conditions and neurodiversity. Our son loved these sessions.
At the end of yr 4 we moved cities due to work. He underwent assessment to attend a very selective school, which he passed with flying colours, and he is now in year 8. He copes with the demands of the school relatively well, he creates a “different system” for every task he is faced with, which helps him. For us, it is a challenge trying to explain to the many teachers he has that this bright child really has to work hard to follow the very strict school routine. He recently got into trouble for not using a locker and carrying all his books with him instead, but as he says “that would mean another step in my system and more to remember. My days are already full of systems and this one is not worth it”. He found a rucksack with wheels which he asked me to buy for him which he is not allowed to use at school because it may be a trip hazard for other children (really?). He has been reprimanded for being late at a class because he was late changing from PE. He has been given a black mark at school for poor cutting with scissors in art (his nemesis again, this time in senior school!). My response was : “cutting with scissors is not a life limiting skills; there are other types of art different to collages and this is a skill he will not master, nor I believe he needs to”. I have told him this may be his only “get out of jail free card” at school!
I admire his determination and good spirits, and his lateral thinking will be a great asset in the future. He will never give up, he says. He goes to rugby where he will be pushed and roll on the mud, laughed at by others for his lack of skills, and then, fighting tears, he’ll say “I’ll come back tomorrow”. His swimming is good, above average according to the school report, that makes him happy, but took tremendous determination “I will learn butterfly”. He has decided that he will be in the hockey team and be the goalie, and he works hard at this. At school he has declined additional time at exams and he does not want to be treated differently: “they will feel sorry for me, I don’t want that” and instead he works incredibly hard to keep up. We say to him “you are an android in a world of iPhones. Some apps don’t work for you, but some others are better”. There is a SEN coordinator at school who knows about him, but we don’t feel as supported as we were before. We have not found a physiotherapist like we had before, this would be so helpful.
There are some dark times too. There is no support, nowhere to go and little awareness. There is a sense of “he will grow out of it”. There are times when he goes backwards dramatically: some days is like he has never met a fork before! His follow up currently by paediatrics is now “let us know if you need us”, but I am not sure what they would do either. We are very much left to get on with it. He is beginning to feel differences in how he interacts with others and conscious about showing “clumsiness”. Some days the world is difficult to manoeuvre around and he gets so upset and frustrated. I agree with him and I don’t want him to be treated differently either, but I would like the recognition that he is different. We remind him of his positive traits (many!) and I do think he is a good ambassador for the condition, but this is not a badge he wears with pride (nobody wants to be different at that age).