As Pudding moves on to another phase of his life it has meant a number of sad endings. In the last few weeks we have waved goodbye to portage, to the gym sessions that he goes to, and to his preschool playgroup. They have all been such positive inputs in his life and I will admit to a few tears on each final session.
But there are of course new challenges to embrace. There have been many times when I have wondered whether we’re doing the right thing to choose mainstream schooling for Pudding. Will they cope with his chaotic presence? Will he make friends? Will he be more aggressive in a smaller space with more children? Transition sessions over the last three weeks have been reassuring though. He has had three mornings or afternoons spending time in the FS (Foundation Stage) unit, playing with all the resources and getting used to the environment.
Parents were invited to stay for part of each session as well as having some separate workshops. (I did not attend all of those, as finding out what phonics they will learn, or what behaviour and attendance levels are expected is just one more reminder of his differences.) I saw Pudding flitting between all the various resources, but returning again and again to his favourites (balls and building particularly). And I saw how comfortable he is already with his TA (a teaching assistant who will be supporting him full-time); the second time ever that he met her he ran for a cuddle straight away. His class teacher is the same one who has been teaching Twiglet over the last year, so Pudding already knows her and gets very excited when he sees her.
Yes, admittedly I did see some of the other children glancing at my sweet boy with distrustful looks; sometimes justified, like when he was running off with the football in the middle of a game. But I know they will get used to him soon enough; his smile and infectious enjoyment of life has won many hearts already.
The school has been so helpful and reassuring through this whole process: arranging Makaton training for some of the staff; sorting out a time that our specialist nurse can come and talk at a staff meeting; inviting me into the unit at a quiet time so we could walk around and talk about potential problem areas.
One downside of transition though is yet another report on his abilities sent up from playgroup. The Early Years Foundation Stage has 17 areas of learning that children are assessed on – things such as Understanding, Health and Self-care, and Managing Feelings, as well as the reading and writing. As Pudding is now 53 months old he should be well into the 40-60 month level in most, if not all, of the areas. Of course he isn’t there in any of them. In eight areas he is only at the 22-36 month level and speech of course is still in the 16-26 month stage. I knew that but it’s still hard to read every time.
I’ve always been one for facts and figures; I want to know things, see how he compares to his peers. Sometimes it has been suggested that it may be easier to avoid this heartbreaking information. But the great thing I can take away from this report is the difference since he started playgroup at age 3. He has improved in every area apart from two of them. Not as fast as his peers of course, but it is still progress.
Progress is good. Progress is something to cling to when your son has a diagnosis such as Hunter syndrome; when you dread the day that it may disappear and be replaced by the far colder word ‘regression’. Every time I see progress I am thankful.
After diagnosis, it is so easy to drown in the ‘what if’s. What if his diagnosis had been made earlier? What if I’d pushed more to have my worries about him recognised? What if he’d had treatment from birth? What if he was ‘normal’?
But ‘what if’s don’t really help, do they? For now, I’m trying more and more to take a leaf out of Pudding’s book. Let’s live in the moment, dance in the sunshine, splash in the pool, pull all the books off the shelf, play hide and seek with our feet, and celebrate each little step of progress!