Down Syndrome - Therapy

I've been debating how much to put on here about Down Syndrome. I know a few of my subscribers have children with Down Syndrome, other have children with other special needs, but many are just mums a little overwhelmed, or not even mums at all! 

But I'm passionate about teaching people about Down Syndrome, so that the culture of fear around it (due almost exclusively to the testing done in pregnancy and language in press articles) dissolves. Down Syndrome is honestly one of the best things that ever happened to my family. Daniel doesn't suffer. Our lives are richer for him having Down Syndrome and I believe he will be happier in life than many of my friends' kids thanks to Down Syndrome too, all the research shows almost all people with Down Syndrome have fantastic lives and incredible self esteem. So, because today is the 21st of the month and Down Syndrome is a tripling of chromosome 21, I've decided I'll at least do some posts on the 21st and see where we go from there!

Today is more background about Daniel's therapy situation for the last 5 months. 

Here in Northern Ireland, there has been a lot of controversy over placements to special needs schools, particularly nursery units this last year. Children have had sessions halved in length and others didn't get places at all. We have decided to go down the mainstream route for Daniel for many reasons, but this is less common here than elsewhere in Britain. As a result therapy isn't done in school automatically the way it is for children in the special school sector. This results in messy transfers between teams and unfortunately for us it resulted in us turning up for Daniel's therapy appointments in August and being discharged from Speech and Language Therapy and Occupational Therapy. Physiotherapy phoned us the next week and discharged us over the phone. Apparently this was necessary for the Kids Team to take him up (not actually true we found out in the last week...) The Kids Team come out to schools to help teachers with therapies that might be necessary for children in the mainstream classroom. So for most children these are speech impediments or fine motor skill issues only coming to light on starting school. For Daniel who has DS and therefore we know needs speech and language, occupational and physio intervention this is a far from perfect system, especially as after a year he then goes back to community appointments but has to go to the bottom of the waiting list again. It is really shocking therapy coverage for children we know need consistent regular interventions in the early years. 

Anyway, our fears came true and Daniel hasn't had a single therapy appointment since. A physiotherapist came out to school this last week to do an assessment but we know it will be the end of February before they have done all their assessments (of a child who was already in the system) and can commence teaching his teachers. 

So while I praise the NHS and love having Daniel, the extra work and stress that comes from chasing these things and trying to close the gap myself is incredible. We took the decision in August that I would do a certificate this year in Down Syndrome education that covers the school years and looks at teaching speech, reading, writing, as well as addressing behaviour and social issues too. This certificate cost a lot of money to sign up to, and would involve considerable work. Then the months flew by and I got an email in December saying I had two months to complete it. I had yet to log in to the online course materials. Cue a panic. 

Since then my mother has very kindly come down once a week to let me do a module while she looks after Rory and does the school pick-up. These few hours have been so precious to let me get through the course. I am now 7 modules in and have passed all the assignments to date (there may have been a slip up on one when I had a migraine but I passed the resit!). The problem is while I've been able to implement some of the training to date, I really need to spend a few days working out what resources I need to produce and update Daniel's therapy programme. 

I have done detailed therapy at home with Daniel from a young age. It's not something every family with DS does, but for me, especially as he is our eldest, I had the time and wanted to make sure I gave him opportunity to do well (without pushing him though!). Since Rory came along there has been a treading water approach and I am glad I have this new training behind me now to kick the therapies up a gear. 

So, I thought I'd show you a video of his maths skills (if you've got this far, impressive!) - most children can rote count way beyond their actual understanding of cardinality (number of items in a set). Daniel can actually only count reliably to three. He can do 1-2-3 and then tends to say 7-5 instead of 4-5. But he actually is getting his cardinality level to the number three too, which is very impressive. We test this and teach this by working on his one to one correspondence (so he moves from block to block when counting), having a stable order and then ensuring he can understand how many and critically be asked to give one or two from a set of three and he can understand and stop (if children haven't got cardinality up to this number, they will likely just give all of them back when this question is asked). His attention span isn't great, but he is developing good maths skills for a 4 year old, so we are confident for the future! The big thing that came out of this course so far for maths skills is how important it is to make sure Daniel has up to a number fully sorted before we expand his set to another number. You might think this is weird, but even if they have 1-2, cardinality of 3 can take a while, then up to 4 a while beyond that. It can take typically developing children a few years to move from rote counting to crack the code and for Daniel it's even more important we move slowly.

So that's where we are at present with therapies, and I'm thinking a monthly update on reading or speech therapy and one on maths or other skills might be interesting so people learn the issues people with DS have and maybe get some tips on therapies to try themselves. 

Let me know if you have any questions!