Down Syndrome

Including Children With Down Syndrome In Mainstream Schools

Today on Twitter @Jigsawcare & @earlyyearscpd made me aware of an article in the Telegraph. As it is Down Syndrome Awareness month this month I thought I'd share my two pence worth about my experiences with mainstream schools.

Kyd is now 10, as most of you know he has Down Syndrome, he has been to 3 different mainstream primary schools, moving from each for very different reasons causing it's own problems. Finding a mainstream school suitable for your child's need is a difficult job to get right.

I had Kyd at 16 and when he started school I was only just 21. I didn't really research any schools as I didn't have to. Kyd was going to the school all my cousins went to. We had a steady flow of people at that school from 1991 onwards. In 2006 we still had 3 members of the family in the school, so he knew them, meaning he had back up in the 'getting to know people' aspect.

This proved to be a huge mistake!

It seemed just because we knew the school and that the school knew us, didn't mean that it was the best place for him. They knew from the age of 2 that I wanted him to go there proving plenty of time to prepare and understand more about teaching a child with DS. NO! They were non the wiser even after accepting him into the school they still didn't seem to prepare. Well put it this way... by the time we left in Year 2 Kyd had fallen behind and was now doing less than he did in nursery. He had a FULL statement of educational needs giving the school funding for a 1 on 1 teaching assistant and materials needed for his education. It seemed like other than the TA nothing was really put in place. I printed out bits myself for the staff to read through and use but god knows what happened to them. I was told over and over by a mum at the school not to send Kyd there, as her children had SEN and they were failing them so she was waiting on a place at a Special Needs School. This all of a sudden rung alarm bells in my head where the first time she said it I said 'it'll be different with Kyd they have different needs'.... I'm an Idiot!!

It turns out a lot was going on behind closed doors that I didn't know about. I won't go into it but it was horrible to hear. What I will say is that I was informed by an ex member of staff that Kyd's feelings had been hurt several times after toilet incidents in his nappy (due to a bowel condition) which had left teachers openly and loudly commenting on the smell. I don't know if they thought he was unable to hear or if he was unable to feel any upset by their comments through not understanding but he is not stupid of course he could. He got embarrassed like any other child would. He might not be able to speak but he is able to have feelings just like them. Shame on them. Often when I picked him up he was upset I had just assumed it was due to his accident but I think there's more to it now.

I spoke to the Headteacher who blamed the class teacher.... I spoke to the class teacher and she blamed the head..... This went on and on until I decided that this was unacceptable and decided to pull Kyd from that school and research the new school properly this time.


His second school was brilliant. The teachers really went all out. We had a few teething problems with the head and her understanding his medical needs but they soon understood. Sadly we had to move him after a few years as we had moved to a different area but the next school was even better!

George Palmer School, Reading have been the most accommodating of the schools. They've researched and prepared for his needs. Each of his teachers have learnt from the last and he hasn't had to worry about getting to know them as the teachers are all so integrated in the school. They have provided for each of his needs and made a full part of the school. His medical needs are accommodated for and they are fully understanding of all the needs he has outside of school. This is what all schools should be doing. This is what a Primary Education in the UK should be. This school put my faith back in the Mainstream Educational System.

The Children of all these schools have been amazing! They have all personally taken the time to get to know Kyd and we can't go down the street anywhere in Reading without at least 5 people saying 'Hiya'. These children are from every background and every culture that you can name and think of.

George Palmer school is at the heart of a well known area in which poverty is ripe, yet around the corner there is an area in which poverty certainly is not ripe. You can imagine the variety of families at this school and yet each of them have taken the time to get to know him. Some of the countries of which these families come from wouldn't necessarily come across Down Syndrome in their everyday life back home, so for them this is another learning curve for their new life here. Other parents have said that their children are constantly talking about Kyd and how funny he is and that he has taught not only the children but the parents about children with Down Syndrome and that they are no different to any other.

He gets into trouble, he laughs, he plays, he interacts, he works in groups, he does PE, he gets involved in football rivalry, he plays wrestling in the playground and gets into trouble alongside the other boys!

He is just a normal boy, doing normal things and enjoying life.

This is an extract from the article in the telegraph...
'But in my opinion, one of the most important reasons for encouraging inclusion is that a whole cohort of children will grow up knowing someone with a disability – there are 45 more children who will go out into the world having experienced learning with someone (usually) less able than themselves, and I hope it will teach them a little bit about tolerance.
It does have its downsides, though. Alexander is seven and, although he has been invited to birthday parties, he has not yet been invited home to play with anyone after school and, frankly, I’m not sure how we would cope if he were, though Alexander has one particular friend who has been to play at our house a couple of times.
So far, the only times we go to other children’s houses to play are to those families I know from before children, or people we met at baby groups, and it is still seen as normal for me to go along for a chat, too.
But what is going to happen when Alexander turns 10, or 12, or older? We all know how important it is to have friends with shared experiences, and the same applies to a child with Down’s syndrome. That is one of the main reasons why many parents opt to send their child to a special school when it comes to secondary education, so that they have more of an opportunity to make friends.
For the time being, I make sure that we spend quite a bit of time with other “DS” mums and their children, to give Alexander an opportunity to make friends, and it has the added bonus of giving me and my friends a chance to let off steam to others who really understand'
Katharine Horrocks is chairman of  Down's Syndrome Oxford

I completely understand this worry although Kyd has an amazing outside of school life meaning at secondary school he can continue education in either a special needs school or a mainstream one and his social skills wouldn't be affected. He has friends in all shapes and sizes and of all ages. He has hobbies that involve him in several communities and he always has something going on. I have done this on purpose for many reasons but mainly so he has many learning aspects from across a wide range of people. We don't often get invited to birthdays either but Kyd isn't really that bothered by this as he's always got something going on which is obviously another bonus. I don't see this as a problem any more because he has such an amazing social life.

I don't have many friends my age with children that I see very often and this did used to bother me mainly out of loneliness but this is what social media is for now a days. I have a huge network of mums of all ages with children with downs online now (via Future of Downs) which puts me at ease with all the little things that crop up. Also our local support group (West Berkshire Down Syndrome Group) has been an ongoing support and there are many things that I can thank them for over the years. Other than that Kyd has a pretty normal life and is actually overly social and it's hard work keeping up!

In summary I completely agree with Katharine that Mainstream schools benefit ALL of the children involved BUT only when you pick the right one... obviously. I believe mainstream schooling provides the understanding of social skills from a much earlier age and that this is hugely important for our children. Special Needs schools have their benefits and sometimes they out weigh the mainstream ones but every case is different. Kyd has benefited from a mainstream education in Primary but as he is now in year 5 secondary school is calling and this brings with it huge decisions.

Mainstream or Special Needs Secondary Education????

We've decided a Special Needs school will be best for him at this stage as I think he'd get swallowed up by a mainstream secondary. His social life is, and will always be, hectic and so he has learnt as much as he needs to in that aspect from a mainstream education. It's time to focus on his educational needs and I think the Special Needs school will be able to focus more on this with specialists involved. He will then have had the best of both worlds and I think he will benefit from this for the rest of his life.

Schools are hard to pick and my advice from lessons learnt in the past.... Research, Visit and Talk to other parents with similar needs at the school. Also it might be worth asking if they've ever had any SEN kids at that school or if any of their teachers have any experience with DS.... often it is a big fat NO!

Sorry if I drivelled on a bit but it's a subject I have a lot of passion about yet find it difficult to express without patronising other parents decisions. Each child is different and each has their own needs meaning each decision is made differently... if you get what I mean.... and therefore each is neither right or wrong.

Anyway I'll shut up now...