Proof of the Pudding

 

I took Sam to a birthday party the other day.  At one time, back when he was in the Infants, birthday parties (usually discos) were ten a penny.  Hardly a month went by when he wasn’t invited to some sort of ‘do’ where he would spend a couple of hours clinging to my leg, only to venture away in the last five minutes or so.  These days, though, the parties are few and far between.  It’s partly because his current school is so much smaller; with nine children in the class, the opportunity for birthday celebration is considerably reduced, so there was much excitement when the invitation came home, and even more when the Big Day arrived.

These days we don’t go to parties in other people’s houses.  I say ‘we’ because the times I left him on his own were few and far between.  Once he decided to play silly beggars with the hostess and spend his time running in and out of the disco (much to the poor woman’s panic), another, he was most dischuffed to be left with a  beautician, so I came to the rather obvious conclusion to stay.  No, these days the parties we attend tend to be activity based, and last week’s was no different.

What struck me, though, wasn’t so much how this group of young people threw themselves into the activity, with even the most fearful of them joining in sooner than eventually and enjoying himself hugely, but the way that they enjoyed each other’s company.  The boy who in the past had stuck to me like glue was off with his mates.  I had nothing to do other than to stand around and chat with the other parents who, like me, found themselves abandoned in favour of friends.

It wasn’t that no one had a strop (because it was their party and they were going to cry if they wanted to), no one had an accident and spoiled their best party clothes, everyone was on their best behaviour and everyone had a great time.  Pleases and thank yous were said, they served each other with smiles, sang ‘Happy Birthday’ with gusto and I felt so proud of them, of the way they so effectively, just by enjoying each other’s company, showed  that kids with special needs have just as much capacity for joy as anyone else, and can just as much behave themselves in public too.

No, what has been on my mind on and off ever since, was the fact that these friendships, the obvious affection between this group of special kids, was totally natural, unfeigned, and had nothing to do with me.  As a parent, I have been painfully aware of the role I could play in helping my children to form friendships.  I have chatted with tea-drinking friends for hours while the babies played around us, and later, while we followed them around gardens, stopping them from falling down the steps and rescuing them from all manner of dangers.  I have catered for numerous children over the years; these days I am the queen of the fish finger.   I followed Sam’s journey through mainstream primary school with anxious eyes and an aching heart as the party invitations, once plentiful, dried up, and the playdates were nonexistent.

When you listen to parents of children with Down syndrome talking about their decision to send and/or keep their children in mainstream education, their social lives, their social skills, are often the reason.  I know, because I worried about it too.  But the thing is, by the time he was in Year Six, I began to wonder how it must feel to be Sam in a mainstream school.

How must it feel to be the only boy like you in a school?  How must it feel to be everyone’s pet, from the receptionist to the little ones in Reception, and yet the number of times you have been to play at someone else’s house can be counted on the fingers of one hand?  What must it do to you to be treated by other children (mostly girls) as some sort of doll, or (mostly by boys) as someone you can’t stand up to when they ride on your scooter?  How must it feel to be fond of people, and yet to not know how to communicate with them or how to play?  When we thought about secondary school we wondered how it would be if he continued to have a TA with him for every moment of the day.  How would he make friends with the presence of an adult constantly there?  How would he ever get a girlfriend?

And his vulnerability.  In all good conscience, could we have carried on with the mainstream experience, knowing how suggestible, how defenceless he really is?  Sam has no concept of anyone not having his best interests at heart (apart from his brother and sister, with whom he engages in perpetual competition).  Would he even understand if someone attempted to bully him, to ridicule him for his difference, encouraged him to do something silly, or dangerous?  I might want him to learn from good examples, but, realistically, how much of that learning will happen in the classrooms of a mainstream secondary school?  While the DSA might recommend children like mine being taught in a mixed ability group, knowing what I know about out of class interventions and the all pervasiveness of setting, how much of that really happens?  I honestly don’t know.

When we made the decision to send our son to a special school, his social life was the last thing on our minds.  For us, the main thing was delivering an education that actually mattered to him, that kitted him out with the skills and knowledge he needs to live an independent life.  Like reading.  Or money.  Or getting on with things on your own without an adult constantly on your shoulder.  These were the reasons we did what we did.

But the thing that has taken me by surprise about Sam’s most special of special schools is the care that is taken with his social learning.  Forest school, life skills, discipline; so much is geared towards Sam learning what it is to be a friend to someone else and what it is to have someone be a friend to him.  He doesn’t always get it right.  Only this week he has been in big trouble for fighting in the playground, but for me, the proof of the pudding is the parties.  Now he goes along, not as anyone’s pet or plaything, the not-quite-real-boy who none of the children can quite work out, or anyone’s nod to social inclusion, but as an equal.

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10 thoughts on “Proof of the Pudding

  1. I find this really hard to read. I have a daughter with Downs Syndrome who is doing well in mainstream education but the invitations for social opportunities don’t arrive…..

    1. Ah, I’m sorry about that. Every child is different, and this is just a record of Sam’s experience. I’m afraid that Sam didn’t do very well academically at mainstream school, so we needed to make the change, and the friendships have kind of come along as a side benefit. One suggestion might be to get your daughter involved in some sort of SEN social group, if she is coping academically? I know that having a friendship group outside of school did me the world of good in my ‘tricky’ teenage years.
      Let me know if I can do anything to help xx

  2. Thanks for sharing this Nancy. this was a very encouraging post. When we look for placements in specialised classes for our special needs students, we want what is best for them. We hope that they are going to fit in, learn life skills and make friends. I worry about them so much. Would love a crystal ball.

  3. Thanks for sharing, I hate the way special school still feels so taboo. JP wasn’t coping in a mainstream nursery so we made the decision to send him to a special school. He entered in September in reception class and all being well will stay there until he’s 19. We love that he will get this continuity and hopefully this will help with his emerging needs as it does look like he has ASD as well as DS. It did feel difficult for us as all his peers with DS went off to mainstream, but he is happy and that comes first. Virtually all of his self harming has stopped and he literally runs out of the door in the morning to get on his bus. He is 1 of 8 in his class, with 4 adults, he swims twice a week in the school’s 20m hydrotherapy pool, enjoys PE, music therapy and lots of other things as well as learning life skills. For the first time ever he is making friends of his own accord too, he was babied by the girls at nursery, and I could only imagine this getting worse as he got older.

    1. Sam was ok in the infants (as far as I knew), but… I wish people had been honest with me about how it really was and how he was really getting on, because I went through some terrible times getting him there.
      Ah well. Hindsight is always 20:20, isn’t it?

      1. We can only do what we feel is right. JP has been affected quite severely by the DS, he turns 5 on the 17th but his cognitive level is that of a 12-18 month old. It is hard sometimes as my 26 month old twins are drastically more advanced now. JP’s had open heart surgery, closed heart surgery, two major abdominal surgeries and one minor abdominal surgery too and I don’t think any of that has helped matters. We all have a different journey but it’s lovely to hear other Mum’s speaking up and saying special school is good (when the time comes). In my local DS group I’m made to feel it’s very much a dirty word which makes me sad.

      2. This is exactly the reason why I wrote this post. Children with Down’s, just like every other child, are all different. Some thrive in a mainstream school, some do not – just like ordinary children. The great thing about DS is that we, as parents, have a choice (so long as the special schools haven’t been closed!) and can move our children if they aren’t getting along – which parents of non-special children can’t do, unless they pay £££
        I think we need to seriously challenge the assumption that an education in a special school is shutting children away like a dirty secret, because it’s really, truly not.

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