Why I Struggle When My Special Needs Child Gets ‘Star of the Week’

So my 9 year old son came home from school on Friday with a certificate and photograph in his bag. There was no eagerness to show me and no message in his school diary; it was just there. Of course I am proud of him and told him so and absolutely it will be displayed on his bedroom wall to honour his achievements like his sisters are in her room. That is never in doubt. However, I have to be honest and say I really struggle when my son gets ‘star of the week’ and here is why:

1. It reminds me just how far behind he is academically.

It’s a sobering thought that my son has been at school five and a half years and is still working at pre-school levels in many subjects. The very fact he still has no idea that star of the week is any sort of aspirational incentive to even aim for says it all. He isn’t being modest or shy in not showing me his certificate; he honestly still doesn’t get the whole social aspect of celebrating achievement in any way. His twin sister commented on his award saying ‘well done Isaac but…’ and she went on to ask why he is still so far behind her. That’s hard. You see I live with my child daily and I know he struggles but seeing it on paper seems to somehow make it raw. It hurts. I am proud of my son but sad that he is behind so much. I don’t think anyone wants their child to be 7 or so years behind their peers in any way.

2. It makes me scared for the future.

I try not to think of the future. I live everyday and enjoy the moment but wisdom would tell me that I do need to plan for the future too. I shared my sons achievement on social media and today someone asked me in person what happens to children like my son when they finish education. The reality is my son will likely not be suitable for college and academically will never reach the level required for university. Employment is pretty unlikely too so our current options include him living at home and attending day care services. That’s not what I planned for my child when I conceived him and carried him for nine months, and although I do need to be mentally prepared for this seeing his star of the week award just feels like his future is all planned out and that is scary. His options are limited and seeing his academic ability on a laminated sheet makes that a stark reality. I won’t lie, that is hard to accept.

3. It makes me feel he is being defined by his ability to learn.

When I think of my child I think of am energetic, fun loving, teddy chewing, mischievous little brown eyed boy who does the best squeezy hugs and who loves his food. I think of the child who has incredible gifts in communication despite having no spoken language. I get so much joy from singing along to the songs he plays on his iPad and going to lifts with him. I see a child who gets so excited every time Bing Bunny comes on the TV that he bounces in the armchair he is sitting in. I see a child who could go hundreds of miles to places on google street map even though he has significant visual impairment. I don’t see his lack of ability to read or write or speak as an issue and none of those difficulties define him. So when I see his star of the week award I hope that this is not just how society sees my child either.

My son will always struggle with some things. Professionals and medical specialists have told me it is unlikely my son will ever speak to me. Education have told me he won’t ever attend a mainstream school and college or further education is unlikely. It’s a very sobering thought but with that comes my absolute determination that my son should never ever be defined by his struggles.

So I will stick his award on his bedroom wall and smile. It’s great he has been recognised. It’s great he is making progress but I never forget that for everyone of us life is much more than our ability to learn or how far we go in education.

I struggle when my son gets star of the week because his ability to achieve should never be limited to traditional education. I am raising a remarkable, brave and wonderful child who is breaking the mould in life. He is a star in so many more ways than just trying to write the digit 2. One of the many reasons I write about him is to help others see beyond his academically ability (or lack of) so I will stick that award up and get back to celebrating my son in every other way I do daily.

Don’t ever let educational achievement define anyone. We are much more than our ability to learn.

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7 thoughts on “Why I Struggle When My Special Needs Child Gets ‘Star of the Week’

  1. Hi. I’m another mom of a non verbal 4 year old with ASD. I see your struggles as I’m faced with them every minute of every day. I really hate the “not knowing” of autism, I am constantly wondering if he will be able to finish primary/secondary school, if he will ever have a job, a friend, an independent life… I would just rather know now so I can make my peace with it. That’s why I hate his developmental reviews as it makes me really depressed to see how far behind his peers he really is. For me he is an amazing, funny, cheeky little monkey but it’s not always easy to stay positive!
    Ana

    Liked by 2 people

  2. Whenever Ben gets tested on what he knows or has learned at school, his results always show him at a preschool level. Ben does speak a few phrases but is generally considered non-verbal.
    There’s really no way to know what Ben *actually* knows. He may be just refusing to take the tests. He’s surprised me many times with knowledge of things I was told he didn’t know.
    We just want him to live up to his own potential, be the best Ben he can be.
    That Star Of The Week may mean more to your son than he can express. Congrats to him and to you as well!🌟🎉🎊✨

    Liked by 1 person

  3. That is so beautifully written. It’s amazing our children’s life flashes before your eyes sometimes. I try and stick in the here and now, the future can be a scary place to look towards sometimes x (I may sound a little melodramatic here but hopefully you know what I mean haha).

    Liked by 2 people

  4. Your writing is so moving that I have tears in my eyes. A little boy who communicates using google maps is an extraordinary little man and can in no way be compared to his peers. He is not so much lagging behind other children but he is on his own path.

    Like

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