The Future for our Disabled Children

For those that don’t know, I am a carer for two very different teenagers. For five years I have been working with Dom, a 13 year old with Autism and ADHD. Since September I have been working with Faith, a 13 year old with Down’s Syndrome and suspected Autism.

My jobs are rewarding and challenging. I care a lot about Dom and Faith. As they get older, it is hard not to think about their future. 

The reason I decided to write this post came about as a result of going to the park with Faith and my dog Walter and her dog Bella last week. It is obvious to people that Faith is disabled. The vast majority of the people that come into contact with Faith are understanding of this. 

When walking the dogs, Faith and I came across a group of girls who looked around the same age as Faith. They were sat talking on a bench. As we walked past, Faith said, “hi girls!” All the girls said hi back and smiled at Faith. 

It got me thinking; would the same happen to Dom? Like Faith, Dom loves talking to people when we are out. But would a group of teenage boys of a similar age be as friendly with him? What would they make of him jumping up and down, flapping his hands and asking the most random and bizarre questions?

Faith wants to do things herself. She loves nothing more than being given a job to do. She really wants to develop her independence. The same cannot be said for Dom. He is not as intrinsically motivated as Faith. Dom operates on the mindset of ‘what’s in it for me?’ 

Dom’s autism has changed as he has grown up. It seems to his parents and I that each week there is a new challenge. Dom can display challenging behaviour at home. I am talking full on, violent outbursts. In the five years I have worked with Dom, he has never been violent towards me or in my company. It has taken him years to actually talk openly with me about these outbursts. 

At 13, Dom currently stands at 5’8″. He is going to easily clear 6ft. For the most part, Dom contains his upset and anger when in school. There have been the odd incidents where he has muttered under his breath but there has been no aggression towards himself or others. He is like a coke bottle; there’s only so much pressure and stress he can withstand until it becomes too much. The lid of the bottle flies off. 

Will there come a time when Dom will struggle to deal with his annoyance and frustration in public? I hope not. Dom would be mortified. 

Another difference between Dom and Faith; Faith isn’t aggressive. Instead, Faith goes on a ‘go slow’ as a way of showing her displeasure. She never has a sense of urgency but everything takes ten times longer to do. 

Members of the public react so differently when I am telling Dom or Faith off. With Faith, I get looks of disapproval when I tell her off. It’s as if she should have a get out of jail free card so to speak regarding her behaviour. Like it’s ok for her to be cheeky or ignore me because she has Down’s Syndrome. Yet with Dom I will hear people tut, see them roll their eyes or look happy when I am asking him to use his indoor voice or remain in a queue. 

So my biggest worries for Dom and Faith’s futures are very different. 

If you are not firm with Faith from the get go she will know that she can get away with sarcastic comments, ignoring requests and getting others to do things she is capable of. My biggest worry is that she will not reach her full potential. 

Dom needs to be around people who get him and that he responds well to. There are no grey areas with Dom; he either likes you or he doesn’t. My biggest worry is that he will be completely misunderstood and so he will end up just being contained rather than being an active member of society. 

Let’s hope my worries for Dom and Faith never come to fruition. If I don’t continue working with them as adults, I really hope that they have the opportunities to live fulfilling and happy lives.

 

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7 thoughts on “The Future for our Disabled Children

  1. Great post. I know exactly what you’re saying. My eldest son has Asperger’s, my youngest, as you know, has Down’s. My parenting experiences with regards to other people’s reactions has been very different between both. One of the reasons I decided Freddie should go to special school is that they don’t have that attitude of “how can you tell him off, he doesn’t understand” – they expect good behaviour and have strategies to encourage it, tailored to his way of learning.

    Liked by 1 person

    • Both Dom and Faith attend (the same) special school. It is the best thing for them. You are so right; it is about tailoring to the individual. Has Freddie always been in a special school? x

      Liked by 1 person

      • Yes, he has. He went in straight from nursery. We looked at all our local mainstream primaries, two were quite unwelcoming, and we were advised against them on the quiet by the District SENCO. The other, which my daughter went to, would have welcomed him with open arms, but the set-up in Foundation stage wasn’t suitable for him, they couldn’t have kept him safe. But when I visited the special school I got a good feeling, and they worked closely with the nursery. The teachers are great, really positive and dedicated. I’m glad our children and young people have support from such good people, yourself included.

        Like

      • Freddie and your other children are lucky to have such a fantastic Mum. I love your posts about him, especially the photos! How old is your son with Asperger’s?

        Liked by 1 person

      • Thank you. He’s nineteen. Away at University now, though he’s back at the moment for summer. I’m really proud of him and how he overcomes his difficulties. I’m proud of all of them. My daughter has the most amazing coping skills and maturity, and so much thoughtfulness.

        Liked by 2 people

  2. Kate says:

    Hi Gemma, I would like to nominate you for the Bloggers Recognition Award 🙂 The rules are in my post 🙂 xx

    Like

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