What if no-one ever understands him?

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I am a parent. So by nature of the job description I worry for the future of my children. I worry about wars and disasters and car crashes and bullying and wether or not my children will be messed up by my parenting. But mostly I worry if anyone will understand my son.

Because at six years and nine months old I still struggle to understand him myself.

My child is so unlike me. I try to imagine what life is like for him but in all honestly I just can’t.

I talk to him all the time. But he never talks back. I read to him every day but he never asks anything about the story or attempts to learn to read it himself. I make him food and although he eats it I have no idea if he is just tolerating it out of hunger or if he actually enjoys it. I sing nursery rhymes to him but I have no idea if he understands a word I am saying.

When he imageis sick I have no idea if he is in pain and if so where.

I know he loves lifts, hand dryers and mash potato. But I have no idea why.

For over 600 days all he would wear was the same jumper. Lots of people have had guesses as to why but only my son really knows. And he can’t tell us.

I took him to a sensory room recently where there was something called a musical wall. He touched that wall in the same place over and over again to hear the same song. I was so desperate to ask him what is was about that wall he so loved. I would have loved to hear his little voice join in as that wall sang ‘you are my sunshine’ for the hundredth time.

What was he feeling? Has he enjoyed the other places I have taken him this summer? Does he like school? What would he like for his birthday?

There is just so many unknowns.

I have read books. I have spoken to therapists who apparently have trained for years in his conditions. I have attended so many courses. I have even spoken to many adults who have the same conditions as my son. I have spent six years and nine months living with my son.

And still so much about him is a mystery. We are all guessing. And we could all be wrong.image

Why can’t he speak? Why does he flap? What is it exactly about lifts and hand dryers that he likes so much? Why is it so traumatic when I cut his nails, or wash his hair, or use a different plate for his dinner? Does he miss me when he isn’t with me?

I want to know. Because if I don’t know who else ever will?

So yes, I worry about the future of my non verbal, severely autistic son with neurofibromatosis and learning difficulties.

I worry that people will take advantage of him. Or hurt him. Or never allow him to be himself. I worry about whether he will ever learn to communicate or whether anyone else will be able to communicate with him.

There were moments today as he pulled my glasses off my face yet again and climbed all over me that I wondered how much longer I would be able to care for him full-time. And that scared me.

He is my son. I adore him. But I don’t always understand him.

And not for the first time I wonder…

What if no-one ever understands him?

If he was your baby would you not worry about that too?

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16 thoughts on “What if no-one ever understands him?

  1. Of course we would. It’s heartbreaking isn’t it, when our job is to make them feel safe and loved and happy, yet we don’t know what makes them feel safe and loved and happy. You are doing a great job, you do know lots of things he likes and dislikes, even if you don’t know why, and you will keep learning his language, step by tiny step. Xxx

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  2. If anyone can cope you can, as you are such a strong woman. It is natural for a mother to worry about her children escepially when they have a disability. Isaac is generally a very happy child and that is more that can be said for every child.

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  3. I can only begin to understand a tiny part of your heartache as my daughter is slowly becoming more verbal and communicative. Although you feel you don’t understand him, you, out of everyone understand him the most, and that, for him, is probably enough for now. Stay strong x

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  4. I just wanted to say, Im there with you, I often wonder the same. My son is non verbal but in the last few months I have been lucky to hear him talk but it is a repeat of adverts/films etc. Its not a form of communication. We did start to lose hope as he will be 7 in December. Even though we can now hear his voice we still dont understand him. Hugs to you xxx

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  5. this is the first post i have read of yours, and so insightful, capturing the thoughts of many parents who have children with special needs. I have a son with autism and post on a fb page called Joshua’s ABA Journey, we have worked very hard using a VB ABA programme along with biomedical and nutritional therapy and has made such a difference. If you ever need to message me on there, I would be happy to chat 🙂 Siobhan xxx

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  6. Thanks for this, I could have been reading about my own son. I have shared it on our Sing, sign and story-time Facebook page, I’m sure there are plenty of people who will identify with you x

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  7. Our son Zach was given a severe speech delay diagnosis at 3 and a PDD-NOS diagnosis at 4, at which age he was completely non-verbal (but very social/empathatic/anticipated rewards so psychologists were convinced it wasn’t autism) After years of weekly therapy (and a particularly excellent therapist for most of that time), we can now understand most of what he says although his language is still very quirky especially in written form. He’s almost nine. Language just does not come naturally to him at all. Every language rule has had to be (delicately and cleverly) drilled into him. He has hyperlexia and was an early reader (his therapist correctly thought that the way to get him to speak more would be to teach him to read first) and can read words at sight that he never says by himself in day to day language but his comprehension of what he reads is low. Like your son, ours loves music and could identify any nursery rhyme we were singing by pressing the farm animals on a tractor toy until he got to the right tune within seconds but he never sang them, and now he can only sing two correctly but never sings them unprompted. He loves maths, and is good at it, when it is symbol based but gets frustrated by word problems. Some of the behavioural issues sound familiar. Washing hair was also a problem for us and there was a two year period of hand flapping. He still spins in circles.

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  8. This was us only times 2. Twins. Neither spoke a word until the age of 10. They are now 21 Both are capable of holding a conversation. Both have ideas and plans for their future. I had all the worries you have now. Our children could not deal with the world at all. They were home educated and basically had little contact with anyone or anything in the outside world. We basically cocooned them so that they felt totally safe and secure. We did only the things they wanted to do. We spent years spinning hand flapping and lining up cars. We often doubted ourselves. We often felt guilty. We were often told by outside bodies and family that we were doing the wrong thing.when we made attempts to do “the right things” we had months and months of set backs and upset. We believe that our boys are heading towards independent living. They are capable of making most decisions now for themselves. What I am trying to say. There is hope. There is a future.you will be shocked and surprised. I am still stunned now when I look back at how much progress our sons have made.although our boys are still relatively naive I think with time they will learn how to spot someone who is untrustworthy. Tiny tiny steps lead to massive strides. My sons are living proof of that. There are times when you feel like you are hanging on by the skin of your teeth and all you efforts are futile the break throughs do happen. Sometimes they are so small but the joy you will feel for such a tiny step forward is immense and gives you the strength you didn’t know you had to keep giving your child all you can.

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  9. I could have written that blog post myself. Only my autie is 13 years old. I cannot even think of the future, as I get panic attacks. My biggest fear is that when I am not able to care after my son any longer due to old age or bad health, he will be in an institution, unloved and misunderstood, that he will be heavily medicated to keep him quiet. All those fears are part of my life.
    Hugs to you both.

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