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clemandbensdad · 4 years ago

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So, let's talk about Ben.

Ben is currently six and a half.

He is a little boy with a lovely smile. He has a genuinely pure, kind heart. He has a lot of love in that heart; he loves his family, and adores his big sister.

He loves Thomas the Tank engine, Blaze and the Monster Machines, Dora the Explorer. He particularly loves anything to do with vehicles or numbers; a show called numberblocks is a big favourite.

He loves numbers and maths. He can count very high; he can recite times tables songs. He recognises numbers everywhere and is fascinated by them.

He loves having his family around him. His sister likes to get up late on weekends, but he cannot feel content until she is around him. If he is ever told off for being naughty, he cries for his sister to come and hug him. On the rare occasions he has accidentally hurt her, he gets incredibly upset and comes to give her a hug.

He loves his Nana and will incessently ask "Kiki's house?" Because he wants to go there.

When you hit on something he wants, and he has successfully communicated his wants, he says "yessss". I cannot possibly get across in written words how satisfying it is to hear my son say his "yesss". The way he says it goes well beyond a mere word. The way he says it goes beyond cute. I can't describe it, but I would go to great lengths to get a "yessss" from Ben.

He loves physical things. He adores playing in water. He loves slides and climbing and running.

Ben smiles, he laughs and he sings all the time. He will randomly hug his "nonny" and me. When I come home from work, I hear "daddy!!!" And he comes to hug me..

But there are challenges.

Ben is severely autistic and has ADHD.

He is doubly incontinent and still wears nappies (you may tell from my wording that we are a UK family).

Ben has been limited speech and communication. He can make basic needs known ("drink, please, Daddy") and he can recite certain stock phrases he has learned from TV ("Awww, I'll never get my playground now"). The most difficult aspect of being Ben's dad is when he cannot communicate; when he gets really upset about something but he just can't make us understand what is wrong or how we can help him. These times are heartbreaking.

Ben is hyposensitive. Not everyone realises that autistic people can be hyper sensitive, hypo sensitive or a combination of both. If you are not that familiar with autism, your idea of it may be people who find noise, touch, etc very difficult. They are likely to be Hypersensitive.

Ben is the opposite in most senses. His senses are dulled and so he craves sensation. He stims by flapping his arms to create sensations. He squeals all the time (it can be ear splittingly loud) to create noise. His pain threshold his high. He isn't that aware of when he is full, so seeks the sensation of eating all the time. He will sometimes thrash about to create sensation. He sometimes wants to grab hold of us or even bite us. He loves being wrapped up tightly.

The ADHD mean that he switches what he wants to do very quickly. He will generally be doing whatever it is you least want him to do, or the thing that is most dangerous. He's watching TV. No, he's in the kitchen looking for sweets we don't have. Now he's upstairs in his sister's room. Is that a running tap i hear? Yes, he is filling the sink because he loves water. We need to get up there before he floods the bathroom again. Now he has stripped naked and wants to go in a paddling pool at 7pm. Ben, at you pooing? You're not? Ok. YES YOU ARE!!!!

Ben needs to wear reigns whenever we go outside because he will run off into the nearest road or traffic, because he finds it fascinating.

He will want to watch the same episodes of TV shows over and over, and he wants them loud.

He loves food, especially pizza. He doesn't know when he is full and seeks food when he is bored and his ADHD kicks in. He is constantly looking for food and during lockdown we haven't been able to stop him gainign weight. He is overweight now and we feel incredibly bad about it.

Ben sleeps pretty well, but has a tendancy to get up at 5am.

He is well behind developmentally. He did not walk until he was nearly three. He hasn't lost any of his baby teeth yet (and they are really small, I don't know if they means anything).

His squealing and stimming brings some really unpleasant comments from the public sometimes, especially older members

Ben has had 1-1 support at school, but will be starting at a special school in september for children with disabilities and special needs. He will be there until he is 18.

Ben is almost certainly going to need us caring for him for the rest of our lives.

Coming to terms with all of this, especially the last part, is what this blog is all about.

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