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Living with ACC

I thought I would give an update on how my toddler is doing as he has just seen the neurologist for his 2 year check. He was diagnosed with the condition Agenesis of the Corpus Collosum (ACC) when I was pregnant and we were given a fairly negative prognosis, thankfully he has proved them wrong and is developing really well.

At 2 years old his language is quite delayed, by his age most children will be able to say around 50 words and are often putting 2 words together. He now says about 4 words, but none of them regularly. Aside from “mine”, he’s got the hang of that one and shouts it at his brothers often!

He seems to have a good understanding of what we are saying and can follow simple instructions, which is a really good sign. We go to a speech therapy group run by the university, they say it’s clear he has good understanding of what people are saying to him and he’s starting to say the odd word there rather than his usual “ah-uh” type noise. He does get frustrated when we can’t understand what he wants to say so I really must sort out some other forms of communication for him.

He has just started to make animal noises, which is really sweet. So far I’ve heard him say “moo”, “buck”, “woof” and “miaow”. He really loves animals and we’d love to get him a buddy dog, we think it would really help him as he grows up.

Physically his development has been good, he is walking and loves climbing. In fact his climbing skills are really quite impressive so we’re thinking of starting him bouldering. He has started to develop balance issues, he will fall over walking across the room (even when it’s free of toys) and has fallen down the bottom part of the stairs a few times. I mentioned our concerns to the neurologist and she said his coordination issues combined with the speech delay suggests he has dyspraxia (a fairly common issue for people with ACC).

He isn’t a great sleeper, he often takes quite a while to settle and will wake at least once in the night. We’ve recently bought a super king sized mattress and my dad made a low frame for it. We have it sideways to give us more room and when he wakes in the night he comes into bed with us. It is the only way we can all get some sleep, he is still unsettled, but it saves one of getting up to him regularly throughout the night.

He still likes to bang his head against the end of the bed when he’s going to sleep and will bang his head on the floor in temper (which we ignore!).

Socially he’s doing brilliantly, he is sociable and wants to tell people things when he meets them so will point to things and say “ah-uh” repeatedly! He smiles and laughs and wants to copy everything his big brothers do. He’s also adjusted well to being a big brother, he seems to get that he’s going to have another brother to play with and gives the baby toys to play with. The only sign of jealousy I’ve seen has been a couple of times when he’s got in the pram and pulled a blanket over himself as if he’s the baby! I think he’s just reminding me that he needs to be my baby boy still.

The next thing for him will be some more speech therapy via the NHS, the neurologist would also like him to have some more physiotherapy to help improve his core balance. He’s also due a check with the endocrinologists who will see how his hormones are behaving and check his growth (he seems normal sized to us, but the growth hormones start to take affect from 2 years apparently). We still think he takes longer to take getting over bugs than his brothers too, which can be a hormonal issue.

Over all he is an absolute joy, he wins people over wherever we go with his big brown eyes and cheeky smile, I’m so glad he’s my little boy!

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