An update on Master A’s development.

four year old. developmental delays, autism, legius syndrome

The main purpose of this blog post is to document how Master A is getting on with his development. I think this is important for me as well as others who are going through similar.

I realise I haven’t blogged recently or regularly at all. It has been busy and chaotic. Lots of things have happened, some bad and some good but I don’t want to discuss them here. I just want to update you all on how Master A is doing.

How is Master A doing? He is doing a lot better than a few months ago. But he is still not where he should be in terms of his development and speech. I haven’t really gone into too much detail on here. I have on my social media channels. This will change. I want to blog about him a lot more. Blog about most things really. Fingers crossed I have the time to do this. I have lots of things planned to make sure I can fit a lot more in than what I have done before. Just a quick note about what has happened and why I have been a bad blogger…my mum’s death had a lot to do with it. My anxiety hit the roof, I got depressed and so many other things happened. I struggled a lot with Master A, the whole idea of him being so delayed and having his other issues really got me down. It shouldn’t but it did. But now I see clearly now and have lots of things planned and have spent a lot of time trying to get him the help that he needs and deserves.

So what is going on with Master A? To cut a long story short, after lots of meetings, assessments, speech therapy and everything else, Master A has a developmental delay of about two years. He still has speech issues, that is still very delayed.

We are waiting on genetics test results for a condition called Legius Syndrome. To find out more visit The Neuro Foundation website. Now we know he hasn’t got NF1 (neurofibromatosis) I have discovered a condition that is like it called Legius Syndrome. This can affect the child’s learning, development etc. Reading about the symptoms, it exactly matches what Master A is going through and has, the developmental delay, including the cafe au lait marks.

One major thing that has happened very recently is that Master A has had an autism assessment and the result from this assessment is that he IS showing signs of being on the spectrum. The paediatrician wants to wait for him to get a bit older before diagnosing him. What do I think? I think he is on the spectrum, as time goes on, more and more signs are appearing. He is having meltdowns, he is stimming a lot. The stimming has increased a lot recently, certainly since he has been assessed. Not sure why. He has hurt his bottom lip, I think, by scraping his bottom lip with his teeth and also he is fiddling with his bottom lip a lot. These are the newest things I have noticed him doing. He also bites his clothing and anything else nearby when he gets stressed or has a meltdown and he flaps his hands.

There are so many things that Master A does that makes me think he is definitely on the spectrum. I think I was in denial with it all when he was assessed a few weeks ago. I think I ignored the signs, maybe. But now I am embracing Master A as he is. He is an awesome little boy who I love very much, I have always loved him the same. I want what is best for him and I will not give up fighting until he gets what he deserves.

To be honest, I can’t complain about anybody who has dealt with Master A..his nursery, speech therapist, health visitor and paediatricians (yes he has two!) and anyone else that has dealt with him or helped him are all amazing and they have his best interests at heart.

Master A is starting school in September. I am very concerned and nervous about this but I know for the fact the SENCO and his teacher at primary school is fantastic. They do what is best for him. He is going to get a specialist teacher to provide advice for the transition to primary school. He was assessed for this on Monday. I am waiting on the report for this.

Wow this is a long blog post, hopefully the next one will be shorter!

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