Monday 17 July 2017

Is My Son On the Spectrum? An Update

Way back in October, C was two months into preschool and I wrote a blog post entitled 'Is My Son On the Spectrum?" At that time, the preschool leader had spoken to me about some concerns that she had about his behaviour and I was due to have an appointment with the GP. The past nine months have been a constant stream of appointments, meetings, forms and letters so I just wanted to write a bit of an update on where we are now.

At the GP appointment, she said that she couldn't see any behaviours that would worry her but she gave me a Autism Assessment self referral form. I was pretty annoyed as how could she see what C is really like in just 20 minutes and by just talking to him, not doing any tests? I filled in the form stating what behaviours and concerns I had, sent it off, then I received a letter in February saying that I would get an assessment date through in four weeks. I thought that was a bit soon as usually the waiting lists for this type of thing are months/years long and here we are in July and I'm still waiting.

In the meantime, the preschool leader suggested applying for our local Children's Interdisciplinary Schools (CIDS) Team to come out and assess him. The way this works is a few different people come out and undergo some tasks and activities with the child and if they meet more than three of the criteria, they will give the child some help to make sure that their needs are met in their educational setting. I was worried because C has very good speech and language so I knew that that would be one criteria that he didn't meet. After all his tests, he didn't qualify for help and was discharged. In our discharge meeting, they mentioned that it definitely was a positive thing that we had put it a referral for an autism assessment and the preschool already had in place the things that CIDS team could help with such as a quiet room and his own box of fidget/stress toys. They did give us a few leaflets on things like Heavy Work, how to build confidence and self esteem, managing his behaviour, ideas of play and how to make friends - all because his issues tend to be emotional and social based.

After this, I sent a letter to the Education Board asking for C to be assessed for statementing. A statement is basically a formal document stating a child's learning difficulties and the help that they will receive. I have asked for this because I know that C will need one on one help in a formal learning setting as even in preschool where it was mostly free play, he was very dependent on his keyworker. I'm really lucky that C goes to a great school who are wonderful in dealing with children with special educational needs and the principal sent a letter too to sort of back us up. The Education Board replied saying that they would assess him and shortly after, we met with the Educational Psychologist. She told me that she thinks C will have no trouble when it comes to learning and will probably take to Primary 1 quite well, but does agree that from her a point of view, a one on one would be beneficial for him. She has also put in a request for an occupational therapist to see C as he struggles with things like zips and buttons as well as a behavioural specialist.

These meetings all took place at the preschool and right now, we are into summer here in Northern Ireland so I'm really just waiting on letters for more assessments to be done.

When I wrote my original post back in October, I have to admit that I wasn't completely convinced that C did have special educational needs or that he could possibly have ASD but now that I'm in the midst of these tests, hearing from professionals and looking up his behaviours myself, I do believe that we will get a diagnosis of mild autism or Asperger Syndrome when our official assessment time comes. All I can do right now is help him control his emotions and build his confidence. I've bought him his own fidget toys for home, a communication fan so he can explain to us how he's feeling without lashing out and some books to explain feelings and how to tackle them.

Behaviour is still one of the biggest issues because he doesn't know how to convey them properly. I'd be lying if I didn't say that every day was a struggle. He needs to have a set routine and the slightest thing can set him off. We have to use "First..., then..." daily. He doesn't really know boundaries when it comes to what to say to other people. He can be a bit full on and share whatever comes into his head at that moment. His mind is wonderful and I am in awe of it. He is very clever and great with logic - the educational psychologist actually suggested explaining everything logically to him because he is more than capable and would probably understand things better that way. For example, he is a very fussy eater and sticks to what he knows. She recommended that when I give him something new, tell him that his brain and taste buds don't like it right now but we need to teach them to like it because the calcium is good for our bones (just as an example!). His preschool leader said that he is "scarily good with numbers" and right now he is teaching himself to read. He's not even 5 yet! My very own little Matilda.

I will do another update when we know more - wish us luck.

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