30 June 2010

Here's Where We're At

Last week we were told that Nipper has Asperger's Syndrome and probably ADD/ADHD as well. I wasn't entirely surprised as I figured that a 3 year old couldn't be consistently 'difficult' without there being something else going on. Having said that I'm feeling a bit shell-shocked and a bit 'headless chicken' as my brain hasn't stopped going over the diagnosis yet and I'm worrying about what it will mean for Nipper and for us as a family. Everything is the same as before diagnosis yet oh so different too. But Nipper is still Nipper when all's said and done.

I've found Nipper to be a handful since he was around 18 months old. I thought that I'd forgotten how hard it could be to look after a little one since it'd been 10 years since I had Miss Muffett. I followed all the advice given by the health visitor with regard to discipline and trying to get him to eat properly (at the time he would only eat yoghurt and fruit puree). But we didn't have much success. She eventually told us to forget doing 'time out' as it clearly wasn't having any effect. We also tried the 'this is what's for lunch/tea and if you don't eat it you'll go hungry' method but it made little difference and he would go from one breakfast to the next (and still does quite often) without eating anything.

I thought I was doing a bit of a crap job at the whole 'mum' thing and so arranged for Nipper to go to nursery several mornings a week as I figured that being with other children would help him to learn how to behave, get him to eat etc. Everybody said that he was just being 'a boy' and that boys developed slower than girls and were more boisterous. However, not long after he joined the nursery they expressed concern over his attention and concentration and about him wanting to go off and do his own thing all the time. They chatted to the health visitor but she seemed to think that everything was ok, and later I was told by a different health visitor that Nipper just knew his own mind and was awkward and stubborn.

Nipper moved up to the 'pre-school room' at nursery about a year ago. They continued to be concerned about him and in April asked my permission to call in the SENCO (local authority special educational needs co-ordinator). I agreed and talked to the health visitor again. This time she decided that perhaps she had better refer him for a paediatric assessment, especially as he was due to go to school in September and we've been having 'issues' for quite a long time. I asked the nursery to jot down their specific concerns so I could take it, along with my concerns, to the paediatrician. I was horrified to be given a 4 page report with a long list of issues on it, far more than I'd been led to believe, and including that there was a gap between his age and his development, and also that he wasn't meeting his Early Years targets. I'm feeling pretty annoyed, and rather let down, that we seem to have suddenly gone from there being a few areas of concern to him seemingly not being able to do anything appropriate for his age. It can't have happened all of a sudden so why didn't the nursery tell me sooner!

Anyway, the meeting with the paediatrician was very interesting. He was quite angry that Nipper hadn't been referred earlier given that there had been concerns for quite a while. His assessment is that Nipper has Asperger's and is clearly hyperactive with attention issues. Now we have to wait for a language assessment as there are concerns in that area too. It's very difficult to get Nipper to do what you want and it's not clear whether he fully understands what you are saying. When you chat to him he frequently talks about stuff which is completely unrelated to what you were talking about. It's almost impossible to get information out of him and though he will ask "what" and "where", he never asks "how", "why", or "when". The paediatrician can't make the ADHD diagnosis so we have to get his report plus the SENCO's report and go back to our Doctor and request another referral. We should also apparently request a referral to a dietician to get some help with his food issues. In addition to all this we think that Nipper may have some sensory issues too but we're not quite sure who should assess that - hopefully our Doctor will know!

I'm hoping that at some point someone will point us in the direction of getting some useful advice on how to manage and help Nipper. At the moment we have a diagnosis but not much else. I don't like labels but I would rather have the label of Asperger's than for people to think that Nipper is purposefully defiant, awkward and stubborn!

I feel a bit 'all at sea' at the moment and as if I should be doing something right this minute to help Nipper. I'm hoping that a good trawl of the internet will point me in the right direction. When I started my other blog two years ago and named it Tilly Tatas ('tatas' being northern dialect for a journey) I certainly didn't think that we'd be off down this path. You never know what's around the corner!



  1. Hi Tilly, thanks for popping in to my blog. I'm not surprised you feel let down by the preschool, but glad you were then able to get a fairly quick diagnosis. I hope you don't have to wait too long for the language assessment. Have you contacted Nipper's new school yet? I would suggest that you get in touch with the Senco there as soon as possible.
    Life with an Aspie kid is a real rollercoaster ride, and your little Nipper looks absolutely gorgeous!
    Rachel - contented

  2. I'm so pleased that I could be of help. Let me know if you want me to try and dig out those books for you. Hugs xx

  3. Rollercoaster is a good description - but i certainly wouldnt change the ride!!
    Hope you have a good Senco who can point you in the right direction. And see if you have a local support groups :)

  4. I wish you much luck Tilly. One good thing that you have a diagnosis (or partial) early so you can start getting the help you need. My son is 10 and we still don't have a diagnosis, in fact they just think he has had something in his past that has affected him and made him the way he is. Which is disappointing, as a Mother you know when there is something more that is causing the behavior, especially when you have other children that are completely different and completely 'normal'.
    I hope you get the help you need, good luck.


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