Thursday, 24 June 2010

Non-neurotypical Nipper

I'm not sure quite how to write this post so I'll just dive right in - 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.

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 blog 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, I'm not sure how to start the post. But definitely congratulations are in order. I know a few people with Aspergers and am sure that your son will be much better off now that you can access resources to help understand where he is coming from. I recently read a book by an adult who has Aspergers and has made an amazing life for himself - warning there's some laugh out loud moments and some heart breaking ones too ( Wishing you all the best for the future, CM

  2. oh poor you :( This sounds like a really difficult time. Stay strong & positive & things will come good. At least you've now found the problem so you're moving in the right direction. My friend has 3 children all with behaviour problems.....don't know how she does it but she does! Thinking of you :) x

  3. You poor thing, so frustrating to have people tell you nothing is wrong when he could have been treated. Mind you you have caught it early so hopefully if he has the right kind of help he can learn to develop properly. Tim's brother is 25 and he has Aspergers. He's actually pretty good and is very skilled in mimicking normality (that seems to be what they do as they don't think and logic and reason as we do so it's pointless trying to do that). He's pretty smart, speaks a couple of languages and has traveled round Russia on his own.

    Have you read 'The Curius Incident of a Dog in the Night Time'? Well worth a read:

    Sian x

  4. Gosh, what a lot has been happening to you! I am sorry that you have had to deal with all of this, and you are certainly right, that the nursery appear not to have done their job correctly. I feel they should have alerted you earlier, and also looking back on what you have written, perhaps the HV should have spotted some signs of concern earlier.

    Sadly I am not sure I can be of any help. Although when I completed my degree (Early Childhood and Curriculum Studies - I graduated in 2008) I did do a section on SEN, and am familiar with Asperger's. In fact, I may even have a book somewhere on it....will have to look and see.

    Have you ever read a blog called Contented? The lady who writes that is Rachel and her little boy I believe also has been diagnosed with Asperger's so it might be possible that she can help you with any questions you might have....I really don't know. (I think you might be able to find the link to her blog through mine....??)

    If I can find out any information, I will get back to you.

    Look after yourself. Hugs.

  5. victoria montandon10:42 am, July 01, 2010 a way I understand where you are coming from, I have three boys, harrison is the eldest at 5, 6 in August, he has shown signs of something, we are under the local team of school nurses, he smells things, wont eat anything new, blows on his hands and doesnt mix very well with new this space.....chin up hun and take each day as it comes...

  6. I am glad that at least you have some clarity on a diagnosis. Having a diagnosis means you can look things up, find resources on the internet and connect with people who have children with the same issues. This is a clear reminder to you that you are a good mom and you need to stop blaming yourself when things are not perfect. It sounds to me like you are doing everything right, what you needed was some clarity. Unfortunately, you probably should have had some answers from 'experts' earlier rather than just pages of notes. I am confident there is a website and resources group for parents with children with Aspergers. I am thinking of you and hope that you get even more clarity on some of the outstanding issues so that you can start looking for resources and help that will benefit both Nipper and yourself as you care for him.

  7. Hi,
    As a Mum, I am trying to imagine what it must have been like to have been given those pages of notes. I can not.
    I am a teacher and over the years I have had students in my tutor group with various levels of ADHD and Aspergers. At present I have a 14 year old lad with Aspergers and next term he will start his GCSE courses. Things do not always run smoothly for him at school, but it is not all bad either. he has a circle of good friends, he has made good progress and we both get on very well. I do have a very frank, honest relationship with his Mum and I hope that when Nipper starts school you can build up a similar relationship with his teacher. It will help you both. Do some research, become informed then stick to your guns about your concerns for him. Use your experience so far as to why you want answers and help and to not be told all is ok. I shall see if I can get any info for you. If I can I will be back.

  8. Hi Tilly, I've followed you from Kristina's blog. No one is born as the parent of a special needs child, and it's a deep shock and a steep learning curve for every parent to have to cope with ((hugs)). You sound to have a brilliantly loving and supportive family, and now you have a tentative diagnosis, things can only get better for you and your precious son (I promise)!

    BTW, my hubby started sleeping with earplugs 18yrs ago, and he STILL does (rolling eyes)!!

  9. Oh my! I have a couple of friends who have children with Asperger's Syndrome - don't despair...Blessings and Peace be with you...


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