From Nothing To Almost Too Much

Well, It's been a long time since I've been in this space and I'm sitting here, in front of the computer, wondering where to start as so much has happened. We've gone from knowing nothing to knowing almost too much during the time from Nipper's preliminary diagnosis in June 2010 to his discharge from the Paediatrician a couple of weeks ago.


For any readers who don't have the time or inclination to read the whole blog post detailing what's been going on, here is Nipper's diagnosis:


Nipper has a language processing problem and so whilst it was initially thought that he had Asperger's Syndrome, this is no longer the case. He has some traits of Asperger's but the language issues put him further along the spectrum with a diagnosis of Autistic Spectrum Disorder instead.  Occupational Therapy have diagnosed him with Sensory Processing Disorder and aspects of Developmental Co-ordination Disorder. He's affected across all of his senses but particulary in the gustatory and proprioceptive areas. These problems lead to sensory seeking behaviour and so he perhaps hasn't got ADHD after all, we'll have to see on that one.

The photo above shows the pile of 'stuff' that we have been given to read/implement, etc and includes 'support' information, speech and language therapy, social communication, visual scheduling, social stories, sensory/occupational therapies, DLA paperwork, and the file of all the medical reports and forms we've had to fill in. I've included the photo of Nipper because our life seems to be dominated by this pile of 'stuff' and trying to implement it all, but at the end of the day, under several layers of disability is my little boy, and what a confusing world it must be for him, never mind for us!

So, here's the nitty-gritty for anyone who wants a bit more detail:

Developmental Check

In December we went to Paediatrics for a follow-up appointment but at that point there was nothing to follow-up as Nipper hadn't yet had his diagnostic assessment. I wondered about cancelling it but we decided to go along anyway. It turned out to be quite a useful visit after all.
The doctor couldn't review Nipper's notes as the hospital file had gone missing(!) and so he decided to do a developmental check as one hadn't been done yet. At the time Nipper was 54 months old (the developmental skills check ran in 6 monthly increments). The assessment showed that his locomotor skills were at the level of a 24 month old; his speech and language, interactive, social and self-care skills were at the level of a 30 month old; and his manipulative, visual, hearing and language, and cognitive skills were at the level of a 48 month old. At the end of the appointment the doctor rang the person dealing with the diagnostic assessment waiting-list and made a bit of a fuss about the fact that Nipper was still waiting for an appointment. By the time we got home there was a message on our answering machine with a proposed appointment date!

Speech Therapy

We have had a few meetings with a speech therapist and found out that Nipper has a language processing problem.
We know that Nipper often has trouble in understanding what is being said to him, he'll start a sentance on one subject and finish it on something completely different, he'll respond to a question with an answer that has nothing to do with what you were asking, and his sentances often don't make sense. He'll babble in the middle of a sentance as he wants to chat but can't find the language to do so, and it's almost impossible to get information out of him.
When the therapist assessed him she found that his speech sounds are fine, his attention and listening skills are immature for his age, and his play skills, social interaction skills, expressive language skills and his understanding of language all need further assessment. He understands words and he understands grammar but he struggles with verbal reasoning and inferencing. He is getting to grips with 'why' questions but struggles with 'how' and 'when' questions and does not ask 'how', 'why', or 'when'.
We now have to attempt to do some play therapy with his favourite toys (that'll be Thomas the Tank Engine then!) and incorporate these questions. It's very difficult to do when you have to specifically target something like this!
We are also using visual scheduling and prompting to back up what we are saying to him and also to give him a sense of what's happening and when. I've also put together some visual reminder sheets for use at school and also to help him to use the toilet. I need to do a lot more of these.
I'm supposed to be writing our own targeted social stories for him but I haven't been able to do this yet. I have got a book all about it though so I'm partway there!

The Diagnostic Assessment

This comprised of a couple of hours of us talking with the Paediatric Consultant whilst the Speech and Language Consultant assessed Nipper's social skills. Considering this was the 'be all and end all' appointment that we've been waiting so long for there isn't much to say really. The Paediatrician had all the previous reports, which she had been through, plus several questionnaires which we and the school had completed. We were asked lots of questions about all manner of things (development so far, behaviour, interaction, play, eating, sleeping).
The Speech and Language Consultant reported that Nipper clearly displays 'the triad of impairments'. I generally struggled to understand this 'triad' but I get it now that it's in the context of Nipper's behaviour.
His use of eye contact and social language is weaker than expected for a child of his age. He's repetitive in his use of language and not able to set the scene. His interaction was inconsistent and he ignored her a lot seemingly not motivated to respond. When he did join in he was quite bossy and wanted her to do as he said. She gave him opportunities to maintain a conversation but he didn't ask any questions about her thoughts or experiences and kept changing the subject back to what he wanted to talk about. He wasn't remotely wary of this new situation he found himself in. He was interested in imaginitive play but it had to be led by her and he was rigid in his behaviour.
The summary of the whole report, which is the most important thing I guess in terms of 'proving' that your child has a condition, was just 5 simple lines with the conclusion of Autistic Spectrum Disorder and a comment that all of the difficulties displayed during the assessment were likely to be magnified in other settings such as home and school.

Occupational Therapy

Seeing the OT has been really helpful as a lot of Nipper's behaviour stems from sensory problems. He's affected across all of his senses to a greater or lesser degree and as these issues affect him on a daily basis he's classed as having Sensory Processing Disorder.
Nipper was 'on the go' the whole time he was being assessed and the OT (as well as the paediatrician) suggested getting him tested for ADHD when he's 6 years old. It was difficult for her to get him to follow the tasks she set because he was so inattentive and dashing about trying out all the equipment.
His movement and co-ordination assessment showed that his ball skills were at the level of a motor difficulty, his static and dynamic balance was just above the level of a motor difficulty, and his manual dexterity was ok. So, overall this assessment puts him at just above the level of a motor difficulty. The test for visual and motor integration showed him at the level of the 'average' child so that was good. He has issues with tactile defensiveness, weak muscle tone, taste/smell sensitivity, auditory filtering, auditory/visual sensitivity, and is under-sensitive and so seeks sensation.
When we got the OT's report she concluded that Nipper had sensory processing difficulties which were contributing to sensory seeking behaviour and reduced attention span. There were two pages of advice/exercises specific to Nipper, 8 pages of more general exercises, and 2 booklets on SPD. We're going to be very busy putting all of this into practice!


Added to the above I've met the recently appointed Autism Support Worker for our borough and had some helpful advice from her; successfully challenged a DLA refusal with the help of the local autistic society; met the ASD advisory teachers for our borough and am trying to get them to do a classroom assessment for Nipper but as he's in a small private school this is going to be difficult (we will be paying for the assessment); signed up with a family worker in an attempt to get help and information, hence the possible assessment by the ASD advisory teachers; joined a couple of local support groups for parents of kids with additional needs; attended a 'training course' on parenting a child with special needs; attended a couple of special needs forums; attended a really useful talk about Sensory Processing Disorder, and will shortly be doing a bit of helping out for our local Autistic Society.

I think it's a good job that I'm a stay-at-home-mum!

P.S. As and when I get the time I will blog the information/advice that I have picked up so far as it may well be of help to anyone else with a nipper like Nipper.

From Nothing To Almost Too Much

Light at the End of the Tunnel?

It seems that there might finally be a light at the end of our 'referral tunnel', though I'm hesitant to hold my breath about it!

I've spent I don't know how many weeks phoning the locum paediatrician's secretary to chase up Nipper's referral for the full on diagnostic assessment, being told that the replacement paediatrician will call me, nobody calls, and I ring the secretary again. This happened numerous times and each time I was given the name of a different paediatrician until in the end I asked for the details of who I needed to write to in terms of a complaint. This prompted a phonecall from the administrative manager of the paediatrics department. She was very helpful and called my GP to request that she writes a referral letter back to the paediatrics dept so that Nipper will be seen within the NHS target of 18 weeks. I really don't see why this rigmarole is necessary. Why couldn't the locum have just told my GP the same thing back in June, and why are there two systems for referrals (one from paediatricians with no target attached, and one from GP's)?

During the conversation with the admin manager I asked if she could pass along the sensory checklist which I'd sent in so that we could get on the occupational therapy waiting list, which I know has a wait of over one year. She initially said to speak to the doctors when Nipper has the diagnostic assessment but I got a bit pushy about it and so she said she'd see what could be done. I don't want to wait another 4 or 5 months before the checklist is put forward! Better to get on the waiting list and then cancel if it's not necessary. As it happens I got a copy letter from another paediatrician asking OT to put Nipper on their list so clearly he has enough sensory issues to warrant an assessment. However, I then got a letter from OT saying that only one assessment/advice appointment will be available due to the number of referrals they are getting. How crap is that? What happens if you need a follow-up?

So, the call was made to my GP on the 9th September and at the end of September I rang the GP to check what was happening. Apparently the referral letter was in the process of being typed. For goodness sake - how long does it take for a letter to be dictated and typed - 3 weeks it seems! I keep checking the mail to see if we've got an appointment for the diagnostic assessment but nothing so far. I think I'm going to have to start ringing paediatrics all over again.

It's now over 4 months since Nipper had his initial assessment and it's a bloody good job that I'm not holding my breath!

P.S. I managed to get my DLA form sorted and sent off - kind of depressing though isn't it, spending all that time thinking of all the difficult stuff you have to deal with day after day? I had a few low days with it but it's done now. And I remembered to photocopy it before it went in the post. Thanks for all the tips that were left in the comments on my last post.

Light at the End of the Tunnel?

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!

Here's Where We're At