27 March 2011

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.



  1. Just wanted to say hello and I sympathise with you... we have a 3 nearly 4 year old girl diagnosed with ASD and I so know what you mean about information overload.... sometimes I just see the in-tray pile up so high it's scary. Have no idea how any mums go back to work, but particularly those with special needs children. And like for us, it's that bit more scary when it's borderline, and the sensory issues are so difficult to understand; it's all a minefield! Sounds like you have lots of professionals onboard though, so I hope they are helpful to you.

  2. Gosh, my head feels dizzy just reading all of that! However, at least you know what is going on now, and are no longer in the dark. Thinking of you. Hugs xx

  3. I found your blog via BMB and just wanted to say hello. I have a 12 year old with ASD and a 9 year old girl just diagnosed this week with aspergers. It sounds like you had a good assessment and done relatively young too which will hopefully help you in the future. Best wishes.

  4. Goodness, you've got your hands full. I coach at a swimming club and we have two sisters swimming (8 & 10 I think) with quite serious DCD and lots of associated problems. We and they have had to perservere - repetition, repetition repetition I think, plus going in the water with them and moving their arms and legs in the right pattern, plus coping with lack of concentration - but it's been so worthwhile to see their progress. Their OT has been up to see what they're doing and has been hugely impressed with what they're managing to do. Their coordination has imporved enormously. And they've swum in a few galas and have done very well. It might be worth thinking about once nipper is old enough, and if there is a sympathetic group in you area.

  5. You're right Blogger did eat my comment. So I'll try again.

    Your story takes me right back to when Boy One was younger and trying to get diagnoses and on to the lists of people who can help. It all seems like such a long time ago.

    From this distance I'd say the explicit diagnosis doesn't make that much difference as long as you get help. So if the OTs want a kid with, say, dispraxia then give them one, if the speech therapists one one with comms trouble then, well, you know. Each department and expert has something to offer even though it seems they have different ways for you to qualify for their help.

    I found the National Autisic Society's course very helpful. I think it was called Help!. They assist in unravelling.

    The DLA forms are a total bitch. Someone once advised me to tell the story of the worst hour of the worst day of a bad week when you fill them in. Not untrue, just bleak.

    If it's any comfort, this phase does pass and now I'm trying to make sure my boy has help going up to high school!

  6. Wow, so much has happened, hope you're feeling okay about it all. It sounds like a lot to take in. But it is good that you are getting support and have a programme to work with him that should help.


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