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?

From Pillar to Post

I'm hopeful that at some point I'll be able to write a blog post where things are progessing but it won't be this one. I'm really getting the run around and getting pretty fed up with it.

I got a letter from Paediatrics telling me that Nipper had an appointment. Great, it must be the language assessment. However, the letter wasn't clear and the appointment wasn't until December - rather a long time to wait for an assessment. So I rang up to check it out and ask how come we had to wait so long (7 months from when we saw the Paediatrician).

That's when I hit the first problem. The phone number on the letter isn't actually the department who sent it so the person I'm talking to can't help. She's very helpful though and says she needs to speak to her colleague and someone will ring me back. Two days later I get a phone call and a different women explains that the reason we have to wait so long is because that's what the Paediatrician wanted. I'm thoroughly confused and after a bit of questioning it turns out that this is not our diagnostic assessment after all but the follow-up appoint for when we have had all the necessary assessments.

So, what's happening with the diagnostic language assessment appointment then? The person I'm talking to can't help with that but gives me a phone number, which is the number of the colleague who needed to be consulted two days ago. It's only 3:30pm but apparently there's no point in ringing as there wouldn't be anyone there. So I ring the next morning, and I get an answering machine, and I leave a message. Two days on and I havent had a reply so I ring back on the number on my original letter again. 'Barbara' (whose answering machine it was) is on holiday. The person I'm speaking to can't access the system so will try to look into it and ring me back. Later that day a different person rings me up as they want to be sure of who I am and check Nipper's details. This person knows that we saw the Paediatrician back in May but can't confirm for certain whether a referral has been made for Nipper to have the diagnostic assessment and the locum Paediatrician we saw has now left. ('Barbara' appears to be the only person who can access the system - lets hope she doesn't get hit by a bus!) It seems that there are two referral systems in place - one for Paediatricians and one for GP referrals. If you are referred by your GP you will be seen within 18 weeks to meet NHS targets. If you are referred by the Paediatrician then you have to wait for a space in the list of people referred by GP's as no targets are in place for Paediatricians. So, in order to be sure that Nipper gets seen soon-ish I'm supposed to go back to my GP and ask her to write a letter. The Paediatrician sent me back to the GP back in May and she threw a hissy fit and told me it wasn't her remit to deal with Nipper any more and his care was down to the Paediatrician.

Added to this ridiculous mess is my ineffective attempt to get an Ed Psych referral. We had a meeting with the nursery and SENCO about this ages ago and the SENCO was supposed to be checking to see if Nipper was on the list already and if not then putting his name forward. I also chased it up with the nursery after the GP confirmed that the Paediatrician definitely wanted this referral. We haven't heard anything despite me chasing it up again and Mr Earplugs (hubby) leaving a message on the SENCO's mobile. Yesterday I bumped into the SENCO at nursery when I arrived to collect Nipper. She said she couldn't get hold of Mr Earplugs (even though he had given her 2 different phone numbers to get him on!) and when I queried the Ed Psych referral she said my GP needed to do it. For goodness sake!! I'd already told her that the GP won't do any referrals and that it was the GP who told me to ask her. So now, about 2 months after I first asked, she said she will speak to her boss about bypassing the system - whatever the system is - and getting Nipper's name on the Ed Psych list.

It's three months since we saw the Paediatrician and we are getting nowhere fast. I wish I knew how we are supposed to get the referrals we need because at the moment everyone just keeps saying that it's someone elses responsibility and we don't know if anything is actually being taken forward. It's stressful enough dealing with Nipper's problems without having this hassle as well!






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From Pillar to Post

Round and Round

We seem to have been going round in circles over the last couple of weeks. Armed with the Paediatrician's report, and as per his instructions, we went to see our GP to ask for an ADHD referral. The GP was less than amused! She said that since Nipper's issues were behavioural and not medical it was no longer within her remit and the Paediatrician should now be looking after Nipper. Apparently the Paediatrician's report left a lot to be desired and wasn't specific enough nor did it clearly state who should be doing what next. So the GP will write to the Paediatrician and politely point this out and we will have to wait to see what happens and where we go next.

We had our meeting with the SENCO (who you might remember I was very annoyed at!) I figured I had better keep my annoyance to myself since we are likely to need her help in the future. She went through her observations and said that Nipper had come on some since she first met him. She ran through a few things that we could do at home - working on his pincer grip as he can't hold a pencil nor can he write his name; playing simple games which involve turn-taking, and setting an egg-timer so he gets the hang of beginning and finishing a task within a certain timescale. Apparently she shares an office with the person who administers the Educational Psychologist referrals and was going to check if Nipper is on the list - I don't see how he can be as no one has referred him to my knowledge, even though the Paediatrician thinks he's going to be getting an Ed Psych report! She said she would let me know about this but the only contact I've had since is her asking me how we got on at the GP's. So that's another thing that I'll have to chase up.

On a much better note, I had a letter from Speech Therapy saying that Nipper was at the top of the list for an appointment so we're off for that in a couple of weeks. No mention of the Diagnostic Language assessment and Speech Therapy said that it's not their department so I need to follow that up too. I had a good chat to the principal therapist and she very kindly emailed me some information regarding who I would need to speak to in order to get certain referrals as apparently though the Paediatrician is now in charge of Nipper's care he won't necessarily be the one doing the referrals. Confusing isn't it? If the Paediatrician doesn't refer and the GP doesn't get involved then who sorts it out?? Anyway, it seems that we really need an Ed Psych assessment, the Diagnostic Language assessment and probably a Sensory assessment by Occupational Therapy. Nipper can't be assessed for ADHD until he's 6 years old so it's odd that the Paediatrician told us to go to the GP as a matter of urgency and ask for a referral!

We're off on our hols to Devon next week so perhaps we'll know a bit more when we get back.

Round and Round

Hurdles Already??

When we saw the paediatrician (see previous post) he told us to get a copy of the SENCO's report as soon as possible so that we could put it together with his report and go see the Doctor and ask for an ADHD referral. So when I collected Nipper from Nursery I asked the manager if she could put this request forward for us. I was rather surprised and dismayed at the reply - the SENCO said that she doesn't write a report and therefore there isn't one for us to have. How can that be possible? This person goes into nursery and observes my child and then makes recommendations - how can she not be writing a report? Surely she must put something down on paper and could therefore have let us have a copy. But it's not going to happen!

Since Nipper's visit to the Paediatrician I've been trawling the internet for information about Asperger's and ASD's. I've come across a lot of people reporting how difficult it is to get the help that their child needs. I have to admit I'm a natural pessimist but I was hopeful that now we know what's going on with Nipper that we could move forward. I wasn't expecting a hurdle quite so soon. We are due to see the Doctor with the Paediatrician's report and the non-existent SENCO report and I'm wondering what's going to go awry there now.

We are meeting the SENCO tomorrow so I shall be asking how she communicates her observations and recommendations given that she apparently doesn't write!

Hurdles Already??