I know, I know, there has been a huge gap since my last post – for those who follow anything on my blog then that doesn’t count as you saw a post only a little while ago, but for those who only want to read and relax in the knowledge that they aren’t alone with the stresses of special needs here’s another step forward.
I have many drafts still to complete from the last year but lets just jump straight to the front here, todays accomplishments!
NHS have kept us waiting for just over two years for an appointment for our son to be seen by an Autism and Sensory Processing Occupational Therapist. They are trained and experienced in ASD and therefore know what to look for and implement with regards to integration therapy for day-to-day school/home living. Due to the huge expense and lack of trained professionals the department that our son was referred to was closed and those waiting were placed on a back list. Well, you’ve guessed it, they have employed new staff and last week phoned to ask if they could come to our house and discuss the issues and our concerns.
I’m not going to lie, after waiting two years, the first appointment she read out was snapped up quicker than and toad catching a fly! Luckily that appointment was for the following Monday and with only a couple of days and the weekend to ponder, I had very little time to worry or think about things too much. Roz arrived bang on time and spent an hour and a half mainly listening to me telling her all about our sons sensory issues (sound, temperature, proprioception and vestibular… etc.), attention issues, and the new leg pains along with the general daily self-care skills. A few pages of note taking later she was able to give me a little confidence on the areas they can help with and things we might try while maybe referring him for Physiotherapy or a Podiatrist for the leg pains (that’s to be confirmed).
The next stage is for Roz to liaise with the school and arrange a suitable time to go in and watch him, speak with the staff and get a better picture of his school needs before coming back and looking at implementing a program for home/school.
You see, this makes me happy because I can implement strategies that they can supervise and ensure are correct without worrying that I’ve done it wrong. I can push for the support he needs and the best part is, I no longer have to feel guilty for stopping the private OT sessions that were too expensive for our newly one income family. I know eventually he’ll be discharged when we know how to do everything properly, but that’s better than having nothing in place at all.
Today, a weight has been lifted and although it’s a foggy and damp day, it’s brighter within.
On the 7th March, we went to see the Paediatrician for DSs six month review. We were in and out in less than fifteen minutes. Dr J asked how everything was going with our son, how he was getting on at school and whether he was getting consistent support. I told her about the Statement of Education he had received and the hours allocated to him but wasn’t sure at that stage if the support was consistent with one member of staff or being mixed as and when they were available. I was being told by the school SENCO that he was getting full support during class time, yet our son was telling me differently which I could not guarantee to be correct. Whilst talking ,Dr J was watching him interact with his Dad and checked to see how he responded to questions – she thought he had improved a great deal in his social interaction since our last visit. Personally, I didn’t think there was a great deal of difference in his reactions, although he did answer her question but then it had been almost a year since she last saw him.
I explained about the therapeutic listening 8 weeks block we had tried, that I hadn’t seen any significant change/difference in him and would wait another month or two before looking at trying another block of 8 (I will post separately about this). We also discussed his mild co-ordination issues and how that fell under the Dyspraxia umbrella; I had heard of co-morbid diagnosis with Autism and Dyspraxia but was unsure if this was normal – especially after reading the website for Dyspraxia that said an Autism diagnosis out rules the Dyspraxia and therefore shouldn’t be given! Dr J confirmed this by saying that while he had symptoms of Dyspraxia, as he had the diagnosis of Autism Spectrum Disorder, he would not receive a second diagnosis which would allow for extra Occupational/Physiotherapy, instead he wouldn’t receive any more support for this area of concern. We were told to check Dyspraxia websites for further help and activities that would aid our son and increase his coördination abilities.
Basically, if you have Autism you won’t get a separate diagnosis of Dyspraxia as most people with ASD have coördination problems as part of their Autism. They therefore already fall under a huge umbrella of need and as far as funding and support goes, they can’t afford to help your child with their coördination problems. However, if they were to diagnose you with Dyspraxia, they are more inclined to refer you to the OT. I believe this is different depending on the area you live in and the Doctor you see!?!
Other than that, Dr J was happy with his progress and sent out a review letter to our GP (General Practitioner) to confirm what I had expected a lot sooner – in six months time our son will be reviewed once more and assuming he will be making just as much progress, he will be discharged into the GP’s care. While I knew this was expected, it starts to hammer home, we are that much closer to being on our own!
Yes you’ve guessed it, I got our son’s OT report through the post today. I had to quickly read it, try to take a little in – then copy and add it to the rest of the paperwork for his Statutory Assessment request. As per last nights post, stayed up until late amending the question responses; today I copied everything, amended the OT details and this time got my husband to sign the sheets as well!
Anyhow, the OT report confirms that our son has various Sensory Processing Disorder issues and requires intervention, therapies, auditory integration etc. He has various proprioception and vestibular issues, posture problems; lots of little snippets to add to the big bits. To be honest, I thought the therapy advise was a little broad in information, but we have another 45 minutes with the OT to run through the report and maybe get a better understanding of the needs.
We then have to find some cash, work out what therapies we really need, want and start booking them up… seems like a few hours per week on various things over a course of 10 weeks – 2 years! I better win the Euro Millions tonight.