August 16, 2012 at 8:19 am #74511Statutory assessment
We are in the process of trying to get a statement for our son, who is 10. After lots of errors by the LEA we have finally got past the first hurdle and they have agreed to assess him.
My question is this – what should I be pushing for in terms of help?
My son has no learning difficulties but various physical. He will need to be in a wheelchair most of the time at school. He does not have a powered chair and so he will need someone to push it and help with bags. He also tires from writing so ideally he would touch type. I am not sure what else would help and don’t want to miss my chance. He suffers fatigue a LOT, at the end of the day he can’t sit up (and this is before all the increase in work and activity at secondary school) so, maybe something to help that?
Would it be advisable to get an independent private OT report done or hope the NHS one will be OK, his NHS OT is on long term sick so don’t know who will assess him when they have never met him?
So many questions as the only info I can find out there is about Aspergers or Autism and not physical.
AnnaZebadwParticipantPosts: 10Joined: 13/03/2012August 16, 2012 at 9:11 am #86255Re: Statutory assessment
Sorry you are having these problems and worry at the moment.
Getting correctly assessed with a rare condition is often very difficult. You say he
has a congenital nyopathy as yet not completely diagnosed. Many people on this forum
do not have a complete diagnosis so have been through some of these issues.
The important thing to keep stressing is that the liklehood is that the condition is progressive
and rare and that progressive fatigue through each and every day does happen. We have been celebrating that there
are now a few MD trained Physiothrapists. O.T. ‘s are getting better all the time as well
as their knowledge expands. If your OT is off sick it may give you a chance with any new #one to
get a fuller and more accurate assessment. I have had help from OT’s both at the hospital and the
local authority level. Maybe there is another one you could go to, or pay for private where you could
dictate that the correct iddues are addressed.
Problems with writing were the first thing that got me a mountain of help as it was such an obvious
problem. Since then I have been through Speech Recongnition software, voice ontrol, signature stamps and now
a whole range of different touch sceens. This aspect fills me with optimism and should solve
a lot of your sons problems.
Hope it goes well.
"Even if you are not paranoid, it does not mean they are not out to get you!".taungfoxParticipantPosts: 4,630Joined: 27/09/2010August 19, 2012 at 11:06 pm #86256Re: Statutory assessment
Hi, I really sympathise with you with the pressure of statutory assessment. I have a son who was diagnosed with md exactly a year ago today. I tried to get him assessed prior to starting school but failed as he hadn’t been diagnosed. It then took another year of a very tough fight to get exactly what I wanted for my son. The truth is, you are your childs voice and only you know him. Shout out all your concerns and keep on shouting until someone out there heres u. It’s hard work but it is well worth it as your child deserves nothing but the best. Does your child need daily physio? Perhaps you can get support for that :idea:anisakParticipantPosts: 12Joined: 15/07/2012August 20, 2012 at 12:37 pm #86257Re: Statutory assessment
Thank you both for your replies.
It is a very hard slog to try and get the help required for school. I am only just realising this! Our situation is even more complicated by the fact that our son is at an independent school at the moment. This means he is not on school action or school action plus, as they do not do these. He has no IEP and the school has never done a statement before. The school have tried to help but it is time to move on and so we are removing him from there to go to a mainstream secondary next year. As you can imagine, this has confused the LEA no end! They threw our initial request out at first as he wasn’t registered SEN until they eventually realised he wouldn’t be.
However, his current school has been very helpful, as only a truly small school can be, they moved all classrooms round every year so that he stayed on the ground floor (no lifts) and all his teachers come to him rather than other way round. This has been great but I am now realising that there could be so much more, they just didn’t want to acknowledge other difficulties!
The assessment is on hold until the school term starts now and then it all kicks off again. I get the feeling this could be a very stressful year!ZebadwParticipantPosts: 10Joined: 13/03/2012January 5, 2013 at 10:18 am #86258Re: Statutory assessment
Hi dudes …. to me unfortunately, I am now very nervous. I have 2 other children to get to school and if both the schools in our area refuse our son, I could be in a nightmare situation as the only other schools are in different towns and are not particularly good. Oh well, could be a moot point if he doesn’t get a statement, although I wonder who will push his wheelchair without 1 to 1 help (no power wheelchair, don’t even get me started on that nightmare.bella9091ParticipantPosts: 1Joined: 05/01/2013
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