It has been a very odd few weeks. Odd in a good way.
We had a meeting with the LEA which did not seem promising with regards to Nate's schooling.
The medical advice to statement was very umm "gentle" - no mention of nasty pickles he can get himself into. No mention of being life threatened and probably life limited. The advice was written by the local paed with no input from the main hospital ( another area) who deal with him and know him best. So all in all not very helpful when you are trying to convince the LEA to pay for and send your child to a school specializing in PMLD and complex health needs ( out of area) which has a nurse and chest Physio. I was quite cross.
The result of being cross and asking people locally "when did my child get fixed? and why did no one mention it?" was a very quick appt with his paed. In said appt the paed stated she felt he had a "brighter future" after talking to his neuro. Brilliant. Utterly brilliant in fact, but also slightly suspicious. It's hard to describe being told something so positive, but wondering at the motives behind dropping that comment into a conversation that involved the drs incomprehension atwhy I felt this particular school was the right one for Nate. I still can't understand why they thought he would be safe in a school without a nurse.
In addition apparently the seizurey episodes he has had recently probably aren't seizures as those type are incredibly rare ( um this is Nate we are talking about). As he's stayed out of hospital this winter ( 1 winter) "he's probably not that life threatened anymore" (utterly brilliant to hear but again slightly suspicious). Nate's lack of diagnosis meant she couldnt comment on his life expectany (fair enough) and felt he was a lot safer than he used to be. Well yes that is true but only because of the immense effort made my myself and his dad to keep him well, monitor him, and take action quickly. At the very least I expected his health advice to reflect the amount of care he would require to stop him turning blue not a statement of " people involved with Nate will need CPR training" Oh and she felt there was no real point testing for a previously mentioned syndrome (it was felt he was unlikely to have this one at the time having no seizures or stomach problems) even though he has stomach problems and possible seizures now....because a diagnosis wouldn't help......
Hmmm all stunk a bit of "playing things down" to send him to the local school and saving money ( in my opinion)
BUT the next day we had confirmation they WOULD send him out of area. Fabulous. Good sense prevails! Or certainly a more accurate description of Nate's care needs and how quickly his health can deteriorate must have appeared! I am still afraid to accept the positive statements made in the appointment because of the context of the conversation we were having. It all felt like justification for not putting money towards the education Nate needs rather that an updated view on Nate ( I had just seen her 2 months earlier).