Alone in a group?

Have you ever felt completely alone despite the fact that you were in the middle of a group?  That's how I felt last night.  For the first time in weeks I had a night off.  My husband didn't have a rehearsal and was home with the boys.

I decided attend a parent support meeting for parents of special needs kids.  The meeting was organized by a local agency that supports a wide range of special needs kids.  I had learned in advance that part of the discussion would centre around mentoring.  Meeting information also indicated that the parents participating in the meeting would be grouped according to the age of their special needs child.  Last minute emails flying around yesterday stated that there was a major school board issue that needed discussion. 

When I first arrived there weren't many parents there but at the "teen tables" there were several local school board staff that I knew from long ago dealings with the school board.  It was rather disconcerting when I expected this to be a group for parents.

The meeting opened with everyone introducing themselves and explaining why they were there.  It became very clear that the focus of the group was going to be downs syndrome and autism.  Now  don't get me wrong I think that all parents of special needs kids need and deserve support but I really felt like a 5th wheel in the group.  The school issues really weren't my focus since we homeschool.  The planned discussion on mentoring was dropped like a hot potato in favour of school issues.

I was really hoping to find out more about how to find physical/medical support for my sons once they are 18 since their special services at home and medically fragile funding will disappear.  I guess that the government expects kids with physical disabilities to be magically cured when they turn 18.  The regulated health professional act prohibits anyone other that a doctor, delegated nurse or specially trained physical therapist from reducing dislocations.  Community care access can not provide any respite for us because their staff are not qualified.  I am at a loss when it comes to finding support for them to attend post secondardy education of any type. 

I actually had a staff from one agency suggest that they might be able to help but I would have to schedule all of their dislocations to happen between 9 and 10 each morning.  A typical day is at least 50 dislocations each per day.  These days it seems to be closer to 100/day each. 

Andrew hasn't been able to walk for the last 2 months and now the carpal bones in both hands dislocate with any wrist rotation or movement of the thumb or first 2 fingers on both hands.  He needs constant help with all ADL.

I guess that I'm just hitting the exhausted stage again and really needed somthing that can't be found.  Sleep would be a lovely idea too.Time to start digging deeper to find support services.

Falling back

The idea of an extra hour of sleep had a lot of appeal this week after fight ing a sinus infection and a lot of tmj pain.  Sadly, it wasn't meant to be.  Josh was having a rough night.  I stopped counting after he was up for about the 25th time.

Hopefully tonight we will get some sleep.