Fight for stimulation and socialization

Tomorrow is our final assessment meeting with the school district.   It is the psychological evaluation, and well, I really think it is just going to be me talking about Hannah again with Hannah just being her cute adorable self.

I have been starting the conversations with quite a few important people this past week about what we need to do to get the school district to consider allowing us to have a one-on-one nurse for Hannah in the school next fall.   There just HAS to be a way for them to consider this, and I am not going to give up searching for answers until there is nobody left to ask.

Daddy and I really feel strongly that Hannah could definitely benefit from the stimulation and socialization being in a classroom setting would bring.  She loves hearing music and being sung to.  She loves listening to stories and having books read to her.   She loves being around kids as they are playing around her.

Having Ethan and Abby at home these past two weeks really showed us a difference in her.   Part of her amazing positive progression these past couple of weeks I partly attribute to the kids because they are getting her motivate to move and to interact.

Being at home with a nurse during the day, doing the same things, must get boring for her too.   God knows I would be bored!

I also don’t want to be naive either.   I honestly don’t know what happens in a special ed early education class.  Maybe I have these visions that just aren’t reality?   I mean, I picture busyness, circle time, colorful room, singing songs, colors, etc., for 4 days a week, 2-1/2 hours a day.  If this is what it is, she would really thrive with that kind of stimulation for a couple of hours a day.   I even like the idea of perhaps keeping her out of school during flu season because she is prone to trachiitis but be able to be in classes otherwise — but at least give her that opportunity!

But safety is of number one importance.  I just don’t see how the school district can justify not having a one-on-one nurse for a trached child.   Forget the emergency aspect of it all (which is my big concern) — how does a teacher or assistant know how to suction a trach?  How would they deal with extra secretions?   A trach is an airway, and it is not as simple as just having anyone do it.

I am not going to give up on trying to give Hannah the best time possible while she is still with us.  Other people may write her off “on paper” for being medically fragile, but if her Daddy and I feel she is safe enough to go to school WITH a one-on-one nurse (whom we will provide at no cost to the school district), then that should say something.   And then, if it turns out that Hannah really doesn’t enjoy the atmosphere, then we will change everything back to home.

What I would really love to do is to be able to talk to one of the teachers who teach kids like Hannah here in the school district and get their opinions, insights, and experience on working with kids like Hannah.

I want to make the right decision for Hannah.  I know, that goes without saying.  But I don’t feel it is fair to deprive her of schooling and therapy that would benefit her because she is more fragile than the average child, especially when we would be providing the safety net so the teacher and school would not have to ever worry about that.

So far, the people we have met at the school district working on her evaluations have been really wonderful.   I understand that they are just relaying the rules.  But I just don’t think the rules are taking my child’s best interest into account, and I need the higher ups in the school district to realize that and give her a chance.   I need to collect all my information from her specialists, etc., and show them that giving Hannah at least a CHANCE to try this is what is fair.   If it doesn’t work out, then we all move on to home-based schooling and therapy.

I know many people will disagree with me, and well, unless they really know Hannah like we do, then all I have to say is that you have to trust us that we are making a decision that we feel is best for Hannah.

And yes, even if we do get her to school with one-on-one nursing, I will still be waiting outside the school the entire time.   What can I say, I’m a mom!