Thursday, June 10, 2010

The big meeting (game)

We had our big meeting at Elizabeth's new school today. The meeting is to present Elizabeth's needs to the school where she will attend Senior Kindergarten, this is to let (or warn) the school what they need to prepare for the fall. Our biggest concerns are concerning; safety (during gym time, outside and in the halls), her needing assistance for changing her shoes and putting on her coat etc, a suitable/supportive chair for the classroom is available, having an FM unit available for her, the Itinerant for the Deaf assess her classroom and to provide support, having PT and OT consult and set the environment up for her needs and to ensure she is included in all activities to the best of her ability, equipping the bathroom for her independence (versa frame or grab bar) and ensuring her speech therapy is to continue.
We were lucky to have some of her therapists/teachers present at the meeting as they know her so well and are instrumental with the successes she has made. Her PT made it as apparent as she could that Elizabeth was not safe and requires close monitoring and equipment to maximize her potential but she is not able to outright say what she should receive (restrictions made by the organization CCAC that assesses her need for OT/PT). Her Speech Path on the other hand laid it out that Elizabeth has a moderate speech delay and should be getting the max 24 sessions.
The school staff that were present listened with interest and during the meeting seemed genuinely concerned with her needs and as they had met her they agreed with some of our concerns. Unfortunately the CCAC manager did not show up to the meeting as planned.
I thought things had gone well with the meeting until I asked when would we be hearing what services Elizabeth would be entitled to in the fall. Of course things became quiet and they said they would wait until the fall to put the paper work in for requests for service but she would recieve Speech therapy as requested by her SLP. I politely said I don't think this is the normal routine (I work for one of the agencies and know a bit more than the average parent)and will look into it tomorrow.
So tomorrow I will make some phone calls to find out the process and ensure things are ready the day she walks into her classroom. Waiting for the fall will not be an option. I am fairly aware that fall means maybe an October visit and then another month to order her chair and before we know it Christmas will come and she still will not have a chair. As for safety she is not safe at certain times and has to have support available when needed. I really hate playing this game, I try so hard to be nice and trusting and not get their backs up but now I have to be the pushy parent to get what she needs.


Janet "Grammy" Harrold said...

Good for you! it's unfortunate that the schools just don't get it and we have to fight and push for almost everything needed! I just stumbled on your blog and will continue to follow it. My name is Janet and my granddaughter Hailey has Athetoid C.P. feel free to wander on over to my blog to follow Hailey's progress.

Anonymous said...

How dissatisfying! (understatement)


abby said...

And yet how typical...The really sad thing is that only squeaky wheels appear to get greased (and usually not without stepping up the squeakiness, either) and that schools appear to function on the premise that most parents don't know the law/what their kids' rights are/what their kids need and so schools (or at least gatekeepers in school districts) just take advantage of them.

Anyway, good luck with this. It does help to know the system/whom to call and stressing the safety issue (=if something happens we will litigate) might really help.

Candace said...

Oh man, sounds like you are gearing up for a battle. Although, i hope it doesn't turn out that way! You will get on them and hopefully they will respond appropriately.

Sherry C said...

oh I'm thinking of you.. my girls school's PT/OT and Speech have been wonderfully helpful. I hope you encounter the same kind of support staff. I'm battling to keep Ashley EA for next year right now. I've never made so many phone calls I've called everyone from the CUPE president, Superintendent, Director of Education and the School Board Trustee.. and I'm hopefully they will do what is best for my child. I'm really making a fuss.

Anonymous said...

Waiting for the fall is not standard routine. We started meeting with the school in Febuary for the following September (my daughter was at a CTC intensive preschool program)she is much like elizabeth physically walks uniaded most of the time but is unsteady with diplegic CP. She has evrything there for the the 1st day of school, rifton chair, columbia toilet system and a kaye bench. I would definately look into their decision.

Unknown said...

Playground time is a big concern for me with Kellar as well, he still doesn't have that "fear" of some things and trusting him to be looked after by someone else makes me very uneasy! I read from top to here and noticed that she's using her chair more now when her legs get tired, Kellar gets very restless and moves his legs alot sometimes during sleep and I'm thinking he's played hard and his legs must be aching. Around here we don't have much available as far as for kids with special needs, I find myself in awe reading blogs and seeing the school options that some have, Kellar did test and they want to mainstream him I'm very thankful he's progressed so well... Ok I'm fixing to watch the video of the new trike!!!