DD starting public school in the fall, not sure what to expect

[NiteNicole]

I register her next week and I am literally feeling nauseated about it, she is super super excited.  She gets to go with us to registration and she can not WAIT.  We're told that this is a good school and that they work really hard to accommodate special needs.  I am taking all her records but I have no idea what to take about her special need. 

She has a not very well defined neurological issue that mostly impact her right leg.  On a bad day, she has a slight tremor in her hands.  If she's sick or tired, her hands are worse and her ability to walk really deteriorates.  She has not been able to run in about a year and a half (she did run SOME around Christmas of 2010, but she started to go downhill just after that and has not yet had a full recovery).  She has had periods of walking just perfectly fine for weeks and as much as two months, but then so far this year she's not had a single normal day.  She uses a walker a lot.  We don't have PT or OT for her because our insurance doesn't cover then and we can't afford it, to be honest.  We've turned our lives upside down (sold our house, moved away from family) to get in this school district.

What can I expect?  What should I ask?  What specific info will they need?  Do I need letters from her ped or neuro?  Should I just bring this all up when we register or call ahead?  I have NO CLUE where to start or what to expect.  All my friend's kids are in private school and totally typical.  I don't know anyone in real life who has a kid in public school or with special needs.  I have no one to ask.

Honestly, I feel like when your kid is found to have an issue, you should be assigned a case worker who says ok, here is what you can do.  Here are the programs you qualify for (so far for us, NONE.  Everything is income based and while we have cut our expenses down to the bare bone  minimum, we still are just going month to  month at the moment.  My husband changed his job just before this all started happening with our daughter so now we have both crappy private insurance and 1/3 the income we had before), here is who you should call, this is what's going on.  I am totally flying blind.

ANY advice?

[oaktreemama]

Here we have several county based organizations that assist families. While the financial assistance is income based, information and other forms of assistance are available to all. Did your neuro have any advice? Ours actually steered us to our current organization and ensured our paper work (we get some help with co-pays for therapy) was filled out properly and mailed to the correct people. Contact the school district.

Look at the local cerebral palsy group-for sure those folks will have local contacts who can assist you.

When we applied for assistance they assigned a case worker to us, I would assume that is somewhat the norm.

I also keep a folder and keep all my son's medical records and treatments in it. Every appt we go to I get a detailed typed out record of what was said and done. That way, when we enter school I will have all kinds of documentation. I would call the neuro office and get his medical records mailed to you so you have them. Same with the ped. It is also worth checking with the ped as s/he may have all the records. Our neuro copies our ped when he sends the appt notes to us.

[NiteNicole]

Thanks!

Neither our neuro nor our ped have had any advice, but part of this is that we live in one parish, see a nuro in another, and then a ped in a third.  Totally separate school districts, obviously - one is an hour away, the other is two hours.

[Emmeline II]

It seems that she should have a 504. A 504 is helping your child get the same education that everyone else is getting--more for a student that needs accommodations to help them learn (like sitting next to the teacher) or for behavior, and that they are not punished for things that they cannot control due to their medical condition (like not participating in PE).

Key Differences Between Section 504, the ADA, and the IDEA. (http://www.wrightslaw.com/info/sec504.summ.rights.htm)

I took my son's diagnosis to his 504 meeting and I already had an idea of what accommodations he might need and since he had been in school two weeks his teacher had ideas as well. You could ask her doctor's what accommodations they think she might need. There is a sample plan below that may give you ideas.

• Download the Model 504 Plan as a PDF
• Download the Model 504 Plan as a Word document

[NiteNicole]

Thank you SO MUCH!!!

[LynnS6]

The Wright's Law.com site has a lot of really good information.

I would also ask the school district to do some basic school readiness testing to make sure that her neurological issues aren't affecting developing/learning. She might be able to get OT/PT through the school, especially if it's affecting her hands (because that will affect writing). They'll have to make some sort of accommodation for her walker. What about transportation?

Most school districts have an office that deals with 504 plans and IEPs -- I would call them now. (I found ours for our school district by going to their website and searching for Special Education.) They're much happier having more time to get supports in place, and if they don't know about her issues now, it'll take a few months for the paperwork, etc. to be worked out. (And you want to get it started before school lets out.)

Finally, don't worry too much. Your daughter is excited - share her joy!

[NiteNicole]

Thanks again.

As for transportation, I'm a SAHM and I don't mind doing drop off/pick up.  There's a bus that picks up on our street (and the driver picks up the little ones in their driveways, he does not like for them to wait at the stop) but I don't mind dropping her off because it's like ten  minutes away but the bus adds another 35  - 45 minutes in the morning AND afternoon and that seems like a lot to me.

I'll look into everything else.  I HOPE that once she's recovered from the recent round of ear infections (which make things worse and last time went on for months) and gets her stamina back, she'll be back to walking normally but the fact is...we just don't know.  Sometimes she's fine, sometimes she's not. 

I'm really really worried that people don't get that it's a REAL issue that can be quite profound and the situation can change rapidly.  She can be fine for weeks, then start stumbling one afternoon and then the next day she has to rely heavily on the walker.  I have a big fear that people will think she's faking or, or that we're making it out to be worse than it is.  When you see her and she is walking so normally, I know it's hard to believe that it could be a whole different situation tomorrow but that's our reality.

[elmh23]

I'd call the school tomorrow and ask who you need to talk to to get your child evaluated for next year so you have a 504 plan in place at the start.  Ask for a PT eval and OT eval especially.  Chances are she'll qualify for OT based on the issue with her hands.

[Linda on the move]

Originally Posted by elmh23 

I'd call the school tomorrow and ask who you need to talk to to get your child evaluated for next year so you have a 504 plan in place at the start.  Ask for a PT eval and OT eval especially.  Chances are she'll qualify for OT based on the issue with her hands.

I'd request things in writing -- real letters with signatures and dates, and keep copies. I'd also attache a letter from one of her doctors stating her dx.

Where we live, the DES office has special case workers who help families with special needs kids access services.

And I agree that she may qualify for some PT through the school. It can take a while to get everything in place. I'd aim for basic accommodations so she can get through the day by the first day of school, but continue to advocate for services like PT.

Also, there are usually some work days for teachers before school starts. You might see if the school is open to you guys popping in to meet the teacher informally so you can give the teacher a heads up.

As far as the "sometimes she seems normal, and sometimes she's really struggling thing,"  I totally get that. My DD is on the autism spectrum, but has gone through periods when she seems fairly normal. then she falls apart in huge ways. It's weird. She gone to both public school and private school, and we've had GREAT experiences both places. We've consistantly dealt with teachers and administration that want to help her be successful. Stay positive!!! 

[NiteNicole]

We called this morning and they said they do evaluations the first weeks of school (which is before kindergarten actually starts, they start later).  There is a day where all the kids go and meet the teacher, the parents meet the teacher and do some paper work, and some standard evals are done.  At the same time, we will set up her other evaluations and give them info from her doctors - we'll talk about which info tomorrow.

Thanks for all the info, I'm following the links and keeping notes!  Thank goodness for other moms who have BTDT!!!