We were again given the run around about P going to headstart. They said she is cognitively fine and the federal regulations don't allow for her to take the spot of a low income child. Also found out that her neurotypical peer spot (that was in writing) was given to a low income child last year as well. Super awesome. I am so scared that when she has a full 8 hour day she is going to crash and burn from stamina issues.
They also said her need for PT is medical related not educational. I don't understand this, if she can't walk properly it will affect her education. If she's in a wheelchair half the day, it will affect her education. They refuse to do psych evals on preschoolers and just did the basic child find developmental screening on her for ECSE for next year, which shocking, she again doesn't qualify for.
It's fed up that we have ONE preschool who will take her and it's 45mins in the opposite direction from everything else, so the amount of time she's spending in the car some days is outrageous. To get from there to home to VCU is over 2 hours.
I also have started thinking about what accommodations I will want for her in K. Other recs from fellow EDS moms were, extra set of books for home, elevator use, no contact sports, no PE at all, doing some oral work since hands tire out, water bottle & bathroom access at all times and recess based on temperature. So, the elementary school she will go to has an elevator but it's in a different building on the opposite end so, this won't be beneficial to her. I'm not sure how many books she will actually have in K but this is a good idea for her neck/shoulders. Ugh sports and PE, I will feel awful if I pull her from PE in general.
And, she's overweight so she needs as much exercise as she can physically tolerate. Is it acceptable to say she knows her limits, or X amount of time? I obviously need to get the PE itinerary, but this is stressing me out! She's already going to be 'different' and have a harder time fitting in, I feel like i'm only going to make it more obvious to the other kids. She needs the water bottle and unlimited bathroom for sure and she overheats easily so the temperature is one to think about.
Seriously, homeschooling is starting to look easier!
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned
DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3
Re: How DOES physical affect educational? (Auntie?)
He has a lot of walker goals this year (he also uses a wheelchair to get to/from the classroom but I have chosen no wheelchair goals as we will tackle that in private therapy). His walker goals consist of consistently getting from point A to point B (with point B getting further away/a longer distance) and going up and down ramps all with eventually getting to standby or less assistance. He has goals for falling safely (which he does not have protective reflexes so this will be a hard one to accomplish) but entering K for him means a much higher chance of falling and hurting himself. He also has goals for transitioning to/from various equipment and positions and sitting in a regular chair with the proper posture vs sitting in an adaptive chair (this is classroom goal only). He has various OT goals that deal with bilateral skills, cutting with scissors, potty training goals (more related to dressing/undressing and telling someone he has to go), etc.
As for DS2's school, the main entrance is not ADA compliant (only has stairs) but I have not harped on that yet since there are alternate entrances that are wheelchair friendly....it just takes a lot more time to get him into the school because I have to call the front desk to have someone meet us at a side door. Is there a way for P to get to where she needs to go? If not, my guess it they have to fix that or they may send her to a different school that is accessible for her. For PE, my guess is they would have to adapt it to her/offer Adaptive PE but I am guessing that starts in K and not the preschool.
I am not versed well enough in IDEA yet but I agree with Auntie that an advocate would be a good idea.
You will need to be specific in the IEP, if they ever let you have one, as to what the wheelchair is to be used for. The main reason I don't have any wheelchair goals in DS2's IEP is because I want the focus in school to be the walker. The wheelchair is really for transportation only. It is not to be used as a chair for any reason other then where sitting for awhile would be necessary (think a school rally which they wouldn't really be doing in K anyway). I digress....
Anything can be considered accessing the school environment IMO. The playground needs to be accessible to her as well. There is a section in our IEP that they like to mark no due to a preschoolers age but I had them change it to a yes (it was something about accessing extra curricular activities and non-academic activities - something like that). My argument was basically, Pre-K is in the public school system so he has to be allowed access to things the school does (think Breakfast with Santa type stuff, recess, etc.) regardless of age. Recess is considered non-academic.
I am so sorry that things are tough in regards to this. It shouldn't be so hard.
I have a question regarding this though: I spoke with the director in VA of ECSE and she agreed verbally that if she has no cognitive impairmentshe will not qualify for SN preschool.
So if they call themselves a SN preschool what does not having a cognitive impairment have to do anything given that IDEA has other categories that P would fall under for IDEA? It just seems to me that if they call themselves a SN preschool that they would be required to fall under IDEA. I have no idea how VA works though...but makes me not want to ever move there.