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I posted about not being happy w/ the IEP plan for Cooper. Well.. since, Cooper had his 3 year physical on Monday, the doctor said that Cooper wasn't ready at all. He also stated that he wasn't approving it & on the letter for the schools that are suppose to say "yes, this child can attend school, can participate in activities etc." he checked "no"... He told me that I needed to get a letter from one of his specialists stating that Cooper's needs are to remain in EI & not be in the school program yet. That their schedule is insane & not helpful, especially not assisting in his potty training.
So... I wrote an email to to head of the program, all she wrote back was "wow weeeee... I'll call you later"... I've yet to hear from her & Cooper "was" suppose to attend a 1 hour meeting today. I have no idea what is going on.
I got Cooper an apt' to see a new Neurologist at the Headache Clinic out of Children's for his seizures that aren't diagnosed on why or how to prevent. The apt is far out though, 2nd week of Sept. And that's just for a first patient consult. There will be no diagnosis made, no tests are going to be done, just a meet & greet, talking about history, and trying to make a plan moving forward to figure out what is wrong w/ Cooper that makes him have seizures.
Pre-K starts in Sept on the 9th, prior to this apt., I can't send him b/c of his medical needs & the pediatrician stating that he's not developmentally ready to attend. The only "yes" he gave Cooper was his immunizations were up to date & that he was eating well.
I am so confused. I tried to be the best advocate for Cooper when I sent the email, but I am unsure. I spoke to Cooper's EI therapists who "discharged" him on May 1st b/c he was turning 3 & she said "this isn't the IEP plan that you signed him up for, a half an hour on Mondays? & 1 hour on Wednesdays? and PT/OT & Speech is suppose to do it all in 1 hour? That's not possible & wont work." Exactly my point.
I don't want to lose the services from the State but obviously the State's "guidelines" for Cooper to go to school isn't going to "fit" in his medical needs at the present time.
Have you guys had to deal w/ this yet? What am I suppose to do now? I don't want to lose services but obviously his health comes first.
Oh, wow. I haven't dealt with this yet, but my heart dropped into my stomach when I read this. I have no idea what they do from here. I'm friends with our OT service coordinator. I could try to get in touch with her to ask what they do at their EI center in this case. I used to work in a Special Services Center, where we had kids from age 3-21 who were supposed to be in public school. They couldn't attend regular classes (like they seem to want Cooper to), so this center was the answer. It was where all of the Board of Education's "below baseline" kids went. It worked MIRACLES for some kids!!! Many were ready within a year to move into the situation they want for Cooper. BUT they definitely were NOT ready when they showed up. Is there anything like this in your county's board of ed? I know that they aren't everywhere. It may be worth talking with the school system to see if there's somewhere like this in another system. You can petition to let him go there. Just a thought, and you may have looked into it already.
I hope that EI gets back to you very soon. It's hard to be in limbo, I know. I'm so sorry that you're having to go through the hassle! DON'T think that you're anything less than an amazing advocate for your son! I'm so glad that you talked with your pediatrician about it! He confirmed your feeling on the whole thing. I just feel like there HAS to be a service available for Cooper that meets his needs without leaving him behind in one way or another.
(((HUGS))) I know that this weighs heavily on you. Let us know when EI calls back!!!
I haven't hear from EI yet but got an email from the special ed dpt & they asked me if I had the IEP plan in front of me, I do & gave them the data which was completely different than the schedule they gave me. I responded w/ what I had in front of me, and said I hadn't hear from EI yet. She said "I assume you wont be bringing Cooper here today?" well..duh... why would I? It's not healthy to bring him there, it's not the IEP plan & his pediatrician hasn't approved it. Why would I send him there against medical approval? I can't do that.
I am so tired. I feel like since Cooper's birth, I've been fighting. And so far, my fights have been worth it, this one is so darn frustrating & I want to get him the RIGHT treatment. That's all. My DH doesn't have to deal w/ this & last night I was trying to talk to him & have him read the emails that were exchanged & he had no interest. I mean, if I died tomorrow, he'd have NO CLUE... he HAS to be more involved in this. All he said is "Cooper obviously needs help"... okay, that was established at birth dum-dum... we know that, but what about this dilemma regarding the IEP program not working for Cooper? His seizures? Everything?
If you need to, call the IE program. Maybe they have a program outside of the school district for beyond 3 yrs. I know here we have Regional center and they have the IE program and then they have another program beyond IE.
Obviously the IEP the school gave is not going to work. Did the ped tell you why he felt Cooper should not be in the school though? Without that info, its really hard to know where to go next.
He had a ton of reasons why it wouldn't be okay. The main one was his seizures that are not diagnosed on how to treat, and many more, but the other that made no sense to him as a physician was a half an hour of PT & OT "together"...and then not helping continue to potty-train Cooper. He said it would be not only hurting my son's health, but a waste of time & not helpful period. He'd be better off having 1 PT session for 1 hour per week & work on that, then doing PT & OT at the same time. He said that it just didn't make sense to put Cooper & me through that. He said "this would be more of a playdate" for Cooper, not therapy.
I can't understand why no one has contacted you. I would think this would need taken care of soon.
We have a program/school for children once they reach 3 & then if they can go to the public school for kindergarten & beyond, they do. If not, he can stay at this school & progress at his own pace. Luke will get his therapy there once he is 3. I have had to coordinate all of Luke's therapy outside of the home. EI showed no initiative.....
Again, problems with people not listening to what Mom has to say.
Thanks Yvonne (Jaidynsmum) for my beautiful siggy!
For the record, today is Thursday...I have NO emails, NO phone calls, NO v/mails, nothing. I've sent 4 emails & I know they've gotten them. I just haven't gotten any response, including his "former" case manager from EI, which I left a v/mail on Tuesday for. WTH? I guess they REALLY don't care about my child what so ever, good to know that they do not value him, me or his medical needs for therapy. I am so irritated, more angry actually but if this is how they "run" their program, then I am glad my DS isn't going there. They don't seem to care.
I am so sorry you are going through this. While we haven't had to do this transition yet, I have had some problems with our regional center and I had to resort to backup up EVERY correspondence by certified mail. It was a big old pain, but it got my point across and they DID take me more serious.
I "FINALLY" got an email from the head of the Special Ed. coordinator yesterday. She said that she "fixed" the times b/c they weren't right. Then she said that she mailed me the IEP plan (because I don't have the IEP plan that we signed at the meeting) & she told me to decline on the IEP plan based on medical needs & include his pediatrician's letter that also declined his participation until the Neuro. has a way of making sure the Cooper has his medical needs taken care of.
Got the IEP in the mail Saturday. The frequency & allotted time is correct, but the dates do not match up & makes no sense. I consider myself to be intelligent but I didn't "get it"... DH had no clue, which I am not sure what that says but he's usually good w/ #'s & what not. I have to call them today, again.