So we didn't sign the IEP.I don't want to get into too many specifics right now, but essentially the IEP confirmed the worse-case scenario I'd hoped we wouldn't get into. We disagreed on some very major points, points important enough that there was absolutely no way we'd be signing the IEP as it is written. Thus we will be going to another meeting in a couple of weeks, and depending on that meeting will be attending mediation and if that doesn't work out, going through due process.
I have to say that I'm really, really disappointed, and actually very angry as well. I had high hopes for this meeting. Connor turns three next week, and he won't be starting school because we couldn't come to an agreement. I'm absolutely not willing to forgo the services that I know Connor needs, and will do everything in my power to assure that he receives those services. All the same, it's very frustrating to know that I'll be starting a long, drawn out process that never should have happened in the first place, and in the meantime Connor will be waiting in limbo for us to hash it all out.
To add insult to injury, Connor's insurance just denied his prescription for Entereal Pediasure, as they say that the diagnoses of his genetic condition, growth restriction, GERD, and failure-to-thrive aren't reason enough to make supplementary feeding necessary. I spent the morning on the phone with the insurance company, and we'll be starting the appeals process with that whole mess, too.
Let's just say it hasn't been the best of days.
~Jess
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11 comments:
Hi. I am glad Connor is doing OK, and I am sorry for this. It is important for you to stick to your guns and get Connor what he deserves. I am feeling like you need to speak with an advocate. Do you have a social worker through any of your resources who might be able to lead you to one? Do you know other parents who have fought the IEP who could give you adivce, perhaps Connor's therapists know?
I hear you on the insurance company, but you can certainly fight them too, sometimes the squeaky wheel gets oiled.
Fighting all of these battles is draining, but hey, we do what we have to do for our kids.
Hug.
Thanks Ellen!
We are actually getting very good advice from a number of advocates for the Deaf and HoH-- they were present at his meeting and a huge help to us. We brought Connor's Deaf and HoH therapist, the head of his Deaf and HoH program, his Deaf Mentor, his special education teacher, and his physical therapist with us. The school had the special education administrator, an assistant principal, a special education teacher, her paraeducator, a physical therapist, an audiologist/speech therapist, an occupational therapist, and a nurse. It was a crowded room.
If we end up heading to mediation, we'll be contacting Washington Sensory Disabilities Services in addition to our current Deaf and Hoh services and also a special education lawyer, though I'm not sure how we'll pay for one.
I'm an old hand at fighting the insurance company by this point. We'll get it figured out, though it's not really something I wanted to be dealing with at this point in time. Oh well.
~Jess
Oh, Jess, sounds like a rough few days. The IEP sounds so discouraging, but fight, baby, fight!! We had to do an IEP and it is very intimidating to say the least. But I think if you go in with some force on your side, you will get what Connor needs. I am sure of it.
Sending you big hugs, lots of compassion, and a giant dose of confidence and strength to get you through the battles. You are incredibly strong, although you probably don't feel like it right now. ;)
Hang in there! There are lots of folks praying for you and Connor.
I'm adding your blog to the link list in our social network for parents of children with Failure To Thrive.
Rodger Bailey, MS
Oh, Jess. I'm sorry. And I agree with everything Ellen says.
Once while I was pregnant with Emmett and I was crying over the situation, my dad said, "Get all of this crying out now, because once that baby is born, you have to be strong enough to go to battle for him. You may be the only voice that little boy has." I try to remember those words when I find myself sinking.
I know from reading your blog that you are MORE than strong enough to go to battle for Connor. So, yeah, it's time to gird your loins and head back into battle. But Connor has such a gift to have you as a mom - he really does.
{{{hugs}}}
Oh dear, that is so disappointing. So sorry you have to go through this. The continual fight is a pain in the you-know-what but our kids ... well, aren't they just so preciously worth it? I really empathise with you babes! Not in a good place right now ... thinking of you.
Oy, ve! As others have already said, fight the good fight. (Note that I did not say the "fun" fight.)
Why do we always have to FIGHT to get what our kids need?? Although I'm in Canada and our systems are different, we're having the same fight over getting Kasia's pediasure plus covered. Not only will our insurance company not cover it, but we're also unable to claim it as an allowable medical expense on our tax return. WHY NOT??? The child has been growth restricted since birth, has GERD, eats like a bird and at 4 years old weighs just over 20 pounds. If she didn't have pediasure, I don't know where we'd be!!
Oddly enough, cosmetic surgery is an allowable medical expense. Lucky are those who have healthy kids but need boob jobs.
I'm so sorry this is all happening. Stay strong! I'm rooting for you!
-Jing
Good luck with the mediation with the school district.
the Insurance company is a whole different monster. If you can't get them to help you might just go directly to your state Office of Insurance commissioner. They helped me out considerably and it really is amazing how quick they change their tune when they start getting letters for the state government.
Hang in there.
I can't thank you all enough for your words of support and kindness.
It's so easy to be angry and frustrated with the system, and it's so nice to know that there are folks out there who believe in Connor and know that we are doing the right thing by fighting for his needs.
Thanks for giving us someone to lean on as we begin our journey to getting Connor the support in school he must have to succeed. Knowing there are people out there rooting for us is more important than you could ever know.
~Jess
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