New here and have IEP mediation Monday. Can use some advice

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Hello
I have been lurking here for a few days now, and have learned so much from your forum.
I am going to try and keep this brief. My son is 8 but functions at about 24 months to 3 years old.
My son, Nicholas, had a life saving bone marrow tranplant 5 years ago, and complications from that transplant still linger.
He has high blood pressure, cataracts, iron overload from multiple blood transfusions prior and during the transplant.
In July of this year, he was diagnosed with autism. Severe autism and mild mental retardation.
He still sees a pediatric oncologist every 12 weeks to check all of the above.
I have been trying to get him a 1:1 full time aid since he has started first grade. He is in main stream room as well as pull outs
for speech therapy and special education time.
At our last IEP meeting, (4 IEP meetings in 7 weeks) Nicholas's dad and I walked out, when the Special education coordinator called the medical
letters we provided to them stating Nicholas needed a 1:1 aid full time, and will need one full time for the rest of his life, "Just medical doctumentation".
I have a 7 page letter from the childrens hospital where he had his transplant AND where we took him in July for his autism diagnoses. I have a letter from the
bone marrow doctor stating Nicholas needs a 1:1 full time aid, and I have a letter addressed to the principal of his school from the Neuropshych doc that did the
6 hour testing and diagnosed Nicholas with autism.
3 letters from medical doctors who know him inside and out, and the special education coordinator refuses to comply.
Nicholas's dad and I have been going to school with Nicholas, as he is acting out, over stimming big time, crashing, regressing, knocking other kids over, ect,
because he just can not handle all of the things that go on during the day. He is unable to go to the bathroom by himself at this time, he has to have lunch from
home prepared for him at school as he can not have iron in his meals. He has to have alot of water during the day, as his kidneys and liver took quite the hit
from all the chemotherapy he had. He is obsessive and will just dart off if he see's something he wants to do. He has no fear of danger at all. He does not understand that fire will burn, water will drown, cars will run you over...ect.
All of this is documented, but still nothing.
We have mediation with the state of Education on Monday. His doctors have contacted the mediator, but it just infuriates me I have to go thru this after all he has
already been thru!
Does anyone have any words of wisdom for me???
I know that I have left alot of things out....trying to keep this brief....but my little guy is calling me to tuck him in, and I really want to wake up to some
good help from you wonderful, experienced folks!
Thank you in advance for any help you can spare.
I want to go in armed with anything I can get!

Hi!
I am also relatively new here and have been fighting with school for help, so I have no specific help to offer other than to suggest that you do what I have and do a search here for IEP. You will find a lot of great info as many folks have been through this. I have my son's first (of many I am guessing) IEP meeting today.
Feel free to private message me anytime if you need an on-line buddy to go through this process with. If nothing else, it helps to have someone "listen". I have vented here several times already. Always helps.

Ann

Mom2Nick;

I feel so bad that you and your son have to go through all of this ON TOP OF the medical stuff that you've already had to deal with.

I have had a very similar experience with a special education counselor when my son was 5 and we were living in California. I would be very interested to hear where you are located.

Although my son didn't have the medical difficulties that your son is dealing with, he did have a PDD-NOS diagnois from Children's Hospital in Pittsburgh (where we had just moved from) and from a top-notch diagnostician in the Sacramento area (where we had just moved TO). We spent an entire year fighting over the right to an aide, the right to mainstreaming, the right to all sorts of things that should come relatively automatic for our children.

What I learned in California was this:

1. The special education counselor is NOT your friend. It is basically their job to save the school district money, and they will do that by denying services as much as possible.
2. You need to bring somebody to these meetings with the school district that is on YOUR side -- a mediator, a therapist, a diagnostician, a lawyer -- whoever you can scrounge up.
3. Sometimes, just mentioning that you will be discussing these issues with a lawyer is enough to scare them into doing what the school should do. We had this situation when they wanted to bus our son 45 minutes across the city of Pittsburgh at five years of age to a different preschool. When we just mentioned the word "lawyer" suddenly they had a spot available to the preschool that was five minutes from our house.
4. Bring a tape machine to every meeting, and let them know you are recording. This is your right.
5. The school district will be very clever in manipulating you. At first they will try to manipulate you into giving up your rights at all to a fair and equitable education for your son. Then, if they are very bright, they will manipulate you into thinking that they have suddenly found a fair situation to educate your son, and it may even look good, but after the fact you may find out that it is not good.
6. The legal route, which can be good to threaten with, will cost a lot, and will take too much time. While you may win your fight, it may be too late to benefit your son.

The point is, if the school district will provide an appropriate education for your son, his behaviors will improve. You, and he, deserve the best possible outcome. We found out -- too late, as we had already decided to move across country BACK to Pittsburgh in order to get a good education for our son -- that there were districts near us that would have provided more. You may have to do a lot of school district shopping, and you may have to move, in order to get a district that will do what they should. But if you are willing to fight the good fight, you may get what you want by just being smarter and more diligent than the school district.

Thank's to both of you for your replies.
We live in Idaho. It is just upsetting that the school thinks they can override what a doctor says.
I did get a call today from the Idaho disability. They are passing my info on to a advocate and they are supose to help me navigate thru this mess.
Our mediation is set for this coming Monday, I have a great special education teacher that is going with me. She also is livid that the school is doing this.
I did get a email from the Neuropsych doc, and he said that he still believes the Lawyer is the way to go. I am willing to give this mediation a try first, and then
go on to the lawyers. My doctors say they will back me 100%.
I am very sorry that you two are going through this as well. I am so very thankful that you both answered my post!
I guess the 3 of us can commiserate together! Thank you again, and I will keep re-searching different things people say at these kinds of mediations.....
Thank you again!

It sounds as if you are in good hands and are on your way to getting this matter settled. Good luck! May the force be with you!

We are in a decent district, they are in fact the ones who decided my son needed services, but still the stories vary. Basically, there is no money and they are going to work as hard as possible to keep from paying for what they see as extras. We were just told today that my son no longer qualifies for OT, even though he has what seem like severe motor problems, but the reality is he's learned enough work work arounds to get by. For now. I guess. Expectations change, and then it all gets reconsidered ... my son "graduated" from speech in 4th grade but requalified in 6th.

Sorry for the tangent.

One thing I'd like you to think about is if an aid is the best answer for your child. I know its the common route taken, and for some kids it works, but other kids really need to get out of the busy school environment all together, and having an aid won't change that. Think hard about each specific need, what is making the stims, what is making the environment stressful, and so on, and decide if an aid will be the best solution. From what I've seen, aids are not very stable, and talent varies.

I am not suggesting you should say, "OK, fine," to the district. Not at all. Its more that if you are going to pull out the big guns you need to be sure that what you are asking for is, in fact, what you'll be happy receiving. A small private special needs school might be a better answer, for example, if there is a good one nearby (we're really lucky to have one, several friends have children there).

Your situation is much more dire than mine but parts of your story are very similar. My daughter, who is 6, is in 1st grade and has AS. Her Neuro said she must have an IEP to succeed so I initiated the eval with our district. 3 months and a 10 page report later, they have simply glossed over her differences and focused on her strengths. She is very cognitively able but has major anxiety. She comes home each day at complete overload, having held it together all day. In their report they state she spins and flicks objects in front of her face, doesn't respond when spoken to (selectively and what they call purposely), and has oral motor fixation where she chews all day. I have learned her teacher (who I do not blame as she doesn't have any knowledge on AS) gives my daughter gummy bears to try to bribe her to engage in the classroom. The list of issues goes on. Her scores revealed 6% eye hand coordination, 11% in visual motor, 11% in delayed memory, etc but because she has 90% + in other categories they say she is "average". I'm so fed up with the schools and how much effort they put into refusing to do anything, when the little things they could do would go so far! I asked for a go-to person for my daughter for moments of anxiety or overload (like a counselor), preferencial seating, teacher checking for understanding, and emotional support. None of this should be hard for the district to ensure and yet they expend extreme effort in an attempt to refuse services. They actually say AS is a medical diagnosis that is "not academically relevent".
I am seriously thinking of pulling her out but fear the anxiety it would create. She's very rigid with routines.
The state of our schools is very, very sad.

Thank you for the replies.
Today, a advocate for the state disability for children called me. (Co-Ad is their formal name).
I emailed her a couple weeks ago with what my son is going through. We talked for 45 minutes and she is applauled at how we are being treated.
She has worked with the mediator that was chosen for us in other mediations, and said he is fabulous and that we could not ask for a better one.
She also suggested that we shorten his day to 3 hours. He goes 7 1/2 now, with pull outs for speech therapy and special education times, and cool down periods.
She suggested that we ask for 3 hours per day, then gradually add 15 minutes to his day, as long as he progresses, not regresses.
The teachers lose him after lunch, so this makes sense. She also stated that the Co-Ad advocates are trained in Autism and will go to his school at no charge, and train the aids
and teachers that work with him. The Co-Ad is federally funded, so they are able to do this. She did state that they choose different disability issues to handle each year, and that we didnt fit into what they were doing this year, BUT....because of our documentaion, medical history, IEP meeting frequency, teachers on board with our side, the advocate will keep my son's file open, and if we are not granted the aid, she will file a due process for us and continue on to litigation, as she is convinced, this is all about funding, and not about the needs of my son. The teacher helping me with our end of mediation also stated that cutting my son's day in half, will probably make a huge difference as well, in both his learning and finding just the right person who is a great fit with my son. At this time, I would prefer him to be in a small setting. His immune system still is not up to par, and he is secluded when any type of sickness starts at the school. I do not want to switch schools if I dont have to, as he know this school, his friends, his teachers. Starting over would send him into total overload. So we shall see. If anyone has some extra prayers, please direct them toward Idaho at 8:30AM Monday morning!
I will keep you in the loop. The advocate asked me to please call her Tuesday morning and let me know if we were able to finish the mediation in one day, which she does not think will happen, or if we recieved the aid, or if we need her to start due process.
That way my day today....off to do even more research. Thank you so much for all of your responses. It is hard for a mom to fight so hard....but it really helps to know that I am not the only mom fighting for what is right for her kids....when sometimes you feel like it is just you against them!
Have a great weekend everyone!