Saturday, February 7, 2015

CCHS - IEP meeting round 2

I’m so over this. People just amaze me and not in the good sense.
Yesterday we had another IEP meeting and after 7 months of battling the school district on my own, this time I brought an IEP Advocate. We addressed every issue, from the lack of timely response from the district, to the lack of follow through on everything previously discussed in the last IEP meeting back in October, to the ongoing district’s denial of the ASL issue. What it boils down to is this. Wyatt has yet to start pre-K and the school could not explain their lack of implementation. The school also could not explain why the district’s Physical Therapy and Occupational Therapy evaluations have not been performed yet. And when it comes to the ASL issue, the school is simply ignoring it altogether. They are continuously trying to bypass the issue and don’t want to make a decision on an appropriate educational placement. At the same time however, they also are not willing to write a letter of refusal which is what they legally have to do if they disagree with my placement request for Wyatt to attend a Total Communication Program (ASL and English are used simultaneously). The thing that neither I nor my IEP Advocate understand is why they are ignoring all the medical documentation in Wyatt’s file that supports such placement. They are scared of liability because of his cyanotic breath holding episodes yet they are refusing to accept that ASL has been the only effective communication mode that has reduced the number of daily episodes. He has medical clearance to attend school. It is also documented in writing that he used to have 15-20 episodes before using ASL which has been reduced to 1-5 daily episodes with the use of ASL. I even showed them a video to show them what exactly a cyanotic breath holding episode looks like when the communication barrier becomes a problem. Every medical documentation on file, including a private physical therapy evaluation, clearly state that ASL is his primary mode of communication and it needs to be supported to prevent these episodes as much as possible. It is also documented in the school district’s speech and language evaluation back from September that Wyatt is non-verbal and uses ASL. The same is documented on his private speech evaluation with detailed ASL therapy goals yet the school is not willing to even write down any ASL goals because they say they don’t know how many words he understands and can signs. That is a straight out lie as the district has had that detailed list of vocabulary words in their records since their original evaluation back in September. Additionally, they have a list provided by me detailing 4 pages worth of vocabulary in the form of the curriculum we use at home proving that he is far past basic vocabulary, plus I showed them videos of him signing. Educational goals in IEPs, such a recognizing 5 out 10 letters, are established without ever first testing what the child knows. Therefore their argument about needing a different approach to set ASL goals is false. This is not a personal preference, this is a medical necessity to prevent these life-threatening episodes and the school is not even willing to acknowledge that fact. After 3.5hours of this dance we made it very clear to them that a decision had to be made that day. The school only had two options. They could either write a letter of refusal and then we will file due process, which is a fancy term for taking the matter above their heads, or they can get that illusive district person who according to them has authority to decide this matter on the phone and settle this. Side note, legally the IEP team has the authority to make placement decisions even when it means the most appropriate setting for a child is in a different school. Worried we will file due process, the school asked for another meeting scheduled for next week that will include that illusive district person who according to them has authority to decide this matter, plus members of the staff from the Total Communication school to better assess the ASL issue. Our objections were clearly noted that bringing someone new to the table who has no knowledge of what has been going on for the past 7 months is inappropriate as it will start this process all over again. Given the currents team indecisiveness however, we agreed to play along knowing that the next meeting will most likely also be inconclusive and we will file a complaint with the state regardless of that outcome. The only two positive things that came out of that (in the end 4 hour long) meeting was that the district has nursing all lined up and is ready to go on that front, and we have a new district speech therapist involved now that has worked in the Total Communication Program before, is fluent in ASL and is supportive of any and all methods of communication. Therefore, we have asked for another district language evaluation, different from the previous one, that will specifically evaluate Wyatt’s comprehension and use of ASL.

All this just makes me angry. Why would a school district even hire someone to be an IEP compliance person when on a personality level they are indecisive? That in itself is contradictive to their job duties. But what really fuels the fire for me is that this ASL issue has been on table since the beginning. We didn’t suddenly overrun them with the placement request yesterday. ASL being my son’s primary mode of communication is in all of his records even as far back as when he was in the Early Steps program before age 3. The school has all the documentation in front of them and the Total Communication placement request has been provided to them well ahead of time in writing. At the bare minimum, they should have acknowledged that request and already had the appropriate decision making people attend yesterday’s meeting. Instead, it was very apparent that this topic was not supposed to be discusses, much less supported. It was very apparent that this continues to be a pass the bucket game in the hopes that the longer this gets pushed out the more likely I will eventually either walk away completely or give up and go along with whatever the school is comfortable with. It didn’t seem to matter to them that even the IEP Advocate made it clear that the handling of my son’s case has been inappropriate since the very beginning and that we have every reason to turn this into a legal matter. It makes me angry when I get the condescending “but you don’t really want him placed with the deaf and hard of hearing kids, do you?” AS if that is a jail sentence or something. Yes, I do want him placed there! His hearing might be fine but he is non-verbal, uses ASL as his primary mode of communication and therefore the appropriate and least inhibiting placement for him is that of the deaf and hard of hearing program. In his case, it is not a decision based on personal preference, it is medical necessity. Any attempt to place my son in a setting where his mode of communication is not supported is considered negligence as it is clearly documented that such placement would cause severe increased medical risk.

Wednesday, February 4, 2015

I have a favor to ask. My youngest son has a rare life-threatening condition called CCHS which makes him ventilator dependent during drowsiness, sleep and illness, among other medical obstacles. To try to raise awareness and hopefully increase research funding, one family of a child with CCHS has produced a movie ( "Our Curse") detailing our daily struggles and this movie has now been Oscar-nominated. PLEASE SHARE TO SPREAD AWARENESS! The more people that watch this and share it, the higher the chance of an Oscar win and therefore, the higher the chance of research money for this very rare condition!