Heart broken and melting

I don't even know if I have to words to describe today. I'm just so blown away and frustrated with the education Jayen in receiving. I came to the meeting prepared and ready to battle. Thankfully one of my top concerns for the meeting today was not an issue. Jayen was medically diagnosed with Autism by Dr. Toth after our FoxG1 diagnosis then reconfirmed by Dr. Melmed a few weeks ago. I was worried the school would not see this as his primary diagnosis. I think my reason for pushing for that might not be for the best reason, but if we go with the ESA scholarship they pay more for a primary Autism diagnosis. That portion of the meeting actually went quickly. Jayen's test scores were presented and he, of course, fell below average in nearly all areas. The one area he seemed to be on target for surprised me; Jayen is academically considered able to navigate his environment and therefore was dismissed from physical therapy services. Matt and I both had a hard time with this and didn't quite agree with the decision but we both know that we can call a new IEP meeting at any time to add those services back. After all the was presented, I started in on my questions and concerns. I was quickly halted and told we could address those in our IEP meeting. Since everyone wasn't there we will have to schedule another meeting to discuss the IEP concerns. I didn't stop sharing my thoughts and feelings about the education Jayen was receiving at the school. I was able to find a PowerPoint on the district website specifically for principals and special education. I read three of the slides out load, outlining my grievances.

The IEP is written by an IEP team to ensure a child receives a FAPE. The IEP is a binding contract that describes the child’s educational plan and must be followed without fail. When an IEP is not followed the school denies a child with a disability a FAPE.

The following must be completed by the Service Coordinator:

• Meeting Notice
• Must contain the meeting purpose
• Must include the roles of the meeting participants
• Draft IEP
• Must be sent to the parents at least 10 days prior to the IEP meeting
• Must be marked as draft
• Must have parental input
• Prior Written Notice
• Must be given to parent prior to the start of the IEP services

 

IEPs should be implemented as soon as possible following the IEP meeting at which the IEP is developed. An IEP must be in effect before a school can provide special education and related services. Schools must ensure that IEPs are accessible to each regular education teacher, special education teacher, related service provider, or other service provider who is responsible for implementing that IEP, and that each of those individuals is informed of his or her specific responsibilities related to the implementation of the IEP. Moreover, all relevant school personnel must be informed of the specific accommodations, modifications, and supports that must be provided to each child in accordance with his or her IEP.

This school is in violation of the IEP. They are clearly not following the law and my son is suffering. I can't wait for them to make changes anymore. I can't wait for them to do what they say they are supposed to do. I can't continue to let them do this to my son. I wasn't sure how to take their reactions. There was a lot of head nodding and pointing to the parental rights booklet. I was told they agree with my concern and have tried to address them themselves but have been unsuccessful. I'm so hurt that these professionals have known that these were issues and never stepped up to make sure the didn't happen to my son. Since Day 1 I have been complaining about the education he has been receiving. We set the next IEP meeting date and dismissed the rest of the team. My concerns were then brought to the assistant principal. I felt like she really heard me and is willing to work to make a difference. I'm just not sure it isn't too late for their intervention. The assistant principal and the school psychologist were working on a communication notebook that would specifically address the IEP goals to ensure they were being worked on in the classroom. They assured me this would be completed Monday and emailed to me for approval. I was also assured I would have a copy of Jayen's progress report by the end of the day and haven't seen that either. I have no confidence left in this school. I'm not sure any more chances will really accomplish anything since they have proven time and time again there is no follow through.

 

After all the drama today, I'm not sure I was prepared for what I received in the mail; Dr. Melemed's official report. I think my heart broke and melted at the same time. The medical statements about Jayen are always hard to swallow. His prognosis seems so devastating. It was also hard to hear the new diagnosis. But my heart melted when I read the comments about being happily married and despite Jayen's "severe behavioral challenges along with his developmental challenges are such that they compromise his performance in a variety of situations. In addition, they compromise family functioning as well. Despite this, Jayen has a wonderful family and it was truly delightful to see the very positive interaction, support and love that was showered upon Jayen by both of his very understanding parents." I'm still reading and re-reading and processing the report. But for tonight I'm just going to go to bed with a smile thinking about the kind words written about my family.