We have had a quiet 3 years since winning our fight for accessibility in our school district. Today I met with the IEP team to have some questions answered. I asked 3 questions on June 21st and again via email 3 weeks ago...
1. Will Jarrett have his same 1:1 assistant that he has had for the last 2 years?
2. Has the transportation and transportation modifications been updated and added to the IEP? If not, please do so and I will sign off to amend the IEP without a meeting.
3. Who will my child's teachers be?
I have asked these questions every year for 3 years and received immediate answers. Well, until this year. I normally get the answers by the last day of school. I prefer to be proactive rather than reactive in case there needs to be training or meetings need to be scheduled. 3 steps ahead is where I am comfortable with Jarrett's care. Anyone that knows me knows I am an open book and very thorough. This year I asked and never received a response. I became concerned 3 weeks ago when my questions had not been answered from June 21st. I received an email on Monday stating we needed to attend a meeting to get the answers and the meeting was scheduled for 10:30 Friday morning.
I never get comfortable with meetings because I never know when the proverbial rug will be pulled from beneath my special needs child's feet. Today, that rug was pulled from beneath his feet and thrown at us without them even blinking. The district administration has made the decision to assign Jarrett a new 1:1 assistant. The fact that they have decided to tell me about this 2 weeks before school starts which literally leaves 1 day to train her. They had to tell me because I asked the question. What if I never asked?? When will this woman be trained? What does she know about him? What are her qualifications? My son would have gotten on the bus the first day of school and arrived at school to a stranger who will ultimately be responsible for his personallcare including help with cathing. Nope. Not on my watch. My child went through a huge surgery 6 month ago and has had amazing support from his aide. She and I both worked closely to give Jarrett as much independence as possible. We had a great friendship and respect for each other.
The district administration tried giving me some bologna about how kids cannot get too attached to caregivers because they need to work with different people throughout their school career. Anyone that knows Jarrett, knows how well adjusted and full of life he is. His care involves personal care for toileting. I do not know how many feel, but I would not want to show my stuff in my shorts to everyone. That is private and sensitive and deserves dignity. From time to time he has #2 accidents and it is traumatic for him because he feels embarrassed. His former aide did such a wonderful job of keeping this private and coddled him when he got upset.
A new aide means we now have to train someone all over again. She needs to learn all of his needs from assistive devices such as the walker and leg braces, toileting regimen, evacuation and lock down drill procedures, shunt failure warning signs, etc. At today's meeting this person did not even say hello or acknowledge Jarrett. The district has left us with 1 day to train this person and that day is the Friday before Labor Day. That is a day we as a family had planned to be out of town.
As an advocate I have always told families, you the parent are an equal participating member of the IEP team. Today I learned that we are really not. The NJ AC 6a Chapter 14 code says we are, but that does not seem to matter to high dollar earning administrators. We are merely attendees of the meetings while they all make decisions for our kids that they barely know and we are left to accept their terms or fight the best we can. Today, tomorrow and always I will fight for my boy. Get ready Hamilton, you rattled the wrong Momma Bear's cage again.
