My neck is stiff from poor sleeping last night, my heart has been pounding for the last few days because I am worried about both of my little boys.
I was up late with Ben because he spiked a fever and I was concerned that he would have a seizure again. He didn’t, thank goodness, his anti-seizure meds worked.
I was also worried about a school meeting scheduled for the next morning.
I had a triennial meeting today about Jason. I was expecting one person since we just had his IEP meeting a few weeks ago. I walked in to the conference room and was greeted by six people. These six people will determine the needs of my child and I silently go into “mother lion” mode, ready for battle, because I always feel like I have to prove a point and fight for services even though he does receive services already. These meetings determine the continuation of services and eligibilty for additional services, so I never know what to expect.
Certain pediatricians and specialists warned me about the school system as well, citing that because of an overwhelming amount of children with special needs the school system often pushes kids out of services or denies services in order to get new kids in. Let me tell you, that is what keeps me awake at night pretty often!
For example, I spoke with Ben’s teacher about his need for OT services because he has low muscle tone (diagnosed by a specialist). She said she would have him evaluated by the school OT. Well two months later we have Ben’s IEP meeting and she only JUST mentioned my concerns to the school assistant principal ONE week prior to our meeting. So he was NEVER evaluated. I was furious because I was also told that the school has another 65 days to complete their evaluation, so now by the time they get this done school will be over for the year and he will NOT receive the OT services that he was entitled to! Talk about an angry momma!
The assistant prinicipal apologized for the mistake and the teacher claimed that she was not at fault…but the bottom line is that Ben has been neglected.
See I went throught the same process with my other son at the same time. His teacher made sure he was evaluated prior to the IEP meeting but then they pushed the IEP meeting ALL THE WAY to his yearly date instead of earlier like I had requested. So he as well did not received his entitled OT services until the very day of the meeting.
Legally, I have the right to ask for an early IEP meeting, which I did. I was told “we’re scheduling it soon” and then “we have a computer glitch” and so on. Magically the IEP meeting landed on the yearly date. Conicidence? I think not. The school pushed me aside and scheduled the meeting for when they wanted, regardless of Jason’s needs.
As of now I am still waiting to have Ben evaluated for OT and I requested services for him back in November!
So how am I suppposed to trust the school system in making sure that both of my boys are being taken care of? I also would like to know how to do it in a manner without coming off as a…”you know what”. After three and five years of services and my boys are still significantly lacking in many areas, it is my duty to demand and make sure that their needs are being met. I question the schools every decision and stay on top of them with emails and phone calls, no matter what they think of me. I have to now.
Here’s another example with Ben’s teacher again. During his IEP meeting it was determined, by her, that he did NOT meet criteria to be eligible for ESY (summer school). Before I could even speak the assistant prinicipal actually gave reasons that he should go to ESY and he was accepted right then and there. Had she not spoken, my point of view and concerns would not have been listened to and Ben would not have been granted ESY services, because the teacher has the say, not me!
Isn’t that incredible? He would have gone the entire summer without any services from the school.
Thankfully, both of my boys will be going to ESY. It is actually a financial hardship for us because I would have to pay for full-time daycare in order for me to work outside of the home. Even though the ESY is free I would still have to arrange for daycare from the time they get out until I would get off work and pay full-time fees. The boys also have other therapies and appointments outside of school hours so I’m a stay at home mom and have been since they were born. I have an online transcription and typing business to help supplement our income but I don’t make a huge salary. Sometimes I miss being around other adults, besides the specialists! But this is what my boys need from me and I’m grateful that I can be there for them.
The meeting this morning went pretty well, it ended up being more of a formality. I wish I could have asked more questions but we were out of time and they had another meeting. Jason will still receive services and we’ll meet during the summer to make sure all is ready for him when he goes into kindergarten this fall. He’ll be almost six years old by then.
All I want is the best for both boys. I want them to know that I did everything possible to ensure a proper education, a happy and healthy life and that I provided them with the tools to learn and grow within themselves.
I’m their mom, it’s my goal in life.