I am mom to CJ a 7 ½ year old 2nd grader who is a smart, sweet, funny, inquisitive little boy. He will talk to your ear off about any and all vehicles. In fact, I know more about Monster Trucks than I ever thought I would know. He has a great memory- he remembers facts, dates and names that blow my mind. He loves math and science – especially trying to figure out how things work. I see a mechanic or engineer in our future. But if you ask CJ he will say he is going to build his own Monster Truck and race it.
CJ is also brave. He faces many challenges in his day. These challenges are invisible. Everyone says he is doing great – just like his typical peers. I am happy he is doing things like his typical peers – however what they don’t see is the before, the after, or what is going on in his head when a schedule or expectations are changed. CJ has a plan in his head of how his day or events are supposed to go. When something alters that plan – we call them bumps – he is anxiety ridden. Routines and schedules are a vital part of our every day. CJ is learning to adjust or be flexible when he hits these bumps. He is also learning social language and social cues. The social dynamics of his peers are changing, and CJs are too – but CJs change at a slower rate.
CJ was first diagnosed at 3 ½ by the Child Study Team at Yale with PPD/NOS a high functioning form of autism. Around the same time we had contacted our districts Early Learning Program to see what kind of services they could offer. They did an evaluation and gave him the educational label of developmental delay. Before Kindergarten the ELP team re - evaluated him and gave him the autism label. When your child is diagnosed, no one gives you an autism manual with the dos, don’ts, directions or resources. It is up to the parents to seek the help they need. Many parents, myself included, look to the school team to guide them. Those first PPTs when CJ was in ELP were a great experience. The team was compassionate, supportive, and informative. CJ was receiving OT, SPL and academic support. The OT services centered on fine motor – writing and cutting – essentials of school. What they weren’t addressing was his sensory seeking behaviors. We sought an outside OT to help with sensory as well as the fine motor skills.
Kindergarten brought CJ to a different school – this meant a different team. This team was the opposite of what we experienced previously. They were often close-minded, didn’t listen to anything we said, and just didn’t seem to care. We walked away from meetings feeling that we were a big bother to them and that they didn’t care about our son. He was paperwork to them another item on their to do list. At CJ’s annual PPT in Kindergarten – the school team dropped a bomb on us. They could no longer qualify him for an IEP – he had mastered all of his goals and they couldn’t justify giving him services any monger. Instead, they wanted to give him a 504. The team agreed that CJ needed OT – and he would get that with a 504 as well as a once a week lunch bunch. We walked out of that meeting and knew we needed to contact an advocate. I understand in NYC schools, an advocate is almost always present at PPTS. In Ct, when parents bring an advocate it is the step before lawyers and due process. When parents bring an advocate to a PPT, the school team sits up a little taller. I thought being a teacher I would have no problem at a PPT – I know Special education laws, I know what a good IEP looks like, but I couldn’t do it…I needed to be his mom and let everyone know how I see him – as my little boy. Hiring an advocate was the best thing we ever did.
That first PPT with the advocate was stressful, tense and emotional. The school team was not happy we had brought an advocate and they wanted to make sure we knew they weren’t happy. The principle even said, “Mrs. Teacher it sounds like CJ is only autistic at home.” Awkward silence followed. Lucky for us the director of special ed was there and she defended our son.
As a mom in PPT meetings, I want to have support and I wanted to be treated with kindness and respect. I need a school team who wants the same things for CJ as I do – they want to see him be successful both in and out of school. They want to help him not just with the here and now, but help prepare him for life.
As a teacher, I have a private chat with the parents before they walk into a PPT. They need to know someone is on their side. I tell them not to be afraid to ask questions. A lot of information is going to be thrown at them. Before PPTs I also read any reports or IEPs that will be presented so I know exactly what is going on. I want the parents to feel comfortable coming to me with any questions they have, and I need to know what I am talking about.
It is interesting being both a teacher and mother. I have sat on both sides of the PPT table. This year, we have another person sitting at our table for our son – his second grade teacher. She is kind, compassionate, understanding – everything we need. I know she wants the same things for CJ that I want – him to be successful in life. So, if you remember one thing from my talk today – be that teacher…kind, compassionate and understanding. Help the parents sitting at that table feel supported and understood
