Yes, the IEP was almost a month ago.
Yes, I am extremely sorry that it has taken me that long to write an update.
So much has happened since then and there is still so much to do but I can fill you in on where things are as of right now.
Parker's IEP/Transition to high school meeting was in the morning. One of the things that was suggested to me many years ago was to always bring treats to IEP meetings, food makes everyone feel better and it shows you care. I do believe this is important. Even when I've been at odds with the district, I've always taken something. These meetings, even when things are going well are draining and emotional, and the effort is appreciated. So, I loaded up with 3 types of muffins, fruit and a variety of juices and went to the meeting.
Honestly, that is the only real part of the IEP that I remember clearly. I remember what I brought for them to eat.
I remember that, as predicted, I cried through the entire meeting. I usually cry but this was different. Typically tears stream down my face but they don't really affect me. This time the tears were different. They were accompanied with fear. The few times I needed to talk or ask a question, I could barely talk. While I wasn't sobbing, the tears streamed endlessly and talking was not easy.
We talked about what elective options there were for Parker (which, honestly are not many but in all fairness this is a small town and they are offering all they can for their size and resources).
My biggest fear is Parker won't be included with his typically developing peers - furthering the gap between them. Right now, they are pretty tight. The entire class looks out for him, they help him in class, in the halls and play with him at recess. High school is different. The classes are different (and longer), there is no recess, the options for interaction is very hard to find. Parker gets to choose 1 elective that will be with his typical peers. He will be in regular PE. And he has lunch time. That's it. That will be the extent of our inclusion. A vast difference from what inclusion is for him now.
The team encouraged Art for Parker's elective, which came as a bit of a surprise to me as we pulled him completely from art before because he disliked it so much. But, he's a kid and changes his feelings on things more often than some people change their underwear so...maybe it would be good for him.
The campus is closed for the freshman for the first semester. Starting the 2nd semester (mid January) they can earn open campus at lunch which means he can walk to HyVee (grocery store), McDonald's or the Dairy Queen for lunch. Or, he could get in a car with a friend and go anywhere. The team thought it would be a great goal for Parker to go at least one day a week to McDonald's (or somewhere) with his friends at lunch. My heart stopped. I'm pretty confident that if there was a defibrillator in the meeting room, I would have passed out completely having faith that they would've shocked me back to life. While part of me thought "Yay!! That is awesome, he will LOVE that!" and "that's a very typical thing to do!" The mom in me thought, "Are you f*#(@$g kidding me? Do you know what this would take? Let's get past the obvious of teaching him the responsibility of walking there and back, ordering, leaving on time, paying for his food but there is so much more. Bullies. Meltdowns. Weather. Do you know how many 'what if' scenarios I could give you?" My response was, "Will he have a para with him?" The initial answer was "no, the goal is for him to experience a typical lunch away." So the practical mom in me replied, "So, it would be the responsibility of his friends to get him there, food ordered, and back to school?" "What if he has a meltdown? What if they don't have what he wants and he falls apart? What if they encounter someone making fun of him at McDonald's or wherever they are? Or worse yet, someone being mean and bullying him?" "What if he decides he's not going back to school?" I could have went on and on but stopped and said, "While I want him to have this independence I do not think it's a fair expectation to put on his peers at this point. I would want a para there. Not by his side holding his hand but in the distance so if there was a problem, he has an adult responsible for him there." There was an agreement on that so we kept it as a goal.
We left with very little worked out. We knew that we are going to try to get a para from the highschool to come work with him for the last quarter so he has someone familiar in the high school ready to work with him (I love this!). We knew he has 1 elective to pick. But a lot was unanswered.
In the hall after the meeting a well intentioned member of the team told me a story about her daughter (typically developing) and her relationship with a special needs student. She talked about how her and this boy with special needs (but very high functioning) had developed a friendship. He had told her (or she had witnessed, I can't remember which) a popular, pretty girl being flirty with him and telling him she'd like to have lunch with him. Later that day at lunch, she noticed him standing by the door waiting for this girl who never showed up so she said that something must have come up and asked him to have lunch with her and later confronted the girl, telling her this behavior was bullying. I'm honestly not sure how that story was supposed to make me feel better or at ease. While it spoke very highly of her daughter, it was a scary reminder of how cruel kids are and can be. It certainly did not make me look forward to sending my son to high school.
A couple of days later I attended the freshman orientation. It was really well done, it was nice to see a program book with Parker's name (even though I already had the Special education one) and be surrounded by the parents I have come to know since our kids started kindergarten. (They are pretty amazing and I always feel comforted by them) While I sat in the auditorium with my friends Lori and Kim, I listened intently and breathed a sigh of relief that my freshman won't be taking driver's ed (I think they are way too young at 14 to be learning to drive!) and did great until 33 minutes in when the Superintendent said, "The high school is not the warm fuzzy place the middle school is, it's a cold hard place." and that brought tears. While I kinda got where he was going and felt he just chose poor wording - it was hard to hear none the less. After the presentation we went to meet some of the teachers and walk around the school. Because I'm not from here, this was a great way for me to get a feel for the building and it's layout.
The following week I set up a time for a tour of the high school with the principal and the kids' dad. The principal and I attend the same church, she's watched the kids grow up and it really helps me feel comfortable with her (and trust her a lot). She set up a schedule for us to see many classes during the visit, both typical and special education classrooms. It was nice to see many of Parker's friends from Special Olympics (they are a great group of kids) but it also made me realize how much lower functioning Parker is than most everyone else in the Special education rooms (they felt more like resource rooms). The staff was great, I cried through each room we visited. I asked, even though it wasn't on our schedule (or any part of our initial request or plan) to see the Ag room and program. I was yet to see a way for Parker to fit in or find something that would leave me feeling better. When we walked back, while I knew the classroom portion would be too much, the hands on portion seemed like something he would enjoy and then I caught it out of the corner of my eye and followed the principal in the direction of... a green house! Small but functional and something Parker would absolutely love! There a ton of ways this could work for him. He could be responsible for watering the plants once a day/week/however often they need watered, he could repot, he could have real responsibility doing something he would enjoy. Sounds great, right? Except - it's not been done before. Not what I'm looking for and asking. My brain was working faster than I could think with the endless opportunities that he could have at the high school if we could just... customize (really customize) a program just for him. As I started to worry about how I would bring this up while discussing Parker's needs the principal said exactly what I wanted to hear (well, sort of) "It looks like Parker will be our guinea pig next year" Yes! Yes, I want a very customized program for Parker to meet his needs, include him and give him real preparation for life. Yes! I'm kinda ok with him being the guinea pig (it's not the first time) but No! Really? Again? Sigh. But this time, it's not just MY ideas, it's a team. It's a team who wants what's most appropriate for him. It's a team that sees educating Parker and preparing him for his future requires thinking outside of the box and flexibility. And while we don't have a plan yet - I have comfort in knowing that this isn't going to be a fight. It's going to be new, it's going to present some challenges but... it's going to be ok. I really believe it is. (I'm still going to cry) ;-)
To learn more about Fragile X Syndrome please visit the National Fragile X Foundation's website.
*Fragile X is the leading cause of inherited intellectual disability and the leading known genetic cause of Autism.