Oh it is Sunday. Right now I have a gaggle of kids who are in and out of my house, garage, and deck. They are playing, fighting, running, and learning. It’s good. Our friend D came and sat on the deck for a while and we lamented the beginning of school and the changes in both of our lives. When I worked Saturday nights she used to regularly host my husband and kids by her house as I napped. Her husband used to work weekends and we had MANY barbeques together. Things are changing for everyone but Sunday Funday the edited version still happens now and then.
First the good. Ryan has had a really tough weekend. After school on Friday he was totally set off Saturday. He spent too much time screaming trying to force his bedroom furniture through the ceiling of the dining room. It was hard. He had more meltdowns Saturday than he had all summer. Tough day.
This morning I was determined to get him out, get some errands done, and spend some time with him. We rode out bikes a few miles doing errands. I love not having to use a car and biking is one of my favorite things to do. We rode about 6 miles total which is short for Ryan and I, but a nice ride. We picked up a few things we needed at the supermarket, the pharmacy, and the hardware store. Ryan chose the heaviest things to put in his backpack. I am not sure if he cognitively knows this but the deep muscle pressure of the weight of the bag is part of his sensory diet and is supposed to help with his behavior. We came back and he was more focused and present. He did have two meltdowns but they are not as bad as they were yesterday.
I have read that it is helpful to send your kids teacher a letter the first day of school outlining their issues. IEP’s and evaluations are long, ungainly, and hard to read. I spent some time last night writing a note to Ryan’s teacher. It is not often I have to condense his issues, our plans, future and present for Ryan in a concise document. It sucked having to look at all of Ryan’s diagnosis and issues condensed into a letter. Personally, it brings up all the grieving feelings to put it all out on paper. Living this is so different than the story because Ryan and Aaron’s issues are our normal so it is not sad. Writing it out brings out the sad. I am proud of the letter so I will share it with you all in case anyone thinks a letter like this might help their kid in the classroom.
Dear Ms. (name removed),
I wanted to touch base and say hello to you. I am Ryan (last name removed)’s Mom. As I am sure you have already seen in your classroom Ryan is a sweet, smart, yet challenging kid to be around.
As it says in his mountain of paperwork Ryan has ADHD, has had seizures, is diagnosed with a conduct disorder, and will be evaluated this fall for an Autism/PDD diagnosis. This summer he started having severe anxiety. Ryan is not on ADHD meds because almost every brain medication he has taken he has had the rarest of side effects, having to be hospitalized for a few. He also has a strong family history for heart issues. Believe it or not, after two years of being in crisis we had the best summer ever. He had less than two meltdowns a week, the best behavioral compliance ever, and he met almost all of his goals in behavioral therapy. Ryan has huge problems with transitions. This weekend already he has had more meltdowns than he has had all summer.
This summer we home schooled summer school using Time 4 Learning based on the COMPASS curriculum, which incidentally was the summer school curriculum the school used. Ryan attended behavioral therapy bi –weekly at first and weekly as school came closer. He sees (behavioral therapists name) who was in the school all year last year and we saw her in her office in the summertime. Ryan has handwriting issues. He received OT at CHOP this summer and I have an evaluation that I would like to bring to the attention to the school district because they told me he did not qualify for OT, there was nothing wrong with his hands. I now have proof of hand issues. Ryan also received PT at CHOP because of gross motor issues that popped up last year that were according to his neurologist due to the seizures. Ryan has not have a seizure in almost two years and has been off all the meds for a year but we are still seeing the neurologist here and there when things like the gross motor drop off happened. Ryan may still have an abnormal EEG scan and still has to have diazepam, a seizure rescue med at the nurse’s office. Hopefully the prescription will expire before we use it like it did last year.
Ryan is approved for part time TSS. If the transitions with the teachers moving in and out of the classroom pose a problem we can try to get more TSS hours. Ryan has a BSC whose name is (name removed). He is overworked but he tries hard. I spoke with (name) on Friday. I was wondering what happened to Ryan’s TSS because we had a meeting at the end of August saying that Ryan is approved for TSS through Oct 25th. At that meeting I was left with the feeling the TSS would start school with Ryan but apparently that did not happen. We should know more about that this week. I will be on the phone bugging them Monday because this beginning of school can get very hard for Ryan. I requested morning hours because the transition from home to school in the morning was very hard in prior years. Last year I picked Ryan up in the classroom at the end of the day because the melee in the schoolyard set off his sensory issues and he was kicking his brother or I in the shins. We are going to try regular pick up and see how it goes for now.
I want to call an IEP meeting soon. Ryan has had issues with homework since 1st grade. He gets extra time for testing but would love to see more time for homework. Last year we got a packet on Friday and handed in the work like everyone else. The extra time for homework decreased the time we did homework each night from 3 or 4 hours to 1.5 hours. Having the weekend allowed us to cut the work into small manageable chunks. I want him to be reevaluated by OT in school. I’d also like to see that recess and running are not taken away as punishment. Not having a chance to move sets Ryan up to fail in the afternoon.
I hope this very long letter did not scare you. In many ways Ryan is very typical, in many ways he is not. I am very available. I work out of the home two nights a week and I work from home most days. I live two blocks from the school and I can be around when I am needed. I am a huge tech person (ex-IT) and email works fine for communication. I will leave both my email and phone number at the end of the letter. Ryan’s father (name removed) works far away but he can also be available when needed.
Here is to a great school year!!!
Email – xxxx@xxxx.com
Phone – xxx-xxx-xxxx
Let hope this helps us start the year on the right foot. I have my fingers crossed.
