Cooking School

Today Holland wanted to make homemade french fries. And of course, I was all for that. He got the bag of potatoes from the garage and asked if he could peel them. Of course - I assumed it would be his job. I told him to put them in cold water after peeling so they wouldn't turn brown. I left the kitchen to do something else and when I came back, this is what I found. Of course before I got mad at him, I took a picture. He peeled 20 potatoes! Hey -now we can put him to work on those Thanksgiving potatoes. It took several hours to actually cook them all. I'm crazy and cook them twice. They're nice and soft on the inside and crispy on the outside. Potato perfection.

Speech Therapy. Finally.

Yesterday I met with Holland's IEP team. A meeting was called when I told them I wanted to drop speech services. Too complicated, but basically it was scheduling conflict and too many activities (meaning doctor appointments!) for Holland. Last year we had the speech person come to our house and it worked out great. This year the speech person gave me times she was available, but they conflicted with our school schedule and the fact that I don't want to leave the house everyday.

After having a private speech therapist evaluate him, I decided 20 minutes a week was not worth the hassle and there were many other things I couldn't drop.

I was all ready for disagreements to this, so I came prepared with the report from the private speech therapist and also my monthly schedule for the last two months. The open times were again presented (nothing had changed from our last conversation. I still couldn't do it). I explained that I was caring for two children with heavy medical needs and could not be leaving the house any more or drag all three with me to some grade school just because she serviced other students there. Finally, the director of the school suggested dropping Fencing. I haven't wanted to do this. I want him to follow through with something. He really is not liking it, but if we stopped everything just because he was frustrated, he wouldn't learn anything. The speech lady had an open time during his class. Since he's not enjoying fencing, I'm pulling him out and he'll do speech for the first 20-25 minutes. Then I'll find something for us to do while we wait for my nephews to finish the fencing class.

So, it's a pretty good compromise. I won't have to drive anywhere else and he can get free services (although I don't know how much good they'll do).

The Mother of All Inventions

When I'm not being irritated by Holland's inventions, I am impressed by his creativity. I don't know how he comes up with the contraptions he does. He usually takes things apart to make new things. His recent projects have included a motor of a fan hooked up to be a weed eater. He's built a luge out of a giant box and a couple of skateboards. He's used his sister's outdoor car, a large golf umbrella a skateboard and some other odds and ends from the garage and built something to ride on that he could actually steer. It's hard not to get annoyed by all this building, especially when he takes things apart that are not broken. I give him lots of opportunities to build (I let him take apart a washing machine for pete's sake!). Finally last night, he built something that I think is my favorite invention so far.

I was getting ready for bed and as is my routine went in to check on all the kids. You know, making sure no one was hanging off a bed or had fallen asleep with a gameboy stuck to their face. I walked into Holland's room and ran into a piece of string tied to his doorknob and was immediately hit with a foam dart. This ingenious inventor had rigged some of my sewing thread to his doorknob and attached it to his dresser and when it was tripped, it fired this foam dart. He asked me in the morning if I liked his trap. I told him I thought it was brilliant. That's when he told me it was actually for his sister!

Now if we could just harness this power for good.....

Yea for the OT

Another busy day. Today we had Holland's OT appointment after fencing. We did this last week and it was a disaster. He was literally bouncing off the walls by the time we got to the OT. He could not pay attention and his body was bumping into everything. He is really not wanting to do fencing. It's hard to know how far to push him. He refuses everything we offer. On Mondays I pick up Romania from the bus stop and we drive up to meet Super Hero in Portland. Holland goes with him and I take Romania to handbell practice. He kept crying saying he didn't want to go and wanted me to page dad and tell him I said it was okay not to go play at the club. I told him that Mondays were his night with dad and I didn't care what they did, but I was still dropping him off. I emailed dad and told him this. He needed to figure out what to do - I didn't care if they sat in the parking lot - just don't involve me. So getting him to do fencing has not been fun. He has working memory deficits that make it difficult for him to remember a sequence of things. He is also not very aware of what his body is doing and as a result got yelled at two weeks ago in fencing class for being a bit out of control. He did not want to go today, but I said we were still picking up his cousins and he needed to at least try. The first 30 minutes of the class are spent warming up. The kids play games and today the instructor asked which parents wanted to play against the kids. Everyone just sat there, so I jumped down off the stage and joined for a game of dodgeball with 20 kids. Eventually some other parents joined and it was fun. My legs still hurt from that. I consider it my exercise for the week.

After returning my nephews to their house and picking up Egypt, we drove straight up to Portland for the OT session. I was worried that it would be a repeat of last week. He fell asleep in the car ride up. Never a good sign. But he seemed alert when we went in and had many things to share with Camille. I sat in for the first 20 minutes and he did an awesome job listening and trying out the exercises. Some of them are very difficult for him because they require some upper body strength. He didn't complain once and each time Camille asked him to do it again, he did. I left for a bit to talk to the speech path about possible services and to ask her opinion of how to deal with this school situation. She has never worked in the school system but we talked with a PT who has been in public school and told me that I needed to lay out the reasons why it wouldn't work and them tell them "these are the circumstances that I will accept your services." I loved that. I want her to come with me! They keep saying ' oh you're in charge. Whatever the parent wants, it's your decision.' That's a bunch of hooey. What happens when you disagree with them is they bring in a table full of people all on their side and you show up bombarded with reasons why you need to listen to them. The wording she gave me was perfect for retaining control of Holland's education. If they're not going to provide speech by coming to our house, then I'm not going to accept their services. I would love to not have to pay for something, but it doesn't look like we'll make any improvements because the school speech path is only looking at the incorrect way he's making the words and not the underlying problem.

So say a little prayer on Thursday when I go in to face all the big wigs of the school district. After all, I'm just a mom who has no idea what the best thing for her son is (insert sarcasm if you didn't already).

3 Month Eye Check

I took Egypt to her 3 month eye check today. There was no real noticeable vision change (in my estimation, she missed about half of the pictures/letters). Doctor said we could wait three months or get glasses right now. Egypt was so excited and of course wanted to go pick out pink frames! I told her we would look, but probably not buy. When I got up to the window to schedule the next appointment, the woman says "that will be $44 please." I told her I already paid the co-pay. She told me that my insurance viewed the need for glasses as a 'medical' condition. Um. Hello? How is needing glasses not a vision reason? They are billing the need for glasses from the JRA, which in their eyes is a medical condition. I doubt that the JRA caused the near-sightedness, so it's not right that they bill it under medical instead of vision. She went back and asked the doctor if they could change it and he dropped the fee.

Then, since I only had Egypt with me, we drove to Costco and picked out two frames, which was cheaper than the FRAMES ONLY at the eye clinic! Crazy. She was a little sad leaving without the glasses. She was expecting to be able to walk out of there with new glasses. She informed me two weeks was way too long to wait.

I also had a bit of good news arrive in the mail the other day. About a month ago I applied for care through the local Shriner's Hospital. They do orthopedic care, burn care, spinal cord rehab and cleft lip/palate care. I got a letter saying that my application had been approved and our appointment is scheduled for mid-December. I really hope that they will be able to help us out. Holland's care is costing so much and Egypt's physical therapy, cortisone injections and shoe lifts are getting costly as well. Now I just have to call all her caregivers and ask that they send over her records.

On a side note, I called Holland's case manager for his IEP. I told her I needed to drop the speech goals. The times the speech person has available either don't work, or use up too much time (2 1/2 hours for a 20 minute appointment. Drive time, plus waiting until Romania gets out of school to drive him home). The case manager is calling a meeting to discuss the "inconvenient scheduling times". I told her that I do plenty of inconvenient things, but it's not just about the scheduling issue. There are too many transitions in Holland's school days. He has weekly doctor appointments, monthly doctor appointments, two outside the home classes, Egypt's doctor appointments, and oh yeah, actual school! We have to meet with our Educational Specialist once a week and then the added speech on top of that. Not only am I feeling overwhelmed with the schedule we're on, but I'm dealing with so many behavior issues right now. I think I'm going to type up my schedule for the next three months so this case manager can see that it's not just about me saying this is too much trouble. If she could only walk in my shoes for a week, I'm sure she'd sing a different tune. Maybe I'll just tell her to read my blog.