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December 20, 2002
12/20/02 LET ME GET YOU UP TO SPEED
The speech therapist from the school system called to set up the IEP meeting on Monday. We chose to meet at the elementary school we are zoned for and where Jaida will receive therapy on Thursday at 9:15. She said she was going to call and see if that time was fine with Sherry from the preschool program. I immediately called Donna at SEAC to see if she could make it and I was relieved when she said yes. Roan had not returned the phone calls the attorney made to her, so I decided to wait until our session on Tuesday to ask her to come.
The attorney suggested the following things be in my list of requests:
1. Reimbursement for the private therapy costs and the evaluation fees
2. Some type of plan to deal with the behavioral issues since it was not addressed in the original IEP
3. Either a placement at a preschool in the system that can handle all her needs or making them reimburse me and pay part or all of her tuition for Montessori. (They should have offered me a placement at her original IEP meeting.)
4. I wanted to change Jaida’s classification from developmental delay to autistic spectrum disorder. I feel like I was tricked into using the DD label.
Speaking of behavioral issues, I witnessed Jaida pointing her finger in Ms. Amelia's face and yelling at her when I went to pick her up on Monday. Apparently, Ms. Amelia was correcting another student and when that child got upset, Jaida took it upon herself to ‘correct’ Ms. Amelia. I stormed out to the playground and made her apologize immediately. I later discovered that the French's Chili-O mix I had been using has wheat flour in it and that may account for her outburst in the store on Sunday and her erratic actions of late. When she wanted to eat the chili I made, I thought it was safe. I assumed the Chili-O was just spices. You know what they say about making assumptions. But I’m only human and not above making mistakes.
When we got to therapy on Tuesday, it turned out that Roan's youngest was home from college and she was sick. They had been to the doctor three times and she was still no better. I had sent Roan a Christmas card and she was so touched by the card and my message. I wanted her to know what a blessing she has been to us since we met her and how much she has touched our lives. I also included a family picture and one of just the kids. She gave Jaida a Father Christmas tree ornament with Christmas 2002 on the back. She had her house all decorated and it was gorgeous! The tree had to be nine feet tall. Jaida spotted a panda on the tree and Roan told her the story of where it came from and let her use it during the session when they talked about animals. Jaida did so well and I was so proud of her. She was even saying, "These are animals, but the pig is a farm animal." Roan looked like she was going to cry from happiness. She was saying "YAY!!" and pumping her fist, her excitement was tangible. When the school system takes over with therapy I am going to really miss her and I know she'll miss us. I really hope we can keep in touch.
ANOTHER CLOSE CALL
I also had a hair appointment last night and I *had* to go. I needed a relaxer touch-up so bad; my roots looked like Br’er Rabbit's briar patch. I was sitting under the dryer making some notes from my Wrightslaw articles when I felt a tap on my shoulder. I looked up to see my MIL standing there. She said Jarod had gotten into something and his lips were swelling, Steve wanted me to call home to make sure he had given Jarod enough Benadryl. My in-laws live about 5 minutes from the salon and it's in a heavily wooded area that blocks my cell phone signal when I’m inside the building sometimes. Steve hadn't been able to find the salon's phone number.
I used the salon’s phone and when Steve answered, he said Jarod had tried to eat a piece of flounder off his plate. As soon as the fish touched his lip, he started crying and he wanted to get down off Steve’s lap. Jarod went into the den and sat with Mom on the sofa. It was not TWO minutes later and his lips were about three times their normal size! Welts had begun to spread outward from his mouth to his cheeks. Mom yelled for Steve and they found the Benadryl. They gave him 1/2 a teaspoon but Steve didn't know if that was enough and that's when he tried to call me. I told him to give him another 1/4 teaspoon and since he was babbling like normal I stayed just long enough to get my hair dry and give my stylist his rollers back.
When I got home, Jarod’s lips were still swollen so I called our doctor and asked if he thought I should give Jarod the leftover steroids I had from his peanut butter reaction last month. Dr. Simon agreed and he said to give him 1 ½ teaspoons and another ½ teaspoon of Benadryl. He also said to continue the Benadryl for the next few days. Soon, Jarod was asleep from all the medicine and I talked to Steve and Mom about what happened. Mom was so freaked out and I know it was probably a scary sight. From the way they described it to me, his lips swelled more than they did from the peanut butter. I knew we would have to watch out for shellfish and other nuts, but I never thought a tiny taste of flounder would cause a reaction like that. I checked the ingredients (it's the pre-cooked breaded kind from Sam's Club) to see what else was in it. Other than eggs, nothing else in it could have caused a reaction. Steve said he did have a little mustard on the fish but I don’t think that was it.
HE EATS, HE SPEAKS!
I think I said before that Jarod was using more words, but he's used at least one new word a day lately. I hate it when other parents pretend their kids are so smart they could rewrite the laws of physics, but Jarod really is smart. When he wants us to do something, he automatically makes the sign for please now. He brought me a knee pad (for skating) that was left in Jaida's room from when my niece slept there years ago and he wanted it on his leg. He held up his leg and said, "Leh, leh." I looked down at him and he was already making the sign for please and nodding his head. When I gave him something one night, I heard him say, "Tank u." I had to turn around and look at Mom to see if she heard it too. She said, "Oh, I forgot to tell you he started saying that. He only does it when he wants to." He stopped making the sign for thank you at all. As far as I can remember, he now says off, on, li-li (light), ont dis (I want this), pi me up, onna gi down (I want to get down) and a few others I’m forgetting.
Jarod has not had a bottle since last Thursday. The only problem is he still won’t drink the Pediasure from a cup and he only eats Tostitos corn chips. At first, he was eating things like Mom’s raisin bran cereal, bacon, Crowder peas, corn bread and jello. Due to the sudden influx of solid food, his bowels went on strike and he went five days with no BM. I took him to the doctor on Tuesday to make sure he wasn’t battling an ear infection or something. Dr. Simon suggested Milk of Magnesia but I didn’t want to use medicine. A few of the diary writers gave me some great ideas and I went to the store for prunes, prune juice and some other snack foods for Jarod to nibble on.
We passed a display of Jarod’s all-time favorite: Tostitos. Jarod pointed and kept whining, “Ont dis, ont dis.” I had assumed Jarod was intolerant to corn because the chips always gave him the runs. We also learned that Jarod likes popcorn and he was munching on some when Dr. Simon came into the room. He told me that popcorn was good for constipation because it has so much fiber. Jarod ate a whole bag over two days and still no BM. Anyway, I bought a bag of the chips thinking it might work better than the prunes. I had to open them right there in the store. I know it’s stealing but I had to have some quiet, whining is like nails on a chalk board to me. I swear the kid ate corn chips for four hours; he started in the store and kept on until his bedtime. We put them in a small sandwich bag and he came to us whenever it was empty. I had to hide the bag but he kept pointing at the counter begging for more. Now that’s all he will eat. We won’t see Jennifer again until the 30th. She’s gonna love this.
THE IEP MEETING
Where do I start? First of all, the higher-ups decided to dump me and all my requests right into the speech therapists lap. She seems like a nice person and a very capable and astute speech therapist. However, writing an IEP is not her job. There was no representative from Special Ed and therefore, she could only discuss her role and my goal for Jaida. Suzanne got the principal of the school where Jaida will receive services to sit in at the last minute. Legally, we can’t write an IEP without an LEA or local education agency representative. I was frustrated, tired and just really sick of all the crap they’ve put us through. I went ahead and did the speech portion of the IEP and I signed it, but I put ‘as a 1st draft’ after my name. That way, they can’t come back and say I wasn’t there or what we wrote today is set in stone.
To her credit, Suzanne seems really awesome. She wrote some goals that were better than what I came up with. She just read Roan’s report and the independent eval report and put together a close synopsis of Jaida’s strengths and weaknesses. I was very impressed with her. Even if she couldn’t say she thought I was being shafted, her body language and attitude did. She tried to schedule a meeting with the powers that be before I left but the person she needed was out sick. Tomorrow is the last day for them so I’m sure we won’t get this meeting set up before the New Year.
If I were a drinker I’d be sloshed right now. The strongest thing I drink is a cold Pepsi and I’ve had that already. It was just what I needed to help me relax. I am physically and emotionally drained. I’ve been eating too much of the wrong stuff and not taking care of my needs. I got some excellent tips from the Wrightslaw website about coping and I’ll include those in my New Year’s entry. I have made a vow not to do anything related to this situation until after Christmas day at the earliest. I am officially on an advocacy vacation. I will be scheduling a pedicure and hell, maybe even a massage as soon as my favorite spa opens tomorrow. I want to be Kim for a while and not Mommy, wife, daughter or employee. I plan on having a stress free holiday if at all possible.
Merry Christmas to you and yours,
Kim, Jaida and Jarod
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