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January 28, 2003
FLOWERS FOR ALGERNON 01/27/03
Danielle posted on my board after my last entry about the behaviorist and I started thinking about what she asked. Why do all these people keep saying Jaida acts so normal? Why am I so adamant that she’s not? Is it because I remember how she used to be? Maybe, maybe not, it’s hard to say. I will admit that I can’t let go of what we went through to get to this point and I doubt I ever will. The delicate balance of her recovery can be very easy to maintain and also hard to keep at the same time.
When I think about Jaida’s situation, I’m always reminded of a short story that I read when I was in the eighth grade. It was called, Flowers for Algernon and it was about a man named Charlie with an extremely low IQ. He went to a lab and basically let himself be a human guinea pig for some scientists. Their first subject had been a mouse named Algernon. Somehow the scientists discovered a formula that made him smart and they used the same thing on Charlie. Suddenly, Charlie was a genius and he fell in love with a pretty female lab assistant. Life was great and Charlie couldn’t have been happier. Until, one day he woke up and his newfound knowledge was slowly slipping away. The scientists were baffled and Charlie was distraught over having to be ‘stupid’ again. The story ended with Charlie returning to his former IQ and the pretty assistant mourning the man he would never be. Every day, Charlie would visit Algernon and bring him flowers.
I guess I have an irrational fear that Jaida will have a similar regression unless I constantly acknowledge the fact that she is different. The fact that everybody keeps telling me she is so normal makes me doubt myself and her diagnosis constantly. There is even more pressure now that we are considering sending her to a public magnet school next fall. Do I tell her new teachers about the autism or wait for them to ask me about her personality quirks and occasional outrageous behavior? It’s a heavy load to bear and I have until September to decide. If I ever get the meeting I’ve requested to change her status on all official school system paperwork, I may not have to make that decision. Her diagnosis will be available to all that come in contact with her file.
FITTING IN AND STANDING OUT
On Saturday I took Jaida to a birthday party for a classmate. I welcome the opportunity to witness Jaida interacting with her peers and I rarely get the chance. The party was for a little girl named Katie and no boys were allowed. The cake was Barbie themed and there was a clown that made balloon animals and painted faces. The clown had several games and one of which was a Velcro ball game that would win the player a prize no matter where the ball landed. The clown instructed everyone to stand back and throw the ball to try and hit one of the circles on the chart. The other children understood her intentions perfectly. When it was Jaida’s turn, she walked up to the chart and lined her balls in a neat row. The clown tried to explain again but Jaida did it the same way on the next try. Jaida got a prize for being a good sport and then it was piñata time. The girls gave it their best shot but Katie’s Dad finally had to bust the dang thing. I swear it was indestructible. Since it was a special occasion and I didn’t have time to make Jaida some special cupcakes, I let her cheat on her diet and eat pizza and cake. I felt it was okay and I was prepared to deal with the end result. Besides, she was scheduled to visit her grandparents the next day. The bulk of it would be worn off by the time she got home the next night.
I can honestly say the subtle differences between Jaida and other children are easy to overlook if you don’t know anything about autism spectrum disorder. Every time I doubt myself, I remember all the internal problems that Jaida has and the medical evidence is hard to ignore.
A VISIT TO DR. CORBIER
We weren’t scheduled to see Dr. Corbier again until February 28 but there some things that needed to be addressed before then. Since as long as I can remember, Jaida has had a rash on her legs and thighs that will not clear up. Lately it has been more inflamed than ever and she scratches without realizing it. I tried all of Jarod’s eczema potions and they barely cleared it up. I think it may have something to do with yeast overgrowth in her intestinal tract but I wanted Dr. Corbier to look at it. When the rash is at its worst, she often complains of genital itching. I have also noticed a strong odor after she wears a pull-up all night that can’t be attributed to urine.
We saw Dr. Corbier today and he confirmed my suspicions. Like always he also had several other options to try before we see him in February. He asked about her behavior and I described the hyperactivity and the tantrums. He said that yeast can cause outbursts and getting it under control might help. We are starting with a product called Yeast Control before we pull out the big guns and go for Nystatin. We can also try a full system detox by letting Jaida soak in a bath containing two cups of Epsom salts for 45 minutes every night. Finally, after I have given each of those a week to work and if we see little or no improvement, I can get some special cod liver oil from Kirkman Labs that has vitamins added to help the essential fatty acids absorb better. Dr. Corbier also ordered blood tests to check Jaida’s copper, zinc and magnesium levels. If those are off, she may need yet another supplement.
After we talked about a zillion other things we may try in the future, I asked Dr. Corbier about Lambchop. I reminded him about Jarod’s sensory issues and speech delay and I asked if there was possibly a genetic link. I told him that we had not intended to have any more children for those reasons but God had other plans and we were having another baby in September. I stressed that I don’t believe a particular vaccine caused Jaida’s autism since she was different from other babies at one month old but I had been cautious with Jarod’s MMR vaccine. Dr. Corbier agreed that Lambchop should not get more than one vaccine at a time and never when s/he is sick or has a fever. He also added a high resolution chromosome screening to Jaida’s blood tests to check for a particular abnormality.
I still plan to talk to a genetic counselor when Dr. D refers me and I feel better about a lot of things after talking to Dr. Corbier today. The test results should be back by the time we see him in February and I’m anxious to see what they show. I whined to him about how all these people keep telling me she is so normal and how frustrating that is. He assured me that high-functioning autism spectrum disorder is the most difficult of all because of the way those children fit in. I feel that people assume Jaida is just being manipulative and playing us all. If they could see her all the time, it might make them understand.
Today for example, she was so sweet and after the appointment we went shopping. She had done so well at the lab during her blood draw, I told her we would do something fun. We looked at clothes in Gap Kids and The Children’s Place and I got some new pants that actually fit at Motherhood Maternity. (I can’t believe I need maternity pants already!) I bought her and Jarod a baseball cap in TCP and then we got sodas at Great American Cookies. Jaida asked why she couldn’t have a cookie and I tried to explain that they might make her sick. We usually blame Dr. Corbier for everything by saying he said she can’t have this or that. I get tired of being the bad guy all the time.
As soon as we got home, Jaida Hyde showed up. Almost immediately the back-talking and smart-mouthing started. As usual Steve was on the treadmill and there were several time-outs before his hour was up. I am going to the health food store tomorrow to get the Yeast Control and the first detox bath will be tomorrow night. I may let her get in my big tub so she can pretend to swim and the time will go by faster. I hope to God this works quickly.
CAN YOU EVER BE READY?
Another diary writer (thanks Allisun) gently suggested that I might benefit from some pre-natal testing to get an idea about Lambchop’s health. She pointed out that Steve’s initial reaction to another baby could have been based on his fear of the unknown. For this reason I have already decided to have the AFP test done this time. I know this test is notorious for false positives but I feel I have to do it. While I understand there is no test that can predict the future for certain, I think we need to prepare to some extent. Obviously, the results will have no bearing on my decision to continue the pregnancy but again, I think it’s the smart thing to do. As Allisun put it, Steve and I have to stand together. If we know what may lie ahead, it will help us stay strong for each other and our family.
ANOTHER NEW ALLERGY IS UNCOVERED 1/28/03
I fully intended to post this entry last night but Jarod started vomiting around 7:00. We thought maybe he had eaten too much throughout the day and his tummy was overly full. He had two frozen pancakes, a few servings of lima beans, some corn bread, a few bites of a fried chicken leg and two cups of jello. As soon as I bathed him, greased him up and put on his last pair of clean pajamas, guess what happened? Yep, he threw up again. This time he was in my bed. Yuck! At least we had the aubergine sheets on the bed since the light blue ones would have been permanently stained from the combination of strawberry jello and stomach acid. We stripped him again and changed the sheets and we proceeded with the regular bedtime routine.
As I was typing the last paragraph, I heard Jarod whine on the monitor. I sighed and waited for him to stop. He whined off and on for another few minutes and I thought he was going back to sleep. Then he started full out crying and I went to get him. When I tried to pick him up, his sleeve was wet. I turned on the lamp and realized he had thrown up again and the bed was a mess. I stripped him and the bed and took him to my bathroom. I found a pair of pajama pants that were too short and a stained undershirt. After I wiped him down, I took him to my bed with a surplus of old towels and washcloths. I thought he might have had a 24 hour stomach bug and we tried to comfort him as much as we could. He whined and tossed some more before he finally went to sleep.
This morning, he seemed better and I let him eat another pancake. Beth was scheduled to come today and I called to see how his session went. Mom said he did great and Beth was very proud of him. Mom informed me that Jarod helped her finish her breakfast of scrambled eggs and grits and she barely got any. We laughed and I ended the conversation. After Jarod woke up from his nap (an hour early) Mom called me back to say he was broken out in welts and scratching. I told her to give him some Benadryl and call me back if he wasn’t any better in 30 minutes. He also seemed to be scratching and coughing up a lot of stuff last night too. After his bath I saw a small red welt on his stomach that I wrote off as dry skin. I checked the ingredients on the frozen pancakes when I got home today and they contain egg whites and yolks. I think the two pancakes he had yesterday and the one today combined with more eggs triggered the reaction. When Jaida was about 15 months old, I gave her a small piece of scrambled egg and it came right back up after she swallowed it. I had been cautious to introduce eggs to Jarod and now I know we should probably avoid them altogether. Sigh…he was doing so well eating them for breakfast. I guess its back to the drawing board again.
I wanted to write about so many more things on the FIFTH page of this entry, but I’ll save that for next week. I have to sing the praises of Nature’s Plus Source of Life Prenatal vitamins. Trust me when I say, they rock!! See you next week.
Kim, Jaida, Jarod & Lambchop
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