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December 4, 2002
*Be forewarned, my hormones are all over the place and this entry may be too.
12/04/02 THE SCHOOL SYSTEM SAGA CONTINUES
If you recall, I mentioned a while back that a school system representative told me Jaida could have therapy. I made several attempts to pin them down on a date for a new IEP meeting. I’ve gotten no results from my letters and phone calls. I contacted DOnna at SEAC again. She said she would help me write a letter to the state director of special ed (the couty personnel's boss) detailing what feels like blatant ignoring. Unfortunately, Donna had to go out of town and we had to postpone the letter. I decided to call Mrs. Felder, the head of autism services at the state department of education. After I described my situation, she sighed heavily and promised she would fax them a letter right away. Her phone call last time had gotten results, so I was hopeful. Mrs. Felder kept her promise.
A short time later, I got a call from another person at the school system that informed me the lady I spoke with before was on jury duty. After telling her Jaida’s history and explaining all we had done, this new woman was now up to date. Sometimes, I feel like a small storm cloud follows me where ever I go. Sort of the way a cloud of dust followed Pig Pen on the Peanuts all the time. It’s not like I'm asking the county to fund a complete home program with Lovaas therapy or Applied Behavior Analysis and full time student therapists. I just want speech and language therapy, two times a week. Heaven help me.
I can't decide if I should tell them Jaida has been in private therapy or not. In a way, I guess I should so that we can build on what Roan's accomplished. Jaida is finally getting the concept that things can be in the same category, but look different. Roan is clever, I'll give her that. She came up with the idea to use toys to make her point. She had a small chicken and a large chicken. She kept asking Jaida how the animals were the same. Jaida got that part right every time, "This is a chicken, and this is a chicken." When Roan asked her how they were different, she was silent. It's strange how we take things for granted when they come so easily. I was screaming inside my head, "one is big and the other is little!" It never occured to me that we would have to teach Jaida all these categories before we could begin work on proper sentence structure. Now I know why Roan has a masters degree. It has to take years to learn how to break this stuff down so you can get inside the child's mind and teach it in a way they can understand.
Last week, we worked on what made things the same. It took a while, but she was finally able to tell Roan that the small wooden blocks were the same because they were both green. It's amazing how Jaida can remember the names of exotic things like gazelles, species of tropical fish and ostriches. But a simple question about a size difference can stump her into embarrassed silence. Roan told me this process wouldn't happen overnight but I had no idea what kind of time frame to expect. If I had to guess, I would say this might take months. The mind of an autistic child is truly an enigma.
THE LANGUAGE EXPLOSION
It seems all Jarod needed was some coaching to begin repeating words. Since he started therapy, his vocabulary has doubled. He attempts to communicate things to us that he never did before. When he fell the other night, he went to Steve and kept holding up his hand. He clearly said ‘hand’ several times in the midst of come other gibberish while pointing to the place where he fell down. Another night, he bumped his head and he kept repeating ‘head’ while pointing to the place where he bumped it. Beth is more and more excited each week when he delights her by saying something new during her visit. We finally got him to make the sign for ‘thank you’ and we make him do it regularly. Still no luck with imitating sounds, but I got out Jaida’s old See-n-Says with the barn animals and other animals. I made sure to try and mimic each sound so Jarod would do it, but he just laughs at mommy's antics. We’ll just have to keep trying.
SOME MOTHERS ARE NATURAL AND SOME HAVE TO GROW INTO IT
Do you ever have moments where you sit back and analyze yourself? I always do that when I’m hormonal. I never fail to find something to beat myself up about during these self-therapy sessions and this month was no different. I closely examined my relationship with Jaida. I think my doggedness to make sure she gets what the county school system owes her is my feeble attempt to repair the way our mother/daughter relationship turned out. Isn’t it ironic how you never know you suck at a job until it’s too late?
Jaida was not an easy baby. To be honest, that is a gloss over of the truth. She cried A LOT and seemed to barely tolerate my affection. When our nursing partnership proved to be a failure, rejection was the best way I could describe how I felt. I thought it was all my fault. After all, Steve complained about my lack of affection towards him all the time. How could I expect my own child to be any different than her mother, I did provide half the DNA. As Jaida grew and it became apparent that she needed me about as much as a dog needs fleas, my heart hardened ever so slightly towards her. She appeared to know what affection was, as she gave Nana (my mom) lots of it. She just had no use for me. It sounds stupid and immature, but I was 24 at the time and motherhood had been a huge lesson for me so far.
When I learned I was having a daughter, all these sappy fantasies filled my head. The reality choked the life out of those fantasies the way weeds overtake a flower bed. I listened to the way my friends and family described the sweet things their little girls did and I was so envious. Where was my buddy? What happened to Jaida and I being inseparable? Even my mom commented on how we seemed to act indifferent to each other. She talked about how she and I had been two peas in a pod. I knew she was right, but how could I fix it? I tried “girl time” where Jaida and I would spend Saturdays together running errands and shopping. I eagerly waited for the fun to begin. It never did.
Jaida was locked in a world that was as strange to us as ours was to her. She did not speak or even make her needs known. I can’t imagine how I didn’t see it. How could we have tea parties together with her dolls? Jaida wouldn’t sit in a chair for more than five seconds, let alone play with a doll. In fact, Jaida didn’t really play at all. Years later, I would recognize this symptom (along with several others) on an autism website: lack of imaginative play. All the signs were there, but nobody was asking the questions. At age 2 ½, Jaida would rather eat soap suds from the kitchen sink than color or work on a simple puzzle. She could run circles around the kitchen table for an hour before we finally made her stop. Her obsession with water drove her to dunk toys in the toilet and fling the soaking objects until the bathroom resembled a water park. She hummed and stomped her feet constantly, as if to drown out the sound of her surroundings.
I silently mourned the baby girl that I was losing with each passing day. My attempts to engage her were futile. She had no interest in anything except hours of TV and endless cups of juice. I felt for some time that what I went through months after her birth was post-partum depression. Now I’m more inclined to think it was grief over the child I was trying so desperately to love, but found myself incapable of loving on some days. The shame, anger and self-hatred are what drove me into depression. How could I feel this way about my baby? A child is God’s most precious gift and I was not the least bit appreciative. What kind of monster was I? Unfortunately, I have only begun to deal with these feelings in the last year. A part of me retreats whenever I think about it and I force myself to press on. I owe my daughter the best mother she could possibly have and I’m trying to be that now with every ounce of determination in me. I can’t help that I was young and ignorant during her early years that is the past. Now that we have found the proper ways to help her I can only try to nurture the phenomenal daughter she has become.
Last night and again this evening in therapy, I felt something break inside me. It was as if the years of pain and frustration were gone and my heart opened up to Jaida again. My love for her burned fiercely and threatened to engulf me in this huge combustion of emotion. I was nearly in tears as I sat watching my baby zip through Roan’s questions like a whiz kid. She was answering cooperatively and most importantly, her answers were correct and she was using descriptive words in the right context. I could see that the dietary changes, vitamins and special supplements were worth it. We’ve found the keys to unlock the prison door. I’m just honored and privileged to be witnessing this miracle. God gave me a second chance with my daughter and I will not waste it.
Until next week,
Kim, Jaida & Jarod
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