ORIGINALLY POSTED: APRIL 6, 2012
(Writer’s note: I’ve been sitting on this one all week because I wanted to put pictures with it. It made more sense since I know I have pictures of her lined up toys and pictures of the cake WE put on her nose at her first birthday party. It ended up looking like a little pink icing rose on the tip of her nose. Oh well, I haven’t found them, but maybe when I do I’ll upload them as an amendment to this entry. Here’s day 6, sorry my OCD got the better of me for so long. :} )
April 6th: Autism has taught me to trust my instincts as a mother.
When K was an infant, she was an easy baby. She took her bottles, liked to have her diaper changed, and was content just to sit and look around the room. She also had to take her formula cold, her bottled breast milk warm, her diaper wasn’t ever allowed to have a drop of anything in it before she would through a fit and she hated to be held or cuddled. This was how our journey with autism started. At weeks old, she didn’t make eye contact the way normal newborns do. She never looked at my face while she was nursing and her bottles had to be prepared a certain way. Warming the formula meant she wouldn’t take the bottle. Not warming the bottled breast milk meant the same. She was very picky in that sense much to the amusement of some and the frustration of a new mom struggling to bond with her baby. As she got big enough for solid foods, she would first eat nearly anything. Mushed chicken baby food, most fruits and vegetables and loved sweet potatoes. Then things slowly started to change. She wouldn’t eat the meats anymore. Not one of them! Then she would only eat foods that were orange. I would mix the green beans, peas, and chicken into sweet potatoes, peaches and corn in an attempt to make sure she was getting the nutrients she needed. After a few weeks, she wouldn’t eat anything unless it was green, so I took to mixing the sweet potatoes she once loved, along with corn, peaches, and most other foods, into the peas (which had become a favorite suddenly), green beans and mixed vegetables baby foods. After a while, it was a fight to get her to eat much at all.
Her first birthday came around and she picked the sprinkles off her cake one at a time, carefully avoiding getting icing on her hands. It was kinda cute, but I was still waiting for my baby to act like the other babies. Before I was married, I was studying to be an elementary school teacher. I had taken dozens of classes in high school on child development as part of the pre-teacher licensing and to get into the education program at the local college. I knew how children were supposed to grow. I knew how babies were supposed to behave and which milestones they were supposed to hit. K just wasn’t hitting them. Physically, there was nothing wrong with her. She walked before she learned to crawl and was running just a few months after her first birthday. But she wasn’t talking, had a “you can go mom” attitude when it came to Sunday school, and was highly uncooperative at meal times. By 18 months, she still wasn’t talking and wasn’t making gestures to communicate needs or desires. She still mostly preferred to be left alone and some things became OCD-like. On one occasion, we were playing together in her room. She had found a ball under the changing table and she carried it around most of the day. At bedtime, hours later, we were picking up the toys. She found the same ball, this time lying next to the toy box. She picked it up and looked at it. I told her to “put it away” thinking she would simply place it in the toy box. She was standing right next to it, it was logical for her to just place it in and move on. Only… She didn’t. She walked across the room and got low to the floor and put the ball back under the changing table where she had picked it up that morning. She would line her puzzle pieces up across the floor and leave them there. If any of us moved them, she would become anxious and aggressive. The fits she had when we moved them caused us to only pick them up when she was napping or after bedtime.
We brought it up with her doctor many times. When she wasn’t talking at one, “all kids are different”. When she wasn’t talking at 2, “She may just be a late talker”. When she wasn’t talking at 3, they checked her hearing and sent us on our way. She was three and a half when we had her evaluated by a speech pathologist at the local elementary school. Using mostly flash cards and “what sound does this letter make?” type questions, she got a score of 37. A score of 40 would have qualified her for speech therapy.
I should have trusted my instincts, I should have pressed harder, I should have advocated for my baby girl. I didn’t know any better and literally everyone was telling us “she’d grow out of it”. When she was two, I reconnected with a friend from high school. Mel also had a two year old; his name is “T”. When T was about 30 months old, when K was 24 months old, T was diagnosed with autism. At that point, I started to ask Mel about things he did or didn’t do. I was concerned, but couldn’t bring myself to use the word “autism” when it came to talking with the doctors. It wasn’t that I was afraid of the diagnosis. I could clearly see something wasn’t right, I think it was more of ignorance. I didn’t really know what autism was. I had never heard the word before. I didn’t know what that would mean for K, both now and in the future. I desperately wanted to believe what everyone said… That she would, someday, grow out of it. She never did. She was nearly four when she started to talk sentences, but even those were fragmented and mumbled, the way a baby talks when they first start using words. In the past two years, her speech has taken off, but when she’s anxious or upset, she still loses the ability to communicate effectively. Things come out in the wrong order or the words just don’t make sense, as if her brain is fighting to make her mouth speak faster and her mouth is skipping over certain words to keep up.
LJ had his first evaluation last fall. A score of 16 was the cut off in three areas… He scored 17 in all of them. He toe walks to the point of wearing out his shoes. His speech is delayed and at times, his eye contact is awkward. At two, we are seeing a few signs that K exhibited at his age. I will fight for his right to early intervention. I will push, argue and go “to the mattresses” for him. His sister taught me how. I don’t know if I failed her. Sometimes I feel like I have. I feel like I should have known sooner. I should have pushed harder. I should have been louder, more firm. I should not have accepted “she’ll grow out of it”, but I’m also learning from my mistakes. She’s receiving the help she needs now, at age 6, and she’s thriving. She is a joy to her teachers, a helper to her friends, and loves everybody. Because of her, her brother will get help much earlier than she did. She has taught me what it means to advocate for one’s child, something no parenting book or website could ever teach.
K and LJ, best friends for life!