Monday, August 26, 2013

When Wasn’t There Something Wrong?



When Wasn’t There Something Wrong?

 Sonya Knew her baby Charles was different from other babies from the beginning. He was a fussy eater. He was a baby that seemed to be sensitive to noise. He strained so bad that he had bright red blood on his rectum from constipation. Sonya knew but the Dr.argued with the her. Finally, the Dr. said to give baby Charles a glycerin suppository if Sonya thought he needed one.
Sonya saw Charles pinch himself to tight that he left red marks and splotches on his skin. When Charles was 13 months old and about 8 feet across the room, his dad would move his sippy cup about ¼ of an inch. Charles would come screaming back and move it back to the exact position he had it in. Sonya thought this was cute once , down right funny the second time but on the third time as distressing as it was to Charles and heartbreaking to her, she jumped all over Chris to stop it. 
Chris was in denial from the start about there being anything wrong. Yet, Sonya knew by mother instinct something was amiss. Now Charles always had been difficult with the feeding issues from the start. He may have further changed by a hospital stay at 6 months for RSV virus. 
As Charles grew, he acted as if he could not hear half the time. At church in the rooms where most toddlers sat, Charles would lay down on the floor and appear to be in his own world. He threw tantrums in the car. Sonya finally figured out these tantrums dealt with too loud a radio. For when Charles got older and with his limited language he stated, “Music Off!!”
Sonya sought help from the state program for early intervention. Her parents said she was worrying too much. Her pediatrician her to call the Texas Yellow Rose Program and Sonya did twice. She was told it was based on income. Which is totally misinformation that Sonya knows now is incorrect.
When Charles didn’t speak as he should, Sonya’s side of the family and Chris said Charles was just a late bloomer. Sonya felt more isolated and alone than ever. She had to deal with the tantrums. One day Charles ran around the house for almost 2 hours until he found and attained his favorite cup from the dishwasher. This was not just a run of the mill tantrum. He was agitated and almost in mental horror because he could not find his favorite cup.
Charles would line up cars and almost any kind of toy in rows. He would play for hours putting the same toys in the same box and dumping them right out again. Actually the box was an old container of handy wipes. 
Charles was tested at under 3 years of age for speech disorders. He was found to be significantly delayed. Chris fought with Sonya about the money issue. Insurance would not cover it. They both decided in the end that they could not afford $250 twice a week. Sonya did what she could as far as exercises she got off the internet. Sonya desired further testing. It would cost about $800 to $1000 dollars. At the time that was a huge amount of money. It would not be covered by the insurance either. Then the follow up care would not be covered most likely Chris pointed out. Both were torn on what to do . Sonya at least wanted to see what the recommendations would be. Chris said no. Sonya had little choice. She had chosen to work part time and stay at home the rest of the time to care for Charles.
Some joy did come their way. Sonya, being a weird bird, watched cable news information about community happenings and such. She found out that it was the duty of the school districts to test all delayed and special needs children age 3 to 21. The school district was a God send. Charles started preschool age 3. Chris had no objection because the program was free. Chris did have to swallow his pride when the testing revealed that Charles was very delayed in speech and other areas. Sonya was just thrilled to know that there were other kids like Charles that were still not potty trained. Sonya was not to blame completely.
Should Sonya reveal the worst of the worst? That Charles smeared feces all over stuff and quite often. Sonya opted not to share this. Sonya still felt like she was inadequate as a mother some how. However, the preschool testing and placement had made Sonya feel less of a failure as a mother. 
Charles was still sensitive the fireworks on the 4th of July. Yet, Chris insisted during the first 5 years of life that Charles be expected to be exposed to this. In-laws were the worst! Chris’s mother said such terrible things as, “He is deaf and dumb. What else is wrong with him? Charles’s doesn’t talk much.” 
Only and upbringing such as Sonya’s that has taught her to be civil kept her from yelling, “What the hell is f***** wrong with you? And who cares if it didn’t happen on your side of the family?”
It was almost a never ending challenge for Sonya to face her own family. They just said she worried too much! “Let Charles be a kid.” Her family said way too often. 
Greg, Sonya’s dad, had Charles pegged almost better than anyone! Greg was a retired teacher and army seargent‎ He kept saying that a lot of late talkers were highly intelligent. Plus some kids just choose not to talk. Sonya had done the tests of understanding her father suggested.
Sonya told Charles, “Take your shoes to your room.” Charles did it. Was Charles just being a willful child? Sonya knew in her heart that her father was somehow right partly. Further study revealed, just as her father had said, that Einstein was a late talker. Autism seemed to fit. Sonya’s brother, and engineer as well as tiptoe walker, had been a late talker. He seemed to fit a label of “Asperger’s”

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