Middle Child is being considered to be the 2007 sponsored child for a very well known local charity event. This is the write up I sent in to the committee. It has been narrowed down to three children, any prayers you can spare are appreciated.
Writing this was very therapeutic, and seeing as therapy is what this blog has been for me, I thought it appropriate to share his story with you.
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To Whom It May Concern,
I am writing to tell you a little bit about my son, A, who is 6 years old and diagnosed with autism.
When he was born, A weighed in at just under 8 pounds. By all accounts, he was a beautiful baby. Perfectly round head, chubby cheeks, rosy skin, and a pleasant disposition that drew in everyone around him. He was quite the little porker, too; he started gaining weight before we even left the hospital, and by 8 months of age had outgrown his infant car seat…a seat that should have lasted him at least a year.
“You need to cut back on his formula,” the doctor would say. “He’s never going to sit up or crawl if he keeps gaining weight like this.” Granted, he did bear a striking resemblance to a bowling ball, but he had reflux and it was very difficult to determine exactly how much he was digesting, so we couldn’t worry about it. In fact, he sat up and crawled right on schedule, which we took great pleasure rubbing in the good doctor’s face. He continued to hit the milestones just like all the other babies…walking, talking, pointing, laughing…and then one day it just stopped.
A’s regression started with his speech. By the time he was 18 months old, the few words he had picked up disappeared. He stopped looking us in the eye, and started obsessively lining up his toys. He would run in circles, always counter-clockwise, for a half hour at a time. The happy and social baby boy that we loved more than anything else in the world was slipping away before our very eyes, and nothing we did seemed to make a difference. It was terrifying.
We looked to our pediatrician. We asked if we should be worried, and what we should do. He was of the opinion that it was “second child syndrome,” and that second children are often speech delayed when they have a chatty older sibling. He assured us that A would develop at his own pace, and that we shouldn’t worry. We believed him, and precious months were squandered while we waited for A to “snap out of it.” That wondrous “snap” never came.
By the time he was 2, we were adamant that something was wrong, and requested a referral for an early intervention evaluation. He was deemed eligible for services, and started speech therapy when he was 27 months old. Several months went by, during which time we researched speech delay and its causes. One word kept popping up in the course of this research: autism.
Autism scared us to death. Like many people, all we knew of autism was Rain Man. No, no, that couldn’t be what was wrong. Not our child. No.
A’s therapists danced around the subject.
We’re not doctors, we don’t diagnose. We were on a waiting list to see the only pediatric neurologist in the immediate area, and our appointment was months off. Finally, his caseworker gave us her professional opinion of what was wrong with A.
“It could be mild autism. Something called Pervasive Developmental Disorder.”
Hearing those words associated with our A was devastating, but we felt better to be able to put a label on it. Armed with this information, we pored over medical journals and bought books. All of A’s therapists said that he was on the milder end of the spectrum, and with therapy, he could be in a normal kindergarten class and could live a normal life. We were so relieved! It wasn’t Rain Man, it was mild, and we felt like we could fix it. He wouldn’t be picked on, he would speak eventually, and he would go to college and get married and be on his own some day. We thanked God. We thought it would be okay.
A has been fortunate. He’s had wonderful teachers and has come a long way with his therapy. His tantrums decreased, and he learned to use pictures to communicate. His progress has been slow…slower than we expected…but it’s been steady, and he continues to surprise us every day.
Sadly, he is still largely non-verbal, and cries with frustration when we can’t understand what he’s trying to say. He gets very upset when he sees his younger brother talking in sentences. He is so intelligent, yet can’t express it effectively. We try to imagine what it would be like to not be able to talk, and our hearts just ache for him. How awful it must be for him to be so misunderstood.
Overall, A is healthy and happy in his own little world, but our biggest concerns for him thus far have been safety-related. He’s managed to circumvent almost every bit of childproofing that we have in the house. He knows how to work all of the locks, and has managed to escape more times than we care to admit. We live on a very busy street, and he’s even been known to climb out the window if he can’t get out the door (thank heavens we live in a ranch!). On one particularly disturbing occasion, he walked out of the house early on a Sunday morning (in his diaper no less) to play in the puddles in the middle of the street, only to have people drive around him rather than stop to make sure he was ok.
Recently I have come across more and more news stories about autistic children wandering off and being abused, injured, exploited, and even killed. As our son grows older, the danger actually increases because his desire for independence has started to quickly surpass his own abilities to control his actions and impulses. Finding a way for him to explore a little more independence while remaining safe has become a #1 priority for our family.
We find it sad that our culture has changed so much that nobody watches out for anybody else anymore. We recognize our own weaknesses as humans, and know that we can’t sleep with one eye open for the rest of our lives. We realize that A needs more supervision and protection than we’ve been able to provide, and have come upon a solution of sorts.
In recent years, several organizations have taken to training service dogs specifically for children with autism. Generally, autistic children have problems recognizing danger, and will walk right into hazardous situations if left to their own devices. A service dog would not only help us to keep tabs on A, but would also help him in his social and emotional development. It would enable him to become more independent, secure, and confident in his daily activities. Such an animal generally costs upwards of $13,000, a sum of money that is simply too much of a burden for your average working family. For our son, we are determined to find a way.
We’ve recently come to the painful realization that A will probably never be completely mainstreamed in his schooling, as was the original hope. He may never go to college and get married and have a family of his own; in fact, he may never leave home. We’ve had to let go of all the normal expectations that parents have of their children, and learned to live in the moment. Most parents of 1st graders celebrate grades on a report card, a Little League home run, a performance in a school play…we celebrate when he puts his shoes on the right feet and buttons up his own coat. We rejoice when he calls us Mommy & Daddy, something he was unable to do until just this year. We marvel at his bubble-blowing talents. To us, he is perfect just the way he is.
A fund-raising effort would not only help A to get a service dog to call his own, but would also enable our family to explore the possibilities of additional therapy and high-tech equipment that would make it easier for him to communicate. We look to your organization to partner with us in making it possible for our child to live a fuller and more productive life.
Despite his disability, A is bright, loving, creative, and sensitive, and he teaches us every day that it’s best to not to concentrate on why you can’t, but on finding ways that you can.
Thank you for your time. Please let us know if any further information is needed. No matter who you choose to sponsor with your fundraising efforts this coming year, we wish you the best of luck and commend your organization for all the good that it does. You truly do make a difference.
Sincerely,
K & Family
