Acceptance of difference

May 8, 10:29 AMSpecial Needs Kids ExaminerHeather Sedlock

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I am the mother of two special needs children, and I wish I knew the magic moment when my children's so-called disabilities stopped being an issue for me. However, from my experience I have a feeling that for all parents of special needs children there isn't any one magic moment but months and years of time overriding this dilemma and denial.

My youngest son, Brandon, was about three months old when I realized something was different about him. It caused me great worry and I had spent hours trying to figure out what it was when my brother was over visiting and clapping his hands above Brandon, who was lying in his crib. I watched intently as Brandon did not react despite my brother's bringing his hands closer and closer to Brandon's face. Brandon did not focus on the hands or seem to notice the sound either. My brother turned to me and asked, "Is he blind or deaf?"

It was then that I realized the problem. Brandon never made eye contact with anyone and did not seem interested in anything that went on around him. It was if he was in his own world. Later that same day, I took him to his pediatrician, who referred us to the nearest children's hospital for eye exams. Through a battery of tests we learned that his sight was fine. Through a battery of other tests we learned his hearing was fine. I decided Brandon was just "different" and life went on.

Still Brandon continued to be delayed in myriad areas including cooing, crawling, sitting up, standing and walking. In fact, Brandon never crawled or cooed. He didn't eat table food until he was five years old. However, he had amazing gifts. Before he could speak coherently, he would read. He would read signs, magazines, and anything put in front of him. To communicate with others, he'd repeat words he'd found in commercials. For instance, if he wished to have juice, he'd exclaim "100% juice for 100% kids!" It has been an interesting life to state the obvious.

Eventually Brandon was officially diagnosed with Pervasive Developmental Disorder/Not Otherwise Specified in 2006, at age 4. PDD/NOS is a type of autism. It is the catch-all for those who are autistic but do not fit into any of the other categories. Children with PDD/NOS are usually more social or have other high-functioning qualities. It is suspected that Brandon has Asperger's; however, he does not have enough "symptoms" to fit completely into that category. It took me three months to gather the strength to call for an appointment to have him tested. I did not want him to be autistic. I did not want another child with special needs.

"Children who suffer from autism display an extreme preoccupation with their own thoughts, fantasies and private impulses" explained D. Coon is Essentials of Psychology (1). It was not the actual diagnosis of autism that concerned me so much. It didn't matter what the problem was. My issue was that there was a problem at all! All parents want healthy children. Many times we say to others when asked if we want a boy or girl " As long as he or she is healthy..." This can set one up for denial when his or her child is not "healthy."

For me, when the pediatrician asked if she could refer Brandon to an early intervention agency, I did not see why the agency would need to come out but I did not deny its professionals the opportunity. I felt that I would be able to show that while Brandon was delayed in some developmental milestones, they would see he was "normal." An early intervention agency provides a team of professionals who consist of a clinician, occupational therapist, physical therapist and/or speech pathologist. Sometimes a psychologist may also examine the child. The team members each evaluate the child and perform tests with the child to determine how delayed the child may or may not be. If a child is more than 6 months delayed, this is considered to be a problem and the professionals will then work with the child and his or her parents on ways to improve these areas. The team that came to my house found Brandon to have significant delays in all areas. The clinician that saw him most often said he was a "poster child for PDD/NOS." It would be another year before that suspicion would be confirmed with a diagnosis.

At Children's Hospital in Boston, MA, a developmental center routinely performs tests that are designed much like those that the early intervention team does individually. These tests are performed over the course of a few hours at the hospital. There was a long waiting list and I had been urged to call sooner rather than later to get onto that waiting list. Some parents wait over a year for the testing to be done. I had difficulty making that phone call.

To make that phone call would be to admit that there was a problem. I did not think there was a problem and I did not want there to be a problem. There was that part of me that was yelling inside that this had to be done. In order to help Brandon, if there was a problem, it's always best to face it head-on and deal with it as early as possible. Three months after internal debating, I made the phone call.

There was a particular event that made it easier for me to make the phone call. I had been sitting at the park watching Brandon play on the playground with other kids. He was almost four years old by this point. He was enrolled in the local preschool in a program for special needs children. I noticed that other kids were playing with each other. They were mostly playing side-by-side and occasionally engaging with each other. Brandon was off in the corner by himself making faces at the other kids when they'd come over to him. He was very determined to play alone. That incident bothered me as it showed the difference between Brandon and other kids his age. However, again, I just shook my head and said to myself "So, he's not a social butterfly, there's nothing wrong with that. I do not like to be around other people much either. He plays with his brother and that's good enough." But the image would not leave my mind.

Later that night, as I was laying down to sleep, I went over the past four years in my mind. I remembered how much Brandon never cried when he was hungry or needed a diaper change. I remembered how he never wanted out of his port-a-crib. I remembered how stiff he would get when I'd hold him and try to cuddle with him as an infant and toddler. I remembered his brother, daily, trying to get Brandon to play with him and how frustrated he would be when Brandon would refuse. I remembered when Brandon would become preoccupied with anything that would spin. I remembered how he would get close to the T.V., put his cheek against the screen, and watch the cars go around a race track. He would spend hours doing this if I let him. All this and more went through my mind and I could no longer deny that Brandon had some issues. I made the phone call the next day.

Brandon is now 7 years old and is in the first grade. He can read and comprehend several grades ahead. He's showing gifts in other academic areas that is language based, such as math word problems. He has a wonderful sense of humor and comedic timing that is out of this world. (When I borrowed money from his piggy bank this week, he said I could pay him back with three monster trucks instead of two. I said "What is this? Interest?" and he said "Yes. Compounded daily") . He does make eye contact for about five seconds at a time (or longer when prompted) and he has been socializing with his peers in more age-appropriate ways. There are still issues as Brandon doesn't seem to realize that other people have thoughts of their own and he will dominate a conversation with his newest obsession, Godzilla, but he has made friends. He will give hugs and kisses to me and his step-father before bed without flinching. Because of the early intervention Brandon did receive, he is expected to achieve a level of "normalcy" that will allow him to live on his own when he is grown up. That is music to my heart. 

When speaking to others about my children or when speaking to my children, I do not cut the boys any slack. Though there are things more difficult for them to do than for others does not mean they do not have to do them. It just means that they have to find a different way of getting them done. Being different is nothing to be ashamed of but rather should be celebrated. How boring would this world be if we were not all individuals and different?

My mother and father brought us children up to face challenges head-on. I can remember the cliches that mom and dad always said "When life gives you lemons, make lemonade," and "Life is a bowl full of cherries and sometimes all you see is the pits." Or in the words of rock musician Brett Michaels, "Every rose has a thorn." Or from the 80s sitcom, "You take the good, you take the bad and there you, the facts of life." It all comes down to this: In order to appreciate the good times, you have to go through the bad times. 

I feel bad now about the denial I went through. While I did not exactly deny Brandon any opportunity for help, I feel as though I was a bad mom during that time. Often times, when I refer to my boys, I do not say that I have two special needs children. I say that I have two special children. After all, don't all children have needs? Who's to say which needs are more special than others? Further, all children... whether "normal" and "healthy" or not... are special. And as any mom would, I think I have the most special children in the world. 

(1) Source of quote: Coon, D (2003). Essentials of Psychology. 9th ed. Thomson-Wadsworth: United States.