Coping with a Challenged Child
by Marla Ledezma
Children’s Outreach Project Employee
My son Jared is the most loving child you will ever encounter. He has genuine concern for all people and although he may not always act appropriately, he has good intentions. He lives life with the sole purpose of enjoying himself. He does not have one ounce of malice in his body and only cries when his feelings have been hurt or when he suffers a serious scrape or cut. He is always concerned with the other members of our immediate family and their well being. My pregnancy with Jared was very normal. He was our third of four, so I have something to compare it to. I took no prescription or over the counter medications while pregnant. He was born on his due date (all three of my girls were late…and still are on a regular basis).
Jared developed a little more slowly than our other children, but we weren’t concerned because children develop at different rates. Jared was a great baby and hardly ever cried. He never babbled and didn’t roll over until he was six months old. Children will typically roll over between three and four months of age. Our families teased me about spoiling Jared and holding him too much. They told me if I’d put him down, he’d move around. He finally sat up at about eight months and crawled at one year. In a typically developing child, these milestones occur between five and fourteen months of age.
When my son was 13 months old, our fourth child, Marisa, was born. Jared was still not walking, and in the next few months, we became greatly concerned with our son’s delayed development. When Jared was nearly two years old, we took him to Children’s Hospital for diagnosis. We were told upon evaluation by a speech and occupational therapist that Jared exhibited signs of Sensory Integration Dysfunction (SID) and Oral Dyspraxia. This was not a firm diagnosis, but rather a suggestion of traits he was portraying.
Sensory integration, or SI, is the normal neurological process of organizing sensations for our use in everyday life. We use sensations to survive, to learn, and to function smoothly. One example is that of climbing stairs. People with normally functioning SI systems do not realize their body is making constant adjustments to maneuver a set of stairs. Children with SID don’t have the built-in capability to complete common tasks like these. Therefore, their brains must be "trained" through occupational and cognitive therapy to appropriately respond to everything. Children will benefit the most from these therapies between the ages of two and six. After the age of six, the brain becomes "hard-wired" and learning is more difficult.
During this visit, we were told that my son would "never be normal," and that he "would never function normally." You don’t know how devastating those words are until you’ve heard them applied to someone you love. Although we did not agree with these statements, we now knew how difficult things were really going to be for Jared.
We left the hospital with very little information. We had a technical term for what may be wrong with him, but had no direction on how to help him except the promise that Jared had been placed on the appropriate therapy waiting lists. We managed to find private speech and occupational therapists well before receiving a phone call from the therapy offices at Children’s. Jared has been receiving these services since June of 2002.
Monitoring Jared was a full time job. He is a "sensor seeker." He craves tactile input from all types of stimuli. He touches everything. He does not understand the dangers of traffic, strangers, sharp objects, heights, chemicals, medications, strange animals, hot surfaces, and many other dangers that children normally only need a warning or two to avoid. How do you monitor a child who has his disorder and not make mistakes? If you allow yourself to focus on anything but your special child for any period of time it can be disastrous.
Shortly after moving into our new home, I came downstairs to find Jared sitting on our kitchen counter near our new knife block. He had a knife in each hand and the other 12 were spread around him on the countertop. He was not injured, but the knives currently reside in the top of the pantry.
Jared has chewed a night light bulb; flushed objects down the toilet numerous times backing up the plumbing; colored on every conceivable surface in our home; painted with fingernail polish, lotion, liquid detergent, shaving cream, and some other substances we won’t discuss. My son gives himself "swirlies" in the toilet and I’m certain he does it with his eyes open to watch the water go down. He will get into a shower fully clothed and turn the water on. He seeks out water in dog dishes, strangers’ cups at fast food restaurants or back yard barbeques, lakes, rivers, pools, etc.
Jared required so much extra care from the age of one to four that I had a difficult time bonding with my youngest daughter, Marisa. I nursed her as I did all my children, but didn’t get the chance to spend much time with her outside of feeding her. I did not feel close to my daughter for the first three years of her life. I didn’t feel the same connection I had with my other children. My guilt was overwhelming. I am fortunate enough to be married to Antonio, a wonderful husband and father. Marisa grew very close to her dad and remains very close to him now.
We made the decision to keep Jared in private therapy and look for a program where he could continue to work on his skills. We were very excited when we toured C.O.P. I was at the end of my emotional rope and needed some help. We knew Jared needed the consistency the program at C.O.P. was offering as well as the additional therapy he would receive at no additional cost to us.
Jared’s therapies cost nearly $500 each month. Until the age of five, our insurance company was paying a percentage of 20 visits per year for each therapy. Jared has 50 visits per year for each therapy. After turning five, just over one year ago, our out of pocket expense has jumped to nearly $6,000 per year.
We began bringing our son and youngest daughter to C.O.P. in September of 2003. The beauty of the program at C.O.P. is that it is fully integrated. Marisa, whose sensory integration system may rival that of a young rocket scientist, has her needs met just as Jared does. They are both challenged in the areas they need to be and each are happy in their environment.
Our son the consistency he needs and is thriving. The therapists and all of the staff members here are very compassionate and their concern for each student is inspiring. They truly understand what our program means to children and their families. They all become excited with each child’s progress. They share this joy with each other so teachers other than a child’s own knows of his or her accomplishments. Jared has just completed a lengthy evaluation by a development neuropsychologist and has finally got a definitive diagnosis! As we suspected for some time, Jared is Autistic. He is doing great! He follows directions now if you use simple language and limit commands to no more than a string of two at a time. He is totally potty trained (even through the night!) which we thought would never happen thanks to the diligence of his teachers. He focuses in class and at home more frequently and can sit for longer periods of time. He requires less supervision and we are finally enjoying family outings!
Marisa has gotten the opportunity to be her own person and not be overshadowed by her older brother. As my son gains independence, I grow closer to my youngest daughter. I feel very connected to her now for the first time in her young life. Shedding the guilt of neglecting her has been very liberating and her attention grabbing temper tantrums are now few and far between.
I must say that today, I can sum up my pleasure where my son is concerned in one phrase: When Jared acts appropriately it makes my heart soar. I am totally committed to C.O.P. now more than ever because as I went from parent, to volunteer, to employee, I was given the opportunity, as I am every day now, of watching the progress of so many other children here. It is very rewarding to watch children overcome their disabilities or challenges. I wouldn’t trade my job for anything.