I have been blessed with 3 of the most amazing little boys. All so unique in their own way, each one so special and needing attention in different ways.
My oldest, Nicholas, who is 11, has faced challenges since he was a month old. At about 4 weeks old he started vomiting. He spit up like infant but it soon turned into something worse. Before we knew it he began projectile vomiting and dropped below his birth weight.
The night before a regular checkup with his pediatrician he was up all night. He was so hungry but could not keep anything down. My poor baby was literally starving. When the doctor examined him she could see that he was dehydrated. She suspected it was Pyloric Stenosis and directed us to MUSC Children’s hospital. By the time we got there Nick was lethargic. We immediately met with a surgeon who examined Nick. The surgeon pressed so hard on his tummy practically touching his spine and Nick didn’t budge. The surgeon confirmed the pediatrician’s diagnosis and admitted him.
Pyloric Stenosis is a narrowing of the lower part of the stomach through which food and other stomach contents pass to enter the small intestine. When it becomes enlarged food is prevented from emptying out of the stomach. Surgery is required.
He did great with the surgery; it was quick and painless for Nick. Before we knew it he gained all of his weight back and then some. For me, it wasn't so painless. As usual I tortured myself. I couldn't bear to see him cry, I couldn't watch them put an IV in his arm. It was heartbreaking. But he healed and things were great for a few years.
Nick struggled bit in preschool. When it was time for kindergarten many weaknesses became visible. He would parallel play, he wouldn't interact with kids but would run with them and play next to them.
He had trouble grouping objects, organizing, following simples instructions, and focusing. He wasn't able to maintain eye contact, he was annoyed by certain textures, smells, and sounds, he experienced speech issues and took everything literally-the world was black or white to him...there was no grey what so ever.
When Nick started 1st grade, he seemed to be day dreaming...just sort of drifting away and getting lost in his thoughts. We were referred to a neurologist who diagnosed him with Absence Seizure.
He was prescribed medication. The idea of putting a 6 year old on medication that affects his brain was so scary to me. The medicine he was given, like most medications for seizure disorders, are also used to treat depression. Within a couple of week of taking his medication my poor Nicholas fell into a depression. He was talking about dying, blood, crazy stuff that I didn't even think he was aware of. I called the doctor and he was immediately taken off the medication. We tried another that wasn't right for him. The side effects weren't as severe as the previous one but it still altered his personality. Third times a charm...we changed his meds once again and this time, got it right and he was on track.
The meds didn't resolve any other issues he had. We didn't expect it to. His neurologist suggested we have him tested for ADHD. He referred us to Developmental Peds at MUSC where we had him evaluated and diagnosed with ADHD. The psychologist strongly recommended medication. The idea of putting him on more meds made me cringe. We tried what the doctor recommended and it worked well.
I was relieved that he was able to benefit from the meds without suffering any side effects. We were even more excited when we took him for a followup test for his epilepsy and he grew out of it! He was able to come off the medication he was taking for that. We were so excited about this!
Nick was still struggling with many other things. He began to experience anxiety, he was obsessing over things. All of his focus would go towards one thing for a few months then he would refocus on something else and obsess over that for a while. This became a constant cycle.
When Nick entered 3rd grade his symptoms became more apparent. My friend Laura spent much time in Nick's classroom volunteering. Her daughter Madyson was in Nick's class at the time. She called me one evening, her voice almost quivering. She sincerely expressed concerns she had about Nick from what she observed in class. She told me she knew of someone whose child has Asperger's Syndrome. Nick's symptoms sounded almost identical to this other child's. Although this was tough to hear there was a sense of relief that we might be able to put a name to whatever it was that he had and we would be able to figure out how to help him.
I called MUSC to schedule and appointment so we could express our concerns. The doctor agreed to test him. Well, what do you know...Asperger's it is! Nick was diagnosed the summer before he entered 4th grade. It was devastating, at first, to hear this news. I knew nothing about this condition and when I was told it is in the Autism Spectrum I fell apart.
Nick was failing tests in 3rd grade, he was anxious, he didn't want to go to school. In the beginning of 4th grade we had a plan! A great plan...he worked with a resource teacher, his confidence flourished, he was passing tests, and he made the honor roll 2 of the 4 quarters that year. Watching him walk up to the stage to receive his first Honor Roll certificate was an extremely emotional moment for TJ, Laura, and I as well as many others. I could never thank Laura enough for bringing this to my attention. It takes a lot of courage for anyone to bring something like this to ones attention. Because of her courage my son was able to get diagnosed and receive the resources he needs to succeed in school and life.
To this day Nick has his quirks, he always will. Those quirks change, new ones pop up, but once we get a hold on them and learn how to deal with them things are wonderful. Some his quirks define him, they are so endearing.
I often think back to the days when he was diagnosed with Pyloric Stenosis, Epilepsy, ADHD and finally Asperger's. I vividly remember how I felt...sad, guilty, angry and frustrated. I felt sorry for Nick, myself, and our family.
I still feel guilty to this day about Nick's struggles and challenges. I truly believe that we are being challenged now for challenges I denied years ago at Nick's expense.
I even though I was being punished. But How could this amazingly sweet and caring child be a punishment? He is a blessing, not a punishment. He is a true joy.
I couldn't imagine what life would be like if her were different. I hate that he has anxiety, but we will face it with him and get him whatever resources he needs to work through it. I hate that he is socially awkward but we will encourage him and reassure him and support his friendships and desires to try different things with different people. Will will not feel sorry for him, we will not feel sorry for ourselves, we won't get angry at anyone who notices his difference; we will simply explain his condition.
I've cried many nights for Nick since his very first surgery until we started to understand his condition and quirks. There is nothing wrong with my son; he is perfect in his own most unique, special ways.
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