Our Journey Raising Two Children with Special Needs
This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.
Tuesday, October 18, 2011
He lacks social skills and does not understand the boundaries of his body and often invades the personal space of childhood friends and play dates. Other children are turned off by his bouncy energy, constant interruptions and noticeable immaturity. He is shunned by his peers. They do not want to play with this rambunctious hellion.
I watched my son's happy, contagious and exuberant personality start to wither. His inner confidence disappeared as he began to believe his own worthlessness since he could not control his actions, moods or thoughts.
As his mother, I searched desperately for help. I tried every hyperactivity control scheme ever invented. I removed sugars and dyes from his diet. I gave him fish oil and vitamin/mineral supplements. I read books, and articles, purchased meditation tapes and cd's on how to control your hyperactive child....nothing worked. I began to question myself. Was it my parenting style, was I too permissive, too strict, not consistent? I began to feel like I had failed my son.
It was then that I spoke with Weston's pediatrician, who suggested we try medication. Ritalin was our first trial medication. We titrated the dose up and up until finally we had success. Weston was happy and calm, his restless engine now idled in low. He became successful in school. His grades improved. His once familiar happy spirit had returned. He finally felt good about himself.
But Weston's body is like a freight train, his belly full of a raging fire that burns quickly through food and medicines. The success we had with medications lasted only a few hours. It wasn't long before Weston's impulsivity reared its ugly head again. We tried long-acting ADHD medications. Medicines guaranteed to last 12 hours. But for Weston, they were only effective for about four. We could not find a medication that would get him through the 6 hour day of school.
Finally, our only option was to give him two doses of meds during the day. This did not please Weston since now he had to go to the nurses office every day. Once again he felt like an outcast. Other kids teased him about his daily visits to the nurse.
It was also difficult to get an even dosing of appropriate medication into Weston's body. Too often the morning med would burn off too quickly and Weston would experience a "coming down" of the medicine. Then once he received the second dose, he would experience "a going back up". We just couldn't find a consistent and effective dose for Weston. We did not want to increase his dose since he was already on such high levels of medication and he is still a young boy.
We started the patch last week and I am happy to report, so far so good. Typically however, with Weston it can take a few months before we know if it will work for the long term.
Things have been going better at school and his moods seem much more consistent. So far, he is covered the entire day. The only problem now is getting it on him in the morning. Often he wakes up grouchy and lacking patience. It takes time to place the patch effectively on his body and without medication this is not an easy task. Still, I am hopeful for Weston.