When you have a child with developmental delays, you have the unique experience of raising that child with a series of strangers. From the moment your child is identified as different and in need of help, your life and your child's is no longer wholly your own. Strangers come into your home with advise and "homework". Doctors "monitor" and advise. It is an ongoing, seemingly endless process.
The process started with the doctors asking very personal questions about our child and our family. Did you smoke? Did you drink? Was he around lead paint? Does mental illness run in your family? (Not until we started this process!) Does mental retardation or learning problems run in your family? Did you do this? Did you do that? It was all a bit overwhelming and definitely intrusive. The doctors ordered tests and made referrals. We kind of stumbled along through the process because this was all so new and different from what we were used to.
After the questions and the testing, a "team" of professionals were assigned to our child along with a case manager to supervise the whole process. In my son's case, he had a primary doctor, a pulmonary doctor, a neuro-developmentalist, a physical therapist, an occupational therapist, and a speech language pathologist. When he was nine months old, the three therapists started coming to our house once a week for individual therapy sessions. Let the fun begin!
It is such an odd experience allowing total strangers into your home three times a week to work with YOUR child to tell you what to do with and for YOUR child. One of the therapists, bless his heart, didn't even have children of his own. Yet, he was offering me advise on how to parent my distractable, impulsive son. I learned to nod my head, store the little gems of advise somewhere in the back of my head, and then go forward with what we had learned through trial and error really worked.
One particularly frustrating example came about with our occupational therapist. An occupational therapist is supposed to work with a child's fine motor (hand) skills, preparing the child to write, button buttons, tie shoes, etc. Our occupational therapist spent a lot of time on "sensory stimulation" including having our son crawl through a tight, material tube, roll back and forth on nubby material, and use a jiggle ball or wand. "Research" told him that these things helped stimulate a child to improve his fine motor skills. I sat through these sessions thinking, "Work with his hands! Teach him to button his shirt! Help him learn to eat with utensils! I can 'stimulate' my child without your help but I can't seem to get him to do these other things." My husband always managed to find something else to do during these sessions which was for the best. He would have said out loud what I was thinking in my head.
When our son turned three, he had hit a short developmental burst just in time for him to transition from the early childhood program to the preschool program. These programs are run by two separate entities. To transition from one to the other, it required more testing, a case manager, paper work, etc. We debated if we even wanted to continue with this intrusion into our lives. We decided to see what came of the process.
After testing him, the preschool program decided that he no longer qualified for services. I questioned the issues he was still presenting and the concerns that his neurologist still had with his development. The case manager gave me an explanation about the difference between "medical qualifications" and "educational qualifications". I'll be honest. I'm a highly educated woman and it still makes no darn sense to me. If a child needs help, they need help. Period. End of story. She went on to explain that if she separated his expressive language from his receptive language, he may qualify for services but only for speech. Fine. Okay. Something is better than nothing. Then she explained that their hours of therapy services were only from 9am - 3pm. Gee. How convenient! My husband and I both worked first shift. How were we supposed to make that work? His neurologist wanted him in a preschool program to address the developmental concerns that she had identified but we couldn't afford to pay for private therapy out of pocket. No way. Not even an option. So we decided to give it a year and see what happened. Maybe he just needed time to grow and develop.
As I've written in the past, that year without therapy was a huge mistake. It was denial on our part of the severity and reality of what we were dealing with. We just wanted him to be okay, to be "normal". When it became evident that the "time off" had been a mistake, we recontacted the preschool entity and asked them to re-evaluate him. Same results. Same explanation. What were we going to do? Someone recommended taking him to Geisinger to the children's hospital out-patient therapy center. So we called and had him evaluated. Difference between "medical qualifications" and "educational qualifications"? At Geisinger, he qualified for all three services again (OT, PT, and speech). Yeah! Now we could get him what he needed to get him ready for school.
A new problem presented itself. Our insurance only covered 45 therapy sessions a year. That would be about 15 weeks of therapy. Now what were we going to do? The people at Geisinger said we needed to get him medical assistance through the medical loop hole. Needless to say, this experience definitely took me outside my comfort zone. It was embarrassing to have to apply for medical assistance and ask for help in this way. THAT process was a real eye opener but it was our only option. It was also the best decision we made through this whole five year long circus. The people at Geisinger are true professionals. The progress that he has made over the last year and a half with them is phenomenal.
When it came time to start school, we decided to wait and see how things developed. The day after kindergarten testing, the principal called identifying that the testing team had some concerns regarding our son's test results. (Yeah. I was expecting that.) At that point, I filled him in on the situation. He assured me that they would have to do further testing and get something in place to ensure that he was successful in school. True to form, this process has been anything but simple. It is the end of November and we are just now getting an IEP in place. Ironically, in the meeting last week, I got the same explanation about "educational qualifications" versus "medical qualifications". Still doesn't make any sense to me.
What I do know is that I will continue to fight for my child. He will not fall through the cracks. He will be successful. I'll see to it. There is nothing more important.
*** (My disclaimer) *** The therapists, doctors, and educators who have worked with my son through the years have done so with dedication and genuine affection for my child. It is the system that frustrates me, not the individuals working within the system. For them, I have nothing but love and respect. I am grateful for the time, energy, and efforts that they have put forth on behalf of my child.
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