By J.A.
When my mom happened to accompany my husband and Nick to the ped’s office for the 2 year old check up, she told him that she felt that Nick’s eye contact was not there. She said that he was not responding when we called his name. After much discussion, the pediatrician finally said that Nick might have PDD and that we should call Early Intervention for further evaluation. When my mom told me this later, I was so upset because, I had mentioned this 6 months earlier and he attributed it to developmental delay not PDD, a form of autism.
From that day forward, our challenges really began. I immediately called Early Intervention, set up an appointment and arranged for the intake and initial comprehensive evaluation which included psychological, speech, occupational therapy assessments.
During this time, I was so upset and so angry both at the pediatrician and myself. I was upset at the pediatrician because we had let 6 months pass without any intervention. It was precious time lost that we could have used. Additionally, EIS had a wait list for speech therapists and occupational therapists especially during the summer and that also compounded my anger and frustration. Things just weren’t moving fast enough for me since I had read that the window of opportunity for recovering our children closes around 6-7 years old. Since I had read all about autism during my pregnancy, I wanted everything to move faster than molasses. However, it seems that other people don’t care when your window of opportunity closes. Another case means job security.
I was also angry at myself because, I didn’t pursue it more with the pediatrician sooner. After all, I read all of those books and I knew the value of time. I kept thinking “I should have done this, I should have done that” At this point, it didn’t matter any more, the time was lost and we had no choice but race to the finish line as best we could.
In July 2002, we sent Nick, 2 years old, to a preschool. It was challenging for him because he had a difficult time adjusting. Thankfully, there was an older man named Mr. Jim. He took Nick under his care and watched him as closely as he could, since there were 6-7 other kids in the class to watch as well.
At this point, we went into EIS (Early Intervention Services) and began the long process of acquiring services. I was still in denial. Half of the time, I didn’t believe anything was true and I tried to ignore it by saying that “there’s nothing wrong” on the other hand, I kept thinking that “what if there was something wrong and I didn’t do anything about it? “ that would be worse. Therefore, I forced myself to go to the long and arduous process of getting Nick services. We first had to get a care coordinator, have him completely assessed by speech, occupational therapy and then an individualized family service plan or ifsp was written. Once this was organized, the providers started to come to my home. It was like a revolving door. Every afternoon, after school, my child would have to sit with the speech therapist, occupational therapist, or skills trainer. It was kind of depressing since I didn’t see much progress. In the mean time, I fed Nick organic food, no antibiotics, and no meds if at all possible. My husband, always went along with what I did, never questioning anything. I suppose that was good but then that was bad because I wasn’t sure if I was doing the right thing in the first place, I constantly worried about everything from the biomedical treatments, to services, to finances, to the future. As a result, I lost a lot of weight and I was only consumed by my son’s needs. I always felt so alone and helpless, wishing that I could look into the future and assure my little son that everything would be alright. Even though I told myself that, I didn’t believe it because it was such an uphill battle.
In the interim, when EIS decided that my child needed a skills trainer, we tried to review each applicant’s resume and interviewed them as well. I believe my husband and I talked to about 5-6 skills trainers out there, many of whom were very inexperienced, just out of high school or college students. That was all they could offer. We tried one or two but they didn’t work out because, it turned out that they did not know enough to address my child’s behaviors. After all, autism is half behaviors and half physiological. When we were about ready to give up, one skills trainer came in to my apartment for an interview in March 2003. Her name was Jennifer Dustow. She was dressed in a neon colored tennis outfit and a brightly colored orange jacket. She was about my age with bright blonde hair and had on enough perfume to know she was coming from down the hall way. When I opened the door, I was shocked because she was nothing like the other skills trainers that I had met before. My husband, Robert and I just sat there asking her questions as my son Nick started digging through her purse. After the interview, I was still not quite sure about her but my husband said that since she was doctoral student in the field of education, she should know what she was doing. Ms. Dustow was so confident that we would accept her that she pulled out all of her agency’s consent forms, all wrinkled from her purse and we signed them right away. I guess that is all history now.
She made tremendous progress with Nick and she provided valuable insights towards dealing with his behaviors. Most of his behaviors pretty much disappeared. He still had difficulty with transitions and being overwhelmed but I think that is something that he doesn’t have any control over until he gets older. I believe some of his behavior is due to medical conditions that exist and I am helping him deal with those slowly.
After about 1 year of EIS, I had to prepare for Nick’s transition to the DOE (Department of Evil). I went to the elementary school with my care coordinator and we had an initial meeting. I didn’t get a warm and fuzzy feeling from it. Many people have had negative experiences with the Department of Education (DOE). I was overwhelmed by it all especially since I was receiving advice from everybody on the IFSP team, the advocate, other parents, etc. I had to agree to allow the DOE to do all of their own assessments such as their psychological assessments, social worker, Intelligence testing, speech assessment and OT assessment.
Nevertheless, I was advised to prepare myself for the Eligibility meeting on February 2004. I had my son assessed by an independent speech pathologist, occupational therapist, psychologist and psychiatrist. When I went to the meeting, I thought I was well armed with information that would make the decision to consider Nick’s eligibility a very easy one. That turned out to be such a terrible assumption.
TAPOSITIVELY 