Looking for Help
It had been over twelve months since Fred had mentioned the word “autism” in the doctor’s office. We had lost over a year! The guilt was horrible. We should have pushed more for an answer to our concerns. Focusing on the “should haves” or on the instinctual desire to “blame someone” or to get depressed as you blame yourself was not going to change matters. Now we knew and we had to focus all our energy on “saving Zachary”.
Dr. Johnson said that she would get a few telephone numbers to get us get started in finding people who could be of assistance. Zachary was now protected under the Americans with Disabilities Act and was entitled to participate in certain state-funded programs. She also gave me the name and phone numbers of two top behavioral psychology professionals in Chicagoland. I told her I had talked to my father who was a doctor about my suspicions regarding Zachary and that he suggested I also see a neurologist. My father was within a few months of retiring from emergency and, although he continued to practice in his clinic, he readily admitted that he had no idea how to even begin to treat my son for autism. It just was not something he was familiar with. Looking back, he was the only doctor I knew who ever admitted “not knowing something”.
I knew my father had spent several hours researching autism on the Internet when I informed him of Zachary’s condition. I heard the helplessness and sorrow in my father’s voice when he mentioned the fact that many of these children spend their entire lives in special homes, never once saying a word. Although perhaps to a lesser degree, I think he must have felt that feeling of inner death I had felt that first night. Dr. Johnson agreed to provide me with the name and number of a neurologist but she did not have it at the moment. She asked that I call her office the next day and stated she would leave the information with the nurses. As Fred and I left her office, he made a comment to me: “She won’t last here”. I asked him what he meant by that. “She’s too willing to help…to recommend tests and specialists”, he said. “She is still too new to the system”.
That afternoon, I went home and took out my little “keepsake book” in which I had written so many precious lines about my children as they were growing up. I looked at all the entries for Zachary. Dr. Johnson had stated that I should have as much information on Zachary’s development as possible when I spoke to the neurologist. Zachary’s Date of Birth, August 12, 1997. First time Zachary rolled over, February 13th, 1998. First word, “mama, mama, mama”, May 2nd, 1998. That was now almost two years ago. It was at that moment that I truly saw that Zachary had actually lost words he used to say and that now he only used about five or six words. Again, something so critical, I had brushed off to the fact that boys were “slower” and that he was just a quiet child. How could I have been so blind?
Zachary pulls himself up against furniture, July 31st, 1998. Zachary’s first step, September 13th, 1998 - I had waited a long time for that one. Zachary is running well, January 2nd, 1999. These were the basics I needed to be ready to speak with the neurologist.
The next morning I got up and called Dr. Johnson’s office as she had instructed me to do. The nurse who answered the phone stated my best route would probably be to go with the behavioral therapist Dr. Johnson had recommended. The nurse had yet to give me the name and telephone number for the neurologist. I felt an anger come over me. How dare this nurse question what I should or should not do for my son. I wanted to see a neurologist and I was going to see one. I knew that HMOs/PPOs limit the seeing of specialists but I was determined to see one and the nurse’s medical advice/opinions had not been asked for. She then made another comment to the effect that she thought I really should call the behavioral therapist. I was really getting angry and insisted she give me the name and number I had called for. She provided me with the information and I hung up. It would only be later that I would figure out what she was trying to tell me in her tone of voice, but could not say outright. At the time, I did not see she was actually trying to help me...but soon, I would!
I left a message on the voicemail at the neurologist’s office stating that I was interested in getting a preliminary evaluation of my son. The next day, I received a call on my voicemail at home from the neurologist’s nurse stating that this neurologist was very experienced with autistic children because he too had an autistic son and that “he could put Zachary on drugs” as necessary. I was appalled by this message. I had inquired only about a preliminary evaluation of my son and the first thing out of this office’s mouth was that they could provide me with “drugs” to control my son. If that was their first inclination without having even seen Zachary, I was not interested in their services and left them a message exactly to that effect. I now understood what Dr. Johnson’s nurse had been trying to tell me all along, what she perhaps knew but could not say outright. After that episode I had completely lost faith in the “medical” community. I would try another avenue.
I then called the office of both behavioral therapists Dr. Johnson had given me numbers for. Both were out of Chicago and Dr. Johnson had told me they were among the best in the nation for the treatment of autism. Fred and I were debt free and could come up with the funds to pay for a good program if we had to. Behavioral programs could cost anywhere from $35,000 to $50,000 a year. Both offices had waiting lists of close to a year or more. Zachary could not wait that long. I could not wait that long. We had already lost enough time! I tried something else.
I called the State of IL to see what was available for Zachary. According to Dr. Johnson, he was now protected under the Americans With Disabilities Act. Well, that sounded great. Surely, I could get him some help through the State. Unfortunately, for children like Zachary, under three years of age, this provided very little...only two hours of speech therapy per week. What was that? Basically nothing! Had he been over three years of age, he could have received up to five hours... maybe... if I fought for it. The assistance provided could vary from state to state…I just knew that for Zachary and for our family, the State was not the answer.
Ever since that night, when I first confirmed for myself what was wrong with my son, I had made it a point to get up very early and be there “in Zachary’s face” by the time he woke up. As soon as he awoke, I would try to engage his eyes to look at me. For the most part, he did not. But, still, before he got up, I would spend time “working with him” for anywhere from fifteen minutes to an hour or so. As I spoke with the State’s social worker, I kindly told her: “Thanks, but no thanks. I do more with Zachary before he gets out of bed in the morning than what the State was offering me for an entire week”.
Dr. Johnson had also given me the phone number for some type of “outreach” program that could help me with babysitting Zachary for an hour or two if I had to go do errands, etc. Again, for our family, it was not something we were interested in. Fred and I could take turns babysitting when errands had to be done…and anyway, we preferred to do all errands as a family.
So, the neurologist was out, the behavioral psychologists were out, the State was out and we had no family in the area...we were pretty well on our own! I came to that realization very quickly. Sure, I knew if I wanted to I could find another neurologist, perhaps students of behavioral therapy, etc., but, then again, no one knew my son better than I did, and no one would have the patience with him that I did. I did not want to be running from one “professional” to another, professionals who could give me no guarantees, and who quite honestly, had no more answers than I did.
To me, by definition, if the solution offered was just “masking” the problem either with drugs or with constant, drill-like repetitive routines; that was not truly getting at the underlying issue, was it? I went to bed that night, resolved that our family would “save Zachary”, no one else could or would do it for us. In my heart, I knew that I did not have to spend tens of thousands to do this. I did not agree with the whole reward-punishment system that was at the very heart of behavior modification techniques. That was fine if it worked for other parents, but it would not be the route we chose to pursue as a family. I, also, could never consent to just putting Zachary on drugs to once again “mask” the problem…forget that! And, anyway, deep down, what could a neurologist tell me anyway? So, he could confirm there was something wrong with the manner in which my son’s brain worked. I already knew that. I could not think of anything a neurologist could really do to help in terms of getting “rid” of Zachary’s autism. All he could really do, deep down, was offer me a prescription! I already knew that! Autism was still too big an unknown in too many disciplines. No one had any guarantees because no one really 100% knew what caused the problem in the first place.
Although we had consulted with a pediatrician about Zachary’s autism, and thereby confirmed our suspicions, we consulted no further with doctors, psychologists (behavioral or otherwise), or other healthcare professional in the treatment our son as their “answers” were too few or too ambiguous or their waiting lists too ridiculously long. We had made a few calls based on the information provided by our pediatrician, but nothing seemed to be a viable option for Zachary.
Like me, all those we had “reached out to” for help would simply be going by trial and error anyway. I was determined. As a family, we could do this…we had no other viable choice. We were on our own!