In the Beginning
On January 30, 2007 we were blessed with a beautiful baby boy. Noah was born from a pregnancy fraught with nervousness on my part, albeit uneventful. I’m diabetic and Noah was 11 lbs., 2 oz. when he was born. The pediatrician that gave him his first exam told us that he was perfect. We certainly thought so and still do.
Being that I am an only child and Larry having been the youngest in his family, neither of us were particularly familiar with developmental milestones. Of course we had the obligatory copy of “What to Expect…” which I looked at each month. The first time that I thought Noah was different from the other babies was when he was a year old. I noticed that Noah didn’t seem to babble a lot. He didn’t call us Momma and Dada at 14 months. My concerns were temporarily left behind when Noah started babbling these two words, but returned within a couple of months.
At 13 months, I asked Noah’s doctor for a referral to a speech therapist, which she agreed was needed. I was terrified that there was something wrong and remember asking her if she thought that he would test normally. Her answer was no. So, we made the appointment and waited for three months.
Our first visit to the Oakwood Center for Exceptional Families was terrifying. There was a board on the wall that had siblings’ wishes for their disabled siblings. One of them said “I wish my brother didn’t have autism.” I was heart broken. I thought that we couldn’t belong here. We sat through the evaluation and got a report a week later that said that Noah was normal. You can’t imagine my relief. Or maybe you can.
For the next year, we were told that Noah was just a late bloomer. People told us that he would talk any day and that we would be looking back on these days wishing that he would be quiet. One friend remarked to me that Einstein had been a late talker. Even our new pediatrician was taking a “wait and see” approach. So we did “wait and see.” We put Noah in a day care for socialization, read to him incessantly, labeled everything we saw and worked with him with words until we were blue in the face. We got minimal results.
During this time we continued to worry. Noah wasn’t developing language at a normal rate and didn’t seem to be aware of his surroundings or of people other than us and my parents. There were other things that we noticed, too. Noah wasn’t coloring; he would just mouth the crayons. He didn’t play with the other kids at day care. He would not go to sleep until 11:00 p.m., sometimes later. He would shake his head in the fashion that you would if you were saying “no” repeatedly. There were probably ten signs that I could list off now, looking back. Even though I was concerned, I just couldn’t REALLY believe that there was something wrong with my perfect baby.
It wasn’t until Noah was about 28 months old that he was re-evaluated by the speech therapist. This time Noah scored in the first percentile in receptive and expressive language. The therapist was asking me questions that I knew were indicative of autism, but not coming out and saying the “A-word,” even when directly questioned. We started speech therapy the next week.
After a few weeks, the therapist recommended that we see the developmental pediatrician that worked in the clinic with her. We made an appointment, but were on a waiting list for over three months. During this time period, we contacted Early On and got an evaluation. Noah was delayed, but although my main concern was autism at this point, they didn’t recommend that we see a psychologist for further evaluation.
We were then referred to Teaching Our Tots Early (TOTE) for yet another evaluation. The results were the same: delayed, recommendations of continued speech therapy and socialization. Again I asked about autism, but was told that wasn’t a concern at this point. So we went along with the program: speech therapy twice a week and two sessions with the TOTE teacher per week. We were seeing progress, steady, but very slow.
When Noah turned three, we were given a choice between continuing with our current interventions or putting Noah in the local Early Childhood Developmental Delay (ECDD) classroom. The recommendation was the classroom setting. We had an Individual Education Plan (IEP) meeting and Noah started class the day after his third birthday. The teacher sent a notebook back and forth to communicate with us. When Noah started, she assured us that it often took new children time to adjust to the classroom. Within a few weeks, we got notes saying that Noah was spinning a lot in class and demonstrating “stimming” behaviors.
Also at this time, our pediatrician recommended that we have Noah seen by a developmental pediatrician. After some online research, we decided to go to the University of Michigan Hospital (U of M) and made an appointment. We had yet another three months wait ahead of us.
On March 17, 2010 we had our first parent/teacher conference. One of the first things the teacher said to us was “Has anyone talked to you about autism?” I gave her a quick synopsis of the past year. We talked a lot. I don’t remember about what. I was completely devastated. I very calmly sat through the meeting smiling and talking cordially, but I was devastated. I can’t express that clearly enough. Someone else had told me that there really was something wrong. There was no way around it. I cried all the way home. I could barely tell my parents about the meeting through my tears.
The next three weeks were awful. I knew what the specialist was going to say. I had no idea what to do. A couple of weeks before Noah was diagnosed, we went to an autism fundraiser that one of Noah’s classmates family was having. I was so nervous, but I new that we had to meet other parents who knew what we were going through. It was a lifesaver. We met two other sets of parents that understood that when we were talking about a sleepless night, we meant two hours of sleep, not that our son didn’t go to sleep until 10:00 p.m. One parent in particular provided us with tons of information, both about autism and some of the financial changes we were making. I guess I think of her as my “autism mentor.” Trust me, everybody needs one.
The process at U of M Hospital consisted of three appointments: intake, assessment and diagnosis/recommendations. At the first appointment, a medical student went over our questionnaire with us. The doctor came in to meet Noah and tried to engage him in play. No luck. She very pleasantly explained to us what our child wasn’t doing that a “typically developing child” would be doing: making eye contact and using the toys (a kitchen set) appropriately.
The second appointment was testing. Noah did many of the things that she asked of him, but after waiting in the lobby and then in an exam room for a combined hour, he had enough. He had a tantrum and wouldn’t fulfill any more of her requests. He did (for the first time), make a two word request: “need help.” It was at this appointment, not the third appointment as we had expected that the specialist made the diagnosis. Autism. I had very few questions. It was a confirmation of my worst fears, but somehow I felt more in control. As much as I had run from a label, now that I knew “its” name, I felt that I could finally DO SOMETHING ABOUT IT.
At the follow up appointment, we got a written diagnosis, some vague recommendations and a packet of local resources. We were referred for a hearing test, a sleep assessment (11 month wait) and genetics testing (six month wait), all within the University system. We were told to come back in a year for another assessment. That’s it.
I was incredibly frustrated. I couldn’t believe that my son, my precious, perfect little boy had been diagnosed with a life long, debilitating illness and they just sent us out the door with a wink and a smile. No “real” treatment options, just a mass of treatments to select from. No medicine, nothing. I wanted this to be fixed.
The great thing that the specialist did was give us information regarding the Beaumont Gift of Hope program. As luck would have it, they were having an “ABCs of ABA” seminar the next Saturday and Sunday. So we went. We found an answer. This was what to do. We met another couple who have an autistic daughter and the same passion that had to find our children treatment.
After scouring the internet, we found two other ABA programs, both of which we toured. Treatment is very, very expensive. One of the programs that we found offered a $2,800 per month for a 12 hour per week program and $5,000 per month for a full time program. Gift of Hope was $10,000 for 12 weeks. It was clear that we were going to have to make significant lifestyle changes and get help…FAST!
When we visited the Autism Center run by the Children’s Hospital of Michigan, I knew we were at home. It was so clear to me that this was the right program for Noah. Not only did they offer a full time program, they included typically developing children in the same numbers as the children that are on the spectrum. The program included a preschool program as well. It is our dream program.
We immediately began calling the insurance company and became encompassed with billing codes and diagnosis codes. Many hours of calls led to lots of different answers, all of them leading to a resounding no. I never expected to be in a situation where being gainfully employed and having insurance wouldn’t resolve things for you, and yet here we were.
Its only through the love and generosity of my parents that we are able to afford the program on an ongoing basis. We are still talking with the insurance companies, are planning fundraisers and are raising awareness and support for HB 4120, which will require insurance companies in Michigan to pay for autism treatment.
So that’s our story, so far. Although I realize that we will live with this our entire lives, I have hope.