By Nicole GuBrath
When my son, Xander, was 15 months old, my husband and I noticed that he didn’t “have” words yet. On occasion he would stand isolated and say his ABCs and 123s, but never at our request. When we’d try to interact with him or encourage him, he would stop using his voice. As a baby, he didn’t babble or gesture by pointing or waving. We went to our pediatrician, who wanted to take a “wait and see” approach until his next appointment at 18 months. Unfortunately, our pediatrician was deceased before our next appointment.
After the unexpected death of our pediatrician, his practice was left in limbo. A substitute doctor was taking appointments, and we went in for our appointment as scheduled. We expressed our concerns about Xander’s lack of verbal ability. The doctor told us that he was concerned at what he had seen- we were the problem as parents as we “indulged” him too much. We left the appointment feeling horrible, but knowing deep down that we were not the problem.
It wasn’t just the doctors, everyone has an opinion. Relatives who we rarely saw gave us articles about how some parents don’t engage their child correctly, and how to do so, which was ridiculous. One relative even said that the reason our son didn’t talk was because my husband and I talk too much. It was a very lonely time for my husband and I. Was this our fault? I think it was easier for people to place blame than to accept that something could be wrong with him.
A friend of mine referred me to Child Find, which is part of the Individuals with Disabilities Education Act (IDEA) act that requires states to identify, locate, and evaluate all children with disabilities, ages birth to 21, who are in need of early intervention or special education services. A representative from Child Find came to our home and observed Xander. It was obvious that she was concerned although she stopped short of calling it autism. I knew that something was really wrong from her demeanor.
We avoided the idea that Xander could have autism. We did constant searches on the Internet to try to find out why our son was not talking. His ability to hear was questioned, but there were many indicators that Xander could hear. He disliked loud noises like the vacuum cleaner, but would never respond to his name.
We were referred to The Resource Exchange (TRE) in Colorado Springs for services. We were also told that Xander qualified to enter pre-school at 3-years-old. TRE provided speech therapy. When Xander turned 3, we cried when we put our son, with no self-help or language skills, on a school bus.
We had further complications. When Xander was 6-months-old we had the terrorist attacks of 9/11. The subsequent stock market crash had caused the business where my husband worked to close. We both got new jobs, I worked all day and my husband worked all night. We had no medical insurance and few providers would take cash payment, which we were happy to pay.
My husband and I were so distraught with worry about what was wrong with our son. We looked at apraxia of speech or dyspraxia, a neurological speech disorder in that affects the ability to sequence and say sounds, syllables, and words. We had his hearing tested several times. We were able to make payment arrangements with a neurologist who gave our son, Xander, an electroencephalogram (EEG), a test to detect problems in the electrical activity of the brain.
All tests were negative.
As much as we didn’t want to accept it, autism was the only disorder that seemed to fit Xander. It wasn’t that he just couldn’t talk, Xander was also lacking eye contact and expressions (he didn’t point at objects or wave.)
We were desperate. It really felt like torture for my husband and I, not knowing what was wrong. We were told we could get help through Medicaid and Social Security Disability Insurance if we could just get him a diagnosis. When Xander was three-and-a-half we were lucky to get a therapist who recommended a clinical psychologist that worked out a payment plan for his evaluation and diagnosis. Xander was diagnosed with autism.
After 2 years the diagnosis was a relief. We finally knew what was wrong so we could begin even more therapy. We started more therapy and dietary interventions such as the GFCF diet. Initially we went through a period of trying to “fix” him. There are so many stories implying that autism can be cured, if we just worked hard enough.
My husband went back to college, and we took out student loans to help supplement our income and pay for therapy.
The average lifetime cost of caring for an autistic person can be as high as $3.5 million, so we knew we needed to get into more financially secure fields of employment. My son was going to a child development center when not in school, but after a year they called us in and told us that they didn’t have the funding for him to come any longer. He needed one-on-one attention that they could not provide. Some of his symptoms include not being potty trained, poor eating habits, not being able to sit still for long periods of time, climbing and dare-devil tactics. He was also hard to contain in a classroom and would try to escape. Xander is very smart and could easily get around most typical child proofing. We understood, but now what would we do?
I had the incorrect impression that as part of paying taxes, we were helping people in situations like ours. When we applied for SSI and Medicaid we were shocked. This was in no way automatic; you had to have a very low income to qualify. If we did, we wouldn’t be able to afford our very reasonable mortgage. We couldn’t afford health insurance (at more than half of my income,) but made too much for these programs.
I worked all day and my husband worked all night, and went to school during the day. My husband was already only getting a few hours of sleep each day. I spoke to my employer and was very fortunate that they let me cut my hours. We would not need to pay for the development center and would qualify for a small amount of SSI and Medicaid. The Medicaid was more valuable than anything, because Xander would have free medical care.
There are problems with SSI and Medicaid. We can only have up to $3,000 in assets and our life insurance policies were scrutinized. We are discouraged from ever getting raise or saving money, or we’ll owe. We are better off living in poverty under this system, and the “reward” we will receive when we better ourselves by getting an education will be a complete loss of Xander’s Medicaid medical benefits, and then paying for insurance that likely won’t cover any of his therapy needs. Occasionally we receive letters saying we have been overpaid and owe money to SSI. The last statement was going back to a period 2 years ago. We send in records of income every month, and then we have to go through the trouble of sending everything in again. A majority of the time SSI is wrong, a few of the times they have even ended up paying us! Whenever this happens I live in fear for my son and for other people with disabilities that have to navigate the system on their own.
Xander just turned 6. He is adorable, sweet, very affectionate, and he is making progress. He loves bubbles, balloons, playing in boxes, dancing, swimming, and jumping on the trampoline. He has a full-time aide in kindergarten and loves school. He is still non-verbal, but recently got a Facilitated Communication Device, a computer with pictures and letters he can press to make words. He is not potty trained and still has poor eating habits but is showing progress in all areas. We celebrate every little victory, and we are fortunate in a way in that we only have one child so it’s been “normal” for us. Thank goodness they grow gradually (you aren’t handed a 6-year-old with autism.)
Xander is fairly flexible and has a great disposition, but very much has his times where even grocery shopping is impossible. Autistic children look very normal, so when he has a meltdown (explosive tantrum that can’t be consoled,) people look at it as bad parenting. This forces us to separate often with one of us staying home with him while the other does errands.
Autism is very difficult for families. Everyone has a different opinion, and some can’t see past the disability. Xander gets overwhelmed in loud family situations, and we often end up separating so one of us can get quality time with people while the other entertains Xander. The divorce rate for parents of autistic children is projected to be between 75 and 90 percent. Stress isn’t easy in any relationship, but we are fortunate that we are best friends, and this has only strengthened our relationship.
My husband is about to graduate from college, and I just returned. We both live in fear of anything happening to either of us. There is currently a crisis in supplemental services for families of those with disabilities. If the system doesn’t change, there is a possibility that we will be elderly caregivers, which is frightening. We hope things change, especially for our son. He deserves a chance.
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