Are You Aware? How to Be an Advocate

autism - Mormon Women for Ethical Government

This is part IV in our Awareness Wednesday series on disability. Read the other posts in the series here.

My third child, a daughter named Marisa, was born in 1991. The pregnancy and delivery went well, but after she was born, we began to see behavior that was much different than our first two children. She would tantrum (screaming at the top of her lungs) frequently as a baby, and a toddler. Because of the intensity of her crying, I kept thinking she must be ill. So she was taken to many doctors and was poked and prodded, so very many times. All her medical tests came back normal. But she had no fear of losing sight of her parents, or any understanding of danger, so she would get out of the house and never look back. It was a terrifying time for us as a family.

Her pediatrician and I were friends, but he couldn’t understand my concerns about any type of developmental delays. Because of the fact that she could echo words, songs, etc. (called echolalia), she could appear completely normal. Finally, an occupational therapist suggested I take her to an early intervention (EI) program for an evaluation. After viewing a video I had taken, showing her tantruming, pulling her hair out, and tipping over kitchen furniture, they agreed that she had enough issues to admit her to their program. Diagnosing her with ASD — autism spectrum disorder — in the early 90s was more difficult than it is now, especially in a young child who had echolalia, so they admitted her with sensory integration issues.

She could read before kindergarten, she could sing every Disney song from every movie. She could repeat things that were said (echolalia), but she only had a few words that she actually understood the meaning of. Her toy play consisted of wrapping dental floss around little toys from Disney movies and swinging them in her peripheral vision. She also loved to turn light switches on and off rapidly, as well as clap very quickly in her peripheral vision.

While receiving services at this EI program, I began to study and research autism. My fourth child was born during this time, so my life was crazy. Marisa had no fear and would get out of the house, walk into other homes, and remove her clothes. This behavior required us to put special locks on all of our doors to allow me to shower without her escaping. Her strange play, we learned, was called stimming.

After some personal research, I heard about a program in SLC for preschool children with autism. They only had room for 24 children for the entire state of Utah, and they were an hour away. I learned about this program called the Children’s Behavioral Therapy Unit (CBTU). I heard good and bad things about the type of therapy they provided. Behavioral therapy was controversial for preschoolers, but I placed her name on the waiting list and decided I would make a decision once she was accepted.

One of the most important things I have learned over the years is that I know my child better than anyone else and am best suited to make decisions for her benefit. No one else is going to step up and fight for what my child needs. That is my job, whether I feel capable or not.

After a short time in the preschool program in our local school district, a space opened in the CBTU in the middle of the school year. We had taken her to a child psychiatrist who told me Marisa didn’t have autism. But after a call to CBTU (telling them she didn’t have autism) they recommended we keep her on the waiting list anyway. They assured me that a child psychiatrist with extensive experience would evaluate Marisa before she could be accepted.

We drove her to SLC on a cold November day, and the child psychiatrist was able to cut through Marisa’s ability to compensate while testing — and diagnosed her with ASD within 15 minutes. We didn’t talk much on the drive home that afternoon, for a couple of reasons: One, we now had a definitive diagnosis of autism, and two, because of the long waiting list, we had two days to make the decision to take my mostly nonverbal 3-year-old to an all-day program in SLC. We were devastated, even though we had been pretty sure she had autism and would need this intervention by age 5 to help her gain meaningful speech.

Once she started this program, we began to see some amazing progress in her ability to speak and understand speech. These skills helped to decrease her tantruming. Knowing she had one and a half years to attend CBTU in SLC, I started evaluating kindergarten options in our local school district. I had no idea if she would be mainstreamed or would continue to need a more intensive program in kindergarten. I realized we needed to tell our story to the Alpine School District to help them understand why most autistic children do not learn well in a normal special education classroom.

A friend named Teri, who I met in the EI program, also wanted to talk to people in the special education department of the Alpine School District. We wanted to have a kindergarten class available to continue on with the behavior modification techniques that were so successful in helping our children progress. We met with the Alpine School District person over preschool programs and took him to observe our children in the program in SLC. We educated him on the need to develop meaningful speech through early intervention, and why the regular preschool programs, or classrooms for the severely disabled, wouldn’t work as well for kids with ASD. We decided to approach the situation with the assumption that everyone at the district level would work as our advocates. Surely the majority of people who go into special education as a career do it because they want to help children — it’s definitely not for the money.

Because of the great relationship we had with this person at the district level, he helped organize a meeting with the superintendent of the school district. My husband and I, and my friend and her spouse, met with the superintendent and taught him about autism and how important it is to have intensive early intervention for our children. We wanted a kindergarten class that was a full-day program and would continue with the same treatment our children were currently receiving. As we left his office, he made the comment in front of the important people in the special ed department, that he “Didn’t want to hear why it couldn’t be done, but how it COULD be done.”

We weren’t the most popular with the person who held the purse strings for the special education department of the school district. But, she had been given her assignment, which was to help us. It was amazing that they were able to open a kindergarten classroom in our district specifically for kids with autism, and they hired a teacher from SLC who had been working at CBTU. We were so excited.

During Marisa’s second year at CBTU, there was an emergency parent meeting in SLC where we were told that the waiting list was so long, there were children who would never be able to access this critical intervention. My child was guaranteed her placement, but I saw the desperation in the faces of many of the parents whose children would turn 5 without having the same opportunity as my child. During this meeting, the parents divided into two groups: one group would seek funding for the following year (to add one extra classroom, which would allow 32 children to be served); the second group, which included my friend Teri and I, along with Carmen Pingree, would lobby the legislature to increase the funding for the CBTU program and hopefully raise enough money to add a small classroom of eight preschool children in Utah County. Carmen had lobbied the state legislature and was able to start the CBTU program in SLC. She was going to teach Teri and I “Legislative Lobbying 101.”

Utah County, at the time, had some powerful legislators who were on some key legislative committees. Carmen taught us that true lobbying starts way before the legislative session begins, because once the session starts, they are too busy to meet with anyone or take time to understand or fight for additional funding.

At this point, Alpine School District had started their one kindergarten classroom for children with autism. The classroom was going very well, so it was decided that we would hold a luncheon for legislators at the school. We would promise them a one-hour meeting during their lunch hour, talk to them for 45 minutes while they were eating, and then finish up with a tour of the darling kiddos in this kindergarten program. It was a great plan — until I started making calls to the legislators with a few dates. None of them could make any of the dates.

My new plan consisted of calling each legislator and asking them what date would work for them. They didn’t have the ability to say no to every date in the four-month period prior to the legislative session, so each legislator got their own personal luncheon. We organized mothers of some of the children and asked them to help make food. We had no money, we had no experience, but we had mothers who were willing to do what it took, even if it was out of our comfort zone.

Carmen came to our first luncheon with a particularly prickly legislator who had many reasons why they couldn’t add any money to provide more services for our kids. Teri and I watched as Carmen asked him if we should “Just line up all of the kids with autism and shoot them.” We couldn’t believe she would say something like that, and we really felt out of our league. Thankfully, the rest of the luncheons went much more smoothly. The fact that we weren’t experienced lobbyists, just some passionate mothers, was our key to success. Whenever we were unsure of the next step, some of our new legislative friends mentored us and helped in any way that they could.

On the last day of the session, when the Executive Appropriations Committee was deciding to approve or cut funding, a legislator from Davis County stood up and wanted to take half the money earmarked for the SLC expansion and our eight-child classroom in Utah County. During a committee meeting, the only people who can speak are the legislators on that committee. We were completely surprised when the “prickly” legislator stood up and defended us. We had won him over after all.

We were so happy with our success that we lobbied the next year for an expanded program in Utah County and a small program in Davis County, and the year after that we lobbied for the Nebo School District.

Today, Marisa is 29 years old and just had her sixth wedding anniversary. She has a bachelor’s degree in cello performance and music business from Snow College and has performed at the Hale Center Theater in Orem, at weddings and other functions with a professional quartet, and is part of the Timpanogos Symphony Orchestra. AND she still is on the autism spectrum.

I have continued my advocacy on behalf of others and now, myself. I was on the board of Kids on the Move (the EI program in Utah County), I’ve attended IEP (individualized educational plan) meetings with other parents to help their children get the appropriate specialized intervention in school, and I’ve volunteered/helped at fundraising events for autism programs throughout the state of Utah.

Over the last four years, I’ve had health issues and was given a diagnosis that didn’t feel correct. After years of reading NIH articles and other well put together medical studies, I was able to figure out that I have an autoimmune disease called psoriatic arthritis. I have now started on a treatment that is finally helping me. After reaching out to someone nationally with the same diagnosis, I have been asked to help lobby state and federal legislators on behalf of people with psoriatic arthritis and other diseases where a medical insurance company can require someone to try the cheapest medication available prior to starting on a medication that is more targeted to their particular needs. The fight goes on.

You don’t need to be a professional to make a difference. You just need to have the determination to keep going, overcoming any obstacles that may be placed in your way.