I’ve been spending time reading the blog posts of my friend and colleague Dr. Wendy Sue Swanson, also known as Seattle Mama Doc. Wendy Sue is a formidable blogger. Frankly I’m jealous as I don’t know how she manages to write so much, so well and with such heart and humor. What I find so engaging about her posts is how personal and real they seem to me. She’s frequently describing situations in terms of her life as a pediatrician and a mother. The Autism Blog that we at the Seattle Children’s Autism Center have been producing is a group effort. Many of us have written blogs about issues we want to share with the general public, but sometimes our blog seems to lack the personal touch that we all feel as members of the Center. Thinking that, here is my contribution on a more personal note.
First a confession. I am not the parent of a child with an autism spectrum disorder (ASD). When I try to write about ASDs and families’ experiences dealing with this issue, I do my best to understand what they experience, but admittedly never really can know what their life is like. A question we pediatricians frequently get asked is, “If this were your child, what would you do?” Frankly, most of us throw our hands up in despair because though we do think about this question, we know in our hearts that we can never answer those questions. Having said all that, I do feel I have lived with autism almost every day of the last 10 years of my life. I think therefore I have some validity in talking about what it is like to live with ASDs.
Before I tell you about what I saw this last week, I have to say that all the “cases” I mention are not these children’s real names. Nevertheless some families where I’ve shared more specific details have given me permission to tell their stories. My day started with Mrs. X bringing both of her twin 12-year-old boys to see me. Jared and Landon (not their real names) are severely affected by autism. They are non-verbal, off in their own worlds, and have some pretty severe behavior problems. These can include screaming, hitting, biting, and pinching. Sometimes there are reasons one can figure out for these behaviors, but most often not. The twins have trouble being near each other. One is seemingly so frightened of the other, that when driving, one has to sit in the back seat and the other in the front seat. The sound of one boy screaming makes the other hide or attack. New situations can be huge stressors; even having a bowel movement can be a trigger for a meltdown. Both boys have benefitted from being on strong medications, which modify some of their extreme behaviors, but by no means eliminate them.
In addition to these two boys, the family has another set of typically developing twin boys aged 13 ½. Yikes, two sets of twin boys!! Jared and Landon’s older brothers are an enormous help to their younger sibs. For example, they are excited because this next year they will all be going to the same middle school and the older boys want to ride with their younger brothers on the “little special education” bus. They live some distance from Seattle, a ferry ride away.
If that is not enough challenges for any family, mom tells me she just graduated from a community college on the dean’s list having completed an AA degree as an honors student. She was offered a scholarship from Harvard University to finish her Bachelor’s degree, but had to turn that down and instead was accepted at the University of Washington. She hopes to go on to a Masters or even PhD in future years. Frankly, I wondered how she is going to go to the UW, be the mom of two sets of teenaged twin boys, two of whom have severe autism and travel from a far distance to Seattle to go to classes. Nevertheless, when I offered a possibility of having the boys see a behavioral psychologist at the Center, who would help set up an intensive home program with some funds through Division of Developmental Disabilities (DDD), she just added that to her list and said, “Let’s do it.” She has a wonderfully supportive husband and generous other children to help but even still I cannot imagine having that amount of strength. WOW!!
Not all stories are so positive. Eduardo (again not his name) is 6. He too is severely affected by autism, non-verbal with very problematic behavior. My interview with his mom was supported by a Spanish interpreter. His problem behaviors include taking his clothes off in public, peeing and pooping in public, irritable and aggressive behavior, hyperactivity, not sleeping, coming into his parents’ bed and awakening them by head butting, and taking off his seat belt when riding in the car!!
I’ve been trying a number of medications and medication combinations to help with his more problematic behavior, so far with little success. I advocated he receive extended school year services (summer school), but his school district did not have the funds to provide that. We’ve been waiting over 6 months for approval of a vest device that would attach to car restraints to keep him safely in the back seat while traveling. Funding for an enclosed bed, which would be a safer environment for him to sleep, was declined by his insurance provider as well. He has gotten out of bed and pulled a dresser over on himself in the past. The only safe environment for him now is to sleep in his parents’ bed where he thrashes and head butts much of the night. No one gets much sleep in that house.
And then there were the many small triumphs. Sarah is now toilet trained completely at age 9. Alex (8) used to pick his skin raw, so much that his scars made someone think that he was being abused. His mother had to even put up with a Children’s Protective Services (CPS) investigation. Fortunately medication has stopped his skin scratching and his mom has a new and better relationship with his school nurse. Cody is much less anxious since we stopped some of his medications. Julie (12) has her own locker in middle school with a combination lock and gets greeted with high-fives by all the kids in the hall as she comes into school each day; she even knows all the kids names. Kevin (15) won a gold medal in a Special Olympics skiing slalom race and walked by himself to a local store during a family summer vacation in the country to buy himself a Coke– he can barely talk. And Ian (4) said, “Oh mommy, train tracks,” the other day, one of his first information sharing sentences.
What I love and hate about autism is that I get to work with an amazing collection of people whose strengths, sorrows, triumphs, and challenges are an unending source of inspiration to me. I hate it that, sometimes, my skills produce what seems like so little help, that the system seems indifferent to the needs of these children and their families, that we don’t know enough yet to make more of a difference. I love the opportunity to share these triumphs and see these wonderful young people make progress, grow, learn, and to watch their families thrive despite hardships and sometimes, help them make progress. Hearing these stories is what gets me out of bed each morning.
What gets you out of bed each day? Tell us your stories.