September 03, 2013
What is autism and what does it mean when you hear that your son may have this diagnosis? These words first ran through our heads in 2003, when our son Skyler was 2 years old. However, our story of highs and lows, diagnosis and recovery, does not start on that day, as it may for so many other families, our story started 20 weeks into our first pregnancy.
It was the year 2000 and the wonderful moment when we saw our son on the ultrasound screen went from glory to confusion in a heartbeat. The technician looked, looked again, looked from a different angle and then left. Our doctor arrived, he looked, printed a bunch of pictures and then he left. We had three more doctors do the same over a short 10-minute period. They tossed around all sorts of words that had no meaning to us, but each seemed darker and scarier than the last. This process of doctors, ultrasounds and lots of concerns went on for the duration of the pregnancy. Over the course of the pregnancy, we watched fluid build in our son’s tiny brain. The diagnosis went from chlorid plexus cyst, to enlarged 3rd ventricles, to hydrocephalus. There was even an appointment with a geneticist who gave us information on what a severe hydrocephalus prognosis may be and provided information on how we could terminate this pregnancy. It was a pregnancy filled with the highest of highs and the lowest of lows. Had we done something to cause this was rarely ever spoken, but always in the back of our minds.
Skyler was brought into this world in a normal, but very crowded, delivery room. We had the regular nurse and doctor, and an additional PICU crash team standing by. There is a picture of me, arms stretched out, Skyler holding one finger while being examined by a team of nurses as the doctors look on, and Tracy holding my other hand while a different team of nurses and doctor work on her. Skyler’s APGAR score was initially a 7 and raised to a 9. He looked great, was stable and would stay with us! An MRI the next day showed the fluid had drained and the hydrocephalus had resolved. We took Skyler home and started our life as a family.
But just two weeks later, I was holding our new baby boy, surrounded by paramedics and police offices. Minutes before, our beautiful baby had a seizure, not a grand mal like you see depicted on TV, but an atonic seizure, where his whole body went limp in my arms, his eyes rolled around, and he was just gone. It lasted for what seemed like an eternity, and he was unresponsive to all of us for at least 15 minutes. This event shaped what our reality would be for the next six years. As horrifying as it was, I think it may have saved our little boy.
I am not a doctor; I do not know what autism is or what causes it. Skyler was first diagnosed as PDD-NOS somewhere around age 2 1/2. The neurologist who diagnosed him is the doctor we met at the hospital when they admitted him after his first seizure. The diagnosis came after Skyler’s speech therapist suggested there was more going on than just a normal delay in his development.
Our journey to the PDD-NOS diagnosis started in the ER after the seizure. Skyler had his first therapy at 6 weeks old, provided by the Regional Center from the state of California. He was being treated for seizures with phenobarbital, and was getting occupational therapy. After a few months, they added physical therapy, and by age 2, he was receiving speech therapy. We believe that this intensive early intervention played a key role in Skyler’s recovery, but the Regional Center alone was not going to get the job done.
It was not long after the PDD-NOS diagnosis that the engineer in me went into overdrive. I needed to talk to people, learn and understand what this diagnosis meant for our family. That is where we found TACA, which provided Tracy and I with the tools to save our son.
When we walked into our first TACA meeting on a Saturday morning in a church in Costa Mesa, we were greeted by smiling, happy people. As new faces in the crowd, we were swooped on within a heartbeat. We were introduced to people we needed to me, given a handbook full of info, and set on a path of educating ourselves on what we needed to do to become the best advocates we could be for our son.
Skyler’s PT, OT and speech therapy continued from Regional Center until age 3. At that point, he was not speaking, threw the worst tantrums you can imagine, and showed many classic symptoms of autism. We needed another evaluation before transitioning to the school system. The evaluators was comprised of a team of experts from the school district, as well as therapists, psychologists, even a neurologist. Following the evaluation, we had a meeting with the school district which became the single biggest motivator for Tracy and I in advocating for Skyler. TACA had helped to prepare us this pivotal moment. We were educated, had all our evaluations, recommendations and, more importantly, we had an understanding of our rights, and knew the key phrases to use to get the results we knew our baby needed to have a chance of coming out of his shell.
The meeting with the school district was about 10 years ago, and it provided us with the motivation to never just accept anything or any outcome that people are willing to label our son with. The details of the meeting have faded with time, except for one single moment when a school district employee asked me what our expectations for our son were. I told them that I expected that Skyler would start Kindergarten when he was supposed to, in a normal classroom with his peers. Her reply was, “Sir, you need to have realistic expectations for your son, and come to grasp with the reality of what an autism diagnosis means for him.” The tools TACA provided us came into full effect at this point. We were not going to roll over and just let Skyler be whatever they said he would be. We left that meeting with an agreement for Skyler to continue with therapy, and he was placed in a special school that rotated him through stations. Tracy went to school with him every day for about a year. They worked on sensory, speech, OT, PT, for 4 hours a day, 5 days a week. What a mom! Skyler and I are so lucky to have her -- she stopped working to just focus on Skyler.
At age 4, Skyler transitioned to a class in the school district and -- I do not understand why or how -- it was like someone had flipped a switch. He started talking, first a word, then two and before long, full sentences…and he has not stopped! Skyler completed that year thriving, just like his mom and I knew he would. When it came time to start Kindergarten, he went into the typical class with all his peers. Skyler had special help, he had the plan that the school district had agreed to, and he worked hard. Tracy was home with him every day to help push him harder.
Skyler is almost 13 years old now. If you met him, you would have no idea that he fought so hard for so long to get where he is today. Last year, he received 4 A’s and 2 B’s in the 6th grade, but completely bombed his standardized tests. He still works hard to do what others seem to accomplish effortlessly. He has a plan with the school district to get him some special help with test-taking and a few other minor things. This year, Skyler was the Assistant Senior Patrol Leader in his Boy Scout troop, and acted as the Senior Patrol Leader at summer camp this year. If you know scouting, being SPL at summer camp is not an easy job, and he did it very well, with his head held high and always making sure the whole troop had an amazing experience.
There are people who tell me Skyler never had autism, that he suffered severe brain trauma due to the hydrocephalus he had in utero. I know that my son was lining cars up in long organized lines, banging his head against the wall and floor, flapping his hands while rocking back and forth, throwing tantrums that could break the strongest willed folks among us, not making eye contact, etc. I know that my wife Tracy’s dedication to Skyler – with the assistance of the therapists, friends, Regional Center and TACA -- is what helped Skyler recover. Long years of therapy and a mother that was willing and able to dedicate her soul to this baby healed him and has provided him with an opportunity to be an amazing productive member of society.
If your child has received an autism diagnosis, be strong and do what is right for your child. Get them intervention early and get as much help as they will provide, then demand more. Don’t be afraid to take your child to the grocery store and work through the tantrums. Turn the evil negative things people say under their breath (but loud enough to be heard) as motivation and confirmation that you are doing the right thing. Expose your child to the sensory overload of the world so that he or she is prepared for school. Take that negative energy other people are so willing to express and turn it into motivation to get out of bed and face another day of improvement. You are your child’s biggest supporter, so you must advocate loudly and often, because they will only help those families who are asking for help.
I am no doctor, but I know that children can recover from autism. It takes early and intense intervention to change the path a child is on, but it can and does happen. Tracy and I were not going to roll over and just accept a diagnosis of a lifelong disability without putting up a fight, and it is a fight that we still fight, just much more quietly now. Things do not come as easy for Skyler as for others, but he makes up for it with his charismatic charming personality, his amazing compassion for other people, and his ability to persevere. Skyler is my superhero in every sense of the word. Skyler’s story of recovery is not a miracle of science or medicine. It was not created by some scientists in a lab. Skyler’s story of recovery is the story of love, dedication, community and perseverance. His story is of never accepting anything, fighting for what can be, and utilizing every resource that is available to get the job done.