Sunday, April 1, 2012

A New Kind of Autism Awareness

Today marks the beginning of Autism Awareness Month. This week the Centers for Disease Control released new statistics regarding the prevalence of autism, which has nearly doubled in the past five years. The new figures indicate that 1 in 88 children has autism; considering that autism is much more prevalent in boys than girls, this means approximately 1 in 54 boys has autism. Of course, the government agencies that have no real answers as to what causes autism—other than they’re certain vaccines are not responsible—can only point to better diagnosis as a reason for this dramatic increase. Despite these staggering numbers of children diagnosed with a lifelong condition that can significantly impair the quality of life for them and their families, as well as costing thousands of dollars per year—often not covered by insurance—for various therapies to address issues related to autism, much less money is spent on research for autism than other conditions that affect children.

As far as children with autism go, Alex is one of the fortunate ones. Overall, he is quite healthy, unlike many who suffer from chronic infections and painful intestinal problems. He sleeps well, although aided in his younger days by the natural supplement melatonin, in contrast to many children with autism who wander around all night, unable to sleep. Despite a somewhat limited diet because of his sensitivities to glutens and milk products, Alex eats a variety of foods and enjoys them heartily. Many children with autism eat only a limited amount of foods, bothered by smells, tastes, and textures. While some children with autism are nonverbal, Alex can express himself—albeit with some difficulty—verbally, and he has been an avid reader since he taught himself to read as a preschooler. Even though we spent several years potty training Alex, we are thankful that he can toilet independently while others with autism must wear diapers.

Although many families struggle financially to provide the money needed to fund needed therapies, such as speech, occupational, physical, and psychological, we have somehow always found the money on our teachers’ salaries to pay for anything Alex needed. Nutritional supplements needed to supplement dietary needs for children with autism are not covered by insurance and can be quite costly; we have been fortunate that the Lord always provided the money for us for these necessities. In addition, we are blessed to have jobs that allow one or both of us always to be home with Alex; I teach in the morning, and Ed teaches afternoon and evening classes. This ideal schedule permitted us to homeschool him so that he could receive a truly individualized education program that addressed his strengths and weaknesses and met his needs. Perhaps the greatest blessing—as I know we have things easier than other parents of children with autism—has been that Alex’s personality has been easygoing and docile, and he has generally been quite cooperative. Other parents of children with autism often struggle with behavioral issues and work diligently to make their children compliant so that they can function and learn. In the autism lottery, we seemed to hold a winning ticket.

The past six months, Alex has been dealing with increasing anxiety, probably due to hormonal changes. As I have mentioned in previous blog entries, anxiety leads to increased adrenaline in Alex, which leads to aggression. At twenty years of age, he’s six feet tall and extremely strong when he’s agitated, which makes him nearly impossible for Ed and me to handle. After a trip to the emergency room in December to have him sedated after a particularly difficult meltdown, his medications were changed, and we hoped for the best. However, the medication changes at best were not helping, and at worst they seemed to be making him even more anxious. After a visit to a psychiatrist, who suggested that the Abilify Alex was taking could be giving him akathisia, or inner restlessness, we reduced his dosage from 5 mg to 2 mg. That morning, he had another terrible meltdown, so we again took him to our local emergency room, where a nurse candidly informed me, “We suck at psychiatric care. You’ll have to take him somewhere else.” After waiting for nearly two hours for him to be assessed by the local mental health facility, a doctor told me that when she spoke to them on the phone they had already told her that they would not admit Alex to their facility because he has autism. All they could offer was that we could take him to facilities more than an hour away. With that, we went home feeling frustrated and helpless. Fortunately, Alex had calmed down without having to be sedated by injection, and he stayed calm the rest of the day.

That afternoon, I began searching online for facilities that might address his anxiety and need to be constantly monitored during medication changes. I found two in neighboring counties and wrote down their information for future reference. I didn’t realize how soon we would need my notes. That night at 2:00 A.M., Alex awakened agitated and aggressive, attacking Ed forcefully. Fearful that one or both of them could be hurt badly, I called 911 and my parents; the police, paramedics, and my parents all came to our rescue within a matter of minutes. Two strong but kind policemen were able to restrain Alex in handcuffs while he continued to yell nonsensical remarks. The paramedics apologetically explained that they were not able to give him any sedatives. However, the policemen were willing to hold Alex still while I gave him a shot of Ativan I had on hand for emergencies. Moreover, they stayed with us until the medication kicked in and Alex was calm, allowing them to remove the handcuffs. The compassion of these professionals, who told us to call them again if we needed them, helped tremendously in a horrible situation.

Once Alex was calm, I called the 24/7 phone number for the Behavioral Medicine Department of St. Anthony Memorial Hospital in Michigan City, about a half hour drive from our home, to see if they would take Alex. The woman on the phone assured me that they did treat adults with autism and told us to bring him to their emergency room, where he would be assessed before he could be admitted to Behavioral Medicine. Since Alex was drowsy from his middle of the night awakening and the Ativan shot, I suggested to Ed that we take him to St. Anthony’s while he was still calm so that we could get him the help he clearly needed before we had another major meltdown. Ed agreed, and with a quick gathering of everything we needed to take with us, Ed and Alex set out in our car with my parents and I leading the way in their car with Google directions in hand at 4 A.M. on our way to St. Anthony’s. This was just the beginning of a nearly two-week hospitalization for Alex, which was the hardest yet best decision we had ever made as parents. Fortunately, God had provided us with an outstanding facility and staff who could give Alex the care and compassion he needed, as I will detail in upcoming blog entries.

And so for us, as with most parents of children with autism, the day-to-day life of raising a child with autism is much more than one month of media coverage, wearing brightly colored puzzle-piece ribbons, Autism Speaks’ campaign of “Light It Up Blue” by shining blue lights on April 2nd, and new autism prevalence statistics that should shock and motivate people that this is an epidemic that cannot be ignored any longer. For some families, autism means mortgaging their homes to pay for therapies their children desperately need. For others, autism means tremendous family stress that leads parents to divorce. For us, it’s driving our severely anxious adult son to a hospital thirty minutes away because no local help exists, praying that we get him there before he has another meltdown and praying that they can help us find the sweet young man we know exists behind the aggression caused by brain chemistry that needs to be fixed. Welcome to Autism Awareness Month; please fasten your seat belts, as we seem to be experiencing some turbulence.

“When darkness overtakes the godly, light will come bursting in.” Psalm 112:4


K. C. said...

Oh, Pam. I'm in tears thinking about what a scary and difficult night that must have been for all of you. Being unable to control how he's feeling or his own reactions has got to be confusing and frightening for Alex. I'm so glad that St. Anthony's was there for you; it's a terrible injustice that there isn't anything closer. After all, with the statistics what they are, you're not the only family in the area living with autism. My hope is that each day brings a greater awareness of what needs to be done to help families who live with autism, and also that Alex continues to improve and thrive at home. Sending you love!

Heather St. Clair said...

Wow, what a story. Thank you so much for sharing it with us. I have read a lot of posts today about how everyone has differing opinions especially during this particular month but I think all in all we are all here for each other. We all know the heartache and the joys that come with our children.

Pam Byrne said...

Dear K.C. and Heather,
Thanks so much for your kind comments. The support of family, friends, and fellow parents of children with autism have helped us during this difficult time, and we are grateful for the kindness and understanding people have shown. We just keep praying that Alex will return to his gentle, docile self.
Take care,