Sunday, August 25, 2013

The Return of Good Year Alex

When I started writing One Autism Mom’s Notes over three years ago in June 2010, Alex had reached a stage where he was the best he had ever been cognitively, socially, and behaviorally. After years of various interventions, including speech, occupational, and biomedical therapies, he had made significant gains that made our lives the most normal they had been in years. For example, we could take him to restaurants and shopping and do many things as a family that we couldn’t do previously due to his unpredictable behavior. These improvements meant even more to us because we had gone through a very challenging stage a little over a year before that in which he would have aggressive and destructive meltdowns that would arise suddenly for seemingly meaningless reasons. After months of walking on eggshells around him, we were delighted to welcome the return of our sweet and docile son and felt blessed that he was so much better.

In fact, one of the reasons I started writing this blog was that not only did I have more time to write about our family’s life with autism because I didn’t have to constantly monitor Alex, but also I wanted to share hope with other families to let them know that life with a child who has autism does get better. We savored this time, knowing how far we had come, celebrating Alex’s finally mastering skills other parents may take for granted, such as learning how to speak and becoming toilet trained. After months of the halcyon phase, which we later referred to as “Good Year Alex,” we were disappointed to see a decline in Alex as he became lethargic and lacked the energy and enthusiasm to do much of anything other than lie on the couch. Worried that he was ill, we took him to the doctor, who ran tests and couldn’t really find anything wrong with him physically but suggested some nutritional supplements to boost his energy.

In a few months, Alex went from being drowsy all the time to being anxious and agitated, and we saw the return of the aggressive and destructive meltdowns we had seen a few years prior. However, these meltdowns were even more frightening because Alex was bigger and stronger, and the episodes were more intense. Once again, the doctor didn’t seem to have any real answers, and eventually we were led to hospitalize Alex for several weeks to have him placed on medications that lessened his anxiety and aggression. While we hated that Alex needed to take medicine that dulled his senses, we had to address his extreme anxiety and make certain that he couldn’t hurt anyone during his intense rages.

After more than a year, Alex has gradually made improvements with a few setbacks along the way, namely dealing with chronic yeast infections of his mouth that make him irritable. Over time, he has adjusted to his medications that now keep him calm but no longer make him as sleepy and dull-witted. This summer we have enjoyed taking him places, such as parks, the beach, and concerts—typical family activities that we were unable to do for many months because of his behavior. In addition, he has rediscovered the enjoyment of reading and watching television, two activities that he basically abandoned for a year, perhaps because he couldn’t focus enough to enjoy them.

In the past few weeks, we have noticed that Alex’s language has improved significantly as he not only speaks more often (At one point during the downward spiral, he barely spoke at all.), but he also speaks in complete sentences, asking appropriate questions and making insightful comments. In fact, his speech is probably the best it has ever been. In addition, he seems to have regained access to his phenomenal memory, telling us about things he remembers from years ago and sharing trivia that he has read. Also, his receptive language and attention span have clearly improved because he answers our questions right away instead of looking at us blankly or ignoring us.

While we are obviously pleased that his behavior and speech have made huge gains, the best sign of progress has been seeing Alex regain his joy. After watching him go through months of being upset or appearing to have no emotion, we are relieved and overjoyed to see him happy nearly all of the time, smiling, laughing, and enjoying life. Like all parents, we just want our child to be happy and healthy (or as Ed and Alex have decided, the three H’s: happy, healthy, and handsome), and we thank God that He has restored both of these in Alex, which in turn, makes us truly happy. Because of the trials we have been through, we know how precious the improvements are, and we are thankful for God’s intervention and for the people He has sent to help make Alex better. For a time, we mourned the loss of Good Year Alex, and now we welcome his return, maybe even seeing a more improved Better Year Alex. As we celebrate the progress, we also maintain hope for the future, knowing that with God, all things are possible.

“And after you have suffered a little while, the God of all grace, who has called you to His eternal glory in Christ, will Himself restore, confirm, strengthen, and establish you.” I Peter 5:10


marjorie said...

Oh, Pam, I'm so happy to read this! Love to you all.

K. C. Wells said...

There is nothing in the world like seeing joy on your child's face! That's what it's all about. ❤

Astrid said...

I just stumbled across yoru blog through a search for other autism blogs, and I must say I'm so happy for you and for Alex. I am an autistic adult, and I had to start medication at one point to curb my severe meltdowns. I know there are downsides to medication, as the first tiem I was put on it, it was used to manage me in a totally unsuitable environment. However, I'm now again on meds and have ben f or 3 1/2 years, and I am finding that they do help me. I m interested to read aobut biomedical strategies you'vé used too. Not that I could use them right now, since I'm in an institution, but just to know.

Pam Byrne said...

Hi Marjorie,
Thanks so much for your kind note--so good to hear from you. Hope you are doing well. :)

Pam Byrne said...

Hi K.C.,
What is that old saying, "If Mama ain't happy, ain't nobody happy"? In your house and mine, if kiddos are happy, Mama's happy, too. :)

Pam Byrne said...

Dear Astrid,
Thank you for your nice note. I'm glad you're doing well on medications. Some of the biomedical interventions we have done with Alex include a gluten-free and casein (milk)-free diet, vitamin B-12 injections, chelation therapy to remove toxic metals, and various nutritional supplements. Currently, we are focusing on antifungals because he has a stubborn yeast infection of his throat and mouth that irritates him. I hope you continue to get better--wishing you blessings. :)
Take care,

RachelRae said...

"Praise the Lord, O my soul and all that is within me- praise His holy name!" These kids have so much in them- its unlocking it- sometimes way more complex than others! Love, Rachel