Sunday, October 21, 2012


Since Alex came home from the hospital in June, he wants to be with Ed or me almost constantly. I think he is making up for lost time, the days he spent in the hospital where we could only see him for an hour or two during visiting hours. Our presence seems to reassure him that he is, indeed, finally home. In fact, the rare times that he is alone, he’ll come looking for us and ask us to “visit,” clearly a reference to his hospital stay. During the months leading up to his hospitalization, he wanted very little to do with me, which was sad and confusing, as he would inform me, “Mommy is leaving now,” which was essentially telling me to “bug off” and leave him alone. Instead, he just wanted Ed to take care of his needs, which I figured was some type of developmental phase where he needed to separate from his mother and identify with his father. Nonetheless, I missed him for a long time.

Now, I spend several hours a day with Alex at his request. Most of the time, we just sit together--sometimes he’s sitting and thinking while I’m reading; other times, he has me read aloud to him. While he used to spend hours reading alone, I think the medications to keep him calm also may make focusing on reading difficult, so he prefers listening to me read instead. Also, I think he enjoys this as an activity we can do together, rather than the solitary act of reading. Sitting with him is an interesting experience because I gain insights into how his mind works as he comments on various things. For example, he often blurts out random foods: guava, cupcakes, salami, bananas, meatloaf, etc. Most recently, he’s added porridge to the list of foods, inspired by his recent revived interest in the story of Goldilocks and the Three Bears, I’m sure. I suppose he’s frequently thinking about what he wants to eat because he’ll also say the names of random restaurants: Noodles and Company, Culvers, The Coop, Martini’s, etc. Although the food blurting continues throughout the day, the restaurant blurting usually only happens in the afternoon, prior to dinner. I guess if he doesn’t have a lot to occupy his mind, food is as good a topic as any. Alex has always shown an interest in food, watching the Food Network Channel from the time he was a toddler and referring to all of their chefs on a first-name basis. Fortunately, his appetite and willingness to eat a variety of foods have always been excellent, and he has not been affected by the dreaded medication side effect of potential weight gain, maintaining his slender, lanky build.

Another activity Alex requests is making random lists. He’ll give me a topic, such as animals, NASCAR drivers, or famous people’s ages, weights, and heights. Sometimes, we’re able to come up with the information on our own, and other times, we have to do Google searches to get the data he wants. Yesterday, we worked on coming up with an animal for every letter of the alphabet. I was amazed how quickly he could come up with the names of animals, often unusual ones, such as armadillo and zebu, especially since he’s never shown a great deal of interest in animals, unlike most children. The only letters that stumped us were u, v, and x, which led us to a Google search for those elusive animals to complete our alphabetical list.

Besides Google searching, we put my laptop computer to good use for other shared pastimes. Alex has always enjoyed online shopping, especially searching for books and gadgets on Amazon. Lately, he’s been checking out everything from NASCAR driver banners to hang in his bedroom to books about time to talking clocks. Fortunately, he had not spent all the money in his Amazon account that his aunts and uncles gave him last December for his birthday and Christmas, so he’s been able to purchase many of these items his heart desires. Of course, he likes to comparison shop, making sure we get the best deal, and this allows him to savor the experience even longer. In addition, I always make him wait twenty-four hours before making his final purchase to make sure that’s how he wants to spend his money, which is another way to make the shopping fun last.  Another favorite website we explore together is You Tube, primarily to watch music videos of his favorite singers. This week, we’ve watched nearly all of country music singer Shania Twain’s videos, and I introduced Alex to one of my guilty pleasures, videos from the 1970’s television show and its manufactured musical group, The Partridge Family. While Ed will probably think I’m corrupting Alex by exposing him to this kind of pop music, I feel Alex needs some relief from the Bob Dylan music that he listens to with Ed.

At some point, Alex’s need to be with Ed and me almost constantly will fade, and we will respect his wishes to be alone again. However, until that time, we will stay close at hand, entertaining him and just being there for him. Sometimes, I will leave him for a few minutes to get something or do laundry, only to find he has followed me, waiting patiently for me to rejoin him. Yesterday, as I was putting clothes in the washer, he followed me down the stairs and asked me to come stay with him. After I started the washing machine, I followed him and honored his wish to join him, which made him happy. Wondering when he thought he might get tired of having me around, I asked Alex how long he’d like me to stay, thinking he’d give me some exact amount of time. Without hesitation, he replied, “Stay forever.” Oh, Alex, I wish I could stay with you forever; I just pray that I’ll be with you as long as you need me.

“And I am sure that when I come, Christ will richly bless our time together.” Romans 15:29


SueB said...

I read your story in Woman's Day. Your story is inspiring. Many thoughts and prayers for you, Ed and especially Alex.

K. C. Wells said...

Oh, that last line. xoxoxo

Joan Trudo Steckelberg said...

Hi I also have a son with autism. We have had no less than a miracle at our house. My son decided one day last Feb. to "eat healthy" as he put it. He ate only fresh meat, vegetables and small amounts of fruit and orange juice (no corn syrup). His moods have gone from explosive to the sweetest young man ever. His eyes have gone from hazed to clear. He doesn't need his meds any longer. It has truly been amazing. It has also been heart breaking to think for 22 of his 23 years he's been a prisoner of overmedication via his food.
We did try "gluten free" when he was younger and altho it helped some didn't do enought especially when he hit adolescence.

I can see why. All grains contain gluten like proteins as does milk and to those very sensitive, eggs, coffee and other items can affect them. The only thing he has with artificial coloring is a mexican coke now and then (cane sugar).

It's absolutely amazing to see the new Brendan. Please message me if you want to see before/after photo. Our hope is to help others.

a couple sites that helped me.

Pam Byrne said...

Dear SueB,
Thank you for your kind comments and especially for your prayers, which mean so much.
Take care,

Pam Byrne said...

Dear K.C.,
As always, thanks so much for your friendship, love, and support. :)

Pam Byrne said...

Dear Joan,
Thank you for sharing how well your son Brendan is doing; that's very encouraging! I think diet is crucial to health, and it's wonderful that Brendan has responded so well to the changes in his diet. Alex has been on a strict gluten-free and casein-free (no milk products) since he was seven years old. He has been remarkably healthy, and I think diet has been a large part of that. The recent setbacks we've seen seem to be hormonal in nature, and we believe that they will pass in time. We're just thankful that medication is helping him cope and feel better. Best wishes to you and Brendan--I have so much admiration for autism moms like you.
Take care,

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Pam Byrne said...

Dear adipex-p,
Thank you so much for your nice note and compliments on my blog. I appreciate your kind words.
Take care,