Sunday, December 17, 2017

Twenty-six

Yesterday Alex turned twenty-six. To be honest, celebrating birthdays with a child who has autism presents challenges. Over the years, we’ve learned to keep things as low key as possible so as not to overwhelm him on his special day. Moreover, I try not to focus on the milestones I had hoped he’d reach by each increasing age and instead be grateful for the progress he has made in the past year. Twenty-five was a good year for him, despite the bad bout of thrush he's had and the diminished appetite he’s had for the past seven months. Alex has shown maturity in handling anxiety, learning when he needs to talk about his feelings and when he just wants to be alone to figure out his thoughts. He has also developed his social skills to the point we are able to take him many different places, such as concerts and sporting events, and know that he will behave himself and enjoy the activity. These are blessings we don’t take for granted.

Perfectionist that I am, I wanted Alex’s birthday to be perfect. For weeks, I have thought about what gifts he might enjoy. He rarely if ever offers any suggestions, so I’m basically on my own for coming up with ideas. Nonetheless, Internet shopping conveniently allows me access to a wide array of products that suit his interests. For my Chicago Cubs fan, I ordered a Cubs drinking cup, a Cubs 2018 calendar, and an Anthony Rizzo ornament for our Christmas tree. Since he loves Wheel of Fortune, I ordered a hat and t-shirt with the Wheel of Fortune logo. In addition, I found him a Boogie Board Jot electronic notepad to write his beloved lists and a fun dice game to play. Of course, I also went with the annual tradition of getting him his cherished World Almanac.

Although he was pleasant while opening his gifts, he was also a bit subdued. Because his fine motor skills are poor, opening gifts isn’t easy for him, and he has to destroy envelopes to remove the cards inside. Nonetheless, he never complains about how his lack of dexterity makes getting to the gifts more difficult and seems to prefer wrapping paper to gift bags. After he opened his presents and thanked us, he trotted off with his World Almanac and retreated to his bedroom to read.

As Ed and I checked on Alex throughout the day, he seemed to want to be alone to read his new book, but he complained of stomachache a few times and asked for baking soda water. He had taken his regular Friday dose of antifungal for thrush the day before, so we assumed that the upset stomach was probably related to that. Knowing that he probably wouldn’t eat much but wanted his favorite food, shrimp, for his birthday, we went and got Chinese takeout food. Even though he loves shrimp kow, he only ate a few bites before telling us he was full. Ed was able to convince him to eat a little more, but he wound up eating his standby dinner of the past few months of scrambled eggs and applesauce instead.

Because Alex has limited his diet to only a few foods, I have been wracking my brain to think of a birthday cake––gluten-free and dairy-free as well––that might appeal to him. Since he loves applesauce, I decided to bake an apple cake from scratch with a very soft texture and an appealing smell, thanks to the cinnamon sugar on top. I even cut the apples into tiny pieces so that they would be easy to eat. To make the cake more special, I found coconut milk whipped topping that tastes just like Cool Whip. Despite my best-laid plans, Alex took one bite of the delicious cake and spit it out. After making sure he didn’t want any, despite my usual patience, I took the cake and threw it in the garbage in frustration. Fortunately, I had made another cake with regular milk and flour so that my parents, who had come for Alex’s birthday, and Ed and I could enjoy the tasty treat. Nonetheless, I was disappointed that Alex didn’t like the cake I had made especially for him.

Although he was calm and pleasant, Alex didn’t say much while my parents were here, and eventually he went up to his room while the four of us visited. Before they left, Ed went up to get him to say goodbye, expecting to find him resting. Instead, he discovered that Alex was having a fine time doing what he wanted to do. In a rather odd combination, Alex was watching You Tube videos on his iPad, specifically Bruce Springsteen singing “Santa Claus Is Coming to Town” while reading a New Testament Bible my aunt and uncle had given to him a while ago. Even though he was enjoying this alone time with the Boss and the Bible, Alex came downstairs to say goodbye to my parents nicely.

Perhaps Alex doesn’t want to make as big a deal about his birthday as I do; he seems more excited about the upcoming birthday of Jesus instead. While I thought I had let him down because he didn’t seem as enthusiastic about his birthday gifts, meal, and cake, I may have misinterpreted his behavior. When he was getting ready for bed, I asked him what he liked best about his birthday, and he told me it was the shrimp. (I shouldn’t have been surprised since shrimp is one of the special things in life Alex rates at 100%.) When I asked him what he liked least (anticipating the cake he spit out disdainfully), he earnestly told me, “Nothing.” This was certainly reassuring for me.

As we approach Christmas in the coming days, I need to remember that life––especially life with autism––is not going to be perfect, no matter how much I plan. However, Alex doesn’t expect perfection from me; he’s content with a good book, a familiar tune, and the peace that comes from knowing that we love him and that God is watching over him. During this Christmas season, may we all know that simple joy, peace, love, and faith!

“Look! The virgin will conceive a child! She will give birth to a son, and they will call him Immanuel, which means ‘God is with us.’” Matthew 1:23

4 comments:

Marjorie said...

Happy birthday to Alex! I'm sorry the cake didn't work out after all your hard work -- you did your best! Merry almost-Christmas to your entire family.

--m

Adelaide Dupont said...

Alex:

good to know you remember the reason for the season. [Jesus and his birthday].

Emmanuel - God with us.

I also had Chinese food this weekend - in my case Szechuan beef. There are several good seafoods in our restaurant.

And yesterday I had confit duck.

Pam Byrne said...

Hi Adelaide,
Happy to hear that you are enjoying the holiday season. Hope you have a wonderful Christmas!

Take care,
Pam

Pam Byrne said...

Dear Marjorie,

As always, it's so nice to hear from you! Hope you and your family are well and enjoying the holiday season. Wishing you many blessings in 2018!

Fondly,
Pam