Having a Child with Down Syndrome, Part CXXX: Birthdays

We have three birthdays pretty close to each other here, Alice and Evie especially close. For Stuart and Alice, we try to let them have completely separate “friend” parties. In other words, Stuart has his party with his friends and Alice is nowhere to be found and vice versa. We also try to have a bigger party for one and a lesser party for the other and alternate years. Stuart, I think gets this. I don’t think Alice does, but from her point of view, it’s still a party. This year was Alice’s small party and we asked her to pick 3 friends for a trip to Herell’s for ice cream.

She picked three friends and two were able to make it for the party: Luna and Jaq, and Alice was super happy that they both could make it. It was busy downtown with the March for Our lives protests, but that’s a very small price to pay for living in a liberal, politically active area.

Luna was very happy to be there and had a special present for Alice, which was a friendship necklace. Alice got one half of the necklace and Luna had the other. Luna was so excited and sneaky – she had her necklace hidden under her bandana and so badly wanted to show it, but waited for Alice to open her present first.

It was very sweet and I was very close to crying.

I’m glad that Alice picked these friends. It was nice that they came out for her.

Earlier in the day we did the shopping and because today was E’s birthday, we went to pick out a birthday card for her. For times like this, I try to give Alice a pretty free rein. I pointed her at the ‘Birthday for Mom’ section and set her loose. She looked over a half dozen or so before settling on one. I had to encourage her to read all the words to make sure that the card was really what she wanted, and then we were all set.

All in all, while it was a very busy day, I think everything worked out very well.


The Lion and the Beast

There’s a local organization called Whole Children that Alice is involved with. It’s an organization that provides enrichment programs that are geared with children/young adults with disabilities. Every year they do one program to put on a play, which is usually a mashup between two or more other stories. This year, it was the Lion and the Beast. Alice was cast as Babette, the feather duster. Alice had a great time and nailed all her lines.

And every play every year ends with a dance party, because why not?


Having a Child with Down Syndrome, Part CXXIX: Lab Work

Alice has Grave’s disease which messes with her thyroid. To check to see if the medication she’s taking is working, she needs periodic blood tests. Alice doesn’t like blood tests and I had to take her. When she got home from school, I immediately ushered her into my car and headed to the hospital and explained what was going on. Alice said, “I’m afraid of needles.” I praised her for using her words and told her that she could tell the nurse that too. I also promised her that if she was brave and did a good job we would go to the comic book store and she could pick out a comic book at the local comic book store, Modern Myths. I don’t like food as a reward, so a visit to a comic book store seemed like a good alternative.

We got there and checked in. Alice told the nurse she was afraid of needles and the nurse let her know that she would use the smallest needle that she had. That was nice. I was going to ask her to use a butterfly needle, but she was already on it. Nice. She came back with another nurse to help.


This smile didn’t last long. The next 15 minutes were spent talking and trying to calm Alice. They had a hard time finding her vein in the right arm and took several stabs before they gave up and switched. Alice addressed each nurse by name and was very assertive. “Hands off, Jenna!” I don’t have any pictures of the during or immediately after. I was too busy being dad. Alice needed kind words and reminders to be brave and hugs at the end.

And here we are. Alice picked out a Disney Princess comic book and we went home much happier than we were before.