It has been a while since our last post. We have been extremely busy this summer and I barely have had a chance to sit down to compose a post.
We did run the race on July 4th, but it was a hard one. The heat definitely got to Ryan as it was about 82 degrees at 8am (and that is very cool by this Summer’s standards). He struggled. I felt very helpless as I knew it was hard for him. He sat down. He cried. It was just too physically demanding for him. I told him that the only requirement was that we finished. I didn’t care if we were crossing the finish line at 5pm, just as long as we crossed it. It took us about an hour for the 4 miles (we had never done a race that long before) but we did it.
Since this Summer has been the hottest one since we moved to Texas, I told Ryan that we were going to take a break from his training and pick it up again once the weather got cooler. I will be honest, that race scared me. And then this story scared me even more. The temperature in Texas has been consistently over 100 degrees and some days have gotten to 110. Heat exhaustion is not something to take lightly, and when it is difficult to communicate (imagine trying to spell your thoughts when your body is under assault–it is not easy), it is no wonder why I am taking the conservative route on the training and races for Ryan.
Later that day, Josh and his family came over. We had a great time hanging out and it was so awesome to meet Josh and Amy in person after many weeks of an online class together.
REALLY LOVED MEETING JOSH. I HOPE TO DO MORE CLASSES WITH HIM. LEARNING IS TOTALLY THE BEST.
Towards the end of July, we celebrated Harry Potter’s birthday. The North Richland Hills Library put on some truly amazing events the week leading up to his birthday. Grace, Ryan, and I participated in an Escape from Hogwarts!, an escape room set up by the library staff including Monica, the librarian we interviewed last year! When they gave us the rules, they asked if we had any questions. Ryan asked, CAN YOU HELP US IF WE NEED IT? They responded with “Yes.” We went in and we escaped with 17 minutes to spare! It was so much fun!!! We had to hunt and find clues and solve puzzles to escape.
After the picture, Ryan said, HARD TO THINK I WAS ALMOST TRAPPED IN DETENTION!
On that Friday, we attended Harry Potter’s birthday party which included a lot of fun different activities at the library. We came prepared to party!
I wanted to share this fun anecdote with our readers. As many of you know, Ryan’s favorite character of all time is Mickey Mouse. I will forever be reminded of this by Ryan’s interaction with Mickey at Disney World last year that Randy caught on video and the video essentially went viral. The video actually has gotten some traction again since it came up in several people’s “Facebook Memories” from one year ago on August 1st. Well, I saw some Mickey “Goldfish” at Target recently and bought them for the kids. Every time Ryan would eat them, I would find something like this:
I finally asked him why he kept leaving the Mickeys out.
BECAUSE I LOVE HIM TOO MUCH I CAN’T EAT HIM.
I asked him if he was joking and he replied YES.
I then said, “Seriously, what’s the reason?”
CAN’T DO IT MOM.
So the real reason that we have been so busy is that Ryan has started Speech Therapy again for the first time in over 4.5 years. Ryan was really down in the middle of July. His demeanor seemed sad and lethargic. He spelled I AM STILL TOO SAD THAT I CAN’T TALK and TOO WANTING TO BE ABLE TO SPEAK. We have been trying to still encourage speech with Ryan, but if I am being honest, I had no idea how to start. We were trying to take some advice from Soma by firmly patting Ryan’s back to get him to start making purposeful breaths, but I still felt so lost.
When we spoke at a TACA Workshop almost 2.5 years ago, I was intrigued by Rebecca Dana, one of the other speakers besides us. She is certified in PROMPT Therapy (which is different from Rapid Prompting Method). I thought to myself, if Ryan ever wants to pursue speech therapy again, I am taking him to her practice. So when Ryan brought up wanting to speak again, I pitched the idea of meeting with Rebecca at her practice. So we did that.
Rebecca was very respectful of Ryan and knew that he learned and communicated with RPM. We met with her and another speech therapist named Shannon and both Ryan and I thought that it would be a good fit.
The way that I am describing this to people is to think about if you had lost the ability to walk over 10 years ago and you wanted to relearn how to do it. Your muscles would have atrophied and become very weak with nonuse. The same goes for your mouth muscles and diaphragm. Ryan has not used those muscles purposefully for over 9 years. He has a lot to relearn and strengthen. Rebecca and her team are doing just that.
The best part is that Ryan can have a say in this. He has told me many times since we began 4 weeks ago, that IT IS HELPING ME, MOM. He will grab my hand or the therapist’s hand to manipulate his mouth to form sounds. He sits in a chair for 30 minutes and allows the therapist to move his mouth, put fingers inside his mouth and around it, push on his stomach, and hold his head, all because IT IS HELPFUL. This in itself is amazing.
The first day, Ryan had a flight or fight response to medical gloves. I believe that he associated them with doctors/dentists/pain. Rebecca told me that my homework was to desensitize Ryan to the gloves and she handed me 5 gloves to bring home. That night, Grace and I chased Ryan around the house wearing gloves. I blew up the gloves into balloons. It worked. He allowed Rebecca and Shannon to use them the very next session. This kid is motivated.
Ryan goes to WalkEZ TalkEZ 3 times a week now. We drive 45 minutes there and 45 minutes back because I believe in Rebecca and her team and because Ryan really wants this. I have often told Ryan that he and I may never be the best at anything, but no one will work harder than we do. Ryan and I do the exercises at home. We do this twice a day on non-therapy days and once on therapy days. Ryan has made progress. This will take time, but I remind him of RPM, bike riding, handwriting, running, and independence on the boards and in life skills. He has mastered some of these and others are still a work in progress, but he is making progress every day because we work at it.
And we won’t stop working.
***A special thank you to all of you who read, commented, and shared our last post. In addition, thank you to The Mighty, a disability site, that reprinted our post so that our message got out to a much broader audience.***