Summer Has Begun!

And so.....school is out and summer has begun. As I have previously talked about, this is the summer before Davids's senior year and we have plans. I have been watching both the news and the internet for free and fun things to do on the weekends and during the week, and so far, we have stayed very busy. 

Last week we went to see his physical therapist (PT) Valerie and she checked out his braces and did an eval to see where he was and what goals we needed to set and implement in the next six months. It was overall a very positive eval, as she had to widen the tops of his AFOs (orthotics) because......wait for it.....his calves have gained muscle!!!!!!! While his legs still aren't huge, they have definitely gained some muscle mass this year. 

Valerie was also impressed with his upper body strength. For a kid with cerebral palsy, he has amazing arm strength and a lot of that is due in great part to his teacher Mrs. Pittman and his para, Ms. Tony at school, who have made sure he does stretching and works out his muscles every chance he gets. Their hard work is paying off in spades. His upper body strength is making it so that he can do a lot of his own transfers, like from his bed to his wheelchair and his wheelchair to his stander. My back is very grateful. The funny thing is, in these transfers his arm strength is almost more important than his leg strength. 

He also showed off his attempts at walking with a Kay walker. David walked with a Kay walker until his spine surgery. Since then he has walked with a gait trainer walker, as his legs and hamstrings were not strong enough for the Kay walker. We have been working on strengthening his legs though, and for Valerie, he stood, turned around, and walked a few feet with the Kay walker. Immediately, that became one of our summer goals.....to get his legs strengthened and his hamstrings stretched to maybe get some Kay walker mobility back.

While talking to Valerie about what I needed to do to help him progress this summer, it occurred to me that I work out at Planet Fitness and PF has some phenomenal machines that might be just what the PT ordered to get him stronger, looser, and more mobile, so I ask Valerie what she thought. She agreed that some of the gym machines might help him a lot. So I wasted no time in talking to them at PF and asking them if I could bring him up there a couple of times a week to workout. They couldn't have been nicer. I told the GM that I wanted to bring him at a time when there weren't a lot of people there to distract him and that he wouldn't distract. She asked why and I said that David can get excited and loud and her exact words were, "So?! That's not an issue." If I didn't already love PF for everything they offer, the fact that she said that, made me almost tear up. You have no idea what that level of acceptance means to a mom of a special needs child. So either this week or next week, David will be my afternoon guest at PF!

As most of you already know, David is non-verbal. Over his lifetime, he has been able to say a very few words or sounds that sound like words, but he has always been able to get his point across when he needed or wanted something. Years ago, he learned a few signs (in sign language), such as more, please, thank you, want, and yes, and they have all stuck with him. It was enough to help him communicate, but that is pretty much where it ended. Truthfully, some sign language is just not feasible for David because of his cerebral palsy. Then about 6-8 weeks ago, I noticed that David was making movements with his hands that were very deliberate and repetitive. Before I even had a chance to ask, Ms. Tony told me that she was teaching him more words in sign language and that his whole attitude and demeanor were changing. Why? Because he now had a way to independently communicate. This makes him a whole lot less frustrated when he wants us to know something. 

Now he has had communication boards and a communication system on his iPad in the past, but he always fought the boards and the system. He would learn what he was forced to learn, but he had no real desire to initiate communication with them. Ms. Tony though, did what she does best, and made it a fun game for him, and viola, he is starting to independently sign. She is so dedicated to this process, that she even came to the house on her own time to show me the signs and teach me, so that over the summer, David wouldn't lose any ground. With her assistance, David was so excited to show me what he knew and I was so excited to see that this was something that not only gave him more independence but that he also really enjoyed. So now daily, he and I are working on the new signs and our newfound communication. Of course his niece Willow is picking it up faster than any of us, so I have no doubt that she will be a great asset in Davids's learning, further on down the line. 

So far, David's days are full of daily at-home PT, stretches, playing on his iPad, learning new signs, playing outside with his niece and nephew, and just enjoying the easy-going yet busy days of summer. As the weather continues to warm, there will also be pool time, walks, and outings to varied places. 

In case you can't tell, I am so grateful to all of those in David's life who see his potential and continue to push him to be his best self and live his best life. I am also grateful to the GM at PF, who seems to understand that his need to be able to work out is great, but there may be a bit of a learning curve at first on keeping his excitement to a minimum and keeping him focused on the task at hand. Having people like this in our lives is simply invaluable. 

Well, the summer break continues forward. Hoping by the time school starts again, we will be able to look back and call this our best summer so far. Most of all, I love that having a special summer before his senior year, is such a mainstream thing to do and that we are both enjoying every second of it. 

Until next time, may you stay cool, have fun and live your best life each and every day. 

 

Starting the Summer with Steampunk

Well, I told you that we were going to try to do this summer and the next school year up right. So we started it all out, by going to the Old Cowtown Museum a week ago this last Sunday and attending the Steampunk Festival they had. 

David has actually been to Old Cowtown before and considering everything, it really isn't too bad getting him and his wheelchair around when we are there. Of course, there are buildings he can't go in because, in the late 1800s and early 1900s, nothing was wheelchair accessible, but all in all there is still plenty for him to see and be a part of.  

For those of you wondering what the Old Cowtown Museum is, click here.  It is a Museum in Wichita, KS that is set up as Wichita likely looked in the early days. Many of the buildings there are actual buildings from the time period that over the years have been moved there from their original locations. It is a fun place to go if you like history and I always have. 

They are open most of the year but summer is when they do their biggest business. Every year girl scout troops dress up in outfits reminiscent of Little House on the Prairie and give tours through all the buildings and there are special events all through the season. This last weekend was, of course, the Steampunk Festival, and I talked David's brothers, Wesley's girlfriend Sarah, and the grandkids into joining David and me on our trip to the museum. 

The weather was perfectly warm and overcast so as not to get too hot. Nothing out there except the Information Building and the Saloon are air-conditioned and David doesn't handle extreme heat or cold very well. Neither do I for that matter. 

David seemed to enjoy seeing all the people in their steampunk outfits. I think what I like most about steampunk is how much imagination can go into some of the costumes. I especially love the hats. There were kids and adults dressed up and not all of them were the actors. Some were just people who showed up to the event dressed in their steampunk finest because they simply LOVE steampunk. 

In many of the buildings, there were people dressed in a cross between steampunk and Laura Ingalls Wilder and they told us the history of the buildings or some interesting fact about the time period they were representing. This trip was especially fun because David's niece Willow and his nephew Kaiden were with us. While Kaiden is still a little young to really understand how cool an old printing press is, Willow is just at the right age to start appreciating its historical significance. 

On the main street, they put on a steampunk version of an old Dime Novel shootout. The guns were real but full of blanks and once again, the costumes were sooooo good. David loved the guns going off and would first look surprised and then laugh his belly laugh until he snorted. Since it was a shootout, this happened more than once. David was pretty entertaining for all of those around us.  

David's brother Zach, got to sword fight with a pool noodle wrapped in electrical tape, which seemed a little more on the steampunk side of things and a little less on the old west. It was fun to watch nonetheless and David also found this pretty entertaining too. Truth be told, I was fairly amused myself. 

Wes, Zach, and Willow all also got to try their hand at hatchet throwing. We learned that all of them could hit the target but not actually make it stick. This is perhaps a skill we need to work on at home.....or not. 

So at the end of the day, we got to see everything from kilts to corsets and feathered hats to goggles. There were high-wheeled vintage bikes and an old-time vintage motorbike with a sidecar. They had a live band dressed out in full steampunk garb playing everything from The Animals to the Drop Kick Murphy's. All in all, it was pretty awesome and everyone, especially David had a good time. He loves people and music and he seemed to really dig the clothes as much as I did. Imagine that!

I do wish that I had taken more pictures, but between finagling, the wheelchair over wooden planked sidewalks, and helping to keep up with a three-year-old, picture-taking moments were especially few, but the memories were made and that is all that matters. 

By day's end, David was exhausted as were the rest of us. He thoroughly enjoyed the experience though and especially enjoyed the whole family being there. It was a great start to the summer. I hope that there are more adventures just like this one as the summer officially begins. Who knows, maybe we can find another Steampunk event along the way. 

Until next time, here's hoping you stay cool, stay dry (especially if you are in Kansas), and that you find as many adventures as we hope to this summer.