David has officially, and sadly, joined the zebra side. I admit I was shocked when he ended up diagnosed with Ehlers-Danlos Syndrome right alongside Joshua and me when we saw the genetics specialist last summer. Up until recently though, I’ve been able to put that reality on the back burner as he wasn’t symptomatic in day to day life.
Then the pain complaints started coming in. Same spot, frequently, no obvious injury to account for it. Started watching him closer and found the source. His elbow (now both are doing it) was popping in and out of joint whenever he would straighten his arm too fast or too often in one sitting. This means it happens a lot when he’s practicing his martial arts, and it also happens a lot when he gets excited and starts flapping his arms in stim mode. It even happens to him while playing with his trains or when reaching for something. :(
Official therapy evaluation is next week to see what can be done, if anything. Most things would require his cooperation and understanding which so far he hasn’t been able to give very well in this area.
Today was pretty laid back for us in comparison to how busy we have been lately. We all got to sleep in a bit, and I was able to get some work done while the boys studied and played on their own. Then, we all packed up in the car for David’s martial arts class where Joshua made a couple of new friends and David earned a star for doing good deeds. ^_^ Afterwards, I took them to Taco Shop for dinner and we chose our usual back corner table where the boys have a bit more freedom to move around if needed without disturbing anyone. While there, David decided he wasn’t going to speak anymore and started using sign language.
At first it seemed like he was overwhelmed, then it turned into looking like he was just preferring to use sign at the moment. Either way, it got in some practice and some refresher/review work for us both so I didn’t mind. He still depends on sign when he gets too overwhelmed to speak or is encountering something new so I try my best to keep us both as fluent as possible in it. While signing though, he caught the attention of some boys whose family came in after us and chose the table next to ours. They watched out of curiosity a lot and afterwards, our two families had a chance to greet each other and the boys and their mom got to learn some signs from David who was pretty excited to share them. ^_^
We’ve ended the day with a quick run to the store and back home for some Octonauts and a small snack while cuddling on the couch together. It was so nice to be able to have a slow day together for a change. : )
He let me in! He let me in! ^_^ David’s communication is largely based on him manipulating different phrases, words, memorized conversations, and some movie scripting to respond and interact with those around him. This is great and has helped him a lot, but there have been several times when it was painfully obvious he didn’t have a script for what he was needing/wanting to say and communication would suffer. This problem has led to him rarely opening up on deep thoughts, dreams, or feelings.
Until this morning. ^_^ The moment was brief but it definitely happened. :D David kept scripting some line about breaking up and inserting Thomas’ name in it. After some prompting, cuddling, and a bit of encoucouragement, I suddenly found him sitting on my lap, staring off in another direction with an occasional quick glance at my face, and telling me why he loves Thomas so much, and what’s so special about Woody, and even why he has started drawing and watching the Rescue Bots so obsessively lately! This is HUGE for us! The things he was saying had no basis in any script or previous conversations because it contained nothing of what one would typically expect him to say about those characters so he hasn’t heard anyone say it yet. It was all him! 100% David and his feelings, thoughts, and insights! ^_^ And it was beautiful. <3
My son got to be a part of a big ceremony for belt advancement at his martial arts school last night. :) He just earned his first step up and is now proudly wearing a white belt with an orange stripe. ^_^ He got a cool certificate of achievement with it too as well as a new book and a special patch to add to his uniform. Empower Martial Arts‘s Tiny Tigers program has been such a great addition to our lives here. David’s teacher and two others who have stepped in as mentors for him and to help him out have been helping David reach so many goals, his brand new belt being just one of them. ^_^ Last night was definitely a night worth celebrating and I couldn’t be more proud of my boy and how far he has come. <3
He still has severe Autism, his communication ability still is largely based in scripting skills and echolalia, he still has regressions that set him back, he continues to struggle with staying connected in “our world” so to speak, and many other issues. At the same time though, he has made a lot of positive ground overall and I have his teachers and mentors at Empower, and the programs they have helped me and David participate in, to thank for a lot of it. I even was able to trust David to walk to the car and retrieve something on his own! He was in sight the entire time of course and I was sitting ready for an emergency knowing he could run off on me, but the hard work, heart, and influence that his teachers/mentors Mr. Hahn, Master Beisel, and Mrs. Beisel have been putting into him paid off in a tangible way tonight with him successfully staying focused long enough and well enough to complete his mission without incident! ^_^ I am so very proud of David and am looking forward to more progress and celebrations. :) In the meantime though, here are some pictures to remember last night with. ^_^
Thanks to Educents, I was able to get the boys a fun surprise recently. Magnetic building blocks! They have been having fun with these since the second they opened the box. :)
Good morning everyone :) (and good evening to all my friends and readers in different time zones). I am actually up early for a change vs having been up all night. The boys just went to bed though after I made them clean up the mess they made while I was asleep. Nothing was broken though this time and they even stayed out of the trash can. Yay! ^_^ I call that a win over here. lol ;) Plus, it was nice to be able to get some desperately needed rest on my end. Finally shook the final symptoms left over from the major migraine I had the other day and I even shook the brain fog I have been struggling with lately. :) I don’t know how long this will last, but I am going to enjoy it for as long as it does. lol
As for the kids, yesterday they made a new friend. ^_^ I am embarrassed to admit that I didn’t think to catch her name (I was barely awake enough to watch them to keep David from running off or into the street) but I do know that she was kind, gentle, and a lot of fun for the boys. I got to meet her mom too and it turned out to be the sweet young lady I’ve gotten to see and say a quick hi to around here a few times while checking the mail or emptying the trash. Glad to discover that she’s in a nearby apartment and also that she has a little girl around the same age as my boys. :)
David and Joshua were pretty excited about it all too. She treated them kindly and with respect, even when they acted different or jumbled a bunch of social cues and situations. She also brought over her tricycle and scooter and showed them how to ride (thankfully she helped me convince them not to go past our porch/sidewalk boundaries). Yesterday was a great day to be playing outside too so the timing of them all meeting was perfect. : ) They played for at least an hour if not more and I smiled at all the laughter, giggles, and fun they were having together.
Thinking back to yesterday I can’t help but think about how special and rare moments like those are for my family. Something that seems to be so regular, nonchalant, and even ordinary for other families is something truly rare and special for us. Sometimes I admit that thinking of the differences and the challenges can make me tear up or get frustrated, and yes even angry at times. I am not going to lie, living the special needs life is a hard one. Between the cognitive, social, and emotional challenges of Autism and the physical ones that Ehlers-Danlos Syndrome bring into the mix, our life is definitely a far cry from what most would call “normal” and sometimes the reality of that hits hard and painfully.
Sometimes though, gratefully all that takes a back burner and I get to just smile and treasure the moment that we are in. The moment with all the laughter and play. The smiles and the giggles and the running around with another child completely care free and oblivious of the world’s challenges. Freedom. Peace. Friendship. Happiness. Lightheartedness. For just this moment, we are not the family that struggles. We are not children who are different and don’t fit in. We are not a mom who is struggling with mobility and health, trying to make ends meet. For just this moment, we are just a regular family; playing in the sunlight and enjoying life. And there is little that’s more precious than that. ^_^
Today David had his martial arts lessons down at Empower Martial Arts and he did really well there today. With a little one on one help from his teacher, he is now getting better at his kicks and other moves and between practicing there and here at home, he’s getting better at holding his black belt statue (have to try and hold still for at least a minute). I have to admit you can only get so many of those out of him though at one time before he refuses to hold it for even a few seconds. lol ;)
My favorite part about today though was he was caught showing “true black belt attitude” when a fellow class mate fell down and he dropped everything to run over to help. That’s my David right there. ^_^ He may be behind on a lot of things, his coordination may still need a lot of work, he may struggle to hold friendships and get all the social cues right, and there may be no denying that he needs help focusing better, but he definitely has a heart of gold and cares about those around him deeply. And he definitely makes this momma proud. ^_^
No surgery today. I am still wheelchair bound for the most part and am not supposed to attempt more than a few steps of walking at any given time (the few times I have, I struggle to breath right for up to an hour because it messes up my autonomic nervous system and I tend to have to load up on pain pills afterwards as well) so I had to set up a ride through my insurance so that I could take my chair with me to the hospital for the surgery. One of the reasons they are required to provide the rides for me is because they are still trying to refuse to cover the braces I need to walk again and also refuse to cover the equipment I need for my car in order to take my chair with me.
They didn’t show this morning though and when I called to see where they were and what was going on, they refused to fix it or send someone out. When I got a hold of the admissions desk at the hospital, and then Dr. Healy and his nurse, I had to agree to reschedule because there wasn’t any way for me to get there with the insurance transportation refusing to do their job. Thankfully, Healy and his team were very gracious and kind to me considering the situation. The one who is suffering the most with all this though? Joshua. :( He’s most likely up for another month long wait again and his teeth seriously need fixing. This could mean more losses vs saves not to mention the continued pain he has to be in while he waits.
Government run health care is not all that some may try to claim it to be. I would give just about anything to have the means to be on private insurance right now… At least then I would stand a fighting chance.
Getting ready for tomorrow at the hospital. Joshua is having surgery there to try and repair some damage that his Ehlers-Danlos has caused to his teeth and to save what can be saved. For the ones that are too far lost already, they will be pulling them and trying to build spacers in their place to hold the spot long enough for his big teeth to come in. Prayers appreciated as this will be a big adjustment for the little guy. EDS is definitely taking it out on him harder than it did me at his age.
David will be with me tomorrow too and has been struggling more than usual this last week with being connected, focused, and calm so prayers for him are greatly appreciated too. Especially when it comes time for mommy to leave the room to be with Joshua and David has to stay with a friend.
I will do my best to post updates for you all after this is all over. Thanks everyone. : )
This one proved to be difficult but it finally came out. :) Had me (and the dentist) worried towards the end because it was getting wedged in a bad position even though it was incredibly loose, but thanks to Joshua’s clumsiness or temper (still not sure which… lol) David got a good bump to the mouth and out it came. Whatever it takes I guess? lol