April is known as Autism awareness month and tomorrow (April 2nd) is World Autism Awareness Day. Instead of the typical and well known blue light bulb though, I ask that any and all who are willing, light it up colorful to help spread awareness. Whether you have personal reasons to do so, or you’re doing it for David, I thank you in advance. <3 Don’t have a multi-colored light bulb? No worries, that’s not the only way to add some color to the world this month. I for one wear colorful hair decorations, and this year, since I have to wear a brace that takes up half of my left leg anyway, I will be adding colorful ribbons to it. I have also seen people do their nails or simply wear t-shirts about Autism or bright colored clothing. The possibilities are only as endless as your imagination. :)
The reason for all the colors? Autism is a spectrum for one, and also the bright colors in our awareness ribbon were put there to represent our hope. Lets remind the world that we’re not “blue”, we’re beautiful!
DAVID WON! Thanks for all the support and help. :D My oldest son won the kids category in the t-shirt contest. ^_^
The conversation with David went like this:
me: David! You won! Come look!
David: I won? I won??! I WON!!! I love wonning!
lol That’s my David. ^_^
Grandma saw it so now you get to as well! It’s quite the change, but he looks good. :) Right after the haircut, when he first saw himself in the mirror, he started saying he wanted his hair back and kept asking me to put it back on. He’s good with it now though and has actually started to like his new hair. ^_^
DAVID LET ME CUT HIS HAIR!!! Oh my gosh! After talking about it for a few days (he started the talk) and him going back and forth a bit as I helped him consider all sides, he brought me the scissors and asked for a hair cut! This is HUGE! Even bigger news though is afterwards, when I put him in the bath, he actually said “now it’s time to dump water on my hair” (aka get his hair washed). He HATES getting his hair wet, let alone washed! It has always been one of our biggest battles!
With me singing to him to help him stay calm and him practicing his breathing and the focus he’s been learning in his martial arts class at Empower Martial Arts he actually made it through the entire process (hair cut and complete hair scrub down/wash) without screaming, having a meltdown, or thrashing around in a panic! We haven’t had this level of success in this area in over 6 years!!
His hair has always been a big thing with him and I’ve chosen to let him decide how he wears it and have done my best to work with him when it came time to clean it and keep it brushed, etc. It’s always been a source of fighting and meltdowns though to an extent because there is only so much I can do before it’s time to just force him to get it clean and force him to hold still long enough to give it a good brushing through.
I am so proud of David for being so brave and for making such huge progress in self-control and self-calming. ^_^ I will post pictures soon. First though, I promised David I would let him Skype Grandma so he could see her first reaction. So Grandma! You hear that? Get on Skype! lol ;)
We were at Dillon’s when it happened so the late night cashier got quite the shock when we came up to the front for help. She was really kind about it though. : ) And now David has the cutest lisp to his talk. lol Reminds me of when he was still just my little guy. ^_^ He’s growing up so fast! They both are. : )
Today was a bit hectic because both boys were struggling to stay focused. Yep, Joshua is feeling better so take David’s antics and struggles from yesterday and times it by two. Two little boys that is. ;) Oh well. lol We still made it through the day at least and are back home now. I am attempting to get these too attention impaired kids to clean up at the moment while I try to get some work done. Let’s just say I am reminding them to get back on task an average of every 2 minutes. >< Oh to have their energy level myself again. Or to find a way to help them channel theirs so they could be more productive when needed. lol
Today is also the day I was able to get all the forms and final touches done on a contest the boys were wanting to enter. :) They are both now officially entered into a t-shirt design contest for CEDSA (an Ehlers-Danlos Syndrome organization) and so am I. The contest will be held on CEDSA’s facebook page and will be judged by number of “likes” each photo gets. There are three categories too. The boys are both in the children’s category and I am in the adults one. The middle category is for teenagers. The picture to the right is David’s entry for the contest. David’s design includes a picture of him and a zebra wearing rainbow stripes in honor of their EDS. When I asked him about it, he said he is proud of his stripes so I used that for the phrase I had him copy to his picture. :)
Joshua’s is a zebra flower he says and is meant to add a bit of beauty to one’s life where there is normally a lot of pain. (His words, not mine ^_^ ) Mine (shown below) is the one with a zebra and the hoof beats. The saying on it is meant to reference the phrase taught repeatedly in medical school that caused zebras to start being the mascot of those with rare conditions in the first place: “When you hear hoof beats think horses, not zebras.” The idea was to train new doctors to look for the more common first, instead of jumping to the conclusion of a rare disorder or disease. The problem though is that the lesson is taught so often and focused on so much that a lot of doctors end up graduating with the problem of forgetting that medical “zebras”, although rare, do still exist and need to be watched out for.
The boys and I are all excited to have this chance to be in a contest like this and are hoping for the best. I am so glad they are trying to reach out and challenge themselves like this though so I promised them that no matter what happens with the contest, I will make them a t-shirt with their design on it for at least themselves to wear. They are pretty happy about that too. If you would like to support the boys in their first contest though, we would all greatly appreciate it. The voting starts on the 13th (this Friday!) and will continue through the 23rd of March and the contest will be held on the CEDSA facebook page (linked above).
It has definitely been a long day today, but Joshua finally had the chance to get his teeth taken care of and is doing ok so far. Have to call the dentist in the morning though because within minutes of finally getting home, one of the all important spacers fell out. :/ Outside of that though and a bit of struggle waking him up from the anesthesia (we’re talking hours…), things went as expected with few bumps in the road.
David sure gave me a run for my money though while at the hospital. He was sooo hyper today and it seemed the only things he could focus on were his brother (at all the wrong times and in painful intensity at times) and his own little world he created for himself with the play dough a nurse gave him and his imagination. He got himself into trouble a few times because he wouldn’t quit climbing, tried to run off a few times, and managed to unplug a machine…
He also had some moments where his heart for his brother shown through strongly and even though I had to physically restrain him/hold him back more than a few times, it was nice to see the tight bond the boys have formed surface again. At one point, Joshua was scared of the mist the nurses had to spray up his nose to help relax him enough to make putting him under less stressful for him. David was in a nearby room behind me playing with some toys when he heard his brother’s cries of distress and came bolting out of the room determined to “rescue” his brother at all costs. Considering David wouldn’t even acknowledge anyone’s existence before that point (and rarely did afterward), that was a pretty big moment between him and his brother.
A few minutes later, when it was time to take Joshua back and David and me to the waiting area, we couldn’t get David out of the play room or to even acknowledge us until I said they were taking Joshua, it was time to go. Once again he came running out slightly panicked, and when he saw Joshua on the bed in the hall he demanded to know what was happening. Somehow he even managed to come across cute while doing so. lol Once the nurses and I calmed him down, a nurse offered to let him “help” push Joshua’s bed with her. David always likes helping so he agreed immediately, but then tried to take off running with it. >< lol Thankfully that only lasted a brief second thanks to the nurse in front. ;)
All in all, it was an adventurous day for us to say the least and we’ve been taking it pretty slow and easy tonight since getting back home. Tomorrow we start another adventure: get mommy put back together, try to get a hold of Joshua’s dentist about the broken spacer, and keep David calm and focused enough that he will still be able to function in martial arts class at the end of the day. Wish us luck. lol
David’s PT evaluation was yesterday and thankfully we got to take him to the same PT I have been going to so they were already used to each other which helped him be more willing to cooperate. It was a bit hard at first to get him to understand what she was needing him to do and to stay focused so she started turning it into a game and found different ways to get the info she needed. It was pretty cool because she made it so fun that David barely noticed over half of the testing and evaluation.
The good news is that there are plenty of things that can be adapted to games and activities I can do at home with him to help strengthen and stabilize his elbows. Bad news is that his elbows are extremely hypermobile and bend horrifically far in a very wrong direction. On top of hyperextending when he held his arms out straight, they also bent into quite the “v” shape sideways! I tried to find a picture example of that, but couldn’t. Think of holding your arm out straight in front of you, then bending it at the elbow so that only your forearm and hand went to the side while your bicep and shoulder stayed pointing forward! It even disturbed me to see that and I have a lot of unnatural range of motion in my joints so it’s hard to shock me in that area anymore.
With the extent of how bad his elbows turned out to be, the PT had him go through the Beighton Score test to see how he ranked. I didn’t hear what number she gave him, but from what I was seeing I would guess it was pretty high. The only thing he couldn’t really do was place his hands flat on the floor without bending his knees, but even that he got pretty close to doing.
Now we wait for my insurance to approve the PT sessions so he can actually start getting some help stabilizing his elbow/arms. Let’s hope insurance comes through quicker for him than they have me.
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.