An Autism Diary

A day in the life of David Hartley

It Still Stings…

Why do kids seem to repeatedly think it’s okay to make “friends” with a child with special needs when they have no intent on truly being a friend in the first place?  Why do so many think it’s okay to take advantage of a child with delays and social struggles to get what they want?  Do they honestly think these kids don’t have feelings?  That they are not as important or as deserving of respect as a “normal” kid so to speak?  Do they honestly think their cruel actions are okay simply because the victim doesn’t fully understand what’s being done to them?

Well, no matter what they think I am here to get something straight with past and future fake “friends” who have their eyes on my boys.

My boys are not pawns to be played with and manipulated as someone else sees fit.  They are not toys to be gotten out and then ditched as soon as another, cooler, newer, toy is found.  They have feelings and are just as human as the rest of us and as such deserve to be treated with basic respect and common decency just as much as the rest of us.  They are not here to entertain you, or to fill your time while you wait for something better to come along.  They are not here to provide you with a source of free food and toys via their personal belongings and snacks.

If you want to become a friend to my boys, that’s great!  They make awesome friends with a loyalty and dedication that’s rarely seen in kids their age these days.  They would never knowingly hurt you and they will be the first to stick up for you if they think someone else is hurting you.  They’ll be your biggest cheering section whenever you need one and will never judge you even when others try to encourage it.

However, if your only intent in “befriending” my boys though is so that you can have someone to laugh at, manipulate, take advantage of, or use as a “stand by”, you’re NOT welcome in my home.  Please just keep moving on and leave my boys to make friends with others who truly can and will see their value.  They deserve no less and I won’t let them settle.

#ColorTheWorld

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!

Photo/artwork credit goes to A Legion for Liam.  General permission for use was given on their page.

Photo/artwork credit goes to A Legion for Liam. General permission for use was given on their page.

A big thank-you to A Legion for Liam for this graphic and the generosity of letting it be shared and spread on other pages.

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David won!

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!
me: winning…
David: Winning!

lol That’s my David. ^_^

David's Final Design_tagged.

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The Big Reveal!

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. ^_^

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What a Change! :D

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 ;)

Brotherly “Love” lol ;)

DSCF2829_taggedDavid lost another tooth the other day (forgot to post it lol). It was thanks to his brother Joshua again too. >< *sigh* What am I going to do with these two?? 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. : )

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The Art of a Zebra

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

David's Final Design_taggedToday 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 Final Design_taggedJoshua’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).

Cindi's Final Design_tagged

Quite the Adventure

Joshua after the surgery

Joshua after the surgery

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

Update On Zebra Status

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.

The Zebra Life Begins…

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.

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