An Autism Diary

A day in the life of David Hartley

David in a Magazine

It’s here! An interview about David was turned into an article for my favorite magazine‘s April edition.:)  Click on the link below and check out the story that starts on page 20, “Rising Above: A Story of Embracing Life No Matter What” (you can click on it from the contents page to go straight to it.)  Feel free to share it and pass it around!  You can even download it so you can read it later if you want.  I also have gotten permission for the file to be taken to a print shop if any of you prefer your magazines to be hands on.:)   I know I will be printing a copy or two for our home and to share with some proud grandmas. ^_^

->-> Broken but Priceless the Magazine <-<-

On a side note, I am sad to say that the main site (www.DogForDavid.com) will be coming down in the next few days.  Our contract is up for renewal again and after much thought and deliberation, I have decided it isn’t a good use of budget anymore to keep the site up.  This is NOT the end of the Stripes and Puzzle Pieces family of sites (facebook, the blogs (1,2), and the youtube channel), just the end of the home base site for now.  I may decide to renew in the future and will let you know if I do.  Thank-you for understanding.  If anyone wants to write us, you can reach us through our facebook page, or by e-mailing us at StripesandPuzzlePieces@yahoo.com

 

Unexpected Moments

David and I had another really rough night and I sent him to the bedroom to calm down and hopefully go to sleep. He couldn’t sleep but we shared a pretty precious moment together when I went in to check on him. We talked about all that’s going on and about how he misses Kansas and Grandma, Pilar, Caitlin, (even Gizmo lol), and Taco Shop. We cuddled together and I held him while helping dry his tears and share happy memories with him.
 
The best part though? Really two things: 1) he opened up to me and shared his feelings. Not a bunch of lines from various movies and shows. Not echoing scripts from past talks, or things he’s heard from others, or any trained responses. Real honest-to-goodness conversation with David that is getting so rare these days. Sure he still used robot jargon, but it was David talking to me finally. Not Phineas, not Sir Topham Hat, not some random quote from who knows what show or past conversation. That really meant a lot to me.
 
2) I started singing to him to help him rest as he curled up under the covers and snuggled close. I sang some old favorites from when he was little and then started in on one we learned from my hymns for beginners piano book. When I started that one, he peeked out from under the blanket and started singing it with me. We then continued to harmonize with each other for 3 or 4 more songs. It was the most beautiful thing this mommy’s heart could have heard.❤

When Life is a Rollercoaster

IMG_0627-taggedSometimes life feels like a parade. It seems like everything you do is being watched or observed by others or you’re in a part of life where everything feels like a celebration as you roll out all your recent accomplishments and blessings to share.  Sometimes life feels like a desert.  You’re lonely, exhausted, spent.  You’re thirsty for a refreshing dose of relief or change.  Everything around you looks the same for miles and miles.  Sometimes it’s a battle with the mundane and sometimes the desert is drastically difficult; pushing you to your extremes in order to survive.  Sometimes life is a meadow by a calm pond or lake.  Things are going great for you and the ones you love.  Beauty surrounds you and peace overflows from within.  Nothing big and grand to share but nothing drastic to have to survive right now either.  Life is peaceful and calm.

But what about when life is like a rollercoaster?  What about when it takes you on a wild ride of climbing suspense, plummeting valleys, ecstatic highs; with hardly enough time to breath let alone rest in between each?  What about when all you know to expect is to expect the unexpected?  When things get chaotic and you find yourself simply having to hang on tight for the ride and maybe letting out a few screams here and there?

0405161956a-taggedLately, that is what it has been like for David and our family.  He is finally starting to get services but his team is just starting so there are struggles with getting him used to it all as well as getting them used to him so they can know how best to help him.  In the meantime, David has entered crisis mode as he is continuing to regress socially and his scripting and echolalia is starting to interfere more and more with true conversation.  He also is struggling with increasing impulsivity that has lead to serious troubles when out in the community as well as to increasing the episodes of his running off randomly.

IMG_1109-taggedHe still has his beautiful moments where his love of life and his passion for all around him takes him to a place only he lives in and where he is perfectly happy and at peace.  Sometimes though, in the same day he can also hit crashing, devastating, lows where life makes no sense to him and all he knows to do is fight back against it and those around him.  Sometimes getting violent in the chaos of just trying to survive what he feels as bombardments or attacks even when in reality its just those that love him, trying to keep him safe as best as they know how.  Keeping him close when he would rather run into the traffic or towards the train tracks, taking away things he keeps trying to eat that are not food and pose a choking hazard, bracing him through a sensory overload so he can’t hurt himself from all the self-injurious behavior, helping guide him through situations and trouble that his impulsivity gets him into…

So what does one do when life is a rollercoaster?  Hang on tight, scream if you must, pray like crazy, remember the ride never lasts forever, and cling to the joys found in the highs to help you make it through the lows.  Most importantly: never ride alone.  After all, what’s a rollercoaster without friends?

Autism is Not an April Disorder

So it’s that time of year again.  April.  Where most think of spring, rain, flowers, and maybe even Easter when they think of this time of year, the Autism community has something else on their mind as well.  Autism Awareness Month and of course World Autism Awareness Day, which was yesterday.

Over the last handful of years I’ve taken both pretty seriously and dived in with both feet to help intensify the awareness efforts for my son and our local Autism community.  I must admit though that this year I am not so eager to engage.  Is awareness important?  Yes, of course.  Do I still believe we all need to do our part to help others understand Autism?  Absolutely.  Do we still have a mission to help spread acceptance and compassion?  Always.  So why am I not into the big awareness month showcase this year?  Simply put, it’s because I’ve seen it be more of a fiasco or temporary source of entertainment more so than I’ve seen it work as an actual long term tool that gets us closer to the goals we’re trying to reach.

This month the general public is going to see a lot of blue, a lot of puzzle pieces, a lot of special events, and companies offering special products all in the name of “Autism awareness”.  What good does it really do though?  What lasting effect has it really had?  What happens when this month is over and the blue dies back down to normal, the special products are now “last month’s fad”,  and the special events are simply a fading memory now?  What happens when the general public goes back to their everyday lives?

The stares return.  The comments resume.  The discrimination rises again.  Kids are once more seen as “brats” or “out of control” even though just a few short days or weeks ago they were seen as “possibly struggling” or “maybe Autistic”.  The parents are cast to the side again with their “unruly kids”.  They’re left out or forgotten by friends due to their lack of flexibility and/or lack of time and ability to go to parties or even simple social outings like grabbing a cup of coffee.  The kids running off in a store, at a park, or at an event are no longer cared about by those they are passing.  The parents struggling to calm a meltdown or keep their child safe during a sensory overload are no longer supported as much as they once were while the onlookers choose instead to pass judgement on the apparent lack of parenting skills present.

This is a problem!  If awareness has been reduced to just a few flashy events, some special products, and a month on the calendar, we’ve FAILED.  Autism is year round.  24/7.  Every minute of every hour of every day of every week of every month of every year for the REST OF LIFE.  My son is important and precious and doing the best he can just as much on May 1st as he is on April 2nd or 10th or 24th.  The date on the calendar doesn’t change who he is or what he faces in life.  My son is Autistic.  Period.  He’s not April Autistic, or Special Events Autistic, or Special Products Opportunity Autistic.  He’s Autistic.  He and others like him need our support, understanding, compassion, and awareness year round.

Let’s take back Autism awareness to what it needs to be.  A year round, never ending, practical, and everyday type of effort for the benefit of those with Autism.  Let’s work together to make a real difference; one that will last.

Beautiful Not Blue

I wear bright colors for my boys to honor the hope and beauty found in them and that can be found in their Autism.  Please join me and wear something colorful today instead of just blue.  Thank-you❤

#beautifulnotblue #colortheworld #lightitupcolorful

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A Delayed Easter Treat

The boys let me take video of them so they could share something they think was special with you.:)  I hope it can add some smiles to your day and that you all had a blessed Easter holiday this last weekend. ^_^

For a bit of story behind the video, please go check it out on Youtube and read the description. :)  To check out the blog that inspired our use of these eggs, go visit Motherhood On a Dime.

Happy Easter everyone!  God bless you! ^_^

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Love at First Swing

David and I met a sensory swing yesterday courtesy of Joshua’s PT when David was having an overload moment. (Forgive the pics, had to use my cell phone.) We fell in love with it instantly.❤

Best part? The PT said this is something we could actually get for David at home with the special needs budget program she’s trying to help connect us with! This thing calmed David down WITHIN SECONDS of him crawling inside. He was so happy and content in there! I could even see something like this getting him to sleep at night! Wow. Now there’s a concept. lol David? SLEEPING??? lol Seriously though, it was that calming and comforting for him.😀 And this coming from the kid that hates weighted vests and blankets and all that. He has always liked squeezing into small places though…

David's sensory miracle swing.jpg

Mommy & Son Night

The boys and I got to go to our first official Mommy & Son event tonight.:) There were games, pizza, kids, scooter races, legos, and a movie. Half way into taking pictures, I found out I forgot to put the memory card back in the camera though. lol We did however find a fun photo booth and came out with a small strip of fun pictures to remember the night by. ^_^

Rec Center Fun Night Photo Booth - 1 taggedRec Center Fun Night Photo Booth - 2 taggedRec Center Fun Night Photo Booth - 3 taggedRec Center Fun Night Photo Booth - 4 tagged

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Struggles and Celebration

It has been one crazy week over here in the Stripes and Puzzle Pieces household. We secured new services for David (half way to meeting his services needs now:) ), avoided two horrible drivers (one tried to back over Joshua in a parking lot even with me screaming to get her attention and jumping in front of my son to protect him, and the other ran a stop sign and almost hit David’s side of the car), and navigated another emergency room when I dislocated my shoulder again and it got stuck that way. The shoulder incident ended up with an x-ray that showed new rips and tears in my labrum and surrounding tissues, so I left the ER in a sling. Yeah… lol
 
IMG_0690-taggedTo celebrate surviving the week, I decided to take the boys and I out to Denny’s on the way home from an out of town appointment. Our waitress was great with the boys and they had a great time. David worked really hard on listening and staying calm too. A BIG accomplishment for him lately. Another diner even decided to join in on the “we survived the week” celebration and gave both of the boys a Susan B. Anthony dollar coin! They thought that was the coolest thing ever. ^_^
 
This weekend, we get to go back to the Courageous Kids Climbing event that introduced David to rock walls! He’s pretty excited about that.😀 On Monday, Joshua gets to try on his new orthotics for the first time that were made to stabilize his feet and ankles. Here’s hoping for a smoother week ahead and for surviving the one that’s thankfully behind us now.😉

A Peak at the Light

The boys and I had our first meeting with the developmental counselor. I am tired from a long day and early morning but I just wanted to let everyone know God is definitely moving. It turned out to be a real blessing today and I have hope that it will continue to be. We meet the OT next week and the counselor is also going to try and get us connected to an HI worker (think trained respite worker with ability to help boys with their struggles in the community).
 
Every Friday is basically going to wear me out now for a while as the OT and counselor are at the same place so booked back to back for both boys… but it will definitely be worth it if we truly start getting the help that my family has so desperately needed for so terribly long.
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