An Autism Diary

A day in the life of David Hartley

We have a new team member :)

David met a new doctor yesterday. His first GI doctor to be exact. The guy was great and so was the student he brought in that was shadowing him for the day. He came into the room already aware of David’s Autism and prepared for creatively handling the behaviors that are most common with David in a doctor’s office. That was nice to see happen and I can’t help but think Jordan (our primary care doc) had a lot to do with that.:) ¬† His student was even great with David and went along with the flow with great ease and skill. Even though David kept changing things up. lol

Best part though is we now have a plan in place to start trying to help David with his GI system. And it doesn’t involve meds as the doctor thankfully understood the barriers that have been making getting meds down David practically impossible (even hospital grade nurses couldn’t get meds in this kid and they tried every trick in the book). Glad to have this guy on our team.:)

Not So Restful Rest

Thankful for rest. Thankful for kids to cuddle with. Even thankful said kids turned most of my nap into a tackle and play session. lol Life can be full of fun if you let it. Even if the moments come when you would rather be doing something else.ūüėČ

Boxes and Kids

The boys are finally discovering the joy and fun of an empty box!
 
Joshua turned his into a rocket ship and enjoyed an adventure out in space.
 
David? Well… he climbed in and enjoyed trying to roll over with the box. Giggling every time he caused it to tip and he came tumbling out. haha
 
Such huge differences with these two lol, but one thing that was the same was their huge smiles and contagious laughter. ^_^

A Child’s Surprise

My two sons’ surprises came in today! A beautiful bouquet of flowers with a feel of “wildflower picking” to them. ^_^ The florist did a great job creating an arrangement that looks like a young boy would put together if given the chance. Joshua was very pleased. ^_^ Joshua also had them add a balloon to the order.:)

Joshua's Mother's Day gift

From David came a beautiful new Ariel doll to add to my collection. The surprise behind all the mentions of “Ariel cookies” over the last few days. lol He was trying so hard to keep the secret and was flap happy about getting to surprise me with a gift. ^_^

David's Mother's Day gift

What precious boys I have. I am so truly blessed. Aside from the presents, I feel I have been gifted with the sweetest little boys ever.‚̧ My heart swells with happy tears when I think of how much thought they put into their gifts and how excited they were these last few days at the idea of surprising me with them.‚̧

The boys decided to be silly for their picture this time lol  They sure do make life fun ^_^

The boys decided to be silly for their picture this time lol They sure do make life fun ^_^

 

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Mother’s Day 2016

Mother’s Day 2016
 
No breakfast in bed or cards to display
Just two sleepy heads and a “mommy I want to play”.
No special “I love you” or “Happy Mother’s Day” wishes
Just two little boys who still haven’t put up their dishes.
 
Powdered sugar everywhere
from a special breakfast I planned myself.
A stolen hug from my cuddle bears
while once again pulling them off the shelf.
 
Mother’s Day in our house is just another day
No big celebrations, or even recognition of the holiday.
I use echolalia to get a special wish from my sons.
I may never get one unprompted, but I still feel like I won.
 
You see, my kids may not understand
All the hype and the noise
But they love me all the same
And they’ll always be my special boys.
 
And thanks to some friends
and a Mom who understands
I still get remembered
and special gifts still get planned.
 
This year my mom worked with my boys
to surprise me with gifts that has them flapping with joy.
They may need help remembering why,
But seeing them so excited, brings a happy tear to my eye.
 
Mother’s Day 2016 is a day just like the last.
Just like most other Mother’s Days in the past.
Tomorrow is when the fun begins
As that’s when grandma’s packages from the boys come in. ^_^
 
All in all, my holidays may look different
than the ones celebrated by others
But I still find joy in the precious boys
who made me into a mother.‚̧
 
 
‚̧ Happy Mother’s Day to all the mom’s out there!‚̧
 
 
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The Sky is No Longer the Limit

IMG_1681 -taggedSomething positive for the day:

My sons got to go for a ride on a real plane today.:) We stood in line for two hours for the chance which definitely wasn’t in the plans, but considering how huge a fan Joshua is of Dusty and planes in general, getting out of line was out of the question. lol It was worth it though as my boys truly enjoyed the experience and it’s not something I would have had the means to provide for them on my own. To help the line time go by, there was a magician there too that would come through and show different magic tricks and even had a dove that he let the children pet. Joshua got to hold it at one point too.:)

IMG_1672 -taggedSomething to be thankful for today:

I had checked ahead to make sure there would be a way for me to ride with the boys because I knew they couldn’t go up on their own. By the time we finally made it to the front of the line though, the extended standing on a bad ankle and with unreliable knees took it’s toll and I was unable to climb into the plane the boys were put into. I begged the pilot and the volunteer that was helping organize the rides to not take the boys off and for a chance to see if there was a teenager or adult who would be willing to take my place to keep an eye on the boys so they could still ride. When the situation was presented to the people that were still lined up inside the hangar, a father volunteered to take my place so the boys wouldn’t be forced to get off. ¬†A true gift from God in my opinion.

IMG_1655 -taggedThe pictures from the plane ride¬†are courtesy of my son Joshua. ¬†He’s getting quite good with my camera.:) ¬†As for the plane ride itself, this proves what I knew all along. ¬†The sky may very well be the limit for some, but my boys were destined to rise above. ^_^

This was all made possible because of a local charity that works with at risk youth.  They put together this event to help raise awareness of their organization and to raise funds for their next project with the kids they help, building a plane!  You can learn more about them hear.  Go check them out.:)

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The pilot with the boys shouting, “We got to fly!” ^_^

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This is the magician that helped entertain the kids.  He had a fun variety of tricks to show them and was a definite hit.:)

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Here he is making Joshua’s dollar bill levitate! ¬†Still can’t figure out how he did this one. lol ¬†Joshua let the magician borrow his brand new, crisp dollar bill and almost started to cry when it was promptly wadded into a ball. ¬†Then the magician let go and the bill stayed in the air! ¬†Joshua got over the tears fast when he saw that and now treasures his wrinkly bill as it was the one that “was made to fly”.:)

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This is the magician’s pet dove that he let the kids pet. ¬†Joshua even got to hold the pretty bird at one point.:)

This has definitely been a day filled with memories that will last a lifetime.‚̧

 

 

 

 

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.

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