An Autism Diary

A day in the life of David Hartley

Outsiders

This post was originally shared on my sister blog, The Zebra Chronicles, over at Stripes and Puzzle Pieces.  I am sharing it here as well because I feel that some messages are worth sharing twice.  Especially considering the wide differences in my reader base for each blog.  I promise not to double share often, but this time, I felt a need to share this message with both the Autism side as well as the Ehlers-Danlos side.  Don’t be afraid to be an “outsider”. <3

~~~Previously posted on Stripes and Puzzle Pieces~~~

“I’m failing at being you
But I’m winning at being me
I’m winning at being free
Ain’t no competition but me”

“And I found out that I’m not alone
And there’s plenty people like me
I said there’s plenty people like me
All outsiders like me
All unashamed and all unafraid
To live out what they supposed to be”

These are a sample of lyrics from the song “Outsiders” by Lecrae. While listening to this, I couldn’t help but think of David and me. We both have been outcasted in so many ways and by so many, but we are both committed to still being real and true to who we are no matter what. Is it hard? Definitely. Does it hurt? Yes it can. Is it lonely? Sometimes. But the alternative, forsaking who we are and trying to force ourselves into a pre-approved boxed idea of how we should be, just isn’t an option.

Stay true to who you are! Be proud of what makes you different, don’t be ashamed of it. Stand strong and know that you are not alone and that you don’t need to fall for the lie that one has to fit in to be worth something. <3

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The Intricacies of Communication

While watching a Sesame Street video last night, the boys demonstrated once again how much more they are able to open up, and even communicate, when talking to their special “friends” (aka the characters from various shows and movies they love to watch) than when attempting to engage in the world with other people.  This is especially the case with David although over the last couple of years, we’ve been finding more and more ways to use the various characters, lines, movies, and even exact scenes, to reach into David’s mind and help pull him out and use that vast collection of memorized lines to communicate.  As a result, David’s speech and communication has grown and though he still heavily depends on various combinations of memorized lines, scenes, and even character personalities and actions, he is slowly growing in his ability to communicate with his own words and emotions.

As a result of this, time and time again, from those who have just met David, or have known him only in brief moments here and there, I hear the familiar comments about how he doesn’t seem like he has Autism, he talks too well to be severe, and am I really sure that he struggles as much as has been said?  Aside from the reminders of the team of doctors and specialists from whom came the diagnoses and information, the answers to these, when I am up to dealing with the conversation that tends to follow, always leads to the extent of pointing out to them David’s intense memorization skills and the way he seemingly instinctively focuses them on studying, learning, and memorizing the world around him as he feels connected to it.  This often means the bulk of what he takes in is from listening to mommy have a conversation with someone, trailing behind a fellow kid until said kid gets tired of him being there, or from watching one of his favorite shows for the umpteenth time; centering in on a scene that connects with how he is feeling at the moment or that captures his specific interest for one reason or another.

In turn, when he believes he hears one of his well memorized lines or scripts being said or “acted” out, he will respond to it.  Sometimes with direct quotes, often with a mixture of quotes, and sometimes with a learned or “trained” response that he’s practiced before with me or others (the latter is how most of our videos are made with him when I am trying to get him to “talk to” his DogForDavid fans and friends).  Occasionally he will bless the listeners around him with some original speech, completely his own.  I have to admit that can be a delight to hear for me when it happens. : )  No matter which method he chooses to use though to respond (if he responds at all in the first place), it isn’t always guaranteed that he truly understands the meaning of the words he’s saying and/or the body language or other actions he decides to throw in along with them.  This has led to many a humorous situation as well as many an embarrassing one to be quite honest.  The latter especially when he says the wrong thing at the wrong time without realizing it around someone who has no idea what is going on.  I’m still learning and collecting “how to smooth things over again” skills to help in those moments. ;)

While having a conversation with my mother-in-law last night about David, she was telling me how she had picked up on the movies and scripts and how David uses those to connect and communicate.  She then reminded me of a story I first read about a couple of years ago, about a young boy who fixated on Disney movies and whose family found a way to use that to break into his world too and open the lines of once closed communication.  Once they started seeing success, they too started hearing the comments about how patients with Autism as severe as his weren’t supposed to be able to do what he was accomplishing with the help of his Disney movies connection.  My response?  Pretty much the same as the dad’s from the story.  The potential and ability was always there.  It is for every child.  The trick is figuring out the way in and a way for them to let it out.

I thank God often for blessing David and me with that precious key and connection.  I know all too well that it isn’t so easily found and used.  I also thank him that David found a voice.  Even if it is still pretty much 80% scripts and echoes, it’s still verbal communication.  I still get to hear his precious voice that had once fallen so painfully silent for so long.  I understand deeply what a blessing that is as well, as his communication breakthrough could have easily stopped at body language or sign language like it does for so many.  No matter how precious this all is though, it doesn’t take away the very real facts behind his diagnosis of severe Autism.

David has a lot of challenges, delays, and barriers in his life and path; some of which will undoubtedly be with him through out his life.  Even his communication is still considered delayed and marred with difficulty and uncertainty because he still too often demonstrates that he doesn’t completely understand over half of what he says and/or that he can’t understand what’s being said to him.  Like for instance, when you see him fall and clearly hurt his arm, and you ask him if he’s ok.  Sometimes he will say “yes” and then quote through his tears a line from a recently watched character who got hurt, rarely getting the right location in the process even though he can point to the hurt arm.  Other times, he will say “no”, but when you ask him where it hurts it becomes a 50/50 chance of him actually answering you vs him lapsing into some random quotation from a familiar and comforting script (usually something from Thomas or a line or two from a Disney song) as he wipes back his tears.

One thing though has always been, and always will be, completely clear and sure in David’s life.  How much his precious little self is loved and cherished by his mother.  He has had my heart from the day I first saw his tiny heartbeat register on the sonogram screen, and he will always have all the love, help, and support I have within me to give.

New Laptop

And I’m back!  At least sort of… lol   Anyone miss me by any chance? haha

The boys had broken my power cord to my laptop and the battery died before I could get a new one ordered.  Around town, the price for a new one is $40!  I wasn’t about to pay that considering I don’t really have that to spend on nothing but a cord, so since I’ve been needing and wanting a lighter/smaller computer for quite some time, I found a little shop through a referral from a trusted friend in the comp repair world that was able to sell me a new one within my budget that met my needs better.

Good news, this means I have a working computer again (the other one had a few bugs in it too from being dropped).  Bad news is, my home wifi password is on the old computer… haha  Saving a screen shot of it on my desktop seemed like a great idea until I could no longer turn the computer on to see it. lol  I am currently at a wifi hot spot letting the new comp charge and checking in on messages.  Until I figure out how to get my old one back up and running, or find a different way to get my wifi password, I might have to depend on hotspots for internet.

In the mean time though, I’ve been getting a lot of reading in with the comp being down for the count.  And the boys have been entertaining themselves with the Roku in between the school work I was still able to access for them to do.  My foot is doing better, but I still can’t walk and it still has issues with swelling and possible nerve damage again.  We’re working on all that though.

I will try to sign in again with more news soon.  In the mean time, how have all of you been?  Please leave a comment or two for me below. :)

Quick Update

We have had quite the adventures in the last two days. Friday, we went on some field trips with some help from my neighbor that had us all over Wichita and even included a stop at my favorite little spot in Maize, MOXI Junction. While there we saw the DogForDavid artwork up so I encourage all our local fans to stop on in and check it out while you enjoy MOXI’s amazing bakery skills and great drink varieties. ^_^ We wrapped up our day hanging out at home with our neighbor sharing jokes and stories. :)

We also had fun last night with our neighbor learning Sign Language together.  The boys and I brushed up on our skills and our neighbor learned some new ones. ^_^ Also, I got to attend the first local Ehlers-Danlos support meeting Saturday afternoon and met a handful of nice ladies and some great kids. I got to learn a lot and met others like me and Joshua. Looking forward to the next get together. : )

What will this next week hold? Outside of the boys’ school work, I am not sure yet, but things are definitely looking up as I am slowly getting more stable. I still can’t walk, but I am getting better with my wheel chair and am not having near the problems with my Autonomic Nervous System as I was shortly after surgery. That’s a big plus for me. ^_^  It felt great to start getting out again like this too.  Being cooped up so much was seriously doing a number on me which I wrote about over at Stripes and Puzzle Pieces.  So glad to be finding my footing again.  No matter how long my recovery takes physically, it always feels great to be getting back to being me. ^_^

Showing Love

DSCF0338-editedOh boy, where to begin. lol  I have definitely been having a hard time with keeping up with DogForDavid lately.  The boys and I have been doing a lot though and have been working together to find ways around my inability to walk or take them on drives.  Sometimes it goes really well, sometimes it goes really bad, but most of the time it ends up somewhere in the middle of those two extremes. lol

One of the biggest things though in the last week or two is that we’ve been trying hard to find a way to get better at school work with my new limitations.  I am happy to say I finally worked out a new system and the boys are adjusting well to it so far. :)  There is not as many lessons out in the community or while walking around or playing outside as their used to be due to me being chair bound for now, but I have found some websites, some fun worksheets, and some games to add to the videos we already had and some things I came up with on my own for them to help keep them interested and still make their learning as hands on and relevant as possible.  One of my favorite finds though I must admit is a site called Leadership For Kids.  It has several videos and different sets of lesson plans to help the boys with their Bible study as well as with learning about and practicing some basic character traits that I want them to have.  Things like being loving, helpful, kind, creative, etc.

DSCF0336-editedEach video comes with a lesson guide that includes a small quiz about the video’s lesson and Bible story, the memory verse for the week, and a project to do with the family.  Today’s lesson was “God made me to love” and the project was to come up with an idea of how to show love to others in our community.  I had to get creative with this one because our usual projects involve needing me to be more mobile so we had to come up with something new.  I am happy to say the boys helped me come up with the idea of making cards for other people and families who are currently shut-ins like us whether it be due to age, disability, being sick, or whatever the case may be.  I added some writing practice to the project by modeling a phrase I wanted them to put on each card before they decorated it.  They were having trouble with some of the lower case letters though so I ended up also making dashed line letters for them to trace.

The boys were very excited when they heard I had found someone willing to come pick up the cards this Friday and get them to the church for us to be handed out.  I am really proud of my boys for wanting to do a project like this.  They are definitely learning more about what it means to be loving and to show love to others more and more every day. ^_^

What We’ve Been Up To

I have collected a few pictures recently that represent some of the things the boys have been keeping themselves busy with while Mommy is chair bound due to the surgery.  Schooling has temporarily become heavily worksheet and video based until I am back on my feet and able to do more hands on projects with them again (or until we get a new sitter/assistant that would be willing to help with that part).  Because of this, I have been letting the boys branch out a bit more often into free time to do as they please so they don’t overload and get too cranky to work with.  I am happy to announce most of their free time activities they have chosen has been to watch more episodes of their favorite educational shows, drawing and other art, writing practice, and self-led math practice!  The latter though is admittedly Joshua, as David still isn’t convinced math is a good thing. lol

They have plenty of play time too where they practice using their imaginations to create new stories.  Mommy sometimes has a direct hand in that one… usually when I am tired of hearing the same cartoon script played out for the umpteenth time. ;)  Right now for instance, as I am typing this up, they are setting up a “store” for their toys to play in.  They held a “story time” session earlier which is admittedly a tried and true script based play for them but at least they have fun while doing it. : )

Before I go rambling on further, here is the collection of pictures from the boys. :)  Enjoy! ^_^

David has definitely been doing a lot of art lately which makes me smile big. :)  Especially when he creates in his notebook because then I get to keep it.  I told him the plan is as soon as he fills every page, we will keep it on the book shelf and I will get him a new notebook. : )

David has definitely been doing a lot of art lately which makes me smile big. :) Especially when he creates in his notebook because then I get to keep it. I told him the plan is as soon as he fills every page, we will keep it on the book shelf and I will get him a new notebook. : )

This is David's new doodle board.  He loves to draw on this and he also prefers practicing his letters, numbers, and math on here as well.  I can't keep the things he does on this though so I usually try to sneak a picture in here and there to document his progress.  ; )

This is David’s new doodle board. He loves to draw on this and he also prefers practicing his letters, numbers, and math on here as well. I can’t keep the things he does on this though so I usually try to sneak a picture in here and there to document his progress. ; )

Here is Joshua with the new doodle board.  This picture is from his free time believe it or not.  That boy loves his math now that we have discovered the touch point method. :)  He's getting fast at it too and enjoys making up his own problems when math time with mommy is over for the day.   He is still working on mastering subtraction, but his addition skills include numbers beyond the hundred thousands place value with what we like to refer to as "column power" and "jump overs" :)

Here is Joshua with the new doodle board. This picture is from his free time believe it or not. That boy loves his math now that we have discovered the touch point method. :) He’s getting fast at it too and enjoys making up his own problems when math time with mommy is over for the day. He is still working on mastering subtraction, but his addition skills include numbers beyond the hundred thousands place value with what we like to refer to as “column power” and “jump overs” :)

The boys have also been doing a lot of lego building ever since Mark showed them some new tricks.  Featured here are two of David's latest creations, his plane and car. : )

The boys have also been doing a lot of lego building ever since Mark showed them some new tricks. Featured here are two of David’s latest creations, his plane and car. : )

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The white works Mommy!

David's car with white wheelsFor the longest time, my precious little guy would get out all his crayons, and the white computer paper I would give him for drawing and coloring, and set to work creating ’till his heart was content.  It was always just a matter of time before I heard the phrase, “Mommy, the white won’t work! :( ”  or  “The white is broken Mommy!”.  He just couldn’t understand that the only reason he couldn’t see it was because he was coloring white on white.  No matter how many ways or times I tried to explain it.

Today though, he had out his new notebook that he now colors in.  He’s been creating entire scenes for me lately and I love it. ^_^  This scene turned out to be our car driving down the road.  When he went to make the wheels, he decided that he would give white one more try.  Next thing I know, I have a very happy and very excited David running up to me shouting, “It works! It works!  Mommy it really works!”  

When he saw the white start to cover up those typical blue lines of the notebook paper he behaved as if he was an explorer who just stumbled upon the find of the century.  And for him, it probably was.  At least until he discovers the next wonder. ;)

Autism and Change

As I have shown with my recent posts over on Stripes and Autism, life has been changed pretty drastically around here.  With me being down for the count and unable to do anything about it without someone’s assistance, it has changed what I can and can’t do with and for my boys.  It also has caused a major change of structure and stableness and a loss of familiarity that David specifically has been butting back at for understandable reasons.  Just a couple days after Mark (our new sitter/assistant) left for college, as we were coming down off yet another meltdown and an aggressive explosion of anger, I sat with David in my arms and asked him what was wrong?  I wanted to know if he could voice for himself what was causing him to be so upset and so unstable behaviorally and I thought I was prepared for the answer.

I figured he wouldn’t be able to articulate anything exactly and pinpoint all the root causes, but I still assumed he would be able to say something to the effect of things being different or him feeling different or something.  In a way he did express these things, but he did so with words I wasn’t expecting to hear.  With the tears still on his cheek from the recent crying and the memories of the chill out session I had to help him do (I brace him until he can calm down to keep him from continuing to hurt me or himself), he said simply, “I’m mad at you Mommy!”.

At first I figured he was just still stuck on having to be braced or that he was still upset for having some of his trains taken away due to getting violent again and so therefore didn’t hear or understand my question, so I asked him again.  To my surprise he said the same thing but with a slight addition that clarified he did understand me afterall…

“I’m mad at you Mommy because you can’t move anymore!  I miss playing with you.”

My heart broke into what felt like a million pieces at those words.  I was flooded with a range of emotions from being angry that my body had to fail me to the point that we got into this mess to wanting to cry for how badly it was effecting my kids and everything in between.  I did my best to talk David through how this was just temporary and that it was hard on us all.  I tried reminding him of things I could still do as well, and about some of the cool new things he has as a result of the situation too like the Roku from Grandma for instance.  I wasn’t sure how much he understood, but I am used to that as he isn’t always able to communicate well enough for conversations that break away from his tried and true scripts.

Over the last few days though he has definitely been coming around more and has started finding pride in his ability to help mommy in new ways.  Things like helping bring me water or working with his brother to hold the walker still so I can use it to pull up and transfer myself to the wheelchair and back when needed, etc.  His favorite though I think is getting to answer the door for me, although he is still working on doing that one correctly. lol  I am right here on the couch so I can help with coaching him through and telling the people to come on in, but I happen to be just out of reach of the door knob so I can’t actually open and shut it myself.  (Joshua’s new roll with the door is climbing up and chaining it shut and sounding an alarm for me (he’s a LOUD whiner/screamer when he thinks David is taking over his territory ;) ) any time David starts to climb up after it as well.

Through it all, things are still no where near the same that we’re used to, but we have regained our ability to work as a team and are making the best of it.  Kind of reminds me of that saying by the three musketeers… “All for one and one for all…” ;)  Proud of my little guy. : )

Stripes and Puzzle Pieces

Stripes and Puzzle Pieces WordPress Banner

The day is finally here.  We are officially launching the new and updated DogForDavid!  This blog, “An Autism Diary”, will still be mainly focused on Autism and David with a touch of me and Joshua here and there and a few fundraiser posts like it has always been, but I will be trying to be more open with my faith as well as it is my faith in Christ and the strength and comfort He gives me that keeps me going and that keeps all this from falling apart.

Our main page has been changed the most, but mostly in design and layout.  We also took away some of the features that were not working very well and/or weren’t as easy for me to maintain and added a new feature I hope you all will like.  A FAQs page filled with the questions I tend to hear most when at an event or talking to DogForDavid readers and fans. :)

DogForDavid has grown from being just a video, a kid, and fundraising goal to being all that and more including a YouTube channel, an official website, a facebook page, and a sister blog that was once known as, “Beyond the Autism”.  The sister site was meant to be a place for me to branch out and write more about me and my interests and hobbies and other random things that crossed my mind.  It’s use was short lived though for a few reasons but has now been both revamped and revived to be an important part of the DogForDavid team of sites.

Same address, but now with a new name, “Stripes and Puzzle Pieces” will be the blog that ties in most of DogForDavid’s updated outreach with EDS, faith, and other topics.  I will also still use it to branch out in general at times like it was originally created for.  To learn more, please check out the post “The Zebra Chronicles” on the front page, and consider following the blog to make sure you don’t miss any DogForDavid updates, whether from “An Autism Diary” or “Stripes and Puzzle Pieces”. :)

Wait is almost over! :)

Thank-you everyone for being so patient with me. Some big updates are coming soon to DogForDavid, including an updated and revised sister blog, a new website design, some new artwork, and a broader subject reach. The DogForDavid you all have grown to enjoy and follow will still be here in every way, we are just adding a bit more. :)

With me knowing now that both of my boys have EDS just like me, we will be adding that condition to our awareness and support efforts side by side with the Autism awareness and support we already do. I also will be trying to be more open with my faith because in all honesty, it’s my faith in Christ that helps me get through it all and keeps me standing. I also use my sense of humor to help me laugh away the stress as much as possible. This chaotic life we’ve been dealt with all three of us being physically disabled to one extent or the other and the two boys having the severe sensory and cognitive delays due to the Autism on top of it, and having to handle all this as a single mom, would crush me without those two pieces of my life to fall back on. Not to mention the now added issue of being bed/chair bound from the surgery. ;)

The meds I am on for pain and the issues with my foot and the boys right now are making things a little more unpredictable than usual, but the plan is to launch the new updates tomorrow by sharing a post I have been saving/storing on the sister blog. It was going to be today but the meds knocked me out more than I meant them too and I was groggy all day because of it. lol

So keep an eye out for us tomorrow and I hope you all enjoy the new updates and the new adventure. :) For now, go ahead and check out our mother site: www.DogForDavid.com to see the updates there and please feel free to leave us some feedback. We value getting to hear from our readers. :)

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