Tag Archive | Autism

Birthday With a Side of Autism

Yesterday I turned 35.  The day mostly went by as just another day with just a few tweaks here and there as I attempted to make it something special.  My boys were confused and largely oblivious to what day it was even though they had others who were helping them prepare for it for over a week.  They were also struggling with disconnect and excessive pent up energy from us having been snowed in for the last few days.  I have to admit, the way they finally figured out it was my birthday was because I had a meltdown of my own about their behavior and shouted out “and even on my birthday!”.  Not my proudest moment by any means, but a real one.

In a last ditch effort to salvage what was left of the day, I sent the boys off to play by themselves so I could cool down and started making myself my favorite dinner.  That’s when my mom called.  She helped me vent my frustrations as well as helped me remember to relax and look for the little things.  She then talked to the boys to try and help them calm down a bit and focus.  The day still didn’t end perfectly, but eventually the boys did finally click and they sang me “Happy Birthday” and gave me two precious birthday cards, complete with their signatures and a little message each. ❤  Then, after waiting for them to settle down again from their excitement, we settled in to play some card games and watch some Netflix together.

There was no cake, there weren’t any presents wrapped up in shiny paper and bows, and the birthday song didn’t even happen until after 11 pm…  When I look back at it all though, I see what mattered most did indeed happen.  My boys remembered me and I got to spend some special moments with them.  It was a good birthday. ❤

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Getting Connected

Morning everyone! Guess what? I actually got to sleep last night! Whoo hoo! lol David lasted for almost two weeks this round! Man will I be grateful when I finally can put a safety block on our door again.

Had an appointment with a new cardiologist yesterday too. They’re putting me on a heart monitor and doing a new echo on my heart to make sure I am truly stable. Been pretty weak again after a scary episode that took me down about a month ago. Depending on the results that come back, I will either be released with some instructions to help keep things stable or I will be starting discussions with the doctor about medications or other interventions. Can’t have my heart refusing to cooperate on me again like that.

In the meantime, the boys and I are starting to get used to our new town and neighborhood and are starting to get connected, slowly but surely. The boys and I are also getting connected with the EDS doctors we’ve been needing. Oddly enough though, my cardiologist (of all people) asked about genetic testing and when I told her of the mutated gene that no-one could explain that showed up on both of my boys’ reports she told me to make sure I told my primary care doc and have him get us in with the EDS geneticist specialists that will be coming through Boise soon. She thinks they may have answers to the mystery gene that might in turn provide some answers for my family. Worth a try in my book. : )

Hope this finds you all having a good morning! Please say hi in the comments. Would love to hear from you. 🙂

Let the Blessings Rain Down

Had a day full of blessings today! ^_^ Met with the bracing specialist today that our new primary care set up for me. He was awesome! Patient and kind with the boys, knowledgeable about EDS and even my other condition that has my leg all twisted up on the right, and very knowledgeable about braces. 🙂

Bad news is, he took one look at my current one and basically told me the place that did it for me cheaped out on me and used things that are now considered obsolete and then didn’t even make it right. He said there are extensive errors that would need to be addressed and repaired before the brace I have would work right.

GOOD NEWS is that he suggested tarting from scratch and building me a custom one that will truly hold me up and together like I need. One that will not allow me to keep dislocating inside the brace (my current one allows that and simply lets me “lock” myself into a standing position to try and prevent a fall). One that will secure both my knee and my ankle in a way that won’t sacrifice comfort for safety. He even is going to make it less of an eye sore for me. Said that having a bad leg shouldn’t mean I am forced to advertise it from a mile off. I couldn’t help but laugh at that one. lol 🙂

Best news of all?? I asked if all this would be covered by medicaid because I just don’t have the funds to pay for bracing out of pocket. He replied by saying there are forms needed from my primary and certain things that need to be documented, but he works closely with my doctor a lot and knows it will not be a problem. He then put together some papers that details exactly what needs to be done, including which form to fill out, wording that the insurance company will want to see, and details of the kind of documentation needed and how to include it. 😀 Then, as if all this wasn’t enough, he took my current brace and fixed some of the more pressing issues for me so it wouldn’t keep injuring me while I am waiting for the new one to come in. 😀

All this has a double fold blessing for me. 1) I am finally getting the help I have needed for all these years. There is even hope now of regaining some strength and stability! 2) The doctor who is arranging all this for me, is meeting with my children in two weeks! And he’s already prepared to start getting the same kind of help in place for them. ^_^

Thank-you to all who helped me get my family to Idaho and those that are continuing to pray for us. It is making a huge difference in our lives already and I couldn’t be more grateful. ❤ On a side note, we also are starting to see the connections come through on the Autism side of things too. We will be going to an Autism family cookout THIS Saturday! A chance to meet other families, get more information on local help and services, and there will even be a group there that will be teaching the kids how to fish! David and Joshua are really excited about that. lol 🙂

Happy Birthday Joshua!

Yep!  My little man turned 6 today! ^_^

DSCF3742-editedSince he was still awake at midnight (as usual lol) I had a little mini birthday celebration with him involving the birthday song, cuddles, and gathering all the mail and packages that had come in (thanks to his aunt and two amazing mail for kids groups). Our neighbor Pilar happened to be here to so she joined in with us. 🙂 I even let him choose one present and one card to open instead of having to save them all for morning. He was pretty excited to say the least and was having a blast until it came time for him to face that “one” really means “one”. I took this picture right after this little conversation happened (after he already opened one present and card):

Joshua: Now I am going to open this package! 😀

Me: No Joshua. You can’t open a whole package of presents tonight. That has to wait until morning.

Joshua: When is morning going to get here?

Me: After you finally go to sleep and then wake back up.

Pilar: Sounds like a good reason to go to bed right now then huh? So morning can come quicker.

Joshua: *slumps over package and gives out exaggerated sigh*

lol ^_^

A Dream Renewed

Although a few years back, it still can seem like just yesterday that I started this journey.  A journey of trying to reach out and make a difference not only for my son, but also for others like him.  As the years passed my vision and passion grew, but sadly my health weakened.  I couldn’t take the physical strain of running what DogForDavid was becoming, but I also didn’t have the heart to let go of it and the impact it was making.  As I have frequently said since the beginning, if all my effort amounted to was one person with a change of heart and new eyes to see past the labels and disabilities, than it was worth it.

By God’s sweet grace and provision, I have been blessed to be able to do much more than that over the years and reach much farther than I could have ever dreamed possible when I started out.   Still, my dreams always seemed to be held back… they always had that ceiling to them that I couldn’t penetrate no matter how hard I tried.  And the harder I tried, the worse my health plummeted until it got to the point where I had to give up.  The beautiful part though is that when I finally found the strength to let go, to let my dreams seemingly fall flat and lie motionless in the dirt as life forced me to turn my focus to other things, those very same dreams started to come alive.  It was slow at first, and felt quite dormant for a while even, but it was in my willingness to finally lay them down and accept that the door was closed that I discovered the key I had been searching for all this time.

After having taken the needed time to deal with my health issues and regain some stability, I started timidly reaching for those dreams again.  Slowly picking them up, sorting out the pieces, brushing away the sand and dirt…  Upon discovering my health was still too weak to put them back together myself, I decided to reach out just one more time.  One more attempt to light a fire that would catch in others’ hearts and minds as well.  One more extension of voice and heart asking for help in keeping it alive.

DogForDavid has now become Stripes and Puzzle Pieces and is seeing a growth spurt that I could only imagine about before.  I stuck my foot out on the ledge, reached out my hands, and closed my eyes in earnest and heartfelt prayer and the result has been both exciting and humbling for me.  A lot of things have changed and yes, some of the changes were hard for me to accept at first (namely having to put the dream of David’s service dog on hold indefinitely), but overall I stand in awe of what God is doing with the dream He planted firmly in my heart around David’s 4th birthday.  A dream to make a difference.  A dream to help others see what I could see… a child first and foremost.  A child who struggles with a disability or condition, but who is not defined by it.  A human being with hopes, dreams, joys, and fears just like the rest of us.  Someone who both needs and deserves just as much love, acceptance, compassion, and respect as the rest of us.

Starting with David, and branching out from there as the DogForDavid world allowed more and more lives to touch mine and stake their claim in my heart, I wanted to make a difference for them. A difference that would truly mean something, one that would truly help them and their families. Just as a fire in nature can be as beautiful as it is devastating, so can it promote new beginnings and fresh starts after it has run it’s course. I have found the same to be true when dealing with a fire in the heart.  My passion and fire shown brightly for a while before my health turned the tide.  But under all these ashes and soot, new life is springing up through faithful volunteers and fresh new faces and opportunities and those precious dreams are finally starting to come to fruition.  I may not be leading the charge anymore, but my heart couldn’t be more grateful or more at peace with what’s happening.

Outsiders

“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. ❤

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New and Revived!

A BIG thank-you to all my readers and followers who have stayed with this blog through my silence.  This site started out as a sister blog to “An Autism Diary”, and is part of the DogForDavid family of sites (which you can now see featured along our side bar on your right 😉 ).

Please check out our different pages (and consider following them to make sure you don’t miss any updates from us), and give a quick read to the new description for this site called, “The Zebra Chronicles” found on the front page. 🙂  Also note, that we have the same address (www.BeyondtheAutism.wordpress.com) but a new name (Stripes and Puzzle Pieces).  For more info on DogForDavid as a whole, please check out our main site, www.DogForDavid.com, and while there, check out our FAQs page too for the answers to our most common questions received. 🙂

Thanks everyone!  And as always, please feel free to comment and offer feedback.  I appreciate hearing from my readers. 🙂