Sunday, July 30, 2017

Flashback: 7/20/15

So this guy volunteered to pick up both kids after school, take them home for snacks, and meet me at the splash park where I was supposed to be for work.

Hayden agreed to leave the Y early, a favorite activity. But once home he couldn't find his swimsuit and was upset. (Turns out it was in the trunk from a few weeks ago. Eww.)

At the splash park Joseph told Hayden it was ok to play in his shorts in the water. Hayden couldn't get his mind around wet underwear and was sulking. So Joe jumped in and got wet himself to try and convince Hayden that it would be ok. Hayden didn't go for it (but we were proud that his fit was only mild!) so Joe asked if he'd like to go to That Fun Place (an arcade) instead. They sat and discussed it on the playground. I came over and heard Joe say, "but don't tell Rylie. Just tell her you're leaving." (She was already wet and wouldn't be able to go.)

Hayden told Rylie goodbye and the boys went off to play laser tag (Joe in a wet shirt and shorts.) We met them at home later where Joseph made three meals. Hayden wants Mac n cheese for dinner every day. Today he requested spaghetti so Joe made him some, made Rylie sausage, and us beef and noodles. Then he thanks me for doing vitamins because "he's been slacking."

I'm not sure how in the world Chelsea knew when she saw him. But she walked into our office two years ago and announced to the group, "You guys. I found Sheila's husband." I keep replaying it in my mind.

I'm just so glad she did.

Joseph, soaking wet, about to take Hayden to That Fun Place. 

Monday, July 24, 2017


Today Hayden filmed a short commercial for our annual company meeting. It will only be seen by company staff, not the public, but it will be awesome nonetheless. Hayden memorized his lines and performed them perfectly. He was funny and had a great time.  I'm really looking forward to seeing the final product!

Monday, July 17, 2017

Kids Day

When Joseph was growing up his parents had a tradition they called Kids Day, where the kids got to choose the activities for the day.

Last week we had our first ever Kids Day and it was a big success! We had gluten free donuts, play time at Zip City (out first visit!), two new-to-them books, dinner and gluten-free cookies, and a trip to U Paint Pottery. At dinner we went around the table a few times sharing something we liked about each kid, building up their confidence and helping them feel valued as a person. The kids both had sweet things to say about their sibling.

We don't get a chance to do these kinds of activities together as a family very often and it was fun to spend time together doing things just for the kids. No therapies, no doctors, no stress. Just fun and quality time together. Rylie kept saying she was in Heaven and was sad to hear that Kids Day was coming to an end. They slept well that night!

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It was a great day and I wanted to share the idea in case other families wanted to implement Kids Day sometime in the future.

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Sunday, July 9, 2017

ARI Post

High Pain Tolerance


He went a week with a broken arm without asking for pain meds or to get it checked out. I took him to get an X-ray after he said it hurt to even touch his wrist a week later.

"I can't prove it, but I think people with autism process pain differently," said the ortho doc.

Yes. Yes they do.

This is the same spot he has broken twice before. Prayers for speedy healing! 

Where to Start?

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Saturday, July 8, 2017

Riding A Bike

Treating autism is often two steps forward and one step back. This week has had its ups and downs (Read: broken arm incident), but there are so many gains to report with Hayden lately and I'm really excited for him! Here is a big one that we need to share.
Two weeks ago Hayden attended I Can Bike camp to learn how to ride a bike. He had some experience in the past with riding, but always with training wheels that were not super sturdy. He had become afraid and embarrassed to attempt to ride his bike and was unwilling to give it a try.
A week at this camp for special needs kids and he is now riding in the culdesac with the neighbor kids (and apparently even in the grass!) with no issues. Even starting and stopping have become easy for him, and that was a struggle right after camp because they mostly focused on balance.
I worried when he broke his arm that he wouldn't be able to keep practicing, but he asked to get his bike out the next day (partly because the neighbor girl was riding, and we think he may have a little bit of a crush on her.) 🙂Reluctantly I said Yes and he has been just fine. More than fine. He looks like he's been riding for years.
I grew up on a quiet dead-end, playing kickball in the street and riding my bike with my neighborhood friends. I'm so happy that Hayden has the chance to enjoy this typical part of childhood. No more training wheels, no more fear. Just chatting with his friends on their bikes on a beautiful summer evening.
We are so proud of you Hayden!

Monday, July 3, 2017

Hope for Autism

I asked Hayden to help me give hope to other parents looking to help their children with autism. I asked him to explain what it was like before treatment for autism, if he could remember, as well as what treatments he thought were helpful. I didn't coach him beforehand, and he didn't practice. This video was the first take.

You can see that there are still issues with focus and stimming. And there are some other things he still has to work on like the anger issues he mentions. But he is telling a story without prior prep, making eye contact, dealing with interruptions, and employing humor in his presentation. This kid has come so far from a child who was non-verbal with frequent behaviors at age 3!  We are so proud of you Hayden and can't wait to see what the future brings with your hard work!

Autism is treatable!


Many people with autism and other disabilities have Medicaid because of their disability. My son is one. He just received his Medicaid card last month after a year on the waiver waitlist. The rest of his family does not have (or need) Medicaid.

He has it because, not too long ago, there were few options for services for people with disabilities. As a result, many people with disabilities ended up in residential facilities, either as children or as adults. The idea of the waiver system came about to help get these individuals services, to help them become more independent, allowing them to live in their parents' homes or on their own in group homes or apartments. Instead of a lonely, scary, often poorly-managed institution.

The Medicaid Waiver allows individuals with a developmental disability to qualify for Medicaid regardless of their parents' income. The Medicaid waiver gives these individuals Medicaid which they can use for medical services such as the doctor, dentist, and ABA therapy. It also gives them a separate bucket of money that they can use for services like occupational therapy, physical therapy, speech therapy, parent training, and more. My son can now access these services because of the waiver, to help him become more independent and hopefully some day have the opportunity to live on his own.

The current bill in the Senate will cut services for individuals with disabilities including waiver programs. This means that many individuals currently receiving services will no longer be able to. Some of the services are very expensive and families are not able to pay for them out-of-pocket. These families may lose both waiver and Medicaid coverage for their children.

I hope that, as someone who knows someone with a disability (Hayden), you will consider the impact this bill will have on him, and if moved to do so, voice your concern to your representatives that these cuts to Medicaid should not be made. I believe that individuals with disabilities deserve to have the opportunity to live as independently as possible, and the Medicaid waiver system was put in place to help them do so. This bill will have a huge negative impact on this population. I have contacted my representatives already on this issue and I am asking you as a friend to consider doing so as well.

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Hayden and little sis at his last special needs baseball game.