Thursday, August 22, 2019

Less Than a Million Words

Hayden's teachers this year asked parents to write a short essay about their child, "in a million words or less." Here is my submission.


How do you sum up your child in a short essay? Not even a million words would do and yet, maybe only a few are needed. Or even just one.

Hope.

Hayden is an amazing person who has inspired hundreds, perhaps even thousands, of people. He is fun, witty, and kind. He cares about others and always wants to do his best. He has overcome so much in his life, but can’t see for himself how far he’s come. He only sees how far he has to go. He needs and loves praise from others, and wants desperately to be just like every other kid at school. He’s confused, like every other 7th grader, about his emotions, his changing body, and his future.

Hayden is first and foremost a teenage boy who is special because of who he is. He loves babies and video games, spaghetti and ice cream, big dogs and Garfield, swimming, and his friends. Like anyone, he has things that he’s great at, and things he needs to work on. Hayden also has Autism.

In 2010, the year he was diagnosed, I began writing a blog about Hayden called Hope and Lavender. The progress he has made since then is nothing short of extraordinary. That year, at the age of four, he could only speak a few words and required full day therapy. He would hit and kick and destroy things on a fairly regular basis when his emotions overwhelmed him. He couldn’t or wouldn’t follow directions, especially if it was something he didn’t want to do. He couldn’t wait for much of anything without lots of toys and snacks involved, and he definitely couldn’t sit still. He couldn’t be around large groups of people, like at a game or concert, or anything that was even remotely noisy. And when anyone around him would start singing he would say, “No singing!” No one was allowed to sing around Hayden.

I share this to show perspective. I want others to see Hayden as I do. As a person who requires support, but who’s also capable of amazing growth, tenacity, and strength.

Last year I wrote a blog post about Hayden’s first choir concert. That night he stood on stage with 50 other kids and sang. He stood still during the concert. He sat still for the half hour before the concert started and for another 45 minutes after his group sang, listening to the other three groups.

He was nervous beforehand; he didn’t want to make any mistakes. His nervousness made me nervous. I didn’t know what to expect. I daydreamed of having to run up on stage and escort him off while he was screaming and yelling. In my mind there was a 30% chance I would actually have to do that. But those days, I believe, are now past us.

As he stood on stage, just one of the kids, and I thought about my Hayden from nine years ago, I was moved to tears as I watched him sing.

That night he did the opposite of everything I listed above from the Hayden of 2010. He used his words and kept his emotions in check. He followed directions even though he was sometimes bored or nervous. He waited, and stood amongst and in front of hundreds of people. He listened to and sang with others to un-preferred songs. For almost an hour.

This is just one example of recent milestones for Hayden. He continues to inspire and surprise us, and by sharing his story, with his permission, he has become a symbol of Hope for other families all around the world, through social media.

I will always love Hayden, no matter what he does or doesn’t do. But I’m also so very proud of how hard he has worked to get to where he is, and I can’t wait to see what’s next for him. He truly is an inspiration.

Hayden wants so much to have the same opportunities and the same experiences as everyone else. I hope that this year, if you see him struggle, you will help him to overcome his fears and hurdles. That you will see him for how far he has come, and who he is, not just for how far he has to go. That you will encourage him to try new things, and reach out to me as needed, so that we can work together to help Hayden realize his dreams.

Thank you for this opportunity to share less than a million words with you about Hayden. I’m looking forward to an amazing year for him, and you as well.

Image of Hayden showing that he's become too tall to use the monkey bars. As always, his humor shines through.








Wednesday, August 7, 2019

First Day of 7th Grade

Last night Hayden was very anxious about the start of school. He was worried that his combination lock was too slow, that he didn’t know where to go first (his locker or homeroom), and that he wouldn’t find his classes. Joseph and I told him that there would be lots of teachers there to help, and that he could ask an adult if he wasn’t sure what to do.

I worried that he wouldn’t pay attention on the bus ride home, and would miss his stop. I worried that he would get upset with himself, or feel embarrassed about something. I worried that I hadn’t done enough to prepare him for so many changes at once.

But today Hayden walked into school as a 7th grader. He independently went to the cafeteria to wait for school to start. He asked an adult where to go first (locker, then homeroom). He found his new locker and used the new combination. He shared his new phone number with his friends. He went to all of his classes and as far as I know, had zero issues. He paid attention on the bus and when he saw his neighborhood, he got off the bus at the right stop.

He used his new house key to come in the house and texted me and Joseph when he got inside. He followed his checklist and chatted with Grandma and Grandpa, who came by to make sure his first day went ok. He texted me that he didn’t have any homework, and later asked if he could play Minecraft with his friends. He and his friends were on different platforms and the game wouldn’t work, but Hayden tried several different ideas and wasn’t overly frustrated when they all gave up.


He said “ok” when I told him screen time was up and stopped playing his game. He came to the kitchen and started cooking his dinner when I asked him to. He made spaghetti with meat sauce on his own, without fear of the hot stove, and when he accidentally dropped some ground beef on the floor, his frustration level was only a 3/10 instead of an 8/10. When the noodle water started to overflow, he calmly moved it off the heat.

When I asked if he wanted to get his shower while I finished up his dinner, he said, “Well of course I’ll take you up on that.” Usually there is complaining about showering, even though he loves it once he’s in there.

He got his towel on his own but shouted for me after a minute. Rylie went up to see what he wanted (he forgot his washcloth), so I brought him one. He’s long struggled with time management in the shower, but today he washed his hair and body quickly and came back downstairs.

He asked if I put spices in his spaghetti and I told him I didn’t know how much he likes. So he said, “Oh, just a sprinkle” and proceeded to get garlic powder, oregano and onion powder out of the drawer. When he couldn’t find the onion powder he asked for help, but ended up spotting it in the drawer when I couldn’t find it. He sprinkled spices on his food without help.

I told him, “when you finish eating and taking your pills [vitamins], come upstairs. We’ll do some quick housework together and then you can have more screen time.” He didn’t hear me so I had to repeat myself. He said something rude about Rylie and I told him to be nice. (He’s a teenager, so I give grace.)

In a few minutes he came upstairs on his own and helped sort laundry with me and Rylie. Then we went downstairs and he chose to take out the recycling instead of doing dishes, but wanted a short break first. After a few minutes of him planted head-first on the couch, I told him that he would need to get going if he wanted more screen time before bed. He popped up and took out the recycling, forgetting that it’s in the garage and not outside, but remembering to bring back the plastic bag.

At bedtime I was joking with Rylie to bring me some of her hangers “stat”. He walked by and said, “Oh, is that a Short Circuit [movie] reference?” [It was.]

As I said good night to him and we talked about his day, I explained that he needed to be careful about what he said to his friends on his phone. I’m used to repeating myself about three times with him, telling him the same thing but in a different way so that he hears me and understands. He’s always had trouble focusing and processing. After I said it the third time he got annoyed and said, “Ok mom, I get it.”

So to lighten the mood before bed on his amazing first day, I started to say the Squirrel Pledge of Allegiance. I’m not sure why I came up with it or what all was in there, something about thanking cats for not eating me. I ended it with an Amen.

Hayden said, “Do squirrels even believe in Jesus?”

And we cracked up.

Yesterday I worried that he wouldn’t be able to do today, but deep down I knew that he would. He not only did today, he rocked it. Today he did things no one would have imagined him doing on his own nine years ago, or frankly even a year ago. Nearly every thing I’ve listed him doing in this story, he could not do on his own until recently.

Looking back at his diagnostic report at age 4, absolutely zero hope was given to me as a parent. It recommended medication first and foremost to “manage” his behaviors, then various therapies. But it didn’t say that he could get better. I know every child is different. But I also know in my heart that every child can improve in some way. They can have a better quality of life than what’s portrayed on that piece of paper.

I write about Hayden because I’m his mom and I’m proud of him. Not just as a person with autism, but as a person. I’m proud of who he is and what he does, and what he’s overcome.

I also write about Hayden, with his permission, to give others Hope. Because nowhere on that damn paper, the one that listed the thousand things he couldn’t do well and the three he could, did it ever say that someday he might be able to ride the bus home alone and have a conversation.

So I want to write a new paper. To tell all the moms and dads that they can change that crappy paper they got. They can write their own, but we can share ideas and work together. Their paper will look different from mine. But all of our papers can have good things. More good things than bad.

My paper will start with, “There is Hope for Autism.”

And it will end with a picture of Hayden.

Hayden IS Hope
Autism is treatable
FUA



(From yesterday's Facebook post about Hayden's first day)

Thursday, July 11, 2019

Independence Day

I wrote this Facebook post while we were on vacation last week: 

Today Hayden truly inspired me. It was a combination of things, but it started with one moment on our bus ride to the park.

When we first boarded the bus to Animal Kingdom, he took a spot behind us. As we’re riding along I hear a bunch of college kids talking, and Hayden is chattering right along with them. I couldn’t tell if he was on-topic or appropriate because it was too loud, but if he wasn’t, no one seemed to mind.


There was a time when this level of independence and social awareness would have been impossible for him. Today he went with the flow and was one of the guys. He rode along without complaint, seemingly indifferent to the noise and crowding; he was just happy to be a chatting it up with strangers he’d just met. He did the same on a ride later in the day as well. 

Sometimes I’m amazed at what he can do and how far he’s come. Today Hayden rode a real roller coaster twice, waited patiently in multiple lines, dealt easily with frustration and fear, and walked over 11 miles in 100 degree heat, with next-to-no complaints. His sister got a toy while he was on a ride, and he didn’t even ask if he could get one too. (We’ll help him get a souvenir later.) Our entire visit to the park was one spectacular wow after another. 

There are things he’s working on, of course. But don’t we all have some things? Today was all about what Hayden CAN do, instead of what he cannot. 

I am very grateful for the disability accommodations provided by Disney, which helped make our day go so smoothly. These accommodations meant less waiting and frustration for him, and ensured that he had a chance to do all the things he wanted to do today. 


But in the end, my kid works hard to be the best he can be, and I couldn’t be more proud of him. I’m beyond thrilled about how well today went and will treasure this day for a long time. It went well because he chose to have a good attitude and go with the flow. It went well because he made it that way.

Every day he shows me that he’s capable of more than anyone once expected of him, and I’m so excited to see what’s next for him on his journey.

Hayden’s truly amazing show of independence this trip is fitting for our Independence Day vacation. He showed us how far he has come and how well he handles change and adversity now. We're all truly blessed.

Autism is treatable.

Hayden is Hope.

FUA


Sunday, June 9, 2019

My 'Why'

Yesterday was the big day. I worked for 6 months to organize the Pathways to Hope Autism Conference for local families, and yesterday it all came together.

This was the 6th year for this event. It's the only one of its type in the state, and I believe in the Midwest.

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The first year I planned this event, there was just one track of talks, six speakers, no vendors or sponsors. I had never organized an event of this type, and had no idea what I was getting into. That first year I was just doing what I could, and yet it was a huge success! We brought in a nationally renowned doctor from out of state. We had 150 people in the building. We helped many families.

As the event has progressed, I have added features for different reasons. Two tracks, and vendors, to bring in more families. Scholarships for families who can't afford to register. Sponsors, to help cover costs and provide giveaways to attendees. The option to purchase lunch, so that attendees can stay on site and make connections with each other. For several years, a parent panel, which allowed moms to share their stories of hope with new families. This year, we added interpreters, so that moms from the deaf community could join us for the event.

This year, we had 2 tracks, 8 speakers, 10 sessions, 12 vendors, and 12 sponsors. My final to-do list had 129 items on it.


I have been lucky to have many helpers with this project; people who believe in me and/or the reason for this event, and so have shown their support in many ways. Some stuffed folders, delivered fliers, sent emails, purchased supplies. Some moved chairs, created signs, introduced speakers, or worked the registration table. I could not have put on an event like this alone, and I'm so grateful to each of them for their help leading up to, at, and after the event. 

I'm also grateful for the support of my workplace, Cornerstone Autism Center. I am glad to have had the opportunity to bring this event to our families and community.

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My friend Christine was a vendor with Wildtree

Organizing an event of this size is daunting. Coordinating over 100 people, including vendors, sponsors, speakers, interpreters, volunteers and attendees, is a monumental task. I have help, but in the end, the majority of the work comes down to me. I say this not to brag or to complain, but to be real and authentic, and honor my truth. Each year, at some point, the event becomes overwhelming to me. I ask myself, why? Why do I work so hard on this event? Why do I sacrifice so much, and continue to choose to do this event every year? Why is this so important to me?

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Registered Dietitian Staci Small speaks in Room 1

But each year I hear the feedback at the event and afterward, and I gain a boost of positive energy. I'm reminded of my 'why': "This was amazing." "This was so needed." "Great event, well run, tremendous organization!! I’d love to return in the future." "I didn't know there were so many resources." "This event gave me hope."

And so each year the conference has taken place, with tweaks, changes, and improvements. Each year the event takes a new form, and Hope comes alive for one day.

I realize that my reason for doing this, my 'why', has so many facets. I want parents to know that their kids can get better. I want to see them encouraged to help their kids. I want to give them the tools to do so, to see them begin to implement those tools, and to hear later that their kids are improving.

I want to help all of the children.

But this conference needs to change in many ways if it's to continue. I don't know what the next event will bring.

I do know that I want to do things differently. It can't be what it is now. But it can still be. And that gives me hope.

Members of the parent support groups Hope for our Children and Indiana Biomedical Kids
I know that I want parents of all kids with (dis)abilities to see that their kids can have a better quality of life. I know that I want to expand the resources offered. I know that I want to keep Hope alive. And I also know that I want more help. 

If you would like to contribute in some way to the next event, please reach out. Let's brainstorm together.

Today, though, I rest. I bask in the magnificence of playing an instrumental role in an event of this size, which brought resources and information to so many. I pause to consider its impact, and how it can grow and adapt to my needs as well as those of my community.

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I did this. I created something big, and wonderful, and amazing. I believed in it, and I made it happen, and I'm really, really proud of it.

Thank you to everyone who was a part of this year's Pathways to Hope Conference. I am so grateful for all of you. Thank you for being a part of something that means so much to me. For believing in me. For your part in this thing that was bigger than ourselves.

And now to rest. Recharge. Recover.

And dream-- of what the future can bring. What new, big things we can do together. What inspiration is waiting for us, just around the next corner.

Because truly I know that tomorrow can always be better than today, and that there can always, always be more Hope.



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Thursday, April 11, 2019

6th Annual Pathways to Hope Autism Conference

Registration is now open for the 6th annual Pathways to Hope Autism Conference in central Indiana!



Gain new ideas and make new friends. It's an amazing day of learning! This event will explore medical topics often experienced in children with Autism, such as
  • aggression
  • sensory issues
  • allergies
  • constipation or diarrhea
  • acid reflux
  • picky eating
  • sleep difficulties
  • frequent illness
If any of these topics apply to your child, please consider attending! Multiple sessions, giveaways, free resources, and vendors!

Visit our Facebook event page for more information: https://www.facebook.com/biomedCAC

Register today! http://getmeregistered.com/BiomedforAutism