Tuesday, December 5, 2017

So proud!

Beyond proud of Hayden! I was looking in his homework agenda last night and at the very bottom he had written "I was supposed to get candy today." I asked him what it meant and he said he had earned a piece of candy but time ran out and his teacher didn't give it to him. He was frustrated so he wrote it in his agenda. I asked if he yelled, or ran out of the room or hit anyone. He said no, that he just wrote it down. OH MY GOSH! This is huge for him to not get upset when he was denied something he really wanted and had been promised, and I'm beyond thrilled about how he handled it. He has been handling more and more situations in a similar manner lately and it's amazing to witness. I told him several times last night how proud I was of him and gave him some candy (a sucker) at home as a reward.

Just wanted to share!

Wednesday, November 22, 2017

Cornerstone News

Check out this video my son made for our yearly staff meeting!  He has come so far and we're very proud of him.

We are thankful for Cornerstone

Autism is Treatable!  FUA! 

Monday, November 13, 2017

Robotics Team

Hayden is very excited to have made the school robotics team! I was very proud of him at the first meeting. The teacher was explaining the different roles that the kids could choose from. She said that if the kids liked the programming activities they did in class sometimes, they might like to do the programmer role. Hayden perked up at this and got excited. But then she said that sometimes that job is the most frustrating, so if you’re a person who is easily frustrated, that might not be the job for you. 

After she finished explaining all the jobs and asked the kids to write down their preferences, I went over to see what Hayden was going to choose, in case I needed to steer him away from the programming job. I asked him what role he was going to choose and he said that he liked the idea of the programming job but he sometimes gets a little “rage-y", so he thought maybe he should choose the research job. I said that was true, and told him that he might be good at the notebook job because it involved drawing and he is good at drawing. I left to let him choose for himself. 

Later I asked the teacher what he had chosen and she said that he chose the notebook and the research jobs. I'm so proud of him for making a good choice of what would be most appropriate for him to do rather than what he thought might be the most fun!! Joseph told him that was a very mature choice. 

He later said that he figured this meant that he couldn't do his dream of becoming a Nintendo programmer when he grows up. I told him that's not true at all, that he just isn't ready for that role right now, but it's still an option in the future.

Here is a YouTube video of him making the announcement! Way to go Hayden!

Sunday, October 1, 2017


Six years ago, these are the words I used to describe my son:

"This is who Hayden is. He is Autistic. He screams about everything. I've lost hearing. Everything makes him upset and nervous and afraid, and he can only say a few words so he can't tell you when he's scared or tired, or why. It defines him. At least for now. Maybe I wish it didn't. But it does."

For the most part, those words are no longer true. 

Take a moment to let that sink in.  Most of those words are no longer true. 

When a child is diagnosed with autism, most parents are told there is nothing they can do. Nothing. Accept your child as he is. Prepare to put your child in an institution. Some are told to do this sooner than later. Many children with Autism live in residential facilities, away from their parents.

And yet by the grace of God, I stumbled upon groups of parents who were saying otherwise. They were saying that there were medical reasons behind much of the behavior of people with autism, and some treatments were causing remarkable improvements. Some people were "Recovering" from Autism: these individuals had improved so much with the help of doctors and therapies, that when re-diagnosed, they no longer qualified for an Autism diagnosis. Autism no longer defined who they were.

I chose to follow that path. The path of Hope. I set a goal for Recovery.

In the seven years since starting therapies, Hayden has gained his words. He has become more confident and less afraid. He no longer needs noise-blocking headphones everywhere we go and no longer needs help with every simple task. He helps others with some of these same tasks that he once found so difficult. 

Hayden balancing, interacting with a novel peer, and accepting defeat graciously and without incident.

Six years ago I also said,

"I heard that Autism was curable, but I didn't really believe it. Being able to get through a store without meltdowns is like a dream you hope for but know will never really come true."

If I took 4 year old Hayden anywhere, by the end he was overwhelmed by the sounds and lights and people, and would be screaming in the checkout and trying to run away from me. Pretty much every time. 

Within a year of Biomed and ABA, screaming in the store was rare. 

Today he handles a store like any other child would. He asks politely if he can visit the toy aisle. He accepts a No answer without complaint. He asks if we're done yet. 🙂 He helps bring the groceries into the house if we ask. 

Hayden still has Autism. He has new challenges now, and some days are worse than others. Last week was a rough one for our family for various reasons. Sometimes the continuous strain can wear me down.

But my friends lifted me up and helped me refocus. I do have to pause and reflect on how far he's come. Much further than many ever thought he would. So I looked back at past posts and found this one from September of 2011. It was wonderful to be reminded of where we used to be, and that we're no longer there.

I continue hope that one day we will be able to tell the world that Autism is a part of his past. As a family we will continue to push forward with new ideas while keeping in place our tried and true interventions. We have our annual appointment with our MAPS doctor in Chicago coming up in a week, and we're excited to see what our next steps are.

But I would no longer say that Autism defines him. When he was a screaming, crying, non-verbal mess... I did believe that. Autism defined him.

He was unable to speak or tell us about his feelings or preferences: What he wanted to eat. Where he wanted to go. Who he loved. Imagine being unable to explain to others that you hate wearing socks, eating green beans, or being in loud places, for example. He was stuck in that abyss with limited ability to show us who he was and who he could be. It limited his capabilities in the moment and his hopes for the future. It barred him from the quality of life I felt he deserved. It ruled his days with lining things up and spinning instead of enjoying the company of others, and screaming through a movie instead of enjoying it. It controlled every aspect of his life, and sometimes ours as well.

Today Autism is just one piece of the person he is. He is so much more: artist, comedian, friend, gamer, designer, avid reader. An independent future is still within reach for him.

Autism no longer defines my son. 

Through the hard work of many, including Hayden himself, he has overcome many of the difficult attributes of Autism. He inspires me daily and it is my honor and privilege to share his story with you, with his permission, that you may gain Hope from it, and in doing so lead your own child to grow in turn.

Autism is treatable. 

Follow the path of hope. 


I have to make this footnote, because this blog is read by people with high functioning autism, who may take offense to this post. Maybe some will disagree with this sentiment, but it's just my opinion. Others can have differing opinions of themselves or their children, and that's ok. Maybe you don't feel that Autism defines you or your child. Maybe you or your child are able to communicate your wants and desires. This is not the type of Autism he had. He was lost without the assistance of others. I'm not trying to define for you or your child who you are or what you or they can do. But I am explaining what defined my son and his opportunities for the future. Thanks, as always, for reading.\

Thursday, September 21, 2017

Autism is hard

Image may contain: 1 person, smiling

Why does it have to be so hard?

Schoolwork and IEPs are hard.

Driving back and forth to therapies. Money for this and that.

No time to just be a kid. To be together as a family.

It makes me tired. Then tonight Hayden told me that his friend in class told him today that he will no longer be his friend because he has Autism. He said he feels sorry for him.

Now he's questioning if any of his friends are real. If anyone really likes him. 

My heart is broken for him.  

I'm so tired of the battles.  I'm so tired of the comments and the demands and the rushing here and there.  

I just want him to have a good life. To do his best. To be happy. 

I don't understand why it has to be so hard.

I know this blog usually ends with a positive. 

But today I'm sad for my son. For all he's missing out on. For all he endures.

I'm sharing because I hope you'll educate others. Please help spread the word, that people with autism deserve a good life, like anyone else.  They are people too. 

Send up prayers that tomorrow will be a better day.

Edit 9/23/17:  Thank you to everyone for lifting us up. I have talked with Hayden extensively about friendship, reminding him of who he has on his team and the nature of making friends at this age. We will continue to explore it but he is happy and hopeful about the future.