Sunday, October 1, 2017

Definitions


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. 



FUA.










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

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Autism.

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.

Friday, September 8, 2017

Friday FUA: Goals

This week Hayden's Centrality therapist had him share with me his goal for the year. Apparently he came up with this all on his own. He said his goal is to be more mature. I almost started crying. This kid SO wants to be more like everyone else his age. He not only knows what the word mature means, but when asked, of all the things he could focus on this year, he used that word to define what he wants for himself.

He tries so hard and I'm amazed every day by the new things that he is able to do for himself. His focus is better. His mood is better. His attention toward others is much improved. My goal for him to one day be independent is still very much within reach and it makes me so happy and so proud.

This summer I was in the laundry room. I asked Hayden to come help me with someone. He came right away. I asked him to go to his closet and bring me some hangers. He went right there, came right back with the hangers, and handed them to me, saying "give me back the extras when you're done."  What?  You care about the extras?  

A few weeks back he and I were at a restaurant together alone. I went to use the restroom and when I came back the server came to me and said, "your son wanted me to let you know that he was in the restroom." What?? He found a stranger (safe adult) and asked them to tell his mom where he was so I wouldn't worry?

These are just two examples of how far he has come and the major breakthroughs we are seeing these past few months.

Then today at his school one of his aides told me that she had considered going to half time at work this year but one of the main reasons she didn't was because she wanted to continue to work with Hayden. She said he's so hard on himself and yet he's one of the smartest kids in the class. He makes her laugh and he's so witty. He's a joy to work with.

MY kid made her want to keep working with kids with special needs.

I don't know how I got so lucky as to be given this child from God but I am so grateful to be his Mommy.

Or Mom as my 'mature' son would say.

Beyond blessed.

#AutismISTreatable
#FUA

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Friday, September 1, 2017

Time Timer

This is one of the best purchases we've ever made. It's called a Time Timer. You set the red section for how much time to do a task. It slowly moves and gets smaller until there's no red left. When time is up there's a quick alarm as well.

We use it for how much time there is until bedtime, or until we have to leave in the morning, or how much screen time the kids get. The kids can set it themselves for the amount of time we give them, and they (usually) hop right up when the time is done. It helps my son with autism to plan and pace himself, or speed up to get something that he wants. Like I said, well worth the money. We have two. Here is an amazon link. The little size is better because it fits on a desk and doesn't take up as much room.


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Tuesday, August 29, 2017

First weeks of school

He has had really good days at school with only a few minor behaviors since school started!

His sister's crying has been a major trigger for him in the past. The other day she kept crying repeatedly (maybe 5 separate occasions one night) and he yelled on the last two times. He wanted to run off to his room but we really needed to finish his homework so he could have his reward (screen time) before bed. So I encouraged him to get through the work and had her leave the area. He did so well remaining calm and getting his work done despite his frustration!

Yesterday he went to the orthodontist. He was very nervous about whether he would need x-rays and kept verbalizing that he was nervous. During the visit he let the orthodontist touch his mouth even though it made him uncomfortable. He did a great job through the exam.  So proud of how far he has come!

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