Friday, April 21, 2017


Yesterday was one of those meaningful life experiences that I hope I never forget. Yesterday was beauty. Yesterday was humanity.  Yesterday was a day never to forget even though it has passed.

I'm not one of those mothers who has her camera out every second trying to photograph every moment.  Not that that is bad, I capture a lot but yesterday I didn't capture much but in my mind I did. I want to tell you about yesterday and the beauty I experienced.  I am going to try to tell you this in a way that you too feel what I felt but I am not sure you ever really will.  Yesterday I saw the magic, and the beauty of human interaction.

Nick and I waited in the procedure room on the Hematology/Oncology Floor.  Nick had talked about his Doctor the day before and had pulled out all of his best Pokemon toys to show his doctor. His doctor came to the door.  The door and room has lots of windows so Nick saw him coming. As the doctor opened the door, Nicholas ran to him and jumped in his arms yelling Dr. Hanna, Dr. Hanna, Dr. Hanna. Nick literally jumped into his arms, hugging him. It was the sweetest experience I have seen in a long time.  Dr Hanna came in and told Nick that "he had made his day". Nick proceed to unpack his backpack showing Dr Hanna all of his Pokemon possessions. Dr Hanna sat and read a few pages to Nick from his "Pokemon Manual". He explained to Nick how there are some good Pokemon who warn you when something bad is going to happen, so they're really good guys. It was adorable, and it took everything in my power to just watch and not grab my phone to capture this moment.

Dr Hanna began to set up for the procedure, and Nick was a little nervous. The procedure began and Nick was asking a lot of questions as to what was happening to him.  He closed his eyes, and clenched them shut as hard as he could and ground his teeth together to get through the part where the needle sticks him. My job is to distract him talking about Pokemon, golf, etc.  He was peaceful though, very peaceful as he knew his friend was in charge of the needle that was entering his port that feeds medicine into his spine.  If it was possible to achieve peace in that moment, this was peace.  Dr Hanna finished the procedure, told Nick he made his day, and was off to his next patient after receiving a sincere hug from his favorite fan.

After that Music Therapy came in, lead by Arissa, to sing, dance, and laugh.  Nick made up many songs, and really rocked the Pokemon anthem. It was pure joy, and for a moment we didn't think about where we were.  We learned about instruments, and Nick remembered things Arissa had brought last time and made his requests again.  At times, he wouldn't comply with the song something he likely also inherited from his Mom.

Nick is a boy with so much love. He loves his family, his doctors, his nurses, Pokemon, and life.  This is who is being saved, this is who is being given a chance to fight for his life.  He is fighting, along with us, along with those who love him.  He is amazing, and I am thankful to be his Mom for he gives me beauty in the most difficult of moments.  Nick never forgets he is a kid, and neither should we.

Love Forever,

Nick's Mom

Tuesday, April 4, 2017

Don't Be Us

Some words of advice, "don't be us".

The right move as early as possible was to see a Developmental Psychologist through an Autism Clinic to assess the state of Alex's mind; how he learns, what skills he possesses, what deficits he has, and how he compares to peers his age.  This was the right move, and boy do you get a massive amount of data. It's amazing.

I remember the discussion with the team of doctors reviewing the mountain of data and the mountain of resources. Having a mountain of resources isn't generally a problem we're used to facing. The problem was we just weren't ready to climb that mountain.  We were staring at the mountain in disbelief.  Really?  Another challenge thrown our way, wasn't Hunter Syndrome enough.  It wasn't another mountain though, but we didn't realize it at the time. It was just what the disease (Hunter Syndrome) was causing. We just didn't know what to do with it because it seemed like an extra thing. It was just another slope on the same mountain. That big pile of data said that Alex had Autism. Okay. Now what?

I believe in getting second opinions especially when the diagnosis or surgery is transformational, life changing. Confirm it, then embrace it. Don't be us, embrace the Autism diagnosis. Why?  There is so much science behind an Autism diagnosis and treatment, and the science available is very effective. At the time though we didn't know it, it just seemed like a huge list of things to do and places to go and people to see.  We thought,"well, we know why he has mild Autism, it's because of Hunter Syndrome so if we focus on Hunter Syndrome we won't have to worry about Autism." Wrong, wrong, wrong.  One causes the other.  I (Amy) didn't really, truly know that until 2016 when I was reading through my son's student handbook for his school for Autism and realized all of the other diseases that also can be associated with Autism. For example,
Tuberous Sclerosis, ADHD, Down Syndrome, Seizure Disorders, etc.  As a parent, I wasn't aware that diseases can cause an individual to be diagnosed as Autism Spectrum Disorder (ASD). I always viewed ASD as a standalone disorder. This was clearly a mistake.

[ See this resource for more explanation of the connection between some genetic diseases and ASD:]

The other thing the team said when they gave us the mountain of data was Alex is so lucky to have you as parents, so lucky. Really?  So nice but why?  I don't feel like he was lucky that day. My brain was overloaded, all circuits were busy. I really felt like saying that mountain of data is nice but he has Hunter Syndrome first. Think about how ridiculous that thought process is - who cares what came first?  What gets priority?  Instead of approaching this the right way, I felt like Autism was something that was going to compete with the resources to support Hunter Syndrome. This was a survival response and it wasn't right.

Slowly with help, we started to realize what we needed to do.  Applied Behavior Analysis (ABA) is brilliant.  The negatives we were told about ABA are that it is a big commitment, it's expensive, difficult to find ABA professionals, and insurance doesn't usually cover ABA.  So that was a bit of a turn off but you should not be deterred. We were at first but you shouldn't.  In my humble attempt to explain ABA it's behavior analysis, looking for triggers and how to work with your child to address those triggers.  In a child with Hunter Syndrome, ABA is transformational. I feel so lucky to live in Cleveland, Ohio where some of the most renown resources are for ASD and ABA. ABA has definitely made a difference when it comes to Alex's progress.  Coupled with speech therapy, hearing aides and other therapies, Alex is now making great progress and optimizing his quality of life.

Don't be us.  Get the diagnosis. Confirm it.  Engage resources as early and immediately as possible and provide your child with the quality of life every child deserves.