Superhero

Superheros, yup that’s right I said it, superhero’s….. I have never been a fan of comics but I know a superhero. When I think about my life I have it pretty easy. I get up in the morning around 4:30 am; navigate my way to my computer, log into work.  I work for 8 – 12 hours doing geek stuff, and then I log off. I usually complain for a little bit (stress relief) then I eat dinner and it’s time to relax. Relaxing to me is paying a video game, playing with Aiden, talking to my wife, watching some TV then bed. Pretty easy day when you get down to it, I never had to leave the house; my commute takes about 35 seconds. I get to see my children and spend a little time with them during my day. I get a fresh hot breakfast and lunch delivered to my desk. When you think about it I got it made….

Around 6:30am – 7:30am am is when the superhero starts to buzz around the house, getting ready to save the world. First it starts with rousing the children for school, getting breakfast ready for everyone, getting dressed. Then she gets the little one up, dressed and groomed. His teachers say he had the best hair of anyone they have seen (enjoy it now buddy genetics are not on your side). Whoosh out the door to deliver the youngest for his day at school. She now has time to run errands, pay bills, interact with teachers, therapists, and the dreaded insurance companies.

She can navigate the insurance companies like no other and at this point I am sure they hate knowing it’s her on the other line! Dealing with insurance companies for Aiden’s therapies can be a nightmare. She deals with the primary, then the secondary when the primary won’t cover the therapy.  Then it’s first, second and third level grievance hearings

She packs this all in between 9:00am and 2:00 pm. Now she is off to pick up the little guy, then to any special therapies that Aiden has after school. This could be hippo therapy, speech therapy etc.  Now she is on her way home, her day does not even come close to ending. After school snacks for the kids, helping with homework, word games with Aiden, dinner….the list goes on and on and so does her day.

So who is this superhero? Who is this amazing woman? Her simple name is Karen, her superhero name is ……..MOM. 

Here is to all the moms out there you are truly superhero's!!

Inspire, Teach, Hope and Love

I saw this saying on an autism awareness site today. Inspire, Teach, Love and Hope. I thought about it for a bit and realized this really goes both ways when you have a child on the spectrum.

Inspire: My son Aiden, Inspires me every day. He inspires me to learn as much as I can about Autism, He inspires me to be the best father I can be for him. He inspires me because despite his limitations in the nurotypical world, he plays, laughs,  he interacts, he loves his family. He really inspires me because I can see the intelligence waiting to be unleashed.

Teach: Aiden teaches me everyday to love unconditionally. He taught me to open my heart to people with differences. He has taught me that people learn differently, and when you unlock that, the amount of knowledge that can be absorbed is amazing. The two most important things he has taught me is patience and persistence. Patience because of the different way people learn, it may take a while to get to the destination, and persistence because I will never stop until I get to the goal.

Hope: Aiden give me hope with every little accomplishment, be it however small. I see an intelligent  funny, and a little sarcastic little boy, wide eyed and ready for the world. I hope every day, no, I am sure he will make his mark on it.

Love: I have never loved someone so much. My heart breaks when he is frustrated or unhappy.
Aiden has the ability to know when you are feeling down. this is something that is not typical in most people on the spectrum. yesterday, during the preparations for the holiday I was feeling a little down, missing my parents. Aiden sat down next to me, reached over and held my hand. When I looked over at him he smiled, as if to say it's OK dad, I'm here, there is nothing to be sad about. I reached over a gave him a hug and felt so much better.

Aiden's story

What lead to Aiden's diagnosis:

Aiden was not meeting specific milestones, most notably speech. At 18 months he was not talking. He was lining up and spinning his toys and not playing with them in context He was also hand flapping. I knew from a friend that has an autistic son, that Aiden was autistic. The signs and symptoms were there. We made an appointment with A developmental pediatrician at CHOP and they confirmed our fears. We got Aiden enrolled in early intervention through the Montgomery County Intermediate Unit. There he met his first therapist, his Occupational therapist. We saw Aiden make his first real connection with someone outside the family. They definitely had a special bond!

What's special About Aiden:

Aiden is the most social autistic child anyone has ever met. He is also known as the puzzle master. He can also work a touch pad devise (ipad, phone etc) better than most adults. He loves the Wonder Pets, and his stuffed Eeyore. Aiden is non verbal, but he definitely communicates. He uses pecs, sign language and a few words. Aiden also loves animals, he receives hipotherapy (horse riding therapy) and loves the horses. He loves fish and anything to do with water. He also loves our dogs (albeit a little to much sometimes). Aiden also has a very special bond with his sister.

How has Autism affected our lives?:

I think of Aiden not as an autistic child, but as my son. A normal (what ever that is) 5 year old. He is the light of my life and I relish in his accomplishments and support his weaknesses.

My wife has become a master at navigating frustrations the health insurance system. She has sought out therapists and treatments that have advanced Aiden's life. She is my hero!

I started this project this year after of hearing of another on the west coast. Because of work I'm am not able to attend a lot of the meetings with the insurance companies and meetings with his therapists. I needed to do something to help people through this.