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Wednesday, June 1, 2011

Autism One and Beyond

WoW!!!  Autism One in Chicago was amazing.  Brandon and I had such a great time and learned a lot.  We met a lot of amazing parents, recovered kids, recovered adults, and parents that refuse to give up on their children.  I must say that there was so much inspiration and pure positive energy at the conference.  It was awesome to be surrounded by people that are walking the same path we are.  We will with out a doubt be going back.

I have to give a huge shout out to my parents and Aunt Sandie for making it possible!!!  They took on the challenge of caring for the kids while we were away for four whole days and nights.  I couldn't have asked for Hayden and Ruby to be in better hands.  I know fun was had by all.  When we picked up Hayden and Ruby my parents looked like they had been beaten and desperate need of a good nights sleep.  I can't say thank you enough.  A break was just what Brandon and I needed!!!

I found the therapy solution that I was looking for!!!  I will be traveling to Massachusetts the end of August for 5 days of intense training in the Son-Rise program (  The Son-Rise program is based on love and respect.  I will be the main person providing Hayden's therapy and will teach others how to work with him.  I am so excited......I know this is the answer to my prayers.  We can incorporate therapy into every part of our day. 

Therapy for Hayden has been frustrating since he aged out of First Steps at the age of three.  We finally found a speech therapist that we love, but occupational therapy has proved to be a real challenge.  People just don't get Hayden or listen to me.  I am pretty sure that I can be intimidating.  I try hard to be respectful when voicing my opinion or offering suggestions, but sometimes I feel like I am talking to a wall!!!!  I have done my research and I work very hard with my son, freaking LISTEN to me!!!  It is beyond frustrating when people fell the need to listen out all the special training they have received / done......NEWS FLASH....if you can't apply it then it don't mean shit!!!  Okay...that's my rant and I am done.  We have been through four occupational therapists now and only liked one.

We are also going to get a second opinion to make sure that we are doing everything we can for Hayden while he is still young and has the best chance at recovery.  One of the doctors that we are considering is in New York City and has two autistic children himself, and the other is GI specialist that has clinics in Florida and New York City.  We are leaning towards the GI specialist because we continue to struggle with Hayden's gut.

We are also going to follow a different protocol for Hayden's hyperbaric oxygen therapy treatments.  We are going to do 1.5 hours daily for 30 days and then take 30 days off.  We currently are doing an hour a day.

The next thing we are going to add to Hayden's treatment plan is modulated music.  Modulated music is music that is in varying frequencies and tones that he will listen to with headphones. I am not sure how and when this will all go done but this is something that we will do daily at home.

I have also realized how important it is to take time for myself!!!!!  It truly makes me a better Mom and I need to learn to ask for help and accept help :)

Hayden having autism has been a true gift from God!!! I know that may sound odd but man it has opened my eyes and showed my how to live and love life.  Hayden is a true inspiration and I am so lucky to be his Mom.

***As a side note I am selling all of Brandon's unnecessary body parts and organs to fund Hayden's autism treatments.  I also have no problem pimping him out for services.  Contact me if you are interested ;) ***