Is it time to move on??

I can't believe that it is the end of October already!!  Time is seriously flying by.  Hayden's therapy room is finished and he is getting about 30 weeks of therapy a week.  We still need more volunteers!!!  We need volunteers to work with Hayden or watch Ruby so we can work with Hayden.  If you know anyone send them our way.

Hayden had a check up at his specialist in Carmel this week.  Hayden weighs 32 lbs and is 39 inches tall. Overall he had a good check up.  We are fading out some of his supplements(thank goodness).  Hayden will start seeing the doctor every 3 months instead of every 5 weeks.  He got his lab results back and his gut remains a yeasty mess.  GRRR!!!!  We have been working so hard for the past two years to get rid of the yeast and it just won't let go of my little man.

The whole yeast thing has me.  I am thinking about and researching different options to do and try.  I am leaning towards a diet change.  We are already gluten, almond and dairy free, limit soy, limit sugar, no artificial colors, and an all organic diet.  The two different diets that I am looking at is the SCD (specific carbohydrate diet and the GAPS diet.  These diets eliminate food that feed yeast.  The problem is that they are a challenge to do.  I once thought that it was going to be impossible to get Hayden off dairy, but we did and he helped him so much.  I am leaning towards the SCD diet because it does not involve going to the butcher and getting bones from animal cut in half to make stock with and eating fermented vegetables is not a requirement of the SCD.  However the GAPS diet is amazing for gut healing.  I wish someone could just tell me what to do!!!

I am also considering taking Hayden to a different specialist for a second opinion.  I kind of feel like our Dr in Carmel has gotten Hayden as far as she can.  She is wonderful and I have a ton of respect for her, after all she gave me my son back :)  There is just something telling me that it is time to move on.  This is not going to be an easy decision.  The one doctor that I am considering seeing has an office in Texas and one in New York $$$$$$!!!

I do know this though.....when I switch Hayden's diet I am going on that diet with him.  NO more cheating for me!!!  If it is good for him it is good for me and I need to be 100% supportive and not cheat behind his back.

I think I have also figured out Hayden's strange bouts of SUPER-DE-DUPER hyperactivity no-sleeping cycles.  Back in May after Brandon and I went the Autism One we switched how we were doing Hayden's hyperbaric oxygen therapy treatments.  We started using a protocol that you do 1.5 hours a day for 30 days and then take 30 days off from hbot.  We also started Hayden's heavy metal detox (chelation) at this time.  I thought his nightmare of a behavior was from detox and left it at that.  Well he have been off chelation for almost 2 months now.  Hayden had a round of his freakish hyperactivity no-sleeping period earlier this month.  Well this month is a non-hbot month.  I started thinking about why, what are we doing differently, did he eat something he was not suppose to??

Ta-Dah.....light bulb went off in my mind....it's the hbot!!  Sure enough two sessions in the hbot, Hayden was sleeping better and the freakish hyperactivity was going away.  Huge sigh of relief.  So we are now going to do one hour of hbot every other day.

I wish I would have video taped his freakish hyperactivity.   I mean constant movement with several movements in one and a hot stimming mess.  It was HORRIBLE!!!  He would be up at 3am and ready to play and not take no for an answer.  It is amazing that Brandon and I survived this behavior.  Just thinking about it makes me want to hide in a corner and rock back and forth.

We have a teacher from the Son-Rise program coming the first week of December to working with Hayden, answer our questions, and give us some feedback.  I am very excited about this.  Brandon and I have also decided that I am going back to the Son-Rise program in April for another weeks worth of training.  I can't wait to go back.  It is such an amazing place.  I wish we could just pack up and move there so I could become a certified Son-Rise teacher and help more families.  Maybe one day!!

Hayden has been making some great strides with the Son-Rise program.  He is communicating so much more.  He is actually telling me  his emotions.  I ask him what is wrong and he tells me that he is sad or angry.  He has even told me he is happy :)  In the past week we were snuggling and he sang the whole entire song that I made up for him as a baby.  WoW...that sure brought out the water works!!  Even Brandon had a tear in his eye.  His eye contact is also greatly improving.

I am beyond proud of my little man and all of his hard work.  It is pretty amazing that we our on our way to recovery.  I read a snip it of his evaluation to public school system did when he turned three.  It said that Hayden severely autistic.  It is always good to remind myself of where we were and to think of where we are now.  Hayden is no where near the severe side of autism.

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 (http://www.autismtreatmentcenter.org/).  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 ;) ***