The Letter I wrote Hayden in class today

My Dear Sweet Hayden,

I want you to know what an amazing gift you are.  You bring so much joy and excitement to my life.  You have taught me more about myself and life in the four years you have been a part of me that I have learned in my entire life.

You have taught me patience.  You have taught me to celebrate and enjoy the little things that life has to offer.  YOu have taught me to accept myself for who I am and to love myself.

I embrace every moment that we have together good or bad.  I hold you tight and squeeze laughter out of you.  This has to be on of favorite things in life.  In that moment it is just us smiling, laughing, and enjoy the simple joy of being together.

You having autism has never and will never be viewed as a negative in my eyes.  You be you has transformed our lives and made us a happier, stronger family.

I love you for you.  I accept you for you.  I never want to change you and make you someone you are not. I don't want a cookie cutter child.

I love the way you smile.  I love the way to skip and jump.  I love watching you swim and splash in delight.  I love the pictures that you paint me.  I always laugh and enjoy your randomness.  Even when you run into the middle of the street and take a poop.   Ahhh, how you have provided me with a great sense of humor.

I love what a good big brother you are to Ruby.  It is truly amazing to watch you interact with one another. You love Ruby with all your heart.  The two of you connect on an amazing level.  I see the light in your eye when you say her name with excitement in the mornings.  One of the first things you do in the morning  is run in her room, turn her lights on and shout, "Ruby" with delight.

You have touched so many peoples life.  You force as all to look outside the box and see the world with new eyes.  I have a new appreciation for you blowing raspberries on my belly and jiggling the jiggly skin on my stomach (by the way you made it that way).  I now view you playing with my stomach as a way to interact with you and be one with you.

I wish for you a life full of happiness and love.  That you continue to be the sweet, loving, happy little boy that you are.  There endless possibilities to all that you can achieve in this world.  I love you will all that I can love you with and more.

xoxo,
Mommy

We NEED Your Help!!!

We NEED Your Help!!!

Cha, Cha, Cha, Changes!!!!

I am currently in Massachusetts at the Autism Treatment Center of America.  I am receiving training on the Son-Rise program.  I have a lot of people as me what the Son-Rise program is.  Well the Son-Rise program was developed by two loving parents in the late 1970's to help their autistic son.  The therapy is loving and respectful to the child that has meaning and purpose that is NOT academically based.  The focus is on communication and social skills.  You join your child is his world and then run with it.  For instance Hayden likes to shake his cars by his ear and look at the car with his peripheral vision.  I then get a car and do the same motion to engage him. Then you work with him from there.  I don't have the energy to go into every detail at this moment :)

We are in the process of converting our sun room into a therapy room for Hayden.  The therapy room will be a non-distracting environment so it is easy for Hayden to want to focus on who is working with him.  It will have a mirror, therapy ball, trampoline, and a table in chairs.  There will be shelves high up on the walls that will contain work and snacks that Hayden is interested in.  The purpose of them being out of Hayden's reach is so that he has to communicate with us to get what he wants.

The plan is to be in the therapy room as much as possible.  I would like for Hayden to be in the therapy room for at least 8 hours a day and when possible 12 hours a day.  That means we are going to need help!!!  I already have some amazing people that have stepped up and offered to help with Hayden or watch Ruby so we can work with Hayden.  We need more volunteers!!!!  If yourself or know of someone that would be interested in working with Hayden or watching Ruby please let me know ASAP!!  Unfortunately we can not afford to pay anyone at this time.

The requirements are to have an open mind, be a positive person, and have energy.  You also can not have any cigarette smoke on you (Hayden is allergic).  I will teach you how to provide therapy to Hayden and you truly need to stick with what I teach you for it to work.  There will be an observation window into the therapy room so that I can observe and others can observe me to provide feedback.  You can volunteer for an hour a week or several hours a week.  This person can be 10 years of age to 100 years of age.  

If I am hopeful that we can start an 80 hour week therapy program for Hayden!!!  I am going to be taking Hayden out of school.....wow I said it.  I firmly believe that this is what needs to be done at this time.  We need to use every opportunity of the day to work with Hayden.  We can't do that when we are wasting 2 hours driving to school and 3 hours at school.

I am making a commitment to my son!!!  I know that recovery from autism is possible for him and I am not going to give up.  We CAN do this!!!!  

Happy 4th Birthday Hayden James :)

WoW!!!  Hayden's 3rd year of life flew by.  We had a lot of great times and some not so great times.  All in all it has been a pretty amazing year for Hayden.  Every year around Hayden's birthday I write him a letter to reflect back on the year and put it in his baby book.  So here it goes!!

July 13, 2011

Dear Hayden,

I can't believe that it is your fourth birthday already.  What an amazing year you have had with lots of big changes.  I look at you and feel incredibly blessed to have you as a son.  You bring our family so much joy.  You continue to motivate us to become better people.  You force us to think outside the box and look at the world in a totally different way.  You also out smart me almost every day :)  Your creativity is truly remarkable!!

You currently love Thomas The Train, Disney Cars, and Toy Story.  Your favorite thing to do is to swim in the pool at Grammie and PaPa's house, play outside, play with your cars and trains, and anything else that includes running, jumping, and flying through the air.  You enjoy singing songs and dancing in the kitchen with Mommy and Ruby. Your gross motor skills are unbelievable.

Right now you are learning to swim and ride your bike.  You can count to 30, say and recognize all the alphabets, know all shapes, and colors.  You are learning how to read sight words.  You are completely toilet day and night.

You continue to grow stronger and healthier each day.  You weigh 32 lbs and are 38 inches tall.  You continue to broaden your diet with the exception of vegetables.  You still only eat green beans.  This makes Ruby happy because she loves veggies and has no problem eating your portion!!  Your favorite food is cantaloupe.

This year you started going to a Montessori School and overall had a great year. It was pretty amazing how quickly you adjusted from being away from Daddy and I. 

Your vocabulary is now at a normal 4 year old level!!!  I am so proud of you :)  We still have a ways to go with how you socially use your words, but steady progress is being made every day.

 You use both right hand and left hand for all things you do:)  I think this is a sign that you are a genius!

Health wise is still a struggle.  You had to be hospitalized twice this spring for asthma and RSV.  Your gut is getting healthier and healthier.  We are currently working on getting the heavy metals out of your body.  This has been hard on all of us.  It makes you hyper, irritable, and you don't sleep well.  I am hopeful that we are getting close to the end of chelation!!!

You are doing an 1.5 hours of hyperbaric oxygen therapy daily for 30 days then off for 30 days.  You also continue to take 26 different supplements a day.  You are on a strict organic diet still.  You don't eat gluten ,dairy, pork, lemon, strawberry, almonds, food coloring, and mustard.  I think I have the hang of it and have found yummy replacement food.


You have become very close to Ruby.  The first thing you do in the morning is go check on Ruby.  You play well together as long as she does not get your cars.  You also fight over Jessie from Toy Story.  Daddy says that the two of you wrestle, but I have yet to witness it.  You like to read Ruby books and work on arts and craft projects together.  You are a great big brother and Ruby adores you.

You are truly an incredible person Hayden!!  I will always be your number one fan :)

XoXo,

Mommy

Hayden and Gaige at the zoo.  Gaige is one of your best buddies :)

Your first day of Montessori School August 2010

Making Pumpkin muffins with out underwear ;) November 2010

The sea lions are still your favorite animals at the zoo :)

Happy 4th Birthday Hayden James!!!!

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 ;) ***

Heavy Metal Detox, Yeast, Allergies, and School

The last six weeks have been a roller coaster of events and emotions.

We started Hayden's heavy metal detoxification using dmsa.  Hayden takes dmsa four times a day for three days, then has 11 days off dmsa and we repeat the cycle.  We are doing four cycles then re-evaluating lab work of heavy metals and check his liver and kidney function.  We have completed three cycles so far.  One more cycle and then a break!

I am glad to be finally getting the heavy metals out of his body but boy has it been rough!!!  Hayden has been "off" for about six weeks now and it scares the crap out of.  He has NEVER shown regression for more than a day or so and we are now six weeks in.  I have been told repeatedly that regression is normal and to hang on because big changes are about to happen. 

So what kind of regression am I seeing in Hayden?  He is stimming again :(  We got to the point were Hayden didn't stim anymore.  We are seeing lots of hand flapping, spinning, and his shrieking is back.  He is laughing at inappropriate times / things.  It hurts to see him like this.  I know that there is something going on his little body that is effecting him neurologically causing him to stim and I want it GONE!!!

He was also not sleeping well for about 4.5 weeks.  Hayden was waking up 3-4 times a night and up for the day at 4-5am.  He also stopped napping. Hayden not sleeping totally worn me down and kicked my butt.  I am very happy to report that he is back to sleeping 10 hours at night and taking a one hour nap during the day.  Thank goodness.........I seriously thought I was going to loose my mind.

Hayden is also having more tantrums.  These are not your typical three year old tantrums!!  These are tantrums that can last for an hour.  Hayden loses all ability to be rational or "reached" during these tantrums.  I feel so helpless when he is like this.  It breaks my heart to see the rage in his eyes, the spitting, the kicking, the throwing of objects or himself. 

All of the negatives and regression we have seen some positive growth!!  Hayden's social skills are improving and he has a little girlfriend at school :)  They sit by one another, Hayden likes to play with her hair, they have even been spotted holding hands!!!  I can't even put into words how truly amazing this is.  There was a time when no one, I mean NO ONE could even interact with Hayden with out him having a complete and total melt down and now he has a "girlfriend".  Did I mention that she is the only girl in Hayden's class?  I got the chance to talk with her parents and they said that she talks about Hayden all the time!!  One of my biggest concerns is that other children will not accept Hayden and that they will treat him poorly.

It is also amazing to watch Hayden interact with my parents.  He gets so excited to see them :)  He is comfortable sitting in their laps, hugging them, and kissing them.  There was a time this was painful for Hayden and now he totally embraces it.

We have been enjoying the zoo!!  It is so much fun to see how excited Ruby and Hayden get over the animals and to hear them tell me what they are and make animals noises.  Hayden also enjoys being around other people at the zoo and running and playing with the children.  This is pretty exciting stuff for us......every day things that people take for granted!!

So why the change...........I am not 100% sure!  At first I thought it was because Hayden accidentally ate some gluten.  A week into the regression I figured that was not it.  Could it be the DMSA....maybe?  Could it be seasonal allergies that have triggered a histamine release in his body....maybe?  Could it be a yeast kick up in his body?

I think its the yeast!  His behaviors are typical of yeast "flare" up.  Hayden has a doctors appointment on Tuesday and we get some labs results so I should know more than.

I am just hanging on and trying hard to stay cool, calm, and collective during this rough patch.

I just want my little man back and I think that we are slowly but surely getting there!! 

We also made a decision on school next year.  Hayden and Ruby will be attending Peace Montessori in New Haven.  I am not looking forward to the drive (50 minutes one way) but it is the best place for Hayden at this time.  It is our hope that Hayden will be able to go back to Oak Farm in a year or two.