Pieces of Us: Today was a good day :)

Pieces of Us: Today was a good day :): I must say that this was over all a rough week for us. I was in a crapy mood and have felt so run down for the past week. Hayden has been ...

Today was a good day :)

I must say that this was over all a rough week for us.  I was in a crapy mood and have felt so run down for the past week.  Hayden has been tantruming and I have not been my normal tolerant, patient self with him.  I feel like we have fed off of each others issues all week.

I must say that as I type this I am breathing deep and letting it all go.  Today is a new day after all and I am not perfect nor do I want to be :)  Some pretty amazing things happened for us this week too.

We had Hayden's first Son-Rise team meeting.  I can not even express how great full and excited for all the people that have stepped forward and are going to work with Hayden.  I feel that we are all on the same page and believe in Hayden's recovery.  I am thrilled to say that Hayden has 33 hours scheduled in the playroom next week!!!!  Yahoo, Yippie, Yahoo!!!!!!  Can you feel my excitement?  I think we are going to meet my goal of 8-12 hours of therapy a day for Hayden in the next six months.  Now to get some more volunteers!

I posted 15 volunteer wanted signs around town this week, placed an ad on the local cable station, in contact with Easter Seals, and the local newspaper is going to do an article on us.  I still need to contact the local colleges.

Hayden had a good check up at the Carmel Clinic.  Well his behavior there was horrible but the lab results were good.  His lead levels dropped from 9.1 to 5.9, and arsenic went from 33 down to 19.  He also grew another 2 inches :)  That is 4 inches in 10 weeks!! Hayden would not cooperate for a accurate weight. I am proud to say that we have finally outgrown 2T's and is wearing 4T's in a lot of things.

The majority of the week Hayden has slept 9-10 hours a night.  I LOVE, LOVE, LOVE this :)

Today was a nice ending to a crummy mood of a week.  Hayden woke up at 4:30 this morning.  For some odd reason I woke up in a good mood even though it was 4:30 am.  I got us around and we got in hbot.  Something truly amazing happened in Hayden's hyperbaric chamber today!!  We were laying there side by side reading a book together.  When I finished the book I hugged Hayden and he hugged me back :)  He squeezed me with all his might.  It was the most amazing hug a Mom can receive.  A calmness ran through me and I felt as though Hayden truly connected to me and was embracing my presence.

There was a time when Hayden would scream and tense up when I touched him.  We have slowly, but surely gotten to the point we are today.  I look forward to many more hugs from Hayden.

After we got out of hbot we made waffles together and waited for Daddy and Ruby to get up to have breakfast together.  We talked about going to the zoo and I congratulated Hayden many times for all the eye contact he was giving me.

As we pulled into the zoo parking lot I asked the kids where we were.  Hayden said,"At the zoo."  I then asked the kids what we were going to see and Hayden said, "Bill the Lion."  Yep, that was a full loop conversation and I almost wrecked the truck into some handicapped elderly people taking in the "conversation" I just had with Hayden.

We were at the zoo all day today and had a great time.  We pretend to swim like sharks, fly like bats, and hop like frogs.  I must say I got some pretty strange looks when I was hopping around and sticking my tongue out like a frog with the kids ;)  We rode the log ride, carousel, and train.  The kids were both so excited to ride the rides.  Hayden use to freak out at the thought of it.  Then came the bird area.....my least favorite.

I bird seriously flew at me and brushed my shoulder.  I am terrified of birds and I screamed, ran, and left my poor kids in the dust.  Once I calmed down and located my kids a bird flew over us and it pooped on the ground right in front of us.  Ruby then starts screaming it pooped 500 times while grabbing her crotch.     I think Hayden wanted to pretend like he didn't know us (I don't blame him).  We exited the bird area pretty quickly after that.

We came home had dinner and then I filled the bath tub with a ton of bubbles.  I decided that we would all take a bubble bath together.  I must say it was a lot of fun.  There were bubbles everywhere and I think the neighbors could hear us laughing and carrying on.

Before I knew it, it was bedtime and the kids both were happy to go to bed tonight.  I must say today was pretty amazing :)

My sweet Ruby.....when did she get so grown up?

 Hayden giving me great eye contact and ribbiting like a frog.

Ruby LOVES hippos, even ones that look like trashcans :)

 Ruby loved the boots

 Hayden was getting tired of waiting on Ruby trying on the boots.

Ruby was telling me where it's nose was.  I asked her where his belly was and she looked at where the belly is at and gave me a dirty look.

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!!!!