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Friday, October 26, 2012

Intensive, Biomedical Changes, and the UPS and downs of recovering from autism!!

Well, well, well here I am again on a Friday night blogging :)  I have lots of updates and lots of ideas running through my head.  I am going to come clean and confess why I have not blogged about Hayden and the program recently.

The truth is the month of September and the first part of October proved to be a challenge for us.  We have had several changes with our team and Hayden has been getting around 30 hours a week of therapy.  Starting next week we ramp back up to 60 hours a week.  These changes are not bad just different and was a bit of an adjustment to juggle and plug everyone into the right hours to work with Hayden.  One of our team members is actually starting a Son-Rise Program for her grandson.  I am super excited and happy for her and her grandson.

The biggest challenge has been the change with Hayden.  The months of July and August we seen  HUGE, MIND blowing progress.  He hardly isimed (repetitive behavior), he became super social, he hardly tantrumed, and his language and eye contact exploded.  In September I noticed Hayden starting to isim more and then he started giving less eye contact.  I was slightly concerned but felt the most ease I have ever felt when Hayden has regressed.  The second week of October we traveled to Son-Rise for Hayden's intensive.  While we were there Hayden isimed 90% of the time in the playroom and was only speaking in 1-2 word phrases.  I am not going to lie that was hard for me to swallow.

I actually became very upset when the Son-Rise teacher presented the developmental model they plotted Hayden on early in the week.  I was absolutely CRUSHED.........all the handwork we have done......all the progress Hayden has made and the teacher told me they were putting Hayden at a stage one for eye contact.   Then I got pissed.......I mean how can "they" evaluate my son fairly at a strange place, and him working with complete strangers.

I am actually chuckling at myself as I type this.  What I came to realize and understand is that Hayden is doing his best, I am doing my best, Brandon is doing his best, and our team is doing their best.  The Son-Rise Intensive Team evaluating Hayden to be at a stage one for eye contact does not change how amazing Hayden is nor does that "number" represent all our handwork and effort.

What that "number" is, is where they evaluated him at and what they are basing his goals for the week of off.  It does not, nor did it change anything besides the fact that we have really amped up our game for motivating Hayden to give eye contact.

Our Intensive well was INTENSE!!  I have NEVER wanted to run away from something so much in my life.  The biggest change in Hayden's program has been to stop requesting so much from him.  We have pretty much stopped requesting (except when appropriate) at this point and have been working hard on celebrating, celebrating, celebrating, and more celebration of Hayden :)   We are also giving a lot more to him.  Hayden has been super responsive to this and we are getting a much deeper connection from him.

The super biggest change since we have been home has been Brandon and I's relationship.  We had become just room mates in passing over the last year.  Brandon works second shift and has his rentals to deal with during the day.  I work 12 hour shifts on the weekend.  When I am home during the week I am running Hayden's Son-Rise Program, making all our meals from scratch, managing all of Hayden's biomedical needs, the housework, and taking care of my sweet little girl.  I am not complaint about my responsibilities at all.....just saying what I do :)  The problem is that Brandon and I pretty much have zero time together.

We have completely put our marriage on the back burner.   Ahh.....so NOT the thing to do.  We communicated through text messaging and Facebook.  We have been working hard at correcting this and have actually started communicating face to face.  I discovered why I judge Brandon so much.  It is because I judge myself.

The truth is Brandon is an amazing husband, fabulous father, and an all around great guy.  He is doing his best each and every day.  I love his even temperedness, I love his sense of humor, I love his laugh, I love how hard he works for our family, and I love watching him with our children.  Brandon has grown so much in such a short period of time.

One of my biggest issues with Brandon prior to our Intensive was his lack of help in the mornings.  I use to get so pissed at him!!  Mornings were hectic for us.  Hayden use to wake me up demanding I make his fresh pressed juice, before the juice was done, he was barking at me to make him a yogurt smoothie, then he wanted his breakfast, and paints, and toys, and who knows what else he would demand at me.  Then somewhere in there Ruby would be waking up and wanting things as well.  It was rough because I let it be rough!!!

It took a few days at our Intensive for me to realize the Brandon is doing his best and that I CAN do all the things in the morning with out him.  I also got some great ideas on how to work with Hayden on his demanding behavior and how I can be at ease in the mornings.

I must say it has worked like a charm!!  I no longer dread the morning.  Hayden no longer barks orders at me.  I actually take my time making the things Hayden wants in the morning or I don't even make them at all.  If he has to wait......he has to wait.  It is his choice to be happy about it.  It didn't even take a full week to adapt to our new morning routine.  Mornings have been peaceful for us.  This morning Rub was upset about something.  Hayden actually said to her, "You can choose to be happy Ruby."   Ruby did not appreciate Hayden's statement and choose to be un-happy.  I celebrated Hayden big time :)

So why did I not want to share Hayden regressing (which I totally don't view regressing as a bad thing)??  Mainly because I was working hard at being with peace with it myself.  I was confused on what to do and how to handle it.  I didn't want anyone feeling bad for us or loosing their faith in Hayden (which I know these are all silly beliefs now).

Hayden is pretty steadily getting back to where he was in August.  He has actually become quite social outside of the playroom.  He has been playing with Ruby for hours at a time.  Having typical sibling arguments, constructing a ton of original sentences, and making a ton of statements.  Tantruming has been less and less :)  Woot....WOoT!!!

I have been working my way back on the biomedical trail since July.  Hayden has not been on any new supplements since December.  Last week I started a different Fermented Cod Liver Oil for him.  This week I started giving him GABA.  New week I am going to increase the dose of GABA and hopefully the week after that I am going to start him on grape seed oil.  We should get his methylation pathway lab results back in about 9 weeks.



Friday, October 19, 2012

Pieces of Us: Hayden Draws a Monster......GAME Alert :)

Pieces of Us: Hayden Draws a Monster......GAME Alert :): I decided to make a game out of one of Hayden's favorite books.  Jeremy Draws a Monster by Peter McCarty is an excellent book.  I borrowed t...

Hayden Draws a Monster......GAME Alert :)

I decided to make a game out of one of Hayden's favorite books.  Jeremy Draws a Monster by Peter McCarty is an excellent book.  I borrowed this book from the library because it looked like a cute story.   Little did I know that it related to Hayden's life.  The book is about a little boy that looks out the window at the other children playing soccer outside.  Jeremy never goes outside to play with the kids he just watches them.  One day Jeremy decides to draw a monster.  He draws the monster and he demands that Jeremy draw him all sorts of things to feed him and entertain him.  The monster decides it is to time to leave and leaves.  He comes back that night and sleeps in Jeremy's bed. Jeremy decides to draw a suitcase, bus ticket, and a bus for the monster because he has had enough of the monster.  The next day he sends to monster on his way and goes out to play with the children.

I relate this book to Hayden because of his autism he use to be only in his own world.  He never played with other children until recently.  Hayden's autism is the "monster"  it has taken chasing the toxins, pathogenic bacteria, heavy metals, yeast, and parasites out of his body, and the proper therapy (Son-Rise) to show him how amazing the world is.

Hayden has not seen the book yet.  I will present it to him Monday morning during our play session :)

The hole in the page is for me to stick my face in while we read and act out the story :)

I printed pictures of all Hayden's first cousins to be the kids

All the things the monster demands are on velcro and will be attached to the playroom while prior to reading the book to motivate the use of language and gesturers



Hayden playing soccer with all his cousins.

Super excited to play this activity with my little man :)