Follow by Email

Saturday, May 18, 2013

A lot has happened in two years.......

What a whirlwind of events the past seven days have been!!  I came to the conclusion that Hayden is ready for school and would like him to start in the fall.  WOW.....this is a GIGANTIC step for all of us!!

Last week I took Ruby for a interview at the local Montessori school and I also had to do an in class observation.  As I was observing the flow of the classroom I was thinking about how Hayden and Ruby would be in this environment.  I felt that Ruby would do exceptionally well and felt so super excited that she would be starting this journey.  My sweet and sassy princess is ready for school and what a beautiful enriching environment this will be for her I thought to myself.  I had very different feelings thinking of Hayden.

The classroom had a busy buzz to it.  There was lots of movement and lots of children (12) moving around and doing their work.  In no means did I feel this was a bad thing I just felt that this would be highly overwhelming for my son with autism.  What I failed to remember in that moment is that Hayden no longer has sensory issues.  Noises, movements, stuff, and smells no longer overstimulate him.

I talked with Brandon about it and decided to call a few other schools and see what they had available. In the past 3 years I have visited 15 different schools in a 50 mile radius.  Ultimately Oak Farm Montessori is where I wanted Hayden to go to school at.  If he was not ready to attend this school now my hope was that in the future he will be ready.  When I talked with Brandon further about it we decided that we really didn't know how Hayden will do until we try.  WOW.......so I set up a classroom visit for Hayden.

I must admit I was having some anxiety about leaving Hayden in a new setting with new people.  I have not left Hayden in a new setting in almost 2 years now.  I really don't leave Hayden with anyone except his Daddy, Grammie, Grandma, and cousin Kelsie.  Those times I do leave him are few and far between.  Maybe once every 6 months or so.  For those of you that don't know me I am a CONTROL FREAK, especially when it comes to Hayden.  So leaving Hayden in a classroom environment was a HUGE challenge for me.

The first day Hayden went for his classroom visit.  I prepared him by telling him what was going to take place.  We were first going to the lobby to wait for instructions.  We then were going to walk to his classroom at 9am together.  I explained that I would be joining him in the classroom until 9:30am and then I would have to leave to do my work while he stayed and did his work.  I then explained that I would be back at 10:30 to pick him up.  Hayden was adamant that he did not want to go to school.

I decided that if Hayden was showing signs of stress at anytime that we would end the site visit.  Something magical happened as we pulled into the campus of school.  Hayden had a big smile on his face and started signing a song he use to sing in class when attended this school two years ago.  I must admit this was a HUGE sigh of relief on my part!!  I then started tearing up.  It was a bit of a challenge for me not to go into a full on tears of joy sob fest.

From that point on Hayden was cool as a cucumber.  He did not cry once, he did not tantrum, and he did not exhibit any signs of being stressed.  I walked him to his classroom.  He went in a quickly adjusted to the surroundings.  I sat quietly and observed him for 30 minutes.  I bet you all want to know what I observed.............

Well observed a happy, typical child adjusting well to a new environment.  He followed directions well from the teacher, he smiled at the other children, he observed the other children, he got work out, he put  work away, and he told the teacher what he wanted to do.  I was SHOCKED and in tears!!  It then was time for me to leave.  I simply told Hayden I was leaving and pointed to the clock and told him I would be back at 10:30 to pick him up.  I heard him say Mommy but that was it.  No scream, no chasing after me, no death grip hold on me.  Hayden was fine :)

When I went to pick him up the teacher said, "Hayden followed directions well, was happy, he was calm, interacted with other children well, and only asked for you a couple times."  WOW.....REALLY????

I told Hayden how proud I was of him for doing his best.  He had a look on his face like "Yep, I rock and totally did this on my own."

When I took Hayden back for the second day to a different classroom (the one he will be in next year) the plan was for me to just drop Hayden off at the door and leave.  WHAT???  Yeah, I did not see this going well.  Guess what.........Hayden walked right in and I left.  No crying, no death grip on me......he just walked in like he owned the place.  I stood at the door in shock for a few seconds, talked with his teacher a bit, and then walked away.

I was able to go and observe through the observation window.  Hayden asked for me a few times but over all did great.  His teacher took him by the hand a few times to show him around and Hayden was completely cool with that.  I then picked up Hayden and it was like he had been going to school all his life.

Hayden's previous teachers came to peek in on him.  When I spoke with them they had tears in their eyes and were so happy for us :)

Hard to believe that two years ago Hayden was not accepted at this school because it was not a good fit for him.  Hayden being turned away was one of the best things to ever happen to us.  It is what pushed me to look for something else.  That is when I found Son-Rise.

REALLY........REALLY is this happening??????  Did my severely autistic son just go to school in a typical Montessori classroom on his own with no issues????? NO.....you know why NO........because I don't have a severely autistic son anymore.  I don't even have an autistic son anymore.  What I have is an amazing little boy that has recovered from autism!!  Do we still have challenges.....YES!  Is Hayden going to recover from those challenges......YES!

So here is to a new adventure for our family........Hayden and Ruby will both be starting school in the fall :)  I am going to do my best to NOT stalk them.

GOOD BYE AUTISM!!!!!!


Sunday, May 5, 2013

F~R~E~E~D~O~M

Freedom.....Freedom........Freedom.......Freedom  Are you hearing that song from the annoying commercial playing singing the words freedom????  I know I sure do.  That is totally and completely what I am feeling FREEDOM......FREEDOM that I have not allowed myself to feel or have since Hayden was diagnosed with severe autism three years ago.

I feel free to walk my own path and define our lives.  It feels so liberating to empower myself to live life the way I want and make time for the activities I want to do with my family.

We have been running a totally, completely, life changing, amazing therapy program out of our home for our son Hayden for the past 22 months.   I seriously love this program and highly recommend it to anyone that has a special needs child.

The least amount of hours Hayden has spent in therapy a week is 20 and the peak amount of hours has been 65 hours a week.  I have done anywhere from 10-25 hours a week of the one-to-one therapy with Hayden myself.  I also apply all the principles of the therapy to our lives when Hayden is not in his therapy room as well.  I also am the team leader of his program.  What does being the team leader look like.......I coordinate the therapy schedule, for each person that works with Hayden I observe at least 15 minutes of the session, provide 15-20 minutes of feedback after each session, I provide support to our team members, coordinate and run the 2 hour monthly team meeting, complete monthly evaluations based on my observations and session evaluation forms that team members fill out, organize the session evaluation forms, define monthly goals, make activities to do in the playroom, clean the playroom, and rotate games in and out of the playroom shelf.  It's a full time job that I seriously love.  I love being the leader of Hayden's team.  I love working with Hayden.  I truly, deeply, LOVE....LOVE.....LOVE being in the playroom with him.  It is the one point in my day that nothing else matters.  It's just me and my little man having a blast.  If you want to see me playing with my little man check out this YouTube video:Brandi and Hayden playing in Son-Rise


The thing is I am tired and overwhelmed the majority of days.  I also work 12.5 hour shifts on Saturday and Sunday, prepare all of our food from scratch (no processed foods at all).  I coordinate Hayden's supplement schedule and administer his supplements which is often something every 1/2 hour to an hour of dosing.  I care for our home, spend time with my princess, research autism, and provide support to other autism families.

It is often 6pm and I am feeling light headed and have to really think about if I ate or not that day.  Often times the answer is no.  All I have had for the day nutrient wise is a glass of fresh juice in the morning and a cup of coffee.  Seriously....I am too busy to eat.  I am too busy to sit down and just breath.  WHAT THE HELL!!!!!

I often find myself getting frustrated at my husband because he is not helping me enough.  Brandon helps, he does his best, and as he often says "I do more than most".  He does, he truly does......it's just not enough.  Wow, I am in tears as I type and think about this.  In all honesty I don't think if we hired someone 40 hours a week to be my personal assistant would be enough help.  Brandon could not possibly help me enough...........I have set ourselves up to fail.

Our schedule, to do list is running our lives!!!  I am changing that......I am changing that......I am changing that!!!!!!  I AM REGAINING OUR FREEDOM :)

What does this new found FREEDOM look like????  Well, it still in the works and won't officially begin for 4 more weeks (that is when our last student finishes her externship in Hayden's program).

1) We are taking Hayden's therapy program down to 20 hours a week this summer.   I can't even tell you how freaking good this feels to say.  That's right we are going to rock the therapy room 20 hours a week this summer.  I am going to use this freedom for days at the pool, playing in Grammie's garden, weekly trips to the zoo, trips to the splash pads, walks, bicycle rides, trips to the playgrounds.  I am going to spend time with my friends, my nieces and nephews, and hopefully make new friends.  I have lost several over the past couple years.  The kids are going to have playmates.  We are going to run around and be FREE and celebrate FEEDOM.

2) I am going to leave the house once a week with out the kids for purposes other than going to work or  doctor appointments.

3) I am not going to worry about finding a school for Hayden or what we are going to do about school. When Hayden is ready I will know.  When I know I will find an amazing place for him to continue to learn and develop.

4) I am totally tweaking our therapy program with the help and guidance of the fabulous Julie Sando.  Hayden's therapy program will now fit our family vs. us fitting the therapy program.

5) I am going to live and have the FREEDOM to adjust, tweak, and change whatever I want to change.

So here is to life, here is to living life, here is to loving life, and here is to the FREEDOM of living the life YOU want :)

XOXO,
Brandi