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Thursday, August 21, 2014

It's been three years of Son-Rise :)

It has been three glorious years since I attended Son-Rise Start Up at The Autism Treatment Center of America  I think of all the incredible changes, challenges, and celebrations that have taken place in this time frame.  We have met and connected with so many amazing, loving people through our Son-Rise journey.  There was not a day that went by that I felt alone in this journey.  I felt the love and support of all my fellow Son-Rise families and on days that I felt defeated I closed my eyes and felt their presence.

The day that my sweet Hayden was diagnosed with severe autism at the age of 2.5 was not a surprise to me.  I had been thinking for the past six months that he was autistic.  When the doctor said the word "autism" I didn't cry, I didn't scream, I didn't shut down.  I already knew Hayden had autism and had accepted that.  What I wanted to know was what could I do to help my sweet boy that seemed completely lost.  I was told to get him into intense therapy and that may or may not help, consider behavioral medications, and be prepared to put him in a group home when he gets older.  This was all said in front of Hayden (not that he seemed to notice as he was spinning the wheels on his toy car and screaming).  I asked the doctor if taking gluten and casein out of Hayden's diet would help me.  She asked what he ate……milk, cheese, yogurt, toaster strudels, fruit, and an occasional green bean.  She told me would starve. I left the doctors office with a referral to see an autism specialist and complete determination to help my son.

While I came to realize that Hayden had autism prior to the diagnosis I had also been researching like a mad women on ways to help my child.  I knew absolutely no one that had a child with autism.  For the first 2 years of Hayden's diagnosis of autism we did different supplements, elimination diet based on lab testing, occupational therapy, speech therapy, developmental therapy, and sent Hayden to preschool.  He made gains but was a complete roller coaster with his behavior during this time frame.  So many ups and downs.  I felt like we were completely lacking in the therapy department.  I visited 12 different preschools in this time frame from ABA, private, public, and Montessori.  The ABA preschool left me horrified.  What I disliked most about therapy was that I was suppose to take my child, drop him off and let others work with him, and leave.  I never left his sight no matter how pressured I was too.  I wanted to be involved, I wanted to help my kiddo, I wanted to be the one connecting with him.

My search continued.  I came across the Son-Rise website and signed up for the free information.  The information came and I felt completely overwhelmed by it.  I had a one year old, autistic three year old, and I worked outside the home.  How the heck was I going to run a home based therapy program for my child???

I put the information from Son-Rise into my ever growing research pile.  My husband and I made the decision to attend Autism One that year.  We heard Raun speak and I talked with Brian Nelson.  I thought to myself this feels so right.  I can do this.  I can totally and completely help my son.  Little did I know at the time how much Son-Rise would impact my entire family and team that worked with Hayden.

When I got home from Autism One I had my consultation call that week and signed up to attend Start-up August 2011.  It is difficult for me to put in words what a life changing week Start-Up was for me.  To connect with other parents that knew what I was going through.  To have the unconditional support, the love, the positive energy, and best yet how to look deep inside myself and have the power to control my perspective on life.  In that week I discovered that I was in fact in charge of my own happiness and no one else's.  I could and can be happy in any situation.  I have the power to change whatever I wanted.

One of my favorite moments doing Son-Rise with Hayden.  This was one of our earlier sessions in our program.  I got so many amazing little green lights that day when I pulled out a simple sheet of stickers that we got free in the mail.

The original plan was for me to attend Start-Up and bring what I learned home and teach my husband, family, and team.  Well that plan quickly changed and I felt it was key for Brandon to attend Start-Up himself.  I signed him up to go three weeks after I got home with out even speaking with him.  Boy was he angry.  I let him be angry.  He was adamant that he was not going.  I let him believe that.  In the mean time I booked his airplane ticket, rental car, and filled out his FMLA papers for work.  Did I mention that he was angry???  I let him be angry as I knew deep down in my heart and soul this was what I wanted.  He was (and is) a key player in Hayden's life and I knew that if we were going to give recovering Hayden all we had I wanted us to be on the same page emotionally.

Brandon and I both accepted Hayden's autism very differently.  Brandon was quiet, didn't like to talk about it, didn't accept it, and didn't want anyone to know what was going on.  In fact everyone in our lives didn't accept Hayden's diagnosis.  I was often questioned if autism was the "right" diagnosis.  The majority of the autism Mom's I have connected with have said that it takes the Dads longer to accept the diagnosis.  I on the other hand wanted to tell and reach out to everyone we knew pretty much from the get go.  I knew that Hayden was not born with autism and that he would not die with autism.  One day my kiddo would be autism free and just like the other kids.  I actually set a goal date for him to be fully recovered.  I never lost sight of my hopes and dreams for him. I dreamed of the day that he would call me Mommy again and give me kisses.

Okay, back on track here……….Much to Brandon's dismay he got on the plane and went to Start-Up.  Man was he angry!!  At the end of his first session, the first day, he thanked me.  I knew I just had to get him there and he would completely understand.  He was actually called on first thing in class about being forced to attend Start-Up.  My shy, sweet, guy was put in the spot light right from the start.  Completely out of his comfort zone.  I really feel like Son-Rise has helped Brandon live his dreams and to go after what he wants.  He was a changed person when he came back home.

Oh, that week Brandon was away was complete chaos!!!  With my new outlook on life I took it all in stride and did my absolute best.  In the three short weeks I had been home from Start-Up I had already built a team and Hayden was getting 30 hours in the playroom that week.  It was still in his bedroom at that point while we remodeled our sunroom to become his new playroom.

We seen positive changes in ourselves and Hayden immediately.  I felt more at ease and had a great sense of direction on how to help ourselves connect with Hayden on his terms.  We got glimpses of eye contact, decreased tatntruming, and Hayden curious in what we were doing.

When we started our program Hayden was in stage one on the developmental model in all areas.  Two months went by and I had many questions and still wanted a lot of direction in Hayden's Son-Rise program we were up to 40 hours a week, we pulled Hayden completely out of school, and stopped all occupational and speech therapy.  We had an out reach with Susan Nelson to help us get some ideas on activities to do with Hayden and observe her working with Hayden and ask questions.  It was a great outreach and we got some great ideas.

If you would like to see what our therapy room looked like and a brief explanation of it check out this blog post I did:

We continued recruiting and maintained a 40 hour a week program with Hayden.  I was averaging 10-20 hours a week myself working with Hayden.  We hired a 10 hour a week person 6 months in to our program.  I was not giving real feedback at this point other than offering game ideas, answer questions, and celebrating our team members for a job well done.  I scheduled myself to attend Maximum Impact and an outreach with the fabulous Gerd Winkler :)

First Gerd came and then two weeks later I attended Maximum Impact.  I love, love, loved our outreach that we had with Gerd.  Hayden was instantly drawn to him although he did not want to leave Mommy.  He had become very attached to me at this point.  One of our main goals at this time was to increase eye contact, use 2 word sentences, and less tantruming.  Gerd gave us all great feedback.  In fact this was the first time I ever received feedback working with Hayden and I loved discussing my session with him.  It was also the first time that I really started giving my team feedback and we had our first official team meeting.  The team meetings were super well received everyone loved getting together to brainstorm and discuss what Hayden was doing in the playroom.

A cool point of being the team leader (and Mommy) I supervised all sessions.  I got to see and hear first hand all of the things Hayden was doing with all his team member.  At this point in time Hayden had certain isims that he liked to do with only certain team members.  Hayden also started saying a few of the team members names at this time.  Which there was never a dry eye when this happened.  In fact I sit here in tears recalling these moments.  These glorious moments that are so natural and second nature for my little stud muffin now.  There was nothing more exciting then Hayden's team coming out from a session super pumped or with tears in their eyes so excited to share with me what just went down.

WoW, Maximum Impact was a turning point for me.  I don't have anyone thing that stands out as a "wow" moment overall it was so healing emotionally for me.  I came home refreshed, renewed, with great ideas to give it my all, and completely ready to rock.  Maximum Impact really brought me to focus on what I wanted for our program and lives.  I was completely on board with giving feedback and having team meetings.  This is also when I fully embraced seeking out an externship from local collages to work with myself and Hayden (thanks Emma).

I remember showing video clips of our outreach of Hayden working with Gerd at our recent outreach and myself.  I remember how excited we all were that Hayden was saying two word sentences and having an attention span of one-two minutes.  He was also giving green lights and allowing us to touch his beloved cars for little bits of time.

There was about 6 months of time that no one the team could touch Hayden's cars.  We used lego blocks or crayons to join him in his isiming.  We made the crayons / lego the cars and joined from a distance.

Loving me some Son-Rise Mommies

On our way home.  Refreshed and Recharged!

While at Maximum Impact I signed up to attend New Frontiers in 6 months and started plans to fundraise to do the Intensive Program with Hayden.

Hayden's program changed drastically in the next 6 months.  Everyone was getting weekly or bi-weekly feedback and filling out session evaluation forms.  We also started having monthly meetings.  Giving feedback was a learning curve for me.  I learned that giving concrete examples and really coming from a loving place was the way to go.  I loved hearing from team members about their perspective of the session and brainstorming together.  It was so powerful to get us all going on the same page.

At the team meetings we shared the data we collected all month long and what was going well and what we could improve on.  We went over where Hayden was currently on the developmental model and set new goals.

It always seemed for Hayden that working on one specific goal at a time was not the way to go.  We set goals, we were all on the same page, and we visualized what we wanted for Hayden.  It seemed the harder we worked or went for one specific goal the less Hayden achieved that goal.  It was like we had an underlying "need" for Hayden to do that goal vs. wanting Hayden to achieve that goal.  My little man is one in tune little guy.  He could totally and completely sense if we were having an off today or if something was bothering one of our team members.  I could (so could the team member) see it in his interactions that day.  If I was on edge, Hayden was on edge.  If I did not feel well Hayden would be more low key in my sessions with him.  Hayden has always been so good at taking care of himself.  In those moments I feel that he was reminding us that we should make our selves a priority and take car of our selfs first.

Little did I know that when we had Hayden that he would be my teacher.  I think of all the lessons in life that my 7 year old has taught me to date and I am overwhelmed.  Prior to becoming a Mom I was extremely type a, my way or the high way, black and white type of person.  I was obsessed with work as much I was obsessed with being perfect.  I never left the house with out having the nicest shoes on or my make up and hair done.  I laugh at this and shake my head that I was really this way.  When I was 25 years old I had high blood pressure from trying to "keep up with the Jones".  I lived a charmed life growing up and was determined to continue living that charmed life.  So much so that I was in a constant state of stress and an extremely judgmental person (after all I was constantly judging myself too).

I dressed Hayden in this shirt often.  Dream Big Hayden….Dream Big and GO for what you want!!

I had just licked his sweet cheek demonstrating how the kittens in the book cleaned their mittens :)

Who wouldn't want to look at me rocking these glasses and a scarf?

Yes, I will make it as easy as possible for you to give me eye contact!

I will celebrate like no other :)  Sometimes I celebrated too crazily and scared my son.

Hayden and Daddy rocking a session.  Love all of Hayden's expressions!!  SO different then the flat expression he use to only have.

Such imagination!!

Love this kid soooo MUCH!

Hayden really taught me what pure unconditional love is.  He taught me the power of observation.  I use to be in a constant state of reaction now I simply like to observe with out interruption and let my kiddos show me the way.  I get some of my best ideas on activities for them by watching what they are doing.  Hayden has taught me patience, oh has he taught me patience.

My little Hayden……not born with autism!

It amazes me how cool, calm, and collective I truly am these days.  Did I mention that Hayden use to tantrum 90% of the day and night??  I learned early on that the less I reacted during a tantrum and loved him the better it was for myself and entire family.  The destruction of our home that my husband and I worked so hard on / for.  The holes in the drywall, the permeant marker on the walls, the poop and pee everywhere except the toilet, the cutting of the curtains, hair, the dog's hair, the breaking of objects, the breaking of body parts, and sheer inability for Hayden to understand danger I kept it together (well, the majority of the time).  I remember at one point telling my husband that we should post a sign on our outside door saying, "Caution… will see a naked child, you will see body fluids, you will see objects being thrown, and will witness a tantrum.  We are recovering our son from severe autism.  Enter at your own risk."

Ok, back to Son-Rise :)  Hayden made mind blowing progress during the 6 months between Maximum Impact, our Intensive, and New Frontiers.   It was an exciting time in our lives.  Hayden was learning and doing so much.  As quick as Hayden's new skills came they went.  By the time our Intensive came Hayden had pretty much regressed back to where we started with Son-Rise.  I was crushed and at that moment was not really seeing as a regression and was thinking that any moment Hayden would go back to where he was.

During this 6 months time frame I went for and got an externship with a local college.  I had not one, but TWO students 40 hours a week for 6 weeks at a time.  It was CRAZY!!  At this point in time Hayden was getting 60 hours of one to one Son-Rise time.  The students were busy developing activities, working with Hayden and learning what the "Option" way of life really was.  It is really amazing to see how just how much of an impact Hayden made on people.  Here is what one of our students wrote:

"My Experience with Hayden 
If I could describe my experience with Hayden in the Son Rise Program in one word, I would say it was ultimately fulfilling. As my classes came to an end I was approached by one of my teachers who asked if I would be interested in working with Hayden in the Program for my first externship. After a split second of contemplation I decided to jump at the chance, little did I know at the time that decision would change my life. This may sound extreme. Let me explain myself.  
Sitting in a classroom for the past two years, I was nervous starting out with Hayden as I had absolutely no experience in this area. Pediatrics is only a small area of occupational therapy, I knew I had a lot to learn. My first week I alternated between observing, playing with Hayden, reading Son Rise books and watching videos. By the end of the week I was ecstatic about being there and went home every night thinking of activities and ideas I could try.  
As the weeks went on my love and devotion to Hayden only deepened. I was fully immersed in doing my absolute best every day I was there. The books that I read as my homework and during my “off time” (time spent out of the therapy room) changed my way of thinking completely. They gave me hope and encouragement for every aspect of my life. That’s the root of the Son Rise Program; acceptance and love. The day I realized this I knew I would only continue to help this little boy. I was no longer as anxious or concerned about messing things up in Hayden’s therapy regimen. I knew as long as my whole heart was in that therapy room every day I could do no harm. 
I was absolutely right. The first day that Hayden called me by name I almost cried tears of happiness. Actually, I’m quite sure I did on my drive home that day. Once my mind and heart were open and I could focus on putting all of my efforts into encouraging Hayden to interact with me. And what a magical experience it was! My days there were numbered and I couldn’t believe my obligation there was almost complete. More notably I couldn’t believe how badly I didn’t want to stop working with Hayden. I came home exhausted each night from jumping around imaginary playing all day. I cherished it, playing with Hayden gave me a purpose and I couldn’t have been more psyched about the future.
One day I planned an activity where I was going to bring a pillow case that I had drawn a whale on and a bunch of cut out sea animals into the playroom. Hayden loves the ocean and animals eating other animals so I was pretty excited about my idea. The interaction between the two of us ended up lasting almost forty minutes! (Previous interactions between us were lasting on average 4-9 minutes.) This was so heartwarming for me; to hear Hayden giggling and watch him smile nearly the whole time we played made me so happy in a way I had never felt before. 
I had changed in the time I’d been there. I gained confidence, playfulness, observation skills, creativity and so many more skills I didn’t even know I possessed (my personal favorite was the scary monster voice). I silently thanked Hayden every day for all that he was teaching me. Hayden taught me the importance of patience, devotion, acceptance and enthusiasm. This enabled me to slow down and enjoy this journey of life. There’s so much more to appreciate and take in that as a college student I bypassed all too often. Each day I was devoted to doing my absolute best to encourage Hayden to play and express his imagination. The results were phenomenal, I watched him grow, learn and imitate me. Through a bit of digression in the times he became sick, I was not the slightest bit discouraged. It was obvious Hayden wanted to join us in our world. We just had to keep inviting him and showing him all we had to offer. 
I felt so blessed for the moments that this wonderful little boy decided to share with me. I will forever remember this experience it has changed my entire outlook on the future, both in my personal life and my career."

P.S….Abby, we are SO SO SO proud of you for going after what you want in life and all that you have given our family!!! I have nothing but smiles and love for you girly!

Our Intensive was just that INTENSE.  It was not what I had envisioned our Intensive being.  I really thought that week would be all about Hayden and his program.  Well it was and more.  Brandon and I really worked hard on our relationship that week.  I smile thinking or our time in the Intensive apartment.  That was a first time in a long time that Brandon and I really focused on ourselves.

On our way for our Intensive :)

Hayden LOVED the tigger that was at our Intensive

A month passed from us getting home from our Intensive that it was time for me to head to New Frontiers.  At New Frontiers I embraced Hayden's regression, re-focused, re-charged, and was ready to come home with a new plan in place.

Hayden's regression had nothing to do with Son-Rise.  It was purely medical.  Son-Rise taught me that no means next………….so that is just what I did!  I forged on to find something else to treat Hayden's underlying medical conditions (pathogens, poor immune function, and massive gut dybosis).

A diagram a friend shared with me that is oh so accurate :)

It is truly crazy and my head is still spinning from the progress that took place once I came home from New Frontiers and implemented the new treatment protocol.  It seemed every day Hayden was growing and developing a new skill and has not stopped for the past 18 months.

Here I am working with Hayden in his Son-Rise Room:

Hayden playing what sissy wanted to play……..dress up!

Never wanting to be apart from his sister

Giving Daddy a check up!

I was making dinner in the kitchen and the kids were in their work tower.  Ruby said, " Just remember Hayden I will always love you for who you are."  Sweetest moment ever!

Playing dress up with sissy1

Playing a board game :)

Rolling in a ball 

Wearing his hat he made at the library

All dressed up for Easter and ready to go :)

Hayden got the hang of ridding his scooter and understands road safety!

Family pictures……what a dream come true!

Posing like a pro!

Best of friends


Catching frogs

Getting a check up with ease

working at school

Selfies with Mommy :)

Swimming in the hot tub

On a walk looking for turtles and frogs

Yup, I learned to ride my bike :)

Giving me a puppet show!

Dancing in the rain

Loving on his Mommy before bedtime

Yummy……full of life!!  The sparkle in his eyes melt my heart daily!!!  Oh, so grateful :)

Getting a ride from Dadddy

Why do I have to pose with sissy??

Hayden went form 40 hours a week therapy program to going to school 5, 1/2 days a week because he was ready.  He wanted to go to school.  He wanted to make friends.  He was oh so present in our world.  He smiled, he laughed, he communicated effectively.  He was stage 5 on the developmental model.  So off he went…… school!!!  To school just like all the other typical children.
I was thrilled and scared shitless at the same time.  I had a really hard time letting go of Hayden.  Thankfully the school Hayden attended / attends has an observation room with a one room mirror that I could/ can observe at any time.  He did great!  Hayden loves going to school.  His favorite parts last year were going to P.E. and eating snack!  He grew socially and emotionally so much last school year.
Hayden played basketball and tee ball this past year.  He loved basketball and even scored a goal at one of the games.  Baseball he was not as into.  We participated in several activities at our local library.  Hayden's favorite is lego club.  
Building at lego club :)

Goofing off at lego club

Ready to do a science experiment at the library 
Hayden Dancing at the Library:

We continued Hayden's program for another year doing about 12 hours a week.  We really worked on just having fun and sharing our interests with Hayden.  None of us were ready to let go.  I knew it was coming Hayden was set to attend all day Kindergarten for the 2014-2015 school year.

I didn't really talk about ending his program.  We were down to one team member and myself working with Hayden.  The decision was made and we ended Hayden's program.  He graduated :)  What a joyous, bittersweet moment.  A moment that so much work, love, and dedication went into.  My little mad did it.  He recovered from autism.  He gave the gift of unconditional love, the gift of living in the moment and being present to so many amazing people over the past three years.

Hayden has been the real teacher through his recovery.  What a gift….what a life changing…….hope giving…… means next gift.  I am forever changed and grateful!!!!

Thank You, Thank You, Thank You to all of the lovely, amazing, real people at The Autism Treatment Center of America.  What a gift of love and acceptance have you shown me, my family, and my community!!!!  I have NOTHING but pure, raw, real, love for you all!!

Son-Rise healed my family emotionally and gave us the tools I wanted to connect with my son on HIS terms!!!