I generally only blog about the good times or exciting new things that Hayden and Ruby are doing. I never want to discourage anyone or have people feel "sorry" for me. The truth is I am feeling a bit discouraged myself right now. Throughout Hayden's journey out of autism and healing there have been many ups and downs. For the past 18 months we have pretty much only experience ups. We might have an off day here or there but for the most part Hayden is doing well and gaining new skills.
Hayden started all day school 5 days a week almost 5 weeks ago. This has hit him hard. He is not doing well at school. He is having outbursts, sensory seeking behaviors, not doing work, and being disrespectful to his teachers and peers. I can't even put into words how hard it is for me to watch this behavior. Hayden is autistic again and it is like a knife has been stabbed straight through my heart. This is the third time in his life that I have watched my son regress and lose skills. Each time is harder and more heartbreaking.
I am really not sure what to do. I am working with his teachers on a new work plan for Hayden. Starting next week Hayden is not going to go to school on Wednesdays and will stay home with me. I also scheduled another round of hyperbaric oxygen therapy treatments the end of this month. The only things that have changed for Hayden is school and we have updated paint and carpet in our home.
I am not seeing these behaviors at home like they are at school. Hayden totally rocked his first martial arts class and was completely into it.
If you have an extra prayer, positive vibes, words of encouragement, or positive energy to send my little man and all the other children faced with autism I will take it.
Brandi
Thursday, September 11, 2014
Sunday, September 7, 2014
A letter to our insurance company……………...
To Whom this may concern:
I am the mother of an amazing seven year old little boy, named Hayden James Hicks. This little boy has overcome more in 5.5 years than most do in a lifetime. My son was born a healthy little boy weighing 8 lbs 6 oz and 21 inches long. He met all milestones early / or right on time. He said his first word at 3 months of age, Mom. Most people were is disbelief that he could say the word Mom and were in shock to hear such a little baby “speaking”.
Hayden was always adventurous and “nosey” wanting to know and see what was going on. He loved to cuddle with me, he loved to look at books with me often pointing to pictures on the pages. Hayden was a good sleeper. He started sleeping through the night at 8 weeks of age and took 2-3 naps a day.
I felt good about being a parent and making the “right” choices for my child. I waited to have children until I was in a solid relationship and had a secure job and home for my future children. I listened to my pediatrician for guidance about medication, nutrition, and vaccinations. I followed the pediatricians recommendations about all of those things.
I was a proud parent. Every well child visit Hayden was 90% for height, weight, and was meeting all milestones.
All of that changed drastically. At 18 months of age Hayden received the MMR and flu shot vaccine at his well visit appointment. He was hospitalized the next day in the pediatric intensive care unit. He was extremely sick. He laid there lifeless, he had a blank expression, and was fighting for every single breath. Hayden was very close to being placed on a mechanical ventilator. He remained hospitalized for the next 6 days. He was diagnosed with asthma / pneumonia.
Three days after the MMR and flu shot Hayden spoke his last word (which was Mom). I remember clearly him laying there in his hospital bed and how pitiful he sounded when he said it.
When we got home from the hospital Hayden seemed very different. I thought it was from all the steroids, breathing treatments, and antibiotics. I thought he just needed time to “heal”. He no longer wanted to be touched and he did a lot of screaming.
Hayden pretty much stopped sleeping at this point. I was lucky if he would sleep two hours solid day or night. He was screaming 90% of the day or night. His pediatrician didn’t believe me but told me to give him melatonin.
Hayden also started lining up cars in a straight perfectly organized row. He stopped responding to his name. In fact he stopped responding to everything. He never acknowledged when we walked into a room. He didn’t listen when we said “no” anymore.
I went back to the pediatrician and expressed my concerns. I asked about having First Steps evaluate him. She didn’t agree with my but signed the form for the evaluation anyway.
Development with Hayden downward spiraled quickly. He stopped coloring, he stopped talking, he stopped babbling, and the most heartbreaking of all didn’t tolerate me touching him.
I noticed that he became sensitive to light, sound, and texture. He often would gag on food and vomit. He became a very picky eater and stopped using utensils.
First Steps came and evaluated Hayden and he qualified for occupational therapy, speech therapy, and developmental therapy. They suggested I read the book “The Out of Sync Child”. I read the book and it summed up my child. I thought Hayden just had some sensory issues at this point.
Hayden continued to “leave us”. He started to only have on expression. That expression was blank, flat, and lifeless. Hayden was in constant movement all the time now. Unable to sit and attend to a task unless it was lining up his cars.
He started hand flapping and watching in his peripheral vision, spinning, running and jumping into everything. He lost his sense of danger. Hayden would climb on our kitchen counters and jump straight off. He got the kitchen knifes and I found him throwing them.
I was on that child 24/7 doing my best to keep him safe. I was pregnant and also working part time. I didn’t sleep because Hayden didn’t sleep. I often didn’t eat because I couldn’t leave Hayden un-attended.
When Hayden turned two I knew there was something much more wrong then just sensory issues. I had come to terms that he was autistic. I thought he had a mild case. I perused getting him evaluated.
When I received the results of his evaluation I was told that Hayden had severe autism. I was told that he would probably never talk, never have friends, need medicated, and would probably need to live in a group home. I asked what I could do to help him. I was told that therapy might help him and medications would help control his behavior. I asked about changing his diet (I had already started researching at this point). I was told that he would starve.
On that day I decided that Hayden was not born with autism and that he was not going to die with autism. When I found out that I pregnant with Hayden I prayed to God to please let this baby live (I had a miscarriage previously) and no matter what illness or challenges this child could have I would love him/her unconditionally and do my absolute best to give that child a good life.
That is what I have done. I have loved my son every single day for the person that he is. I have NEVER and will NEVER give up hope on him. I went home from the doctors appointment and continued my research and networking to help my son. It’s hard to believe that was almost 5 years ago! At that point in time Hayden lost all skills, communication, fine motor, coping, etc.
Where are we now?? Hayden now speaks in full sentences, has friends, goes to a typical Montessori School by himself, plays basketball, plays non stop with his sister, eats a well rounded diet, is learning to read and write, and has such a love for life. He smiles non stop, he is compassionate, and loves for me to hold him.
Our journey was not easy. I choose a path for my child and family that is not traditional and not covered by insurance. I have spent $100,000.00 + in out of pocket medical expenses the last 5 years. Our retirement is gone, savings gone, ability to live comfortably and not worry about bills......GONE.
I have worked my buns off helping heal my child. He eats no processed foods, he consumes no chemicals. I ran a home based therapy program where he received 60 hours a week of one to one therapy. We did hyperbaric oxygen therapy treatment, and countless holistic remedies.
It was worth every single penny and once of sweat that went into it. I wish that I never had to go through what I did with my son. In fact I wish no one has to go through what we did. However, I am 100% grateful for what I have learned.
Hayden is left with low tone in his upper extremities and struggles with fine motor activities. Handwriting is hard for him. Buttoning, zipping, snapping are hard for him. This is where occupational therapy is helping him. Hayden is making progress. It’s documented progress. He is gaining strength. The bummer about this is that we switched insurance companies in July and now Lutheran Preferred will not cover his therapy because they do not see his need for therapy as something that is treatable or from the result of a critical injury.
That is where you are dead wrong. My son was injured. My son was “normal” and typically developing. He was then injured by the MMR and flu shot vaccination.
I don’s use and abuse our health insurance like many other do. When my kids are sick I keep them home, keep them hydrated, make them bone broth, and make them rest. I don’t run to the doctor or ER for every little illness. I don’t give my kids pharmaceuticals.
Brandi Hicks
Thursday, September 4, 2014
Happy 5th Birthday Ruby Kay!!!
Dear Ruby Kay,
I can't hardly believe that you are turning 5 years old in a few short hours. You have brought everything pinky, sparkly, and girly into my life. I am happy, grateful, and a little sad today that my sweet princess is 5 years old already. It's hard to believe you were once my chunky little baby that's favorite activity was eating.
You continue to grow and learn on a daily basis. Your current favorite color is rainbow, you favorite food is snacks that Grammie gives you, and your favorite person is Mommy.
You love mermaids and have spent a lot of time this past summer being a mermaid. My favorite is when you told me that mermaid did not wear bottoms and you determined to only swim in your swim top. I let you. After all we were are Grammie and Papa's and there was no one else around. Later on you got to meet a mermaid at the aquarium and she told you the mermaids wear bottoms.
You are one determined little girl that knows exactly what she wants, when she wants it, and how she wants it. I love this about you. It does making things and times a bit more challenging but I know and see daily that you are getting that there is a time and place for this type of behavior. You are for sure a leader and star of the show.
You love to go to the library dressed in your princess gowns and tell people that your name is Snow White if you are wearing a Snow White gown.
You love to help Mommy in the kitchen and to be the official taste tester. You also love going with Daddy and being his assistant landlord. Assistant landlords often get perks of donuts and cookies.
Your best friend right now is Hayden. You two have such an incredible bond. You also can fight like cats and dogs. You have gotten him to play dress up a few times.
You played basketball this year. When you found out that the other kids would not stop what they were doing to watch you dribble and shoot you decided basketball was not for you. You spent most of the games and practices on the bench with Mommy or Daddy. You did not like it and asked not to play again. You also played tee ball. You like tee ball a bit more and said you would like to play again next year. You really want to do gymnastics. Mommy really wants you to do ballet. You will be doing gymnastics and Mommy is hoping that you will want to do ballet one day soon :) Until then I will continue to love seeing you dress up in my old ballet costumes.
You started school at Oak Farm your 4th year of life half day and recently have started full day. You love school and all that you do there. You bring maps home daily that you make. You love to garden with Sandy at school and often tell me stories of how the little boys in your class call you "poop butt". This morning I observed you putting the dishes away from the dish washer and folding laundry at school. It made me smile. I am so proud of you!!! I love seeing you out in the world doing your own thing.
I often get reports back from those that watch you or spend time with you that you are such a sweet, caring, and helpful little girl. I love hearing this as you usually show Mommy your "mean girl attitude" at home.
You love to play princesses with Grammie and chase PaPa with the fly swatter.
I am excited to see what the world has in store for you!!! Whatever it is Mommy has got your back and will be cheering you on all the way!!! Happy 5th Birthday my sweet and sassy princess, Ruby Kay :) :) I am so proud to be your Mommy!
Love,
Mommy
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| You ate most of your first birthday cake with a spoon :) |
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| You sucked your fingers and held your burpie shorty after you were born. You still suck your fingers and hold your burpie at bedtime. |
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| If there is a veggie tray you are never far away |
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| I always loved the mohawk you had as a baby :) |
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| Coming home from the hospital |
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 http://www.autismtreatmentcenter.org. 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.
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:
http://piece-by-piece4hayden.blogspot.com/2011/11/haydens-son-rise-therapy-room.html
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.
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).
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.
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…..you 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.
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.
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.
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.
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.
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| 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:
http://piece-by-piece4hayden.blogspot.com/2011/11/haydens-son-rise-therapy-room.html
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.
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| Loving me some Son-Rise Mommies |
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| 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).
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| I dressed Hayden in this shirt often. Dream Big Hayden….Dream Big and GO for what you want!! |
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| I had just licked his sweet cheek demonstrating how the kittens in the book cleaned their mittens :) |
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| Who wouldn't want to look at me rocking these glasses and a scarf? |
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| Yes, I will make it as easy as possible for you to give me eye contact! |
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| I will celebrate like no other :) Sometimes I celebrated too crazily and scared my son. |
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| Hayden and Daddy rocking a session. Love all of Hayden's expressions!! SO different then the flat expression he use to only have. |
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| Such imagination!! |
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| 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.
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| 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…..you 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.
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| On our way for our Intensive :) |
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| 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).
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| 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:
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| Hayden playing what sissy wanted to play……..dress up! |
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| Never wanting to be apart from his sister |
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| Giving Daddy a check up! |
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| 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! |
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| Playing dress up with sissy1 |
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| Playing a board game :) |
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| Rolling in a ball |
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| Wearing his hat he made at the library |
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| All dressed up for Easter and ready to go :) |
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| Hayden got the hang of ridding his scooter and understands road safety! |
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| Family pictures……what a dream come true! |
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| Posing like a pro! |
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| Best of friends |
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| Fishing! |
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| Catching frogs |
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| Getting a check up with ease |
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| working at school |
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| Selfies with Mommy :) |
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| Swimming in the hot tub |
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| On a walk looking for turtles and frogs |
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| Yup, I learned to ride my bike :) |
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| Giving me a puppet show! |
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| Dancing in the rain |
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| Loving on his Mommy before bedtime |
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| Yummy……full of life!! The sparkle in his eyes melt my heart daily!!! Oh, so grateful :) |
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| Getting a ride from Dadddy |
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| 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……..to 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.
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| Building at lego club :) |
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| Goofing off at lego club |
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| Ready to do a science experiment 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……..no 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!!!
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