Our Son-Rise Journey

 

“The way we choose to see the world creates the world we see.” -Barry Neil Kaufman

I am in yet another transition period in my life in which I have become determined to see the growth and beauty of the experience through the challenges in front of me. One of these challenges is watching a volunteer that has given so much to me and my family over the past 3 years as well as another one that is full of so much life start new chapters in their lives. It’s amazing how much another human being can change your life just by giving you their compassion and time.

When I initially tell people that my son has autism, it is very many times met with an “I’m sorry.” In such a self-focused and self-person world, it is easy to succumb to the poor me attitude when met with what may be considered a challenge instead of finding that opportunity to grow through it. In the beginning stages of his diagnosis, I have to admit that I initially enjoyed what I felt was pity, as if it gave me some badge of honor. However, my response now is always, “Thank you for your compassion, but don’t be sorry.” My son is the reason I now know how to actively choose happiness in every moment of every day. Happiness is not in status, money, how many friends we have, etc. It is in the relationships that we hold with every human being we encounter.

This lesson is continually taught to me through watching my son find joy in such simple things and mostly watching the people who have so freely given their love, dedication, time, acceptance, nonjudgement, commitment and whole selves to us these past few years in order to give my son a chance at a more fulfilling and more connected life. They were all initially strangers…..strangers, who have shown love and compassion in a way I can only aspire to emulate. I’m not sure I can ever repay them, but what I can do is continue to live my life by their example and effect lives around me in this way.

What have I learned about acts of kindness?

I have learned that it is not one-sided……you are half of it. It’s never a sacrifice when you fully give of yourself to better another human being’s circumstances or life. When you do this, you take the focus off you and your challenges. When you place your positive energy on another soul, your life becomes a hopeful experience which brings about your own joy and happiness.

Giving is never about doing without. It’s about making greater room to receive.

Quality of life does not depend on what you have. It depends on how much you give of your heart. One person’s positive energy can profoundly change lives. Every action you take has an effect on people’s lives and the lives around them. This positive energy can then have a ripple effect and in essence has the potential to change the world!

The biggest lesson I learned is that by loving humanity in this way, you become an example of what is possible, an inspiration. You open awareness to others and their own potential to effect positive change in the world around them. You also teach gratitude, compassion and love through your actions which speak so much louder than words.

To Carter and KD:
I am forever grateful for you both. MY life has been forever altered because of the love you have shown our family and my son. Every milestone and challenge that I was initially told my son would never meet but now has met and surpassed is a celebration of your faith, love and dedication to our family and this program. Please know that YOU are the reason we have been able to learn how to find happiness and joy in our daily life. I love you both dearly and know that you will both continue to effect the lives around you in this way. Thank you for dreaming with us and reaching for the unreachable!

In the words of Maya Angelou:
My wish for you is that you continue. Continue to be who you are, to astonish a mean world with your acts of kindness.

Carter, I have included my favorite video of Lucas and you in the playroom.  This is the first time we saw his sense of mischief and humor in the playroom.  Such a great moment!

KD, I love this video of you, because of the love and energy that just radiates in this interaction.

I recently had the opportunity to attend an event outlining what it means to be an ally to the LGBTQ community and while listening to each individual courageously share their story about their lifelong journey and struggles with the freedom to be themselves without bias, generalizations and judgements from their surrounding communities, I began to realize what we all share as human beings.  At our core, the commonality in humanity is the desire to be loved, accepted, supported, understood and appreciated for who we truly and authentically are as individuals.

My experience at the LGBTQ event and Autism Awareness Month got me thinking about what it means to be an ally to an individual with autism or to the people who love them. As I began to write down what I felt an ally would be through my experience with my son, I realized that many of the following could so easily be paralleled with those with any disability or all people in general. After all, we all have things that make us different and subject us to judgment and bias.

How To Be an Ally

1.  Acceptance. When we are able to accept a person and their situation completely as it is, with a nonjudgemental, accepting attitude, we can then embrace the experience as good, thereby allowing us to see more, love more and have more energy to support and make a difference. Acceptance means removing the qualifiers. People who are in the presence of someone who is truly nonjudgemental, accepting, compassionate and welcoming feel safer and are more comfortable to do things that are challenging for them.
2. Do not pity them or their families. Pity is an expression that comes from a negative evaluation of a challenging situation, many times coming across as being labeled as something bad. Autism is a part of my son.  It is not who he is.  Although some components of it most certainly are challenging, there are many parts of his autism that are special and beautiful. It’s all about perspective and perspective is everything! Choosing to work towards changing an unproductive perspective is courageous, empowering and doable. Instead of pity, practice compassion. Compassion is the willingness to be personally involved in a person’s individual experience instead of keeping a safe emotional distance through pity. It’s the willingness to stand along side those with autism through support, encouragement and help.
3. Person First Language. My child is first and foremost a child. He has autism. He is not primarily “autistic.” The word “autistic” means “of or relating to autism or a person with autism.” Although the word “autistic” is accurate, for those of us who live with and love a person with autism, we live with a frustrating lack of knowledge and with unfair stereotypes assigned by the world around us.  The word “autistic” does not inspire reactions of a kind nature and ultimately makes it difficult for people to see the whole person as they are past this label. Sadly there are also well-known websites that pair the word “autistic” with the synonyms of “catatonic, emotionally dead, heartless, narcissistic, unfeeling, untouchable, etc.” Not a single one of these synonyms describe my son. I personally see my child first, “with autism,” instead of him just being autistic.
4. Never presume the level of competence of an individual with autism or believe that they are unaware of the world around them. The scientific truth is that only 15 to 25% of children with autism tested today fall into this category and who knows if that is even accurate. We are still learning the different ways that persons with autism are able to communicate such as through adapted alternatives like assistive technologies or RPM (rapid prompting method). What we do know…… there most certainly is a person “in there” and it is just unlocking the door to the way they communicate. There are numerous publications, books and blogs written by nonverbal people with autism that allow us the ability to see this perspective and so much more.
   

   When Lucas was given his diagnosis, I was given the long laundry list from his pediatrician of things he would never do. Things like: “ He may never fully communicate. He may never have friends. He will never show me love, etc.” After deciding to abandon those principles and concluding that no one was going to put a limit or ceiling on my children, neurotypical or with autism, I can tell you that all of these statements have been proven untrue. If I had believed those predictions as true and thought that he had no capacity for learning, experiencing happiness, and developing loving relationships, I probably would not have looked for opportunities to reach him in his world so he could do so. It would have been a self-fulfilling prophecy. Nothing is predetermined and all life is filled with open-ended opportunities!

5. Please do not call autism a disease or an epidemic. It is neither of these and can come across as insulting to those who love someone with autism. Autism is a social-relational disorder.
6. Respect an individual with autism’s need to do repetitive, exclusive movements or speech fragments. Many times they are doing these things to take care of themselves. Their systems process sensory input differently than ours and it can be difficult for them when taking all of this in from their surrounding world. Their sense of smell, hearing, touch and vision can be effected in ways that we simply can not even comprehend. This can be extremely overwhelming for them and these are the incredible ways they have found to self-regulate.

There’s a quote that is numerously repeated throughout the “autism world” and I’m not sure who said it, but it definitely encapsulates my experience of being one of those individuals who loves a child with autism.  It states, “I thought I would have to teach my child about the world. It turns out I have to teach the world about my child.”  My hope is that my insights about my experiences with my child with autism today and on this blog inspire hope, respect, understanding and love for the autism community.

I thought I’d also include a short little clip of our newest volunteer in the room with Lucas.  Her energy, enthusiasm and excitement is nothing short of amazing.  All of these beautiful people who so freely give of themselves are the reason Lucas has grown so far in this program and in life in such a short period of time.  I am more than grateful and humbled every day by their love, compassion and unbridled willingness to do the fun, crazy things they do every day in that playroom to give my son nothing but opportunities.  Enjoy!

The following is a repost of an article I wrote this past June.  I felt that I needed a reminder of the importance of being my authentic self, even in the face of judgement.  I feel that ultimately when we limit who we really are, we are not only doing ourselves an injustice but we are also putting our value into the hands of those around us, thereby effecting our ultimate happiness.  I hope for those reading for the first time, my words resonate with you and those revisiting that this serves as a reminder of how amazing you and we all are in our authentic state.

My 5-year-old daughter and I were playing our before bedtime “game” that she has so indelibly named ‘Hearts and You.’  It’s a game where we practice voicing our gratitude or what we love about the people in our lives, moments we shared/experienced that day, unicorns, dinosaurs, you name it!  This night we decided to focus on ourselves and our core family.

We talked about what we loved about ourselves, then each other, then dad, then brother.  When I asked her what she loved about her brother, she stated “I am grateful for his autism.”  When asked why, she simply stated with such confidence, “Because it is part of him and I love him.”  What a beautiful testament to acceptance but it also made me think about the power of authenticity.  Authenticity is so difficult for pretty much the majority of the human race because of our innate desire to be accepted.  Autism is uninhibited by this need.  My son’s autism allows him to be whole-heartedly authentic without social anxiety or feeling the need to be “accepted.”  He is completely happy being Lucas in his “Lucas” world.  What a life lesson to learn from my son and something my daughter seems so naturally inclined to understand.

We tend to get lost as we grow and become adults while trying to make our place in this world, because it seems our children just ‘get’ what it means to be authentic and embrace the value of being yourself.  We certainly aren’t born with baggage or future anxieties.  We come into this world easily being able to express what we feel and how to love unconditionally.  Children are naturally filled with life, a sense of wonder and the desire to explore, create and live in the moment.  As Barry Neil Kaufman has stated, “Children naturally display a wholeness of person without study or premeditation.”

Somewhere in life, everything shifts.  Rather than be encouraged to stay in this child-like frame of mind, our culture sets standards for us to follow.  Over time these standards create a world where our thoughts become more important than our authentic feelings.   When we make our thoughts a priority over our feelings, our focus begins to shift and we begin care more about people’s opinions and judgements which in turn stimulates our fears.  These fears ultimately increase our need to be accepted.  Our self-worth all of sudden becomes a product of other people and their opinions of us.

Additionally, different people expect different things from us , so we begin to compartmentalize ourself based on the person we are interacting with in order to gain their acceptance.  We begin to form so many different false self-images that our self-worth comes from these instead of our authentic self, and when we are not authentic, we essentially begin to lose who we really are.  It’s no wonder we can’t figure out what we think, feel and want and inevitably end up remaining unhappy!

I remember having a personal dialogue with my Son-Rise mentor and mentioning how I hid pieces of myself for fear of judgement.  The response I received was pivitol for me in starting my journey to truly find my authentic self.  I was asked, “Do you think you are not being judged when you choose to hide these pieces of yourself?”  My reflection on this statement really changed the way I viewed myself and my decision of how I wanted to show up in this world.  I realized that I couldn’t continue to trade authenticity for safety and expect to remain who I was at my core.

I also have come to realize that judgements are inevitable and that every single person is going to see life and other people through their own personal lenses.  These lenses were created by their upbringing, experiences and egoic illusions.  Judgements are about them, not me…period.   So knowing I can’t control how a person sees me, I realized I’d rather be myself with people and know the ones who surround me accept me fully, then to pretend and have to maintain the illusion that I am something I’m not.    In effect you get to be loved for who you really are and not who you are pretending to be.  It is so much easier to be your truth when you stop looking for approval and begin loving yourself.

We cannot truly experience the benefits of friendships and relationships if we are not authentic.  In essence, it is authenticity that connects us as human beings.

In striving to be my authentic self, I have found the following to be an integral part of the process.

1. Be honest with yourself.  Don’t try to live up to a label or false image.  Give yourself permission to be you without apology.
2. Respect and value yourself.  We all have strengths and weaknesses.  Know that these make you unique and awesome! Your weaknesses do not define you.   It is important to realize that your flaws can help bring people closer together.  When you realize and embrace this, your flaws seem less like liabilities and more like assets!  Remember that you set the bar in how you are treated.  Others will treat you with the same respect you show yourself.
3. Don’t judge yourself (Perfection does not exist!).  You have nothing to prove.  Give yourself permission to not be perfect.  Don’t carry around any labels or past mistakes as if they define you.  Your past actions shape you, but you don’t have to be what you have been.  You have a choice to judge yourself by your worst moments or your best.  The important realization here is that you get to choose!
4. Love yourself.  People can only love us if we believe we are lovable.  Also, By loving and accepting yourself, you will create a space where you can authentically love others.  It is important to remember that we are all needed by others.   You will find that people are more likely to share their struggles only after they have been through them and are on the other side.  That’s because it’s easier to talk about what you have been through instead of what you are struggling with right now.  Your story and struggles need to be heard and it is a wonderful thing to be vulnerable and authentic in sharing them.  By doing so, you will open up a space where the people you have relationships with will be inspired to be authentic as well.
5. Know that you matter.  Realize that you impact lives every day.  Put love into action every day.  Even if you are not recognized for it, know that you make a positive difference by one small act of kindness.
6. Make time for solitude.  It is in this alone time that you will be able to create a safe space for self-reflection to enable you to explore your authentic self.  In solitude, you are able to clearly see what you are truly like in your own company when you are not putting on a false image for the people around you.
7. Don’t people please.  When you work so hard to please everyone around you, you end up prioritizing yourself last in order to be sure others are comfortable.  By consistently doing this, you are telling those you have relationships with that what they think or say matters more than what you think about yourself.  You will never be able to please others to the extent you want.  In the end you spend so much time and energy trying to be who you think someone wants you to be that you forget who you are and what you want in life.  This ultimately leads to questioning yourself as to why you are not truly happy.

There is a reason we live vicariously through our children.  It’s because they are naturally inclined to be themselves and emanate happiness.  This is where the wonder, excitement and the ability to be present comes from.  They are truly our best teachers in realizing the recipe in finding our authentic selves and ultimately embracing true happiness.  I am grateful that I have been given the gift to be open enough to receive these life lessons my children and Son-Rise have so eloquently taught me.

If you want to know how to treat a child with autism…look to their sibling, they will show you!

I am excited to share Ashlyn’s viewpoint of her brother and his autism!  I am so thankful for my daughter and her uncanny ability to understand, appreciate, love and accept her brother.  She is the reason Son-rise came to be a part of our household.  Let me tell you why…

I remember when I first began exploring the Son-Rise program as an option for Lucas.  They were explaining the premise of the Son-Rise program to me.  The initial, most important piece was reaching our children so we could relate to them.  They believed that joining our special children in their world, doing exactly as they do when they are doing exclusive repetitive, behaviors (commonly known as a stims) was the answer to ultimately creating this meaningful relationship with them.  The Son-Rise belief is that “They show us the way in and we show them the way out.”  (As a side note, some examples of stims include repetitive, exclusive behaviors such as repeating phrases, yelling loudly, running back and forth, shaking a chew tube, staring out of the corner of their eye at something, etc.)

Prior to Son-Rise, my whole background had been in repetitive table trials, generalization trials, behavior modification….essentially Applied Behavioral Analysis (ABA).  So I knew that if I was going to choose the Son-Rise program for my child that it meant I was literally taking the complete opposite approach to what I had been trained to facilitate with him for the past 3 years.  As I began to get over myself and all the work I had personally done to get Luke this far, I began to allow myself the time to digest what they were really telling me.  Although my gut was telling me, “Yes!!!”, my head wasn’t there yet.  After all, we had invested so much time, money and effort into our current therapies and he was making progress, mostly cognitive progress.

However, what I really wanted for my son was the ability to have meaningful relationships, to love and allow being loved.  I reminded myself why I ultimately began looking at Son-Rise.  I then thought about the only human being I could think of that Luke was relating to at the moment.  I mean truly relating to, on a human level.  That one person was my daughter Ashlyn.  As I began to reflect on her interactions with him, I began to realize that she naturally and instinctively regularly joined her brother in his world and he connected with her as a result of it.  It was because of this realization that I decided I was going to plunge feet first into this program.  So ultimately, Ashlyn was my teacher.  I am so thankful for her and her innocence in setting me on the right path to reach my previously unreachable son.

Why does joining work?  Our special children tend to be very much in their own world and when they look around them, there is no one doing what they do.  They are in essence very alone by nature and we are unrelatable to them as a result.  When we choose to  join our children, we show them commonality, that we have an interest in them, that we love what they love, and we also open up a world of truly understanding them.  Isn’t that the foundation all relationships are built upon!?

In my very first joining session with my son, I was greeted with my first heartfelt hug initiated by Lucas!  I had never received a hug from my son since he regressed into this world of autism, so I can assure you that the power in joining our children speaks volumes to them and his reaction was just a testament to this.  My son who would not previously allow me to touch him, sit next to him or at times wouldn’t even allow me to be in the same room with him was compelled to hug me!  This hug was one of the most moving experiences of my entire life and the reason my son is where he is today in this program!

Below is my interview with Ashlyn. I hope you enjoy her answers as much as I did.  Her ability to see him as her brother always first and foremost is a constant reminder to me about what it is to be human in all capacities.  After all, in her words, ” I love him because he is Lucas and he is my brother.”  If that doesn’t say it all!

What is your favorite thing you love about your brother?  I love that he has autism.  Autism makes me happy because it feels like he is my brother.

What do you find difficult about your brother?  It is hard to get him to stay so I can put sunscreen on him.   Also, when bud does autism things, it makes me feel weird and sad.  What autism things? When he squeezes me hard or pinches me on the leg.  Why do you think he squeezes or pinches you?  He squeezes me because he is excited and he wants to share his excitement with me.  How does that make you feel?  Happy.

What do you think autism is?  Sometimes I think he doesn’t understand what I am talking about.  He has a hard time telling me what he is thinking.  I do love it when he and I chase each other in the back yard.

What do you think it is like to have autism?  I think it would be hard not to be able to understand.

What do you think is great about autism?  It makes me happy that brother gets to be himself and I get to be myself.

How do you feel about helping and looking out for your brother?  It makes me happy because that’s my job.  Why do you feel it is your job?  Because I love my brother and that is what I want to do.

What do you think of the Son-Rise Program and Luke’s playroom?  I think that the Son-Rise program is teaching Luke how not to do bad stuff like pulling over the chairs.  It is also teaching him how to play with me.  I think the playroom is fun and it makes me happy to be in there to play with new toys.

What do you think about all the new people and volunteers coming in our home to play with Luke all the time?  I like them because they are helping my brother.

When Lucas throws a tantrum, how do you feel?  Sad because I feel like I have to lay with him.  Why do you lay with him? I want him to feel better.

Is there anything you would change about your brother if you could?  To not have tantrums.

Is there anything you wish you were able to do that your brother currently does?  He is really good on the exercise ball.  I wish I could bounce on the ball without my hands and go across the room like him without touching the floor.

How do you feel about mom running a home program for Lucas while you go to school?  Happy because mom is helping him get better.

How do you feel when:  Lucas yells loudly in public?  Happy because it’s fun, but sometimes he startles me.  Runs away? Sad.  I worry about him.  Runs around outside in just underwear and a t-shirt? I laugh because it’s funny.  He’s being silly.

How do you feel when people ask questions about why your brother is doing something, for example when he chews on his chew tube?  I tell them he chews on it because he likes it.  It doesn’t bother me to answer questions about him.  It makes me happy to tell people about my brother.  Sometimes I tell brother to say hi to people and he does.  That makes me happy too.

How do you feel that your brother can’t do things or talk like you can?  Sometimes sad, because I just want him to play with me.

What is your favorite thing to do with your brother?  I love to jump on the trampoline with daddy and brother because I like myself when we are jumping together.

What is your least favorite thing to do with brother?  When he asks me to run with him, but I don’t want to.  He just keeps asking and it can be annoying.

How do you feel when your brother hugs you?  Happy.  It really really makes me happy because I love my brother.

“Nothing carries more potential for change than individual acts of human kindness”

-Jamie Winship

It truly took this journey with my son to fully understand the meaning and power behind the message in this quote.  It’s amazing how a few individuals and their love, dedication and compassion for our family could’ve so completely altered the way I see the world around me.  Because of them, I now see love where I saw judgement, I see hope where I saw despair, I see unending reasons to be grateful where I saw reasons to be resentful and most importantly……. I now realize the substantial impact an act of kindness can truly make on someone’s life and the potential it has to change them forever.

Meet Gretchen and here is her story:

I consider myself to be a very fortunate person. My husband and I have 2 wonderful children and 4 adorable grandchildren, with one more on the way. Because of his career, we moved frequently. By the time we ended up here in 2001, we had moved 17 times, lived in 8 states, and also spent 5 years in Switzerland. We had some awesome travel opportunities and got to know so many wonderful people/neighbors.

With our children & their families living in other states, and my husband & I both retired, I had to find some things to do. As a child, I learned by example about ‘the milk of human kindness’. My mother was a very active person and volunteered in many different arenas. I never really thought about it until I sat down to write this, but I guess I am just an example of how ‘the apple doesn’t fall far from the tree’.

I am blessed to have lots of energy, good health and the flexibility to spend my time doing things that I love. I spent several years building houses for Habitat for Humanity, both in Michigan and Mississippi, following Hurricane Katrina. My next opportunity was with an organization that provided equine therapy to the special needs population, both children & adults. It was there that I met Lucas and his family. He was just one of over 100 riders who came each week. He stopped coming to classes and I missed him. One day, I sent a note to his mom, asking how he was doing…and that was all it took. She educated me about the ‘SonRise’ program, shared videos, answered questions & asked if I’d like to become a member of the team.

I have a degree in education, and have worked with children of all ages throughout my adult life. I also had 6 years experience working with the disabled population at the barn. One would think that becoming part of Lucas’ team would have bean a no brainer for me. In reality, I was ‘welcomed’ to the team, immediately. Everyone is so kind, loving and supportive. But, I was intimidated by my own ‘shyness’ around Lucas. I think he remembered me from the riding classes. But, here I was entering ‘his world’, where he was the boss, and I felt this overwhelming need to be accepted by him. I had to learn to be like Lucas, and to try to understand what motivated him and his behaviors. In the beginning, he seldom looked at me, which was pretty intimidating. Some days we made baby steps, and some days no steps at all. But, fast forward to this time, which is almost a year, and together we have made huge strides. I wouldn’t have thought to touch him, in the beginning. Now he will come up to me and ask for tickles, hugs, and squeezes. We will sit next to each other on our balls, looking into the mirror, and I’ll see that he is staring at me, and there is a huge smile on his face and a twinkle in those beautiful eyes. He will ask for toys or books or other objects. We can roll around on the floor tickling, and we can play games pushing against each other’s feet. I am now comfortable in his world, and there are definitely times when he is firmly rooted there. But there are more and more days when he is giving the ‘green light’ to join in our world.

I believe that in most circumstances, happiness is a choice. All of my family and most of my close friends know about Lucas. They know that my time with Lucas in his playroom is ‘my happy place’. I am so thankful to Shannon for sharing this program with me and allowing me to become part of it. I know there will come a day when Lucas will recover from his autism, and we won’t be spending time in the playroom any longer, but we will always be family!