Why Autism Speaks Doesn't Speak for My Family

It has been about six months since Caroline was diagnosed with Autism.  My heart ached for what the diagnosis meant for Caroline, for our family, and for me.  I immediately went into the information seeker phase; since Caroline's diagnosis I have read Far From the the Tree, Carly's Voice, The Way I See It: A Personal Look at Autism and Aspergers, The Reason I Jump, Look Me in the Eye, The Spark, not to mention countless blogs on the subject of Autism.  And I have followed all of the major advocacy organizations on social media.

Recently, I became aware of a controversy regarding the largest and most influential of advocacy organizations for persons with Autism, Autism Speaks.  The deeper I dug, the more my heart sank. My family has only been on the journey with Autism for a short period of time, but we believe it is impossible to separate the essence of Caroline from autism. In other words, Caroline would not be the same person without autism and even if a cure were to be found, I am not sure how we would respond.  Don't get me wrong, Caroline's life is full of challenges and my heart aches for each of these challenges. However, some of the most defining characteristics of Caroline are those that are a result of autism: her obsessive love of frogs, her sensory seeking behavior, her wonderful laugh--frequently at inappropriate times- are all from autism. Our family's approach to autism is what Andrew Solomon, author of Far From the Tree, would consider the identity model, "Fixing is the illness model; acceptance is the identity model; which way any family goes reflects their assumptions and resources." As logic would follow we invest mightily in resources that will allow Caroline to live the most autonomous life possible (ABA therapy, OT, Speech, music therapy, and opportunities to engage with typical peers).

The more I learned about the mission and agenda of Autism Speaks the more I realized their agenda is based on the illness model. This is demonstrated by the fact that in 2010, Autism Speaks spent just 4% of their budget on providing services to persons with autism. Also, recent comments by their leadership have forced me to realize that Autism Speaks Does Not Speak for my Family.  Suzanne Wright, who co-founded Autism Speaks in 2005, posted a statement (the day before the launch of the Autism Speaks to Washington Summit). Her words were difficult to read.  She describes the 3 million children living in the United States with autism as "lost" and "missing". She then goes on to talk about the struggles endured by the parents of children with autism:

These families are not living.

They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely – 24/7.

Later, she questions:

And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?

Three times in her commentary, she explains horrible situations that are followed in bold typeface by:

This is autism.

It saddens me that Ms. Wright failed to identify the amazing gifts those with autism share with the world. And further that she fails to realize that autism is part of my daughter's identity-not her whole identity but part of it. Finding a cure for autism is not the same as finding a cure for cancer it is much more complicated. As Jim Sinclair has explained autism is not an appendage:

"This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

"I wish my child did not have autism,"

what they're really saying is,

"I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces" (Sinclair).

[caption id="attachment_1166" align="alignleft" width="300"] We want acceptance, not a cure.[/caption]

With autism comes challenges but Caroline comes with autism. During the tough times, I remind myself autism is tough, loving Caroline is easy. My job as Caroline's parent is to give her the tools to be as autonomous as she can be in this world; to allow her to unlock her potential, and to let her decide how how she will use that potential  It is surprisingly similar to my job as Vivian's parent - the only difference is that I need the help of trained OT, PT, Speech, Feeding, and ABA therapists to unlock Caroline's potential which requires tremendous resources.  Ms. Wright's words left me looking for an organization that was more closely aligned with our family's advocacy needs. But when I learned that the Judge Rotenberg Educational Center-- an organization with a documented history of abusing persons with disabilities--tabled at the Autism Speaks to Washington Summit, I almost lost my lunch.  Lydia Brown, an Autistic advocate, provides a complete and chilling history of the Judge Rotenberg Educational Center.  I just cannot conceive of supporting an autism advocacy organization that would endorse this group - a group that uses a form of electric shock aversion therapy -  as a trusted resource.

I want to be clear, I know that I have blogged about how trying it can be to be the parent of a child with autism but I hope that I have also shared the joys it brings. Part of the reason that parents of kids with autism have to work so hard and have such long days is because there is not adequate support or services for our children or families. Another major challenge is finding true resources that will help with autism, but when Autism Speaks considers an organization that has sued for the right to use electric shock aversion therapy on persons with autism as a resource, they demonstrate their true goal of eradicating autism, not supporting persons with autism.  For these reasons and many more, Autism Speaks does not speak for me. 

I Can See Clearly Now

The morning after accompanying Caroline to her sleep study, on a day when our only vehicle is in the shop, and when my to-do list is a mile long is the best day for "it" to happen.  "It" made me realize that the hustle of bustle of simply trying to keep up with my life often causes me not to stop and celebrate the truly wonderful moments in my life. I get caught in the minutia of the mundane, find myself focusing on what I believe has to get done (the SSI application, the medical history form for this appointment or that, applying for this grant, cleaning my bathroom so it doesn't get condemned by the health department) rather than getting done what I can and taking time to enjoy the splendor that surrounds me.

Flashback, at this time last week I was writing a blog about a bout with depression that has been particularly challenging.  I wanted to sit on the post of a while before sharing; sometimes I wonder if I share too much of myself online, the answer is, yes I do.  But I hope that other people benefit for my experiences and my honesty and at the end of the day if someone thinks less of me for sharing a real part of me, I guess that is more telling of them than me.  So here is the post I started writing last week...

There are days that I would rather not engage with the physical world but rather just watch the digital world float past me. On these days, I am most comfortable nestled in my bed, alone, behind a closed door.  I don't mind the sounds of my family enjoying life, they are somewhat comforting-but I have no desire to join in their fun. Despite the guilt, I cannot force myself to clean the house, fill out the mountain of paperwork, or do any of the other million things that are on my list. During the week,  I drag myself down to my office log on to my computer and force myself to respond to emails, write documents, and continue to stumble through my professional day.

I felt the perfect storm brewing so I went to my doctor and began anti-depressants and anti-anxiety medications at the beginning of the summer.  I started the meds just in time, my mood and energy level plummeted just as my stress level soared.  Perhaps the chemical imbalance is responsible for some level of clairvoyance.

I have an established history with depression and anxiety.  At times, when I don't have the energy to move, I wonder if the depression is caused by the many challenges in my life or if the challenges in my life seem greater because of the depression.  When the depression sets in, despite my best efforts, the only thing I can see is the injustice that surrounds me.

I laugh at my life whenever possible, I try to embrace the joy and wonder that surrounds me.  But there are days, days like today, when I can no longer muster the strength to try and convince myself that I am just tired or that I will get a break soon.  I am physically and emotionally exhausted.  Many activities I used to find enjoyable are now a chore.

[caption id="attachment_1157" align="alignright" width="300"] The ladies and I spent most of Saturday at Morgan's Wonderland. It was a great day--a day that allowed me to see the good the surrounds me. Including what an amazing big sister Vivian is.[/caption]Fast Forward.  I told John how I was feeling and as always he rose to the occasion. On Saturday, he suggested that I take the ladies on an adventure and that he would stay home and clean. And then on Saturday night, he told me to go see a movie by myself.  He allowed me enough space to wallow and escape while creating an opportunity to enjoy the wonderful things in my life.

On Sunday night, I was really tired. But Saturday was a good day and I decided that I was going "to fake it until I make it." So I mustered the energy to take Caroline to her sleep study.  It was an experience...Caroline was all over the place, kicking her legs like a mad woman (in her sleep) and took up most of the bed.  But she woke up so happy, so very happy. I hardly realized how little sleep I got because her joy was energizing.

When we got home, I put Caroline in her room to "rest" for awhile...it was only 7 am.  I crawled into my bed planning to sleep for about three hours or so.  When I woke up, I went out to the loft. Kristen was carrying Caroline to her room...so Caroline's back was to me.  I snuck up on her...and tapped her back.  Caroline looked directly at me and said "Momma."  I looked at Kristen--I was so overwhelmed....I loudly told Caroline how happy she made me...Apparently I was too loud because Caroline ran away from me.  But Caroline said "Momma."

The joy that comes with her sweet voice uttering "Momma" with perfect clarity is like no joy I have ever felt.  And perhaps the joy is amplified because it came just as I was emerging from a dark patch.  I write to remind myself how far we have come....this is not just Caroline's journey...it is our family's journey, we share her challenges and her accomplishments.  And despite how much I try to remind myself how much I have grown as a parent, spouse, professional and a person since welcoming Caroline in this world there are still tough days--tough days made harder by depression. But today, I celebrate Caroline's new word, "Momma" and I thank Caroline for giving me the last push I needed to step out of the darkness and back into my life.

Remember How Far You Come

There are days that I would rather not engage with the physical world but rather just watch the digital world float past me. On these days, I am most comfortable nestled in my bed, alone, behind a closed door.  I don't mind the sounds of my family enjoying life, they are somewhat comforting-but I have no desire to join in their fun. Despite the guilt, I cannot force myself to clean the house, fill out the mountain of paperwork, or do any of the other million things that are on my list. During the week,  I drag myself down to my office log on to my computer and force myself to respond to emails, write documents, and continue to stumble through my professional day.

I felt the perfect storm brewing so I went to my doctor and began anti-depressants and anti-anxiety medications at the beginning of the summer.  I started the meds just in time, my mood and energy level plummeted just as my stress level soared.  Perhaps the chemical imbalance is responsible for some level of clairvoyance.

I have a well established history with depression and anxiety.  At times, when I don't have the energy to move, I wonder if the depression is caused by the many challenges in my life or if the challenges in my life seem greater because of the depression.  When the depression sets in despite my best efforts the only thing I can see in the injustice that surrounds me. 

I laugh at my life whenever possible, I try to embrace the joy and wonder that surrounds me.  But there are days, days like today, when I can no longer muster the strength to try and convince myself that I am just tired or that I will get a break soon.  I am physically and emotionally exhausted.  Many activities I used to find enjoyable are now a chore. 

But You Don’t Like to Be Touched

I tried to choke back tears but when that was no longer possible, I sobbed quietly to myself.  In a matter of seconds John paused the movie. “What’s wrong?” he inquired.  We were watching “Temple Grandin” which chronicles the life of its namesake “an autistic woman who became an unlikely hero to America’s cattle industry—and to autistic people everywhere,” as explained by the official movie synopsis.  We had just watched a scene where Temple’s mother was leaving her at a boarding school, when Temple’s mother tried to hug her Temple shied away and resisted. “It makes me sad and scared to think of a day when Caroline might not find comfort in a hug,” I managed between sobs.  And John’s response demonstrates one of the reasons I love him so, “Kacie, you don’t like to be touched.” Hmmm, he makes a good point, an obvious point.  I proceed to amend my previous statement, “Point well made. I guess what I am feeling is twofold: First, I don’t want Caroline to be in a constant state of angst about whether people are going to touch her; and second, self-interest, rightly understood, I want Caroline to find comfort in my hugs.”

This one scene led me down a path of introspective self-discovery that forced to the surface a new awareness that I had been suppressing.  I hoped that by exploring my intense desire for people to respect my personal space (with few notable exceptions) and the equally strong and antagonistic desire for Caroline to be comforted by my touch I would not only grow as a person but I would be better suited to provide Caroline comfort in a way that was meaningful to her.

Caroline currently loves when I hug her because I make hugging a sensory filled experience that involves throwing her in the air or swinging her between my legs. My fear of Caroline not wanting to be hugged or touched is rooted in the understanding that, “there is no single behavior that is always typical of autism and no behavior that would automatically exclude an individual child from a diagnosis of autism” but that many autistic people do not like to be touched. This fear is compounded by the fact that I don’t recall a time when Caroline has initiated or requested a hug. The best way I have learned to comfort Caroline is by distracting with her with a song or one of our many inside jokes.

When my ladies are hurt or sick my heart aches—with Vivian a hug or snuggling is a reciprocated act offering mutual comfort—this is not the case with Caroline. People with autism spend a lot of time in their own world, one of the diagnostic criteria deals with a decreased or inability to share joy with others.  Despite Caroline’s decreased ability to share her joy, she brings a tremendous amount of joy to everyone in her life. Caroline is infectiously happy, I can’t help but to be happy when she is around. I have decided that Caroline does not have a decreased ability to share joy but rather she just shares it differently. And if Caroline shares her joy by being infectiously happy, I should be able to find comfort in by ability to calm her regardless of means.

Do you think it is selfish that I am concerned that one day Caroline will not want to be hugged, especially given all that she deals with on a daily basis?  When I proactively worry about things like this, I feel like I am not only being selfish, but I am doing a disservice to Caroline by stressing about a problem that may never exist.

It Takes a Village

Becoming a parent is a self-affirming experience. When I became a parent not only did my priorities become apparent but I strived  to become the best possible version of myself. I believe this process was aptly described by Hillary Clinton in It Takes a Village, “Parenthood has the power to redefine every aspect of life - marriage, work, relationships with family and friends. Those helpless bundles of power and promise that come into our world show us our true selves- who we are, who we are not, who we wish we could be.” However, when one becomes the parent of a special needs child there is a parallel transformational process that occurs. For me this process, involved accepting that Caroline was medically involved and has special needs, learning that Caroline was "different but not less," and trusting myself and others enough to ask for help.

Asking for help has always been a challenge for me but during some of the darker moments in my personal life I have been overwhelmed by the support and comfort offered from others.  It is not my first inclination to ask for help but I have learned that the collective capacity of my village far surpasses my individual capacity, especially during a difficult situation.  When I learned that the insurance policy offered by employer specifically excluded any services under the diagnosis code of Autism, I was red with fury. But as a parent of a child on the spectrum I did not have the luxury to wallow in my fury instead I had to focus on solutions that would provide care for my daughter now.  I decided that I would use crowd-sourcing to try and raise the funds. I discussed this idea with my husband, John.  "If you think that is the best way to provide Caroline with the therapy she needs, let's do it." But just as happened when I started this blog his reaction was the same, "I did not realize how much of ourselves we are sharing with others." John is a very private person and when we met I was, too. But overtime I have found comfort in sharing my story my others just as I found comfort in learning how others navigate challenging life situations.  John understands the therapeutic value of this to me and therefore is willing to give up a little bit of privacy for may sanity.

When we decided we would use crowdfunding, Giveforward to raising funds for Caroline's therapy, we knew the fundraiser had to be short because we needed the funds to start the therapy. Two weeks. We figured a short break from therapy would not be the end of the world and if we raised for funds for two weeks, we would receive the funds within a month and could start therapy soon after.  I cannot tell you how overwhelmed we were by the kind and generous support of our village. So many people donated funds and even more helped us spread the word about Caroline's fund.  Not only will the funds raised help provide Caroline with the much needed therapy but it also reminded me of the kindness and generosity that surrounds me on a daily basis.  It also demonstrated what a lasting impacting John has had on the life of so many of his students--their kinds words brought me to tears. I know my husband is an amazing man but to see what he means to so many students warmed my heart.  I honestly do not think there are words to express how humbled and thankful John and I are for the outpouring of support.

And while, I have spent a lot of time speaking about the support we received during our recent fundraiser, I want to be clear our village is much larger.  To Chris, Michelle, Dawn, and my parents all who dropped everything on at least one occasion to watch Vivian while we rushed Caroline to the hospital; to my dad for spending nearly 7 months in Chicago caring for Caroline because no schools we could afford would accept a child with a feeding tube, to Lizzie for being a wonderful and amazing date night babysitter for our ladies, to all the therapists who have helped Caroline develop the skills she needs to manage or overcome some of her challenges and to those same therapists for providing me with the encouragement that I needed during some of the difficult days; to Montessori Learning Center of Edison Park for not only accepting Caroline as a student but as a person and for working with us to provide Caroline with an education that was appropriate for her; Caroline's first teacher who knew how to challenge Caroline with overwhelming her; to John's mom for caring for the ladies during two cross country moves and for always looking for ways to be helpful, to Kristen for being the MOST amazing nanny, teacher, therapist, friend, and new member of our family (our Howie); and again to Dawn--for everything. I know I have missed many, many people.  But please know we appreciate everyone who has helped us along the way. And to those who I have been short with please accept my apologizes, l try every day to give everyone the consideration I would like but some days I fall short.

So I started with thoughts about parenting from Hillary Clinton and I would like to end with thoughts about life and seeing the good in every situation from Mr. Rogers, "When I was a boy and I would see scary things in the news, my mother would say to me, "Look for the helpers. You will always find people who are helping." To this day, especially in times of "disaster," I remember my mother's words and I am always comforted by realizing that there are still so many helpers – so many caring people in this world." Thank you all the helpers.

Thank you to everyone who is part of our village.

Thank you, Cigna

I just received confirmation from our good friend, Tim, at Cigna that ALL of Caroline's speech therapy needs will be covered on an in-network basis for the balance of the calendar year, with no additional requirements! Caroline is pleased with the result of my efforts!!

Here is the email from, Tim!

Good Morning Kacie,

I received an update this morning for Caroline's speech therapy. Your employer has approved all speech therapy services to be processed in-network at billed charges for Caroline effective August 15, 2013 until December 2014. You can go ahead and make an appointment with a speech therapist of your choice! I have documented all of the information under Caroline's account. I will be leaving the office this morning until 11:00 p.m. ET, but if you have any additional questions or concerns, please feel free to e-mail me and I will get back to you as soon as I return. Have a great day!

Tim

I texted Tim's email to John and with a note that says, "why you love me." John responded, "I love Kacie and Tim a little."

I am over the moon happy, right now!!!

A Successful Mother

Motherhood has been one of the most enlightening experiences of my life. The time I spend  trying to prevent the ladies from picking up my bad habits is substantial. Yes, I am working I am actually getting rid of the bad habits myself; but sometimes, it is just easier to hide the Peanut Butter M&Ms in my office or to turn up the radio in traffic so they can't hear the my choice of words. In addition to pointing out my many faults motherhood has also taught me many lessons. Perhaps, the most important being that happiness is not found it is created and it comes in many forms.  Caroline had and has her fair share of challenges but she is happy and content.  I don't think I have met anyone with a better disposition than Caroline. Her greatest joy in the world is looking at and talking about frogs, for the most part if someone takes something from her she walks away, and she diffuses intense situations with laughter.  Is Caroline happy because her autism prevents her from caring what other people think or is it because she creates her own happiness and invites others to share it? I like to think it is the latter.

Tonight I spent a few moments thinking about what would make me a successful mother.  I decided I would be consider myself a successful mother, if my ladies:

• Understood that happiness is not found, it is created,


• Know when to stand their ground and when to back down,


• Realize the wisdom that comes with saying, "I don't know",


• Act with kindness and understanding-for you never know what someone else is dealing with,


• Value and act with intention,


• Have a firm handshake and warm smile because a first impression only happens once,


• Embrace the love of learning more than the joy of "being right",


• Can change a tire but know when it is better to call AAA,


• Value friendships, and


• Know how to approach a stressful situation with logic and grace.

What would it take for you to consider yourself a successful parent?