How My LIfe Benefitted from Aquatic Therapy: An Adoption Story

Today’s Voice of the Arc is Sandy Karlek, a mother of three who is certified in Aquatic and Exercise Therapy. She is co-owner of Nurturing Water Therapies, LLC and is excited to share her experience helping her adopted daughter with special needs develop confidence and strength in the pool. 

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How My Life Benefitted from Aquatic Therapy: An Adoption Story

From an early child I grew up alongside the pool. As a child I couldn’t get enough of the water. I joined dive teams, swim teams, synchronized swim teams, swim camps, and at age 15, I got my lifeguard training certification. I taught swimming lessons all through high school and college. After college I became a Recreation Director for a large retirement community with… a pool! I worked side by side with physical therapists and physicians to develop aquatic exercises for the residents because the pool was a safer environment than land.

Years passed, I got married and decided to adopt children and began a family. Shortly after we adopted 2 school age boys from Ethiopia, we began the process of adopting a girl. Six months later we got a message from the orphanage director in Ethiopia: an 18 month old was left on their doorstep. She was very sick, severely malnourished and needing immediate medical assistance. They didn’t think she’d survive much longer in Ethiopia and their government was willing to expedite her adoption so she could come to the States to receive the care she so desperately needed. We signed the papers and headed back to Ethiopia not knowing what was in store for us.

At 22 months, our little baby girl came home. With a chronic fever of 104, febrile seizures, severe ear infections in both ears, giardia, pneumonia, strep throat, scabies, intestinal parasites … and the list goes on. She was 16lbs, and could barely sit upright on her own, let alone walk. She had the muscle tone of an infant. She was nonverbal, unable to even babble or mimic the sounds around her. Immediately we had PT/OT in home care daily as well as speech therapy and ongoing medical visits from a team of doctors. For a while I felt helpless. I desperately wanted to help my extremely fragile baby. So I did what I knew what to do – teach her “how to swim”. And so began a new chapter in my life.

I had previously taken infant aquatic yoga classes for my 3-year-old son (who was only 18lbs and severely malnourished himself) but I needed to do more for my daughter so I researched different techniques and ways to strengthen her muscles. I needed something to help with her poor postural control, balance, coordination and eventually, gait.

I was amazed at how much progress she made. She took her first steps in the water. She learned the basic concepts of crawling, reaching, turning and retrieving in the pool. The best part – she loved it! The water gave her confidence and me the reassurance that her strength will improve. And it did.

Beyza swimming jun1510 years have passed. My daughter is nearly 12 now. She continues to have cognitive and speech delays, but her gross motor skills are equal or better than her peers. She is turning into a beautiful young lady before my eyes!

Through my daughter I found my passion in life: to help not just children, but anyone who is health challenged, early or later in life, to feel better and have better quality of life through adaptive swim lessons, aquatic therapy and aquatic exercises.

An Army of Special Needs Moms

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Today’s Voice of the Arc is from Rachel Nemhauser, an Outreach and Advocacy Coordinator at The Arc of King County. Rachel recently joined the staff of The Arc, and she is a parent of a child with a disability, too. 

The first time I when out to dinner with a group of parents who have children with disabilities I was actually surprised to notice the moms were smiling and laughing.

After three draining, difficult, traumatizing years of raising Nate I had assumed my days of silliness, fun and friendship were officially over. I imagined my future held only sad, stressful, desperate get-togethers with other sad, stressed out, desperate parents like me.  Seeing that I might smile and laugh with friends again – that I could laugh at all with a disabled child at home – pretty much changed everything.

For three years Nate’s delays had slowly revealed themselves, one after another, like ants from a hill. First he was late to crawl, then to walk, then to talk. His play skills were behind.  His adaptive skills weren’t emerging. His behavior and social interactions were challenging. There was no name for what he had and no explanation for his delays so I spent three denial-filled years trying desperately to believe he would catch up.  I was not the parent of a child with special needs, I told myself daily.  I’m not meant to be this.  I don’t want to do this. And since I was determined to not be the parent of a special needs child, it was obvious I didn’t need the support that actual special needs moms needed.  I didn’t need to connect with other moms and I didn’t need help because this was temporary.

Except it wasn’t temporary, and Nate never caught up.  After three years I finally came to some level of acceptance and admitted to myself that I needed support.  Thanks to the invitation from a friend, I decided to attend a Mom’s Night Out with a group of moms of children with disabilities.  Expecting a prolonged venting-session complete with whining, tears and miserable desperation, I was surprised to find a group of moms who, like me, were excited to be out to dinner with other grownups! They were cracking jokes, bragging about their kids, and giving advice about behavior problems. They were updating each other on life events, medical procedures and marriage woes. They were recommending good doctors and dentists, and even hairdressers familiar with working with our extra-wiggly kids.

That night I shared the most exciting news in my world: At three years old Nate had recently said “mama” for the first time. To a group of moms of typical kids this is happy news, if not a little surprising. To this group, it was time to celebrate.  They understood what “mama” means when you’ve waited three years to hear it. They cheered me on and celebrated Nate’s accomplishments as only they could. In short, they “got it” and it felt so good.

From then on connecting with other parents became crucial for me. I needed to check in regularly with this army of other parents. They were part of my new life and were where I turned to find the support, insight, perspective and humor that I couldn’t always get from the rest of the world. I needed to learn from those more experienced than me, and eventually I needed to support new moms who are where I was 7 years ago.

Today I no longer resent thinking of myself as a parent of a child with special needs. I don’t know if I was meant to do this, but I do know that I can do it. And I’m grateful for those laughing moms from so many years ago who showed me with their smiles that my future would still be joyous and full of laughter.                

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Parent to Parent at the Arc of King County is here to help connect parents to resources, information, and most importantly, other parents.  Contact Rachel at Rnemhauser@arcofkingcounty.org or call 206-829-7046 for more information.

Memorial Day Reflections

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On Memorial Day, our nation shows appreciation to those who have died while serving in the U.S. military. We want to thank everyone associated with The Arc of King County who has lost a loved one serving in the military. These parents, children, sibings, cousins and other family and friends made the ultimate sacrifice while showing patriotism for their country. And while many people are preparing for the three-day weekend with family and friends, we want to take this moment to reflect on those who have lost their lives in military service and share our sincere appreciation.

Functioning Labels Hurt our Community

This blog post is written by a member of our community, Ivanova Smith, who is an intern at The Arc of King County. She is a self-advocate who is passionate about civil rights and disability history. We welcome other members of the community to share their blog ideas with us. 

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I hate functioning labels. They do not accurately show what struggles and strengths people with I/DD have and what they have overcome so far. I believe that functioning labels are pointless in regards to autism. As an autistic person I hate it when people immediately assume I am “high functioning” because I have a certain level of ability. When I am given that label it doesn’t acknowledge what I have done to reach this point. The label ignores the hard work I’ve done in order to grow. Instead it assumes that I was always “high functioning” when that is simply not true. I did not learn to speak until I was five years old. I had meltdowns almost every day in school and the teachers didn’t think I could learn how to read. My mother worked with me to learn how to read because the school gave up.

Functioning labels are also problematic in the I/DD community because they separate people with various disabilities from each other. These labels divide us into different boxes, and this makes it hard for us to choose how we want to be supported. It takes away the civil rights of those who are deemed “low functioning’” as if they can’t make their own choices. At the same time, those who are deemed “high functioning” are turned away for needed supports because their IQ is not low enough. This is not good for our community because it separates us and makes it so we can’t be seen as equal.

I experienced the unequal difference myself while in junior high and high school. The special education program separated the “high functioning” students from the “low functioning” students. I was put into the high functioning classes. This made me confused, and I did not get to fully connect with all of my fellow peers. I did not get to unite with my community, and I could not be with the people I related to the most. This separation from my peers also made me more vulnerable to bullying because I did not have any extra protections.

This separation did not provide students with an equal education. One of my friends was put into the “low functioning” class, so he had more protection and support, but his access to educational classes was limited. Because of my label, I had more chances to get into regular academic classes like history, while my friend had fewer choices and options.

Now that I’m out of school, I struggle to get support services because I am deemed “high functioning”. This is challenging because even though I am independent, and I am married, I still do need support. Because I don’t qualify, my husband must provide a lot of additional help. I can’t cook because I have poor depth perception; I have difficulty with the fractions involved in measuring; and I also struggle with the sensory issues related to cooking. I also need support for transportation because I can’t drive. I mostly rely on mass transit or my husband for local travel to work and appointments. And even though I am 26 years old, I still have meltdowns.

Just because I can do something, that does not mean I can do everything. And just because I can do something, that doesn’t mean that everyone with autism can do the same things. People who are deemed, “low functioning” can do some things I can’t do. It has nothing to do with limitation, but more to do with difference in skill. I am a verbal autistic; but I know nonverbal autistics who are smarter than me and who can write better then me. Nonverbal people have been underestimated for a long time and their education has suffered because of it.

The I/DD community needs to come together and say no to functioning labels because it hurts all of us. I get mad at autistics online that throw people with learning/intellectual disabilities under the bus. We are all part of the same community so there is no reason to attack one another. In many ways, I think that functioning labels has actually caused this issue.

As those who know a bit about me are aware, I’m a historian who is passionate about the evolution of our community. Historically, the institutions used functioning labels to group individuals with disabilities together. They used “moron” as what we call high functioning. “Imbecilic” indicated a medium level of functioning, and “idiot” referred to low functioning. I find it funny how people are upset about using the r-word today, but people still use these other words without blame.

In the late 1800s and early 1900s, people with I/DD were labeled this way to dictate where people could live. Morons were still supervised in institutions but they could move more freely and had more work duties; imbeciles were more restricted; and idiots had the most restrictions and least opportunity. Additionally, one of the punishments in institutions was to put morons who broke the rules with the idiots as a form of humiliation. This forced people who were labeled as morons to fear the other people with disabilities who were labeled as imbecilic or idiots. These labels allowed the people in authority to create a pecking order that put us against each other.

This is one of many times in the history of our country that we’ve been divided from each other as a form of oppression. During the Civil War, slaves who had lighter skin were treated differently from slaves with a darker skin pigment. Instead using functioning labels, skin color was used to split the community and make those with darker skin resent those with lighter skin. Functioning labels have divided people with disabilities just as skin color has been used. The labels separate us into groups, thereby making it difficult for certain groups to get services. I think that all people with I/DD should receive the supports they need without the use of a functioning label. Every individual has unique needs, and an assessment of that person should drive service availability. We need to be inclusive for everyone with an I/DD, not just the “high functioning” individuals. We need to value each person equally.

Unfortunately, some people talk about inclusion but still want to separate us based on perceived abilities. When people talk about inclusion, it often sounds like they are only referring to “high functioning” people. They seem to think that self-contained class rooms are still okay for low functioning individuals. These people discriminate based on one’s ability to communicate verbally or on different modes of learning and expression. Inclusion should be for ALL people with I/DD.

Can you imagine a world where I/DD students are fully integrated in classrooms everywhere? I can’t wait until that day comes! It is time to get rid of the labels that support ableism, segregation, and other barriers to equity that truly hurt our community. Real inclusion includes ALL of us.

Guest Blog: Nothing About Us Without US

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Today’s guest blogger is Ivanova Smith, an intern at The Arc of King County, and passionate self-advocate who enjoys speaking out about disabilities. She recently was the keynote speaker at the 8th Annual Living Our Legacy Luncheon, and she regularly shares her insights in The Arc of King County blog. Ivanova has autism, and today she wants to share her opinions about the difference between awareness and acceptance.

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In honor of autism acceptance month I wanted to share my thoughts on the difference between autism awareness and autism acceptance. Autism awareness is what has been done in the past. It different from autism acceptance which is what we want this month to stand for.

For a long time autism awareness was control by the influence of a few autism organizations that claimed to be for autism, but they didn’t allow the people with autism to speak. That is a big problem. Organizations that say they want to spread awareness but do not want involvement from the people in the autistic community are not being honest. The people who are directly impacted must be included.

When I was in high school, I had deep depression because I did not know why I was the way I was. When I would see the ads for autism awareness it made me scared of autism. It made me not want to identify with it. It made me feel like a burden, and unwanted by the world. It made me want to hide who I was, triggering me to have very low esteem. It made me self-hate.

The messages from these organizations did not make me feel wanted or appreciated. I watched a documentary video, “Autism Every Day” and it made me feel sick. Parents complained about their autistic children, saying how much of a burden the children are. One parent wanted to drive off a bridge with her autistic child. Because of campaigns like this, the representation and reputation of autistic people has been damaged. It makes us look like unwanted burdens who break our families apart. Autism is presented as a monster that steals a child’s soul. I want to say this clearly. I am autistic, and my soul is still here. Having autism does not mean that I am a monster.

What are these messages teaching to autistic youth? That our lives don’t matter? That we are monsters? I’ll tell you what the message of that video said to me. I am undeserving of love. The parents in the autism ‘awareness’ videos needs to understand that their children hear what they say, and they understand.

The rate of autistics experiencing mental illness such as depression and anxiety is high. I believe this had something to do with it. Many autistic adults probably have low confidence and depression because of these messages we have heard from society, in the media, and in our homes.

I believe that it should be different, and people like me, people with autism, can help change the situation. Organizations that represent autism need to listen to the individuals whom they serve. These organizations need to find out what autistic people want and then advocate for those solutions with us. I only want to be involved with organizations who want to have  people with autism involved as active participants and as leaders.

Do you realize that some of these awareness organizations do not include people with autism in their leadership? How can you lead an organization without including those people at the table to make decisions? It is like a group of men creating a women’s awareness organization – but leaving out the women! The voice of the people represented by the organization must be included. Anyone who really wants to help people with autism must include us. Nothing about us without us, as the old saying goes.

I support organizations that are passionate about showing autism as a natural part of the life, organizations that believe I am not a burden. The Autism Self-Advocacy Network (ASAN) is run by autistics. People First of Washington is a self-advocacy group for people with intellectual and developmental disorders, which includes autism. The Autism Women Network helps spread education about autistic women, and it also led by people with autism. And of course, The Arc helps people with autism get the support they need to live, learn, work, and play in our community. Several other organizations are beginning to realize the importance of self-advocate involvement, but we need to educate every organization about including people with autism.

So I ask – are you part of an organization that spreads autism awareness or autism acceptance? Do you see any people with autism on the board? Do they have autistics speak about issues, or do they depend on non-autistics to speak? If you don’t see anyone with autism involved in the leadership and promotion, then talk to the organization about having our voice be heard. If you see a negative portrayal of people with autism, tell them it upsets you and you want them to stop. If they ask you to wear blue for autism awareness, but they don’t include autistics in their decision making, then wear yellow or red or any other color you want to wear. If they don’t listen to you, and if they don’t value your opinion, then please don’t support organizations like that. If they are talking about us, without us, then we can do without them.

In my book, April is about Autism acceptance and pride. Empower all of the children, youth, and adults with autism to develop their own voice and share their message with the world. Join me in celebrating neurodiversity by embracing the differences that make us unique and wonderful people with passionate souls.

Celebrating My Neurodiversity

Creative drawings from Ivanova Smith
Creative drawings from Ivanova Smith

– By Ivanova Smith, Intern at The Arc of King County and guest blogger

It never makes sense to me when people say that autistic people can’t be happy being autistic. Personally, I find great joy in being the way I am.

I love my neurodiversity, and I love that it makes me different. First, my autism makes me think visually which helps my ability to draw. (I’ve included a couple of my drawings with this blog.) I love the memories it allows me to see in intimate detail. I love when different textures make me feel happy. I love the passion it gives me to do what is right. I like my repetitive movement because they give me great comfort. I enjoy the times that I became so happy and energetic that I start jumping and my body goes spastic. I really love my life. I am blessed to be!

The thing that made me sad was knowing how people felt about me being autistic. During my childhood, I was happy being the way I am and had no shame in needing extra help. I actually enjoyed special education. In late elementary school I was a proud special education kid. It wasn’t until junior high that things changed. I have never forgotten the confusion I had when people started shaming me for being who I am naturally. People told me it was wrong for me to be in special education, but I liked being where I was I was comfortable. Society wasn’t okay with it, and I was shamed because they did not like it. That is what makes me sad. They made me feel shameful during junior high and in high school, and I had a hard time processing how I felt. Their shame led to my self-hatred and loneliness. I did not understand why I had to change when I was comfortable and happy being me. Deep inside I just wanted to be accepted.

Eventually, I discovered the neurodiversity movement which helped me realize that I didn’t have to feel ashamed. My happiness grew by leaps and bounds as I started to love myself again. I felt pride in myself again. I enjoyed my talents and the things that make me different.

I believe that schools need to make sure that students with disabilities don’t get shamed for being themselves. Every child needs to hear that they are okay being themselves. If I had known about neurodiversity sooner, I would have been empowered to feel better about my strengths, and I would not have dealt with such depression. Because of neurodiversity, I have the confidence to help do great things for the disability civil rights movement. Having autistic pride helps me see the good in myself and my passions. This is what gives me strength. Even when I have times of deep depression, God uses neurodiversity to show that I am valued. Being autistic is not something to be ashamed of. I am epic just the way I am. And so are you!

The Arc of King County enjoys featuring the thoughts, feelings, and ideas of people in our community who believe that inclusion includes everyone, especially people with intellectual and developmental disabilities. We hope you enjoyed reading today’s blog about neurodiversity from our intern Ivanova Smith. We invite you to submit your ideas for blog posts that mean something special to you. We especially encourage members of our community who have an I/DD to submit thoughts for future blogs. To have your suggestion considered, please contact Michelle Wilkinson at mwilkinson@arcofkingcounty.org. 

Guest Post: Great Expectations – Establishing a Healthy Relationship Between Parents and Children with I/DD

By Ivanova Smith
The Arc of King County is delighted to provide learning opportunities to interns and volunteers. Today we invited Ivanova Smith, one of our dedicated interns from Outreach, to share her thoughts about expectations. 

Expectations, they are a great thing to have and can help people plan their future. Lots of expectations were put on me in my life. Lots of them reasonable and helpful. But some of them are not helpful at all. When expectations are too high it can be emotionally damaging to those who try to live up to them. This is especially true for people with I/DD.  But not having any expectations for us can be just as harmful.

For example parents that have children with I/DD may have the idea that their children with disabilities will always be a child. So they try not to have expectations of that child to want to grow up and learn do things on their own. Instead they get stuck, and even when they became an adult physically, they are not treated with the same respect because they were never expected to grow-up. Of course, the problem is that we do grow up.

I wish more families understood this because the mindset that we are mentally stuck in a child-like mindset has hurt the I/DD Community for so long. In the eugenic era, it was used to justify imprisoning people with I/DD. We were segregated and told we were not allowed the same freedoms of adult American citizens. It is because of this mindset that babies of I/DD parents are more likely to be taken away from their parents because the government believes they can’t raise the baby.

It needs to stop. When negative attitudes and crappy old theories of mental age bar people with disabilities from their civil right there it is harmful. I want to encourage parents of children with I/DD to please consider how hurtful this theory is. It allows the government to take away our rights.

One of the greatest things my family did was to instill the idea that I had to take responsibility in my life. They expected that I was going to be an adult, and when that time came, they expected me to become independent. Now I am not saying that we don’t need support, because we do.  I just think that adults with I/DD need to be respected as adults. We need people to respect our decisions respected and allow us to have control over our lives.IMG_8493

I hate hearing stories of parents not allowing their adult children to have a say in their own income. This is not healthy or encouraging to a person with disabilities. In most cases it not intended to be mean, but it makes the assumption of no competence. If we want to help people with I/DD to gain equal access to community and have full civil rights, we need to teach them that they will grow up to be adults. We should help them plan for that future and teach advocacy and self-determination at an early age. Show them the Bill of Rights and teach them about disability pride. We are citizens and we want to be respected and seen as competent.

Of course, we also need to do it in a loving, accepting way. It not good to push the child to the point of meltdown. It helps if you work alongside your child. If they are having problems at first, help them with the issue. Try to make it fun and let them do at their pace. Don’t force high expectations without asking the child what they expect for themselves. Show respect for your child by asking them about their future desires. It is very powerful because you are showing that you believe in them.

My best advice to parents is to respect all boundaries, listen to your child’s needs and wishes, and never shame a child for having a limitation.  With these ideas in mind, you will create great expectations for your child to become an active member of our community as an adult.