Supporting Siblings of Kids with Autism: Lessons Learned
July 15, 2019
1 in 59 are diagnosed with Autism Spectrum Disorder, according to The Centers for Disease Control. What that number doesn’t reflect are the countless others who are impacted – moms, dads, caregivers, aunts, uncles, and, a group that can easily be overlooked – siblings.
For brothers and sisters of those with autism who are old enough to understand, the diagnosis can be confusing; an age-appropriate explanation can be a challenge, not to mention all that follows. And regardless of whether a sibling learns of a brother or sister’s diagnosis years into his or her childhood or the diagnosis pre-dated that sibling’s birth, Autism will shape the story of every person who loves someone with this neurological disorder. Siblings may need to learn what “ABA” means years before they’re old enough for a psychology class – or they may need to understand sign language long before they’ve taken a foreign language course. They may need to get a training on how to reach out to first responders if their brothers or sisters elope – or understand how to manage a meltdown in a public place. In many cases, siblings of people with Autism take on greater responsibilities than their neurotypical peers. They also tend to be wise and compassionate – far beyond their years.
Siblings of children with autism learn that the ability to communicate is a gift – and that forging a connection with another human sometimes doesn’t require words at all. They learn that the opportunity to attend traditional school – or the prom – or to drive a car, is not something everyone gets to experience. They develop a spirit of gratitude because of this heightened awareness. And through their siblings, they learn that people with developmental disabilities have special strengths, talents, and qualities that will enrich life for every person in their path.
Moms and Dads of those siblings, of course, have a unique situation at hand as well. While “optimizing the quality of life” for their child with Autism (the mission statement of our son Joey’s full-time residential program, Anderson Center for Autism), they are keenly aware – every single day – that they also need to optimize the quality of life for their other children.
It’s not an easy path to navigate – and although we are years into this journey and are still very much “works in progress”, here are some tidbits that might be helpful to parents trying to figure it all out:
When they were very young, I invited my children’s friends over to the house frequently. I specifically tried to arrange playdates at my house so that I could expose Joey’s siblings’ friends to him early on. Not only did I feel this would help demystify the concept of Autism, but I felt it would help Joey’s siblings enjoy some “normal” socialization opportunities, and in turn, help those friends understand the importance of inclusion.
Because Joey’s needs were so great, I tried to make a point to spend time alone with his siblings. I tried to encourage them to let me or Dan know if they were feeling left out & needed some special time with us. This open line of communication allowed us to keep ourselves “in check” as we filled our days with appointments, therapy sessions, and phone calls for Joey. And I believe Joey’s siblings felt that they could open up to us when they most needed to do so.
I emphasized regularly that Autism would help all of us learn patience and empathy – that it was our collective learning opportunity, and a chance for each of us as individuals to take our story and use it to serve the common good. I believe that their compassion and sensitivity has made them kinder human beings.
I let them know that Joey was a great “gauge” for others. If their friends showed interest in Joey and took the time to give him a little attention or to get to know him, it showed character and open-mindedness. These were the kinds of friends they should try to surround themselves with – the kind of people they should always seek out throughout every stage of life.
I told my kids that their job as role models is very special and unique because their behavior could have a tremendous impact on Joey’s growth and development. Research has shown that children with autism learn the most from their siblings. Everything they model, everything they do and say, could have an extraordinary impact. I think that through their own experience with Joey, they’ve learned that every interaction in life counts.
When we took family vacations, I always chose destinations that catered to families like ours. This afforded time for Dan and I to be present for Jackie and Aidan while Joey was enjoying activities with specialized instructors. It was a win for everyone.
And when it came to residential placement, the most difficult decision we had ever faced, I explained to Jackie and Aidan why it was needed. I explained that one day their own families and friends will be able to spend quality time with Joey – real quality time – because Joey was happier in an atmosphere designed to maximize his potential. I also talked with them about the extended family they’d gain through Joey’s caregivers at Anderson Center for Autism. Today, they’ve learned that sometimes the most impossible choices can have the best outcomes if we take that leap of faith.
Today, not only is Anderson Center for Autism optimizing the quality of life for Joey, but as parents, I can honestly say we continue to do all we can to optimize quality of life for his siblings.
And ultimately, Jackie and Aidan will no doubt optimize the quality of life for everyone in their path, thanks to the lessons and the character they’ve developed as a result of being impacted by Autism.
Let Freedom Ring
June 30, 2019
My concept of freedom has clearly changed over the years. I started out like any child does, wanting freedom at some point from being told what to do. I understood at some level that I had the freedom of living in America; my parents made this very clear to us at an early age. During the sixties there were assassinations: John and Robert Kennedy, as well as Martin Luther King. The Vietnam war broke out and there was starvation in Biafra. We were brought up to be grateful for everything we had. “Eat your dinner - children are starving in Biafra.” Going to school, meeting new people, gaining new perspectives, changes in my family structure, going off to college, working, dating, marriage, parenting, aging, retiring - each new chapter has changed my view, my perception. I think we can all agree as human beings that freedom means having choices. Whether we have choices or reject the choices we are given - it is a fluid concept. Freedom without direction, however, isn’t an optimal state of being. I realize that now by looking back on my journey.
The funny thing about freedom is you get to the point where, in my case, the college years are over, and the career begins, and you think to yourself…...freedom at last. To a certain extent I really did feel that way about teaching at first. I knew my subject and I wanted to have kids really love biology. So the kid part of teaching is great, and for a good 15 years I really felt that I could be creative, and put my own spin on education. I am not sure when the big shift came, maybe it was the internet and the ability to electronically keep tabs on workers, but the pendulum swung back to a more rigid paradigm. If everyone (teachers within a subject area) wasn’t all doing the same thing, then the students would “miss out.” To some extent this may be true, but I did not go into teaching to be a formatted robot. My intellectual freedom was a challenge. I managed to do what I thought was best even under these circumstances, but at times I felt “punished” and not a “team player”, because of the lack of want other educators had to stretch themselves. So, I did what any caring teacher does: close the door to my classroom and teach the way I wanted. This is how I managed to keep my sense of freedom as an educator. On that note, I was raised by two educators that - if I dared complain about a teacher, which I’d seldom do - would school me on the facts of life. They would tell me that life is filled with all sorts of people. Some you will like and admire, and some not. They were right. The experiences I had with great teachers and not-so-great teachers enabled me to deal with certain personalities I would come across - during my teaching career and life in general. They would say, “What makes you think you are going to like everyone in your life?” There is a sense of freedom just in knowing that.
Getting married and having children yanks at that freedom and pulls you down underwater sometimes, while you scream to yourself, “I don’t want to compromise, no I don’t!” And I won’t. What are the choices then? Leave, a very complicated ordeal. Or go to therapy, which I did, for over 20 years. Make no mistake about it, therapy can be the most freeing string of conversations a person can have. Think about it. You are paying someone to listen to your drama, your pain, your innermost thoughts, thoughts that you have locked up because way back when you decided to be “the good girl.”
Having the boys clearly put my freedom on hold. All children do, but raising special needs children is a whole other ballgame. There is a mourning period - death of a normal life - whatever that means, but with one, then two, the mourning period shortened as we tried to figure out what to do.
Autism. After 25 years in, the struggles, the joy in small gains made, have transformed me as a mother, not to mention made me a more inclusive educator. Our Matty, a 20-year-old young man with autism, will be entering his last year at Anderson Center for Autism, where he has spent almost four years in the freedom of a safe and secure environment that has allowed his independence to soar. Next year Anderson will ready him for the transition into an adult placement, a forever home, there he will continue on his journey towards freedom. It is freedom with direction, the best kind. For this I am eternally grateful.
An old friend sent me an email about a month ago, all excited about a homeopath that might ”cure” or reverse autism. Both of my boys have been seen by a homeopath early on in their development, as I looked for alternative means by which to “save” them from autism. I looked at that the email with a new sense of freedom. The new sense of freedom was to let my children, who are now young men, be who they are, and to stop chasing unicorns. Of course I checked out the site, which made all sorts of promises, and began what would be a very short, “online” chat with a “specialist.” As I probed the specialist with questions about the treatments, the return comment seemed to be the same….. You need to see this man for your son. Again, wow. What a revelation. I simply hit “delete.”
Finding the courage to let go of expectations when it comes to my sons is still a struggle; we all want the best for our children. When I am able to do so, I thank them out loud. It has taken me a lifetime to come to this place, but I am grateful. The serenity prayer says it all.
Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. [Niebuhr]
Let freedom ring.
Autism: Through the Lens of a Sibling
June 27, 2019
Today, I share the sentiments of my son Cam, whose brother Owen now lives in a full-time residential setting at Anderson Center for Autism in the Hudson Valley region of New York. It’s been quite a journey for our entire family, and as a parent ambassador for Anderson Center for Autism, I feel it’s important to shed light on what siblings experience. To say I’m proud of all my kids is an understatement!
Here, Cam’s essay, to give you a sense of the unique perspective of a sibling to someone with Autism:
My sister graduated in 2011, I graduated school in 2016, and my brother, who is the youngest in my family, graduated in 2012. You may ask how could this be. My brother left the house before I did to attend a school that would help improve his quality of life and teach him what he could not learn at home. This became his new home. He learned how to socialize more, and his new teachers taught him new skills that we were not capable of showing him. Owen went to live in a house with other kids just like him. This was very difficult for my whole family. In particular, I had trouble adjusting to Owen’s departure because I felt I should have been the next one to leave the house. Realizing that Owen was never the cause of the trouble gave me a sense that I needed to start maturing and become a responsible person.
My brother Owen has autism. Owen has always been our primary focus. We all worked as a team to make sure that he was not upset, that he had his bagels, and that he had his iPod. When Owen lived at home, we were not able to focus on other matters happening in the family. We had to focus only on Owen’s needs. The first time we went out to dinner after Owen left, we fought over the tiniest things that should not have mattered. My sister said, “Maybe we can’t function as a family without Owen, because we are always focused on him.” And it was true. It became clear to me at our first dinner without Owen, the family needed to learn how to become a family again. When Owen was around, my family never had time to interact with each other. We did not know how to be nice to each other or even talk to each other. Now, we had to enjoy being a family without Owen. We thought that Owen was the tough issue because of his struggle with autism but a bigger issue was that the family did not cooperate as much when Owen was not around.
With Owen’s absence, my family needed to learn how to reconnect like a team again. We needed to learn how to achieve new goals, take on new challenges that did not involve Owen. Occasionally we tried new activities as a family that we could not have done with Owen around. Now, I can work longer hours, join the volunteer fire department and spend time with others; I was not able to do much when Owen was around but now I can.
However, even though Owen is no longer around, I still want to stay connected with him. That is a continuous challenge for me. Whenever the whole family goes upstate to visit him, I’m always glad to go along because I love seeing my brother. We always go to Rhinebeck and get pizza. When it’s time for us to head back home, we drive Owen back to school. I walk close to Owen and he always grabs for my hand to hold and I hold on to his hand. I give him the biggest hug I can ever give to him, when it’s time to say goodbye. Realizing that Owen wasn’t the cause of our trouble made it clear to me how the world works, I started to mature into the person I need to become, which includes but is not limited to being a brother.
Village of Rhinebeck takes steps to become supportive of people with autism
The Daily Freeman
Jun 22, 2019
When you think about autism, says Kathy Kollar, whose 19-year-old son Owen is autistic, don’t think about "Rainman."
The popular film, in which Dustin Hoffman plays an autistic savant, doesn’t portray the typical experience, Kollar said.
“My son is minimally verbal,” she said. “He can have meltdowns.”
That is what the village of Rhinebeck’s recent transformation into an “Autistic Supportive Environment” is all about.
Sound-reducing headphones that Rhinebeck Police can use to calm a person with autism who might be agitated and "Burt," a soft rubber doll that can also used to calm an autistic person.
Since 2011, the Anderson Center for Autism, located in nearby Staatsburg, has been helping businesses become autism-supportive environments. In part, that means learning about the special needs of people with autism, and changing environments to ease the lives of people with autism and their families.
For example, according to Eliza Bozenski, chief development officer at Anderson, florescent lights, which sometimes buzz and flicker, can be a problem. People with autism, she said, “can’t zone it out. It may be uncomfortable or even painful.”
To become autism-supportive, the business simply might change florescent bulbs to softer lighting.
According to statistics from the Centers for Disease Control and the support organization Autism Speaks, one in 59 children is diagnosed with autism spectrum disorder. For boys, the numbers are higher: one in every 37. Of these, 31 percent have an intellectual disability and an additional 25 percent are borderline. One-third of people with autism are non-verbal.
Life can be difficult for families as well as for people with autism, said Kollar, who talked about the problems of going out together
“Owen had a major meltdown,” she said. “People were staring. We were embarrassed.” But the more information that is shared, the more people know, the less the stigma, she added.
In November 2018, the Anderson Center approached Rhinebeck’s village mayor, Gary Bassett, with a novel idea: How about making the entire village autistic-supportive?
“It took me literally three seconds to agree to work with them on this initiative,” Bassett said. The mayor went on to assemble a committee to launch the project.
Dutchess County’s “Think Differently” initiative endorsed the project, and the Thomas Thompson Trust awarded a $10,000 grant to help.
By June, more than 44 businesses and organizations had committed to “Do One Thing” to make the village more autism-friendly.
At Village Pizza, families with autistic children don’t wait; they get priority service. “I’ll pass up three or four people to take care of a table with an autistic child,” said owner Al Mazzella, who added that autistic children can get “antsy” when they have to wait.
Aba's Falafel is creating a menu with pictures. Ruge’s Automotive will offer a “sensory safe space” during an upcoming village festival. And the village has equipped all police vehicles with “sensory kits,” a package that includes headphones and soothing tactile objects.
“The kits have already been used a half-dozen times,” said Bassett. He added that fire trucks will turn off lights and sirens if they know an autistic person lives in the area to which they’re responding.
“This has just been fantastic,” Bassett said. The next phase is to reach out to the entire town of Rhinebeck, he said.
Anderson Center graduates celebrate accomplishments
June 21, 2019
The moment, as Courtney Cross put on her cap and gown, was bittersweet.
She was excited to graduate from the Anderson Center of Autism's education program, but finishing also meant moving on.
Yet after the ceremony, surrounded by family and loved ones, that doubt melted away.
"I'm so proud of myself and what I accomplished," she said.
Eleven students graduated during the Anderson Center for Autism’s 95th commencement ceremony Friday afternoon.
The excitement for the ceremony was palpable, with students eager to receive their diplomas.
"Year after year, our graduation ceremony is a heartwarming experience for everyone involved," said Patrick Paul, CEO and executive director at Anderson Center for Autism. “It is an exciting moment in time for each of them, and of course it is also a very special day for their families and staff, who have provided unwavering support and encouragement every step of the way."
This year's celebration was particularly unique, as it marks the first time graduates decorated their caps. Their individual interests were highlighted on each cap, with scrabble pieces on one and characters from "Aladdin" on another.
Andrew Dease, principal at the Anderson Center, said the ceremony served as payoff for everyone's hard work.
"Many of the parents, after first getting the diagnosis for their children, probably couldn’t have even imagined this day would come," he said. "And when it does, the emotion we see is incredible."