A Mother’s Holiday Wish

December 17, 2013

As 2013 winds down, my heart is full of appreciation for the remarkable progress we’ve made at Erik’s Ranch & Retreats. I won’t outline the strides that have been made in building a home for adults with autism that will also create jobs for them that fit their skills, interests and abilities. Instead, this blog is a mother’s holiday wish for adults with autism.

My son Erik was diagnosed with autism at age 2. At that time, two in 10,000 children were being diagnosed with autism. Today, as Erik has cleared his 22nd birthday, one in 50 are diagnosed with it. That’s a huge increase, but it also portends a grim future for those children once they reach adulthood. I realized when Erik was young that this problem was not being addressed, and I needed to address it. The idea of Erik’s Ranch & Retreats began to form because I didn’t want Erik to be without options.

As a mother, I know my son would be angry and depressed if he were relegated to a life of menial tasks. I couldn’t bear that. So, I’ve been working since 2008 to create a place for adults with autism where they can use their abilities to work in a safe and supported environment that is also their home. But I want this possibility for more than just my son.

In my dreams, I envision an environment for adults with autism that offers them the opportunity to develop their skills and translate them into meaningful jobs. These adults would be at home with peers and guests who come to stay at our ranch in Montana and retreat in Minnesota. Adults with autism and guests will get to know each other, fostering integration of community members into the lives of adults with autism and vice versa. As the lines of friendship form, the lines of what we perceive as normal become blurred, and a new definition of normal can rightly appear.

Do you think my wish is a pipedream? I don’t. To paraphrase Walt Disney, “If I can dream it, I can achieve it.” I invite everyone to participate in this dream.

As Erik’s mother and CEO of Erik’s Ranch & Retreats, my wish for everyone this holiday season is that if you have big dreams, you set out to achieve them.images

Happy holidays from all of us at Erik’s Ranch & Retreats

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It’s no secret that once children with autism graduate from high school—50,000-plus individuals annually—they are less likely than their peers to find jobs. But more troubling is that peers with other disabilities—low IQs, learning disabilities and difficulty speaking and communicating—fare much better. Not only do they more often find jobs, they receive more pay, according to studies cited in a Health Day article.

Another study featured in the same article goes hand-in-hand with jobs. When it comes to living arrangements, “researchers found that only 17 percent of young adults with autism, who were between 21 and 25 years old, had ever lived on their own.” It does stand to reason, however, that without a job, adults with autism are without the financial means to live on their own.

The saddest thing about the results of these studies is that these situations do not need to prevail. The problem, in part, is that there are not enough programs available to help these young adults channel their many skills into acquiring meaningful jobs. But the good news is that some companies and parents are taking matters into their own hands. I’ve mentioned Specialisterne before in this blog. It’s the Danish IT company that only hires individuals with autism. An article in the San Jose Mercury News revealed that Semperical in San Jose, also, will exclusively train and employ individuals with autism as software testers.

But, again, we’re looking at jobs in information technology. Adults with autism have diverse skills. That’s where parents have stepped up. As the link to this article shows, parents realized they needed to create jobs for their children with autism. They are finding ways to help their children break away from the dismal results of these studies. The parents are creating jobs that play to their children’s strengths. These are the grass roots efforts that will make the difference.

Much the same as the parents in the article above, I have lamented that young adults with autism are passed over for jobs they are infinitely skilled to do because of communication and social difficulties. Like these parents, I was frustrated and decided to take the situation into my own hands. That was when I created Erik’s Ranch & Retreats and subsequently Erik’s Minnesota Adventures. But, I’m only one person and I don’t have all the answers. So many young people need our help, and in a concerted effort we can raise our voices and lend our efforts to accommodating the skills and abilities of these young adults. The learning curve for changing the way society views individuals with autism, the perspective of what is normal and how businesses incorporate workers with different abilities is a huge undertaking, but it’s a change that must be made.

It takes groups of like-minded and interested individuals to collaborate, plan and educate the entire country, while cottage industries may be the interim solution for adults with autism to find opportunities to lead lives of purpose and possibility. How to make the change is a conversation that must occur among all of us.

As we build the Minnesota and Montana locations for Erik’s Ranch & Retreats, the urgent need for safe, supported environments for adults with autism is undeniable.

Recently the Autism Speaks news site posted this news story: Fox News Looks at the Need for More Housing for Adults with Autism. Also contained in that posting was a survey that will help Autism Speaks “increase the support of both the public and private sectors to expand housing and residential supports opportunities for individuals with autism.” If you have a chance, go to the link respond to the survey.

I was saddened (but not surprised) by this quote in the Fox News article. “Approximately 80 percent of adults with autism up to 30 years old live at home for one reason—there is not enough affordable housing available, both the physical space and the appropriate supports,” Lisa Goring, vice president of family services at Autism Speaks, said.
The model we use for Erik’s Ranch & Retreats is one that not only offers a home, but also provides work and support based on individual need. More important, what sets this residential setting apart is that the residents will help run the operation. Both locations will offer guest accommodations and our residents will serve these guests as chefs, personal concierges, landscape architects, grounds keepers, whatever their passion.

As the communications director, I talk a lot about paying attention to the individual, not the diagnosis, and I believe with all my heart that this is the answer to helping adults with autism live rewarding and fruitful lives. Skills and abilities are latent in everyone, and everyone deserves the opportunity to explore theirs. That is our premise, at least.

The process for building what individuals with autism need is slow, but it is progressing, because more people are becoming aware of the problem. We are nearly ready to invite the first 13 residents to live in Erik’s Retreat in Edina, Minnesota. Funding, of course, is always an issue, but we work hard to find ways to garner financial support because the need is great.

Finally, I want to thank all of those who are helping to make the Erik’s Ranch & Retreats vision a reality. I hope that everyone who knows about our endeavor will pass the information on. More awareness, more support, more people who care will change the future for adults with autism.

 

As director of communications for Erik’s Ranch & Retreats, I’ve recently had an opportunity to coordinate volunteers to help renovate Erik’s Retreat, our facility in Edina, Minn. Volunteers help with some pretty physical and dirty work. People come from book clubs, high schools, corporations, and as friends of families who have children with autism. They take time out of their weekends to help scrape and level cement floors, scrub wallpaper paste off walls, pull tile from bathroom floors; you get the idea. But everyone who has volunteered is intrigued with our mission and vision, and is eager to help and learn more. That’s not the case with everyone.

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One high school student who volunteered with us a couple weeks ago has three cousins with autism. She told me that one cousin wasn’t allowed to be in the school picture because he couldn’t smile properly. I felt like crying. OK, maybe the teacher of the child with autism was narrow-minded and more concerned about appearances, but the high school students who volunteered that day were curious and eager to learn. During lunch we talked about what Erik’s Ranch & Retreats is, what we plan to do and why their volunteering was important. They asked pretty deep and thoughtful questions; lots of them. Unlike the teacher with the smile problem, these young people wanted to understand about autism and what Erik’s Ranch & Retreats means to adults with autism.

Beth

Other adult volunteers have been equally as interested, asking questions about symptoms and how we work with our Erik’s Minnesota Adventures tour guides. After asking several questions, one woman said, “Wow, I clearly have had some misperceptions about people with autism.”

These volunteers (we call the elbow-grease gangs) have not only offered valuable physical labor, but they have taken the time to learn about people with autism. They come away understanding that although autism is a set of disorders, people with autism are individuals with talents and abilities unique to themselves—just like everyone else.

Ignorance may be bliss, but in this day and age, it is easily dispelled. That’s what Erik’s Ranch & Retreats is doing. Instead of trying to make people with autism fit some arbitrary norm, we are working to expand the norm to fit the individual. How does that happen? So far, we have our riding program, Erik’s Minnesota Adventures and a vision that sees what individuals with autism can do, not what they cannot. Soon, we’ll have another way for many others to help expand the norm. Watch for it in the next blog. You will be able to get involved and join the fun.