Thursday, November 20, 2014

Friendship: Expecting the Best, Preparing for the Challenges

by Susan Atkins, Guest Contributor

Helping our kids make (and keep) friends is a huge challenge. There never seems to be anyone who can help, or any easy answers; however, over the years, a few tips I picked up along the way helped me with all three of our girls, especially Alexa, who was born with Down syndrome. 

Tip #1: Have High Expectations and Hope
When your child is different—diagnosed with a disability—it is more difficult to figure out how to help them make friends, especially if they don’t have language and social skills until a later age. Alexa was one of those kids. She always had a great smile, but did not have the language to interact much with other kids in those early years. I had to hope and expect that with help—from her family, the neighbors, and her school staff—she would make some friends.

Tip #2: Provide or Create Access to Other Kids/Inclusion
Someone told me “you have to have access” to make friends. You have to be in class, at church, in the neighborhood—not home sick all the time, not in the house, not in a special ed class all day. Other kids have to spend time with you to get to know you before they will be your friend. I also felt that you have to be around other kids who are talking and acting socially appropriate if you want your child to learn those skills.

Alexa was a watcher and would imitate what the other kids did or said. I wanted her included as much as possible, which was often not easy for the schools. But it just felt right. I wanted her to be part of our society, not on the outside. I also wanted the other kids to get to know Alexa and find out she was "more alike than different.”

Once in school, Alexa had a Circle of Friend’s group every year. Circle of Friends is a group that’s facilitated by special education staff. Usually we would get 6-7 kids (without disabilities) from a class who would come.

The special ed teacher would facilitate the lunch group once a week. I used to buy pizza once a month for the group and stop in and eat with them to get to know the other kids.I also tried to get to know the other kid’s parents as they were the ones I had to “sell on” letting Alexa come over to their house or they come to ours. Once she was in high school the “peer tutor group” took over and ran the Circle. It was great. They planned everything, and even took the kids off campus to movies, out to eat, etc.

Another way to provide or create access to other kids is to make sure that your child is included in the first and last periods of the day at least. Those are the important times for kids get to know one another, as they listen to announcements, hang up their coats and back packs.  And make sure your child is “part-of” a regular classroom, not just included at lunch or recess. Again, you have to have Access and Inclusion to make friends.

Look for non-specialized programs and groups for your child to join. Girl Scouts and Camp Fire and Boy Scouts can be great inclusive groups for your child. Alexa was in a Girl Scout group in grade school. Later, she went on to join the Choir and also was in ASB and Leadership Class. Another parent and I pretty much helped plan and bought all the supplies.

Tip #3: Make Your House a Really Fun Place for Other Kids
Role play and talk about “fit in” behaviors at every age: not hugging the kids, just saying hi, not standing too close or talking about or doing “too personal of things.” Age appropriate behaviors: dress like the other kids, watch the same movies, listen to the same music, play the same computer games, read or listen on tape to the same books, be able to play on the playground with them. We needed to give Alexa things she could talk about and do with other kids at every age that they could enjoy together.

Tip #4: Network and Get Support
Make sure that you get the support you need from other parents. Join Parent to Parent and other support groups. Take time for yourself and get away with your partner/spouse.  I needed a life outside the disability world. And many of these tips I learned from other parents before I tried them out on Alexa and her sisters.

Today, Alexa is all grown up, working and living on her own (with support). Things are not perfect, of course. She would like to find a “guy friend” to be best friends with. We are still working on that, as she wants that in her life. Facebook has been a great way for her to keep up with her friends and she really enjoys talking with them that way.

If I can be of any help with this please email me, Susan Atkins, at: Statep2p(at)earthlink(dot)net

Friday, November 14, 2014

Best Friends Forever? By Rachel Nemhauser

Nate is an awesome kid.  He’s funny as hell. He’s silly. He’s energetic. He’s creative. He’s non-judgmental. He’s sloppily affectionate and tremendously sweet.  His enthusiasm for the world around him is contagious and his laugh is completely infectious. He loves whole-heartedly and has never said a mean word about another person. Like I said, he’s really an awesome kid.

With a resume like that, you might be surprised to learn that Nate doesn’t have many friends. The phone doesn’t ring for him very often, he trick-or-treated alone this Halloween and a four day weekend just went by without any playdates or get-togethers.  He rarely gets invited to birthday parties, spends most of his time with his family, and sees his peers almost exclusively at school.

Of course, Nate’s developmental disability, limited vocabulary, excess drool, and unusual behaviors make enduring and meaningful friendships a challenge for him.  His lack of a strong desire to cultivate friendships doesn’t help.  Most days he’d rather do an activity of his choosing than accommodate the preferences and tastes of a playmate. He prefers his own house, toys, and favorite TV shows to the alternative of trying something new or different. He has little interest in modifying his own behavior to impress another person.  That’s just not the way he rolls.
With all of that said though, Nate loves being around other kids.  He doesn’t always want to join in their activities but he likes to observe and hang out close by.  He loves to be included in the noise and fun and chaos, and is especially thrilled if a peer shows interest in his interests. On the rare occasion that he does attend a birthday party, there is not a single other guest more enthusiastic when the birthday kid blows out his candles. Nate is joyous around other kids and he’s not afraid to show it.

As his mom, I yearn for more friends for him.  Trick-or-treating with a big group of kids is a blast, and going without friends can be lonely. Getting invited to a birthday party feels so good and being left out doesn't.  Having a friend call to check in on you can turn around a bad day really quickly.  Feeling accepted, warts and all, from someone outside your family is so completely validating. I desperately and whole-heartedly want those things for him. I also know that my companionship is not enough for him, and that he needs friendship for all the reasons that everyone needs friendship: company, entertainment, support, feeling a part of something, and so much more.  As he gets older and becomes an adult, I expect his need for friendship to grow exponentially.  I can't plan to be his mom and his best friend for the rest of his life; he deserves so much more than that.

How do I encourage friendship to a kid not missing it or wanting it?  How do I convey to Nate’s classmates and their parents that he would welcome being included, and has a treasure-trove of gifts to offer?  Like many aspects of raising Nate, our quest for friendship is a work in progress. 

Please share your stories and check back soon for more perspectives on disability and friendship. We look forward to hearing from you and learning about how others have answered these very complicated questions!

Monday, November 10, 2014

Facebook Post by Anonymous

The following message was posted to Facebook recently, on a private group wall, and is being reprinted here with permission of the author.  While meant for a limited audience, its message may resonate with many of us.

Over the last few weeks, well meaning friends (even my husband), have warned me to not share too much, least people judge unfairly. That I should remove posts. I want to be clear, I am very aware of how it may appear to some. That there are those that may, as my husband fears, think less of the person I am.

Well, shame on you. Shame on society. I am not weak for admitting that I need help, I have been through things that most wouldn't come out the other side. Seeking and accepting help does not make one weak, especially given the alternative. I have been breaking myself to try fix my family and everything on our plates, to try and help our special needs child. If I do not reach out for help, it will end sadly. How unfortunate to live in a society that is hush-hush on things like suicide. Where I would feel shamed into being quiet about what is going on now.

The truth is that many special needs families are greatly suffering, but they suffer in silence. I know this because of the private messages they send me. It's no coincidence there's a 90 percent divorce rate, a gross increase of a anxiety and depression, suicide...the articles you read about the horrific end with these families sometime is not a joke. There are reasons for these things. It is inexplicably hard.

Knowing full well that there are those reading my posts that aren't capable of understanding or will judge our situation, why do I still share? I share for two reasons: 1) There are those that have pioneered these roads already, that know what to do and what resources there are. Who actually can help. They have spoken up and pointed my family in the right direction. Even though there are those that have turned their backs, there are those that have breathed life back into my family and are helping us to keep going. 2) This is the biggest reason. Perhaps you are also living in the discovery phase. Perhaps your friend is. Living the life of limbo hell, confused and drowning....feeling hopeless. You ARE NOT alone. When things are better, I will be helping these families. This is not ok. I hope watching our journey unfold inspires another mama to keep fighting, to seek help, to take care of herself and her marriage, to find her voice and ask for what she needs. I hope it inspires even one person, to speak up and say "Things have gotten so bad, that I feel like taking my life is the only solution left." Are those words scary? Very. Is it hard? Hugely. But they are the words that can save your life and start to help make things better.

Things had gotten so bad that I had an entire plan, start to finish. A way to keep the children safe and someone to be here immediately, a way so my family would never see, the best way possible. I even researched all the details. Because I spoke up, we are starting to get help. My husband's dad drove here from Spokane when he finally broke down crying and admitted to how awful things have become. A friend of our family took our son for a desperately needed break for him and everyone. Community members have lent a helping hand to help us get our house in order. My husband is taking time off work. We are finding counseling for the whole family. Today I am going to either be hospitalized in-patient or out. I hope out, but I am now open if not. We have learned of more resources to help us, to help him. Because of all of this, I am choosing to keep fighting instead of the plan I had intended to follow through with as of Friday.

Let me repeat that. On Friday I told my husband through tears that I was sorry, I simply could not go on anymore, that there was too much pressure and no hope and no end and I was a prisoner in my home.

If I hadn't shared, I could very likely not be here anymore. I am not saying this to scare anyone. I am sharing this in the hopes that someone speaks up. So friends and family don't end up losing someone who felt they should not share. Who felt they should suffer quietly. Please please please don't. Ask for the help you need, but first learn what that help is.

http://www.huffingtonpost.com/ellen-stumbo/7-practical-ways-to-help-a-special-needs-family_b_4215728.html

Wednesday, October 29, 2014

Holly's Story: Food, Music and Nice People

Profiles in Employment: A Celebration of National Disability Employment Awareness Month


What do you like most about your job?
The really good  food. I get free lunch!

Is there anything about your job (or you) that would surprise people to know about?
The music is really cool.

What has been your best experience about working at Cafe 43 so far?
I have really nice people to work with.

Monday, October 20, 2014

Ben's Story: Doing Things His Way

Ben Huwe owns his own business, selling gift bags and cards out of Elk Drug Store in Dayton, WA. He likes being around people and having his business inside a store where people are coming and going, and there's a lot of activity.

Ben Huwe Cards & Designs (Dayton, WA)
In the past, he has been commissioned to make a large quantity of bookmarks for students who read in the Dayton School District and for a Dayton car event All Wheels Weekend. He hopes to expand his business soon.

Last year he made the front page of the Union Bulletin when he and his house manger lobbied for him to be able to do his sidewalk chart art in Downtown Dayton.

Ben is happy with his job and says other people should do their own job!

Thursday, October 16, 2014

Alexa's Story: A Double Tall Order to Fill

Original profile written by Puget Sound Personnel

Customers at the Issaquah Gilman Starbucks know they can count on two things when Alexa is working: a spotless lobby and her engaging spirit to brighten their day. When she first met with Puget Sound Personnel (employment provider) in 2004, Alexa knew that her favorite coffee shop would also be the place where she found her dream job. A family contact helped open the door for PSP to develop the ideal cafe position for Alexa where her professionalism and ability to remember names, faces and drink orders keep loyal customers coming back.

“At Starbucks my co-workers are really nice and helpful and we sell
amazing drinks like Frappuccinos.”

After expressing a desire for more work hours and added challenge, PSP developed a second job for Alexa as a hostess at Applebee’s in Bellevue in the fall of 2009. As the first and last face patrons see when going through the doors, Alexa makes sure that every customer's experience begins and ends in a positive manner. Her work ethic, attention to detail and love for people have helped make her a workplace success with customers and co-workers alike at both job locations. And, that's a double tall order to fill!

"I love both my jobs. At Applebees, my co-workers are also very nice and
it is a fun place to work. Everyone is very friendly to me.”
Alexa is highlighted in this month's Starbuck's newsletter and is scheduled to speak at corporate headquarters this month. Way to go, Alexa!

Monday, October 13, 2014

Julie's Story: 10 Years and Counting

Julie has been working as an Administration Secretary for the Department of Human Resources for 10 years, where she works hard doing data entry and checking the website for broken links.

Julie uses Dynavox to communicate with her computer.
 "I never envisioned myself doing this," she says. "I like my boss. I like going to work. I don't like sitting at home."


What does she like best about her job? Without missing a beat, she answers: "The money."