Thursday, December 11, 2014

The Many Paths to Inclusion

by Betsy McAlister, Guest Contributor

The realization that something is unfair comes in many forms, and often during unexpected moments. Our moment came last year when my older daughter was a senior in high school. She had tears in her eyes after listening to me explain that her freshman sister was being asked to drop choir due to vague reasons that it might be too difficult.

Her sister, born with developmental disabilities, had been in choir since elementary school, and we thought her participation in the high school choir was a given. And yet discrimination and the difficulties of inclusion were unfolding, once again, in our family life.

As a parent, there have been many times I have faced a teacher, neighbor, friend or stranger who does not understand inclusion; however, my mind kept questioning how my younger daughter could enjoy the benefits of a music program if she wasn’t even in the class.

The reality is, physical presence is the first step to inclusion. If my daughter is not even at school events, public places or family gatherings how can she participate? Where is her dignity of risk? Shouldn’t high school, for her, be about new experiences and classes and not about exclusion and imposed limits?

We were faced with choices: educate, push, pause, agree or disagree. In this instance, my mandate from my younger daughter was clear: it was time to push.  She repeatedly made it clear to me she wanted to stay in her choir class, and she needed help in advocating. This opportunity was not about a power struggle between her teacher and me but about my daughter’s passion for music and her goals in high school.

As my husband and I strategized and attended numerous meetings, we agreed that we had to do what is really hard to do: we listened. We went to every meeting requested, and we listened...again and again and again. We listened when the teacher mentioned that my daughter’s presence was not fair to other students because it was a performance choir. It was hard to listen to that, but we did.

We engaged our daughter in the process, made our expectations clear and found her additional support for the class. We refused to agree to her being transferred out of choir, but we also came to the table with ideas, openness and support. And through the process we found her choir teacher became willing to work with us and offered many great suggestions and ideas.

This September, at a fall choir performance, my husband and I listened to a few choir members on stage share why they loved choir. Each mentioned the beautiful music first thing in the morning, the friendships, the learning, and the caring atmosphere of their “choir family.”  One student gushed, “Choir is just the best.”

My husband smiled at me as we understood those same experiences were just what we hoped our daughter would enjoy. The path was difficult, but there she stood in a beautiful dress on stage singing.

Friday, December 5, 2014

Alexa's Story: Why Not Me?

Throughout her childhood, whenever Alexa’s parents talked about her younger sisters trying something new, she would ask, “Why not me?” It was hard to accept, but Alexa’s mother never really had a good answer. So, as Alexa pushed the boundaries, they felt their way through the challenges of creating as typical a life as possible.

As they got older, and the topic of getting jobs and moving out became a conversation with her sisters, Alexa once again asked, “Why not me?” After all, she was the big sister. Her parents agreed; they shared the same expectation of work and a life outside the family home for all their children. For Alexa, as always, it would take extra help and some trial and error.

With help from her family and paid services, Alexa found employment and an apartment that she shared with her grandmother. Later, when her grandmother moved out, Alexa and her family advertised and interviewed a new roommate without disabilities and closer to Alexa’s age.

Sharing her home with a peer that has an active social life, including online dating has had Alexa asking herself, “Why not me?” She’s had a boyfriend, but being around her roommate made her realize that she was missing something.

“In real life, it is hard,” she says, sipping her iced tea at a local coffee shop and teasing her mom about being a "drama queen" over the topic of dating. “I’m a little bit picky. The guy has to be cute, but also nice and kind.”

She says that it was her idea to try online dating. Her mom found a site that’s for people with disabilities that they both felt comfortable with. “It’s like email,” Alexa explains. “Most of them live on the other side of the country.”

When asked how she deals with her mother’s concerns, Alexa says, “My mom was more like the worry wort. So, basically, I decided I wasn’t going to tell her everything about it.”

“Just like her sisters,” her mother says. “Nobody tells me anything.” Alexa beams and laughs at the compliment.

She is proud of her independence. “I’m more mature now. I take it serious. I do want a love life. It makes me feel lonely [not to have one]. I want a guy who will understand no sex and no kids. I need a guy to respect that and not take advantage of me—online or offline. I’ve always felt that way.”

When asked where she gets this wisdom from, she says, “Myself.”

Her mother perks up. “Maybe your family had something to do with the way you turned out?”

“No. I don’t think so.”

The laughter and banter continue. Alexa says she’s not as involved with the dating site as she was at first. “If I check messages, it’s only on the weekends.”

Her patience is as strong as her perseverance. As she reflects on dating and finding someone to be in her life, she recalls a movie she’d seen, The Great Gatsby, starring Leonardo DiCaprio. “Leo waited a long time for her. I just decided to wait for a time the way he’s waiting.”

When it comes to finding that special someone, Alexa makes it clear that she's no different than anyone else.

Friday, November 28, 2014

The Friendship Dilemma: Finding Peer Activities

Continuing our series on friendship, the following thoughts on making friends are offered by a parent whose son has significant disabilities.


The topic of friendship for my son poses an interesting discussion. He is non-verbal and on the lower functioning end of the developmental spectrum.

Truthfully, and sadly, I haven't had making friendships as a goal for my son. He requires a caregiver to be with him where ever he goes. Oftentimes logistics, lack of energy, and/or lack of time are extra hurdles that get to be too much. My focus has been on finding activities that he would enjoy, or exist as a part of life.

Two way communication is the beginning of typical friendships and also what sustains and nurtures it. When that doesn't exist, then being in the presence of another for a lengthy and frequent amount of time is the only way to establish a friendship/relationship. 

Currently, my son attends a day program all week, and a bowling peer group monthly, and I consider his peers there to be his friends, although they have rarely gotten together outside of the respective events. Outside of these activities, his best friends are his siblings.

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.