Keeping Your World Wide by Stacey Klim

I recently read an article about how women lose part of their identity when they become mothers. The article talked about how moms no longer have a picture of themselves on their Facebook page, that in fact their profile picture is typically a picture of their child (guilty as charged). The article went on to explain how we no longer associate ourselves as women who do this or that for a living, but we associate ourselves as mothers. I think this is  especially true for women who choose to stay home when they have a baby. For me, one day I was a teacher, the next day I was Jackson’s mom. It is even more true for those of us who have special needs children and suddenly find ourselves unable to work because we have kiddos who require above average care. When you spend a great deal of your week in the car taking your child between doctor and therapy appointments, you tend to forget about any career or career goals you once had. So what does that mean for us stay at home Mommies? I think it means we have to work a little harder to keep our world wide and not fall into the “our entire world is in our home” trap.

Going out with girlfriends, going to the gym, going out of town for the weekend. These were all things we do BC (before children), the trick is doing them AC (after children). It’s hard to keep up those connections and take time for yourself. I think a lot of Mom’s would agree that “me” time often consists of being able to go to the bathroom alone. Sad but true. Most days we are too tired from taking care of our children all day that we don’t have the energy to do something for ourselves. At some point we have to say enough is enough and make a conscious effort to get out of the house. The key to that though is having a supportive spouse or family member who recognizes your need and helps you achieve it. If you are a stay at home mom that generally means your husband is working to support the family. After working all day the last thing you want to ask him is to help you with the children. I feel that way a lot. But the fact is they are our kids, not just mine, so I ask him to help out. You may not be earning a paycheck, but you worked just as hard all day long. Telling your spouse you need a break is perfectly acceptable. Get out of the house. Go walk around Target for an hour. Go buy groceries, by yourself! Call a girlfriend and meet her for dinner. Find a Yoga class once a week. Do something, do anything! 

For me, I have a lot of things I have gotten involved in just so I can stay sane and mentally healthy. I am taking a Leadership Advocacy class through the Arc of Spokane, I am on the Board of Directors at the Spokane Guild School, I go out to dinner and a movie with girlfriends occasionally, I bought a treadmill (so I can work out after the kid goes to bed), and in the past 2 months I have traveled over to our State Capitol 3 times to speak to my legislators about disability legislation that affects my family. I couldn’t do all this without the support of my husband, who is wonderful and understands I need to do things for myself, to keep my world wide and wonderful. Dylan Thomas said “Somebody’s boring me. I think it’s me.” If you’re boring yourself, stop doing it. Find something that excites you, something that gives your life meaning, something that takes you away from being a mom for a while. It’s hard to do, but if you don’t make that effort to expand your world, well you won’t have much of one.

Read more about Stacey and her family at http://lifeonmysterylane.blogspot.com/.

Keeping My World Wide (A Self-Advocate's Perspective)

Jessica Renner with DDC Director Ed Holen

My name is Jessica Renner, I live in the 33rd district. My road to employment has been a journey of ups and downs, twists, turns, and loops. Starting in 2001  the year after I graduated from high school with DVR, WISE, and the Job Connection just to mention a few  agencies before ending up currently with DDD and SKCAC Industries and Employment Services. All together to date I've worked with a total of 10 job specialists overall. All of which have one thing in common, nobody has been able to find me permanent employment, all my history have been volunteer, and temporary positions. I know that finding employment is not easy especially for people with disabilities, and although I've had many successes while on my path to employment, including being a current active member of the DDC, SAIL, as well as having temporary stints with the City of Kent, Veolia Transportation, WAEYC,  and the Renton Community Foundation, all of which have been great work experiences,  however having the word staff associated with my name has not been one of them. It is my hope by sharing just a small piece of my story, I can change some minds, and open the eyes of everyone. I may have a disability, but I have always  had the ability to be a active and productive member in my community, and want, and deserve employment that gives me added meaning and quality in my life! As I want to be an example for others, and let people know that others can find there own successes on their own pathway.

I would like to thank you for being in support, and continuing to stand behind all services, and bills related to, and that effect people with disabilities. Being an individual that receives services myself, I am fully aware that without Medicaid personal care, and respite service hours, my life would be greatly impacted. Not allowing me to lead my life, not only in my home, but in the community, resulting in being extremely limited in what I do during my day as well as my pursuit to find, and maintain employment. I am lucky, and grateful to have my mom as my primary care giver, and a strong family unit to help me with all my day to day living needs, so I can continue to do what I enjoy, and advocate not only for myself but others who may be in similar situations, everyone needs services, and should have the right to access the services that fits their own situations Thanks again, for listening, and being in the continuous support of the developmental disability community.

Jessica Renner,

Employment Day Speech

February 13, 2013

Keeping Your Child's World Wide: A Dad's View

Anyone with a child these days is familiar with safety gates. Homes with mobile babies and toddlers turn into a maze of latches and lifts. Good luck figuring out how to open one of them. Whoever designed these barriers must have been "over-gated" as a kid, and has dedicated his life to seeking revenge on adults by devising a new, and more complicated, unlocking mechanism for each gate. That, at least, is my working theory. The goal of these gates is simple--create a safe space, and protect your child from the dangers that lie beyond. It is among the most noble of parental goals. It is also one of the  most misguided.

A great marine philosopher may have said it best:

Protective Father: I promised I'd never let anything happen to him.

Philosopher: Hmm. That's a funny thing to promise.

Protective Father: What?

Philosopher: Well, you can't never let anything happen to him. Then nothing would ever happen to him. Not much fun for little Harpo.

The Tao of Dory

Dads cannot help it. We see the danger lurking around the corner. We see the glass placed at the edge of the table, begging to be knocked over. That anticipation has kept us safe, and those that we care about. Our job is to protect, both body and heart. Yet, that instinct can betray the very objective it is there to achieve. 

Eliminate all germs from your child's life, and their immune system will never have a chance to build up defenses. Keep them from ever having their heart broken, and they will never find love. 

As the father of a special needs child, the urge to protect often combines with the fear of embarrassment to form a potent cocktail of isolation. Nate and I can stay home and both of us will be safe from what lies beyond. The front door is our safety gate. 

Yet, we work to overcome the fear. Or, at least I do. Nate is naturally fearless. I do my best to put us in situations that have positive outcomes. He still fits in the bike trailer, so we go for a long ride. He still likes to ride in the shopping cart, so we hit Costco. I may never be completely at ease in public with Nate. It is less because I do not trust him, and more because I do not trust myself. 

It takes a special gift to handle embarrassing situations with grace and dignity. My wife has that gift. I tend to get angry. The direction of that anger is unpredictable, and the outcome is rarely something to be proud of. 

Embarrassment is a self-inflicted wound. Nobody can make you feel embarrassed. Nate is proof of that. Judgment, however, is a weapon everyone wields. Nate has helped us find people that we can be around without fear of judgment. We joke about his ability to find the pure-hearted. Certain people just "get" Nate. People like the Ballingers, the Streichs, the Weicherts create safe places beyond our safety gates. They allow us to experience the world with pride and not shame. We are forever grateful. 

Come to my Birthday Party

It doesn't happen very often, but Nate was recently invited to a birthday party.  The pink, Little Mermaid-themed envelope was handed to him by a classmate after school, and Nate's shy smile told me how much the invitation meant to him.  Not surprisingly, the invitation put more than merely a small smile on my face.  I spent the afternoon beaming!  My child was being included!  My child was part of the community!  Nate's classmates like having him around!

But my elation eventually faded, and by the evening it was replaced with gnawing concern.  I can't just send Nate to a party without supervision. He isn't much for group-activities, and quietly fitting in is not his strength.  Did the parents of Nate's classmate want me to attend the party with him?  Is it weird if I go?  Is it weird if I don't go?  Will they be doing an activity that Nate will be able to participate in?  I know the birthday girl wants him there, but what about the other children at the party?  Maybe the birthday party isn't such a great idea for him...

Nate's world is more than just his home and his school, where the people around him accept and accommodate his eccentricities and special needs.  His world includes places where he's expected to conform, behave and fit in.  As his parent, I have a constant goal to widen his world.  I want him to feel he belongs, be it at the grocery store, the playground, Sunday School or a classmate's birthday party.  However, keeping his world wide means a lot of effort, work, and stepping outside our comfort zones.  It means letting Nate sit in the drivers seat of the enormous shopping carts with steering wheels even though he's way too old.  It means overhearing children making fun of him on the climbing structure because he's acting strange.  It means pre-planning, preparation, practice and hard work.

This month, it means calling the birthday girl's mom to ask her thoughts on Nate coming to the party.  It means taking some extra steps that typical parents don't have to take, including finding out what the party activities will be and writing a social story to help Nate prepare.  It will probably mean attending the party with him, and working hard for 2 hours to keep Nate interested and involved in the games of his peers.  It will definitely include a degree of sadness when the other parents wave goodbye and leave their kids for 2 hours, and I have to stay behind and monitor my child.

Keeping Nate's world wide, vibrant and multi-faceted is not always for the faint of heart.  It takes effort and  commitment, time and energy.   More importantly than what it takes, however, is what it gives back.  Nate smiled when he was invited to a birthday party.  Nate will find joy in giving his friend a present.  Nate will love singing happy birthday with the other kids.  When the party is over, and I'm no-doubt exhausted from the effort, Nate's world (and the world of his peers and their parents) will be that much richer, and that much broader.

We'll keep our eyes peeled for the next birthday party invitation.

Keeping Your World Wide

It's February, which means it's time to address our newest topic, "Keeping Your World Wide"!  Please share your thoughts, advice, feelings, or stories of success (and failures) regarding your efforts to create a broad sense of community for your family member with disabilities.