A complete stranger can change your outlook

We were sitting at the bar at Bear Republic Brewing Company in Sonoma County, chatting with a couple of strangers who were sitting next to us.  We learned that they were mother and son.  As we sat chatting with them, their casualness struck me.  I suddenly thought about how “lucky” this mother was that she was able to spend weekends with her son and how challenging it would be for Ken and I do to things like this when we’re older.

At times I get overwhelmed thinking about Sabrina living with us forever.  Not always, not often, but at times.  At times it hits me out of the blue.  Not only will we be older with considerable less energy, but the implications for when we pass away are heartbreaking. And, I am not going to lie- it’s difficult to think about how challenging it’ll be to do things that our friends without special needs kids will most likely be able to do fairly easily- travel, socialize, get involved in activities…

Yes, I know how ridiculous my thought about this mother and son sounds. On many levels. I found myself immediately surprised by my reaction, as it’s not a thought that I typically have when out in public.

First of all, why am I worrying about this on a getaway weekend with my husband?  While at a bar.

Second, there I was, a mother of a special needs child, and I was enjoying a weekend out of town without my children.  Any family with a special needs child could have looked and me and Ken and thought the same thing of us.

Third, we all have responsibilities.  Some of us have special needs children.  Others have typical children but no resources for childcare.  Others have serious medical conditions.  No one leads a carefree life.

As we chatted more with the mother and son duo, the fact that our daughter has a disability came up. The mother casually asked what kind of disability she has.  When I told her “an undiagnosed genetic condition”, she asked me to tell her more about that.  She showed a lot of interest, asked specifics about Sabrina.  Anyone who knows me knows I am an open book, so we chatted about her for a while.

Then she told me that she has an adult daughter with special needs.  

Who sounds very much like Sabrina- at the same developmental level that Sabrina is now.

And who lives with her.  

And that she also has an adult son with a disability.  More severe than Sabrina.

Oh, and that in her 40’s she decided she wanted to go back to school to study Special Education, she got her credential and is now a Special Education Resource Specialist.

Whoa.

This situation, more than any other in my life, really brought home the saying “Things aren’t always what they seem”.

I had told her that I assumed Sabrina would live with us forever because I wouldn’t feel comfortable placing her in a group home. My feelings about “putting her in one of those places” were very negative.  She told me that her own son is in a group home, and he is very happy there. Her daughter is still living at home, and it’s currently a good situation for her daughter because there’s a lot of social activity in the home.  When that’s no longer the case,  she will find an alternate home for her daughter. Not because she doesn’t want her daughter living with her.  But because it’s a better choice for her daughter.

Before she left, she made a simple comment that’s stuck with me.  She told me that this is a period of growth in area of housing for adults with disabilities and to stay positive that by the time Sabrina is an adult, that there will be a lot more positive options available.  And to be open to them.

The fact is that when Sabrina gets to be an adult, my parents most likely won’t be able to help us with her.  They provide us with major support, and not having that will make life much more challenging.  However, I am blessed to have a variety of help with Sabrina at this point in her life, outside of my parents.  We have found respite providers and babysitters that take great care of her.  We have friends who are wonderful to her, welcoming and open.  We go out with friends, we have people over, we enjoy community activities, vacations, dates nights.  The fact is that we do a fairly good job of balancing a special needs child with a healthy social life. Why should I think that having a special needs adult will be any different?  What reason do I have to believe that I won’t have even more resources to pull from in the future?  That I won’t be better equipped to deal with the challenges that come up when she’s adult?

A mother of an adult with a disability once told me that she worried so much about everything when her son was younger, and that now that he’s older, 1 of 2 things have happened. Most of the things she worried about didn’t come true. But those that did, she was better equipped to deal with at the time that they actually happened.

There are wonderful options for keeping Sabrina in our home, options that allow her to live with us while Ken and I lead full lives.  And I am now confident that if we decide that it would be better for her to live elsewhere, that she would lead a more fulfilling life with younger adults, that there will be more positive options at that point.  And if there aren’t?  Well, as my wise friend Shannon recently suggested, I’ll get together with the strong, determined special needs parents who I’ve been blessed to find along the way and CREATE ONE!

I often talk about how one of the reasons I advocate for inclusion for Sabrina is so that she learns how to live in the community. But a less talked about reason, one just as big if not bigger, is so that the community learns how to live with her.  Because growing up with children with disabilities will likely result in more adults with empathy and understanding, who know how to integrate those who are different into the community, and into their lives. Because it will likely result in a community of problem-solvers, who understand that Sabrina and others like her have the same right to safe, fulfilling lives.  Which gives us even more options.

I wish that I had asked that woman for her contact information before she left.  She truly was an angel that appeared when I needed it.  Wouldn’t it be cool if she somehow saw this or I was able to find her? I still haven’t given up the hope that I’ll get to thank her and tell her what a profound impression she made on me that day.

She gave me hope, made me realize I have options.  And when you feel like you have options, the challenge that you’re faced with doesn’t seem as bad.  Suddenly, having Sabrina live with us as an adult seemed like a more positive thing.  Not something forced on us, but a choice that we can make if it’s in the best interest of our family.

Kinda cool, huh?

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Today I came across a post written by a mother who once feared that her daughter with a disability would live with them forever, and then soon came to the realization that she would welcome that.  This got me thinking about my own fears and motivated me to write the post above.  You can read that post here: http://www.huffingtonpost.com/ellen-stumbo/what-if-she-lives-with-us-forever_b_5552848.html.

“Come on, Sissy. I’ll hold your hand and make you feel better.”

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“When sisters stand shoulder to shoulder, who stands a chance against us?”  ~Pam Brown

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Alexa, I know that being Sabrina’s sister won’t always be easy. You already have a desire for things and people who are “pretty” (yes, we’re working on that), and want things to be wrapped up in a pretty little bow. And let’s face it, as pretty and sweet and wonderful as your sister is… she’s not easily wrapped up in a perfect pretty little bow, is she? You’ll encounter mean people, people who stare, who don’t have the empathy and compassion that you’ve already grown to have in your young 3 years. And as you both grow, it’ll get harder.

A while back you, me, and Sabrina were sitting on the couch. Sabrina kept trying to hug you, but you wanted to continue to watch the video that was playing and kept pushing Sabrina way. Suddenly you turned to me and said “Sabrina doesn’t talk too much”.  I said “Well, baby, if she doesn’t talk very much, then her hugging us is her way of telling us that she loves us.” You looked at me like a lightbulb went on, turned to Sabrina, nuzzled up against her and said “Sissy, I missed you today sooooo much.” And Sabrina’s face completely lit up. My hope is that you always remember that although Sabrina may never be able to express in words how much she loves you, that you’ll see the way that she lights up at you and that you won’t need her words to feel her love. Allow yourself to feel it when she gives you her big hugs and beaming smile.

 

Last month we stayed at your grandparents’ house while we had some remodeling done. In the morning Avo (Portuguese word for grandmother) peeked into the bedroom that you two share and found you both sitting in your bed. You were brushing Sabrina’s hair while she sat there quietly, smiling. And she was still. STILL! She’s never still for anyone else while getting her hair brushed. You often tell Sabrina she’s your Best Friend, and always make sure she’s joining us in whatever we do.  Yet, I know that finding ways to connect with Sabrina can be challenging. It makes me sad that you two will never share typical sister stuff, like late night conversations and giggling in bed. However, my hope is that you will strive to find your own ways to connect with her, that you’ll carve out ways to keep your relationship a special one.

I recently came upon this post, which talks about what one mother of a child with a disability saw in the movie Frozen.   http://erniebufflo.com/2014/04/07/watching-frozen-with-my-daughters-disability-as-superpower-and-the-power-of-sister-love/.  Elsa was taught to “conceal, don’t feel” and to hide the differences she was born with. She was not to talk about it, in hopes that it would go away.  While being “different” will most likely never bother Sabrina (a blessing, in a lot of ways), you, Alexa, have already started to notice. My hope is that you will feel that you can communicate to me when you’re feeling sad, embarrassed, scared, angry or neglected because of your sister. Those feelings will come up, and it’s normal and OK. I feel them sometimes, too.

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We were walking to Sabrina’s playgroup, and because I was going to a training, you were able to join in, too. “Come on, sissy. Come with me to playgroup. I’ll hold your hand and make you feel better.,” you said.  My hope is that you never feel that your role in life is to take care of your sister. Your role in life is to open your wings and fly as your own person.  Your dreams are important.  However, my hope is also that you’ll always want to make sure she’s happy and safe.  You can be a fierce protector at times, and my hope is that you will always stand up for her when it’s the right thing to do.  You’re a mighty pistol, Alexa.  Sabrina is lucky to have you as her little sister.

Love,

Mommy

Sometimes a picture is worth a thousand words.

I was up against a bit of a dilemma back in October.  I wanted a way for Sabrina to thank her friends for coming to her birthday party.  I wanted it to come from HER, not me. But she can’t write and is fairly non-verbal.  So here’s what I came up with. Please excuse her crazy hair.  Pretty stinking cute, huh?

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When did YOU know?

The doctor handed me my crying baby girl, my first child, for the first time. Immediately I had an overwhelming feeling that something was … wrong. I repeatedly looked at the nurses and doctors, suspecting that they knew something they weren’t telling me.

As symptoms kept on creeping up those first few months, I told myself that I was just being a first time parent and being paranoid, yet I knew I wasn’t a paranoid nor overprotective person. Yet that’s easier to believe than facing the reality that your child isn’t “normal” (more about “normal” later!).

It wasn’t until Sabrina was about 7 months old that a medical professional referred us to a physical therapy assessment (upon my suggestion), and that started the spiral of tests, doctors, procedures, and therapy.

Having Sabrina has taught me many things, the first one being GO WITH YOUR GUT.   It’s usually (always??) right. I have used that piece of information every single day of my life since then.

Let’s hear your story. Perhaps you’ve known for a while, or maybe you’re just in the beginning stage of this whole special needs journey. When did YOU know?