A different lens

I quickly watched part of this video and something immediately caught my eye.

“It’s OK to say NO to doctors.”

Isn’t that powerful?

I learned this pretty early on when I permanently walked out the door of Sabrina’s first neurologist, who didn’t seem to believe that I should have a voice in my 1-year old daughter’s medical care.

Unfortunately, it took me a bit longer to learn it’s OK to say no to therapies and theories/beliefs that weren’t right for my daughter or for our family.  I cringe when I look back at the endless hours wasted trying to force Sabrina to do things that she didn’t want to do, that her body or brain wasn’t ready to do, instead of letting her be a kid.  I vividly recall what my internal reaction was when a friend of mine asking me if I didn’t think that perhaps Sabrina would get the same or more benefit from playing more with other kids.  Inside I screamed “of course not- she needs intensive therapy and then more intensive therapy! Playing with other kids isn’t going to help her!”

Oh, how I wish I would just have let her play more with other kids.

My decisions back then came from a place of fear:

What if she doesn’t “get better”?  What if this is the magical therapy that is going to help her?

I can’t get those hours back and there’s no point in having regrets.  All you can do is learn and move on.  I now look through a different lens every time I consider something for her.

I now look through a different lens every time I consider something for her:

Is this something that she’s going to have fun doing?

Is this something that will help her be a part of the community?

Is this something that is going to work for our family as a whole?

If the activity involves working on a skill, is it a skill she’s showing interest in learning?

Is this something that we truly want and need, or is it just an attractive option because it’s available to us?

Looking at it through this lens means we often say NO to things that have helped other children progress, and I am not going to lie and tell you that isn’t sometimes very difficult to do.  Believe me, the constant nagging feelings are always there.  Am I holding her back from learning because I am not bringing ABA into our home? Because I don’t push the reading more? Because she’s not involved in more activities?

In order for me to be at peace, I have to constantly remind myself of what our big picture vision is for Sabrina and try hard to block out everything else.

“The things which are most important don’t always scream the loudest.” –Bob Hawke

 

 

 

 

Moving Forward Without All Of the Answers

Do you ever have the feeling that you want to do or be more, but aren’t sure what that “more” is, or what you can do in order to be the best version of yourself that you can be?

Yeah, me too.

So many questions I constantly ask myself:

-How can I lead?

-How can I make the most of this life I’ve been given?

-How can I take all of the projects, ideas, and passions that I have and make enough space around each of them in order to really make a real contribution to each one?

-How do I make the most impact?

-How do I stop, take a deep breath, and just let it all go for a few moments so that I am present during the time I’m with my family and my friends?  So that I can recharge?

-How do I make space to do bigger picture brainstorming to get ideas out of my head and into action?

-Where can I learn to say “no” to activities and projects that don’t serve my bigger purpose?

-How do I improve at something that I have a difficult time doing – organizing all of the thoughts into my head into coherent sentences? :-)

I love the work that I do around disability advocacy and inclusion, and I love the business that I am building as an event manager.  I often dream about how to create a brand for myself that encompasses both, one that embodies who I am as a whole person and doesn’t require compartmentalizing the two.  That dream often paralyzes me from just doing something.

I am very aware that I like things tied up with a neat little bow.   And that planning, that “polishing” often holds me back from the doing.

I was recently watching a show where Seth Godin was being interviewed.  He said something that really struck me- that you should  “work to ship” instead of “work to polish”.  He talked about how when he devote time to something, he knows that at the end of that time that there will be an end result- something will be done.  Getting something done vs expecting perfection… what a scary concept, huh?  Read his blog post about this issue: You need to press the buzzer before you know the answer.

So, despite the imperfections of this blog post, I will now press “publish”.

I want to hear from you. How are you all pushing yourself to be the best version of yourself that you can be? In what ways have you pushed forward and “pressed the buzzer” without knowing the answer?

Creating Ripples Is Enough

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” – Mother Teresa

I often have parents contact me because they want inclusion for their child and they don’t know how to make it happen. Often they ask for specific steps.  Sometimes they just need some reminders, and inspiration and courage. I’ve had many of those parents get their child in an inclusive setting.

Then there are those who don’t.

I have a difficult time letting go of those.

I started to write a long blog post about this, but then stopped.  Because what it comes down to is simply this:

I can’t change the world, and that’s OK.

And so tonight, and moving forward, I will try hard to focus more on the successes than the disappointments.

I will remember that it doesn’t fall on my shoulders to do all of the work.

I will remember that any change that has been bought about because of Sabrina’s story has been Sabrina’s change, and not mine.  She has changed so many hearts, and she’s only 9.  She will continue to do great work, and I will continue to fight to allow her to do so.

And now, instead of trying to put into words all that is in my head, I will let it go, and go to bed.

Playing Big

Play BigWhat does “playing big” mean to you?

Is it starting your own business?

Is it pursuing a creative outlet, like creating art?

Is it making a systems change within your current work environment?

Is it getting up the courage to make a presentation in front of a group of colleagues?

Is it moving your child with special needs to their neighborhood school?

[Read more…]

They said…

…that you would work in the back of the classroom, isolated from the class…

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…that you wouldn’t have any friends and that the other children wouldn’t relate to you…

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…that you would be overwhelmed and would hate going to school…

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…that you don’t notice what’s going on around you and therefore wouldn’t benefit to being around other kids…

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…that you wouldn’t be engaging in anything meaningful…

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…that after 3 years in a self-contained classroom you were just starting to respond to your peers reaching out to you, and that putting you in an inclusive setting with more demands would hinder that “progress”…

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…that because you don’t have very much verbal ability, that you wouldn’t be able to participate in presentations, etc….

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… that you wouldn’t be embraced and the other children wouldn’t want you in the classroom…

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…that you wouldn’t be able to participate in the general education curriculum…

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Remember Sabrina, don’t ever let anyone’s ignorance and assumptions limit you!

Portfolios

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“Her portfolio is her marketing package.”

That’s what someone in the field of inclusion just recently told me.

Yes!

I’m spending some time working on Sabrina’s portfolio today.  She’s had one for about a year now, but I’m updating it and adding more information about her recently activities and sports, and adding a section for the future.

Sabrina’s portfolio highlights who she is, and what she can do and accomplish.  It explains how people can help support her.  And it explains the high expectations we have for what she can accomplish and who she can continue to be.

Now that she’s in school, it’s used to introduce her to new teachers and staff.  It’ll be used to show what she can accomplish in an inclusive setting.  It’ll be used during various transitions, to show our expectations for her life.

Does your child or the child you support have a portfolio?

Happy Birthday, Dr. Suess!

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Receiving this message from Sabrina’s teacher today made my day and made me teary.

“In honor of Dr Suess’ birthday today, I knew Sabrina loved his books and knew the words, so she was a star. She read a Dr Suess book to the class and everyone clapped for her! She did a beautiful job!”

Thank you, Ms. Morgan!

Why Sabrina WON’T Always Live With Us

IMG_3101A lot of people ask us if we think Sabrina will live with us for the rest of her lives. Those are people who have never met her. Those people who have met her just assume she will. I always assumed the same.

I no longer do.

My thoughts on this have changed dramatically since I’ve been involved in attending conferences about inclusion, and have had the opportunity to hear stories about adults with significant disabilities who are leading self-determined lives.  After attending CalTASH’s Regional Conference last week, I’m again reminded of the reasons I no longer envision that Sabrina will always live with us, and the reasons I don’t want her too. Here’s why.

She won’t want to. | What early young adult wants to live with her parents? Well, OK, more and more these days do. But Sabrina is a kid who on the weekends will bring us her backpack, start rattling off her friends’ names, say things to us like “line up”, and then bring us her shoes. And she’s only 9. What makes us think that she’ll want to hang out with us even more when she’s 20?

Because Ken and I need to have a normal life, too. |  Enough said.

{And the kicker, right here…}

Because we need to have a great plan in place for her before we’re gone. |  I’ve heard people say that never in their lifetime would they allow their child to live somewhere else, that they won’t feel safe unless their child is with them.  But isn’t that a somewhat false sense of security?  The  fact is that unless something unfortunate happens, Ken and I will pass away before Sabrina does.  And that’s the scariest thought to a parent of a child with a disability.  I try to not let it keep me up at night.

But I have to believe that I would feel much more at peace with that time coming if I knew that my daughter was already living in a situation that was safe, that made her happy, and that was sustainable.  

And no, I don’t expect Sabrina to live with Alexa after we’re gone. Because in my opinion, that’s just unfair. What I do expect is that Alexa makes sure that Sabrina is OK.  That may mean a variety of things. But it won’t mean living together.

So now what?  What does a life for an adult with significant needs look like? Stay tuned for Part 2!