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…]

The Words That Stopped Me In My Tracks

IMG_3767

We were hiking with 2 of Sabrina’s friends when I heard the words.

We had stopped to take a snack break. Sabrina was hoarding the can of Pringles, and we were all laughing about how she had pushed her friend’s hand away when the friend tried to get in the can (Sabrina’s can, apparently).   As we laughed, Sabrina’s sister gave her a huge hug.  And then heard the words.

“Sabrina, you are so loved.”

I stopped what I was doing and looked up and just stared.  I stared at her friend’s face, the one who said it.   She was looking at Sabrina with a huge smile on her face.  I looked at her other friend’s face, and it was completely unmoved, like those words had been casual words, and nothing out of the ordinary.  I looked at Sabrina, who was nonchalantly chomping away at her Pringles, unaware of how huge those words were.  Then I looked at my younger daughter’s face, Sabrina’s little sister.  She too was staring at the friend who said it.  I could tell it made an impact on her.  She looked back at Sabrina, and then gave her another hug.

Those words had a big impact on me.  I flashed back to 3.5 years ago, before Sabrina was at our neighborhood school, and how the thought of hearing something like that from one of Sabrina’s typical classmates would have been a complete dream.

Sabrina’s sister and I talked about it later, and she repeated the words to Sabrina.  “Mama, she said ‘Sabrina, you’re so loved’!  It was so sweet!”  They had a big impact on her, too.

This is why I love sending Sabrina to school every day.  Because Sabrina is building a little community of kids who see what a sweet little soul she is.  A community of kids who know her, who warmly greet her in the morning and say “Come on, Sabrina, let’s stand in line together.” A community of kids who are excited about and proud of her accomplishments, no matter how small.

Isn’t that what any parent wants for their child?

They said…

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

IMG_1987

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

10857114_868775073182769_7761027306077866527_o

IMG_0539

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

IMG_0335

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

IMG_0413

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

IMG_0408

…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”…

IMG_1785 11071687_878964735497136_3698465328300317797_n

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

IMG_5062

12370730_1009182089142066_4551129151314106128_o

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

IMG_0469

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

IMG_0012

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

Portfolios

IMG_5103IMG_5102

 

 

 

 

 

 

 

“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!

IMG_5062 IMG_5061

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!

Some Monday Inspiration

“People try to define who I am, but I’ll do that myself.”  -Brandon Gruber

Last Friday I had the pleasure of meeting Brandon Gruber, a teen who was recently featured in People Magazine. He was featured not because he was homecoming king and has Down Syndrome (although both are true). He was featured because after he was crowned homecoming king he decided to open doors to others who don’t feel included.

Last year he raised $20,000 by selling his artwork and accepting donations, and all of that money was used to provide financial support to those who were unable to pay for prom, yearbooks, camps, and more.

If you wish to purchase cards with Brandon’s beautiful artwork on it, or just want to check out his story, visit his site at www.321life.com.