The Words That Stopped Me In My Tracks

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?

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They said…

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

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

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

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

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

…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”…

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

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

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

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

[Note: this post included several embedded photos of Sabrina in the original — not recoverable as text.]

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Portfolios

“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?

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Happy Birthday, Dr. Suess!

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!

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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.

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Why Sabrina WON’T Always Live With Us

A 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!

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be an includer

Show your support for inclusion and for anti-bullying by wearing this cute, simple t-shirt. These share the perfect message for kids to wear to school! Campaign ends Tuesday, March 13th, so hurry!

[Note: original post linked to a t-shirt campaign (men’s & women’s sizes, kids’ sizes) — link not recoverable from this capture.]

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We Finally Did It — Our Trip to Disneyland (with lots of pictures!)

There are a lot of people who love Disneyland and get excited about going often.

I am not one of those people.

I don’t remember what finally got me to change my mind about going, but I think it was a blog post I read where someone described their trip and it got my rethinking the experience we could have.

And so a couple of weeks ago we, along with my parents, took the kids to Disneyland for the first time. My parents came with us. Up until the night before we weren’t even sure we were going to make the trip, since Sabrina had been sick. We ended up deciding that she was well enough to go, and that if we waited for everyone to be sniffle-free, we’d never go.

We had a wonderful time. I wasn’t sure how Sabrina would do with all of the sensory stimulation, but she did great. I know she wasn’t feeling 100%, but was just a trooper, anyways!

Here is a sweet moment between the girls while waiting to visit the fairies.

I loved the characters at California Adventure, like Doc McStuffins and Sofia the First. Something about the fact that they’re in our living room so much – they’re probably Alexa’s 2 favorite shows right now, and we allow her to watch TV in the morning after she gets up and before getting ready.

Alexa and I stood in line to meet Elsa and Anna, and when it got to be our turn, Sabrina walked up to them. She was very hesitant, but Anna was really sweet, gave her a huge smile, and reached out to her.

Snow White was sweet and sensitive to Sabrina, too, although I didn’t get a picture of that.

Sabrina loved the street dancers and the music in the streets.

My plan was to enjoy the moments and not feel pressured to do and see everything. And we did just that. We went with the flow and put no pressure on ourselves to see or do anything in particular. It worked well for us.

There has been a lot of controversy about the new DAS pass. The new system is that you go to a kiosk to let them know what you want to ride and they give you a time to come back to that ride so that you can go through the Fast Pass/alternate entrance and not wait that time in line. It totally worked for us. I can see that if you go often and have a routine down with the old system, that the new system is a change, and that can be difficult for people. But honestly, we found it to accommodate our needs perfectly.

We definitely stuck to the younger rides, more due to Alexa than Sabrina. At one point we went on the Roger Rabbit’s Car Toon Spin. You can choose to spin the wheel in order to spin the car. I was in the same car as Alexa, and Sabrina was with Ken. We were right next to each other, so we could yell over to each other. Alexa was a bit scared and wanted me to keep the wheel steady. I looked at Ken and Sabrina and he was spinning the wheel like crazy. “Do you remember who you have in your car?!”, I yelled to him. “Sabrina loves it!”, he responded. Yes, she loves movement. But had he forgotten that she also gets motion sick?! 🙂

We went swimming on our last morning there.

The indoor heated pool was nice, but Sabrina LOVES HEAT. So after swimming in the pool for about 20 minutes, Sabrina suddenly ran out and jumped into the hot tub. The huge smile on her face was priceless. Of course, we all had to follow.

Great trip, great memories. We may even go back soon. I’d love the excuse to do this again.

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Why comments like “She could work in a kitchen” suck.

In January 2009, when Sabrina was 2 years old, I took her to see a Clinical Psychologist at a well-known and well-respected hospital/research center. Sabrina was to get full psychological and developmental testing. I don’t know what I was looking for that day, but with a child showing significant developmental challenges, it just seemed like the thing to do.

It turns out that in addition to not learning anything helpful, I also got dealt a bit of unwelcome news. At the end the session, without warning, the Psychologist wrapped up the session by declaring that Sabrina had cognitive deficits and that one day she could get a job “working in a kitchen”. She said this in such a way that suggested that I should feel comforted by the idea.

I was completely taken aback. I originally thought she might give me some insight that would help Sabrina reach her full potential – some insight as to what approaches may work best for her. I certainly wasn’t expecting her to tell me where Sabrina would be when she was an adult. At that point I was just thinking about where we were going to enroll her in preschool!

She must have thought that she was doing me a favor, that perhaps I was worried for Sabrina’s future and that she was giving me hope. Or perhaps she thought that her job was to give me reality check.

Sabrina was only 2 years old.

Already at age 2, someone was limiting Sabrina based on test scores – limiting who she could be one day.

At the time we were very aware of Sabrina’s challenges, and that she may never talk, may never do a lot of things. But up until that point, I hadn’t considered what Sabrina’s adulthood might be like. And at that point, I don’t think that I needed to.

I allowed these test scores and predications to change the way I looked at my daughter. At the time I sort of knew better, but not enough. I didn’t have the experience, the knowledge, the advocacy skills that I do now. I didn’t know anything about disabilities. And I was scared. This woman was a professional, and her words were all I had.

Now, there’s nothing wrong with working in a kitchen. If that’s what makes Sabrina happy and what she enjoys, GREAT! But, what if it’s not what Sabrina enjoys? The professional didn’t suggest any other options, and her tone and delivery didn’t leave me excited about the possibilities for Sabrina’s future. It calls to mind professionals in the 50’s and 60’s telling parents of babies and children with disabilities that they should institutionalize the children, as this is the highest calling they’d reach in life. Although this may sound like a harsh comparison, isn’t the professional in both situations putting limits on the child?

This clinician actually specifies on her website that she’s interested in helping parents understand their children’s unique strengths, but what about Sabrina’s strengths informed her opinion that Sabrina could work in a kitchen? What about that statement empowered me to build on Sabrina’s strengths in order to maximize her potential when she got older, and to use those strengths to help Sabrina find something she could find pride and accomplishment in?

Now, 7 years later, I know that Sabrina’s challenges are significant. And yet, my vision for her future, is set much higher than it’s ever been. For the first time I’ve allowed myself to envision her life as an adult, because I see possibilities.

Those of you who know Sabrina now she’s social. She has an amazing smile, she loves meeting new people and engaging them.

For the first time, I see possibilities. The jobs that Sabrina has at school has opened my eyes to what she can do someday if given the support. It’s opened up my eyes to how much she truly gets enjoyment and satisfaction out of doing a job where she knows what’s expected of her, and how proud she is of herself when she accomplishes something. I can see how she fits into a community and how she can be a valued member of that community.

Could Sabrina, with the proper training and supports (perhaps with the assistance of a job coach who specializes in working with clients with disabilities): hold a position as a greeter or hostess? work for a delivery service, where she gets to see people regularly? work for a local parks and rec department? use her love of music and dance to work in a theater?

Perhaps.

I don’t know.

But neither does this professional.

I’m willing to bet Sabrina can do something that is interesting and meaningful to her, and that contributes something of value. And I’m willing to bet she will.

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