self-advocacy

~

Things had gone downhill quickly. We’d made a gross tactical error, deviating from the plan. Sometimes Brooke can handle it. She can evoke the F word – Flexible! – but this wasn’t one of those times.

We were on our way to Toys R Us in search of a video. Katie suggested we stop into Five Below first. “They’ve got videos too, Brooke, but they’re cheaper than at Toys R Us. That means that we’d be spending less money if we found one there, and spending less money would be better.”

Brooke protested, but we pushed through, promising it would be just a quick peek and then onto Toys R Us.

The store was a nightmare. The music was loud and the shoppers were louder. It was crowded and chaotic. Anxiety bubbled up and boiled over within seconds. We couldn’t stay.

Brooke was still crying as we got into the car. Not good.

As I drove, I reached a hand back to try to soothe her. I knew that words would add fuel to the fire, but perhaps my physical presence might help. She looked at my hand, unsure of what it was doing in her space. She touched my palm with two fingers.

The parking lot traffic began to move again as cars made their way through the stop sign up ahead. I had to take my hand back to drive. I felt helpless. And miles away from my girl.

I heard a sudden movement, and the pull of a seat belt stretched to capacity. I looked in the rear view mirror, ready to hit the brakes and jump if that’s what I had to do.

What I had to do was watch.

Brooke had pulled herself as far across the back seat as the seat belt would let her go. She had looped her arm through her sister’s and had laid her head on her forearm, which was all that she could reach.

“Brooke, what are you doing?” Katie asked.

“I’m giving you a hug,” Brooke said.

“Are you okay?” Katie asked.

“Not really,” Brooke said through tears.

Katie slid over to meet her sister. She put her arm around Brooke.

“It’s okay, Brooke, we’re on our way to Toys R Us, okay?”

Brooke sniffled.

“It’s so very far away!”

I assured her that it was right around the corner.

“Katie, we would do the rarararararavs.”

Katie balked. The rarararararavs are a script – Magenta and Blue talking to each other in doggy voices. She hates it. She said, “I’d rather not do that, okay, Brooke?”

I cringed. Katie has every right to say that she’d rather not do something, and she said it nicely. But damn, right now? The kid is on the edge of Chernobyl. A little help? I kept quiet. It’s not her job. She can’t carry the weight of being the one who bends every single time.

“Please will you do the rarararararavs, Katie? It will make me cheered up.”

And there it was.

We tend to think of self-advocacy as group advocacy. We think of political agitation and legislative action. Of writing blogs and books and changing thought processes about disability. But you know where self-advocacy starts? In a car. With a kid who, for the very first time, has turned to her sister to say, in her own way, “I’m losing it, Sis. But I know what I need. A hug and a script will offer comfort. Can you help me please?”

And a sister who advocates for herself too and says, “One time, okay?”

And who does the script. And who doesn’t let go of her sister afterward, but instead tells her, “I love you, Brooke. Remember that, okay?”

*

Politics matter. Changing perceptions and laws and hearts matter.

But they all start with the not at all small step of recognizing and asking for what we need from those closest to us.

My kid did that yesterday.

And I couldn’t be prouder if she’d testified on Capitol Hill.

(And just to be clear, I’m pretty damned proud of her sister too.)

23 thoughts on “self-advocacy

  1. So thankful your sweetpea knew and asked for what she wanted. Her language may be expanding “horizontally” but her application of that language, her self-awareness and expression, seem to be growing vertically. Right up to the sky.

    Beautiful. Such grace in that story.

  2. I really, really, really, REALLY dislike Five Below. The store nearest me usually has someone smoking outside by the door (asthma) and the music is so loud that I just walked right back out.

    WHY do people need constant house!? I’m almost no longer functional because a 24/7 barking dog moved into this apartment along with rowdy kids and stupidly loud cars (the apartments are so old that slamming g doors, running kids, and vibrating cars knock stuff off or over). Not a complaint, sympathizing.

  3. This brought tears to my eyes. I feel guilty everytime I ask my 14 year old son to say the right thing just to make his sister, with ASD, stop crying or calm down. Siblings have such an important role.

  4. Love it! Both of your girls are doing awesome!!
    I wish all the time my girl had an older sib…her brother is 2 yrs younger and it is a lot to put on a 3 1/2 yr old. But there are times when I tell him…just answer her…it will make her feel better…even though it is the 10thtime she has asked the question. The other day she actually answered him appropriately and hesaid “mommy I didn’t know Kaity could talk!” 😦

  5. This hit me on so many levels. Every time I read a post from you, I cry…sometimes happy tears, sometimes out of empathy or camaraderie…but always a much needed and well-deserved release. Thank you for that. I have five children, three biological and two adopted. My oldest biological child was diagnosed ten years ago and my youngest adopted child was diagnosed last month. We opened a foster home to help children in crisis, but also to provide a hands-on experience in empathy for our son on the spectrum. Little did we know then that we would foster and eventually adopt a child who would receive the same diagnosis. There are no accidents, right?

  6. What an awesome post and a big reminder that my olderst daughter doesn’t need to shoulder the constant responsibility of doing everything her younger sister with ASD wants. It is too much. I will always be teaching her and helping her understand, but I should not always expect. I am so glad your little one is learning self-advocacy and Katie is such a kind and patient sibling.

  7. 5 Below = anxiety attack for me, too! Jess, the girls will be fine – always. I know it isn’t always this smooth for them but they have a deep, deep love for each other.

  8. I’m so proud of Brooke for asking for what she needs when she needs it and of Katie for meeting her in the middle. I know it must seem like Katie is doing all of the giving at this point, but I feel like they are forging a relationship that will become more reciprocal as Brooke matures. If only we could glimpse 10 or 15 years down the road…

  9. Those moments are are such a breathe of fresh air. I’m so glad your family has the ability to do this for each other. It speaks loads about the love you all share and its beautiful to be a witness on this side of it> Keep on keepin on!

  10. This is so awesome and it makes me happy because both of your girls were honest about their needs and patient with each other on them, meeting each other, lovingly. You are doing something right. Except for going into a store of sensory heinousness. That is not right for anyone, including you (even if it is below your noticing-threshold). Don’t let it happen again. 😉

  11. it’s like you said a few posts ago: love first. and sometimes that love has to be directed inward as well. great to see your sweet one taking care of herself, it’s such an important skill.

  12. You have amazing children, but you already know that 😉
    I hope to see things like this one day. While my oldest is the one we are going down this road with, I hope that one day, his younger sister will help him through anything that he may need.

    You and your family are truly an inspiration for me and so many others.
    Thank you

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