In 2009 Jess wrote, Welcome to the Club, a letter to help guide and ease the fears of parents whose children have been newly diagnosed on the autism spectrum. If you know anyone in this situation, please send them to this important post.
Her most recent efforts? The "light it up blue" autism awareness campaign whose letter to President Obama got her an invite to The White House for their Autism Awareness Month community event, an extraordinary experience which she then (again, generously) shared with everyone via her blog. (You can read about this here, in parts one, two, three, four, five, six, and seven.)
On the personal front, Jess is a mother to two daughters. Her youngest, Brooke, is on the autism spectrum; Brooke's older sister, Katie, is not. Katie is incredibly loving towards and helpful with her sister, and theirs is a beautiful story.
Jess is exquisitely sensitive to the needs of her children, to a depth rarely seen. And to combine that exquisite sensitivity with such powerful, moving, beautiful writing; and add in her strength of will, her community-building character? Is the reason why Jess and her blog are beloved and read by so many.
It is also the reason that while every other SNSS post so far has been original to this series, this one is not. Jess so wanted to participate in this series, as the relationship between her daughters is very important to her, but she just had too many commitments; it was impossible to add yet another plate to the many she is keeping spinning right now. So Jess asked if it would be OK to use a previous post of hers instead, as she has written often on this topic, near and dear to her heart.
I felt that Jess and her place in our community was too important not to include here, so I have chosen this beautiful post about the relationship between her daughters (originally published in April, as "what she needed") to share with you today for Special Needs Sibling Saturdays.
I am sure many of you reading this already know and read Jess, but for those who don't you are now in for a special treat...
Sisters - by Jess
She showed me the picture covertly so that Brooke wouldn’t see it.
“Look, Mama, I drew Brooke as Rapunzel in the tower and that’s me, climbing up her long hair to come save her! Don’t you think she’ll love it?”
Katie had been working on the picture for nearly half an hour before she finally decided that it was done. She presented it to Brooke with a flourish.
“Look, Brooke,” she said, beaming. “I made this just for you.”
Brooke took the paper from her and without so much as a glance handed it to me. “I don’t want it,” she said. “Sorry.”
Brooke and I had a chat. Ultimately, the best we could do was a parroted, “Thank you, Katie. That was very nice of you.”
Katie was crushed.
Later that day, Katie and our sitter, Julie had a special outing to the mall. For her birthday, Julie had gotten her a gift card to her favorite shop and had promised that they would hit the mall together to do some shopping. Katie couldn’t wait.
She’s been begging for a trip to the mall alone with a friend. (Not quite there yet, kiddo.) So the half-step toward independence meant the world to her. She had packed up her gift card and tucked her very own money into the wallet in her very grown-up purse.
They’d spent hours at the mall.
She came home carrying a shopping bag, flush with excitement. She pulled me in close for a secret. “Mama,” she said. “I got Brooke the best present EVER! She’s going to LOVE it! You know how she keeps saying she wants earrings just like me but we know that wouldn’t really work cause she’d try to pull them out cause they’d hurt? Well, I got her MAGNETIC earrings! Isn’t that the BEST? I’m sooooo excited!!! OK, shhhhh! Don’t tell her. I can’t wait to see how happy she is when she sees them.”
She reached into her shopping bag and pulled out a small, hot pink gift bag. She’d even thought to get a gift bag in her sister’s favorite color. “Brooke!” she yelled. “I got you a present at the mall!”
Her sister looked up from her drawing.
“I did. Want to see what I got you?”
Katie was beside herself. She couldn’t wait to see her sister’s reaction.
Brooke pulled the earrings out of the bag, set them on the table and went back to her drawing. “I don’t want them,” she said. “Sorry.”
Katie tried to explain. Perhaps she didn’t know what they were. Maybe she just didn’t understand. “Brooke, you can be just like Katie. See, they’re earrings, like mine. Look, Brooke, this is what you do with them ..”
Brooke let out a sharp shriek, then yelled, “I DON’T WANT THEM. SORRY!”
The dam broke. Katie couldn’t take it anymore. I talked to Brooke briefly. Said the same things I’d said earlier. Told her we’d talk about it again later.
Katie and I walked together into the kitchen, carrying the cast-off bag. I peeked inside. There were two other pairs of earrings in the bag that Brooke hadn’t even seen. I turned them over – $5.95 each. On her big trip to the mall, my girl had spent eighteen dollars of her OWN money on something she thought her sister would love. To no avail. Eighteen dollars.
I held my girl as she let it all out, the words tumbling over each other as she sobbed. “I just wish that there was a shot or a pill or something, Mama. Something, anything that Brooke could take that would make her autism just go away. I’m just so tired of it. I just wish I had a typical sister. I’ve just been trying so hard. I just want to show her that I love her but nothing’s working. Nothing.”
I said the right things. I did. I told her that she is the best sister that I ever could have imagined. I told her that she doesn’t always have to be, I told her that Brooke knows how much she loves her – that it would be impossible for her not to. I told her that she doesn’t always have the ability to show that. And above all, I told her that I know how much that hurts.
I told her that I understood. That from the bottom of my heart, I understood. I told her that Brooke might very likely come back to the earrings later. It had been a long day and she just might not be able to handle something new. But I knew that wasn’t the point anymore. When there was nothing more to say, I held her and let her cry.
Last night, after presenting the Autism Awareness mural to the mayor, we went out to dinner at a local mall. During dinner, Brooke needed a walk. “Ooh, Mama. May I take her, please?” Katie begged, just like she always does. “I promise I’ll be responsible!”
We’d never agreed before, but the mall was quiet and it seemed like a good opportunity for a first run. Brooke resisted. “No, Mama would.”
With some cajoling, she agreed to walk with her sister.
We gave them strict parameters and then watched them walk away. Two minutes in, Luau said, “You going or me?” I got up and headed in the same direction.
By the time I reached them, they were headed back toward me, walking arm in arm. Periodically, Brooke would spin out, then come back and re-attach herself to her sister. Each and every time she came back, Katie’s arms were open.
Brooke stopped walking in front of the entrance to a shop. I wondered if she was going to go in. Instead, she leaned into her sister and hugged Katie for all she was worth. Katie hugged her back, grinning from ear to ear. I felt like a voyeur as I feverishly snapped a picture with my phone.
They began to walk again, slowly, lazily. Katie kissed her sister’s head and said, “Thanks, Brooke, I needed that.”
And her Mama thought, “Me too, baby. Me too.”
As you can see from what have just read, Jess is an "Autism Mom" extraordinaire. I do not say this lightly: I have never yet met a parent more aware of exactly who each of her children are, and what they specifically need as Jess. She is an inspiration and a role model for me, truly.
And now? You really must go back to Jess's blog, a Diary of a Mom, and read more. She doesn't have a "best of" page, but that's OK because you can click on any month of her archives and just start reading and you will be astounded. But let me point you to a few specific posts, anyway:
For more about the relationship between her girls, these posts, from last October's "Spotlight on Siblings" week are wonderful: this pair about another sibling reaching out to Katie, big sister as little sister and little sister becomes big sister, are extraordinary. Also this one, and this one are truly touching.
And then, because telling her own family's story is not enough, here is a great post about how to help YOUR children: what siblings would like parents and service providers to know.
Whatever she is writing about, Jess so honestly and beautifully shares her love, her fears, her joys and her heartbreaks. Go, read! (And have a box of Kleenex handy, you'll need it.)
And of course, Jess is yet another SNSS guest who can also be found posting at Hopeful Parents. Her day is the 17th of every month.
Finally, you can find and follow her on Twitter and "like" her on her Facebook page, where she is, of course, building yet another support community.
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