allison

Last night, Brooke’s fish died. It was sad. Allison had been around an improbably long time. Even as her tankmates had fallen away one by one, she had managed to carry on. Long after she should have expired, she was still happily swimming. We’d become convinced that she was invincible. She wasn’t.

Brooke cried. She told me that she was going to miss Allison. That she wanted her back. She told me that she felt sad.

I hugged her. I told her that I understood. Katie came in and hugged her too. As silly as it may sound, we all cried together. It was sad and death, any death, is far too raw a topic right now.

Brooke asked to flush Allison. I asked her if she’d prefer to bury her, but she said no. It was important to her to do it her way. And to be the one to pull the lever. That mattered.

We said goodbye and thanked Allison for being such a good fish before she disappeared into the great beyond.

Brooke came into my room for a while afterward. We cuddled together and she said that she was still sad. I told her that it was okay to feel whatever she was feeling. That losing a pet is never easy.

Katie came to me with a quiet question. “May I offer to buy her another fish, Mama? Please?”

I texted Luau at work to make sure he was on board before saying yes. Her face lit up when I told her to go ahead.

“Brooke,” Katie said gently, “would you like me to get you another fish?”

Brooke turned and looked at her with just a hint of a smile through her tears. “A whole lot of fish?” she asked.

Katie smiled at her sister. “Maybe two or three, okay, Brooke?”

They hugged and I cried again.

“You’re a damn good big sister sometimes,” I said as Katie walked by me back to her own room.

“Most of the time,” she said, then added,”At least when you’re looking.”

“Right,” I said, chuckling as I pulled her into a hug. “But when you’re good, you’re really, really good.”

The rest of the night passed without incident. Brooke was sad, but she was okay. She picked out her tiny advent gift from the elf hanging on her door and then read through her yearbook, just as she does every night before bed. My girl was alright.

Nearly five years ago, Brooke’s frog, Tayley, died. 

I had broken down that night and called Dr Dreamy begging for his help. I had told him that I didn’t know what to do.  That she was overcome and overwhelmed and I didn’t know how to help guide her. This is what I’d written that night:

She came toward me and butted me lightly with her forearms, still held out in front of and away from her little body. “Fight! Fight! Fight!” she yelled. I was taken aback. I had absolutely no idea how to react. “We’re fighting!” she continued as she came toward me again. “Fight! Fight! Fight!”

It couldn’t have been more obvious that she wasn’t trying to hurt me. She was stopping just shy of me or at most, touching me lightly. But her stance was painfully, frighteningly aggressive. Her entire body was ready for action. Even her jaw was set and tight. She was expressing SOMETHING.

“Fighting is MEAN.” she said loudly. “Do we fight?”

I snapped out of my daze long enough to answer her, “No, baby, we don’t fight.We love each other.”

I was lost. I had no idea where I was in the room. I’d lost my compass. I was watching this little person who I love more than life trying to tell me something, but for the life of me I didn’t know what.

Five years later, she has five more years of life experience than she had then. She has five more years of practice at self-regulation. She has five more years of gathering tools for identifying her own emotions. None of that can be discounted.

But the biggest difference that I see, that I have seen in nearly all of the amazing progress that my beautiful, incredible girl has made to date, is in her ability to communicate how she’s feeling, what she needs, and what’s important to her.

Over stimulation.

Under stimulation.

Physical dysregulation.

Emotional overload.

Fear.

Confusion.

Sadness.

Anger.

Anxiety.

Frustration.

Aggression.

As human beings, every single one of those things can be eliminated, mitigated or, at the very least, alleviated to some degree by our ability to communicate how we’re feeling, what we need, and what’s important to us.

It doesn’t make the challenges disappear. But it helps. Sometimes immensely.

There are so many vital areas of research in the field of autism and around the ways to best support autistic people. If I were queen of the world, the search for (and the universal adoption of) alternative methods of communication would be Priority One.

And if I were a mom of a young child newly identified as autistic, the exploration of every possible method of communication that might be appropriate and effective for that child would absolutely, positively be Priority One.

Because sometimes, simply having a safe and reliable way to convey, “I’m sad” can change almost everything.

In memory of Allison, she was a heck of a fish. 

9 thoughts on “allison

  1. Now, this is the wonderful post that I’ve been waiting to see. About Brooke and her journey, her triumphs and her struggles…. Supported by her amazing Mom, Sister and Dad. Glimpses into her world. Talking of advocates and research… Thank you Jess, goodbye sweet Allison…. We will meet again!

  2. This is amazing growth for all of you. I often use the phrase, “leaps and bounds” and it certainly applies here. Allison was indeed one heck of a fish. Brooke and Katie continue to amaze.

    Love you,
    Mom

  3. I started following you almost 3 years ago but haven’t always been a consistent blogger/ reader in all that time. I’m quite shocked to see just how far all of you have come since then. So much can change in a short amount of time. You’ve been through so many versions of hell and it’s incredible to see how all that uncertainty and pain is transforming into something a little more manageable, slowly each day. I can’t imagine how exhausted and aged you must feel but I pray as you all continue to grow that more and more life seeps into your bones and you feel young again

  4. I am so happy for all of you. My son does not have autism but does have ADHD and fairly severe anxiety, and I have learned so much from you. The ability to communicate feelings is so tricky for so many children, and it’s wonderful to see this progress.

  5. I have to say even as a neurotypical 32yo woman with a great vocabulary and many tools to express myself, I still have a hard time identifying and expressing these feelings… Your daughter is AMAZING!

  6. This year, we’ve experienced just how huge a difference a bit of communication can make. This time last year, my daughter rehearsed for the school Christmas play, was excited about it, wore her costume, but then from the dress rehearsal onwards she refused to go on stage or even into the room where the play was, becoming very distressed. We figured it was stage fright or just not knowing what a play was, what to do.
    This year? When they started rehearsals, she said to me, “But I won’t be brave to go on stage because everyone will clap me”. Turns out she can’t stand the sound of applause, especially when it’s directed at her. We got her teachers to agree to ask each audience not to applaud every song, but to save it all till the end, giving my daughter the chance to leave first. She went on stage, sang every word, did all the actions, loved every minute and even stayed for the applause – because she could cope with it knowing when it would come and that it wasn’t just for her. Such a simple, small thing. Such a hugenormous difference.

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