Wishing Pokemon Were Real: A Story of Autism

There’s no band aid for this, no kissing it away, no telling her it will feel better tomorrow. Because it may not. Tomorrow feels very far away when she is shrieking in frustration, when she is nearly inconsolable. I can’t comfort my baby girl. No matter how many truths I tell her, no matter the amount of logical statements I make, none of it matters. Because she is stuck.

She is helpless and so am I. She lies on the couch crying. She didn’t get to complete her Pokemon game on the DS and she was “almost finished with it.” It was time for bed. She was so angry that she couldn’t finish it she just kept repeating, “I was almost finished! I was almost finished!” It was a pleading and an exclamation all in one. But I had to say no. Tonight she was beyond tired but refusing to believe us, screaming, “I’m not tired, I’m not tired at all!” Not once, but over and over.

By now her nose is running, she’s out of control, her nose is out of control and it is enraging her that she can’t stop her nose no matter how many times she blows. Her body is betraying her. Her eyes and head hurt now, because she is crying, but that just makes her cry more.

She recites a litany of losses from years ago, her rubber ducky in the creek, one of her Pokemon down the drain, a DS game she cannot find. It’s all coming at her at once, a tidal wave of loss, unfairness, sadness, anger, and helplessness.

I tell her what she needs to do. She needs to go to sleep. She screams that it’s boring. She doesn’t want to sleep. She hates sleeping. I sit next to her and rub her back, run my fingers through her hair, trying not to feel deprived myself since she is keeping me from sleep. She won’t take any of my answers as the right one, she rejects them all, trying to wear me down so she gets the answer she is pining for. I’m not playing along.

At one point she stops wailing and says, “I wish Pokemon were real.” Me too, I told her. Maybe if they were real, my daughter would have friends. “Which ones would you want to catch?” “Cyndaquil,” She replies. She launches into a monologue of facts and figures about evolutions and types, regions, hit points, trainers, legendaries. She tells me where she thinks they got it wrong. The eternal argument: “Pikachu is not a mouse Pokemon. He is a cat Pokemon. Mice don’t have pointy ears.” She can’t abide this epic failure of miscategorizing her favorite Pokemon.

We talk for 20 more minutes, mostly me asking her questions to keep her talking, to keep her from collapsing into sorrow again. She seems calmer. It’s been two hours. It’s so late. I’m so tired.

She starts screaming, repeatedly, “I don’t know what to do! What should I do?” Her only options are screaming or sleeping. She’s not down with that. She continues to escalate, hoping I will tell her something different the next time she asks.

Inside I was shouting along with her. Most of the time I don’t know what to do, and even when I make choices I am second-guessing myself. And I don’t know what I should do, because there really is so little that can be done.

These are the times when every single letter of the diagnoses’ initialisms are a separate backhand across the face.

I went back to bed, but I can’t sleep. My husband emailed me an article about Asperger’s while I was with Phoenix. I read it and the tears start to gather at the corners. It’s so her. All of it. Varying degrees in some aspects.

There are times when life gains a momentum that is manageable. Until it’s not. We suffer together, and alone, our mutual helplessness a load-bearing wall neither of us can break down.

 This was written a few years ago. Phoenix has continued to mature and life doesn’t look like this anymore. Take heart, special-needs parent, there is hope and it does get better. 
 
P.S. That is an actual picture of Phoenix. 
Tammy Perlmutter
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Tammy Perlmutter

Writer at Raggle-Taggle
Tammy Perlmutter writes about unabridged life, fragmented faith, and investing in the mess. She is founder and curator of The Mudroom and co-founder of Deeply Rooted., a biannual worship and teaching gathering for women. Tammy is a member of Redbud Writers Guild; writing blog posts, personal essays, flash memoir, poetry, and even preaching sometimes. She's an urban beekeeper and lives in an intentional Christian community in Chicago with her husband, Mike, and daughter, Phoenix.
Tammy Perlmutter
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Latest posts by Tammy Perlmutter (see all)

  • I’m glad you see hope, Tammy. My niece wasn’t diagnosed until she was 19. There were so many years of other diagnoses but my sister-in-law knew none were just right. It seemed a blessing to all to name this thing that seemed to have control. Yes, things have gotten better. There are still moments, but there’s an understanding to accompany the weary.

  • Stephanie Thompson

    Tammy, you know that my heart resonates with this tension: watching your child consumed by their pain and not being able to fix it. Sorry about that difficult time. As exhausting as the journey can be, Phoenix is blessed to have you and your husband loving her with the deepest parts of your soul-where Jesus lives and is at work.

  • Hey Tammy, just came across your post, and as a dad of an autistic son, this really resonated with me. Matthew is 16 now, but those first few years were really rough, similar to what you describe with Phoenix. (Including a time he pulled his pants down at Burger King around 8yo!) Like you, over time life with Matthew has gotten easier, and we thank God for that. Many blessings to you in your journey with Phoenix and other projects for the Lord!