A Moment in a Life with Autism

A Moment in a Life with Autism

It is 10 am. Snack time. Toys litter the floor like a colourful, haphazard obstacle course.

“Sweetheart, it is snack time. Do you want a banana or a fruit bar?”

A small boy looks up, wide-eyed, thoughtful. A tuft of hair, golden in the morning light, sticks up from his crown. His mother flattens it affectionately, but it stands back up to attention the moment her fingers lift.

“I would like a fruit bar. I have to have a fruit bar if H has a banana.”

“Ok. I will get you a fruit bar.”

“What will I have?”

“A fruit bar, sweetheart.”

“No!” distress seeps into in the boy’s voice. His neutral expression shifts to anxiety. Tears well. “Say what I said. Say what I said!”

His mother sighs, realising her error.

“Sweetheart, listen…”

The boy is not watching. His eyes are unfocused, his lip trembling. “Sweetheart. You will have a fruit bar. You have to have a fruit bar if H has a banana. Gorgeous boy…listen…look at mummy… You will have a fruit bar. You have to have a fruit bar if H has a banana.”

Finally, the boy seems to listen. His eyes – huge, blue – they are glazed with tears. But his frame relaxes. His arms drop to his sides, his teeth unclench.

“I said it bubba. Just like you. Would you like some juice too?”

“Yes.” His hands come together in front of his eyes. His fingers twist and mouth opens wide, shaking. He looks like he is in pain, but his mother knows. The resolution of the right words has pleased him. His excitement escapes through those flaps, those facial contortions.

“Ok. Good plan. I will get juice and snacks together. What a treat.” She smiles and ruffles his hair – her relief as palpable as his, though not as visible.

But, before her hand has left his head, he lets out a visceral high-pitched scream. It is the kind of scream that every parent dreads hearing. It is not a scream of defiance, not the scream of a tantrum or a scream provoked when a sibling will not share.

It is anguish. It is heartbreak.

It is the scream that makes your stomach flip and your head spin. It is a scream that makes you RUN.

It will not stop.

“You are joking Mummy! Say you are joking! Say you are joking. Say you are joking. You are joking Mummy!” The boy can barely breathe.

As the agony ebbs, the anger flows – in and out, desolation and fury, chaotic, tumbling. Upside down and inside out.

She does not know what to do.

“Bubba, stop, look at me.” She moves him close, crouches to his level, places his hands in hers, puts her face in his view. “Bubba, listen. You are afraid. You are angry. But I do not know why, sweetheart. Mummy does not know why. You have to try to tell me.”

The boy wrenches his arms away. He clenches his fists, grits his teeth. Pushes the things around him.

“You are joking Mummy!” he screams, pushing his baby sister aside as she comes to see what is wrong. His mother gestures for her to move to the other side, places her body between them. She takes the boy’s hands again. He is shaking.

“E, look at me. Hold on to Mummy. I know you are sad because I am joking. But I have forgotten the joke. What did I say that was a joke?” The boy’s eyes focus, just for a moment.

“You said we would have juice and snack together. But we can’t Mummy! We can’t! You can’t have them together!”

She lifts him to her lap. He begins to sob again, burying his head in her shoulder.

“Ok bubba. We can’t have them together. You don’t want juice?”

Another scream. She holds him tight. “Ok, ok, you do want juice. You do not want a snack?” He stiffens, thrusting his legs out, his head back. She struggles to contain him as his head hits her cheek.

On the surface, she seems calm. Inside, she is beginning to crumble. Why can’t he just have juice and a snack? What has she said that has been misinterpreted? Why does a everything have to be so complicated?

Boy with edphones

“You can’t have them together? But you want juice and snack? Both?”

“Yes!” He has been crying for several minutes now – his skin blotchy, his breathing huge, heaving sobs. She holds him tight, frightened to speak more, to ask more questions to try to solve the mystery.

After minutes that seem like hours, she speaks again. “You want juice. You want a snack. But I cannot get them together. Do you want to have them together, sweetheart? Do you want to hold your drink and snack together?”

“Yes! Yes! Et et et.” His words are mixed with strange syllables now. “I can have them together but Mummy can’t get them together!”

There is a moment of clarity. She holds his body out, moves so that he can see her face clearly.

“E! You want me to cut up your fruit bar and then pour your juice and then give them to you!” Before he can confirm, relief spreads across his face. She squeezes him close.

“Yes! Yes mummy. You have to cut the snack and then pour the juice. Not together! Not at the same time. You cannot do that. You must have been joking! You must have been joking!” He begins to sob again. Solving the mystery is never a total remedy, never the whole solution.

“Of course! Of course! I cannot pour and cut at the same time! What a silly Mummy! I will cut and then pour, gorgeous boy. I will cut and then pour and then give them to you. It would be impossible to do it at the same time.”

His whole body sags, relaxes in her arms. The agony is over – but it has taken its toll.

“Oh, listen my gorgeous boy. First I will cut up your fruit bar. Next I will pour your juice. Then I will give them to you. Not together. It would be impossible to do them together. What a silly Mummy! Impossible means it could never happen.”

He becomes calmer with each moment, though his breathing is still ragged. He struggles down from her lap.

“Impossible! Impossible! What a silly joke. Is getting juice and snack together impossible Mummy? Is it impossible? Getting juice and snack together is silly, Mummy, because it is impossible!”

“Yes, my love. Yes, it is silly!

Distress, always lurking, creeps in again.

“Et et et otot. Say what I said! Say what I said!” Teeth clench, fists form.

“Getting juice and snack together is silly, bubba, because it is impossible!”

He trots into the kitchen, arms flapping up by his ears, face contorted, half in ecstasy, half in despair. His mother follows – to cut his snack, to pour his juice.

It is 10.28.

And the next moment approaches.

5 Comments

  1. Mummy em
    23rd May 2017 / 6:08 pm

    This is so beautifully written.

    I can it imagine what you go through but you sound like you are doing a great job mama x

  2. Beks
    24th May 2017 / 10:25 pm

    Wow, reduced me to tears which doesn’t happen often, I could fell the frustration and sadness on both sides and I understand how that feels. You are both amazing. X

  3. 28th May 2017 / 9:09 am

    I think I held my breath the entire time I read that. I cannot begin to imagine the endless cycle your day must seem…that’s not true, I have an idea, Lewis is high functioning but sometimes I’m expected to be Columbo and work out what he means. I’m shattered, you must be exhausted…but they’re so, so worth it. The love you get back is tenfold xxx

  4. 29th May 2017 / 7:22 pm

    I feel your pain and anguish when I read your post. I know how it feels when things just ‘aren’t right’ I hope that Joseph gets to a point in the future where he can converse and explain his feelings rather than repeating what I say. It’s an awful feeling not knowing what is upsetting your child and nothing you can do to make it better.

    #SpectrumSunday

  5. 6th November 2017 / 11:03 pm

    Ah, such tricky moments. I know them well. You describe it beautifully. Calm on the outside, turmoil within.

    #spectrumsunday

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