Posted on by Jennifer Johnson · 1 Comment

Questions

When you parent a child with a severe communication disorder, you ask yourself a lot of questions:

What caused this? Will she ever talk? Will it always be this way? Why is her behaviour so challenging today? Is she feeling okay? Did someone hurt her? How can I help her? When will she speak?

You buy PECS cards and visual schedule boards, attend SALT workshops, consider buying tech devices to help with communication, and maybe even learn Makaton or another sign language.

You spend hours researching online, worrying out loud with your spouse, and perhaps you pray. You pray for a word. A single word. And when you hear her say it, you rejoice, because maybe she’s already six years old and only just speaking her first word!

Then you pray for a short phrase. You long for it. Verbal communication. And one day she jumps on daddy in bed, shouting, “wake up wake up!” Maybe you cuddle at night and tell her you love her, then hear “I wuv you,” in reply. Your heart bursts with joy.

You pray for yes and no, for please and thank you, and eventually the words come. “No” was much easier for Beth. No was her favourite word for a long time, as she tried everything to avoid the things we needed her to do. But just lately, when she’s in a happy and well-regulated state, I’ve noticed her saying “yes, mama” quite often; tear-jerking for this mama.

Encouraged by the progress, you start to wonder if she will ever ask a question. Then one day she says, “daddy, are you okay? What’s wrong?”

This girl continues to surprise and delight us. One day, she will come home and tell me how her day at school went. One day, she will be able to tell me what activities she did and who she played with.

Until then, I rely on her teachers to communicate through the app. I rely on others to keep her safe throughout the school day. And I pray. She has come so far. What will she surprise us with next?

Original writing by Jennifer Johnson ~ Dedicated to Bethany

Posted on by Jennifer Johnson

The Middle Finger

For some reason Bethany has never used her index finger to point. She will either gesture with her whole hand or she will point with her middle finger.

Yes, you read that correctly. My seven year old daughter uses “the birdie” gesture to point at things. It happened again today. She asked for an apple as she gave “the birdie” gesture towards the fruit bowl on top of the fridge.

I gently reminded her to use her index finger to point. I don’t want her pointing with her middle finger.  But she doesn’t understand.

She will probably continue to do this into her teens. What if I’m not there to explain?

Google AI defines giving the birdie as “a slang expression that refers to giving someone the middle finger, which is a hand gesture that is generally considered offensive and expresses anger or disrespect. It’s a common way to show disapproval or displeasure.”

I fear the day that she tries to point at something and gets misunderstood.  The people present may not realise she is autistic and doesn’t comprehend rude gestures. And what if she does it to a police officer or something?

I am sure Bethany is not the only autistic person to gesture in a way that can be easily misunderstood, just because of the world that we live in. If only there were no rude gestures! If only I could explain it better. If only she understood!

So I’m telling people now: don’t assume the worst of people. Give people some grace when they upset you. They may have no idea that they did or said something that caused offence. They may be completely oblivious.

So I’m writing this for the record. Please don’t be offended if my daughter gives you “the birdie.” I can assure you, she didn’t mean any offence.

Gestures mean different things in different cultures too. We have to be careful when we travel to other places, lest we accidentally offend others.

Posted on by Jennifer Johnson

This Child of Mine

This child of mine,
Who does not speak except occasionally when she wishes,
And even then, her speech is basic or unclear,
Babble interspersed with occasional bursts of clarity,
She is non-verbal or pre-verbal or somewhere in-between.

This child of mine,
She is autistic and yet she is so much more,
She adores princesses and dresses, colour and laughter, and chocolate cake,
Family celebrations mean the world to her,
Although she gets overwhelmed and hides under the table.

This child of mine,
So full of energy, excitement, frantic frustration, and fiercely loyal love!
Running, climbing, splashing, and chasing the birds even into danger,
She is resolutely determined about her plans,
Which can be a good thing but also at times risky,
She sees only one way.

This child of mine,
Who adores music and loves to dance,
How is it possible that she can sing much more than she can speak?
Her melodies mostly pitch-perfect, although the words are blurred,
Decipherable only to those who know her well.
I think she will be a musician.

This child of mine,
I wonder, does she think in words that she can’t express?
Or does she just choose not to say them?
Does she see the world, her desires, needs, and dreams as pictures?
We have pictures for everything in our house,
Stuck to Velcro strips on the dining room wall,
Our picture exchange communication system.

This child of mine,
Fruit of my womb whom I have fed and cared for all the days of her life,
Watching and waiting for her delayed milestones,
I know her so well, and yet in many ways she is still a mystery to me,
Locked inside her mind,
Struggling to make sense of all that puzzles and overwhelms her.

This child of mine,
She is beginning to break open those locks,
I dare to hope and dream,
I prepare myself for disappointment,
Will she ever say mum?

Originally written by Jennifer Johnson, October 2023

Posted on by Jennifer Johnson

Panic!

On the evening of Monday, 11th November, a seventeen-year-old girl was arrested, handcuffed, and put in the back of a police car. There were two officers present, and one sat with her in the back. At some point in the journey, the driver pulled the car over onto the hard shoulder of the M5 motorway, something which should only happen in an emergency. Somehow, the girl, handcuffed, managed to escape the back seat of the car, then ran across the motorway carriageway, climbed over the barrier, and was tragically hit by a car and killed on the other side. Yesterday I read that the girl was autistic.

Questions flooded my mind: Why did the car pull over? Why did the girl run? Why weren’t the security locks in the back of the car switched on? Why was the girl arrested? Was she lost? Did someone try to take advantage of her? Was she scared? These are obviously matters for the police to investigate. Apparently correct procedures may not have been followed and the police force involved have referred themselves to The Independent Office for Police Conduct (IOPC).

I don’t know the answers to these questions, but I have an autistic child and an imagination that works overtime, which can be exhausting and emotionally draining.

I ponder:

A seventeen-year-old girl on a night out. She doesn’t “look” autistic. (What does an autistic person look like anyway?) Something happens on the night out which upsets her. She doesn’t respond calmly. There’s a disturbance while she melts down. She is angry. She is dysregulated.  She has lost control of her ability to reason. She needs someone to co-regulate and support her, to help her calm down. The police run in. They see only disorder and aggression. They arrest her with force, causing her to melt down further. They cuff her and shove her in the back of a car. One of them sits next to her.

She is scared.

She is overwhelmed.

She has no familiar adult with her. Maybe she wants her mum.

She is still dysregulated.

Maybe they shout at her to calm down.

One officer starts driving. Where are they taking her? What’s happening? She doesn’t know. She doesn’t understand.

She panics and melts down further.

It’s fight or flight. She is not in control.

Maybe she becomes aggressive with the officer in the back. Maybe that’s why the car is pulled over.

The car stops.

Fight or flight.

She tries the door. It’s open. She runs, still handcuffed, terrified, with all her mental faculties impaired by panic.

It didn’t end well.

It rarely does.

I’ve seen enough TV documentaries and dramas to know how the police treat “criminals” when they arrest them. They tend to fight force with force.

But perhaps this girl wasn’t a criminal. Perhaps she was just a teenage girl arrested for a misdemeanour. Perhaps she was just an autistic child arrested for having an autistic meltdown.

My heart is scared. This could be my daughter in ten years.

The police have got to do better. The world has got to do better. We must learn how to deal with people in a way that doesn’t exacerbate the situation. We need less bulls in china shops and more training and understanding about how to calm people down and defuse emotionally charged circumstances.

I realise I’m just speculating and imagining the possibilities. But you can see how the situation may have developed.

I am sad for this girl. I grieve for her parents and any siblings. What a tragic loss of life!

I hope there is a thorough investigation. I hope that sincere apologies are made. I hope there is better training in the police force as a result. I hope for a change in culture in the way disabled people are treated in these situations. I hope. And I pray.

Written by Jennifer Johnson

November 29th, 2024