Author Archives: Camilla

Be Seen and Be Heard – Go Lillian

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April 13 2024

I need to turn the spotlight on Lillian Darnell for a moment, as I am super proud of her.

She had a nurse appointment for a shot on Thursday. The nurse asked Lillian if she would get onto the exam table. Lillian began to tell her that she needed the step pulled out. Nurse didn’t wait for Lillian to get out what she needed to say, assumed she didn’t want to get up there, saying, “Oh, you don’t want to get up there? That’s fine.”

Lillian raised her irritated voice, telling the nurse that’s not what she said, and pointed at the pull out step, saying again that she needed it to get up there.

I kept my mouth shut, letting her set fire to the air in that exam room. You go Lillian. You go! Be seen, be heard. (Also, we LOVE nurses. They are amazing!)

**For those who don’t know, Lillian is my 22-year-old daughter. She has a chromosome deletion (18p-), autism, anxiety, and mild intellectual disability. She has articulation difficulties and a stutter, making her difficult to understand. The past few years I have been guiding her to correct others when they misunderstand her.**

 

Guest Speaker – UNR Family Engagement Class

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April 3 2024

I absolutely love when I get to be a guest speaker for the UNR family engagement class. It is an honor to share about my family and our journey through the system.

The students are both undergraduate and graduate, and come from a variety of backgrounds (e.g., general ed, special ed, early intervention, occupational therapy, speech language pathology, psychology). Some have a bit of experience working in special ed and with families, but the large majority are just learning about it.

Poetry – The Love of Laughter

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The Love of Laughter

We meet for coffee
Ordering our favorite, hot, steaming beverage
In a mug that fits perfectly into the hands

We begin catching up with one another
Sharing about life events
Future plans

Taking turns talking
Darting from one topic to another
Then back again to the same topic
Oblivious to the buzz and chatter
Of the cafe and people around us

We pause between words
Lift the mug to the lips
Inhale the intoxicating scent of that
Dark liquid gold
Take a sip
Feel it touch the tongue
And slide down the throat

Next the conversation takes a turn
For the lighter side
We share something that
Only the two of us would find funny
We begin to laugh together

What we laugh about
Is something that could be crushed
By the weight of sadness
Were it to be viewed in that way

Nevertheless, we laugh
This is how we have chosen to
Meet these life moments

Laughing til our faces hurt
Laughing til we can no longer form words
Laughing til we can’t breathe
Laughing til our stomach muscles contract with pain
Laughing til the laughter spreads to the people next to us
Laughing til the laughter
Sprouts wings
Fluttering down the lane
Infecting all in its path
Taking to the skies
Bringing laughter to the clouds
The sun, the stars, the moon

When the wave of laughter subsides
We take a deep breath,
sip our coffee
And think how good this felt

We open our minds
And see into one another’s soul
With this shared experience

Our sense of humor is our virtue
There is nothing that compares
to this type of joy shared together.

Camilla Downs, 2024