Invisible Obstacles Series

Courage & Voice – A Light in the Tunnel, Part 3

 FROM THE INVISIBLE OBSTACLES SERIES

Courage & Voice

LIGHT IN THE TUNNEL, Part 3

 

“Speak up – even if your voice shakes.”

Maggie Kuhn

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Mother on cell phone, viewed from inside car

[I/D: Sherri coordinates rink schedules on her cell phone while closing the car trunk. Aidan and Pam watch her from the back seat.]

FALLING THROUGH THE CRACKS

“If you don’t stand up and fight for what your child needs, especially in school, it does not matter what surroundings you’re in – you’re not going to get it. “
 
“I had to speak up and ask for the testing to be done the first time I thought there was an issue. And the second time, three years later, when it was supposed to happen again, but had fallen through the cracks. Because they aren’t going to offer it up. You have to speak up.“

 

Sherri is grateful for the life she and Aidan have – they have privileges many don’t.

Skinny and wide-eyed, Aidan looks like a little elf. He’s a healthy white boy, in a metropolitan suburb, with a reliable family and access to quality education and healthcare. When he fidgets in the class, he’s less to get labeled as a troublemaker. When he runs down the sidewalk, the neighbors won’t be calling the police. How we help kids facing these additional obstacles is an important discussion for later.

But the question now is not what she has, but what she does – what did Sherri do that parents with those same resources don’t? How did Sherri and Aidan learn to get school resources, divert his skills to confidence-boosting sports, and keep him from falling through the cracks?

Sherri has a hard time asking for help.

It doesn’t come naturally – she’d rather take care of everything herself. But she knows Aidan needs more than a good parenting.

Even if she didn’t work full-time, Sherri can’t be at school with him to manage his classwork, and she can’t be with him day and night after school, keeping him on task for homework – not all on her own.

Sherri had to learn how to ask for help – and keep asking. No matter how uncomfortable she is – she has to do the work.

 

Blonde woman smiling

[I/D: Sherri smiles and looks off-camera]

TALKING TO STRANGERS

“I had no clue who I’m supposed to talk to. So I had to call the school, and, to the lady who answers the phone, a total stranger, and say “I think there’s something going on with my child, and I’m not exactly sure who to talk to.”

“And then – it’s a group of people that you have to say all of this to, “This is what I think is going on. he needs some kind of help, but I don’t know exactly what he needs. I need help from you. I need you to look at it. I need you to test it, I need you to do something with it.

When I registered my son for public school, there were no pamphlets on what to do if my kids have disabilities.

There are no invitations and spontaneous offers to accommodate kids who aren’t keeping pace with the rest of the class. Schools just don’t have the resources to offer extra help unprovoked.

So when we realize we need to step in and ask for those extra resources – they’re not going to hand them over without question.

Sometimes, we get lucky. Sherri has found a school that is willing and happy to work on accommodations to help Aidan learn.

For many families with disabled children*, it can be a long hard battle. Many families can’t just ask – they must demand accommodations and access to education. They have to push back, they have to hire lawyers, sue the school, hound the administration. Parents who can afford to, often quit their jobs so they can advocates for their child’s rights and safety full-time.

Asking (or demanding) evaluations, customized learning plans, and accommodations isn’t easy. It’s uncomfortable. It’s confusing. It’s not easy for anyone.

Dog stealing sock from boy with mother in background

[I/D: LJ pulls Aidan’s sock from his foot while Sherri looks on from the sofa.]

THE DISCOMFORT OF ASKING

“I feel uncomfortable asking for lots of things.”

“And the worst part for me is that – when I’m uncomfortable like that, I flush from about here straight up, and I can feel it, so here I am laying all this out, and my face and my chest are on FIRE because I’m bright red. It’s horrible. I don’t have a poker face. Nope. Gives it away.”
“You have to lay out all the things that you have seen go on with your child that you don’t think is helping them in any way and that is hindering them learning. I had to ask for all of it.”

 

Sherri practiced speaking up and asking for help – consistently and loudly enough that Aidan gets the services he needs. It didn’t matter how uncomfortable and awkward it was for her – she powered through her own comfort zone, because that’s what her son needed.

Aidan, meanwhile, has been cultivating his own skills – he’s learning how to adapt in an education system designed for kids who naturally sit still and focus. He’s also found ways outside the classroom to put that lightning-fast Ferrari brain and boundless energy to good use.

 

…Find out how Aidan turned disability into a super-power in Part 4: Seeing Possibilities

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*Most neurodivergent people (including myself) prefer identity-first disability language. Find out why here.
[H/T: The Body is Not an Apology]

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This session is from the Invisible Obstacles Series. Families in the Invisible Obstacles series provide a glimpse into daily life while navigating adversity. Names and locations of minors may have been changed to protect privacy. Permission & quotes attributed to Sherri L. unless otherwise specified.

If you enjoyed the Invisible Obstacles Series, find out how to support Ashia’s do-goodery projects on Patreon.

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