Monday, April 12, 2021

10 Ways Our Great-Grandparents Showed Us Love

693 words
5 minute read

Our great-grandparents were born in April.  Their birthdays were within days of each other.  In honor of their birthdays - and their birthday month - here are 10 ways they showed us love:

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1.  THEY READ TO US:

Honestly, I don't have memory of this, and that's why pictures like this one are so priceless.  Because I don't remember ever not knowing how to read, and I have no memories of being read to before I knew how to read myself.  But clearly, it happened:

[Image: Great-grandma, center, reads to Tara, left, and Tonia, right, age 2]

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2. ADAPTED THINGS FOR US:


***

3. TAUGHT US:

To this day, I remember being around six years old, and - on my own - writing numbers up to 100.  I was so proud, I showed my great-grandma.  She gently showed me my mistake.  

I'd written every number after 20, 30, 40, etc. as 201, 202 etc. not realizing I had to drop the zero.  

She taught me to print the letters p and q and never made me feel silly for not knowing something.

***

4.  FED US REALLY WELL:

We always at really well at great grandma and grandpa's house.  Homemade chicken noodle (or beef noodle) soup.  Turkey salami.  Raspberry dessert.  Pudding pops.  Fresh carrots or beans from Grandpa's garden.  

They let us get string cheese from the grocery store.  I still remember helping Grandma bake pumpkin chocolate chip cookies, though I'm pretty sure that only happened one time.

***

5.  BUILT US A SNOWMAN:


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6.  PLAYED WITH US: 

Every night, whether we were living with them, or just visiting, we'd join them at the table each evening for a game.  When we were younger, it was Farkle or Dominoes.  

But from about six years old on?  We played Skip-Bo - all four of us.  Grandma and Grandpa against Tara and I.  We were always linking pinkies over the cards and doing made-up spells for luck.  Grandpa, would pretend to zap us playfully and say: "No hexes!" 

***

7. SEWED FOR US:

Grandma was a pro at fixing our Cabbage Patch dolls (who we loved so hard their fingers and toes unraveled.)  

She sewed Velcro pockets for my walker, so I could carry things with me, and adapted our jeans with Velcro instead of snaps, so we could be independent in the bathroom.

***

8.  REMEMBERED THINGS WE SAID:

Long after I'd forgotten, Grandpa continued to tell this joke about a little girl who saw her bus driver's feet and said: "You're socks are all wrinkled!"

The bus driver said back: "I don't have any socks on!"

I thought this was probably a joke he made up, and was surprised when he told me, "You told us that joke.  You came home from school and you told us, and you laughed and laughed."

9.  BOUGHT US A COCONUT:

One of my favorite memories with my great grandparents was going grocery shopping with them.  On a certain trip in particular, we passed the coconuts.  

Tara and I (again, at around 6 years old and fans of Sesame Street) had heard there was milk inside and we wanted to try it.  Grandma agreed to buy it.

Later, at home, Grandpa broke it open with a hammer.  We were super impressed.  Until a clear juice came out...and it did not taste like cow's milk at all.

But they let us be curious.  They let us try things.

***

10.  SHARED MEMORIES OF THEIR CHILDHOOD:

We were visiting as teenagers, when Grandpa very casually told us that he could still remember the lines he was given in his kindergarten school play.  He was 5 years old in 1919, and very nervous, as he stood in front of a room full of adults and had to say the words:

As I stand up on this stage
My heart goes piddy-pat
As I watch the people wonder:
"Whose little boy is that?"

***

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Monday, April 5, 2021

How Does That Work: Interdependence in the Disabled Community

1,012 words
8 minute read

It's 2016.

I'm at the doctor's.  

This is not somewhere I go by choice.  I have enough medical trauma to want to stay away from anywhere medical forever.  But I've received a notice in the mail that tells me in order to keep living in the accessible place I am living, I need to go to the doctor to confirm that I still have CP...

...The disability I've had since birth.

I wait in the waiting room, trying to calm my nerves (trauma.)

An assistant calls my name, and upon seeing me in my wheelchair, gushes, "OH!  YOU'RE OUT WITHOUT YOUR CAREGIVER!  GOOD FOR YOU!"

This is problematic for so many reasons:

First, this assumes that a disabled person needs a caregiver to exist in public.

Secondly, If I had needed a caregiver, why was it seen as "good" for me to suddenly be without them?  

But I just nod and say, "Yup."  

(Because all the best comebacks come to me hours after the fact...and at this point in my life?  I'm not brave enough to say any of them out loud anyway.)

Finally, I'm in the office with the doctor.  I tell her the situation, even show her the notice.

"Where do you live?" she asks, perplexed.  (No doubt she's wondering what kind of place sends out these notices to their residents...)

I tell her.  "...It's accessible housing, for people with disabilities."

"Do you live alone?" she asks.

"No, I live with my sister," I tell her.

"Oh!  Is she disabled, too?" she wonders, thinking of my earlier statement.

"Yeah, she is..."  (Why my sister's disability status is relevant at my doctor's appointment, I have no idea...)

"...How does that work?" she asks, not even trying to hide her confusion at the idea of two disabled people living together.  "Who helps you?"

"We help each other," I tell her.

***

There's this...weird demand out there...to consume content that involves disabled people being helped...and more than that...being helped by nondisabled people.

I know there are many people out there who would be super eager to read about the time a church friend stood behind me and helped me keep my balance for something like an hour while I (at 4'11") tried to make a basket in an outdoor basketball hoop.

I know there are people who would love to hear how a friend once walked me into our inaccessible church to use the bathroom, holding my hand the whole way.  (The fact that I had felt pressured to choose one mobility aid, and left my crutches at home, would go unacknowledged.  The fact that churches are not required to comply with the ADA would go unacknowledged.)

People love to hear how I crawled wheelbarrow-style - pulling myself with my arms - out of my grandma's inaccessible tub, my legs slamming on the ground when they cleared the edge.

(Look at how she overcame her disability!  It's so inspiring!)

Disabled people helping each other?  

It's just seen as weird.

We're othered, even more than we usually are.

This can be seen even in the prompts I still have saved from back when I wrote for The Mighty.


Write about receiving help in an unorthodox way.

The phrasing implies that we are always the recipients of help...and more...that perhaps our ways of helping each other are unusual or unaccepted.

But the truth is that often, the disability community knows how to help each other in ways that make us feel the most validated.  The most safe.  The most seen.

***

Tara and I help each other countless times each day.  Some of these instances can be seen as typical divisions of labor in any household. (She does the dishes in the morning.  I do them in the evening.)  But some do not exist in nondisabled homes.

She does heavy lifting for me because I find it too strenuous.  I make phone calls for her to help lessen cognitive fatigue for her.

Some instances are even more seamless.  Pushing my wheelchair (when we went out in public back in the pre-pandemic days) allowed Tara stability when walking outdoors.  It also spared me the exhaustion of being overtaxed.  So, we both benefited.

We make each other's coffee. Tara makes mine because I cannot stand and pour water into the coffee maker without a disaster.  I make her cold brew to alleviate her executive dysfunction and / or other cognitive symptoms.

The things that are beyond difficult for one of us are usually easy or doable for the other.  We are happy to help each other with what we need.

There is no guilt.  There is no shaming about how one of us needs to work harder to be able to do a thing.  We understand limits and we respect them in and for each other.



[Image: Cups of coffee, side by side.  
One reads: NONCOMPLIANT DISABLED PERSON
The second: UNGRATEFUL DISABLED PERSON]



***

Interdependence differs from codependency in that the help moves both ways.

A.H. Reaume writes beautifully about interdependence in her essay for Disability Visibility.  

Upon reading her essay, I wrote:

"... Our LIVES as disabled people hinge on interdependence.  As she says, 'It is what we give each other because we WISH [nondisabled] people had given it to us.'

"Perhaps, that's why it is so particularly painful when we are ignored, dismissed, shut down and abused...because...for us?  It is so second-nature to love each other this way...and it's like...aren't we worth this?

"We can't stay alive without help, none of us.   But...nondisabled people experience the help they need, for the most part, without guilt, without an extra thought.  It's like "of course" they deserve help.  But disabled people are reminded time and time and time again...we don't.

"...To see this articulated. This essential piece of our culture so often misunderstood, so often framed as "too much"...because it's not.  We are not too much.  We love the crap out of each other. Because if we don't, no one else will."

***

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Monday, March 29, 2021

7 People With CP to Follow On Social Media

 176 words

1 minute read

[Image: a phone sceen with Facebook, Twitter and Instagram apps visible]



AlyssaMachelle - She/Her

I make cool art and talk about disability. 
RB: http://lyssamac.redbubble.com
IG: http://lyssachelle.art

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AmandaLeduc - AmandaLeducwriter, THE CENTAUR’S WIFE (2021) | DISFIGURED (2020) | THE MIRACLES OF ORDINARY MEN (2013) | Communications 
@theFOLD_
 | #CerebralPalsy | dog mom | she/her


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Crutches&Spice - she/her Black girl magic+disabled pride |MA Global Comms | my thoughts | #DisTheOscars + #AbledsAreWeird #ThingsDisabledPeopleKnow | Envelope imani.barbarin gmail

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Gavin McHugh - I’m an actor with cerebral palsy. I swim, surf, grocery shop, and love the beach. I’m Christopher on Fox’s 9-1-1 (monitored by mom)

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Keah_Maria - Writer/Author. Rainbow flagBi IconRainbow flag Sam’s Super Seats (fall 2022) The Pretty One(2019)lit rep: 
@abuckslater
 created #disabledandcute film/tv: 
@RachMiller
 she/her

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maysoonzayid - Haj Musa Zaid's daughter, Lucy's mom. #CDKO #DisCo 
@GeneralHospital
 Hate the tweet not the typo. RTs are not endorsements 1/2 of 'em are insulting me 

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TaraJean - 30-something. Disabled. Aphasic.  Give me all the calming piano music, books and soft textures.

***

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Monday, March 22, 2021

Soap Operas Taught Me Where Babies Came From But Not What Happened to My Food After I Ate It

636 words
5 minute read

Chanel Miller and Tiffany Miller's podcast Childhood with Chanel and Tiffany has been a bright spot since before quarantine.  

One of my favorite aspects of the podcast are the questions they ask the audience to get us thinking about our own childhoods.

In the second episode, they asked, "Where did you think babies came from?"

Well, I have an answer for them.  (And for you.)

***

By five years old, I'd already seen my mom pregnant twice.  I'd memorably caught a birth scene on All My Children, The Young and the Restless or General Hospital where a woman in a beige room, a long hospital gown and shoes screamed in pain.

"Why is she screaming?" I asked Mom at four years old.

"She's having a baby," Mom told me.

Right then and there, I decided, I was going to adopt.

***

[Tonia, left, and Tara, right, reunited with our Cabbage Patch dolls, Jennifer and Rainiya)

***


We played elaborate games of pretend with our dolls.  Birth trauma was not off limits.  Nothing was off-limits:


"Here! Sissy! Sissy! she says, going through the great tunnel, to get a new baby that's gonna be mine."


"There. She's sleeping."


"Yeah. She's just preemie."


"...Because she got a cold and she coughed on her. And she didn't even cover her mouth. She didn't even cover her nose, she just pachooed right on the baby, and didn't blow her nose so it just runned all the way down her neck, and all the way down to her sister! And all the way down to her toes!"


"'Oh, my precious little honey darling,' says her grandmother. This'll be her grandmother. 'She's so precious...'"


"She got sick.  She needs to get lots of rest. She's in the hospital....the same room where you get the baby out.  And I have a baby crib right here, all fixed."


"Why don't you go have a seat, Mother? Right here, and lie down. And watch your baby...and stay with your kid?"


While some of the particulars weren't clear, I knew birth - from the point of view of the baby - and a twin at that, had to be scary.  Trying to follow your sister out a great tunnel into the bright loud world, with sickness and early births was traumatic.


I was an informed child, okay?  


And I had a vivid imagination.


So vivid, in fact that I still recall what I was positive happened to all of the food I ate when I was around this age.


***

I was young enough to still be wearing a bib (which our family called 'aprons' because bibs were for babies...)  But I was old enough to have definite likes and dislikes.


Macaroni and cheese?  Like.


Chow Mein?  Dislike.


But whether I liked something or not, I had to eat it.  Such is life when you're four.


I coped by imagining what happened to my food after I swallowed it:


The food would drop, whole, into a big dark cave with plenty of space.  It fell from such a great height that everything landed with a satisfying splat onto the cave floor of my insides. 


There were two giant piles on either side.  On the left?  Every food I liked.  And on the right?  Everything I hated.


In my mind's eye, the food was separated by a tiny person with a shovel, who moved whole over easy eggs to one side and Malt-O-Meal to the other.


I was convinced this whole scenario was real, probably because I could not conceive of a world where all my food just went to the same place inside me...



Without even doing me the courtesy of factoring in whether I liked it or not.


***

Where did you think babies came from?


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Monday, March 15, 2021

10 Things No One Tells You About Aging With CP

443 words
3 minute read

TW: GIF warning

As I get older with CP, it continually feels like I am entering unknown territory.  


[Image: Elsa sings Into the Unknown from Frozen 2]


Cerebral Palsy is still widely considered to be a childhood disability...but most of us do grow up...and yet there is still so little information out there as far as what to expect.  As far as what is common.  

So here are 10 things no one tells you about aging with CP.

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1. Cerebral Palsy is not progressive, but it can change over time.  The wear and tear on our muscles and joints due to spasticity or just plain old growth does happen.  It doesn't mean you've done anything wrong.

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2.  This may mean you experience capacity shifts more often and more intensely than you did before. This is okay.

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3.  Even if you have been an independent walker earlier in life, you may find you need adaptive equipment in certain situations as you get older.  This is not a failure on your part.  This is your body communicating to you what it needs to be the most safe.

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4.  You might find incontinence to be more of an issue for you sooner than other nondisabled people.  I can't say what's usual for everyone, but I can say it's usual for me.  You are not alone.  Or bad.  Or an embarrassment.

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5.  You may begin to experience chronic pain as an adult, even if you never have before.  Staying as warm as possible helps me.  Finding affordable pain management options helps me.

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6.  Exercising can be tricky.  While movement is good for us, it's not always easy or possible in traditional ways.  Finding low-impact ways to work out has been key for me.

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7.  Finding medical care with a doctor versed in CP can be challenging.  (I've gone in for minor CP-related things and had to explain Cerebral Palsy to the person working in the minute-clinic...)

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8.  CP and trauma can go hand in hand (because many of us experience so much medical trauma, ableism and / or abuse.

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9. CP is often spoken of as a physical disability.  (That's how I understood it growing up.)  But it's our brains that are different.  We are neurodivergent.  We see the world differently...and that's okay.

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10.  As an adult, you might finally be free to figure out who you are.  You might love your CP and connect to your community.  Or you might find you identify with another part of yourself more strongly.  However you feel is okay.


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Friday, March 12, 2021

Christopher Diaz's "Glorious Disabled Anger" in 9-1-1 episode 4x08 "Breaking Point"

915 words
7 minute read

TW: GIF warning

I haven't been able to watch much current TV lately, because everything is about the pandemic and I find that super triggering.  

Luckily, Tara knows this, and she gives me highlights of the shows she watches.  This morning, she told me all about the most recent episode of 9-1-1 and specifically, Christopher's role in it.

If you've been around the blog for any length of time, you'll know that my love for Christopher Diaz knows no bounds.  Most recently, his skateboarding fall last season really resonated with me.  (Seriously, enough can't be said about the importance of authentic disability representation.

This season, Christopher's dad, Eddie, is dating.  (Ironically, he's dating Christopher's former classroom teacher, but as Chris is no longer her student, it isn't technically a conflict of interest.

Eddie arrives home from his date and his coworker and friend, Buck, says he's late.  That Buck has managed to negotiate with Christopher enough that he got ready for bed and into bed, but Buck was not allowed to tuck him in or tell him a story.

So, Eddie goes in, and Christopher immediately starts asking where his dad was.  Eddie says he was out to dinner and Chris tries to guess who he was out to dinner with -- which friend -- from where.  Eddie won't budge, so Christopher seemingly relents and asks for a story "--about your friend."

***

A few days later, Christopher is helping his dad make a salad and Eddie brings up his "friend" again.  He reveals to Chris that it's a woman.

"A girlfriend," Chris says, clearly upset.

"She's someone I like a lot and I think you'll like her, too."

"No, I won't!" Chris responds, angry.

"Okay, let's just talk about it," Eddie tries again.

But Christopher yells "no," and sweeps the entire salad bowl onto the floor where it shatters.  Then, he says, "I'm really mad at you," and walks out of the kitchen.

A couple of things about this scene:

First of all, we have what Tara has termed, Christopher's "glorious disabled anger" here.  Often, we'd see a scene like this followed up immediately by the disabled character being reprimanded or framed as wrong or bad for having legitimate feelings -- after their "no" is not respected.

Eddie just lets Christopher go to his room and slam the door.  Then he picks up the bowl.

And secondly?  It appears that Christopher is now walking unaided (at least short distances around his house) and it's just not a thing.  No one comments on it, on how he's getting "better" or how "he worked hard in PT" or anything.  He's just...walking around his house and it's usual.

And I love it.

***

In the next scene, we see Eddie talking to Christopher's teacher via video chat.  She asks, "He wouldn't even talk about it?" and Eddie responds, "No.  Total meltdown."  But instead of Chris's reaction being framed as unreasonable, his teacher says, "Maybe this is too fast," and "He's been through so much, maybe we should take a break."

Eddie is not quite as ready to break things off but has made it clear he's letting Chris cool off before he tries to talk to him again.

He goes to Christopher's room and finds it empty.  He checks the closet and doesn't find him.  A short but desperate search ensues, until Eddie hears his cell phone ring.  It's buried in Christopher's bed.

Buck is on the phone and reassures Eddie that Christopher is there with him.  (That Christopher used Eddie's phone to call himself an Uber and get a ride there.)  Eddie says he'll be right over.

There's no huge explosion of temper over what Chris "put him through" or how hard it is to raise a kid like Christopher.  Just Eddie, coming over as fast as he can.  Christopher is ten or eleven years old now, and while not old enough to take an Uber alone (in my opinion) this scene does a lot to show the dignity of risk and also the ingenuity of disabled people -- how we adapt to get ourselves what we need.

***

Buck tells Christopher that he heard about Chris blowing up at his dad.  Christopher says "I don't want to talk about it."  Buck is persistent saying that as long as he's here, they might as well talk about something, and that Christopher was there for him when he needed to talk, so he wants to return the favor.  (Not exactly healthy boundaries between an adult and a child but I do appreciate that Christopher is not only ever framed as the one being helped.

Christopher admits, "Dad's dating," and then says that he wishes he could forget because "people leave and I miss them" and "I don't want to miss anyone else."

Buck tells Christopher people do leave, but sometimes they don't stay gone forever.  That he will see his grandma and his friends again.  Christopher asks, "Do you promise?" And Buck does.

Then, Christopher stands to hug Buck and says, "You're a good friend."


[Image: Christopher stands and hugs Buck.]


Buck says, "Yeah, sometimes I am."

And the episode ends with Christopher's former teacher coming over, and Christopher smiling and greeting her with a hug.

***

It's just so refreshing and lovely to see Christopher's feelings honored and to see him reassured -- when we are so often told our feelings are not valid if we are not being positive at all times.

***

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Monday, March 8, 2021

Letter to Someone We Wish Better Understood CP

1,057 words

8 minute read


Hi!


We are so happy to hear that you have been helping your loved one in their recovery.  Support means so very much, and it is so needed.  Also, we understand that you are at a bit of a disadvantage, having never experienced CP within your own body.  We have, and we would like to share some insights to help you help someone like us.  Someone we all love.  


First, we’ve never had the [this particular] surgery.  But we have had numerous surgeries between us and we know how brutal recovery can be.  Having a support system (you) there is so vital for your loved one.  We cannot imagine having to relearn how to do things with an essentially new body - new legs - after 20+ years of accomplishing tasks another way.  (And with a brain that still has CP.)  


Do you remember when your kids started walking on their own?  They were babies.  Maybe toddlers (as we were.)  But they did not just get up and start walking one day with 100% confidence.  It took a long time.  A lot of small steps.  They stood holding onto something.  They cruised around it.  You walked with them, holding onto their hands for a time.  And you were always there for them, right?


[Image: A baby boy holds an adult's hand as he walks]


You didn’t say, “No, babies!  No holding onto that table!  No holding onto Mommy’s hands.  If you are going to walk you need to do it all by yourselves.”  That wouldn’t be fair to them, would it?  To skip the confidence-building that always having you there gave them.  To know you would catch them if they fell.  To know they could stand unsteadily.  Then cruise hanging onto furniture or you.  To always have your arms to toddle into.


This is not to suggest that your grown loved one is a baby or that she has regressed in any way.  But she is learning something essentially for the first time.  And keeping one’s balance is tricky business with CP.  She needs to know she’ll have you there, to build up her confidence so that she will feel safe enough to try balancing on her own.  Even though we are adults, we still need all the steps to exist on the way to a goal.  We cannot be expected to jump from A to Z without stopping at B, C, and so on.


Spasticity or not, your loved one (our loved one) still has CP.  And CP means they have a body that does not always cooperate with what they want it to do.  It is not a matter of willpower.  No matter how they want to succeed in rehab (hint: they REALLY do), they are also always contending with CP.  Which means muscle weakness.  Which means they might have trouble engaging just the muscles they need to use on a given task.  Which means as hard as they work to coordinate their body and their movement, it may not always work according to their plan, or best efforts.


Their balance may improve as their strength builds.  And one of the best ways you can help is by simply being there physically.  (Sometimes, when we are in a scary situation - like a stair with no handrail - we ask family members to “just come and stand here” in front of us.   Sometimes we need more than that.  Sometimes we need a hand or a lift.)


And doesn’t everybody sometimes?  You don’t do everything by yourself, right?  You don’t know how to do all the household repairs all the time, right?  You need help sometimes?  From your hubby?  From your sons?  From your loved one we are speaking of?  From professional repair people?  The thing is, that’s okay.  It is 100% okay to need help.


One of the greatest gifts CP gives is the ability to know ourselves and what we need. It means we are always thinking:  “Is there a way I can do this independently?  What can I try?  Is this safe for me to try on my own or do I need backup?”


It allows us to recognize our own limits.  And knowing our limits helps to ensure our safety.


If you were in a situation where a rock-climbing professional told you that you needed to descend a sheer rock face, but you could not have any help or equipment, would you do it?  Or would you say, “This is really unsafe.  I need some equipment and a trainer to help me.”?   


Our loved one is recognizing their own limits - needing your hands for right now - perhaps needing to try things other ways - is not them giving up.  It is them being smart.  


When we are in a situation that our brains read as “too much” for us to do physically and there is no one to help?  We freeze.  It’s a survival instinct.  While we freeze, though, our minds are always working:  “How can I move this massive thing from point A to point B?  I might have to put it on this cart to help me move it.”  So we get the cart.  And sometimes, just having the cart there, allows us to get “unstuck” and we don’t end up needing it at all.  We just need the visual cue that something is there, should we need it.


Because this is the case, starting with your physical presence, your hands - or whatever your loved one deems necessary - and then easing away once they feel comfortable and consents would help immensely.  It would help their body unfreeze.  It would be the first step in being able to tackle a balance task independently (eventually). 


Having CP means it takes a lot of concentration for us to move our bodies (or to keep our balance - standing still is hard).  If they are worried about falling or about not having you there physically, their focus is split.  And they need all their focus to be on the task at hand, right?


We hope you know we have only the best of intentions with this letter and we respect your loved one very much.  We count on this person as our closest friend.  You are so lucky to have them in your life.  We hope this helps you better understand how it feels to be them.


-Tara and Tonia

***

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