Monday, October 31, 2016

Let's Talk About Speechless 1x05 H-A-L--HALLOWEEN

This week, on Speechless, Dad, Jimmy, reveals his one true talent: designing family costumes around JJ's wheelchair.

[Image is: Lovely orange pumpkins.]
Though I had a wheelchair by the Halloween I was 8, I never used it to trick-or-treat.  I always used my walker instead.  And though I had great costumes, my favorite was a rather simple robot costume, because I felt that my walker added to it, rather than detracted from it.  So I would have been all about any costume that integrated my adaptive equipment, but I never really got to explore that.

The last year I ever trick-or-treated, I was only 10 years old.  Where I lived, the infamous 1991 Halloween blizzard was already dumping snow on my home state but my sister, my brothers and I all still wanted to trick-or-treat.  We wore winter gear over our costumes, and my dad carried me to every house.  (Thanks, Dad!)  

Needless to say, I can't exactly relate to the notion of family Halloween costumes that seamlessly incorporate a wheelchair.  Definitely by the time I was the age of the DiMeo kids, Halloween traditions were long past (and no wonder!  All that trudging through a blizzard carrying a 10-year-old!)  So I was right with them when they made their own plans for the night rather than dressing up in Jimmy's family costume of the year.

JJ wants to go to a party with friends, and basically invites himself over.  (Sometimes, you have to be proactive!)  His friends say of course he can come, they just weren't sure if he would be able to.  He and Kenneth arrive (I'm honestly not sure how JJ gets into the house) and JJ asks for beer.  Kenneth is sure he has misspelled "soda" but JJ insists.  Finally, he starts asking Kenneth for random things, and asking the kids at the party to give him beer in the moments Kenneth is not around.  He gets drunk and ends up "slurring his words" as he tries to spell.

Maya and Jimmy punish him (for the first time!)  JJ laughs as he is lectured and Maya is relived that "at least he's a happy drunk!"  Ray and Dylan (whose Halloween plans have also gone awry) need help from Mom and Dad respectively, and then lament the fact that it's Halloween and they haven't had any candy.  Jimmy says he knows where they can get some, and they dress up in their family Back to the Future costumes (with Kenneth as Stevie Wonder) and try trick-or-treating at 1:45 AM.  (I guess JJ's grounding does not officially start until the following day, as he is magically well enough to happily drive the DeLorean costume into the night...)

I liked how this episode showed that JJ is a typical teenager.  I really liked how he used his laser pointer to get at Ray when he was angry, and also to get the attention of kids at the party.  (You use what you've got!")  All in all, a pretty strong episode!

Did you watch the Halloween episode of Speechless?  What did you think?

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Monday, October 24, 2016

Why a Drawing of a Line of Kids Stopped Me In My Tracks

It was a typical Thursday and Tara's turn to write to our young friend, who has CP just like us.  Because she's often in a rush to get out the door and go to work, I tell her I'll get the letter in an envelope, addressed, stamped and mailed, just leave it on the table.

So, I read the letter (because we alternate writing, both of us like to be aware of what's already been said so we don't repeat ourselves.)  It was a cute little anecdote about how all the kids were to be off school that day, and how busy my sis imagined her day to be because all the kids would be hungry and bored.  I told Tara I thought it was cute, including the drawing at the bottom, which depicted a stressed-out looking Tara womaning the register, and a long line of children, who are waiting to pay for their goodies.

It was after she left for work that I studied the picture more carefully, and saw that in a line of seven kids, one used a wheelchair and another used a walker.  Both carried their money independently.  Both kids were smiling.

[Image is: Tara's drawing at the bottom of her letter: depicting the above-described line of 7 kids.  One says, "Can I have pizza?" while another says, "I want an Icee."]

I loved the picture so much, I asked her if I could blog about it and share it.  So, with her permission, I am.  Why?  Because representation of people with disabilities is rarely so seamless.  So thought-of, so respectful.  I love it.  I love it because it shows we are a part of the bigger community.  It shows we are happy.  It shows we are independent.  It even shows my sis (with invisible disabilities herself) doing a job.

It's rare and it's awesome, and I'm sharing it because I think you might think it's awesome, too.

Do you?  Let me know in the comments...

***

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Monday, October 17, 2016

CP Survival Guide

With winter coming, CP related issues (spasticity, spasticity-related pain, slipping, etc) are at an all-time high.  My sis, Tara (who tweets @TaraJean) came up with the idea for a CP Survival Guide, especially handy for the winter months.  I eagerly jumped in to help and so did our friend K, (who blogs at Transcending CP.)  So, if you have CP, or you have a loved one with CP, check out these recommendations:

Note #1:  These recommendations are not to be taken as medical advice.  We are not doctors.

Note #2:  This is not a sponsored post.

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OILS & OINTMENTS ETC.



Lavender oil (recommended by Tara)

This is one oil we dilute ourselves to use. You can pretty much use any carrier oil to dilute (though you do not HAVE to dilute lavender oil - we choose to as our skin is sensitive). We use olive oil simply because it's cheap. Fill glass bottle with carrier oil, then add several drops of lavender oil. Shake to combine.

To use, spray on tight or painful muscles. Rub in. (Also helps with anxiety!)

Lavender essential oil: $7.85 on Amazon
Olive oil: $4.89 at Target
Glass spray bottles (12-pack): $11.99 on Amazon

(You can do the same with eucalyptus oil, which helps with spasticity.)

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Pain Relief and De-Stress oils (recommended by Tara)

These oils come ready-to-use in cute little rollers. Pain Relief smells light and citrusy, while De-Stress is more herbaceous and almost grassy. These are spendy, but an 8 ml bottle will last for months.

To use, roll on tight or painful muscles.

Pain Relief: $29 at 21drops.com
De-Stress: $29 at 21drops.com

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Mentholatum (recommended by Tara)

If you only take one thing away from this post, know that Mentholatum is miraculous. This ointment is good for everything from relieving intense spasticity to clearing sinuses and sinus headaches! Smells like eucalyptus and menthol.

To use, coat tight or painful muscles liberally.

Mentholatum (1.76 oz): $4.99 at Target

***BONUS: Use all of these things together for maximum relief!***

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Absorbine (or Absorbine Jr.) Back Patch (recommended by me.)

This is particularly helpful for when your spasticity is so bad it is painful.  (Used mostly in winter, but also when tread wears off your shoes and you have pain as a result.)  It says BACK patch, but it is useful on painful heel cords and pelvis in addition to back.  It has a very strong smell (a bit anesthetic + menthol.)  This is helpful because it's a combination of menthol AND gentle heat that lasts consistently for up to 8 hours per patch.  Usually not more than one is needed to resolve a pain issue.

To use: Open package.  Remove patch.  Carefully remove plastic film from adhesive side.  Stick to (unbroken/unburned) skin.  (May want to shave first, depending on if it needs to go on a leg.)  Peel off after 8 hours, whichever way feels most natural, least painful.

Absorbine (or Absorbine Jr.) Back Patch  $1/each at our local dollar store.

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Heated Massager (recommended by K)

My mom actually bought this to relieve back pain, but I found that it works amazingly well to ease tightness in my legs as well...so we have both fallen in love with it. :) I just place it on top of my legs or behind my knees and let it work its magic. I've never been much of a massage person in the past, but my legs feel so much looser after a few minutes of using this. (Side note: foam rollers and muscle roller sticks are also great at easing spasticity!) 

Available on Amazon for $39.99

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Blister Band-Aids (recommended by K)

These were a saving grace for me all throughout college! My CP gait means that I'm prone to developing blisters on my feet, and once I discovered these squishy band-aids, I couldn't live without them. Just apply them over the blister and they provide cushioning that prevents further irritation and helps guard the wound from extra pressure. They might seem a little pricey, but in my experience, they're totally worth it, and they're fairly water resistant, so they stay on even after you've taken a couple of showers. 

$4.29 for a pack of 6 band-aids at Target

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SOCKS & SHOES ETC.



Dr. Scholl's Diabetic & Circulatory Socks (recommended by me)

SO GOOD for cold weather and for NOT waking up with intense spasticity.  Got consistently cold feet and legs?  These babies are SO soft and comfortable, and are knee-length.  Not too thick.  Do not get wet after a day in shoes.

$9.99 for a 2-pack at Target

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Legwarmers (recommended by me)

It's hard to keep your legs warm, especially as the weather starts getting colder.  Legwarmers like these add an extra layer of warmth (great to keep spastic heel cords happy.)

$9.99 at Target

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Adjust A Heel Lift (recommended by Tara)

For those with leg length discrepancies - these lifts are each 1/2 inch thick but layers can be peeled off as needed if you need less of a correction. I wear a size 8 woman's shoe, and the medium size lifts are perfect and fit in most sneaker-style shoes.

Warwick Enterprises Adjust A Lift Heel Lift, Medium (Pack of 4) - $19.45 on Amazon (Size Medium)

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Skechers for Work Women's 76536 Sure Track Slip-Resistant Shoe (recommended by me)

Part of keeping intense spasticity in check is having a good pair of shoes.  The most important feature when you have CP is good tread.  That's why slip-resistant shoes are the best.  (Even better if you can find a pair that is also supportive and lightweight.)  Feel free to include your favorite shoe options here,

Around $69 at Amazon

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KEEN Women's Presidio Shoes (recommended by Tara)

These are super comfy, true to size and supportive and they come in so many colors! (Rare for CP shoes!) While not certified slip-resistant, I do not slip in these shoes except on wet floors.

Available on Amazon from $43.42 - $115.00. (Or at the KEEN website for $110)

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I've had awesome luck with Clarks shoes, and these boots are no exception! I bought a pair in my freshman year of college and couldn't be happier with them. They are very supportive (and I usually do up the laces snugly for even more support), really comfy, and they have excellent traction for icy and snowy days. I can't even count the number of times these boots have stopped me from falling flat on my face. I love how they look, too. :) As an added bonus, since they're waterproof, they can double as rain boots too (I still haven't found CP friendly rain boots, but these worked well for that purpose!). 

In terms of durability, these lasted me about a year and a half of heavy use (i.e., wearing them most days whenever it was snowy, icy, or rainy) before I wore a hole in the right toe, which is usually where my shoes break down first. My CP gait is really rough on shoes, so I was really impressed by how long they lasted, and I immediately replaced them with the exact same pair! ;) 

Available lots of places (Google them!) but the cheapest I saw was QVC.com, $99.98 + $5 S&H

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CLOTHING & BAGS ETC.


IZ clothes (Wheelchair clothing) (recommended by me)

This collection is fantastic, especially if you are in a wheelchair and have CP.  I have worn their shirts (so comfy) and their jeans (which I am wearing in the picture above) are AMAZING.  All their clothes are designed specifically to hang nicely on seated people.  

Clothing comes in Men's, Women's and Ungendered.

*While the main sections are quite spendy, I recommend going to the sale section and browsing there.  Living on a budget, clothing there is much more affordable.

**NOTE:  IZ is sadly going out of business.  As of now 12/16, they are doing some big sales, so if you want to ensure you get some of their amazing clothes check them out while you still can!

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Bell Breeze 300 1/2 Fingered Biking Gloves (recommended by me)

In high school, I asked for wheelchair gloves for Christmas.  I don't remember where I got the idea, but my parents got me a pair of blue biking gloves that protected my hands from wheel burn going down steep hills and the giant ramp at school.  When I wore through that pair, I got another, but after high school, the wheelchair glove need fell by the wayside, but the truth is I forgot how necessary they are and how much they help.  These are not bulky, you can feel your rim but you can also spare your hands blisters and friction burn with a simple pair of gloves like these.

Available at Amazon: I think these were maybe $10.

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Sojourner Bags Woven, Fabric Fanny Packs (recommended by me)

These fanny packs are amazing!  Found by chance while looking for a birthday gift for a friend with CP, we ended up getting our own, we were so impressed.  Though it does not look like it, these fanny packs are durable and super spacious.  They can accommodate awkwardly shaped things like accessible parking stickers, wheelchair gloves and so much more.  Fanny packs like these are great alternatives to purses or unwieldy bags, which can throw off our balance, and can allow for independence in being able to carry your own money and personal items.  We have given them as gifts several times over by now, and they are well-received by people with mobility issues due to age or disability.

Available for $18.99 each with Amazon Prime.

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Quilted Knapsack (recommended by K)

This knapsack has been a lifesaver for me! Purses are difficult for me to keep on my shoulder and I like to keep both hands free whenever possible for balance. I bring this quilted knapsack/backpack along whenever I go out with my friends, and I've also used it for work and trips to my college dining hall. It has a magnetic button closure, a drawstring tie, and several pockets and zippered pouches so that I can securely carry my wallet, a water bottle, and whatever else I need when I'm out and about.

Several of my (able-bodied!) friends have gotten a knapsack of their own after seeing how handy mine has been. :) The brand of this particular knapsack is Tinsley Blake, but I don't think it's in production anymore (I found it at a thrift store for $5 many years ago). However, I've seen many similar quilted knapsacks that work just as well (Vera Bradley knapsacks are nearly identical to this one, but I know there are lots of less expensive alternatives too!). 

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EQUIPMENT:



Fetterman Tornado Rain Tips (recommended by me)

These crutch tips have been lifesavers, as my crutches originally came with very ordinary crutch tips that did not do much to prevent slipping.  These not only make me feel more secure when walking but they also rotate with your movement so they are easier on your shoulders.  I tried the plain Fetterman tips and quickly upgraded to the rain tips because of the added security.

Available on Amazon for $49.95

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Folding Shopping Cart (VersaCart) (recommended by Tara)

Do you struggle to carry grocery bags, or laundry from place to place?  The VersaCart not only provides plenty of room for multiple grocery bags (or a giant laundry bag + detergent) it is water resistant, and has a cover to ensure your items will not get wet.  Instead of having your balance thrown off by large bags, the VersaCart allows you a place to store them AND stability to help you keep your balance. Easily assembled, collapsible and lightweight!

Available at Amazon for $69.95

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I didn't always have a shower chair.  Before I knew such things existed, I made due without them.  In college, I found a simple bench (no back, and insufficient slip-proof "feet").  I found this particular shower chair about 10 years ago, and it is perfect for me.  It's sturdy,  It doesn't move unless I move it myself.  I has handles built into the seat, and also a back rest, which I NEED in the shower.  It's everything I need in a shower chair.  I never worry while I am using it.  I always feel secure, which is pretty amazing, for someone with balance issues in a slippery environment.

Available at Amazon Prime for $44.76

***

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Thursday, October 13, 2016

Let's Talk About Speechless 1x04: I-N-S--INSPIRATIONS

This week on Speechless, JJ and Kenneth go out on the premise that JJ will be able to go out and do things he chooses.  Without him, Jimmy, Maya, Ray and Dylan go paint-balling and enjoy themselves tremendously.  Meanwhile, JJ and Kenneth begin to accomplish everything on JJ's list: getting hot dogs in LA, for one:

[Image is: a long hot dog on a bun with lots of ketchup and mustard]
While in line for a hot dog, an elderly woman comments that they should not have to wait in line and waves them to the front.  Another couple offer to pay for their hot dogs because of how "inspirational" they are together. Thus begins Kenneth's quest to take advantage of as many disability perks as he can.  JJ enjoys getting free admittance to a baseball game, and choice seats, and throwing out the first pitch.  (He also demands the player's glove.)  After all these things, JJ prefers to just enjoy the game, but Kenneth is up singing Take Me Out to the Ballgame to the fans.

Kenneth has more plans and ignores JJ when he says "enough."  Not only that, but Kenneth takes JJ's letterboard off his chair for no discernible reason (other than perhaps he does not want to hear that JJ doesn't want to keep getting random freebies.)  Kenneth puts the board in a backpack and leaves the bag in the parking lot before driving away.

JJ is rightfully angry and Kenneth figures out belatedly that JJ's board is missing.  They find it and JJ tells Kenneth "You took my voice.  You don't get to do that."  Kenneth promises to never do it again and then lets him drive the van around an empty parking lot.

I was so beyond disappointed in this.  First, because it's supposed to be JJ's day.  It's supposed to be about what JJ wants.  JJ wanted hot dogs from LA.  JJ wanted to see a baseball game.  Instead, the episode turned into what Kenneth wanted and left JJ to teach him a lesson and then be allowed to do something totally dangerous to make up for it.  It's a disservice to JJ but also to Kenneth.  It seemed vastly irresponsible and out of character for Kenneth to do something as disrespectful as this.

And I don't know about anyone else but watching the DiMeo's have fun without JJ spoke to every single moment I was hospitalized as a child and was sure that in our absence, my family was off having a great time without me.  I understand that JJ was supposedly having fun, too, and it was funny to watch, in moments.  The more I watch of the show, though, the more convinced I become that it's not for me.  It was clearly made for able-bodied people, by able-bodied people.  I'll keep watching because I want to support actors like Micah getting work and representing characters with CP on TV, but I'm going to watch the show without the hope I once held out for it.

Did you watch the episode this week?  Share your thoughts below!

***

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Monday, October 10, 2016

There Is Nothing Romantic About the Chase (And Other College Tales)

This past weekend, I talked to my youngest brother.  He's in college right now, and I assured him that if he was ever feeling overwhelmed, he might feel better knowing some of my college adventures.

After two years at a local community college, Tara and I moved an hour from home to go to a larger university.  By the time I'd been there for five months, it was old hat, but I was having some unexpected problems.

Namely, the disabled guys on campus.  (I was the only girl who used a wheelchair that I remember, and there were at least two or three of them.)  Being young, and naive, I saw one guy - around my parents' age -  sitting outside of one of the campus buildings one day and decided to say hello.  We chatted a bit and I continued inside for a bite to eat.

Needless to say, that was the wrong thing to do.  From then on, every time I went to that building, that guy was there.  He'd smile and say hi.  I'd say hi.  It was fine, at first.

On Valentine's Day, he approached me while I was eating.  "These are for you," he said, indicating something on his tray.

I glanced down.  A small box of four chocolates.  I was never one to turn down chocolate, but this was starting to feel a little weird.

"Happy Valentine's Day."

[Image is: a bigger version of the box of chocolates I was presented with that day.]


"Um...thank you.  You really didn't have to do that."

I glanced at Tara.

"Tom," she said, trying to lighten the mood.  "Where's my candy?"

"This isn't for you.  It's only for her," he said definitively.  He turned his attention back to me and waited.

"That's really sweet.  Thank you," I said, hoping he would leave.

When he did, I thought that was the end of it.

A week later, when I was alone, he approached me again, with something else:

"This is a picture of me before my accident."

Whoa.

"Yeah...I see that."  I answered, feeling more and more uncomfortable.  This was getting way too deep for me.

He obviously thinks we're more than friends...

"I never show anybody this but I want you to have it."  He pushed the picture toward me.

"Listen...  That's really nice of you, but it's not right for me to have this.  You said it's really important to you.  You need to keep it."

"Oh.  Okay."

A long and awkward silence fell until he filled it again.

"I was wondering...do you wanna go out to eat sometime?  Or we could go see a movie together?"

Oh God...

"I'm actually not looking for a relationship right now."

"Just a movie sometime?  No one goes with me," he said.

"I have a lot going on with school.  I'm sorry, I really can't."

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That night, as most nights, I stayed up late doing homework and talking to Tara.  At one point, I made some popcorn, which meant I had to move the dish from in front of the microwave.  I set it on my pillow (not a lot of surface space in the dorm...)

Hours later, it was bedtime and I moved the dish back, before launching myself full-force into bed.  Oblivious to the fork that still lay on my pillow, my shoulder landed on its handle, and jackknifed the tines up as I brought my head down to rest on my pillow.  I felt a sharp pain just below my eye.

Perfect.  Tom would not leave me alone and now, I had accidentally stabbed myself in the face with a fork.

What else could go wrong?

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Well, Tom decided to initiate the chase.

I'd never experienced this phenomenon the way it usually plays out: a guy pursuing a girl who is saying no (because they are convinced that she doesn't know what she wants, and really means yes, I would love to date you.)  I especially had never experienced the chase quite like this:

Tom started cruising up to me as fast as his power chair would take him (a bit like someone speed-walking up to you, it feels very intense.)  I'd say hi.  He'd laugh and block me, as I tried to manually maneuver around him.  "I really have to go," I'd say and attempt to pass him.

He stayed firmly in my path, a smile on his face.

This sounds funny, but if an able-bodied guy did the same thing: followed a girl around campus and refused to let her pass him every time they interacted?  That wouldn't be funny.  That would be stalking.

Needless to say, if you are feeling stressed about school, perhaps these stories will bring a smile to your face.  When you're overloaded with schoolwork, just remember:

At least you aren't being relentlessly pursued by a creepy 40-year-old or accidentally stabbing yourself in the face.

***

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Wednesday, October 5, 2016

Let's Talk About Speechless 1x03: B-O-N--BONFIRE

So, it's week 3, and I'm still pretty bummed by how Speechless is going.  The pilot episode was so promising and since then, I've been waiting for an episode that measures up.  This week, I did like Dad's comment to Ray about how when you hear that your kid's been diagnosed with something, nothing matters except that he is okay.

In this episode, JJ's classmates (the upperclassmen) are excited about the annual bonfire on the beach, a tradition after the big football game.

[Image is: Kids gathered around a fire at the beach at sunset]


JJ can't go to a bonfire on the beach, since, as anyone who uses a wheelchair knows, chairs and sand don't mix.  He makes a joke to the kids at lunch, to hide that not being able to go, actually is a big deal.  He goes home, let down, and nods at the flyer in his pocket, which his mom finds and reads.  She says "You can't go to this," and then takes it upon herself to talk to the principal, who cancels the bonfire on the beach.

Instead, they have an extremely subpar bonfire in the gym.  The kids decide that if they really respect JJ, they'd treat him like anyone else, and be angry that he caused them to miss out on the bonfire.  Kenneth says JJ's mom shouldn't interfere but JJ admits later he did want her help.  In the end, Mom helps him get his friends back by faking that the opposing football team tied him to a goal post.

My biggest issue is that JJ is seeming more and more like a prop as time goes on.  In this episode, he was blatantly used as a "snowplow" to move the family's garbage at their old house.  When Mom accidentally leaves off the word "bathroom" from his communication board in favor of words like "Kanye," it's played off as a joke.  (Only Mom knows the substitute phrase JJ will use when he needs to use the restroom.  This is a huge red flag and a dangerous situation, because Kenneth has made clear he absolutely will always help JJ in this way, but he can't if he doesn't know JJ needs to go.)  Kenneth is talking more as his own character, which is fine, in and of itself, but JJ is often left silent in the background.  Kenneth takes it upon himself to speak for JJ in situations, but not interpreting what he is saying.  More often now, Kenneth is just assuming what JJ might want to say.  Not to mention Mom's suggestion for getting JJ's friends back is super objectifying and more than a little worrisome.

I was hopeful that the bonfire could be moved to a location where everyone could attend.  Instead, no one got a bonfire and it was made out to be JJ's fault.

Come on, Speechless.  I want to keep liking you.  But you're making it really hard.

Did you see the episode this week?  What were your thoughts?

***

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All About CP and Me

In honor of World CP Day, I have a gift for you:





This is a free e-book that I wrote which explains CP in a way that is easy to understand, and not scary.  I originally wrote this in the hopes of helping kids with CP be able to easily explain CP and how they would like to be treated to their classmates.

If you would like to read the story, all you have to do is click on the link above.  Please share with your kids, friends and family.

Have you read All About CP and Me?  What do you think of it?

***

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Monday, October 3, 2016

Dear Parents Whose Baby Has Just Been Diagnosed With CP

Dear Parents,

Chances are, you are still adjusting to this.  Your baby was just diagnosed with CP.  Maybe you had an idea of what that was already, or maybe you had no clue, and were frightened by the doctor's words.  By what they could mean for your child, and their future.

You've heard enough medical jargon, and I don't know a lot of medical jargon, so you won't find that here.  What you will find (I hope) is a sense of reassurance.  That's because I'm an adult with CP...and once upon a time, my mom heard this diagnosis.  Twice.  For me and my twin sister.  Back then, there were no resources for families like ours, and my mom was very young.

She still made it work.

That's how I know you can, too.  Because you have tons of resources.  I hope this letter will be one.  Know that it does not come from a place of judgment, but one of love.  Know that I want the best for your baby.

Here are some things you should know:

1.  You Have an Awesome Baby:

CP does not make your baby one-dimensional, or a monster.  CP is not a punishment because you did something or didn't do something.  Sometimes, things just happen.  Your baby is still your baby, and your baby needs you.  They need your love and your acceptance.  So, hold them.  Read to them.  Talk to them.  Bond with them.  Your baby will feel secure with you, and you will feel even closer to you baby.

2.  Connect to Adults with CP:

While it may be second-nature to do a Google search when you get home, and quickly network to find other parents of kids with CP, don't forget about the amazing resource adults with CP can be.  You absolutely need the love and support of other parents who are on the same road with you, but connecting with adults who have CP can be a life-changer for your baby.  We know what it feels like to have CP, physically and emotionally.  We can suggest adaptations that worked for us that will make life easier for your baby as they grow.  Don't be afraid to ask questions.

3.  Know That CP Effects More Than Our Muscles:

Be aware of the subtler things that you may start noticing as your baby gets bigger.  Educate yourself on things like place blindness and startle reflex, struggles with depth perception, and even mathematics.  All of these might be things your baby will deal with as a result of CP.

4.  Start Becoming Aware of Your Own Biases and Ableism:

One of the best things that you can do as the parent of a child with CP is to start recognizing your own prejudices surrounding disability.  This may be new for you.  You may not have given the subject a lot of thought before, but the time is now to start thinking about it.  If you have a healthy view of disability, of adaptive equipment, of your child's body and what it can do, that will be the most valuable thing you can pass onto your child.

5.  Presume Competence:

Speak to your baby, your toddler, your child, the same way you would to a typical child of the same age.  Baby voices are okay for babies, but when you start expecting your typical baby to listen when you say no, for example, expect the same of your toddler with CP,  While developmental milestones may lag, or come to pass in a different way than you were expecting, you can teach your child to behave themselves.

[Image is: Tara and me sitting side by side in an easy chair, around the time we were diagnosed.  We are smiling]
Know that your baby will have an amazing life.  Know that whatever caused the diagnosis, CP will be the only reality your baby knows.  Contrary to that being a tragedy, it will likely feel as normal to them, as being able-bodied feels to you.

We are not mistakes.

We don't blame you.

We love you.

Resources (A Place to Start)

All About CP and Me (free eBook)

You Asked, We Answered: A Cerebral Palsy Panel (Transcending CP)

Growing Up With a Disability: The Early Years (Ellen Stumbo)

Cautions and Kudos for Able Parents Raising Disabled Kids (What Do You Do, Dear?)

What Is Ableism? (Ellen Stumbo)

Tonia's Big List for Learning About Disabilities

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