Parenting with Disabilities Radio Tour

If you’re catching this new update to the long silent blog, you’re probably aware that I’ll be participating in a radio tour on parenting with disabilities (in just a few hours!). The schedule and announcement for the tour is below. If you’re joining for the first time from the tour or Facebook, welcome! I’ve been looking for a reason to return to blogging for a bit and this is a perfect excuse:) Parenting strategies for a toddler are definitely different than those for an infant and I look forward to sharing what has worked for us here. In the mean time, I’m grabbing some much needed sleep for my early morning radio wake-up call tomorrow. Here’s the press release for the event. It’s taken from an e-mail from Robyn Powell of the National Council of Disabilities. She’ll be joining me with the interviews. Until tomorrow~Kara

Did you know that parents with disabilities are the only distinct community of Americans who struggle, solely because of their status, to retain custody of their children? Removal rates run as high as 80 percent among parents with a psychiatric or intellectual disability. Help us shine a spotlight on the hidden hardships faced by parents struggling to keep their children, adopt children, or even access reproductive assistance.

 

On behalf of the National Council on Disability I’ll be appearing on several radio shows TOMORROW morning to talk about “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children” — the first report of its kind issued by a federal agency to examine the discrimination faced by the more than four million parents with disabilities in raising their families. Estimates indicate 6.1 million children in the U.S. have parents with disabilities. This amounts to nearly 1 in 10 American children.

 

The following radio shows will be live and it might be possible for listeners to call in:

Please tune and call-in in if you can.
To get your own copy of the report, please go to:

http://www.ncd.gov/publications/2012/Sep272012/

 

Thanks,
Robyn

Robyn M. Powell
National Council on Disability
Attorney Advisor
1331 F Street NW, Suite 850
Washington, DC 20004
rpowell@ncd.gov
202-236-9651

 

Dear Hannah

You are nine months old today-officially here with us longer than you grew and grew in my belly. Your journey post-belly has been an amazing one. I can’t believe how much you’ve learned. You started crawling about 3 weeks ago and you have never stopped moving! From the very second you put your arms out of your crib (which I still accidentally sometimes call your kennel but at least around here kennels are a nice cozy place!) to the moment you crash in it at night-you are ON THE GO! You’re sometimes so very very busy that you climb right over us to get to the next thing on your agenda. You love banging blocks together, playing pat-a-cake, Mickey Mouse Clubhouse, and of course…my nemesis…the dog food!

Our nighttime routine is my very favorite time of day. You splash and what sounds like yodel in the bathtub. When we dry you off, you become a complete maniac. You flap your arms and attempt numerous naked escapes after the poor targets of your attacks-Bailey and Obie! They are still your very cuddliest and funniest friends. In the few seconds that you take a breather, you love leaning against Bailey. You and Obie must have an array of inside jokes because he’ll often just come in the room and snort and you crack up!

My favorite part of the last few weeks has been watching you show us more of you. You crinkle up your nose when you’re being a dare devil and you like rough house play much more than me. You’ll also sit longer and listen to me read your books. You’re patient, laid back, and social. Aside from the occasional noggin bump, you hardly ever cry unless you are hungry or tired. You very much enjoy both eating and sleeping an let it known if we’re denying you either of these life necessities! Other than those few times, you are incredibly happy. You beam when we walk through the door and your new princess wave goodbye makes it incredibly hard to ever leave.

I predict that you’ll be close to, if not already, walking by this time next month. You seem pretty certain that my wheelchair frame was customized just for you-they do make the most perfect baby parallel bars for you to grapple and stand up for me to grab you up in my lap. Just a couple weeks ago, you’d pause between each step in the grab, grab, kneel, stand combo. You now do it effortlessly even from the side of my wheel!

I’m quite certain that you will never stop amazing me. Pride doesn’t really fully capture how thankful or blessed I feel to be your mom.Happy 9 months Hanni. We love you.

Night Owls: Must-have Monday

Now that Hannah’s slept through the night at least a couple nights in a row a few times, our nighttime routine is becoming easier and easier. It hasn’t always been this easy though! When we brought Hannah home from the hospital, she weighed just under 6 lbs. It was important that we woke her up to eat every 2 hours. She wasn’t fond of this NightOwl approach but as you’ve seen from her round physique, it worked! She gained an entire pound in a week and we were all free to sleep until she woke up hungry. Since then, she’s mostly woken up around the same time every night-4:30am.

The first week or so was rough. She’d cry, one of us would climb/crawl/otherwise stumble to our wheelchair, roll blindly to the kitchen, and make a bottle. Somewhere around the bottle mixing phase, she’d start crying so loudly that both bulldogs would wake up in a panic and follow us about wondering why we were clearly NOT meeting her needs in a timely fashion. I’d return with bottle-in-hand to find an angry baby who would usually spit up half of what I would then feed her due to her state of irritation. This was our routine until…..we found the (second) greatest invention ever. And we’ve all been much happier ever since!

My first mistake with our early routine was my refusal to make bottles ahead of time. I thought they needed to be exactly room temperature and wasn’t satisfied with how long it took to warm a refrigerated bottle. The second potential mistake was the distance between our room and the kitchen. This meant I had to transfer from the bed to my wheelchair in a total comatose state. I’m not the steadiest or most agile in our family and it could’ve ended badly if I wouldn’t have found a better/safer alternative. Here’s our approach now:

We make bottles ahead of time…alot of them. One of us usually makes between 8-10 at a time. We refrigerate them until they’re needed. I make sure there are always plenty available for whoever is watching Hannah during the day and we generally need 2 to get through the night. We keep these two bottles in the bedside cooler warmer that I’ve bottlecoolerwarmer deemed the greatest invention ever (just behind the wheelchair of course). The back part of the device is a low-tech cooler. You freeze the ice pack it comes with, place it in the container with up to two bottles, and the lid closes tightly to keep them cold. We make sure to keep the tiny vials of water filled (especially before bed). When Hannah needs a bottle, you just dump one of the water vials in the warmer, put in the bottle, and hit the button. By the time I change Hannah and snap the 3 million snaps that are on each and every sleeper, the bottle is ready! She’s learned the steaming sound and the whole process is so quick that she hardly ever cries anymore once she’s picked up from her co-sleeper.

This improved routine has made our nightlife much less dramatic and much more enjoyable. It takes a little prep work before we go to bed but once I’m there, I’m able to do everything she needs without transferring to my chair. A similar method could be helpful to parent(s) who don’t have the option to transfer independently. I have a pregnant friend without a disability who’s also added it to her registry now that she knows it works. Because I have no concept of pricing on baby products, I though this ingenious gadget would be really expensive. The model we have (similar to the one pictured) is under $30 (less than a can of formula!) and I got it even cheaper with coupons at Babies R Us. Since I’ve gone back to work, we’ve also invested in just a warmer for the kitchen. If you didn’t mind moving the warmer where you needed it (or always warming bottles in your bedroom), you could easily put your own cooler bedside and achieve a similar effect.

It’s exciting that we’re rolling into our roles as parents enough to start identifying tricks of the trade. We have a growing list of products, techniques, and approaches that do AND do not work for us. This post will be the first in a series called Must-have Mondays where I’ll share something that makes our lives easier at parents with disabilities. Many people with disabilities agree that it’s not always the most expensive or complicated device that is most facilitative of independence. We have very few (if any really) customized equipment to take care of Hannah. We’ve adapted typical baby gear, routines, and strategies to our needs. I’m looking forward to starting our weeks together by sharing what is working for us. I’m definitely still learning-every day in fact! So if you have a baby/parenting tip that made your life easier, please share!

Dear Hannah

Your 3 months (+1 day) old today! I better make this speedy because you don’t sleep nearly as much as you did even just a few weeks ago. When you’re awake, you’ll play by yourself for a little while by staring at your friend the (ceiling) fan or batting toys on your jungle gym. You’d much rather be held, talked to, or played with though. When you’re most active, you like to climb up me and work on your standing. Your face looks like it’s a real workout and your grunts are pretty comical. When we’re all winding down at night, you still love spending time admiring your friend the fan (again) and you absolutely adore your musical seahorse whose belly glows.

I went back to work this month and it has been unbelievably hard to leave you. I’m doing better though (in the crying while driving to and from work sense). I remind myself that you’re having fun and being cared for all day by people that sincerely love you. Our family is so blessed to have the help for me to finish my degree. You’ve done your part in easing my transition by being the happiest baby in the universe each and every morning. For an added bonus, you’ve started sleeping through the night 2 or 3 times a week now. When you open your eyes, you smile, coo, and squeal while I get you and myself ready for the day. It’s almost as if you know that I need those moments because you’re ready for a quick morning snooze by the time I leave for work. I cherish our mornings, evenings, and weekends now more than ever.

You’ve also become especially fond of your dinner time. You’re eating cereal every night now! You have strict demands for how quickly I should get you the next spoonful but as long as I keep em’ coming, you’re happy. Just yesterday you started working on holding your own bottle. I love feeding you though so you can take your time on this one. You can take your time on all that growing up stuff, in fact. As much as I love to see you learn new things, I’ve removed the phrase “I can’t wait for Hannah to…” from my vocabulary because I can wait-and I don’t want your milestones to fly by too quickly.  I took the same approach to summer this year-hoping that it could last forever. With the first feel of fall in the air and the very first few leaves falling, I can easily state that this summer with you was the best summer ever. I’m thankful for all the moments we’ve already shared and (almost) ready to see what lies ahead.

Happy Birthday Hannikins.

I love you,

Mommy

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Learning to speak Hannah

Some of us have been quiet around here (me-on this blog!) while others are a little more talkative. We’ve been enjoying Hannah’s oooh’s and awww’s and thought we’d share them with you. She’s JUST on the verge of laughing but has been making some pretty adorable squealing sounds while she’s figuring it out. Here’s Hannah…my almost 3 month old!

In other news, I headed back to work last week! I’ll be completing my internship this year, which is one of the last requirements for my Ph.D. in clinical psychology. The title internship is a little misleading because it’s 40+ hours a week and much more like a job than a practicum or internship. It’s been and is still a GIANT adjustment. I miss spending my days with Hannah but I also love what I’m doing. I’m learning to cherish my evenings and weekends and have begun the ongoing battle faced by so many families to achieve balance. So far-we’re doing well!

Our first review: Fisher-Price EZ Bundle

Hop, skip, and roll over to LI Kids to see our very first review. Courtesy of Wheeler Dad’s spectacular camera work, my demonstration skills, and a very cooperative baby, there are a couple of videos illustrating how a family like ours (or yours) might be able to use this new product from Fisher-Price.

I know some are curious about the review process. I’ll be working on a more formal disclaimer, but the short and simple version is this: We weren’t paid for our opinions, but received the product at no cost to try out and use how we please. Since we already owned most of the 4-in-1 that the EZ Bundle boasts (and as you’ll hear from the video, there are some potential snags for parents with disabilities), we were ecstatic to share our good fortune with two good friends expecting a little guy in a couple of months.

Let the folks at LI Kids know what you think of our review. If we’re a hit, we may have future opportunities.

Reviews to come….

We were recently approached by a friend to try out baby products and share our thoughts through reviews. I thought it could be fun and useful to other parents with and without disabilities. When talking with other parents, I’ve learned that what gives us (Wheeler Mom & Wheeler Dad!) headaches related to baby gear and baby care often does the same thing for people without disabilities-just to a lesser extent. So when we find a product that makes life easier, our able-bodied friends and family members usually agree! Our first product was the Fisher-Price EZ Bundle. I’ll post the link to the review site as soon as we’re published, but I thought I’d share a rather hilarious picture from the event.

Here’s Wheeler Dad, who for reasons unknown felt it mandatory to hold one of our remaining “It’s a Girl” cigars unlit in his mouth while constructing the baby equipment. You’ll also see Obie running amok and Hannah looking on from the tranquility of her swing….

We really enjoyed the experience so you might see more reviews in the future.

Our elephant: Does she or doesn’t she?

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the infamous too-small-but-it-has-elephants sleeper

Hannah loves elephants. Or maybe more accurately, I love them for her. One of my dumbest baby purchases was an elephant sleeper that she was only small enough for her to wear a couple time. I crammed the poor girl in the

thing…because of the elephants (and the cute ruffles on the butt)! Our friend Jess, a fellow OIer, sent her an adorable elephant and it watches over Hannah from the foot of her bassinet. My connection to elephants has a secret twist. It originates from the GIANT (but unspoken) elephant that sometimes occupies whatever room or space Hannah and I are visiting.

The elephant’s been visiting me long before Hannah joined me-in the concerned look of strangers who’d say, “Congratulations!” with their mouth but something completely different with their face. In the worries of a few family members who’d ask every question BUT the one they wanted the answer to the most, “Does she have it too?” Some people acknowledge the elephant-even if briefly. My nearly 90-year-old grandmother’s* first response to my “I’m pregnant” announcement was a quiet statement more to herself, “I hope it doesn’t get that OI in it.” She never spoke of it again, but I do admire her honesty in stating the worry.

There are lighter moments though. The sometimes ridiculous nature of strangers has given me the opportunity to laugh at the elephant a few times. When my mom and I accompanied Hannah to an ultrasound to check out her hips a couple weeks after her birth, the receptionist just kept repeating, “She’s SO healthy…..” “She’s SO healthy….” I eventually started wondering if maybe she thought we were there for the Urgent Care Clinic located next door. So I said, “Oh-she’s not sick. We’re just here to make sure her hips are ok.” She continued, “But she’s so healthy!?” I really think the woman would have been less astonished if Hannah had sprouted a unicorn horn from her head at that very moment.elephant-room1

The elephant popped out again yesterday as I ventured to Kohl’s for some back-to-work shopping for me. The woman checking us out asked the obligatory baby questions, “What’s her name? How old? etc. etc.” and then she said, “Wow-she’s SO big. She must have been SO big for your belly………” She then paused waiting for me to explain that of course I hadn’t actually given birth to Hannah. She must’ve been delivered by gnomes. Sometimes I let these awkward moments continue and other times I save the person with an explanation to the obvious question that the person’s not brave enough to ask. I let this woman simmer until FINALLY she said, “So did you have her the traditional way?” Because I don’t generally discuss such details with checkout staff, I said, “Yep.”

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Sleepy pose with Hannah's elephant from Jess

It’s not only strangers. I’ve also experienced another person with Osteogenesis Imperfecta ask me, “Did you make her the old-fashioned way?” As opposed to the new modern baby-makin approach!? Most of the time, I do have to smile. Our elephant is a jokester. Sometimes it can hurt though because OI or not, my Hannah is PERFECT. She’s amazing and even if she had that unicorn horn, I’d see nothing in the world “wrong” with her. I never want the giant elephant’s shadow to block any piece of her awesomeness. While these people’s minds are boggled that she’s healthy and happy, it’s frustrating that they don’t realize that kids with disabilities are too.

Our elephant’s amazing versatile too. There’s really no place he won’t go. He also shows up online, mostly through questions asked via private message but a few early photo comments to her pictures would have been more accurately worded as, “So does she or does she not have OI?” The truth is: I haven’t kept it a secret. But I also haven’t made enormous announcements as if it’s THE most important tidbit to be known about Hannah….because it’s not.

I can’t always effectively tell the elephant to scram. He represents our world’s continued insecurities with even talking about some things related to disability. In my own little corner of the web though, I can do my best. It’s an understandable and fair question, especially given the high likelihood that Hannah would have OI. There’s nothing wrong with wondering. It’s only bothersome when it feels like a giant looming question about something that is shameful.

Answering the Elephant

From as early as my very first few ultrasounds to as recent as today, Hannah shows no signs of Osteogenesis Imperfecta. She’s above average on all her growth charts, has no bowing, and no fractures. We know from genetic testing that she does not have WheelerDad’s Type IV OI. Testing for my Type V OI though was inconclusive. Type V is very rare and the gene thought to cause it hasn’t yet been identified. Because children with OI can inherit a vastly different severity of the condition from their parents, there’s a minimal chance that Hannah could potentially have an exceptionally mild case of OI. For that reason, she’s still monitored by the OI Clinic located in our Children’s Hospital. We’ve refused a bone biopsy because I see no reason for an invasive and painful test with no benefits. In a couple years, we’ll be able to x-ray her arms to see if she has the arm bowing that’s characteristic of Type V. It is sometimes difficult not to know with 100% certainty. The question, “Has she fractured?” crossed my mind when she cried a couple weeks ago after her shots. I know all new parents have worries though. Ours just have a distinctive flavor. Our plan is to watch, but not wait. With or without OI, she’s enjoying the love of the OI community. It’s a healthy challenge to learn to be at ease with uncertainty. When she looks back at her story someday, I hope she interprets the elephant as a sign that we have always fully accepted and entirely loved her with OR without a disability.

Landing pads

One of the keys for my husband (aka Wheeler Dad) and me to independently parent Hannah has been several of what I call “landing pads” placed strategically around the house. I’ve heard other parents wish for

another sets of hands, but we’re additionally challenged

with the necessity that at least one hand is always needed to push our manual chairs. We’ve figured out ways to carry Hannah around the house and out in public. It’s sometimes difficult to complete certain tasks though while we’re holding her. Here are the landing pads in our home that help us get things done:

  1. Baby in her swing
    Swingin and sleepin are favorite pastimes around here. Bailey occassionally brings her favorite toy (Alfie!) in hopes Hannah will throw it. Maybe someday!

    A swing. We use Fisher-Price Starlight Papasan Cradle Swing: Hannah usually hangs out here at the beginning and the end of our days. She loves the mobile and she’ll hang out there if I’m doing something in the living room, answering the door, doing laundry, or otherwise scurrying out. It holds her attention the longest of all the landing pads.

  2. A high chair. We use Fisher-Price Space Saver High Chair: We keep it just outside the kitchen and in the dining room so she can watch me while I prepare a bottle or sit with us while we’re at the table. She can seem most of our living areas from this height and she’s generally content if I’m within her sight. It’s about the height of me in my wheelchair so it’s a fairly easy transfer. This is another place she can “land” when I need to do something relatively quickly.
  3. A soft place to land: We use two different Boppy pillows. One is the traditional Boppy and the other is the newborn lounger Boppy. They allow her to sit up, lay down, or lounge and I keep them in whichever rooms we’re frequenting. It gives her a safe place to hang out on the couch with our dogs and the lounger is just high enough that I can put her from my lap to the floor before I also transfer out of my wheelchair down to the floor to pay.

    baby on boppy

    Perched in her Boppy lounger

  4. A bouncer: We use Fisher-Price Playtime Precious Planet Bouncer: This one is placed (quite strategically!) in our largest bathroom. She can bounce away while I’m getting ready in the mornings or (if she’s still awake) taking a bath at night.

One of the ways we’ve made our landing pads most accessible is by removing all the trays and things that hang in front to make getting Hannah in and out easier. Now that we’ve got our confidence and (more importantly) she’s developing the desire and skills to bat at toys though, we’re slowly putting them back. If this makes getting her in and out impossible when she gets heavier, we could find other ways to play and stimulate her though.

There are lots of other favorite places to play and nap around our place, but these “landing pads” are our most frequent go-to’s for a place for Hannah to sit safely so we can have use of both hands, our laps, or both! I’ve (obviously!) never been a mom without a disability, but I imagine landing pads would be relatively useful for them too. What do you think?

The perfect toy

What was your absolute favorite toy as a child? Play is a child’s form of work and toys that facilitate play without boundaries are a need-not a want-for children to develop to their fullest potential. My disability definitely selected my choice in toys. Barbie dolls drove me insane. They were frustrating to dress with two hands-much less with one in a cast! I didn’t like most hard and heavy toys because I knew they could hurt me. I remember loving My Little Ponies, but my all-time favorite were American Girl dolls. I also liked Care Bears. When faced with stares in public, I’d envision carebearsstare returning my own version of the “Care Bear stare”. No cool light beams ever shot out of my stomach, but it was a helpful way to cope.

Proctor and Gamble is a huge company centered in Cincinnati. I thought they primarily made toothpaste and toilet cleaner, but it turns out they also make toys! Not just any toys…one of their creators can actually claim “Invented the Care Bears” on her resume! This creator has teamed with a mom from the organization Reach for the Stars to design the “perfect toy” for kids with disabilities. And the best part? They want your ideas.

First, I do feel somewhat ridiculous even proposing the idea without narrowing the type of disability. Despite the many other random people in wheelchairs I’ve been confused for, we are NOT all alike. We don’t all look alike, think alike, or even like the same things. In scientific terms (because I’ve been slowly working on my dissertation again), we’re an extremely heterogeneous population. The proposal doesn’t specify what type of disabilities is the focus but Reach for the Stars is an organization for children with cerebral palsy and their families. They have a few other chapters across the country. Since I know the most about kids with Osteogenesis Imperfecta, my suggestions are intended for them.

I’d like to see the design of a “Hospital Helper”-a comforting toy that could somehow safely and securely accompany a child through a surgery. It’s not uncommon for children to take a favorite stuffed animal or a doll into an operation. It’s not always possible though because they are not sterile or several bed changes will be made between the time the child leaves for and returns from surgery. Usually though, there’s something (an IV pole, a chart, something) that makes the whole trip. The toy would need to be durable as it would ideally serve as a companion for a few years. It would need to be bright and colorful so it wouldn’t be lost in the hospital laundry. My husband’s still a little angry that the hospital lost his favorite blanket during one of his surgeries! The details of my “perfect toy” are far from finalized, but these are the types of suggestions P&G would like to hear. P&G isn’t new to the consideration of people with disabilities in its marketing and hiring practices. Their ranking as #3 in the top 10 companies for people with disabilities make me excited to collaborate with them.

Members of the Gimp Girl support group started brainstorming ideas during this week’s online meeting. Durability and simplicity were common themes. Others suggested designing common adaptations (like better handles for easier gripping) to make current toys more accessible. One member proposed a “Perfectly Me” line of dolls that would celebrate disabilities. I LOVE that idea!

TAKE ACTION

What would be your idea of the “perfect toy”? Any and all suggestions will be helpful. Leave them in a comment here or e-mail me at writekara at gmail dot com. I’ll compile the list and submit it to the individual that will be meeting with the P&G representative. When progress is made, I’ll share it!

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