729 days

In my 945 days post I shared my victorious first outing alone with my son.

We hit a new milestone today. 

729 days ago Oliver started daycare. We were really lucky to have our cousin Brittney care for him until he was 8 months old.  The thought of leaving this sweet face alone with strangers all day broke my heart.  So the very first morning when we dropped him off I sobbed like a baby. 

Over the past two years we have established a routine.  Since my job was downtown and parking was a small fortune, my husband and I started carpooling. We'd ride together, drop off Oliver and then go to work.  This was perfect since I could not carry his carseat and I liked being part of the drop off experience. 

I wanted to know his teachers, ask the questions my husband never would and be able to see that our boy was in good hands.

Most of the time this was ideal.

However, there were days when I got out of work early. My son was sick and needed to come home. My husband had to travel for work.  I wanted to be able to swing in and pick him up but I couldn't.  It was so annoying. I was constantly arranging help or waiting around on others.

Today I decided on a whim to try and get him myself. He's older now. He listens fairly good and can walk with me to the car himself. His teacher knew this was a milestone so she peeked around the corner to make sure we got in the car okay but let us fend for ourselves.

WE DID IT.

I told Oliver about the awesome team we are as we drove home and snapped a quick shot while waiting at a stop light. He loved it and shrieked, take another mama!

Yeah, we probably could have tried this sooner, but the routine we established when we first became parents has become life. It's just what we do.  I need to remind myself more often that I can be more independent now and try new things with Oliver alone.

I saw this quote on Facebook today and it seemed fitting.

You must always remember. You are braver than you believe, stronger than you seem and smarter than you think.  -Christopher Robin to Pooh Bear

clever clasp

Like most people, I am not a fan of asking for help.  I love gadgets that make it possible to do things myself.  I willing to bet most ladies out there have struggled putting on a necklace or two, but it's really hard when you have "AMC hands" on top of it.

I hate to say it but once and awhile infomercials sell some really good stuff. The hands-free dryer I mentioned in my Things That Rock post still is one of my favorites. 

Have you ever used the Clever Clasp?  It is honestly one of the best things out there. You hook the magnetic pieces to the ends of your necklace and then you can avoid having to clasp your necklace shut.

Some might need help getting the magnets hooked to the necklace, but after that you are free to change your necklace as much as you want...without help.

No more going to bed with a huge chunky necklace because you can't get it off...not that something like that would ever happen to me!  {wink}

Here's a really terrible video that highlights the amazing Clever Clasp.  My camera cut off the "clasp" 75% of the time but watching it back made me laugh...  I don't know if As Seen on TV sells these anymore, but I looked on Amazon and saw a bunch for really cheap. 

 

 

Amazing AMCers: Meet Nichola Smith

I recently “met” a fellow AMCer and despite the fact we live in different countries, we were instant buds. Through our chats via messenger and email it was like we were the same person. She understood me. While every AMCer seems to have their own unique spin of symptoms and severity, we still shared much in common.

Nichola found me on YouTube and when she showed her flatmate the video of me doing my hair, they laughed since she wondered what the heck Nichola was doing when she found her lying on the floor doing her hair for the first time. It feels good to know there’s a group of girls out there who share my ponytail woes.

Without further ado, let me introduce you to Nichola Smith, a 30-something gal from New Zealand. She is a nurse who focuses on the education side of the profession. She is the epitome of the word amazing.

Her life motto is “Use Your Voice.” We are given a powerful voice that WILL enable others to achieve, and the voice she has is no quieter because of AMC.

I asked Nichola a few questions about her life with AMC. Here’s what she has to say:

ME: Does anyone in your family have it?  Did your mom know that you had a disability before you were born?

NICHOLA:  Mum never knew I had physical issues, but she did notice that I was much less active in utero, and she just had a ‘feeling’ something wasn’t right. I was born by emergency c-section 8 weeks premature, and fought for my life. We obviously know how that one turned out. I still have my very first casts, they are tiny!!! The doctors and my earliest orthopedic surgeon told mum and dad not to have any more kids, as I am the eldest, but I have one younger brother and two younger sisters who are all fine.

ME: What is one thing you have always been envious to do?  

NICHOLA: One thing I have always been envious of is being able to do my hair. Hands down this is the biggest thing I think. I’ve always had boring ponytails, and they are very difficult to do at the best of times. I would LOVE to be able to put my hair up wherever and whenever I wanted without lying backwards!! I’m always captivated by others when they do this.

ME: What is one of your fears? 

NICHOLA: One of my fears is if we were ever in a war and I wouldn’t be able to run away, or I’d be a burden to others. This terrifies me.

ME: Do you want to marry a person with or without a disability?

NICHOLA: My ex-husband was ‘normal’. He was awesome, helped me out heaps and was very patient. He got very good at doing my hair. Over the years I learned to let him help me more. Admitting we need help is very difficult. We are now divorced and I live with my border, Chloe, my dog and 3 cats.

ME: Do people often ask about your disability - how do you explain it?

NICHOLA: 99% of people presume I have rheumatoid arthritis, and they ask me about it. I rarely correct people now. People can tell there is something wrong with my feet/legs (I don’t always use crutches), and I answer questions. The most common one is if it is painful. I tell people that my feet do get sore. I don’t like talking about it too much as it draws attention to me. I just get on with it despite the issues.

ME: Are the any special items that you use?

NICHOLA:  I have a Tom, a Dick, and a Harry. They are my shower and toilet chair and my rails outside. My crutches are called Betty and Bertha. I hated having to use all these things, so I figured if I gave them a personality it might make me feel better about it.

ME: If you could be granted one wish and could be "normal" would you do it?

NICHOLA: Granted one wish??? Be pain free. Hands down. The pain I get is awful, it radiates, the nerves then get confused and cause headaches, pelvic pain and back pain. I take heavy duty pain relief just to walk to the toilet in the morning. I am under a pain specialist. My feet swell enormously, go bright purple, and water, air, socks, bed sheets, etc hurt more than anything.

One frustration, is even medical professionals get it wrong, when it is written all over my medical notes.  If they are not sure, all they have to do is ask!

AMC Awareness

For my first 7 years of life, I grew up with another AMCer in my town.  After my family moved away, she remained the only person I ever knew that shared my disability.  I went to a “normal” school with “normal” friends and for the most part thought of myself as one of them.

After starting my blog last July and connecting with AMCers across the world through social media, I learned so much more about myself and arthrogryposis.

For the past few years they have held an annual AMC convention. I really wanted to attend this year but a long car ride with a toddler is miserable and leaving my husband home alone to juggle work, our son and day-to-day chores just didn’t feel fair.    

In spirit of AMC awareness day coming soon on June 30th {wear blue and show your support, yo!} and the upcoming conference, I wanted to pass on some interesting facts on AMC (thanks again Tracey Schalk for sharing them) and a slide show capturing a few great faces of AMC (thank you Margaret Chaidez, they are priceless). 

Did you know...?

1. Arthrogryposis is defined as multiple congenital (from birth) joint contracture or multiple joints that are stuck in 1 position and have very little flexibility. A newborn has to have 3 contracted joints in two different body areas to have a diagnosis of Arthrogryposis.

2. Arthrogryposis in an umbrella diagnosis which means that it is part of other many conditions and syndromes. These conditions and syndromes are usually referred to as the type of arthrogryposis. Currently there are 400 identified types of AMC. Amyoplasia, Distal and Escobar Syndrome are the more common types (but they're still rare within the general population). Some individuals never have their type of AMC identified.

3. All types of Arthrogryposis occur 1 in 3,000 live births. Each type is than more rare from there. My type of arthrogryposis, amyoplasia, occurs approximately 1 in 10,000 births. Sadly, about 20-30% of infants born with AMC won't make it to their 1st birthday because they have severe central nervous system dysfunction or have a genetic type that is lethal and some babys don't make it for unknown reasons. http://www.amcsupport.org/inmemoriam.html

4. Arthrogryposis is caused by an unborn baby not moving properly during fetal development. A baby has to move its limbs for proper joint development to happen. When a joint doesn't move for a long period of time, it gets stuck and contracted. Why a baby fails to move its joints depends on the type of AMC. For example, In Amyoplasia (a non-genetic type), its because the muscles fail to develop. In Escobar Syndrome (a genetic type) the messages that impact a person's muscle movement is affected, the message isn't able to get through very well making it more difficult for them to move.

5. Common joints contractures in arthrogryposis include: Clubbed feet or vertical talus, extended (straight) or flexed knees, dislocated and/or externally rotated hips, internally rotated shoulders, extended or flexed elbows, flexed wrists, adducted thumbs (stuck-in-palm), fingers fisted or extended.

6. Arthrogryposis is not curable but it is very treatable! Usually the goal of treatment is to make a person as independent as possible in activities of daily living (ADL's). ADLs are those things you do every day to take care of yourself (eating, dressing etc).

7. Treatment for arthrogryposis usually involves: stretching (to increase joint range of motion), physical therapy to work on overall strength and gross motor skills (walking, standing), occupational therapy to work on fine motor skills and self-help skills (grasping, feeding), speech therapy to work on speech and oral motor skills, serial casting (including the Ponseti Method for clubfeet), splinting, bracing (AFO's, KAFO's) and orthopedic surgery (osteotomies (bone cuts) to change angle or rotation of a bone, soft tissue releases (releasing and lengthening tight muscles and tendons), muscle/tendon transfers (changes what body part a muscle/ tendon moves) and external fixators (metal frames that are applied over a deformity that is exceptionally rigid/tight and needs to be corrected slowly or to length short bones). And there are other therapies as well: hippo therapy (using horses for therapy), aqua therapy (therapy in a warm water pool) and massage therapy to name a few.

8. Arthrogryposis is considered an orphan condition by the National Organization for Rare Disorders, Inc. (NORD) because it affects less than 200,000 people in the United States. Statistically speaking, The US has 313 million people so about 104,000 people would have arthrogryposis but this doesn't account for the babies who don't survive infancy. Rare disorders and conditions are significantly less like to be researched.

9. 1/3rd of all cases of arthrogryposis are amyoplasia type. Amyoplasia means a lack of muscle development, this means muscles can be completely absent (they just failed to developed during fetal development) and the ones that did develop can be weak or are not of normal size. Amyoplasia is not considered genetic because it doesn't repeat in families however there is still no known definitive cause to explain why amyoplasia occurs.

10. Arthrogryposis can affect just the arms/hands (sometimes referred to as upper extremity only) or just the legs/feet (sometimes referred to as lower extremity only) or it affects all the limbs (sometimes referred to as all extremity). Having all 4 limbs affected is the most common.

11. Many people with arthrogryposis have other co-existing conditions. These other co-existing conditions may be part of their type of AMC. Some of these other co-existing conditions include: cleft lip and/or palate, an airway that is narrow, weak suck/swallow, gastroschisis (intestines on the outside), tethered spinal cord, facial birthmarks (also called stork bites, angel kiss), micrognathia (small or recessed jaw), vision and hearing impairments, plagiocephaly (abnormal head shape) and severe scoliosis (curvature of the spine) can cause lung problems. These other conditions can lead to needing trachs (a tube in the airway that helps with breathing), g-tubes (a feeding tube), hearing aides and cranial remolding orthosis (helmet)

12. Babies born with arthrogryposis can have a very rough start in life. Many babies with AMC accidentally have their bones broken during delivery or during the neonatal period. The lack of movement can make their bones more brittle (this is not the same as brittle bone disease) and if the position of the contractures are not favorable for delivery (for example if a baby's hips are externally rotated and knees stuck in flexion) a lot of force may be needed to deliver them, resulting in fractured bones. The thigh bones (femurs) and the upper arm bones (humerus) are common bones to be broken. Some babies have their limbs fractured immediately after birth because their medical team doesn't know how to move them yet. If AMC is detected before birth a c-section may be needed to try to avoid broken bones but even with a c-section it can still happen. Some kids continue to have fractures throughout childhood from accidental falls.

13. If a baby is diagnosed with arthrogryposis before birth it's now recommended that the mother take steps to get the baby moving, because the more movement there is, the less rigid the contractures will be. At the 2009 AMC Conference, Dr. Hall (the top geneticist in the study of arthrogryposis) said that mothers should drink caffeine, exercise and take deep breaths often. All of those things will keep the baby moving as much as possible. She also recommended delivering at around 37 weeks if the baby's lungs are mature so that physical therapy can be started sooner.

14. With treatment many people with arthrogryposis will walk, while some will need a wheelchair. Regardless of whether they walk or use wheels, its all about effective mobility. Those who walk may need braces (AFO's, KAFO's or HKAFO's) or walking aides (walkers or crutches). There are two types of wheelchairs people with AMC may use depending on how their affected, manual chairs (which are propelled with the arms) or power chairs (which are propelled by a motor).

15. There is no cure and even fabulous treatment can't regain normal range of motion and strength in every joint BUT Its AMAZING what people with Arthrogryposis figure out how to do despite "crooked" limbs! We kind of make range of motion and normal muscle mass look over rated. Think about this....could you make a fruit salad *without* using your hands!? http://www.youtube.com/watch?v=lhrXCt_WoLU

16. Arthrogryposis can cause height and weight deficits in childhood and subsequently in adulthood. Children with AMC tend to be on the low end of the growth charts for weight (or not on the chart at all). As adults they tend to be 4-8 inches shorter than familial height and weigh 10-20 lbs less than their peers. Obesity should be avoided because it makes it harder to move limbs that are already weaker (taken from page 24 of the AMC Text Atlas)

17. Lack of movement during fetal life causes the joint contractures in arthrogryposis but another sign that there was lack of movement is lack of creases over the joints. Look at the skin over your joints when they're straight, there are creases visible, a lot of babies with AMC lack these in the joints their affected in.

18. Adults with arthrogryposis are prone to developing osteoarthritis, some earlier in life than their typical peers. Its not known exactly why arthritis develops in adults with AMC, its either because of abnormal joint surfaces (due to the contractures) or its because of the vigorous PT early in life thats necessary to increase joint mobility. Some adults will need joint replacements to relieve the pain of the arthritis.

19. Arthrogryposis is not considered progressive, it's as severe as it's going to get at birth, the contractures won't worsen with time. It is however regressive in nature. This means that even after any type of treatment (even highly effective treatment whether it be surgical or non-surgical) the contractures/ deformity can re-occur. So a foot can go back into a clubbed position, a knee can get stuck in a flexed position again, a wrist can stop going to neutral again ect, this is also called relapse. Post-treatment bracing (like after casting or surgery) is very important to try to prevent relapse but even strict brace wear doesn't stop all relapses. Once a person stops growing the contractures are less likely to re-occur.

20. Amyoplasia, one of the most common types of Arthrogryposis, can occur in identical twins but only 1 baby is affected and one is typical. This is one of the reasons that amyoplasia is not considered genetic. AMC can happen in just 1 twin of a fraternal set and AMC can happen in both twins if the AMC is genetic in nature. 

 

 

945 days

Since my son was born we have been at the mercy of others.

Losing my independence was one of the hardest parts of becoming a mom. It's enough to make me in no rush to have more kids. I know everyone loses freedom when our children are born but for me it was different.

I couldn't go to a single place alone with him. No quick runs to Target to get out of the house. Not even a simple walk around the block on a sunny day. If he had a doctor appointment both me and my husband had to take off work.

When we were alone, we stayed in the house where I could keep him safe.

As an infant, I couldn't carry him or the heavy carseat. As he grew older I couldn't carry him and struggled with the buttons to open the straps on his booster carseat.

He is now more self sufficient but I still worry about him in parking lots and crowds. He's only 2 1/2 and his ability to follow instructions waivers.

Lately he has started climbing in his seat by himself. I have also become an expert at getting him to cooperate with me - making simple tasks seem fun.

I thought this Father's Day would be a good time to try out our first taste of independence.

Following our family traditions, my husband left at the crack of dawn to golf with his dad. Me and Oliver stayed home and ate breakfast, watched cartoons and got ready to go visit my dad for awhile.

The moment had arrived.

Our things were packed, the car was loaded and I yelled to Oliver, let's go visit grandma and grandpa.

He let out a whoop and raced to the door. I held it open and he followed me to the car. I opened the car door and he climbed in. I buckled him up and grinned.

The past two years we all started our Father's Day hours before things started and left the house insanely early when my husband left for golfing - I had no choice because I needed help getting him in the car.

It felt so good. We could follow our own schedule for the first time.

As we backed out of the driveway I smiled at Oliver and said, we did it buddy, just you and me. I let out a celebratory YIPPEEEE and he echoed back at me.

After 945 days of always needing others, this was a moment I'll never forget.

nobody puts baby in the corner

Having a disability sometimes forces you to the sidelines.  It stinks. Especially if you are like me and want to be part of the action.  

4 Things I Would Love to Do
(Yeah, yeah...these are the things that crossed my mind at this very second, I’m sure I could actually think of 4,000)

Standing on Risers
I was in choir in High School and my first year of college. When we had concerts our group stood on U-shaped risers. As you can imagine, standing on risers with crutches is tricky. I was always stuck on the floor.  Luckily, I'm short so my placement made sense - I was not a giant on the floor surrounded by 5'2 pixies. Regardless, having the chance to stand on a different row always looked fun. 

Climbing Bleachers
Bleachers stink. Throughout Middle School and High School, I hated sporting events because I couldn't climb the bleachers. I felt bad making my friends sit on the bottom row. Also, if the bottom row was full, there were not a lot of options for me. Watching people step from row-to-row and work their way up is facinating to me.  Kinda weird, I know. 

Squatting
I think it would be so amazing to squat down and stand back up. You could pick stuff up or reach things on the ground with such ease. I can squat when I’m not using my crutches but then I need to hold on to something to help me back up…kinda like I’m an old geezer {wink}. I love it when people squat. It just looks fun and is a total gift. I dare you to squat today and know you are AWESOME.

Jungle Gyms
Playgrounds are always unpredictable. Walking in sand and wood chips on crutches isn't fun. Sloped rubber mats with sand is slick and requires focus while able-bodied kids whiz by.  Beyond the slippery aspect, anything sloped and combined with crutches is an armpit assault. 

I’d like to run, jump, climb and be able to keep up with my son. I really want to do the monkey bars and hang upside by my legs!

Parents with disabilities must find themselves standing below while the kids run around. My son will smile down at me and yell for me to come up. I often leave my crutches down below and make my way to the top. However, the moment I get up it seems my son has jumped back down. So it's an exhausting game and to top it off, I’m always afraid other kids might move my crutches on me. It’s a little risky.

Ed Haydin, Architect & Hart Park VisionaryWhen my neighbor and local architect mentioned that he was working on a new park for the city that he thought I would love, I was super excited. 

Hart Park recently opened and I was blown away.  It still  offers the opportunity for wild children to climb and make their way up the jungle gym but there is also a ramp that weaves its way to the top. The way it is added flows with the structure perfectly. It doesn’t look like an adaptive addition.

The playground features a devoted sandbox area off to the side and the rest of the terrain is a soft and rubbery textured mat. It's flat and super nice to walk on. There are no steps, ledges or barriers that could keep a disabled child or disabled parent away from the action.

Damian Buchman, TAC FounderEven if I can’t do everything, I like to be in the middle of things and soaking up the experience. This new park makes it possible.

My friend Damian Buchman (bone cancer survivor and founder of The Ability Center) recently shared the quote below about our new park on his site.  I have to admit it feels good to know there are other adults who think like me and appreciate little gifts such as this park around the city. I’m not alone.

Though I am not permanently in a wheelchair, I do use one so I can go on walks with my wife and son. As I get older my limb salvages are getting weaker and more painful -- this is one of the possible effects I knew I would face later in life, one of the many reasons why I'm so dedicated to access and universal design. And, as a new father with a disABILITY, I have seen a new light. While it is absolutely fantastic that this playground is accessible for kids with disABILITIES, as a father who loves to "play," it is equally important for parents with disABILITIES.

13

My room was pink.  I loved my cat Whiskers more than anything. She knew me – when I was happy, sad, when my friends were mad at me. I told her my secrets before I went to bed.  She purred and snuggled close. I had her from age 3 to 18 and I like to think she stuck around just long enough to see me off to college. 

I had a New Kids on the Block pillowcase. I was in love with Jonathan Brandis (RIP adorable boy). I’d wake in the morning, scoot down the big staircase to eat breakfast. My mom often helped me with my socks. I’d eat breakfast and she’d give me a ponytail.

We’d finish and my brother and I would head down the winding driveway to wait for the bus. I’d head out a little before him since his strong legs were faster.

The bus would come to screeching stop and the doors opened. My brother held my crutches as I climbed up and I held on to the seat tops as I walked to my seat. He handed me my crutches and made his way to the back, where the older kids sat.  I always felt bad that he had to help me. I assumed he secretly hated it but our parents made him do it or guilt because his body was perfect. Heck, maybe both.

I was 13. It is a terrible age but even worse when you have a disability.  Hmmm…where to begin…. 

School Dances
I can't dance and hated watching my friends do the things I couldn't.  They’d kick off their shoes and dance around in cute dresses. Sitting off to side seemed lame but standing in the center of dancing girls was not any better.  Those were the days I was crushingly aware that I was “different” - it sucked and life was not fair.

Cute Boys
I liked them but none liked me. That is not the age for taking risks. I’m sure even if one did like me he would have never told me – what if others teased him? I was afraid I would never have a boyfriend. Looking back now, 13 is young and who needs boys anyways! {wink} But at that age I felt old. I was missing out on the things other girls were experiencing.  I wanted a note slipped in my locker too. 

What Will I Be
I couldn't do a job that required lots of standing or a steady strong hand.  That ruled out being a doctor (oh yeah and the fact I took my math/statistics classes over a few times in college). I thought being a teacher sounded fun but I was scared of kids picking on me. Even worse the parents not thinking I would be good enough. I can remember thoughts of how kids might pick on they way I write when using the chalkboard or how every year I would have to explain my disability to a fresh set of kids and teachers. There was no way I was going to subject myself to a lifetime of that.  

School Lunches and Mean Girls 
The hot lunch lines at school and using crutches are not friends. I hated asking people to carry my tray. To top it off, in Junior High and High School it seems like us girls were always in "fights" so there were days when my friends were mad at me and I might not have help. It was easier to bring stuff from home. 

Envy
Dreams of wanting to run, jump, twirl, climb and feel really strong. I would see girls in track. Cheerleaders at football games. My brother climbing a tree. Little girls twirling in a cute dress. I wanted to know what strong legs feel like. That dream hasn't changed. 

With all that said, I’ve learned something over the last 30-something years. It’s not all bad.  Maybe we are the lucky ones? 

I like to think being born with a disability makes us amazing.

In the end it sets us apart and even though if you are anything like me - you would kill to just blend in – it’s a good thing. Our perspective is beyond the average girl, we can give an hour long presentation on using crutches in all terrains, eating with our feet, opening doors in a wheelchair, using a stick to type, we know pain and we are quick to notice when people hold their bodies funny and are secretly in pain/uncomfortable, we know how to guide conversations and turn awkward back to okay and we know how to ask for help.  

Our compassion is huge and our determination is out of this world. Some will call it stubborn. We will see it as survival.  We will be more than a pretty face and some day boys will want to know us. Our personalities and substance will matter. Employers will be proud to have us because we aren’t lazy and we care.  Mean girls grow up too. They will end up being some of our best friends. Our kids will have mommies with magical walking sticks or hot wheels. They will grow up seeing determination and zest and I pray that they soak it in too.

So for those of you out there who wonder, wish and worry about what’s to come – that is what I’ve discovered in my short time here in this world. And I like to think the best is yet to come.

chick fight!

Today was one of those days. When you just want to go back to bed. But you can't - you have to suck it up and go about your day.

My headband totally gave me a headache. It seemed cute at home and really lame in the bathroom at work. Not worthy of a headache so I took that baby off and dealt with weird smooshed hair.

The stitching on the elastic band of my cute flats broke. So before I left work I did what any normal person would do, I grabbed the stapler off my desk and did my own quick "fix" to get me home.  Sigh.

I got to daycare and planned to take the handicapped spot in hopes of avoiding extra steps and having staples stab my foot. Tuesday is just too early in the week to deal with blood.

Parked in the handicapped spot was a seemingly healthy, young woman sporting leggings, tall boots and taking her sweet time buckling in her child. It was obvious that she was parked there out of sheer laziness. I instantly hated her.

Maybe it was my headache. Or the fact I had to go to the bathroom insanely bad. Perhaps my despair over my shoe. Fear of the staples puncturing my flesh.

I like to think it was a combo of it all. I wanted to turn into Hulk or a WWE wrestler. I had crazy urges of running up to her and knocking her down, pulling her hair and calling her lazy. I'd dent in her car door with my super hero strength and run away and hide in my car.

Rest easy, none of this happened. I parked on the street and walked.

I must confess I took a picture of her car. Made me feel better, like I was going to send it to the police department and they'd stop over at her house and school her on how to be a good person...

Looking forward to a fresh start tomorrow. As for tonight, I'm sending myself to bed.

ummm...I want more

My hair gadget from Australia arrived. It worked on the first try, not the prettiest pony on the block, but it served its purpose. I have been trying different ways of doing it to see what works best. Leaning back on couch. Laying on the floor. I have found that being slanted is key to help the hair fall in the right direction and have my hands angled correctly.

The drawback is the long string. What the heck should I do with it? I struggle to wrap it around my pony tight enough to look decent and don't have the strength to tuck the end so it stays.  Since I have only worn it around the house, I just let the long string hang like a tail. One time it got stuck in the couch cushion and yanked my hair when I stood up. Another time I got it caught in the bathroom door.   

After developing a slight fear of strangulation from this elastic bully, I started tucking it in my shirt.  This instantly decreased my odds of whiplash but I found that the pony slowly slides out from the string being tugged on by my shirt.  Lame.

I appreciate the independence of being able to pull my hair back on my own but I still want more. For now I am holding on to my hopes for a pony machine. Always dream big. 

Amazing AMCers: Meet Tracey Schalk

My fellow AMC buddy Tracey shares my ponytail woes. Well, she shared them. This is now another thing she mastered.

Limitations are often the catalyst to conversations where great ideas flow.  It inspires creativity.  It pushes you to try.  No one likes to be told no.

I love Tracey's video showing how she found a way to pull her hair back without help.  It's awesome! I want to master this too - I recently ordered the 1-Up Hair Tie from Australia, I'm hoping it works.  Stay tuned for updates!

ponytails

Ponytails. You see girls pulling their hair back as they walk down the sidewalk. In the locker room before gym class. Or even the dreamy DeAndre Brackensick from American Idol who whipped his curly locks into a perfect ponytail every week.

You may have never given it a thought. It takes seconds to do. Unless you have AMC.

We are all different but most of the AMC ladies I connected with have some variation of bent hands, elbows, limited shoulder range and weak hands/fingers. This puts a big fat damper on our ponytail dreams. 

So just like I covet those who can walk, pull a suitcase, talk on the phone and wear heels at the same time – I also want to be you, the girl who easily throws your hair back in a cute pony.

I dream of a machine. It would look kind of like those big hair dryers they once used.  But it would have a vacuum force that would suck back my hair in the perfect fashion (there would be settings…high pony, low pony, pony with volume on top, pony with volume and thin headband) and then robotic fingers would wrap the elastic band around the hair. It would be so awesome. 

I found things that work for around the house. Clips, headbands and combs are easier to do.  They give you a break from the hair but totally not something you’d sport in public. Last time I had my hair cut the stylist started to flat iron it and I was like, “ehh could I actually have a ponytail?” She looked at me like I was off my rocker. She had no idea that having a pony was a treat.

In our AMC Facebook group this pony discussion led to some awesome ideas. I’m hoping that more will come from my stylist friends and family.  We need your help!

Top 5 Tricks I Learned From Fellow AMCers:

  1. Lay on edge of bed or couch – gravity helps pull arms and hair back
  2. Take a long string and put around neck, lean back and pull the string up. Tie a knot, cut the extra string.
  3. Pull hair to the side and braid (I personally think this would be hard or maybe I just need longer hair)
  4. Hair sticks
  5. Ask for help

Most of us hate asking for help – even though the world doesn’t mind – we do. You also don’t want to be picky because you are just glad that they pulled it back.  So you might get stuck with a bumpy pony or one that is not high or low enough.

I joked in the string of comments that AMC girls need to marry stylists.  However, I didn’t marry a stylist but I am eternally thankful to have found a guy who can pull off the perfect ponytail in 30 seconds flat and is not too macho to do it. With every ponytail I love him a little bit more than the day before.

I’m still holding out for my machine though. I think it would make the world a better place.

  

PLEASE WATCH: Morning Blend 4/2

When I started my blog and began sharing my parenting journey as a blogger on MilwaukeeMoms.com I never imagined the people that would cross my path both face-to-face and via the cyber world. 

Telling personal struggles isn't easy. I'm the girl who hates to ask for help. Having a physical disability is probably good for me. It forces me need others. Keeps me humble.

I'm excited to be on the Morning Blend as part of a panel discussion on living with a disability this Monday morning (4/2). I'd love for you to tune in or set your DVR to check it out.

Segment summary:

Parenting is hard enough as it is, now take that and amplify it. Imagine being a disabled parent trying to raise your children, suddenly things are seem much more complicated. Join us as we talk to those who know firsthand how difficult, yet rewarding, being a disabled parent can be.

mommy guilt

I left WI on a dreary Saturday morning to stay a resort in FL for work this week. The weather is perfect, the sky is blue and there is not a single toy on the floor of my hotel. I haven't watched Batman, Dora, Diego or Blue's Clues in 48 hours.

The process leading up to my trip was enough to make me want to just stay home....stock the house with groceries, make sure everyone has clean clothes, line up babysitters and fun things for my son to do, get my bags packed...all of this in addition to normal house chores, every day work life, wanting to hang with my hubby and different volunteer obligations.

So once my plane screeched to a hault, I easily embraced my blissful diaper-bag-free life, that is until we FaceTimed tonight. His big blue eyes came on my phone screen and he said, "I wuv you mama" and to make matters worse this was followed by him running in circles, jumping and doing crazy cute dance moves.

Hellooooo mommy guilt.

You never want to miss a second. Kids change so much month-to-month that each second is so precious. Yet it's so good to be alone, breathe and be able to have a career you love too.  Finding the balance and letting your heart be okay with it is the tricky part. UGH

25 rules for moms with sons (tissues required)

My son is rapidly changing. Soaking up the world around him. Acting out what his friends from the Fresh Beat Band are doing on TV and warming my heart with Itsy Bitsy Spider remixes and Peanut Butter Jelly Time dance-offs. He has his “I’m two” moments and I wonder how we will survive the next few years but one good week makes me forget.

Right now he thinks we are awesome. He adores his dad with a love that I can’t even put into words. As I watch them play I find myself longing to freeze time. I love our nights snuggled on the couch. Knowing he has not experienced the frustration of being hurt or backstabbed by others. He is safe from the age of peer pressure and temptations. He doesn’t know of cliques, bullies and feeling uncool. All the stuff you so desperately want to protect them from forever. I know that’s impossible but I still hate to think of the day something happens that makes feels sad, rejected and/or heartbroken.  

I read the 25 rules for mothers with sons online awhile ago and loved it. I tried to tuck a few key points in my heart so I never forget. In case they haven’t yet crossed your path, I thought I’d share. 

25 Rules for Moms With Sons

1. Teach him the words for how he feels.
Your son will scream out of frustration and hide out of embarrassment.  He'll cry from fear and bite out of excitement.  Let his body move by the emotion, but also explain to him what the emotion is and the appropriate response to that emotion for future reference.  Point out other people who are feeling the same thing and compare how they are showing that emotion.  Talk him through your emotions so that someday when he is grown, he will know the difference between angry and embarrassed; between disappointment and grief.

2. Be a cheerleader for his life
There is no doubt that you are the loudest person in the stands at his t-ball games.  There is no doubt that he will tell you to "stop, mom" when you sing along to his garage band's lyrics.  There is no doubt that he will get red-faced when you show his prom date his pictures from boy scouts.  There is no doubt that he is not telling his prom date about your blog where you've been bragging about his life from his first time on the potty to the citizenship award he won in ninth grade.  He will tell you to stop.  He will say he's embarrassed.  But he will know that there is at least one person that is always rooting for him.

3. Teach him how to do laundry
..and load the dishwasher, and iron a shirt.  He may not always choose to do it.  He may not ever have to do it.  But someday his wife will thank you.

4. Read to him and read with him.
Emilie Buchwald said, "Children become readers on the laps of their parents."  Offer your son the opportunity to learn new things, believe in pretend places, and imagine bigger possibilities through books.  Let him see you reading...reading the paper, reading novels, reading magazine articles.  Help him understand that writing words down is a way to be present forever.  Writers are the transcribers of history and memories.  They keep a record of how we lived at that time; what we thought was interesting; how we spoke to each other; what was important.  And Readers help preserve and pass along those memories.

5. Encourage him to dance.
Dance, rhythm, and music are cultural universals.  No matter where you go, no matter who you meet - they have some form of the three.  It doesn't have to be good.  Just encourage your son that when he feels it, it's perfectly fine to go ahead and bust a move. 

6. Make sure he has examples of good men who are powerful because of their brains, their determination, and their integrity.
The examples of men with big muscles and a uniform (like Batman and LaMarr Woodley) will surround your son from birth.  But make sure he also knows about men who kick a$s because of their brains (Albert Einstein), and their pen (Mark Twain), and their words (Dr. Martin Luther King Jr.), and their determination (Team Hoyt), and their ideas (The Wright Brothers), and their integrity (Officer Frank Shankwitz), and fearlessness (Neil Armstrong), and their ability to keep their mouths closed when everyone else is screaming (Jackie Robinson).

7. Make sure he has examples of women who are beautiful because of their brains, their determination, and their integrity
The examples of traditionally beautiful women (like Daphne Blake, Princess Jasmine, and Britney Spears) will surround your son from birth.  But make sure he knows about women who are beautiful from the inside out because of their brains (Madame Marie Curie), and their pen (Harper Lee), and their words (Eleanor Roosevelt), and their determination (Anne Sullivan), and their ideas (Oprah Winfrey), and their integrity (Miep Gies), and fearlessness (Ameila Earhart), and their ability to open their mouths and take a stand when everyone else is silent (Aung San Suu Kyi).

8. Be an example of a beautiful woman with brains, determination, and integrity.
You already are all of those things.  If you ever fear that you are somehow incapable of doing anything - remember this:  If you have done any of the following:  a) grew life b) impossibly and inconceivably got it out of your body c) taken care of a newborn d) made a pain go away with a kiss e) taught someone to read f) taught a toddler to eat with a utensil g) cleaned up diarrhea without gagging h) loved a child enough to be willing to give your life for them (regardless if they are your own) or i) found a way to be strong when that child is suffering...you are a superhero.  do not doubt yourself for one second.  Seriously.

9. Teach him to have manners
because its nice.  and it will make the world a little better of a place.

10. Give him something to believe in
Because someday he will be afraid, or nervous, or heartbroken, or lost, or just need you, and you won't be able to be there.  Give him something to turn to when it feels like he is alone, so that he knows that he will never be alone; never, never, never.

11. Teach him that there are times when you need to be gentle
like with babies, and flowers, and animals, and other people's feelings.

12. Let him ruin his clothes
Resolve to be cool about dirty and ruined clothes.  You'll be fighting a losing battle if you get upset every time he ruins another piece of clothing. Don't waste your energy being angry about something inevitable.  Boys tend to learn by destroying, jumping, spilling, falling, and making impossible messes.  Dirty, ruined clothes are just par for the course.

13. Learn how to throw a football
or how to use a hockey stick, or read music, or draw panda bears (or in my case alpacas), or the names of different train engines, or learn to speak Elvish, or recognize the difference between Gryffindor and Slytherin, or the lyrics to his favorite song.  Be in his life, not as an observer but as an active participant.

14. Go outside with him
turn off the television, unplug the video games, put your cellphone on the charger, even put your camera away.  Just go outside and follow him around.  Watch his face, explore his world, and let him ask questions. It's like magic.

15. Let him lose
Losing sucks.  Everybody isn't always a winner.  Even if you want to say, "You're a winner because you tried," don't.  He doesn't feel like a winner, he feels sad and crappy and disappointed.  And that's a good thing, because sometimes life also sucks, no matter how hard (as moms) we try to make it not suck for our kids. This practice will do him good later when he loses again (and again, and again, and again, and again.....)  Instead make sure he understands that - sometimes you win - sometimes you lose.  But that doesn't mean you ever give up.

16. Give him opportunities to help others
There is a big difference in giving someone the opportunity to help and forcing someone to help.  Giving the opportunity lights a flame in the heart and once the help is done the flame shines brighter and asks for more opportunities.  Be an example of helping others in your own actions and the way your family helps each other and helps others together. 

17. Remind him that practice makes perfect.
This doesn't just apply to performance-based activities (like sports and music) but also applies to everything in life.  You become a better writer by writing.  You become a better listener by listening.  You become better speaker by speaking.  Show your son this when he is just young enough to understand (that means from birth, folks - they are making sense of the world as soon as they arrive), practice trick-or-treating at your own front door before the real thing.  Practice how you will walk through airport security before a trip.  Practice how you order your own food from the fast food cashier.  Practice, practice, practice.

18. Answer him when he asks, "Why?"
Answer him, or search for the answer together.  Show him the places to look for the answers (like his dad, or grandparents, or his aunts/uncles, or his books, or valid internet searches).  Pose the question to him so he can begin thinking about answers himself.  Someday, when he needs to ask questions he's too embarrassed to ask you - he'll know where to go to find the right answers.

19. Always carry band-aids and wipes on you.
especially the wipes.

20. Let his dad teach him how to do things
...without interrupting about how to do it the 'right way.'  If you let his dad show and teach and discover with your son while he is growing up, some day down the road (after a short period of your son believing his dad knows nothing), he will come to the realization that his dad knows everything.  You will always be his mother, but in his grown-up man heart and mind, his dad will know the answers.  And this will be how, when your son is too busy with life to call and chat with his mom,  you will stay connected to what is happening in his life.  Because he will call his dad for answers, and his dad will secretly come and ask you.

21. Give him something to release his energy
drums, a pen, a punching bag, wide open space, water, a dog.  Give him something to go crazy with - or he will use your stuff.  and then you'll be sorry.

22. Build him forts
Forts have the ability to make everyday normal stuff into magic.  Throw the couch cushions, a couple blankets, and some clothespins and you can transform your living room into the cave of wonders.  For the rest of his life, he'll be grateful to know that everyday normal stuff has the potential to be magical.

23. Take him to new places
Because it will make his brain and his heart open up wider, and the ideas and questions and memories will rush in.

24. Kiss him
Any mother of sons will tell you that little boys are so loving and sweet.  They can be harsh and wild and destructive during most of the day.  But there are these moments when they are so kind and sensitive and tender.  So much so that it can cause you to look around at the inward, reserved grown men in your life and think, 'what happens in between that made you lose that?'  Let's try to stop the cycle by kissing them when they're loving and kissing them even more when they're wild.  Kissing them when they're 2 months and kissing them when they're 16 years old.  You're the mom - you can go ahead and kiss him no matter how big he gets - and make sure he knows it.   p.s. (this one is just as important for dad's too). 

25. Be home base
You are home to him.  When he learns to walk, he will wobble a few feet away from you and then come back, then wobble away a little farther and then come back.  When he tries something new, he will look for your proud smile.  When he learns to read, he will repeat the same book to you twenty times in a row, because you're the only one who will listen that many times.  When he plays his sport, he will search for your face in the stands.  When he is sick, he will call you.  When he really messes up, he will call you.  When he is grown and strong and tough and big and he feels like crying, he will come to you; because a man can cry in front of his mother without feeling self-conscious.  Even when he grows up and has a new woman in his life and gets a new home, you are still his mother; home base, the ever constant, like the sun.  Know that in your heart and everything else will fall into place.

my life as a disabled parent

A few months back I had the opportunity to interview some fellow (disabled) parents and roll up their experiences along with my own for MetroParent Magazine

I loved talking to these people and their stories totally touched me. I must confessed that it took all that was in me to not cry at times while they were talking. It was amazing to hear them say exactly how I often feel.

It's hard to watch others do the things you want to do for your kids. You worry they are going to secretly wish their mom or dad was normal and be embarrassed. You feel guilty that your other half has to do more and might resent you or have regrets ever saying yes to the parenting adventure.

It was honor to meet these individuals, learn their story and write this piece. Please check it out.

MetroParent: My life as a disabled parent

people who suck

Wisconsin winters are usually not fun. Slippery sidewalks, wet floors, focusing to keep my feet and crutches on dry surfaces so I don’t crash.  I think I mentioned in a past post about how I tend to use my handicap sticker mainly when the weather is bad. It makes life a little easier.

Well, this winter season has been amazing. The weather has been unseasonably warm and we have had little snow. My front lawn is still remotely green! It has been fantastic, the best of both worlds. I like cold weather but I also cherish the ease of a non-slippery world.  With all that said, I have a major soapbox with lazy people.  I apologize in advance if I offend anyone that’s not my intent. This is just my personal beef and I know everyone has their reasons. Not my place to judge. But I’m human and I do. Guilty as charged.

I can’t even tell you how often I see people parked in handicapped spots who appear quite capable of the extra 50 steps to park in a normal spot. Every time I go to Walgreens by my house I can't help but notice a car parked in a handicapped spot with no sticker or a person sitting in a running car while their loved one shops. That’s real neat that they stayed in the car and kept it running, but regardless they are occupying a spot that could be used by a person who actually needs it.  It makes my blood boil.

My son’s daycare is located in a busy area with heavy traffic. However, the side street offers an entire block of angled parking. There are always a ton of open spots.  They also provide one handicapped spot that is located in the daycare driveway.  Next to this spot is empty driveway space that has NO PARKING signs because of the large trash dumpsters. 

It’s amazing how people who can afford to pay 12K+ a year for daycare also never learned how to read. Simply mind blowing.  Every day I observe educated and loving parents park in these restricted spots while they run in to get their children.  I’m horrified by their lack of compassion for others and how they are teaching their kids to bend the rules without even knowing it.  I can’t even tell you how many times I have climbed a snow drift or slowly made my way down an icy sidewalk because the spot was filled by a person with two strong legs. Yep, by a person who can run, jump, carry their baby on their hip and easily tackle the harsh elements. 

With all this said, I am thankful to be me.  I’m not lazy.  I’m the person who gives up my seat to an older person even if they might think I need it more. I respect others.  I hope my son grows with a heart of compassion from living with a mom that’s “different.”  I pray he holds doors, gives up a close parking spot to make life easier for another who really needs it and I also hope he has the courage to {kindly} call out those people who suck.  

falling apart

In my last post I mentioned my new ice tips for my crutches. They are cool and work well, however once you reach safe terrain you have to flip them up so you don’t trash the floor or slip on the metal spikes.  I didn’t think it would be a big deal but I have found that it attracts attention. Every person that crosses my path eyeballs the contraption hanging off my crutches.

I love gadgets so on one hand – it is a cool topic of conversation. However, I am also the girl trying to blend in and avoid being asked how I broke my leg all day long.  So my fancy tips backfired.

In addition to the ice tips, I ordered the Tornado Tips which are normal crutch tips but last longer, have better traction and gel to soften the blow of each step on my arms. They rock but have a fat tip which sets my crutches higher.  As you may remember, I fill my crutches with super glue to make them silent, so this also backfired.

My new shoes (that happen to be super flat) were screaming to be worn and combined with my new extra tall crutches was pure badness.

It seemed fine at first. Heck, my shoes were cute. That’s what’s important, right.  Well, then my shoulder started hurting.  Oh and my arm felt cold. It was like I pinched a nerve and messed up my muscles.  I ignored it for a few days and then I couldn’t take it anymore. I would sit at my desk trying to focus on work but all I could think about was my cold arm and knotted up shoulder.  It was freaking me out.

My workplace offers cool perks which I totally appreciate. We have an onsite massage therapist in our health services clinic.  Before I could waste another second I called them up and made an appointment.   As the massage therapist worked my shoulder, I could feel the tight ball of muscles moving back and forth, she made a comment that they were messed up.  Yep, I was well aware!  

The massage worked wonders and by the next day my shoulder was fine and my arm felt warm.  Apparently cool gadgets and cute shoes come with a price. I am pretty sure that means for now I need to go shopping for some shoes with bigger heels {wink}.  

 

things that rock

I have started this new year being a pretty terrible blogger.  Life here has been consumed with returning to work after taking a bunch of time off for the holidays, freelance work at night and writing a story for Metroparent magazine that highlighted some amazing parents with disabilities from my community. I totally loved every second of interviewing and writing that piece, I'll share more once it's published. 

My year has also started off with a few gadgets and some new shoes in the mix. I'm excited to share them, maybe these things could make your life a bit brighter too... 

HANDS-FREE DRYER

Okay, go ahead and giggle. I totally dig this thing and even more I love that my husband bought it for me for Christmas.  My right hand is not as strong as my left. So holding a hair dryer in one hand and a brush in the other is impossible.  Problem solved. Me likes.

SHOE BLISS

In past posts I have mentioned my angst with clubfoot and finding shoes that work. I love a ton of the flats that are in style but couldn't keep them on my feet. It inspired me to find a shoe tailor and add straps to make them work.  

I'm now a shoe monster, I just can't have enough. Here are a few of my new friends. Welcome home sweet shoes, welcome home. My closet is happy to meet you!

AND SHE'S DOWN...

I live in Wisconsin. Normally our winter is filled with snow, ice and slushy mess - this year has been a strange spring-like treat. We finally got our first snow this past week and I had the chance to test out my new Thomas Fetterman ice tips.

Despite the obvious reasons I should hate winter since I use crutches, I really don't. I love winter clothes and jackets a lot and so I like to think it makes it all worth it. 

My mother-in-law bought me these new crutch tip covers for Christmas. They are amazing and work really well. I hope to find myself sprawled one less time on the sidewalk this winter and they will be worth every penny.

These three things make me smile. What kind of things make your life twinkle? 

 

 

 

 

Helloooo 2012, nice to meet you

I love starting a new year. A fresh slate. Renewed zest to focus on the things you want to improve.  Declared goals to become a step closer to that person you want to be.  It makes me a little giddy.

Since I have a boy sleeping in his crib slurping his Nuk and clutching Batman - I know that sparkly tops from Express and fun parties are not part of this season of my life. It’s okay, one kiss from his sweet face and the feel of him on my lap couldn’t even compare. I’m content at home with my hubby, laptop, pizza and watching the Rockin’ in the New Year shows. Since I am 14 at heart and love Justin Bieber and Taylor Swift, NYE programming is right up my alley. Bring it on.

This past year was amazing. I dedicated it to taking care of myself. (See Morning Blend post).  As I took different steps and gambled with new ideas, life simply happened. I believe we are all here for a reason but we need to take some risks to end up where we are meant to be. Last year at this time I had never thought I’d share way too much of my life on the web, end up on TV telling my story, make new friends who share my challenges and wrap up some personal things that I hated – my teeth were shifting (so I got Invisaline braces) and I had crazy ear issues when I would fly (so I had a sinus surgery, tubes in ear and Adenoidectomy).  So again, it took effort and risk but the end result is goodness.

I’m still toying with my 2012 resolution.  I have 2 hours and 29 minutes to decide. No sweat.

May you have an incredible next year filled with new starts, happy memories and be drenched in love.  

What resolutions do you have brewing?

P.S Anyone else as excited as me for the return of the Bachelor?  Eeeeek I love that show. Go Ben!

 

magical blue sticker

I used to be pretty choosy about when I would use my Handicapped Sticker. I saved it for Brewers games and events that would require a ton of walking without it.

I like to think I’m too cool to use it. That’s for the people who need special help, so I save it for them. Yep, go ahead and roll your eyes at me.  

I have started using it more and more during the winter months, every step closer to the door cuts down on my chances of slipping on snow and ice and being more intimate with the pavement than I really desire.

My sticker expires February 2012.  

My husband likes to tease me every time the expiration dates come up.  We like to do a count on the number of days until I’m no longer disabled.  Two months left people, two months.

It really is silly. I have to go make a special doctor appointment and have them sign a form saying “yep, sure enough this girl still has Arthrogryposis”…it’s almost insulting.

Granted I see people all the time with them that make me wonder…I try not to judge but they don’t look all that disabled to me.  So I am grateful they do have some regulations behind this magical sticker.

Am I missing something to this whole process - is there a sticker that doesn’t expire? Have any good handicap parking stories to share? I have a few, one especially that makes me giggle but I’ll save that for another day.  I want to hear yours!