Paperwork: the bain of my existence

Last night, as I was trying to find an important document for some paperwork that I need to fill out for Ruby, I found myself knee deep in a slew of old bills, medical records, IEP reports, receipts, PCA timecards, paystubs, reports from Ruby’s ABT therapists, the deed to my house (WTH?!?!) and a bunch of other stuff I had allowed to pile up. Instead of filing away these papers in an orderly fashion, I bought a 3-tiered letter basket a year ago and used the following very unorganized system: bills I need to pay and paperwork I need to fill out ASAP on tier one, Ruby’s art projects and school stuff on tier 2 and everything else in tier 3. Also, I have multiple magazine files that I’ve used to hide away the overflow from tier 3 over the course of the past year. I have a huge file cabinet that is very organized, but I haven’t updated it since 2007! Needless to say, my files are a mess. Things need to be shredded and organized. Clearly, I’ve been dedicating too much time to clean floors and not enough time on clean files.

Last night as I was scrambling to find one elusive piece of paper amongst the many locations where I’ve stashed all of this crap paperwork, I ran into old coupons, postcards from local businesses, unopened mail and other extremely annoying things that I had saved for no reason whatsoever. Looking at the massive piles of paper makes me feel like an utter failure and saps my will to live. And it seems like I always need to locate these important pieces of paper at THE most inconvenient times under tight deadlines.

Over the next couple of weeks, I’m going to dedicate as much time as it takes to get our files in order so that I can regain some sense of control over the madness. My goal is to start a system that I can easily keep up regardless of how hectic our lives get.

Do you have a filing system that works great for you? A really simple way of keeping track of your child’s medical records? Please share your suggestions below!

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It’s the small things that matter

When you have a child with special needs, it’s the small things that matter. The slightest upturn of your child’s lips is the possibility of a smile; a single step could someday hold the promise of a hundred more. We rejoice when our children mumble a word that only our skilled ears can understand and we cheer when our children struggle through simple tasks that their peers complete with ease.

Quite simply, we’ve learned that life does not follow the prescribed series of steps in books like, “What to Expect the First Year.” And we’ve learned to celebrate each and every bit of progress our children make.

Have you ever heard moms of typical children complain, “Tommy started crawling. Now I have to babyproof the house!” or “Jenny is walking. I’ll never get another moment’s rest”? These statements rock me to my very core. As a mother whose child crawled at 2, walked at 3 and talked at 4 (with extensive therapy), it’s hard for me to understand how typical development can be a curse.

It would be easy to get defensive and high and mighty with these mothers, but I don’t. This is their reality. They’ll never understand the heart wrenching struggles that Ruby and I have been through and I can’t expect them to.

But, in those struggles, parents like us have been given an amazing gift: appreciation for the small things in life, grand celebrations over milestones other parents simply take for granted, a glimpse into the true miracle of life.

I wouldn’t want my life any other way – would you?

Beatitudes for Disabled People

I found this beautiful poem tonight and wanted to share it.

Blessed are you that never bids us “hurry up” and more blessed are you that do not snatch our tasks from our hands to do them for us, for often we need time rather than help.

Blessed are you who take time to listen to defective speech, for you help us to know that if we persevere, we can be understood.

Blessed are you who walk with us in public places and ignore the stares of strangers, for in your companionship we find havens of relaxation.

Blessed are you who stand beside us as we enter new ventures, for our failures will be outweighed by times we surprise ourselves and you.

Blessed are you who ask for our help,for our greatest need is to be needed.

Blessed are you when by all these things you assure us that the thing that makes us individuals is not our peculiar muscles, nor our wounded nervous system, but is the God-given self that no infirmity can confine.

Blessed are those who realize that I am human and don’t expect me to be saintly just because I am disabled.

Blessed are those who pick things up without being asked.

Blessed are those who understand that sometimes I am weak and not just lazy.

Blessed are those who forget my disability of the body and see the shape of my soul.

Blessed are those who see me as a whole person, unique and complete, and not as a “half” and one of God’s mistakes.

Blessed are those who love me just as I am without wondering what I might have been like.

Blessed are my friends on whom I depend, for they are the substance and joy of my life!

Beatitudes for Disabled People… by Marjorie Chappel from: Laughter Silence & Shouting : an anthology of women’s Prayer ed. Kathy Keay. Harper San Francisco, 1994

Stares cheerfully returned!

Staring. It’s something our mothers told us not to do, yet as parents of special needs children, we find people staring at our children everywhere we go. What is it about a person with disabilities that makes people throw their good manners out the door?

I was not at all prepared for the staring when Ruby was first born. Call me naive or just plain clueless, but I didn’t realize how differently people with disabilities were perceived in our society. Plus, I was used to being somewhat anonymous in this world. Suddenly when I’d go out into public, my child was being stared at and total strangers were asking me questions about her. In those early days, I’d find myself crying after an outing, bruised and battered by the questioning and the stares.

My perspective on staring changed after realizing that it’s not always out of rudeness. I learned this the hard way a couple of years ago. Ruby and I were at the Mall of America waiting for the elevator. A woman directly across from us was blatantly staring at Ruby in her stroller, watching her each and every move. I tried to catch the woman’s gaze to make her understand that her staring was not appreciated, however, she didn’t look up at me. I was angry and on the verge of tears. We shuffled into the elevator and the woman continued her rude stare. I was just about to say something to her as she got off the elevator, when she turned around, looked me in the eyes and said, “She is so beautiful.” I could feel my face turn red as I realized that this woman was simply captivated with Ruby’s beauty and couldn’t take her eyes off her. But in my battled state, I wasn’t able to see beyond what I perceived as rudeness.

Nowadays, I’m a lot more calm and resilient when it comes to staring. If I catch someone in the act, I’ll usually ask Ruby to say, “hi” to them. I want them to understand that she is a person, not an enigma to be pondered or discussed. If someone asks me questions about her medical conditions, I’ll usually tell them that I appreciate their curiosity but that I prefer to keep her medical history a private matter. For me, that is simply not grocery store conversation.

However, while I’ve built up a considerably thick coat of armor, there are days when the staring takes its toll on me. It’s usually because I’m tired, emotional, hungry or having a generally rough day. On those days, I think I should outfit Ruby in this fabulous shirt.

Check out these other posts on staring:
Didn’t your mama tell you that staring is rude?

Miss Manners: Stop Your Staring!

How do you react when people stare at your special needs child? Please share!

Do you know how to do the Heimlich manuever on your child?

Last night we had an extremely scary experience at our house. Ruby choked.

We ordered Chinese for dinner last night. Ruby loves veggies, so I threw a few peppers and carrots on her plate as well as some small bites of meat. Ruby is notorious for shoving food in her mouth and not chewing it as well as she should. This is something we’ve been working on for some time with an occupational therapist and have made really good progress with. However, last night I realized that we still have some work to do.

As I poured some hot and sour soup into my bowl, I heard Ruby gasp for air and start choking. I immediately jumped up and started patting her on the back, thinking she’d probably just cough up the bite of food on her own like in the past. But she continued to gasp for air and stopped coughing and I knew we were in trouble. I swept her mouth and felt nothing. PANIC.

I had taken a first aid/CPR course a couple of years ago and learned how to do the Heimlich on children, but it’s not something I have to do every day! First, I bent Ruby over and started doing back blows, but she continued to gasp for air. I was about to start doing the Heimlich when she started to gag and in an act of God, she vomited up a chunk of pepper.

I immediately started to cry and shake, thinking about the awful situation we had just been in.  I couldn’t even close my eyes last night without thinking about Ruby choking.

Last night, as I lay sleeplessly in bed recounting the event over and over, I realized that I need to take another child CPR/first aid course to refresh myself on how to react in an emergency. And I need to make an effort to review the materials on a regular basis and stay current so that I am more prepared when an emergency strikes. This morning I asked Ruby’s PCA to join me and we are attending a course in November.  And Ruby will be eating tiny, tiny bites of food for a while.

Do you know how to do the Heimlich or CPR on a child? If not, I encourage you to sign up for a class in your area at the Red Cross or your community center. At a price range of $25 to $100 (sometimes even free), it’s a small price to pay to for the knowledge that could save your child’s life.

Here’s a quick guide on performing the Heimlich on a child over the age of one.

Our PCA, our angel

Before I had to hire a PCA for Ruby, I never really understood how difficult it was to find just ONE smart, responsible and kind person with the skills to care for my special needs child.

I went about my search for a PCA much differently than I ever thought I would — I turned to Craigslist, where I posted a very detailed ad about the expectations and requirements of the job. At first, I had no idea if my tactics would actually work, but I thought it was worth a try. I received several resumes and conducted interviews with a few candidates. I weeded out those candidates who didn’t have a college degree, which at the time, seemed to me like a requirement for the position. After checking references and conducting background checks, I hired our first PCA, Julia, who had a social work degree and tons of experience caring for children and adults with disabilities.

At first, Julia was great. She was good with Ruby and seemed like a very sharp gal. She’d even text me on her way to my house in the morning to see if she could get me anything from Starbucks! But as she got more comfortable with me, she also started showing up late every morning, marking down mileage that I know she didn’t accrue and generally started taking an attitude with me. After a confrontation with her about incorrect mileage that I wasn’t going to pay, Julia texted me that she was quitting THAT DAY. I was in an absolute panic! I am a single mom and I work full-time, so I relied on her to support Ruby while I worked during the day.

Luckily, my mom was able to back me up and watch Ruby while I searched for another PCA. I went back to Craigslist and posted the same ad as before. Shortly after posting the ad, I received an email from a woman who was just writing to offer me advice. She encouraged me to think outside the box when selecting my PCA and shared how she didn’t have a college degree but that a kind family hired her as their son’s PCA, and she has been a part of their family for the last seven years. That email really got me thinking — did a college degree really matter if the person had experience, was kind and loved children? No, it didn’t.

That weekend, I interviewed April, a PCA with experience caring for adults with special needs, but no college degree. April shared with me that she was a single mom with a 7-year old daughter. Because she became pregnant at age 19 and was raising her daughter solo, she was never able to complete her college degree. She had such a calming presence about her and I immediately felt at ease with her sitting on the couch across from me. At that moment, I knew that I had found THE right PCA for us. April’s background check cleared and she was able to start watching Ruby the following week.

Two years later, April and her daughter have become such an important part of our lives. April always shows up on time in the morning so that I’m not late for work (she truly knows how important this is for me), she volunteers to watch Ruby on the weekends on occasion so that I can get a single mommy break, she joins me at medical appointments so that I have support and another set of ears, and above all — she is a real friend. I can’t imagine what our lives would be like had I not opened up my mind to hiring someone without a college degree.

April has been so inspired by Ruby, that today, she is pursuing her degree in early childhood special education and I’m happy to support her in every way as she works to achieve this amazing goal.

For those of you out there searching for a PCA — I wish you the best of luck and urge you to keep an open mind when considering candidates. You just never know who might end up being YOUR angel!

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