Wednesday, August 24, 2016

What Life in a Special Needs Family Looks Like

I've been giving you the hard sell on my book lately and I'm about to stop; but, before I do, I want to show you what a day in the life of special needs family looks like. 

It looks like a sister and brother racing up and down hills on a walk. 

It looks like people "helping" to make pot stickers for dinner. 




It looks like kids being kids and my husband and I being parents. 



My family doesn't have a "normal" day - but I don't know any family that does. For us "typical" includes special equipment (like my daughter's motorized wheelchair and dressing tree or my youngest's splint), frequent medical appointments, and always trying to adapt and improve how we do things. 

Some days being a parent is the hardest things I've ever done; some days it's the greatest gift I've ever been given. Usually that's the same day. 

One of my biggest concerns about becoming mom to children with "extras" was how it would affect our typically developing eldest child (who had a more correctable need).  Early on, he helped lay those fears to rest. During the adoption process for our daughter, we showed our son pictures and video of his limb different sister, trying to explain her differences the best we could. 

Some time later, our son told us that our daughter wouldn't be able to play golf. We naively assumed he was telling us this because of her limbs and assured him that she would be able to golf, just differently. He insisted repeatedly that she wouldn't be able to. Finally, we asked him why he felt that way. His answer was so beautifully three-year-old boy: "Because her a girl," he said matter-of-factly. 

Well, that girl has shown him what's she made of time and time again. And that little boy had shown us what a wonderful big brother he is. Last week was back-to-school week for us, and now that they are in first and second grade respectively, they are on the same playground this year.  They spent the first two days of recess playing with each other (football, by the way). My rough-and-tumble guy's guy chose to forgo playing sports with his sweaty, arm pit noise-making friends in lieu of playing with his little sister. And it's not like he was doing her any favors. They each felt lucky that their sibling had chosen them instead of their other friends. Just hand those kids their diplomas already. 

Life, of course, is not always like that. We like to joke that there's often a lot of crying at our house and that sometimes it's the kids. (Naturally, our youngest who is on the school's TK/K playground felt left out when he heard about his sister and brother's joint playtime.) 

There is no average day-in-the-life of a special needs family. Each need is unique; just as each family is unique. A child with developmental delays and a child with physical or medical differences each experiences life differently, as do their families. The things that become my normal will never become another family's normal, and vice versa. 

The first time Matt and I ever went to a special needs support group, everyone went around the room and listed their child(ren)'s needs. Each time a family explained their situation, I thought, "Oh my goodness, that sounds so hard." In talking to some other families later, it turns out they were thinking the exact same thing about us!

If you're a special needs parent who feels discouraged and overwhelmed, please know that I've been there and that this perspective has been years in the making. 

If you're a prospective adoptive parent who is considering special needs and are scared and afraid, please know that I've been there. 

To each of you, I would say this: Seek out other families who have been where you are and who are where you want to be. Listen to their stories. Any family that only tells you the hard is only telling you half the story. Any family that is only telling you the happy is only telling you half the story. There are no good days or bad days in parenting - there are only days, each one more fabulous and maddening than the last. 

Here are some families I've followed in stalker-like fashion over the years, all of whom happen to have children with special needs. 



Finally, do you remember my friend Cal/Mr. Scientist who spend the holidays with us through an orphan hosting program? He happens to have a special need and he's still waiting for a family.  I know his family is out there, even if they don't know it. Dear Family, We've been praying for you and for this very special little boy. We know he'll fill a void in your heart and lives that you didn't even know was there. 



Please contact me to learn more about this very dear ten-year-old boy. 

Monday, August 22, 2016

Tips For Waiting At the Doctor's Office With Kids

Every parent knows that waiting at the doctor's office with kids is right up there with having your teeth cleaned or a bikini wax - for the greater good, some things must be endured. 

Because all three of my kids have a little extra medically-speaking, I spend a fair amount of time at the doctor's office. Sometimes these visits are sweet moments. At other times, these visits send me to the brink. You can only blow up a rubber glove so many times before you're lightheaded and novelty-less.  

The big tease of doctors' offices is, of course, being moved from the waiting room to the exam room. You wait and wait, only to go 20 feet and wait so more. It's like when a delayed airplane pushes away from the gate, only to line up on the runway behind 17 others. Minus the peanuts and pretzels. 

Over the years, I've been in a lot of different doctor's offices. Many of our visits  have been in major cities, aka a haul from home. My husband has gone with me to some of our "big" appointments, but, more often than not, I go with a child (or children) alone. 

Because we go to the doctor so often, we have a bit of a system now to help combat the drive + wait time + the inevitable traffic on the way home. That system varies on any given day, but it frequently includes audio books or podcasts in the car and games at the doctor's office. I'm no stranger to forking over my phone or an i-Pad as needed, but it's not my first choice. (Because, hello, if I give them my phone, how am I going to look at Instagram?)

If you find yourself at the doctor's office (or even just in the car) all too often, might I suggest the following: 
Finally, here are some of our favorite doctor's office activities:  


You can find more tips like these (as well as strategies for organizing medical records, scheduling doctor's appointments and handling hospital visits) in my book, Beautiful Paradox: Musings, Marvelings and Strategies of a Special Needs Parent, available on Amazon.)

Friday, August 19, 2016

Preparing for Children's Surgeries and Hospital Stays


Everyone who is anyone in the writing profession suggests that you “write what you know.”

A few weeks ago, I found myself on a hospital chair converted to a bed. One of my children had just had surgery, and we were being kept in the hospital overnight so that they could monitor his breathing.  Our room for the night was euphemistically called an “open room,” which means it wasn’t a room at all. It was more like a glorified ER, with curtains on either side of us and in front of us. Privacy curtains don’t do a particularly good job at blocking noise, and they certainly weren’t this night.

At 3 AM, there were bed pan sounds to the right of us and vomit noises to the left. As I lay there, plenty tired but far from sleep, it hit me: This is what I know. 

Thankfully all of my kids are alright, but it has been a year of surgeries for us. This was our fourth surgery in 9 months and our third child to have surgery.  You know you’ve been to the children’s hospital a lot when a recovery room nurse says, “Hey! I know you” but then does a double take because the child in the bed is not the one she cared for before.

When we had our hospital cubicle sleepover, I was almost done writing my book Beautiful Paradox:Musings, Marvelings and Strategies of a Special Needs Parent but after that night I came home and added a hospital packing list to the book (complete with a recommendation to bring ear plugs). 

Some people are experts on how to make gourmet food or how to travel like a jet setter. I, it seems, am a de facto expert on all-things glamorous, like how to spend the small night in noisy spaces filled with bodily sounds.  Man, is it good to be me.

There really isn’t a place on the resume for “skilled minivan medical transporter” or “experienced bather of children in casts. Number of casts lost to water incidents on the job: 0” unless you work in the medical or healthcare profession (and I don’t). But these, nonetheless, are among the things I know.

If your job title includes “parent” or “parent to a child with medical or special needs,” then these are the things you need to know too.

Below are my recommended hospital packing lists, gleaned from first-hand experience. 

Hospitals aren’t fun places to be. But if you have to go, you may as well go like a Scout and Be Prepared. (Badge not included.)

If you're looking for more tried-and-true tips like these, they can be found in Beautiful Paradox: Musings, Marvelings and Strategies of a Special Needs Parent, available on Amazon. 





Wednesday, August 17, 2016

Customized Book Bags or If Ikea + Target Had a Baby

Even though Mother Nature is letting us know it's still officially summer with her toasty temps, we started back to school this week. I opted to pay the school to do all the school supply shopping this year, but there were a few things that I still needed to pick up. In particular, both boys' back packs were pretty much shredded after last year. So we needed new back packs.

When we were at Ikea couch shopping, I saw that they are now selling book bags. The bags, like most of Ikea's things are streamlined and super functional: think sturdy canvas construction with lots of pockets and clever little spaces. (Those zippered side pockets are for water bottles.)  The bags were also a really good price ($17 for the smaller one and $19 for the bigger one). So we got two of them. 

The only thing was that the bags were a little plain, even for my sensible taste, but especially for a five year old and seven year old. I shopped around Etsy a bit looking at customized name patches but then found the perfect solution in Target one day. Have you seen Target's new Cat & Jack clothing line? It's adorable and it just so happens that it includes little adhesive patches. 

If Target and Ikea ever had a baby, it would be these finished product book bags. 

Here's one of the bags before (complete with Run Club tokens). 

And here are both bags with the patches on them. Cute, right? I should point out that the patches have only been only a few days so we'll have to see how well they hold without any extra tacking. At least when it comes to book bags, we've started the new school year off right.

Happy new school year, whenever you return!



Monday, August 15, 2016

Stop Giving Meaningless Advice To Your Younger Self


At the end of last week, I was chatting with my daughter's swim instructor. He said it was his final few days of lifeguarding/swim lessons because he was headed to college as an incoming freshman. I thought about what it meant be 18 and to have four beautiful years of being an adult without being a grown-up stretched before you. I was tempted to offer parting words regarding that freedom. But then I remembered how annoying it was to be on the receiving end of forgettable advice from people long removed from college life and how the people who gave said advice always sounded old and washed up. I didn't want to sound old and washed up, so I held my tongue. 

I loaded the kids in the car and drove to the grocery store and then it hit me - the advice, while a universal truth, was more for me than for him. Just because something is universally true doesn't mean that it can be evenly applied. 

Because here's the thing, you go from being a young thing on a college campus to being a mom with a mini-van walking through the grocery store saying, "Don't touch" and you aren't even sure how it happened. 

I'm old enough to be past my 15-year college reunion but still don't feel old enough to be a mom. I've worked enough years that I've earned my chops, but I still don't feel "legit." I'm still waiting for someone to call me out on being an impostor of my own life. 

No matter how sage my words, my 18 or 20-year-old self  wouldn't have the perspective or life experience to appreciate their "wisdom" yet. Words are just words until you've had enough sun or clouds to feel their heat or stand in their shade.   

That college freshman who's never lived away from home needs to learn that what she does today impacts who and where she'll be tomorrow. Not because she's unfamiliar with the idea but because she needs to discover it, not conceptualize it. Her habits and defaults need to become ingrained and entrenched. She needs to refine her second nature, her truer, unedited self. 

Don't think that your 50 or 500 or, heaven help us, 2000 words will change who she is or who she'll become. Time and repetition do that - not a soap box. 

She's not ready for what you have to say yet. Not because she's wet behind the ears but because your words haven't had time to ripen. 

Advice to your younger self is, as the inartful like to call it, navel-gazing. Navel-gazing is for the self-absorbed; introspection is for those who desire growth from inward reflection. 

Don't tell your perky young self with the stars in her eyes what your cynical self now knows to be true. Let life wear her down and build her up; save the speech. 

Give that advice to the person you are now and to the one you want to be next Thursday - that's the person who needs it most. 


Tuesday, August 9, 2016

If You Want To Enjoy Your Home More, Act Like You're Moving


We moved a little over a year ago. I may have mentioned this a time or two before

They say that moving is one of the top five life stressors. It's right up there with death of a loved one, a major illness, and job loss. In many ways, I can affirm the accuracy of that statement. 

On the other hand, I can say that moving had many upsides. One of them being that we really enjoyed the last few months that we lived in the home we were moving from. That was in part because we knew that we were leaving that house and that area and so we took the time to notice and appreciate things that we had previously taken for granted. 

But there was another reason and that was because our house was in tip-top shape. Having the house on the market and "show ready" at a moment's notice was not the most fun I've ever had, especially given that my husband was traveling weekly. Getting three kids and myself out the door by 7 AM takes doing on any day. It took some extra doing and creativity to do so without strewn Legos or dishes in the sink. (Hint: Put the dishes in the oven if the dishwasher is clean and hasn't been emptied. Potential buyers rarely look in the oven!)

While leaving in the mornings was an exercise in frustration and speed cleaning, coming home each day was lovely. Things were spit-shined and de-cluttered. Mirrors gleamed and floors shone. It was like walking into a model house with a personalized feel. But even more enjoyable than the absence of stray coffee cups and toys underfoot was coming home to a house with a finished feel. There were no lingering house projects: all the light switches matched, paint had been touched up, and the back patio was power washed. In short, our house felt complete - even if it truly wasn't - because we'd finally gotten around to doing all the small projects that had hardly been worth putting on the To Do List. 

No matter how much time and attention we lavish on our homes, they are always evolving - in both function and feel. Things break or need replacing, styles change as do the seasons. You can go to the hardware store every weekend in a row and still forget that one $3 part that you've been meaning to buy for months. All of the inconsequentials eventually add up to something consequential. 

So, if you want to get the maximum enjoyment from your house, pretend like you're moving. That's not to say that things can't be done in stages or that you need to finalize every project all at once. Just walk through your house the way a buyer would. What is your eye drawn to? A mirror that still needs hanging? A rug that needs shampooing? Wall dings that need patching?  Take a weekend and knock out these nagging projects. Then walk thru the house a second time with a To Go bag and make the things that need to go, gone. 

This process will garner you all the benefits of moving, without the hassle or heartache. 

(On a funny, side-related note: On a day when the house had been shown several times, I came home to find that in my closet, where I had spent time straightening my hangers and front-facing my clothes, I had neglected to notice that one of my sons had left his handcuffs hooked onto a laundry basket. If anyone noticed it, I can only hope they thought it was a dramatic statement about laundry and not anything else.)

Monday, August 1, 2016

Scarcity, Slack and Tradeoffs or Why You Should Read This Book


I love to read fiction. My idea of a really good night is being curled up with a gripping novel and a beverage.

My husband and I went to the Super Bowl a few years ago. After spending the Saturday before the Big Game at various events, most of the group decided to head to a bar to watch the fights after dinner. I elected to stay in the hotel room with a book and a glass of wine. One of the women from the group commented, "Of course I'm going out. It's the Super Bowl. I'll only get to do this once." I was thinking the exact same thing about my book and quiet room!

But as much as I enjoy fiction, wherever I get to read it, I have a real soft spot for non-fiction. It makes me feel smart!

I recently read Scarcity: Why Having Too Little Means So Much.  It's a fascinating book about money, time and mindset. The concepts from the book are drawn from research in economics and behavioral science. Be still my geeky beating heart.

Scarcity, in whatever form, is managing with less than we need. Scarcity, the authors say, is why the poor stay poor and the busy stay busy. Whenever we have scarcity, we often "tunnel." Tunneling is when we can only see what's immediately in front of us, not future consequences. It's why, when we're running late, we make careless mistakes like pouring coffee while sending a text to save six seconds even though we know that the odds of us spilling the coffee are great, thus costing us more time to fix the mistake. 

The most insightful chapter was the one on "scarcity proofing" our lives via small but effective changes. Most of the suggestions made were obvious, but they were helpful, nonetheless. 

Set Defaults
If you tend to be neglectful of something, set a default so that you've automated that task. For example, if you're bad about paying bills, put them on auto pay. If you tend to snack unhealthfully, only stock the pantry with assorted wholesome goodness so that when you get busy and want to munch, the food on hand won't be eaten to your detriment. 

Convert Vigilant Behavior Into One-Time Actions 
Rather than trying to do the right thing multiple times, which can wear on your willpower, make decisions that eliminate decision making. For example, instead of trying to save money each month, increase your 401(k) or other savings contributions so that you don't have to think about the money - it just happens. 

Think About the Trade-Offs 
The most beneficial concept for me was the one of trade-offs. Instead of thinking, this only costs $29.99 and therefore I should buy it, consider asking, "If I spend $29.99 on this, what else will I not be able to buy?" Unless you're cash-strapped, these kinds of calculations would be overly taxing to make each time you made a small, everyday purchases. This kind of thinking, however, can also be applied to our time. 

With the start of the new school year rapidly approaching, it's helpful to think in terms of trade-off when we sign our kids and ourselves up for activities and volunteer assignments. (The topic of trade-off made me think about this post on Saying No to the PTA and Room Mom Guilt-free.) We can sign our kids up for any number of extra-curriculars activities, but we need to remember it takes away from time for homework and decompressing or just general margin in our days (the authors of Scarcity refer to margin as "slack"). 

May today greet you with abundance or, at least, a better way to tackle scarcity.