This Is How I Do It: Dana of Uncommon Sense

This is the third guest post in a series called "This Is How I Do It" that features great bloggers who have kids with special needs. They're sharing their special needs parenting tips and tricks, and their usual extreme honesty.

Name: Dana Nieder of Uncommon Sense

Her kid: Maya, 3.5 years old, who has Maya Syndrome (aka "undiagnosed genetic syndrome")

My three biggest secrets to sanity are…

1. Writing. I started blogging as a little hobby when I was pregnant, but as the years have passed it’s evolved into so much more . . . a scrapbook, a sounding board, a source of entertainment. I love sharing stories, pictures, tips, and anecdotes with readers---but I also write for me. When I’m anxious or upset, nervous or stressed, I ruminate. I stew. I stress. I can’t think clearly. And then I sit and start writing, and an amazing thing happens . . . the fog in my head stats to roll out, and I have clarity. I see choices and options, I formulate plans, I deal with my feelings. Usually I can even put a positive spin on things by the time I get to the last few sentences. My therapy is a blank Microsoft Word document.

2. TV. A well done drama (a la Parenthood), sitcoms (Modern Family), or reality shows---the trashier, the better (like Teen Mom. Yeah, I said it.). At the end of the day, I want the TV on . . . even if a COPS marathon is the only thing on. When I’m reading, I’m thinking. When I’m listening to music, I’m thinking. But when the TV is on, I can zone out.

3. Constant, excellent beverage selection. Coffee, yes. Wine, yes. Seltzer with lemon, yes. Mint tea, cold beer, hot chocolate, water with cucumber slices, cocktails. I’ve always got a drink on my desk, in my travel cup, or in my hand. Something about a nice, hot (or nice, cold) drink makes me feel indulgent. Sometimes the littlest thing makes a big difference.

*Oh yeah, I’m also fortunate enough to have an amazing husband and supportive family. That helps, too J

I keep track of my child’s therapy and medical appointments by…

A good old fashioned (gigantic) paper calendar and a spiral bound paper datebook in our diaper bag. My tech-savvy sister-in-law mocked my paper-based system (“Seriously? They still make paper datebooks?”) until I pulled it out of my bag and opened it up. During the pre-preschool days of home-based therapies, we had a minimum of 15 appointments per week. No electronic calendar could let me see my entire week (and month) at a time the way that a paper datebook could.

Now that Maya’s in preschool and we have fewer appointments, the datebook is more or less falling to the wayside. We still use the big calendar that hangs on the kitchen wall, and everything gets entered into Google Calendars as well. Dave & I can access the Google calendar from our computers or cell phones, and it syncs automatically when we add or change appointments. (And it’s free!)

Important note: No calendar system, whether digital or paper, works unless you actually remember to enter the appointments in (or write them down). If, perhaps, you’re in a rush to leave the doctor’s office and decide to scribble the follow-up appointment date on a receipt in your diaper bag and think that you’ll “totally remember to write that down when I get home”, then you may end up missing said follow-up appointment. Not that I would know anything about that.

When I get bummed out about something related to my child, one thing that gives me a lift is…

Usually, the answer is writing. But if the stress/anxiety/worry is swirling around and I don’t have the presence of mind to write, then crying works. I can only hold off for so long before it’s time to let it out (in the beginning I could only last a day or so between crying bouts . . . now the space between is 1-2 months. Progress!). So I think of the worst possible scenario (we don’t get into the preschool I’m hoping for, the insurance won’t ever pay the claims I’ve submitted, I won’t be able to get us an appointment with the new doctor for another 4 months, Maya won’t ever relate to other kids her age, no one can understand her except for me and it’s just not fair) and I cry. Angry, frustrated tears give way to sad tears give way to tired tears and then they’re over. Crying-it-out is ideally followed by a nap (or good night’s sleep) and then something fun with Maya (with an appropriate indulgent drink in hand).

If it weren’t for [fill in the blank], I am not sure I would be able to get through the day

The internet. I spent the last two years at home with a nonverbal toddler. Much of that time was therapy filled—Maya would be working with a therapist, and I would just be stuck in the apartment (there were times that I participated, for sure, but other times Maya would just get distracted by my presence). If not for new websites, message boards, Facebook, instant messenger, and email, I would have felt completely disconnected.

Now Maya’s at school and I’m working again—but from home, so that I can put her on the bus in the morning and be here when she gets home. So the internet continues to keep me socially connected, and now allows me to work from home as well.

The way my husband and I split up responsibilities for caring for our child is…

Soon after Maya’s first birthday we realized that her “developmental delays” weren’t going to magically resolve, and decided that I should stop teaching and stay home with her full time, to help with her therapies, have time for appointments, etc. It was a difficult decision. Around that time, I took over the lion’s share of all-things-Maya. I handle scheduling appointments and therapies, corresponding with the school, managing prescriptions, and trying new therapeutic stuff.

That being said, I have the best husband in the world... Maya could not ask for a better dad. As soon as Dave is home, he’s involved. He helps with feeding her dinner each night and is in charge of the bath time & bed time routines. He also is quick to take over when he sees that I’m in need of a break. Weekends can get a little crazy, but if we’re both home we generally split childcare stuff 50/50. We’re fortunate to be great partners, and we’re not shy about saying “Hey, can you take over so that I can xyz”.

The way I deal if strangers stare at my kid or say things is…

Maya’s only 3, and we (lucky) haven’t had to deal with any rude stares or questions yet. Some kids have sized her up at the playground, and curiously looked to me to ask, “Can she talk?” and I say “Nope” and they just keep playing. Little kids are easy J

I worry about what we’ll encounter as she gets older. Just thinking about it gets my hackles up. Curiosity I can handle, but I worry about judgments and nasty tones and most of all, will Maya see it? Or maybe, when will Maya see it.

I like to think that I’ll take a moment to educate, to bridge gaps . . . to say “Her mouth doesn’t work the same as yours, so she uses this cool device to talk!” or “She can’t run that fast, but she still loves to chase her dog . . . do you have a dog?” or whatever.

But in my secret nightmare, someone says to me, right in front of Maya, “What’s wrong with her?” or something equally horrific. Really, how could I respond to that? (In a way that doesn’t involve disgust, obscenities, or projectiles, I mean.) I think that my response would likely be a wide-eyed, “I’m sorry . . . did you actually mean to say that out loud?”

One great site I’ve found lots of good ideas on is...

www.google.com

Wait! Before you roll your eyes, let me explain. With the diagnosis of Maya’s special needs, we were thrown into the world of “experts”. Suddenly I was analyzing the handiwork and goals of 8 therapists, and juggling appointments, tests, and potential diagnoses with no less than 15 doctors. I needed to speak their languages. I needed to understand oral motor activities well enough to push with questions about techniques for tongue lateralization, and to know why an adenoidectomy (surgery) may be able to alleviate some feeding difficulties.

I needed to be able to hold my own in an exam room with a rushed doctor, and the ability to slip into medical terminology often got me a different level of respect and more face time with the doctor.

When therapies were stalling and little progress was being made, I needed to feel like I could take some things into my own hands. Google & YouTube taught me enough therapeutic games, exercises, and hand positioning techniques that I felt empowered to help Maya myself.

I have the desire and the dedication to do whatever I can to help Maya learn and grow, but not the know-how or experience. Late nights (and long mornings) with Google have helped me to fill in a lot of gaps in my knowledge base.

I rock because…

I choose to. Plain and simple.

I don’t want to have a child with special needs. I don’t want my daughter to have to struggle and work hard to do things that come easily to other kids. I hate watching her struggle to express herself, while other kids can chatter away incessantly.

It’s not fair.

So from time to time I get frustrated and have a good cry, and the other 99% of the time we just live life. We play, we go to the zoo, we do art projects, we go to the dog park. We make up silly games and silly songs and try to enjoy life as it speeds by. We drink good coffee and cheap wine and laugh and I watch my crappy TV when Maya is asleep and I don’t dwell on the bad stuff. I try not to worry about things until I need to.

In the end, everyone has their own uncontrollable “it’s not fair” stuff... the unexpected death of a loved one, sudden unemployment, a cancer diagnosis, a spouse’s infidelity. Life can throw a game-changing, tragic occurrence to anyone at any time, and in an instant things can go from just-another-day to things-will-never-be-the-same. And every person who ends up on the receiving end of one of these curveballs has a choice: You can choose to mourn forever, to bemoan the unfairness and wish that you could go back to “before." Or you can choose to have a good cry and move on. To rock on. I choose to rock.