Saturday, December 31, 2011
Support the Special Olympics by using coupons, a shoe club and other Stuff Worth Knowing About
Friday, December 30, 2011
This Is How I Do It: Katrina of Fickle Feline
When I'm feeling overwhelmed, I do a mental check, asking myself if I'm hungry, angry, lonely or tired (HALT). If the answer is "yes" to any of them then I do my best to fix it, if not immediately, then as soon as possible. My husband and I also give each other time outs on the weekend so that we get breaks as needed. And, in a pinch, a glass of wine always works!
I keep track of my child’s therapy and medical appointments by…
I have a family calendar on the back of our front door. Before anyone leaves the house, they check the calendar to see what's on tap for the day. Max receives therapy seven days a week, so it is fairly static. The challenge is the rest of us!
One way I relax (actually really, really relax) is…
One of my best friends lives close by, and I like to go to her house for sleepovers. It's the only way that I can be truly off duty, and we get to chill out, catch up, and go out for breakfast the next morning.
When I get bummed out about something related to my child, one thing that gives me a lift is…
The truth about autism is that it is a constant two steps forward, one step back. It is important to keep perspective, which is why I chronicle Max's progress. On the hard days, I can look back and see how far he has come. I can also get helpful reminders, like the fact that his behaviour always goes sideways right before he gets sick. If it weren’t for my belief that everything will be okay, I am not sure I would be able to get through the day.
The way my husband and I split up responsibilities for caring for our child is...
I have changed my career, leaving my full-time position as a Marketing Manager so that I now work part-time from home and handle getting Max to and from school and therapy and all of the day to day consultations and meetings. My husband gets home quite late, and he puts Max to bed. On the weekends we split duties equally.
The way I deal if strangers stare at my kid or say things is…
I am always very kind and direct. I let them know that Max has autism, and that a year ago, he wasn't able to walk in a grocery store with me, or go to the bakery or the movies. I also give them a copy of my card and invite them to come read more about Max's progress and find out more about autism.
One great therapy technique I recently learned for my child from his therapist that I like doing with him is…
This isn't new, but it is an important thing to come back to. Max is a child who needs reinforcers. We are in the final steps of toilet training, and whenever progress stalls, we need to up the ante and find something more motivating to get him back on track. An example would be that when Max has a movement in the toilet, he used to get a marshmallow. We went through chocolate cookies, brownies, scones and more to keep him interested.
One great site I’ve found lots of good ideas on is...
The Happiness Project. I love this site because the challenge I face every day is not whether I am going to do what needs to be done, it's the manner in which I'm going to do it. I need reminders and aids on a daily basis to help keep my attitude positive and to give me perspective.
I rock because…
I'm Max's mom. He is the hardest working kid I've ever met and has taught me more in his five short years than I learned in the 31 years before I met him combined.
Thursday, December 29, 2011
This Is How I Do It: Sunday of Extreme Parenthood
Wednesday, December 28, 2011
This Is How I Do It: Dana of Uncommon Sense
My three biggest secrets to sanity are…
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...
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.
Tuesday, December 27, 2011
This Is How I Do It: Debbie of Finding Normal
Blogger: Debbie of Finding Normal
Her kids: Noah, 6, and Addison, 5, who has trisomy 9
My three biggest secrets to sanity are...
My amazing husband, friends, and chocolate. Being a parent is hard work. Being a parent of a child with additional needs is really really hard work. There is never a dull moment, and just when you get in a groove...something else will happen to throw it all off. A runny nose can quickly turn nasty. I have learned that I can't do it all, and having an awesome husband who truly carries his half of this load keeps me sane. I'm still not great about asking friends for help, but some just KNOW. And I love that I have a couple of really good friends who I can say anything to, and know there is no judgement. And chocolate? Need I say more?
I keep track of my child’s therapy and medical appointments by...
Keeping multiple calendars. I have one on the side of the fridge, a planner, and one on my phone. They are usually fairly synced and FULL! I would say the one we use the most is on the side of the fridge, and I love that we all access it so often!
One way I relax (actually really, really relax) is...
Reading. I have always been a reader, and I love escaping in a good book. I spend hours picking out ebooks from the library's website, loading up my wish list, tracking them all on goodreads, and talking to friends about books. I try to read every day, even if it's just for a few minutes before bed.
When I get bummed out about something related to my child, one thing that gives me a lift is...
Looking at her baby pictures and think how far she has come. I try not to think about what she CAN'T do, but focus instead on all the things she IS doing, things I thought might never happen. And if all else fails, I ask her for a hug or a kiss. That's usually all it takes!
If it weren’t for [fill in the blank], I am not sure I would be able to get through the day
The way my husband and I split up responsibilities for caring for our child is unique. Shawn does all overnight hospital stays. We decided when she was born that it was important to us to keep our son's life as normal as possible. He wasn't yet 2 when she was born, and it was important that he have me home each night to tuck him in. The appointments and therapy sessions depend largely on our work schedules. My husband has the flexibility to work from pretty much anywhere, whereas I teach elementary school and have a fairly rigid schedule. We are both very active in caring for her, and I can't imagine doing it all without his support!
The way I deal if strangers stare at my kid or say things is...
I just smile, talk to her like a "Normal" child, and sometimes tell her to say hi. I tend to overcompensate so as to appear super happy, and I have learned to just tune some of the staring out.
One great site I’ve found lots of good ideas on is...
Pinterest. I'm hopelessly addicted, and it's the reason I don't blog much these days. It is essentially an online bulletin board, where you can "pin" ideas, recipes, decorating ideas, teaching ideas, funny things...the list is never-ending! It is constantly changing, so there is no way to ever be done pinning!
I rock because...
I have two happy kids. Before I had kids, one of my friends told me, "I can't make my kids healthy. I can't make them smart. But I can work hard to make them happy." That has been my approach with my kids. There are so many factors I can't control in our lives, but as long as my kids are happy, I'm happy.
Monday, December 26, 2011
This Is How I Do It: Andi of Bringing the Sunshine
Blogger: Andi Sligh of Bringing the Sunshine
Her kids: Sarah Kate, 8, who has spastic diplegia cerebral palsy and Nathan, 21 months, who has Down syndrome
My three biggest secrets to sanity are…
1. I have a "Thing" that is mine and only mine. Although I take pride in the accomplishments of my children and in taking care of my family, I don't want My Entire Being wrapped up in them. Before I had children, I was a "serious amateur" photographer with a darkroom in my basement. I bought my first digital SLR camera in 2002—three weeks before Sarah Kate was born—for an obscene amount of money, but I eventually set it aside for a point-and-shoot. After Nathan was born, I rekindled my love of photography and committed to a 365 project. I keep a separate blog where I post a photo that I've taken every day. I started it on January 1, 2011, and haven't missed a day yet. I never feel guilty about spending time on my photography, either, because the photos I take create a permanent record of our lives. They're a love letter to my family.
2. I have a plan! I have a schedule or a routine for just about everything—specific days for specific housework tasks, paying bills, grocery shopping and meal planning, etc. I keep a calendar of the week's appointments and activities open on the counter at all times for everyone (but mostly me) to see.Therapists don't generally work on Fridays and I avoid scheduling regular tasks on Fridays, so I use that as my "catch up" day. If everything has happened according to plan and I don't have any catching up to do, then it's a free day! I love my free days, so I try to make them happen more often than not.
3. I don't freak out when things don't go according to the plan. Something always goes awry. As long as I follow the plan 80-90% of the time, I call it good and keep moving.
I keep track of the kids' therapy and medical appointments by…
In addition to the weekly paper calendar that I have out on the counter at all times, I have a Google calendar account that tracks everyone's activities, appointments, travel dates, etc. Mr. Andi has his own Google calendar that he has shared with me, and I set up separate calendars in my own account for each of the children (I actually have two calendars set up for myself—one with Travel/Busy Dates and one with appointments). All it takes is a few seconds on my iPhone to see what's on everyone's schedule.
One way I relax (actually really, really relax) is…
I run. A long way. I've been a runner off and on since high school, but I took up marathons in 2008. Although I only run three days per week, I do it consistently and marathon training requires a long run (sometimes up to four hours for me) on the weekend. It's the only time that I get to think my thoughts without distractions or interruptions. I'm not sure if it's the rare ability to concentrate, the deep breaths while running long, slow distances, or something else, but I find that much of my stress dissipates during a run, and I do a lot of problem solving in those hours, as well. My best ideas happen on a run. And finishing a marathon is a feeling like no other—it gives me a sense of empowerment that translates into all areas of my life.
When I get bummed out about something related to my child, one thing that gives me a lift is…
Running, of course! A good run releases some of the stress in the pressure cooker. Beyond that, though, it really helps me to look back at how far we've come. Sarah Kate used a walker until she was three, and then canes for awhile after that. No, she still can't run or jump like most of her peers, but she's completed a few fun runs and has been on the swim team for the past couple of summers. I also remind myself that she is rarely (if ever) bummed out about her condition—if she's happy with herself and her life, why should I be sad?
If it weren’t for [fill in the blank], I am not sure I would be able to get through the day.
The brilliant blue eyes and captivating smiles of my children, and my husband's caring nature and sense of humor. I'm blessed in that both of my kids are healthy and happy—very happy!—kids, so I never have to wait long to see them smile. My husband has an absurd and relentless sense of humor (but in a good way!), whereas I'm typically more serious and intense. I keep him grounded, but he keeps me sane.
The way my husband and I split up responsibilities for caring for our child is…
Almost all of the doctor visits, therapy appointments, and the like falls to me; I don't work outside the home, so it's a better fit for my flexible schedule. My husband's work schedule is very unpredictable, he's essentially on call 24/7. Where he picks up the slack is in giving me a break when I need it, which with an active toddler is, um…every night! If it's my night to run, he handles dinner for the kids and gets them ready for bed, and even on the nights that I cook he cleans up (mostly…are all men deficient in wiping down kitchen counters)? On the weekends, he offers to take the kids with him just about anywhere he goes (he's got ants in his pants so he's "going" a lot, LOL!), and just having an hour or two to sit in peace and quiet in the house is often enough to recharge my batteries.
The way I deal if strangers stare at my kids or say things is…
I try not to take stares too personally, people just can't help themselves. If I notice someone staring, I typically try to disarm them by catching their eye and smiling at them. Often, people make comments that sound nice on the surface, but I suspect they are just fillers because the person feels awkward, and I let those go, as well. When other kids say things or ask questions, I do my best to educate them on a level that I think is appropriate for their age.
But of course… there are also the ignoramuses who Just. Say. The Wrong. Thing. Like the lady who talked loudly behind me to her friend in one of the queue lines at Walt Disney World a couple of years ago (we've had a few similar encounters, I'm sad to say), clearly intending for me to hear her express, "I don't know why people don't understand that strollers aren't allowed in the lines. Some people just think the rules don't apply to them." She got a carefully-worded rapid education in how strollers are sometimes used as wheelchairs for children who are small enough to fit in them, and that I had a special pass that allowed me to take my child in the stroller into the queue line. And I'm pretty sure she'll think twice before she says something like that in the future. :) As a general rule, though, I try to keep my cool, because I know that the example I set for my child is more important than zinging a stranger.
One great therapy technique I recently learned for my child from his/her therapist that I like doing with him/her is…
The best therapy technique I've found is getting her to do it by herself! Within the past year, Sarah Kate's physical therapist has talked to her in a much more "grown up" way. Instead of telling me what to do with Sarah Kate, she tells Sarah Kate what she needs to be doing (within earshot of me, of course). Because most of what Sarah Kate does is related to leg strengthening and core work, it's similar to workouts that I do at home. She's motivated to "work out" like me and to "train" for local 1-mile fun runs, so she'll do her exercises at home and "run" (that's what she calls it—actually brisk walk because she doesn't have the ability to run) around the neighborhood. For Christmas, she's getting some tech shirts and shorts to exercise in, and as soon as she's big enough to fit into one, I'll be buying her a sports bra, too (never mind that she won't have a *need* for it for awhile). I'm teaching her good habits that I hope will stick with her for life.
One great site I’ve found lots of good ideas on is...
Pudge and Biggie. Courtney and Justin adopted two babies with Down syndrome, a boy and girl, and there's always a laugh to be had and a smile to be found on their blog. In addition, Courtney is generous with ideas regarding therapy techniques they use with "the squibs."
I rock because…
I have the most amazing kids in the world. Being their mom has helped me grow as a person in ways I never would have otherwise. We live in a small Mayberry-ish town and everyone around here knows my kids, even though we've only lived here a short time. THEY are the rock stars. I'm just part of the celebrity entourage, and that's exactly how I like it.