Saturday, December 31, 2011

Support the Special Olympics by using coupons, a shoe club and other Stuff Worth Knowing About


Support the Special Olympics (and save $$$): You know that P&G brandSAVER coupon booklet you find in your newspaper every weekend? Tomorrow, Sunday, there's a Special Olympics edition. In honor of Special Olympics moms, P&G will make a donation to the Special Olympics for every BrandSAVER coupon redeemed. Oh, and for every new fan for P&G's Thank You, Mom Facebook page, P&G will donate one dollar to the Special Olympics—up to $100,000. Nice!

A shoe club! A shoe club! Sole Society is a new members-only club that sends you a pair of shoes—based on your style preferences—every month, for fees starting at $49.95. You get to pick your favorite heel, wedge, flat or bootie, styles available only through the society (you're free to defer months). I am a total flats girl; if I ever showed up in the booties at left, from the December collection, Dave would be all WHO ARE YOU AND WHAT HAVE YOU DONE WITH MY WIFE?! Perhaps I should surprise him. Although I received a pair of shoes at a Sole Society event and I chose... flats.

Worth seeing on the big screen: I tend to like movies about war; horses, eh. But War Horse is compelling on both fronts. I saw it in preview a few weeks ago through Moms and The City, and got sucked in. It's about a British boy—played by Jeremy Irvine—whose beloved horse gets sold off to soldiers at the start of World War 1. The film, which follows the two of them throughout many travails, is beautifully shot (hello, it's Steven Spielberg) and the war scenes, powerful. I'm a longtime fan of Emily Watson, who plays his mom. One particularly awesome line from the movie, spoken to her husband who has mentioned doing something unthinkable: "I may hate you more, but I'll never love you less." During the Q&A after the screening, Watson revealed there were actually 14 horses starring in the film (those horse unions are tough!) and shared tidbits about motherhood, like the fact that her kids—Juliet, 6 and Dylan, 2—don't watch TV, only DVDs, and the day her daughter projectile-vomited in business class on a plane. I asked who she found easier to work with: horses or actors. She smiled and said, "The horses."

Way to get kids to eat their veggies: Give them a choice, says food psychologist Brian Wansink, Ph.D., who's partnered with the Birds Eye people to get kids to down more of the green goodies. When kids were offered a choice of celery or carrots, they ate 18 percent more carrots than when carrots were the only option. Another good tip: give veggies funny names, like "x-ray vision carrots" or "broccoli bites." Create a virtual veggie plate on Birds Eye's Facebook page and they'll donate veggies for 10 meals to Share Our Strength, a nonprofit devoted to ending hunger among kids in this country.

Sign the petition: Earlier this month, a nine-year-old with autism in Mercer County, Kentucky, made headlines when his mom reported that his special ed aide had made him climb inside a gym bag for punishment to "control his autistic behavior." Now an 18-year-old college girl with autism, Lydia Brown, has created a petition on Change.org to end the abuse of students with autism in the area. You can sign the petition here.

Socially-responsible shopping: Deals site Treehouse Tykes sells high-end kid gear and clothes from brands including Le Petit Bateau, Nursery Works and Mod Mom Furniture at up to 70 percent off. Even better: Ten percent of each sale is donated to a charity or school of the buyer's choice.


Friday, December 30, 2011

This Is How I Do It: Katrina of Fickle Feline


This is the fifth guest post in the "This Is How I Do It" series, which features bloggers who have kids with special needs. They're explaining their tactics for special needs parenting, and other mysteries of the universe.

Blogger: Katrina Carefoot of Fickle Feline

Her kid: Max, 5, who has autism

My three biggest secrets to sanity are...

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

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This is the fourth guest post in a series called "This Is How I Do It" that features stellar bloggers who have kids with special needs. They're giving the rest of us the scoop on how they keep it all together (and keep their sense of humor).

Blogger: Sunday Stilwell of Extreme Parenthood

Her kids: Sam, 8, and Noah, 6, who have autism

My three secrets to maintaining some semblance of sanity are...

First of all to remember that God has a plan for my my sons. At times I may feel like I can't see the forest through the trees but I know without a doubt that God can. On my toughest days I lean heavily on my faith and rest in God's promises. Secondly I try to always find a way to laugh about everything...the good and the bad. Life is way too serious on it's own to lower myself to it's level and get off track. And finally I'd be lying if I didn't tell you that some nights a couple glasses of red wine after the boys are asleep is just what this Mama needs to relax and unwind from the day.

One way I am able to relax (actually really, really relax) is...

Knowing that every other weekend the boys go to their dad's house. On those weekends my husband and I are able to reconnect as a couple, go out to dinner, and do the shopping and other errands we can't do with the boys. But my most favorite way to relax is to wrap up in a warm blanket and take a nap in the afternoon.

When I get bummed out about something related to the kids, one thing that gives me a lift is...

Venting my frustrations on Twitter. I know without a doubt that no matter how angry or sad I may be about a situation there are no less than a dozen other parents with special needs children who can empathize and relate to what I am feeling. The #autism and #specialneeds hashtags truly are my go-to support system.

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

My husband, Mike. When I married for the second time I married for all the right reasons. I married a man who makes me go weak in the knees when he kisses me, at least once a day he makes me laugh so hard I snort my coffee, and most of all he loves my boys like they are his own. He and my younger son, Noah, have an especially close relationship and it warms my heart to see them play together.
The way my husband and I split up responsibilities for caring the boys is to just jump in when the other needs help. I am a stay at home mom and during the school year the boys are at school for 7 hours a day. During that time I recharge and do all the household duties while Mike is away at work. When Mike gets home he needs the time to unwind and decompress so I try to take care of the boys to give him that opportunity. After dinner we both do a bit of this and that to help each other out. If one of us feels stressed or overwhelmed the other is there to take over.

The way I deal if strangers stare at my boys or say something is...

To inform them that my boys have autism and that the behavior they are witnessing is normal for their diagnoses. However, I would be lying if there weren't times when someone has been especially ignorant and or rude that I haven't snapped, "My kids are autistic, what's your excuse?!"

One therapy technique I recently learned from my sons' occupational therapist is...

To buy a tabletop easel to help strengthen their arm and hand muscles. Both of my sons have very low muscle tone and therefore struggle with manipulating a writing utensil. Noah loves to write and color so a tabletop easel was right up his alley!

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

Pinterest. Believe it or not Pinterest is not just for recipes, funny pictures, and do it yourself craft projects! One company in particular is Pedia Staff. Their Pinterest boards are full of therapy ideas, articles about special needs, and product recommendations. I especially like the PECS (picture exchange communication system) ideas.

I rock because...

Of my kids. Before I had my boys I was a doormat. I didn't know how to stand up for what I believed in and I just followed the crowd when it came time to make a decision. Today I am constantly pushing the envelope, fighting for what I believe in, and striving to make a difference for others. My boys gave me that power and that drive to never back down. I owe it to them to pay it forward.

Wednesday, December 28, 2011

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.



Tuesday, December 27, 2011

This Is How I Do It: Debbie of Finding Normal


This is the second guest post in the "This Is How I Do It" series, which features amazing bloggers who have kids with special needs. They're sharing some of their secrets to special needs parenting.

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


Welcome to the first guest post in a series called "This Is How I Do It." I'll be featuring awesome bloggers who have kids with special needs; they're going to share how they manage to juggle everything and still keep their sense of humor (and, oh yeah, their sanity).

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.

Friday, December 23, 2011

Happy, Happy Holidays, All


As you read this we have hopefully made it through a day of plane travel to Park City, Utah. Dave was a little worried about my announcing our trip in public but if you are a person with ill intentions, please be aware that we have trained watch-frogs in our home who will croak furiously at intruders.

We're staying at the Lodges at Deer Valley; the place looks so rustic-gorgeous in the photos. Max loves going to big hotels, and he made sure to pack his Cars 2 pillowcase and sheets. Sabrina is psyched for ski school and drinking an obscene amount of hot chocolate. I'm particularly psyched about the National Ability Center, which offers adapted sports to people with disabilities—water sports, sled hockey, archery, cycling, horseback riding, skiing, indoor wall climbing and snowboarding. Max is going to try adaptive skiing. He hasn't taken to it in years past; whenever I've announced "Max, you're going to go skiing!" in the past few weeks, he's shaken his head furiously and said "Nooooooo!" So, we'll see how it goes.

Some of you may recall that I partially tore my ACL two years ago (and how sexy my knee looks in x-rays). I borrowed a brace from a neighbor and I'm going to get out there again. Wish me luck! Otherwise, I will be more than happy to sit around the lodge on my butt. I have a real talent for that.

Next week, I am featuring a series called This Is How I Do It. Awesome bloggers who have kids with special needs are going to share how they juggle it all (and still stay sane). Not a bad thing to read when you have the kids home with you all week!

Happy Chanukah, Happy Kwanzaa and Merry Christmas to all of you. Hope you are doing fun stuff with your family.

Love,

Ellen

Wednesday, December 21, 2011

What to say when a friend has a baby with special needs?


The other day, a woman in my circle of acquaintances emailed me this question:

My husband has a friend who just became a father for the second time. We heard through the grapevine the baby has Down syndrome. They've posted some photos on Facebook, where they have received dozens of comments of the usual ilk—congratulations on your bundle of joy, what a beautiful baby, such a cute head of hair, etc. What should we say to them (not necessarily on Facebook)? We want to say something that is not untrue and not unkind.

Immediately, I was transported back to that snowy morning nine years ago when I sat at our kitchen table, laptop open in front of me. Dave and I had come home from the hospital, where baby Max lay in an incubator in the NICU, to grab some clothes. I stared blankly at the email list of friends and family that I'd put together in the weeks before my due date. The plan was that Dave would send out an announcement blast when Max was born, only then things went nightmarishly wrong. I wasn't sure what to tell people.

Finally, I typed. I don't remember the exact words but they went something like this: "We had our baby three days ago. His name is Max and he weighs 7 pounds and 8 ounces. There was some trouble at birth and we don't know what the future holds, but we do know that we have a beautiful boy."

People started sending back emails and cards. Some simply said, "Congratulations on your new baby boy!" and those seemed a bit empty to me given the horror we'd just been through, although I knew that people weren't sure what to say. Some friends said things like "You are so strong, you will be able to handle this," and told me that they were there to talk or to come over and just hang out. Those are the notes I've saved.

There's no one standard response for what to say to a parent who's had a child with special needs; every birth and every parent's reaction to it is different. But I think it's important not to assume that parents consider it a tragedy when they have a child with Down syndrome or other special needs. Condolences are for deaths, not births.

I told the woman who had emailed me that she couldn't go wrong with simple words—saying congratulations, and that she and her husband would be there for the couple. We both thought it would be a good idea to pose her question here so all of you could weigh in.

So please, share your thoughts. When you had your baby, what did you most want to hear from friends?


Tuesday, December 20, 2011

My favorite meal of the week


The other day, Sabrina came home from school with a booklet she'd made titled "If I Could Give You Anything: My Wishes For the Holidays." One of her wishes: "I'd like to give my family a big breakfast."

Yep, our family loves breakfast, and so when Kellogg's and The Motherhood offered to sponsor a post on it I was all, Bring on the turkey bacon! (Full disclosure: I very much like lunch and dinner, too, along with eating in general.) On average, families spend about 17 minutes a day preparing and eating breakfast, according to a survey the Kellogg's people did (because, you know, it wouldn't be like them to do a martini survey). That is approximately 10 minutes more time than our family spends on b-fast during the weekdays—and 30 minutes less than on Sunday mornings.

For us, Sunday a.m. breakfast is the most relaxing time of the week. It's the only day when Max doesn't have therapy appointments, and so there's nothing to schedule the morning around. Our day, and our stove, are filled with endless possibilities, as opposed to weekdays, when we're more likely to be scrambling to get out the door than scrambling eggs.

The kids think cooking anything for breakfast is good fun, and I'm happy to let them stir up pancake batter and add blueberries or chocolate chips; I slip in flax seeds when they aren't looking, because I'm sneaky that way. Then we make smiley faces with syrup. There's also time to teach them about the joys of kitchen cleanup and that, actually, the DustBuster won't pick up batter from the floor but isn't mopping soooo much fun?

Once we're done eating we hang out at the table, looking at iPad games (the kids) and the Sunday paper (me and Dave) and generally feeling happy to be at home, all together, with nothing to do but enjoy each other's company.

Wishing you and your family many, many happy breakfasts this season—and that your kids also enjoy clean-up!


Survey stats from the Kellogg's Breakfast in America Survey by the NPD Group

If you can't go to the Cub Scouts, bring the Cub Scouts to you


For weeks, Max kept refusing to go into the church where the cub scout meetings are held. I emailed back and forth with the den leader, and we decided the boys would come to our house and bake cookies. Oatmeal cookies, he decided, and I held my tongue from saying "But don't you think double-chocolate-chip cookies would be even better, because they are my favorite?"

That night, Sabrina and I headed out; I wanted Max to spend time alone with the kids. The two of us hung at the library, where she showed me the gingerbread men she had made the other day with our babysitter—one for her, and one for Max. Then she inexplicably wanted to hit the olive bar at Whole Foods, so off we went.


Dave texted me a play-by-play account of what was happening at the house:

Boys arrived

Max upset and crying

He's upstairs in his room and he's calmed down

He wants to go downstairs

He's showing the boys his iPad

By the time we got home, the only trace remaining of the kids was a flour-y kitchen floor and a plate of oatmeal cookies. Max hadn't interacted that much with the boys, but it was a start—one of the first inclusive activities he'd ever participated in.

Of course, we can't host every meeting at our house. Now that Max has met the other cub scouts, though, he might be a little more amenable to going into the regular meetings.

It wasn't what I expected to happen, but it was still good.

I think that just about sums up our life.

Monday, December 19, 2011

The songs that make you cry

I cried in the car three times the other day. I was on an hour and a half drive, I had the radio tuned to a station that was only playing holiday songs, and "Have Yourself A Merry Little Christmas" kept playing because practically every singer has done a rendition of it, except The Wiggles.

The line "Through the years we all will be together, if the fates allow" is the one that got to me. I thought of my dad, and it made my heart ache. It felt worse if it was the Karen Carpenter version of the song, because she's already tragic to start with, you know?

Then Same Old Lang Syne by Dan Fogelberg came on and the DJ remarked, "This song always inspires me because it gives me hope for the new year" and I was all, Are you KIDDING me, because this is perhaps one of the saddest songs ever. And again, the tears flowed. How can you listen to this song and not get emotional? Or suddenly feel kind of old? Or maybe that's just me.


The song that's saddest of all to me is Norah Jones' Come Away With Me. Max was born the year her debut CD came out, and it was what I listened to in the car when I drove Max to doctor and therapy appointments. I get totally emotional when I hear that song because it brings me back to that sad and anxious time in my life. Yes, I wanted to come away. So badly.


Is there a song that makes you all weepy?

Friday, December 16, 2011

And I'm so proud of your child, too


I am at Max's school holiday concert, and I am on a bliss high. Max's class hasn't even gone yet; it's the other kids who are making me this happy. As parents of kids with special needs, we know just what goes into the successes our kids have, and how even small achievements can seem like big-time wonders. And so I am cheering for your child along with mine, and feeling the pride.

I watch your child, the M.C. of the event, as he enthusiastically announces each song. I know just what it takes for our kids to articulate words like that, and what a triumph it is. And I am celebrating right along with you.

I watch your child jingling bells for The Snowmen Go Marching. I watch your child trying hard to get his iPad to speak his name, and he does. I know just what it takes for our kids to move a hand or finger like that. And I am celebrating right along with you.

I watch your child walking into the performance space in her walker. And, wow, she is cruising. I know how mind-boggling awesome it is when the child you were told might never walk is on the go. And I am celebrating right along with you.

I watch your child playing "Jingle Bells" on the keyboard set front of his wheelchair. "C C C, C C C" chants the music teacher, and your child listens intently and gingerly taps out the notes. I know what a feat it is to learn to play. And I am celebrating right along with you.

I watch your child looking impossibly adorable in a big white chef's hat that keeps falling over her eyes. She is singing along to Chicken Soup With Rice when she's not pushing up her hat and doing a great job of stirring the air with her wooden spoon. And I see your child standing next to her, belting out the words loudly and pointedly. I know what a feat it is for our kids to sing. And I am celebrating right along with you.

I see my child standing with his class, singing Rock and Roll Snowman. He is playing a purple cardboard guitar, swaying and generally rocking out. This is the first time he has willingly and happily participated in a concert, and he is smiling the most gigantic smile.

And I know that you are celebrating right along with me.

Thursday, December 15, 2011

Win a $50 gift card to BJ's


Part of the fun of roaming around BJ's Wholesale Club in December—aside from the abundant food samples, Dave's fave part of visits—is all the unexpected gifts you find. The club invited a bunch of moms in for a tour, complete with gift bag and gift card. I got the kids a sparkly lava lamp for $12.99 (until that moment, I had never realized just how much they needed a lava lamp) and a three-pack box of wine toppers made of hand-blown glass (hello, hostess gift). There was jewelry and food baskets and electronic stuff and Disney Princess and Cars 2 toys and iTune gift-card packs and cute pj's and veggie platters for parties and fab cakes and well, basically everything.

Consider yourself warned, there is a highly addictive substance at BJ's, and it is known as guacamole. I picked some up for Max's birthday party and not one but three different parents asked where I'd gotten it from. Of course, I said I made it. He, he.

BJ's is, I learned, the only wholesale club that accepts coupons. And if you buy a multi-pack of packaged items, such as toothpaste or babysitters (oh, wait, they do not sell babysitters), you can use a coupon for every single item. Rejoice!

Even more impressive: BJ's Feeding Communities program through which, every day, unsold food from clubs (including meat and produce) is delivered to a local Feeding America food bank. So far, they've donated a million meals. Until 12/31/11, for every "Like" on Facebook, BJ's will donate $1 to the program, up to $250,000.

The nice people at BJ's gave me two $50 gift cards to give away. To enter, just leave a comment below about your most-purchased items at wholesale clubs like BJ's. We buy a ton of paper towels (Max is one messy eater) and chocolate milk (the kids can put that stuff away).

Not a BJ's member? Not a problem. You can sign up for a free trial membership (note, it expires on 12/31).

Bonus entries:

Like BJ's on Facebook
Like Love That Max on Facebook
Follow Love That Max on Twitter
Tweet about this giveaway (one a day). A tweet: Win a $50 gift card #giveaway from @LoveThatMax & @BJsWholesale, ends 12/19, http://tinyurl.com/7lys4a9

The giveaway is open until Monday, December 19 at 11:59 EST, and is for U.S. residents 18 and older. I will randomly pick the two winners at random.org, alert you by email and announce them here. Note, to enter you must leave your email below if it is not visible on your blog as my ESP is kaput.

Helping kids with special needs enjoy the holidays: more ho, ho, ho, less woe


This morning, as I was listening to my shower radio, the DJ mentioned a new poll that showed Christmas is the happiest day of the year. That may not apply to you if you don't celebrate that holiday, of course. And there's also a chance it won't apply if you have a kid with special needs. Because the holidays can be very un-merry for kids who don't like noise, crowds, hustle and bustle, or relatives who pinch their cheeks (come to think of it, I don't like relatives who pinch my cheeks, either).

I'm a Max expert, not a child expert, but over the years I have come up with a few things that have helped make the holidays more ho, ho, ho for kids like Max with special needs:

• I let him pick out his own gifts. Perhaps not as fun as a surprise, but Max doesn't like surprises, even happy ones. Max likes routine, regularity, order, and anything with the Cars 2 logo. Knowing what he's going to get makes him content—a good thing.
• We find calm holiday activities to take the kids to (read: nothing at the mall) and we get there early. Our town sets up an adorable Dickens village every year, complete with miniature homes and horse-driven carriage rides on weekends. We're one of the first people to show up, and both kids really enjoy it. Note, although Santa can wig out kids with special needs, check with the management office at local malls to see if they have early visiting hours and private areas for kids with special needs—some now do. And if they don't? Suggest it, or ask if they'll accommodate your child. Go, you!
• We have a few relatives and their kids over for a holiday party, not a bazillion of them. Smaller crowds are easier on Max... and, bonus, easier on clean-up! (No offense, relatives.)
• During the party, I carve out quiet time for Max. He hangs out in his room and colors or plays a game (or ten) on his iPad. Or I may invite one or two kids to go upstairs and play with him there. If we're at someone else's house, I do the same.
• I'll get a babysitter if there's a big holiday party our family is invited to. I used to feel guilty leaving Max at home while the rest of us went out, but that's his idea of a good time—and that way, we all enjoy.

Oh, and that whole holiday card thing? Max does not like posing for photos, especially for ones with all of us or just with his sis. This used to torment me. But I just let go. I order digital cards designed to feature a bunch of images, and choose one OK family shot and several awesome single shots of the kids.

Letting go of holiday fantasies is a good idea, in general, when it comes to kids with special needs; focus on the reality of what makes your kid happy (and calm) and you'll all be better off.

If all else fails, hit the spiked egg nog.

What sort of tips have you come up with over the years for making the holidays happier for your child?

This is one of a series of posts sponsored by CVS Caremark All Kids Can, a commitment to making life better for children with disabilities. "Like" them on Facebook!


Photo/janoid