When special needs moms know better than the experts do

"The speech therapist said because of his lack of comprehension, he wasn't yet ready for a speech device," a mom I recently met told me. Her five-year-old son has developmental delays, and is nonverbal. He was sitting nearby, poking around on an iPhone.

"Have they tried one with him?" I asked. 

"No," she said.  

Clearly, this child was into technology. Earlier, I'd seen him playing with an iPad.

"You should press the therapist on that," I said. "These days, you can simplify devices and speech apps so they work for kids at a really basic level of communication, just even saying 'yes' or 'no.'"

In a second, I was flashing back to the time when Max was 5 and I told the head of the speech department at his old school that I thought he should try a speech device.  

"He's not ready," she said, point blank.  

"How do you know if you've never even tried one with him?" I asked.

Dave and I ended up getting Max evaluated for an augmentative communication device, and those experts decided he was ready for one. He got a Dynavox; it cost close to $2000 and the district paid for it. This was before the iPad came along, and that thing was a clunker. Max couldn't even pick it up. I hated programming it. Still, for the first time Max had a voice—and it was because I, Mommy Expert, said so.

Soon after, I pulled Max out of that school. I'd long felt they weren't progressive enough and the resistance to the speech device was the last straw.

If there's one thing parents of kids with special needs know, it's that we need experts—many, many experts—to help our children. And if there's another thing we know, it's that the experts aren't always right. 

That speech therapist was operating out of ignorance. She didn't have experience with communication devices, which she eventually admitted. Still: One of the benchmarks of a good therapist or teacher is being open to change, along with parental input. And while it shouldn't be our jobs to push the experts to be more innovative, sometimes we have to.

Over the years, I've heard from parents who thought their speech, occupational and physical therapists weren't adequately engaging their kids. I usually ask the same questions:

1) Have you said anything?
2) Have you made suggestions about what would improve things?
3) Do you have another therapist you can switch to?

Experts know their stuff. But parents know their kids best of all. And even though it's tricky to tell when something isn't right because, after all, they are the experts and they have their degrees, you need to trust your gut. And feel comfortable speaking up, too, though I know that's not always easy, either. Ultimately, we are our kids' best advocates. I grew into it over time, but I knew it from the first weeks of Max's life.

The doom-and-gloom pediatric neurologist had left me despondent about Max's future, and I told the NICU social worker that I didn't want to talk with him again unless he could find something, anything positive to say. As bewildered as I was by what had happened and by this new medical world I was navigating, I realized that I needed some hope to hang on to for Max's sake.

"What good will it do Max if I'm a mess?" I said to that social worker. "That doctor needs to stop depressing me more than I already am."

"You're going to be a great champion for your son," she told me the day we left the hospital with Max.

We are all champions for our children. And when an expert's behavior is wearing us down, when we hear "No" or "Not possible" or "Not ready," it's time to question, push and persevere.

If we don't, who will?

The Santorum Effect: What Rick's showing the world about special needs parenting

Today, Rick Santorum returned to the campaign trail after taking a weekend absence to be with his 3-year-old, Bella, who had pneumonia. She made what he called a "miraculous turnaround." Still, Bella's health is a constant concern for the former Pennsylvania senator and his family. Bella has Trisomy 18, a genetic disorder that can cause abnormalities in the heart, brain, stomach and other organs.

Rick Santorum has come under fire for campaigning with a daughter who has such significant issues. "Her life is measured in days and weeks," he said at a dinner speech in October, going on to acknowledge how often he'd been on the road. "I feel like I wouldn't be a good dad if I wasn't out here fighting for a country that would see the dignity in her and every other child," he added. Santorum is opposed to health-care reform legislation, which he considers a threat to kids like Bella, even though the law's supporters note that it would help children with disabilities or illness because insurance companies will no longer be able to impose annual or lifetime limits on coverage.

Last month, when Christiane Amanpour interviewed him, she asked how he can justify continuing his campaign, given his low poll ratings and his daughter's situation. "Well, I don't worry about the polls," he told her. "I worry about what I'm trying to do to be the best father and best husband I can be."

Sarah Palin came under fire in 2008 for running for office with young kids, including Trig, who has Down syndrome. Nasties called Trig a "prop," and the same has been said of Bella. Yet Rick Santorum has zoomed the spotlight onto something many of us grapple with: having a work life and caring for a child with special needs.

The family/work conflict Santorum is facing is extreme, to be sure. He has a child with a rare and serious condition, and his job is trying to be our next president. And yet, his situation is common to many of us who work and have kids with special needs. Like Santorum, you are often torn between the two—and sometimes criticized for your choices.

I returned to my job as a magazine editor when Max was three and a half months old, with the agreement that I could work from home on Fridays. We hired a wonderful nanny. Of course I had major reservations about leaving Max; he'd had a stroke at birth, and he was at risk for all sorts of delays and problems. But I had a lineup of therapy sessions in place, including ones on Friday and Saturday. I thought it would be healthy for me to not be home all the time, given the extreme anxiety I had. I welcomed the distraction of work and the potential to feel in control of something, because I felt so helpless about making Max "better." Also, I liked my work. I had always planned to be back in the office after my maternity leave, and I didn't let Max's special needs derail me.

My parents were blatantly dubious about my decision. "Don't you want to take off more time to be with him and help him?" a close friend asked, her disapproval implicit. I was thrown. Yes, I wanted to help my son. Desperately. No, I did not think I had to be at home with him every weekday to do that. "I think I'll be a better mother if I work," I told her, and left it at that.

I worked full-time until Max was almost 7, when I got laid off. It was a welcome severance and I've stuck with freelance ever since. But I do not regret having worked when Max was younger. It was the right thing for me to do.

Rick Santorum feels that the right thing for him to do is campaign for the presidency. While I don't agree with his politics, I respect his decision. Santorum is showing the world that parents of kids with special needs are like any parents: We don't always sacrifice our work lives for the sake of our children, nor should we be expected to. Contrary to popular belief, we are not saints. Holding us to a higher standard of morality only makes us more likely to be denounced for making real-world choices.

As parents of kids with special needs, we sometimes face tougher predicaments than other moms and dads. Still, that doesn't give people the right to question our decisions—or our love for our children.

Photo: Campaign ad screen shot

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.

This Is How I Do It: Sunday of Extreme Parenthood

nd

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.

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.

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.

Group therapy: How do you juggle all the doc and therapy appointments?

One of the things that always amazes me about this blog is how much great advice I get, on everything from therapies for Max to how to get rid of groundhogs. I think there's lots more we can learn each other—like, how to get rid of squirrels and maybe just maybe info about stuff that will help our kids and us, too. So I'm going to throw out questions once in a while. While I cannot provide cookies or couches to lie down on, I hope we can all benefit from the group therapy (because, you know, backyard groundhogs can really wreak havoc on your soul).

What's on my mind lately is carving out time for Max's appointments. The serial casting threw us for a loop; we've needed to take Max out of school and get him to the hospital once a week, which is a challenge with two working parents. I'm using the royal "we" because this one's fallen on Dave, who has more flexibility with work. The night cast has to be done during a week when we're away at the beach, though, and so I'll be driving Max back to the hospital from vacay.

Dave and I are good about co-juggling Max's appointments. We always do the biggies together, like Max's annual visit to the neurologist. When he was younger, we went together to every single doctor's appointment, mostly because we were both so terrified of what was happening and needed each other for support. But now, if one of us takes him alone—say, to the pediatric ophthalmologist (Max had vision problems when he was a baby, and seems to be OK now)—that's cool.

Therapies are a whole other circus act. Every September, I type out the schedule and hang on the bulletin board in our kitchen. I've worked hard to find therapists who'd come to our house, which was especially critical when I had a full-time job. The occupational therapist comes Monday and Wednesday. Tuesday is music therapy. Thursdays, two awesome teen boys from a program come to hang out with Max. Friday and Saturday morning, speech therapy. Sunday is our only free day, though I'm not sure Max cares about having a day off. He doesn't yet think of therapy as "work"—I've always told the therapists never to say "Let's do some work" but, rather, "Let's go play" or "DUDE!!! Let's chill!" (OK, not that.) Max has had therapy since he was a month old. It's a natural part of his life.

A lot of our life revolves around Max's therapies, and that's fine with me. He is still young, and we are determined to get him as much help as we can. "Therapy up the wazoo" is our philosophy. Also, "Chocolate ice-cream up the wazoo."

What about you: How do you juggle all the doctor and therapist appointments?

The untended garden: Why our kids don't always need us

I finally got around to looking at the vegetables we're growing. May was freaky busy, and I never found the time. But when I came home from work the other night, Dave was with the kids at the gym and I had a whole hour to myself. So I did something wild and crazy: I headed out to the backyard.

I didn't know what to expect. Maxsutawney Phil hasn't been spotted for a couple of weeks now, so he didn't seem like a particular menace, although the squirrels in our neighborhood are both numerous and aggressive, a bad combination. We'd never gotten around to getting the pepper spray or any of the other suggestions people had (sorry, Felicia). And watering? Not much. I was skeptical there'd be anything out there besides weeds.

But there they were: one green tomato and then, a ways down, a bunch of little red peppers, surrounded by weeds. I stooped down to look at them, amazed at their tenacity. Then I plopped down on the grass and hung out for a few minutes, enjoying the quietness and the fact that nobody was whining or fighting or demanding chocolate ice-cream.

I thought about the past week and how worried I'd been about Max and his cast, which had done him good (and which he had gotten very attached to). As I sat there, something occurred to me: Max is doing well not just because of what we do for him or his teachers or the therapists and medical pros in his life, but because it comes from Max.

This is something that's easy to forget when you're the parent of a kid with special needs. Some days, you feel as if all the responsibility rests on you to help your child, enable him, make him better. You forget that, like any kid, your child has it within himself to grow and thrive, no matter what the circumstances... just like those little peppers that could.

I headed back inside, feeling unusually calm. A few minutes later the kids came home whining and fighting and begging for chocolate ice-cream, of course.

How to ask about my child with special needs

The comments on yesterday's post were absolutely, positive awesome. I hope a whole lot of other parents out there (i.e., ones who don't have kids with special needs) read them and learn from them. Heck, I learned from them. Much wisdom there.

An interesting topic came up toward the end of the day: people who ask about your child. What's the "right" way to do it? Is it appropriate? What makes you want to go "ARRRRGH?!"

First off, let's assume the question is coming from someone who does not have a child with special needs. Because there are no boundaries (for me, anyway), with other parents in the special needs universe or with adults who themselves have disabilities. It's like within ten seconds I am telling them about the brain damage and the Botox for the drool and the nasty scar I have from the c-section. OK, not that.

Let's assume we're talking about how you deal when parents of so-called typical kids or strangers ask about your child. This doesn't happen often, but I have had people say "What's wrong with him?" I've had the same reaction Jo and many of you have: WHY ARE YOU SAYING THAT? It's a suck-y question, as it focuses on the disability and assumes something is "wrong." Also, it's rude and instinctively makes you want to respond: "Nothing. What's wrong with you?!"

As Debbie put it on Jill's post, "You can ask what her diagnosis is...but when you ask me what's WRONG with my child, I will probably tell you nothing. And get defensive and sad because while she has special needs, there is nothing wrong with her." And as Natalie said, "Anyone over the age of six or so should know not to use that terminology."

In general, I think it's better to speak up than to just stare—but it all depends on how you ask the question.

I have also had people play Guess The Disability. A common one: "Oh, does he have autism?" I'll usually answer, "He has cerebal palsy." If the person keeps asking questions, I'll keep answering them. Like I said, I've learned to use these opportunities to educate and raise awareness. I want people to know that babies can have strokes, that my son is not a tragedy, and that kids with special needs are in many ways just like other kids and should be treated as such. All bets are off, though, if I'm in a pissy mood. I am not Mother Teresa. Like any mom out there, sometimes I just don't feel like talking.

The best conversations I've had with other parents who don't know us well, and even with strangers, have been the ones that have started off with some nice observation about Max—like, "He has the best smile!" Or ones that have not started off about Max, and then circled around to him. It's common sense: Once you have rapport with someone, it's easier to get personal.

So, how do you guys want to be asked about your child with special needs?

The progress I never think about (that happened on its own)

Like many parents of kids with cerebral palsy, I'm very focused on Max's physical and cognitive progress.

The Botox shot in his right hand has done a nice job of loosening it up, and he's been spontaneously using it to lift more things. Score! The Botox to his salivary gland hasn't had a real effect on the drooling, though, so we'll have to consider other options. Tomorrow, the serial casting starts. There's no purple kind available, I've been told, but I've got a bunch of Purple Sharpies. I just sent out Dave to buy Max a new purple truck to distract him. "If there's no purple truck, just find anything fun that's cool and purple," I said, and so Dave is currently on a purple hunt in Target.

Max is also progressing with reading, and getting into spelling. The other day, he pointed to the letter "g" in a sign and then to my green shirt. He was telling me he knew "green" began with a "g." I'm loving it. I'm high on it.

So I've been all sorts of focused on Max's muscles and limbs and brain power. I haven't given much thought, if any, to his emotional maturity. I just couldn't let myself get concerned about it—too many other worries on my list. It was something I figured would happen over time, and it has.

In the past year, Max has grown less fearful of visiting new places and trying new activities. He gets upset when I tell him he's misbehaved. He gives his little sis this "What's your problem?" look when she's having a tantrum. He gets concerned by crying. When my mom called in the middle of the night a few months ago to tell me that my dad had died and I sobbed, Max was there, and he couldn't stop kissing me.

Over the weekend, we were at Max's favorite place in the whole wide world, a beach condo we go to during the summer. Max has, historically, wailed whenever we've left. Perhaps you've heard him? He'll traditionally start the second he sees me packing up our bags, and not let up till we're a half hour down the highway. It makes going home so pleasant.

Only here's what happened this time around. It started when I put a packed bag filled with the kids' clothes in the kitchen, and stepped away for a minute. When I came back, it was gone. I looked in the bedroom. Max had dragged the bag in there and was quickly tossing clothes into an open drawer.

"Max!" I said. He looked up with a devilish grin on his face, and then we both laughed hysterically.

When we drove away, Max got a little weepy. "I know, Max, you don't want to go home," I said. "Me either. We'll come back soon, OK?"

And just like that, he quit sniveling and nodded his head.

Max has fallen a little behind with his walking because of his tight right foot. He's moving ahead with the emotional maturity.

A few steps forward, a few steps back: That's how it goes, right?

Are we too sucked into Special Needs World?

Tonight, I got unnerved when I saw a new comment on the post about Max and sleepaway camp. The very wise Gina, who blogs at Inky Ed, is all about inclusion; she mentioned sending Max to a camp for all kids, not just "special" ones. Her little boy, Mac, is in a mainstreamed school in Australia.

CLICK. That was the sound of the proverbial lightbulb going on over my head.

THUD. That was the sound of my heart, dispirited that I hadn't thought of it myself.

I sent Gina a few messages on Twitter. "I wouldn't nag if I didn't think you had it in you to challenge your own thinking and be open to a different path for Max," she responded.

I have been thinking about nothing else since.

Every extracurricular activity in Max's life is geared toward kids with special needs: Softball league, Sunday programs, school, probably camp. He has not one so-called typical friend.

Max is all special needs, all the time. And when it comes to bringing him up, so am I, it seems.

Am I doing Max wrong?

I'm thinking the answer is yes.

Trust me, I don't mean I'm a crappy mother for not having done inclusionary activities. Max has benefitted from the adapted ones we've tried. The personal attention and direction he gets from professionals and volunteers has helped him develop, gain confidence in himself and thrive. I am beyond grateful for them. I appreciate how they welcome Max, quirks and all, which I just wrote about. But it could do Max a world of good to be at activities with typical kids.

Last year, I went to check out a day camp for Sabrina. It was THE quintessential camp—on a lake, with little huts for arts and crafts and cooking, canoeing and other water sports, a big outdoor arena where hordes of kids were dancing around and singing for some sort of event. I choked up as I watched it, hiding my face behind some pamphlets they'd given me at the camp office. I desperately wanted Max to experience camp like that, but I didn't notice any kids with physical disabilities.

"Have you ever had a kid with disabilities here?" I asked the camp director.

He thought for a minute. "Yes!" he said, brightly. "We once had a child with autism! He was on the mild side."

"So you haven't had a kid with physical disabilities?" I asked. "I have a child with cerebral palsy who has some challenges."

"No, we haven't," he said, not unkindly, but he didn't seem particularly interested in continuing the conversation and I didn't force it.

I haven't thought about that again till now. Repressed it. Shove, push, right to the back of my brain, along with all the other pain.

Months ago, I got recommendations for special needs camps from moms I know and Max's therapists. We applied to a sleepaway camp and also a day camp, got accepted. Like me, friends and family thought it could be good for Max. They didn't think about the potential for inclusion; why would they? It seems like a no-brainer that he'd benefit from camp for kids with special needs. I drank that camp Kool Aid too.

No doubt, a special needs camp will be great for Max, especially because it's his first year at one. But including him in a typical camp could open up a whole new world for him. Realistically, it won't happen this summer. I'll have do to my research; I know of no camps that have a mix of kids. Calls will be made. Much convincing might have to be done. Much paperwork would definitely ensue. I'd need to find Max a one-on-one aide. But I don't just think I can pull it off—I know I can, because I will basically make anything happen for this child (excluding the other day when he asked to take a spaghetti bath).

Including Max in our local school isn't the right thing for him now; they aren't fully able to accommodate all of his therapies. But camp? That's a real possibility. Who knows, I might even be able to get him into Boy Scouts.

Tonight, I stepped out of Special Needs World and noticed places with other possibilities. I'm a little scared, a little how-are-we-gonna-do-this but mostly, excited.

Do you wonder about including your kid in typical activities? Have you? I sure could use some encouragement here.


istock/StanOd

Cerebral palsy is a sneaky demon

Sometimes, I forget all about the cerebral palsy. It's not hard to, because Max is such a happy, healthy kid. Sometimes, it blindsides me, as it has recently—and shatters my calm about being mom to a kid with disabilities.

It started a couple of months ago, when I asked one of Max's speech therapists why he has so much trouble saying "hard" consonants, b's and p's and k's and d's. She explained how a lot of it has to do with breathing control, and how in turn that has to do with trunk control and weak core strength.

I was more aware of these issues when they prevented Max from crawling and walking, but once he was on his feet and getting around, it was no longer up there on my list of worries, replaced by other priority worries. Now it was back to haunt him, and me. I organized a conference call with his physical therapist (at school), occupational therapists (the one at school and the one he sees privately twice a week) and speech therapist (at school). Over the years, I've found that calls like these are the fastest, best way to come up with ideas.

I learned some new stuff during the call—for instance, Max's physical therapist had him doing sit-ups. She recommended I do them with him at home. So I've been sitting on his feet while he's lying on the floor and gently pulling him up by his arms. To motivate him, I do sit-ups, too, which cracks him up. I am not sure belly laughs are helpful for his core control, but at least they entertain him.

Max's PT reminded me that Max has been doing yoga at school, and sent home some positions to try.

The poses are easy enough, like the snake.

I don't think either of us will be doing this one anytime soon although if I had to take bets, my money is on Max.

So, I knew we had to focus more on core strength. Then a couple of weeks ago, the physical therapist told me that Max's right foot is tight. It's one of the reasons his new braces aren't fitting him so well, she thought. I hadn't noticed that but when he came home I looked and, sure enough, his right foot was turning in. Uh-oh. And...sigh. He still manages to walk OK, though he limps ever so slightly, with his foot slightly arched.

When I stretch his right foot, as we're supposed to do, it feels really stiff and impossible to flex. It is the cerebral palsy, and my child is caught in its grips.

"Does it hurt?" I've asked Max. "Noooo," he says, shaking his head, and it brings me some peace to know that he's not in any pain, and that he is able to tell me so.

We took him to the physiatrist last week. Turns out that Max's recent growth spurt has affected the muscles of his right foot (it's his more challenged side, since the bilateral stroke he had was worse on the left side of his brain). Because he suddenly shot up, the tendons couldn't keep pace. They were already on the tight side, but now they are even more so (spasticity, they call it). So Max will get a series of casts for three weeks, one a week. Each will subsequently stretch his foot a bit more, to relax the muscles and set them straight. Sadly, the casts do not come in purple (I asked, of course).

Meanwhile, tomorrow Max is getting Botox in his right hand, to help loosen it up. We're also trying Botox in his jaw to see if it helps the drool ease up. I still have no set plans to open that Mommy and Me Botox Clinic that could earn us a fortune.

This sucks. Just. Plain. Sucks. I always knew that during adolescence, with its hormones gone wild, Max would be at renewed risk for seizures. I never thought that at age 8, the cerebral palsy would flare up.

Of course Max will still be able to walk, no matter what. It's not going away. But the walking has been a hard-won victory, years of toil (Max) and tears (mine), and the prospect of regression is unnerving.

Tonight I am angry, so angry, at the cerebral palsy.

20 More Reasons Moms Of Kids With Special Needs Rock

What, you thought there were only 20 Reasons Moms Of Kids With Special Needs Rock? As if! I adapted several of the below from the amazing comments on last year's post. Rock on, mamas!

* * * * *

20 MORE REASONS MOMS OF KIDS WITH SPECIAL NEEDS ROCK

1. Because we are geniuses at talking our way into whatever it is that will make our children's lives easier—at restaurants, amusement parks, school, wherever.
2. Because we help people see the amazing kid behind the special needs. Put that pity away, please.
3. Because we have learned the language of disability and medical conditions, so much so that sometimes people ask if we ourselves are medical professionals. Too bad we have nobody to bill.
4. Because we are so over "typical."
5. Because we work through those not-doing-enough-for-my-child guilt trips...and move right along to feeling guilty about something else. Next!

6. Because we have endless determination, dedication and energy.*

(*This motherhood brought to you by caffeine.)

7. Because we have cried more tears than we ever thought humanly possible, but never let our kids see the sadness.
8. Because we still have a healthy sense of humor. And no cellulite! Or we do have some but we have no time to care!
9. Because we know that the timeline for when our kids do stuff doesn't matter. Even when our hope is running low, they somehow surprise us.

10. Because we always put ourselves last, although we know that mani-pedis are our God-given right.

11. Because we do not let our kids' habit of banging their knees rhythmically under the table or their obsession with all things purple or whatever quirk drive us crazy...usually.

12. Because we have extreme endurance—we're talking Ironwoman endurance—when it comes to dealing with the insurance company. Press 3 if you'd like to tell off a representative!

13. Because we listen to other mothers complain about the small hardships of their lives and we don't say "You think you've got it hard, sister?!" We just think it.

14. Because we keep our composure amidst all the frolicking tots at the playground, birthday parties and playdates, no matter how painful it may be.

15. Because we also keep our composure when people stare. OK, maybe we don't. HEL-LO, DIDN'T YOUR MOTHER TELL YOU THAT IT'S RUDE TO STARE?

16. Because when our children accidentally roll over our feet with their walkers or poke us in the eye when they are flailing their arms or almost knock out one of our kidneys, we smile through our pain and we do not sue them.

17. Because we spend countless hours filling out forms and doing paperwork. Where's the app for that?

18. Because just when we think our heart can't take any more, it takes more.
19. Because we will do anything in our power to make the world a safer, saner, kinder, happier, more accepting place for our kids.
20. Because, well, you tell me.

Now, go check out Top 20 Reasons Moms Of Kids With Special Needs Rock.

For a printable copy or to request permission to republish, email LoveThatMax@gmail.com.

What kind of thanks would you like on Mother's Day?

Like any mother, my love for my children is unconditional. I do not expect anything in return from them, although I can never get enough smiles, kisses, or the gleeful sounds they make when I walk in the door at night. I would certainly not mind if either one of them learned to cook, especially Fettucine al Salmone. Flowers (such as large bunches of pink peonies) are always lovely.

Just saying.

If Max is someday up to thanking me for my mom-ness, I would want him to appreciate this: That I have mightily tried to do whatever I possibly can to improve his life, whether it's getting him therapies, finding him new gear and equipment or going all out with stuff like a stem cell infusion. I have certainly not done everything, nor do I do everything all of the time. But I do what I can. I hope he will know that. I hope he will like this blog. And also epicurious.com.

I have thanks on the brain because of Mother's Day and a program I'm getting involved in, Procter & Gamble's Proud Sponsor of Moms. A longtime supporter of The Special Olympics (31 years—who knew?), the company is doing moms of Special Olympic athletes proud with a big chunk of change (we're talking B-I-G) that will support local programs and services. They're also a sponsor of Team USA at the Special Olympics, taking place in Athens June 25 till July 4. A couple of weeks ago, P&G asked whether I'd write about The Special Olympics, as part of a paid sponsorship, and I had to restrain myself from screeching "YES!!!!!" into the phone.

Word, for every person who fans the Thank You, Mom Facebook page or leaves a comment, P&G will donate $1 to support the USA's Special Olympics' team journey to Athens—up to $250,000 above their other contribution. Way to support special needs!

Check out this video of Special Olympics athlete Molly and her mom, Kerry (and have a tissue handy).

On Mother's Day, I suspect Max will give me something purple (SURPRISE!), and it will be awesome. I asked Sabrina what she thinks I want for Mother's Day, and she said, "Pickles." That would be fine, too. Sleeping late (my standard request): priceless.

What token of your kids' appreciation will you be happy to get on Sunday? What might you someday like your child to thank you for?