Dear Problem Parents: 3 Ways You Sabotage Your Kids

Dear Problem Parents:

I care deeply about kids. As a volunteer who provides an arts education program to children and adults with special needs, I’ve chosen to invest my life in them. Like other teachers, coaches and volunteers, I do my best to make sure every child gets the attention he or she deserves. I’m taking the liberty of using the collective “we,” because I’m fairly confident that others who work with kids will agree with me. We want you to know about three issues you create for us – and by default, your kids.

By no means is this a blanket statement about all parents, nor is it an indictment of parents who raise legitimate concerns or want to share constructive ideas with us.

No, those of you who are Problem Parents are the ones who raise questions but never offer answers. You’re the ones who fixate on the small things so much that you miss the big picture. You’re the ones who think everything is someone else’s fault.

We understand that you probably don’t realize how your well-intentioned actions are actually detrimental to your child. There aren’t many of you Problem Parents but you can be found everywhere. There are one or two of you in every group of kids, from classrooms to ball teams to cheerleading squads. If you’re reading this and feeling defensive right now, then you’re one of them so … you should probably keep reading.

You’re that mom who complains about the classroom teacher to anyone who will listen …
….. but you never think to ask if there’s anything you could do to help him or her.

You’re that dad who rails at the coach at t-ball games
…
…but you don’t care that the way you act might bother the others on the team and in the stands.

You’re the one who finds fault with everything the scout leader does
…..but you aren’t willing to volunteer for the position yourself.

As summer winds down and you are preparing for the next year of school and extracurricular activities, we thought you should know about how your behavior affects us — and can get in your child’s way.

1. You think yours is the only child who should matter to us.

We know who you are right off the bat, from that first open house or registration … and we tell our co-workers, fellow volunteers or employees about you.

You’re the one who simply must pull us aside the first time we meet so you can tell us about your child, to make sure we understand that your child is different than the rest and to tell us, sometimes directly and sometimes through thinly veiled demands, that you expect us to go out of our way for your kid, even at the expense of other kids.

You have certain expectations of us and how we interact with your child and when we don’t meet those expectations, you are quick to call us on the carpet. Do you know that we wait with dread when class rosters, team assignments and group membership is developed, hoping we don’t get your child on our team or in our troop or in our class? Because word spreads fast about parents like you. Maybe you would be embarrassed if you could be in the teacher’s lounge or the office of the ballpark … if you could hear how many people are saying, “Please don’t put that child in my group … I can’t handle that parent.”

It’s not your child we dread…it’s you.

2. You don’t understand how to tell us what we need to know about your child without also telling us how to do our job.

You know how whenever you want to talk with us we are swamped with paperwork or in a meeting or on a call or heading out the door? Yeah, we’re really not. We just don’t want to talk with you because we know your broken record and we’re tired of listening to it.

Your complaints, your demands, your unsolicited advice on how to run the classroom or the squad or the team … this is what we hear if we give you that quick minute you ask for and we will do anything we can to avoid it. Your negative energy dampens our motivation to cultivate all that is wonderful in your child. It’s you and your treatment of us that is preventing your child from getting what you want – the chance to make the all-star team or get the lead in the play or be featured in that choral concert.

No matter how devoted we are to kids or to our jobs or to our sport or to our art form, you make it impossible for us to see your children as the unique individuals they are because all we see when we look at them is you. If we give your child that break – the one they may need or deserve – it means we will have to interact with you even more and that’s the last thing we want.

Maybe you think we have favorites or teacher’s pets … and we do. They are the children whose parents partner with us. They are the kids whose parents appreciate our efforts, or appropriately tell us how we could improve. Our favorites are the children who may not be the brightest or most talented, but their parents are the ones we all clamor to have on our side.

Our favorites are the children whose parents come to us with legitimate concerns or conflicts or needs that we are happy to meet because they don’t accuse us, they don’t blame us and they don’t irritate the hell out of us by acting like theirs is the only concern that should be important to us. And just to be clear, we quickly recognize those insincere suck-up types. We know which parents think they can curry favor with us by buying us gifts or heaping gushing praise on us and consider them to be Problem Parents too.

3. You don’t realize that we take it personally…because we genuinely care about your child.

When you fixate on that small detail instead of looking at the overall picture, when you complain about things we have no control over, when you blame us for things that just might be your fault – like that email we sent, but you never read – we are truly upset.

We fret, we worry, we drive ourselves crazy trying to find a way to satisfy you … not because we care about you, but because we care about your child. But your persistent negativity eventually wears us down until you finally extinguish our desire to mentor and nurture your child … and we move our attention back to those kids whose parents are our partners, those parents who don’t accuse and point fingers.

We’re telling you this now … because we genuinely care about your child.

We know you want the best for your child. So do we.

Let’s work together to be our best for them.

We All Have Special Needs

I am at a convention called BlogHer. There are 4,000 bloggers here with me. I feel very small and I have so much to learn.

One of this morning’s speakers talked about how connecting with a community of bloggers and with her own readers helped her come to terms with her son’s autism diagnosis. Another keynote speaker, Jenny Lawson – The Bloggess and author of the book Let’s Pretend This Never Happened, spoke about the response she received when she shared with them that she has a mental health diagnosis. Her readers responded with thousands of comments that shared the refrain, “I thought I was alone.” She has emails from people who told her they were on the verge of suicide and read her blog post, and the comments left by the community of people who also have a mental health diagnosis, and decided not to end their lives.

This huge conference has attracted speakers, vendors, panelists and writers of every variety. The event organizers had their pick of keynote speakers, as this conference has brought together women from around the world who blog about an array of subjects.

I wondered, as I listened, if they intentionally chose women who have had experiences with “disability.”

Abbey & me at NRG Dance Project in Atlanta last year

Me & Abbey at NRG Dance Project in Atlanta last year

And then I remembered Abbey’s words to me and realized it wasn’t a coincidence that these two keynote speakers would reference issues that millions of people live with.

Abbey is 14 now but when she was 12, she said the most impactful thing that anyone has ever said to me in my life. Abbey has cerebral palsy and knew about my son, Austin’s, struggle with addiction.

Any time he was away at an alternative school or residential treatment program, she asked for updates on his progress. And so while he was in Atlanta, at what would turn out to be his final treatment program, as he is well into his second year of sobriety, Abbey asked me how he was doing.

I told her that he was doing great and that we thought he might finally be ready for real recovery.

She said:

“I’m so excited!!! I’ve been thinking about Austin a lot lately and thinking about him has made me realize something.”

I listened, and she continued:

“Miss Debra, we all have special needs … and we all have two special needs in common:
We all have the need to be loved, and we all have the need to be accepted.

And then she said, “Some people’s special needs are on the outside, like mine. And some people’s special needs are on the inside, like Austin’s.”

Ashley, Abbey & Austin in 2011

Ashley, Abbey & Austin in 2011

I took such comfort from these words, spoken to me by a 12-year-old girl who will never be able to tie her own shoes or walk without difficulty.

It was not a coincidence that two of this morning’s speakers have been affected by a diagnosis. Because Abbey was right – everyone has special needs of one sort or another. Some people’s are just easier to recognize than others.

I’m going to soak up everything I can from this conference … so I can be a better writer and a better advocate for the people with special needs that I know and love.

More importantly, I hope to learn how to use this blog platform as a springboard for spreading Abbey’s message of acceptance, of tolerance, of recognizing that we are all more alike than we are different.

How We Do Inclusion

Samuel and his camp helpers

Samuel and his camp helpers

 

Camp Merrimack ended on Friday and it was a smashing success. Music with Miss Amie was amazing, yoga was a big hit, the visual art projects were challenging and fun, and of course, Miss Melissa’s dance routines were the bomb. But what really made the week so special was how we do “inclusion.”

Seven years ago, when I started JSAP, I was told that inclusion had to mean that children were integrated together with their typical peers. Our version of inclusion is slightly different from that traditional model. The children in my program have every variety of diagnosis and while they may not be in a class with children their age, they are in class with teenagers who volunteer their time to facilitate the children’s participation in the arts.

The results are dramatic, for both the teenagers and the children. For example, this is a note that one of the teens wrote to the student she assisted:

Note from Madison to Kelsey at the end of Camp Merrimack

Note from Madison to Kelsey at the end of Camp Merrimack

Obviously, Madison Miles, a beautiful 15-year-old girl, benefitted as much, if not more, than Kelsey from their experiences together.

We started out in 2008 with 10 teenagers as volunteers. Today, we have 123 guys and girls who are active volunteers, who want to be included with our students. It may not be what the “experts” mean when they say “inclusion,” but it works!

This 7 minute video is the bomb and it’s how we do inclusion at Merrimack Hall!

 

 

 

 

The Secret about Parents of Kids with Special Needs

 

Alisa and Anna Chilton

Alisa and Anna

I follow a lot of blogs. One of my favorites is Special Needs Mom, by a gifted writer named Suzanne Perryman. She posted an entry on April 14, 2013, that pops back up in newsfeeds occassionally and during the past week, I’ve noticed that several of the moms of students in my program have reposted it. Click here to read the post.

As I re-read this post, I realized that I know a secret about parents of kids with special needs, a secret they won’t tell you because they probably don’t even realize it …

The secret is that parents whose kids have special needs are brave.

What else do you call a person who has faced their worst fear and emerged changed for the better? In the past seven years, I’ve met hundreds of parents and I’ve only encountered one who was bitter, a young mom who’s daughter has cerebral palsy and who told me that her daughter was too disabled … more disabled than any other child and couldn’t possibly be part of my program. The rest of the parents I’ve met are … well, they are just brave. And brave people rarely tout their bravery.

They didn’t start out that way.

They started out on the road to parenthood just like I did … with a vision that did not include hospitals, therapists, resource classrooms. They were a couple with a shared dream of creating that perfect family that we all want. Maybe they imagined their child would be a great athlete or a great artist or a great engineer. While they were expecting, they imagined all those life events their child would experience … playdates, school plays, college, a wedding. For some of them, that imagining came to a halt during pregnancy, for others the end of the dreams didn’t come until later.

But at some point, life said to the parents I know:

“Sorry, you don’t get that dream. You better get busy trying to imagine a different one.”

And so that’s what they did.

 

Connor and Brian Furber

Connor and Brian

 

They’ve taken the disappointment, the fear, the anger that they must have felt and have turned the other cheek. They refuse to let anything negative shape the rest of their lives or cast a shadow on the lives their children will have. They were dealt a blow that must have laid them flat on their backs, but they’ve gotten back up again, put a smile back on their faces and they’ve re-imagined the future without rancor and without regret.

There must be times when the heartbreak returns. Maybe a girlfriend tells them about her daughter, who made the cheerleading squad or maybe their buddy tells them about teaching his son to drive – and there it is … that pain, that regret, that feeling of, “Yeah, that’s what I thought I’d be doing.”

I think bravery is doing something, even when you don’t want to or are afraid and never allowing yourself to become resentful about it. Which is exactly what the parents I know do.

I’ve experienced a miniscule taste of what it might be like. Austin began to lose touch with his classmates around 9th grade and for the rest of his high school years, we were caught up in the drama of drug addiction. A few weeks ago, I ran into the mom of one of his kindergarten classmates and was startled when she told me that her daughter had graduated from college back in May.

“Wait a minute,” I thought to myself. “If Austin hadn’t spent six years using drugs, he’d be graduating from college now?” For a brief time, I let myself think about all that we missed … prom, high school graduation, fraternities and campus visits.

And as I thought about those lost dreams I’d had for Austin, I wondered if I would have turned out like that one parent I met who was bitter that her child had cerebral palsy or if I would have been brave enough to embrace an unexpected and uninvited path.

Once I said to a parent, “I don’t know how you do it,” not realizing that this would be offensive to her. Parenting her child was not some onerous task, some hardship she had to endure … parenting her child was a gift in life.

Was she like that to start with, before she knew her child would have a disability?

Or did having a child with a disability turn her into a resilient and brave woman who could accept that she was going to have to travel a road she never asked to travel?

 

Ben, Carly and Gina Bender

Ben, Carly and Gina

 

Some of the bravest parents I’ve met are ones whose adult children have disabilities … those parents who insisted on bringing their children home from the hospital back in the days when doctors told them not to.

One father told me that when his son was born, in 1960, the doctor said,

“Put him in an institution. You’ll visit him once a week at first, then every six weeks and before you know it, you’ll never even remember you had him.”

Those parents brought their children home when there were no resources, no therapists or early interventions, when their children were not even allowed to go to school. I know so many parents who have retired and still have their children living at home and imagine that they worry every single day about what will happen if their children outlive them. But that doesn’t stop them from fully embracing the path life placed them on, despite what they might have imagined one day so long ago.

All I know to say is … that’s what bravery looks like.

The next time you see a parent of child who has special needs, remember this secret they will never tell you … when you see them in the grocery store or at your school or at your church …

You are in the presence of a person who is truly brave.

And the next time you are disappointed in something or life hands you an unexpected twist, and take inspiration from their bravery.

Having Choices

The Connection field trip to Garden Cove Produce

The Connection field trip to Garden Cove Produce

 

For some reason, people tell me their problems. I avoid eye contact with people beside me on airplanes or in line at the dry cleaners because next thing I know, they are telling me about their awful spouses or their problems with work. I have found myself caught in conversations with complete strangers about the most personal of topics, like the time I was minding my own business at an Alabama football game and a woman proceeded to tell me all about her menstrual cycle, in gory detail. Completely unsolicited …

My friends used to unburden themselves to me like I was Dr. Phil or something. When I was younger, I was an enthusiastic audience for my friends’ complaints and worries, happy to dispense my sage wisdom while telling myself that I must have my shit together or else they wouldn’t be asking for my advice or trusting me with their deepest secrets. Not so much anymore. These days I’m too busy – and so are most of my friends – to engage in the sort of self-involved pity parties and pop psychology that I used to find so interesting.

Every now and then, I’ll end up in a conversation with a friend who wants to tell me about the wretched condition of their life …

“I’m so unhappy in my marriage”
“My business is failing”
“My husband doesn’t understand me”
“I shouldn’t have gotten married to him/her/at all”
“I don’t like the girl my son is dating”

And on and on and on.

I’m never sure if they want me to sympathize with them, offer them solutions or just let them whine. A few years ago, I would have been inclined to listen with empathy and then offer advice that I’d heard on Oprah but these days, I find myself wanting to tell them to shut the hell up and put on their big girl (or big boy) panties.

It seems to me that most of the time when people are dissatisfied with something in their lives, the real problem isn’t what they’re dissatisfied with … the real problem is that they are unwilling to take action or make a tough choice. So you’re not satisfied in your marriage? Then fix it. You don’t like where your career is headed? Then change it. Wish you hadn’t gotten married to him/her/at all? Too late, you did, so find a way to make it work.

Of course, it can be daunting to take the first step towards making changes that need to be made but you have to start somewhere, with some sort of action. I would rather do the wrong thing than do nothing and have a hard time understanding people who would rather wallow in misery than take action or make a choice. And the longer I work with people who have special needs, the more adamant in this opinion I become.

See, those of us who are “typical” have choices. People with special needs, in many cases don’t have choices. People with special needs learn to be happy with what they have because often, they have no other option. Like a woman in our day habilitation program for adults … I’ll call her Margaret (because there’s no one in my program for adults whose name is Margaret).

Margaret is older than me and has an intellectual disability. She has no family to speak of and lives in a group home. Margaret has anxiety over trying new things…new activities, new foods, new people, changes in routine cause her tremendous angst. Margaret doesn’t get to make many choices in her life…she has to roll with the punches life throws her even when she’d rather not. When we added yoga to our daily activities, we had to coax her to give it a try. I watched her fight off the anxiety and force herself to try something that was frightening to her. Margaret powers through things, even when they’re scary or not particularly appealing to her and she doesn’t complain.

 

Connection yoga class

Connection yoga class

 

A couple of weeks ago, we took the adults in The Connection on a field trip to our local farmer’s market. I was afraid Margaret might have a hard time on the trip, worrying about how we would get there or what time we would come back. When we walked into the market, I was standing beside her and when she cried, “Oh!” I thought she was upset. But when I turned to ask her what was wrong, I saw tears in her eyes and a wide smile of genuine pleasure on her face.

“Debra,” she said, “thank you for bringing us here. I haven’t been inside a grocery store in 15 years.”

Wow. Such a simple thing that I take for granted – no, that I complain about – brought Margaret such joy. As I watched her walk through the market, touching all the produce, I thought about all those times that I’ve complained about my problems, or listened to others complain about theirs, and I was ashamed.

 

Cool photo by Katie Stapely

Cool photo by Katie Stapely

 

I gave each adult $5.00 to buy something and was even more ashamed when Margaret asked me if I had enough money to buy sweet potatoes for everyone in her home … ashamed because Margaret was thinking about other people when I so often only think of myself. She started to get anxious about how she would be able to carry all the potatoes home with her, whether they would fit in the van, worried she might forget them but as I calmed her down and told her that we would make sure the potatoes went home with her, she grabbed my arm and said,

“Thank you for making me come today. I didn’t really want to but I’m so glad I did.”

I’ve had so many moments like this in the past six years … moments when I glimpse through the words or actions of people with special needs exactly how the rest of us ought to live.

 

Paul learning about nutrition

Paul learning about nutrition

 

I don’t get this right all the time but I’m trying so hard to remember it … that if there’s something in my life that isn’t working, I should fix it. If there’s something I’m doing wrong, I need to correct it. If there’s someone I’m hurting, I need to stop it. If there’s something I could be doing to make the world better for someone else, I should get busy.

Because I can … because I have choices … because I can complain about things I wish were different or I can choose to do something – anything – to make things different.

 

Starring…my favorite kids with special needs

Video shoot, June 2012

Video shoot, June 2012

This video will make your Monday!

Two summers ago, we were approached by some folks in Hollywood who were interested in making a feature film based on JSAP. The idea is still floating around out there, somewhere in that strange land called LA. Who knows…it could still happen someday. Even if it never materializes, those filmmakers left us with something priceless – a beautiful video intended to give a glimpse into the personalities of some of our students and to show how endearing, funny and fabulous they are. So, let’s go back two years, when Darby was still here, when Connor was a little boy, when Melissa had long hair and when it was Katie’s 18th birthday….

 

You Too Important

Katie and Carolyn have worked at Merrimack Hall for two years. When a business hires a person with special needs, they gain so much more than just an employee. Here are some things that business owners might not know about hiring people with special needs:

  • most people with special needs would be happy with a part-time job, not full-time
  • in some cases, people with special needs can be paid less than minimum wage; in all cases, they would much prefer to have some income rather than no income
  • job coaches are available to help train and supervise people with special needs, if your business is not able to do this
  • organizations like The Phoenix Corporation can come into your business and identify ways you could create meaningful jobs for people with special needs
Katie and Emma

Katie and Emma

There are many intangible benefits to having people with special needs on your payroll, such as the diversity and unique perspective they can bring to the workplace. Here are two examples of how Katie has had a positive impact on me at work:

Katie wears an insulin pump and each day after lunch, she pricks her finger, calls her mother to report the number on her pump and adjusts her insulin dosage. Without fail, once she receives her insulin, Katie goes into the lobby to sing a song. It doesn’t matter what’s going on in the lobby…it probably wouldn’t matter if the building was on fire. Nothing interrupts what we’ve affectionately come to call Katie’s “Sugar Song.” For about 20 minutes, she sings at the top of her lungs about anything and everything, but most often, the Sugar Song is about herself. Her songs have no set rhythm or rhyme and typical lyrics might be:

I so beautiful.
I so happy.
I love my cat.
or
I a princess.
I wear pink.
I the best worker.

Katie and Rachel

Katie and Rachel

I decided to try a Sugar Song for myself a few weeks ago. I was tense, worried about a grant deadline and acting a bit testy. So, I grabbed a Snickers bar from the concession stand and after I ate it, I sang – at the top of my lungs. I don’t know if anyone heard me or not but, like Katie, I decided I didn’t care. My lyrics, sung to the tune of “You Are My Sunshine” were:

I am amazing.
I’m so amazing.
I’ll get this grant cause I’m the best.
My mission is the
Most compelling
My grant will blow away the rest.

And it worked! I felt less anxious when I finished my Sugar Song. And low and behold, last week I got an email notifying me that I had indeed received the grant – a $10,000 grant to establish a leadership development program for our volunteers. Sugar Songs are going to become a regular part of my day from now on.

The second example happened a few months ago. Katie was eating lunch by herself in our kitchen and I was on a frantic search for something – don’t remember what. I darted past the kitchen table about 5 times, going into people’s offices, out the back door and in again, up to the lobby and back. Each time I passed the table, Katie offered me a different greeting.

Hi, Boss Lady!
or
You look cute, Debra!

I responded with appropriate comments but never slowed down until finally, Katie stood up from her chair and said:

Hey! Slow down! 

Of course, I obeyed. Then Katie said:

Why you hurry so much? You think you too important.

Well, that put me in my place. Why was I hurrying? Katie never hurries or rushes and neither should I. When I’m on some self-important mission, I’m not doing anything but stressing myself out – and probably stressing out those around me at the same time. Katie was right…I’m just not that important and neither is anything I have to do that requires me to hurry so much that I can’t stop and engage in a polite conversation with my teammate. Thanks to Katie, I’m going to slow down…and sing a song every now and then.

Katie and Me

Katie and Me

If you’re interested in hiring someone with special needs, I’d love to hear from you! I would be happy to connect you with resources to facilitate the hiring of someone with special needs. I can also recommend any of the dozens of adults in my program who would be thrilled to have a part-time job and who would bring enormous benefit to your business.