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.

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.

Not So “Typical” Teens

One of the first things I learned back in 2008 when I first became involved with people who have special needs was that we should refer to people with disabilities as people first – like people with special needs, not special needs people – and that those of us who don’t have disabilities should be referred to as “typical.” After spending seven  years working with our teenage volunteers, I can tell you that there’s nothing typical about any of them.

When I first got the idea to try teaching dance to kids with special needs, I knew that the normal teacher/pupil ratio wouldn’t work. I didn’t want to limit my program to one type of disability; I wanted any child who wanted to participate in the arts to join. But that meant being prepared for children with a wide variety of challenges – verbal, physical, social – and in the beginning, we only had two teachers…Hayley Henderson and me. Even though I limited class size to 10 students, I knew that with an age range of 3-12 and with disabilities like Down syndrome, autism spectrum disorders, cerebral palsy, mitochondrial disease, spina bifida and others, we were gonna need some help.

Hayley turned to the kids in the Huntsville High School Show Choir, led by her mother and Choral Department Director Sherry Smith, for help. She rounded up 9 kids – and I threw in Austin to get us up to an even 10 – and we had our first crop of typical students to serve as program volunteers. I had no idea back then that relationships between students, volunteers and the families of both would form outside the walls of Merrimack Hall. Once they’ve graduated, our volunteers return to visit us on school breaks, take their former students out for lunch and visit them each time they’re home from college. Our program is proof that both sides benefit when we are all integrated together.

I’m amazed…and grateful…when, year after year, teenagers come to us from all over North Alabama. These typical teens are already exceptional – all of them are high-achieving, budding philanthropists with too many talents to list – and the friendships they share with our students are, well, they’re pretty special.

We honored 9 seniors at our Spring Recital – 5 typical kids and 4 kids with special needs. In the first half of this short video, the volunteers say, in their own words, what our students have meant to them; the second half is me, talking about our students. For anyone who wonders how “typical” kids could benefit from having kids with special needs in their classrooms, and in their lives, this video says it all.

Luckily, we will still have our Project UP seniors with us next year but our volunteers will be off to college – every one of them having received prestigious scholarships. Halle Ragan, Emily Dean, Peyton Davis, John Chilton and Bailey Kinnard, we will miss you so much! These typical teens, and the 50 who have already graduated, took our first little dance class and have turned it into something I never could have imagined. Anytime I try to thank any of them for their service, they tell me that they’re the ones who should be thanking us…for lessons learned, for joy received and for the privilege of friendship with kids who have special needs.

 

 

 

The State of Special Education, Part 3

empty-classroom

 

 

Your comments, your stories, your fears and worries are flooding my inbox…and what I am reading is making me angry. What I am consistently hearing is:

  1. I’m afraid to speak openly about the issues I’m having with my child’s education.
  2. The Huntsville City School administration and board either don’t have policies in place or they don’t enforce those policies with any consistency.
  3. My child’s civil rights are being violated but I’m powerless to do anything about this.

Saying that a child’s civil rights are being violated is serious business. Unfortunately, it’s what I’m hearing over and over. In less than 24 hours, I received 203 messages from you…113 of the messages came from people who reported that they were either parents or teachers…and what resonated in each of them was that we are not treating children with special needs fairly in our school system.

Wikipedia says:

“Civil rights are a class of rights that protect individuals’ freedom from infringement by governments and private organizations, and ensure one’s ability to participate in the civil and political life of the state without discrimination or repression. Civil rights include protection from discrimination on grounds such as race, gender, national origin, color, sexual orientation, ethnicity, religion or disability.”

When I compare this definition with the stories I’m hearing, it sure sounds like the Huntsville City School administrators and school board have created a system that is violating the civil rights of the 2,800 children who attend our schools. Many of the messages I received asked me for a “Call to Action” or a “Next Step” but I’m not quite there yet. I’m going to share some of the stories I’ve been hearing with you and hope that your feedback will help me formulate that action item that we can all rally around.

 

book-stack

 

I promised to protect the identity of anyone who left me a comment or sent me a message. It is interesting to me that 112 of the 113 parents and teachers who contacted me asked that I not identify them. What do people fear? Reprisals against their vulnerable children or push back from the school administration or further cuts to special education are on the top of the list.

Please read the comments that were posted directly on this blog. Here are some of the ones I received privately…send me your comments so we can figure out what a “Next Step” would look like.

Reader 1: “I’ve kept quiet as long because I’m a teacher in the Huntsville City Schools and honestly, I’m afraid of our superintendent. Other teachers I know feel the same way. We lost so many experienced and gifted teachers since he came here because they would rather give up their jobs than work for a man who shows such callous disregard for what’s best for our students. People are only focusing on the success he’s had with the budget but at whose expense? The children…especially the kids in special education. HCS is violating the rights of kids with special needs and parents have no option but to go along with it. I think a class action suit is the solution.”

Reader 2: “My child’s aide confided to me that she was told by the school that she was not to communicate anything with me…at all. She was not to tell me what happened in my child’s day, what my child ate for lunch, what my child did in OT or PT, how my child performed academically…she was not to tell me anything at all about what my child did in school. Of course, the aide continues to report what my child does each day.”

Reader 3: “Pulling children with special needs out of every school to house them in only two or three schools is illegal. First, it’s a shame because ‘typical’ students who are exposed to children with special needs learn great life lessons early on that help society later in life. The benefits of children learning and working together side by side as ‘typical’ students and ‘special education’ students is unilaterally beneficial. More importantly, however, segregating the special education population from peers is illegal. You cannot round up all the Muslims and put them in one of 2 or 3 schools. You cannot round up all the students who are on the free school breakfast and lunch programs and put them all into only 2 or 3 schools. The law does not allow rounding up any minority and placing them all into 2 or 3 schools only. Segregating special education students this way is federally prohibited.”

Reader 4: “My child’s school has been without an OT for most of the school year. The OT left and wasn’t replaced. When I ask about a replacement, I’m told that one will be hired as soon as the money is available and that it will be my responsibility to make up the OT sessions on my own, even though our IEP mandates OT as part of my child’s academic day.”

Reader 5: “My child was born in Huntsville and went to school in the city system through third grade until we were transferred last year to another state. I didn’t know there was another way to educate my child but he is now in a regular classroom with his typical peers and is thriving. In Huntsville, he was put in the resource classroom and I didn’t know I had any other options.”

Reader 6: “My child was put into the resource classroom for kindergarten. I asked why and they said it was because his IQ was lower than 59. He was never given an IQ test so I don’t know how they know what his IQ is but since he has Down syndrome, I didn’t question them.”

Reader 7: “I’ve sued the system and was able to get my child in our neighborhood school. The terms of our settlement prevent me from speaking about it so I can’t share information with other parents on how to get what they deserve. The school’s administration likes for us to sue them because then we can’t talk, they only have to redress a problem with one family and can go about business as usual. I guess other parents either don’t know their rights, don’t know they can sue or afraid to but it’s the only thing that works. It keeps everyone in the dark and keeps one family satisfied. Once we get what our child needs, we are afraid to tell other families because then they might take away our services next year and make us sue them all over again. It is exhausting.”

 

Please continue to share your experiences with me.  You can reach me at info@dreamingwithyourfeet.com.  I promise to protect your anonymity.