Inclusion: From architect to spectator

My daughter Devin has Down syndrome and has been in an inclusive classroom since kindergarten. We have had the good fortune of living in a neighborhood where our elementary school already had the services she needed, a very welcoming and open-minded community and for the most part, pretty wonderful teachers (some were ‘eh, not so much,’ but I had that experience with all of my girls, as I am sure you’ve had with your kids as well). As I think back, I suppose you could describe me as the protector and architect of inclusion for Devin--I volunteered at the school with my oldest to get the lay of the land before Devin began, then I worked with her IEP team on challenging and appropriate goals when she was a student. We had big birthday parties with lots of kids--I got to know their names so we could talk to Devin about them; learning who she liked, who liked her. I took her to private speech therapy sometimes twice a week so she could better communicate with her peers and other adults. We opened our home to every playdate any of my three girls could ask for, and even some they didn’t want. The plan was for all of the kids to get to know Devin, maybe like her and think she was fun, so that one day they’d look out for her too.

Now that Devin is in high school, I’ve had a new introduction to inclusion. One I no longer celebrate or seek for warm fuzzies or validation. Instead I watch with curiosity and emotion, sometimes with wonder and sometimes great difficulty. Oddly enough, it all feels good, because I know it is what Devin wants--arranged by her, not me. I am no longer by her side, but waiting on the periphery as her safety net. When I see her in an uncomfortable situation, and even if she makes eye contact or I motion for her to come over to me, she stays where she is; in the mix with her typical peers. It is a difficult thing to watch, sometimes with a heavy heart and so much pride all at once. I am in awe of her awareness of what she wants and her courage to go after it.  

Some may say, “So what, we all get uncomfortable and have to get through it. Big deal, it’s part of life.” That is true, but here’s the thing, Devin knows she can’t do everything that others can.  She knows because she waits while her peers are doing something harder than her skill level allows. She knows that while they are chatting back and forth easily with these new friends, she is often not certain how to engage when they do talk to her. But most important, she knows she wants to be there. So she sticks it out and learns more every day. She doesn’t take my cue to come and sit with me. She doesn’t give in to flight and leave the room. She doesn’t get angry. Instead, she waits. She waits for the interaction that she is comfortable responding to. She waits for her turn. She waits for the next challenge that lies ahead and continues to go after what she wants.  

Today, she went off to her first day in a large school with the hallways full of kids who are getting taller and taller, and she (inching towards 5 feet) eagerly sought eye contact with a friend, an acquaintance, a teacher, anyone. It was hard for me to stand in the corner, next to the wall, as inconspicuously as possible while she tried to include herself. Some kids stopped to say hello, some smiled at her, but most didn’t even notice her. She was unphased, because she was still looking. My heart was in my throat, and then I realized, those kids, the ones that didn’t notice her, they were also seeking eye contact with their friends, their acquaintances. The fact that they didn’t notice her was something I began to embrace. It meant  that she really is just another freshman in the packed main entrance on the first day of high school, figuring it out just like the other 1500+ students that were swimming the halls, not sure where to go, and not caring. Because the first day isn’t about class or schedules, it’s about seeing your friends. As my heart began to ease, although still racing because come on-it’s still the first day of HIGH SCHOOL- I made sure she made contact with her paraeducator- walked back to the car and silently said,  “We did it.  She is included.”

The hardest part of inclusion is becoming a spectator, and not the architect. Because in my opinion, if done correctly, inclusion is seamless. No fireworks, no shining lights; just lessons learned each and every day for everyone, including me. Exactly as designed, by Devin. I think she is going to have a great year. I am also realistic; I know she is going to have highs and lows, just like her sisters, but I wouldn’t have it any other way. Have a great school year, everyone!

Social Skills & Self Confidence for Kids With Special Needs

This past week, I came across a question on a list serv regarding social skills and her child with special needs who has limited speech but is very social. I think this is something at one time or another we all struggle with, so with her permission, I am sharing a beautiful response from a parent that I know.  It is a bit longer than what I would normally post, but I simply could not cut anything out.  Thank you Jennifer Duran, for allowing us to share your words of wisdom- they are powerful on many levels. 

Question posted:  "What else can I do to 'improve' her social skills while keeping her self esteem and self confidence intact?"

It is a work in progress but what we've worked on is letting our daughter be who she is, and oftentimes it's the rest of the world that has to adjust a little to work her in to their expectations.  We believe this is okay - everyone deserves a little adjustment.  As parents we often think very little of adjusting for the behaviors of typically-developing kids; kids with bad manners because they're a little spoiled or overly-entitled; kids who don't have diagnoses but just come from poor parenting. In fact I think kids like ours are great 'medicine' for these affected typically-developing kids who have not yet developed empathy.  The results may surprise you.

Our daughter is 11 - she does have pretty solid speech but she's very social and a hugger, hanger-on too, sometimes in inappropriate settings. I used to really freak out about this (and still do in certain circumstances - mostly when she's reaching out to total strangers) but I've also learned that this social aspect is just part of her gift; who she is.  So there are a few things I've learned in parenting classes that have helped me -

1)  I try to praise the 'correct' behavior more than point out the incorrect.  For instance, if we're passing a group of 'interesting' boys somewhere and she just gives them 'high fives' as she passes by instead of hanging on them I point out that she did a great job of appropriate contact.  It seems to make her feel good about herself - she's fulfilling her need to reach out to people but in a way that was positively rewarded by me and she received the interaction with the group as well, which is what she wanted.

2)  When something on the edge of inappropriate happens I give it a minute to see what the other person will do - will they hold their boundaries and handle it gracefully?  Will she take the cues from the other person and back off?  Frequently, when I give this minute to my daughter and the other person, it ends pretty uneventfully.  And then I have a chance to praise her for backing off when the other person asked her to.  I call this a success because she learns more from someone else's feedback than from mine.   Of course there are times when I have to intervene, but in many cases she and the other person figure out how to handle it.  This is also great in situations where we'll see the same people time after time.  If folks develop ways to communicate directly with her it becomes a non-issue really quickly.  If they are always relying on me to do it for them, then she is not getting any independence and it's more likely to become a 'thing.'  It also means the other person is not learning any new skills or tolerance.  My daughter is a pioneer in many circumstances in her life (school, swim team, our fitness center) and I truly believe she's there to teach people - 'Yes, you can talk directly to me.  I'm worth knowing and I'm worth the little bit of work it takes to 'get' me.'  I'm so pleasantly shocked at kids (and some adults) I've known for several years now who would avoid her when they first met her or roll their eyes at her different behavior.  They are often her biggest fans now because they've gotten to know her on personal terms - I am often unwilling to just 'handle' my daughter for people if she's not doing anything wrong and just making people uncomfortable.  I am happy to let the discomfort hang as a way to force people to confront it and deal with it.  If it's 'handled' for them they will never be challenged to take this step.  It has taken me years to learn this - that my kid is not an inconvenience to others; she's worthy.  It's not my job to push her out of someone else's path of discomfort.

3) When something is an issue we talk about empowerment.  For instance, she occasionally has an issue with impulse control.  She'll touch or do something she knows is forbidden before she can stop herself.  When she's overly stressed or tired of course, this is more likely to happen - in all of 3rd and 4th grades we had just two incidents of this.  In 5th grade so far this year we've already had 2 incidents - but 5th grade is really challenging and she's tired at the end of the day, which is always when something happens.   One strategy that we employ when she is telling us 'I won't do that again' is to ask her 'What can you do next time instead?'  For instance, if she's grabbing a friend because she wants to talk to them, what else could she do to get their attention that would be okay?    Putting the power in her hands, and challenging her to think about it and come up with an answer herself makes it more likely that she'll remember when the time comes to put her plan into action.  It's her solution!

It's interesting.  I was recently thinking about the line 'failure is not an option.'  You see I work in technology and so this question of failure versus safety is at the forefront of many debates at work.  While the context is a bit different than what was mentioned as “failure not being an option in this piece of parenting”, I'm opining for a minute because it's been on my heart- actually I think failure IS an option.  I think it's an important option because it leads us to take risks that we otherwise wouldn't, which is the only way to get to new innovations and push through boundaries that once looked like impassable barriers.  And as a person who has failed personally and professionally many, many times in life, I believe that failure, even for our kids, is fine. I often tell her teachers and coaches that she thrives on failure - as in, she'll handle her inability to do something much better than quietly observing that she never even got the chance to try - and not feeling entitled to ask why not.  I see this play out time and time again - her self-awareness grows and while there are moments of frustration and pure heartbreak, they are buffered with the sense of accomplishment in just being able to try and see how far she can get.  Not all the 'typical' kids are successful all the time either - and she notices that too. We seem to feel obligated make room for those kids' failures; I believe the world can make room for our kids too :>).  Thankfully when challenged, most of the world responds beautifully! 

Fun Bunch Coaching Strategies Win Every Day

In keeping with the spirit of back-to-school and fresh starts, I want to share a few coaching tips from our Fun Bunch training session.  Fun Bunch provides ongoing guidance for teaching and encouraging our special needs players, a key differentiator in what makes Fun Bunch great!

Two weeks ago, we held a mini Fun Bunch session to introduce some of our newest PPA coaches and volunteers to what a Fun Bunch session is like. Our mini session was designed to prepare them for what to expect from our players and also what we expect from them. 

Here are a few highlights from our training that I think are useful for everyone who works with kids with disabilities: 

1.  Give only meaningful praise. This is a team, not the Suzie or Tommy show.  Use praise and high fives to encourage a player individually and to promote teamwork and sportsmanship.  These players are savvy to what is genuine praise. 

2.  Assume a player can before you assume they cannot.  I watched a buddy tie a player’s shoe. Then I watched him turn red later as he observed that same player assist a teammate by tying her shoe. Don’t underestimate.

3. Expect success, but don’t require perfection.  Take the cue from your player as to how much or how little support they need.  Yes, we are teaching these kids to play soccer; yes, we want them to know the rules and play by them.  That said, this is not a sprint, it is a marathon.  I can name ten players who used to run around the field more than they participated for a few seasons, who are now leading the drills and coaxing teammates to come back to a station!

4.  Don't take it personally.  Sometimes, a player is going to behave in a way or say something that is not what you would expect.  They might not stay with the group and complete the station.  It’s okay.  It does not reflect on you as a helper.  All soccer players have drills they like, and drills they don't. This is not specific to Fun Bunch or kids with disabilities.  Our players often communicate by walking away, and have a pure honesty about what they think, say or do.  

5.  Communicate clearly.  Many of our players are visual learners so they need to see what you are describing. Repeat instructions with your words and your body. (Not necessarily at the same time. )  And make your instructions positive. “Don't kick it too hard” is not as clear as “Kick it gently, like this . . .”  When in doubt choose a directive that tells the player what to do, not what not to do. 

This is not a comprehensive list, but points I believe are important when working with kids with disabilities.  If you give that young person a chance by acknowledging what they have to say and accepting what they bring to the experience, you will learn to make great choices.


Race4Respect™, the experience IS for everyone

It might surprise you to know that there has never been a race or walk dedicated to Down syndrome in the nation's capital until the first Race4Respect™ in 2014, just two years ago (2014).  In Washington D.C., people lace up and log miles in support of all kinds of interests. Perhaps an event like R4R has taken time to appear because its purpose is different. Most runs for a cause raise awareness and money in hopes of finding a cure, or to eradicate something. So what’s different? R4R isn’t seeking to cure or eradicate any part of the people it seeks to support.    

This may sound shocking, but as a parent of a child with Down syndrome, I fear the day there is a so-called "cure for Down syndrome”.  I love my daughter, just as she is.  I would not change her— ever— but I would certainly do something for her, or give her something to improve her life.  Ultimately, I would give her a better world.

The Race4Respect™ is an event that was created with this in mind.  The one thing that we want to give all of our children is opportunity.  For the past three years of R4R, the opportunity provided on Pennsylvania Avenue has been the experience of an event with someone with Down syndrome.  By giving that opportunity to those without Down syndrome, we are in fact giving opportunity to all individuals with Down syndrome.  

They say it takes seven (7) seconds to make a strong first impression.  Now, let's say you happen to see me at the mall and you meet my daughter in passing.  If it takes her longer than the seven seconds to respond to you (which it will), it is very likely that you will assume she doesn't understand.  You would be wrong—her slow reaction time is due to cognitive delay typical of people with Down syndrome— but how would you know?  You couldn't.  Unless you’d had some experience interacting with a person with Down syndrome. 

The opportunity to experience the Race4Respect™ allows the idea of possibility and ability to take hold: the possibility for what someone with Down syndrome is able to do. Just watching the interactions between people with Down syndrome and their families, classmates and teammates, and with friends who have and who do not have Down syndrome, is what captures the interest and enriches the understanding of those who attend R4R.  

I have been told by countless people, our event manager included, that the positive energy at the R4R is like two events combined.  I have no doubt that those who participate in the Race4Respect™ leave with a little something extra.  They will be more inclined to give someone with a disability a chance. A chance to respond, a chance to be able, and a chance to shine.   

The beginning.....

The mission for devenio, inc. is at the core of my heart- collaboration.  I have been on a journey with my daughter, who happens to have Down syndrome, for the past twelve years.  It has been wonderful, exhausting and eye opening.  When you have a child with a disability you are initiated into a group of people who embrace you, take care of you and most importantly accept you sight unseen.  It can all start with a phone call or an email- "WELCOME, what do you need?".  There is nothing more powerful than that acceptance in a time when all is uncertain, and you question so many things about yourself and your life.  As I think back on what has made my journey so powerful, it is the connections and collaboration of people surrounding me.  It has been the key to successful milestones for me as a parent, both personally and also as a tool to support my children and family.  

Collaboration does not need to happen in a conference room or an office.  It happens on the playground, in our living rooms and kitchens, at community events and coffee shops.  When two or more people get together with a common goal in mind to accomplish, they collaborate.  I have found that this has been the most productive and positive way to engage with my friends, colleagues and associates to figure something out.  "How can I get my daughter to use her fork?, How can I get my daughter to enunciate more effectively?, How can I get the school system to modify her classwork? , What is the best way to teach her classmates about her disability?, What programs are available for her after high school?, How can I teach my daughter online safety?  How do I know what we need for a trust for her?".  The list goes on and on, and out of these collaborative conversations come best practices and information that we then share with our other friends, new parents or teachers and/or colleagues.

Devenio, inc. was born of this philosophy.  No one group in the disabilities community can be EVERYTHING to EVERYONE.  That is why many specialize their mission to a key area- advocacy, education, research, etc. yet there are so many gaps that can be filled if we were to work together.  I spent the last seven years as the president of a Down syndrome group and I met so many wonderful people from other organizations (not all in the disabilities community) that had so many fantastic ideas- but resources were always scarce to our group or theirs and it was limiting in what we could do. Devenio, inc. provides the vehicle to accomplish these bigger and needed ideas/programs/events that require one organization to drive the event, program or initiative on behalf of or with multiple groups.   Devenio, inc. launched it's first collaborative effort in 2014 with eight Down syndrome groups to create a race for awareness in Washington, DC and is looking forward to many, many more initiatives with groups from all disability groups to bring our communities together. to register.