Sensitivity Training 101

Ok, I just HAD to vent share.  Tuesday afternoon Lucy’s bus arrived.  Her bus driver is an older man and his assistant is his wife.  I have to guess they are in their late 60’s maybe early 70’s.  Their job (every day) is driving the bus that carries kids with special needs.  They have been doing this for years.. I don’t know how many years.  So, the bus pulls up, they unfasten the straps that hold down Lucy’s chair and Lucy drives her powerwheels to the door and is waiting for the ramp to come down.  The bus driver, let’s call him “Mr. B” is standing outside of the bus and is ready to drop the ramp so Lucy can pull up… the point is Lucy, Mr. B and I are all within 3-4 feet of each other and Mr. B says loudly, “So, what’s Lucy’s problem?”  

My first thought, was “Oh crap, what kind of problem did she have on the bus today?”  I looked at him searching for more info and realized he was actually asking something else.  I think I blinked a couple of times and my head shook – yep, I did a double take and said slowly, “Oh!!  Do you mean, ‘Why is Lucy in a wheelchair?’  and ‘What are the physical issues she lives with? and “Would I mind sharing about Lucy’s disabilities?'”  I looked at Lucy and smiled and winked.

“Yes!” Mr B. answers.

 “Well,” I said, “Lucy has spina bifida and cerebral palsy.”

And in response to that, Mr. B throws his fists down and hollers, “That is TERRIBLE!!!!”

I am pretty sure my eyes widened with horror, because that’s what happened right now as I typed it.  I looked back at Lucy who seemed a little confused.  She may have been asking herself, “IS this THIS terrible?  I had no idea it was terrible!  Am I terrible?”  

I smiled again at Lucy with another, “Let me handle this” wink and I said to Mr. B, “Actually it’s really not terrible, it’s not bad at all.  Lucy is a brilliant little girl and she has a pretty incredible life and her wheelchair  is just how she gets around.”

Mr. B’s wife was standing at the door and it was clear she agreed with Mr. B, with antics like throwing her hands over her face when I said, “spina bifida and cerebral palsy” and letting out big breaths of air like she could hardly believe what she was hearing.

Lucy was being lowered on the ramp, almost touching down to our driveway and Mr. B says, “Well, seems like all that doesn’t really affect her brain.  Her brain works fine doesn’t it?”

“Yes, Lucy has a great brain, she is very smart and understands everything.”  I think he missed my emphasis there.  I think he missed a lot of my re-wording as well.  When Lucy cleared the ramp, I hugged her close and whispered, “Maybe we should get you a t-shirt that says, ‘What’s YOUR problem?'”  Lucy giggled.

As the bus drove away Lucy and I were able to share a moment and have another conversation about how many people just don’t know how to ask what they want to know, without sounding like a knucklehead.

And this is our life, re-wording things that others say in hopes of modeling less-insulting, non-labeling conversations in hopes of maintaining, if not building my little girl’s self-esteem.

No "problem" here

No Problem Here!

I would love to hear your best and worst stories.  Did someone say something unbelievably sweet, rude, insensitive or adorable?  What do you think is the best way to ask these questions?  Even I get all weird and nervous when I want to ask someone why they are in a wheelchair.  Will they be offended and say, “I’m in a wheelchair because I can’t walk!”  

And I hate it when people stare and don’t ask anything.  Lucy is the stare magnet right now, everywhere we go people stare at her.  So, we figured the best way of dealing with it is this- Lucy looks right at them smiles and says, “Hi there!”

This entry was posted in Crazy Little Thing Called Life and tagged , , , by Rachel Coleman. Bookmark the permalink.

About Rachel Coleman

The opinions and late night musings published on this blog are Rachel de Azevedo Coleman's alone, and are not ever intended to represent the opinions and sentiments of any organization or product that Rachel is, was, or will be associated with. Rachel Coleman is the creator and Emmy-nominated host of Signing Time!, the children's American Sign Language vocabulary building series. She is also the creator and host of Baby Signing Time, Rachel & the TreeSchoolers, and Rachel & Me. Rachel now serves as the Executive Director of the American Society for Deaf Children, a 501c3 nonprofit established in 1967 by parents of deaf children. ASDC is the American Sign Language organization for families who are raising deaf children. www.deafchildren.org Motivated by her child, Leah's deafness, Rachel has spent the last 18 years creating ASL products to help bridge the communication barrier between hearing and signing communities. In 2006 Rachel founded the Signing Time Foundation, a 501c3 non-profit dedicated to putting communication in the hands of all children of all abilities. In 2014, the Signing Time Foundation launched a 50-Lesson online ASL curriculum called "Sign It: ASL Made Easy" that is available free-of-charge to families with deaf or hard of hearing children ages 36 months and under. Apply at www.mydeafchild.org. For those who do not qualify to receive Sign It ASL for free, they can find it for purchase at very reasonable rates on www.SignItASL.com. Rachel and her husband, Aaron, live in Salt Lake City Utah. They are parents to Leah who was born profoundly deaf, and is now a senior in college at NTID/RIT in Rochester, NY. They are also parents to Lucy who has spina bifida and cerebral palsy, and recently graduated high school. In 2010 the Colemans were joyfully reunited with Rachel's daughter Laura. Rachel is proud to be Laura's birth mom. Laura was placed for adoption as an infant in 1992 when Rachel was 17 years-old.

32 thoughts on “Sensitivity Training 101

  1. Wow, all those stories make me cringe, but here’s one you’ll never believe…

    I am a college student and the president of our Student Council for Exceptional Children (a job I love). At the “involvement carnival” a few weeks ago, I had a table promoting our group with a fancy poster (made by yours truely) and fliers. The day was horribly hot and really long, coupled with negative looks from people when they read the name of my group. At one point this older (*ahem* mature-aged) woman walked up and read my poster. She got the “aw, that’s great, it takes a special person” look and looked me strait in the eye and said “Well, you must have been one of those special kids when you were younger” (As if I could “grow out” of an exceptionality!!!) I looked at her, horrified, as this was a truely rude comment, the way she said it, the facial expression, everything. I said “well, as a matter of fact, yes, I was, I was gifted, which is also one of the exceptionalities!” To which she muttered “that’s not what I meant” and walked away. Later that evening I was telling my roommates this story and one of them (who, btw, knows all about person-first language and how to properly phrase things) goes “wait, you were gifted?? So, what was your problem?” My other roommate and I got that horrified look again and I responded “problem? My ‘problem’ was that I was SMART!” Apparently “gifted” in different parts of the country have different meanings.

    All of this, I believe, came for a purpose, now I truely know what it feels like to get those horrible questions that even I gave at one point, before I learned better. Tell Lucy she is one special little lady and I love hearing all the stories of how she overcomes this day after day after day. 🙂

    P.S. I learned about Signing Time through a preschool classroom for children with autism–it helped several of our guys talk. I can’t wait until I can afford the DVDs for my own classroom!!!!! 🙂

  2. It continues to amaze me what people will say. I was in an IEP meeting when the school psychologist says, “oh those Down’s kids are so sweet.” And, “that’s so typical of Down’s kids.” I would think if anyone would be sensitive to 1. people first language and 2. not stereotyping, it would be a psychologist! My son is an incredible, spririted person. The fact that he has an extra chromosome does not make him behave a certain way, nor does it mean that you can make generalizations about him.

    One of the best responses I’ve heard to the staring issue is a mom who looks right at the person staring and says, “I was taught that if you’re going to stare, you should say hello.” So, way to go Lucy! I think you both handled the situation with grace and tact. Thank you for sharing your stories with us. Love the new picture of Lucy!

  3. I am like you. I get nervous asking, but there is a very natural (and I believe harmless) curiosity. But it must also be hard to not feel like an animal at the zoo with everybody always being curious. It takes charity and tact on both sides for the conversation to go well and it sounds as though your experience was very one sided.

    Keep smiling Lucy. Those who know you best are the ones to trust to boost your self esteem. You are a beautiful little girl, inside and out. Of course you are a smart girl, just look at your Mom! You seem to be favoring your Dad as your features mature and I think he makes a very pretty girl (but don’t tell him that)! And I like the idea of that Tshirt.

  4. I have shared this one in the past, maybe in the Signing Time Chat, or Forums but not on my blog. Shortly after the 18 week ultrasound, which told us that Lucy would be coming to us with spina bifida and hydrocephalus, I was having lunch with a friend and I told her what we had found out. She looked shocked and said in complete sincerity, “Wow, Leah is deaf and your next baby has spina bifida? (long pause) You and Aaron must have terrible genes!!!”

    Aaron and I laugh about it now, but at the time I could not believe that came out of her mouth. And yes, our friendship sort of drifted off over the years.

  5. I have experienced some comments good and bad about our son. He is now four years old and requires a trach and vent to help him breathe (although right now we are in the process of taking him off of the vent some). He too, always gets stares…which drives me absolutely nuts. He is to the age that he notices and now stares back. When he was younger he would just wave “hi” to everybody. I can’t tell if it bothers him as much as it bothers me, but I try not to let him see how annoyed I am by these actions. I do my best to smile at them, making it well aware that I see their stares which will more then likely catch their attention and they look the other way. He is a very intelligent, kind, happy little guy and when people take a moment to get to know him they see it.

    Lucy has a very awesome advocate. She is very beautiful and has a wonderful smile. Keep showing everyone your wonderful personality Lucy, and maybe you can help teach others the right way to treat people.

    I understand that most people that ask questions have good intentions and when they express there “sorrow” there is “good” behind it. However, I wish that they could understand that these children do have feelings and can think for themselves.

    Amy (mommy to Kaden and Angel Ava)
    www.kadenboeckman.blogspot.com

  6. My son is adopted. He is a blend of three racial backgrounds. When the two of us are together I am often asked “where is he from?” or “where did you get him?” since I am obviously a white chick. To which I reply “Berkley California”. Since my husband is what we refer to as brown, when the three of us are together, people assume that our son is a combination of our genetics (regardless of the fact that his eyes and nose are dead give-aways to two of the three different backgrounds).

    People are just generally curious (or nosy) and have no sense of tact or “person first” in virtually any situation. Perhaps we can all come up with the best wording in hindsight but it’s the on-the-fly deer-in-the-headlights situations that throw us. The least we can do is laugh and educate and laugh some more.

    BTW I think Lucy needs to carry around 8×10 glossy prints and ask if they would like an autographed photo when people are staring – just like the rock star that she is 🙂

  7. I know this is not nearly as shocking as the response from your bus driver but……I was testing a third grade student the other day. I do bilingual evals for special ed. and because I speak Spanish. Most of the kids I test are of Mexican descent. I am from Cuba and have a noticeably different accent. The kids hear the difference and they all find a way to inquire about this. The day before I had been testing a high school student and after she asked where I was from we were able to talk about Cuba, an island south of Florida, communism, etc. With this little third grader, he is Spanish dominant but somehow we had switched to English so he was doing the best he could in English. At one point, out of the clear blue he asks, “What PLANET are you from?”. I burst out laughing and then he knew he hadn’t asked the question correctly, so he re-phrased, “you know, where do you come from?”, “where were you born?” This is comiing from a third grader but it just goes to show you the level of ignorance and how (without judgement) we have to educate. I feel bad for Lucy.

  8. Love the new pic of Lucy. She sure looks a lot like her big sis in that one. I think it’s the nose or the eyes. Or the missing front teeth may remind me of Leah in some of the earlier ST video’s. 🙂

    This is yet another example of why you are the perfect Mom for Leah. I think you handled the situation beautifully. I would have wanted to knock that guy’s block off. I hope you call the school to inform them of the lack of sensitivity of the folks driving the bus.

    Both of my kids are adopted. My son’s play gym teacher asked (for the second time) who he looks as she contemplated that he looks like neither my husband nor I. And (for the second time) we responded that he looks like his birthdad. At only 8 months old, he’s too young to care about these questions and we see them as an opportunity to educate people about open adoption. But my worry is how to answer these questions in a few years. So I’m looking forward to hearing other people’s advice and picked up some pointers from your story. Thanks for sharing!

  9. Gee, you would think in 60 or so years of life folks would develop the “sense” part of sensibilty! All the time this husband/wife team are lucky enough to share with Lucy (and other children), and they don’t even take the time to have an interested conversation? I believe everyone in this world has a perfect spirit, but a body that requires ingenious solutions. It sure would be a shame to miss the “prize” (one’s personality) while waiting to define the “race” (their life). You just might be a privileged witness to something beautiful, as is Lucy’s case.

    In my spare time, I am fortunate to teach swimming lessons to kids/adults who either have an overwhelming fear of the water, or need the confidence to swim without the boundaries of a disability.
    One time, while I was teaching a young girl who has cerebral palsy, the girl’s aunt came out to see her progress. She proceeded to tell her niece that she knew me from graduate school, and was very surprised that a dyslexic swim teacher could teach a girl with cerebral palsy anything. She added, ” I guess they cancel each other out huh?”.
    The girl’s mother got red-faced,apologized profusely, and quickly pulled her sister into the house. I turned to the young girl, wiped away her tears, and struggled to answer when she asked “Why doesn’t my aunt see me like I see me when I look in the mirror”.

    Come to think of it, maybe she and I could use one of Lucy’s “What’s YOUR problem? shirts too. In the meantime, I ‘ll pray that Lucy’s grace and gentleness rubs off on those she meets.

  10. We had only been in our new house a few months when this lady came to check it out. I know her and her family well but don’t have much to do with them…no reason. This lady has a grandson with spina bifida and uses crutches to walk. He is a freshman in college and she has yet to accept his disability. She feels sorry for him and I would guess for herself too. My youngest of 5 boys has Down syndrome and when she came into my home within 2 minutes or less she asked, “So, what’s it like having a disabled?”. Without a pause I told I don’t see Joey as disabled. Yes, he has and will have challenges but I wouldn’t want him any other way. He has taught me more in his short lifetime than I learned in all my years before he was born. I told her he is one of my greatest, if not greatest, gifts from God. She went on to cry and say how bad she feels for her grandson.

    I’ve also been asked one of the #1 questions those with a child with Ds are asked many times…”So what degree of Ds does he have? He seems to have a very mild case. I can hardly tell he has it.” Well, every cell in his body has it but, just like all of our typical kids, we don’t know his learning capabilities until he gets older.

    One more, when I came home from the hospital with newborn Joey and he had just gotten his colostomy I had a number of people, and this one in particular who I have no personal relationship with come to my house (to drop of a gift) and immediately asked to see “IT”. I was shocked and didn’t realize I was even showing her. I really regret that.

    Keep on shining Lucy. You have so much to teach others. LOVE LOVE LOVE the toothless grin. You are adorable. I hope to meet you someday in person.

    And about the t-shirts…I’ve often thought about getting Joey one that says “I have Down syndrome. WHAT do you have?”

  11. I think I am living my life backwards sometimes. I actually feel that children these days are more accepting of people with disabilities than when I was a child. In school we have had children in wheelchairs, children with autism, and a variety of other disabilities. It doesn’t seem to phase most of our students.

    I think adults aren’t as willing to see a child without seeing a disability. My hopes is that in the years to come, it won’t phase someone to see a child with a physical disability.

    As a parent, I always worried what my kids might say if she saw someone with a disability that she had never seen before. One day we were in a store with a man who had a prosthetic arm. She asked the man why he had a metal arm with a hook and he told her a FABULOUS story about how it happened. My daughter said she thought it was pretty neat! She then looked at me and told me she wanted one, too.

    I think it’s natural to want to question, I just think some people lack the capability to do so tactfully.

    You don’t know how much I would love to have Lucy in my classroom! I would love seeing that beautiful smile every morning. Give her a big hug for me! She’s one classy little girl.

  12. “BTW I think Lucy needs to carry around 8×10 glossy prints and ask if they would like an autographed photo when people are staring – just like the rock star that she is :)”

    I personally would love your autograph if ever I met you. You and your family are celebrities around our house.

    Don’t stress too much about the “staring” thing, my boys are “normal” (whatever that means…right?) and we get people staring at us from time to time. You could say that my boys have a lot of energy and run around a lot.

    BTW That’s a really cute picture of you Lucy!

  13. Hey Rachel, Arrrggghhh, they just weren’t thinking. My little boy has a very large head and looks very different from other children so we get the stares too. Although I do think that we all do get stares sometimes like kristib said. Here’s a blog post I wrote about children staring at my son who was 2 at that time and now 3: allaccesspasstojack.blogspot.com/2007/07/what-to-say.html. My husband constantly reminds me that that particular generation experienced things so differently than we do today. My own grandmother who loves Jack with all her heart is having a very difficult time with the fact that he still expresses himself with sign more than speech. At first, she did not believe that he would learn to sign at all and then she bragged about how smart he was with his signing and now that he’s three …..I was very excited the other day. We were watching Zoo Train and I said, “Oh I know you can sign monkey because you’re a monkey!” Jack very deliberately shook his head, No and signed “Mommy”. I was so excited that he made a joke! I called my grandmother and told her Jack called me a monkey and all she wanted to know was “Did he say it or did he sign it?” When I said he signed it, she said “Oh well, that’s cute, I guess” Heart breaking….even worse, I was thrilled to see that Jack’s preschool teacher is so well versed in signing that she recognizes the way Jack signs. [Because Jack was born with fused fingers, he does not have knuckles so his fingers bend from his hand but not in the middle so his signs are adapted to what his fingers can do in addition to the way children naturally adapt signs until they learn to do them correctly] I called my grandmother all excited that I did not have to worry too much about a communication problem and she said “Oh, so she reads signs? Then Jack is not really in a regular class, is he?” Waaaaaaahhhh! My Jack is amazing and my Nana is missing out because she won’t communicate with him where he is right now.

  14. I am realizing that people just say insensive things.

    Here are some other situations/iexamples:

    When we struggled with infertility:”is it you or him?”

    Another example: Oh they died in a car accident. What was it that killed her?

    Miscarriage: “It was ment to be.”

    Can you really believe it??

  15. We adopted our sons, each from birth. When I became pregnant, surprisingly, people would often say “you are going to finally have one of your own”. If that wasn’t bad enough they would say it in front of my babies. I would say “I thought I already had two of my own.”

    When Lydia was three months she was diagnosed with a high risk leukemia. From her treatment of chemo, brain surgeries (she developed hydrocephalus from the chemo), and bone marrow transplant she is now cancer free. She is left with many scars, developmental delays, and (for now) a feeding tube. I often hear “looks like she has been in a war” and I will reply that she has.

    She just turned 1 year old. I am just at the beginning of learning how to protect my children from uneducated people.

    I, too, was uneducated about differences, before it became my life. I am trying to educate and defend. I was just introduced to Signing Times (within 6 months). It does exactly that!

    Liz
    littleleaps.wordpress.com/

  16. When my daughter was about 6 months old, we use to have her connected to oxygen and a feeding pump. It amazed me how adults would stare! Of course it also made me very mad. Kids I can understand, they have yet to learn so many things. I do expect if the parents are around that they should redirect them as to how to be appropriate.
    Back then I use to stare people down. Their rudeness truly upset me. People don’t stare so much anymore unless they spot her heart surgery scar.
    We still have frequent appointments to different specialists. During one appointment, I had my 2 older kids with me (4 & 6). I realized I had never talked to them about staring @ kids who used heelchairs, vents….or anybody for that matter. So we immediately took a family potty break (I was worried what might come out of there mouths).
    We talked about EVERYONE having feelings, and that nobody likes to be stared at. And that while some of us may look a little different, we ALL deserve to be treated with respect and kindness. Using their sister as an example really put things into perspective for them as they are very protective of her.
    I agree, sometimes I want to ask others about their kids, and I’m not sure how to phrase it without offending them!

    Like I’ve said before Rachel, you are an inspiration!
    Ana

    www.AngelHeart2.blogspot.com

  17. We get questioned a lot because we have six children. These are all children we love and adore, none of them are accidents, they are all special gifts from God. When we go out people are always asking us, “Are they all yours? Don’t you know what causes that?” Do they really want the answer? Do I dare say, “Yes, I do know, and I enjoy it very much!” LOL

  18. Ironically for us, the worst comments we have received have been from the medical community. Here are a few highlights…

    “There’s no reason for a child like this to be born in this day and age.” The concluding remark of the doctor after telling us our youngest child would most likely be born with Down syndrome, a heart condition and other issues.

    “God didn’t make this baby to survive, so by seeking medical treatment, you are actually going against God’s wishes. She most likely has DS, she will be 2 months premature, so she will most likely have CP, odds are she’s already suffered brain damage. On top of all that, she will have to face surgery on the first day of life. Let her die peacefully without pain. Think about it over the weekend and let me know…” New doctor, same attitude when at week 30, she began to show signs of stress.

    “The good news is that you can always institutionalize her. Keep her while she’s young and cute and then, when she gets to be too much, declare her a ward of the state and institutionalize her. You have other normal children to consider. It’s not fair to them that all your resources will go to this child. How will you pay for college for them?” The advice of a social worker when she was a few days old. I never did find out what the BAD news was.

    Fast forward—at age 3 (as someone wise beyond her years said) our daughter Shines. She’s in a DS literacy program and reads our family names. She is loved dearly by big brother and sister. She knows about 200 signs, can say and sign the alphabet. Despite our DENTIST telling us to stop signing because it would delay her speech, she speaks really well and is starting to form sentences. She’s even a calendar girl for the organization that created the literacy program. She’s the little girl in the black and white pictures.
    www.shop.gigisplayhouse.com/main.sc

    Obviously we also found doctors who have supported us—for that, we will always be grateful. Sadly, they were the exception not the rule in our case. Judging from our experience, it truly is no wonder that 90% of children prenatally diagnosed with DS are aborted.

  19. I’m so in awe that I came across your blog! My kids and I LOVE signing time and you guys are all stars in our household. I have 5 year old twins (Kelsey & Ethan) and a 2 year old (Cannon) with Down syndrome. We watch signing time every morning before going to school. Cannon goes to a school here in Fort Worth, Texas that is part of Texas Christian University (TCU). The school is called KinderFrogs and is for kids with Down syndrome and other developmental delays. The kids start there at 18 months and can go until 6. They watch a signing time every Friday and use signing all day long with the kiddos. In fact, at fundraiser last year, someone donated a library of signing time videos and it was a hot item.

    Anyway, I wanted to let you know in response to your post, that you handled that situation with such grace and poise! I have often wondered how to handle insensitive inquiries such as what you experienced, and now I have a bit of an idea. I am very sensitive by nature and have not yet developed my “thick skin”. Cannon is still in the “aw, isn’t he cute” stage but I know all too well that people will feel more threatened by his differentness the older he gets. Like Lucy, I hope he has a sense of humor about those that don’t understand what makes him extra special.

    On a complete side note, I think my 5 year old Ethan has a crush on Lucy. Ever since they saw the show that included information on your family and he figured out who Lucy was, he points her out every time he sees her during a show. It is so cute to hear him yell out “There’s Lucy!” followed by an “I like her”. Hee Hee.

    Take care and thanks for making learning sign language fun!

    Lisa Sharp
    Mom to Kelsey (5), Ethan (5), and Cannon (2, DS)

  20. When my Joey was smaller, his autism was a little more pronounced in public, and we’d get all sorts of odd comments and suggestions, ranging from corporal punishment recommendations to “cure” recommendations to my favorite, “Um… does he always do that?”

    When I was four, my family went to the Springfield Mall in suburban DC, and there was a multiracial couple with a baby. The mother was Asian, the father African-American. I, in my lovely four-year-old full-volume voice asked my mom, in the middle of the mall, “Is that baby black or Chinese or what?”

    My mother was horrified.

    Whenever we get a stupid or thoughtless comment from someone, I remember that story, and think about the ignorance and innocence behind it. People who don’t deal with special needs on a near-and-dear basis just have no clue. This isn’t part of their world. It’s another universe of experience they have never touched. Despite any intentions or influences to the contrary, most people just don’t learn how to deal with differences. They have to be taught about this new thing, just as I have to teach Joey to talk.

    So I think what you are doing is a perfect way to cope with the ignorance of others. Stare right back and introduce yourself. Provide the language models that are appropriate (a great idea, since not everyone subscribes to the same language models- the language issues and identity politics of language are a tangled web of semantics, beliefs, and experiences- providing models of language you find appropriate lets people know what language and philosophies you prefer!). Take it straight-on, because this is reality. The more people understand that differences are not tragedies, the better the world will be.

  21. I wish I knew what to say! You have a strong and beautiful daughter. Hopefully as she grows through life people won’t focus on her disabilities. And hopefully people who wonder about her will have the tact to ask politely! I don’t have a story to share about being treated differently for a special need. But if you ever want to hear a good tantrum story- I’m your mom!

  22. loveforallkids: Thanks for bringing up one of the horrors of my youth. I will have to share in a future post about “The Highly Gifted Program” we had at my elementary school. I was forever scarred!

    jennsk: I am curious, did you gently remind them that is more appropriate to say “A child who has Down syndrome?” I would imagine they would take that coaching well.

    Matilda: Aaron read your comment and thought it was sweet. He was not offended.

    amyb: I wonder if rather than putting our special kids on the spot it would be best if we parents just took the bull by the horns. We could be the ice breaker with, “Hi there! I noticed you were staring, did you have a question?” LOL Well that one came out sort of rude… Maybe leave out the “staring” part?

    brookelmt: A very cool white chick, you are! I am weighing out the pros and cons of having Lucy carry around glossy 8X10’s.

    grojas: I think you have unknowingly found THE answer!! It is the question to ask all stare-ers. “What planet are you from?” Gloria, everyone who reads my blog and bumps into me, comments on THIS comment that you left. What Planet Are You From? That might be worth making into t-shirts. What do you think?

    simply_lori: Here is some advice, blog about it! You will get all kinds of good advice and guess what else we got? Lucy’s principal reads my blog and they came in to measure her for an accessible water fountain last week!!! How cool is that?

    Ella: Or… maybe… by the time you are 60 you no longer worry about common courtesy! Maybe we all have THAT to look forward to!

    rachel: Wow, that is brilliant! (Oh, that’s me)

    Joeysmom: Reminds me of another story. Shortly after Lucy’s birth, I heard someone giving a talk in church about “this man who was confined to a wheelchair!” As I thought about the words which were being used to show true hardship, I got the giggles. I couldn’t stop! I knew we would be getting a wheelchair for Lucy and in my mind a wheelchair is NOT confining. You want confinement? DON’T give the man a wheelchair! A wheelchair is freedom in Lucy’s world!

  23. cathybarra: I think Lucy would LOVE the idea of being in your class too.

    kristib: any one of us would happily give you an autograph!

    JacksMommy: Well you could say, “He SAID it with signs.” Most of you know about my “soap box” – SPEECH is a SKILL it is not a language! IF you haven;t heard it, search the ST1 Forums for “speech skill language” I am sure I have gone off there about it. Maybe even here on my blog… it might be time to revisit it.

    total_girls: “Is it you or him?” I think you smile and say “It’s a combination.”

    leapnlizzie: If you educate, you may be able to skip the defending 😉

    mami.adame: I’m an inspiration? You held a family sensitivity briefing in a bathroom! I love it!

    mykkamoose: I grew up in a family of 9 so I can relate from the kids side. Of course there was that phase where I was horrified my parents had “done THAT NINE times!! Yuck!” I dare you to say it, just one time, say “Yes I do and I enjoy it very much!” PLEASE say it and report back!

    dianec: “The good news is that you can always institutionalize her.”
    That is the good news? I am scared to hear the bad news!

    lisajayer: You never have to develop a thick skin. Maybe that’s the good news? Tell Ethan that Lucy says, “Hi!”

    Joeymom: I think most 4 year-olds might ask the same thing you did. And it is possible that no one can keep those 4 year-olds from saying it.

    SallyAnn: Sounds good I will create a tantrum post just for you:)

    Alisha: Thanks! I try to keep it light and playful, rather than making the comments wrong and significant

  24. Hi! I just wandered over from BPD and can’t begin to tell how helpful this post has been to me. My niece has Downs. I take her places with my kids as she and my youngest are the same age and tend to learn from each other. Like when Ally (niece) taught Jilly (daughter) some signs she had learned- Jilly returned the favor by teaching her to climb over the baby gate across the kitchen doorway. Ally showed Jilly how to work some of her toys from therapy….Jilly showed Ally how to open the front door and “butt slide” down the porch stairs to freedom. My sister could be happier about it I guess but it works for them. However lately my sister has refused to go out in public with us. Not the girls…just me. Because I am UBER protective and have a wicked temper and zero control of my mouth. I just can’t tolerate idiots and don’t see why I should. Like the cow at the mall playground who pulled her son away from my niece and proceeded to sanitize him while she brayed,”Whats wrong with her?” at me. My response,”Not much compared to whats wrong with you.” My sister almost crawled under the bench. Or the obviously teenage girl who was mid pregnancy who asked me what I did while I was pregnant to cause that (and pointed to Ally) to happen. She didn’t want to do it too…I will not repeat my response as Hubby threatened to wash my mouth out with soap if he ever heard me say something like that again. I have no problem with reasonable questions or curiosity..even if it’s the bumbling kind….I didn’t know squat about it when she was born. Never had reason to. So ask away if you want to know. But for the love of God just use common sense. And a little courtesy wouldn’t hurt. I know cause I tried it once. The only thing it did was prove Ally is not only smarter than me, she is much more tolerent of morons. I was at the park with Hubby and the girls playing when a horrible woman in yellow spandex pants that made her butt look like a bus informed me that Ally should be in a institution as it was not fair to normal children to have to deal her. My response of “Lady you are so full of..” was cut short when Hubby’s hand came down on my shoulder. I was surrounded by kids…they were all listening. So I took a deep breath and took the high road. I also glanced down at Ally who looked up with a huge smile and proceeded to sign- what I found out later was- “poop”. I learn from her everyday that we are blessed to spend together.

  25. Cindy and Co.: I am glad you found us. Does your sister know about Signing Time? We always include children who have Down syndrome in our shows, we also include children who are deaf, with or without hearing aids or with cochlear implants, we have had kids who have trachs, cleft lip repairs, spina bifida, cerebral palsy, autism.. the list goes on and on. Having been on public TV for 3 years, I LOVE knowing that I am helping bring these Signing Time faces into homes. We are providing parents an opportunity to discuss “differences” with their kids. And hopefully some of the differences feel less different when you are exposed to them. I love that generations of children are growing up identifying and learning from their “deaf friend, Leah.” This may be one of the things I am most proud of.

    I received an email from a woman who said that her daughter had stood up to some kids making fun of the one little girl at her school who is in a wheelchair. The daughter scolded the kids saying, “Hey my friend Lucy is in a wheelchair! Just because a kid can’t walk doesn’t mean they can’t do other things and it does NOT mean that they are dumb!”

    That little girl had never even met Lucy, other than on TV through Signing Time. If THAT is the mark I leave on the world… I am completely happy!

  26. I have not been able to find Signing Time here. I looked and searched but I’m in GA and we aren’t really up with the times here in the sticks. I caught on BPD that you have DVD’s though so that is my next search. Lord knows it’s the only way I’ll keep up with Ally….lol. I also like the ASL website cause they have videos of the signs and it really helps me. But I still have a hard time figuering out what she’s saying. She knows more signs than I do and her English is kinda sketchy. Most of the “needs” words and phrases she speaks are in Spanish (her father is from Peru). So we do alot of pointing at things when I hit the end of my usefulness. But I really feel I need to be able to talk to Ally with out having to call my sister to translate……I mean how sad am I? I have three decades on the kid and she is reasonably fluent in three languages.

    Ohh I just found the shop at Signing Time link…..bye!

  27. I would just like to say what a LIFESAVER you and Alex and Leah are for my son. He is 2 1/2, has Down Syndrome and is deaf. On Sept 12, we consented to a Cochlear Implant. On Sept 30, we “turned on” his new ears!! I must say; this was the greatest thing that we could have possibly done for him. He is happy, smiles, and laughs now, more than ever.

    One thing that I am MOST shocked about though, is a response that I got on our way to the parking garage of Nationwide Children’s Hospital. Elijah had his harness on, with his battery pack. He was all “hooked” up, and I thought he looked adorable. A man got on the elevator, along with 4-5 others, and he said…..”WHY do you have that on him, he looks RETARDED!!” WHAT?!?!?!??!?!?!? Did you just say that my kid looked retarded?!?!!??!?! That is something that I can NOT put up with. To top it off, I am a 5 1/2 month pregnant emotional wreck, and I just turned around with him, laid his head on my shoulder, and sobbed to myself. HOW cruel.

    Needless to say, this is not the first (or probably last) mean comment I’ll deal with. I’m just glad that he can’t understand what someone calling him retarded means yet. And I hope, and pray, every night that he never has to.

  28. I know I am a little late on this one. Call it being sick or lazy, whatever. But I read it the day you posted it.

    The day Rhett was born I knew he had Ds. The second I laid eyes on his perfect little body I knew. Andy of course was oblivious. He was in that I’m a dad again euphoria, and I wasn’t going to tell him. Throughout the night our little 4 lb miracle had more and more breathing issues. They transferred him to the NICU.

    I called Andy that morning and let him know that things were heading south and he might want to come back to the hospital. He went up to the NICU before he came to my room and he was giddy as can be. He said Rhett’s breathing was doing much better, they were taking his blood out little by little, adding saline solution to thin it out, and putting it back in……then they had sent of a chromosome test.

    I asked him if he knew what they were checking for. No, of course he didn’t. I told him that I thought our little boy who lay just a floor above us, already fighting to be here on this earth, had Down syndrome. Andy sat in the chair for about 5 min and said nothing. Then he got up, kissed me, and went back upstairs to the NICU.

    It took about a week for the karyotype to come back. Of course we went through the “Oh look at him, he hardly has any of the characteristics, no line on his hands, his ears are not small and lying low on his head, yes, his bridge of his nose was a little flat, but he looked just like Hunter, didn’t he?”

    Denial I guess.

    Then we got the results back. The resident told me first, while Andy was at work. I told her that she would need to tell Andy when he came in for the night. I just couldn’t do it. So I left to go pump, and told the resident on my way out that Andy was alone holding Rhett.

    I came back about 20 min later and the curtains were drawn. It was just Andy and Rhett sitting in the rocking chair. Andy had a tear streaked face, and Rhett’s fuzzy head was wet from Andy’s tears.

    Andy looked up at me and said, “Pam, I am fine with the diagnosis, but I’m not going to be able to handle it if someone makes fun of him or calls him retarded, I love this little guy so much, and I will never allow anyone to hurt him.”

    My point is, that we always want to protect our kids, but sometimes life just throws these things at us when we are least expecting them. Andy wants to do anything he can to protect Rhett. You’ve seen how big Andy is, not too many people say too much about Rhett’s condition when he is around.

    However I have had some very mean and hurtful things said to me about Rhett. Of course we get the “Oh how AWFUL that you have a child with a disability” all the time, from people who don’t “get it.” There’s always the classic, “Well how are you going to cure him?” My answer is simple.

    Rhett is the most amazing thing to happen to our family. He has taught us strength, love, peace, endurance, humility, laughter, and above all that everyone on this earth is special. When I explain it this way, people just look at me and say, well he came to a wonderful family then.

    But there are the times that I have had encounters in the store with Rhett, where kids have said things about him….like when he had his feeding tube and oxygen, they wanted to know what is WRONG with that baby!! I love to explain things to them, “Oh he just needs a little extra help eating, or his tube helps him breathe better, he was born with a broken heart, but it’s getting all better now.”

    Sometimes the parents won’t let me explain. They just push their kids away, and duck their heads so not to make eye contact. Then there are the groups of teenagers that are just mean to us, and tell us that Rhett should be in an institution…….(that one I totally just ran out of the store bawling…grocery cart left behind and everything.)

    It’s hard, because every situation calls for a different explanation, because everyone is different, and you try to explain it as best as you can without coming off like a hormonal b****. (at least I do, geez it’s my kid, give me a break!!) 😉

    The bus driver does need a lesson though. I worked as a tech last year for the special needs kids in our school district, till we found out that me working was putting us over the limit for medicaid, which we so desperately needed. One thing we were taught was to be very sensitive to the parents, and to treat each child as if they are the most special child on the bus.

    I loved the kids I worked with, and miss my job alot. I wish I was Lucy’s tech….her and I could have some fun times on that bus.

    I think you handled the situation very well, and Lucy and Leah are both super lucky to have you as a mom.

    Sorry if this came off as a bunch of ramblings…..it’s 1:30 am and I just took my cough syrup with codeine……I am going to bed now before I fall over. 🙂

    ((HUGS!!))

  29. I’m very impressed, I don’t know if I could have done as well…

    My daughter Sarah has been diagnosed with PDD-NOS, I get a lot of interesting reactions depending on who you talk to. If it’s my MIL, it’s OH THAT’S so TYPICAL… or suggestions for how to handle her (which can go on for an hour)… I love who my daughter is, but typical she is NOT. I think typical is overrated in a lot of ways.

    Another story that kills me still… prior to being diagnosed, when we were still in the land of just “global developmental delays”.. we had a family member over and shared what was going on… without really understanding herself. Well she then felt the need to broadcast that something was “wrong” with Sarah to every family member within a 50 mile radius like she was defective and this was NEWS rather than this being her LIFE….

    Needless to say, we haven’t spoken much since.

    I also wanted to tell you… Sarah, though she only has a few signs, and her teachers/therapists use many forms of communication with her LOVES your DVDs.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.