#15in2015 Calling out Disney, Carter's, Children's Place, and Target to Change the Face of Beauty

Dear Disney, Carter's, Children's Place and Target,
After my daughter, Kamdyn, was born I was flipping through an old National Geographic magazine when I happened upon this article:



I was so excited to see that article.

The next time I saw someone with Down syndrome in a magazine it was this Pampers ad:


Again, I was so excited.  Kamdyn wasn't much younger than the baby in this ad at the time.  I even hung these 2 pages on the door of her closet for a while.

Seeing these made me feel like Down syndrome, differences, and Kamdyn could be celebrated in the world.  People have this preconceived notion that disability isn't "normal".  But look around.  Disability is a normal part of life.  Look around to the millions of people that are disabled and supporting your brands and your products.


I think it's time, Disney, that you represented someone like Kamdyn who is a die-hard Disney, Frozen-obsessed little girl.



And it's time for you too, Carter's and Children's Place, to represent children with disabilities.

And Target, a child in your ad started this whole #15in2015 movement.  Keep doing what you are doing.  But will you, Target, also publicly commit to using more people with disabilities in 2015?

Kamdyn says, #IMREADY to see 15 companies commit to using people of all abilities in their advertisements in 2015.  Let's #changethefaceofbeauty.



In this picture, Kamdyn is wearing a Children's Place dress, leggings from Target, and Carter's shoes.

Review of Small Talk by Amy Julia Becker

I recently finished reading Amy Julia Becker's book small talk.  Overall, I enjoyed the book, and I took many positive lessons and encouraging words away from it.



Small Talk revolves around Amy Julia's experiences as a mom and how they relate to her faith, as well as lessons she has learned.  Often times while she is trying to teach her children a lesson, she finds herself learning something just as valuable.  There were some topics that we don't personally agree on, as far as faith and beliefs go.   But in her quest for knowledge and truth, I felt compelled to examine my own life and faith, and I ultimately came away more strengthened in my own faith.

 
The above quote is one of my many favorites from small talk.


From the beginning of the book, I appreciated Amy Julia sharing candid moments between her and her children.  She shared the hard moments in parenting along with the good.  In opening the book, she tells about a day where she lost her temper and ends up apologizing to her kids.  As a mom, I appreciate that she was real in sharing that moment.

My favorite chapter in the book is labeled "disability". She addresses the issue of how to talk to your children about disability and how her own feelings about disability have changed since it has become personal in her life.  She ends the chapter by sharing an anecdote:

But on this day, Penny pumps her fist in the air and says, "I've got Down syndrome!" William tries to imitate her, pumping his own fist in the air and saying, "I don't have Down syndrome!" They erupt in laughter and start to run ahead of me, hand in hand.

The other chapter that I really enjoyed was the one on friendship.  Since I've been concerned about Kamdyn  being able to make friends lately, reading about Amy Julia's daughter, Penny, making friends was a relief for me.  It was also a relief to know that I'm not the only mom who has these concerns for her child with Down syndrome.

If you are interested in learning more about Amy Julia Becker, reading more of what she has to say, and her book small talk, you can go to her website amyjuliabecker.com.

Mark Leach sums it up nicely in his review by writing, "Becker’s small talk is what long-time readers have come to expect from her writing: inviting, thoughtful discussion about important issues written in a non-judgmental, insightful way. If that sounds like something you would enjoy reading, I encourage you to buy Becker’s new book, small talk."

Sensory, Behavior, and Relationships

I've been thinking a lot lately about Kamdyn's behavior.  Why does she do certain things?  What circumstances are surrounding the behavior? What is the environment like? What are the people around her doing? What common factors are occurring during the behavior? And when you step back and look at the big picture, it can be interesting.

Example #1:  People with Down syndrome have this stereotype about being so happy, friendly, etc.... all the time.  Of course we all know that's not true, because NOBODY can be happy ALL the time.  And I think Kamdyn just wants to make doubly sure people know that, because there are many times (probably multiple times a week) that we go to church with Kamdyn and someone offers a friendly hello to her, only for that person to get a firm "NO!" in their face.  Why?

Or

Example #2:  One day I announce to the kids that we are going to go to the library today, which is followed by a happy celebration, because my kids love the library.  We haven't been going as much lately, because taking all four kids with just one adult (me) on duty, isn't easy.  But I was feeling confident, so we did.  As soon as we got there, Kamdyn was on hyper drive, bouncing from one thing to the next.  She usually loves to sit down and "read" books, but she can't.

(A picture I took at the library a couple of summers ago of Kamdyn "reading")

She's too busy being pulled in every direction.  She's like a pinball.  And then, when my back is turned, she sneaks out, past the person at the front desk, through the automatic doors, onto the elevator, and you get the idea. Why?

These are just a couple of examples that I try to step back and examine, because I want to understand so I can help her. So Example #1.  Telling people "NO!" and shutting down interaction before it even happens.  She does this to adult and kids, alike.  Often, the more someone tries to engage with her, the more she will shut down and react this way.  I'm starting to think this is a sensory reaction.  She gets overwhelmed with the environment: people, noise, talking, lots of movement, etc, and she feels uncomfortable, so she reacts this way.  But part of me also blames myself a bit for this one.  When Kamdyn was little, people always wanted to hold her, and we let them. She was tiny and adorable and snugly, and everyone loved her.  I didn't think there was any harm in it.  When she got a little older, when people would hold her, she would immediately lay her head on their shoulder and suck her thumb.  People ate it up and thought it was endearing how she would snuggle like that.  It didn't take Brad and I long, however, to realize that she wasn't snuggling.  She wasn't happy, so she comforted herself by doing that.  I'm mad at myself now for ignoring it, but I didn't understand it at the time.  I didn't really know what sensory responses were at the time.  Now I know that she was shutting down.  And it makes me wonder if part of her reaction now is a result of what we allowed when she was younger.  She's rejecting interaction with people, because she's afraid.  She's afraid that they are going to pick her up or make her do something she doesn't want to do, so she shuts down the interaction before it's started.  The thing that makes me sad about all of this is that I don't want people to give up on trying to make a connection with her just because she reacts this way a few times.  She will open up as trust is formed.  I've seen it.  When she's comfortable, she will.  Not many people get to see the Kamdyn that we see, when she is able to be care-free and completely herself.  I hope they do.

And as for Example #2, there are no doubts in my mind that Kamdyn was on a sensory overload when we walked into the library.  Like I said, we don't go much any more, so we hadn't been in months.  It's a huge room full of shelves and shelves of books, computers, blocks and toys in the back, people.................... All of that bombarding her at once, and she was on hyper drive.  I don't know that there is anything I can do lessen that sensory experience in situations like that, because I'm not going to completely stop having those experiences.  I believe they are valuable experiences for all of my children.  And I'm not going to leave Kamdyn out, because she benefits from them as well, and  how can I promote inclusion if I don't practice it in my own family and daily life?  So for now I just have to be extra vigilant in those situations, use the tools I have (like a double stroller, squeaker shoes, and an alarm) and hope that as we expose her to those situations, she will learn how to manage the sensory input.


The double stroller is a life saver!


We have this Child Locator Alert System.  It doesn't allow the child to get very far from you before it alarms, so it can get pretty noisy.  I've seen a little about the Buddy Tag, and I'm interested in that one, because you can set the distance.  If anyone has one, I'd love to know your thoughts on it.


Understanding these sensory issues and dealing with them is definitely a challenge.  I would love to hear some experiences from other people.  What sensory issues have you seen in your child?  What strategies do you have in dealing with them?  What tools or mom hacks have been helpful to you?

Buddy Walk 2014

This was the first year that we had our Buddy Walk inside.  It actually worked out nicely, since it rained that day, and it would have been cancelled otherwise.  They had everything set up in a way that made the activities flow nicely.




We invited Kamdyn's entire preschool class to come to the Buddy Walk, and we were thrilled that one of her classmates and his mom came.  That's him in the picture below with, what I think might be, the world's scariest mascot.



They had all of the usual activities: bounce houses and slides, pumpkin painting, therapy dogs, raffle, and a walk around the hallways.



I can't help but think of how far we've come in these last few years.  For me personally, from being a terrified and worried mom, who was very unsure of the journey before us; to being a mom who just enjoys her kid and loves being a part of a pretty awesome community of people that is connected by Down syndrome.

Trigger finger, growth deficiencies, and glasses

In September, Kamdyn had a trifecta of procedures done.  With a lot of phone calls and coordinating, Kamdyn's ENT, orthopedic doctor, and an eye doctor from the hospital agreed to do their part at one time.  I'm so glad that it all worked out, since Kadmyn had a perforated ear drum that needed to be examined, tubes that were sitting in the ear canal that needed to be removed, an eye exam that needed to be done while she was sleeping since she won't cooperate in the office, and a trigger finder release in both thumbs.  Her perforated ear drum had healed (yay!), and the trigger finder release went over without a hitch.



We knew that Kamdyn needed the trigger finger release, because her thumbs would frequently get locked and stuck in a bent position.  Basically, any time she was doing an activity that required a lot of help from her thumbs, they would lock up.  It would look like her thumbs were dislocated when it would happen.

To allow her thumbs to heal after the surgery, Kamdyn had to wear full arm casts on both arms for 2 weeks.  And when I say full arm casts, it's exactly what you would imagine.  From the end of her thumbs to the shoulder was in a cast.  Her arms were immobilized in a partially bent position.  She could not eat or drink on her own.  She did figure out ways to do many things, but it was a long 2 weeks.



Kamdyn picked the colors of her casts.  When the surgeon opened the packages and saw that there were 2 colors, there was apparently some debate as to how they were supposed to use both colors.  They said they almost sent someone out to ask.  I think they did pretty well making the decision on their own.



Since the casts have been off, her thumbs have not locked up at all.  Unfortunately, she still resists using her thumbs.  I think she became so accustomed to not using them so they wouldn't lock up.  Her preschool teacher told me last week that she has been dropping her cup of juice on herself at snack time, and she did not have that problem before.  So she may also be experiencing some weakness from the surgery.  After her surgery, her OT went on a school break, so she has not resumed regular OT yet.  I'm hoping it will help when she does.



When the eye doctor did the eye exam, he found that in addition to needing glasses, Kamdyn also has a small optic nerve.  He said the growth of the optic nerve is controlled by the pituitary gland, so it indicates a growth deficiency.  Kamdyn saw the endocrinologist (again if you recall this post), and he ordered a blood test to check her human growth hormone and an x-ray to check her bone age.  Her bone age is a year delayed, and her human growth hormone was on the low side of normal.  He said there is a gray area that could go either way, and she falls in that area.  Rather than put her through the 3 1/2 blood draw with shots every 30 minutes to stimulate the hormones, we are going to monitor her growth for a while and go from there.  The endocrinologist commented that Kamdyn is obviously way off of the typical charts, but her size is not that small on the Down syndrome chart.  I never know what to say to this, because the most recent thing I am hearing is that we shouldn't be using the Down syndrome chart.  Yet every doctor uses it.  It also makes me wonder if many of our children have pituitary glands that are producing a minimal amount of growth hormone.  But since everyone just knows that our kids are small (even though not all kids with Down syndrome are), it's written off as a Down syndrome thing.  I wonder if there has been any research done on people with Down syndrome and human growth hormone.


(Checking out her boo-boo right after her casts were sawed off.)

And the glasses:



We decided to go with Tomato Glasses for Kamdyn's first pair of glasses.  So far, I do not regret the choice.  Here is a review that was very helpful to me in my decision-- Review: Baby Glasses.  I'll post another time about how she is doing with them, once she's had them for a while.

From Awareness to Acceptance: on the playground

Over the summer, my kids started making some more friends in the neighborhood and one of those kids happens to have Autism.  Honestly, I know very little about autism.  I know several people who have autism, and they are all very different.  I'm happy that my kids have become friends with this other child.  It's also been an opportunity for us to have some more conversations about disability, and it's allowed me to learn some things along the way about talking to my kids about disability.

I think that parents need to have more conversations with their kids about disability.  It needs to stop being this awkward topic that we shoosh our children about.  Disability is a natural part of life, and we should be more open about it.

Here's a few things that I have realized over the last few months in the conversations that I have had with my children:

1.  Do not use disability as an excuse for bad behavior.

My children have enjoyed becoming friends with this other child in our neighborhood, but that friendship has not come without challenges.  There are times when there is frustration over something that is said or confusion over a harsh reaction.  It caused me to think about how I want people to deal with Kamdyn's inappropriate behavior.  We could either say, "Well, ya know, she does have Down syndrome.  So everyone is just going to have to be more forgiving."  Or we could say, "Kamdyn should not have done that inappropriate or unkind thing that she did.  She has a disability, and that may cause her to have difficulty in understanding something right away or coping in certain situations, so we need to keep reminding her about the appropriate way to react or treat others, etc..."  I don't want anyone dismissing Kamdyn's bad behavior, because she has a disability.  I do want understanding and patience in helping her to learn how to behave properly.

2.  Teach your child to defend those who are being picked on.

Just today, I was so proud of Madison when I heard her defend a neighborhood boy, because another boy was making fun of him for riding a girls bike.  She said something like, "Who cares?! It's just a bike!"  Teaching them to defend others is also teaching them how to defend themselves if the need arises.  We teach our kids that they do not need to respond harshly or in an unkind way, but they can still defend themselves and others.  

3.  Teach your child to be a friend to everyone.

This seems pretty obvious to me.  But one thing that I have been doing recently is making up pretend situations and talking about what the appropriate way to respond or thing to say is.  Or talking out situations that have happened and how they could have been handled better.  How could we have been a better friend to that person?  On a side note, if there is a child that has a disability in your child's class, please do not exclude them from an event or birthday party.  They want to be invited to.

4.  Be positive while explaining disability to your children.

Kids ask questions.  They ask a lot of questions.  Please do not turn disability into something shameful that is wrong with a child.  Kamdyn is not sick. She is not a person to be pitied.  She has more to overcome than the average person, and she has challenges that are real and evident, but there is nothing wrong with her.  Make your conversations about disability as positive as possible.  Focus on the good things or strengths that you know about that person.  Explain that everyone has challenges, and we should be a good friend by encouraging that person and including them.  

5.  If you wouldn't be comfortable saying it about your own child, don't say it about another child.

Do you want someone saying that your child is retarded?  Probably not.  So don't say it about another child, even if they have a disability.  As most people are aware by now, that word is offensive and hurtful.  I also shy away from saying that Kamdyn takes longer to learn things.  She may take longer to learn some things, but I don't know yet what that entails.  Am I limiting her if I tell other kids that she takes longer?  She may not take longer to learn certain things, and she may be able to have talents or abilities that are better than her peers.  Have you seen these artists with Down syndrome from this school in Mexico? Or some really talented actors with Down syndrome?   Or talented athletes? And on and on.....

I'm still figuring out how I am comfortable with describing Down syndrome and what it means for Kamdyn.  I don't even know all of what it means for her yet.  I am learning as I go.  What are some things that you say to describe Down syndrome?  What questions have people asked you about it?  How did you answer?    

From Awareness to Acceptance: in the school house

We're continuing our conversation on how we can move from awareness to acceptance.  One of the areas that comes to mind is school.

School and education can be wonderful or it can be a disaster for families who have a child with a disability.  There are children with Down syndrome who are thriving in fully inclusive classrooms or special education classrooms with teachers who believe in them and a classroom of students who accept them.  Then, there are students with Down syndrome who are struggling to find their place in school with teachers who have given up on them.  There are parents who are fighting every year to keep their child in an inclusive environment.  I just spoke with a mom recently who lives near us, and she expressed her frustration over having the same conversation and the same fight every single year over keeping her child in the classroom that she wants her to be in.  The classroom that she is legally entitled to be in.  The classroom that she deserves to be in.

Let's thank our teachers who are striving to make our schools and classrooms better for children with disabilities.  Let them know that you appreciate it.  If you have a principal that is striving toward inclusion, tell them that you appreciate their efforts for inclusion.  And wouldn't it be even more wonderful if parents who do not have a child with a disability would say these things to their teachers and principals.  An encouraging word goes a long way.  Think of the difference it could make for that mom that I mentioned above if some of the other parents from her child's classroom would speak up and tell the teacher and principal that they are happy to have their child in a classroom with children of all abilities.

 

An area that has really been on my mind lately is the lack of inclusion in Christian schools.  I have taught at several different Christian schools, and I graduated from a Christian college 10 years ago.  I am proud of the education that I received from the college that I went to, but one area that is seriously lacking was any training in teaching students with disabilities.  There was not one class or discussion on teaching students with any type of disability.  What is that saying?  That these students don't belong in the private Christian school setting?  I hope not.

In my years of classroom experience, I had one student with a disability.  It's hard for me to say, but I didn't do enough for that student.  With a classroom full of students and no aid or any help, it would have been difficult to do more, but I could have.  We should have had more help classes, and I should have modified the work more.  But the thing that still upsets me the worst is how much that child was bullied.  When my class was with me, I was on top of any situation that came up.  Then, they go to lunch, recess, art, music, or any other special classes and the bullying starts.  By the end of that school year, there had been a fist fight and one student expelled, and I'm left wondering what in the world is going on in the Christian school.

We're teaching the Sunday School version of kindness and love.  We fill in the little bubble of the child that is showing kindness and that's it.  The conversation ends.  There needs to be an ongoing conversation if you want your child to be one of the kids that is kind.



And lastly , PRESUME COMPETENCE.  One of my Facebook friends designed this shirt with the words "Presume Competence" in black letters across the front.  How many of us would like to send our child to school on the first day with this shirt on?  No one should be judged by their appearance or their disability.  Our first assumption about any person should be that they are able.  Maybe they are not able to do something in the same that you are able to do it, but they can use a different way.  Maybe that is a wheelchair or an assistive device for communicating.  If something is not working for someone, we should adapt and find a different way to teach it or do it.  

We have recently partnered with The Learning Program and Kamdyn is using the program.  One of their Guiding Principles is:

Assume your child is able.

Always assume the child or adult with a disability is able.



If you would like to purchase a Presume Competence t-shirt, there are child and adult sizes.  I believe today is the last day to order.