to the publishing company that calls my child a "reluctant learner"

Dear ABeka Book,

I have used your materials for years.  I attended your college and used your materials.  I taught in the classroom and used them.  I homeschooled my children and used them.  As a result, I am very familiar with your philosophy of education, life, and faith.  I also know where your heart is coming from when you create your materials, and I believe it is coming from a good place that wants to honor God.

But I have to say, you have missed the mark in educating, and even in preparing people to educate, students with differences and disabilities.  Several (maybe more than several) years ago, I had a very nice email exchange with Dr Rand, who was the head of the education department (not sure who is now) about what the need for the college to do a better job of preparing their future teachers to teach students with disabilities.  At the time, I felt compelled to reach out, because my daughter, Kamdyn, has Down syndrome, and it became very clear to me that there is a huge gap in Christians schools educating students with disabilities.  Dr Rand told me that they had a course called "The Reluctant Learner" that touched on some topics relating to students with disabilities, but that they did not have the resources at that time to expand on that topic.  Although I enjoyed our email exchange, it was discouraging, because I feel like more needs to be done.  Like I said, that conversation was years ago, and I hadn't thought about it in years. Since unfortunately, many of us that have children with disabilities have resigned to the fact that Christian school is not an option for our child.  Of course there are some schools that are doing an amazing job of educating, accommodating, and including students with disabilities.  But there are many others that are either not equipped and unable, or unwilling.

I was reminded of all of this a few weeks ago when I received an advertisement from ABeka Book about a new homeschool magazine they are releasing soon.  One of the topics on the advertisement is a blurb about teaching "the reluctant learner".  And there it is again.  I didn't like that term the first time I heard it years ago.  Kamdyn was young at the time, but I watched her learn and grow. She loved to learn sign language.  I watched how she would clap and cheer for herself when she would learn a new skill.  She showed so much pride in herself and what she could learn.  I knew there was nothing reluctant about her.  Now, these years later, I have a 7 year old child with an intellectual disability, who is going into first grade this year, and I can still assure you that she is still not "a reluctant learner".  She works harder than the average child for every skill she masters and for every goal she meets.  That may cause her some frustration at times, but we cannot confuse frustration with reluctance.  So seeing those words in print, reluctant learner, in your magazine article hit me even harder, as an educator, as a mom.



Those words are so wrong.

The definition of reluctant, according to Webster, is:
feeling or showing aversion, hesitation, or unwillingness reluctant to get involved; also :  having or assuming a specified role unwillingly 

Children with learning disabilities, intellectual disabilities, and learning differences are NOT reluctant.  They are not unwilling.

They WANT TO LEARN.  My daughter wants to learn.  And it hurts my heart to see you perpetuating this notion, because I feel like it's the exact battle we face as parents of differently-children.  The battle that there is something wrong with our kids.  Our kids want to learn, they just NEED to learn in a different way.  Labeling them as reluctant places some sort of blame on them, as if it's their fault or by some wrong-doing that they aren't learning with their neuro-typical peers.

There is a quote that I love.  I actually love it so much that I put it my daughter's educational profile that I hand out to her teachers each year.



There are not "reluctant learners", only reluctant educators, who cannot think outside the box and get creative enough to allow education to fit each child's individual needs.

I encourage you to take this matter into consideration and make some steps to change these issues and be the first step in improving how our Christian school approach teaching students with disabilities.  Find advocates across this country who can help you.  Talk with some people who have dyslexia, ADHD, Down syndrome, autism, or other learning disabilities and see what would have helped them in the classroom.  I am happy to point you in the direction of some resources specifically related to Down syndrome.  Thank you for your time and consideration of this matter.

school panic

We are a little over a month away from school starting back up, and I'm already starting to panic.  Kamdyn made some really wonderful growth and progress academically and socially last year that I was really happy with.  But there were also some issues with a really bad long term sub, a lack of good communication that caused some issues, and the fact that I feel like I constantly have to "sell" that Kamdyn should be in the regular class.  There are some wonderful staff and teachers at her school, like her amazing aid, as well as a supportive principal.  But I don't always feel like our versions of inclusions match up.  It's like we are approaching inclusion from different planes and different philosophies.  And while I am 100% committed to this decision, it is tiring to feel like I need to be on top of everything at all times for the placement to be successful.

So there's that.

On a positive note, Kamdyn is pushing for more and more independence lately, and she is showing us that she is ready.  As a result, I've been trying to put my reservations over things that have happened in the past aside and allow her more age appropriate independence.  With that in mind, one of our goals for this school year will be for Kamdyn to walk from the car rider drop-off line to her classroom without her aid.  We will obviously be setting up all kinds of safe guards, such as extra sets of eyes in the hallways, text messages between her aid and I on when she is entering the building and if she made it safely, and lots of practice before we let her fly solo.  I know she can do it, and she will be so proud of herself.

But it also terrifies me.  With less adult intervention also comes more vulnerability, and that thought scares me.  Part of me wants to just throw up my hands and not send her to school and let the panic win.  Her older siblings are homeschooled, so it is very doable.  All throughout the school year last year, I was working with her every night to fill in the gaps, and I've been working with her all summer and making steady progress.  I know that academically we could be successful with homeschooling.  On the other hand, I know that socially and developmentally, I would hold her back.  Nothing intentionally.  But I am her crutch.  If I'm around, Kamdyn is clinging to me, and she doesn't push herself.

So right now, I'm dreading the looming first day of school.  I'm worried about her teacher not believing in her and pushing her.  I'm worried about another year of zero progress in speech therapy, because Kamdyn doesn't mesh with the therapist, and the school only has one.  I'm worried that the kids who loved her so much last year won't feel the same way this year.  I'm worried that the confidence and independence that I've been seeing this summer will vanish when school starts back up.  I'm worried about starting another school year, where she will cry at drop-off every day for a month and beg me to take her home.

I haven't written in so long, and I wouldn't say "I'm back."  I just had so much going through my mind that I felt a need to throw it out there.  I know a lot of parents count down to school starting back up so they can have the routine and schedule back in place, but I am not looking forward to it right now.  I'm hoping to be a little more enthusiastic over the next few weeks.  We'll see.

NDSC convention 2015 (part 1)

We were able to go to the National Down Syndrome Congress Annual Convention in Phoenix, Arizona this year.  We were really excited to travel across the country and see new things and, of course, enjoy everything that the convention has to offer.  We actually flew into Las Vegas, so we were able to take in a lot of the scenery, or lack there of in some areas (if you've been through there, you know what I'm talking about).  On the way, we drove right by the Hoover Dam, so made a quick stop to check it out.





The opening session on Friday could not have been any more amazing.  It was an "all-star" line-up of speakers and presenters with a young lady with Down syndrome interpreting the song "Beautiful" in Sign Language.  And then speeches by super model, Beverly Johnson and Tim Harris.  I wish everyone could have heard Tim Harris.

I was on a bit of information overload by Saturday evening, but definitely in a good way!


"Strategies for Supporting Positive Behaviors in the Inclusive Classroom"

I really enjoyed this session by Michael Remus.  Kamdyn doesn't have major behavior issues, in my opinion, but there are some that can be troublesome.  And since we want to pursue an inclusive education, I don't want anyone to use behavior as a reason to exclude her.  I won't share all of the information from the presentations, but I'll give some of the major points, as well as my personal notes from the session.

First of all,

Behavior IS communication.

  Oh my! I wish I had known this 9 years ago when I became a parent and even before that as a teacher.  It seems so obvious now that I can't believe I didn't get this, but I just completely missed it.  When a child behaves negatively, they are telling you something.  There are times when they are simply telling you that they aren't happy with your decision or they want to do the opposite of what you want them to do.  Like throwing a fit that they can't have ice cream for dinner or some other silly reason.  But they may also be telling you more.  Some of the things that they may be trying to communicate are:

• a health problem (like pain, allergies, illness, etc...)
• a sensory problem
• a problem with people (being separated from someone they like, being close to someone they don't like or teases them, too many people, abuse, neglect...)
• surroundings
• frustration with communication
• difficulty processing or needing more time to process
• other frustrations
• boredom

Some tips for helping with behavior:

• If you don't find the reason for the behavior, rewards won't work
• The negative behavior will continue no matter what room they are in if you don't uncover the reason for the behavior
• Look for a health related problem first so you can rule out any health issue.  There may not be, but it is good to have a discussion with medical professionals first.
• Collect data during the day to see when the behavior occurs, patterns, and what techniques are helpful.
• Build sensory integration into the day BEFORE the melt down occurs.  Have "sensory breaks" written into the IEP.  It could be as simple as taking a lap around the classroom, pressure or a weighted vest.  (Find out if the school has sensory materials)
• When praising behavior, be very specific and tell them exactly how the behavior was good, not just "Good job". 
• Give more positive reinforcement
• Find what tone of voice works best for that child (some need more stern, some need soft)
• Switch aids if they don't get along.  
• Can a peer help with something and cut out an adult?  Peer to peer interactions can be helpful.
• Work in small groups instead of the whole class or individual.
• Try different things around the classroom: florescent lighting bothers some kids, get lamps instead of overhead lighting, switch arrangement of the room, cut down clutter on the walls and around the room, have a "take a break" area in one of the corners that is comfortable and inviting, make a sensory corner instead of having the child leave the room
• Give more time to process: wait longer for them to answer (silently count to 10 or 20), go over the material and vocabulary the week before so they are already introduced to it and familiar, repeat instructions, use visual cues (like a check list or picture schedule).
• Give the child more choice and control in decisions to cut down frustrations.
• Use projects to make the learning hands on and fun and more interesting for the visual learner.

IEP goals:

• Is the IEP goal meaningful to the child. Do not make IEP goals to benefit the teacher.  "_______ will stay in her seat" is a bad goal for an IEP, because it is a goal for the teacher's benefit, not the child.
• Goals should be a natural part of the school day.
• Does the goal fit into the General Education class?
• Poorly written goals can cause bad behavior.
• Move on from a goal if it has been in place for a long period of time, because the student gets bored with the goal.

****************************************************************************

The next session that I attended was called "Students with Ds Can Learn Grade-Level Aligned Content".  It wasn't exactly what I had hoped, but the website that they referenced sounds like a very helpful resource.  The session was basically about how to navigate the National Center and State Collaborative website.  It is a resource developed by the federal government based on Common Core Standards on how to adapt the curriculum for the student with an intellectual disability.  So the general education teacher can search for a specific Common Core Objective for any subject and find an adapted version that zeroes in on the main purpose of the goal and gives a starting point for teaching the student.
All of that information can be found on the NCSC Wiki

****************************************************************************

"Supporting Parents and Educators as Allies for Inclusion in Kindergarten and Beyond"

This session was an outline of a Kindergarten Inclusion Cohort that trains families on how to advocate for inclusion when entering kindergarten.  I believe they offer a 9 month training course, and they are hoping that the model for their cohort will spread so that other families can benefit.  Here is their video on YouTube.

And a few helpful hints that I took away from their presentation:

• Ask to read every report and assessment BEFORE the meeting.
• If they don't provide the report or assessment, ask to reschedule until after you have reviewed it.  This is your legal right.
• Bring people to your IEP meeting: a knowledgeable friend, an advocate...
• Get involved in a group that discusses inclusion.  They will give you tips and ideas, as well as support.
• Special education is a service NOT a placement.
• Behavior IS communication. Find out what the child is communicating before removing them from the inclusive environment.  (And just a personal side note, I have read that school staff cannot legally decide placement based on behavior unless the child is a physical thread to other students or teachers in the classroom.)
• Watch the YouTube video above for this quote: "Do not make IEP goals that a dead person can do." LOL
• Make a portfolio about your child to take and distribute at the IEP meeting. Include: Family Mission Statement (about how you want your child to be educated), Gifts/Strengths/Abilities, What I like, What Works, Doesn't Work/ Things to Know About Me
• Use visual supports

On Sunday morning, I met up with a few other ladies so we could talk IEPs, swap ideas, and resources.  

And then I went to a session called "Solving the Mystery of the IEP Process", but I want to write a separate post on that, because I feel like I got so much from that one.

On the way back to Vegas on Sunday, we drove a little bit of Route 66 so we could say that we have been there.  The part we drove was in a little town called Kingman.

Some of the scenery on our drive:

Spent some time in Vegas:

Not to toot my own horn, but I did get carded TWICE while I was in Vegas.  Twice, people! Can you believe that! ; )

And I also went to the Grand Canyon for a day.  Amazing is my only word for that.

I'll try to write about the IEP session soon.  This year, I heard that they will be sending out the audio to all of the sessions, so I look forward to listening to a few of them that I was interested in but wasn't able to attend.

Just let her in

When you become a parent of a child with a disability, a lot of things that you never even realized are suddenly opened up to you.  You realize that there is this whole, amazing, supportive community that you never realized existed.  You realize that there are people doing amazing things right under your nose that you never knew about.  And you realize that there is still so much in the world that needs to change in order to accept and include people with disabilities.

I never realized how difficult some things were for people with disabilities.  I just assumed that there was always support, services, and programs for disabled children.  After all, there is Special Olympics and Special Education, and that should be good enough, right?  I didn't realize how a lack of inclusion and accessibility affected people.  But you don't have to be a parent of a disabled child for long to realize how inaccessible the world is to your child.

You can no longer walk into a daycare and just enroll your child.  You can't walk into a ballet studio or a gymnastics class and sign your child up for classes.  You can't call the preschool down the street and just enroll your child. Because they may not take your child because of their disability.  All except for one recent incident, I always asked ahead of time before I attempted to sign Kamdyn up or have her participate in a new activity.  I was made very aware of my mistake when they didn't want to accommodate her.

When I was looking for preschools, I called every one in our area and specifically asked them if they accepted children disabilities before I went to observe them.  One said that it wasn't a good fit before they even met her.  It wasn't a decision made based on her abilities or medical concerns.  They just didn't want a child with a disability.  I recently started thinking about the possibility of Kamdyn starting ballet or sports.  I asked Madison's ballet studio if they take kids that have disabilities like Kamdyn. (They said they did)  I don't think Kamdyn is ready for organized sports yet and all of the special needs programs are too far from us, so  I'll have to wait and contact the sports programs in our area, when the time is right, and see if they will allow her to participate.

And that needs to change.

No one knows a child better than their parents.  When Austin was 4, I felt like he was ready to sign up for soccer, so I signed him up.  He was a little young, and he probably could have waited another year, but he did ok.  We also signed Madison up.  She hated it, and she was miserable.  The next year, she wanted to try again, so we let her.  Once again, it wasn't for her.  So we didn't sign her up again. It wasn't good for her, and we (as her parents) were capable of figuring that out.  A parent knows what their child is capable of and if they are ready to participate in something.  So if I feel like my disabled child is ready for something, that should be sufficient.  We shouldn't have to place our child on trial to prove why we think they are ready.  And if some modifications or accommodations are needed, is it really the end of the world to allow them?

Maybe some of you are thinking, Geez, get over it.  Your kid has a disability.  They don't call it "special needs" for nothing!

And my response would be, trust me, I am well aware of my child's special needs.  I sit in meetings, read evaluations that reduce my child to a number, read reports that detail the most ridiculous and common childhood behaviors, and study disability law for hours.  I know exactly what my child's "special needs" are.  But does that mean she can't walk on the same balance beam as another child or dance on the same stage for a recital?  Does it mean she shouldn't be allowed to play on the same court or field with a non-disabled child?  Does it mean that the social skills that are learned from participating in these activities: team work, sportsmanship, and friendships, aren't as beneficial to her?  I hope you would answer no to these questions.

So just let her in.  Just include her.  Give her a chance.  No one wants their child to succeed more than their parents.  Trust that we have the best intentions for our children, and that we are not trying to ruin your program,  We just want our child to be included.

I realize most of the people reading this can probably understand this, and I haven't been writing much lately, but this is something that has been on my mind for a while.

Decisions

There are days where I second guess myself.  Like the days where a bad report comes home, and I realize that even a common, childhood folly has to be recorded and analyzed.  Or when I'm once again reading statistics of how many opportunities of a task were reached and what percentage of the time she was successful at an activity.

On those days, I wonder about what I am doing?

Am I teaching her that her best is deficient?  Am I teaching her that she has to change to fit into the world?


But I quickly come back to center and to the place where I know in my heart that I am doing what I believe is best for Kamdyn.

As we move into our next big decision for Kamdyn, I have a lot of questions that are running through my mind.

If I push to get her into a mainstream classroom, am I robbing her of the chance to be with people where she will feel like she belongs?

But is it best to choose a self-contained classroom for her? Is it where she would thrive?

Or should I homeschool?

The thing that encourages me as we look forward to making this decision in the near future is the fact that countless parents have gone before us and have chosen all 3 of these options for their child, and they were right for their child.

Knowing that thousands of other parents are weighing this same decision RIGHT NOW gives me peace, because we are all trying to do the best for our kids.  That we have options is a blessings in itself, as well.

So to anyone else who is in this same place, we will make the right decision.  Because we love our kids, and we want what is best.  So let's all take a deep breath and take this one day at a time.

On baby Leo's mom

When I first read the story about the Armenian family who gave birth to a baby boy, Leo, with Down syndrome, my heart broke.  My heart broke that baby Leo's mom had decided to give up her son and divorce her husband for keeping the baby instead of sending him to an orphanage to live out his days.  The natural reaction for any mother or father is to wonder how any parent could make such a choice.

But we are forgetting that not long ago American families were making the same choice.  Children with Down syndrome were not raised in homes.  They were raised in mental institutions.  And unfortunately, this is what is still happening around the world.

When a mother gives birth to a baby and doctors see that the baby has Down syndrome, they immediately tell her that she should send the child away.  She is told that she cannot care for the child, and he will be a burden to her family and will not be accepted by society.  All the while, this mother is also very aware that her child will be shunned by her family and community.  If the mother is working, who would care for the baby while she is away?  What school will accept him when he is old enough to go?  Probably none.  And how will she afford to pay for the medical bills that she imagines will be great?

Hours after the mother has given birth, she is pressured to make a decision.  She must immediately decide what she will do.  Keep the baby and face the unknown or send the baby away as all of the doctors and medical professionals are suggesting and pressuring her to do???

This situation plays out again and again and again across the world.  This is why there are so many children with Down syndrome in orphanages across the world.  Even if they want to keep their baby (which I realize that there are some who do not want to), they don't think that it's a possibility.  Are they going to trust their heart or the qualified medical professionals who are telling them that keeping the child would be wrong for them and the child?

In this case, dad decides he wants to keep the baby while mom doesn't (although that is not what her side of the story is).  Is dad a hero?  I'll let you make that determination, but I all I ask are these things:  If mom was keeping the baby and dad was leaving, would she be a hero?  Would dad be made out to the villain like she is right now?  I supported a mom, right here in the United States of America, not long ago who was being kicked out of her apartment for not aborting her baby with Down syndrome.  This situation still happens, even in the US.  My other question is: Would dad be a hero if baby Leo didn't have Down syndrome?

While I don't think it's right for a mother (or father) to abandon their child, my heart also breaks for baby Leo's mom, because I know the inner turmoil that she went through when her baby was born with Down syndrome.  I know all of the doubts, fears, and heartache that she felt.  Because I felt it too.  At the time, the only pain that I could imagine would be comparable would be a death.  The difference between us is that everyone told me I can do this.  And everyone told her that she couldn't.

Yes, she has  made a mistake, and I believe it is a big mistake.  But we also don't know all of the circumstances that surround the decision that she has made. Maybe the relationship between these 2 was coming to an end, and she feels like the baby would have a better life in New Zealand with the dad's family, and it is best to let him go.  Maybe she was not asked or welcome to go along with dad and baby (as she claims).  We don't know the whole story.

What we do know is that a woman's lowest and most vulnerable moment, probably of her life, was broadcast for all the world to see and judge.  And it was done by the person that you are supposed to be able to trust the most in the world, her husband.  So instead of villianizing her, maybe we should try to support and encourage her.

If she, by some small, miracle of a chance, reads this, let me be the first to tell you, from one Ds mama to another, you CAN do this.  It's not too late.  Your baby needs his mom.  He needs YOU.

And if we want to see this type of thing change, I don't believe the answer is in shaming and judging these parents.  And it's not making parents who keep their baby a hero either.  The answer is in supporting them, getting services in their countries that will support their children as they grow up and when they become adults, and changing the perception of Down syndrome around the world.  That is the only thing that will make these stories a thing of the past.

Baby Leo deserves to have a mom and a dad, and it breaks my heart to think of all of the blessings that this mom will miss out on if she isn't a part of his life.  So I hope that she will make an effort to stay in his life, and I hope that dad lets her.  

The song heard 'round the world

Many of us have seen the video of Maddison Tevlin that went viral not long ago.  In the video, Maddison, a 12 year old (at the time the video was recorded) young lady with Down syndrome sings John Legend's song "All of Me".

When I first saw the story being posted on Facebook, I did what I tend to do with many of these stories..............

Keep on scrolling.

But after seeing many of my fellow Ds mamas post it, I decided to watch it.

I was surprised by the video at first, but maybe not for the reason you may think.  At first I was surprised that her vocal abilities weren't better after I had read so many people's reactions to the video of her singing.  Many times after I read a story like this, it only leaves me feeling deflated at how far we still need to come in our society in accepting people with disabilities.  Titles of stories with the words, "In spite of...." or "Even though....." spin disability into something negative when it's not.  It is a part of that person.  End of story.  Other times, the writer makes a big deal of an everyday activity, skill or task that a person with a disability is able to accomplish.  Sure, not all people with disabilities have the same strengths and accomplishments, but neither do non-disabled people.  It shouldn't be such a shock when someone with a disability is good at sports or playing an instrument or art or has a successful job or business. But our view of disability is so limited that those stories are almost still necessary.  I was feeling that way about Madison's singing video at first.  That love/hate thing, where I love that someone with Down syndrome is being so widely recognized but hating that it's for an everyday thing like singing a song.

On a personal level, however, I would love for Kamdyn to be able to have the speech ability that Maddison has.  Her speech while singing and speaking is very clear, and many children with Down syndrome will have years of speech therapy and still not have speech that clear.  That's the biggest thing that I took away from the video.

 I really liked this Today Show article about the video, because I felt like it explained things a little better.  The fact that she sang a song isn't so much of the accomplishment, but the voice control it took her to do it compared to how her mom describes where her singing ability started a year earlier:

"She would sing all the time and I really wanted her to improve because it was more screaming or like a monotone sound coming out,” Grace Tevlin said, adding that she’s seen a “huge improvement” as Madison has learned techniques for improving her pitch."

I also liked this explanation in the article:

Singing is harder for people with Down syndrome, a genetic disorder characterized by cognitive delays and speech problems, due to low muscle tone and because the structure of their mouths and tongues is different, making it more difficult to form words, said Dr. David Smith, the program director for the Down Syndrome Clinic at Children’s Hospital of Wisconsin. 

as opposed to the actual singing video that said, "Very few people with Down syndrome will ever be able to sing."

I especially appreciated the statement, “She’s a talented young lady and I really, really liked listening to it,” said Smith, a family medicine doctor who has seen some people with Down syndrome sing over the years. He added: “It’s a shame that we’re still fighting the battle and thinking that people with Down syndrome can’t do stuff and they can.”

People are starting to understand that disability or Down syndrome doesn't mean a person can't do something, but we have a long way to go still.

 

#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.  

From Awareness to Acceptance: accept who they are

I was thinking about Down syndrome Awareness month the other day.  I definitely think that there is a place for awareness.  When Kamdyn was born, I needed awareness.  I knew nothing about Down syndrome.  But as I learned, I started sharing it with others.  So the other day, I thought, "What now?"  Anyone who knows Kamdyn and I is pretty aware at this point.  I started thinking about what the next step should be.  Then, I read Meriah's post about making this Down syndrome Acceptance Month instead of Awareness Month.  So let's do that.  Let's spend this month talking about ways that we can move past awareness and to acceptance.

Image by Meriah Nichols

One of the first things that comes to mind with ACCEPTANCE is accepting WHO the person is.  Accept them as they are.  Think about your spouse.  If you married your spouse because you wanted to change them, your relationship is probably doomed.  You accept them for who they are, and you love them. We need to accept people with Down syndrome for who they are.  We need accept them AS THEY ARE.  

I know that Down syndrome is not a spectrum like Autism, but once you get to know some people with Down syndrome, you cannot help but notice how different they are.  Obviously there are a lot of similarities too, but you cannot deny the differences.  In personality, strengths, weaknesses, abilities, and even physically.  Kamdyn is shy.  She does not like meeting new people, and she gets very nervous in new situations.  But once she is comfortable, she is full of personality, and she is so much fun to be around.  Kamdyn is significantly delayed in her fine motor skills and speech and language.  She learns things very quickly though, and she usually surprises us with things that we didn't know that she knew or understood.  We have Kamdyn in several different therapies, mostly at school, to help her with some of her delays.  But I decided a while back that our life as a family and her life, cannot be run by therapy appointments.  The areas that she is delayed in are just that: DELAYS.  Delay means that the event occurs later.  She will get it.  She just needs more time, and she needs me to accept her for who she is and where she is at.  

    

What about friends and family who aren't directly involved with someone with Down syndrome like Kamdyn?  How can they show acceptance?  They can do the same thing: accept them for who they are.  Stop comparing them to each other and to that other child with Down syndrome that you knew, who was "higher functioning".  They aren't a dishwasher.  They are a person.  They are a child.  Accept them.  Every person has value, and every person has something to offer the world.  If you can't see that, than you are missing it.  

What are some practical, day-to-day things that you can do when you see someone with Down syndrome?  You can say "Hello", and then WAIT for a response.  Let them answer.  "What if I don't understand what they say" might be your response.  I think if you really listen and try, you will understand.  But if you can't, so what?  What harm was done?  You will have treated that person with kindness and respect and tried to make a connection with them.  You can't wrong in doing that.  

I might be writing to myself here at this point, and I might be preaching to the choir with some of these posts that I have in mind, but I would like to keep talking about this subject of ACCEPTANCE throughout the month of October.  Let's talk about it.  Let's share ideas and experiences.  

ARK Therapeutic Review

I was asked to try out a couple of products from ARK Therapeutic a while back.  The first product is the Y Chew.



They sent two different Y Chews for us to try, a blue and a green.  One of them was a little more firm than the other.  I did give them to Kamdyn to try out, but I decided not have her use them very much, because she is not a big mouther or chewer, and I didn't want to encourage her to do so.  They definitely seem very sturdy, and I think they would last a while even for children with teeth.

Brooklynn also tried them, and I found that they were wonderful for teething.



When I posted the picture above of Brooklynn on Facebook, I got a couple of responses about them.

One mom said, "They'd be great for redirecting those kids who like to chew on EVERYTHING, though!"

Someone else, who had some personal experience with using them, said, "They were great for Jess when he wouldn't stop chewing everything. We would get him these and those chewable necklaces."



We also tried a set of 3 Lip Bloks.  The mouth piece of each one was a different length.  The first one, a yellow one, had a pretty large amount of space between the block and the top of the straw.



The blue one had a little less.



And the green one has a very small nub, which pretty much forces the user to put their lips against the block.



As you can see from the picture above with the yellow Lip Blok, Kamdyn does not have any tongue protrusion with a small straw.  I think that if she did, this would help to train her tongue to stay back.

The difficult thing about using these, however, are that they are a bit awkward, so it is not comfortable or convenient for the child to use.  You couldn't just hand your child a cup with this in the straw and expect them to use it.  It takes hands-on adult assistance.  And because of that, it also takes away independence from the child.  Kamdyn cooperated the first couple of times that I tried them, and I was able to get these very blurry pictures, but she grew more and more resistant to using them.  I feel like they would be a good tool to use in therapy if the therapist is willing.

My final review on these products would be that they are well-made and affordable at $24.99 for a 4 pack of Y Chews and $9.99 for a set of 3 Lip Bloks with straws that they attach to.  I think they would be very useful for a child with feeding issues and feeding therapy.

For feeding therapy, I have also heard speech therapists recommend using a product like this Basic Bear Bottle Kit to help with straw drinking.  Kamdyn's Early Intervention Speech Pathologist used the Oral Motor Probe Set while she worked on oral-motor exercises with Kamdyn.  And a fellow Down syndrome mom commented about the Z-vibe that, "it's been the only way i can give her [child] solids without her instantly spitting them out."

Summer wrap-up

The summer flew by so fast.  I cannot believe how quickly it flew by!  I did a couple of blog hop posts earlier in the summer, and then I didn't keep up with it.  I still have NDSC convention stuff I would like to share if anyone is still out there (enter crickets chirping).  So this is my attempt to prime the pump and get back to writing/sharing.

So this about sums up the last few months.............

Summer Camp for Kamdyn

Kamdyn continued to go to "school" throughout the summer.  It guaranteed her a spot once preschool opened up, and she was able to continue with her therapies at school.

Color Run

Besides a few hills that I could not have pushed a stroller and ran if my life had depended on it, I ran most of the course.  It was awesome.  And then I wanted to fall over and die.  And then it was awesome again.  I must do it again.

Hershey Park


Our local Down syndrome group had an event at Hershey Park.



Disney Cruise


Can we say "Most perfect and amazing vacation EVER!!!!!"




Flower girl duties


NDSC Convention


Meeting Facebook and Blogger friends.



And meeting some other pretty awesome people (David DeSanctis from the movie Produce)




YMCA camp for Austin

It was a rough start for him, but once we switched him to baseball camp it was much better.



Family field trips

Gettysburg


Horse Camp for Madison




My birthday.  29 forever..................


More family field trips

Hershey's Chocolate World after Kamdyn's ENT appointment at Hershey Medical Center.


Army Heritage and Education Center after Austin's ENT appointment.


And then the first day of school....................................







Kamdyn is 4 now, and she attends a private preschool in our community.  She is currently in the 3 year old classroom, and we plan on having her stay in that class and complete an extra year of preschool before moving on to Kindergarten.  If I don't homeschool her, we plan to have her placed in the general education classroom for Kindergarten.  Her speech has really been taking off over the last few months.  This past week, she greeted two different friends by name when she saw them.  She had never done that before, so I was really excited by that.  She can also jump now, and she can run, instead of just fast walking and moving her arms really fast. Her favorite movie is The Muppets (old or newer version).  Her favorite color is yellow, and she asks for it regularly.  These are pretty big deals for me to be able to say, because I had been sad in the past that she wasn't able to tell me these things.  She also loves Frozen.  Big surprise, right?  She loves to sing "Let it Go", and she mimics Elsa's actions while she sings.  It's pretty stinkin' adorable!

So there you have it.  A summer wrap-up and a quick Kamdyn update.