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.

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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

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"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.