What My Child’s Behavior is Telling Me

September 25, 2018 by Courtney

When I gave feedback as a teacher to parents with a student who misbehaved I always used a “complement sandwich.” It went something like, “Johnny always helps his friends with map skills, but he often talks out of turn. I know he’s a smart young man and can learn to raise his hand first when others are talking.”

So, when I think about my own smart young man’s behavior, I’ll start with a complement sandwich. Just this week, the bus driver told me “Troy is the most polite boy he’s ever met. He’s always saying please and thank you; most kids twice his age don’t do that.” I blushed instantly. My child is amazing, I thought. That same day I got a call from his teacher. Troy has been pulling off his shirt at circle time. She had to threaten to throw it away, before he would stop. Oh, dear!

Read Related Post Here: Why Your Child Needs a No-Consent Letter for Seclusion and Restraint

Troy is an amazing kid, but he’s also VERY impulsive and loves to get attention (any kind of attention). If you’re thinking this sounds like most 4-year-olds, you’re right. Still, Troy’s persistence in impulsivity, avoidance, and negative attention-getting trumps most preschoolers. When I compare his behavior to his typical twin’s there’s one big difference: the threat of consequences in one moment doesn’t occur to Troy the next time he decides to exhibit the same behavior. He just doesn’t remember, or doesn’t care.

In fact, 30% of children with Down syndrome have behavior problems. Left untreated, these behaviors often cause problems with keeping a job and living independently as an adult.

I’ll be honest, sometimes Troy’s behavior drives me crazy. When he’s thrown food he doesn’t like for the hundredth time or decides to do the “lumpkin” right in the middle of Kroger because he doesn’t want to leave I often just want to SCREAM. That’s why I bought a new book especially targeted to behavior of kids with Down syndrome called “Supporting Positive Behavior in Children and Teens with Down Syndrome” by David Stein. I was lucky enough to also see the author speak at this summer’s National Down Syndrome Congress‘ Convention in Sacramento.

I often don’t know what to do about Troy’s behavior in the heat of the moment. Stein says that’s normal, and when you don’t know what to do think about your relationship with your child. Do they feel safe? Can they communicate their needs in some way, whether it’s verbal or through a visual? Stein says the most important factor in our loved one’s development is their relationship with parents or guardian. Attachment helps your child stay regulated and motivates them to do their best.

When Stein spoke about the “brain-based reasons” for misbehavior in children with Down syndrome, I realized why Troy was so different than his typical twin. He explains that their are “key differences in the frontal lobe, hippocampus, temporal lobe, brain stem, and cerebellum that leads to different functioning in: communication, social engagement, the “social-emotional radar,” information processing, motivation, and executive functions.”

Read Related Post Here: The Quiet Before the Storm

The best advice I got from Stein’s book and workshop was his “respond, don’t react method.” It’s a simple concept that’s not always easy to implement. He gave 4 tips for setting our family up for success:

Establish routines (we do this already, because I’m an obsessive routine person…and it really works for Troy)
Visual schedule (I wish I was better about implementing this. We do have a food schedule that Troy loves. This takes a lot of planning and prep work. I could use one for when we’re out and he doesn’t want to leave)
Brief, simple language (sometimes Troy just doesn’t understand what I’m asking him to do when he’s upset or I don’t understand him)
Keeping emotions in check (this is the hardest one; I always feel like Troy is misbehaving to upset me…logically, I know this is untrue, but it’s hard to remember this in the heat of the moment)

Stein says it’s important to think ahead of your child’s common behavior problems. I finally did this when Troy’s “lumpkin” situation got out of hand. He’d fall to the ground and weigh a thousand pounds any time he didn’t want to leave the pool, library, park, etc. I created a simple visual schedule for his most common destinations. For example, at the pool I showed a picture of the pool, then the shower and dressing room, then eating a granola bar in the van, then watching his favorite show at home. I told him if he could watch Jake and the Neverland Pirates if he just followed the steps. He loved the visual schedules and it solved the problem for those locations.

Read Related Post Here: Why Your Child’s Teacher Should Be Trained in Non-Violent Crisis Intervention

Everyone wants a quick fix when it comes to behavior problems. Like anything else though, it takes time and thought. All your problems will not be solved overnight, but Stein says you’re looking for long-term positive change. I highly recommend “Supporting Positive Behavior in Children and Teens with Down syndrome.” It’s a thought-provoking book, that you’ll come back to again and again.

How do you use positive behavior supports for you child? Comment below with your stories.

Last Minute Holiday Gifts for Preschoolers With or Without Down Syndrome

December 4, 2017 by Courtney

If your home is anything like ours, the last thing your child needs is another plastic toy. That’s not to say that some of those type of gifts won’t make it under the tree, but I’m always on the look out for thoughtful gifts that teach empathy, confidence, and cooperation.

I’m leery of gift lists that are only for children with Down syndrome. My son, Troy, plays with everything his typical twin brother plays with, but there are some things he really gravitates towards. I wanted to share an all inclusive gift list. So, I gathered up all of Troy’s favorites, but these are also toys that his 2-year-old sister and 5-year-old typical twin play with often. I tried to choose gifts that teach an important skill like empowerment, empathy, cooperation, STEM, fine motor skills, gross motor skills, etc.

Without further ado, a list of my favorite gifts sure to empower any preschooler in your life:

The affiliate links in this post help you easily locate the products I mention, but don’t cost you to use them. When you use the affiliate links you help to support the efforts of this blog.

Does your child with a little something extra love music? Mine is obsessed. We’ve run the gamut of speech related music CDs, and some are better than others. Troy’s favorite is “Kids’ Express: Imitation Station.” He knows every word to this CD. You can find it here. My favorite is “Kids in Action,” because it gets all my kids up and moving.

There’s also Apraxia specific CDs like “Time to Sing,” which slows down all the well-known nursery rhymes and children’s songs so Troy can sing them along with the beat. It’s amazing how clear Troy can talk when he sings. Has anyone else found this to be true? I really think music is the key to better speech for Troy. We even make up our own songs to get dressed, wash our hands, brush our teeth, or learn our address and my phone number. Message me if you want any other music CD recommendations. We have a ton!

Related: Adult Self-Advocate with Down Syndrome and Apraxia Gives Hope that the Seemingly Impossible Can Be Reached with the Right Motivation

STEM, as well as sensory activities are all the rage these days and this “Marble Genius Marble Run” combines both in a perfect toy (albeit plastic). All three of my kids LOVE this toy, and use it EVERY day.

My neuro-typical 5-year-old has impressed me countless times as he’s created a unique and challenging new marble run. Troy hasn’t mastered the mechanics of how to put the marble run together, but he loves helping Hunter physically put the pieces together (great fine motor task). All three kids are almost in a zen-like state as they watch the marbles run down the maze of tubes. This is definitely my favorite toy, because I don’t have to feel guilty about taking a mini-mental break from the kids while they play with it.

Troy’s teacher is always commenting on how well he takes turns and waits during game time at school. I credit this in part to his love of board games at home. Stack Up! board game is just one example of a game that really teaches it all: balance, counting, fine-motor skills, hand eye coordination, cooperation, and patience.

Playing Stack Up! Check out the tongue–lots of concentration!

It’s not easy or fun to always sit down with your kids and play these type of board games, but it really does pay off. What I like about Stack Up! is that all three of my kids (age 2 to 5, typical and not) can enjoy the game because it scaffolds the directions to reach each age player. Troy and his siblings sat with me a few times to play, and now they enjoy playing without me.

Related: Fostering Acceptance in the Classroom

Books are always a timeless gift. There are so many great children’s books to choose from. Troy especially loves any book that rhymes or can be sung like the “Pete the Cat” series or anything by Dr. Seuss. When we read the book, “What Are Your Superpowers?” by Marget Wincent together they were eager to name their own superpowers.

Troy could relate to the book’s character whose superpower is dancing alone when no one is looking. Hunter, my typical twin son, was a bit more skeptical. He couldn’t understand how every day actions could count as superpowers, which led to a great discussion on importance of valuing everyone’s gifts, big or small.

If you’re looking for something a little more high-tech, Osmo is a fantastic interactive learning game preschoolers can use on any iPad. Troy is obsessed with Osmo Monster, Mo, who asks the kids to draw objects that he then pulls into the iPad screen and uses in hilarious ways. All three kids are laughing nonstop with this game.

Other Osmo games my kids enjoy are Tangram an interactive wooden puzzle, Numbers where the kids can practice one-to-one correspondence and counting, and Words where they use letters to build sight words.

What would the holidays be without one fantastic gross motor gift. This year Troy is getting “Radio Flyer My 1st Scooter.” His typical twin is getting a Razor scooter, but Troy struggles with balance and coordination so I’m hoping this wider-based scooter helps.

Right now Troy uses a specially fitted Amtryke bike that he’s close to mastering. You can learn more here. I’d really like to get him on a “Strider Bike,” which he already has but doesn’t like because it takes a lot of core strength and balance. The Strider bike company is always at the National Down Syndrome Congress Convention, and I think it is a great beginning bike for our loved ones with an extra chromosome.

What do you plan to get your loved one with Down syndrome this holiday season? Share your ideas with me below.

Down Syndrome Blogs Sure to Inspire

October 30, 2017 by Courtney

In the beginning there was Google. It’s what every new mom turns to these days when they receive their child’s Down syndrome diagnosis. Like it or not, moms want information and Google provides it fast.

That’s why it’s so important that advocates like myself and the ones you’ll meet below win the Google Wars. Out-dated, misinformation about Down syndrome is rampant on Google. But slowly more and more blogs, as well as national Down syndrome organizations are putting an end to this misinformation. Some argue that the blogosphere is flooded with too many new moms sharing their journey with a child with Down syndrome. I say bring it on!

Read Related Story Here: Why I blog

It’s important that we advocate and share our personal stories, so that new moms and strangers of Down syndrome develop a new, better perspective of people living with Down syndrome. I started Inclusion Evolution to provide one more glimpse into the diverse world of Down syndrome. If I inspire one person, change one mind, then my goal is met. Other bloggers are doing the same, and below I share my top 10 favorite.

10 Most Inspiring Down Syndrome Blogs:

Cedar’s Story:

This has got to be the best diagnosis-centered blog on the web. One-year-old Cedar’s mom, Dawn, does a fabulous job sharing hundreds of diagnosis stories. The first place I turned when I learned about Troy’s diagnosis was the web, and I wish then that I would have had Cedar’s Story. Click here to read a diagnosis story from the Ivory Coast in Africa.

News Anchor to Homemaker:

Jillian Benfield’s raw emotion and eloquent words will have you coming back for more. I feel she and I could be best friends, and I don’t even know her. As I began reading her blog, I realized we had SO much in common. First, we both grew up in the same county in Florida. Second, we were both television journalist (albeit–she was much more successful), turn stay-at-home moms. But mostly it’s her first son, Anderson, who has Down syndrome that hooked me. Her “Mid-Week Moral” will cut you down deep, and bring you closer to her beautifully broken journey and your own.

The Sassy Southern Gal:

Almost every blog about Down syndrome has a baby or toddler in its starring role. But I’m hungry for sneak peeks into Troy’s future, so I’m always looking for reads on teens and adults with Down syndrome. 17-year-old Rachel fills me with such hope for Troy’s future. She’s the star of “The Sassy Southern Gal,” written by her mother and my advocacy mentor, Jawanda Mast. Jawanda’s blog shows Rachel’s journey of inclusion from her elementary school years to her present senior year. Rachel is an amazing self-advocate, and the blog show’s this transformation. Check it out here.

Grown Ups and Downs:

Another fabulous blog from a mother of an adult with Down syndrome. Brought to you by the co-author of “The Parents’ Guide to Down Syndrome,” Mardra Sikora inspires young moms to always dream big. Her son, Marcus, is also an author and amazing self-advocate. Check out his children’s book, “Black Day: A Monster Rock Band,” and all his adventures here.

A Day in the Life with Down Syndrome:

This is a new blog (like mine) with an extra special mission. To share families’ journey with Down syndrome. You can submit your own story and also learn about Down syndrome resources on and off social media. The author is Meriah, who first inspired me with a cross-disability blog now called Two Thirds of the Planet. Using her own disability as a compass, Meriah provides a unique glimpse into life with a disability.

This Life I Live:

The blogosphere is dominated by strong women sharing stories about their beautiful children with Down syndrome. It’s rare to find a father’s perspective, so Rory Feek’s blog is a rare gem. He writes it like an open diary about his wife who recently passed from cancer, his country music career, homestead farming, and his youngest daughter, Indy, who happens to rock an extra chromosome. Feek plan to homeschool Indy. Check out the one-room schoolhouse he recently built for her here.

Rory Feel with his late wife and daughter, Indy

Lexi Loo, Lily, Liam & Dylan Too:

If you want more from a blog than just Down syndrome talk, then Stephanie’s parenting and lifestyle blog is your jam. It has the perfect mix of decorating tips, stylish clothes and toys, as well as updates on her son Liam who has Down syndrome. Click here learn about her son’s journey.

Stephanie and Liam from “Lexi Loo, Lily, Liam, and Dylan Too”

No BS About DS:

It’s common to find a Down syndrome blog that’s heavy on emotion, but as Troy gets older I can’t help but want more. Enter “No BS About DS.” Co-Author, Sruthi Muralidharan does a good job of including human interest pieces, but also scientific posts. Check out their Ask the Expert post with Dr. Brian Skotko here or their post about Miralax for Constipation here.

Sruthi Muralidharan with her husband and son, Tejas

I Am River

River is a little boy with Down syndrome that lives between the United Kingdom and Tanzania. His mom and author of “I am River” blog, Hayley has an amazing way of sharing their unique story through words and pictures. I love this blog for it’s international flair and amazing prose. Check it out here.

Down Syndrome Diagnosis Network

My last pick for most inspiring Down syndrome blog comes from a volunteer-run organization and non-profit, Down Syndrome Diagnosis Network (DSDN). They have a great website with resources for moms with children from birth to age 5-years-old. But they also share personal stories on their blog from hundreds of parents across the United States. Check it out here.

What are your favorite blogs? Share in the comments section below!

“Born to Eat” Book Review Part 2: Benefits of Baby-Led Weaning for Children with Feeding Issues

October 27, 2017 by Courtney

“I want you to think about a food or texture that makes you feel ‘ick.’ Now, imagine someone bigger and faster than you pushing it into your mouth! Then, imagine you are strapped to a chair and can’t verbally communicate!”

Speech and Language Pathologist, Nikki Henry, treats children with oral-motor and sensory disorders, and says the nightmare description above can exacerbate feeding issues. That’s why she’s a big fan of “Born To Eat,” a book that creates a whole-foods family centered approach to baby’s first bite.

You can read more about the particulars of this approach in the first part of my book review for “Born to Eat” here.

The book is based on baby-led weaning, which allows baby to explore a variety of flavors, textures and shapes in a child-directed manner.

Henry says this approach can be particularly beneficial to children with certain feeding issues, because it allows them to become familiar with and manage a variety of textures.

Henry cautions that this approach is not a “cure all for sensory issues” but she strongly believes some sensory issues may be avoided.

“The bottle, breast, or spoonful of pureed food goes straight to the back of the mouth. This robs the child of experiencing the preparation phase before swallowing. When an actual texture is finally introduced they do not know how to manage it, which can sometimes produce anxiety and avoidance of specific textures,” Henry explains.

3 Steps to Begin the “Born to Eat” approach with a child who is delayed or has feeding issues:

1. First, Henry says “identify where your child falls in his development.” For example, if your 6-month-old child is developmentally at a 3-4 month level, then they are not ready to dive into solids.

Since Troy’s first bite it’s been a family-centered approach

“Keep in mind that it’s not just about food in mouth and swallow,” Henry explains. Fine and gross motor skills are essential in a child’s readiness to eat.

Your child needs to be able to sit with little support, and must be able to bring food to his mouth independently. Henry emphasizes the child should sit upright in a highchair with foot support, and the caregiver should always be near and watchful.

2. Henry recommends continuing breast or bottle while introducing solids.

The “Born to Eat” philosophy is “food before one is just fun.” This mantra may be extended for children with Down syndrome, who are slower to develop. Henry says this means, at this point, solids serve as a tool or exploration and perfecting texture management skills, not to provide all of baby’s nutritional needs.

3. Lastly, start with safe foods outlined in the book.

Henry recommends finger-sized foods (2-3 inch sticks) that they can hold and independently mouth. You can use larger chip size/shape foods as well (not actual chips).

“A good food safety test is if you can push the food into the roof of your mouth with your tongue it is okay. With my daughter we did a lot of avocado, green beans (strings off), bananas and even steak! When she was gumming the steak, we were confident that she couldn’t break a piece off but she definitely enjoyed all the delicious juices (and the nutrition it provided).”

Even children on gtubes can start BLW if they are cleared by their pediatrician.

“I do recommend oral exploration especially during the feeds to make the connection between the mouth, eating and feeling full. If oral feeds aren’t allowed at the time, try mouthing a toy, a rubber spoon/fork, and/or a sensory chewing tool (I like chewy tubes),” Henry says of children with gtubes.

When a child has no oral stimulation for an extended amount of time, it can be a sensory shock when they do finally eat orally. Henry says it’s important to know you child’s current skill level well and work closely with their intervention team.

Baby-led weaning allows our children to explore different textures, flavors, and shapes. Henry says this is the exact approach she’s taken with other oral-motor tools. The two approaches mesh well together, and will serve children well in the long run.

Disclosure: I received no compensation, sponsoring, financial incentive, or other inducements to write this article

“Born to Eat”: Inclusion Starts with Baby’s First Bite

October 25, 2017 by Courtney

Sometimes the biggest barrier to inclusion for individuals with disabilities is their family.

For fear that their child will be hurt, parents can sometimes overcompensate and overprotect.

I’m guilty of this sometimes, even though I try really hard to have similar expectations for Troy as I have for my typical children. It’s human nature, I suppose.

But we must practice what we preach! If I want Troy to be included in our community, then I need to create equity and inclusion within our home.

Family meals are a simple way that I’ve created equity in our home.

Troy is expected to help set the table, sit with his family during meals, and help clear off and clean the table when we’re finished.

Seems like a simple routine, and he’s pretty proficient at this now. But believe me when I say it took YEARS of throwing food and Troy getting up and down to clean up the mess before he mastered this routine.

My approach to this routine all started with Baby Led Weaning. The new book, “Born to Eat,” creates a whole philosophy surrounding BLW and family-centered meals that really piqued my interest as a special needs mom.

May be you’ve heard of it, but don’t think it’s appropriate for children with disabilities. It does seem intimidating at face value:

When child shows readiness for solid foods, parent presents whole food options (that are appropriate in texture for an infant) that the rest of the family is already eating. (no time or money sent on baby food jars, or making your own baby purees)

Parent decides what, when, and where a child eats.

Child decides how much and if he/she wants to eat.

-Cue the worried parent-

Listen, I’ve been there.

We all worry that our child isn’t eating enough, but this philosophy is really about honoring self-regulation and self-reliance in your child. Two attributes that are so important to the success of individuals with Down syndrome.

The best part is “Born To Eat” takes a nonjudgmental approach. You can dive in, or just implement parts of baby-led weaning.

Read Related Post Here: Born to Eat Part 2: Benefits of Baby-Led Weaning for Babies with Feeding Issues

But what about oral motor issues, you ask? It’s true, many babies and children with Down syndrome have feeding issues.

“Born to Eat” author, Wendy Jo Peterson, says you should always consult your pediatrician before starting any solid foods with your child, but a whole foods approach may actually benefit a child with oral-motor sensory issues.

Most feeding experts that Wendy Jo works with feel that empowering a child early on to work on these skills is important, but all agree that this may not be appropriate for all infants all the time.

Every parent has to navigate these waters on their own and seek the support of feeding experts who truly understand a Baby-led feeding approach.

Dr. Katja Rowell is an excellent resource for parents who wish to try a baby-led approach, she was one of “Born To Eat’s” technical readers, and fully supports a BLW approach to feeding infants.

The American Speech-Language and Hearing Association also has a blog post on the benefits of BLW here.

Children often begin to develop picky eating habits early on. “By using varied textures and flavors early on infants (when they are most apt to be accepting to new things) can become acquainted with these flavors and textures.

“Picky eating to a degree is natural,” Wendy Jo explains.

Understanding the Division of Responsibility (coined by Ellyn Satter) can help every parent navigate these waters and learn how their own responses contribute to picky eating.

Read Related Post Here: Our Birth Story: Double the Blessing, Each One of a Kind

In the book, “Born To Eat” shares examples of positive language around the dinner table, and reminds parents that children have the right to what they choose to chew or not.

The less we react the less the table becomes a battleground. Food should not be a battleground or used as punishment or reward.

“Food only becomes an issue when we make it an issue,” author Wendy Jo Peterson explains.

Embracing a family-centered, whole-foods approach is a simple way to start on the path to self-regulation and self-reliance in our children with Down syndrome. Both of these attributes will serve them well in other parts of their life.

In Part 2 of this book review, I’ll talk to a Speech and Language Pathologist who will walk us through the specific benefits of a baby-led weaning approach and how to start on your child on solid foods.