Including the Visible and Invisible

This week I tweeted Maureen Wallace’s article and received a big response.

It spoke to a common parent concern:

That their child will be misjudged because of their diagnosis.

In 2008, my colleagues and I spoke the topic of visible vs invisible disorders and behavior management at the Society of Developmental and Behavioral Pediatrics Annual Conference. The situation Wallace highlights in her article could have easily been an illustration in our presentation. The instructors at the gymnastics studio were responding with bias to the way her son looks, not his ability.

Some diagnoses, like Down syndrome, come with visual signs or symptoms. These are things the general public may pick up on by looking at a person. Other diagnoses, like autism, dyslexia, or Tourette syndrome (TS), can’t be seen on a person’s face. My oldest son* has TS. Like the women in Wallace’s story, a few have responded to him based on their misconception of the diagnosis.

When we perceive our child has been slighted a wave of emotion pours over us – anger, sadness, righteous indignation. The Mama Bear in us rises up to protect, intimidate, and if necessary attack. Instead, these feelings should give us reason to pause. This is why I appreciate Wallace’s approach. Without aggressively pointing out personal ignorance, she tries to show how well her son fits in with the group. Sometimes people remain blind to their own prejudice and for the well-being of her children, Wallace removed them from the program. Thankfully, this isn’t always the result.

Several years ago my son started on a new soccer team and his tics were flaring up. I approached the coach on the first OLYMPUS DIGITAL CAMERAnight of practice to let him know about the diagnosis of TS and what he might see during practice and games. The coach’s first question was, “Is he going to bother the other players?”

Like many other parents before me I wanted to react. Instead, I kept calm and smiled. I offered to speak with the team and other parents if his tics became disruptive. I assured him that my son loved soccer and would be doing his best to focus on the game. Believe me, my husband and friends got an earful.

While I thought some very negative things about the coach’s initial response, my son had a great year. I hope the experience paved the way for others in the league.

As a community we need to decide:

If our goals are acceptance and inclusive communities, what are effective ways of dealing with misconception?

Have you successfully engaged others about your child’s diagnosis? If so, please share!

*My son’s name is omitted or changed on the blog for privacy.


When to Start Speech Therapy for Children with Down Syndrome

I am asked frequently, “When should my child start speech therapy?” This is a great question! Usually parents are asking, “Is my child old enough to improve how they sound when they talk?”

Many times infants or young children with Down syndrome (DS) will start language therapy at before speech therapy. There is a difference between the two types of therapy, although we commonly refer to visits with a speech-language pathologist as “speech therapy.”

Children with DS typically have delays acquiring speech sounds and words (Stoel Gammon, 2001). The process of gaining sounds in children with DS goes like this*:

  • Early infancy: cooing
  • Mid to late 1st year: babbling
  • 18 months: average 1st word
  • 36 months: combining words into phrases, using common phrases with multiple words like, “I did it!” or “1, 2, 3…go!”

Providing children with DS language-rich experiences during the early years of life will not only support learning, but also speech development. Activities that nurture communication include:

  • Reading books together. Don’t worry about reading every word on the page. Take time to look at the pictures with your
    Attribution: Nationaal Archief/Willem van de Poll

    Attribution: Nationaal Archief/Willem van de Poll

    child. Comment and let them show you what’s interesting to them.

  • Engaging in turn-taking games. Roll a ball back and forth. Play peek-a-boo. Alternate between peeking and allow your child to “peek” too.
  • Playing with toys that start/stop manually like rolling cars down a ramp or a jack-in-the box. This allows natural opportunity for you each to take turns as you play together.
  • Singing songs with hand motions like Itsy Bitsy Spider or finger plays such as “Open, Shut Them.
  • Being silly together. Children pay attention when adults behave in ways that are unexpected. In my sessions I place toys on my head like a hat and then say, “Ah – ah – ah – Chooooooo!” sneezing them into my lap. It’s usually good for a laugh AND the child tries to imitate my actions and sounds.

While clear speech is important, it’s equally important to allow opportunity (and time) for sounds to develop. Therapy goals targeting speech sounds and clarity are appropriate when:

  • The child has a variety of spoken words or approximations
  • He/she consistently tries to imitate sounds you make

Most children with DS are in preschool or kindergarten when goals for articulation are established. Until then, therapy focuses on the child’s ability to understand and use words and gestures to communicate.

Three of my favorite resources for early communication are:

1. It Takes Two to Talk from Hanen

2. Communicating Partners, by Dr. James McDonald

3. See and Learn Language and Reading from Down Syndrome Education International

When did your child’s therapy start to focus on speech sounds? I’d love for you to share your experience in the comments section.

*Ages represented are averages for children with DS as reported in research literature. The range of acquiring first words in children with DS is very large!


Sister Spying: On a Date (!!!)

Do you have a sibling? Have you liked every boyfriend/girlfriend they’ve had? That’s where we need to start. Hold that thought. 

A couple of weeks ago my husband, sons, and I were waiting for a table at our local pizza joint. Scanning the room my eyes stopped at a cute couple in one of the booths. That’s when I realized the couple was my sister April and her new boyfriend (!!!). She didn’t notice me and I was in the perfect place to spy on her. This is what I noticed [spied]:

  • They interacted naturally and looked really happy to be together.
  • They worked together to figure out payment and tip doing something on the phone.
  • He paid. Credit. 
  • My sister took the leftover boxed pizza to the bar, explained something, and handed it to the bar tender. 
  • They gathered their things and started walking our way.

My husband asked me if I was going to give them a hard time. Me? Bug my sister? Never!

…Okay, not today

I stopped my sister and gave her a hug. “Is this _____(we’ll call him “The Boyfriend”)?” The Boyfriend introduced himself and extended his hand to shake. He listened as introductions were made and said it was nice to meet us. Then April let me know they were in a hurry to catch a movie next door but she was glad to see us. 

I’m not sure who was beaming more: Me or April.

April is 26 and has Down syndrome. Seeing her out on a date is kind of a big deal. 

Later that week we went to my parents’ house for dinner. I retold my accidental spy mission to April and our mom. Here are additional tidbits I didn’t know about:

  • They Face Timed our mother at the end of dinner to decide on tip. Very clever. (BTW, she has an iPhone and I don’t)
  • April and The Boyfriend wanted to save the pizza, but knew they couldn’t take it into the movie theater. She asked the bartender to save it for them and they picked it up after the movie was over (genius!). 

Later, I asked my mom jokingly, “You mean he doesn’t call her a ‘fat bitch’?” An ex kept whispering this to April during a family dinner years ago. Yes. Kind of blows that “everyone with Down syndrome is so kind and happy” out of the water. 

Back to my original question: Have you liked every one of your sibling’s boy/girl friends?

This is April’s 3rd or 4th boyfriend since early high school. While the guys she’s dated have been nice enough, April + those guys weren’t a good match. I totally get that. I also know this relationship is new and may not last, but I’m excited anyway.

After reflecting on why I’m so happy for April it’s this:

Knowing someone you love is respected, listened to, and cared for is one of the best feelings in the world.


April and The Boyfriend – Shared with her permission after she texted it to me


#thisistheface: Ending the stigma of mental illness

It started with the death of Robin Williams yesterday. A shock rolled through social media as we learned of his death. In reaction to the many comments misunderstanding depression I posted this on my private Facebook page this morning:

I live with depression.
I ride the waves as they come. I can’t control them anymore than I control the tides.
So I’m learning to surf. I used to fear the swell. Now I’m equipped: Exercise, meds (no shame), and therapy (when needed).
Friends who love. They bring me a raft when the white water takes me down. We float together.
Floating is okay too. Because riding and floating are living.
Know someone learning to surf the waves of depression?
Now you do.

Now with a shock is a spark. A spark of hope setting into motion something really great. My dear friend Cory has anxiety and a son diagnosed with bipolar disorder. She posted a selfie with the phrase “This is the face of anxiety” and asked me to help her start a campaign to end the stigma of mental illness.

I can help because I’m finally ready. Here’s my post in response.

Mental illness can affect anyone.  A life can be full and whole and beautiful and still be entwined with mental illness. Support is key. If you are at a place in life where sharing your story is safe, please consider posting a selfie on Facebook, Twitter, or Instagram with the hashtag #thisistheface. Together our sparks can ignite a fire.