Just Troy Archives – Page 4 of 4

July 31, 2017July 31, 2017

Teaching Your Child with Down Syndrome to Read

Of all my children, I never would have guessed that the family book worm would be my child with Down syndrome. Troy has a special devotion to certain books. The sound of the words, the clues in each picture, the feel of the book, even the taste (LOL). He simply adores books and reading!

We all know that literacy opens doors to a life of learning and opportunities. Learning to read positively impacts learning in all subject areas, provides access to the curriculum, improves speech, and is essential to an independent life. But just a generation ago, it was believed children with Down syndrome could not learn to read.

Now we know that even the very youngest children with Down syndrome can learn literacy skills and almost all can be taught to read at a level essential for independently living. So, where do we start?

I use a combination of reading for pleasure with all my children, and some more focused literacy building developed specifically for children with Down syndrome. By the way, I use these specially developed programs for my typical kids too.

Troy really enjoys Orange County’s Online Learning Program, and it’s completely free with a guest login. You print off books that your child might enjoy. Watch Troy read his favorite LP book, “Sports.”

Like most early literacy programs, this approach focuses on acquiring high interest and common sight words. Children with Down syndrome excel at the visual memory skills needed for reading sight words.

Obviously, Troy just memorized this book, but he also shows comprehension later with a matching game. Watch below.

The beauty of this approach is that you can start even before your child is verbal. They can match picture to picture, they can use sign language, or you can read and they can point to the words.

Sue Buckley’s Down Syndrome Education Online uses a similar approach. Both programs start with a whole word approach, build vocabulary through pictures, memorize sight words and use them in sentences, and eventually introduce phonics and sound blends.

It may seem intimidating to teach your child with Down syndrome to read, but really there’s only 5 simple steps:

Read: (a book from either LP Online or DSE Online)
Match: either picture to picture or word to word, which I did with Troy from about 2 to 4-years-old
Select: give you child a choice between 2 pictures or words and ask them to choose the right picture or word
Name: hold flash cards of either pictures or words and have your child name or sign them
Check: for comprehension by matching picture to word, draw a line from picture to word, or make generalizations in the real world (example: read the zoo book, then visit the zoo)

After doing the Easy Readers with Troy for the past three years, we’re now slowly moving on to building sentences. Troy has great sentence awareness. He can show me the front and back cover, and even say the author and illustrator of his favorite books.

Now I’m trying to get Troy interested in building sentences by creating his own book, which his typical twin brother already loves.

Buy some blank books at Target in the dollar section

I found these awesome blank books in the dollar section of Target. Then we print out pictures of a favorite topic like superheroes, Paw Patrol, or family members.

After gluing a picture on a page we come up with a simple sentence to correspond with the picture. I write the sentence on a strip of paper and cut each individual word. The boys glue on each word in the correct order and we add punctuation at the end. Then we read our books.

This is a hard skill for Troy, because he can’t verbalize a novel sentence by himself, or sit through the creation of an entire book. But we’re starting small by giving him a choice between 2 or 3 pictures in one sitting, and helping him come up with the sentence. The point is to keep him interested, while understanding the structure of a sentence.

My twin boys falling asleep to a good book each night

I love this approach and have used both program’s apps on our iPad. Troy loves them too. The apps include: VisualLearn, Special Words, and See and Learn.

If your child is past this stage check out my dear friend’s blog, Sassy Southern Gal, for advice on more advanced readers.

What works for you and your child, and what’s challenging when it comes to literacy? Let me know below.

July 3, 2017June 27, 2018

This Land is Made For My Son with Down Syndrome, Too

The Fourth of July is a time of reflection of our nation’s past and present. As a special needs mom and former history teacher, I often marvel at how far our nation has come in one generation as it relate to the human rights of individuals with disabilities.

Surely, when Thomas Jefferson wrote we have the right to “life, liberty and pursuit of happiness” in the Declaration of Independence he wasn’t thinking of people like my son, Troy, who has Down syndrome. Still, this document and our nation’s constitution has been used as proof that my son deserves a life of choice and self-determination with needed supports.

When I was born in 1982, individuals with Down syndrome had a life expectancy of 25-years-old. Many still lived in neglected and abusive institutions, were denied life saving surgeries, and underwent forced sterilizations as approved by the Supreme Court in 1927.

One generation later, in 2012, when my son, Troy, was born life expectancy more than doubled to 60-years-old. Many laws contributed to this amazing feat, and one of the most important was Medicaid. The social program was a bipartisan solution to healthcare for the poor, and was signed into law by President Lyndon Johnson in 1965.

In 1981, Ronald Reagan approved the Community and Home Based Waiver Provision within Medicaid. The waivers are rooted in the idea that individuals with disabilities are happier, safer, and more free in their home and community. Not to mention, it’s a cheaper alternative to institutionalizing individuals with disabilities.

The healthcare proposal that recently passed the House of Representatives and is currently in the Senate would cut Medicaid by $834 billion dollars over the next decade. Half of those cuts would come from “per capita based caps.” This means, instead of a federal and state partnership, the federal government would cap the amount of money they give to states to a fixed amount. Cash strapped states would likely cut Community and Home Based programs first.

Troy playing baseball with his typical peers

In a time of growing distrust of government, you need to know that the federal government has made a huge positive impact on the lives of our nation’s most vulnerable citizens. My son is proof of this progress. At almost 5-years-old, Troy, can do everything his neuro-typical twin brother can do. He’s potty trained just like his typical twin, can read and sound out simple sentences like most kids his age, and plays on the same tee ball team as his typical peers.

What you may not realize is the supports he receives during early intervention and in his inclusive preschool (like PT, OT, and speech) are partially funded through Medicaid. When my son reaches adulthood Medicaid provides job training, transportation, and independent living supports through local and state run programs like Project Search. At birth we put our son on Ohio’s Medicaid waiver waitlist for these adult supports and services. As Medicaid stands right now, that waitlist is 18-25 years long. What will happen if these cuts are approved? Likely we’ll never see the end of the waitlist; if we do, the services will likely not be what they are today.

Ohio Governor John Kasich opposes the Senate bill and in a letter with three other GOP governors stated: “It calls into question coverage for the vulnerable and fails to provide the necessary resources to ensure that no one is left out, while shifting significant costs to the states.” Over 700,000 Ohioans would be impacted by Medicaid cuts if approved.

Troy and I met with Senator Rob Portman’s staff in June. We shared our Medicaid story, but staffers gave us no indication of how Senator Portman felt about the disability community. After the Senate delayed the bill, Senator Portman came out in opposition to it, citing the opioid crisis here in Ohio. For sure, drug treatment and mental health will also be negatively impacted, but the disability community must not be ignored. Call Senator Portman or your own Senators today at (202) 224-3121 , remind them how far we’ve come as a nation in the treatment of our most vunerable citizens. Tell them to save Medicaid, and vote NO to any cuts or caps on the program.

May 22, 2017May 21, 2017

“Wonder” Book Review: How Loving Someone with a Visible Disability Forces You to Stand Out

The old adage “don’t judge a book by its cover” never resonates with me more than after I had Troy, my son with Down syndrome.

I’ll be honest, I’m a conformist. A follower even. I’ve blended my whole life. I was never the richest kid, or the smartest kid, or the prettiest either.

But what happens when you can’t blend, because you were born to stand out?

My Troy stands out. His visible disability brings instant judgement wherever we go:

From fellow moms: “Can he climb those playground stairs?”

From other kids: “Troy, let me help you with that.”

From his teachers: “I am shocked that he’s potty trained and knows all his letter sounds! But we’re still not sure he can keep up in higher grades. May be you should consider a resource room.”

Even from sweet grandmothers: “Oh, those children are always so happy. Your son is an angel sent from heaven!”

These comments are all well-meaning, which is what makes them sometimes hurt the most.

In my experience, I can more easily ignore and shut out the uneducated jerk who treats Troy like the plague.

It’s the good intentioned comments that I receive on a daily basis that weighs me down. I at once want to hug them for their desire to “want what’s best for Troy,” and punch them for instantly and subconsciously assuming “he can’t.”

Their comments often catch me off guard, because 99.9% of the time ALL I SEE IS TROY—NOT Down syndrome.

It’s a constant internal struggle.

That’s why I simply adore a recent pick by my beloved book club called “Wonder” by Raquel J. Palacio.

It’s a pre-teen book (one of my personal fav book genres) about a boy named August (“Auggie”), who has a severe facial deformity. At 10-years-old he leaves the decade-long safety of his homeschooling career to enter a private middle school.

You can imagine the drama that ensues.

This thought-provoking, witty, and eloquently written book will have you reeling, especially if you’re directly connected to someone with a visible disability or just different.

Auggie is introspective, vulnerable, and hilarious.

The book starts out with Auggie declaring “I won’t describe what I look like. Whatever you’re thinking, it’s probably worse.”

He’s not a novel device or token disabled kid. Neither are the other characters, which I found especially fascinating.

There’s characters in the novel that never come to accept Auggie, or see him as anything other than “other.” But there’s also truly inspiring friends, who are amazing because they learn to see Auggie for who he truly is: a smart, funny kid.

I cried while reading the perspective of Auggie’s parents. They at once want to shield their child from this brutal world, but also push him to reach his highest potential. Any parent can find commonality in their story.

And the perspective of Auggie’s sister, Olivia (“Via”) particularly stuck with me.

I worry about the impact of Troy’s disability on my typical children, as much as I worry about Troy.

Will they resent Troy, or my husband and I for the extra care that Troy sometimes needs? Will they be bullied, because their brother is different? Will this visible disability ruin their life?

Via taught me to take a deep breath, and embrace the mess that is life.

Yes, she does some time resent her situation (don’t we all at one time or another), but she’s the only character who somehow inherently embraces her brother and pushes him to live life like no one else.

Get this book! Have kids you know read it. You won’t be disappointed!

The movie version, starring Julia Roberts, Jacob Tremblay, and Owen Wilson, was supposed to come out this past February. It has been postponed to fall of 2017.

I “wonder” if viewers will be able to embrace this movie, understand it’s impact, and not judge a book by its cover.

Category: Just Troy