This Land was Made for My Son with a Disability, Too

The Fourth of July is a time of reflection of our nation’s past and present. As a mom to a child with a disability 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 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 was born life expectancy more than doubled to 60-years-old. Many laws contributed to this amazing feat including Medicaid (especially the community and home-based waivers program), the Americans with Disabilities Act (ADA), and Individuals with Disabilities Education Act (IDEA).

Still, forward progress has often been an evolution, rather than a revolution of inclusion for people with disabilities. At times like now, there seems to even be a back-pedaling of progress. With threats seeming to come from every direction, it’s hard not to lose heart. It’s also hard to know where to focus your energy. You’ve likely heard that advocacy is a marathon, not a sprint. Check out some of the issues facing our community below, and pick up the phone, write an email, or give a speech. Small acts from us all can lead to big change and forward progress.

Inclusion in schools for Students with Intellectual Disabilities: federal reports show that only 15% of students with intellectual disabilities are included in general education for the majority of their day. The Supreme Court of the United States, in the Endrew F. case, demanded a higher expectations for our students with disabilities, but some schools are still segregating them. Join this Facebook group that is teaching parents how to address their local school board to advocate for inclusion in general education (click here).
Achieving a Better Life Experience (ABLE) Act: This law allows people with developmental disabilities to save above the $2,000 a month threshold without jeopardizing their government benefits. Still, disability advocates say more people need to open ABLE accounts or the program will be in jeopardy. That’s why advocates are asking people to urge their Congressmen to pass the ABLE Age Adjustment Act to increase the age of disability onset. Find out more here.
Ending Sub-minimum Wages: Most people with disabilities want to work, but more than 80% are unemployed. Those that do work are often segregated in sheltered workshops, earning pennies on the dollar. The Workforce Innovation Opportunity Act (WIOA) hopes to ensure all people with disabilities earn at least the minimum wage, while creating a systematic approach to ending sheltered workshops. Send a letter to your representative supporting this bill using the National Down Syndrome Congress’ pre-formatted form. Click here.

Troy playing baseball with his typical peers

In a time of growing distrust of government, it’s important to realize that federal policies like the ones above have made a big difference in the lives of the disabled.

It’s important to not become complacent. Let’s fight to continue the progress made by so many.

September 23, 2018September 23, 2018

A Letter to the Teacher of My Son with Down Syndrome

Dear Teacher,

Tis the season for organizing classrooms, lesson planning, and memorizing new names. When I was a teacher, this time of year brought a mixture of excitement and trepidation. Those emotions remain the same now that I’m a parent to a child with Down syndrome.

Instead of fearing that I would be ill-equipped to deal with a whole new group of students with different needs, I now dread that my son’s teacher will fear Down syndrome and what it means for his or her classroom.

I know, from personal experience, that even a Master’s in Education does not always fully prepare teachers to meet the needs of all learners. Teacher training can sometimes be a one-size fits all approach, until the student-teacher is thrown to the wolves (I mean, students LOL). But here’s the most important thing you need to know to meet the needs of my son who has Down syndrome:

You don’t need a Master’s in Education to care and have an open-mind. Those two characteristics alone can lead to my child’s (and every other child’s) success in your classroom.

5 Things to Remember When Teaching a Student with an Intellectual Disability:

1. He’s more alike than different:

Troy (left) with his typical twin brother, Hunter (right)

Imagine if the color of your eyes was the determining factor of whether you were cut out to be a teacher. Not cool, right? Troy has a right to the same educational opportunities as his typical twin brother. But the instant a teacher looks at my two boys side-by-side, many have already made a judgement that Troy just can’t cut it in a regular class.

“Different” is all about perspective. To you, my son may not fit the typical model-student mold, but to me he’s just as inquisitive and bright as his typical twin brother. Stop looking at those gorgeous almond-shaped eyes and his cute toddler-like stature; this kid wants to learn. Expect that he wants to act and learn like his typical peers, and you may be surprised at what he can achieve.

2. He needs you to believe in the power of “yet”

Our mindset determines the way we see the world. I want Troy’s teachers to have a “Growth Mindset.” This is the power of believing Troy can learn and improve. I’m not delusional. I understand my son has an intellectual disability, and will likely not “keep up” with his typical twin brother. But with a growth mindset it’s ok if he doesn’t keep up, because he has the power of “yet.”

He may not read and write when his typical peers do, but that doesn’t mean he’ll never read and write. It also doesn’t mean he deserves low expectations and subpar educational experiences. Whenever you feel the urge to say: “Troy can’t _______,” instead say “Troy can’t __________ YET.” This will change your entire perspective about Down syndrome and what my son can achieve.

3. He understands when he’s being segregated

Even with 40 years of federal law and research to back up full inclusion for students with intellectual disabilities, schools continue to segregate students like my son in “specialized” classes. Teachers and administrators say this is what’s best for these “special” students, but the research proves it’s not.

Listen, I understand that inclusion is hard and scary. But my son doesn’t deserve the path of least resistance. He’s smart enough to know that he’s being segregated from his typical peers, and he’ll live up to whatever expectations you set (low or high). We must prepare him for life, and as far as I know there’s no “special” grocery shops, apartments, or jobs when he graduates.

4. His typical peers have a lot to gain with his presence

Many teachers argue that having a student with intellectual disability in their class will be detrimental to their typical students. I disagree wholeheartedly! In fact, research shows that typical student achievement either stays the same or increases with the presence of diverse-ability students. The reason is simple and has been known for generations: The best way to understand a concept is to teach it.

What a wonderful opportunity to teach empathy, and increase achievement levels of all your students. In a meaningful inclusive classroom, all students feel valued for who they are. High achieving students can reinforce what they’ve learned by teaching others, and students like my son can teach those same students that life is about more than just high grades and test scores.

5. More than anything, he needs an open-minded teacher

You can know all the latest teaching strategies to optimize an inclusive classroom: Universal Design for Learning, Process Oriented Guided Inquiry Lessons, Reality Pedagogy, etc. But if you don’t have an open-mind none of these fancy strategies will work. I’d rather have a teacher who’s clueless about all of the above, but truly accepts Troy and believes he can learn than the smartest teacher around who thinks my son is helpless.

It’s up to you to teach other students that my son’s disability is not to be feared. They’ll be watching you!

And remember, the parent of students with disabilities want their child’s teacher to succeed. Come to us for advice. We are the expert of our child, and we can be an invaluable asset to your classroom success. We appreciate you!

We know you may be scared, but our child and your students are worth it! Take the challenge and be the change that’s needed in this world!

With Much Appreciation,

The Parent of a Child Who Wants to be Included

August 16, 2018September 20, 2019

Everything is Still Possible

In three short weeks my first born sons’ will start kindergarten. As I prepare to send them out into the world, I am convinced that EVERYTHING IS STILL POSSIBLE.

Isn’t that what kindergarten is about, after all? By their very nature, kindergarteners are self-confident, adaptable, curious, eager to learn, and for them everything is still possible. Look at those boys! Both are the very essence of what a kindergartner should be. What a refreshing way to live!

Read Related Post: Enjoying the Quiet Before the Storm

When I became pregnant with my twin boys I had the same optimistic outlook, but 35.5 weeks later as I held them it seemed none of my dreams were still possible. As my sons’ birth story unfolded, I allowed the world’s perception of an intellectual disability envelope me. All the can nots and will nots strangled me in that moment. I could not see past Troy’s disability. I had forgotten all I had learned from dear Sister Immaculata in kindergarten: that everything is still possible.

It’s taken 5 years of preparation to believe everything truly is still possible: That’s 3 preschool teachers, 3 pediatricians, 5 specialists, 23 therapists, 208 hours of therapy to learn to walk, 520 hours to learn to write letters and cut with scissors, 520 hours to learn to jump and ride a trike, 650 hours to learn to speak in short phrases, 850 hours of advocacy training, 2,737.5 hours to potty train (this is probably an underestimate), and countless sleepless nights.

You might wonder how I could believe this, against these odds. But it’s these very odds that make me believe everything is still possible. Troy is amazing in his tenacity, adaptability, and hard work, and he comes by it honestly. Although Troy has been at the center of this hard work, our whole family has been there every step of the way. Our family has always loved a good challenge. We will beat the odds, or learn and grow trying.

Read Related Post: Class of 2031: Yes, My Son with Down Syndrome Can Go to College

So, bring it on kindergarten! We’ve done our homework; we’re ready for you. I started this blog knowing this time would come fast. I made a bet then that my twin sons would graduate together in the year 2031, and both would have the opportunity to go to college. I’ve learned since that this is not only possible, but is happening right now. There’s over 260 college programs for students with intellectual disabilities. Self-advocates with Down syndrome are multi-million dollar business owners, international speakers, models, reality TV stars, athletes, husbands, wives, and loved family members.

I am confident now that my very unique twins can strive for the same things in life: success, independence, security, happiness, and most of all love. Everything is still possible!

School’s back! Learn how to make this catchy bio for your child’s teachers here.

June 20, 2018June 21, 2018

Class of 2031: Yes, My Son with Down Syndrome Can Go to College

With over 260 college options, the future is looking bright for students with intellectual disabilities.

I can see the headline now: “Twin Brothers Graduate Side-by-Side, Accepted at the Same College”.

I can see my precious boys, now men, stepping onto the platform hand-in-hand, receiving their diploma’s together.

The year is 2031, and it’s the culmination of years of hard work, as well as the beginning of years of hard work to come.

But why is this even news, you ask. After all, twins graduate side-by-side every spring.

What if I told you my twin boys are so unique that the odds of recreating another birth like them is 14 in a million! I know, I know…I should play the lottery.

But this alone isn’t even newsworthy.

The real headliner here is that one boy is neuro-typical, while the other has Down syndrome.

And the truth is, no one expects much out of the latter. No one, except me!

My twin boys will begin kindergarten in a few weeks, and I’m already plotting how to send them to college. Of course, like most parents, my husband and I have done the dutiful task of setting up a 529 College savings plan for our typical son and daughter.

But doing the same for Troy, who has Down syndrome, would put his future SSI Medicaid benefits at risk. Luckily for Troy, the Achieve a Better Life Experience (ABLE) Act, was just passed in 2014, and now he can save for college too without losing much needed government assistance. Read more about ABLE here.

So, now to investigate college programs.

I know, we’re 14 years out…What can I say? I’m a bit of an obsessive planner. Ok, ok I’m neurotic. I can’t help it. But my investigation into colleges for my son has amazed me!

Did you know there are over 260 college options for Troy, and other people with intellectual disabilities? And he can receive pell grants, work study money, and scholarships to help pay the tuition.

The evolution to better higher education opportunities for people with intellectual disabilities really took off with the reauthorization of the Higher Education Opportunity Act of 2008. But keep your eyes and ears peeled (and your legislator on speed dial), because the act is supposed to be reauthorized again THIS YEAR!!! We can’t go backwards.

And on closer look, I noticed that these college programs are not created equal.

They range from Syracruse’s InclusiveU Program (learn more here), which boasts a 4-year certification program where students take the same exact classes as their neuro-typical peers and live with those peers too….to others where students are completely segregated and only learn life skills. Unfortunately, the vast majority of these college programs fall into the latter category.

Now, I’m not complaining. At least higher education, any higher education, exists for my son. But I’m not going to fight for 13 years for my son to be included with his typical twin brother in primary and secondary education, just to turn around and fight again in higher education.

We need to be advocating for more programs like InclusiveU. We also need the Higher Education Opportunity Act passed with more, not less funds for inclusive higher education.

My hope is by the time Troy and Hunter graduate high school in 2031, most higher education programs will be fully inclusive and lead to competitive paying jobs.

Visit thinkcollege.net to find out what college programs are in your state, and start advocating for full inclusion.

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Thank you for your response. ✨

June 5, 2018June 5, 2018

Music Therapy for Children with Down Syndrome

My 5-year-old son singing Twinkle Twinkle Little Star, while he plays the ukulele. It’s music to my ears! With a dual-diagnosis of Down syndrome and Childhood Apraxia of Speech Troy struggles to speak intelligibly, but somehow he speaks much more clearly while singing.

Speech therapy twice a week, and total speech immersion in an inclusive preschool class has helped Troy make great gains in speech intelligibility. But it’s his love of music and singing that has continued to show me where we should place our efforts.

Music therapy can seem frivolous, but research supports connections between speech and singing, rhythm and motor behavior, memory for song and memory for academic material. Music is processed by a different area of the brain than speech and languages, so a child may be able to more easily absorb information and skills presented with music.

“Music organizes the brain. The child strums the instrument with his right hand, which stimulates the left side of the brain. The left side of the brain is the center of language and speech, which is one reason Troy can speak more clearly,” explains my son’s Music Therapist, Kendra Carson. Kendra has been a certified practicing Music Therapist for 16 years, and has worked with all ages.

Read related post here: Teaching Your Child with Down Syndrome to Read

Kendra says music therapy isn’t about music production. “Music is just the tool I use as a therapist to see what Troy’s non-musical needs are and facilitate non-musical goals,” Kendra says. She incorporates Troy’s speech goals into each session, and many songs like “Old McDonald” incorporate sounds and words that Troy struggles with as a child diagnosed with Childhood Apraxia of Speech.

The American Music Therapy Association defines music therapy as “an established health profession in which music is used within a therapeutic relationship to address physical, emotional, cognitive, and social needs of individuals. After assessing the strengths and needs of each client, the qualified music therapist provides the indicated treatment including creating, singing, moving to, and/or listening to music.”

Even if you don’t have the time or money for private music therapy, you can incorporate music into your daily life to benefit your loved one with Down syndrome. Kendra taught me how to put familiar books to music. For example, Troy has memorized the book Brown Bear, Brown Bear. When we sing the words in the book to the tune of Twinkle, Twinkle, Little Start he can read the book more fluidly. I’ve also helped my children learn my phone number and our address by putting them two easy tunes.

Read Related Post Here: Travels of a Posterior Walker

This doting sister shown below shows off her natural music therapy skills in a social media video that’s gone viral. She shares the joy of music to help her toddler brother with Down syndrome learn to speak his first words. Check it out!

As a parent of child with Down syndrome, I understand that fitting one more therapy in can seem impossible. But many music therapists will come to you, and many local Down syndrome affiliates or county developmental disability boards offer scholarships to families for therapies and other activities.

You can find out more about Music Therapy and find a certified therapist in your area HERE. Does your loved one with Down syndrome love music? How have you facilitated this love of music to help him or her in other areas of life? Share your story with me below.