Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

The Value of Down Syndrome

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What’s the value of Down syndrome?

Can you put a price on wasted pain?

Parents dreamt of a “perfect” baby, but are handed the answer to life’s true gain.

What’s the value of Down syndrome?

Can you put a price on perspective?

What often seems like a curse, turns into a blessing in the disguise of beautiful almond shaped eyes.

Related: Open Letter to My Twin Boys, One with Down Syndrome, on Their 5th Birthday

What’s the value of Down syndrome?

Can you put a price on the fight?

You become an expert on medical conditions, laws, and inclusion, that keep you up at night.

What’s the value of Down syndrome?

Can you put a price on community?

Joining this exclusive club, the #luckyfew, dashes fears and helps build such unity.

What’s the value of Down syndrome?

Can you put a price on empathy?

You remember your indifference to difference, and realize how your life before him was empty.

Related: What I Should Have Asked When My Son was Born with Down Syndrome

What’s the value of Down syndrome?

Can you put a price on happiness?

You can’t explain fully how such imperfection could make you happy, but looking at us it’s obvious.

Whats the value of Down Syndrome?

Can you put a price on gratitude?

Thank you Troy for being you. For showing us the way. We love you, little dude!

How are you grateful for Down syndrome? How does your loved one with Down syndrome bring value to your life? Share your story below. 

There is a whole tribe of mamas out there who also feel this way about their little ones.  They too are Thankful For Down Syndrome.  Here are a few other bloggers who will tell you why.

Dawn is a homeschooling power mom of six. Her youngest, Cedar, rocks an extra chromosome.  She began her blog Cedar’s Story to change perceptions of Down syndrome. She shares hundreds of diagnosis stories from around the globe, in hopes to show parents that they are not alone and Down syndrome is beautiful.

Read About Her Thoughts on Thankfulness

Be sure to find her on instagram @CedarStory

 

 

 

 

 

Trista and her beautiful Bernadette are showing the world that they are thankful too Trista blogs over at TristaPark.com and says “I created my blog is to process through the journey. The prenatal diagnosis, the heart surgeries, life in general. It’s been a really good outlet for me to process all the emotions and events especially those of this last year. And through that, I hope to encourage other moms with kiddos with special needs that they are not alone and all the feelings are ok!”

READ HER THANKFUL POST HERE

Be sure to find her on Instagram @mrs_t_park

 

 

 

Joy has a unique perspective here too, she has 2 biological children who BOTH have Down Syndrome.  Both Rudy & Desi show their family joy and that God has a purpose for all of us.  Joy and her family also have a passion for homesteading and you can find all of her inspirational posts at The Beanpost Farmstead.

 

READ HER THANKFUL POST HERE

Find her on Instagram @beanpostfarmstead

 

 

 

And lastly…take a look at these beauties:
https://youtu.be/Nhz7_-xdlJc

 

 

Dear IEP Team

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The following letter is a pre-planned posthumous letter to my son, Troy’s IEP team. The context of the letter can be explained by reading The Immortal Mom: Why I Can Never Die.

Dear IEP Team,

Thank you for your tireless efforts to ensure Troy receives the best educational career. One that prepares him for college or a career and independent living. I wish that I could be there to advocate for my son. To watch as he meets his ambitious IEP goals, fret over stalled progress, marvel at him making new friends and learning grade-level content, and nervously laugh as he gets into a bit of mischief.

Unfortunately, God had other plans. So, I am writing to you in hopes that my educational goals for Troy are carried out in his Individualized Education Plan. When I wrote this I had no idea when or how I might pass, but I knew then that I am my son’s best advocate. If I was there my plans would be much more detailed, but as it stands I hope these broad goals are used as guidance to create an ambitious, supportive, and fluid plan for Troy.

  1. Troy should be present at every IEP meeting, and should start advocating for himself in Middle School.
  2. Always Presume Troy is Competent! It’s the least dangerous assumption.
  3. A COPAA trained advocate should be present at every IEP meeting, and should have full access to Troy’s records.
  4. Troy’s teachers should receive the support they need through set planning time and professional inclusion training courses.
  5. Troy should have a one-on-one aide or his classes should be co-taught. The one-one-one aid or co-teacher should get the same training as his general education teacher.
  6. Troy should learn to read  and understand what he reads using proven methods like Orton-Gillingham.
  7. Troy should learn functional math using proven methods.
  8. Troy should get Speech and OT pushed into his general education classroom throughout his elementary school years; if not, beyond.
  9. Evaluations and assessments should never be used for placement. General education is the least restrictive environment.
  10. Troy should access grade-level content at his own level using appropriate modifications.
  11. Troy should get the behavior supports he needs if behavior problems are preventing him from learning.
  12. Troy should stay in a general education setting at his neighborhood school 70 to 80% of each day.
  13. Troy should stay with his typical twin throughout his educational career.
  14. Troy should not do any cleaning or functional life skills type tasks, unless his typical peers are also doing the tasks.
  15. Troy should work towards a general diploma.
  16. When in doubt, ask yourselves the following question: “How is this specific IEP goal helping Troy be ready for college, career, and independence?”

Thank you for taking my posthumous wishes into consideration. Troy’s future depends on you carrying it out with fidelity. I appreciate all of you!

Sincerely,

Courtney

Troy’s Mom

Changing Perceptions of Down syndrome through the LEND program

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Do you ever wish your child’s doctor, therapist, or other medical professional could spend time with your family to get a more authentic perspective of Down syndrome? Well, you can!

The 15 minutes or hour a week that medical professionals spend with our children in a clinical setting is often dominated by the pathology of Down syndrome. The focus is often on what’s wrong with the child, instead of the child’s strengths and inherent right to access and be included in society.

We volunteered to have these type of professionals shadow us in our home, as well as out in the community. The Leadership Education in Neuro-developmental and related Disabilities (LEND) through Cincinnati Children’s Hospital assigned us to a clinical psychologist and disability self-advocate. You can read about our experience when they visited our home below. This week they came with us to a community event.

Related: Our Family LENDs Perspective to Medical Professionals in Our Home

Our trainees are clinical psychologist, Kaitlyn Eichinger, and self-advocate, Rachel Rice. I love that they have a trainee with a disability participate. Rachel is one of the first self-advocates to be included in the LEND program. It’s a great way for her to continue advocating for herself, and learn how other families advocate for themselves.

Part of the Family Mentor Program requires trainees to think systemically, and communicate the complexity of community
participation by children with developmental disabilities and their families. To give Kaitlyn and Rachel an idea of how we operate in our community, I invited them to our Recreation Center’s Thanksgiving craft day.

I’ll be honest, Troy is a wild card outside of the house. I didn’t have any anxiety with inviting these strangers into our home. That’s because I’m very structured, and Troy knows exactly what to expect. On the other hand, I can’t control what happens outside of our home. Troy does great with routine outings like therapy, library visits, and swim lessons. Every where else can be tricky.

Self-Advocate, Rachel Rice, sits and Clinical Psychologist, Kaitlyn Eichinger, stands as they watch the kids do crafts

Of course, I only got pictures of him behaving well, and actually doing the craft at our local Recreation Center’s “Gobble Fest.” That’s because I was too busy chasing after him to take pictures of him misbehaving. What you don’t see is Troy running for the door every chance he gets, or rolling on the floor (literally). Troy loathes crafts, but he’s actually improved greatly in the past year. At least now he’ll sit for 2-5 minutes and paint.

Related: A Day in the Life of My Son with Down Syndrome

Troy painting a “T” on his turkey

Clinical psychologist, Kaitlyn Eichinger, says it’s important to see Troy in environments that he’s comfortable and uncomfortable in. “As a provider, we only see what happens in the appointment. It is important for us to understand that the parent is the expert. Families are the ones who are with the child everyday living their life. We can make all the recommendations in the world but if its not going to work with the family, we are not actually helping the child or family.  I need to ensure that I understand the family perspective in order to best be able to serve the family and child,” Eichinger explains.

I felt bad that I didn’t get to talk to either Rachel or Kaitlyn very much this time around. Taking three kids out on town doesn’t make for easy conversation. Next time we plan to meet at one of Troy’s scheduled outings, so they can see him in a more controlled setting. Still, I think this experience gave them a glimpse into some of the challenges we face in new situations. All important learning experiences!

There’s LEND Programs in all 50 states. If you’re interested in becoming a Family Mentor click here.

What do you wish your child’s doctor, clinical psychologist, therapist, or other medical professional new about your child? Do you think inviting them into your home might change their perspective? In what way? Share your thoughts below!

 

 

 

 

 

Down Syndrome Advocacy in Rwanda

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“When my son was born my husband and I were so scared. The doctors never said Down syndrome, but you could tell something was wrong. We didn’t know anyone with Down syndrome. We were so worried.”

You could take the above quote from the mouth of just about any of the 220,000 moms giving birth to a child with Down syndrome worldwide each year. But the level of fear and worry changes drastically depending on where you live.

In the densely populated, mostly rural, tiny mountainous country of Rwanda, Edwige Musabe says it’s like Trisomy 21 doesn’t even exist. Her discovery of Down syndrome starts with the quote above; at the 2008 birth of her first born son, Yuhi (pronounced “U-ee”).

Edwige Musabe with her son, Yuhi

“Mental disability is invisible in Rwanda. The government doesn’t talk about these people. They’re not included. The parents don’t want to talk about it, because of the shame. They believe they’re to blame. They’re hidden in plain sight,” Edwige recently told me on FaceTime from her Rwandan home.

Related: Advocates Urge U.S. Congress to Increase Funding for Down Syndrome Research

Edwige, her husband, Gilbert, and their son Yuhi were among the very lucky. “Although we love Rwanda and will stay here, we had lived in Canada for many years and knew we would have to go there to get the answers we desperately sought,” Edwige says. There are at least 400 identified people with Down syndrome living in Rwanda. But with a population of 12 million and the statistic of Trisomy 21 affecting at least 1 in 1,000 births every year, simple math proves that number to be a low estimate.

9-year-old Yuhi is doing well, but his parents can afford to send him to a private school that accepts him. He has not received any early intervention, therapies, or medical care that most Americans with Down syndrome receive for free.

A number of troubling policies and stigmas have led to that low estimate. Rwandans must leave Africa to get an official blood test to confirm the diagnosis. Yuhi was officially diagnosed in Canada. Babies born with heart defects are turned away from hospitals there. Doctors tell them heart operations are reserved for typical children. “Parents can’t afford to send their child to India for heart surgery. Sadly, these children die,” Edwige explains. Early intervention, special education, OT, PT, speech? Nonexistent, unless you can afford it privately.

Read below to find out what you can do to help people with Down syndrome in Rwanda!

But Edwige had seen the possibilities in Canada, and wants better for her countrymen. A natural advocate, she started investigating how to start a national organization to support parents and their children with Down syndrome. She found Down Syndrome International (DSi) through Dr. Mutesa Leon, whom Edwige says is the only doctor in all of Rwanda knowledgeable about Trisomy 21.

Down Syndrome International (DSi) is a non-profit based in the United Kingdom, but serves member organizations in 23 countries including Albania, Bangladesh, Botswana, Colombia, Guatemala, Jamaica, Madagascar, Malawi, Mauritius, Myanmar, Nepal, Nigeria, Pakistan, Peru, Rwanda, Sri Lanka, Tajikistan, Tanzania, Turkey, UAE, Uganda, Zambia, Zimbabwe.

DSi Outreach Coordinator, Nathan Rowe, says they give financial, advocacy, and organizational assistance to mostly grassroots groups. “Some are made of a group of parents who meet regularly and work voluntarily, while some have a few paid staff. Generally organisations are made up of parents and family members or other people who have a personal interest in improving the lives of people with Down syndrome in their country,” Nathan Rowe explains.

Related: Social Media Gives Self-Advocate Voice

Dr. Mutesa Leon and Edwige used a small amount of funds from DSi to start the Rwanda Down Syndrome Organization (RDSO). With the money they hired a permanent secretary, and opened a small office building with a telephone in the capital city of Kigali at the beginning of 2017. “People don’t use social media in Rwanda, so radio and telephone is how you reach the most people; even in the most remote parts of Rwanda. The wealthiest radio stations have allowed us to spread our message for free. We tell listeners to call us, visit us, or go to their nearest hospital for resources, and lots of people are calling,” Edwige explains.

The first World Down Syndrome Day celebrations in Rwanda on March 21, 2017.

A group of about 100 families also met in the capital city for World Down Syndrome Day 2017. “It was an amazing experience. For the first time, we didn’t feel alone. The more people we reach, the more we can advocate, and the louder our voices will be heard” Edwige says.

Edwige says a lot more needs to be done. Donations are important, but Edwige says free expert advice on how to advocate and provide services for their loved ones would be even more affective. “My dream is to have a center for my son Yuhi and all Rwandans living with Down syndrome. They could go there for therapies, education and social interaction. We need experts to teach us about best practices. Dr. Leon is also trying to get doctors to come here to do heart surgeries to save our children,” Edwige explains.

To learn more about the other countries Down Syndrome International supports click here, and to donate to those countries click here.

If you are interested in donating to Rwanda Down Syndrome Organization specifically, please reach out to Edwige Musabe at emusabe.ed@gmail.com.

What have you noticed about the similarities and differences in caring and advocating for people with Down syndrome in different countries? Share your experiences with me below! I’d love to share your story on Inclusion Evolution!

 

 

Social Media Gives Self-Advocates Voice

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David Feit is a Facebook aficionado. The 39-year-old electronics firm assistant with Down syndrome has exactly 5,000 Facebook friends, and uses the social media platform like an open diary. The self-proclaimed “Funcle” (or Fun Uncle for those of you who aren’t in the know) first caught my attention by seeking me out as a friend, and then engaging me in conversation with each “Like.”

“Half of my Facebook friends I went to school with. Some are old friends, and went to school with my sister. Some friends live in my old neighborhood. I have a lot of parents with children with Down syndrome on Facebook” David described when we chatted via phone the other day.

“Funcle,” David Feit with his nephew

I have about 10 teens or adults with Down syndrome that are my Facebook friends. I love seeking out self-advocates to get their perspective on Down syndrome and life in general. Only a few of those friends engage with social media in an truly independent way like David, and fewer still use it to advocate for themselves and others.

Read Related Post Here: Communication is Key to Self-Advocates’ Pursuit of Goals

“I think that David has learned a lot about the world from being able to navigate the web. He learns about people, places and things going on in the world. This is mostly the world of sports and movies, but he also reads about injustices in the world and it really upsets him and we talk about it,” explains his mother, Suzanne Feit. “David has had a lot of practice advocating too. He’s advocating for everyone in the world. There are no boundaries. He will advocate for himself, and everyone else who he thinks is being wronged.”

One of David’s recent post:

It’s obvious when you read David’s posts that they are authentic, and somehow he knows more about Facebook graphics than me. “I roll with technology changes. I’m nothing like my father, who cusses at technology,” laughs David over the phone.  David’s mother started an assistive technology nonprofit when he was 4-years-old, but it was David who taught her how to Facebook. “My mother taught me and then I taught her on Facebook and texting. I’m the king of texting. I take the best picture of my nieces and nephews. I just know how to capture them. They’re my world,” David explains.

Let’s face it, Facebook and other social media platforms are here to stay. Facebook has led to the fall in power of tyrannical leaders in some countries, as well as a political groundswell in our own. It can provide a new world of independence and advocacy for people with disabilities.

Read Related Post Here: Self-Advocate Uses Fame to Spread Message of Inclusion

Especially individuals with Down syndrome, who can sometimes struggle with intelligibility. Self-advocate, John Franklin Stephens, used his Facebook account to share a testimony he gave to Congress pleading for increased funding of Down syndrome research. The thought-provoking video has been viewed millions of times, and is now spreading through the news media and social media in countries where Down syndrome is being effectively eliminated through prenatal testing. Read here.

https://www.youtube.com/watch?v=yQJEoRhkapw

But what about  parents’ legitimate fears that social media may be misused or unsavory characters may take advantage of their child?

Advocate and parent of a teen with Down syndrome, Jawanda Mast, says those are fears all parents must face. “Our 17-year-old daughter, Rachel, wanted snap for a while and her dad helped her get that set up a few months ago. She does a lot of that on her own and has really enjoyed being able to connect to her friends. We watch her social media to be sure she is being responsible and others aren’t trying to take advantage of her. Facebook is not cool with the teenage crowd, but if she does want it we can help her with it,” Jawanda explains.

“What’s going to work on literacy more than being on the web and writing to people. I trust the universe to help and don’t live in fear. I do monitor his comments on Facebook when I see something that is inappropriate. I tell him that he must be appropriate and we work hard to help him understand that he is responsible for his actions and his words. Not much unlike the rest of the world right now, don’t you think?” David’s mom, Suzanne Feit says.

Read Related Post Here: Independence for People With Down Syndrome is Just a Click Away

My own 5-year-old son, Troy, is often better at navigating the iPad than I am. Although I limit his screen time, I realize that it’s that very same technology that will likely some day help him live independently like David. “I would encourage people with Down syndrome to have a Facebook, because you can communicate with friends and family about how blessed you feel to have them in your life,” David says.

Do you allow your child with Down syndrome to use social media or technology? How has it made them more independent or led to inclusion? How do you monitor their use of technology? I’d love to hear your thoughts below.