Category: Advocacy

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Deportation Orders Would Leave U.S. Teen with Down Syndrome Without Mother

UPDATED as of Friday, November 24th at 5p.m.: Sami’s Sister says their mother, Fatiha has been granted a 30-day extension so the Immigration and Customs Enforcement’s acting director for our district can review the case. This means phone calls to your Congressman are even more important. Find your Congressman’s phone number and a script of what to say in the link below.

This Thanksgiving may be the last one for 15-year-old Sami with his mother’s cooking, love, and complete devotion. After 21 years of living in the United States Sami’s mom, Fatiha Elgharib, is set to be deported back to Morocco on Monday.

“Sami doesn’t understand what’s going on. I keep telling him I may have to go away, but he sees me here with him, taking care of him. He has no concept of time or the future, and what impact that has on him,” explains Fatiha Elgarib. The current U.S. Administration’s “silent raids” have also not taken into consideration the negative impact and hidden cost of pulling families, like Sami’s, away from each other.

Like many people with Down Syndrome, Sami has multiple severe health conditions, including congenital heart malformation, severe sleep apnea, and hypothyroidism. Sami is nonverbal, has had multiple surgeries, and requires round-the-clock care. Fatiha is his primary caregiver.

Find out how you can help Sami below!

If You Live in Ohio, You Can Call Representative Mike Turner and Asked Him to Stop Fatiha’s Deportation. Click Here to Find Out How to Contact your Congressman.

Although I’ve heard about recent controversial deportation stories, Fatiha’s really hit home for me. She has a son with Down syndrome, and lives in the same Ohio city as I do. When I learned about her fight to stay in America, I knew I had to meet her and her son. I visited their home the day before Thanksgiving. Fatiha was visibly shaken and a had permanent expression of worry on her face.

Fatiha, her husband and two daughter’s came to America on a work visa in 1996, and have been trying to gain legal residence ever since. You can learn more about the legal battle and how things went downhill after the terror attacks of 9/11 here. “There’s terrible poverty in Morocco; no chance to find a job. I could never take Sami back there. With his multiple health problems he could die. He would have no rights. I’d have to hide him away,” Fatiha describes. If she is forced to leave on Monday, Sami (who is an American citizen) will be left without his primary care giver.

Related: Down Syndrome in Africa: Hidden in Plain Sight

Sami’s second oldest sister, Sara, told me she will likely have to stop working full time to care for her brother, since her father has the most secure job, her oldest sister has a family of her own, and her youngest sister is still in school. She’s especially nervous because her legal status is likely to be in limbo as well.

“What is happening is not about protecting American communities—my 15-year-old brother, a citizen by birth, is about to lose his main source of care and support. While I am a Deferred Action for Childhood Arrivals (DACA) recipient, my status will soon be in limbo, too, since the administration revoked the program. And then what will my brother do? And what of the communities that my sister and I are enmeshed in, that we’ve contributed to? People make up communities, not their papers. I was 5 when I came here. I went from kindergarten through high school here. This is my country, these are my people,” says Sara.

Sami with his sister, Sara, and mother, Fatiha

Related: Read Sara’s Perspective, “Is My Story Being Erased?” 

Another local resident, Shannon Sutter, says she met the family years ago when her own son with Down syndrome was very young (Sami and her son are the same age). Her oldest son also goes to school with one of Sami’s sisters. She says the current administration’s push to fulfill campaign promises is hurting honest, hard working immigrants. “I am all for sending trouble makers back to their own country, but this mother is NOT a trouble maker and shouldn’t be forced to leave. Unfortunately, because people only hear that she’s here illegally and don’t know the whole story (some basing their opinion on hearsay or rumors), many think she made her bed by not actively pursuing citizenship and have no sympathy for her situation,” Shannon Sutter says.

The family has had four lawyers in the past 21 years, and have spent a small fortune trying to gain citizenship legally. “This has come from nowhere. We pay taxes, I have a driver’s license and a bank account. I’ve never committed a crime or even have a speeding ticket,” explains Fatiha.

A statement by the Immigration and Customs Enforcement (ICE) states “Over the last decade, Ms. Elgharib’s immigration case has undergone exhaustive judicial review at multiple levels of the nation’s courts… (which) have uniformly held that Ms. Elgharib does not have a legal basis to remain in the U.S.” U.S. Congressmen in the past have interceded to help the family.

The Ohio Student Association plans to have more than a hundred people at the John Glenn International Airport in Columbus, Ohio on Monday to protest the deportation. Find out about the protest here. And what is to happen to Sami and his family if Fatiha is in fact deported?

When I asked the family what the Down syndrome community could do to help support Sami, they said respite care would be the most helpful. Sami has multiple appointments every month, as well as the logistics of caring for him before and after school.

If you are interested in helping Sami please comment below or message me, and I will get you in touch with his family.

 

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The Value of Down Syndrome

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

 

 

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National Down Syndrome Congress Starts Nationwide Grassroots Advocacy Group

Supporters of the Down syndrome community are by definition a fierce group. Parents and allies often will do anything to create a better path for their loved one with Down syndrome.

The need for grassroots advocacy training and guidance is even more important with current political threats to supports and systems (like healthcare, education, and employment) that people with Down syndrome rely on. Now, the National Down Syndrome Congress is giving you one more way to advocate.

NDSC Convention in Washington, D.C.

Today NDSC rolled out the National Down syndrome Advocacy Coalition or NDAC. The coalition will be a nation-wide, grassroots group of self-advocates and allies, working together to support policies that benefit the Down syndrome community. The program hopes to train volunteers to effectively engage with lawmakers and other change-makers to promote positive advances for our loved ones with Down syndrome.

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

“NDAC will provide a formal mechanism to engage individuals – regardless of level of advocacy experience – in these efforts in order to maximize the power of our community’s voice,” explains NDSC executive director, David Tolleson.

There will be 3 levels of membership, and advocates at any level of experience (or no experience) can get involved:

  1. NDAC Members: Volunteer advocates of all abilities and levels of experience. There is no selection process to be a NDAC Member, but you will need to be a NDSC member first (if you attend the NDSC convention you’ve already paid the $50 annual membership fee). Find out what other benefits you receive with an NDSC membership and sign up here.
  2. NDAC State Leaders: Volunteer advocates with more experience, who will serve as the main grassroots organizers for their state. NDSC hopes to have two to three advance advocate organizers per state. NDSC will be rolling out this level of membership in the new year, and state leaders also must be NDSC members.
  3. NDAC Group Members: These are local, state, or national groups that can be Down syndrome specific, but also cross-disability groups that want to help with outreach and sharing information. The fee for group membership is $20, and entitles one group representative to be the point of contact for NDAC. The group fee is waived if the group is already an NDSC affiliate.
Chris Newlon and her 14-year-old daughter, Rebecca

Long-time advocate, Chris Newlon, who’s 14-year-old daughter, Rebecca, has Down syndrome says the more training opportunities to advocate the better. “Advocating isn’t specific to one organization or group. Nor is it only for politicians or educators. The more we advocate the better, from helping little kids on the playground figure out how to approach a non-verbal child to speaking with our congressmen. Our goals, our focus, is to make the lives of those with disabilities not seem so ‘alien’ but just part of life itself,” Newlon says.

Related: How to End Organ Transplantation Discrimination for People with Down Syndrome in Your State

NDSC Policy & Advocacy Director, Heather Sachs, will be heading up NDAC and says she’s excited to encourage advocates of all levels to find their voice:

“NDSC has been involved in advocacy for decades, but we have really established ourselves as the leading voice on issues such as education, Medicaid, health care, transition and employment policy over the past year. We did a massive amount of outreach and grassroots organizing during the health care and Medicaid battles over the summer, and those efforts laid the groundwork for NDAC. There is a clear need and desire for more grassroots advocacy training and opportunities in our community,” explains Sachs.

Want to apply to be a NDAC member? Click here.

Are you a NDSC affiliate or cross-disability group and want to join arms with NDSC? Email lauren@ndsccenter.org

NDAC State leaders can start applying in January of 2018. 

“We encourage everyone to become a member of NDAC and ask your family and friends to join as well. Given the constant threats to Medicaid, health care, education and employment, the NDSC policy team needs help from a large grassroots army to advocate for equal rights and opportunities for people with Down syndrome. Join us!” Sachs says.

For more information on the National Down syndrome Advocacy Coalition click here.

Tell me about your experience as an advocate, or what experience and training you would like to gain in your advocacy journey below.

 

 

 

 

 

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Changing Perceptions of Down syndrome through the LEND program

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!

 

 

 

 

 

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Down Syndrome Advocacy in Rwanda

“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!