This blog started as a research project into how to include my son in kindergarten and beyond. In seven short months I’ve learned so much, and I hope you have too. I appreciate your readership, and as I look back on the top posts of this past half year I realize what’s important to you.
Inclusion in school tops the list, which is good because that’s where I want my focus to be in 2018. As part of the Special Education Advocacy Training course I’m taking through the Council of Parent Attorneys and Advocates, I hope to document what I learn and in turn help my readers on their journey to inclusion too.
Thank you so much for following along on our journey! I appreciate all of you!
Recently I wrote a blog post lamenting my mortality as it relates to my son with Down syndrome. Parents are often a child with a disability’s first and most important advocate. While the post started off with me whining that no one can replace me, it ended on a more realistic, less narcissistic note. I will probably die before my son, and he will be just fine without me. How, you ask?
He will do just fine, because he will have a “Circle of Support” that will allow him to lead a successful life of interdependence. You read that right: not independence, “interdependence.”
This idea is not mine. Many parents of children with disabilities facilitate this idea of interdependence every day, and one in particular has coined the phrase “Circle of Support.”
National recognized speaker, author and advocate, Janice Fialka, shared her son’s journey to interdependence with me via phone the other day. You may recognize her 30-year-old son, Micah, from the upcoming documentary “Intelligent Lives.”
Micah lives exactly 471 miles from home (I had to smile over the phone, because of course his mom knew the exact mileage), and has worked for the University of Syracuse as a teacher’s assistant for the past 5 1/2 years. He also has an IQ well below what most people would consider functional for a life of independence and “success.” Micah’s mom, Janice, says Micah’s success is 30 years in the making and includes help from dozens of friends.
“My advice to families is to seek out support. At first I felt awkward, uncomfortable, angry or too shy to ask for help. I soon realized Micah needs more than just me,” says Janice.
Micah (center) with his most inner circle–his family.
Fialka says families need to drop their love affair with independence. We all need a circle of support to be successful. “It’s important to learn the value of interdependence. Learn to ask for help and let people in. We had to be intentional about this with Micah,” explains Janice. Micah’s family became intentional about interdependence in elementary school by creating a “circle of friends.” First they invited friends in his class to hang out with Micah at lunch time, recess, and at home.
“Micah is poised now, but he could be very annoying when he was younger. He just didn’t know how to interact with people. I can remember crying because we invited friends over and Micah would be standing in the corner not playing with his guests,” Janice describes. The “Circle of Friends” got more complicated in middle school, but Janice was able to build relationships with eight families who continued to interact with Micah. By the end of high school, Micah had a group of friends rally, petition, and eventually help Micah sue a local university to allow him to live on campus and attend college courses there.
“When you ask Micah now, he will tell you he’s always had lots of friends. But he spent countless weekends at home alone. He’d call five friends and no one could meet up,” remembers Janice. Still, the family continue with the intentional interaction, and it really paid off. “When Micah was offered a job seven hours from home, he was the one that came to us an said ‘I’m going to need to create a circle in Syracuse if I’m going to live on my own.’ We knew then what an impact the idea had on Micah’s life,” Janice says.
Janice wants parents to know it’s “not about letting go, but holding on differently.”
What an impactful message from a mom who’s been there and gets it. You can order Janice and Micah’s new book, “What Matters: Reflections on Disability, Community, and Love,” here. Listen to an interview Janice gave to NPR here.
Tell me what you think about the idea of a “Circle of Support” for your loved one with Down syndrome below. How have you already begun this journey? What challenges and successes have you found in helping your loved one seek a successful life of interdependence?
College may not be for everyone, but for students with intellectual disabilities (ID) post-secondary programs have historically been completely out of reach. Since 2008 the federal government has given incentives to higher education programs who open their doors to students with Down syndrome and other intellectual disabilities.
Since the reauthorization of the Higher Education Act a decade ago, more than 260 college programs have been created for students with ID. But only the minority of these programs include a 4-year, all inclusive program for students with ID. The College of Charleston’s REACH program is one of them.
“I love it here. I am treated like a person, not like a disability. My classes are hard but I get all the help I need. I have lots of friends who don’t care about my disability, we don’t really talk about it,” explains a students with Down syndrome attending the REACH program.
The REACH program models a typical college experience. Students take regular classes and live on campus. The 4-year program started in 2009 with a grant from the College Transition Connection program, and has four areas of focus: academics, social, independent living, and career development.
Program Executive Director, Edie Cusack, says student success in the program often requires training parents and professors to change their mindset. “There’s an acceptance process for parents too. We’re really looking for them to let go. We often get parents at orientation who say ‘maybe that student can do it, but my child cannot.’ By the end of the program they’re proven wrong.”
“We also conduct specific inclusion training with professors, who often have no background in teaching techniques for students with intellectual disabilities. We promote UDL, scaffolding instruction, and stress high expectations that academic learning will take place,” explains Cusack.
REACH boasts a 93% post-program employment rate, and a 75% independent living rate. Cusack says students spend the last six months of the program finding employment and independent living supports. Students must also complete an internship in a career field of their choice.
“I believe in the dignity of risk. Stopping people with disabilities from taking risks and making mistakes is stopping them from living a full life. A cool side effect of the program is the idea of disability is shifting. No one turns and looks and stares when our students with Down syndrome goes into cafeteria. In fact we have a student with Down syndrome currently who has been entered into the lottery to dorm with typical students because she’s on-par for living skills,” Cusack says.
There are no national standards or accreditation process that post-secondary programs must follow to serve students with ID. Think College works as a clearing house for more than 260 college programs, and is working with the federal government to develop standards. You can learn about other college programs here.
A bill was just released to the House of Representatives to reauthorize the 2008 Higher Education Act last week. Some worry that gains that have been made under the 2008 version, could be lost in the current bill that calls for deregulation. You can read the bill here.
You can find out about the College of Charleston’s REACH program here. Is your loved one with Down syndrome going to college? What other post-secondary programs have you learned about that serve students with ID? Share what you know below.
Will my son, Troy, always live with us? Will he have a fulfilling career? What will happen to my son when my husband and I pass away? These are questions every special needs parent must face.
A new trend includes places like “Promise of Brevard,” in my hometown. These type of communities include employment within the community, and supported living. Parents are often the brainchild of these communities. Supporters point to low employment rates for people with developmental disabilities, and how issues with transportation often hinder any employment. The idea is that everything is on-site. Opponents of this new trend argue that it leads to further segregation of people with disabilities.
Promise of Brevard is a 39 acre community especially for individuals with disabilities. It will have independent housing with support for over 120 residents with disabilities, as well as vocational training and employment at one of its 9 businesses on campus.
Betsy Farmer breaking ground at Promise with her adult son, Luke.
The community is the realization of a promise Betsy Farmer made to her son, Luke, when he graduated from high school. Luke wanted to live independently and work like his typical brother, Josh.
“Promise is a place where young adults with special needs can live a life full of opportunities and freedom never thought possible,” founder Betsy Farmer explains.
Promise Thrift Shop
Over 270 individuals applied to live on Promise, but so far there’s only room for a little over 120.
Promise’s first business, a thrift shop, has been open for about a year and in its first month they had over 1500 customers. Six “Promisers” with disabilities are working at the Promise Thrift Shop.
The property will be more like a walkable community with a cafe and bakery, doggy daycare, Field of Dreams accessible sports complex, skate park, splash pad, festival area, bed and breakfast, accessible playground, and equestrian riding center.
Construction overlook of the residents area
More than 200 community supporters, and continuous fundraising events made the community possible.
Promise Cafe and Bakery will employ people with disabilities
All of Promise’s businesses will provide vocational training and employment for its residents with disabilities.
Ten college students from area universities will serve as housing assistants, so that residents get the support they need to live independently. There are also typical adults that rent apartments within the community. Opponents argue that this is not enough. That a truly inclusive community would have people without disabilities living beside those with disabilities.
Tell me about communities in your area below. How do you feel about this new trend? Do you feel like it’s new at all, or just another form of segregation for people with disabilities?
If you’re interested in learning more about Promise of Brevard, or would like to donate head here.
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 Hereto 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.
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.
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.
