Welcome to Club 21 South Bay Community Group

We are excited to announce that South Bay Down Syndrome Association (SBDSA) is now part of Club 21 Learning and Resource Center.   We will be called “Club 21 South Bay Community Group (Club21SB)”.  This will be the first Club 21 Community Group established by Club 21 to serve families with Down syndrome in outlying areas! [MORE TAG]

What is Club 21? 

Please know as a Community Group we will continue to provide THE SAME events LOCALLY that we do now, including Playdates, Youth Group and Monday Night Meetings.  We will still have an annual Fiesta celebration. We hope to also continue the Self-Advocate programs started by Eden Rapp. This will all be funded by Club 21 giving us a budget for local community events.

We will now have a bigger voice and a larger organization to support our families and children with Down syndrome through an expanding network of educational and learning opportunities at Club 21.

As with SBDSA, Club 21 is a non-profit and will continue to be dependent on fundraising activities, generosity of donors and a pursuit of sponsorships and grants. The Club 21 South Bay Community group will be actively participating in raising funds for the organization so that we can grow and serve all communities with individuals with Down syndrome as well as our community here in the South Bay. The success of the above continues to be dependent upon our active membership, participation and enrollment in all Club 21 activities, both locally in the South Bay and in Pasadena.

We will still be a non-profit, however our 501(c)(3) Tax ID # has changed.  It is now 26-2887301.  Please make a note of this, when considering additional financial support for our organization.

This Community Group moves us from running a separate non-profit and toward a larger organization utilizing liaison support.  Rather than running our own affairs and wasting time holding board meetings and filing paper work, we will have two Co-Leaders who will volunteer for Club 21 to lead our Community Group.  Karen Cull and Roz Mooney have committed themselves to this task.  It is a two-year commitment and then someone else will have this wonderful opportunity.  The Community leaders will organize local playdates, Youth Group, Monday Night Meetings, and the Annual Fiesta.  Having been active in the organization since inception we are excited about this opportunity to continue the great work that has been done in the South Bay over the last 8 years, and we know that as we work together we can continue to benefit all of our local families and our children with Down syndrome.

You might have some questions? FAQ

Comedy…and magic too!

Comedy & Magic ClubPlease join us for an evening of laughter at the Comedy and Magic Club on June 9th in Hermosa Beach.  Jason Collings is the headliner. Two drink or dinner minimum.  Sorry kids, you must be 18 to participate.
The show starts at 8 pm; doors open for dinner and / or drinks at 6:30pm. Guests must be seated by 7:30.
$20 per ticket, all proceeds go to SBDSA when you buy your ticket from SBDSA.

Contact Nori     @SBDSA.org for tickets!!!

Join our team!

Without the dedication to inclusive education of Nancy Litteken and  Club 21 in Pasadena, the success of our conference Making Inclusion Better would not have been possible.  We are forming a team to walk at their Walkathon in Central Park Pasadena on October 17. You can join our team and come to Pasadena with us or you can sponsor our our team walking. Please follow this link to our team page and join our team!

 

US Department of Education supports inclusive Early Intervention

The US Department of Education recently issued a policy statement on Early Intervention for children with disabilities detailing the importance of inclusion in these programs. How are we going to do this? Come to our Making Inclusion Better conference on October 3 [Read more…]

Making Inclusion Better

Registration for our one day conference for teachers and parents is now open. The conference will be held at Torrance Memorial Hospital Health Conference Center on October 3rd 8 am-4 pm.

?Necesita interpretación en Español en el evento?  Podemos hacer esto disponible si se registra hacia el 26 de Septiembre.

Please send this flyer to your IEP team (and anyone else you think might be interested) using this link: http://sbdsa.org/wp-content/uploads/2015/08/Making-Inclusion-Better-Flyer.pdf [Read more…]

Myths of Inclusion

Making Inclusion Better speakers Natalie Holdren and Kristen Uliasz are both VPs on the board of CAL-TASH, the California chapter of TASH, an international leader in disability advocacy striving for fully inclusive schools, workplaces, and communities.

“For 40 years, TASH has advocated for human rights and inclusion for people with significant disabilities and support needs – those most vulnerable to segregation, abuse, neglect and institutionalization. TASH works to advance inclusive communities through advocacy, research, professional development, policy, and resources for parents, families and self-advocates. TASH ensures that all individuals have the opportunity to learn, work, and enjoy life amongst a diverse community of family, friends, and colleagues.”

As a major contributor to the conversation, TASH provides important resources for those Making Inclusion Better. Natalie and Kristen will present Creating Inclusive Communities.

TASH-Myths-of-Inclusive-Education

TASH-FAQ-Inclusive-Education

Your new Board of Directors

President: Kelli Rea

I am a South Bay native who graduated in 2003 with my B.S. in Accounting from CSULB. I went to work for Deloitte & Touche, LLP where I met my husband. In 2008 we were married and adopted our fur-baby, Rambo. Two years later we began our family. Charlotte was born in 2010, and Daniella (T21) was born in 2013. I am currently a full time wife and mother (CFO of my household if you will).

Executive Vice President: Karin Ferrari

I was born as raised on Long Island in New York and moved to California with my husband Matthew Ferrari in 2010. I worked for a Transportation Logistics company as an Account Manger & Operations Supervisor before having my daughter who was born with Down Syndrome in 2013. I am currently a stay at home mom to Arianna and expecting a new addition in June 2015! We found out Arianna would be born with Down syndrome in my 20th week of pregnancy. I became involved with the SBDSA when Arianna was only three months old and it has been such an amazing experience to meet so many wonderful families who have helped guide me through this journey. I am excited to be running as Executive Vice President of the SBDSA because I would like to be able to help others who find themselves in the same position either during pregnancy or after birth. This is a wonderful organization and I truly believe the sky’s the limit with what we can offer and do!

RaeFerrari

Conkoff KronbeckHoliday

Publicity Vice President: Lisa Concoff Kronbeck

My name is Lisa, and my wife is Mandy. Our daughter, Leah Valerie, is 22 months old, and was born with Down syndrome and long-gap esophageal atresia. Mandy is a community college English professor, and I am Leah’s own personal attendant, nurse, clown, social media director, chauffeur, and in-house counsel. We have enjoyed meeting new friends in SBDSA, and I look forward to the opportunity to broaden awareness about SBDSA and the community and support it provides to families across the South Bay.

Secretary: Xindy Holliday

I’m a stay at home mom to Royal (T21) and Pearl. And I grew up in the South Bay. Growing up I knew that if I ever had kids I’d want to stay home. I feel so lucky and privileged to be able to live out my dream.
At 17 weeks pregnant we found out about Royal’s diagnosis via amnio. Royal was admitted to the NICU, at Kaiser Sunset for his first 25 days of life. And then three months later he would have two open heart surgeries to correct his heart defect, a complete AV Canal.
On March 21, 2012, I reached out to SBDSA and I’m so happy I did. It was nice to meet other parents of kids who had Ds and listen to them share stories of their day to day life. I love to see our groups grow with every new family that has joined.
Ever since we came home from Children’s Hospital Royal has been healthy and continues to grow, thrive and amaze us with his infinite curiosity and love of learning. Royal started preschool at Launch at the beginning of March.
Pearl was born on April 21st of 2014 and she is not the easy going baby I imagined she would be. Being a parent to a typical developing baby has been eye opening with its own challenges as well. She is however a healthy baby girl and is so loved by us all. I feel like Royal is the best gift I could have given my daughter and I look forward to watching my children grow together. Our family lives in Torrance.

Remaining in post are:
Treasurer: David Socol
Membership Vice President: Roz Mooney
Programming Vice President: Carrie Wetsch
Information Technology Vice President: Brian Wetsch
Social Action/Community Outreach VP: Bronwyn Sheilds & Maynor Tecun
Ways & Means Vice President: Nori Dempsey
Youth Activities Vice President: Kathy Troeger
Medical Vice President: David Socol
Historian & Past President: Karen Cull

Spotlight on Inclusion

Spotlight on…Inclusion

Inclusion is huge word in our community; it is worth taking some time to think what it really means. Often we use it as an abbreviation for ‘full inclusion in a general education class’ but there is so much more to inclusion.

Inclusion is for everyone and everything. Inclusion is for people with Down syndrome, even those who also have autism or ADHD, or a cardiac issue. Inclusion is being part of your local community, having a productive role in society, having meaningful friendships with people who enjoy your company. Inclusion happens in soccer teams, in churches, in social clubs and in workplaces.

Fifty years ago, and even today in many countries, children with Down syndrome do not live at home with their families. The first step to inclusion was inclusion in the family. Still our paperwork in California reflects this change as if a new step. Our archaic Regional Center MediCal waiver is designed to support families choosing to raise their children with developmental disabilities at home instead of in an institutional setting, as if any of us ever considered anything else.

Inclusion in education is our biggest battle because it is in schools that we teach people how to live in a community. If we can teach all the children to include everyone in their playground games and in their math class, it will be so easy for them to include people with special needs in their startup company. Inclusion in education is our battle for our children’s future.

Many families do not want ‘full inclusion in general education’ because they know that their children will not do well in a large General Ed classroom and because they recognize the benefit of the training and unique experience that special education teachers bring to their profession. The choice really does depend on the individual child. However even children in a segregated special education class can benefit from being partially included in a meaningful way.  Seeing the practice of inclusion as a dynamic continuum is, if you like, an inclusive approach to inclusion.

To be meaningful I believe it has to include ‘belonging’. I have seen the most disabled challenged children react to not being included with other children that they feel they belong to. Forget about numbers and abc’s. What school teaches us is how to be a community, and belonging being the primary benefit of living in a community; it is a huge motivating force. Belonging is one of those things like driving or swimming that you have to learn hands on by doing it.

The segregated setting has its benefits but these have to weigh against problems such as safety in a classroom where non-verbal children sometimes are ‘restrained’. For the most part special education teachers are well meaning and dedicated individuals, the angels of the teaching profession, but things can go wrong. An academic study on self-contained classrooms shows what the restrictive environment can be like for learners who are already challenged.  Also as the number of children who are not included declines, the distance the children need to travel to a specialized classroom increases, using up the child’s learning time.

Many families want full inclusion in General Education and still find it difficult to persuade school professionals that it is possible. What families need is resources, training and support. Certainly the law is on their side both federal and California state legislation supports children with disabilities being educated with their community in their neighborhood school. The Individuals with Disabilities Education Act (IDEA) 2004 requires that children are educated in the least restrictive environment appropriate for that child’s needs. The law specifies that the default environment is the school where the child would be educated if they were not disabled and requires that schools modify the curriculum and provide accommodations suited to the child’s needs as set out in their IEP. The same demand is found in the California State education code, that the school district should maximize the interaction between disabled and non-disabled children. But this awesome idea is often set aside by California school districts as too difficult or too costly. The courts have been quite clear that the burden is on the school district try to make it possible. However the burden usually falls on families to make it happen.

What teachers and administrators need is resources, training and support. Unfortunately the wheels and cogs of the state education system is taking along time step up to the plate and fit the California education system to the federal requirement, leaving teachers, administrators and families on their own trying to make inclusion work.

For families seeking to persuade school districts to include their children the best resource is an advocate. SBDSA has a list here of advocates. There are also the free or low cost advocacy services available through regional centers, OCRA (Disability Rights) Developmental Disabilities Area Board 10 or mediation services through SW SELPA.

Many experts and studies have concluded that inclusion is the best learning environment for most children with Down syndrome but it is no cakewalk. Both for parents and teachers a lot of extra work is required. Special education often focuses on self-help skills, everyday living skills which can be missed in General Ed, leaving it to the parent to teach stuff like getting dressed, toileting, eating with manners, stuff that most kids learn before they ever go to school.  Also meaningful inclusion usually means modifying school work, projects and ‘frontloading’ (introducing the child to vocabulary and concepts before they come up in class) which is a lot of extra work for parents. The biggest magic key is communication between team members, teacher, parent, and therapist.

Club 21 in Pasadena is a unique organization offering families hands on help and training with home school communication, modification and behavior support as well as training for professionals. DSFOC and TASH are also committed to providing practical help for education professionals seeking a more inclusive classroom. And there are a number of great websites such as the Inclusive Classroom and Swiftschools as well as facebook groups like Inclusion for Children with Down Syndrome. If you are trying to increase your child’s inclusion in education, please reach out to one of these organizations for help.

Some school districts are behind the movement, employing inclusion specialists to promote modification and accommodation and team communication. There are also charter schools committed to the full inclusion model such as WISH and CHIME. But it is remarkable how many school districts can to ignore national and state education policy in favor of their own ‘time tested’ systems.

For many families the biggest barrier is the teacher’s attitude which is understandable given that the state still segregates general and special education teachers in its credentialing system. The teacher feels unprepared to take on responsibility for a situation for which they were not suitably trained, undermining their status as a professional. Usually the teacher ‘comes around’ to see the child’s potential around April or May just in time for a new teacher to take over. The introduction of the Common Core provides a unique opportunity to retrain teachers including the idea of Universal Design for Learning, which is made possible by the new skilled based standards. However we need to support the idea of differentiated learning in all classrooms.  It is food for thought that tracking for gifted kids is perhaps as limiting to all children’s potential as some models of self-contained special education.

Now you are thoroughly exhausted but it is worth reiterating why it is all worth it. As so many parents remark, ‘there is no special needs Target’, no special needs gym, no special needs park. We need our kids to live in the world and that means we have to teach them how to live with the unlabeled. And we need the unlabeled to learn how to live with them.

by Karen F Cull

Resources
From Emotions to Advocacy Wrightslaw

Whose the slow learner? : A Chronicle of Inclusion and Exclusion by Sandra Assimotos McElwee 

Meeting the Educational Needs of Children with Down Syndrome: Keys to Successful Inclusion

Paula Kluth Is your School Inclusive?

Articles on Inclusion collected on SBDSA.org

Inclusion Binder

Successful-Daily-Practices-of-Inclusion-Teachers-of-Children-with-Down-Syndrome.

Experiences-of-Inclusion-for-Children-with-DS

Inclusion the Pros and Cons

Inclusion Educating Students with Down Syndrome with their Non-Disabled Peers

Inclusion 101 

Spotlight on…Co-occuring Down Syndrome and Autism Spectrum Disorders by Jennifer Brownell

In January of 2007, our son Noah was born 3 months prematurely and diagnosed after birth with Down syndrome.  December 5, 2012 our lives were forever changed.  That was the day we were officially given an Autism Spectrum Disorder diagnosis for Noah who was almost six at the time. [Read more…]

Announcing the new SBDSA merchandise store on zazzle!

We have designed some tshirts, mugs, button, magnets and stickers featuring our SBDSA logo. There is even a pair of SBDSA flipflops. Five to 25% of the sales price goes directly to SBDSA, more if you get there following this link.

Coming soon SBDSA holiday cards!

If you are looking for the “Keep Calm its only an extra chromosome T’s, these are also for sale on zazzle, though not by SBDSA. You can reach that store by following this link (and we get a referral credit!)

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