Thank you Northwest Down Syndrome Association

A Vision, A Voice, An Amazing Empowerment Organization

My introduction to the Northwest Down Syndrome Association (NWDSA), a small, non-profit organization in Portland, Oregon, was shortly after my second daughter was born in 2003. Her Trisomy 21 diagnosis, an online search, and my need for information lead me to contact them. Soon after, I received a package in the mail and inside was a gift from the NWDSA. They sent me their New Parent Guide, a book that congratulated, was refreshingly positive, yet provided the much needed up-to-date information I was seeking. Everything I had gotten my hands on up to that point online or from the library was outdated, dry, religious, or only medically focused pieces with dreary overtones.

Vision: The NWDSA New Parent Guide was the first resource about Down syndrome (Ds) that enlightened and excited me. It included success stories, positive affirmations, full-page color photos of local children with Down syndrome and their families, current data about the lives (from birth to adulthood) of individuals with Down synrome, medical possibilities available to individuals with Down syndrome, a preventitive care chart about different health and well being check up times, and much, much more. This gift brought me hope, comfort, and cemented the feelings, hopes, and dreams I had about my daughter, Down syndrome, and what being a parent of a child with a Trisomy 21 diagnosis meant to me. I was so thankful I felt like I finally had some footing. 

Then we were immersed in disability world: it includes appointment after appointment, from the pediatrician to the cardiologist, to home visitors providing services such as an occupational therapist and cacoon nurse. A service my daughter received outside of our home was a cross-disability early intervention group provided by my county. This is where I met a woman with a baby boy with Ds about the same age as my daughter. We quickly befriended each other and decided to start a play group of our own, for families like ours that included a child with Ds. We felt we could learn a lot from the experiences of other families with older children and wanted to share our experiences with families who just had a baby with Down syndrome to help them. From the park to a free church location Open Arms play group formed into a supportive, comforting resource for myself and families that attended. We applied for and received a grant to purchase gym mats and therapeutic toys for our group. 

Voice: Our next step, in 2004, was applying for a grant with the NWDSA to support and run our monthly playgroup for children with Down syndrome, and their families, in our community. Our request was approved and Open Arms continued to grow. Our play group soon needed more funding to continue to provide snacks and NWDSA information about upcoming events and trainings but we were fortunate enough to collaborate with NWDSA, work under their umbrella, and lead the play group with their support. It was then that our group began to provide resources, like the New Parent Guide, to new families just as it had been gifted to me a year earlier. 

Empowerment: Months later, 2005 was upon us, I accepted a position on the NWDSA board of directors. Being involved in board decisions, learning from NWDSA trainings, advocating in Salem, Oregon, Olympia, Washington, and Washington, DC, to coordinating socials and the 2008 Buddy Walk, and much, much more, paralled with watching my daughter grow, learn and become an advocate for herself was one of the most empowering times of my life. No job I have had has ever made me feel the way I felt doing the work of the NWDSA. It was a huge growth period for me and my family over the five year span I was involved on the board. I resigned when I decided to go back to work and attend college full time. 

A handful of years later, here I am at a place in life where I have small amounts of time to do the work I love, the work of the NWDSA. Creating, nurturing, and celebrating is what makes NWDSA such an accomplished organization that is able to touch the lives of thousands of families and individuals with Down syndrome and other disabilities. The insight, love, and passion this group puts forth is often what helps center me on my journey and gives me zest for the future. I have come back to work with the NWDSA on an exciting new project. 

I have collected stories from families in Oregon and Washington who have a child with Ds that has had a procedure on their heart. About half of children born with Down syndrome will require some type of medical procedure to correct a congenital heart defect as my youngest daughter did at four months old. During this time, early on in my daughter's life, I had a tremendous desire to connect with other families with children with Ds and felt so alone during her open heart surgery because I didn't know anyone who had been through a heart surgery with their child and I didn't have their stories to give me confidence. Through collaboration with the NWDSA last year I realized my great need then of a personal recollection from another family is just what families today still desire and so the heart stories booklet was developed. The last few pieces of the booklet are coming together and more work needs to be done around sponsorship but knowing that NWDSA will be able to provide a booklet of personal accounts to a family searching for comfort through others experiences is another reality that NWDSA has made happen. 

Finding and being involved with the NWDSA was exactly what I was looking for and needed after my daughter was born and diagnosed. The NWDSA has always been my go to place for the information I have needed each step along the way. Today, is no different and I will turn to NWDSA again and again for trustworthy, local resources, trainings and social events. This group helped me: make my vision for my daughter concrete; gain a voice to advocate for my daughter and others and; become empowered and empower my daughter. I look forward to future work with NWDSA and all of the rewards that come along with being involved. 

Open Arms Play Group: Open Your Heart and Mind

Founding Open Arms Play Group

 

 



When my daughter Karley was just a few months old a resource available to my family, for my daughter with Down syndrome, was a community early intervention playgroup. The group consisted of parents and their babies and toddlers. The children had varying disability diagnoses but we all lived in the same county. There were only a few babies in the group, in 2003, with Down syndrome.

One mom Sydney and I immediately bonded. Her son Aiden and my daughter were close in age, so were our older daughters, and we both had similar feelings about the lack of Down syndrome specific resources in our area. We valued the playgroup we were attending but felt there was potential for something more. It was then that we decided to start our own play group specifically for families with babies and toddlers who have Down syndrome.

We wanted to learn from parents who had children older than ours and wanted to see what children, other than our own, with Down syndrome were like. It was our goal to get connected with other local families through the play group and facilitate connections for them as well. Sydney and I felt isolated and didn't want others to feel that way. The ideas and stories we shared with each other were a lifeline and we felt other families might be craving their own personal relationship with another family for support as well. It was important to us to bring the community of families with children who had Down syndrome together. We knew if we felt strongly about sharing our experiences and learning from other's experiences than there were probably other parents out there who did too.

A local church opened their doors to us and let us have our play group there.We reached out by calling and emailing our flyer to local CACOON nurses, labor and delivery departments, cardiologists, the Northwest Down Syndrome Association and any other group we could think of or find that may come in contact with a family who had a child with Down syndrome. The playgroup was held once a month and every month a new family would join us. The group steadily grew and we decided to research grants to try and fund some resources necessary to keep the group going. We received a grant that helped pay for some toys and soft tumbling mats for the babies and toddlers to safely play on. We also met with the NWDSA board and received a mini-grant to help the playgroup financially.

The mini-grant from the Northwest Down Syndrome Association was used to pay for monthly snacks, printing resource materials, and other regular expenses. This opportunity helped grow and formalize the play group. With formalities came the time to come up with a name. We had a few in mind but learned about People First Language and decided on Open Arms Play Group. It fit because not only did we want society to embrace our children with open arms but we also wanted families to feel they could come to a group that met them where they were at with open arms. Eventually, in 2004 our parent-driven play group became part of the NWDSA.

Open Arms Play Group, officially under the umbrella of NWDSA, for children birth through five, with Down syndrome and their family, focused on giving parents opportunities to connect with each other on a personal level by asking questions, sharing ideas, and learning from each others experiences. Open Arms continued to be a fun place where children enjoyed playing, having snacks, learning and growing together. New families would come and meet other children with Down syndrome, their siblings and families as they were engaged, interacting and involved in everyday activities. Often you could see a weight lift off their shoulders as they looked around and realized their child would be just fine. In playgroup we also worked to instill the belief in parents that they are the experts and number one advocate of their children and worked to empower families to find their voice to share their story.

Today Open Arms is a successful group of the Northwest Down Syndrome Association, located in Portland and Vancouver. Under new leadership it is still gaining new membership, creating future leaders and continuing to open the hearts and minds of people who attend. New families are provided the invaluable NWDSA New Parent Guide, upcoming event flyers for learning and awareness opportunities, conversation with everyday families about daily life, meeting other dynamic children with Down syndrome and the many other benefits of the playgroup. Continuing families benefit from local and personal connections, monthly support, sharing life's experiences, remembering where they were through the faces of babies and looking forward to where they are headed in the business and brilliance of older kids.

In founding Open Arms I was also able to find the path to make the most of my daughter's life. My husband's and my determination to hold on to every hope and dream we had for Karley, my friendship with Sydney, getting answers to my questions at Open Arms Play Group, and receiving direction from the NWDSA to learn to be an informed parent were all key pieces in knowing that life with a child with Down syndrome would be just fine. Being involved in an active Down syndrome community has helped me and many other families find the way.

Jamie Burch

Never Missed A Beat: Karley's Open Heart Surgery

Never Missed A Beat

The day after Karley was born she was diagnosed through Echocardiogram with congenital heart disease (CHD) at the hospital. To find out our new, little daughter had holes in heart was one of the scariest days of our life and more so than a probable Down syndrome diagnosis. For the next few months we had to wait and see if her heart would repair itself or if she began to show symptoms of a failing heart at home. We noticed how hard she had to work to eat as she would break into a sweat every time she nursed. During a follow up appointment with her cardiologist there was good news, Karley’s ASD (atrial septal defect) reduced in size but her VSD (ventricle septal defect) was the same size and PDA (patent ductus arteriosus) was still open. It was determined that Karley needed open heart surgery. By the time Karley was four months old we had to come to peace with the fact that it was time to literally put our daughter’s life in someone else’s hands because it would save her life.

We prepared for her surgery by meeting with the surgeon and asking questions, reviewing the information about her heart defects, and talking to everyone we knew to help us walk ourselves through the process. On surgery morning, after a prayer for Karley with the hospital chaplain and our family members, we told Karley we would see her soon, as she left in the arms of the anesthesiologist to be prepared for surgery. It was the first time we had ever been apart. Over the course of the next five hours we visited with family, waited for updates from a nurse, read and looked through optical illusion books, had lunch, and walked around and checked out the hospital. Even though friends and family came to support us and we were told the statistics of success were on Karley’s side, I felt so alone not knowing anyone else who had gone through the same thing we were going through. I wished there was some one there to talk to who could reassure us with their story or their child.

When the nurse came in the final time she let us know that Karley’s breastbone had been wired in place and they were almost done stitching her chest closed. Half an hour later we got to see our first glimpse of our little girl as she was being transferred down the hall by her surgeons to the Pediatric Intensive Care Unit (PICU) and I finally felt like I could stop holding my breath. The four days of recovery following did not seem as long as that day in surgery because we got to be by her side and watch her come back to life as she opened her eyes again for the first time. I was thankful for the precious moments that came over the next four days when she kicked her little feet, grasped my finger, fell asleep with a smile on her face, and hearing the sound of her voice when she cooed. We looked forward to holding her, taking her home, and watching her blossom now that her blood was flowing to her benefit.

It seemed like the moment we got home I could see her growing in front of my eyes as if she had never missed a beat. She looked, lifted, rolled, reached, gurgled and grinned with more purpose and poise than ever. Karley was more active and alert than she had been before like a caterpillar that morphed into a beautiful butterfly that was free to explore the world from a new perspective with strength and energy.  From then on Karley’s baby-tude kicked in full force and her big personality really began to shine. She amazed us every day with her courage, will, independence and intelligence and still does. 

We still have a hard time fathoming the precise and delicate skill needed to work on her tiny little heart that was only about the size of her tiny four month old fist. We are so grateful for the technology and expertise that saved our daughter’s life. Most of all we are forever indebted to Karley for coming into our life. The experiences we have had since her birth and the journey we are on now because of her have enriched our lives more than we could have ever imagined. Today Karley is nine years old and is a third grader. In our community she is a cheerleader, Girl Scout, friend, classmate, student and more. At home she is a daughter, sister, pet lover, reader, artist, dancer and the list could go on. Karley is so full of life and love. We wouldn’t want our lives any other way. There have been trying and scary times like heart surgery but those moments will never amount to the joyous and amazing times we have had and get to have with her for the rest of our lives.       

Jamie Burch

Down syndrome Genocide

Down syndrome Genocide

Tomorrow is Down syndrome awareness day (March 21^st symbolizes three 21^st chromosomes found in people with Down syndrome). To bring light to issues people with Down syndrome and their families face my current event topic is about a local couple who sued Legacy Health for wrongful birth after their child was born with Down syndrome. An Oregon couple receives three million dollars because they say that they would have aborted the pregnancy if they would have been accurately informed of their child’s Down syndrome diagnosis, that their daughter was therefore wrongfully born and now they have to pay “for the extra life-time costs of caring for her” (Oregon Live, 2012). How can a child be wrongfully born is my question?

Let me start off by noting a few points up front. This issue for me is not an abortion debate so lets put that aside because I am pro-choice. However, it is about something I call Down syndrome genocide. Genocide is the systematic elimination of a specific population of people and that is just what prenatal tests and negative societal scripts and attitudes about Down syndrome is doing to the future population of people with Down syndrome.   

This family, like many other families, opted for prenatal testing to detect abnormality in their unborn child. Eugenics has lead our society to believe that a child born with any type of disability is defective. Sorry folks, but there is no perfect race and no perfect offspring. There is such a negative outlook on the lives of people with Down syndrome that 89 percent of women pregnant with a child who has Down syndrome has an abortion. The reality is that society tells us people with Down syndrome have lives that aren’t worth living. The other reality is that doctors deliver a prenatal diagnosis of Down syndrome along with the option to abort not an option to connect with a local Down syndrome organization or with a family who has a child with Down syndrome so that they can become informed before they make a decision to keep the pregnancy or not.  

The Oregon couple wanted a normal, healthy child. The couple wanted nothing to worry about. The couple wanted another child like their sons who are strong and bright. What this couple needs in my opinion is to stop buying in to the negative scripts and attitudes about people with Down syndrome. I have a daughter with Down syndrome and she is as normal and healthy as her peers without Down syndrome. I have a daughter with Down syndrome and a daughter without Down syndrome and I worry about them both because they are my kids. I have a daughter with Down syndrome and a daughter without Down syndrome and they are both strong and bright. My daughter with Down syndrome has been raised as a person not a definition of her diagnosis or society’s definition of someone with Down syndrome.

This family worries about medical problems, was told that their daughter would never be independent as an adult and worry more about who will care for her when they die. Seriously? Don’t all parents worry their child could have a medical problem, or that they may need to support their kids through adulthood if that is how things turn out, or that if they die their child will need someone to help them out. Don’t they have the same concerns for their other children? If not, then there is a serious case of altered parenting taking place here. These parents should not be raising or treating their daughter with Down syndrome any different than their sons without Down syndrome. If they don’t want their daughter to be disabled they shouldn’t raise her in a disabling environment and should raise their expectations for her. This family has further demeaned and devalued the life of people with Down syndrome.

How do I tell my daughter with Down syndrome who can read that society thinks she shouldn’t be born? How can I explain to her that people with Down syndrome are being eradicated from this earth because of myths? How will she ever feel value as a human being if people with Down syndrome are not valued enough to live? I could never put a price on my daughter’s life or sue for a dollar amount that could amount to her life.  

It would have been nice to see this family use this publicity to better the lives of people with Down syndrome. Yes the hospital made a mistake in their screening results but the family should realize four years later that they made a mistake in their assumptions of wrongful birth. If they love their daughter as much as they are reported to then how in the world could they sue for her being born? Imagine raising a child you think should have never been born. That is not a healthy environment at all for any child.

There are thousands of families who want to adopt children with Down syndrome not because they pity them, not because they have no future, and not because they are weak and helpless. People who love someone with Down syndrome know that people with Down syndrome can have no limitations, can have endless potential, and can be empowered and independent. High expectations raise the bar for any child, including children with Down syndrome. My daughter with Down syndrome has enriched my life not ruined it. The reality is that prenatal testing and negative societal attitudes are causing Down syndrome genocide.

IEP: Focus on Strengths Not Weaknesses

 

IEP: Focus on Strengths Not Weakness

 

We are almost a month into the new 2011/2012 school year. About a week ago, when I was volunteering in my daughter's second grade classroom, after we went on a field trip, her teacher told me, "She is a good reader." I agreed she was. When I got home later and reflected, I realized that her teacher's comment was giving me hope. Hope for a school year, in which staff recognized her abilities. It was the first time, I have ever been told by a staff member at my daughter's school, that she is "good" at something academic. Strengths are mentioned but "good at something" was a first.

Her report cards and IEPs in the past have included positive feedback like, "She is an active participant in singing and dancing," "She has worked hard to gain new skills in all areas," "She can independently follow classroom routines," and "She has a delightful disposition." We also have seen positive reports of progress through the codes and numbers selected on those documents. However pleasant those compliments and grading marks are they are things we already know about her personality, determination, and progress and are not complimentary remarks about what she excels in. Written or verbal praise of Karley's academic strengths are far and few in between.

Today, I received her proposed IEP, from the educational team at school, to review before our meeting in two days. The school professionals involved in constructing her IEP consist of a general education teacher, occupational therapist, special education teacher, and speech language pathologist. The rest of her team that attends the meeting and contributes to shaping her IEP include myself, my husband and a school administrator. I flipped to the Present Level of Educational Performance page and began reading the General Education section. It started out great with compliments about her strong presence in the general education classroom, friendliness, and being well liked by peers and moved to another truth, that she demonstrates below grade level skills. After that though, it all went down hill.

I understand that the Present Level of Educational Performance page should accurately identify her current academic performance and recent assessment scores objectively. Why in the world though, does it have to be written in such a negative manner? Instead of writing, "She lacks basic readiness skills in all academic areas," it could have been noted that, "Readiness skills in all academic areas need to be developed," or instead of a negative statement like, "She requires full assistance in order to complete any kind of independent classroom work," it could have been something like, "Assistance with classroom work is necessary for completion." The IEP could also be written from a standpoint of how her disability affects her participation. The phrase, "She struggles to keep pace with her peers," could be in the form of, "Her delay affects her pace." The words we use really do make a difference.

Words are important to me. Words also play a part in how we perceive others. There is a huge shift in perception, from a child who lacks in all areas, requires full assistance in order to complete any work, and struggles to keep up with peers, to a child who needs to develop skills, receive assistance, and has a slower pace. Without saying it, it is being portrayed, that my daughter is a lackluster, needy, struggler. The way the document is written it insinuates that she will never amount to her peers by comparing her to them, instead of looking at her strengths as an individual. I would like to see her IEP build on what she does well not focus on reducing her down to deficits.

There is a lot of word work that needs to be done on this year's legal, binding IEP contract we have entered in to. This document should be agreed upon and agreeable. There comes a time when you must reconsider many things in life. One of these considerations at the present is my daughter's IEP. This will be her third year of attending our neighborhood school as a fully included student with Down syndrome with minimal pull out to special education settings, for specialist services. At this point I feel her IEP in itself should be more positive and constructive and don't feel that is too much to ask.

There is no time like the present to make it over. Karley is a learner and should be described in that way. Especially, when our neighborhood school houses a segregated, high needs program for third to fifth graders. Come June, her IEP must not reflect weakness and must focus on her strengths. Unless it is changed, the current document could be someone's proof that she belongs some where other then general education, next year as a third grader, because of the way it is written. I look forward to addressing this at our next meeting.   

Adopting: Domestically, Internationally, or Not At All

 

Adopting: Domestically, Internationally, or Not At All

In 2006, the Associated Press published an article on adoption of children with Down syndrome. It revealed that there is at least 150 people on a waiting list, at any given time, who want to adopt children with Down syndrome. Today, I have read that the number of families waiting to adopt a child with Down syndrome is 200 or more. Why has it become a trend to adopt children with Down syndrome?
 
According to the same article, our society is changing, in the way we look at people with Down syndrome. The explanation is due to a shift in acceptance, and in an increrase of inclusion, for people with Down syndrome in our culture. Individuals looking to adopt, believe children with Down syndrome are better candidates for adoption than children with other disabilities. There is also mention, that the positive outlook toward individuals with Down syndrome, is due to medical and educational advances, which is leading to fuller and longer lives of people with this diagnosis.     

Thousands of children with Down syndrome in our country need to be adopted. Fortunately, we have a system that will support children given up for adoption. It isn't a perfect system but it allows children of the state to be supported and placed into foster care. Foster families are provided to help these children grow in stable households and live meaningful lives. There are programs like the National Down Syndrome Adoption Network, that connect families to state and local agencies when they have decided to domestically adopt a child with Down syndrome, who is waiting for a family.  

Unfortunately, other countries with larger populations, have even higher numbers of children waiting for adoption. Countries like China and Russia tend not to have the resources we do here, for children waiting to be adopted, or the progressive attitudes and beliefs about a Down syndrome diagnosis. These systems rely on orphanages and institutions to handle unwanted children. The living conditions, for the children who are housed there, lack stimulation and necessary means to raise any child. Reece's Rainbow is a non-profit organization that offers donation based grants to help families adopt children internationally.     

Those who are interested in adopting may be able to receive grants through their place of employment or paid days off to travel during the adoption process. Other assistance can come through financial aid of churches, as well as, personal fundraising efforts. However, adoption isn't for everyone. People who don't want to adopt but still want to help can become foster parents or make donations to programs that help with adoption. No matter how, you can help. Your support will help a child become adopted and save their life.            

Buddy Walk 2011

Buddy Walk 2011

The National Down Syndrome Society started the Buddy Walk in 1995 to celebrate Down syndrome. The Buddy Walk takes place in late September or early October to kick off Down syndrome awareness month. About 300 Buddy Walks will take place accross the country and nearly 300,000 people will participate in a Buddy Walk this year. Buddy Walks promote acceptance and inclusion of people with Down syndrome and is an event I look forward to every year.

      

Our family has attended the Northwest Down Syndrome Association Buddy Walk in Portland, Oregon since 2004. This walk draws at least one thousand guests and celebrates with a band, food, and festivities. The first time we went to the Portland Buddy walk I was amazed. To be part of a group of one thousand people who all came to together, to share their support and love for people wth Down syndrome was such an inspirational feeling. It truly felt like we could conquer the world together-power in numbers.

In 2008, I coordinated the 10th annual Buddy Walk in Portland. It was a huge job to oversee but one of the most awesome experiences to help make happen. That year, like every, was made possible by fantastic volunteers, a dedicated board of directors, donations from local businesses, and community advocates. So much hard work goes into a Buddy Walk celebration but when it all comes together it is so worth every moment. 

This year was just as amazing as the previous! I got a chance to visit with many people, play in the fountain with my daughter, and spend a beautiful day outside with a thousand other people who joined together to celebrate people with Down syndrome. Buddy Walk is great way to build community and share all the things there are to look forward to in people with Down syndrome.