I’m summarizing and paraphrasing some of what we shared in our email exchange. My hope is that this may provide some insights to others, or perhaps give some perspective on behaviors that may appear in coming months/years with our siblings with Down syndrome.

Stairways: We noted many of our loved ones with Down syndrome are increasingly hesitant or fearful of stairs, curbs and other thresholds. One member shared that she has read and been told by a neurologist that “gait apraxia” is to be expected with Down syndrome Alzheimer’s patients.  It also may be a result of changes in depth perception; we need to be aware that people with Down syndrome get cataracts earlier (in line with the early aging phenomena). In still other cases, it might be a precursor to losing mobility altogether. Falling due to any of these issues can become a hazard for our siblings.

Doorways. We may also see a fear of doorways and or gates. It may take a lot of patience, talking, prodding and promising benefits to get the sibling to cross the threshold. New research describes the “event boundary” effect and shows that crossing a doorway or threshold actually prompts a change in activity and causes forgetfulness.

Loss of fine motor skills. One sibling reported seeing slow changes in motor skills, manifested in a loss of handwriting. Handwriting slips from cursive to block to a single mark, some reported.  I’ve seen this in my sister, who used to love to write out words — grocery lists, for example. Now she has difficulty with both the shapes of the letters (motor skills) as well as their order in the words (cognition). I also see this in her artwork, which is becoming simpler and cruder, lacking as many colors and shapes and movement of her work in earlier years.

Example of Beth's art from years past

Loss of expression.  Many of us have seen our siblings slowly losing their ability to express themselves, noticed in many forms including speaking, and even recognizing others.  Social skills — greeting others, for example — also diminish.

Loss of social skills — changes in eating and hygiene. One member reported that his brother began stuffing his mouth when eating, leading to fears of choking or aspirating food into the lungs. Others reported a change in concern about cleanliness, from not putting dirty clothes out for cleaning to refusing to wash and shower. I know of others who may simply forget the signs that it’s time to use the restroom.

Cognition skills. My sister struggles now to spell words, add numbers, and tell time. She masks this very well, however, by still wearing her watch yet always going to the microwave or a radio with digital output to find the correct time. She also forgets how to use a calendar, but can still check the date by reading a newspaper. She can read little notes written to her, but does not grasp the content beyond the moment. I try to practice these skills with her, but I don’t see it making a difference.

The lesson for me is in recognizing the changes and learning to differentiate between the ones we can affect and the ones we must accept.

Here’s a nice bright spot in our world — she received a lovely presentation and write-up from the organization, and her art work has been displayed and sold through the group. Some samples of her work should make it onto the Open Door Art Studio website soon.

Here’s what they wrote:

Elizabeth Tracewell, who generally goes by Beth, illustrates and paints bold geographic shapes in rich, vibrant colors.

Her methods are fairly systematic, with Beth applying lines and shapes in a predetermined color palette.

She rarely deviates from the original order and continues to cycle through her palette until the surface is full of bright patterns.

She has been an artist as long as she can remember and her signature style has been refined to the point of instant recognition.

Beth is a native of Columbus and she has been employed with her local public library for over 20 years!

She is very close with her family and loves to spend her free time on family field trips and doing crafts, especially latch hook.

Two items of note:

• Alzheimer’s Disease and Intellectual Disabilities
  A  program for family members of persons with the dual diagnosis of Alzheimer’s disease and an intellectual disaility, such as Down Syndrome that focuses on special care decisions and maintaining positive connection throughout the disease process.

  March 12 (2012)
  10:00 – 11:30 a.m.
  Call for location

• Mollie Tivol Alzheimer’s Family Resource Center

  The Resource Center is located in the main office and open Monday through Friday from 8:30 a.m. to 5:00 p.m. to provide books, brochures, videos and other resources on Alzheimer’s for loan or purchase. All offices have access to these resources and also offer a variety of informative material at their locations.

Down Syndrome Research Hub Takes Flight

Here’s a nice website that might interest our followers: Down Syndrome Footprint.

Note the unique logo. Here’s the explanation from the website:

“Down Syndrome Footprint Foundation is an organization that celebrates the lives of individuals with Down syndrome by using the Down Syndrome Footprint symbol. This symbol with the space between the big toe and the little toes is the first symbol both nationally and internationally that is specific to Down syndrome that is not an awareness ribbon and is an actual medical marker of Down syndrome. This footprint symbol is both unique and attractive and allows us to answer questions and educate society and the world of the facts and future of Down syndrome.

“The Down Syndrome Footprint Foundation is committed to creating greater awareness, empowerment and employment opportunities for all individuals with Down syndrome.”

My favorite part is the messages from parents to others. They apply not just to families with individuals with Down Syndrome, but serve as a good reminder to any of us:

• You will experience joy/rewards
• There will be struggles/challenges
• You will experience love

Here’s the report:

Parents, Siblings, and People With Down Syndrome Report Positive Experiences

BOSTON, Sept. 21, 2011 /PRNewswire via COMTEX/ — Survey results may inform decisions about prenatal testing

Three related surveys led by a physician at Children’s Hospital Boston suggest that the experience of Down syndrome is a positive one for most parents, siblings and people with Down syndrome themselves. The results, published in three reports in the October issue of the American Journal of Medical Genetics, may serve to inform expectant parents and clinicians providing prenatal care.

“New prenatal tests for Down syndrome are set to come out as early as the end of this year,” says Brian Skotko, MD, MPP, a clinical fellow in genetics at Children’s Hospital Boston. “Many more women will then learn about the diagnosis prenatally and will need to grapple with very personal pregnancy options. In previous surveys, mothers have reported receiving inaccurate, incomplete and occasionally offensive information about Down syndrome from their healthcare providers.”

Skotko and collaborators Susan Levine, MA, CSW, of Family Resource Associates (Shrewsbury, NJ) and Richard Goldstein, MD, of the Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, sent surveys to 4,924 households on the mailing lists of six nonprofit Down syndrome organizations around the country. The surveys asked respondents to rate their agreement with statements on a scale of 1-7, and also included some open-ended questions.

The first study evaluated surveys from 2,044 parents or guardians, representing an estimated response rate of 29 percent. Its findings:

• 99 percent of parent/guardians said they loved their child with Down syndrome
• 79 percent felt their outlook on life was more positive because of their child
• 5 percent felt embarrassed by their child
• 4 percent regretted having their child.

The second study evaluated responses to similar questions from 822 brothers and sisters age 9 and older (estimated response rate, 19 percent). Of the siblings age 12 and older:

• 94 percent expressed feelings of pride about their sibling
• 7 percent felt embarrassed by their sibling
• 4 percent would “trade their sibling in” for another
• 88 percent said they felt they were better people because of their sibling with Down syndrome

Of siblings aged 9-11:

• 97 percent said they loved their sibling
• 90 percent felt their friends are comfortable around their sibling

The third study evaluated survey responses from 284 people with Down syndrome (estimated response rate, 17 percent). The average age was 23, and 84 percent were living with one or both parents/guardians. The findings:

• 99 percent said they were happy with their lives
• 97 percent liked who they are
• 96 percent liked how they look
• 86 percent indicated they could make friends easily
• 4 percent expressed sadness about their life.

“As international discussion is mounting over the new prenatal tests, family members have now had their say about life with Down syndrome,” says co-author Levine. “And, more importantly, the people with Down syndrome themselves have clearly stated that they consider their lives valuable.”

In open-ended questions, parents reported learning a variety of life lessons – the top five being: personal self-growth, patience, acceptance/respect, love, joy. Asked what they would tell other prospective parents of a child with Down syndrome, the top responses fell into these categories:

• You will experience joy/rewards
• There will be struggles/challenges
• You will experience love
• Important to identify good support group/resources
• Children with Down syndrome are more alike than different from typically developing children.

Siblings, asked what they would tell prospective parents having a child with Down syndrome, most often conveyed that the experience would be joyful and rewarding, though many also said there would be challenging moments.

Respondents with Down syndrome most often gave these kinds of messages for parents:

• Love your baby/your baby loves you
• Life is good/happy to be alive/positive
• Don’t worry/it’s okay.

Their main messages for doctors were:

• Life is good/I’m happy to be alive/positive
• Please take care of our medical needs
• Please give information to parents about school options for people with Down syndrome
• Value us/we’re okay.

The researchers acknowledge that the surveys are subject to selection bias, since members of nonprofit Down syndrome groups may not be representative of the general population of Down syndrome families; respondents were largely white and middle to upper class. There is currently no population-based registry for people with Down syndrome.

“Prenatal decisions about Down syndrome present profound and deeply personal challenges to expectant parents,” says co-author Goldstein. “What has been missing has been the perspective of those living with Down syndrome. This study now provides the largest and most comprehensive portrait of life with Down syndrome to date.”

The studies were supported by grants from the Tim White Foundation, the Fred Lovejoy House-staff Research and Education Fund, and the Joel and Barbara Alpert Endowment for the Children of the City.

Children’s Hospital Boston is home to the world’s largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 1,100 scientists, including nine members of the National Academy of Sciences, 11 members of the Institute of Medicine and nine members of the Howard Hughes Medical Institute comprise Children’s research community. Founded as a 20-bed hospital for children, Children’s Hospital Boston today is a 396 bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children’s also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about research and clinical innovation at Children’s, visit: http://vectorblog.org.

Thanks to Christine Taylor for bringing this to our attention.

There is no information available currently on employment and unemployment status for adults with Down Syndrome. There is no information describing where people work and the kinds of jobs they do.

We all need that information to document the current situation and advocate for job training programs, funding, and more variety and choices in jobs.

The purpose of Libby’s survey is to begin to collect that information.

Please fill out the survey, whether your adult sibling or loved one with Down Syndrome is working in paid or volunteer jobs, not currently working, or is in a training program to prepare for a job. The survey is designed for parents or caregivers and their adult loved one with Down Syndrome, ages 18-50.

Please help us spread the word about the survey — share with anyone you can, please feel free to repost and send the link to your friends.

The survey will be online at Survey Monkey through Dec. 31, 2011. Your response is important. Together we can make a difference.

Find the survey here: https://www.surveymonkey.com/s/RK5SWWS

There are no names required, and all information is confidential. When you sign on and complete the survey, you consent to the information being used for research and educational purposes.

(Editor’s note: I took the survey; it’s brief and quite painless. I encourage all to participate.)

Also see the Motherlode blog — a challenge to idea that Down Syndrome needs a cure.

Don was in Kansas City to teach the techniques of running workshops for the siblings of developmentally disabled people. I expected to hear about issues of guardianship, health concerns, behavioral issues, overwhelming concern for challenges that loom large in so many families.

I had no idea it would be such a joy.

Don’s presentations are a delight. He is exuberant and funny, using humor and silliness.

He had the crowd of about 150 people do an exercise, without speaking, to sort ourselves into teams of “one’s,” “two’s” and “three’s.” The skeptical crowd got up reluctantly, some members heading for the doorways to slink out, but within three minutes, we were not only laughing out loud but holding hands in long conga-lines winding through the conference room, circling the round tables neatly organized. The simple handshake exercise forged bonds.

What did all this have to do with dealing with the many challenges of caring for a developmentally disabled family member?

Nothing, and everything. His workshops, he pronounced, are “unabashedly playful.”

“We have fun,” he explained. The workshops give siblings a chance to meet other siblings; there’s no “therapy,” just sharing experiences and feeling OK about it. You can’t underestimate how important it is to connect with others in similar situations.

My friends and I (all with siblings with Down Syndrome, from our own home-made support group) have been sharing stories and trading tips — how to measure signs of dementia, how to address changing health needs.

His advice to us? “Have wine at your meetings,” he said. “Make sure you have lots of laughs.” We left that day with an appreciation of the light touch.

In the same way that a whisper can be more compelling than a shout, so can a shared laugh be more powerful than the sobering narrative.  I’m thinking of a favorite quote from Maya Angelou that works to illustrate this:

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

(Reprinted from NancyShawver.com)

See the full article, or below for a summary. Also see the background on this issue, driven by Jaret L. Vogel.

After years of behind-the-scenes advocacy by a Florida couple, Congressman Ted Deutch (D-FL) recently introduced a bill that would provide a tax credit of up to $5,000 for people who incur legal expenses while pursing a guardianship of an adult with disabilities.

Pursuing a guardianship often involves thousands of dollars in legal fees and many months of hard work. Unfortunately, many people are dissuaded from hiring counsel to assist them with a guardianship because of this cost. The benefits of working with an attorney to pursue a guardianship are clear: experienced special needs planners know the guardianship process inside and out, and will make the often overwhelming and time-consuming pursuit easier for everyone involved. Yet many people choose to proceed without representation, often to the detriment of themselves and their loved ones.

 The proposed legislation provides people an added incentive to work with an attorney on a guardianship. If passed, the so-called “special needs tax credit” would give qualified individuals a tax credit (not a deduction) of up to $5,000 for their guardianship-related legal fees. (For an explanation of the difference between a credit and a deduction, click here.) The amount of the credit is based on the proposed guardian’s income, with an income limit of $90,000 for a single person and $165,000 for a married couple filing jointly. Single people with incomes of less than $75,000 and married couples with incomes of less than $150,000 would receive up to the entire $5,000 credit, with the available credit being reduced as incomes go up.

In a press release explaining the benefits of the proposed credit, the Special Needs Tax Credit Alliance, which was established to advocate for the legislation, explains an additional benefit of the tax credit. According to the Alliance, “[t]he Special Needs Tax Credit Bill is designed to make the guardianship process more affordable for more families. If the family can find the funds for legal expenses short-term, knowing it would be refunded, more persons who need a guardian would have one, and consequently less strain on the state court system to appoint a guardian ad litem, or emergency guardian, if none exists. Hence, a savings to the court system.”

I wonder how the bill would be funded? I wonder if it has even a chance of consideration?