Future archives

Slice of Life

March 21, 2014 in Future

Many expectant parents would like to see a glimpse of the future with their child with Down syndrome, beyond the lists of medical possibilities. While each family and individual with Down syndrome is unique, one thing most of us can agree on is that the reality of living with someone with Down syndrome is much different than we imagined on that diagnosis day. And that reality is often remarkably ordinary—including soccer practice, sibling squabbles, birthday parties, and snuggles and popcorn during a movie.

While it’s true that some time usually needs to be devoted to speech or physical therapy visits, those visits become part of a daily routine. Speech therapists who come to our homes often become dear friends, and physical therapy appointments may become that time of day where we run to the grocery store. And while it’s also true that our children may have medical issues, some more or less than others, the time spent dealing with those medical conditions is usually a very small slice of a much bigger pie.

Once our children with Down syndrome start developing their own identities, it can sometimes be shocking how they shed those identities we originally envision as new and expectant parents. When my own son was born, I remember writing down everything that scared me: people making fun of him, having other children, having him live with us as an adult, and losing the vision of a child going to college and having a career.

Now at 14, he’s very popular — boys from school show up at my house to play basketball and give him “bro hugs” at the bike trail when they run into him. He has two younger sisters who are 11 and 7, and our biggest challenge there is making sure the girls don’t go in his room without asking and making sure he doesn’t call his younger sisters “embarrassing” and “annoying.” And even though I’m fairly certain he’ll need some help as an adult, he already keeps bags packed in his closet hoping that he’ll get to move to the beach with his best friend someday. There are also now 220 college programs for students with developmental disabilities, and Andy is determined to go and has already shown real promise as a photographer (who has already had an exhibit in Russia and won the PTA Reflections Photography contest for the past 4 years). We also spend our summers as a family on the mountain bike trails.

Andy Bites Edit from southernj on Vimeo.

If you had told me all of this when I was a scared 23-year-old first receiving the diagnosis, I never could have pictured that this was what the future held.

Experienced parents, will you share a peek into your lives?  Start with your child’s name and age, and give our expectant parents a snapshot of your present to help them envision their future.  Expectant parents are welcome to ask questions as well.

Read about “A Day in the Life” of other moms here:

Who was I then? Who am I now?

February 24, 2014 in Emotions, Future

After giving birth to a child with Down syndrome following a prenatal diagnosis, parents often reflect about how their children with Down syndrome have influenced their lives, their perspectives, and their appreciation for what life has to offer. Expectant moms are often worried about the impact on their lives and families. When baby’s smile and coos are not here yet, often the predictions about impact tend to be negative. While some of moms do have confirmed and possible medical issues on the horizon, worries about such things as these can sometimes take over perceptions of the future.

The moms below share how their child with Down syndrome has changed them …  where they started, where they are now, and how their child has changed the way in which they view themselves, their family, life, and disability.

You can also read a diverse range of stories from sixty-three mothers of children with Down syndrome in GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.

The first year: reflections and advice

January 15, 2014 in Future

Many of our expectant moms are ready to deliver, and they could use some “been there done that” advice on the first year of a child’s life.  Were there things you did worth sharing with expectant parents?  Did you have missteps or regrets?  Have you learned of things since that time that you wish you had known then?

Missy has a great blog post on what she did with her daughter Violette in the first year, a great read for expectant moms to tuck away for later.  She talks about attitude, developmental charts, signing, tummy time, and much more.   Let’s hear from other experienced parents about the lessons they have learned.

What will baby need? (It’s a Baby Shower!)

July 31, 2013 in Friends and Family, Future

Katie Ryder with her grandmother Lona Kewley

Experienced moms, help our expectant parents with their baby registry! What items did you use during infancy that will be a big help for new parents of a baby with Down syndrome? Expectant moms, ask follow-up questions, or talk about the supplies you have already.

Lets get the list started with a few of our “must have” items:

Two products for congestion are an absolute must, the NoseFrida, otherwise known as the snot sucker (I know, it looks gross, but trust us), and saline mist.

And since research shows the benefits of sign language for our kids, put Signing Time videos on your list. The videos are fun, the songs are catchy, and your other kids will enjoy them too.

Finally, every parent of a child with Down syndrome should have a copy of Will Schermerhorn’s DVD “Down Syndrome – The First 18 Months.”  Check out Will’s website to order the film.

There are many items that can be specifically helpful for babies with Down syndrome, but experienced parents of infants with Down syndrome also emphasize that they need or want the same things any baby needs. So, please help us by sharing items you found particularly useful for a baby with Down syndrome and also those things you found generally helpful, wonderful, beautiful, or clever.

We have lots of great suggestions below and would love to hear more!

What Parents Wish They’d Known

May 1, 2013 in Emotions, Future, Resources

Kathy Soper collected thoughts from experienced parents, and through the generosity of publisher Woodbine House, this collection of parental advice is available free on the Woodbine House website.

We do link to this booklet in our book, but an extra tidbit is that my thoughts about my daughter Gabby are recorded there. What did I wish I would have known about Gabby? Check out my quote from the booklet:

I wish I’d known that I would say and feel so often, “You’re so smart!” or “You are the cutest kid in the whole world!” I wish I’d known I would use words like “sparkling,” “vivacious,” and “infectious laughter” when describing my child. I underestimated her.

While you are over at Woodbine House, check out the amazing list of Down syndrome resources that they have available.

Twins

January 9, 2013 in Birth Plans, Future, Health Issues, Post-Diagnosis Health, Resources, Siblings

We sometimes have expectant parents awaiting the birth of twins, and one or both babies have Down syndrome.  If you have twins, will you help our expectant parents?  How was your birth plan different?  Did the logistics of a twin birth cause extra complications? Are there any differences in parenting that you see? In what ways is it more difficult?  In what ways is it beneficial?  If you have a blog or website that pertains to twins and Down syndrome, please share.

We will start off suggested resources by mentioning Jen Graf Groneberg’s Roadmap to Holland.  Jen gave birth to twin boys, one with Down syndrome, and wrote of her early experiences.

Another resource is a blog by Eric Waksmunski, dad to twin boys with Down syndrome.

Another guest post by Vicki Vila on Amy Julia Becker’s “Thin Places” blog gives a unique and insightful perspective about fraternal twins where one has Down syndrome and the other does not. Vicki Vila’s blog can be found at www.modernmessy.wordpress.com.

Let’s hear some more resources, and any personal experience.

Vicki Vila

Organization & Preparedness 101

March 23, 2012 in Birth Plans, Future, Health Issues, Medical Provider, Post-Diagnosis Health

Pregnancy post-diagnosis is often a blur of medical appointments, especially late in pregnancy.  Expectant parents receiving co-care from several health care professionals may see multiple doctors in an obstetrics practice and multiple doctors in a maternal-fetal medicine practice.  There may be a lists of tests, lists of questions, scraps of paper with phone numbers.  We highly recommend making an organizational plan to keep track of all of your medical information during pregnancy.  Parents should purchase a a binder/ notebook to keep track of dates, medications, doctors, tests, results, questions, and answers. Include your birth plan as well.  Ask your doctors for copies of your medical records, especially the karyotype, which shows the baby’s chromosome count.

You may also want to start a binder for the baby, starting with the karyotype and a summary of the pregnancy.  Keep track of all medical personnel, tests, etc. connected with the baby in this binder.  Some items which may be helpful to start are the following:

The Down Syndrome Growth Charts

The Down Syndrome Health Checklist
(The health guidelines have been recently updated – download HERE)

The Down Syndrome Developmental Charts

Blogger Ria provides amazing advice on creating an organizational system, with extremely helpful links and step-by-step instructions.

(original post March of 2011)

Diagnosis Day: Parents, what would you say to your past self?

March 12, 2012 in Emotions, Future

Taylor loves ballet!

For so many of us, the day we received a diagnosis for our child with Down syndrome is a day of shock and sorrow. We moved forward from that time, and have grown along with our children. In the book The Time Traveler’s Wife, the main character travels back in time, and at one point tells his doctor that the doctor’s unborn child has Down syndrome. “He’s a wonderful boy,” is the attempt at reassurance from the time traveling friend. Having spoken to so many expectant parents, I can say that this bland generalization is not enough for those facing that raw time of fear of the great unknown. Parents often thirst for so much more.

We talk about “what to expect” so much on our blog and discussion board on Baby Center. NICU stay, prenatal monitoring, medical care, government services – the list goes on. Practical. Informative. Useful. But of course information is simply not enough. We need to mix it up with some personal experience, which we do through our blog comments and discussion board posts. Experienced parents, if you could travel back in time and meet yourself on that day, what would you say? What would your past self need to hear about your child, your life, your family?

Mom and blogger Patti provides a particularly beautiful glimpse into the life of a family which has a child with Down syndrome here.

Darci Howard of BYU tv’s Fresh Take also interviews blogger and author Kelle Hampton, who is also one of our pregnancy book photographers. Expectant parents grappling with intense emotions may identify with Kelle’s account of those first few hours after she learned baby Nella had Down syndrome. But keep watching, and you will hear of the transformation of those feelings, and catch a glimpse of cute baby Nella at the end of the interview.

Interview: http://byutv.org/watch/8303febf-8c13-4a43-a645-99439d54f350 (starting at 17 minutes)

Kelle’s blog: http://www.kellehampton.com/

Kelle’s story of Nella’s birth: http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

You can also read stories from other moms and dads around the world who received a prenatal or postnatal diagnosis at Unexpected Stories of a Down Syndrome Diagnosis.

The Shape of the Eye (book review)

February 8, 2012 in Dads, Diagnosis, Emotions, Future, Health Issues, Resources

The Shape of the Eye by George Estreich is one of my favorite books and I recommend it highly for those who have a loved one with Down syndrome (or will soon!) and for anyone who loves books. I wanted to have written a beautiful book review worthy of his work, but I find that the time eludes me. However, Lisa Morguess has written a lovely review for you to enjoy on her blog Turn the Page, and as a bonus has an interview with the author on her personal blog Life as I Know It. Read Lisa’s review and George’s interview, buy the book and devour it, and when you love it as much as we do, vote for The Shape of the Eye in the Oregon Creative Non-Fiction category.

Lisa Morguess’ review: HERE
Lisa’s interview with George Estreich: HERE
Buy the Shape of the Eye: HERE

Financial Planning for a Child with Down Syndrome

August 31, 2011 in Future

by HERBERT D. HINKLE, ESQ.

Learning that your child has Down syndrome can initially be devastating.  However, the reality might be very different than anticipated.  I am reminded of a client whose son had Down syndrome.  After retiring, the father mentioned at dinner one evening that he was bored.  His son volunteered that he could get him a job at the place where he worked.  The next day the son’s manager called, stating that if he was as good a worker as his son, he would be delighted to hire him.  This father observed that when his son was born he thought it was the end of the world.  Now, 35 years later his son is finding him a job.  However, optimism and success do not eliminate the need for planning.

Generally, estate planning in this area will involve making sure that anything left to your child with Down syndrome does not cause ineligibility for key government benefits which are based on the value of the assets your child owns.  The most important of these benefits are Supplement Security Income, Medicaid, and state programs for adults such as those involving supported employment and housing.  The national trend is toward self-directed services, meaning that instead of a placement, an annual budget is provided so that the family can make their own arrangements.

After your child with Down syndrome is born, you should establish a special needs trust to hold what you and other family members (e.g., grandparents) might leave when they pass away.  Do not create a bank account or otherwise place assets into your child’s name.  Unless there is a compelling tax reason, such trusts are not funded until death.  An ideal way to ensure funding is to purchase life insurance, sometimes on the lives of both parents (joint survivorship). Grandparents wishing to help might pay the premiums.  Not all special needs trusts are the same and parents should make sure that they use an attorney who has both an estate planning background, and also experience with the service system.

This is not something you should worry about now during your pregnancy.  You can wait until after the baby is born to meet with an attorney.  However, you may wish to advise friends and relatives giving monetary gifts when the baby is born that checks should be in your name, not the baby’s.

Making a plan for a special needs trust in no way presets your child’s future.  However, it does protect against ineligibility for benefits your child may need some day.  In the years following the creation of the special needs trust, you should keep in touch with your attorney to keep abreast of changes in the law or circumstances unique to your family which may require a second look at the plan.

Mr. Hinkle has represented people with disabilities since 1974.  He is the founding partner of Hinkle, Fingles & Prior, PC with offices in New Jersey and Pennsylvania.  Mr. Hinkle has served on the boards of a variety of non-profit organizations in the disability field.  He is an adjunct professor of law at the Rutgers School of Law – Camden, teaching trusts, estates and taxation. For more articles on related topics see the website of Hinkle, Fingles & Prior, PC.

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