Siblings Speak Out: Jennifer Meyers Bekins, MS, CCC-SLP

December 3, 2013 in Siblings

SIBLINGS SPEAK OUT
Dreams realized: the gift of Down syndrome
Jennifer Meyers Bekins, MS, CCC-SLP

As a nine-year-old little girl with two younger brothers all I wanted was to have a sister. I wished on stars, birthday candles, and dandelions for one. Then one day my mom came in my bedroom and wrote this in my diary:

August 24, 1987

“Mom told me she was pregnant.”

Yes! Pregnant! And I knew it was a girl. Not because we found out at the 20-week ultrasound. I knew all those wishes and prayers had finally paid off. And when she was born and I saw her fluffy blonde hair and big blue eyes. My parents even used the name I had chosen, April Joy, which like my new little sister, was perfect.

I found out soon after she was born that April had Down syndrome. I can’t remember if I knew anyone with Down syndrome. When April was nine months old I wrote that same diary:

January 18, 1989 1:45 pm

“Dear Diary, I’m sick with a stomac flue. I don’t have very much homework. My   sister April Joy has Down syndrome! It’s not bad. You want her ex-tra chromozone?”

I remember asking my father and aunt if having Down syndrome meant April was “R-E-T-A-R-D-E-D?” My father was very gentle in his answer telling me he didn’t know. That she would probably learn things slowly. That he and my mother would love her just like us. She was one of us – family.

Even though I knew April had Down syndrome she was still perfect in my mind. She just had this one little thing we needed to “fix.” At least that’s what I thought therapy was. The therapists were going to make Down syndrome go away. As an adult I realize that Down syndrome is part of who April is – and it’s not going away. And neither are her blue eyes or blonde hair. It’s one of the many things that make her who she is as a whole person.

“Will my children have a true sibling relationship with my child with Down syndrome?”

April is my sister. We’ve had our share of laughs and fights. But we enjoy just being sisters. She can talk to me about her love life and I can vent about our mother. Sisters.

My relationships with my youngest brothers Jacob and Sam are very different, not because they are adopted and have Down syndrome, but because of the large age difference. I moved away when they were only two and six years old, so I’m more like a close aunt. I’ve been happy to get to know them in their “teens” since they moved to Cincinnati with my parents and sister.

It is said that the sibling relationship is the longest relationship we experience. Parents of children with Down syndrome can nurture this relationship in the following three ways:

First, expect your children to be children together. Encourage game play, dress-up, dancing, sleeping bag camp-outs in the living room. Depending on age and birth order some children will are more likely to be little-mothers – they want to do everything for their sibling with Down syndrome. I was this way given a 10 year age difference between April and me, being the oldest, and being a girl. Make sure the sibling does not have too many responsibilities changing the role from sibling to helper or additional parent.

Second, create an atmosphere of consistency. Tell all the children in the household about your behavioral expectations. Some make a list of family rules that no one is allowed to break, including your child with Down syndrome. Statements such as, “Your sister doesn’t understand. She has Down syndrome,” will only foster frustration and resentment. Children with Down syndrome learn these exceptions early on much to the annoyance of their siblings.

Finally, understand that your child with Down syndrome is one member of the family. Make decisions that are for the best interest of the family and everyone will benefit. You will need to examine your financial decisions and preparations for the future. Decide with your spouse or partner how you are going to delegate time.

“Will a child with Down syndrome will take up a large amount of parental time, depriving the other children of attention?”

Doctor appointments, therapy visits, and school involvement may involve time away from other children. Talk with your children about how this makes them feel. Listen to them, give them support, and understand it is okay if you don’t have all the answers. Balance time spent on one child with a family movie, game night, or a “date” alone with each of your children.

I’ll be honest. We went to a lot of therapy visits, but my mother and siblings’ therapists did an amazing job including me the process. Conversely, April was included in our lives too. She came to swim team, basketball games, and soccer tournaments. We were a family. We enjoyed life together.

“Will my other children be prevented from achieving their dreams and having a normal life?”

I never thought, “Now that my sister is born I’ll never enjoy the life I was meant to live!” No, my life has not been normal. It’s been atypical – and richer, and fuller than I ever thought imaginable. My brothers Derek and Dan are in very different fields of study from my own, living full lives. Living with April, Jacob, and Sam did not prevent us from achieving our own, very different, dreams.

Now that I’m married and have two sons I appreciate my siblings with Down syndrome even more. The relationship my sons have with my siblings with Down syndrome is different than with my brothers without Down syndrome, but that doesn’t mean it’s any less important. In fact, being involved as an adult with my siblings with Down syndrome has provided my children life-lessons on topics like acceptance, disability awareness, fairness, and civil rights.

“I’m afraid there will be only negatives, no positives, of having a sibling with Down syndrome.”

It is my hope that my perspective has alleviated this concern. It’s been nearly 23 years since April was born so I have the benefit of looking back on our childhood together. There were and continue to be laughs and tears, fights and late night chats. I did not choose to have a sister with Down syndrome and neither did my parents, but my wish did come true. She just came with something more than I’d expected.

Jennifer Meyers Bekins, MS, CCC-SLP,  is a Speech Language Pathologist at The Jane and Richard Thomas Center for Down Syndrome, part of Cincinnati Children’s Hospital Medical Center.  She has five siblings: Derek (30), Dan (27), April (22 with Down syndrome), Jacob (18 with Down syndrome), and Sam (13 with Down syndrome).

Jennifer maintains Communication Skills for Life, a speech-language resource blog for parents, professionals, and friends of children with Down syndrome.

CLICK HERE to make comments on this essay.

Expectant parents have many concerns, including their other children.  Parents ask themselves hard questions such as, Will my other children be prevented from achieving their dreams and having a normal life?” Our pregnancy book references the research on positive impact on siblings, but today we start a new series, “Siblings Speak Out” to hear first hand sibling perspectives.  Our first guest is Jennifer Meyers Bekins, MS, CCC-SLP.  Jennifer is a Speech Language Pathologist at The Jane and Richard Thomas Center for Down Syndrome, part of Cincinnati Children’s Hospital Medical Center.  She has five siblings: Derek (30), Dan (27), April (22 with Down syndrome), Jacob (18 with Down syndrome), and Sam (13 with Down syndrome).

CLICK HERE to read Jennifer’s advice to you.

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9 Responses

  1. Sarah says:

    Thank you so much, Jennifer, for sharing your experiences with us. It’s especially helpful to hear your perspective as an adult with now adult siblings.

    One of my first concerns when Adam was born and diagnosed with Down syndrome was how this would affect Rachel, who was three at the time. In the short term, I found it didn’t really affect her or their relationship much at all.

    Now that Adam is the middle of our three teenagers, I have a clearer picture of the impact. In our house, the impact hasn’t been very big. Occasionally Rachel or John believe that Adam has received special treatment if the consequences he receives for misbehavior are different. What I try to point out is that the consequences are different for each of them because they each learn differently and are motivated by different things.

    I have been able to have serious conversations with each of them at times and they do sometimes have questions or concerns but most of the time, they act as though Down syndrome isn’t an issue for them, only for me.

    Several years ago my husband and I were providing support to new parents who were grieving the fact that their new daughter has Down syndrome. After a few months, the mother told me that they would like to meet our kids, to see what their relationships were like so I invited them all over to our house for pizza. When I told my kids about this, they weren’t excited because there wouldn’t be kids old enough to play with. Rachel was probably 12 or 13 at the time so I explained that they wanted to see if Adam having Down syndrome made a difference in their relationship. She told me, “No, I hate both my brothers equally.” Not the warmest or most pleasant sentiment, but there was a truth in there buried under the feigned animosity. The truth was that the relationships between siblings are complicated and sometimes messy but in our house, Down syndrome isn’t a big factor.

    I will be interested to see if or how this changes as our kids grow up. My guess is that it will change in some ways but I am optimistic that they will all appreciate and enjoy one another more once they aren’t under the same room, as seems to happen with most siblings.

  2. Amy says:

    Thanks, Jennifer, for your thoughts on having siblings with DS. One of my first fears when we were diagnosed prentatally was that I wouldn’t have enough time anymore with my older daughter, that our life would be dramatically different, that she would resent her little sister, that my kids wouldn’t have that “normal” sibling relationship.

    In fact, my older daughter was SUCH a good sister from day one. She was one of those little “mommies” you mention, and she took care of her little sister with such pride. My girls are 3 years apart (almost to the day), and they are very close. They have sleepovers, bake together, share playdates, watch movies together etc. They are also their own individual selves, and we do try to let each of them shine on their own. My older daughter is 10 now, and delving into that not-so-wonderful preteen existence that can be marked by feelings of insecurity, adults not understanding them etc. She’s going through some typical independence-building stuff, but even so, she’s not more resentful of her little sister than I think she would be if she didn’t have DS. Most times, she’s incredibly patient and caring with her.

  3. [...] immediately disappeared.   She had written it for some other blog and now it is copyrighted but I could leave a link to her blog.  Is this the time to remind her about the 23 hours I was in labor with her and didn’t have [...]

  4. Elizabeth says:

    I love Jennifer’s essay and I agree entirely with the positive message she conveys. My older sister has Down Syndrome. She is the single most influential person in my life. In fact, she inspired my husband and I to adopt a baby with Down Syndrome. I firmly believe that our future childrens’ lives will be forever enhanced and enlightened because of their big sister – just as mine was. I blog about our experiences here:
    http://confessionsofthechromosomallyenhanced.blogspot.com/

  5. I found your blog while googling the topic of “siblings with Down Syndrome” earlier today.

    I just started to read it this evening and immediately stopped because it started off so much like my own story, I didn’t want to, even subconsciously, pick up on anything of your’s before I completed my own blog for National DS Awareness Month. :D

    I am both the caregiver/sibling, and also former foster parent of a child with DS and her sister.

    I will be contacting you shortly about being a guest on my internet radio show “HEART Talk with Ms. E” on BlogTalk Radio during the month of October and/or November, as well as a potential contributor to my upcoming book about siblings and/or caregivers of DD children and adults.

    Hearts & Blessings for your work! :D

  6. [...] article about what it is like to have siblings with Down syndrome. You can read the article over at Down Syndrome Pregnancy  where it was first [...]

  7. [...] J. Dreams realized: the gift of Down syndrome. Down Syndrome Pregnancy, February 17., [...]

  8. Megan DiPrete says:

    My 60 year old Down Syndrome brother was the first-born in our family. He lives with one of our sisters (also his guardian) a few blocks from me. And other siblings and parents are within about a half-hour drive. (And still others are much farther away).

    We seem to experience little of the “sibling” relationship. Even with my sisters and other brother, our relationships might be first due to our family bloodlines, but our interactions are driven by mutual interests, experience and care.

    My brother Andy falls into this category as much as any other siblings.

    Of course, there are the additional responsibilities for his never-ending care, and his full engagement with family and community. And it IS additional responsibility, particularly for my sister and her husband (his primary caregivers) who make sure that he is not alone for extended periods, and ensure his meals, etc. But he keeps us focused on the important things in life – being together, sharing in chores and shopping and eating out, enjoying family birthday parties and holiday celebrations and going to his annual awards banquets!

    They say that “It takes a Village” and indeed Andy has a network of close family who pick him up after a recreational program, bring him to the doctor for a regular checkup, decide to have an upside-down-meal (dessert first!), go jet-skiing at a friend’s house, inflate the tires on his tricycle, etc etc etc etc.

    His presence in my life is a gift, as much as any child or other incredibly special person is or could be. I grew up learning to accommodate other people not by going out of my way but by realizing that the norm is a mid-point, not a requirement.

    A most humbling moment in my life was when I was talking with a friend of mine who’s right arm was in a sling. I introduced my brother, who reached out to shake hands — with his LEFT hand!

    Yes, he is a gift to us, every day, even as we in our 50′s. And I’m fortunate enough that our lives are very connected, and I get to enjoy his presence in my life many times each day!

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