Down syndrome from a father's perspective.

Seven suggestions for improving your relationship after having a child with Down syndrome.

Twenty-years and counting

On July 31 of this year my wife and I will be celebrating our 20th wedding anniversary. I am thankful for her; she is an amazing woman with so many strengths and gifts. Having a child with Down syndrome is not something she, or anyone for that matter, ever imagined but she is a great mom to Treyton as well as our three daughters. Also, she is beautiful! I can truly say, “Treyton’s mom has got it goin’ on!”

Disclaimer about Mars and Venus

I began writing this post almost a year ago. Maybe not this exact post but it was a year ago that I began to write something about how Down syndrome impacts marriage. The fact is, marriage is not easy. That is not a negative on my wife because trust me, she will say the same thing. We are committed to each other and have been through a lot of hard, challenging things together. Yet, after 20 years of marriage and 4 years of dating, I am still with my high school sweetheart. She is the one for me. Life is not easy and going through it with another person can be difficult but the benefits far surpass the negatives.

The other day I saw a clip on T.V. where Ben Affleck made a comment about marriage being work or working on marriage or something like that. Apparently that was a big deal. I am not sure why but it’s true. Why would anyone think it would be easy for two lives to become one like they are supposed to in marriage? Every human being has a unique perspective and when there is also a gender difference that perspective can often be that much more different.

A father’s perspective on Down syndrome

I can remember riding on the lawn mower just two or three months after Treyton was born and feeling misunderstood and frustrated. I was not upset or sad that my son was born with Down syndrome like many parents are. Yet, I did have questions about how I could best meet my son’s needs as well as questions about dealing with my other kids and my wife. When I searched for help and resources it seemed like everything I found was either written by a woman (and by default coming from a woman’s perspective) or geared toward women as the primary audience.

The frustration that I was feeling helped to motivate me to begin this blog as a way to express my feelings and hopefully help others along the way. That frustration is also the reason that I so willingly participated in a survey focused on fathers of children with Down syndrome. I filled out that survey last year but had not heard anything about it until a couple of weeks ago during a webinar organized by the National Down Syndrome Society.

Strengthening Your Relationship

The NDSS offers monthly webinars that cover a variety of topics; they are free to anyone that registers. I participated in one quite a while ago but it has seemed that anytime there was one being offered I was not able to attend. However, despite being busy at work, I felt like the May 22, 2013 webinar covered a topic that was important enough to me that I should make the extra effort needed to take part.

The webinar was titled, “Strengthening your relationship: Perspectives from mothers and fathers raising children with Down syndrome.” After 20-years of marriage I have come to realize that your relationship with your spouse is something that can always use some work so I registered. I was pleasantly surprised to learn that the presenters were the people responsible for the survey I took last year about dads and Down syndrome (Laura Marshak Ph.D. and Courtney Williams).

After attending the presentation I knew that I needed to write something about it. Below you will find seven observations/suggestions/highlights or whatever you want to call them. They are seven ideas that were presented in the webinar that I try to elaborate on them. You can find a video recording of the original presentation as well as the slides available for download on the NDSS website.

Seven ideas about marriage and Down syndrome

1. The connection between parents needs to be about more than just the kids.

I didn’t find this to be a revolutionary idea but it is a good reminder. We need to step back and try to remember what life was like before kids. Can you? It’s tough for me. The presenters also encourage you to protect more than just the romance. Sure, the romance needs to be protected but they also wanted to emphasize the importance of each partner keeping his/her personal identity. You fell in love with a person and that is why you chose to marry him/her. That person had and continues to have unique likes and dislikes, interests, etc. Make sure to help your spouse set aside time for that one hobby, whatever it is.

2. Children fundamentally change marriage.

One of the fond memories I have from the first few years of married life is when Leigh Ann and I would watch that TBS show “Dinner and a Movie.” It wasn’t something we planned, it was more spontaneous and it depended on the movie that was featured. That was a lot of fun. However, I can also remember bringing our oldest child Bailey home from the hospital; all of a sudden I felt like the world was such a dangerous place. It seemed like such a long drive from the hospital to our home. I remember being exhausted and wanting to sleep but needing to coordinate that with my wife; it all depended on the baby. We were still able to watch “Dinner and a Movie” for a while but by the time Taylor came along, Bailey was older and our lives continued to change. Although we enjoyed that time watching movies together it seemed to grow more and more difficult to do. The kids developed television preferences, the house work increased, and we were a lot more tired than in the past. New parents quickly learn about the fatigue factor and veteran parents are always looking for new ways to cope with it. New or experienced, tired people are not usually the most gracious with one another.

3. Disability magnifies all of the differences and struggles that may have once seemed trivial.

ndss-webinar-5-22-2013

If you can, think back to when you were dating the person you married. Not the times when you were trying to sneak some kisses but when you talked about the future. What did you talk about? Did you talk about having a child with a disability? I know you didn’t. No one does because it is something that only happens to “other people.” Well not that you have become those “other people” you both have to adapt to a new reality, one that neither person chose. It is tough. On top of that the rest of life keeps chugging along. This new, unexpected reality is a big challenge, one that increases the stress-level in a marriage to a point that causes all of those little differences you once worked through to begin to surface again. When this happens you need to step back and try to put things in perspective but that is really tough.

4. Grief and mourning are common when a child is born with a disability but they are not necessary.

This was a challenge for Leigh Ann and me. We came out on completely different sides in terms of grief. As I have said before, I saw the perfect little Treyton. I never thought my child would have Down syndrome but I also never thought about having a certain type of child. My wife on the other hand had always dreamed of having a boy and along with that she had a picture of what that was going to be like. I also know that reading that last sentence is going to be hard for her. She loves Treyton and is a great mother to him, in fact, he would not be doing as well as he is if it weren’t for her. However, she did grieve the loss of the child she dreamed of.

For a long time I really did not understand her. To me it felt like a type of betrayal to our son. Treyton was born with a disability and life was going to be more of a challenge for him than our other kids. He needed his parents to be there with him and it felt like Leigh Ann wasn’t stepping up. I was wrong of course. As I began to read about other families I began see that most people had some type of grief reaction. In fact, it seemed so common that I began to feel like the odd-ball. That is why this observation from the webinar was so important to me. Grief is normal but if you did not experience that grief you’re alright as well.

5. It may be time to rethink the “division of labor.”

The traditional division of household labor is that moms usually stay home as the primary caregivers for the children and men go out and earn the money to pay the bills and put food on the table. Even if you have a dual-income home it is usually the mother that takes the lead in caring for the children and in this case the disability as well. If you are a trailblazer of sorts and have created your own “normal” in terms of homemaker/breadwinner rock-on, the terms he/she, his/hers, etc. can be swapped.

Regardless of the roles you have set in your family, the addition of a disability is reason to reevaluate them. Both roles have additional things to think about and you both need to be involved when it comes to the unique requirements that a disability brings into a family. If you are the type of spouse that likes to be “hands-off,” stop. There isn’t any room for hands-off anymore (there never was but it is that much more crucial now). Or maybe you are a control freak. Be warned, you are going to burn out fast.

Both partners need to be fully vested in raising all of the children. Sure, there are going to be things that may come more natural to one partner but they aren’t excuses for ignorance on the part of the other spouse. Also, you may have a certain way of doing something that over time you have learned works the best. Be careful how you communicate that, sometimes the trial and error journey is necessary. Leave room for your spouse to have his/her own successes and failures.

6. Be aware of discrimination against fathers.

I can remember sitting in my living room during one of the first home-visits with our county’s Early-On program and trying to be a part of the whole process. It was all so new and there were a lot of terms being used that I was clueless about. However, I did know my son so I tried to share my observations only to be somewhat ignored. I wasn’t completely ignored, that would have been obvious but it was clear that my input wasn’t necessary. What the therapists didn’t know about me is that I don’t back off when we are dealing with something as important as my child’s development. I received similar responses at some of our first IEP meetings and doctor visits. In fact, there were times when the therapists actually seemed surprised that I even attended some of the meetings. To me that is a big negative toward dads as a group but it also shows how society still holds those traditional family roles.

7. Either partner has the ability to change the dance.

The “dance” idea is one the webinar presenters used and I think it provides a good image. When you dance one person leads and the other person follows in response. Think about how that fits in marriage. When I come home from work and talk harshly to Leigh Ann she is most likely going to follow my lead. Or, if I walk in the door and I am feeling rotten inside from a bad day of work but Leigh Ann greets me with a smile and is pleasant then I am more likely to respond in a similar fashion. If you want your marriage to improve take the first step. Be a good spouse, partner, and friend. Take the lead.

Final thoughts

There are days when I am the best damn husband my wife could ask for and then there are the rest of the days, the majority of days. I am a work in progress and so is my wife. Some days seem to go more smoothly than others but at the end of each day I know she is committed to our marriage. Even when the challenge is as big as having a child with a disability I know we are going to figure it out together. We both understand that love isn’t some magical feeling that people fall in and out of. Sure you do get to experience that from time to time but in reality love is a choice and an action.

Rob Arnold has been married to his high school sweetheart for almost 19 years. Together they have three daughters and one son. He earned his bachelor's degree in General Business from Grand Valley State University as well as an MBA in Strategic Management from Davenport University. He enjoys reading, hunting, scuba diving, and spending time with his family.
  1. Little Bird's Dad

    Rob,

    I read this post a few times over…as a new Dad starting down this path, I really wanted to see what you found helpful to sustaining a strong marriage while raising a child with Down Syndrome.

    You really struck a chord with me on #6 – the entire pregnancy/birth/baby world is designed for Momma. Despite being heavily involved in the pregnancy, birth and Little Bird’s first 6.5 months, I am still the cute little man tagging along with Mommy to all her appointments, or the Doddering-Dad picking up diapers or baby bottles.

    The thing is, I see SO many Dads like you and me that are heavily involved that I wonder why it is this way.

    My blog is still very new, and trying to find its “Voice”, but this phenomena is something I want to focus on more. As Yogi Berra might say: “Maternity isn’t just for Moms”. ;-)

    Anyway, thanks for a great post! I’ve saved it in my Evernote “Favorites” folder…good words from a wise man!

    Thanks,
    Little Bird’s Dad

    • Rob Arnold

      LBD,

      What I really found validating was the fact that the presenters of the webinar (both women) observed the same thing even for stay-at-home dads.

      Unfortunately dads need to accept some responsibility for this. There does seem to be a percentage of men that feel it’s not “macho” to be involved in the care of their kids. To me that is just B.S. I was taught that real men are able to get things done. I was taught that by my father who was a Marine. He also taught me to sew on buttons and iron my clothes.

      What I have tried to do to gain some credibility during meetings with therapists, teachers, and doctors is to make sure I have done my own research ahead of time. I am not trying to out-smart the experts but I want to show them that I am not ignorant and that I do have a working knowledge of the things we are talking about.

      Thanks for your comment and I look forward to what you have to say on this type of thing in the future.

      Sincerely,
      Treyton’s Dad – Rob

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