Down syndrome from a father's perspective.

How does having a child with Down syndrome affect my other kids?

When we found out that Leigh Ann was expecting our second child I remember wondering how in the world I would we could have two kids. I loved Bailey so much, more than I had ever thought possible. How could I love two kids? What would Bailey think? Would she understand that I still loved her just as much? How would I balance my time? I still had the same amount of time but now had to split that with another little one; it felt like I was stealing from Bailey. Then the nurse handed me Taylor and I instantly understood that a parent’s love is far more abundant than I had ever realized. However, having a child with a disability added an entirely new level to this common fear. This parental concern is not as easily extinguished. Having a child with a disability really changes the dynamics, the family needs to find a new equilibrium. How does a parent make sure they are doing the best job of nurturing every child?

Considering the collateral damage.

The night Treyton was born Leigh Ann’s aunt brought our three girls up to the hospital to see their new baby brother. I don’t remember being concerned about telling them that the doctors thought Treyton had Down syndrome. However, a couple of months later I had tears come to my eyes while reading about another parent’s story of telling her kids. At some level I must have been concerned about the impact on my kids but didn’t realize it I guess.

As our family got back into the groove of daily living with a new member everything seemed fine in the world of siblings. Our two oldest girls were at a fairly independent stage in life but Lindyn was not. We have worked hard to keep a good balance of including our kids in the Down syndrome world but also not burying them either. Yet there is always a question in the back of my mind, “Am I being the best parent I can be to ALL of my kids?”

The sh!% of life.

In preparation for the Christmas holiday, our youngest two kids had parties planned in their classes. However, the weather did not cooperate and school was cancelled. Lindyn, being 9, had conflicted feelings about this because she was happy to skip the school aspect but bummed about the party. Treyton on the other hand really didn’t have a clue (it must be nice being 4). Yet Treyton’s teacher did recognize that some of the kids may be disappointed so she sent out an email and offered an open house type party for the following Monday. I thought that was pretty cool.

When Lindyn heard about the open house she immediately started asking to go along, she had been wanting to see Trey’s class for a while now. While I was at work that Monday, Leigh Ann took the two kids to the open house. The teacher had crafts for them to do as well as a small gift. At the table where Leigh Ann and Lindyn sat working on a craft with Treyton also sat one of Trey’s classmates and his mother. As Trey worked the glue stick over the piece of paper both Leigh Ann and Lindyn heard the little boy say this, “Mom, that is Treyton. He can’t do anything right.”xbox-lesson

Keep in mind that I was at work during this party and learned about this incident when I called Leigh Ann with a Christmas question. I could not get ahold of her earlier so I asked where she had been and when she told me I cheerfully asked how it went. I had no idea until the tears began. They were tears for Treyton, for herself, and for Lindyn. I asked her what she did in response (I had a lot of suggestions at this point!) and she handled it well. She simply looked at the little boy and told him that Treyton good do a lot of things like write his name but that some things were just harder for him.

I haven’t personally asked Lindyn about this because I don’t think it is something she wants to talk about. She is proud of her little brother and was confused by the insult because in her eyes he is really smart. Lindyn and Trey are really close and I am sure that will only increase as they grow older together. It is something Leigh Ann and I are both thankful about as well as concerned.

A window into the world of siblings.

I am the youngest of three children, all of us are “typical.” As a result I can never truly know what it is like to have a brother or sister with Down syndrome or other special needs. I can tell you what it is like for me as a parent and try to help you on your journey but to know how life with Treyton is impacting my three girls is out of my reach. That is actually a scary thought, it is a real unknown for a parent.

When I read the email from the NDSS stating there would be a webinar about siblings and Down syndrome I made sure to block off the time on my schedule. I didn’t really know what to expect as I didn’t have any details about the webinar. It could be a professional like a psychologist talking or other parents or who knows? I also didn’t know exactly what I hoped to get out of the experience. I guess maybe I was hoping to get some type of confirmation that I was doing the right things for my kids.

Recapping the sibling journey.

The webinar was broken up into two hour-long segments, two-days apart. Each segment was presented by an actual sibling of a person with Down syndrome, someone who has lived the role. The two different presenters offered some common threads but their stories offered different perspectives.

Anne Marie Cerniglia

On Monday 24 year-old Anne Cerniglia provided her story. Anne is the second of three girls; her younger sister Yvonne was diagnosed with Down syndrome. Anne is a nursing student and believes that having a sister with a disability like Down syndrome has helped to make her into the person that she is today.

Anne’s earliest memories of her sister involved therapy sessions; she is thankful that her parents allowed her to be involved. Growing up Yvonne and Anne had a fairly typical sibling relationship. One with highs and lows, good times and arguments. They did a lot of things together but also needed their own space. Anne said she understood why her sister needed so much of their parent’s attention but also stressed the need for parents to balance time among all of their children.

Marianne Marts

Marrianne Marts is the youngest of six children. Her oldest brother Joe, of whom she is now guardian, has Down syndrome. Her story was one of deep love for her brother yet there were many challenges. It was a story that involved a lot of concessions to her brother’s desires and there were times that she found it difficult to explain her his behaviors.

To say that having a brother with Down syndrome helped to shape who Marianne became as an adult seems like an understatement. She became a special education teacher as well as an adult disability advocate. Ms. Marts is a certified trainer and chose to become the guardian and primary caregiver of her brother. Compared to the first part of the webinar, Marianne had a significant focus on being an adult sibling.

Each month the National Down Syndrome Society offers a free webinar to anyone that is interested in learning more about Down syndrome. The topics are as varied as the many aspects of the disability. Follow this link to check them out and while you are there sign up to receive the NDSS newsletter so you receive advanced notice of new webinars as they are scheduled.

A few suggestions.

I enjoyed hearing the stories that these women shared but I was really looking for something tangible I could take away from the webinar that would help me be a better father. I listed some of those “tangibles” below. Like everything else, there is a lot that depends on the specific situation.

  • Do you best to balance time and attention among all of your children.
  • Recognize that siblings take on more responsibility and share many of the parental concerns.
  • Acknowledge that siblings have a challenging role.
  • Provide space and privacy for the siblings.
  • Ask and don’t expect siblings to be involved.
  • Discuss future with the siblings as they will most likely be the caregivers. Siblings know this whether you talk about it or not.
  • Offer opportunities to participate in therapy and meetings.
  • When there are multiple siblings the responsibilities may not be spread evenly. Help them work through those issues.

This list is far from complete and even if it were, there are no guarantees. As parents we have been given children that, regardless of an official diagnosis, all have special needs. Our job is to adapt to each child’s needs as best we can. We will make mistakes. When we do it is important that we admit we made a mistake. Once we do that we can learn from them and move on. Our kids love us and their siblings. They don’t have any illusions that we are perfect and are pretty resilient. As long as we are willing to admit our shortcomings and learn from them I think things will work out alright in the end.