Dealing as a Couple With Your Child's Diagnosis of Down Syndrome

The Importance of Supporting Each Other

Dealing as a couple with your child's diagnosis of Down syndrome.

As the parent of two biological children with Down syndrome, I have lived both experiences. My first child was diagnosed with Down syndrome when I was five months pregnant. But I didn’t want to do the amniocentesis, as I knew I wanted to keep my pregnancy and the confirmation of his diagnosis was not going to change my desire to give birth to him. My second child, my daughter, wasn’t diagnosed until the day she was born.

There were no abnormalities detected during her pregnancy, and I didn’t want to have a test done.

Even though I knew of my son’s condition in advance, I couldn’t avoid the typical mix of emotions that many parents face when their child is born with Down syndrome. My husband and I had totally different reactions, and not understanding each other didn’t help at all.

Couples may often have very different reactions from one another. One parent may seem strong and indifferent, and the other one desperate or upset. That was my personal experience, and it took us months to understand each other, and to take the time to accept that we were both expressing and dealing with our feelings as best we could.

When my daughter was born, it was a shock for me. It was totally unexpected and hard to digest. But this time I counted on her father, who unconditionally supported me with no judgment.

It’s very important for couples to understand some basic rules for reacting to their child’s diagnosis:

- Couples need to talk, to face their feelings and accept that is not an ideal or planned situation, but they can overcome their fears and concerns by working and learning together.

- Initial reactions to the diagnosis should determine the future, or the love for the child. They shouldn’t become constant recriminations, or become a tool to blame each other. It’s normal to react in ways we never expected, or we may never be able to understand. Acceptance is very important, from both sides

- Both parents are equally important, and it’s not fair for any of them to be left with no support, or to be excluded. Many times one parent wants to take full responsibility of the child, and doesn´t accept help. Other times one of the parents steps back thinking he´s not ready or doesn´t know how to deal with the diagnosis. Both extremes are negative. It’s important to find a balance, and always remember that the child needs both parents’ support.

- Don´t be ashamed to ask for help, or get help from friends and relatives. In trying to demonstrate that they are strong enough, or how much they love their child, many couples isolate themselves and refuse help from others. Having a newborn is not an easy task, and may be harder when your child has special needs. The diagnosis can be emotionally exhausting, and it’s important to feel supported and loved. By closing your doors to help you may burn yourselves out as parents, and create discomfort as a couple.

- Discuss every step to be taken. Be sure to deal with every situation as a family. A situation that affects couples’ stability is interference from relatives from one or the other side. You may need help and support, but take your own time as a couple to make decisions for your child. Don’t let others tell you when it is time to share the news, or how to it, or to do it for you. This is your special time, your own child, and no one should get involved in the intimacy of this process.

- Choose the best services for your child as a team. Be objective, and learn how to share your point of views without being judgmental. This is a learning experience for both of you, not only as the parent of a child with Down syndrome but as any other parent, and it´s important to work together for the sake of your child and your family.

Throughout the years, I’ve learned that even when I’m the one who devours books on development and is always looking one step ahead at every stage of my kids’ development, their father has important contributions to make, too. His method is to deal with challenges simply and straightforward, and keep moving on without analyzing every step. Our kids are the reflection of both of us, and we are both equally important for them.

In the end, the most important lesson we learn as parents is to understand that just as our kids have unique abilities to develop and fulfill, we do as parents and individuals, as well.

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