Down syndrome from a father's perspective.

Advice about Down syndrome for fathers in honor of Father’s Day

Forget anything you thought you knew about people with Down syndrome.

With Father’s Day just around the corner I wanted to focus on any dads out there that recently found out their child (born or unborn) has Down syndrome. I don’t know anything about you but I have talked to enough people to get a pretty good idea of what went through your mind when you learned that your child was diagnosed with an extra copy of the 21st chromosome. I am here to say you were wrong.

sledge-hammerHaving a child with Down syndrome is not what you think it is.

If you remember anything from this post please remember this. Having a child diagnosed with Down syndrome is not what you think it will be. If you are like most,you have had very limited experience with people who have Trisomy 21 or other cognitive disability. As a result you are forced to make mental references to either the TV show “Life Goes On” or to the show “Glee.” Maybe you also had an aunt that had a neighbor with Down syndrome or something as equally disconnected from your personal experience. Forget all of that.

Do you want to know why I am telling you to forget the limited knowledge you have? It’s because none of those experiences were about you and your child. You are a unique person and so is your child. Don’t fall into the trap of assuming your child’s future has been predetermined by a diagnosis that has been cast upon your child; nothing could be more false! Your child’s future needs to be determined by him/her alone.

I do believe that our “chromosomally enhanced” children with face additional obstacles because of the diagnosis. However, a large number of these barriers to success are not the result of the disability but come from the stereotype perpetuated by ignorant people. That is why I am calling on all dads to “man-up” and advocate for your child. If we don’t fight for our children’s rights who will? Do you agree with our nation’s forefathers that all people men are created equal and have the right to life, liberty, and the pursuit of happiness? If you agree then DO NOT allow someone else to place limits on your child’s potential.

You have what it takes.

Yes, I get it, you weren’t expecting to be given a child with Down syndrome and you don’t know anything about raising a child with a disability. Get over it, neither did I nor most parents for that matter. You have what it takes. No one else can be a better father to your child than you. Relax. Simply love your baby. Be thankful for the wonderful gift of life God has given you. The truth is that both babies with Down syndrome and without Down syndrome eat, sleep, poop, and cry. Don’t miss out on this stage because you are worried about what you kid will be like in twenty years.

If you remember anything from this post please remember this. Having a child diagnosed with Down syndrome is not what you think it will be.

I have been there myself and have talked to other fathers about their experiences. You are not alone if you are feeling overwhelmed by the idea of having a child with an intellectual disability. I realize that you are as dumb as a box of rocks when it comes to Down syndrome. You’ve got time to learn. You are not going to become an expert overnight and you don’t need to either. It’s tough to keep these doubts from popping into your head but you can keep them from setting up permanent residence in your psyche.

No one is a better fit for you child than you, your child needs you. Forget about the “disability” for a minute, a lot of parents get too focused on that. We are talking about your child. First and foremost that little baby is your child. Yes, your child has a disability but that is just one aspect of who he or she is. I have a total for four kids and each one has things that make them unique. Each child needs something a little different from the other. I guess you could say that all kids, all people, have special needs if you really think about it.

ontop-of-the-swingset

Continuing education opportunity.

We all need to work on our parenting skills. I have three girls (15, 13, 8) that do not have Down syndrome and I still need to work on being a better parent to them. I never expected to have all of the answers for them so why would I for my kid with Down syndrome. Just like in marriage, disability can magnify our shortcomings. Don’t let that keep you down, all you need to do is make the choice to be the best you can be for your child.

Once you have made the choice you simply begin by taking an active role in the rearing of your child. You have a lot to learn, we all do. You will make mistakes, we all do. Just stand by your choice and learn from your mistakes. Look for your own areas of weakness and try to strengthen them. In fact, don’t view them as weaknesses because that is so negative, consider them areas for potential growth. When a doctor or therapist uses an unfamiliar term ask them about it. If you are still unsure about it jump on your computer and do an internet search. Take responsibility for educating yourself. You don’t need to get overwhelmed and there isn’t a time limit. Simply keep heading in the right direction.

Take a lesson from Stuart Smalley.

Being the father to a child with Down syndrome does not require you become a different person. You simply need to become a better you. You have gifts, use them, build on them, share those gifts with your child. You have favorite hobbies and activities. Include your kid as you participate in them. Maybe s/he won’t share the same interests as you but that doesn’t have anything to do with Down syndrome, that happens with every kid.

When the going gets tough and you are really doubting yourself you need to take a lesson from the old Saturday Night Live character Stuart Smalley. You need to gaze at yourself in a mirror and repeat these words, “I’m good enough, I’m smart enough, and doggone it, people like me.”

 

  1. Leigh Ann Arnold

    I think this is a great post. It truly is not what you think, people have such an outdated stereotypical view that is so far off the mark. Just last night I was talking to the mother of a 44 year old daughter with ds and she looked at me and said I am so jealous of you, meaning she could already see huge differences in Treyton because of the opportunities that are Available to him that weren’t available to her daughter, she was in awe by some of the things he already knew. What a great time for Treyton to be alive. The tide is changing and we need to jump on the surfboard rather than let the water over take us!
    Treyton’s mom

    • Rob Arnold

      Thank you Beautiful!

  2. Diane

    Great post! Need to get the hubby to read! He knew nothing about Ds when Camden was born except from what he saw on TV. He is already learning fast that our son is amazing and the opportunities are endless these days. He’s now teaching me that everything is going to be just fine.

    • Rob Arnold

      As you already know we are on a slightly different path than anticipated but it is a good one. We get to show the world that a diagnosis is not a determination of a person’s future. It may be a hard journey at times and we may get a little lonely it is worth it. Every time I look into Treyton’s eyes I am reminded of how worthwhile it is.

      Your husband is right! It will be OK.

      Thanks,
      Treyton’s Dad (Rob)

  3. Erin

    THANK YOU! My daddy is my hero, he and my mom are still proudly married, who have both supported me through everything with my heart defect (DILV, d-TGA, PS and pacemaker at 9 years old) and because of their love and support I have always lived an awesome life!

    • Rob Arnold

      My dad played a huge role in my life as well, I wouldn’t be the person I am if it weren’t for my dad. Thank you for telling me about your dad, make sure you tell him as well. All of us dads know our kids love us but we like to hear those words as well.

      Sincerely,
      Treyton’s Dad (Rob)

  4. Pingback: Little Bird’s First Father’s Day: What I’ve Learned in 7 Months | Little Bird's Dad

  5. Mark Leach

    A very key insight you share: how even if you’ve had a relationship with someone with Down syndrome, even a familial relationship, the relationship of father and child is a wholly unique one, and therefore provides a completely different appreciation for having a child with Down syndrome. Something I missed in my own attempt at a Father’s Day message on my blog.

    • Rob Arnold

      Thank you for taking the time to read and comment. I have seen the name of your blog but have not taken the time to check it out. That is something I am going to do now.

      Sincerely,

      Treyton’s Dad (Rob)