Down Syndrome Awareness

My friend Jennifer is raising Down Syndrome awareness on her blog all month by participating in 31 for 21.  She's posting about her son Zach, Down Syndrome and how it has affected her family's life.  I wanted to write something for Down Syndrome Awareness Month, but, to be honest, am woefully uneducated.  She and I decided an interview was in order.  I have to say, I've loved getting to know her better over the last couple of weeks while we worked on this.  Her sense of humor, grace and honesty is so apprecited by someone who, more often than not, puts her foot in her mouth. 

Being a mother is a challenge in and of itself. What would you say is the biggest challenge you face raising a child with Down Syndrome?

I would have to say that the biggest challenge has been having to be a fighter when at times all I want to do is curl up and let things happen. I can’t just let things happen, I have to make them happen.

Motherhood is such a scary unknown. There are so many things that can’t be taught. Now throw into that mix therapy sessions, extra doctor appointments and a tremendous amount of guilt. I always felt like I wasn’t working with him enough. Not doing the exercises the therapists told me to do with him during the week. I try to not beat myself up and blame myself for things but it’s hard not to.

You mention in your blog post about not finding out about Zach prenatally, that you've changed. In which ways? Has your relationship with Chris changed?

It is hard to pinpoint exactly how I have changed, I just have. Have Chris and I changed? I think so. Just bringing a baby into the world will change the dynamic of a couple. For us I think it took our love to a whole new realm. I can’t speak for him but seeing the way he accepted our son with a “he is ours and he will never feel like he is less than” has made me fall in love with him all over.

I don't know a lot about Down Syndrome. Could you explain some of the health problems associated with it?

I would say the biggest, and most common health problem, is heart problems. Zach was born with a small hole in his heart that thankfully did not require surgery. Many kiddos with DS do have open heart surgery within the first year of life. Zach also had bad acid reflux when he was younger. He spit up for what seemed like forever. He did take daily medication for it and we were able to control it with diet. Luckily he outgrew that around the time he turned 3. The only other common problem Zach has dealt with is very small ear canals which have led to many ear infections and a couple sets of ear tubes. When he was 2 we also had his adenoids (apparently they were HUGE) out which helped with colds as well.

There are other health problems that are associated with DS and there is a great site that talks about them all here.

How do you help people understand?

I don’t really think I do. If people don’t want to hang out with him… their loss. If they care enough to ask me questions and want to be our friends then great. Then they get it. Then they understand.

Do you feel like an advocate?

I have to be. I want my kid to have the every opportunity to live up to his fullest potential, whatever that may be. When it comes to his education I am his advocate. I blog because I want to raise awareness for not just Zach and not just Down syndrome but because I want people to be more accepting of people of all abilities and hopefully see that Zach is more alike than he is different.

I've read that mothers of children with special needs are a lot more relaxed when it comes to milestones. Do you find this to be true? Do you find it to be a positive thing?

Yes, I do find it to be true. Kids with Down syndrome will do everything that “typical” children will do they just do it in their own time. I do know that I am so much prouder and appreciate the little things so much more because Zach has to work harder at hitting those milestones. Things that come naturally to most kids don’t necessarily come easy to Zach. He has to work at it and be taught. I didn’t realize that nearly as much until I had Hannah and saw how naturally things came to her. Do I find it to be a positive thing? I don’t really know because I have never known any other way. Personally, if I had to think about it, I would say it is a positive thing. There are so many bigger things in life than to worry about if your kid is sitting unsupported by X age. Or if they have X words by X number of months. I mean years from now do you really think the age at which they first rolled over is going to matter? Help them get into college? Unlikely.

If you had to say one thing to people about Down Syndrome, what would it be?

Don’t feel sorry for me. Don’t feel sorry for my family. I feel so blessed to have been given the opportunity to raise such an amazing loving kid.

When people meet Zach, is there anything you wish you could tell them?

You might not understand what he is saying all the time but try and hear him and you just might learn something. Know that he will never judge you. He wants nothing more than to be your friend and have fun.

Oh...and…try not to let your guard down or he might try and hop on your back and get a piggy back ride.