13 Things I've Learned in 13 Years Parenting My Son With Down Syndrome


My son, Alex, has Down syndrome. He recently celebrated his 13th birthday. Now officially a teenager, we’ve opened a new chapter in that non-existent parenting guide we wish we had. To commemorate our entrance into the teen years, here are 13 things I’ve learned in my first 13 years of parenting:

1. There are few guarantees in life.

After Alex was born and I was released from the hospital to visit him in the NICU at a different hospital, I was given time alone at his bedside to bond. I almost immediately became overwhelmed with sadness, envisioning what I thought his future would be: no prom, no driving, no college graduation — all because of his Down syndrome diagnosis and the misinformation I had received. Then, it sharply occurred to me there are no guarantees in life. None. It is what we make of it. And with that, I became an advocate. We’ve learned the importance of flexibility and celebrating every little milestone. It’s my goal to help him achieve whatever it is he wants to do. He’ll get there, eventually, with the proper support and encouragement. That is something I will guarantee.

2. I am an excellent hoop-jumper.

From the time Alex was just a few months old, and probably forever, I’ve been jumping through hoops to get what Alex needs. I’ve learned an initial “no” does not always remain a “no.” To get it to a “yes” though, sometimes requires jumping through endless hoops. Fortunately for Alex, his mother is pretty stubborn, and someday I do expect to earn a gold medal in hoop-jumping from the “Disability Parenting Hall of Fame.” If not that, then perhaps a bronze in Sarcastic Blogging?

3. I will make mistakes, I will stumble, I will lose, but I will never give up.

I’m constantly learning how to be a better parent for all three of my kids. Parenting Alex, so far anyway, has proven to be the most challenging. Fortunately, we have a lot of support and resources to help us along the way. That said, I am far from perfect, and I will screw up along the way. It has happened, and will happen again. The most important lesson I can take from that is to not give up.

4. The opportunities to educate others are endless.

Not many people know a lot about Down syndrome or the disability community in general. I didn’t before Alex was born. I will ashamedly admit I was an ignorant user of the “r-word,” and I wish someone had called me out. I should have known better, but I didn’t, and I contributed to the problem. There are so many opportunities to teach our peers about Down syndrome and inclusion, and while finding the best technique to do so is tricky, it’s worth it in the end.

5. Finding your tribe is important.

Parenting takes up a lot of time, and often, we find ourselves distanced from our friends just because there aren’t enough hours in the day. This is especially difficult for parents in the disability community, as we can endure extra challenges on a daily basis. Having someone — or even a group of people — who truly understand why it takes four days to return a text, are supportive when you have to cancel plans at the last minute and who don’t judge you when you look like a zombie more often than not, are so important to have in your corner. If you have a tribe, be thankful. If you can bring someone into your tribe, do it. We need each other.

6. Introverts make pretty good advocates.

I am an introvert — I do not like confrontations, speaking in front of people or being the center of attention. I’ve learned though, that when I do have to do any of these things, I can handle it. I never thought I would have to speak up the way I have, and I know I have a lot to learn, but I’m proud of the advocate I’m becoming.

 

7. Not everyone advocates the same way, and that’s OK.

Just like we all have different parenting styles, parents in the disability community have different advocacy styles. I often feel like I’m falling short as an advocate, and catch myself comparing my actions and philosophies against others. We are the experts on our own kids, and we’re trying to do the best we can. I am trying to remember that as I continue to learn the best ways to advocate for my son.

8. Siblings are awesome.

Alex is fortunate to have two younger siblings, both of whom are becoming terrific advocates for their brother. I am always impressed to hear them stand up for their brother when he’s not being included and they are confident enough to do this without prompting. While it’s not always easy being the sibling of someone with disabilities, they do know the importance of advocacy and inclusion. They are both amazing kids and I am very proud of them.

9. Nothing is as picture-perfect as it seems.

With social media being such a driving force in our daily lives, it’s difficult to avoid feeling the pressure of presenting the “perfect family.” While I’ll be the first to tell you my household is a hot mess, I feel bad my photos and posts on social media give an illusion that everything is sunshine and unicorns. That is just not true. Each day brings many challenges, and I’m just trying to get through it all with a little humor and grace.

10. Kids are gross.

This has nothing to do with disability parenting — it’s just a fact. If I never find a booger smeared on a window again, I would be a happy lady.

11. Rest is important and that is annoying.

Caregiver fatigue is a real thing. Parents of kids with disabilities are often running on high levels of stress and exhaustion. I can’t tell you how many times, in the last 13 years, I’ve been encouraged to “relax” or “just breathe.” Sorry, but it doesn’t work like that. Even if I had the time, I don’t have the staff to cover all of the daily responsibilities which would allow me the relaxation I need. Although he is 13 years old and is growing to be more independent each day, I still can’t leave Alex unattended as I would a typical 13-year-old. It is what it is. That said, I can always tell when I’m ready to hit a wall. Aside from the obvious crankiness and exhaustion, I will earn myself a nice migraine when I’m not careful to take a break. This is also something I need to work on: more breaks and not feeling guilty for taking them.

12. The laundry will never be done, so don’t even try.

I’m constantly trying to conquer Mount Washmore, and it just never gets any smaller. At this point, as long as everyone has clean underwear for the next day, I consider it a success.

13. Being a mom is by far the best thing I have done in my life.

As frustrating and exhausting as it may be, there is always a joyous moment in my day. I wouldn’t trade being my kids’ mom for anything, not even for someone who could contain Mount Washmore. And that says a lot.

As my kids continue to learn and grow, I will do the same as a parent. They are teaching me far more than I could ever teach them. Here’s to the next 13 years!

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