What I've Learned in My First 13 Years As a Parent

My oldest son Alex recently celebrated his 13th birthday. Thirteen! Now officially a teenager, we've opened a new chapter in that non-existent parenting guide that we all think we should have.  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. I felt sorry for him and for us, 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 that 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 that 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 that Alex was just months old, and for now and probably forever, I've been jumping through hoops to get what Alex needs. I've learned that 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 that I was an ignorant user of the "r-word", and I wish that 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 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, though, and we're just 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 lucky 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 that my household is a hot mess, I feel bad that 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, that 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 deserve. 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!

Happy birthday, dear Alex!

Big Announcement

I enjoy writing. I've been told that I'm fairly good at it; at least, my Facebook posts keep people entertained. So much so, in fact, that I've been encouraged many times to write a book.

The thought of that scares the snot out of me.

Why? Not because of the work it takes to write a book, or the very possible chance of rejection by publishers, or the fact that I already can barely keep up with all the projects on my desk. The real reason it scares me is this: people on the internet are mean. Awful, even. I often find myself breaking a major rule of Facebook scrolling (Thou Shalt Not Read the Comments), and some of them really upset me. If I write something that is featured online somewhere, would I be able to handle it if people said terrible things about my writing, or my family? Doubtful. But, that hasn't stopped me from submitting essays I've written to online journals, and so far I've survived the treacherous comment sections after my pieces were published. Because I would probably forever regret it if I didn't try, I've decided that it's time to put pen to paper (er, fingers to keyboard?) and write the message that's been on my heart for a few years.

I've already started outlining my ideas so I can begin to craft the first draft of my book. My book. I'm excited, but may throw up. I'll keep you posted via Facebook. Seriously, though, I have no idea where this will go, but I'm doing it.

Thanks to all who have encouraged me, and hopefully I won't disappoint anyone (read: disappoint myself). For now, keep your fingers crossed, say a little prayer for me, and stay tuned...

Advocacy Doesn't Get a Holiday

When one of your children has disabilities, holidays may not always resemble the traditional celebrations that others enjoy. Independence Day, with all its patriotic fanfare, can be an absolute nightmare for a child with sensory sensitivities (and also for their families). 

For several years, my family has not attended community fireworks displays because the crowds and sounds have just been too much for my son. We have also spent time apart on the holiday so that I could take the younger kids to the parade. This year, we decided to try to spend the holiday together. We decided to watch a local fireworks display at an off-site location, one that was just far away enough to see everything but with a fraction of the noise. We also took a big leap of faith and attended a parade as a family. This was an even bigger deal, because my son tends to associate parades with sirens (as the police cars and fire trucks participate in the parade, and those sirens are just too much for him), but we figured we should give it a try this year. Although he struggled at the beginning of both of these events, he was eventually able to relax and enjoy them, and now even uses words like "awesome" and "best ever" to describe them. That is a major milestone for us!

While we found a way to celebrate the holiday this year, we are still dealing with sensory issues in our own home. Neighbors who choose to terrorize the most vulnerable residents of our community with their illegal fireworks, in order to satisfy their pyromaniac tendencies, make a challenging holiday exponentially worse for families like mine. Last week, after many rounds of pro-firework vs anti-firework posts on our neighborhood Facebook page, it was suggested that we confront neighbors who choose to ignore the laws regarding fireworks, rather than posting passive aggressive complaints online. Last night, I found myself in that situation. I was angry because my kid (and dog!) were terrified, and I decided to address it directly rather than post in the Facebook group and inevitably cause another battle. When I approached a group of neighbors to inquire how much longer their obnoxious antics (which took place one block from my house, sounded way louder than the community display we watched, and caused mass hysteria) would last, I was verbally attacked. They belligerently told me to "relax, it's the 4th of July," and "it's my right as a Vet to celebrate my freedom." When I explained that my son also has rights, the gentleman who described himself as a Vet called me an a**hole. There was absolutely no compassion, no apology, and no respect.  

I was shocked and upset. I wasn't trying to kill their fun; I was requesting that they observe the laws regarding fireworks. They could have celebrated at one of many fireworks displays around town. Their good time should not have superseded common courtesies. My responsibility is to my kids; if I can advocate for my son and raise awareness of a situation (as I know that others in our neighborhood are also struggling with the noisy amateur fireworks), then I will absolutely do it. No one deserves to feel unsafe in their own homes, and yes, that includes people with disabilities. 

Now more than ever, we need to be civil to one another. Acting in kindness would be ideal, but if that is too difficult, I implore you to at least be respectful. When you are stubbornly insisting that you have a right to engage in illegal behavior that is scaring children with disabilities, there is a major problem. If pointing that out to you makes me an "a**hole," then fine, yeah: I'm an a**hole. It's probably not the first time I've been called a name because I've stood up for my kid, and it probably won't be the last time, either.

Waiting for the July 4th parade to begin