When Mama Bear Comes Out

In the beginning, when I was a new parent of a child who looked different and one who was still processing it all, taking Aiden out and about was nerve-wracking. I was obsessed with how long people let their looks linger. I always assumed they were passing judgement and found myself constantly on the defense. Even though I loved my child fiercely - despite his differences - I was always shocked (and quite honestly a little skeptical) when a perfect stranger would comment on how cute he was. Were they being genuine? Or trying to cover up the fact that I caught them staring?

Over the past 5 years, I've seen and heard it all. What has surprised me the most is that adults seem to be the worst offenders. Hadn't anyone taught them manners? I'd think to myself when an adult would nudge their friend to have them look at my sweet boy. Kids, however, have an innocent and healthy curiosity that perhaps makes their reactions a bit more forgivable.

I was never quite sure how I would react during these encounters. I'm still not. I desperately want to have the right thing to say - something poignant and composed that can turn a negative situation into something positive for all parties involved. Unfortunately, that is rarely the case when emotions run high. I either find myself fumbling over my words or coming across like a crazy, overprotective mom.

As the parent of a child with Apert syndrome, I experience these encounters daily. But as a parent in general, I too have the responsibility to teach my own kids how to act appropriately - including how to respect others who have physical or behavioral differences. I get that sometimes kids make off-the-cuff remarks without thinking. I've experienced that myself on more than one occasion (once, while shopping at the grocery store, Ethan was overly vocal in his curiosity about a "little person"). It doesn't mean that I've failed as a parent and I don't pass that judgement on to other parents when their kids react to Aiden. However - it is my opinion that how the situation is handled (or NOT handled) at that very moment truly defines just how well you are doing your job.

Our family was invited to enjoy a day of baseball at the Dell Diamond this past weekend and we happily accepted. It was a beautiful day where we were able to enjoy the perks of experiencing a poolside party located on the upper deck of the stands. With all they have to offer there for kids, we actually caught very little of the game, instead alternated between the playscape and standing in line for the trampoline bungee (Aiden's choice) and the rock climbing wall (Ethan's choice).

While patiently waiting in line with Aiden, a boy in front of us, about 10 if I had to guess, began glancing back at Aiden. No biggie. It happens all the time. I would try to catch his eyes and offer a smile, but each time he looked at me he quickly turned around.

When it was our turn, they took 3 kids into the waiting area to sit on benches while the kids before them got unhooked from their harnesses. I went in with Aiden, who was between me and the boy on the bench. Immediately, any time Aiden turned toward the boy, he began to scoot himself farther away with an obnoxious scream. After the second or third time my blood was boiling.

"Is there a problem?" I shouted with an obvious amount of emotion. "I'm sorry," he said. "That boy is just freaking me out." I looked around for his parent. Nowhere to be found. "Well he is a perfectly sweet little boy and if you have a problem, perhaps you should go sit over there." I pointed to the empty bench on the other side of us. So off he went.

When I looked around yet again I noticed that a handful of adults had witnessed this exchange and suddenly, I felt like my actions were being judged. Even though I was protecting my child, I couldn't help questioning myself and whether I had handled it appropriately.

As Aiden bounced himself into the sky, laughing with pure joy the whole time, I heard a little girl behind me say "Look at that strange looking kid". Again, no parents nearby when I turned to her and said "He is not strange and that was very rude." She hadn't realized I was his mom standing there and was mortified when I addressed her. "I'm sorry for saying that," she said sheepishly and walked on.

A little while later, the boys were playing on the crowded playscape. It started to get really warm and Aiden came to me a few times complaining about this or that (nothing new). "I'm hot." or "Ethan's not playing with me." And so on. At one point he said "a boy stepped on my toes" and I chalked it up to it being an accident with so many kids running around. When he came to me a second time saying the same thing, I made a point to keep a closer eye on him as he ran off. Sure enough, as Aiden crossed the bridge from one side of the play structure to the other, a boy twice his size walked up to him and kicked him in the shin. I COULD NOT BELIEVE what I had just seen.

I scooped up Hudson who had been crawling around at my feet and without so much as a second to compose myself marched up to the boy, who was already walking away. "Hey you!" I shouted. He turned slowly, knowing full well I had just seen what he'd done. "DO NOT kick my little boy, do you hear me?" Dead stare. "DO YOU UNDERSTAND?" The boy hid behind a railing and shook his head yes before running off. Probably to go tell his mommy about the mean lady who yelled at him no doubt.

I went back to where I was sitting and mumbled to the woman next to me "Whew - sometimes mama bear just comes out." Again, I felt a sudden pang of guilt to have shouted at the boy and wondered if the moms would think I was too aggressive. She and another mother next to her said they'd both seen what the boy did and were horrified. Then they said what I thought during all 3 of those situations "Where are the parents?"

And that's just the thing. I wish the parents would have been there to handle their own child's behavior so I didn't have to step in but also so that they could learn, if they weren't already aware, how their child reacts to someone who is different than they are. Perhaps they could have used it as an opportunity to educate their child so they would not behave that way in the future. Or I could have talked to the parent about Aiden and shared a little of our story.

So while I would personally never let my child run around the crowded kids area without supervision, I was more disappointed that three opportunities to address their children's careless actions in public were lost...at the expense of my child's feelings.

In a perfect world, this stuff would never be an issue. Kids would always be nice to others regardless of what they looked like or their different abilities. In reality, I know that just isn't the case. So here are a few tips that you might use when you find yourself - or your child - in the middle of a situation like we experienced:


1. If your kid says something insensitive, acknowledge it. Not only if it was overheard, but especially if it was. I don't care how embarrassed you are or how much you want to pretend it didn't happen - ignoring it tells your kid two things: it's okay to do/say what they did and that they can get away with it, even in front of a parent. And please, even do this if you plan to address it differently in private.

2. Apologize on your child's behalf. Say something, anything, to let me know that you understand that your child's actions were hurtful. If you don't get it? Then I know your kid is never gonna get it. And that's just a shame.

3. Ask your child to apologize as well. Putting them on the spot holds them accountable for their behavior. It might even embarrass them enough to discourage them from doing it again.

4. Focus on the positive. Say something about my child that discredits the hurtful comment your kid just said. Did they say something about Aiden's face? Point out his sweet smile. Did they blurt out how different his hands are? Comment on how well he's able to use them to pick up that small piece of paper on the ground. Disarming the negative with a positive just might drive home the point that even with his differences, my child is pretty amazing.

5. Talk to your kids about respecting people of all shapes, sizes, colors and abilities. Have a conversation with them early and often. I began talking to Ethan about this subject when he was about 2 and could understand. Granted he had a brother as an example, but at that age Aiden was no more different to him than anyone else.

Bottom line is, we all want our kids to be accepted, but while that may not always happen naturally, respect should. I may not always be around to handle these situations on behalf of my child, just as the offending kid's parents were not there to witness it. But if we do our best to guide our children, provide a good example for them, and address behavior appropriately when something is said/done, then maybe kids like Aiden will encounter one less person who doesn't know any better.

From one mom to another - THANK YOU and please share!

On having Apert syndrome: An interview with my 5-year-old

My son Aiden was born with Apert syndrome - a craniofacial condition that is characterized by physical differences in the way the head, hands and feet were formed during gestation. The bones that make up his skull fused prematurely meaning they do not expand on their own as he grows. In addition, his fingers and toes were fused together and he is missing one of the knuckles in each digit. This isn't something you see every day. In fact, Apert syndrome occurs only once in every 160,000 births. This means on average, of 4 million births in the US annually, only 25 are born with this rare condition.

We didn't know ahead of time (you can read more about Aiden's birth story here -- or watch us tell the story in this short film here). The doctors who delivered Aiden were just as shocked as we were. We found out afterwards that of all the neonatal doctors on staff in the NICU, only 2 had ever cared for a baby with Apert syndrome in their entire careers. To say he was born different is not an exaggeration. It is a reality. His reality.

From the very start, Ricky and I bottled up our fears and put them on a shelf so we could focus on Aiden's immediate medical needs. The first 2 years were chock full of appointments, hospital stays, research and surgeries. We barely breathed. Inevitably, the emotions eventually bubbled over and came pouring out once the dust settled. We had been so consumed with the medical side of his care that we never allowed the rest of it to sink in.

You see, I could schedule appointments or dose his medicines according to instructions. I could stay up all hours of the night to listen to his breathing or change post-surgical dressing changes. Sure, that was hard on this momma's heart, but it's not my heart I'm worried about. It's his.

As Aiden's mom, I worry if we are going to be able to raise this little boy to be happy. I am scared that others will not accept him despite his differences. More importantly, I am terrified that one day he will not accept himself.

For 5 years Ricky and I have made the conscious decision to treat Aiden no differently than we do his older brother Ethan. We don't baby Aiden. We don't do things for him without first pushing him to find ways to do things himself. He has to pick up his toys, eat his vegetables and do chores just the same as any other kid. His condition may present challenges. But it will never be an excuse.

As the boys have gotten older, Aiden's physical differences have become a topic of conversation in many social situations. There is pointing, staring and many times comments and questions from other kids while we are at the library or the park or a restaurant. So while we have worked so hard to ensure that Aiden feels no different than anyone else, the reality is, he is going to have to deal with a much more critical audience in the real world. For this reason, we have started discussing his differences with him at home.

I used to cringe at the words 'Apert syndrome'. I hated the sound of it coming out of my mouth. But...eventually we decided that in order for Aiden to develop self-confidence, we needed to stop being afraid of those words. If we want Aiden to accept himself fully, then Apert syndrome can no longer be something we associate with being bad. It's simply a phrase that describes his medical diagnosis. It does not define who Aiden is at heart.

When appropriate, we talk to the boys about Aiden's differences and always answer any questions they may have. A few times Aiden has asked why his hands are "big" or why he has to have surgery and after the initial dagger to the heart, we have found that answering matter-of-factly seems to be the best way to go. We tell him that God made him beautifully and perfectly and every single person is different in their own way. We explain that he needs surgery to give his brain room to grow so he can continue to learn all there is to learn in this world. So far, these answers have satisfied their innocent questions.


In an effort to gauge how much Aiden truly understands about having Apert syndrome, I decided to turn the tables and ask him some questions. I was curious to see how he feels about it and to figure out if the increasing number of sometimes awkward social encounters are impacting his self-confidence. The conversation went as follows:

Aiden, what is the best thing about having Apert syndrome? I'm handsome.

What is the worst thing about having Apert syndrome? The sleep studies.

How does it feel when people say mean things? People say "your face looks funny" and it makes me feel sad.

What do you say to them? I say "that's not nice, God made me this way."

What is your favorite thing about yourself? I'm smart.

What's something you're good at? Running.

What is something you need help with? Buttons.

How do you feel about your hands? I like them. But a friend at school said "your hands are fat" and I felt sad.

What is something you wish you didn't have to do? Go to the doctor.

What is something you like about surgery? Dr. Fearon has toys in his office.

What is something you don't like about surgery? Missing school.

Why do you have Apert syndrome? Because that is how God made me.

How do you feel about having Apert syndrome? Good. God made me this way and my mommy and daddy love me.

As you can see, I've got nothing to worry about at this point. I've got one smart, self-aware and confident little guy on my hands : ) If only he would stay as positive and carefree as he is at 5.

Aiden starts kindergarten this fall which means an entirely new world of being away from me every day, playground bullies and learning how to stand up for himself. I'd be lying if I said I am not already feeling anxious about this. I asked him if he wanted me to come in and read the "All About Aiden" book to his new friends at school in the fall and I got an emphatic "yes" which I feel will be a great way to help kids understand both how Aiden is different, but also how really he is just an ordinary kid.

Of course we all know...Aiden is FAR from ordinary : )

{If your child has special needs or a physical difference, I would love to hear how you address it with them. Do you discuss it only when they ask or do you bring it up in an effort to make them aware?}

Update: Hudson's hemangioma

Over the past few months, Hudson's bump shrunk down to a faint pink spot during the time he was on the medicine. We successfully weaned him from 2 doses of Propranolol to 1 dose and eventually altogether stopped in the middle of March. His specialist had told us that it is kind of hard to know exactly when the "growth" phase is complete, thus, there was a chance that we could see the bump begin to increase after discontinuing the med.


We watched it for the next 2 weeks. Each day it appeared slightly redder, darker, and finally started to raise above the skin a bit. So I called the doctor to see what she recommended and wasn't surprised when she said to start giving him the Propranolol again. He will continue the medicine for another 4 weeks, then we will  wean him a second time to see if at that point the growth phase is complete. The hemangioma should go away on it's own at some point, the medicine is simply helping to keep it from growing bigger until it does. Luckily he tolerates the medicine well and we've not experienced any significant side effects.

There is no exact time table for the cycle of growth but I was under the impression that typically they should stop growing between 6 and 8 months of age. Hudson is 8.5 months. In the meantime, I suppose this will just be a game of trial and error - medicine, wean medicine, wait and see. I'm happy we have the option to give him something that will keep it from growing, however I am also anxious for the process to just be done already. I'm so over people's ignorant (albeit totally harmless) comments...

I've stopped correcting people. Instead I've found it's just easier to smile and ignore.

Despite it all, Hudson is happy as can be. It doesn't phase him one bit! And of course, not even that bruise-like bump stops people from noticing his big bright baby blues!

See Mommy Run: The beginning