Showing posts with label Aiden's Journey. Show all posts
When It Comes to Friends, Here is What My Son with Physical Differences Needs
When kids are little, and learning to navigate the big world full of all kinds of people, they depend on us to guide them. To show them that things like our skin color, our size, our disabilities, are not things we use to determine if we can play with a person at the park or speak to at the store. We do this by exposing them to all kinds of people and modeling behavior that does not put a barrier between us and those who are different.
As kids get older and begin to develop their own likes, dislikes, and personalities - when they can exercise an ability to choose with whom they connect and want to be around - we hope that we have done our job so that they are naturally drawn to people based on their character and not their physicality. That their friend group is diverse and interesting. But sometimes, at no fault of their own, they simply aren’t ever exposed to individuals who are much different from them. The desire to reach out beyond the small group of friends they have from soccer or their neighborhood crew slows down. And while it may not be intentional, they begin to let go of friends who aren’t into the same things or part of the same crowd...or those who are different.
What does this mean for a child with special needs? Unfortunately it means that friendships for our kids often fizzle out in upper elementary and early middle school. Kids who once cast a much wider net while building friendships, one that may have included the kid with autism or a hearing aid or a birth defect, now feel pressure to “fit in” rather than stand out. So befriending those that do (stand out) does not come easy.
I get it. I remember being there. I also remember my parents always telling me to be kind to everyone no matter what. I sat with the kid on the school bus who was being made fun of for his speech impediment and told those kids to buzz off. I helped the quiet girl who dropped her books in the rain. I didn’t always do the right thing, but those times I didn’t stick with me to this day. There was a girl in middle school who used a walker. I am not sure exactly why but from what I could tell it seemed she had limited use of her lower limbs. One day in chorus she had a small accident. She sat behind me and I vividly remember her motioning for the teacher so she could tell her what happened. She started to cry and soon others began to notice the wet spot on her pants and chair. Kids laughed and shouted and pointed and although I didn’t, I also didn’t help or try to get the others to stop. Sure, I knew to be kind and how NOT to be unkind, but what that girl really needed was a friend.
Now, with children of my own I worry once again about the upcoming middle school years, particularly for Aiden, my 5th grader who has a rare craniofacial condition. If you don’t know about Apert syndrome (and you likely won’t if you don’t know us personally), it includes marked physical differences in his face, hands and feet. He’s had more than a dozen medically necessary surgeries to improve breathing, address vision and hearing issues and more major ones that have changed his appearance in a drastic way.
Friendships don’t always come easy for Aiden. When he was younger, kids were usually scared of his appearance initially and it wasn’t until someone forced the interaction that he would be included. My husband and I have always had friends who encourage their kids to get to know Aiden and treat him like any other kid and we are forever grateful for those relationships. Those have taken the sting out many times over the years.
Once Aiden got older and began attending school, he needed to navigate it on his own. In the early years it only took a visit from mom to the classroom and an opportunity to ask questions for kids to no longer think of Aiden as different. Later on, though, there was a distinct shift in the friendship department. The kids who were kind at school were establishing friendships beyond the classroom and for the most part, they didn’t include Aiden. There were the occasional party invites and play dates initiated by a kind mom wanting to encourage her child to be inclusive. But those often became painfully awkward like one instance where the kid complained “I didn’t want to be here but my mom made me” when Aiden had him over to hang out.
Are kids kind to Aiden? Most of the time, yes! And I’m very appreciative for the time spent by caring parents reminding their kids to be kind to the kids who are “different.” Do I want more than surface friendships for my son? Absolutely.
Kids with differences do not need to be included for the sake of being included. If you think you are doing the “right thing” by inviting my child to a party when your child does not actually want him there, you’re not. Your intentions, while good, can make things worse. He can tell when he’s not wanted somewhere or when his invite was an afterthought. He knows.
What he needs is genuine friendships with kids who truly see beyond his differences. He needs parents who encourage their kids to do just that. He needs just a friend or two - not even a whole group - who want him to hang out after school playing video games or go to the movies on the weekend. He needs kids who accept him as he is - as we all are - fearfully and wonderfully made. He needs kids who enjoy being with him for his silly personality and ability to name (and do) every Fortnite dance.
My child with physical differences does not need pity. He does not need friends who are forced to invite him to social functions by well-meaning parents. I cannot always tell a genuine friendship at first and thus doing so is even more difficult for him. But I promise I would rather him have no friends at all than fake ones. The thought of either breaks my heart in two, but it is a reality I think about more and more. Each night I pray my sweet boy will be lucky enough to make a few genuine and lasting friendships. He deserves that connection. After all, isn’t that what we all want for our children?
So yes, I encourage parents to continue the conversations on kindness. Keep discussing differences and acceptance and inclusion. But also take it a step further. Remind them that kids with differences want the same things they do. Ask them to truly make an effort to get to know others who may be a bit different. They might find those kids have more to offer than they realize. As my favorite book Wonder says, “it’s not enough to be friendly, you have to be a friend.”
The Challenges of ADHD: What I Want Others to Know
One might think that in the land of medical diagnoses, Apert syndrome may be more challenging than ADHD. One would be wrong. (In some ways, anyway.)
Sometimes we go days without giving Apert syndrome another thought. When surgeries aren’t looming and social interactions are positive, I may even go as far as to say we “forget” Aiden even has a rare craniofacial condition. But ADHD? It’s a giant struggle each and every day.
I don’t often talk about the challenges we face with it because it seems so commonplace. Everyone either has a child with ADHD or knows someone who does. However when I think back to before we got the “formal” diagnosis and how I was at my wits end thinking “what am I doing wrong???” I decided that sharing some of the characteristics might help someone else who may be where I was 4 years ago.
Just the other day, while sitting in the waiting room of my child's psychologist, I thumbed through the book "Smart But Scattered"[1] that I pulled from the resource library. After reading the first few pages it was as if they had written about Aiden himself! The authors describe a familiar scene - telling your child to clean their room - and how that plays out for someone with ADHD. Not only is the room a disaster to begin with (because it's ALWAYS a mess), but the amount of time spent in there is minimal before they become completely overwhelmed and beg to do it later.
Okay so you may be thinking “what kid enjoys cleaning their room and does it without a fight?” True, it’s not an uncommon family struggle. But the key difference is that it is not limited to just the task of cleaning his room. It could be something as simple as telling him to brush his teeth or hang up his coat that would elicit a full-fledged foot stomping, throw-himself-to-the-ground meltdown. The more complex the task, the bigger the response.
Dealing with behavior like this is exhausting - for both parties! I would try to reason, reward or redirect each time to no avail. And I would always end up thinking “how can I be raising such a brat?” or “what am I doing wrong???” My other kids were able to regulate their emotions and follow simple commands with far less push-back so it did not make sense. I would seek feedback at school in the early years, sure that his teachers would recognize the same behavior problems we dealt with at home but they would always say he is a good kid who listens well. Good news for most, but so frustrating for me as it was proof that he COULD behave for others and yet was CHOOSING to misbehave for me.
Something had to give.
When Aiden was in 2nd grade, his teacher and I discussed the possibility that we could be looking at ADHD. I was never one for jumping into medication as a solution and still wasn’t educated enough about ADHD to know if that’s what we were dealing with definitively. At one point, however, his teacher suggested it may be a good idea to have him formally evaluated. I scheduled an appointment with a child psychologist who specialized in ADHD.
The testing consisted of a few questionnaires - one to be completed by his teacher and one by a parent - as well as a full day of evaluation in the psychologists office. There were online assessments, IQ tests, and observations of emotional and social reasoning skills. A couple weeks later the results were calculated and a follow-up appointment was set to discuss. I remember walking in and asking “well, does he have ADHD?” I’ll never forget her response. The psychologist said “Not only does he have it, the severity is pretty significant”. I burst into tears and she put her hand on my shoulder to comfort me. “It’s okay,” she said, “we will
figure it all out.” However I wasn’t crying out of fear or disappointment. I was crying in relief. All this time I wondered why he couldn’t just behave! And now I knew it wasn’t his fault or mine. The diagnosis meant there would be a course of treatment to improve things. Amen!
Right after the relief, I immediately wondered "where do we go from here?" Still hesitant to medicate, I began researching ADHD a little more. By the time 3rd grade rolled around, we had updated his IEP to include the diagnosis, implemented fidgets in the classroom, and put a clear plan in place as to how the teacher would help redirect Aiden when he would get off task. It worked for a while, but it became clear that those measures simply wouldn't be enough. His grades were being negatively impacted due to attention and focus issues and he was becoming a distraction to his peers. We collectively agreed that perhaps medication was the next step.
I started to research again and came across information about a genetic test that would help determine which ADHD medication would be best suited to Aiden's particular genetic makeup. Unfortunately, most of those tests were not covered by insurance and the out of pocket cost was more than $1000! One of the labs I spoke with directly told me to look into an over the counter version that was offered at some local drug stores. I called around and found that Rite Aid had the test! It was a simple swab, done right there in the store, that was then sent off for the genetic results. So I hurried to Rite Aid and had it done immediately for just $75. (Which was a good thing because I heard shortly after it was discontinued there and wouldn't be offered anywhere).
A few weeks later the results were received! It clearly labeled each type of ADHD medication and color coded them according to which ones were recommended for Aiden. This gave us a perfect starting point on which medication to start with. I say starting point because as I would learn very quickly, even with this extra information, ADHD medication is highly individually sensitive. What works for one child will definitely not work for every child. And furthermore, what works for one child may not work for that SAME child several months later. Getting the type and dosage right would prove to be quite an ongoing challenge.
Aiden is currently on Vyvanse daily and a small dose of Adderal Monday through Friday at school. We recently added a new "medical food" supplement called Vayarin as well. We have to monitor the potential side effects - trouble sleeping, weight-loss (he cannot afford to lose any at all as he is currently on the very low end of the growth chart), moodiness, etc. and with frequent communication with his teachers, we are doing our best to manage ADHD in a way that will help him succeed both at school and at home.
I share all of this so that others are aware of and able to recognize some of the characteristics of ADHD in their own children or in others and to help people understand that:
1) ADHD is a neurological deficit - it isn't "made up", it isn't meant to excuse poor behavior and while some may say it is "overdiagnosed" that doesn't mean it isn't a very real condition for many.
2) Medication isn't a cure-all for ADHD, but it certainly can help. Don't be afraid to try it! I was hesitant for YEARS...and then once I saw how having the proper medication helped Aiden reach his potential in the classroom I felt guilty that I waited so long.
3) Treating ADHD requires a LOT of patience and isn't an exact science. There is no one-size-fits-all solution. It will take a combination of doctor visits, therapy, interventions at school, medication and diet changes and the amount of each needed will constantly change.
I continue to research ADHD so that I can learn how to best help my child. One day he will spread his wings to fly and building the foundation now to give him the skills he needs down the road is the least I can do. Most importantly, Aiden will always be more than his diagnoses. Apert syndrome has never defined him, and ADHD will not either. No matter how frustrated I get every time I tell him to clean his room...
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[1] Peg Dawson, EdD, Richard Guare, PhD. “Smart but Scattered: The Revolutionary "Executive Skills" Approach to Helping Kids Reach Their Potential.” New York, NY: The Guildord Press, 2009.
Click here to purchase "Smart but Scattered" on Amazon using my affiliate link. By doing so I will get a small commission which helps me to keep this blog up and running. Thank you!
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[1] Peg Dawson, EdD, Richard Guare, PhD. “Smart but Scattered: The Revolutionary "Executive Skills" Approach to Helping Kids Reach Their Potential.” New York, NY: The Guildord Press, 2009.
Click here to purchase "Smart but Scattered" on Amazon using my affiliate link. By doing so I will get a small commission which helps me to keep this blog up and running. Thank you!
MomLife Louisville || House of Boom!
This post is looooong overdue and I could list eleventy-billion excuses for why it hasn't been written yet, but the short and long of it is that I simply haven't gotten around to it. But today, as Aiden is getting ready to turn 10 (on Sunday), I was reminiscing about this past year and everything he has been through. One of the very biggest highlights from before his major surgery was being able to throw an awesome "Super Aiden" going away party of sorts before we left for Texas.
Back in May (yes, May 2017), we invited all of our nearest and dearest neighborhood friends to celebrate with us at House of Boom. We booked their "Boom 10" party package that included the below:
Back in May (yes, May 2017), we invited all of our nearest and dearest neighborhood friends to celebrate with us at House of Boom. We booked their "Boom 10" party package that included the below:
- 1 hour flight ticket for each guest
- exclusive use of party room for 45 minutes after jumping
- party hostess to assist with setup and cleanup
- table cover, plates, utensils, cups and napkins
- t-shirt for the party guest of honor
- grip socks for each jumper
This wasn't anyone's first visit to House of Boom and as usual, everyone had an awesome time. It is the PERFECT place for active kids to get their energy out while having fun! Because House of Boom is pretty much a wide-open space, parents can find a spot on one of their benches or a comfy couch in the upper observation deck and have a full view of each area. But usually, you'll find parents tagging along with their kids and joining in on the fun!
If you want to visit House of Boom on your own outside of a party, they offer 60, 90 and 120 minute flight passes every day of the week. Peak times do sell out so it is recommended that you book your tickets online in advance and arrive 15 minutes before your flight time. They also offer a $3-4 discount for jumpers under the age of 7. Each jumper needs to have a waiver on file and kids 13 and under have to have a parent on the premises at all times.
I recommend booking a party outside of peak times simply because when it gets crowded it can be a little overwhelming for little ones and the wait times for some of the activities gets kind of long. There is a trapeze where kids can swing and fall into a pit, a ropes-type ninja course, a tight-rope across a pit and an area to bounce and flip into a foam pit as well. Aiden's party was on a Sunday evening at 7pm and we pretty much had the place to ourselves!
As a busy family with 4 boys, going to House of Boom is always suggested when we have some downtime in our schedule. And I have to say, it is usually a win-win because not only do they have fun, but they are thoroughly worn out when all is said and done so bedtime is a lot easier :)
* I received a complimentary House of Boom party package through a partnership with USFamilyGuide.com. We were so grateful for the opportunity to use the party for this purpose before Aiden's surgery. As always, all opinions are honest and my own.
2017: Facing Many Changes
I clearly remember the anxiety that overcame me the minute the ball dropped last New Year's Eve. Once we said goodbye to 2016, it meant we were entering "the year that Aiden would have his midface surgery". It became real. We had to start saying "this year" rather than "in the future" when discussions on the subject would come up. The anticipation for this part of his journey had lingered for so long that the build up almost broke me.
In February we got a date confirmed for the mid-face advancement procedure and an official countdown began. My emotions were strapped in tight on the scariest roller coaster you could ever imagine. Most of the time I would be okay to function normally, participate socially, smile freely. But underneath the surface my nerves were shot.
My health suffered. I felt like a failure as a mom because there were so many moments I had to lock myself in my room to cry. The stress took a toll on my body and I bounced around from doctor to doctor begging someone to figure out why I felt like a 36 year old woman trapped in an 85 year old's body.
And yet time didn't stop, May 19th still steadily approached.
As someone with a type-A personality, always wanting to plan things and control the outcomes, the unknowns that surrounded the major procedure my 9 year old son was going to undergo left me feeling completely out of sorts. I found a wonderful therapist who was worth every penny, but even that was no match for the craziness that swirled about my head on a daily basis. I used to be someone who kept a clean house, stayed on top of the laundry, meal-planned and cooked healthy dinners several nights a week. Someone who loved to write. Someone who felt pretty confident in her abilities to be a decent mom and manage the chaos that is mothering 4 boys under 10.
In April, we went on spring break with a group of friends. For the second year in a row we had 14+ kids and 12 adults sharing a large beach house. It was totally crazy and definitely fun, but every second felt like I was watching it happen through the lens of "what-ifs". Every photo I took of the boys playing carefree in the sand was snapped with a lump in my throat and the gruesome thought "what if this is the last time we are on the beach together as a family of 6".
My friend Cara happens to be an amazing photographer so when I asked if she would take our family photos that year in Destin, she happily obliged. I remember applying makeup to my sunburned face and having to put my mascara on last because of the tears I cried thinking that these would be the last professional pictures we would have as a family before Aiden's surgery. The last photos we would have of Aiden the way he was then. My mind raced, "What if these were the last family pictures with Aiden we had...ever?"
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| Photo Credit: Caroline Couture Photography |
May began and we tied up loose ends. Everyone rallied around our son with Super Aiden t-shirts, care packages and lots and lots of visits with friends and family. And then, on a sunny morning in mid-May, we said our good-byes, kissed the other boys and piled in the car careening towards the biggest unknown of all. "What if Aiden doesn't come home?"
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Handing him over was still just as difficult as it always is. Ricky and I sat silently in the family waiting room but our hearts spoke through the worry on our faces. "Please let him come back to us."
In just 4 short hours the surgery was complete and although we still had several weeks of enduring the RED device, my biggest fear subsided. I started to breathe again. He was okay. We were going to be okay. The first few weeks were the hardest. He was sad, not himself. Who could blame him. When he began doing cannonballs into the pool we knew we would make it through this too. The days were slow but the weeks flew by and before we knew it we were heading back to Dallas for the removal of the device. The final weight to be lifted off our shoulders.
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Adjusting to Aiden's new look was slow at first. We had so many mixed emotions as we stared at a boy who looked one way 8 weeks earlier and totally different now. He bounced back quickly and had a new sense of confidence which made it easier for us to accept the change.
It wasn't long after things settled down that I finally took time to care for myself. I was eventually diagnosed with Hashimotos thyroiditis, an autoimmune disease that affects the function of your thyroid. I had been on medication for hypothyrodism for years but the underlying issue was (and may have always been) Hashimotos. With a clearer diagnosis, a new endocrinologist, some new medication and significant diet changes, I started on the right path to feeling better.
Although the surgery was behind us, I think I underestimated the time it would take for my mind and heart to heal. For many more weeks, months even, I felt like I was treading water, never able to make it to the edge for a break. I wasn't drowning anymore, but I was definitely still having trouble keeping my head above the splashes that even just a back to "normal" life surrounds you with.
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| My 2017 "Best Nine" photos from Instagram (the pictures with the most "likes"). Clearly indicates what our biggest event from this year was! Visit @MoreSkeesPlease on Instagram to follow our family. |
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Looking back, this entire year has mostly been a blur. There were so many good moments - wonderful friends that lifted our family up in ways that I'll never quite be able to adequately express gratitude for. Family who literally put their lives on hold to help us sort ours out. And the overwhelming relief of a successful surgery and smooth transition from Aiden before the RED to the new Aiden after the RED.
My strength and resolve was tested for sure, but with the love from those closest to us and even the support from complete strangers who prayed for a little boy they have never met, I'm happy to say I have found a renewed faith in God. My mind feels clear and my heart at ease. I am ready to take on 2018. Oh so grateful for the both the valleys and the peaks. Oh so grateful for this crazy beautiful life.
What Is the Mid-Face Advancement Surgery and the RED device?
102 days from surgery.
A friend asked me the other night, "So what exactly will they be doing?" As many times as I've talked about this procedure, I surprised that I found myself a little stumped on how to answer. I can tell you what the device is called, how it is attached, what the purpose of it is...but anything more in depth gets a little fuzzy. So I went to Aiden's surgeon's website and pulled information that can explain it much better than I can. Below is a summary that answers some of the most common questions I receive about this procedure.
- The LeFort III brings the entire midface forward in one piece from the upper teeth to just above the cheekbones and the monobloc brings both the midface and the forehead forward together at the same operation.
- Although the LeFort III is a major operation, of all the different procedures done for Apert syndrome it has the greatest impact on normalizing a child’s appearance and improving breathing at night.
- In 1998 [Dr. Fearon] developed what is called a halo-distraction technique for the LeFort III. This technique utilizes a device called the RED, which is actually not red, but purple in color. It gets its name for being a Rigid External Distraction device.
- With the RED procedure the bones of the mid face are cut loose then the skin is closed and a halo is attached to the outside of the skull with 8-10 screws. A splint (U-shaped piece of plastic) is attached to the upper teeth and two wires extend forward from this splint to attach to the halo.
- The forward pull of the midface comes from the dental splint. The parents, or the child, turn two screws on the device 2 to 3-times day in order to slowly (and painlessly!) bring the midface forward.
- The children are allowed to eat soft foods, may go to school, and can even go swimming while wearing the RED. For some children wearing this device after surgery is easier than for others.
- Seven to eight weeks later, the device is removed with a 20-30 minute anesthetic.
- The greatest advantage of the RED device is that it enables surgeons to move the midface much further forward than is possible the traditional technique (based on a study done at our center).
- We have treated over 125 children with this technique, and continue to make fine improvements in this procedure.
Below are some photos shared with permission from friends in the craniofacial community who's children have undergone the RED surgery already.
If you have any questions, please know that I am always happy to answer them! I may have to look it up myself, as I'm no expert on this by any means, but I will never be offended by the opportunity to learn and share. Just be warned that I do get emotional talking about it in person...so perhaps email would be better ;)
Feeling Blue About the RED
105 days.
That's how long sits between now and the day that our little boys face will be changed forever. As most of you know, Aiden has something called Apert syndrome. Along with the more than 12 procedures Aiden has already had, kids with Apert syndrome more often than not require what is called a mid-face advancement because the portion of their face from their brow bone to their upper jaw does not grow at the proper rate. The goal of the mid-face advancement surgery is to pull that section forward gradually. It is medically necessary in order to expand the airway in order to prevent apnea (and thus developmental delays), to address anatomical issues with the palate (which affects speech and sometimes eating), and finally, to "improve" physical appearance.
Improve physical appearance? That one kind of hurts my heart because, you see, I don't think Aiden needs his appearance improved one bit. I think my little soon to be 9 year old boy, who has had his skull broken open and pieced back together more than once, is perfect just the way he is.
I remember sitting in Dr. Fearon's office 8 years ago listening to him tell us what the typical treatment plan is for individuals with Apert syndrome. Along with sharing about the procedures to separate their fused fingers and toes, I clearly recall him casually mentioning this mid-face advancement, done around age 8 or 9, and thinking 'thank goodness we don't have to worry about that for a long time'.
And yet here we are, 105 days away, no longer a long time.
Our last trip to Dallas was fall of 2015. It was our craniofacial clinic where we bring Aiden for a round-up of appointments to check his growth, how much space his brain has in his skull, and monitor his sleeping to see if his apnea has progressed. We spend a full day bouncing from one specialist to another before finally heading to Dr. Fearon's office for his interpretation of all the tests. Because we were approaching Aiden's 8th birthday at the time, we fully expected to start the planning process for the mid-face advancement to be in May of 2016. But, we were surprised when he said that Aiden was doing well enough to postpone for another year. Nothing can describe the wide range of emotion we felt hearing those words: relief that he was doing so well, excitement that we would get to spend another summer surgery-free, and yet, also disappointment knowing we would have to endure the anxiety of anticipating this major surgery for yet another year.
We have been blessed to spend the past few years without having to put Aiden through any major procedures. In fact, he has been doing so well that I ultimately began to question whether Aiden would need the mid-face advancement at all. I had always been told that it wasn't a matter of if, but a matter of when. We would know when he needed it if he was not sleeping well due to snoring, if he was not breathing well, especially when sick with a cold, and if he was being severely made fun of because of his appearance. Now I know more goes in to it than that, but after thinking each of those things through, it became confusing to me. Aiden slept fine and rarely snored, he was able to stave off a cold in a normal amount of time (and in fact rarely got sick anymore at all), and although he does still get his fair share of stares and comments, I wouldn't call it severe teasing by any means. I was actually convinced that Dr. Fearon would say Aiden didn't need the RED afterall. In a moment of panic, I emailed him requesting a firm explanation on exactly why this is medically necessary FOR AIDEN specifically.
I'm sure I wasn't the first concerned parent to request more reassurance - and it felt good to seek a better understanding as Aiden's advocate. Dr. Fearon replied the next day with a thorough explanation. Our hopes for Aiden to escape the need were dashed.
We have been preparing ourselves in many ways over the past few months. Aiden regularly goes to a child psychologist whom he really trusts and feels comfortable opening up to about how he's feeling. I too have sought out a therapist to help me deal with my emotions as well. We talk about it only when Aiden brings it up or we need to, which is unfortunately becoming more and more often. We lean on our close-knit support group of other craniofacial families who's children have already had this procedure before us. One of our dear friends, John, actually boxed up his removed RED device and shipped it to us across the country just so Aiden could check it out closely first-hand. He along with numerous other kiddos have offered to answer questions on what to expect or any other topic Aiden might want to ask about. And I can't tell you how many times I've sat in a parking lot conducting my own kind of therapy session chatting on the phone with another cranio mom who knows exactly how it feels to be where I am right now. My goodness how all of these things have been and will continue to be life-lines to us. So very grateful.
Surgery is confirmed for May 19th, 2017. That gives us 105 days to soak up our little boy just the way he is. To prepare our hearts for the changes that are to come. This is a hard road, but we know we will get through it because we are not alone.
That's how long sits between now and the day that our little boys face will be changed forever. As most of you know, Aiden has something called Apert syndrome. Along with the more than 12 procedures Aiden has already had, kids with Apert syndrome more often than not require what is called a mid-face advancement because the portion of their face from their brow bone to their upper jaw does not grow at the proper rate. The goal of the mid-face advancement surgery is to pull that section forward gradually. It is medically necessary in order to expand the airway in order to prevent apnea (and thus developmental delays), to address anatomical issues with the palate (which affects speech and sometimes eating), and finally, to "improve" physical appearance.
Improve physical appearance? That one kind of hurts my heart because, you see, I don't think Aiden needs his appearance improved one bit. I think my little soon to be 9 year old boy, who has had his skull broken open and pieced back together more than once, is perfect just the way he is.
I remember sitting in Dr. Fearon's office 8 years ago listening to him tell us what the typical treatment plan is for individuals with Apert syndrome. Along with sharing about the procedures to separate their fused fingers and toes, I clearly recall him casually mentioning this mid-face advancement, done around age 8 or 9, and thinking 'thank goodness we don't have to worry about that for a long time'.
And yet here we are, 105 days away, no longer a long time.
Our last trip to Dallas was fall of 2015. It was our craniofacial clinic where we bring Aiden for a round-up of appointments to check his growth, how much space his brain has in his skull, and monitor his sleeping to see if his apnea has progressed. We spend a full day bouncing from one specialist to another before finally heading to Dr. Fearon's office for his interpretation of all the tests. Because we were approaching Aiden's 8th birthday at the time, we fully expected to start the planning process for the mid-face advancement to be in May of 2016. But, we were surprised when he said that Aiden was doing well enough to postpone for another year. Nothing can describe the wide range of emotion we felt hearing those words: relief that he was doing so well, excitement that we would get to spend another summer surgery-free, and yet, also disappointment knowing we would have to endure the anxiety of anticipating this major surgery for yet another year.
We have been blessed to spend the past few years without having to put Aiden through any major procedures. In fact, he has been doing so well that I ultimately began to question whether Aiden would need the mid-face advancement at all. I had always been told that it wasn't a matter of if, but a matter of when. We would know when he needed it if he was not sleeping well due to snoring, if he was not breathing well, especially when sick with a cold, and if he was being severely made fun of because of his appearance. Now I know more goes in to it than that, but after thinking each of those things through, it became confusing to me. Aiden slept fine and rarely snored, he was able to stave off a cold in a normal amount of time (and in fact rarely got sick anymore at all), and although he does still get his fair share of stares and comments, I wouldn't call it severe teasing by any means. I was actually convinced that Dr. Fearon would say Aiden didn't need the RED afterall. In a moment of panic, I emailed him requesting a firm explanation on exactly why this is medically necessary FOR AIDEN specifically.
I'm sure I wasn't the first concerned parent to request more reassurance - and it felt good to seek a better understanding as Aiden's advocate. Dr. Fearon replied the next day with a thorough explanation. Our hopes for Aiden to escape the need were dashed.
We have been preparing ourselves in many ways over the past few months. Aiden regularly goes to a child psychologist whom he really trusts and feels comfortable opening up to about how he's feeling. I too have sought out a therapist to help me deal with my emotions as well. We talk about it only when Aiden brings it up or we need to, which is unfortunately becoming more and more often. We lean on our close-knit support group of other craniofacial families who's children have already had this procedure before us. One of our dear friends, John, actually boxed up his removed RED device and shipped it to us across the country just so Aiden could check it out closely first-hand. He along with numerous other kiddos have offered to answer questions on what to expect or any other topic Aiden might want to ask about. And I can't tell you how many times I've sat in a parking lot conducting my own kind of therapy session chatting on the phone with another cranio mom who knows exactly how it feels to be where I am right now. My goodness how all of these things have been and will continue to be life-lines to us. So very grateful.
Surgery is confirmed for May 19th, 2017. That gives us 105 days to soak up our little boy just the way he is. To prepare our hearts for the changes that are to come. This is a hard road, but we know we will get through it because we are not alone.
A letter to the NICU nurses who were there when Aiden was born
Last week we celebrated Aiden's birthday with 7 candles on the cake. As most parents do, each year I say, where did the time go? The first couple years of Aiden's life were some of the toughest. But these last few? Nothing short of amazing.
If you haven't followed our story from the beginning, below are some of my first posts ever, as he was the reason I started this blog.
Aiden's Birth Story
He's Home!
More Great News
Not in the reading mood? Below is the trailer to a short film created for us several years ago about the start of Aiden's journey with Apert syndrome. (Shout out to Tommy Nolan of Creative Video Solutions!)
As I reminisce about the roller coaster ride that started with the diagnosis of our son's rare condition, I'm often transported over and over again to the delivery room. The hushed doctors, the dim lights, the beeping machines. Aiden was whisked away to the NICU where he spent the next 2 weeks, while Ricky and I wrestled our emotions within the quaint concrete walls of the Ronald McDonald House Family Room housed in the lower level of the same hospital. I walked those halls - back and forth, upstairs and down - for 14 days. Delirious. Dazed. Grieving. And although I knew nobody could make it better - make him better - I came to appreciate the tenderness of the nurses who tried to help our boy as we wondered how to heal our hearts.
Dear NICU nurses who were there when our boy was born,
It's been 7 years, so this "thank you" has been a long-time coming. The early days left little to be thankful for as our assumption of a healthy 2nd baby boy was abruptly replaced with shock, fear and anger. A sterile stay in the NICU is probably not how most families expect to start their journey with a new baby, so I'm sure you are used to the flux of emotions that come from our end of things. Looking back now though, I am able to truly grasp the gratitude I hold in my heart.
Thank you for being there for my son. While my hands were shaky, trembling with fear, your warm and steady touch reassured him when I could not. You see, I was too scared. It sounds crazy, too scared to touch my own son, but with wires and leads and tubes attached to him in various places, I was terrified that I'd do him more harm than good if I stroked his belly wrong or made him wiggle too much.
Thank you for your tenderness. You saw that we were scared. Scrubbing your hands and arms up to your elbows for a strict 3 minutes might be commonplace to you, but doing so before being allowed in to see our baby was definitely new to us. The first time around, we had the freedom to scoop up our infant as he slept within arms reach. We heard him breath all night long without buzzing machines and dinging bells. We felt like parents, not like visitors. When we stood outside the NICU doors with tear stained cheeks and bleary eyes, you stopped what you were doing to welcome us in. When just about everyone else met us with frowns and uncertain emotion, you didn't. Even though I couldn't see behind your protective mask, I could tell from your eyes that you were smiling. You walked us to our son's isolette, decorated with a big construction paper heart with his name, and reminded us that this home of his was temporary. You gave us hope when we had none.
Thank you for your respect. You spoke to us in direct terms that we could mostly understand. And if by chance we didn't, you never made us feel silly for asking questions. When I was too nervous to give my own son his first bath, you walked me through it step by step. When I voiced my concerns, you listened. Even when we sometimes felt like it, you never treated us like victims. We were Aiden's mommy and daddy, plain and simple. You never made us feel small - and that helped to build our confidence.
Thank you for your patience. Every night we made a list of questions. We made you stand there answering each one while we crossed them off our list. Sometimes, when we couldn't sleep, we came up at 3 or 4 in the morning to ask them again just so we could spin the answers around in our head and give our minds something to focus on. When I couldn't hear your responses through my heaving sobs, you gave me a moment to collect myself and simply tended to my child's needs. If I argued or got angry or demanded something of you, you understood it as raw emotions and didn't dish it back to me even when I may have deserved it. I promise I wasn't trying to be rude. I was just scared. Thank you for letting me be scared.
Thank you for your encouragement. I was told many scary things about my son in those first few days. I watched as doctor after doctor came in to shuttle him from test to test. Talk of brain bleeds, organ problems, breathing issues, severe mental delays - I was flooded with so many negatives that my entire existence was shaken to its core. I searched for normal. And even though they said I would not be able to nurse my boy because of the anatomy of his mouth, something inside of me made me want to. When he was no longer intubated, you let me try. You showed me latching tricks and pulled up a rocking chair and shooed visitors when I was getting frustrated. You probably don't know this but I successfully nursed Aiden for 4 months. Had you told me no like everyone else had, I would have missed out on an invaluable lesson on perseverance. Something we have carried on into every aspect of Aiden's life.
Please let this long overdue thank you letter serve as reminder on those really tough days - when you let the fear and misguided emotions from scared and tired parents make you doubt your very important role. We certainly didn't find hope from the doctors with their rushed search for answers, confusing big-words and "prepare for the worst" attitude. Without you, we would not have survived. HE would not have survived. We will be forever grateful.
Every year on his birthday, I think of you. And I'm finally getting around to letting you know.
Love,
A NICU mom
If you haven't followed our story from the beginning, below are some of my first posts ever, as he was the reason I started this blog.
Aiden's Birth Story
He's Home!
More Great News
Not in the reading mood? Below is the trailer to a short film created for us several years ago about the start of Aiden's journey with Apert syndrome. (Shout out to Tommy Nolan of Creative Video Solutions!)
As I reminisce about the roller coaster ride that started with the diagnosis of our son's rare condition, I'm often transported over and over again to the delivery room. The hushed doctors, the dim lights, the beeping machines. Aiden was whisked away to the NICU where he spent the next 2 weeks, while Ricky and I wrestled our emotions within the quaint concrete walls of the Ronald McDonald House Family Room housed in the lower level of the same hospital. I walked those halls - back and forth, upstairs and down - for 14 days. Delirious. Dazed. Grieving. And although I knew nobody could make it better - make him better - I came to appreciate the tenderness of the nurses who tried to help our boy as we wondered how to heal our hearts.
Dear NICU nurses who were there when our boy was born,
It's been 7 years, so this "thank you" has been a long-time coming. The early days left little to be thankful for as our assumption of a healthy 2nd baby boy was abruptly replaced with shock, fear and anger. A sterile stay in the NICU is probably not how most families expect to start their journey with a new baby, so I'm sure you are used to the flux of emotions that come from our end of things. Looking back now though, I am able to truly grasp the gratitude I hold in my heart.
Thank you for being there for my son. While my hands were shaky, trembling with fear, your warm and steady touch reassured him when I could not. You see, I was too scared. It sounds crazy, too scared to touch my own son, but with wires and leads and tubes attached to him in various places, I was terrified that I'd do him more harm than good if I stroked his belly wrong or made him wiggle too much.
Thank you for your tenderness. You saw that we were scared. Scrubbing your hands and arms up to your elbows for a strict 3 minutes might be commonplace to you, but doing so before being allowed in to see our baby was definitely new to us. The first time around, we had the freedom to scoop up our infant as he slept within arms reach. We heard him breath all night long without buzzing machines and dinging bells. We felt like parents, not like visitors. When we stood outside the NICU doors with tear stained cheeks and bleary eyes, you stopped what you were doing to welcome us in. When just about everyone else met us with frowns and uncertain emotion, you didn't. Even though I couldn't see behind your protective mask, I could tell from your eyes that you were smiling. You walked us to our son's isolette, decorated with a big construction paper heart with his name, and reminded us that this home of his was temporary. You gave us hope when we had none.
Thank you for your respect. You spoke to us in direct terms that we could mostly understand. And if by chance we didn't, you never made us feel silly for asking questions. When I was too nervous to give my own son his first bath, you walked me through it step by step. When I voiced my concerns, you listened. Even when we sometimes felt like it, you never treated us like victims. We were Aiden's mommy and daddy, plain and simple. You never made us feel small - and that helped to build our confidence.
Thank you for your patience. Every night we made a list of questions. We made you stand there answering each one while we crossed them off our list. Sometimes, when we couldn't sleep, we came up at 3 or 4 in the morning to ask them again just so we could spin the answers around in our head and give our minds something to focus on. When I couldn't hear your responses through my heaving sobs, you gave me a moment to collect myself and simply tended to my child's needs. If I argued or got angry or demanded something of you, you understood it as raw emotions and didn't dish it back to me even when I may have deserved it. I promise I wasn't trying to be rude. I was just scared. Thank you for letting me be scared.
Thank you for your encouragement. I was told many scary things about my son in those first few days. I watched as doctor after doctor came in to shuttle him from test to test. Talk of brain bleeds, organ problems, breathing issues, severe mental delays - I was flooded with so many negatives that my entire existence was shaken to its core. I searched for normal. And even though they said I would not be able to nurse my boy because of the anatomy of his mouth, something inside of me made me want to. When he was no longer intubated, you let me try. You showed me latching tricks and pulled up a rocking chair and shooed visitors when I was getting frustrated. You probably don't know this but I successfully nursed Aiden for 4 months. Had you told me no like everyone else had, I would have missed out on an invaluable lesson on perseverance. Something we have carried on into every aspect of Aiden's life.
Please let this long overdue thank you letter serve as reminder on those really tough days - when you let the fear and misguided emotions from scared and tired parents make you doubt your very important role. We certainly didn't find hope from the doctors with their rushed search for answers, confusing big-words and "prepare for the worst" attitude. Without you, we would not have survived. HE would not have survived. We will be forever grateful.
Every year on his birthday, I think of you. And I'm finally getting around to letting you know.
Love,
A NICU mom
More Than A Mom: How My Kids Helped Me Figure Out 'What I Wanted to be When I Grew Up'
To help me prepare for some of my upcoming speaking gigs (and to finally satisfy my dad's unrelenting request to join), I recently became a member of Toastmasters. Basically it is your dreaded college Public Speaking course but more formal...and more terrifying. I thought getting up in front of a small group of complete strangers and speaking would be easier. I was wrong. However once I got through my first big assignment - the ice breaker speech - I started to feel a little more at ease.
I decided to share my ice breaker speech from Toastmasters below. If you've been a long time reader of More Skees Please (thank you!) then you already know most of the story. If you are just landing here, welcome! This is a good "in a nutshell" piece to get you up to speed. Either way, I hope you enjoy! Thanks for visiting!
When you hear stay-at-home mom – what comes to mind? A working mom might think: Lucky. A career-driven, childless friend might think: Worthless. A family man might think: Traditional. A corporate ladder-climber might think: Incompetent.
“What do you DO all day?” some wonder as they envision the stereotypical images of lounging on the couch in fluffy slippers eating bonbons.
I was a gifted student, always applied myself, made good grades and went on to earn a college degree, but I never quite had a true sense of what I wanted to be when I grew up. Except I knew one thing for certain, I wanted to be a mom. Yes, and, I wanted to be a stay-at-home mom.
My husband, Ricky, and I both attended Bellarmine, although we met on spring break in Daytona – but that’s an entirely different story for a difference crowd. After graduating, I felt compelled to do a little soul searching so I enrolled in an acting course in Burbank, CA and headed out west with stars in my eyes. I had dabbled in acting as a child – starring in dozens of commercials, print ads and even a feature film called Men Don’t Leave where I played Jessica Lange’s niece. However, I quickly learned that being a child actor where your mom drives you to all your auditions and rewards you for a job well done with dinner at McDonald’s is vastly different than attempting to make show business a career as an adult.
While I excelled at Film School, the pull of home, and my boyfriend of several months, was stronger than my desire to become famous. At the end of the 6 weeks I made the trek back to the good ol’ midwest.
Shortly after that experience I found happiness starring in my own fairy tale of sorts. I married said long-term boyfriend in 2005 and we welcomed our first baby boy, in March of 2007. I had gotten a job in marketing just before our wedding and had every intention on continuing to work full-time...until I had my son. I loved my job, and was well-respected there, but I loved my new role as a mom even more.
We couldn’t afford for me to stay home at that point, so I presented my employer with a well-written
flexible work proposal. Knowing it might have been a long-shot, I was surprised when they granted me the opportunity to work from home a few days a week, the first ever flex schedule the company had approved.
Fast forward 3 months. My husband returned from a weekend bachelor party to find me anxiously waiting for him to start making dinner. “Check the oven first to make sure there’s nothing in it” I told him from the living room. Groggy from the festivities he had partaken in, I waited, and then heard “hey babe, why is there a bun in the oven?” Waited some more. Heard him whisper “there’s a bun in the oven” confused. And finally, he flew into the living room...”Wait, there’s a bun in the oven?” We were pregnant again and due before my first son’s first birthday.
Before our second baby boy arrived, we were nervous about having 2 so close together. We knew it was going to be tough. We had no idea how tough. Aiden arrived 5.5 weeks early and shocked everyone, including the doctors, when he presented with some major anomalies. His fingers were fused together, bound up in tight little fists. His toes webbed, his face scrunched. The room had gone silent – not even the OB or nurses had seen this before. We learned later that our second boy had something called Apert syndrome. A very rare craniofacial condition that occurs only once in every 160,000 births.
After a 2 week stay in the NICU, we were attempting to make sense of our new life. Along with his condition came appointments, therapies, surgeries. Needless to say it became almost impossible for me to consider going back to work. And thus, my stay-at-home mom gig commenced. Not quite the way I had envisioned it.
We are living a very different life than we had imagined as fresh-faced newlyweds, but one that is more fulfilling than I ever could have hoped. I am a mom, just as I had wished to be. And a stay-at-home mom to now FOUR beautiful boys. But the thing that is most amazing about our journey is how motherhood has defined my life. And I don’t mean in a bad way.
I’ve always loved to write and in an effort to keep family members informed about Aiden’s medical journey, I began this blog in 2008. Since that time, it has morphed into a lifestyle, parenting and special needs blog with an audience much broader than just friends and family. It has led to outside writing opportunities and published pieces. More importantly, through my blog I have been contacted by families world-wide who have a child with Apert syndrome. Seeing our positive approach and how we advocate for Aiden has inspired countless people. In turn, it has inspired me to take it one step further and create my own nonprofit, called apertOWL, with a mission to be a beacon of hope for those affected by this condition.
In addition, this fall I’ll be making rounds speaking to elementary and middle school kids about
celebrating and accepting differences. I am also scheduled to speak to nursing students about patient
and family centered care, drawing from our experiences in medical facilities.
So think again before you jump to conclusions about stay-at-home-moms. What some might view as a traditional role that wastes a good, solid college degree in my case has been nothing of the sort. I have the best of both worlds. Becoming a mom and embarking on an unexpected journey with a child with complex medical needs has changed me. It has strengthened my heart, solidified my relationships and inspired me to find exactly what it is I was meant to do. Motherhood has given me a purpose and a passion for something I never would have known without it.
I intend on making an impact...and some days I don’t even have to get out of my pajamas.
I decided to share my ice breaker speech from Toastmasters below. If you've been a long time reader of More Skees Please (thank you!) then you already know most of the story. If you are just landing here, welcome! This is a good "in a nutshell" piece to get you up to speed. Either way, I hope you enjoy! Thanks for visiting!
“What do you DO all day?” some wonder as they envision the stereotypical images of lounging on the couch in fluffy slippers eating bonbons.
I was a gifted student, always applied myself, made good grades and went on to earn a college degree, but I never quite had a true sense of what I wanted to be when I grew up. Except I knew one thing for certain, I wanted to be a mom. Yes, and, I wanted to be a stay-at-home mom.
My husband, Ricky, and I both attended Bellarmine, although we met on spring break in Daytona – but that’s an entirely different story for a difference crowd. After graduating, I felt compelled to do a little soul searching so I enrolled in an acting course in Burbank, CA and headed out west with stars in my eyes. I had dabbled in acting as a child – starring in dozens of commercials, print ads and even a feature film called Men Don’t Leave where I played Jessica Lange’s niece. However, I quickly learned that being a child actor where your mom drives you to all your auditions and rewards you for a job well done with dinner at McDonald’s is vastly different than attempting to make show business a career as an adult.
While I excelled at Film School, the pull of home, and my boyfriend of several months, was stronger than my desire to become famous. At the end of the 6 weeks I made the trek back to the good ol’ midwest.
Shortly after that experience I found happiness starring in my own fairy tale of sorts. I married said long-term boyfriend in 2005 and we welcomed our first baby boy, in March of 2007. I had gotten a job in marketing just before our wedding and had every intention on continuing to work full-time...until I had my son. I loved my job, and was well-respected there, but I loved my new role as a mom even more.
We couldn’t afford for me to stay home at that point, so I presented my employer with a well-written
flexible work proposal. Knowing it might have been a long-shot, I was surprised when they granted me the opportunity to work from home a few days a week, the first ever flex schedule the company had approved.
Fast forward 3 months. My husband returned from a weekend bachelor party to find me anxiously waiting for him to start making dinner. “Check the oven first to make sure there’s nothing in it” I told him from the living room. Groggy from the festivities he had partaken in, I waited, and then heard “hey babe, why is there a bun in the oven?” Waited some more. Heard him whisper “there’s a bun in the oven” confused. And finally, he flew into the living room...”Wait, there’s a bun in the oven?” We were pregnant again and due before my first son’s first birthday.
Before our second baby boy arrived, we were nervous about having 2 so close together. We knew it was going to be tough. We had no idea how tough. Aiden arrived 5.5 weeks early and shocked everyone, including the doctors, when he presented with some major anomalies. His fingers were fused together, bound up in tight little fists. His toes webbed, his face scrunched. The room had gone silent – not even the OB or nurses had seen this before. We learned later that our second boy had something called Apert syndrome. A very rare craniofacial condition that occurs only once in every 160,000 births.
After a 2 week stay in the NICU, we were attempting to make sense of our new life. Along with his condition came appointments, therapies, surgeries. Needless to say it became almost impossible for me to consider going back to work. And thus, my stay-at-home mom gig commenced. Not quite the way I had envisioned it.
We are living a very different life than we had imagined as fresh-faced newlyweds, but one that is more fulfilling than I ever could have hoped. I am a mom, just as I had wished to be. And a stay-at-home mom to now FOUR beautiful boys. But the thing that is most amazing about our journey is how motherhood has defined my life. And I don’t mean in a bad way.
I’ve always loved to write and in an effort to keep family members informed about Aiden’s medical journey, I began this blog in 2008. Since that time, it has morphed into a lifestyle, parenting and special needs blog with an audience much broader than just friends and family. It has led to outside writing opportunities and published pieces. More importantly, through my blog I have been contacted by families world-wide who have a child with Apert syndrome. Seeing our positive approach and how we advocate for Aiden has inspired countless people. In turn, it has inspired me to take it one step further and create my own nonprofit, called apertOWL, with a mission to be a beacon of hope for those affected by this condition.
In addition, this fall I’ll be making rounds speaking to elementary and middle school kids about
celebrating and accepting differences. I am also scheduled to speak to nursing students about patient
and family centered care, drawing from our experiences in medical facilities.
So think again before you jump to conclusions about stay-at-home-moms. What some might view as a traditional role that wastes a good, solid college degree in my case has been nothing of the sort. I have the best of both worlds. Becoming a mom and embarking on an unexpected journey with a child with complex medical needs has changed me. It has strengthened my heart, solidified my relationships and inspired me to find exactly what it is I was meant to do. Motherhood has given me a purpose and a passion for something I never would have known without it.
I intend on making an impact...and some days I don’t even have to get out of my pajamas.
I Better Brush Up on My Speaking Skills...
This fall I have been invited to speak to several different groups about Apert syndrome, Aiden's story and the importance of Choosing Kind. If you haven't seen already, my friend - and apertOWL partner - Kerry Lynch has been spreading the awareness throughout Chicago-area elementary schools by speaking to kids about her daughter Mary Cate who also has Apert syndrome like Aiden. Her story made the front page of the Sunday Chicago Tribune {see: Chicago family asks Chicago students to "Choose Kind"} and she was interviewed by the Australian Today Show!
Not only will I be addressing elementary students in grades K-8, I will also be sharing our story with students in the nursing and education programs at my alma mater, Bellarmine University, and with over 150 families in an adult formation group at my local parish. I am extremely excited about these opportunities.
For starters, being able to present to nursing students allows me to give them information about a rare craniofacial condition that many of them may never encounter throughout their entire nursing career (it only occurs approximately 1 out of 160,000 births). But if they should ever care for an individual with Apert syndrome, perhaps they will remember my presentation and recognize it right off the bat. With that being said, Apert syndrome is not the only rare condition they might come across, so hearing my perspective might be beneficial for them across the board.
Secondly, presenting to education students might spark ideas for them when they are one day in their own classrooms. With bullying so prevalent today, it will be a good reminder on the importance of "Choosing Kind" and how to foster an environment of acceptance among their students.
Next, I am really looking forward to engaging with the adult formation program at my church. Children have an innocent curiosity that can sometimes make for awkward situations. I've been asked by various adults how to go about handling these situations in an appropriate manner. They want to know what I would like to happen. I hope to provide insight into the kinds of things we have dealt with - both good and bad - so they can be more prepared if they or their child should want to know about another's disability in public.
Finally, I cannot wait to bring Aiden to schools and show them first hand that although he is "different", he is more like them than they think. He's just a normal kid with normal feelings. People with differences want to be accepted for who they are and NOT what they look like. Using the book Wonder by R.J. Palacio as a platform, I hope to convey the message: "When given the choice between being right or being kind, CHOOSE KIND!"
In the meantime, I'm going to take a Toastmasters class or two (my dad has been telling me to do this for YEARS) and hope that my passion for sharing about Aiden brings my nerves down a notch when I'm standing there, knees knocking, getting ready to present.
Not only will I be addressing elementary students in grades K-8, I will also be sharing our story with students in the nursing and education programs at my alma mater, Bellarmine University, and with over 150 families in an adult formation group at my local parish. I am extremely excited about these opportunities.
For starters, being able to present to nursing students allows me to give them information about a rare craniofacial condition that many of them may never encounter throughout their entire nursing career (it only occurs approximately 1 out of 160,000 births). But if they should ever care for an individual with Apert syndrome, perhaps they will remember my presentation and recognize it right off the bat. With that being said, Apert syndrome is not the only rare condition they might come across, so hearing my perspective might be beneficial for them across the board.
Secondly, presenting to education students might spark ideas for them when they are one day in their own classrooms. With bullying so prevalent today, it will be a good reminder on the importance of "Choosing Kind" and how to foster an environment of acceptance among their students.
Next, I am really looking forward to engaging with the adult formation program at my church. Children have an innocent curiosity that can sometimes make for awkward situations. I've been asked by various adults how to go about handling these situations in an appropriate manner. They want to know what I would like to happen. I hope to provide insight into the kinds of things we have dealt with - both good and bad - so they can be more prepared if they or their child should want to know about another's disability in public.
Finally, I cannot wait to bring Aiden to schools and show them first hand that although he is "different", he is more like them than they think. He's just a normal kid with normal feelings. People with differences want to be accepted for who they are and NOT what they look like. Using the book Wonder by R.J. Palacio as a platform, I hope to convey the message: "When given the choice between being right or being kind, CHOOSE KIND!"
If you know a teacher/professor, church leader, group director, etc.
interested in having me come share our story, I'd love to chat with you!
I truly believe that education is key!
interested in having me come share our story, I'd love to chat with you!
I truly believe that education is key!
Email me at moreskeesplease [at] gmail [dot] com.
In the meantime, I'm going to take a Toastmasters class or two (my dad has been telling me to do this for YEARS) and hope that my passion for sharing about Aiden brings my nerves down a notch when I'm standing there, knees knocking, getting ready to present.
I'm officially in print!
My previously posted blog from Cincy Parent magazine online can officially be found IN PRINT on (free) newstands everywhere. Well, in and around Cincinnati, Dayton and Indianapolis anyway.
Don't live near any of those cities? Have no fear! You can click below to see how it looks in the online version of the magazine.
{The article can be found by scrolling to page 21}
Don't live near any of those cities? Have no fear! You can click below to see how it looks in the online version of the magazine.
{The article can be found by scrolling to page 21}
Just like you...only different: An open letter to Aiden's Kindergarten classmates
Congratulations on this huge milestone in your lives! Kindergarten is SO much fun and such a huge step. Many of you are leaving your mommies and daddies a few hours a day for the first time ever. You may feel nervous, excited, scared and so many more emotions and that is okay.
My little guy Aiden is starting this journey too. He is most excited about riding the big yellow school bus with his brother, but he is nervous about going to a new school and making new friends.
Can I let you know a little secret? I am his mommy and I am nervous too.
You see, Aiden is a very special boy. Aiden has Apert syndrome.
When I look at him, I see his big bright eyes, his long and luscious eye lashes that would make any woman envious. I see the soft brown freckles sprinkled ever so delicately across his cheeks and nose. I am drawn to his contagious smile. I don't notice the scar on his head or that his face looks a little different.
I marvel at the hands that have been refined by an amazing surgeon giving him fingers where there once were none. I watch in awe as he twists the cap off a water bottle or cuts a piece of paper into a million scraps. I see perfectly created little toes that make shoe shopping a week-long challenge. I don't think his hands are strange or his toes are weird.
When I hear Aiden talk, I am reminded of when so many doctors and specialists told me he may have hearing loss that would effect his speech. That language may always be a struggle. Needless to say, he has proven them all wrong. When I talk to Aiden I don't think he's hard to understand.
I don't mind if you notice these special things about him. Most people do. However it is my hope that when you are learning your ABC's and colors of the rainbow, that you also learn how to accept my little boy. That before you decide not to sit next to him on the bus or share your crayons with him during art, you give him a chance.
He will make you laugh with his little jokes and silly songs. He will be a great friend, always ready to help you hang your backpack or put the blocks away. And my Aiden? He gives the best hugs, hands down.
Get to know him. That's all I ask. And when you do, you will understand - Aiden is just like you...only different.
Hope you all have a wonderful year!
Love, Aiden's mommy
My little guy Aiden is starting this journey too. He is most excited about riding the big yellow school bus with his brother, but he is nervous about going to a new school and making new friends.
Can I let you know a little secret? I am his mommy and I am nervous too.You see, Aiden is a very special boy. Aiden has Apert syndrome.
When I look at him, I see his big bright eyes, his long and luscious eye lashes that would make any woman envious. I see the soft brown freckles sprinkled ever so delicately across his cheeks and nose. I am drawn to his contagious smile. I don't notice the scar on his head or that his face looks a little different.
But I know you probably will.
I marvel at the hands that have been refined by an amazing surgeon giving him fingers where there once were none. I watch in awe as he twists the cap off a water bottle or cuts a piece of paper into a million scraps. I see perfectly created little toes that make shoe shopping a week-long challenge. I don't think his hands are strange or his toes are weird.
But you might think so.
When I hear Aiden talk, I am reminded of when so many doctors and specialists told me he may have hearing loss that would effect his speech. That language may always be a struggle. Needless to say, he has proven them all wrong. When I talk to Aiden I don't think he's hard to understand.
But it may be difficult for you to know what he's saying sometimes.
I don't mind if you notice these special things about him. Most people do. However it is my hope that when you are learning your ABC's and colors of the rainbow, that you also learn how to accept my little boy. That before you decide not to sit next to him on the bus or share your crayons with him during art, you give him a chance.
He will make you laugh with his little jokes and silly songs. He will be a great friend, always ready to help you hang your backpack or put the blocks away. And my Aiden? He gives the best hugs, hands down.
Get to know him. That's all I ask. And when you do, you will understand - Aiden is just like you...only different.
Hope you all have a wonderful year!
Love, Aiden's mommy
Introducing apertOWL
I started this blog to provide info about Aiden's condition, updates about his surgeries and recoveries and to show everyone that in spite of it all? We were going to be okay. Life was going to be different than what we expected. But okay.
I wish someone was there to tell me just how fulfilling and wonderful our lives would be.
Over the years, I began receiving emails from families across the United States who happened upon More Skees Please as they were doing research about Apert syndrome. Either they had a child who was just diagnosed or someone they knew did. Aunts, moms, grandparents - they'd email and say that this site gave them hope. That they finally felt like they could breathe again since the first time they heard the words Apert syndrome.
All because of Aiden.
The more emails and messages I got from other families, the more I knew that others were seeking a positive outlook just as we hoped to find amid our despair in those first few weeks. With every family that reached out to me the desire grew to create something more significant than my family blog.
Chris and Kerry Lynch live in Chicago and have a daughter with Apert syndrome. They found our blog when Mary Cate was a few months old and from the moment we first connected it was clear that they too were going to share the same positive outlook as us. Together with the Lynch's, the idea for apertOWL grew.
Our mission is to be a beacon of hope for families affected by Apert syndrome by providing support, resources and inspiration throughout their journey.
We have a million ideas - everything from becoming a strong online presence with accurate information to special ways to show support for these amazing kids...and so. much. more.
And apertOWL will not only benefit those who have a child with Apert syndrome. There will also be resources for family members, friends, and medical professionals as well!
The plan is to "officially" launch in September of this year. But in the meantime, we are building the apertOWL community on Facebook (already more than 1500 and going strong!) and we have a teaser page up and running at www.apertowl.org with a progress bar showing how close we are to launching the full site.
We would love for you to help get the word out - so PLEASE like apertOWL on Facebook and share with your friends and family. Everyone can benefit from learning about Apert syndrome even if it doesn't touch your life directly. Empowering the general public with accurate information will help ensure that kids (and adults) living with this condition get the support and acceptance they deserve!
PS -- The final part in my Love Story series will be coming, I promise! But I was too excited to share this first :) If you missed it, you can read part 1 here and part 2 here.
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!
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.
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!
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