Otherwise Known As Ethan Crashes The Car

Like accidents do, it happened quickly and unexpectedly. I was the first to hear the impact. I knew immediately it was the sickening smack of a car. I heard the scraping and crunching of plastic and glass. I was standing and running when I heard more smashing and crashing. In my mind, I was rushing to render aid in what sounded to me to be a bad car accident just outside a relative's house. I took a route through the house calling attention to what was happening outside.

As I pulled the front door opened, I could make out that it was my car settled on the the lawn and smashed deeply into and onto a family members beauitful new car. The engine was revving as if someone continued to press down on the accelerator. Somebody was, and that somebody was Ethan.

I knew it in an instant, but I froze. Dennis pushed past me and ran toward the car. Ethan continued to rev the engine and Dennis was furiously pounding on the window in an attempt to get him to stop.  I could hear Dennis yelling. I waited inside, assuming that there were family members helping Dennis. As Dennis tells it, Ethan finally took his foot off the gas, put the car into 'park' and unlocked the doors. I remember wanting to make sure that our other boys did not go out of the house, as I was not sure in what condition Ethan would exit the car. My heart was racing and I could not catch my breath. I began praying to God that he was ok -- I almost got on my knees in that instant -- but ended up pacing and hyperventilating (and praying) instead.

Ethan emerged shaking and crying and completely terrified. He was pale and hung his head low. I don't know if I hugged him or touched him or what I did, but I know that seeing him sitting whole and unscathed on the couch was more than I could process in the moment. I think this was my first experinece with true shock. I could not stop crying and absorbing exactly what had just transpired in a matter or moments was hard.

 

There were explanations to the police officer and phone calls to the tow truck, more pacing and the asking of 'what-if'. What if the pristine Mercedes Benz did not stop him in his tracks? What if he made it onto the busy, main road ahead? What if someone had been walking down the road? What if....but he was safe and sound and so was everyone else. The thought completely overwhelmed me. It made the details of the police report, insurance phone calls and monetary expenses seem positively trivial. We could have been planning very different details. But we weren't.

 

We are so grateful for our family that helped us during this scary event. Ethan knew he had made a really bad choice, that his actions resulted in something serious. I believe that he is still processing what he did. We'll all work through it together.

 

As one of Dennis' aunts was sweeping up debris at the accident scene, she found something among the shards of broken glass. She walked toward me with a closed fist telling me to look at what she had found - a stirling silver, four leaf clover charm - a typical symbol of 'luck'. It did not belong to anyone we knew and there it was lying with the broken pieces. I don't believe in luck, but I do believe in signs. I can't say that I know all the messages delivered by this event - but I am thankful for what God did for us and still listening to what message He has in store for our family. I am listening.

This could have been a tragedy, instead it is an inconvenience. We've developed new skills and more wisdom - you're kids have to be alive for you to want to kill them! We woke this morning grateful to hear Ethan's laughing at his shows.

September Starts

September, for us, does not hold the same foreboding that it did when I was a kid or that it does for many families. Fortunately, ours is a little more relaxed. If you don't happen to find September daunting, hurray for you!

 

End of the Summer golf/boardwalk/rides/pizza night!

We are so grateful that The Midland School exists and provides exactly what Ethan needs and wants. He looks forward to going. He thrives on the structure and opportunities provided to him there. He likes his friends and likes his day to fall neatly into the boxes on his schedule. He wants his routine to be enjoyable - and to Ethan, that means predictable. Thank God Midland has a 'No Homework' policy - because our family does too!

 

Ethan's new 'LunchBlox' System - love it!

So we said 'goodbye' to Ethan on Wednesday as he happily ran to his bus!

 

Although the other boys are homeschooled, we continue to have a strong connection to the September 'start'. Their hockey league starts practices and scouts begins meeting again. Our homeschool playdate and cooperative start up again, as do classes at The Circus Place.

 

This year, we think they boys need a little more structure and a tighter routine for their day. Our boys have serious focus 'issues' - oh, where did they get that from?! Gavin, in particular was able to articulate that he often does not get done what he hopes to in a given day. Who hasn't experienced that? I wouldn't function without a list. We sat with the boys and talked about some things that they are interested in accomplishing. We discussed interests and desires, and how busy they want to be. We looked at what was 'scheduled', like existing classes, and started plugging in some blocks of time for them to accomplish other tasks.

 

This preschool has a 'shirts optional' policy - heck, it has a 'clothes optional' policy!

I expected some of their requests - like time for computer games and juggling, continuing on Khan Academy and time to read. Some things surprised me - like Mikey's request to learn about the United States and cursive. I was surprised that Gavin decided to take over teaching himself from The Story of World.  When Dennis and I presented them with lists and routines on paper I thought they might balk at first (turned out only I did), even though we were sensing they needed a little more support in their days. "Looks good!", they said. Hmmmmm, I guess there is a season for everything.

 

So here we are in September, with a new season about to emerge, in more ways than one.  I am not fond of fall or change or lots of structure. I am hoping we can find just the right balance for the season we are in.

 

"Not-Back-To-School-Day at Turtleback Zoo



 



Special Olympics - Ethan Carries The Torch

Ethan recently participated in our county's Special Olympics Track & Field Events. We had not participated in several years because it was always a difficult day for Ethan (and his brothers, oh, and us) with lots of waiting and lots of transitions. But when he came home from school asking to train and compete, who was I to say 'no'? Shortly before the event, he was asked to carry the torch around the track for the opening ceremonies. We were honored and excited!

Greeting friends.

 

Pictures for the iPod.

Aunt Meg.

 

Ready for opening ceremonies.

Two handsome guys.

The wait.

The hand off.

Go.

So serious.

Three amigos.

Softball throw.

Medals.

Soccer clinic.

Run, E, run.

More awards.



Thanks, Sandy, for this awesome photo of my boy. Not an easy shot to get.

"Let me win, but if I cannot win,

let me be brave in the attempt." 

~ Special Olympics Motto



Special thanks to The Midland School for their dedication in training their athletes and making the day so meaningful for them. Thank you for the opportunity to see Ethan have this experience.

Being Bald

It's inevitable. Unavoidable. Guaranteed. Anywhere I take Ethan, he is going to get stared at. We are going to get stared at. Yes, everywhere, all the time.

If you are used to how Ethan looks - good for you! If you don't find it that shocking - great. If you don't think it's a big deal. Think again.

It ranges from causual glances, double takes, stopping and standing, nudging a companion, teenagers that openly make jokes, little kids that point and stare, and grown adults who almost bump into things. There is not a trip to the store or the park or anywhere else for that matter that I can say there is not one or more 'staring' incident. My reactions vary from day to day, the severity of the infraction and how much I've already put up with that day. Of course, the younger the child, the more I can understand. Recently there were a few 7 or 8 year olds at a soccer field that were so persistant with their 'sightseeing' that I had to say, 'really guys, it's just a bald head.'

I suppose it's not just his bald head, but the distinct look of Down syndrome. He also draws quite a bit of attention with his somewhat loud, and somewhat gruff speech. We have a trifecta, folks!

Several times I have taken the opportunity to approach a group of teenagers and tell them how much it sucks - really sucks - that they would make fun of him so openly, and that they are old enough to know better, and that they better hope that they or any of their friends never get sick and lose their hair. I tell them to think about it. I don't know if they ever do, but it's a message I need to send.

I have had more than one mother who told their children to 'shut up' and pull them away quickly when they ask 'why does that boy have no hair?' Way to go moms, nothing like passing on your ignorance. In all honestly I have heard two moms give sweet, truthful answers - "I don't know, honey" and "I guess he just doesn't". Now, was that so hard?

It's the adults that I just can't get. Turning around multiple times and mentioning it to their husband or wife and believe it or not, once a mom pointed him out to her middle school son. I don't know if people feel invisible in crowded places, but I can easily read 'look at that kid over their' on their lips, with their heads tilted towards another's ear and a gesture in our direction.

I have shared words with a fair share of them. I want my other kids to know that it is ok to let people know that you see them. I have told people they can stop looking now, only to have them offended that I would address it. I have asked them if they know Ethan or did they want me to introduce them. No one has taken me up on that offer.

The converse side of this, is we have experienced our fair share of people being incredibly nice to our family. Once, Ethan was given a basketball jersey at a basketball game just because 'he should have this'. In an incredibly long line at the Empire State Building we were instantly picked out and told that 'kids like him don't have to wait' - which meant the rest of us didn't either! My boys were taken directly to the front of the line at Times Square Toys R Us to ride the infamous ferris wheel when the line was approximately two hours long. People have handed him extra ride tickets at the fair and we have received free ice cream cones on one occassion because 'those boys all deserve it'.

And they do. And baldness has it's benefits.

Ethan had normal hair until he was 6. He then developed alopecia universalis. It is an autoimmune disorder that causes his body to mistake his hair for 'enemy cells'. It affects slightly more people with Down syndrome than the general population. He has no eyebrows, eyelashes, or hair on his arms and legs - 'universalis' - universal. It does not affect his health in other way and for that we are grateful. Although there are some standard treatments that are questionably successful, Ethan has other health issues that make addressing it with any types of medications or therapies very undesirable. Ethan enjoys being bald (except for his daily sunscreening at my hands).

Oppositional Ethan

I love him. You know I do! But one of things that Ethan does that drives me out of my mind is say "No." He says it often, fevervently, persistently in a way that is truly epic. He makes a typical two year old look postively positive. The other half of the problem, is that he even does it for things that he wants. Yes, you heard me right.

I recall reading Stanley Turkecki's, The Difficult Child (hoping for some help) when Ethan was about 4. I looked at the checklist that helps you identify just 'how difficult' your child is (no, it was not encouraging). I remember thinking that the way the book was presenting negativity was just not as intense as what I was dealing with. His scale didn't come close to gauging the amount of opposition exhibited by my then, teeny, tiny son. In a particulary bad incident during that time, he had been caught in a several hour loop of tantruming. As a last ditch attempt to 'break' through the cycle, I called my mother, his beloved companion, to come and offer him a trip to McDonalds. She kept offering, and he kept screaming 'No!' although walking to the threshold of his room, only to stop and scream it again. His propensity for being oppositional is pathalogical.

I knew, even at the time, that is was anxiety and his inability to modulate his sensory experiences mixed with something that we've never quite put our finger on. Poor E. Poor us.

So here's how it goes. We find out about an activity, say tennis, that we need to register Ethan for. If we were to ask him if he would like to play, he most likey would answer - you got it - no. But we don't ask anymore. We register and hope for the best. I might put in on the calendar, or tell him that tennis starts in a few days, but he will just say - no, he's not going. He may continue to tell us that he is not participating in a given activty until it is time to leave. 95% of the time, just in the nick of time he says, "Ok, yes, let's go!!!" and with that, the happy boy packs his stuff and off he goes to tennis. Same with the school dance and bowling.

Very rarely, he protests to the point that the activity has passed, come and gone, and then we deal with tears that he wanted to go all along. I have attempted to persuade him about going somewhere, only to have him decide, around bedtime, that he would like to go.

You might be thinking that you know just the way to fix this. If we would just tell him that he needs to decide and that is his final decision.....blah, blah, blah. Ethan has another really cool super-power - persistence. If only he would use it for good and not evil. He can badger you (which is a really nice way of describing the torture of his nagging) for hours on end. I promise he can outlast The World's Most Patient Parent. By the way, that's not me.

As I am writing this, Dennis stopped home en route to Rita's Italian Ice and offered Ethan ice cream. He said no. Then he said yes.

He can make an easy task difficult and he can turn something that should be fun turn into an act of congress. Would I trade him for all the world? No.

Model with Down Syndrome

Recently, a friend's little boy was featured in Target and Nordstom's ads. He looked fantastic and it prompted lots of internet buzz in the Down Syndrome community with Noah's Dad posting this. Then he went on to be featured on NBC's Nightly News. I love seeing people with Down syndrome included in all types of media. It is validating for parents and brings awareness to the community at large. It is positive and encouraging.

It brings me back to a time before Ryan was modeling, when Ethan (and lots of other kids with DS) were modeling.

That's Ethan, under the fort in the sandbox.

We answered our first casting call when Ethan was just a few months old. Guiding Light was casting an infant with DS to play the part of a newborn to be born with DS on the show. They picked a beautiful baby girl, but Ethan was selected by NDSS to be the face of their campaign for the year. From there, we were referred to the photographer that shot all the ads for Toys R Us. Our first casting call was in NYC. Modeling was a lot of fun. It gave me something else to focus on with Ethan other than an endless steam of doctor's appointments and Early Intervention.

Ethan was featured in Toys R Us' 'Guide for Children with Disabilities', and both of these shots were featured in the regular, Sunday sale flyer.

One evening, we recieved a call to have Ethan in Connecticut the next morning for a shoot with Ames Department Store. "All of his hair fell out" I said. "Um, that won't work, uh...ok...thanks." In a matter of weeks, Ethan had lost all of his hair due to Alopecia Universalis.

It was a sad and scary time. After leukemia, thyroid disorder, and a myriad of other things were ruled out, we received a diagnosis of alopecia. After some local doctors attempted to treat it with irritants and steroids, the Professor of Pediatric Dermatology at NYU shared with me that if it were his child, using the medications he was already on for varying disorders, he would leave the hairloss alone and 'let it be'. That's exactly what we have done.

Alopecia has presented challenges that I could not have predicted. Ethan has no eyebrows and eyelashes. It causes constant eye irritation. You need your eyebrows and eyelashes. Little, tiny 'bushes' of hair grow on Ethan's head making it necessary for constant up keep to avoid the very bizarre look of these little 'crops' appearing. Sunscreening his head is a 9 month-a-year production, and very challenging on long beach days - Ethan hates hats.

Ethan is stared at frequently and ocassionally, openly made fun of. Don't think I've been quiet on that account. People's behavior is generally shameful and I am shameless. What has become such a non-issue to us, remains a stark and shocking look to other people. I have never seen him embarassed and he often chuckles at it.  The best part of the whole thing is that Ethan loves the attention (good and bad) that his head garners. 

Ethan continues to lead us on a winding, bumpy road. He may be bald, but he is *never* boring.

We Had Med Students for Dinner

On Monday evening, we opened our home to a new set of 'medical students'. We have been part of a seminar run by UMDNJ for over 10 years (on and off). The students are 3rd year students participating in a pediatric rotation during which they will receive training in treating patients who have disabilities. As part of the seminar, they are required to visit the home of a family raising at least one child with special needs.

I do this because I feel that it is so important for these soon-to-be doctors to cross the threshold from the clinical into the personal. I like them to see who we are, how we live, and what we need from the medical community. I hope that telling them the stories of the difficult beginning as well as what challenges we expect to face in the future will leave a lasting impression on them.

Three young men who we've never met before walked through our front door into our "you-get-what-you-get" environment. They walk in to video games and dinner prep and having to step over toys and dodge nerf bullets. During dinner, the guys ask lots of good questions. Did we know Ethan had Down syndrome before he was born? Who gave us the news and could it have been done better? What are all Ethan's diagnoses? What were the early years like? How do the boys interact? What do we hope for his future?

 I make sure they all have two big plates of chicken parm and I never tire of telling them that we need doctors who will listen, doctors who are human. I share with them some of our lowest points, personal things. I tell them that there were things that were and still are very hard. I tell them not be afraid to be optimistic and encouraging to new parents. I tell them that although they will be treating children during all types of difficult times and terrible illnesses, that raising children with special needs can be a gift.

I remember lots of our medical students over the years. I hope that they remember us and that it changes how they deal with another family who needs compassionate medical care or a family to whom they need to share difficult news with. I hope they will remember how much we love Ethan. 

Running Away to Join the Circus

Over the weekend, we visited the Grand Opening of The Circus Place in Hillsborough. They are teaching circus arts to children in a non-competitive environment. It was pointed out to me by a staff member that 'mistakes are the road to learning' and there is a cooperative effort as the kids work together. Nice, right?

Every staff member we came in contact with was patient and genuinely interested in giving the kids a taste of the equipment and skills that can be learned. My kids were inspired, wanting a tightrope in the yard and more juggling paraphenalia. The space is nice and new, and so is the equipment.

From years of having kids with a certain set of challenges, help from various professional therapists and voracious reading on the subjects, I could see so many benefits of the activities being offered here. From a sensory standpoint, most activities brought real awareness to where your body is in space. The hand-eye coordination that can be taught and developed is so important for solid function in everyday activities. I watched my kids very carefully and noticed that balance, core strength, coordination and focus were all addressed by the activities presented. Saying that the kids were engrossed and having fun is an understatement.

Ethan had an encounter with Craig Quat, the director of the program, that gave me chills. As far as I am concerned, he's a genius with extrodinary gifts and someone I want my boys around.

To understand what he was doing with Ethan, watch the video here.

To understand the kind of people we are talking about here, check out....

This is an exceptional group of people, I could feel it in the room. I am really excited about the prospect of my kids developing such interesting and productive skills. The boys want to know when they start.

Although I am generally opposed to 'school' - this one seems just perfect for us.

Ethan Surf's Revisited with Professional Pics

The original "surfing" post is here.

I am so excited to present...The Costello's....from a professional angle. I'd like to thank Anthony Trufolo for these great shots.

That last one is really epic! The following pictures were shot by Donna Green Photography. I am equally as excited to have such great, candid shots of our family.