A Long Post About A Short Phone Call

Let me set the scene. Mikey and Gavin are gone with Dennis to a scout engagement with a hockey game to follow, Sean is sleeping and Ethan is happily entertained in the house. It's a pretty unique moment in time.

Although I usually go to every stinkin' things the boys do spectate most activities, I decided that I would stay home, clean out my garden, do some work in the yard, etc. So, with this knowledge I start to plan the next several hours. I should have known better. 

The phone rings and it's Dennis with a very simple request, 'can you please bring Mikey's hockey pants here, he forgot them.' Even as I type it, it sounds so simple. Almost nothing around here is simple. I ask what time it is and what time he needs the pants. I have 45 minutes to get hockey pants 5 minutes away.

Here's why it's not easy. 

Sean is asleep and waking him results in at least 20 minutes of truly pathetic crying and I pray that he will magically wake up before I have to resort to waking him.

I realize that if I drive Sean and Ethan to the park where the scouting event is, they will figure out it is an Ice Cream Social and will want stay and have ice cream - understandably. But I now have a dirt-streaked face and arms, pants that are cruddy, and my hands and nails look like I am a heavy machine operator. My hair is greasy and I stink. I know that I will have to get out of the car and know that I am going to have to clean myself up.

I inform Ethan that we need to bring Mikey his hockey pants and he informs me that he does not want to go by throwing a couple of empty DS Game boxes at me. Remember, one of Ethan's super-powers is his unrelenting negativity. I told him to quit the crap informed him that it was totally unacceptable to do that and to go get ready. He said no. 

Thank God, Sean woke up, but was no happier to hear that we were leaving the house as I had vehemently promised that he could play Wii as soon as he woke up. He screamed at me that I had lied to him let me know how disappointed he was. Please, Sean, get a shirt and some shoes. He said no.

Time is ticking and we are now down to 20 minutes. I raise my voice and plead with them to just get in the car. Then I realize that I have not yet located the pants and I could have just as easily left without them. Then, I turn to bribery. I told the two of them that if they would just get in the car, there would be ice cream. It had only a modest effect on them. But as I was putting the finishing touches on covering up just how dirty I was and locating the pants, I realized that they were waiting for me in the car. As I grab my keys and walk out the door I see that Sean is running around the back of our rental car (remember, we don't have our van) because his car seat as been relocated to Dennis' truck for my use. SH%&, D*&M, CR*P. Uh-oh. 

I call Dennis to tell him I don't have a car seat for Sean and he says, 'well, then, never mind, I'll try to get there.' I tell Ethan and Sean that we don't need to go after all and they both throw their own particular brand of temper tantrum in response to having their ice cream bribe rescinded. Clock is still ticking. 

I quickly form a plan to beg a car seat off of my neighbor and it works! I put the car seat in and away we go. I back out, make a left and proceed down our street. Then I call Dennis and ask him where the ice cream social is being held! Armed with all the info I need, and even the pants, I make it to our destination. Ethan had no socks (and that is just a bad look for him) Sean had no shoes and I was not pulling of my pseudo-clean routine too well.

Because I was already at the venue where the hockey game was, I had got to stay for that too. So much for my plans and so much for 'easy'.

“The pessimist sees difficulty in every opportunity.
The optimist sees the opportunity in every difficulty.”
— Winston Churchill

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



 



A Date With Ethan

 I don't often have 'just' Ethan with me, but after this great night, I aim to remedy that. I dropped Gavin, Mikey and Sean off at a local vacation bible school (fun for all!) and because Dennis had something else he needed to do, I had 2 hours to spend with Ethan. I offered him a couple games of bowling and he accepted!

Bowling is one of Ethan's 'things'. He's got a ball and his own shoes, he knows the system and he is comfortable at the bowling alley. He even likes the food. Ok, he especially likes the food. 

It was very nice having all my attention on Ethan. There was definately a different dynamic with the ability to have casual conversation without juggling the other boys. Ethan was clearly more relaxed and he was much more conversational. There are times at home that I grab a few moments to ask him about school and his friends, but it is usually met with some sort of fresh retort. You know, like ''You're old mom!"

In the bowling alley he was really happy and funny. He was chatty and pleasant. Clearly a change of pace. We hi-fived for spares and strikes and I was boo-ed for gutter balls. After Ethan's gutter balls he said 'No matter!' Of course not. 

He talked me into nachos and a Pepsi - who could resist such a charmer? I beat him, but he said I didn't. I showed him the score - he still said "No matter!" I guess it really didn't. I am still hoping for second date :)

June Recap

Oh, June, really?!? I mean, what happened? You were here one minute and gone the next. For some reason the transition from June to July always comes so unexpectedly for me. 1/2 of the month is always sucked up by the end of school for Ethan and other sundry activities. I feel that June is like an introduction - 'look, summer fun is on the way' and then BAM - it's July.

Thanks anyway, June for...

Strawberry picking at Alstede Farms

A Citizenship Award for a dressed-up Ethan

A Troop meeting for Gavin (the first I've seen him as a Boy Scout)

Can you find him?

The end to our weekly homeschool playdate

A trip to Cabela's (that I'd rather forget!)

A stop at Crystal Cave (that went markedly better)

A hockey team pool party (complete with blow up hockey sticks)

Marshmallows roasted with friends

A Patriot's baseball game with fireworks

June was lovely. Now I hear July whispering, "I won't be here long, just 31 fleeting days of heat and happy memories, use them wisely!"

There are still more 'to do' items than 'done' on our list - Bring it on July!

17 Things About Our 17 Year Old

1. Ethan was born on June 24, 1995 (the day the Devils won their first Stanely Cup).

2. He generally eats 4 foods. There are rare exceptions.

3. Even though he eats 4 foods, he LOVES to eat them in restaraunts.

4. Ethan likes to watch Spongebob for exactly the amount of time it takes him to eat a snack - he then promptly shuts off the show, even in the middle, and even if someone else is watching.

5. Ethan used to shun homemade chocolate chip cookies in favor of Chips Ahoy brand, even when I hid them in the same wrapper.

6. He 'auditioned' for the part of a newborn baby with Down syndrome for The Guiding Light.

7. Ethan is bald because he has Alopecia Universalis. He likes being bald very much.

8. Ethan owns hundreds of matchbox cars, and enjoys playing with them.

9. Ethan can color for several hours at a time.

10. Ethan has been recently begun carrying a 'man bag' - you should see the contents!

11. Ethan utilizes several terms of affection for people in his environment - 'old man', 'poopy hair', 'meany mom', etc. He *thinks* he is hysterical.

12. Between birth and around age 7, Ethan was critically and chronically sick. He now rarely gets sick.

13. Ethan LOVES being a spectator and sporting events - especially the Devils. He enjoys boxing, baseball, basketball, and car racing.

14. Ethan is an absolute book fanatic. He keeps close tabs on what he owns, likes arranging them in ways that make sense to him, and brings his favorites everywhere he goes.

15. As a little child, Ethan broke or figured out every baby lock we could get our hands on, climbed babygates (even when I stacked them two high) and shredded three 'tents' meant to keep kids in their cribs.

16. Between the ages of 2 and 10 Ethan slept very little - sometimes staying up all night - sometimes several days at a time. He is now usually the first person to head to bed.

17. Ethan is interesting, funny, a good brother, an excellent student, and I am proud to be his mother. He is loved deeply by his family and I am happy to wish him a very happy 17th birthday. It will be celebrated with yet another bowling party.

Happy Birthday, Ethan!

Read more about Ethan here.

When Ethan's Home

Ethan loves school. He likes the structure and the predictability of the bus coming, his morning activities and the school schedule.  He likes that Art is on Tuesdays and that his schedule is placed into neat little boxes on a paper. It makes sense to him.

What he does not like is the willy-nilly nature of lazy summer days. To say that he doesn't like it is one thing. The truth is, it's not just that he doesn't like it, the nature of his disabilities make the plethora of activities occurring at unpredictable times an anxiety producing affair. Transitions of any kind and his oppositional nature make moving from activity to activity a very difficult proposition - yes, even if it is something he would like to do! When he says that he is interested in going to the library, it's all 'hurry up guys! he says he'll go, better get in the car before he changes his mind'.

It may sound like he's just a spoiled brat. But this genuine malfunction. The ways some people are terrified by heights or spiders, his opposition to moving from one activity to another causes a defense mechanism that is very difficult to overcome.

The way his attention spans functions is another great stumbling block. He either seems to settle in to something, like painting or cutting out snowflakes, or rearranging the living room, only to leave 3 minutes later. Next, he might over-focuses on an activity (like 'cleaning' his room) for an inordinatre amount of time and can not be swayed to consider another activity. When he decides that he is going to 'play ESPN' for a while, complete with an interview location, he leaves a wake of accoutrements all over the yard. Let's not talk about the show the neighbors must see when he decides he's Gandalf.

Having Ethan home from school is not difficult because Ethan is difficult - it's because there are 3 other boys involved in this cocktail of fun and frivolity. Ethan teases Sean and Sean feels the need to defend himself vehemently. I remind him that we just don't need to listen to him - but his response is still 'you're bald, E!' Nice. Ethan calls me old, and Sean insists I am not. Thank you, baby.

Ethan's other super-power is his extrodinary 'gift' of perseverance. This is not like regular-kid-bothering-you-for-something - trust me, I have three other kids for that. This is the ability to ask for an iced coffee and a cookie 4,300 times in two hours until I decide that it is actually something I want to do. I really need to pitch his skills to the people who run Guantanemo Bay, I really think he could make anyone do anything! A new type of torture, for sure.

We have a 'Summer To Do' board on the wall with all the things we'd like to see and do this summer. I have a mental catagory of things I'd like to take Ethan to, the things that Ethan would like, and things that will wait until E is safely and happily back to his days at Midland on July 5.

So today we are off on a roadtrip to Cabela's. The real excitement is wondering what could happen - not on the trip - but with Ethan :)

Central Park

Last year we visited Central Park for the first time. I knew when I left the park that there was so much more I wanted to see! So, with the weather conditions just right this weekend, we headed in again. The first time we entered the park at Columbus Circle and saw the sights there. This time we came in near the Metropolitan Museum of Art. I had visions of some hackeysack playing on the great lawn, bubble blowing at Strawberry Fields, and relaxing while eating some ice cream. What is the saying? 'The best laid plans.....'

Parking proved to be a problem although we had been lucky on another occassion - $53 later that was solved. We enjoyed our time at the Diana Ross Playground.

The huge rocks all around the park always slow us down because the kids want to summit each of them, but they provide such great photo ops.

Belvidere Castle was very cool and gave us aweseom views of the park, particularly Turtle Pond.

I enjoyed watching Gavin scale the castle wall and listening to the comments from onlookers!

We ambled through the Shakespeare Garden and saw the statues Romeo and Juliet and The Tempest.

It was right around this time that Ethan's incessant pleas for pizza and our 'differing parenting styles' got the best of us. I felt that Ethan was really getting to Dennis and he responded with frustration and a general amount of grumpyness. He felt that I was ignoring the whole situation and therefore making it harder for everyone. We had a full-fledged argument in the middle of the road in Central Park complete with swear words. I won't say who said them to protect the guilty.

Ethan has this persistence that has the qualities of a cinderblock wall. He will say the same thing over and over and over and over and over...and if you tell him to stop - he says it again. He's like a terrorist. When his demands aren't met, he takes the whole situation hostage. Which means, if you are trying to walk, he sits, if you are trying to sit, he walks, if you are trying to talk, he talks over you, if you want him to answer a question, well then, suddenly he's silent. He gets very 'stuck' in a loop of ideas that seem to be nearly impossible to shut off. You can either drop what your doing and fix his perceived dilemna or have a family meltdown in public.

We paid a little homage to John Lennon and enjoyed the sights and sounds of Strawberry Fields.

Then we left the park to get some pizza...because we had to.

It actually occurred to me leaving the house that morning that we have had a streak of successful, harmonious family outings and that I was owed a 'not-so-good' trip. Yes, it really works that way. So the trip only garners a '6' on the daytrip scale. Although the weather was a '10', we lost some points for the bickering - and I still have a whole lot of Central Park to see!

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.