Sunday, July 22, 2012

"I wonder what Kyle wants to do. If only he could tell us."

As you all know my son is 9 years old and has severe autism and is completely non verbal and has no true way of communicating. And as parents, my wife and I have been living this way for so long that we almost forget how strange it is that our kid can't communicate.

The reason this popped in my head today?

We were staying overnight at a Bed & Breakfast Hotel in a beach town this weekend. If you've been reading my Facebook page you've been reading a bit about this trip and seeing some pics.

So Saturday we had a GREAT day at the beach. My son Kyle had a great time, his autism service dog Paula was extremely helpful and all was right with the world.

Check out this morning, Sunday, is at 11am, but my wife likes to squeeze every last ounce out of every vacation so our plan was to get up early go into town to get some breakfast, check out and then head to the beach. The B&B we stayed at was right across the street from the beach and allows guests to shower and change there even after you've checked out so we would use their facilities before heading home Sunday evening (Sunday night if the wife had her way :-)

So Kyle wakes up Sunday around 7:30am in a fine mood. We go out to breakfast and all is going according to plan. Kyle's ok at the restataunt. Not great, but not terrible.

Anyway after breakfast as we are walking back to the boardwalk it dawns on us. The beach town we are staying in has an ultra religious history so on Sundays they don't allow anyone on the beach til 12:30pm. We look at our watches and it's 9:45am. Now we've got almost 3 hours to kill and we have to check out at 11am.

So as we are walking back to our room the wife begins to rattle off all our options and the pros and cons of each.

Such as.. "We can go to the beach one town over right now. Their beach is open already. But then we'd have to give up our great parking space in front of the hotel and we'll never get a spot later when we want to shower here."

She rattles off a few other options that I can't remember now and then I said "I wonder what Kyle wants to do." And she said "Yeah I know. Wouldn't it be awesome if he could tell us."

I haven't even had a thought like that in a long time. We spend so much time anticipating his wants and needs that we don't even realize how crazy it is that our kid can't tell us what he wants to do or what he wants to eat. We bend over backwards to give him what we think he wants, but who knows, maybe we're wrong sometimes or a lot of the times.

Funny end to that story. We were having that conversation as we were entering the room. And in his own way Kyle answered the question "what do you want to do?"


He proceeded to curl into a ball on the bed and almost took a 10am nap. Basically he was content and THRILLED to stay in the room, jump on the bed, look at himself in the mirror, and watch Dora on his iPad. So that's what we did until checkout. Then from 11-12:30 we stayed on the B&Bs porch and ate some snacks and waited til 12:30pm when we could FINALLY get on the beach.

We had another one of those "I wish he could tell us" moments as we were leaving the beach at around 5pm. We're walking up to the boardwalk and mommy is holding Kyle and he starts crying. First time all weekend. First time in a pretty long while if memory serves.

Anyway he's crying and then she leads him to those outdoor showers to wash the sand off. And the crying intensifies a bit. And she's saying "The sand is probably bothering you. That's why we're washing it off. Help me out. The quicker we get the sand off, the better you'll feel, and the quicker we can leave."

He's still crying and I say "Maybe the sand's not the problem. I think maybe he doesn't want to leave."

We'll never know the answer to that one but the sand didn't bother him yesterday. I think he figured out from the day before that this shower means the end of the beach day. And he wanted to stay longer.

But we'll never know cuz he can't tell us. But whatever he was crying about he got over it quickly and was fine by the time we reached our hotel.

That's it. So there's a little vacation followup blog post and a quick post about how even after 9 years sometimes it dawns on me how strange it is to have a kid who can't communicate with you.

But this didn't ruin my weekend at all. We all had a GREAT time. Hope to come back and repeat it in a few weeks!

Over and out...

Tuesday, July 17, 2012

The Eulogy I Wrote For My Dad...

My father passed away on Saturday July 14, 2012 after a long, tough battle with Parkinson's Disease. This is the eulogy that I wrote and read at his funeral mass...

My dad was born on October 20, 1929...the exact same day that the stock market crashed and the Great Depression began. I don't know how that fits into my eulogy, but I always thought that was pretty interesting, so there you go.

So I spent days trying to think of exactly what to say and how to commerarte my dad's life. I did a lot of googling "how to write a eulogy". I was struggling with the theme of this speech... And then in speaking to lots of friends & family at the wake yesterday, I heard one sentence over and over and over.

"Your dad was such a gentleman."

Gentleman derived from the Latin word for gentle which is gignere and from the Proto-Germanic word for man.

The dictionary defines a gentleman as...

--A well-mannered and considerate man with high standards of proper behavior.

--A man regarded as having qualities of refinement associated with a good family

--A man who is cultured, courteous, and well-educated

I think that fits my dad to a tee. He might have resisted it sometimes, he might have wanted to be seen as a tough guy sometimes, but deep down he was a gentleman. He couldn't help it. It was in his DNA.

My dad was a gentleman through and through. And it infiltrated every aspect of his life, including his life as a teacher. And through his teaching he touched many lives along the way.

As a HS English teacher he gave out trophies for academic excellence so the nerds would feel as cool as the jocks.

As a principal, he was the first to have graduation ceremonies at Lincoln Center. I googled it and last year alone 12,000 students had HS & College graduation ceremonies there but his students were the first.

Nothing made him happier than when he'd run into an old student who had fond memories of him.

And we all know he taught in NYC Public Schools in Harlem. And we all remember lots of funny stories from there. But the man loved to teach. The politics and the bureaucratic stuff, not so much. But he loved to teach. When he retired from the NYC schools, he continued teaching for another 15 years and touched even more lives.

He taught a little college, he taught HS equivalncey courses to prisoners, heck I had an old HS friend tell me that he taught her CCD religion courses here at this church! I don't remember that at all!

And he did it all with a great sense of humor and humility. He was a gentleman.

And as a father, he was the same way. He was always very supportive and proud of everything my sister and I did, big or small. And he adored his grandson Kyle. When Kyle was younger my dad was content to watch him nap. Dad would pull up a chair and watch him sleep for hours. And during dad's time in the nursing home, a visit from Kyle would always add a HUGE sparkle to his eyes.

Now that I'm older there's so many of dad's personality traits that I wish I had more of, if that's grammatically correct. Some of the same things that I resisted or would make fun of when I was kid, I'm envious of now....

I'm envious of how personable he was. He was always comfortable talking to anybody in any situation about any topic. He'd make friends with the waiter or the patrons at another table within seconds of sitting down at a restaurant. He'd invite the Javohas Witnesses in to see a picture of his grandson.

I'm envious of how good a public speaker he was. If he was doing this eulogy I'm sure he wouldn't be as nervous as I am now. And if he was doing this eulogy he'd be speaking without a script, or with a few notes written on 3x5 index cards.

I'm envious of his sense of style. I never thought I'd say that, but it's true. Looking at lots of pictures over the past few days I realized how much of a player my dad was when he was younger. Did you see those old pictures yesterday? The man had swagger. If it wasn't for my wife dressing me I wouldn't look nearly this good.

Basically I'm envious of how much of a gentleman he was. How he was always a gracious host. And as my mom could tell you, he didn't always want to be hosting a party or a holiday at his house and there might be a bit of a battle right up until the guests arrived. But once you were in his house, heck once you were in his presence, he was always trying to make everyone feel comfortable.

And when the Parkinson's really slowed him over the past few years, and he would have good days and bad days and happy days and angry days, his gentlemanly ways would still shine through. One of his first requests when he got to the nursing home was for us to buy folding chairs so that all his guests would have chairs. And in his last few months when his speech wasn't great, my mom would bring him coffee & Stella Dora biscotti and without saying a word, he'd motion to us like "where's yours? I'm not going to eat alone."

So the last couple of days we've been celebrating my dad. And my dad would've loved it. Richie said yesterday at the wake "who's gonna make me laugh at wakes now?" because my dad would always be in the corner of a wake bending someone's ear with some funny story like the time he almost got arrested in Puerto Rico for "accidentally" driving on an airport runway. And between the afternoon & evening wake sessions we had some people over my house for dinner and as Aunt Jo said my dad would've been in his glory with all his family around, especially when the conversation was about Italian dialects.

So let me wrap it up by saying let's continue to celebrate the man, the gentleman, and remember him with everything we do.

Thank you.

Saturday, July 7, 2012

Seizures, EEGs, Meds & Why I'm Not A Big Fan Of Neurologists...

Many have asked how Kyle's doing on his new anti-seizure med. Have we seen any more seizures.

So here's the long story...

So, as many of you know Kyle had a bunch of seizures in mid-May. We spent a couple of days in the hospital. You can read more about that HERE.

While in the hospital they did some tests and an EEG and they saw some complex partial seizures (what I call the big seizures) and some silent / absence seizures (what I call the staring off into space / zoning out seizures).

They put us on an anti seizure medicine (Trileptal 300mg x twice a day) and sent us on our way.

We were instructed to

Friday, July 6, 2012

My Dad's Serious Medical Issues & Some Tough Decisions We Are Facing

Friday July 6, 2012 -- 4:34pm. I just got home from the hospital where I was visiting my dad in the ICU

He has been pretty much out of it for a few weeks now.

Kyle and the wife are at an autism friend's bd party.

So, since I have some time I thought I'd write a bit about my dad and what he and we have been dealing with these past 2+ years...

My dad is 82 years old and has advanced Parkinson's disease. I wrote a couple of other posts about Parkinson's that you can read HERE and HERE

2 years ago we had to make the difficult decision

Thursday, July 5, 2012

My Son w/ Severe Autism Is Happy. Isn't That The Most Important Thing?

(originally written & published on July 5, 2012)

You all know I'm not a big fan of autism. That's been well established.

I already wrote about how I don't think it's a gift from god. (you can read that HERE)

I wrote about how, in my opinion, the autism parents who say they wouldn't change their kid if they could / take away his autism are a bit delusional. (you can read that HERE and HERE)

And I go thru stretches where I have MAJOR "grass is greener on the other side" syndrome. I wrote about that HERE.

And part of me is going thru a stretch like that right now. Part of it I think is I'm reading the book by Carly Fleischmann's dad.  (If you don't know who Carly is you can learn more about her HERE)

And I'm reading it getting envious of (a) the resources and money that they had at their disposal and (b) that ABA worked for them and that even before her "typing" breakthrough she was making small steady progress and (c) of course I'm envious of how she can type and communicate her wants, needs, and desires.

As many of you know my 9 year old son Kyle has not made much forward progress (academically & developmentally) in years. I say on here quite often that he has the receptive and expressive language of an 18 month old and he's been stuck their for years.

So I read about Carly and I read about some of your kids and some of the progress that they are making and yes I sometimes get jealous and envious.

And today I was driving to work and I drove past a school where they were unloading teenagers in wheelchairs off a van and into the school. And part of me felt


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