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Posts Tagged ‘special needs blog NYC’

Top Ten: Reasons I Dread James’s Annual Physical

Before your automatic response to this is, “change doctors,” let me just start by saying that we love, love, love our pediatrician and a handful of nurses at this office or we’d never go back here. Ever, ever again. Secondly, many of the reasons on this painfully long list would exist no matter where we went.

It’s after days like this I realize that the study done comparing the stress levels of special needs mothers to combat soldiers is completely accurate (though I certainly hope the 9-12 years off my life isn’t). Here’s how the nearly 4 hours spent in James’s physical went down today:

1. We wait over an hour to be seen, while James asks every five minutes if he is going to get a shot. My reply, I don’t know, isn’t exactly the truth but I can’t bear to start the meltdown quite so early.

2. The nurse takes James back to get his height and weight and pulls out a blood pressure cuff. The panic button has been hit and James starts to cry, shouting “No! Take that away! Nonononono!” I casually whisper to the nurse, “If you want to get through the rest of this exam you should probably not pick this battle – it only gets worse from here.”

3. She puts away the cuff and pulls out the headset for the hearing test. I am unprepared for the vehemence of James’s reaction to this one. The “nononos” start up again as James frantically pushes the headset out of the nurse’s hands. She looks frustrated, but says, “I’m going to put, ‘unable to complete’ on the chart.” “Good idea,” I say encouragingly. “What’s next?”

4. We get through the eye exam relatively quickly and wait for 20 more minutes in a new waiting room. James watches Dr. Oz  and breakfast battles.

5. Once we are finally called back I allow myself to relax a little while I catch up with the doctor (did I mention we love his doctor?). Until he mentions that James hasn’t grown at all this year. Not even half an inch. With James’s severely advanced bone age, there has always been a slight concern that he might stop growing before he hits puberty and go from the tallest kid to the shortest man in no time. After many years of testing and worrying over nothing, I had kind of shelved this one. Darn it. The doctor expresses more concern than usual and suggests getting new tests done before deciding on a “course of action.” Good thing I have a few weeks in between the move and the baby to figure all of this out.

6. We make it through the rest of the physical easily, until the doctor can’t find James’s second testicle. Seriously? It takes a very uncomfortable 15 minutes to bring it back down from wherever it was hiding. I’m sure you can guess how James liked that part.

7. We’re done. Oh wait, we need blood drawn and a tetanus booster. James starts to lose it upon hearing that there will be shots, but it’s the additional 20 minute wait for the nurses that provides him with the time to properly build the anticipation.

8. James’s reaction to the blood draw, while always unpleasant, is borderline crazy today. I run through all of the usual tricks – video games, ordering Chinese for dinner, thinly veiled threats – to no avail. James responds by offering to take another eye test or just a “bandaid with no shot!” I finally grab James by the arm to lead him to the chair and am slapped, punched and kicked in retaliation. Hmm, this is new. I let go, allowing James to assume the fetal position in a corner, shaking like a leaf and screaming. Lots of new today. After a quick huddle, I give the go ahead and the nurse calls for reinforcements.

9. It eventually takes 4 adults to carry my 97-pound child over to a table, unfold him and pin him down for his blood work. The first needle goes in and James goes crazy. They can’t find a vein and pull the needle out. “Are we done?” James asks hopefully. “Almost” sends him back into a crazed frenzy to get away. Twenty minutes (and several more sticks) later he has given up and lays on the table, complacent, quietly crying and completely pathetic looking. While the hysteria doesn’t earn him many sympathy points, it’s much more heartbreaking to see him like this. They finally find a viable vein in the hand. Afterward, James politely declines stickers, coloring books and lollipops.

10. There’s just the shot left. The nurse assures me that the next nurse will be in shortly to get this done to prevent more time for anxiety. I explain to James that there is one more thing and he’s all done, and it will be very quick. He makes no move to get up from the exam table, simply laying there in a daze. 10 minutes pass and I leave him to investigate, where I find the “next nurse” casually talking to another woman in the hallway. “Excuse me,” I interrupt. “My son needs to have one more shot. We’ve been here for over 3 hours – he has special needs and is very upset, and I’m hoping to avoid any more waiting time because he’s working himself up into a panic again.” “I’m just one person and I’m very busy,” the nurse replies, and goes back to her conversation about HPV shots and hypothetical teenage girls. I storm off and wait 10 more minutes before going back into the hallway to stare her down. She glances up and sees me. I don’t move – I continue to stare at her like I would at one of my toddlers if they were behaving poorly. She says something to the woman about “not being able to chat because she has demanding patients” and comes to give James his booster. It takes 3 seconds and he’s done.

While walking out of the office James asks if he’s earned Chinese food. “Are you kid-” I start. The first nurse overhears him and says, “You sure did! You were very brave in there.”

What the hell – we could both use a little lo mein tonight.

 

(Some) Special Needs Events Around NYC August/September 2012

Sorry, I’ve fallen a bit behind on posting great events like these this summer. Here are some of the unique meetings, workshops, events and classes being offered through September for special needs children and caregivers. And don’t forget to check Upcoming Events for social meetups of The Foorce.

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8/15/12, 10:00AM

How to Seek and Maintain Accessible Housing

UCP, 1770 Stillwell Ave,1st floor, Bronx

718-436-7979 ext 704, familyconnect@ucpnyc.org

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8/16/12, 10:00AM

Getting Your Child To and From School: The Ins and Outs of School Transportation

Central Library, 10 Grand Army Plaza, Brooklyn

718 – 998-3000

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8/17/12, all day events 

Surfers’ Environmental Alliance’s 6th Annual: SEAPaddle NYC Event and White Water Evening for Autism

http://www.seapaddlenyc.org/2012-seapaddle-nyc-and-elite-race

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8/23/12, 10:00-12:30PM  

Sexuality Education: Why it Matters and Where to Start

YAI,460 West 34th St., 11th floor, Manhattan

YAI LINK 212-273-6182 or toll free 1-866-2-YAILINK

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8/30/12, 10:00AM  

Yoga and Relaxation

YAI,460 West 34th St., 11th floor, Manhattan

YAI LINK 212-273-6182 or toll free 1-866-2-YAILINK

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9/8/12, 7:30PM

My Time Inc. Wine and Cheese

1312 E 84th St, Brooklyn

mytimeinc.org

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9/12/12, 10:00-12:30PM

What to do if You’re Just Getting Started- Accessing Services

YAI, 460 West 34th St., 11th floor, Manhattan

YAI LINK 212-273-6182 or toll free 1-866-2-YAILINK

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9/15/12, 3:00-4:00PM

Dance FUNdamentals – ages 11-17

Mark Morris Dance Studios, Brooklyn

runs through 11/3/12  every Saturday, $130

http://www.extremekidsandcrew.org

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9/22/12, 10:00AM

FINDING NEMO

AMC SFF Films

http://www.amctheatres.com/programs/sensory-friendly-films

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9/22/12, 12:00PM

18th Annual NYC Buddy Walk in Central Park

http://www.buddywalk.org

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9/30/12, 1:00PM

Autism Friendly performance of “The Lion King”

Minskoff Theater, 200 W 45th St, Manhattan

http://www.tdf.org/thelionking (get on the waitlist in case there are cancellations)

Monday Minute: James Sees Pablo Escobar

Just when you thought it couldn’t get any weirder (or more embarrassing) James manages to top himself. It’s like he knows I’m looking for material on Mondays or something.

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James is in italics, my responses are in bold italics.

(riding the crowded bus home from Harlem with all 3 kids earlier today)

Mom, Pablo Escobar is inappropriate.

What?

You know that guy, Pablo Escobar.

(cautiously) Who is Pablo Escobar?

You know, that bad man with the guns.

What? Where?

He’s only for adults, but he’s not appropriate for kids.

What are you talking about?

That brownish man – he has a lot of guns and was looking at me.

Not so loud! How do you know his name?

His name was on his gun.

Where did you see his gun?

He’s coming here in 2012. But us kids can’t see him because he’s not good.

James…he’s dead.

Oh.

5 minutes later

(excitedly) There he is – Mom, look – it’s Pablo Escobar!

At this point half the bus looks out the window, just in time to see a Pablo Escobar movie poster advertising the 2012 release date, and yes, there is a gun-laden man featured dead center.

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We were definitely the crazy people on the bus today.

Monday Minute: I Have No Money

July 17, 2012 3 comments

I know, I know, it’s no longer Monday, but I didn’t get home from my epic subway journey after tennis until bedtime, let alone the dinner I was now supposed to throw together. Needless to say, the kids and I raced each other to bed last night and they only won by a hair. But my nearly 4 hours on the subway yesterday provided me with more than a sore back and headache – by now you can only imagine how much material James provided for the Monday Minute in that length of time. This conversation was by far a crowd favorite, though.

James is in italics, my responses are in bold.

This particular moment started with a woman coming into our subway car to announce that she was homeless, hungry and needed money, however little we could spare. She projected very well so it was impossible for my children not to notice her. As she passed subway passengers one by one, pleading loudly, James asked (also loudly):

Do you have any money to give that lady? (as if it wasn’t awkward enough)

Not this time James – I don’t have any cash on me.

Oh right, not even for the vending machine after tennis today.

Nope, not even spare change today bud. Sorry.

Why don’t you have any cash?

Because I forgot to get some from Dad’s wallet this morning. All I have are my cards.

Why is all the cash in Dad’s wallet?

Because he gets it from work.

Does Dad take care of all the money? (the man next to James smirks)

Well, Dad makes all of the money but I help take care of it by paying the bills and saving it.

But Dad makes all of the money?

Yes.

And he keeps it all in his wallet?

And the bank.

But you don’t have to work like Dad so you don’t have any money? (man next to James snickers out loud)

No James, we share the money. I work in a different way taking care of all you kids.

I can’t believe he has all the money in his wallet and you have no money! We couldn’t even go to the vending machine today. (I am now feeling laughed at on all sides of the subway car, though James is dead serious.)

I’ll be sure not to forget next time. (very, very sure)

Maybe he will share some of it tomorrow.

James, he will share money with me anytime, I just forgot this morning.

Do you think maybe you should work so you can get some of your own money?

I think maybe I will just continue to live this life of luxury and take some more out of Dad’s wallet tomorrow morning.

Good idea! And Dad can take some more from work.

Something like that, James.

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Interestingly enough, the homeless woman did not pause to ask me for change.

Top Ten: Reasons My Dad Is Cool (by James)

Who better to guest post about special needs dads on this blog than the J-man himself? As a non-stop talker on any walk over 10 minutes long, James has come up with many a “Top Ten” list in his time. Last weekend he started a Top Ten list of things that happen to a car when it crashes, so I gently offered an alternative list in preparation of Father’s Day. “How about a top ten list about dad?” I asked. “Sure,” James readily agreed. “How about top ten reasons my dad is cool?” “How about Top Ten things you like to do with dad, or reasons you love dad?” “Nah, top ten reasons dad is cool.”

So here it is, dictated by James with my own occasional sidebar in italics. I have to admit, I was impressed with some of the things he came up with. Who said this kid can’t pay attention (besides me)?

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Top Ten Reasons My Dad Is Cool

by James Rejack

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1. He’s nice and goes to work all the time for our family. He takes the subway in a cool suit with cool hair.

2. He plays catch with me. He coaches my baseball team – you know, the Grizzlies.

3. He makes snacks for me like ramen noodles.

4. He takes me for long bike rides on the tandem bike.

5. We have a lot of fun walking to school together (really? hmmm…) He gives me a hug and kiss and heads to work and I go to school.

6. I like his hairy beard. (What beard?) His beard at the beach. (Ohhhhhh, his vacation beard.)

7. He reads me books like The Sneetches.

8. He drives us to places in cool cars. Last time I got to sit up front in a blue pickup truck.

9. He takes me on good vacations like Pennsylvania. Remember, Amish Country and the farm? (Really? Out of all of our vacations that’s your favorite?)

10. He likes to laugh a lot.

Monday Minute: Where Do Trains Go When They Get Old?

I witnessed this sweet, yet odd (as if it would be anything else), conversation between James and Margaret on the LIRR today.

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James is in italics, Margaret is in bold.

Look, James, there’s a ton of trains out there!

Wow, cool!

Why are they all out there like that?

That’s a train yard.

 A train yard?

Yeah, it’s kind of like a nursing home for trains.

Oh.

When trains stop working or when they get old they go to train yards.

Those trains are taking a nap.

Yeah, old trains need to take a nap so they can get back on the job.

Have a good nap, trains!

Bye train yard!

Do You Say I Love You Enough To Your Children?

“May Is For Mothers” is minutes from being over and I want to make sure I get one last post in.

I had 2 precious hours alone on Mother’s Day this year,which is no small feat. When I mentioned this to a friend her response was, “Oh, I’d feel bad if I left my kids on a day I was supposed to be celebrating motherhood.” Hmm. Who said Mother’s Day was supposed to be about guilt – don’t we have enough of that day-to-day? With two toddlers and a special needs child time alone is something incredibly rare (seriously, think a couple of hours every few months), and being pregnant, alone time is only going to become more scarce. I like to think of my hours away as “time to recharge so I can be a happy mom again,” rather than “escaping my kids on Mother’s Day.”

Then this past week a mom confessed to me that she didn’t feel she said “I love you” enough to her kids because she was often too stressed out dealing with the “everyday crap” to think about “being nice.” I thought about that long after we parted ways, and if I had been a little quicker on my feet I would’ve said this to her:

As the mother of a special needs child who says “I love you” no less than 50 times per day (no exaggeration) I sometimes feel guilty for not saying it back every time, or worse yet telling him “okay, that’s enough, let’s talk about something different.”  And there are definitely days where the only time I say “I love you” to my other kids is when I’m tucking them in at bedtime. I know there are people who say I love you every time they hang up the phone or leave a room but I was not brought up in one of those families. That’s not to say I didn’t feel loved or know my parents loved me. But love is demonstrated in many ways, and often the exhibit of love is just as powerful, if not more so, than words can be.

So Mother’s Day has come and gone, but instead of worrying about all of the ways we fall short in expressing our joy with being mothers or our love for our children, let’s resolve to spend the next 11 months (or at least the next few moments) counting the many ways in which our love for our children is evident, if less obvious. Have I missed opportunities to say the words “I love you” to my children? Perhaps. But when they look back they will see that my love has surrounded them constantly from the moment they were born. And it may not be until they have children of their own that they realize I have said “I love you so much” to each of them at least a thousand times per day for their whole lives long.

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To my children, I love you. I love you so much that I always give you the better piece of fruit.

I love you so much that I lay awake at night worrying about how I’m going to fill your prescription to have enough meds to get us through our vacation.

I love you so much that I once read “Where The Wild Things Are” every night for 3 months straight, and have done the same for each of you with countless stories.

I love you so much that I let you help me put the laundry away, even though it means I’m going to have to put it away all over again when you’re done.

I love you so much that I have practically torn your arm (and mine) out of the socket trying to keep you from getting hit by a car.

I love you so much that “ten more pushes” on the swing is really a rough estimate before you have to get off.

I love you so much that you always have second helpings before I do.

I love you so much that I toured 13 schools before finding one that is “good enough.”

I love you so much that I let you play in the sprinklers and sandbox right after you took a bath (there’s never a good time for a bath).

I love you so much that I screamed at you for getting lost because I didn’t think you were scared enough not to get lost again.

I love you so much that I’m always the last one to bed and first one up, just to make sure you have everything you need for a good day.

I love you so much that I drop everything and get back on the subway with the babies to bring another change of clothes to school only to find out it was a false alarm (that was a good one).

I love you so much that you think “I don’t work like dad does,” and I don’t correct you.

I love you so much that I know who likes extra peanut butter, who likes no crusts and who would rather have “just jelly.”

I love you so much that I will sing “Wheels On The Bus” on a loop until we get to the front of the line, just to make sure you’re not bored.

I love you so much that I count to ten (most of the time) instead of yelling back at you when you wake up every morning shouting “bully!” at me.

I love you so much that our “go to” pandora station is Sesame Street instead of, I don’t know, anything else.

I love you so much that I have embarrassed myself, lost my temper or cried my eyes out on your behalf in front of more teachers, doctors, bullies, parents and complete strangers than I care to recall.

I love you so much that I stand there and eat a peach and watch you guys lick out the brownie bowl (now that is love).

I love you so much that I host playdates with little brats because I want you to have a “friend” over once in a while, even if they require a hawk’s eye the entire visit.

I love you so much that I gave up a career I loved because the people I loved more needed me more.

I love you so much that I sat in the hospital every agonizing minute of every agonizing surgery, even though I wanted to run out of that place screaming.

I love you so much that I trade my soft, fresh turkey sandwich for your peanut butter and jelly crusts.

I love you so much that I stop cleaning up dinner to play “roll the baseball across the table, enthusiastically” with you, even though it’s really not my favorite game.

I love you so much that I let you read “Hop On Pop” to me at bedtime (after I read it to you) even though it takes 15 times longer.

I love you so much that I don’t even mind you probably won’t remember any of these things I did for you, just as long as you never feel like you have been anything less than loved with all that I have and I am.

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How do you say I love you to your children? I’d love to see this list continued in the comments section!

Top Ten: Careers Motherhood Has Prepared Me For

1. Chef: Living in NYC, ordering out 6 times a week just wouldn’t fit the bill, literally and figuratively. You know when my kids are asking me to make sushi and when I say “no,” their response is “okay, lasagna,” that I’ve cooked myself into a corner. I could shame even the busiest chef with my mad skills in the kitchen – how many of them can cook for a party of 5 with a baby on one hip and another baby “helping out?”

2. Nurse: I clean up bodily fluids of all kinds, bandage injuries, ice bumps and bruises, and dole out medications twice daily. Oh, and I give magical kisses that cure scrapes big and small.

3. Cinderella I started this one off as “Maid” but quickly changed it to Cinderella as the vision of the young girl scurrying around the house balancing food in one arm and laundry in the other while people shouted her name from various rooms shot into my mind. I don’t know too many maids around here that would be serving breakfast while tackling long lists of chores each morning (if you do send me their number). And, maybe I’m still secretly hoping for a fairy godmother.

4. Secretary: Those of you who have had the pleasure of seeing my calendar, or worse yet my email inbox know that this is no joke. Scheduling appointments, sending out correspondence, calling back teachers, doctors and delivery men are all part of the daily grind – and don’t forget the baby on the hip part.

5. Plumber: When I mentioned this jobs post I was going to do, my sister and I got a little giggly at this one. Armed with 4 Stop&Shop bags and my bare hands I can fix almost any plumbing issue, enough said (see my past post on mega-colon if you really need more info).

6. Travel Agent: It’s not just vacations anymore. When discussing my husband’s future trip to his brother’s graduation, he asked, “Did you book me some kind of way to get there?” I did, and not only saved us some cash in the process, but found the fastest trip available and worked it around his work schedule.

7. Financial Planner: Managing monthly bills, investing in IRAs, paying down student loans, taking vacations, budgeting in classes for the kids, date nights for us, medical bills, and don’t forget cash for the fruit stands – all while living in NYC. And still saving money. I would hire me.

8. Psychologist (though it doesn’t mean I couldn’t use one at the end of the day!): the day to day behavioral management of a disabled child with severe sensory issues, ASD and ADD versus two willful toddlers who compete with each other for everything and agree with me on nothing. Take your pick. Or take all 3 at once and get through the day in one piece. Do my kids count as references?

9. Event Planner: Just since we’ve moved here I’ve orchestrated and executed 2 baptisms, a first communion, a confirmation, 2 dozen meetings of  The Foorce, 7 birthday parties, 3 summers worth of special needs social group activities and half a dozen dinner parties. All with a baby on the hip, of course.

10. Storyteller: Every night I read the kids a story or two before bed. With inflection. And for the last 3 months without fail my 3 year old daughter then requests that I make up a spooky story about her and her brother and a witch and a ghost on Halloween. Every night. And even if just to save my own sanity, I come up with a slightly different spooky Halloween story about a witch, ghost, two toddlers and Halloween night each and every time. With inflection.

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What kind of jobs has motherhood prepared you for? I know I haven’t even scratched the surface – feel free to share your own thoughts in the comments section.