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Top Ten: Ways My Kids Are More Special Than Yours (the easiest list yet)

September 27, 2012 Leave a comment

Even though only one of my kids has a true disability, in the most technical sense all of my children have “special needs.” And I don’t mean special in the “my-kids-are-so-much-more-special-than-yours” sense (despite the title). In fact, I’m counting on the fact that your kids are more special than mine in some ways, and that even you yourself have a special need or two.

Sometimes it’s just too darn easy to judge or lose patience with James for being weirrrr… I mean, particular about so many things (so, so many). But last night as I was talking to my mom about struggling with the particularities of another child of mine, it became startlingly clear that all of my kids were weirdos. Yep, big ol’ weirdos. And I have no idea where they get it from, because their father and I are just as normal and boring as two people could be.

So for a little fun, tonight’s Top Ten is another mystery edition. Below is a list of items that make my children special – can you figure out which preference belongs to who? Remember, James is 12, M is 3 and A will be 2 next week. You might be surprised when the answers are revealed.

And yes, I know it’s more than ten – this was seriously a little too easy in my opinion. Should I be worried?

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Top Ten: Ways My Kids Are More Special Than Yours

1. Can’t stand having sticky hands, the term “sticky” including hands having glitter, paint, or any kind of food on them, or my personal favorite, hands that are not quite dry after washing them.

2. Will not tolerate food touching or even being on the same plate, even if all of the food is well-liked.

3. Don’t stir the fruit into the yogurt unless you want to witness this child have a meltdown.

4. Needs a hug, kiss and high five before someone leaves, 2 out of the 3 won’t do.

5. Tags need to be cut off, especially visible ones. Not just on their clothing but on stuffed animals and other people’s clothing as well.

6. The light has to be on, but the right amount of dim in order to go to bed without a fuss.

7. Ramen noodles must be eaten with a fork.

7a. Ramen noodles must be eaten with a spoon. Come on, tell me you don’t have a preference. If you say you’ve never eaten Ramen I don’t believe you.

8. Fruit will only be eaten when cut up, but then will be eaten in vast quantities.

9. Willing puts face under the water of a freezing pool, but if water gets on face while having hair washed goes ballistic.

10. Screams frantically and runs from the noise of hand mixer or blender, unless able to press buttons themselves.

11. Cries over a cockroach but willing catches cicadas, grasshoppers and frogs barehanded.

11a. Delights in finding a cockroach but cries if a housefly is too close for comfort.

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Come on, fess up – what makes your kid so special?

Top Ten: Emotions Experienced As A Parent Of A Special Needs Child

In the past when I expressed worry over something about James, I often heard as a reply that every parent worries about their kids, special needs or not. “You won’t have to worry about James breaking curfew, doing drugs, or driving a car,” I’ve had said to me. “Every parent has worries, regardless of if their child has special needs.”  And there is a lot of truth behind those statements.

But I could never shake the feeling that somehow the car and curfew and even getting-into-trouble worries would be worth not having to worry about James’s surgeries, safety from predators, growing old alone, his lifespan and long-term care needs. Now as a parent of two more very typical children, I am even more certain that the emotions involved are indeed different. Special needs or not I love all of my children immeasurably, but the feelings of joy, sorrow, pride, fear… these are all experienced in very different ways regarding James or my younger two.

Top Ten: Emotions Experienced As A Parent Of A Special Needs Child

1. Pride – Think about the pride you felt at your children’s first steps, first words, at the A on their spelling test. I felt that same pride when James walked at 2 1/2 years old, spoke his first word after 4 years (and 4,000 hours of ABA therapy), and got a 3 out of 20 on his math test (up from a whoooolllle slew of zeroes). Yep, that very same pride – times a jillion. And to make it even more complicated that pride was mixed with other emotions like relief, surprise, joy and a little bit of sorrow.

2. Frustration – Ever feel a flash of annoyance when you have to repeat yourself to someone for the third time? How about the eighth time? Or the twelfth time with your hand on their shoulder? How about repeating everything (truly, everything) you say all day to one person anywhere from twice to more than ten times, and having even your raised, angry (semi-hysterical) voice ignored as if you don’t exist? And how about knowing that your annoyance is misplaced because the person “ignoring” you truly can’t help it (most of the time, anyway)?

And how about waiting on hold to make a doctor’s appointment or discuss that medical bill that seemed a teensy bit high – we’ve all felt that frustration, right? How about doing that for 8 different doctors (for just James) and having to hang up every time your wait time gets too long because there are 3 kids at home dancing in circles around you?

3. Envy – I no longer care how it sounds. It doesn’t make me love James any less to admit that I sometimes envy other parents when I watch them scheduling playdates and sleepovers for their kids, dropping their kids off at an activity (as awesome as they are we have to stay in the vicinity for most of James’s activities, ), or helping their child carry a huge science project into school. I also envy the kids who are riding the subway or walking to school alone, who are riding their bikes or going to movies with groups of friends, who effortlessly scale the monkey bars or join in a game of kickball, who can walk through Central Park carrying a balloon.

4. Sadness/grief – There are obviously more sad memories in the span of James’s life than I care to recount, and if you have a loved one with special needs I am sure you have a few doozies tucked away yourself. It’s one of the invisible bonds between special needs parents – the knowledge that we have all experienced deeply sad things and understand that when it comes to a disabled child the stages of grief are cyclical. For me, no matter how wholly I’ve accepted James’s disability, every stage of his life brings along as many new sorrows as it does joys.

One of my saddest moments regarding James recently was watching him through the fence at school at the end of the day. The fifth graders were outside for a bit of extra recess and I spotted James across the courtyard, valiantly following a group of boys from about 10 feet behind. Once in a while the boys suddenly swerved or started to run away from him and every time James would do his best to keep up, even though it was obvious that the boys were not interested in having him as a shadow. James trailed them this way for the last 10 minutes of the school day, smiling, trying to talk to them, blissfully unaware that he was unwanted, and equally unaware that his mother was watching him, silently loathing those boys while deeply grieving for her own.

5. Gratitude – One of the most common things I’ve said over the last decade is, “it could always be worse.” And though cliche, it’s absolutely true – despite our struggles, the bottom line is that every family has problems and many are not as fortunate as we are. I’m grateful for the patience, generosity and empathy I’ve learned from having James. I’m grateful to other people who will never even know how thankful I am for their kind and giving spirits toward James. And yes, I’m grateful that it’s not worse.

6. Guilt – First there’s the guilt that comes along with feeling the aforementioned frustration and envy. Then there’s the guilt I feel for letting James play on his ipod because it”s easier than trying to force him to play a game with me, the guilt of giving him meds I’m not 100% sure are working, and the guilt from lying to him about why we can’t have his “friends” over to play every week – you know, those “friends” he was following around at recess.

7. Worry – I mentioned that someone said that at least I wouldn’t have to worry about James driving a car. Driving a car? How about getting hit by a car? Worried about making friends at school? How about not getting picked on horribly at school? Finding someone, getting married? How about worrying that if he gets married he might have children, and who will be taking care of them? Worried that your child won’t make enough money? How about worrying that when he gives someone $20 for a banana he won’t expect change back? Worried your child might end up doing drugs? How about the side effects of the drugs he’s on already?

8. Inspiration: Nothing comes easy for James. Not grades, sports, friends. Then there’s the surgeries, pills, doctors, therapists, and let’s not forget the amazing list of phobias. But James is still made sincerely happy by the small things in life. Somehow, James has learned the most important lesson of “look for the silver lining.” I can have another chicken nugget? Thanks, mom! I love you. or We can read one more chapter? Tonight? Awesome! And did you catch how much he loves mustard (see last week’s Monday Minute for a recap)? Watching James get through the day and still smile so easily is a true inspiration to me.

9. Anxiety – is different than worry. Anxiety is what makes my stomach tighten every time I walk by a balloon, even when James isn’t with me. Anxiety is what prompts me to check and recheck every aspect of our family vacation to make sure it is 100% special needs friendly. Anxiety is what keeps me up the entire night before James starts a new school year, typing out all of the “must know”information for the new teacher. Anxiety is the best word to describe how I feel, listening to James thrash and scream hysterically for “help, Mom” from the other room while he is having his teeth checked, his blood pressure taken, or God forbid getting a shot.

10. Hope – More than one therapist told us (and was promptly let go right afterward) that James would never talk. James’s kindergarten and first grade teacher told us flat out that even though James was starting to recognize sight words, he would never learn to read phonetically and would have very limited reading skills at best, so not to get too excited (we couldn’t fire her). We sat in an IEP meeting full of educators who informed us that James would be “eaten alive” in a NYC public school. As you can see from the Monday Minutes, James is speaking juuussssst fine. He reads at grade level and is completing his fourth year in the NYC public school system, with only a couple of bites missing. So when someone asks me if James will be unemployed and living at home with me when he’s 40 (much more tactfully, of course) I can honestly say, I hope not!

Top Ten (or so): Things That Have Been Said When It’s Been “One Of Those Days”

I think these are probably better left unexplained. Despite what it looks like, it wasn’t a terrible night – just “one of those days.” From about 6:00pm on.

1. Me: Run out of this room right now and don’t stop until you get to time out. That is not fast enough!

2. M (my 3 yr old): I’m going to hit the ghost with this oven mitt. Come on! A (cackling madly): Spooky ghost!!!

3. M (Coming out of James’s room): I said sorry for hitting James. Do I have to go to time out?

4. A (my 16 month old): I put it in the garbage. Me: What in the garbage? A: I put it in the garbage. Me: What?! Show me!

5. M: I don’t want to put my baby in the garbage. Me: Well, that’s what happens when you’re too rough and her head falls off.

6. Me (to Adam, who has just rescued his apple. From the recycling bin): You bring that apple back here right now. Hey! Right now!

7. Me: You didn’t eat your soup. James: I’m done – I’m sooooo full. Me: There’s white rice in it. J: Oh, okay (resumes eating).

8. M: Am I so cute? Holding a wet pair of keys, a handful of wipes and two wet barbies. Wearing a baseball cap, a tutu, a backpack and “glass slippers.” With socks.

9. M (tearfully): Can we please go to the grocery store, mom, and buy a brand new baby Toby? Please, mom!

10. Me: Where did you find that banana? A: On the train table. Me: Fine.

11. M: You tickle me and I’ll watch, ok?

12. Me (to M): I’m going to count to 3 and you’re in time out – 2…… James: You forgot 1. Me: No I said “count 2-3.” James: Good one, Mom.

Top Ten: Emotions Experienced By A Grandmother Of A Special Needs Child

November 8, 2011 3 comments

It’s time for another installment of the ever popular Top Ten series. Still keeping it in the family, today’s guest writer is none other than my mom. Knowing this ahead of time gave me a week to reflect on the introduction I would write for her, but as today drew nearer I was still getting nowhere. We’ve definitely had our ups and downs over the years, especially if you count the downs as one huge leap into the valley of teenage rebellion. But though it sounds like a cliche, it’s 150% true – nothing makes you appreciate your mother more than becoming one yourself.

So after some consideration, the best word I can think to describe the relationship I have with my mother is “irreplaceable.” There is no one else on the planet I feel more comfortable leaving my children with (I think they actually prefer her most of the time) and nobody I would rather call when one of the kids are sick (she’s also a nurse – bonus!). But she’s also the first one I call when I’m worried about talking with the principal at school or when James says something really funny (and embarrassing). If I hang up two and a half minutes later, all of a sudden, without so much as a goodbye, I know she won’t feel insulted if I don’t call back right away – come on, who else can you do that with? IhavetogobeforeJamesgetshitbyacarsorrygottarunwillcalllater click.

As a mother of 5, I know that she actually gets it when I am stressed out about seemingly little stuff (lots and lots of little stuff) or when I am ridiculously excited about James playing ball at recess or getting dressed in the morning without a fight.

My mom reads books on Gmail video chat to my 2 yr old so I can help James with his homework. She brings comic books for James and finds special apps on her iphone for the kids when she visits. She drops everything and travels 2 hours each way to babysit while I go on school tours, doctors’ appointments, and IEP meetings – even a date once in a while!

She’s the only reason I didn’t cry at the DMV, when after hours with a screaming toddler they told me my license was suspended due to an unpaid ticket for a bumper sticker in my rear window. From 2004. She’s the only reason I didn’t totally flip out walking 3 miles to my OB last year, in the pouring rain, 8 months pregnant with my 18 month old in the stroller, desperately waving at any taxi that passed within a mile radius. She’s the reason that instead of feeling defeated, we both ended up laughing like lunatics while running through the rain.

My mom has an incredibly soft spot for James. I think she is too easy on him and generally spoils him rotten. But I can’t tell you what a relief it is to know that there is someone out there who is as crazy about all of my children, special needs or not, as I am.

So in the end, I guess the hardest part about writing this intro for my mom has been picking out a few highlights from the million things that make her special and that she has done for me (and my family). I mean, this is supposed to be her guest post. So for now, without further adieu:

Top Ten: Emotions Experienced By A Grandmother Of A Special Needs Child

by Elizabeth Gerrity

  1. Was my SCARIEST moment one of his surgeries or hospitalizations? No! It was when we were boarding the train and his leg fell through the gap between the train and the platform up to his thigh. This was after I pointed out the gap to him about ten times! He didn’t even lose his shoe though and his leg was okay!
  1. One of his CUTEST moments was when the shoe saleswoman was trying on a pair of shoes for him and he leaned down toward her and hugged her and told her he loved her. Or was it when he told the guy in the elevator that he loved him?
  1. One of the ODDEST things about my grandson is his fear of bubble wrap. I can be in a totally different state from him but when I see bubble wrap, I feel a wave of anxiety!
  1. The FUNNIEST exchange I’ve heard recently:

Mother: James, if you don’t pull yourself together, you’re going to bed at 7:00.

James: Noooo! 6:00!! (he can’t tell time).

Little sister, age 2: (in a soft voice) 7:00….(also can’t tell time)

James: Noooo! 6:00!! And so on….

  1. The GROSSEST occurrence was when my grandsons megacolon caused both toilets to overflow stool (fecal material, BM, poop) all over the bathrooms and his mom spent Christmas Eve up to her elbows in it.
  1. My SWEETEST story was when the group of waiters and waitresses sang a loud Happy Birthday song to James and he tried his very hardest not to cry but couldn’t help it and the more he cried, one by one the singers stopped singing. When it was all over, he told them it was a great song.
  1. My most ROUTINE moment with my grandson is when he asks: “This is a nice day, isn’t it Grandma?” about 50 times in ne outing….but he’s usually correct.
  1. My most LOVING moment is when the room is quiet and from across the room, James’ voice calls out: “I love you Grandma” Always nice.
  1. My most SATISFYING moments are making my grandson laugh! He thinks everything is funny, over and over again! Even my jokes!
  1. My PROUDEST moments are watching my daughter in action! I remember her as a teenager and at times, teenagers can be a bit self involved. I have watched my special needs grandson bring out qualities in my daughter that make me so proud! She is a mother now, 24/7 as the phrase goes. She is his advocate. She is loving and patient. Although at times my grandson is our greatest challenge, he is our gift from God!

Top Ten: Life Lessons Learned from Exceptional Individuals

November 1, 2011 4 comments

They say it’s not prudent to mix family and business. To that I say, “pffffffffffft.” First of all, if you haven’t noticed, my family is my business (seriously, have you read this blog?). But more importantly, occasionally including my family in my blog is a way to share their stories and point of views while still respecting their privacy.

I know – you are probably scratching your head as you read “respecting their privacy,” coming from the same woman who wrote “Airing the Dirty Laundry.” I truly believe that sharing stories and being open with others regarding your loved one’s special needs almost always results in more help, support, better understanding and a lighter load overall. Because of this philosophy I treat my life like an open book, and let’s face it, James’s too – I just don’t think he’d care that I share his stories with you (have you read the Monday Minute yet?) However, I don’t feel that it’s appropriate to apply my “open policy” to family and friends – it’s not my business to share my husband’s struggles, my parent’s opinions or my siblings’ feelings regarding James, disabilities, politics or the weather (okay, maybe the weather).

Which is why I’m so glad that they are stepping forward on their own (with a very slight tiny nudge from me). First at bat is my favorite, only, little sister, Brigid. Brigid lives in CT where she is a senior in high school. She spends one week every summer volunteering at Clelian Heights School for Exceptional Children in Greensburg, PA and around ten more volunteering at the Searfoorce House of Undernapping Children in NY, NY.

I am the oldest and she is the youngest of five siblings, but don’t let our age difference fool you – this girl has been a lifesaver (and sanity saver) on so many occasions I’ve lost count. She is fantastic with all of my kids, but is especially patient, caring and patient with James. Yes, she’s that patient. Brigid views me on such a high pedestal that I feel obligated to do better when she is around in order not to crush her delusions about my amazing parenting skills. Though she is the baby of the family in many ways, you will see when reading her Top Ten that Brigid is wise well beyond her years.

Top Ten: Life Lessons Learned from Exceptional Individuals

by Brigid Gerrity

My experience at Clelian Heights, combined with all of the time I’ve spent with my nephew, James, have taught me so many truly amazing life lessons.

1.       Don’t sweat the small stuff. I am one of those individuals who is regularly prone to overreacting to the most ridiculously minute things. One of the most beautiful things that I’ve witnessed in both James and in my experience at Clelian Heights is the ability to just let the small stuff roll of your back and to realize what’s really important.

2.       Say “I Love You” candidly and frequently.  James is our family love bug. As Michaela frequently jokes, and as we’ve all personally experienced, James’ favorite and most practiced phrase is “I love you”. He is a constant reminder that one of the most important things you can say to someone important to you is “I love you”. Never be afraid to say it.

3.       Be open to everyone you meet. Probably one of the most outstanding things that I consistently witnessed at Clelian was the fact that all of the students, regardless of how well they knew the other students, were always receptive and open to one another, as if they had known each other for their entire life.

4.       When you’re willing to work for something, you can achieve it. My sister is the one who has taught me this life lesson. Michaela strives day in and day out to accomplish so much with James. She has been an absolute inspiration, because I see that the more energy and determination that she devotes to James’ cause, the more and more she accomplishes on a regular basis.

5.       Rejoice in the triumphs of others. One of the most moving days of my entire life came when I was working with a Down Syndrome student, Ryan. He is about eight years old, and we spent all class working together, putting colored cotton balls into their matching colored container. Every time he got one correct, his level of excitement and pride allowed me to feel more accomplished and more proud than I ever have in my entire life.

6.       Patience is everything. I’ve learned, from my nephew and from the students I’ve worked with for the past few years, that patience, understanding, and compassion will take you so far with just about anyone and everyone that you meet.

7.       Take each day one step at a time. Myself, and so many people I know, are planners. We plan so far into the future that we forget that today is today. Each day for James and for the kids I’ve met over the summer is just that day. Whether there’s something exciting planned, or whether it’s just a normal day for the books, its special, and it’s worth paying attention to.

8.       Make sure to have fun, even if you feel silly doing it. This past summer, Clelian Heights had a music performance/dance in their gymnasium. Initially, I was experiencing my usual paranoia that everybody was going to laugh at me dancing in public. However, when one of the students invited me out on the floor to dance, not only was I having an absolute blast, but I realized that feeling totally silly was the best part.

9.       Give people the benefit of the doubt. James, and all of the individuals that I’ve met at Clelian Heights, are completely wise beyond their years. They have something special that so many people these days do not have: they have their total innocence. They aren’t cynical, they aren’t negative: they are receptive and positive, and they expect the best out of people, even when those people don’t necessarily deserve it.

10.   Enjoy the simple things. I think that oftentimes people think that life has some complex answer to what being happy is all about. Honestly, though, through all of my experiences with these amazing kids and adults, especially James, I have come to realize that sometimes the answer to being happy and content is something very simple that is right in front of your nose.