What Defines Us

I once had someone ask me if we didn't, perhaps, identify too much as the family of a child with special needs?  I remember feeling bewildered. I didn't answer.   How could I answer?   How was I supposed to answer?  I wondered what our life looked like from the outside.  However that was, it probably didn't accurately reflect our reality anyway.   There's a reason parents of kids with special needs tend to hang out together.  Nobody needs to explain anything.  How could we not identify ourselves as the family of a child with special needs?  How on earth would it be possible to do less of it?

We try very, very hard to do things with M. on his own and encourage his own interests.  Sometimes our efforts are more successful than others.  We don't expect him to be responsible for his brother too much in the short term, and while we hope he will want to in the long term, that's not something we dictate to him. (Though I will freely admit that any significant other he brings home will be scrutinized, especially how they interact with P.)  But doesn't his brother's existence, his very twin-hood, define M. to a certain extent?  In the same way that my having nine siblings defines me and my husband's strong Italian heritage defines him, the way we grow up shapes the people we are. To what extent do we define ourselves and to what extent is that definition thrust upon us, either by circumstance or accident or luck?

P. has spent the last 10 days at a local camp that serves children with special needs and those who are economically disadvantaged.  Amazingly, this is his 5th year attending.  That's hard to believe when I think of how we chickened out and decided not to send him at the eleventh hour the first year he was eligible to go. We only agreed to let him go the following year because our amazing friend K. volunteered for the week and was able to send us daily reports.  I remember being amazed at the "veteran" parents who threw a sheet on the bed, kissed their kid on the cheek and left.  They just... left.  We stayed far longer than we should have that first drop-off and M. begged to stay because "who will take care of P?"  For that entire week we didn't dare move very far from the phone in case he was miserable and needed to be picked up right away.  We talked about him constantly.  The second, third and fourth years he attended, P. jumped out of the car when we got to camp.  We felt more comfortable leaving him, though we still cried on the way home.  Still, we ventured farther afield with M. and were able to stop worrying for longer and longer periods of time.

This year P. was excited to go, he started bouncing in his seat when he recognized the road.  But he didn't leap out of the car.  He treated it more like home.  He waved hello to everyone, strolled into his cabin and picked out his bed (top bunk, of course).  After we put the sheet on his mattress, he shooed us away.  He climbed up and set it all up himself -- pillows and blanket and Barney and Blue and Woody and Buzz and water cup just the way and where he wanted them.  When it was time for us to go, he didn't cling even a little bit.  I was happy about it in the moment.  "Look how mature he's getting!" We were different as well. We knew he was in good hands and that he would have a lot of fun. We chatted to the counselors we knew.  But instead of instructions about P. we asked how their year had gone and what were they doing now?  The walk to the car was easier and we didn't cry.  M. had a camp the same day and we had to get him where he needed to be on time. We couldn't dally. It seemed we had matured as well. We had become the parents I marveled at the first year.  We just... left.

Without having to get up for summer school, we all indulged our night owl tendencies and slept in later.  It was very quiet. I felt more successful in my attempts to meditate.  We spent all day gardening or at museums or fossil hunting or visiting Toronto.  We even saw a movie that wasn't animated.  We ate out at restaurants without caring whether pasta was on the menu.  We shopped for furniture without worrying about whose patience was waning.  There were no complicated vitamin regimes to prepare (and consequently, none of us took our vitamins either).  My husband and I each went to events without in-depth discussions of schedules. We didn't think about therapies. I went to work and didn't panic about being home in time for the bus.. No one's bowels were the topic of conversation. No one needed their meat cut or help getting their teeth brushed. I didn't have to translate anyone's communications.  I almost never had to look at someone's clothes before they left the house to make sure everything was on right. We were able to take long showers without making sure someone else was watching to be sure P. didn't wander outside in his underwear or decide to sit in the hot car or eat the entire contents of the cold cut drawer or try to turn on the stove or drape the waiting laundry over the furnace and hot water heater.

That's not to say we didn't miss him.  Of course we did!  When it rained, we worried he wouldn't be able to swim.  And when it was sunny, we worried he was giving the counselors a hard time getting out of the pool.  We hadn't sent as much food with him this year, was he eating most of what they served?  In the past he has gone to the Christmas in July session -- was he wondering where the tree and the decorations were?  Perhaps there was a theme for this session that we should have known about and talked up.  I noticed that M. was sleeping in his brother's bed.  He didn't want to do some of the things we suggested because he wanted P. to do them too.  He invented a new game that he couldn't wait to show his brother how to play. The large hole in the day was more than just P.'s absence.  I found myself constantly analyzing thoughts and emotions. What exactly was different this time?  And why was it different?

And then as we were in the kitchen last night, making P.'s favorite pasta salad for his welcome home meal and talking about what time we had to leave this morning, my husband hit the nail on the head.  "This week has been too easy.  It feels wrong somehow."  With just M. to worry about, everything was easy.  Had we been experiencing life as a "typical" family?  Is this what family life feels like for most people?   That's not good or bad, just something we have never experienced. It felt like we were coasting through life. If we had this existence all the time, we might forget to be grateful. We might forget to strive for someone other than ourselves. We might forget to be cheerleaders. We might forget to be who we are.

As I am typing this, the television is blaring, and the rhythm of lots of little figures being dumped out of their bucket and put back in resounds through the house.  I've had to negotiate snacks and supervise wiping and cut up meat.  At least ten times, I have said "Leave your brother alone!"  I've packed the backpack for school tomorrow and made sure the speech device is charged and that we have lunch supplies ready.  I have washed all the bedding so that Barney and Blue and Buzz and Woody can go back to their normal places.  The vitamins are laid out.  Everyone is where they should be and everything is once again as it should be in our world.  And to my mixed feelings of gladness and regret, P. has signed "more" and said "more camp" and "go camp" several times since we arrived home.  He is trying to get used to the normal routine again too.

This year, camp gave us a taste of what life might be like when M. and P. don't need us on a daily basis. Children grow up and move on and parents learn to redefine themselves in the wake of those milestones. We expect our typical children to do that.  We're proud of them when they do.  But our children with special needs?  We set up trusts and we arrange for guardianship and we put them on a waiting list for an independent living situation when they're 11 because those lists are so very long.  We never talk about our fears that it might never happen. And maybe if we're totally honest, we're equally afraid that it will.  And yet our children mature and grow just as others do.  They become more independent in their own ways and eventually they begin to build a life away from us, even if only an internal one.  Even if it is inch by inch over a long period of time.  Sometimes it begins with the return to a place they feel at home in, with people they feel safe with.  And we have to let them do it.  Even when it's hard.  Especially when it's hardest on us.

I am the parent of a child with special needs.  That role does define me. I am the parent of a typical child. I am the parent of twins.  Those roles define me as well. But now, maybe, as time goes on... I see that other things, some long-forgotten, and some new, can define me as well.  And I will need to sit in the noise with these thoughts until I become used to them.

Ten Celebrations for Ten Years

We certainly didn't set out to celebrate in this way, but it could become a trend... (not really!)

1. Cake & ice cream with the local relatives.
2. K. takes them to SkyZone!
3. Actual birthday - wake up to balloons, birthday treats at school, then special dinner & presents with Mom & Dad
4. Dinner out with Grandma
5. Visit to Strong Museum with our friends the C's and we celebrate S.'s birthday too.
6. MagicQuest with the NJ & PA cousins.
7. Cake & ice cream with the rest of the NJ relatives.
8. Dinner at Friendly's (free coupons!) with our friend J. It's her birthday too!
9. Treat (more free coupons!) at Barnes & Noble.
10. And to round it out... the all-important spending of the birthday gift cards!

Ten Things About You at Age 10

Double Digits!

1. If you could figure out how to play Wizard 101, Skype with your cousins, play on your DS, eat, and still be able to roam around the house, your life would be set.
2. Ipod Touch!
3. You and Dad are bonding over 3 Stooges episodes.
4. You've got quite the witty sense of humor and are quick with plays-on-words and puns.
5. Fourth grade has not been wonderful this year, but we're working on it.  Art Club was a bright spot.
6. You've taken to calling your brother "B". At first I thought it was "Bee" but it's "B" as in Baby B (you, of course, were Baby A).
7. I love that you use words like "shall" in everyday conversation.
8. Making balloon animals is a new obsession.
9. When you find a good book, you can't put it down.  A series is even better.  Last weekend you started and finished a 200 page book and wanted to know did we get books 2, 3 & 4 from the library too?
10. You and Dad have been going to Mandarin Kung Fu twice a week and I catch you practicing your stances when you think no one is looking.

1. You're starting to make up jokes and silly games and your teacher reports that you're very funny at school.
2. If you could have the Christmas tree up all year you would.
3. Dance class is still going great.  Once you get there, that is.
4. The "David" books by David Shannon crack you up, and you'll sit there reading them to yourself now.
5. You still love your hats and now you think everyone should wear one too. But oddly enough the hat love does not extend to baseball caps. You will absolutely not wear one of those. You look at me with an expression that says "Too common! Everyone wears those, darling."
6. You've moved on from the Wiggles & Barney to Hi-5 and love to sing and dance with the show.  You also really love Signing Time and sing and sign and talk with Rachel, Leah & Alex.
7. We got a touch screen laptop and you have been figuring it out quickly!
8. This year at Fantasy Island we let you go on most of the rides without a grownup.  You were so proud of yourself!
9. You love to buy lunch at school when it is spaghetti or turkey & mashed potatoes.
10. You are only a morning person when there is no school.

Life With Boys II

When is a smoke/CO alarm not real? When it is the toy metal detector!

Life With Boys

The newest game here is "throw your socks at the brick fireplace wall and see if they stick" accompanied with lots of hysterical laughing. All this Mom can say is "Huh?"

Stuff I Say A Lot

• We've got to leave in 10 minutes.
• We have to go.
• Get in the car.
• Come on! We're going to be late!
• I told Grandma we'd pick her up, she's waiting!
• Getinthecargetinthecargetinthecaralreadydammit!
• Did you pee before we got in the car?
• Go pee.
• You do too have to go, you're dancing all over!
• Put that down/Stop talking/Tell me in a minute and go pee.
• Do you have to pee? Are you sure?
• Well *I* have to go, so you may as well go too.
• Yes, you can use the men's room. But don't talk to anyone and come right back.
• You have to pee now? Here?
• You washed your hands, didn't you?
• What am I making for dinner?
• No, you cannot eat spaghetti again.
• Well, what are you going to eat?
• No, you cannot eat that.
• Spaghetti!? You're going to turn into spaghetti!
• You need to eat more than that.
• You ate all of that today?
• Oh no you don't. You've already eaten. Put that back.
• I hear my phone ringing. Do you know where it is?
• Daddy's at work.
• Daddy's upstairs.
• Daddy's asleep.
• Daddy's stopping at Grandma's on the way home.
• I bet nobody calls me when I'm not here, do they?
• 10 minute warning!
• Don't you dare tell me those shoes are too tight.
• You're fine. It doesn't hurt.
• Should we close the drain?
• We'll cross that bridge when we come to it.
• Look at Mommy! Smile!
• Keep doing what you're doing, pretend you don't see the camera.
• Have I got the camera?
• Dang, the camera battery is dead again.
• How come I'm never in any of these pictures?
• Yes, I did tell you that. About 10 times.
• I do not want to hear another word about (Halloween/Christmas/Your Birthday) until after (Back to School/Thanksgiving/New Years).
• Not today. But you could put it on your list for Santa.
• Well if you don't get it for Christmas, maybe you'll get it for your birthday.
• I'm just a little bit turned around
• I made a wrong turn
• I know where I am but not how to get where I should be
• Stop snorting and use words please.
• Remember the rules! No stitches until you're 10 and no broken bones til you're 15! (I keep upping the ages. So far it's working!)
• Why do I spend good money on pillows if you're just going to throw them at each other?
• Why are your sheets off the bed?
• There's no room for you in that bed with all those toys.
• This place is filthy!
• Do NOT spray that hose inside the windows!
• Go spray over there!
• If you get me wet, so help me...
• Come over here and spray the mud off my hands/feet/shoes.
• They arrest people who go outside without pants on.
• It's in the (bedroom/pantry/basement/closet/your room/etc)
• I don't know where your stuff is. I have my own junk to keep track of.
• Well where did you leave it?
• Where's your brother?
• Go play with your brother.
• Turn off that computer/DS now.
• You're going to have to hang up soon.
• You're silly!
• I'll call their mom and set it up.
• Of course I'll read that book to you.
• This book sounds really good, we should read this one.
• Yes I want to hear, tell me all about it!
• Super job! 2 Thumbs up!
• Who wants a smoothie on the way home?
• You can have a donut, either one.
• Who loves you?
• I love you!
• Daddy and Mommy and M./P. love you the best.
• Everybody loves you!

I Hide, You Seek

The other night P. wanted to play hide and seek before bed. "No way, " I told him, "it's already very late! Get in bed!" I turned around from putting clothes away, turning on the fan, confiscating the books, etc. and there he was under the covers. "I see you! I know you're under there!" M. cracked up laughing. "That's not him, Mom. He's in the bathroom." Sure enough, I go in the bathroom and there he is, laughing at me. You can trick Mommy sometimes!

I'll Be Back Soon

D. fed the kids while I was out. But he needed me to clarify the instructions on the box of macaroni and cheese. I love him dearly, but... really??? Clearly he needs to be in charge more often. If it's the same at your house, call me and we'll go do something!

This Morning I Came Downstairs

to find P. getting breakfast in bed ready. (M. who is usually the mastermind at shenanigans like this was still fast asleep.) He had the baking sheet we use for a tray out on the counter (I really need to buy a bonafide serving tray), a coffee cup with an inch of water in it and some leftover ravioli and a fork. Such a smile when I asked him if he was making breakfast in bed. He even got it off the counter and over to the stairs without spilling. Then he yelled "Help!" And when we got upstairs he climbed back in bed and ate it. Wouldn't share with us at all. Is this kid too much or what? The wheels are turning in there, P. I can see them turning...

The Answer to All Eternal Questions

Last night, M. had trouble falling asleep. "What seems to be the problem?" I asked. "You'll think it's crazy, Mom, but it just popped into my head and I can't stop thinking about it and I just don't know..." "What is it?"

"What is the meaning of existence, Mom? I mean, why are we here?"

Crap. And here I thought he was going to ask something easy like whether Santa was real.

Philosophers and all manner of learned and common men have been asking that question since time began. How to answer? And more importantly, how to answer so he'd feel reassured enough to actually go to sleep?

And then it came to me, like the hand of God touching me in a blessing. "It's love, honey. We're here to love each other and nothing else matters." He was asleep in 10 seconds flat.

All his questions should be that easy.

They're a Great Team

This morning D. and I woke up to our sons proudly bringing us breakfast in bed. M. operated the toaster, P. buttered and cinnamoned the toast. P. got out the bottle of juice, M. poured it. M. scooped out the yogurt for the parfait, P. put the berries in. P. decided ice cream would be good, M. scooped it. P. sang up the stairs, M. carried the tray.

Could they be any cuter? That's why I write this stuff down, so we'll all remember.

Lists from a Vacation

The boys and I just spent the better part of a week in NJ visiting my family. On the long drive home, this is what I was thinking about:

Stuff Brought to NJ:

• Too many clothes for the boys, not enough for me.
• Too much food in the cooler
• Apparently not enough books

Stuff That Should Have Been Brought to NJ:

• The main vitamins for P. (I bought all the secondary vitamins but left home the one that they all get mixed into)
• Some meds (non-necessary ones)
• The medicine eye dropper for the necessary one (but P. learned to swallow pills, yay!)
• my swimsuit cover-up

Stuff Left in NJ:

• Lots of hugs and kisses
• 2 boy socks (not matching, naturally)**
• 1 Buzz Lightyear*
• 2 oil portraits of M & P (they needed to dry first)
  
• 1 book the nephew was in the middle of
  

Stuff That Has to Go Back to NJ:

• 1 portable DVD player and some movies, most particularly Beauty & the Beast
  

Stuff Acquired in NJ:

• Lots of memories! cousins reading to each other in bed, Wii dragon battles, Friendly's ice cream, swimming, reading the paper, one little cousin dragging one big cousin *everywhere* (c'mon!), yummy food, book club, seeing friends, riding in each other's cars, going to the movies, taking uninterrupted showers, and many more...
• As many snacks and drinks for the ride home as I could "steal" :-D
• Some great photos that my friend K. took
  
• Toy Story 3 toys/games (thanks Aunt D!)
• 2 Koosh balls that also become spiky hats (thanks Aunt R!)
• Clean laundry! Yay!
  

* updated: Buzz has been found under the seat of the car. Call off the search party!

** update to the update: I think I found the socks too, mixed in with mine.

Ten Things You Don't Want to Find in the Washer or the Dryer

10. Tissues

9. Rocks

8. A Fork (?!)

7. Chewed up Starburst candies

6. Grass

5. Marbles

4. Eyeglasses (the kind from the dollar store, thank heavens)

3. Crayons

2. Realistic-looking toy snakes

1. Poop!

It's sooooo much nicer to find money. I would also like to point out that, other than tissues, I never carry any of these things in my pockets.

You know you're a Mom when...

• Any sentence with the words "temperature" or "degrees" in it automatically makes you think of fevers instead of weather.
• The only thing you want to say to the young studly lifeguard is "stop twirling that thing before you poke someone's eye out!"
• A stranger in your immediate vicinity 1) sneezes 2) cuts their finger 3) gets dirty or 4) has a clothing emergency. Without even thinking you reach into your purse and hand over a 1) tissue 2) a bandaid 3) a wet wipe or hand sanitizer and 4) a safety pin.
• You also carry snacks in your purse. And crayons. And paper. All in multiples based on the number of children you have.
• You know the locations of all the public bathrooms within a 50 mile radius of your house.
• You know the guy who makes smoothies at the local Dunkin Donuts by name. And he knows you and your kids and who likes strawberry and who likes mango.

Sure Signs That Your Kids Are Growing Up

Other than the obvious kids-wearing-pants-that-now-look-like-capris, I've noticed a few things lately:

• I no longer chuck 3 stain remover sticks in my grocery cart each week.   (yes, you read that right, I used to buy 3 each and every week).  In fact, I don't remember the last time I had to buy a stain stick.  We still use them and I still keep one in each bathroom and in the laundry room but they are lasting a LOT longer.
• Related to stain stick quantities, I'm not sweeping up as much food from under the chairs.  So if it's not on their clothes and it's not on the floor, it must be going in their bodies!  Wooohooo!  Which must be why their pants are all suddenly too short.  (Sorry boys, you'll have to look like geeks just a bit longer until it's shorts weather).
• Another household cleaning product I no longer buy in massive quantities is Magic Eraser.  No one draws on the walls anymore, thank goodness.
• I often find them reading books together rather than bringing one to a grownup.  While this is sweet and has me running for the camera, I hope that we're not totally outsourced as book buddies yet.
• I can say "get in the car" and they actually go in the garage and do it.  And one of them can buckle his seat belt.  Wow.  The other one might also be able to do it with a bit of practice, but if I show him how to buckle it, that means he would also know how to UNbuckle it and I'm just not willing to go there right now.
• Ditto when I say "get dressed" or "get undressed." 80% of the time it actually happens and the dirty clothes end up in the hamper.   Except for socks, but hey, every home needs a few socks strewn about to make it look lived in.
• I almost never have to clean pee off the floor or the wall anymore (aiming takes practice and parental patience).  I only have to wipe the seat half the time.
• Everybody knows which recycling bin is which.
• I have help setting the table, putting the groceries away and dusting (Ok, that's not totally honest.  I never dust.  But when we're having company and I notice it needs to be done, I get volunteers).
• They notice what's on the car radio and now I have to give them equal time.
• They order for themselves when we go to a restaurant (I only have to translate a bit for P.)
• We can sit through an entire movie at the theatre.
• Homework!

You'd Think I'd Know Better

I made the mistake of mentioning to D. that "gee, no one has been sick all winter!" 

Now the germs have decided to hold their annual convention here instead of in Tahiti.

Sleeping In

Daddy sleeps in:  morning progresses as usual.  After a long while, somebody might ask "where's Dad?"

Mommy sleeps in: lots of games involving thundering feet, screaming and whooping.  Lots of Daddy voice saying loudly "stop that!"  Followed by loud tv and many trips upstairs to "just make sure that Mommy is ok" with a few bed-jumping detours.

Even with all that I still feel much better.

Nothing to Fear but Fear Itself

Last week I visited M.'s classroom to share a holiday tradition.  His teacher encouraged him to do all the talking.  Last night, while we were getting ready for bed he told he that he was quite nervous standing up there in front of his classmates and talking.  I told him that pretty much everyone is afraid of public speaking.

Me: "They've even done surveys about it.  It's the #1 thing most people fear."

M:   "Really?  It's not my #1 fear.  It's about 4th on my list."

Me: "What's your #1 then?"

M:   "Being in a plane crash over the ocean."

Me: "Well, it's been about 3 years since you were anywhere near the ocean in a plane and we were pretty safe.  Believe me, if there was any serious risk Mommy wouldn't have put you on the plane!  What's #2?"

M:    "Having my leg chewed off by a lion."

Me: "Not too many lions around here.  And they're not real fond of how we taste.  You know how I tell you not to eat dirt or boogers or other yucky stuff?  Lion moms tell their kids not to eat humans.  If you were a wildebeest or a zebra though, you'd have to worry.  What's #3?"

M:  "Going into outer space without an oxygen helmet."

Me: "That would be a problem.  Are you planning on going into outer space anytime soon?"

M:   "Mom! I'm a kid!"

Me:  "Are you planning to go without the help of NASA?"

M:   "They've got all the ships right now."

Me:  "That takes care of that fear, then.  Which leaves..."

M:   "Talking in front of a group."

Me:  "See?  I told you it was #1!" 

Words that Strike Fear in a Mom's Heart

• I think I have to throw up
  
• My shoes feel too tight
  
• I forgot I need 36 cupcakes for school tomorrow (said at bedtime)
  
• I didn't mean to break it (before you know what "it" is)
  
• He (pointing at brother) did it!
• Are bones supposed to poke out of your skin like this? (this hasn't actually happened but it's only a matter of time...)

and at this time of year:

• Santa, what I want most of all is (insert item you never heard about before and will have a hard time finding)
  

There's just something about...

the combined smell of vomit and rug cleaner...