Monday, May 20, 2013

Walking away.


http://www.mostlytruestuff.com/2013/05/autism-shines-and-autism-wanders.html

When Lilly was 3, she was eating playing with her toys while I ran upstairs to get her ballet leotard for dance class.  Literally 2 minutes later the doorbell rang, and I ran to open it and found... Lilly.  With the neighbor.  Apparently she had gone into the garage, stood on a stroller, opened the garage door, and walked across and down the street to a garage sale.  I was shocked.

A year later, we were in the Garden City Hotel for a friend's wedding.  Early in the morning - it must have been 5 am - I hear the hotel door slam shut.  Jon wakes up and runs down the hall to see Lilly waiting for the elevator.

Again, during her 4th year - it wasn't uncommon for us - now at the time living in Manhattan - to tell our doorman on the way out that Lilly was with a babysitter and if he sees her walking around in the lobby by herself, to stop her.

At 5 and now 6, we've realized that this is a "thing."  She has a goal in mine, a purpose.  She is not merely wandering away, following a butterfly or not thinking; she actually has a goal and is ready to achieve it.  Like the time we got the call from the principal... Lilly had escaped from PE, walked into the principal's office, moved a chair around, stood on it, and reached M&M's on a high bookcase.  When caught by the assistant principal, she offered him some candy.  Or the time I heard about last year when she found an opening in the fence at recess and led kids into a neighbor's yard.  Or when we've woken up in the night and hear her heading out the door.  Or last summer when I literally had to call 911 when someone was watching Lilly in the backyard and she walked down the street and was missing for 15 minutes - luckily she was only looking for the next door neighbor for a playdate, but she could have gone anywhery; or the time at the park when we thought she had gone missing, but she had just hidden behind a tree for 10 minutes until we found her.

While this issue seems to *currently be under control, it is something that terrifies me.  The world is not a totally safe place; there are bad people, and scary situations.  Criminals, pools, getting hurt or worse, I am constantly thinking about Lilly's safety and where she is, what is she doing.  We've never even gotten a babysitter to watch both kids at the same time because if they are doing something with Ben, Lilly could go missing.  We've literally - awkwardly - gotten two babysitters in those situations when we need someone during the day.

Recently I was talking to one of Lilly's friend's moms.  She was saying how when her daughter wakes up, she watches tv for an hour before the mom wakes up.  I couldn't believe it.  You mean, you trust your child to hang out and not leave the house or get into some crazy unbelievable kind of trouble when you are still sleeping??  I hear the smallest sound, and I run to Lilly.  Not because I'm neurotic, but she's proven that she's just sneaky enough that 1 in 100 times she is actually up to something that is not good.  I hate to not trust her - and believe me, we've worked with her a lot on getting her to do the right thing and she knows what the right thing is and wants to do it.  But there are those random occasional moments that you can't anticipate, and those are the ones I am worried about.  Those are the ones - like the children here, where the worst case scenario is horrible.

There are not moments off for Jon and I.  When we are at home, when we are at the park, when we are at someone's house or birthday party or a fun event, we are constantly on alert: where is she, what is she doing, is she ok, has she gotten into real trouble. But it's scary.  And the ironic thing is: Lilly is so confident, so capable, so sure of herself, so aware of the world, that in a way I'd completely trust her to go to the store and buy our usual groceries, or hop in a cab in NYC, or go through the airport by herself.  She is ever so watchful and knows exactly what to do.  A few months ago when she snuck out of class, a teacher said Lilly walked right by him and he didn't even think of the fact that she shouldn't be in the hallway by herself, because she gave him a big smile and said "hi" and it wasn't until a little while later that he realized her confidence had tricked him.

Overall, this is under control for Lilly; she wants to do the right thing and doesn't wander off very often.  But the fact that I know that the impulse is there scares me, and I am always waiting for something to happen.  We are light sleepers, we know where she is at every minute of the day.  And now, in 2 weeks, we'll move into a new house where we'll have to make sure in a new environment that she doesn't get the urge to explore...


Friday, May 3, 2013

MIA

I've gotten into the habit of not blogging.  Not that I don't want to share my thoughts; I am constantly thinking a hundred things I'd love to tell the world about my amazing kids, our adventures, our family.  Especially Lilly, who accomplishes so many great things every day and who is becoming such a lovely beautiful intelligent young lady (at the age of almost 7), or sweet just-turned-one Ben, who is doing new and funny things every day.  I want to capture these memories, and then for some reason, I don't follow through on doing it.

I get nervous, sometimes.  Jon's very similar to me in this aspect, but I always feel like I'm jinxing things.  If I tell you Ben is such a good sleeper, all of a sudden he'll be up all night.  Or if I share how incredible Lilly's doing in school, she'll pull a fast one and sneak out of class the next day.  True stories.  In some ways I always feel like the kids are always doing great, but if I say it out loud, if I share it on facebook, if I blog about it, if I brag just a little bit... I feel like it might be taken away, or turn into opposite day.  So instead I feel incredibly blessed in the privacy of my own head. 

But to be honest, the kids really are doing great.  Lilly is so smart.  She is reading, she is doing math, she is writing notes to her friends and putting them in their cubby's at school.  She has great friends, and she is a great friend - we are still enjoying lots of playdates and birthday parties.  She walks into school, and tons of kids - ones I don't even recognize, from pre-K through 8th grade, come up to her "Hi Lilly!" "What's up Lilly?"  We ran a 1 mile race last week for her school's annual Lion's Roar, and I'm not even kidding that 12 year old boys - who looked fairly grown up and tough - were cheering her on by name.  She is a very lucky girl, to be in an environment that is so caring and enthusiastic.  I give a huge amount of credit to the teachers and administration for doing the apparently atypical thing of treating Lilly like she is just like any other child.  Which is what we've always done, but they don't want her to be seen as being different - she is a child created by God just like any other, and their positive attitude affects the other kids and parents in the school.  And it also strongly affects Lilly: if the teachers teach a lesson to the class and truly involve Lilly as much as every other child in the class, and hold their expectations to the same level, then Lilly will think she can do everything they give to her, and that's why she is having such a good year.  But now I'm a little bit rambling; but I do think it's amazing how well she's doing - academically, socially, spiritually (she knows all her prayers) - and it's because of who she is, but also because we've never given her limits.  She has no idea she might not be able to accomplish something; so instead she gives it 10 times more effort until she does accomplish it. 

And Ben is doing great as well.  We celebrated his 1 year old birthday a couple weeks ago on April 16th, and also celebrated it a week before in Atlanta at a family birthday party, and in Bethesda a week after with all our friends here.  He is a lucky boy!  His favorite person in the world is Elmo, so we had lots of Elmo decorations including an Elmo cake.  He is confident and curious, and thank goodness he is not one of those early walkers - he can hold our hands and toddle around but is not ready for total independence yet.  He loves his sister more than anyone (except Elmo), and many mornings at 6:30 it's not unusual to see Lilly in his crib with him after he wakes up, and the two of them sing and hug and have special moments for a half hour or so, until I interrupt it to get the day going.  He has lots of teeth and gives a funny grin when you say "Show me your teeth!"  He's also good at "How big is the baby - so big!" and has just started to point at things.  Whenever he sees a duck he says "da da" or "ba ba" - he is trying to say "quack quack" but is so serious about it. 

We are moving in a few weeks to a house we are buying a few miles away, and it will be great to own a house again.  There are some projects to undertake in the next couple years in it, but it's exciting (although it will be tiring to pack and move!).  Lilly's picked out the biggest room for herself, and the smallest room for Ben.  We'll also have a guest room for visitors...

The summer is already getting full.  We are going to Disney World for Lilly's birthday week (Polynesian concierge!), and taking the auto train down to Orlando for that trip.  Then we drive to Atlanta for 3 weeks of summer camp, while Jon works back here in DC, and then Lilly has a few weeks of camp at her school.  And still trying to figure out if we can plan a week at the beach in August...

So that's all for now.  Will get some birthday pics of Ben up on here in the next few days.

Monday, March 4, 2013

First look.

I think it's safe to say that everything I originally thought prior to Lilly's birth is wrong.  I was small minded, short sighted, and naive - about Down syndrome, about kids generally, about life.  Thank God Lilly changed everything.

I hate the initial information given to new or potential parents of a child with Down syndrome.  Genetic counselors, ob's, random friends and family share so many things that are confusing, broad, wrong, outdated, and so many other not-so-helpful things.  There were a few things that stand out to me regarding the first time we heard the words Down syndrome when I was 13 weeks pregnant.  First, the ob said that she would probably have a heart defect (based on the potential DS diagnosis, not based on anything he saw in the scan), and encouraged us have more tests to basically abort if it was positive for DS  (and yes I think that was all in his same sentence).  And someone said she'd need glasses.  I worried that she would not be independent and wouldn't be able to do things on her own, but - I swear this was one of my initial thoughts - she would be a great traveler so - in my slightly shocked random though, I remember thinking if she can't work and can't live independently, at least she and I can travel the world together someday.  I remember wondering if she wouldn't be able to learn - especially learning to read.  And that she wouldn't have friends, people wouldn't give her a chance, and it might be lonely for her, and for our family.

Breaking down this list: Lilly did have a small heart defect, but it wasn't a big deal and was fixed in an hour long catheterization procedure.  I am so thankful we did not do further testing and amazingly grateful we never considered the option of abortion - but our first doctor was correct when he used the word "positive" and "Down syndrome" in the same sentence, although that's not exactly what he meant.  Again - thank God Lilly is exactly who she is.  And oddly, she is the only person in our family with perfect vision.

As far as independence, I am shocked at how much street smarts Lilly has.  She can figure anything out - literally, anything.  I can't say for certain if Lilly will be living on her own as an adult with no help whatsoever, but to be honest I could almost see her doing it as she is now, at age 6.  The girl knows her routine, knows where everything is, knows what is right and wrong, knows money and transportation, knows social skills and how to get what she wants and needs.  She especially knows how to take care of her brother, and I wouldn't be surprised if it's her taking care of Ben someday, and not the other way around.

And I must have seen into our future, that first day that we heard the word Down syndrome, because Lilly won't just be a great traveler as a grown up - she is the best child traveler that we've ever met.  She loves hotels, handles long international flights like a pro, easily gets her way through airports - checking in, security, that last minute bagel on the way to a flight, and appreciates the heck out of every cultural and social experience.

And learning.  I am so inspired as I watch her work much harder than her peers need to, to learn the same material - but she makes it look effortless and is keeping up so well with her class.  Which means: she is reading.  She is writing.  She is counting, and counting by 5's and 10's, and telling me about presidents and religion and life.  I always thought that reading was so important because it would give her freedom, and the fact that she is so enthusiastic and learning to read so well just makes me so proud of this little girl.

And friends?  Ha.  Lilly makes and keeps friends so much easier than the rest of us.  She is social, likeable, sweet, and funny.  It warms my heart to hear everyone at school love her, and the playdate invites are nonstop.  Every week I'm not even over exaggerating, she averages probably 3 playdates with different people.   Girls, boys, kids in her class, kids in other classes, kids in different grades, everyone wants to hang out with Lilly.  And the friends she makes often makes us friends in the parents of her friends, so it has definitely been the opposite of a lonely isolated experience.  (And this isn't even talking about the amazing community of families we've met that have children with DS or other special needs.)

Are things always easy?  No, but I wouldn't relate that to Down syndrome necessarily - I think being a parent generally is harder than I every pictured it to be - especially the pressure of doing it all and having it all.  I am both working and staying at home.  I need to volunteer for everything, cook healthy meals, keep the house clean, be responsible for my work which often has tight last minute deadlines, and teach the kids everything they need to be responsible, happy, health, well mannered and well behaved little kids.  And sometimes, they have an off day, or sometimes I do.  And Jon does help so much, but he's still the primary work-outside-the-house person, and works crazy hours.  Things are busy, crazy, but they're so worth it, and I wouldn't change anything about either child: Lilly's extra chromosome and Ben's extra sensitivity.  We're all exactly who we're supposed to be.  I just wish that - in the initial glimpse of information regarding Down syndrome showed a more clear picture of how beautiful our lives are.



Wednesday, February 13, 2013

Lent

Every year - for the past few years - I've given up Facebook for Lent.  There is something actually really nice, in my opinion, about stepping back, unplugging, disconnecting, and no longer knowing every little detail of everyone's life that they are sharing on there.  That being said, I love normally knowing these things: but the absence of it gives me time to reflect on my own life, time with the kids, time to spend with God, and just silence from the constant noise and feedback in my head that Facebook normally provides.

Last year, as I still updated my blog every so often during Lent, a few people criticized: you should give up everything - not just Facebook.  Or implying that I was selfish because I was still "plugged in" to this and not that. 

To me, Facebook is instant gratification, it is going on whenever you want, seeing everything everyone is posting, saying anything you want to get a response to, showing your own life - the good and the bad (which usually you get immediate support and feedback).  A blog is different - to me.  I'm not a professional or even quasi-decent blogger.  It started to record our year in New Zealand for myself primarily and our friends back home in the US.  And it continued, mostly, for me to memorialize Lilly's World for myself - to remember what it felt like when she started walking, to remember how happy she was at a birthday party, even to know my thoughts on this or that.  And Ben came along, and as much as I want to record those things for him as well, the busy-ness of life overcame us, so it's only been occasional for the past 9 months.  (Thankfully I missed Lilly's first 2 years - as far as blogging goes- as I started the blog right around her second birthday - so really I'm not so behind with Ben.)

So what I'm saying is, a blog isn't the showy immediate response Facebook world.  I don't have many readers, people rarely comment, it's more to remember Lilly and Ben and our life.  So that's my justification - as if I need a justification for what I give up for Lent.  Shouldn't that be my business, and God's?  And by the way, I'm giving up sweets and also want to write down each day the things I am grateful for and thank God for this long list of blessings He has given me.

Monday, October 8, 2012

The Moms

All moms are superheros, really.  Being a mom, you have a whole new respect for what your own mom has done, in raising you in a reasonable way, day after day, year after year, putting in insane amount of effort, love, ingenuity... Every minute is sometimes intense and you have to dig down to another level of patience.

But there's a group of moms that are especially amazing.  Through the past 6 years of being Lilly's mamma, we've gotten to know many other families that have kids with various needs, and I am in awe to be part of this group.  The moms of kids with Down syndrome, autism, cerebral palsy, physically delayed, intellectual disabilities, heart issues, multiple surgeries, seizure disorders, feeding issues, sleeping issues, and other disorders and disabilities.

It's not that we're better than other moms, or that our issues are necessarily harder than other moms who aren't dealing with the same things.  Because in a lot of ways, in my own situation, Lilly is so much easier than a "typically developing" child - she is pure fun, she is magic, she is easy going, she is a great companion - and her needs really aren't all that special most of the time.  But really, for us, and for those moms in this category of "special needs moms" the difficulty is in the complexity of what we deal with in our children's needs and the fact that we are the "off the beaten path" parents.  There are few guidebooks when we are dealing with various health needs, physical needs, emotional needs, mental needs. I think that is what is hardest - because there's no set "normal" way to do anything, and we are leading our kids and guiding our family's direction, so there is a lot of pressure on our shoulders to do it "right," and however we feel is most appropriate for our situation.

We love our kids as much or more - because the need it and because they just are amazing.  Our kids have incredible strength, perseverance, and they really do inspire us to keep on giving after we've exhausted all our efforts.  And not just in mental and physical energy, but we are constantly having to figure things out.  We read everything we can possibly read, talk to as many other parents who have been through what we are going through, and then we - after debating - often times throw away everything we've learned and go on our gut instinct on what is best for our own child.  As with any child, parenting is not a one size fit all package, so we really have to know our child and our family.  Even doctors and therapists can sometimes give us advice that we ignore based on our own judgment. 

And many times these moms are doing everything to provide the top support - and love - for their child, while juggling other kids, jobs/careers, and husbands with long hours.  Many of us don't live near family, or are dealing with tight household budgets - trying to find financial support to add a new therapy or something that may change our child's life.  We struggle with finding enough hours in the day. 

Recently a fellow kindergarten mom and I were talking, and I said how I was teaching Lilly so much outside school to make sure she stays up with everything - and she said "it's only kindergarten!"  And I just thought... you know, it's only kindergarten to you - your child learns typically and will learn this material no matter how it's presented in school, and whether or not you do anything outside of the classroom.  But for me - there is barely a moment where I'm not thinking of ways to help Lilly learn, grow, thrive.

And most of the time, we are not resentful, and we wouldn't change our situations or our children.  We - the moms of these kids with special, or different, needs, are in love with our children and just want to give them the amazing lives they are worthy of.  When I spend time with these moms, I am recharged by their energy.  God has entrusted us with such special gifts, and I am proud to be part of this great group of women.

Sunday, October 7, 2012

You've got a friend

Making friends isn't easy.  I'm always impressed by Lilly's ability to make true genuine friendships - it comes much easier to her than it does for most people.  I'm grateful, because my girl has confidence and she is surrounded by people who care about her.

As she's grown I've wondered how it might change at some point.  Because being the sweet funny adorable little girl who makes other people feel special is a great person to befriend, but what about when friendships get more complicated?

She's only 6, but so far so good.  The girls in her class are pretty verbal, and while Lilly talks a lot, she doesn't hold a candle to these chatty girls, and at times you can't understand everything she says.  But lately - in watching these friendships develop in playdates and seeing them in the mornings and afternoons at school - I notice it doesn't even matter.  The girls love Lilly.  They don't look at her in a negative way at all.  I think one thing she has in her favor at school is that it is a diverse school in many ways, even being private, so differences are celebrated. 

And the boys at school: Lilly does well with them because I don't think she's intimidating to them the way other girls are with them.  She's just fun loving and will jump into games and the way she's not hyperverbal the way other kindergarteners do, makes her an easy friend to have.  What you see is what you get.

Whatever the reason, I am grateful that Lilly has a variety of friends.  It is a huge relief knowing my girl can hold her own with her friends, with all their similarities and differences.  At some point I hope she will teach me a lesson with making friends so easily!


Saturday, October 6, 2012

Knock knock, who's there?

Since Lilly started Kindergarten, she has loved the morning routine.  Come into school, stand in line with her class (the entire school meets in the gym, lined up by class), morning announcements, prayers, pledge of allegiance, joke of the day, and finally walking out with her class to her classroom.

It's nice because, honestly, it could be a scary time for her - it is a little intimidating, and I know she feels it sometimes, but really she loves the routine and all the parts of it.  I get emotional almost daily, as I watch her recite her prayers while holding her hands perfectly together.

She loves to make announcements, and luckily the principal is generous with calling on her.  Most days it is just "Mommy and Ben are here today!"  (You'd think that would get old, since we're there every.single.day.)  But after her confidence with making frivolous announcements, she decided it was time to conquer the joke of the day.

There's a box at the front of the school where kids can submit their jokes.  A bunch of jokes in a box, one pulled out each day, and the lucky child is called up to recite their joke.  Lilly loves that they are called on, and come to the front for attention and laughter.  She was dying to tell her own joke.

The only problem was that we had to come up with a joke.  Lilly apparently came up with a funny joke which goes like this: "Q: What does a cow drink milk?" "A: Cow! hahaha"  Yeah, I didn't get it either, but Lilly apparently thought it was hilarious.  I tried to figure out a joke dealing with cows or milk since she really liked that kind of joke, but couldn't figure out a good one.  So I diverted her to a new kind of joke: the knock knock.

We practiced, literally, for a couple weeks.  Then one Monday morning I had her write it down.  The whole joke.  It took a whole piece of paper (she writes in very large kindergarten handwriting).  She was so proud of herself, and turned her joke in when we walked into school.  I warned her that she wouldn't get called on that day, it might take weeks.  However, my girl, full of faith and magic, stood at the front of her line that day (usually she prefers mid to back of the line), hoping that it would be her day.

Nope, not that Monday.  Tuesday, I downplayed it.  I told her it would probably be the next week, and to not be disappointed.  And, when it was time for the special joke of the day, the principal called... Lilly Sherman!  She went to the front, proudly, stood up tall while the principal made a couple last minute announcements, and finally she told her joke. 

Knock knock.
Who's there? the entire school responded
Boo.
Boo who?
Don't cry!

She was so proud of herself.  The entire gym laughed and clapped and enthusiastically responded to my girl.  Not because it was hilarious but because they love her and it is a cute little joke coming out of a 6 year old.  Lilly was on top of the world.

Since then she talks about that morning a lot.  It made a huge impression.  She felt important, and funny.  And her school makes such a big deal about making her an integral part of the school - not because of who she is or despite who she is, but just because she's a normal kid and they love her.  And we love this school that gives so much back to Lilly each day.