Friday, May 28, 2010

Birthday Party Anxiety Part 87-or-So (or "The Greasy Rat")

Amazingly, I’m not referring to Samantha’s upcoming birthday party this Sunday, although I will say that has been its own source of anxiety (for reasons that I will not bore you with here). No, I’m talking about the party of a classmate. Coming soon to a Chuck E. Cheese near us.

Now do you get what I’m talking about?

I’ve been sitting on the invitation for weeks, debating the pros and cons, but keep coming up with far more cons. Like germs, for one. Don’t people have their own little pet names for that place with the word “germ” placed prominently in the title? I’ve actually never been there, but I picture a chaotic, louder, more crowded, grimier version of Dave & Busters, where I have been…once. I picture a place where children’s greasy fingerprints obscure video game screens and wet bottoms have left their marks on chairs and the backs of horses on mini-merry-go-rounds. Where a single cough gets lifted on water droplets into the humid air and wafts in slow-motion, spreading silently, to settle gently into the nostrils of healthy, breathing children. Where picked noses and scratched bums abound, unwashed hands touching oh-so-touchable buttons and toys. Yep, germs are the biggest con.

Then there’s the issue of my developmentally-delayed child with somewhat questionable environmentally-appropriate behavior and an even more questionable attention span. Do I really picture her participating and having a good time there? I’m also concerned about trying to keep track of her amidst the chaos. And what happens when she decides she wants to push the fun, flashing buttons on a game that another child is playing and has a meltdown because I am busy prying her little fingers off while she screams “no!” Am I worried for nothing? I keep thinking that she just wouldn’t know how to act in a place like this, and think that she should probably be a little older before I attempt it. To be honest, I really don’t know what’s inside a Chuck E. Cheese. But I remember how much she didn’t want to participate in the activities at the last two birthday parties she attended (was that my fault for telling her there’d be pizza and cake?), and am now convinced it’ll happen again. Maybe I’ll skip the pizza/cake conversation this time…

I could be way off-base. I could be totally underestimating my child (again).  I could just lighten up and give her the chance to have fun with her peers.  I think I might be being a bit unfair here.  I just love how blogging brings me full-circle on issues sometimes, just by virtue of the magical way thoughts in my head spill out into letters on a computer screen.  *sigh*


Monday, May 24, 2010

Another Important Relationship in Sammi's Life

There is certainly no love lacking between Sammi and her home aide, N. While we had been uncertain about her in the beginning due to several factors, not the least of which was a pretty big language barrier, it is obvious that having her with us has made a tremendous impact on Samantha, and Samantha a tremendous impact on her.

In her native country, N. was an educator. Her approach to Samantha goes well beyond babysitting, and she takes every opportunity (or at least those moments when Sammi is not trying her best to walk all over her) to teach her things. So many times I’ve walked into the living room to see them reading books or practicing with flashcards, and Steve has found them out taking walks or working on ascending the climber at the school playground behind our house. She truly sees Sammi’s potential, often commenting on how smart she is and how quickly she picks things up. One day, recently, N. was practically bursting at the seams to tell me about something my princess did when they were playing together in her room. Samantha likes to lay her color stacking cups out on the floor, then hide a little ball under one of them. She tells you to close your eyes, then she moves the cups around and makes you find the ball. It’s obvious and simple, and she thinks you’re having to work very hard to deduce where it might be lurking. Well, on this particular day, Sammi told N. to hide her eyes, then moved the ball from under its current cup to a different cup, then told N. to open her eyes again. N. was almost in tears with happiness when she recounted this, noting the cognitive breakthrough that allowed Sammi to understand deception (of course, I haven’t been able to get Sammi to repeat that particular game since…). I knew then just how much N. cares and how much she’s invested in my little girl.

It goes both ways. When N. isn’t around, Sammi mentions her often, particularly when calling either Steve or myself by her name. She does this slyly, knowing full-well what she’s doing and the reaction she’ll get (it’s the same as when she calls Daddy “Mommy” or Mommy “Daddy,” just to be silly). She expects N. to be there when she wakes up from her after-school naps, since that’s the usual routine, and when she’s not…well, let’s just say that she’s not very happy about it. Last Sunday, after waking from her nap, still shut in her room (oh yes, we've got a child-proof doorknob on her side!), she ran to her door and loudly yelled for N. over and over. I came to the door to tell her it was me, and that N. would be there the next day. When I opened the door, she yelled, “No!” and slammed it shut, then asked for N. again. And she was quite serious. Breaking the ice and warming her up again involved the two of us, on opposite sides of the door, lying on the floor peeking at the other’s eye through the crack under the door. She giggled and let me come in then.

We feel quite lucky to have this relationship that works. I’m a little bit worried because I think N. is going to be going back to school to get her certification here in the US this fall, and we may lose her and have to go through this process of finding the right person again. But I’ll be thankful for the time that we do have, and thankful for this other special person in Samantha’s life.

Thursday, May 20, 2010

Preschool Rant (Probably to be the First of Many...)

Today I experienced a very unfamiliar pang. One that I know I will feel again and again, as we begin to turn a corner in Samantha’s schooling. I think I should have always known it was coming, but ignorance can truly be bliss for me. I felt it not once, but twice today. It was the feeling that all will not necessarily be right with the world for Samantha. She will not be able to just waltz in anywhere and use her charms to get whatever she wants. She will not be afforded every opportunity presented to typically-developing children/teens/adults. She will be denied. She will be looked upon as lacking. As a mother, these slaps of reality do not sit well. They bring up anxiety and fear, and most of all, anger. Anger at injustices. Anger at prejudices and ignorance. Anger at exclusion.

Now, I have not actually spoken to either of the people that angered me today. But I can imagine what they’re thinking. Actually, when I imagine what they’re thinking, I start to realize that they may just be feeling fear. They don’t necessarily know what to do, how things are, how to react. And I guess I can’t fault them for that.

We’re looking into supplementing Samantha’s special education preschool in the public school system with private preschool, putting her into public three days a week, and in private, two. The next school year is incredibly important for her, as it will be her final preparation for entry into Kindergarten. I want her to get more exposure to her typically-developing peers so she can be better-prepared socially for the transition. As such, we’ve begun to look into some of the preschool programs available to us. We’re fairly specific about when we want her in the typical class (morning sessions, two days a week), so I’ve begun to send feelers out to some of the preschools to see who offers that kind of program.

Steve spoke to one woman this morning who was very quick to point out that she’s “not a special education teacher!” He calmly and emphatically told her that that’s exactly the point. She kept repeating it, I guess thinking that perhaps he wasn’t understanding her, and he again made his point, trying to explain our situation. Her reaction both angers and concerns me. There are plenty of children with special needs of all sorts that go to typical preschools. Is she that green as a teacher that perhaps she has never had the experience of a “special” child in her class? Is she just afraid? Or was she trying to discourage us due to innate prejudices?

I sent out some e-mails inquiring about the programs at several of the local preschools. I got one reply stating that they don’t do a 2-day-per-week morning program (just 3 or 5), and that “Due to the ratios and the academic nature of our classrooms, we also usually do not take children with special needs.” Hmph. I guess I should have expected to see that at some point. But I had only stated that Sammi was in the special education preschool in the public school system, not specifying why. There are a lot of children in her class that just have speech delays, no real special needs. Is the assumption generally that children in special ed automatically have special needs? I guess to an outsider it would...? And maybe I should just admit that she’s right to deny her, given the student-to-teacher ratio, but I’m a bit offended all the same.

Okay, rant over. Back to regularly scheduled programming.

Monday, May 17, 2010

Making Lasting Impressions

Our kids just kind of have that effect on people.  Without even trying.  They just get in there, grab the heart strings of strangers, and leave them to wonder how this little person could have made them feel the way they did in such a short time.  Maybe I'm romanticizing these interactions a bit, but I like to think this is how it works.  I have never, in the 4 years of Sammi's existence so far, ever, received a negative reaction from a stranger (or someone I know, for that matter) about her having Ds.  I have never received anything but the positive.  No stares of pity or disgust, no unwelcomed comments, nothing.  I'm sure open to the idea that those may come some day, and I'm sure I'll be left speechless, coming up with my witty retort minutes later, when the person has gone, and wishing I'd had the guts to think on my feet.  I feel fortunate to have had such support (silent or otherwise) from the general public so far, and to be honest, I don't really care what one ignoramus may think (although that's not to say it wouldn't hurt).

Our trip to England started out in the Virgin Atlantic departure lounge at Dulles Airport.  Sammi was in good spirits, but we were having a hard time keeping her occupied without multiple ventures out and about, walking the terminal.  One of the members of Virgin's gate crew, an attractive older woman in her pressed red VA uniform whose name escapes me now, zeroed in on Samantha and came over to talk to her.  She spent the next half an hour or so talking and reading to her, allowing us a little bit of time to get ourselves together in advance of our impending flight.  Samantha was enthralled by her, and the woman seemed to be just as entranced.  When it came time for her to go back to her post and prepare for boarding, she asked Samantha for a hug (willingly provided) and thanked us, in the most sincere and heartfelt way, for sharing Sammi with her.  It was a good feeling.

Two days later, while shopping at Marks & Spencer within the walls of ancient York, we wandered into the children's bedding section, where I was in search of a twin duvet cover for Sammi's room (now to find a lightweight twin quilt/duvet in the same dimensions...).  The only other people in that area were a woman, her young son, and her teenaged daughter in a wheelchair.  I realized, at about the same time that Steve nudged me, that the daughter had Down syndrome.  Okay, so it was one of those moments that people blog about again and again where they think of all the things they wanted to say after the fact.  Yep, this time, too.  The mother even stopped when she saw Samantha, leaned down to her in her stroller, and commented how beautiful she is and asked her age.  So, uh, why couldn't I speak, other than to respond to her query?  Why do we, as parents of children with disabilities, still have such a hard time facing others' disabilities?  Was it because the daughter was older and I wanted to know why she was in a wheelchair but was afraid to ask?  Was it because I didn't want to take up too much of her time?  What I really wanted to say to that mother was, "We both have exceptionally beautiful children."  Because we do.  I always view other children with Ds as exceptionally beautiful.  That extra chromosome is certainly an enhancement, especially in the creation of such purity and honesty, something that often lacks in people generally.

Thursday, May 13, 2010

Sammi, the Intrepid World Traveller

Samantha has now travelled by plane out of the country for the second time.  I know this may not be much by some people's standards, but I remember when I was a kid, all I wanted to do was to travel to another country.  I would watch The Price is Right with rapt attention, hoping against hope that the Showcase Showdown would be one with lots of trips, rather than refrigerators or dining sets.  I mean, what the heck is Broyhill anyway, other than something old fogies furnished their boring, stuffy houses with?  Right?  (Oh, how times have changed - I'd LOVE to get my hands on some of that Broyhill furniture now, to hell with the trips...).  When I was 11, I got my wish.  My father and I flew to Ireland to visit my cousins who were living there at the time due to my uncle's job.  My father stayed for a week or two, while I stayed on for a month, flying home alone.  When the woman sitting next to me on the plane on the return trip pulled out her rosary and started saying prayers before the plane took off, I started to re-think my eariler travel excitement, wondering if perhaps this may have been a bad idea after all. 

Last week's vacation to England contained some pretty colorful stories to tell.  Which I can't tell here, unfortunately.  It really is a bummer to have to edit blog posts, but at the risk of not knowing who is reading and at the risk of offending said parties, I will abstain.  But trust me, there was an awful lot to tell, from hysterical and almost unbelievable conversations between the casts of characters to the usual drama that unfolds when too many family members get together in one place at one time.  But I'll keep it straightforward, just saying that we visited lots of people, drove a lot, and had a hard time keeping Samantha entertained. 

She was soooo good, I have to say.  I was so impressed with her flexibility.  Here are some of the highlights:
     *Samantha had just gotten over being sick with a cold, strep and an ear infection, so we knew we may have some challenges ahead of us
     *She slept almost the whole trip there
     *She didn't eat much in the first few days, probably due to feeling a bit icky still from being sick, but she didn't complain, and she slept like a champ in strange beds.  She developed a nasty little cough that she still has, and for which I will be taking her to the doctor this evening
     *I still had a ton of chest congestion from a cold (which I'm on steroids for now after a visit to the doctor yesterday), so I wasn't quite up to snuff, either
     *Steve managed to get a cold in the last couple of days, so he ended up sick, too
     *Once her appetite returned, Samantha discovered a love of English sausages
     *She stayed dry the entire trip!!!  I'm still in shock.  The only time she had wet nappies was when she was sleeping, and two accidents on the plane ride home!
     *We had a hell of a return trip home, and ended up on the plane for 12 hours.  The flight was supposed to be 8 hours, but an extra hour was tagged on due to the necessity of flying up through Scotland to bypass the Infamous Icelandic Volcanic Ash Cloud.  The backlog of flights trying to fly through Scottish air space was so great that we were stuck on the ground (in the plane) for an extra two hours waiting for permission to take off.  Add to that the fact that the air conditioning on the plane wasn't turned on until we began to taxi, so they actually opened a back door to give us something resembling oxygen to breathe.
     *I left my leather coat on the plane in the overhead compartment.  Not a terrible tragedy, as I've had it for years and the lining was all ripped out, the buttons have all fallen off, and there are just holes to nowhere where the pockets once were.  Good excuse to get a new one...
     *Sammi (and we) visited many family members, each more colorful than the last.  Here they are, in no particular order:  Nana, Granddad, Uncle Keith, Auntie Jeanette, Grandma, Auntie Kaz, Uncle David, cousin Olly, cousin George, Auntie Bernie, Uncle Wall, Auntie Betty, and Auntie Mag. 

I quite like driving in England.  I have done it for nearly 20 years, and have no real reservations about driving on the other side of the road/car.  Steve's a great navigator, and always keeps me off the curb.  Now with the advent of GPS (SatNav to those of you in the UK), getting around is even easier ("Stay right.  At the roundabout, turn right, 3rd exit" - how can you miss?). 

We started out in York, several hours north of London.  Driving that distance after having flown for 7 hours and missing a full night's sleep is a bit of a challenge, but several cups of coffee and a few bags of crisps later, we finally arrived at Nana (Steve's mother) and Granddad's (Steve's step-father) house, where we spent the next 4 days trying to keep a very spoiled and very crazy calico cat from her true purpose of causing Samantha severe bodily harm.  Nothing happened, but on a couple of occasions I managed to grab Samantha in the nick of time before the hissing, spitting creature launched itself at her head. York's an amazing city.  I've included a couple photos of it below, but will post the rest on Flickr in the next few days.  Ancient and beautiful, a mixture of the old and the new in stark contrast to each other. 

We then went to Rugby for a few days before returning home, to stay with Grandma (Steve's step-mother) and her little Schnauzer, Izzy.   In contrast to our feline experience, Izzy was sweet, amiable and patient, with a love of small children.  Sammi was quite taken with her, and tried to play with her using the contents of her toy doctor's kit.  Izzy discovered that mealtime was a real treat when Sammi's fork got passed down to her for a lick.

Below are some pics, in no real order...

The fountain in York  ("Beautiful water," Sammi said)

On Daddy's shoulders.

I can do no wrong!

With Auntie Caz

Taking some time to play

Steve, with his usual cheer, in front of York Minster

Sammi & Izzy

Good girl on the airplane

The usual airplane mess (is there any way around this with a child?)

Another shot of York Minster

On Daddy's shoulders

The Shambles, York

Monday, May 3, 2010

Out of Touch

I've been a wee bit out of touch for the last week or so.  Between the general demands of a generally demanding week at work and being sick with strep(?)/cold/sinus infection/cough, the thought of doing much other than exactly what I absolutely had to do, was just too much.  And getting mentally ready for our trip out of the country tomorrow has been pretty taxing, too.  I say getting mentally ready because we haven't yet started to pack.  I've made lists, I've done laundry, I've thought about the things we have to do, but I think it's all going to come down to the mad dash between tonight and tomorrow morning. 

Actually, we didn't even think we'd be able to go until today, thanks to some poorly-timed illness on Samantha's part, too.  She had a cold last week, but managed to smile through it.  As a matter of fact, she actually seemed happier and more energetic while she had that cold that she'd been before she got it!  Knowing her track record for the last few months with ear infections (after 3 1/2 years of no ear infections, she seems to have begun to get them every time she gets a cold lately), we decided to be proactive and take her to the doctor on Thursday to make sure she didn't have one.  And guess what?  Yep, she sure did.  So this time the doctor decided to put her on a 4-week antibiotic (don't ask me which one, I never keep track of that stuff) to really clear her out, in the thought that all of her infections are just the same one from January, coming back to haunt us.  No sooner did she begin that med when she began to get whiny and lethargic.  On Sunday she got a fever.  We couldn't believe that something was outlasting 3 days of antibiotics, so after 3 hours in Urgent Care and a throat swab later, Samantha tested positive for Strep.  Sheesh.  This is her first experience with that, too, of course.  So, a quick scratch of a pen on a prescription pad, and a new antibiotic to replace the old one was presented.  After a rough night, she slept very comfortably and peacefully long into the morning and woke up a new girl.  Happy and playing, and happily (although gingerly) munching a cookie (first food in a while). 

A well-placed call to Virgin Atlantic before she transformed herself this morning told Steve that to re-schedule our trip due to illness, they would not charge us a change fee if we could present a letter from the doctor stating that Samantha isn't fit to fly tomorrow.  He was also told (now that he'd told them who we are and explained to them about Samantha's ear infection) that we'd now have to present a letter from her doctor stating that she is fit to fly tomorrow.  So it's off to the pediatrician in the morning for full confirmation, one way or the other. 

Now if only I can clear my head of gunk so I don't burst during take-off or landing...

So, we'll be pretty much out of touch for the next week.  I won't have computer or phone access while I'm gone, other than at a few random intervals.  I'm already anticipating feeling lost without them.  I guess I can just try to feel like a pioneer, much like I'll be expecting Samantha to feel without her beloved Caillou, Dora or Max and Ruby at the click of the DVR button.  I know she'll ask for them, too, and how much guilt will I feel??  I'll miss all the blogs I read regularly, and will be thinking good thoughts for those that need them. 

Bye for now!