Thursday, February 26, 2009

Stalking on Valentine's Day

The Tank took me to a romantic Sunday brunch for Valentine's Day (hey, you gotta take what you can get when you need a babysitter). We traveled 45 minutes to an old Amish farmhouse that had been converted into a magnificent inn known for its weekend brunch menu. It was the first visit for both of us and I was excited to be on a date with my husband. No sooner were we seated at our cozy table by the window smelling drool-inducing homebaked muffins then The Tank told me to look over my left shoulder. I tried to be discreet and sneak a peek in the direction of his gaze. Lo and behold, there was a couple with their 20-something son dining together, talking about their recently-consumed food and obviously enjoying their time together. The son had Down syndrome.

I don't know why I become a stalker in these situations. Honestly with Caden being 3 1/2 you'd think I'd have grown out of this by now. But suddenly I couldn't focus on the menu or even on The Tank. I was obsessed with eavesdropping on this party's conversation and trying to spy on the young man's every move. I pictured that table as our little family in 20 years and that young man as my grown-up son.

We had just placed our orders with the waitress when the table of my obsession stood to leave. The mother left first while the father finished signing the credit card slip. The son turned to a somewhat surprised neighboring table and introduced himself. I hoped he'd approach us next but then the father had finished the bill and they both left the room. I was overcome with a desire to bolt to the window and watch them get in their car and drive away. I don't understand why and I don't know what I expected to see. But I managed to stay seated and eventually concentrate on our romantic morning get-away.

After our meal, I truly desired a yummy-sweet dessert. It was Valentine's Day after all but I had not planned properly. There was no room left in my stomach. I suggested to The Tank that we head home and maybe after that 45 minute drive had passed, we would be ready for dessert.

And so we were. We went to the best dessert-serving restaurant in town. I hadn't even removed my coat before I spotted the occupants of the booth two spots behind us: a couple with their 20-something daughter with Down syndrome. What is going on here? What are the odds? This time I was the one telling my husband to look over his shoulder.

They were preparing to leave. The father had given his daughter a beautiful bouquet and she carefully repackaged it to carry outside. As they left the building, she lovingly looped her arm through his. He patted her hand in acknowledgement and they both beamed happiness. And oh no, now I was crying. I felt guilty that we had left Caden with a sitter when these parents were so clearly relishing the time with their adult children.

We ordered our desserts and coffee while again I felt that we had been witnessing our future selves on Valentine's Day 2029. I couldn't wait to get home and hug my boy.There was no music playing in the restaurant but I could not shake a Bob Marley tune from my head: Don't worry about a thing, cause every little thing gonna be alright..

Friday, February 20, 2009

Goodbye, Corky



Caden lost his last remaining great-grandparent today, his great-grandfather and my paternal grandfather, known to all as Corky. He was a hard-working farmer and livestock trader who lived to be 94 years old. Caden loved playing in the stream at Corky's farm and riding his auntie's horses that were stabled there. I'm so glad they knew each other, if only for a few years. We love and miss you, Corky.

Wednesday, February 18, 2009

Adieu long hair!

First some background info: kids with Down syndrome have up to a 20 times greater chance of childhood leukemia than typical children. However they are also more likely to respond successfully to treatment than typical children. I know several online acquaintances and a couple real-life friends whose children have endured this additional diagnosis. I read their blog posts and see the photo's they post on various discussion boards. Through chemo and radiation and even after the loss of their hair, still these children smile. It is truly touching. So when I heard a local salon was holding a Cut-a-thon for Locks of Love, a non-profit organization that provides hairpieces to children suffering from medical hair loss, I signed up. Why not, I thought? My hair will grow back and what a great way to contribute to a fantastic cause.


Here are the before and after pictures of my hair from behind:








This was a really big deal for me. My mother is a hairdresser so no one else has ever cut my hair before and this was no mere trim. Here is the actual cutting off of the long ponytail donation as I ponder for a brief moment sprinting to the parking lot:

And here are the after photo's. It'll take some getting used to and I can say that the last 2 days I have not been able to get it to look like it did when I left the salon as I own NO hair product. A crazy realization considering my mother's occupation. But with long hair, I'd let it air dry and pull it up most days, no maintenance involved. Yesterday I woke up with my hair sticking out in every direction so those days are over. I can't shake the feeling that there is a bug on the back of my neck when the new short ends hit it. And I keep brushing my shoulder blades where my ghost hair feels like it should be. Then there's Caden's reaction as he keeps looking over my shoulder for the rest of my hair. But I'm sure we'll adjust soon. I just keep thinking about a child somewhere with no hair waiting on my wig and have no regrets whatsoever. And so, long hair that I've had for a decade, I bid you farewell and hope you bring much happiness to your new owner.









Tuesday, February 10, 2009

Up the Down staircase

I've noticed that Caden's development tends to come in big waves with long periods of rest in between. Just when I think he's plateaued, he surprises me with several big achievements at once. And he accomplishes them strongly with no doubt they've been mastered.

At Caden's one month checkup, the pediatrician seemed fine with the fact that Caden was already delayed in some of the very early developmental milestones. I knew I should be patient and accept Caden wherever he is but I also wanted some help. At the time we had not been referred to Early Intervention or any type of therapy. I felt like I was failing my son already.

"He's not smiling yet," I informed the doctor "Well, he kinda smiles when he has gas but that's it."

The doctor looked up from his examination of my baby to ask "And that's not good enough for you?" I could have died right there. I wanted to burst into tears and shrink away. I already felt like a bad mother and didn't need any more help in the inadequacy department, especially from a medical professional.

That night I did cry as I filled in The Tank about the visit. He had also been concerned about Caden not smiling yet and we both felt the doctor's comment as a punch in the gut. I thought we had been pushing for our son to reach higher goals but the pediatrician had made us feel like complainers and parents who would never be pleased instead. I remember standing in the kitchen holding my beautiful baby as we re-evaluated our expectations, tears streaming off my face.

And then Caden smiled. I couldn't believe what I had just seen and told The Tank to get beside me pronto. Sure enough our son smiled again. And again. And again. Suddenly my baby was all smiles. I couldn't get enough of it and we laughed till bedtime.

Caden's first time sitting up, standing, crawling, even walking all happened in a similar manner. We worked on it, waited for it, no results. Almost always he would perform said milestone within a day of me mentioning its absence to a doctor or therapist. It was as if he was waiting for me to make the comment so he could prove me wrong. And when he did conquer a feat, he did it like it he'd been doing it for months. He didn't take one or two steps when he first walked. He zoomed across the room.

One of Caden's current goals is to master steps. He can go up and down with assistance though without alternating legs. He prefers one leg to be in the lead. We have a small stoop under our front door and I have seen him go up and down that single step without assistance, meaning nothing to hold onto, only a handful of times. Bigger steps he looks for a handrail or resorts to crawling up. Forget going down unless he's got a firm grip on both sides. The Tank had recently asked me if I thought the physical therapist was making this enough of a priority in their sessions. Caden had been climbing steps with assistance for nearly 9 months now and it seemed he should be able to do it on his own by now.

Yesterday after I picked Caden up from school, we took the 2 flights of stairs down to the ground floor. He was holding the handrail in one hand, my hand in the other. He steps down each time with the left leg first. The usual MO. His classmates seem to speed past us as they rush out of the building. But I've learned patience and know Caden is doing the best he can. We'll get there when we get there.

Once we hit the parking lot, we make a right turn to go up a small flight of 5 stairs to a secondary lot. The main parking area had been full so I had to park along the side of the building. Caden spots our car up the small slope and takes off, letting go of my hand. Before I know it, he has climbed up all 5 stairs. No handrail, no assistance, no problem. I am jumping up and down with glee and don't care who sees me. I give my amazing son a high five and then much to his irritation, scoop him up for a big kiss. "I am so proud of you, Caden!" He looks up and signs "more". He wants more steps. He knows he's got it down now and wants to show off his new skill. And true to form, he ascends the stairs like he's been doing it since he could walk. Wait till The Tank sees this. I love when Caden makes us eat our words!

Friday, February 6, 2009

What Caden did at school today

It is hard for me as a mother to not know exactly what happens during Caden's school mornings. He tries to talk but his words are very mumbled so he relies mostly on sign language. When I pick him up, I always ask him what he did at school today but he has never been able to sign about past events, or future ones. His signing is usually descriptive about what is currently happening , or what he wants right now. I've tried to ask him "Did you paint today? Did you have fun today? Did you play with Katie today?" but he answers everything with an enthusiastic "Yeah!" I could be asking "Did you build a rocket ship today? Did you snack on caviar and Brie? Did you shoot lasers out your fingers?" and still I would get "Yeah!"

His typical preschool posts the daily events on a dry erase board but I always wonder how much Caden participated. Did he really eat marshmallows? The special education preschool sends home a check list on what activities he performed and which classmates he played with but there are no descriptives. When it says they built a class snowman, I'm certain they weren't outside in the snow. What does "class snowman" mean? I've usually calmed my trepidation with the knowledge that whatever Caden does at his schools, he loves it. He is very excited to go to either facility. That must do.

When I picked him up this morning and as I zipped up his coat, I did the standard "What did you do at school today? Did you have fun?" To my surprise, Caden signed "sleep" and pointed to one of his fellow classmates.

"Oh, was she sleeping?" I ask. Caden points to himself and again signs "sleep".

"So you were both sleeping?" I question.

"Yeah!" he exclaims. They don't do nap time at this school. Maybe it was part of a story or special activity. Maybe he's just being silly. I turn to the classmate.

"Were you sleeping?" She smiles and nods her head. Then we are approached by the little girl that gave Caden a piece of her artwork last week. She wants to hug him goodbye. Caden does the same pointing to her and himself while signing "sleep." This second girl also confirms that they were sleeping. Now I must know what happened. Caden has never spontaneously told me about his school day. Is he actually telling me about something they did or merely making up a story? I re-enter the classroom and approach the teacher.

"Were they pretending to sleep today?" I ask her. She looks a little puzzled at first and then recalls that Caden was under the table with 3 of his female classmates. She thought they were pretending to camp but they must have been pretending to sleep. "What a smart boy!" she says and gives him a big hug. I feel nothing short of blown away.

Later when I recount the story, The Tank is proud of his son's Casanova stylings in being under the table with 3 girls. But I am less impressed with what Caden did at school today compared to what he learned.

Thursday, February 5, 2009

Today Show tissue-grabber

http://today.msnbc.msn.com/id/26184891/vp/29030653#29030653

Watch the video called "Player with Down Syndrome wows fans". Man, I would give anything for Caden to have an experience and friends like this in high school.