Friday, February 29, 2008

The Nilla Wafer Diaries

Ace turns 7 months today. A delightfully chubby baby with big apple cheeks which I so love to smother in kisses every day. Let's reminisce over the last month, shall we? It was all going so well. He was sleeping peacefully, awaking only once to nurse and then going straight back to sleep. We started solids and he enjoyed a wide array of foods...squash, peas, carrots, sweet potato, pears, peaches, rice cereal. I was amazed at his sophisticated palate, his complete pleasure in eating. He actually chewed the baby food like he was eating a tender fillet and cooed happy little sounds all the while.

Then he got sick...his first sickness. I thought this was the perfect photo to show how pitiful he was. That's a cool washcloth on his head, in case you can't tell. Anyway, I've heard a baby starts to lose the immunities gained from nursing at around 6 months and after experiencing all of this, I have to believe it's true. Night after night I ran up and down the stairs comforting, nursing, putting the binky back in, re-swaddling, until finally I surrendered and started sleeping in the bed next to his crib. Dare I admit I still swaddle him (I guess I already did) and he won't sleep without wearing the Velcro-closure, fleece straitjacket? Now he's strong enough to bust out, but like a prisoner finally set free, he can't make it on the outside and wants to return to what he knows. Swinging his free arms madly he starts his "Hey Mommy-lady, this is serious and you better listen to me and get up here and put my arms back in this straitjacket and I mean now!" cry. Turns out that anything you start that has to do with baby's sleep usually become a habit and then a curse if you ever want to stop it, i.e. binky, swaddle, nightlight and so on, especially with babies like Ace. He is showing himself to be not quite as adaptable as I once thought.

After finally getting over the cold, he got an ear infection, got better for a few days and then ran a fever for about a week. And so now we find ourselves a month later and peas and rice cereal are the only foods he will eat. He purses his lips tightly shut if offered any other food, even something super yummy like banana plum with rice (yummy, right?). Also, the act of actually feeding him has become trying in itself. This high-chair charade started after all the sickness...bobbing all around, trying to chew on the table, pulling the food-covered bib up over his face, putting his hands in his mouth while full of food and then spreading it all over his clothes.

He is waking up about 5 times a night crying until he is either nursed or given his pacifier. His two daytime naps are 45 minutes each. So you can only imagine the mess of a child he becomes around dinnertime. And the mess of a mom I dissolve into. Sure, we will get back on track. I know this without a doubt. I understand this shall pass and that he will only be a baby once and all the enjoy the moment sentiments, but nevertheless, these are hair-pulling, running-on-empty, eat a whole box of Nilla wafers and pass out kind of days for this mama.

Wednesday, February 27, 2008

I Love my Mailbox

It is common for people with Williams Syndrome to perseverate on certain favorite topics. Some examples I have heard about include sports, scary things and TV Guide. Weed eaters and vacuum cleaners can be favorites in the younger sect. Louie follows me around whenever I get out the Oreck. He has had one big obsession that actually interfered with everyday life. It was a plastic toy mailbox with a flower on top in his preschool classroom. He liked to bend the flower over, let go and watch it reflexively bounce back to an upright position. There was also a thing you could spin on the base; he enjoys spinning stuff too. The mailbox was the first thing he went to when we got to his classroom. He didn't want to stop playing with it for circle time or therapy. He quit napping. He didn't even want to go home with me when I went to pick him up. He wanted to be with his mailbox at all times, in all circumstances. His teacher said he looked longingly at it when she changed his diaper, like "oh mailbox, I can't wait to be close to you again." Louie's interests are limited and he is nonverbal but is not hard to recognize his happy places and interests.

The good news is that his receptive communication skills are far better than his expressive communication skills. He seems to understand many things we say. One gift we were given is that the first expressive language Louie understood and responded to was "Give me kisses". We ask for and receive many kisses every day.

Unfortunately for him, he seldom gets to do the things he would really like to do if left to his own devices...throw things, spin things, play with cause and effect toys (both appropriately and inappropriately), and eat rice cakes because he keeps a rather busy schedule with all of his therapies and interventions. And we try to engage him as much as possible. Anyway, I find these quirks and potential obsessions interesting and amusing. I have to. Otherwise I think it may break my heart.

I look forward to conversations with Louie on whatever his favorite topic may be. He will be three in June. Almost three years without a single word. Sometimes I sort of forget that he will speak actual words someday. The obvious is there is very little communication happening between us. We recently began using the picture communication system after realizing that sign language was not working. After trying to teach him signs for a year and a half with no real progress, we had to find a different route. The four signs he knows he uses indiscriminately and will do all of them together if he really wants something. Hub, Nana, myself...most people very close to Louie have had dreams where he talks and says random things like "Put that in the trashcan." I can tell he is just bursting at the seams to tell us what he wants, likes, questions. I wonder what his voice will sound like.

Monday, February 25, 2008

My Affair with D.V.R.

I haven't loved anything as much since the invention of the Internet. DVR has allowed me to actually watch a program start to finish which was virtually impossible with a newborn, I quickly discovered. Louie would start an inconsolable crying fit about ten minutes into Lost. Sadly, the rage I felt for missing my favorite television show was both electric and embarrassing. So along came DVR and happy days. No more commercials, no more crying interruptions and the beautiful, beautiful ability to pause and/or rewind live TV. For someone with a mild hearing loss in one ear and two children, it's lovely to say the least. Some may view my love for DVR with pity and I get where they are coming from. However, Louie is 2 years and Ace is 6 months, so these are the days of parenting when you seldom get out at night and you really look forward to Lost or I admit, American Idol. The writer's strike really did me in but that's another story. So, I had a small tiff with my DVR last night. We recorded the Oscars so we could fast forward through the things like 'best make-up' and 'best animated short' or whatever. The Oscars were slated to run from 7:30 - 10:30 so that's what DVR recorded. DVR isn't quite smart enough to figure out that the Oscars always run over. Right after the best actor nominees were announced it cut off. Errggh, DVR, what were you thinking? Oh, you don't think, that's right. But so often it seems you do. Thank goodness for youtube which allowed me to see the eloquent Daniel Day Lewis accept his Oscar for best actor. DVR, I still love you and have come to recognize and accept your shortcomings. After all, you can't be everything and no one is perfect.

Wednesday, February 20, 2008

The Notebook

You've heard it a million times...parenting is a thankless job. For those of us who feel words of affirmation are a necessity...those who grapple to find a compliment on a job well done, well, I guess parenting falls a bit flat in this area. No one is going to sit you down to tell you that you've done a good job diapering, meal planning, breastfeeding...but maybe you could use some work in the stain treatment arena and possibly a few pointers in play management...but you deserve a 10% raise. Yay you! Great job, congratulations, high-fives, way-to-goes! Nope. Okay, so certainly, somewhere there is a place I can really excel, maybe get someone to notice what a fine job I do. So I find myself making a notebook for Louie, who with special needs, comes complete with a bunch of paperwork. This is not any notebook. It's one of those 3" three-ring binders, I think they call it Super-Duty or something, anyway, it's nice. I have white dividers, and they have to be white, no colors thank you. And on the dividers, I have created labels on my handy-dandy label maker, "Medical Records", "IEPs", "PT evaluations", and on and on. I've organized the paperwork from earliest to latest by date. It's a beautiful, beautiful notebook. I take it to every meeting. I show it to people who do home visits. In one study we are a part of, I took my notebook so they could make copies of Louie's latest evaluations.
The graduate student responsible for making the copies commented "Wow, this is a really great notebook."
"Really?" I say, hopeful.
"Yes, one of the best I've seen in a while...a few years," she answers.
"A few years?" I ask gleefully. "Thank you, thank you so much!"

So there you have it. That, my friend, is desperation. Maybe it's just me, but I'm looking very, very hard for those small nuggets of positive reinforcement comparable to oxygen, to an overachiever, what-happened-to-my-6-month-review type such as myself.

Tuesday, February 19, 2008

Genetic Dice

Samuel's mother, from the documentary Including Samuel, talks about the thin line we walk between being a parent to a child with a disability and becoming his therapist. If we did everything the therapists and teachers recommended we would essentially become the child's therapist. I would prefer only being a mom but I also want to help Louie in whatever way I can. When raising a child with special needs, every day is filled with some form of at home therapy...the Wilbarger protocal sensory brushing, Nuk brushing, putting on his weighted vest in 40 minutes increments throughout the day, Floortime. Then there is putting on his braces, taking them off before nap, putting them back on after nap, trying to get him to walk with the walker and using the picture exchange system. The pictures are wonderful because they give Louie the opportunity to make a request by handing us the picture of what he wants. We keep everything, all toys, snacks, favorite books, everything, put away so he has to request each item. We encourage this constant interaction so he will see the benefit of communication which will in turn set the foundation for language. Let me emphasize, these are all the things we're supposed to be doing. We forget, we get discouraged, we get lazy. But in the end, when we see him accomplish the smallest of milestones, we celebrate. And it gives us the encouragement and the steam we need to step it up and keep going.

Our youngest, Ace, is typically developing but that is not without three months he rolled over but then stopped for about a week. Oh no! Regression! Autism? As with any parent, we are well-versed in worry. It comes with the job, hand-in-hand with guilt. Having a child is a leap of faith. As we consider having a third child we can't help but to ask ourselves if we should take the gamble and roll the genetic dice once more.

Monday, February 18, 2008

Paranoid Beginner Blogger

I suppose it's time I join the world of blogging. It seems so narcissistic to think others might want to read about the tiny details of my life but it's the tiny details that make life, right? Maybe blogging, as high-tech and silly as it initially seems actually provides us with a tool in which to examine our lives, to give us a wide-angle view of the day-to-day, to help us more fully feel the human experience via a high-tech form of journaling. For privacy's sake, I've changed my kids' names. Internet predators, stay away! Call me paranoid.