Sunday, October 21, 2007

Birthdays, Tics, and Tremors, Oh My....

Leo turned 9 this week, his party was today. He loved getting his name announced on the loudspeaker at school and bringing in GFCF cupcakes. Fruit wouldn't fly this year, I am the fruit pusher. When I asked him what he wanted to bring, he at first named things that I knew he didn't like (like chocolate). He said, "But my friends like that kind of stuff." What a sweet boy, thinking of them when it's his day. He's so over-programed after years of NOT eating what they eat.

After negotiating a happy medium, "healthy" cupcakes, he was happy with all vanilla with vanilla frosting.

I asked how his friends liked them, for years they have passed even the most discriminating eaters, as I always apply generous amounts of frosting. He said, "I warned them Mom." But, warning aside, he said everyone liked them, just like previous years. And Leo was considerate in reminding me to leave one cupcake frosting-free for one of his friends.

We listened to all his birthday messages from his cousins, aunts and uncles, and grandmas. It brought tears to his eyes! A good birthday. A big weekend - a sleep-over with 14 boys for a friend's birthday, his last baseball game, and I hadn't a care in the world. I am beyond grateful.

I am happy to report that Leo has had a super year so far. He's got a wonderful teacher that is upbeat and seems to "live" for teaching. And no issues so far. He's learning a lot, and his new knowledge is really obvious. His teacher reports that he's a "delightful" boy with a lot of enthusiasm. He's learning cursive and actually likes it. Fine motor? Really? He's looking forward to learning more letters so he can write more words. He hangs out with different kids this year at recess - the baseball kids, but when it's rainy and there's indoor recess, he's back with his old best pal from kindergarten. I love this of course. He also likes to play wall ball.

He also sat next to his old best pal at his birthday party. His cousin on the other side. Very sweet! He's part of the nerd herd, in the top math class. He loves math, not a surprise. I look forward (sort of) to Parent/Teacher conferences. I wonder what she'll say - Leo reports he does talk-out-of-turn, but isn't sure if he does it less than last year. We'll see, but that's not what's on my mind. I'm thinking about testing. How will he test? Will he be able to demonstrate what he knows? Or will there be a gap? A processing issue? Untimed tests? A big year.

As I had mentioned, my daughter Sydney had been presenting minor tics (blinking and grimacing). After 3 days on the new protocol, she was tic free. I was elated. So quick! Temporarily, as one week later, Leo began blinking, and most distressing to me, presenting with something like strabismus. His eyeballs would roll horizontally back and forth, mostly to the right. I began feeling a bit P.T.S.S., but got myself together and immediately put together a protocol similar to my daughter's. As a birthday gift to me, Leo woke up on his birthday symptom-free. Yay!

Both were symptom-free for a couple weeks until I ran out of some of the enzyme. Then the tics appeared, minor, but were present especially around bedtime. I feel like I'm waiting for a million dollars to arrive (the enzymes). I'll be blogging about the cause of these tics soon....but in a nutshell, this is a symptom of strep. So when strep goes around as it indeed does, this is how it manifests in my children. No sore throat, no fever, no traditional illness.

I felt like a gift was laid upon my lap, I got an email from a mom of a 15 year old recovered boy. Merry Christmas early! I was so happy to hear from a mom of a child that is older than mine that is doing so well, and more importantly, happy. She wrote a passage titled "Then" which brought me back to when Leo was little. Perfect timing, as I always reflect back around Leo's birthday, as that's when he was diagnosed on his 2nd.

Artemisia got me thinking about Leo as a tiny baby:

I was really excited when I got pregnant. I was adopted later in life (thankfully), so I had always looked forward to a point where I'd have my own naturally family. When Leo began having small tremors following nursing at 2 months old, I was the only one that didn't think it was right. An infant shouldn't be having tremors, my instinct told me. I remember the pediatrician telling me it was probably nothing, but when pressed he referred me to a neurologist. I was so embarrassed, a new mom, sweaty, feeling awkward, nursing in front of him in his cold office. Did I mention I have giant breasts? Even before I was pregnant? Thank god I had the company of my husband. I got through it.

The neurologist dismissed them as nothing, and told me to go on with life and if things worsen, to let them know. Things didn’t worsen, but they stayed the same. That was bad enough. I dreaded the end of a feeding, looking down for any stir and followed by the familiar jittery movements. As tiny as they were, they seemed so huge that they took up the room.

Do nothing? Their words didn’t ring true to me. Everyone told me to believe the doctors. This is the Big Apple after all. Who am I, an insecure first-time mom, to question them?

By the time Leo was 4 months, severe separation anxiety kicked in. I couldn’t put him down for a second. Literally. I was so distressed. What was I thinking? I can’t do this, this whole mom thing. I must be doing something wrong and I have to get to the bottom of it. Leo had to be constantly held, he nursed EVERY hour just one side, and I couldn’t leave him in the care of anyone but my husband.

We babysat my friend’s baby that was just a few days older with no hiccups. This was the big plan, trading date nights so us new parents can get out. The baby was sweet, calm, and aloud me to put him down under the play mat. Adorable. We took lots of pictures of Leo’s first friend.

When it was our turn for a night out, I was filled with anxiety. I knew this may not work, but I had to try. Everyone told me that we just needed practice. That’s all, just practice. The family came over, excited about the prospect of extra responsibility. I didn’t know what to do. I felt like a deer in the headlights. In the arms of strangers, my screaming infant was so wound up he threw up. Embarrassed, I let my new mommy friend go home, pretending that we’d try another time. My hope for a new social circle went out that door too. I hung up my newly purchased post-pregnancy duds in the closet, knowing I may not see those puppies for a while. I knew something was different about my son, and I hoped that this ‘high maintenance’ stuff would eventually fade. No one seemed concerned. “All babies are different, everything is normal for a baby” is what I was told.

I watched while other moms seemed to move forward into the next phase, life with a baby. I stayed home far more than I ever expected with my baby I couldn’t leave. Leo had a sleep schedule that began with him waking at noon and going to bed at midnight. I tried tinkering with this, but regardless of what cruel things people suggested I do with a 4 month old, I stuck with my gut. Half the day was over for my new mommy friends before I left my apartment. I looked forward to my weekly ‘play dates’ with the other moms until I got a comment about Leo’s lack of expression. I got very upset but kept it to myself. The pediatrician continued to tell me that everything was normal, even when I told him I was concerned about his head control. Of course, we discovered later Leo had hypotonia and overall weakness.

In my new house in the suburbs, the isolation continued. Failed attempts with babysitters kept me at home with Leo rather than going back to work. One babysitter worked out if I left just for an hour. She was getting a degree in Early Childhood and wasn’t concerned either.

About a year later I began the search for what was 'wrong' with my baby, finally taking ownership of his wellness (and mine). After I self-diagnosed him, the rest is history, history we've all made. That was a long time ago, almost 9 years ago that my journey began.

My story is no different than thousands of moms out there. But we survive.

We figure it out.


Mom without a manual said...

Thanks for sharing your story. I agree. It was hard to "take ownership" of our wellness but it was a critical piece for us as well.

No doubt about it. Leo is doing fantastic!

Ashley loves Leo said...

Thanks MWOM! Us moms aren't "just moms".

Artemisia said...

Oh wow, I made your blog. Yay me!

Yes, we definitely had the same experience - the deep nervousness that something is just not right, the gut feeling we just can't shake, that doesn't go awake when the doctor brushes it off. The creeping isolation from all the other moms, who are gradually relaxing and trading babysitting...

I shiver just thinking about it.

At the same time, I'm thankful that we - and similar parents - didn't shrug and say, "oh well, the doctor's right." After all, we are ultimately responsible for our children's wellbeing. When our children are teenagers (yes - it happens! Still can't believe it) that doctor may or may not remember the child or the advice, but we and our child live with the consequences of our choices every single day of our lives.

Great post, Ashley!

Ashley loves Leo said...

Thanks Artemisia. And hopefully youwon't get any hate mail! ha I'm learning so much reading your blog. The post about the teens and the movie gave me chills. I'll forever take things personally like that. That's what Autism does I suppose.