Thursday, April 21, 2011

And Sometimes, I Just Need To Write . . .

I haven't written because I've been . . . sort of a mess of emotions these days. Sam's speech, as I said before, has just taken off. New words daily. And, she's willing to repeat everything we ask her to say (and, um, things we don't ask her too . . . like "damn it," which she said to her nanny; when her nanny asked "where did you hear that?," she said, "mama."). I'm so so proud of her speech, and thrilled with the doors it is opening for us. Sometimes, it still takes some encouragement for her to verbalize, but it is so much fun to come home from work and ask her about her day. Yesterday, she went to the zoo with her nanny, and when I asked her what she did, she said "doo." And, I said, "what did you see?," and she said "Animals." I love it. Love it. She's telling us what she wants to do (and doesn't want to do) and clearly showing she has a mind of her own. And this is so so encouraging and exciting. So exciting. I love Sammie B's voice.

But, on the motor skills front, I've been discouraged. I know peaks and plateaus are just part of this journey, and I wish the plateaus didn't worry me so. But they do. The thing is, we aren't even really AT a plateau . . . new things ARE happening, they are just tiny, tiny inchstones. Lots more scootching around on the floor; she's figured out how to turn herself in any direction to get herself aimed at whatever she wants to scootch toward, etc. Her motivation to move IS THERE. All very encouraging, but yet, I find myself feeling discouraged. Discouraged that she has to work so stinking hard for these inchstones. Discouraged that we've been at this therapy business for nearly two years, and that independent walking still feels so far away. Discouraged, defeated, scared. And, I hate it. I hate that I bottle this up, afraid to admit that I feel "discouraged." That I don't want to utter THAT word to anyone. Not B. Not my mom. Not any of the people I usually disclose my inner most feelings to. This feeling -- discouraged -- hits me in the hardest ways (when it hits) and makes me withdraw from everything, even my little blog world.

And, when I think of my blog, and the words I type here, I can't help but envision a twenty or thirty-year old Sammie B reading it, and I wonder what she would think. I would never, ever, ever want her to feel that I was discouraged by her. That her progress wasn't enough for me. She works harder than any toddler should ever ever have to . . . in her SEVEN therapy appointments a week. She amazes me and inspires me on a daily basis. Nothing about HER discourages me . . . it is just THIS. This experience. The appointments. The therapies. The hard work. Her trying so stinking hard to stand, to take steps, and the fact that it is still so hard. I hate it. And, I'd gladly give up my own legs if it meant things could come easily to her.

So, that's where I've been. Hiding. Wallowing in these feelings, and hating them.

And, then there's PT. Sammie B has hit a "no" phase in PT. She doesn't want to do it, and she makes it known. When the PT tries to get her to do anything, she says "no," and flatly refuses, making spaghetti legs so that we can't even make her do anything. I KNOW this is "typical" two-year old behavior, and trust me, that THRILLS me. But, at the same time, I've been at a loss, the PT has been at a loss (which in itself is a little discouraging . . . she's a pediatric PT for goodness sake; she should be able to handle two-year old defiance). Monday, I suggested meeting for PT at the park - the same park we'd gone to on Saturday where Sammie B had a blast, "walked" all over the structure with our assistance, and kept begging for more. I thought it would be a perfect way to shake up the PT routine. But, no. Lots of "no" and lots of spaghetti legs. I left that session and went home feeling . . . defeated. And hating it.

I posted on my Delayed Darlings board and got TONS of great feedback and encouragement. Ideas. (Frankly, ideas the PT should be coming up with on her own). I'm going to sit down and write a long email to the PT with my ideas . . . that it is so important that WE never act discouraged or defeated. That "no" and spaghetti legs doesn't draw the "here we go again" look from the PT (which it has, and that makes me a bit angry). That we start trying a system of rewards for hard work, bribery, giving Sam more choices, etc. Things that I realized, our other therapists already do. And, Sam does better with those other therapists. [Now, in our PT's defense; Sam also probably does better in OT and ST because those skills are NOT as hard for her and because there's so many different ways to work on some of those skills; whereas the PT skills are a little harder to work on in a variety of ways, if that makes sense].

One mom on my board said that her developmental pediatrician said for kids with ambulatory delays, giving them a CHOICE in activities becomes even more important because their choices are otherwise naturally limited by their (im)mobility. Makes sense, right?! So, we have to work harder to let Sammie B make choices in PT. To feel rewarded when she works hard. Because she works so so hard. And, how frustrating it must be to work so hard and have her little body still not working the way she wants it to. No wonder she looks at the PT and squarely says "no."

After that Monday of feeling defeated and worried, I had a fitful night of sleep, and woke up early Tuesday morning, before Sammie B was awake. I went into her room, crawled into her bed, she opened her eyes just long enough to look at me, smile, and grab my arm and snuggle closer and she went back to sleep. I just laid there, watching her sleep, thinking. And in the hour that I laid there, I had some very important "ah hah" moments.

I realized that no matter what sense of panic or urgency I feel about independent walking . . . it won't make it happen any faster. She's going to do things on.her.own.time.

I realized that while she may be refusing to walk assisted in PT, she's still doing it TONS at home, and loving it. Pointing to the ground and saying "me" when I try to carry her. She doesn't want to be carried, she wants to try walking. Making her stuffed animals "walk" and saying "wah-king!" when they do! (Think she has a future as a PT? Maybe!) So, the spaghetti legs in PT are not an indication of this little girl's desires. She's just exerting her strong spirit and strong will -- a strong spirit that will take her so very very far in life. I'm sure of it.

I also realized that PT is only TWO HOURS out of her week that is 168 hours long . . . So what if those two hours aren't the most productive for some period of time while we work through this little "no" phase? That just makes our work with her the REST of the time more important, but it doesn't mean progress stops. Not at all. So with that, some of the "defeated" dissipated.

Sammie B will walk. I believe that with all of my heart. I don't know when. But she will. And in OUR journey to get there, she will continue to inspire and amaze me. But somehow, I have to let go of the urgency, and just "be." Easier said than done.

I also know *why* I'm feeling a lot of this urgency. Sammie B hit two-and-a-half last month. For kids in early intervention, two-and-a-half marks the beginning of the transition to school district services (instead of the EI program). We have our first meeting this month. And, truthfully, I have no idea what to expect. People have such varied experiences. I don't deal well with change (at all) and the prospect that we have to switch ALL of our therapists in six months, and that Sam will leave her safe, wonderful little center-based therapeutic preschool for public special-needs preschool overwhelms me. I hate that this aspect of Early Intervention makes it feel like this ticking clock where we lose the "team" and support network we've formed the last two years. Like a looming deadline where we start anew with new people that don't know our girl like our current people do. I have myself worried about things that I don't even know will happen! That the adult-to-child ratio won't be as low, they will encourage (require?) more adaptive equipment, that we won't get to be as involved in her therapies, etc. I KNOW I have to stop "borrowing" worry from another day, but again, easier said than done.

Two-and-a-half also makes Sam's delays more evident. The gaps between her and her peers - motor-skills-wise - are more obvious. She's not just a "late-walker." She has a mobility disability. I know that's just a label and it means nothing about her magic, but in these moments of discouragement, it stings. It hurts. I want things to be easier. The stories from other parents of other "late-walkers" are less encouraging these days, as most of them are of kids Sam's age now, or younger. So, that feeds the fear, the panic, the worry. (Although, yesterday, I learned that a little girl we know didn't walk until she was 5! I had no idea. And, a little girl who does hippotherapy where Sam does just started walking at 4 and a half! We will get there. And this mama won't give up. Yes, it will take TONS of work to get there, and there will be tears (from both of us!), and "nos" and spaghetti legs, but there's no magic number or age that says "give up.").

I'm just tired of the artificial timelines that make the urgency seem so real. That somehow diminish the progress happening right in front of me.

This journey is not easy. There's the peaks and plateaus; there's the worry and anxiety; there's the nagging feeling like maybe we should be doing more. Sammie B's desire to learn, for instance, is so very very strong. She could sit in her little desk all day, looking at books, letters, numbers, having us help her count, telling her about the alphabet (anytime she sees letters now, she says "ABC!"), etc. And, I love those moments. I love watching her learn. I love teaching my little sponge. And yet, sometimes, I sit there in those wonderful teaching/learning moments, and I think, "okay, we should be doing something more active. We should be standing and walking and working." That the "should be's" take away from those glorious moments stinks.

Life (her life) can't and shouldn't be be all work. I know that. But finding the balance - and feeling comfortable and confident that it is the right balance - is no easy task.

So, there it is. I'm back in the blogging game, and feel much, much lighter having finally owned up to my feelings. Bless you if you read all this!


EH said...

I imagine being a lawyer makes it so much harder. Almost everything we do as lawyers involves artificial deadlines - our work lives revolve around them, we jump to them, and we're always stressing about them. That mentality doesn't translate to kids at all, who are moving at their own pace and don't know that the chart in the book said they "ought" to be doing something by now.

So hugs to you and your Sammie B, who is feisty and strong, just as I would imagine your girl would/should be - and who will do everything on her own timetable.

abby said...

I'm so sorry that things have been so hard lately. I know how you feel (we were in a very similar place as you when Hallie was 2.5 and not talking, 3 and unable to socialize/play properly etc). Hallie HATED speech back then and part of the problem was the therapist. She was a nice enough person but just did not have the tools in her repertoire to help Hallie (or to appreciate Hallie). Hallie picked up on this and things went rapidly downhill. So one thing you might try is finding a different PT. One who can change things up and maybe make therapy more fun for Sammie.

Other than that, I just want to send support and let you know that I'm thinking about you guys.