It Goes Both Ways

This week Charlie and I have been talking about cows. Riveting, no? I assume this is why you’re reading this blog–for the incredible discourse on bovine populations. Anyway, our usual cognitive program was overwhelming me a little (it’s possible everything overwhelms me this time of year), so I took a page from the Letter of the Week Curriculum and took a few basic things and just talked about them several times over the course of the week. I actually only did half the Letter of the Week curriculum because between therapy and therapy and you know, therapy there never seems to be enough time in the week for normal toddler stuff. Some days I would be willing to swear that it’s the freakin’ schedule that keeps the special kids behind. No time to talk about farms today! You’ve got stretching to do!

So this week we talked about cows and the letter A. There were some not-very-successful books from the library (Dear Lord, why does my child hate books so much?), puzzles, pictures, a video I checked out from the library and then decided I was kidding myself, and even some multi-sensory flash cards. I actually feel pretty good about the whole thing–I definitely think some of what I said sunk in. There was at least a glimmer of recognition when I said “a calf is a baby cow” for like the eighth time. Now, at the very least, I can tell St. Peter that I taught my kid about cows. . . that’s an automatic in, right?

The teaching thing goes two ways though and I was reminded of that again this week. I was trading e-mails with another ABR mother who was feeling down and out. She’s eliminated some of her daughter’s spasticity, but with that, her daughter has also lost the ability to stand. Make no mistake, it’s progress, but progress can be tough when it means losing something in another area.

If there’s anything that Charlie’s taught me, though, it’s that progress is rarely linear. Maybe you knew a girl in high school who was both tall and blonde and a cheerleader and the Homecoming Queen, but for most of us, I think it’s a little less cut and dry. Some of us have frizzy brown hair aren’t really coordinated enough for any sort of group dance other than the line variety (this is completely hypothetical, right?) Life is series of starts and stops–a victory lap followed quickly by a skinned knee. A touchdown and a sack all in the same quarter.

Charlie “loses” skills all the time. I think we went three straight months where he wouldn’t stand for a second. Now he’s back and better than ever. He used to clap on command, but don’t expect him to do that these days–he is so OVER clapping. He will give you five, though. Five is still cool (this week). As he works on one set of skills, another set is pushed to the side and while I know it’s common, it can still be tough to take.

Almost every part of life feels the same. We don’t immediately take our place on the top of the mountain; we don’t have it all right away. We stumble. We lose ground, but we take a deep breath, maybe check out the scenery, and then we keep moving. Not giving up is often the biggest challenge.

Having a special needs child in my life is a constant reminder that life doesn’t hand us everything. Hard work is part of the equation. I try my best to remember all that I do have and not dwell on what I don’t. When life hands me a setback, I remind myself of all that my teeny, tiny baby was able to overcome and that helps keep it in perspective. I’m aware that this all sounds cheesy and sentimental, well, that’s because it is–my kid inspires me. He makes me better and he reminds me every single day that most of the stuff I’m worried about isn’t even a big deal.

***I really wanted to add some pictures to this post from our trip to the architectural salvage yard today, but my stupid battery went out right after I took a picture of nothing!****
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  1. Well said.

    Just got How to Teach Your Baby an Encyclopedia of Knowledge :) These are great books, and I just love his attitude.

  2. Great post! I definitely think that happens with a lot of things in life. I used to wait until everything was going really great, then suddenly find myself really upset over things that had happened in my past- it's like my mind was waiting to process stuff until it felt like it was in a safe place to do so. Two steps forward, yada yada yada. :)
    On a completely different note, Lady Gaga does in fact have a Christmas carol- it starts with the phrase "Light me up, put me on top, let's Fa la la la la- la la la la!" So wrong! I'm sure Charlie would love it. 😛

  3. LOVE that website! That is exactly what I have been looking for. Can't wait to start with Caleigh. It's so NORMAL and I love that.

    We are also trying slippery elm for her colitis/reflux this week. How long until you saw a difference in Charlie's reflux?

  4. So true, Katy. You and I must be on the same wavelength. I have been struggling with worry about Faith's surgery. Even though it will help her walk, now she can't walk on her knees, anymore. Which is sad b/c she just mastered this skill. Maybe she will regain it but who knows. This life is so uncertain for everyone but it is doubly so for our children.

  5. therextras says:

    I understand St. Peter is quite partial to farm animals…oh, or was that St. Francis? Whatever. I won't be worrying about your place in heaven.

    "it's the freakin' schedule that keeps the special kids behind"

    That's what I used to think when I worked in the schools… always being pulled-out for 'specials' or pep rallies or assemblies – 'course that was part of their 'inclusion'.

    I digress.

    Merry Christmas to y'all!

  6. so glad you're trying Letter of the Week–and I can so identify with one step forward, then two steps to the right! =)

  7. Anonymous says:

    I will read on your blog and help to do my level best for all the kids out there, but do it anonymously for now… I learnt a lot in a crash course of 6 months but I didn't learn enough in time. I didn't fight the time when I should have fought. I will help those of you who choose to fight with all my heart.

    Neuronal growth occurs in waves, some skills appear to be lost temporarily. They may appear back or not but my guess is that if you reinforce that behavior they will never be forgotten. It is hard to retain stuff for normal humans if we are not interested, and I imagine it is harder still for special kids. You need to fix it in their memory, and how do you do that?