Monday, June 25, 2012

Two Years Old



Tomorrow is the twins' second birthday. Deadline Day.

For those of you who don't know already or haven't heard me talk about it before, scientists say that before a child turns 2 years old, their brain is the most plastic it will ever be — change can occur more rapidly and more completely than at any other time in their life.

I wonder if this means that the glacially slow pace of Malachi's gross motor development will slow even further.

For the past two years I tried to keep open the possibility that Malachi would never walk. But especially in the beginning, whenever I talked or wrote about that idea, it seemed willfully pessimistic. Stop being dramatic, a little voice said, of course Malachi will walk someday.

But now he is 2 years old and he can barely roll over. He cannot crawl on all fours, he cannot sit by himself, he cannot stand up by himself. Conventional wisdom says because of this, he will most likely never walk. And you know what? When I look at how easily he startles, when I see how his entire body tenses uncontrollably when he talks about something exciting, I know in my heart, they're probably right.

I've worked really hard these last two years, but part of me wonders — and will always wonder — if I haven't worked hard enough. Unlike other special needs moms, I hardly ever do "exercises" with Malachi — all of our therapy is integrated into our lives. I think about CP constantly, as if I am trying to outwit it, but I don't force Malachi to do repetitive tasks or push him to stand or walk in strange contraptions. Maybe that makes me a bad mom. I really wonder sometimes.

Instead I've thrown my lot in with the Anat Baniel Method. Some of you might wonder why I'm so convinced that it works that I'm willing to tap out our savings and fundraise for it if Malachi isn't actually doing that great. I'll be honest with you: I wonder that, too. But as I roll over the evidence and theories around in my head — all day, everyday — I always come back to the same conclusion: It's the best method we've found. Even our private physical therapists have been really impressed with Malachi's progress and said to keep doing what we're doing.

So I can — and do — beat myself up about coulda-shoulda-woulda, but today I realized something that gave me a strange amount of comfort:

I haven't made him any worse.

Short of causing brain damage, nothing a mom can do can prevent her child from walking if he is capable of it — and I'm sure some desperate moms of toddlers out there have wished there were something they could do. Just because mine is so far behind doesn't mean I've been terrible, it means he was never going to by now anyway. All I can do is add to his abilities to a greater or lesser degree; I can't subtract from them.

So maybe this is good. Ok, fine. He's two years old. Now I know what the baseline is. Like I said last year, at least now I know what his CP is: It's pretty severe. Now I can readjust my expectations and start focusing on achievable goals.

Right?

Sure.

But don't be surprised if I'm still hoping Malachi will prove that "conventional wisdom" wrong.



There are MERE HOURS left in our Kickstarter campaign to publish the beautiful children's book Dark & Light and we are SO CLOSE to our $10,000 goal. All profits from the sale of Dark & Light will go to Malachi's medical care in perpetuity, minus 10 percent to a special fund for other special needs children. Win-win-win! Go get your copy!

26 comments:

  1. Happy 2nd birthday boys!!! And don't put too much thought into "deadline day". Mason's development completely took off after he was already two. He took his first steps, learned to sign "more" and a few weeks ago he finally learned to clap! I hope you have a wonderful day celebrating the birthday of two very special little boys :-)

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    1. Thank you, Jenny, that's really wonderful to hear. I'm so blessed to know moms like you a little further down the path.

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  2. Yeah remember, conventional wisdom is the bell curve, and each kid is an individual.

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    1. Thanks, Amy. That's very true.

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  3. TWO YEARS OLD - AWESOME!!!! Shasta you know that conventional wisdom pretty much sucks and doesn't really apply to anyone. Guidelines give us reference points for our brains and logic to process. Reality is the every day observations of how the boys - both of them - are building their skills. And so it goes the ongoing parenting experiment that never ends.
    Celebrate this two year milestone. You can not even imagine what they have in store for you.. Believe me - I am the parent of three completely different lovely ladies - who threw curveballs at me - not the same as the changeups Malachi brings to the game but parenthood is a ride for all. Those smiles melt hearts. Love it love them.

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    1. Thanks, Sue! You are always so great at helping me celebrate and see my journey in the larger context.
      And yes, I do. I love it. And I love them.

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  4. Honey, I've seen kids come out of eastern european mental institutions at four with CP, Spina Bifida, down syndrome, you name it...and learn skills that NO ONE ever thought they'd learn. The brain is crazy and unpredictable and you guys just keep on trucking... Go Mal GO!

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    1. Thanks! That's good to hear!

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  5. I know we're working a different set of challenges with Orson but he's blown me away with his verbal and social development in the last month. We're at 2 years 9 months! He's a completely different kid than he was on his second birthday. I think Malachi and JJ are poised to have a great, growth-filled year.

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    1. That's awesome, Marian! I'm so happy for you. Yes, I can't wait to see what the next year brings!

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  6. My boys are only *slightly* older than yours (born 5/13/10). In the last 6 weeks N has learned to 1) get into quad 2) crawl in quad approx 5-10' 3) pull himself into kneel/tall kneel on all sorts of things and 4) he has pulled himself into standing 3-4 times! While one of those things (getting into quad) occurred one week before he turned two, the rest were after! We had always hoped N would walk someday, but weren't really sure. His therapists are now talking about him *maybe* being able to take independent steps (with or without a walker/crutches) around his 3rd birthday.

    You just never know what they can do, and NO ONE knows what the brain can truly do.

    Wishing the boys a wonderful second birthday!

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    1. That's really great! Yeah, I mean it's not like I don't think Malachi will keep progressing, it's just that the trajectory is not as hopeful as it would be if he were sitting by now or something.

      I still can't really picture how Malachi's going to get to where N is from where he is now, but I have no doubt that he'll surprise me!

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  7. Shasta-You are smart, inquisitive and honest. You question your own motives and the motives of the approaches you use with Malachi. Most importantly you keep going. You are a great mother! Happy Birthday to the boys!

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    1. Thank you Michele. I need to hear that!

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  8. Happy Birthday to the twins! N is not severely affected, but he has some milestones that took him several months past the norm to master. We are also a family that doesn't do his pt therapy exercises with him. N seems to have his own timeline for development.. and I'm sure Malachi too. Growth does take place after two, and it's not that much slower than before two! Also, if your babes are not two *adjusted* you still have some time left on the clock :)

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    1. lol, yes, that's very true. I like having that extra two months of padding. :)

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  9. My daughter (who has hypotonic CP - I believe it's extrapyramidal based on what I've read in your blog actually!) turns 5 in about 2 weeks, and this summer has been one of the biggest for her developmental leaps. Pssh. "They" used to say that the brain was not plastic at all, right? ;) It's all about progress - what I've held onto is that (more or less) CP is not a degenerative disorder. There's nothing to do but improve improve improve. :) Happy second birthday to your boys!

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    1. That's awesome! Hope lives! Wow, I can't even imagine what he'll be able to do at 4! Looking forward to it!

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  10. Anonymous8:01 PM

    Happy birthday to the boys! I hear your anxiety, am experiencing it myself with my son, who has just turned 1, with cerebral palsy and CVI. He is also not able to roll, sit, or anything beyond, although has started using his right hand and seeming to "see" some things lately. We are scheduled to start ABM in July and are excited to see what will happen. Excited about your book and looking forward to seeing the next ones as well!
    Micheala

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    1. Very cool! Thanks! I hope you find ABM useful!

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  11. First of all a big Happy Birthday to the twins! Your a fantastic mom and don't you let anyone tell you anything different! What I see you doing for Malachi is simply amazing!

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    1. Aw, thanks very much Ross.

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  12. Happy Birthday to the boys (late, sorry). I'm not sure where this "deadline" came from, but brain injury is not degenerative. And, I also guess it depends on your perspective - when I look at Malachi, I don't see "severe" at ALL. I wouldn't be surprised at all if he does all these things you hope for. I came to a different place, but our "deadline" was really "six months after accident" so I guess it was sooner.

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    1. Oh yes, I definitely thought of Cici when I wrote that line. But then, that's my point — he doesn't seem severe at all to me either, so why isn't he doing more? The vast majority of kids with CP that I know online seem to have been able to do more than Malachi can at this age — even those who are called "mod/severe." I guess it's time for me to explore what the dividing lines are between "mild"/"moderate"/"severe".

      I think the 2 years old thing is what parents of kids born with BI are told whereas the 6 months thing is for stroke and BI patients later in life, though since Cici wasn't THAT much later in life, I don't know what the deal is there.

      And yeah, it is what it is. Looking at other kids' abilities and inabilities really doesn't have much bearing on what Malachi will or won't be able to do and how happy or unhappy I'll be about it in the future. All we can do is try to appreciate the now and you guys are definitely helping me do that.

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  13. Happy birthday to a pair of amazing boys. I know that somewhere inside, they know how completely they lucked out by getting a Mom like you, Shasta.

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  14. Happy Birthday to a couple of gorgeous little boys!
    Shasta, here in NZ, we are told that children's brains form 85% of their connections within the first 3 years. Don't give up hope my friend. I know that you are and will continue to do whatever it takes to get the best outcomes possible for Malachi.

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