Tuesday, July 20, 2010

What's going on inside his head?

This weekend, we were driving around when Max got excited and started saying "ARRRR WAHHH!!!" ("CAR WASH!!!") over and over. Dave and I had no idea why. We kept driving. Max got more agitated. Finally, we stopped the car and let him direct us to where he wanted to go. His gestures lead us to a car wash. He'd been there with Dave a year ago, and he remembered exactly where it was. Amazing. He has an incredible visual memory.

Max's brain is, in many ways, a mystery to us...and to doctors too. We know the bilateral stroke he had at birth damaged several parts of his brain: the parietal and occipital lobes, and part of his frontal lobe. His brain stem—which controls vital functions like breathing and blood circulation—was spared. We don't know what sort of healing has taken place because we haven't had an MRI done since Max was a few days old, that turning point in my life when I first learned that a child could have a stroke. And that my baby boy had a stroke.

We agree with our neurologist that doing an MRI at this point isn't necessary. If Max's brain looks a lot better than it did in the horrifying MRI film from the hospital, that would be nice to know. But it wouldn't change the therapies he receives or how we treat him. And if Max's brain still looks really messed up, well, that would devastate me, and what good would that do?

So when Max shows us his smarts, as he does every day, I marvel at his brain. Yeah, the damage has done a number on his ability to talk and use his hands. But there are plenty of kick-ass cells in there doing their thing. I'm not sure if the stem cell infusion has helped, but whatever is going on, I'll take it.

At the same time, it's clear that Max doesn't quite get some things, and I want to understand why. Does it have to do with the parts of his brain that are damaged? How, exactly, are they affecting his intelligence and comprehension? One of the biggest things I wonder about is why Max doesn't notice when other kids stare at him or say things like "Ewww, you're drooling." He also doesn't always understand how to connect with kids. Sometimes, he'll pretend he's a monster and he'll run after kids and roar, but even when kids seem annoyed or scared, he doesn't stop. (Then again, who knows, maybe he's just got an obnoxious streak.) I also wonder why he has such trouble grasping concepts of time, like what "next week" means. Or why he likes to repeat stuff again and again.

I'm thinking of taking him to see a developmental psychologist. It's not that I want to get him tested to find out what developmental level he's at or what his mental "age" is; I long ago quit torturing myself that way. I just want to better understand the way his brain works.

What do you wonder about what's going on inside your child's head?


  1. I truly believe that Max is a special boy. I don't know how many people he inspires, but let me say that I'm one of them. Car wash...epic!

  2. Your boy sure sounds amazing in so many ways!

    Many times I wonder what goes on in my boy's head...I wish I knew!

    Have you heard of an organization called National Association for Child Development....check them out! We have been working with them for about 6 years and they have really helped us. They are not your typical mainstream therapy/doctor organization. I have been very pleased check them out at: www.nacd.org

  3. I do. especially when it's socially inappropriate. We have different types of issues than you, ELLen, but, still, I just don't understand how my guy is missing that filter.

    I like to know more, a Dr. once told me that to know helps you understand and deal with the behavior at hand. I like that.

  4. We are in a similar boat here...although much of Christopher's brain damage *we think* is affecting things like digestion, immune issues, etc. Christopher is missing between 40 60% of his brain matter (depending on which doc you talk to). He should not even be conscious, let alone working on colors and ABC's. You can also tell that he understands soooooo much more than he can express. I can't imagine how frustrating that must be for him.

    We will more than happy with what ever we get, but it sure would be nice to know what IS going on in there! :)

  5. Great questions. No matte what max is a gem through and through.

  6. Faith is a repeater, too! I am fascinated by the brains of these kiddos. Really, it's amazing! Faith always surprises me with what she remembers, things that I didn't even teach her!

  7. All the time! All the time I wonder about exactly what my son Ben is thinking.

    That example of Max knowing exactly where the car wash is is very similar to Ben remembering a location that we had no idea he would remember -- a faraway school from years ago, or a part of town where one of his workers took him to get a particular action figure. It makes me think of all the times that our kids are thinking things that we don't know!

    Ben doesn't get those social cues the same way other kids do (e.g. being embarrassed if he does something that isn't socially appropriate). xo

  8. I've had kids with some issues (nothing close to what Max has to deal with). I found developmental testing was hugely helpful to me to understand their strenghts and weaknesses. It helped me understand where they were coming from, which at the very least gave me a lot more patience. And the psychologist was able to give suggestions as to how to support/strengthen the weaknesses.

    One of my daughters is on the Aspergers spectrum. When she was younger she would constantly talk about horses: horse this, horse that. Working with a psychologist specializing in Aspergers he pointed out that many things in life, especially social interractions, were stressful and scary to her because she just didn't understand typical social interractions. In order to "feel safe" she needed to feel in control. So by monopolizing the conversation to her area of interest (horses) she was able to put herself in control and feel safe.

    We noticed that the horse talk increased during stressful situations, or when she anticipated a stressful situation.

    We found that this "being in control to feel safe" extended to other areas of behavior. It helped a lot to understand this. Sometimes it helped because we could make her feel safe in other ways. And sometimes it just helped because we understood where the behavior was coming from, and we wouldn't feel as frustrated.

    I don't know if this has anything to do with Max, but I pass it along just as a thought to add to your toolbox.


  9. I often wonder what is going on in my son's head. Like your boy, mine has not had an MRI since he was a baby. The doctors don't know why my son is the way he is and after 7 years of pokes and prods and this test and that, I stopped subjecting him the test. Like you said, regardless of what answers is may tell, it is not going to change what we are doing with them now.
    Everyday my sonn amazes me with something new, showing us that, like you said, things are working in his brain...just differently. And there is nothing wrong with that.

  10. My little gasbags are the opposite--they never "fail to communicate." Morning, noon, night, about everything and anything. My issues are meltdowns, mostly, keeping up with peers (not happening in my oldest), and impulse control. When they repeat things, it's usually because they get a charge out of the sound they are making (yelling poop and making fart noises, and cackling with glee--AAAGH!).

    Isn't the brain an amazing, plastic thing, though? They do hemispherectomies on kids who have constant seizures, and they not only survive, but thrive.

    I think Max gets WAY more than many people think--he's just challenged to communicate what he understands. And he may well recognize when kids stare (in fact, I'd bet he does), but that's just "part of the landscape." To Max, the staring kids are "just there." That's HIS everyday reality--they've always been there, like the grass, trees, and sky. Some kids are always gonna stare, because that's what THEY do. It's not about Max at ALL, from his POV. Those starers are like grass, trees and sky. Am I making my point, or are you thinking "Why the hell is that crazy woman focused on grass, trees and sky?" What I'm trying to say is, that's always been HIS environment. This is something I have seen and "get." I suspect puberty may do a number on that attitude, but that's a ways away.

    The "monster" thing must have worked brilliantly on at least a few occasions, and given Max a great deal of joy--that's why he keeps trying it. Trying to get the feeling again, as Manilow croons?

    Maybe you should have Dave take Max for an MRI and just not look at the results if they bother you (I know, your curiosity would get the best of you!), simply to refer back to years from now as a developmental tool--I have a feeling that there IS healing happening, or at the very least, some MAJOR rewiring. I also agree with you that Max should have some testing, because it will help all of you develop communication strategies to better be able to interact with that resilient brain of his. You can't "play to strength" if you don't know precisely what those strengths are, and you can't compensate for weaknesses if you haven't pinpointed those, either.

    I think the reason Max was repeating/getting agitated is because he can't communicate like HE wants and is frustrated. Is he using that new tablet thing at all? If you haven't done so yet, put "CAR WASH" in the thing! Attach it to his booster so he can poke it in the car and say "Stop! Turn around! Car wash over there!" Tell him you'll go to the car wash if he uses the thing to make a sentence; same deal with lots of treats and special events. I know you can "read" him at home through gestures and are attuned to his "accent," and probably don't insist that he use the thing regularly to interact with you guys, but it would probably benefit him in a huge way to both use and get VERY proficient with it--that way, there's no struggle if he needs to get a message across in a hurry to someone who isn't accustomed to his style of communication.

    What you're describing, though-- his memory of a location--and HOW TO GET THERE--from a year ago is pretty amazing. I can't find my way to a coworker's house two towns over that I went to three weeks ago! And I was the one doing the driving!!!! No shit, I got lost the other day and had to make the phone call of shame!

    I don't know, Ellen, it just seems to me like Max is doing incredible stuff at a more rapid pace lately. Of course, I'm only going on what you tell us, but still...! You do have to wonder if the stem cells are doing their thing! Whatever it is, I hope it keeps-a-coming!

  11. Audrey shares everything that you mentioned, so these all sound like autism to me. She has the same visual memory for directions to (especially preferred) places. It's funny you mention the "next week" thing...Audrey has no idea what that means...and from her reaction, she apparently thinks it means a 1000 years from now. We just put an ABA program in place to address this.

    I wonder about the repetition...what is going through her head? Is she processing something so it sinks in? Is it just soothing? Or does she just have a broken record in her head? Sometimes she whispers things to herself...that's when I really wonder what's going on her brain.

  12. I have taken both my typical kid and my not-so-typical kid to a developmental psychologist and asked them to help me understand how each child learned. I could make guesses based on how they interact with me and their siblings, but I was pretty sure that I was missing something that could help them. The nice thing was that once we completed the eval, the psychologist provided me a list of resources tailored to each child's learning style.

    I did the same thing you discuss re: MRIs - a new report won't change our treatment plan, so why subject him to another test? I feel like I'm in the minority here, but that's probably due to where I live.

    Thank you for another great post.

  13. We got the follow-up MRI at 1 year. My son was doing so well I was convinced it was going to show healing. Instead, it was way worse and it really opened those not-so-old wounds. I wish I would not have gotten it.

    Julie Lewin

  14. Wonderful post. I think that parents of special needs kids try to do this (get inside their child's head) way more than "other" parents. In a way, I think that may be a gift to us. It really makes us think and try to connect with our kids on such a deep level.

    Julie McAllister
    Inspiring Mothers of Special Needs Kids to Love Themselves

  15. Max is awesome. So cool that he remembered where the car wash was a YEAR later!

    I wonder what Elijah is thinking all the time. He has very little means to share his thoughts with me, so I suppose it's only natural for us to wonder.

  16. I used to sing "show me a sign" from Signing Times A LOT. I still want to know what's on his mind (when he "checks out", when the end of a phrase drifts away, when he missed obvious social cues, when he doesn't respond, when he takes crap from meanies....)
    I was reminded long ago that Ben missed out on learning how to be a kid from kids. Adults just can't teach some things, and when you don't walk and talk, it is the subtleties of childhood that slip through the cracks. I have also been reminded that Ben has other more important and meaningful things to think about, like breathing. I have been reminded that it is OK that I don't always know what is on his mind, he does.
    I know more than I used to, but still, what I wouldn't give to listen to his thoughts.

  17. I often wonder what's going on in Buttons head - the way he perceives things and has no concept of being different is amazing. But why is he so upset if his fries are stuck together? and why can he remember what the name of the lady we met in a hotel 5 years ago, but not where he put his shoes? Lovely post as always xx

  18. I wonder all the time. I wonder how much she understands; how much is sinking in; how much more she really "gets" stuff since she can't communicate well. I wonder what the real difference is in there between her receptive and expressive language skills.

    I wonder how I can help her get her needs met. I wonder how I can make it easier on us both.

  19. Dude, you must get the book The Brai That Changes Itself and read about the girl that has half a brain. Blew me away. Really.

  20. i love our developmental behavioral pediatrician! he has been THE most helpful specialist we've seen. he has been the only one able to asses the entire picture with my son, give us some insights about what's going on, and make suggestions for specific activities that can help him. i would definitely recommend going ot see one.


Thanks for sharing!

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