Tuesday, October 12, 2010

Why I DON'T want to accept the cerebral palsy


It's taken me a long time to come to terms with the challenges Max has as a result of the cerebral palsy. Last week, though, I realized I'd better quit being so accepting.

It started with my niece's one-year birthday party on Sunday. My sister was having it in a big event room with 50 guests, and Max typically hates crowd. I'd resigned myself to the scenario I envisioned: He'd wail and screech and want to leave. "I'll hang out with him in Judy's apartment," I told Dave.

Except here's what happened:





I mean, he even did the limbo.

Then Dave took Max for a haircut while I was away over the weekend. We figured Max would get upset, but his hair has become a vision hazard and Dave volunteered to handle the usual haircut meltdown.

Except here's what happened:


And then, last night, Max was roaming around naked before bathtime. I've made peace with the fact that we're in for a long haul before he'll potty train. We've tried, but no interest.

Except here's what happened:

Max wandered into the bathroom and pointed to the potty seat. We put it on the toilet, plopped him on it and he peed. At which point I performed my world-renowned "Max peed in the potty!" dance, coming soon to DVD.

My level of excitement—and surprise—at these events tells me something. To be sure, the accomplishments are worth woo-hooing about. But the thing is, I have gotten so complacent about Max's disabilities that I am bowled over when he surpasses them.

When he was a baby, I refused to accept. No, I didn't really have a kid with cerebral palsy and maybe it wouldn't even show and please please please let him be OK. As he got older, I did battle with the cp. I massaged Max's stiff little legs and arms, and got down on the floor and showed him how to crawl, and then I helped him move his arm and leg and arm and leg to get him to crawl.

But surprised? No, I wasn't surprised when he finally crawled on his own and took steps and walked.

Now Max is 7, almost 8. And I'm getting a little too astounded by his progress. I think it's because I've accepted the cerebral palsy. I've drunk the special needs Kool-Aid. Yeah, my kid has brain damage and his muscles are somewhat messed up but he's walking and he talks in his own way and he's using both his hands and he's doing amazingly well for himself and yes, he's super-cute, thank you.

And yet.

This acceptance has done on a number on my expectations. It's neutralized them, so I no longer anticipate accomplishments, though of course I celebrate them when they happen.

I need to rip my head and heart out of this complacency rut and realize that Max is going to keep getting the best of the cp month after month after month. There is much to look forward to.

Max deserves that anticipation.

Screw you, cerebral palsy. I'm not going to accept you.

35 comments:

  1. When I first started reading you here, I didn't know my daughter had also suffered a stroke to cause her CP, we thought we were dealing with anoxic brain injury only, not stroke as well. My bubble burst recently when we finally got an MRI. I've been stuggling somewhat extra lately, but I also have decided not to accept something - STROKE! I do accept CP because I have made up my mind that it will not stop Hannah. I don't accept the stroke. It is just not allowed to come over anymore, and will not be a guest in my mind. Jo wisely told me the map of my Hannah's brain is not a map of her future. So now, when a kickboxing style routine comes up in Jazzercise, with every jab, punch, uppercut, hook, or kick, it is landing on STROKE, that fuckwit.

    And as we learned in the eternal classic, Galaxy Quest: Never give up, never surrender!

    And Ellen, he really does have great hair.

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  2. You're so right. I was gobsmacked last week when Mikey's teacher told me she was pretty sure he'd read his friend's name because he matched the written word to her photo. I had no idea he was even near that - it made me think about how I'm accustomed to his current developmental stage and don't seem to focussed on getting to the next level! It's perhaps different to the physical milestones like crawling and walking - I felt I could see the progress so much more clearly. The other stuff feels that much more ephemeral.

    Loving seeing every new step Max makes, he is brilliant! Glad he surprised you! X

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  3. amen to that! I realized that i need to do that as well. great post!
    Kristen

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  4. barbara from BostonOctober 12, 2010 at 6:38 AM

    Hey Ellen, Be careful of that koolaid - remember what happened in Jamestown? Seriously, your little boy is growing up - at his own pace and speed and on his own terms but it IS happening.i am so happy for you all.I still wonder if his maturing by leaps and bounds has some connection to the stem cells. congratulations!











    Be careful of the koolaid - remember what happened with Jim jones sect? seriously your little boy is growing up - at his own paceon his own terms. Still wonder how big a connection theere is to the stem cell injections. Did they take a baseline ofhis behavior and milestones in North Carolina before the transfusions, so they could empirically document his progress after the injections? seems related.Anyway, Congratulations!








    cglasshag

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  5. Wow
    wow

    I'm so proud of all those steps

    IRS so great when your special child does something another child would do

    thanks for sharing

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  6. Very well said! My daught has been doing things lately that surprise me. I am thankful that she is showing me some new skills, but hate that it surprises me so much!

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  7. Congrats on the growth and development! Oh, and congrats to Max on his, too!

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  8. I wouldn't be so hard on myself if I were you guys, really. It's not that surprising that you've recently found yourself surprised. Doctors are known to lower expectations in an attempt to not have parents heartbroken. And since you are all in the crucial developmental years in your childrens lives, you come into contact with this daily. So, it's OK to be surprised.

    Oh and I drove for the first time in Albuquerque, at night, in the rain, as the DD for my twin.

    I have cerebral palsy. I'm 26. I was surprised, thrilled, and excited. And I wouldn't trade those feelings for the world!

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  9. Since when did diagnosis mean you had to fall within every line of outline of the said diagnosis. I must have missed that memo (and clearly Max did too).

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  10. Thanks for sharing these great stories and the pictures to prove it. I catch myself too often limiting my son and this was a great reminder to stop.

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  11. I was moved when reading this post. I had the good fortune of growing up with a good friend who had CP. We've been friends since I was seven years old and he is a Lawyer today. He got married in August and I learned early in our friendship not to treat him differently. I may have been one of his only friends at that age who got him in trouble and encouraged him to run. It wasn't that I didn't understand how difficult it was for him it was just that we wanted to have fun together. So it wasn't surprising when we would climb the stairs over and over after his hamstring and heal cord lengthening to slide down them on the plastic couch cushions his mom had.

    This experience had prepared me well to deal with my daughter's CP. There is a lot that she can't do like other kids even though she is fairly high functioning, but my philosophy is to push her to try and don't worry about falling down because the only way she'll lose is if she decides not to get back up. The philosophy has worked for her and it works for me too as a parent. I commend you for realizing that you may have become complacent now get back up and keep playing :)

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  12. I totally get this. It reminds me to keep looking for those milestones -- just maybe not in the "typical" timeframe.

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  13. Congrats to Max (and to you!) ...that is awesome!!

    expectations are a tricky thing with these super powered kids. You don't want to set them unrealistically high...but you don't want to set them too low either. Since Jack is just 2, I think we still have very high expectations - and of course every belief he will accomplish them! However, we do accept he will never RUN in the Boston Marathon but that doesn't mean he can't participate in it.

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  14. I'm often glad that my Mom knew diddly-squat about TBI and deafness... she'd never have done things like force me to learn Chinese and send me to Japan alone when I was 15 if so. Um, I hope.

    Anyway, Kool Aid never did a body any good.

    And: I have some people that I'd like to introduce you to if you are interested. People with severe CP that graduated from UC Berkeley and are doing great things in the world. I'll email you about it.

    - meriah

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  15. Awww I love this Post! I'm so proud of you Max =)
    And Yes, screw You CP!!

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  16. That's so wonderful to hear!! way to go Max and mommy!! =)

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  17. He is WAY cute.

    One of the things my "special needs" son taught me is always to expect the unexpected. When I lowered my expectations for him (usually unintentionally), he was happy to live down to them. The key for us came when we stopped focusing on the problems and started focusing on the solutions. Sounds simplistic, but it is completely true.

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  18. WhooHOO! Way to go Max!
    Kids are funny. Just when we think we know what to expect... they do a 180`

    I am still in the process of accepting, and simultaneously unwilling to give up... It's a difficult spot to be in.

    But, I think, I'll keep doing the next 'right' thing and eventually it won't matter what I've excepted or not.

    Thanks again for sharing.

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  19. Love this!! Screw you, 5p- Syndrome, I'm not accepting you. I love it! ;)

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  20. I haven't reached the top of our mountain yet, to where I can say that I can have that same mental capacity that you have. But it is an inspiration nonetheless to read your posts and draw strength from them.

    But I still have some growing to do first. My son and I both do.

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  21. It's such a fine line to walk, isn't it?

    In my family, usually I accept and my husband doesn't. This works for us, because he'll keep pushing the kids even when I've stopped, and I usually know when to have him stop pushing.

    BTW, I so hear you on the hair cut thing. And dentists. Oy, dentists.

    Congrats on everything. I'd pay money to see that dance. I wish you many more dance-worthy moments. Because while we want to expect great things from our kids, I think the biggest gift of being a special needs mom is knowing that for every kid, even the little things are great.

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  22. This post made me tear up, for so many reasons Ellen, but I think it's awesome that you've accepted and yet still haven't accepted. It's such a fine line to stand on, and half the time I find myself not being able to balance on the middle.

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  23. Go Max, Go Max!!! You inspire us ALL!

    Great post, well said.

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  24. YES! YES! YES! This is the way to go. Fight and show him how to fight. There's a delicate balance between fighting and accepting, isn't there? I'm learning.

    So much of this post reminds me that we can never give up on our kiddos. Plus, you just never know what they're gonna be like. We set up these low expectations (i.e. we're gonna have to leave the party because it will be too loud or too overwhelming and she'll breakdown, etc) but every once in a while, these kids surprise us and bring us more joy than we ever thought possible!!

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  25. It's such a tricky dance we do, isn't it? It's a fine line between acceptance which allows us to work with what is in front of us to help our children succeed and that which causes us to stop searching for those rainbows.

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  26. There is a God and he's working in Max and he's working in CJ (my little boy diagnosed with CP).

    God takes pleasure when we fight against illness. It's not His will for us!

    Max looks like he had a great time at the party!

    I'm waiting for the day when my CJ (now 9) will walk.

    I too reject CP just like Ginger rejects the stroke!

    Michelle

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  27. I don't understand this concept. Why would accepting Max's CP mean rejecting any expectations of him? My parents accepted my CP but still expected me to do what everyone else did. I graduated high school, I'm going to a great college, I'm going to have a good life. This does not require me or anyone else to reject/deny or ignore my CP.

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  28. For me, acceptance (that Max has cp, along with the challenges it brings) has been a tough road because it has lead me to think that Max ISN'T going to do something, instead of having optimism. I admire your parents' attitude, Lisa--I am just not there yet.

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  29. Stem cells!! Perhaps they headed right for the place that caused Max such anxiety in new situations, enabling him to learn without stress?

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  30. Felicia, I've missed you! Where have you been?! I love how you have so much faith in those stem cells.

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  31. Ellen, I got a second job! We've moved in with my folks while my dad fixes up the house he bought just behind their place (it is steps away, literally, but falling down). We'll be moving in there eventually but probably not before spring--it needs a new furnace on top of everything else. We have a renter in my place, a nice widow and her dog (that house was paid for with insurance money, free and clear) which is a swell little check every month and I am doing double work duty trying to save serious money for the SN trust fund we started--I figure I have to do it now, because I'm getting older every day and time's a wasting! I put all the money from Job 2 (which sucks--I'm doing three days a week in a nursing home and it is hard work) plus the rent we get from the house into the fund and it is growing nicely. I don't want the baby to have to worry about his older brother, at least financially, so I figure I better get a move on so that isn't even an issue. So far, so good! I've just been busy but I am starting to get into a groove now! Mom is a saint, she's doing a lot with the kids so I can work, but it is all working out fine so far--we probably should have done this a long time ago, but everything in its season I guess!

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  32. Very thought-provoking. And my favorite aspect of this post: you are keeping it real.

    It is a balance but why settle for less? I don't know where our youngest two will go, but I know they're going places! To their own places, wherever, however and whatever that is … and it is good.

    Thanks again for your honesty. It is so refreshing and encouraging.

    Came over from NHBO.

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  33. I thought like that when my 5 year old Henry was diagnosed at a year old with cerebral palsy, but do you know what. It's not so much screw you cerebral palsy, as it is to embrace that it is part of my son and to a certain degree makes him who he is - which is a determined, loving and fun little boy. Henry doesn't walk independently yet but he does everything and I mean everything that the other children in his school do.

    Not to say that he or we don't get upset or frustrated at times, that's natural, but we can only do our best and make sure that he is happy everyday.

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Thanks for sharing!