Tuesday, January 12, 2016

The hardest question to answer


"Did I have a playmat when I was a baby?" Max asked me yesterday afternoon, when he came home from school and I was playing with Ben. He's been asking these sorts of questions since his little brother was born. Typically, he points at the object, makes a motion of rocking a baby and points to himself.

Max has wondered whether he had a car seat when he was a baby, whether he cried a lot, whether he made big poops. His whole face lights up when he hears that, yes, he used to be just like Ben—or rather, Ben is just like he was. I'm not sure why he's asking. It might simply be Max putting together the pieces of who he is.

In the evening, I was holding Ben and he was making cute sounds. Max pointed to the baby then he pointed to his mouth. He was asking if he had made sounds like that when he was a baby.

I got choked up. Because, no, Max hadn't. There were no sweet coos when I held him, no gurgles from the back seat when I drove him around.

The silence was painful. I knew Max was at risk for not talking because the stroke he had at birth damaged the part of the brain that controls speech, and I was desperate to hear him babble, a precursor to speech. Once—once—when Max was Ben's age he made a sound while I was driving him to a therapy appointment, and I got so excited. I can't remember the sound which is weird because it was monumental at the time. I thought it was the start of something. But, no. He never goo-goo-gooed or ga-ga-gahed..

I didn't want to tell Max he hadn't made sounds like that as a baby; I didn't want him to think anything had been wrong with him. In retrospect, I wish I could have been straight up and made it part of our evolving conversation about cerebral palsy. At that minute, though, I was floundering in sadness that had unexpectedly surfaced and I didn't want Max to see me upset. So I swallowed hard and said, dodging the question, "Max, you smiled and laughed a lot when you were a baby!"

He grinned and seemed satisfied. For now. As Ben gets older, there will be more questions, I'm sure. Did he hold a bottle like Ben? Roll over like Ben? Crawl like Ben? Sit up like Ben? Play with toys like Ben? Talk like Ben? Walk like Ben? Jump like Ben?

I've thought about it. When the answer is "no"—Max never did hold a bottle, for one—I can explain why. Because the cerebral palsy made his muscles tight his hands were in fists most of the time, so Daddy, me or the babysitter held the bottle for him. But I'll also be able to say that as he got older, he learned to hold a cup, and he's gotten really good at that.

And when the answer is "yes," as a baby Max did do things Ben does, I can make it a point of pride that he did them his way. And maybe I'll get down on the floor and show him how he commando crawled, using his arms to propel his torso like an army solider in combat. 

I want Max to feel so good about his accomplishments. I want him to understand that even if he  didn't do the things Ben does or do stuff exactly the way Ben does, he's always been an incredible boy, then and now. 

17 comments:

  1. Although my experience is nothing like yours, I did have a similar instance this past week. My sixth-grader is learning about bodies and development in science, and they were tasked with bringing in the ages at which they crawled, babbled, rolled over, talked, etc. She was significantly developmentally delayed, and I did not want to have this discussion happen in front of her peers or with her teacher – who is extremely unsympathetic. I ended up telling her that she rolled over at five months, and emailed the teacher to tell her that was the only fact she would bring in. I explained that she was significantly developmentally delayed, and this would have to suffice. It hurt, though.
    I think you're doing a fantastic job with what could be a very sticky subject!

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    1. Carmen....
      As an individual who has learning disabilities and is developmentally delayed, I feel for you. In more ways than one. ;)
      Question. You wrote that your sixth-Grader WAS significantly developmentally delayed. Didn't you mean to write IS? Or has she overcome her developmental delays? If so, good for your daughter!! I am just wondering.... ;-D
      Love you later, Raelyn

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    2. Raelyn, she was developmentally delayed. We did two very intensive years of OT, and she has caught up to her peers now in the sixth grade. She has worked very, very hard and these days, very few people even know that she had issues. But she really did have significant issues.

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    3. Carmen....
      I believe you that your daughter HAD significant developmental delays.... Please understand that I was neither doubting, nor judging this fact!! ;)
      And I am very happy for your daughter.... You must be such a proud Mama!! ;)
      Thanks for answering my questions!! ;-D
      Love you later, Raelyn

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    4. Carmen- I'm 17 and I remember those lessons in elementary and middle school and even 9th grade biology. I am a 28 week preemie who has hearing loss and had speech, fine motor, and gross motor delays. I didn't walk until I was 13 months, and had the speech of a 9 month old at 19 months. I received speech, OT and PT for several years. I still receive test accommodations. I was never embarrassed by the fact my milestones were later. I was(and am) proud to tell my story and educate people that everyone is different. What did your daughter think about the assignment?

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  2. I know I walked and talked late. I never learned how to ride a bike or play piano.

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  3. Ellen....
    "I'm not exactly sure why he's asking. It might simply be Max putting together the pieces of who he is." This sentence touched my deepest, most heartfelt emotions and struck a chord with me.... It can be quite an eye-opening, emotional, therapeutic, healing journey to put together the pieces of who you are. For anybody, especially someone with special needs.... Trust me. ;)
    You are a good Mom, Friend!! Max {And Sabrina and Ben!!} is so blessed to have you in his Life!! I do mean that. ;-D
    Love you later, Raelyn

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  4. I always tear up reading your posts...happy and touching sometimes heartbreaking...You are an amazing mom --thank you for sharing your journey!

    -Steph Krol

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  5. My granddaughter has just started to walk, at only 9 months old. My 14 year old son has been handling it better than I thought he would - it always upset him when his much younger cousins started outpacing him. I'm wondering if the pride he takes in being an uncle is helping him celebrate her accomplishments, though he did ask how old he was when he started walking (3, with a walker, 7 without, for the record).

    At the moment, he is one of my granddaughter's few fave people, so I'm a little worried that he'll take it harder once she gets a little more independent.

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  6. Just maybe Max is so perceptive that he just wants the reassurance that Ben's abilities will not make him "better" than Max. It will be a forever thing that he compares himself to Ben. I love Max and wish he could know my grandson Jack in California. Max is going to be so lucky to have Ben in his life.

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    1. Susi....
      "It will be a forever thing that he compares himself to Ben." Agreed. I have spent far too many years comparing myself to my intelligent, capable, wonderful youngest sister.... I do not wish that on Max.... Or anybody.... Because Max is intelligent, capable and wonderful in his own Beautifully Unique way!! ;)
      Love you later, Raelyn

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  7. I know that I walked late and didn't start talking till I was almost 3. I couldn't hold a bottle either, but now I can hold a cup very well.

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  8. I think it's important to remind Max that even though he had to work harder to do some of the things that Ben does now, there's nothing wrong with that. Max knows he has CP and that it is harder for him to do some things, and he already knows he is a great kid! :)

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  9. My daughter had a hearing impairment that went undiagnosed until age 2 and wasn't corrected until age 3. She had two words at age 2. She screamed non-stop. She threw herself on the floor. She engaged in behaviors that made no sense to the rest of us. Her sister is 12 months older than her and it made a direct comparison on how different her development was to a normal path. I made her a book on Shutterfly when she was 5 that talked about her story. I included pictures of her crying (there were lots to choose from) and text about why she was so unhappy and frustrated. Pictures of her on days of her surgeries and taking audio exams are in there. I put her milestones in when she made them. I included pictures of her with her speech therapist. I talked about how proud we were of her for working hard at her speech when most kids don't have to put any effort into it. She's eight now and still loves that book. She proudly shows her friends her book. I think it helped her learn to tell her story. She has no shame about her disability and I actually think she is somewhat proud of what makes her unique. She should be.

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    1. I'm 17 and I was diagnosed with hearing loss at 5. This made me cry. Keep up the good work, you sound like an incredible mom

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  10. It was never a secret that I am different... I have a different disability but definitely developmental... I hope all goes well.

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  11. He seems like such a happy boy, you are a wonderful mother. It is crazy to think back to the overwhelming feelings when Max was a small child. Your passion has come a long way and it is amazing to see where he is at now. Thank you for your inspiring posts.

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Thanks for sharing!



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