Max is fond of asking me to say "Max is getting a Cars 2 Talking Lightning McQueen for his birthday present!" multiple times throughout the day. I would suspect this is a government plot to drive me crazy, except that our government isn't open right now.
Saturday night, I reached my limit. We'd had a long day. Dave was away, traveling for business, and I was a mom of the exhausted variety. So when Max said "Cars 2!"—his usual prompt—and looked at me expectantly, I blurted, "Max, sweetie, I am a little tired of talking about Cars 2 Lighting McQueen, which you are getting for your birthday, could we not talk about it for awhile?" Max just stared at me—not angrily or sadly, but curiously—and actually didn't ask again the rest of the night.
Just. Like. That.
There are times when it becomes startling clear that I have different expectations for the kids. Sabrina has gotten into the habit of asking for a Butter brand sweatshirt. Those things cost a hundred and up, and I have basically explained to her that she will get one over my dead body, which gave her pause, but just a little. She keeps asking and asking and I will say to her, "Sabrina, please stop asking! It makes me think that you are not listening, so let me just say again that I am not going to spend a hundred dollars on a sweatshirt."
I don't hesitate to ask her to quit talking about the sweatshirt. But Max, I've indulged, and it's got nothing to do with the fact that the toy he wants is reasonably priced. Repeating stuff, I've figured (and the neurologist has told us), is how his brain works. A few years ago, he loved to say over and over, "Max eats spaghetti with sauce!" and there was no stopping him until he grew out of it.
Part of children's natural development is learning that the world does not revolve around you (although I know adults who didn't get that memo). Growing out of the ego-centric phase can be harder for both kids with special needs and their parents. Max has often been the center of our attention because he's needed so much help, everything from holding a cup when he drinks to pressing buttons on toys. Although he still needs assistance with activities involving motor skills he's maturing in other ways, especially with social stuff and reading emotions. The other day, after he'd been screeching about something and he saw me get upset, he said "Sorry." And he meant it.
I am so used to working around Max's quirks and challenges that it had never occurred to me to ask Max to ease up on the Lightning McQueen talk, or that he would oblige.
Max did bring up Cars 2 Talking Lightning McQueen the next day, but far less than he has in the past. He clearly understood I was less than enthusiastic about constantly discussing it. That said, he spent part of the morning at a program where he charmed someone else to talk about it and even write it out for him. In Play-doh, no less.
A work in progress: Max, parenting, life.
My daughters are only 23 months apart, the youngest is Brielle, with moderate cerebral palsy. Even at 19 and 17, I sometimes forget to FIRST assume I can use the same parenting rulse UNTIL otherwise I can't. Good reminder, even with the simplest of things!
ReplyDeleteOh, things like that frustrate me so much sometimes, because I like hearing my kids laugh and making them happy, and I feel guilty when something simple that accomplishes this starts grating on my nerves.
ReplyDeletei suppose it's understandable that you would indulge Max but you have to stop doing that and start treating him like you would a neurotypical kid because the world certainly won't indulge him.
ReplyDeleteIt is so easy to fall back on the routines of life with our little ones, while forgetting that they are quickly becoming big ones who may not need those routines anymore! Happens to me all the time!
ReplyDeleteGreat post with a hilarious Play-Doh ending -- you can't make this stuff up!
ReplyDeleteI have often thought that a keychain with phrases that repeat would ease my parenting quite a lot!
ReplyDeleteWell DUH, Nisha. Ellen's point is that with a special needs child, it's hard to know exactly when it's developmentally appropriate to do that.
ReplyDeleteSue
Anonymous, that response is totally uncalled for. Nisha knows a thing or two about how a parent should challenge and have high expectations for a child who has disabilities. She is a young woman with cerebral palsy who is very reflective and intelligent and, by the way, is changing the world by raising money to build a well in a community without clean water, fighting human trafficking, making and distributing sandwiches to the poor in her own community in South Africa, and writing a very thoughtful blog. Her point is that it is always "developmentally appropriate" to have high expectations for your child and not give into their every whim or quirk, because they have to get along in a world that will not indulge them and give them everything they want.
DeleteMy Z does the repeating thing and I try to go with it or ignore it, but can only do that for so long. I do get frustrated with him, even though I know that he cannot help it. But after 15-25 times in one day I have to ask him to STOP saying it. Then, he starts whispering it or saying it under his breath. Alas, I know that he cannot help it and it is simply a part of who he is.
ReplyDeleteI've been so busy with my own little dude lately I haven't had the time to swing in and read your posts. I'm glad that I did today because I totally had the same thing happen the other day. It's hard to know where the lines are , but I will say, the little surprises like that make the rough times seem so small. :)
ReplyDeleteI love your posts! You put my life into words. Only instead of Cars 2 we have Cows - lots and lots of cows. Trying to explain our lifestyle to people that don't have it is exhausting, I often try to avoid doing it now. Cheers to you for keeping me smiling and feeling understood.
ReplyDeleteI so get this. I know I have different standards for each of my boys, based on their needs, yet I need to work on seeing what happens if I don't cut my middle son quite as much slack.
ReplyDeleteI am a supertaster, so I am less likely to try a new food. I also love music, animals, science, and I rarely talk about anything else. When no one else likes this, it is frustrating.
ReplyDeleteI have wondered how our parenting styles will differ as our youngest gets older. Double standards? Maybe it is simply adaptive parenting? I completely understand the doulbe standards though. My wife and I often evaluate our parenting with that in mind.
ReplyDeleteOur oldest, Fayth, steals my heart. She makes me smile and laugh sometimes when I discipline her. I find myself walking out of the room to recollect my composure. Maybe it is because she is our special little angel or maybe it is a father-daughter deal. Who knows? Time will tell. I doubt our youngest, 8 month old son, will get that response from me though. :)
Thanks Ellen.
Thanks for this post. It is not an easy act to juggle! I find we have loads of those repeated conversations ("Toum!", "yes, a t-shirt" "blue!" "yes it's blue/red/orange etc" is a classic). I guess if I treated her like she was neurotypical, we really wouldn't be able to interact at all, which would be a loss for both of us. Got to find the balance.
ReplyDeleteI just read this to my husband and we laughed! Ours is 20 and this is exactly what we go through! She has no sense of time, so when she decides she wants something we hear it every day for months. We've managed to turn it into a goal for good behavior reports with her teacher. But this was a wonderful post because sometimes it's enough just to know you're not alone!
ReplyDeletethank you so much for your post. every once in a while my son does something that makes me realize that i set the standard too low for him, yet again. i feel so guilty about it and vow not to do it again, but then it happens again. thanks for reminding me that we're all doing our best and i'm not the only one who makes this mistake.
ReplyDeleteand i love Max's resourcefulness in getting someone else to write it for him in playdoh. what a great kid!
Nisha, with all due respect, I disagree. While the world will not indulge on him (I agree with not indulging on any child), Max will not become neurotypical just by treating him like he is. He has to learn that the world doeos not revolve around him, and indeed he's showign Ellen that he has the capacity to learn this, but it's not like developmental expectatiosn need to be exactly the same for two different children (whether they have disabilities or ust are differently-paced withint he realm of normal). I am a person with disabilities too and was raised with non-disabled expectations. It didn't make my autism go away. What it did was to set me up for constant failure. I'm not saying that we need to indulge on our disabled children, since indulging is not what we should do with any child as I said. It's accepting that they have limitations and nonetneless challengign them to use their full potential. I know you weren't meaning to say Max isn't disabled, but your ccomment "treat him like a neurotypical" does somewhat ignore the fact that he isn't neurotypical and will never be neurotypical.
ReplyDeleteWe weren't able to have another child and my frustration is often that I have no benchmark. Is my son's behaviour because he is a willful 6 yr old or is it his additional needs?! Isn't it funny that we can be happy because our children are being naughty! :) thank you again for articulate and intelligent post and comments
ReplyDeleteYes, it takes longer for special needs kids to grow out of the egocentric phase. It took us many years to realize the fits our son had on his siblings' birthdays was NOT a coincidence. He was the center of attention for many years, and with his medical needs (CP, g-tube, etc) that was necessary. But he did have a tough time with "competition". Eventually, (and with ongoing help from a psychologist) he has adapted and fortunately, his self-help skills improved as well. Good for you, Ellen, to realize you can expect more. I think we are all pleasantly surprised when our special needs children display new levels of maturity.
ReplyDeleteYou are so right. Parenting is a work in progress. Lindsey is 33 and it is still a work in progress for me too. Like you, I'm often surprised when Lindsey will cooperate with a request I make. Something that has set her off in the past, now seems acceptable. I love it when she surprises me. Recently, she gave the most excellent marriage advice after surviving her first year of matrimony. Sometimes, I'm surprised at how wise my daughter is. That is the best part of parenting, isn't it? The surprises. Thanks for sharing this story, Ellen. Enjoyed it.
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