FACT: Parenting is hard as hell. What's hard are things like this:
- Trying to get a four-year-old to take a full teaspoon of wretched, wretched Augmentin twice a day. (Tip: mix it into about a quarter cup of pureed strawberry jam. She still hates it, but with repeated high-fives and praise for being such a big girl who swallows her medicine, she chokes most of it down.)
- Turning off the tv. Maybelle often feels that this is an outrage that devastates every ounce of her being. There are tears. There's negotiation: "TV on! One more Dora!" Fortunately, she usually moves on from this outraged devastation within a few minutes.
- "Oh, God. I poop in the bath."
FALLACY: Parenting a child with Down syndrome is so much harder than parenting a typical kid. Maybelle's my only child, so I can't speak for everybody, but it seems to me that most of the hard stuff about parenting Maybelle is stuff that's difficult for all parents. Nobody likes cleaning poop out of the bathtub, and it did take Maybelle a bit longer to learn to use the potty than many of her peers, but it didn't take her that much longer. Being Maybelle's mother isn't qualitatively different than being the mother to any other unique person in the world.
I'm interviewing parents for my book A Choice with No Story: What Prenatal Testing and Down Syndrome Reveal About Our Reproductive Decision-Making, and one dad said, "the hardest part about being a parent isn’t her
diagnosis or medical condition or cognitive delays or what have you, it's
really about dealing with acceptance in society." I agree with that: Maybelle's differences are simply differences. It's societal stigma that frames those differences as "problems," and that stigma creates problems for me as her mother.
PHOTO: How cute is this?
So, so, so true! Your dad says parenting Maybelle is even easier than some kids!!! :-) What a good post, Alison.
ReplyDeleteYES. People say to me all the time, "It must be so hard to have a kid with special needs." Well, actually, my daughter has a typical twin sister, and guess which one is "harder" to parent most of the time-- Etta, who does NOT have spina bifida, but who is a very spirited person who likes to scream and dislikes sleeping. I know I have to be careful not to talk too much about how sweet and easygoing Claire is, since those are also stereotypes of people with disabilities, as if they don't experience a full range of emotions, but Claire is just an easy person to be around, most of the time. Parenting her is largely a delight. Therapy appointments and doctors appointments and potty training that maybe won't happen are a drag, but so is getting up in the middle of the night with my screaming typical child, or attempting to feed a typical child who will not allow herself to be spoon fed. Parenting is in itself both hard and delightful. It depends on the child and the minute, not so much on their physical and cognitive abilities.
ReplyDelete"Parenting in itself is both hard and delightful." YES, exactly!
DeleteDid Maybelle really say "Oh God, I poop in the bath?" That is hysterically perfect. Yeah, I think the thing I worry most about for Maybelle -- and you -- is societal- and peer - acceptance. If anyone is mean to her, I just don't know how you would stand it.
ReplyDeleteYep, she did say that, and I said, "Yeah, I see that. Okay, now we have to get out of the bath..."
DeleteShe's definitely going to have to learn tools for dealing with people's discomfort and poor expectations. Fortunately she's not having to do that yet--four year olds seem quite comfortable with her!
Chiming in and high-fiving that dad with a 'the hardest part about having a kid with Down syndrome is other people'. And not sugarcoating or lying one bit.
ReplyDeleteThat is definitely SO cute, and I do love your outlook and beliefs. I hope you'll stop on over at my blog and chime in with your point of view --
ReplyDeleteEVERYBODY should stop on over at your blog because it's fabulous.
DeleteThe moment I learned of Maybelle's arrival, I marveled at her NAME, not so much the missing chromosome. I cried happy tears and sad tears, knowing from the bottom of my soul, Alison, that your daughter Maybelle would make her mark in the world. All I could really think was, "OMG, this beautiful child will enrich the lives of women all over the globe!"
ReplyDeleteShe looks so big in this picture! Since Kayla isn't my only child, although she was my first child, I don't see a vast amount of differences in raising Kayla and her typical-developing brother.
ReplyDeleteSo far the greatest difference that I can see doesn't revolve so much around the actual parenting part; but the educational aspects. With Lucas I'll just register him for school and that will be that. No questions asked. With Kayla, I have to attend endless meetings discussing where is "appropriate" for her to be educated and I have to, basically, fight, for her right to be educated in the same classroom she would be in if she didn't have an intellectual disability. But, I digress, because I'm a little bitter right now.
Also, the mention of your book reminds me that we've briefly chatted about me being interviewed for it - are you still doing interviews or are you done w/your book? If you're still taking them, is there a list of questions you can email me?