Down syndrome

The Elephant in the Pool.

We all went to the pool on Saturday. I love going to the pool with the kids. They use Lance and me as jungle gyms. It helps me to confront my hatred of being touched.  You know, because I’m ALL about confronting things I hate. 

Casey is the least amount autistic at the pool. Sure, he’s still got all of his charms and fixations, but all of the tough parts about autism seem to drown in the pool while we’re there. He makes friends. Sort of. It’s awkward as hell, but he’s happy there. And he’s trying. The elephant that follows him around is much smaller, barely noticeable, when he’s at the pool.

Going anywhere with Abby is different. This time in the kiddie pool I found myself really pissed off at the gigantic elephant that I’m forced to confront everywhere I go. It’s not that I mind talking about it. Not at all. But this time at the pool, for the first time, really, I just wished I didn’t have to. I didn’t have to smile and say, “yes, she has Down syndrome.” Or to the two year old who could carry on a full conversation: “My baby is your age! Why doesn’t she walk or talk? Because she has Down syndrome, she will soon…”

I wished for a minute that Abby could just be Abby. That she could run and splash with the other girls her age. That there wasn’t that second sideways glance by all the parents who see her when we walk in. There wasn’t an awkwardness in the people trying, as nicely as possible, to be friendly and accepting. I wish we could just have a conversation about how bratty our two year old girls are, without people rolling their eyes at me…because, you know, 2 year olds with Down syndrome can’t be bratty.

People are really great to us where ever we go. Abby’s a rockstar. There just are days where I wish we could be any other family walking through the grocery store or hanging out at the pool. Where we didn’t always have an elephant or two in tow.  Where we don’t get noticed because Casey can’t control the volume of his voice or because my daughter has almond shaped eyes.  Where people would stereo type us based on my poor parenting or hygiene skills, and not because my kids have special needs. So much is assumed when I tell someone that Casey has autism or that Abby has Down syndrome. I’m sick of explaining that they have their own personalities. Casey is affectionate. Abby can be a total brat.

I feel like with every post about Down syndrome I’m supposed to end it on a positive note. That I have to for whatever reason say, “But it’s such a blessing!” That it’s expected of us in the Down syndrome community to always be positive about our situations. Yes. It is a blessing. Any kid is a blessing. But there are more than enough days I’m not completely positive about my regular kids, so I reserve the right to be able to end this post the way it began.

I’m bored of the elephant at the pool.

20 thoughts on “The Elephant in the Pool.

  1. I have three other close friends with children with Down Syndrome. They have ALL at some point confided a version of this sentiment…..that the novelty gets old and the being noticed gets old, and the constant explaining gets old, and that they would love, for just ONE DAY to go somewhere and blend in completely. FWIW, I think it's probably better for the special needs community at large if people don't always end every thought with a positive affirmation. We know you love your kids with all your soul….feel free to be honest about the hard things. ๐Ÿ™‚

  2. Lexi the next time your at the pool you should have laminated buisness cards that have an elephant and your blog website. Whip them out of your swimsuit top and say this is what I really think about Autism and Down syndrome. Maybe this will shock them into better behavoir. We all have elephants in the pool some are just less visable.

  3. Thank you Amy. I wonder if I know your friends with Ds kids. It's a small world in the Ds community.Thank you for being supportive. I love you for it.

  4. We avoid the pool for the most part– especially public pools. My kids all look and behave like typical children of their age. I however do not- the pool freaks me out (and Ry's neurologist didn't do anything to ease the freakout– if anything she made that one WORSE). I follow him around like a crazy hyper vigilant hover mom in the pool because if he were to have a seizure in the pool, lake, kiddie pool, BATHTUB, etc. and I am more than an arms reach away– well… The outcome would be far worse than if I were right there to see it coming and get him out of the water (and the neuro said– never be more than an arms reach away when in the water- and never turn your back). So, my elephant swims underwater, completely unnoticed– except for my perpetual need to be "right there." And I have been asked why I didn't "chill and let him enjoy the water." Well, because there is a chance that could be a fatal mistake (that I have been warned to avoid), even with floaties or a life jacket because they can't promise to keep his face out of the water if he has a grand mal seizure in the pool. That's why. I get your rant– to an extent. People ought to just know that every person is different from the person next to them and not every interaction needs to be a teachable moment. Families just want to relax and be, not explain who they are, what they do and don't do and why. I'm speaking from a point of view of having a kiddo diagnosed with epilepsy and a niece with a rare genetic condition that requires a g-tube for eating and a few other differences that people are quick to point out and ask about. I hear you.

  5. You always make me think just a little bit differently about special needs parenting. As parents of a child with autism, we get upset when we feel judged about NOT disciplining our kids. But for a kid with DS, it seems like others get upset if you DO discipline your child. It's such a funny thing – as if she has Down's so she can't help it, but somehow autism is something that can be helped, or overcome or whatever. Did any of that make sense? If not, never mind. Let's just say I know what it's like to want to blend in the crowd ๐Ÿ™‚

  6. You know, I'd say that they'd be afraid I was whipping something else out of the top of my swimsuit, but if you've seen me in a swimsuit, that's not much of a threat.People aren't doing anything wrong. I just wish for one day I wouldn't have to be the person who gives their kids a "teachable moment"

  7. It's the difference in being able to SEE the disability. I automatically get a pass with with Abby. I don't get that with Casey.

  8. As always, Lexi, thank you for your honesty. I feel like we get judged by "our" actions as much as our child's. Almost as if we cannot have a bad parenting day the same as a typical child. If we have a bad day, then all parenting of a child with special needs is awful and we are miserable. I would like to run errands without attention. Very rarely do we go anywhere without at least a few stares. Maybe we should all follow "my mobs mom" lead and dye our hair purple ๐Ÿ˜‰

  9. I appreciate your posts because they are very honest. Have you heard of or read The Accidental Teacher? It's a great book that I think you would enjoy. The author's son has autism and her writing about their lives is very honest and it is not a happily ever after type story, just an honest one. I've met the author twice and she's great.

  10. I love this post. And I can see where it would get so draining to have people expect certain things because Abby has DS. I understand in a way, but not all the way. It's like Jennifer said, with autism, the stereotypes and judgment are different, but they're still there. It would so bug me to never be able to complain about my kid's brattiness–I'm sorry. NO kid is an angel all the time. They're kids! Okay, I'm just babbling here.

  11. Your thoughts always are awesome in this space. And I agree that you always make me think about stereotypes I didn't even know I carried. You are an amazing mom. Not sure how to help then to tell you that you are a rockstar mom! ๐Ÿ˜‰

  12. That was and still is really the only thing that bugs me about Eva having Ds. How many times has she been invited to the home of another girl her age, just for a play date? None. We have sucky neighbors in that aspect.

  13. I love that you are the one that taught Kristopher so much about accepting people and who they are. So many people ignore our differences because of fear or stupidity. We were at costco when a little girl asked her grandma what is that tube. (Kamryn's NG tube) The grandma said it helps her breath, and tried to shoe her away. I whispered to her, that's the way she eats. She was satisfied and went off with her grandma. Kamryn's issues are not longer visible. Now I can walk through a store and only hear comments about how much hair she has and how lucky she is to have such long eye lashes. I have to stop myself from saying, "She had a heart transplant.(D****) Here let me give you her meds, they come with a price tag of lymphoma, bone marrow suppression and kidney failure." So how is that bratty 2 year old?

  14. I like it when you babble. Everyone says that we need to treat all of our kids the same, but the minute I yell at Abby I get harsh looks and whatnot. I guess that's sort of the case with Casey, too. It just depends on where we're at.

  15. Holy sheesh. That would be hard. I'm so ADD that I'd totally just lose track of the kid in my thoughts. "my elephant swims underwater." I wonder how many people this is true for.

  16. Your children are so darn cute they can't help but draw attention. However, I don't know why people don't think and use filters. heavy sigh

  17. My favorite is when little kids (5-9) have no filter and while you know you SHOULDN'T be mad at the questions you're asking, you secretly just want to smack them upside the head!

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