Moxie, My Daughter with Down syndrome, Starts Kindergarten

Moxie starts Kindergarten today.

I wonder if she has been prepared well?

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We started off our road with her Down syndrome with all the therapy that was recommended.

Shaker things and playmate with toys and a therapist to watch her bat stuff? On it!

 

Those pre-speech banana exercises? Done!

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Things with tassels to stimulate and do something else really (supposedly) awesome? Got that checked, friend!

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Blocks! Sand! Brightly-colored chewy things! Musical instruments! Done, done and done!


If there was something in The Book or the Baby Center Down syndrome Forum to do, it was DONE.

And then, I dunno.

I just start seeing things about her that were clearly related to Down syndrome.

I wrote the post, “More Alike Thank Different… and Yet..” I became much more interested in learning about the child that Moxie is, rather than molding her to something that professional therapists were encouraging her to be.

Mikey and I just really let her  go. We let go of all that therapy and just her be a kid.


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This is hellaciously difficult as a parent of a child with Down syndrome, you know.

a) Because we really don’t know a whole lot about the “syndrome” part of “Down syndrome” – what makes it the syndrome, exactly? And is not engaging in shit-tons of therapy really going to hurt?

b) Therapy and trying to “fix” Down syndrome is shoved down our throats at every turn.

c) We are parents who love our child – and would not want to hurt her. Making the choice to not engage in therapy means that our belief that the therapy really didn’t have much to offer her had to be stronger than our belief than it did. But we don’t actually know that for a fact, as we don’t know that much about the syndrome itself, and how hers interacts with all that therapy. We’re guessing here. The therapists are guessing too! Are they the ones who are right? Who knows.

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We just continued our lives, sans therapy.

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As a family, we are pretty committed to being free and living authentically.

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And travel. Always travel!

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proud parenting moment! moxie trying a roasted grasshopper!
proud parenting moment! moxie trying a roasted grasshopper!

Koh Chang Thailand by Meriah Nichols-19Bayan at Angkor Wat by Meriah Nichols-58Bayan at Angkor Wat by Meriah Nichols-39Bayan at Angkor Wat by Meriah Nichols-26Bayan at Angkor Wat by Meriah Nichols-15Meriah Nichols Ta Prohm Angkor Wat -45Meriah Nichols Ta Prohm Angkor Wat -34Meriah Nichols Ta Prohm Angkor Wat -6Meriah Nichols Amphawa Floating Market-22
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We may never know what the “right” thing to have done was.

We have taken her to more than a few countries, tried to teach her ASL as well as English. We’ve indulged her in her favorite shows, and she’s certainly learned a lot of the three R’s through them!

We ditched all therapy except for speech therapy and the horse therapy we were able to take advantage of with her preschool teacher. We did not engage in flashcards. Or anything of that sort, really.

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We did give her a ton of space and opportunity to be free. Maybe even a little wild?

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"the hillbilly hot tub"
“the hillbilly hot tub”

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Working on the idea that Down syndrome isn’t a bad thing, and coming from a perspective of embracing her extra chromosome and hoping that she will lean in and want to be defined by it, we choose only the therapies that obviously help her.

And that’s it.

Meriah Nichols -1She had her first day of Kindergarten yesterday!

She has the best aid in the world – a woman she has known and loved for years now, who is like familyMeriah Nichols -2

She has a sparkly teacher, friends in the classroom. She has an IPE that focuses on speech – because she still doesn’t talk all that much.

She has so much going for her, including a school (and community) that values her, sees value in her.

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She is a really happy child. Not happy because of something to do with Down syndrome; she’s happy because her life is overall, a happy one. She’s happy because she is learning, growing and moving in an environment that suits and embraces her.

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Back to the question I asked in the beginning of this post, “I wonder if she has been prepared well?”

I don’t feel like weaving an answer that I am not certain of. I can’t say for sure that she is. I can’t say for sure that not engaging in tons of therapy was the right answer. I can’t say that not doing the flashcard thing and being more of a sloth-mama than a tiger-mama was the thing to do.

All I know is that everything feels good to us.

Meriah
Meriah Nichols is teacher and artist who lives in a yurt off the grid. She is deaf, has 3 kids (one with Down syndrome) and a lot of chickens. She writes about travel, disability, and getting dishes done. She likes her tea Earl Grey and hot.
Meriah

@meriahnichols

#deaf mom, teacher & #disability activist, living in a yurt #offthegrid. 3 kids (1 with #downsyndrome), a camera and a lot of chickens. Never a dull moment
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5 Comments

  • It’s perfectly normal for a parent to wonder, “Did we do the right thing? Are we doing it?” Especially when the child is “different.’ It seems to me that you HAVE been doing what is “right” and “best,” by letting her have some structure (the horse and speech therapies) while giving her freedom to be a regular kid. Hopefully, kindergarten will be a good adventure for her, one of many, as she grows up.

    The photos tell an eloquent story of their own!

  • Hi Meriah!
    I love this so much! Every parent goes through the gauntlet. Am I doing enough? Is this the right thing to do?
    Am I doing too much? All of the research into early childhood development, regardless of abilities is mind boggling, not to mention advice from grandparents and well meaning friends. Do what feels right and tell the rest to ef the heck off!
    Kudos to you and your beautiful family ? ~Vicki Ayala (Linda’s Sister)

  • I love your blog and can really relate!! We sent our four year old to her first day of pre k this week to a private school without an aide. Not recommended for Down Syndrome kids in our school system. And I feel the same about therapy. I always wonder if I could just have been her mom and bounced her on my knee rather than stress out to keep the appointment with the therapist to bounce her on a ball, would she have been better off. I believe I would have been more sane. So this summer we decided no therapy, which we usually only do speech in the summer anyway and amazingly these are the words she said today that are new after a summer of no therapy – “Shirley temple,” “city park,” “swimming pool,” and “albino.” ( we have an albino deer at the park). So we are capable as parents aren’t we. but it helps me to read your blog and know that I’m not alone this. Thank you so much for sharing your thoughts and your life with Moxie!!

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