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From the mailbox

29 Dec

If you went through my comments section recently, you can see I caught the eye of a group of people, who now have a vested interest in my daughter’s well-being. Which is awesome. I don’t really subscribe to the “us vs them” mentality, and every comment hasn’t been wonderful (by the way, props to my regular readers, you guys are so awesome, people thought I was mega-curating the comments. No, it’s just that my usual commentators are freaking rainbow unicorns! Thanks for that!)

But, since I’ve put a little bit of our world out there on the internet, I feel like I should address some of the issues brought up. I shall be paraphrasing the questions that were thrown in my direction.

“Why can’t Maura speak for herself?”

Well, she can, in a limited way. Her sister put it best – “Maura doesn’t have a speech issue, she has a communication issue.” And it’s true. Maura struggles with concepts – like time, or me taking a friend to the airport vs. me going away on a trip after spotting a suitcase, or even the basics of “yes” and “no” (though that’s greatly improved over the past couple of years.) When she talks, it’s at the most, five word sentences, like “I’m hungry. I want food.” Now, if you say “What kind of food?”, her answer could be “Yes.” – because those W questions still allude her. Her expressive language is behind her receptive language, to get really technical with you. So she can know what she wants, but not how to express it. My job is to interpret what she’s saying, and help her learn how to more clearly express herself.

“You need to get  her a communication device!”

You’re kidding, right? Do you really think that never occurs to parents of non-verbal kids? All over the internet, people are sending us stories about a teen who’s voice became “unlocked” after finding a magical program to allow them to finally communicate. It is the stuff of dreams for us.

Here’s the catch – you can give the kid a communication device, but that doesn’t mean they’ll use it. That’s where we’re at right now. Maura has one. The speech therapist is working with her on it, and is optimistic that Maura will at some point, get the hang of it. I thought “Oh, once she sees how she can tell us what she wants, she’ll be all over that like white on rice!” I thought wrong.

“What about sign language?”

That would actually have been awesome, because Maura’s great-aunt is deaf and uses signs, and Maura’s two aunts and grandma also speak sign language. It was already in the family.

Two problems –

First, Maura has fine motor skill and motor planning issues. It took her six weeks to be able to correctly sign the word “play” – and at that point, thanks to all the repetition, she had learned how to say it. So her “rate” of learning signs and speaking are the same. And some signs takes too much effort for her to make, so we’d be where we are now – her doing signs that only I could interpret, not the general public.

Secondly – well, it helps if the school’s on board with it. When she first started school, another parent and I pushed for sign language to be used at school, but the special ed director at the time nixed it. Talk about disheartening, as everyone else was on board. But no, Maura’s time was better spent going to anti-drug rallies…you know…after taking her drugs that kept her brain from seizing…always makes me giggle.

“Well, there are more forms of communication!”

You’re right. Our interpretive dance skills are fabulous. Sadly, the rest of the world hasn’t picked up on it.

“How do you even know Maura loves you if she can’t speak?”

Well, how do you know anything without meeting the girl? Because if you met us, you’d see that she does seem to exhibit a slight affection for me sometimes. Oh, and because when she’s not giving out hugs or kisses, once in a blue moon she’ll actually say “I love you Mom/Dad.” – though to be honest, she’s more likely to say “I love Store!”

“Have you considered Ehlers-Danlos Syndrome?”

(apologies to this one, I meant to email you back only I clicked on the email and lost it some how.)

Yes, I have. I asked about it at one point, because Maura is a bit hyper-flexible. But she’s not hyper-flexible enough to cause worry. She’s never dislocated anything, there’s no family history, she takes stitches well. But it’s worth mentioning again to the next doctor, just in case she has a weird case of it, so thanks for bringing it into my sight lines again!

“You don’t need regression to be autistic.”

You’re right – but it’s a pretty easy to spot sign, and everyone asks about regression, so I throw it in there all the time. Also, no therapist, teacher, neurologist, or specialist has said “Wow, have you considered autism?” I’m also not “scared” of autism like other parents – there’s Anxiety, Asperger’s and ADHD in our family, because we’re brillantly quirky like that, so another “A” isn’t scary to me. I’ve done a lot of Dr. Googling in the past, trying to figure out Maura, and there’s a whole lot of scarier shit out there that she could have, life-shortening scary shit.

“So you polled her siblings? Didn’t you ask HER how she felt?”

First – I polled “informally” – as in, two of the siblings were there, I asked them how they felt. I have also asked Maura how she feels about it. This is what I got.

(Kiddo’s first butt joke. I blame television.)

“Do you poll your other kids on embarrassing things?”

Well, first, I don’t find Maura’s disability embarrassing. I don’t find Maura any more embarrassing than my other kids, and they all probably find me more embarrassing than them (though my other daughter and I can totally own up to doing a little happy dance at the movie theater when we went to see the new “Star Wars”.)

Conversations that have happened in our house –

The older three deciding which sibling should be sold on Ebay.

The older three discussing which sibling will be eaten first in case of apocalyptic scenario.

The older three trying to figure out which one of them was the most annoying (I solved that riddle by saying “You’re all equally annoying!”)

So as you can see, we’re a household that likes asking different questions. We also tell tales on each other. Sean used to lick things when he was a toddler (he tried to lick the cat once, but there are some things we just don’t do.) As an infant, Miriam had volcanic poop that defied gravity, which lead to the time I went to bathe her, kissed her on her cute little noggin, and realized I kissed a spot of poo. Sean and Maura have both drank Fabreeze. I had to call Poison Control when a couple little boys played light sabers with bubble lights and the lights exploded, getting the liquid in someone’s eye (btw, Poison Control had no clue what was in the bubble lights.)

Ah, good times.

“When Maura is able to write for herself, whatever will her narcissistic mother do?”

Um…lots of things. I’d like to paint more. I’d like to write more. I have more topics in my head besides Maura, which, if you poke around here, you’ll realize that. I also write (though not yet published) fiction. I come from a line of artists and storytellers, so I’d just keep doing what I’m doing. Maybe get therapy for my obviously undiagnosed-except-for-by-strangers-on-the-internet narcissism that I refuse to acknowledge.

I do embrace my sarcasm though. I know, it’s hard to tell.

“But Maura should be speaking for herself! You can’t speak for her! You don’t understand her disability!”

Again, thank you strangers-on-the-internet, for pointing out what I obviously can’t see. Except, as someone who DOES know me and my daughter well pointed out – which part of disabled do you not get? Is it really advocacy if you downplay my daughter’s type of disability? Are you a better voice for her, when you poo-poo her actual abilities? If you can only accept that my daughter must have a voice inside her head that I’m squashing, that she’ll obviously go to college someday, that she will be able to leave me and join you all someday, then you’re not helping the world accept her for who she truly is, because you’re not accepting her for who she truly is.

There are ALL sorts of disabilities. Physical ones, cognitive ones, mental illnesses. My life with my daughter isn’t the same as my friend’s life with her child with a physical disability, and neither are like Maura’s great-aunt’s life with deafness. To know one person with a disability is to know one person with a disability. Yes, many things overlap, but many things don’t. You can discount IQ scores, but in our case, that IQ score actually helps get Maura an education that helps her mature and learn and thrive. You can say I shouldn’t speak for my daughter, but I can say you don’t speak for her either. Not if you can’t accept her for who she is, and for what kind of disability she has. If you’re only fighting for inclusion in education, then you’re not trying to get what’s best for my daughter and others like her. If you’re fighting for choices in education so that each child can get the education they need, then you’re working with us.

It’s not all black and white. Not life, not disabilities, not anything I’ve come across.

 

 

 

 

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17 Responses to “From the mailbox”

  1. franhunne4u December 29, 2015 at 3:56 pm #

    I do not really get those “concerns” – and I would even call them concern trolls … You ARE Maura’s voice. For now. If that ever changes waits to be seen.
    If your blog was about making fun of Maura’s disability, I might understand them, if you showed pictures of Maura that were embarassing, I might. But you don’t. I read your blog for a while now. Even when you talk about less comfortable things (like poop) you do that with love on your mind. You laugh WITH Maura, not about her. And if you laugh then about the situation. To see the funny side of things is a survival strategy. Do not allow those concern trolls to get you down. You write about Maura to give her a voice, to explain to the world that we should all be a little bit less judgemental. I learned a lot from your blog.

    • phoebz4 December 29, 2015 at 3:59 pm #

      Don’t worry, I have realized I’ve developed a thick skin and great sense of humor. And I appreciate you readers. You are all awesome (and I must say, a diverse crowd!)

  2. 3rdgenerationmommy December 29, 2015 at 4:09 pm #

    I wish that I could like every answer that you gave to all of those questions! Sadly…1 like is all I get lol
    Thank you so much for this!

  3. suzanneyoung253762575 December 29, 2015 at 4:35 pm #

    I cannot even believe people can say that to you (speaking for Maura) rather than letting her do it herself. While I have been horribly remiss in writing about my daughter, there is no way should could do it herself. She is a wiz on the iPad and iPhone, but she cannot string a sentence together as she is very limited vocabulary and cannot read (she has sight words memorized) but that is it. And why is it bad that we would want to share/explain/introduce our special kiddos to those who may not encounter or understand someone with a cognitive delay. Gah!

  4. Jodie December 29, 2015 at 5:13 pm #

    Well said 😉

  5. Becky C. December 29, 2015 at 5:13 pm #

    Bravo! Beautifully written! As regular reader, I love that you give ALL your kids a voice bc life, no matter how you spin it, disability or not, is never all sunshine and rainbows. You take the journey God gives you and you make the best of each day, hoping you leave this world a little better than you entered it. That, my friend, is what you’re doing. Kudos!

  6. Darcy Pennington Arnold December 29, 2015 at 5:17 pm #

    You give them hell, Phoebe 😂. You are not only Maura’s voice, you also give some of the courage to speak out for our families!!!

  7. Karla December 29, 2015 at 5:54 pm #

    I’m sorry people are butts (that may be what Maura was alluding too?) but I’m glad you take it with a grain of salt, humor, and a heaping dose of sarcasm.

    I loved Maura’s video, she is a delightful cutie!

  8. cathysanfordtn December 29, 2015 at 6:27 pm #

    Oh my, you are FUN! I wish I had time to follow you more often…sarcasm is a special language that is seriously under appreciated by the masses. Keep on doing your thing, to heck with the naysayers!

  9. Bobbie Heft December 29, 2015 at 8:04 pm #

    I had wondered how you were Phoebe! (Thanks to Ann reposting one of your blogs, I was able to “catch up” on how you’re doing) I have read the Maura stories and can actually hear you speaking. She sounds like an amazing kid, and so do ALL of your kids. They sound like they can speak openly to you, and do. Kudos and props, many of us can’t get our kids to do that. Glad you’re back stateside, maybe someday I’ll get the opportunity to pick your brain about what it’s like to move over seas. I’ve had a dying passion to move once Bob retires. (It won’t happen soon enough!)

    • Patsy Ray December 29, 2015 at 9:14 pm #

      Write on Phoebe, write on!

  10. Christine Phelan December 30, 2015 at 12:22 am #

    Beautifully said Phoebe…. Keep on keepin on. Chris

    Sent from my iPad

    >

  11. Denise Chavez December 30, 2015 at 12:26 am #

    As the kids say “there’ll always be haters”.
    You bring a voice to so many of us and our travels with our children. Keep writing and sharing because it is something you enjoy and have a talent for. Maura is lucky to have a mom like you and sibs like your older teens.
    Thank you for giving me inspiration!

  12. Anne WAnsing December 30, 2015 at 12:46 pm #

    I love that you called her disability a “glitter bomb”. It describe my son’s disability to a T. I hope you don’t mind if I steal that term.

    • phoebz4 December 30, 2015 at 1:03 pm #

      Go for it. And for the record, I love glitter. I could live in glittery surfaces, lol!

  13. Liz December 30, 2015 at 10:26 pm #

    Well. I am a diligent lurker, but have never commented before. I feel compelled to now as a result of reading this post. As a pwd, not cognitive, but nevertheless a disability, I feel it’s more than fair for you to blog about your daughter in the way that you do. This blog celebrates Maura as a whole person! Being honest about the positives AND the negatives of Maura’s disability is just being real. My daughter (turning 1 tomorrow!) is mspi and has reflux, and mommy blogs and groups have been a huge help to me, so I can only imagine the relief moms of cognitively disabled children feel when they stumble across your blog. Keep up the good work, you are a great writer and a wonderful mother!

  14. Sara December 31, 2015 at 7:45 am #

    I stumbled on your blog because a friend of mine has a child with a disability and I read it because it’s so well written and I think your experiences are important and should be written about. So I just want to thank you for writing this blog. It’s important for both people with disabilities and those without. x

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