Without A Camp

I will never forget sitting with our neurologist in one of a dozen identical rooms with that geometric wallpaper following a chair rail around the perimeter. All three campuses have that same paper and somehow incorporate it into remodels and new construction. The design looks like something from my childhood. Do they have a stockpile? Do they special order it? He asked about Adelaide’s new words since our last appointment. As we started listing off the new words and how they sound, his face stayed very compassionate. But I could see what he was thinking behind his eyes.

Twenty-something slurred attempts at words that may or may not even have meaning to her. In 6 months. “Mama, she does well for being nonverbal.” Nonverbal? Suckerpunch. But she counts and sometimes mimics and says “eat!” But I already knew she was nonverbal. I just wasn’t using the word. I had intentionally not even whispered the label.

It was like getting the wheelchair. An admission of something I was secretly hoping would change overnight. When we were wheelchair shopping, I actually said to Dave, “We don’t need to get something that grows with her. She’s only going to use this for a very short time. She’s not going to need it long-term.” And Dave gave me the same look. The ‘oh honey’ look. He put his arms around me and I just stayed there. Finally admitting what I knew was true. “She may never walk. And if she doesn’t, I should get a chair that can grow with her.” And I found a chair, since we had to pay out-of-pocket anyway, that could grow with her until she hits double digits.

And then even strangers asked, “Does it grow with her?” and my answer of “Yes, it does. We were blessed to find one.” rolls off my tongue, while my brain shouts, “CAN’T ANYONE ELSE BELIEVE WITH ME THAT SHE WON’T ALWAYS NEED IT!?!”

And we started learning sign language before Adelaide was called ‘nonverbal’…as I bought dvds and bought books and bought flashcards, I kept saying, “She’ll talk someday. We are learning sign language for a season. A short season.”

Then, I posted in a Facebook thread about Adelaide being nonverbal and someone responded that she wasn’t truly nonverbal, because she says some words. I deleted my comment and instantly felt like I was without a camp. My daughter doesn’t talk. She occasionally says things she hears. She sometimes lets me know what she needs. But she talks less than her baby sister does. She isn’t verbal. And she isn’t nonverbal to a community of women who will never hear “Mama.” And I have heard it.

And a message from a woman I had never met confirmed our outlier status. “Don’t say Adelaide is nonverbal. My son has never said one word. He has never said my name. He is truly nonverbal. I read your ‘blog’ and saw that Adelaide talks. You don’t belong here.” Her choice of punctuation around the word blog was the cherry on top.

We don’t belong anywhere. Adelaide uses a wheelchair, but can crawl. She is nonverbal, but says HI! She uses a bottle, but holds it herself. She can count by 10s to 100, but won’t stop trying to eat stuff out of her diaper.

For now, we are part of the sign language community. Even though Adelaide has minimal hearing loss. We invest daily in learning signs. Practicing our alphabet. Finger-spelling. Because we don’t know if Adelaide will always be nonverbal, but she is now. And has been for three years.

We have a substantial library of sign language resources, and have invested in new materials every tax return. And we also used tax return money to buy our long-term wheelchair. And that’s our season. Buying things we may need for one year or a lifetime.

And we are special needs wallflowers. Up against that outdated wallpaper. But still making it work. And ‘blogging’ about every awkward step.

adelaide in wheelchair

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7 thoughts on “Without A Camp

  1. Linda Born says:

    My youngest son who is now 25 was essentially non verbal until he was 8. He started using echolalia sporadically as a means of communicating at around 3, his language really blossomed as he grew older. He communicates wants, needs and holds very short conversations. Stay hopeful ☺

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  2. Little Rhody Mom says:

    When I thought my child wasn’t developing typically, everyone told me “she’s fine” (subtext: get therapy). At three years old we found out her receptive communication ability was .1%. So I went from hoping that I didn’t have Munchausen by Proxy to wishing I did. I kept going to our Neurologist at Children’s Boston until they could tell me why and at 5 1/2 years old they could. But the more important thing they told me was how to work with my town to educate her. And how to be annoyingly persistent when advocating for my child. So my wonderful, happy almost ten year old, whose cerebral cortex does not process sound, speaks. Not clearly, and not with prepositions and articles, but she makes her point. And she reads, not what the other rising 4th graders do, but that’s OK. It’s not a race. When she started Extended School Year this summer she told me she wants to read because it helps her talk (and she’s absolutely right). My daughter is learning to advocate for herself and her education. I couldn’t be prouder.

    So you and I are in the same “camp” which is defined not by our child’s disability but by their mother’s hope. And as my daughter has taught me, hope and persistence run in the family. Best wishes to you and your family.

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  3. After reading this article on The Mighty’s Facebook page, I wanted to reach out to you because we too are in the wallflower camp. While my 22-month-old son isn’t low-functioning, he also isn’t “normal-functioning” either.

    He has chromosome 2p11.2 duplication, bilateral congenital cataracts, global developmental delay (nonverbal, hypotonia in feet/ankles and jaw, foot pronation, etc), “traits similar to that of autism” (no official diagnosis since no one in our area will evaluate him this young), sensory processing issues, and sleep problems.
    Despite his diagnoses and struggles, I still don’t know where we belong. I feel lost, alone, confused, and overwhelmed 99% of the time. I just wish I had someone to say to me, “this stuff is hard and I can relate.” When I read articles or posts like yours, it feels a little like someone is saying that to me…even if it’s over the internet.

    I’m not even sure what my point is, other than to thank you for posting this.

    God Bless,
    Allison T.

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  4. Nae schmidt says:

    Have faith. My son didn’t say mama told he was 4. I sobbed like a baby. Then he started with echolalia. He’s now almost 8 and he gets a lot of words confused, but he can hold a conversation!

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  5. Marziah says:

    Oh, I hate the whole contest of who has the most disabled kid. It’s so unhelpful. My son was functionally nonverbal for many years. He had apraxia, but he also lacked the ability to functionally use the words he could produce. So he could say the entire alphabet, but he didn’t say “Mama” or “Yes” or “No.” That’s still nonverbal. The word is only part of our vocabulary because it is how he was described by specialists, just like with your daughter.

    The disability world isn’t absolutes. Most members of the Deaf community still have some ability to hear, for example. I wonder if their parents scold each other in online forums about not being “truly” deaf if their kids can dance along to the bass when the music’s really loud.

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  6. I love that phrase…’special needs wallflower.’ My son is 4.5 and nonverbal. He has no actual words and only makes vowel sounds. I have felt the sucker punch you speak of. I so get it mama. Hugs.

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