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The conundrum that is my daughter

11 Dec

Maura has always been an interesting child, not just because she comes from interesting people. No, she’s earned her right to be interesting on her own.

If you’re new to our story, Maura doesn’t have a diagnosis. I jokingly call it Sherlock Syndrome, because it’s a mystery, and our last name is Holmes. People are always curious about what makes her tick, which is understandable as she is a curious creature. Even among snowflakes, she’s a bit unique.

I noticed this when we were first doing all the evaluations and meeting all the therapists, and they were floored by the fact that she never had feeding issues. It seems that feeding issues are common in children with all sorts of special needs, and especially in kids with low muscle tone who have extremely high palates like Maura’s. When it comes to high palates, Maura’s was exceptional. And yet, there she was at sixteen months, popping Cheerios in her mouth with the best of them…which actually, wasn’t a great thing as she was supposed to be putting the Cheerios in a small container for one part of an evaluation.

“She doesn’t have feeding issues?” they’d ask. “Ever?”

No…why…is that weird?

Maura was a toddler who wouldn’t toddle, not on her own. She didn’t walk until she was 23 months old. She had the ability to walk before that, but not the good balance, so she basically refused to walk unassisted until she knew she could control her balance on her own. But she could climb onto the couch and up the back to it to bang on the window screen, and crawl up the stairs – skills that usually occur after walking.

I learned the term “scattered skills” – where you have skills at various levels, instead of learning them at the normal progression. Maura was quite scattered at her skills. But as we didn’t have a diagnosis, we didn’t have a road map to what the norm for a child like her was, we just accepted the path Maura took and tried to keep up.

Not much has changed. Maura is still paving her own way, and we’re still trying to keep up with her. Her skills are still all over the map. She can’t write, but she can work her way through touch screens and the Xbox controller like a champ. She was fine with having a character backpack in elementary school, but quickly ditched those for a plain aqua blue Jansport backpack after a couple weeks of middle school. She knows what she wants to wear.

In many ways, Maura is savvy and independent. It was after posting about her wanting a more “grown-up” backpack, that a friend sent me this –

Please excuse my expression here. It appears that Maura has all of her “marbles”, but that cognitive pickup due to the eyes, ears, etc might be the weak point? I am thinking of people who are “trapped” in their bodies when they age. Whereas Maura did not know anything else. Is this right? Wrong? For when I read your columns Maura has sophistication to her that would surprise most, no?

And I told him, he was completely right in many ways. Maura doesn’t know anything else except the way she is, and she does have a sophistication that surprises those who have read her charts before meeting her. I remember when we went to our first neurology appointment in Ireland. Maura was playing in the waiting room on her iPad. The doctor came in, called her name while looking around, and got a little bit of a surprised look when she walked up to him, registered his white coat, and said “Hi Doctor!” while sticking out a hand. When we got to his office, he sat down and said with a smile “I’ll admit, I was a little surprised to see how capable she is, after reading her paperwork.”

Yeah, we get that. Maura presents a bit more…dire of a case on paper, what with her lower IQ score, her verbal apraxia, her motor skill issues. But in person, she is quite capable, and always has been. Usually I’m surprised that people are surprised at what she can do. I remember one evaluation when Maura was about four, the speech therapist asked how Maura asked for a cookie. I was a bit confused by that. The speech therapist clarified – “If she saw a plate of cookies on the counter, how would she ask you for one.”

“Oh, she wouldn’t ask.” I responded. “She’d just drag the little pink chair over to the counter, step up on it, and get it herself.”

AKA – Maura learned a lot via observation of the siblings. Too much sometimes. And because we had no diagnosis for her with a Plan of Action, we basically let her try everything and allowed a level of “normal” development that therapists actually loved to hear about. On the flipside, because Maura was a bit on the self-sufficient side, we had to create opportunities for her to use her voice. We still do actually.

Not that it stops her from doing what she wants at times. Like last week, everyone else was making toast. Five minutes later, I hear the toaster pop up, hear “Ooo…hot…” and realized Maura was the one making toast. I ran into the kitchen, where she had one piece of toast out, but not the second, showed her how to lift the toast out, how to butter, and thought it was all safe because she had toast. Until a little while later, when she walked into the room, with a plate of new toast, this time, buttered. “Toast!” she announced proudly.

Josh looked at me. “Did you know she was making toast?”

“Nope.”

These are the things that we deal with. She has the ability to work the toaster, but not the ability to connect the zipper on her coat (though she’s working hard on that). She understands that her tablet needs to be plugged in, but doesn’t understand that it needs to be plugged in for longer than 1 minute. It took her to age ten to become potty trained – but once it clicked, she was awesome, and day and night trained. Yet I still have to tell her to rub the soap around on her hands when washing hands and not just rinse the soap immediately off. She can sing along to songs from all her shows, and remember all the songs, but when she speaks, you only get a handful of words. She watches both “My Little Pony” and “Doctor Who” – she loves Doctor Who, and understands that every so often, the Doctor changes – she’s actually more accepting of new regeneration than many adults I know! Yet she doesn’t have a clear concept of time, or even yes and no answers.

In many ways, Maura is a student of life. She learns from observation, and because of that, it’s been so important to me to make sure she’s in the proper learning environment for her. When her teacher this year mentioned that Maura was throwing small fits over wanting to carry her backpack to gym and lunch even though it wasn’t needed, I asked “Do all the other students at the school cart backpacks?” The teacher said yes. “Well, Maura’s just trying to do what the other students are doing.” The teacher was all “Oh! That makes sense!” and then relayed to me later that Maura was allowed to bring her backpack to lunch and there were no more fits.  She watched what the other kids were doing, and wanted to blend in that way. Just like she sees her siblings making toast, she decides she wants toast, and so makes her own dang toast.

She’s a conundrum, my girl. Always has been, probably always will. She doesn’t understand that she’s disabled, she will probably never understand that concept. Luckily, we’re used to her independent streak, even if it strikes fear in our hearts sometimes. I full expect one day to walk out and find her trying to start the car because she thinks she can drive. I’m hoping at that point, she doesn’t have the dexterity to get the key into the ignition.

This girl of mine has always been on her own path. We just try to keep up sometimes.

 

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6 Responses to “The conundrum that is my daughter”

  1. franhunne4u December 11, 2015 at 1:35 pm #

    Under all circumstances make sure you hide that car key from her. Can she open a glass with a screwed on lid? Can she open a bicycle-lock? There must be things she canot work – use those. Not only for her own safety and your car’s … there are people on the street …

    • phoebz4 December 11, 2015 at 1:39 pm #

      Screw lids yes. Bicycle lock, no. Zippers no. So we’re still safe. Doesn’t mean I don’t lock up meds and hide liquor, lol!

      • franhunne4u December 11, 2015 at 2:07 pm #

        Find a small chest in which you can keep your keys then, and close it with a bicycle lock.

  2. Dale Diddock December 11, 2015 at 8:19 pm #

    Maybe you should encourage her to co-author a self- help book with you. She could impart some of her spirit and wisdom on the rest of us,-and make you both rich in the process. Then she could have a car, and a driver.

    • phoebz4 December 11, 2015 at 8:36 pm #

      Well…she can’t write. Or type yet. Or read. Or speak in more than 4-5 word sentences. But she makes up for all that in spirit and inspiration and tween attitude 😀

  3. What's On Lauri's Mind December 12, 2015 at 8:00 am #

    I love reading about Maura! My son, Wendell, doesn’t quite have the independence that Maura does, but he tries so very hard. It’s is nice for me to learn of others having the same experiences we do.

    At 15, we just got a diagnosis this year. I don’t think it would have helped us earlier in his life, but it gives us that “Ah ha!” moment of explaining so much. I think it unlikely we would have found the diagnosis without Whole Exome Gene Testing. If you’ve never heard of it, it looks for mutations in the genes, and then matches those variations to known or unknown syndromes and diseases. Knowing hasn’t changed much in our lives, other than we now can plan adequately for his future (and ours)!

    I look forward to the next installment!

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