Tag Archives: special needs
This afternoon we experienced a freak episode that was outside of normal. For us. But I could not shake the thought of how normal it actually felt.
RM came home off the van from school and we proceeded through the ritual of taking off our shoes, hanging up our coats, washing hands, putting on a new pull-up and getting a fresh cup of water and some crackers. It’s exactly the same routine every afternoon. But then we did something way out of the ordinary. We bundled up and put our sneakers back on and set out on this beautiful day and walked the quarter-mile up to The Boy’s elementary school to greet him and even hang at the playground for a spell.
You know like normal families do.
There were other moms there, too, congregating like moms do at the playground while kids play. None of the moms was 1:1 chasing their autistic kid. But here’s the thing – neither was I.
RM has come so far in the last year. She can maneuver the playground like a pro. Sure she has some limitations like any other 5-year-old. But they are height-specific like not reaching the zipline bar, they are no longer limitations of disability. She giggled. She watched her peers play. She smiled at them more than a few times. She gave chase to her brother. She was having a grand time.
So was I.
It was so – what is the word? Normal.
It wasn’t a perfect outing, we had a few hiccups like when RM saw her brother walking toward us (and home) so she panicked. She did flop on the ground, but she just needed the reassurance that the plan was still set and we really were going to the playground. She regrouped rather quickly and even said, “Sorry, Mom,” as the three of us took hands and kept on our way up to the schoolyard.
The other moms I chatted it up with I know well enough to know they each have had their own brand of normal. Not autism-normal, but they have had their own unique journeys with their own kids. And I appreciate that more than they will ever know. Because autism-friendly is as much about normal being different for all of us than it is about being the same.
But I sure loved the brand of normal we had this afternoon.
Good morning, Friends.
Today I am honored to be a guest over at The SPD Blogger Network (SPDBN)!
Come see me –>HERE<–.
“This group blog is designed for those writing – or those who want to write – about raising a child with Sensory Processing Disorder. This is a place to share stories. All of our stories.
Potty training nightmares, sleeping challenges, Occupational Therapy success, picky picky eating (or none at all), social skills challenges, meltdowns at the grocery store, and the every day chaos (and joy) that is raising a child with SPD. Here is a place for you to write it all down.”
It’s an amazing gathering place for all things sensory. Come visit me over at the SPD Blogger Network today! I am honored to have pulled up a keyboard and joined an amazing group of people riding the same train. Did you know that both RM & The Boy experience Sensory Processing Disorder? Grab your ticket and hop on the train for a few and see what we’re all about! Join us at SPDBN!
Ironically, on the way home this afternoon from Boston Children’s Hospital, I spotted a license plate on a blue Beamer screaming by – “DETA1LS”.
It truly is in the details, isn’t it?
When I look at my beautiful baby girl, now five-years-old and full of life and possibilities, I see all the details. Every time I look at her. There is never such a thing as a glimpse of this child.
I see every new freckle that has taken up residence on the apples of her cheeks. I see the speckles of gold and brown in her radiantly green eyes. I see how every wisp of her thick brown hair falls across her brow.
I see every moment of pain, every scar on her chest and belly. I see every instance in which that belly rumbled in hunger and jiggled in laughter.
I see the pride in her smile for every word she managed to form and was understood. I see every wrinkle of her nose for every frustration when she was not heard.
I see ears that beckon me to nibble on them because of the way they stick out and pop right into my mouth when I hold her close. I see little rosebud lips that worked for years to coordinate something so simple as blowing out a candle. I see her little overlapping piggie toes that she sticks in my nose after a tubby so that I can tickle them and pretend to gobble them up.
And I see her one perfectly unique pinkie finger with a perfect hooked little nail that tells the world she is one of a kind. And she is mine.
Today we took a drive up to Boston Children’s to see a Plastics guru we shall call “Doctor T” who has made a career of changing little lives with the most delicate precision of nips and stitches. I knew of him by way of my sister who lost a fight with a lawn tractor a few years ago. This was the surgeon who specializes in microsurgery and helped to save her leg. While taking my sister to a follow-up visit way back then, she stopped to show me a side room in the office. It was filled with shelves of castings of congenital hand and foot deformities that Doctor T and his partner had transformed. It was amazing. I felt an instant ease there. Like it was meant to be. We left the appointment knowing that I would someday be back to see Doctor T with my baby girl.
We’ve had our share of ‘specialists’ for RM. Most have been total blessings that not only have cared for her, but have shaped our lives as a family. They have sat with us through heavy times and listened to us and our opinions on how to best care for RM. Today was a familiar visit, and we knew right away that we were in the right place with the right person to care for RM.
We talked about how her pinkie causes her pain when its nail is easily caught on things and tears. We chatted about her adorable overlapping piggies and hammertoes. We talked about options, about the importance of certain things that could wait until a time when RM could cognitively participate in the decision-making process. There was never a moment of urgency or fear. It all felt right. There was no rush, the conversation was never hurried. The details were all there.
We decided to take the most minimally-invasive approach to start. We will let Doctor T remove a portion of nail-bed that appears to be nonfunctional and he will replace with a skin graft. So tiny, but could make all the difference. You know, details. He heard us speak of the importance of keeping as much of who she is intact.
He listened to our concerns about recovery. How would he cast her hand so that she couldn’t ruin his hard work? You know, we’re talking about autism here. It can’t be that easy. “No problem,” he said. He will cast all four fingers together so she cannot disturb the graft. See? Details.
When I asked where he thought he’d take the skin graft from he initially replied with the standard groin/hip area. But then he stopped mid-sentence and said, “Well, wait – she has scars from previous surgeries, right?” Well, duh, lots. Pick one. Aflutter with this whole process of actually talking about details it seemed my brain finally caught up to the conversation and I blurted out, “Her feeding tube site! There’s a bunch of extra skin there, it’s like a second belly button!”
With a quick nod and a peek of RM’s belly it was settled. “Oh yeah… That’s perfect right there. And I can take what I need for the finger and leave just a nice little straight line. You’ll barely see it.”
You see, her pinkie is something she was born with and to us it matters. We love it. It’s special. But that ‘second belly button’ was something done to her and we have no problem watching it disappear.
And there you have it. Those crazy little details.
RM gets a pain-free pinkie that is still uniquely her own and a chance at wearing a bikini some day.
Over the SGM’s cold, lifeless body.
But you know…. details.
[Ed note: Please don’t forget to lend your support to the Caring for Military Kids with Autism Act (CMKAA) HR 2288 –> HERE <–. And remember, you can harass your Congressperson several times a day at no cost to you ;0)]
So why was I standing in my own bathroom peeing my pants?
I was in the middle of the most exciting, giggly game of hide-and-seek with my autistic daughter and damned if I was going to interrupt it for a bathroom break.
It was our fourth round. Fourth.
She would yell, “Run! Run! Run!” and I would chase her into the living room where she would hurl herself onto the couch face first, legs flying. We would shriek and giggle and I would tickle her crazy and run off down the hallway laughing to hide myself again.
She would pause. She would wait for a moment on the couch giving me time to hide. I could hear her slowly walking down the hall, almost tip-toeing (the good kind). I picked a different room each time. Her bedroom, The Boy’s bedroom, my bedroom. And now… the bathroom.
She was systematically searching. Like it was planned. Thoughtful. She knew to be quiet about it.
So there I was hiding behind my bathroom door trying as hard as I could to keep from completely wetting my pants. There was no stopping now. My baby girl was PLAYING.
More hysterical belly-laughing, hugs and kisses and big smiles. The giggles were priceless.
Best. Hide-and-seek. Ever.
Maybe next time I will use the potty first.
Someday, perhaps as I drift through the pearly gates in the EZ-pass lane, I will get the answer to one of my most burning questions: Why the hell is it that a single task requiring a single phone call to schedule a single appointment can be the most crippling and insurmountable undertaking for some of the most brilliant, capable women on the planet? I am talking about myself here. Pardon me if my Snark font is broken.
I have a ‘to-do list’ like everyone else. It’s rather large like everyone else’s. There is nothing too ridiculously overwhelming on that list of mine, unless you count ‘reshaping the world’ a remarkable goal. I mean really, I would consider a federal bill to make autism therapies accessible for military families a rather cool objective to check off my list.
I am pretty confident that I am not alone in my quest for an answer to the above. I have met many incredible women who accomplish more in an hour than most do in a lifetime. I surely wish I was so motivated. However, there are these minor tasks on our lists that still manage to elude a great number of us – scheduling appointments.
Maybe it’s the commitment implied by the word ‘appointment’. Maybe it’s the going-to and hearing-about-that-too that we are avoiding.
Lord knows RM has seen her share. Those first two years were exhausting and we met more docs than I ever care to count again. When you are claiming hospital parking fees on your taxes, you’ve been to ‘lots of appointments’.
So I found out yesterday that RM hadn’t been to the eye doctor in three years. The sheer guilt was motivation enough for me to sit down today and go through the list of specialists she is overdue to see. Crap. Neurology. Cardiology. Gastroenterology. Plastics. Orthopedics. All overdue.
Maybe when the everyday is fought so hard for just to get through it, then the rest seems like gravy. Is it urgent that she see these docs tomorrow? Well, not really. Is it important? Certainly.
Maybe I just cannot take hearing one more time that my daughter needs something else.
I made two phone calls today. I scheduled neurology for tomorrow thanks to a last-minute cancellation and I requested an appointment with the plastics/microsurgery office about her pinkie finger.
And then I was done.
Two out of five ain’t so bad.
I don’t have much time this morning. I have a dental cleaning for myself in less than an hour. I have four-thousand other things on my to-do-list. Oh, and I am generally pissed off today.
So here goes.
RM had an ophthalmology appointment yesterday. It had been a while. Almost three years. I had no idea. I knew it had been a while but not three whole years. RM was born with a whole number of medical issues and one of them was optic nerve hypoplasia (ONH) – small optic nerves. This can cause blindness, crossing and other vision impairments. But at her last appointment three years ago *ahem* the doctor had said with confidence that after following her for two years, he felt that her nerves however on the small side did not appear to be of any large concern. “Let’s just keep on top of it by checking her yearly.” Sure, if I remember to bring her to you every year.
Anyways, things looked good. RM did a phenomenal job throughout a ninety-minute appointment including a 15-minute pause in between for dilating drops. At the end of the appointment came the shocker. RM is slightly farsighted. In other kids her age glasses would not be recommended. But considering RM spends full days in an ABA program doing sets and tasks up close, we decided glasses for school would be a gamble worth taking. Maybe she will appreciate them and wear them with ease, maybe she will have nothing to do with them. I was also warned that sometimes, children in ABA programs who begin to wear glasses for farsightedness will show a temporary improvement in progress – not due to the vision improvement – but because of the praise and focus on the glasses to entice the child to wear them. Interesting.
As I handed over my debit card to the optometrist to pay $250 for the adorable purple glasses RM had just picked out, I kept thinking about how ridiculous this ride is sometimes. And I really, really wanted off.