Friday, March 21, 2014

Our lives are sensational!

No, really. Sensational. And have been for the last 2 1/2 years.

I knew something was up. My mommy senses were tingling. We spent so much time NOT doing things. We tried so many things that just didn't "fit" our daughter.

Our first Epic failure was reading time at the Library. She was a good book reader at home so why not at the Library? A little book, a little craft, a few friends. This seemed right up her alley! Nope. After ripping apart the felt board to lick all the pieces, standing directly in front of the book the entire time so she could see, and throwing the craft across the room because the black marker was out of ink (as most kid accessible markers are) we left. In tears. I was waiting for CPS to come to my door those following days.

I've pulled my daughter out of gymnastics, kindersports, mommy and me gym and swim classes. We had a season where playgrounds were off limits because she just couldn't keep her hands to herself.

She's been kicked out of nurseryS. After I got our second "she's a bit aggressive for the room" from our second MOPS group at our second church I vowed never to go back to MOPS again. (I'm now on steering of my own church's MOPS group so that tells you how that worked out.)

So nothing fit. But why? She's smart, funny, kind and considerate little girl. Until she's not.

Not only did nothing fit activity-wise but nothing fit clothes-wise either. Tags were too much. The seams of the socks had to be just right. Beautiful dresses sent from out of town relatives were too itchy and scratchy. We lived in knit fabrics. Long tunic tops and stretchy pants.... jeans only if they had elastic waist.

Developmentally she was hitting every milestone on time and even several of them ahead of time. She loved being read to, she could strike up a conversation with anyone about anything, her basic math skills were growing as expected and she could spit facts about octopi and volcanoes and sharks and trains right back to you at 100 miles per hour.

We chalked it up to "She's just so smart. An only child. We treat her like an adult, she acts like an adult so why should we expect her to be a kid around kids?!" I mean, we disciplined her more than anyone else we knew disciplined their child. (For goodness sakes at her 3rd birthday party she spent most of the party in time out!) We read "Shepherding a Child's Heart", "Bringing up Girls" AND "Bringing up Boys" and spent time in several parenting seminars including the Nurtured Heart approach. We did everything we could to "beat it out of her" (CPS- that's a joke. Ha-ha..... get it? Pleasedon'ttakemychildaway!) and "hug it out of her".

But honestly, we had other medical issues to worry about. She had a kidney that was non-functional, ureters that were not placed where they needed to be and her bladder needed to be re-constructed. That was the year she was 4. The whole year it seems.

Until the beginning of fall. When it was apparent she wasn't going to grow out of toe walking. So we called her pediatrician who referred us to a pediatric orthopedic surgeon who referred us to physical therapy (to stretch her calf muscles because they were too tight).

Within 5 minutes her PT was telling me things about my child that I had never shared with her or anyone else. Random little silly things. Things that she would only know if there was a diagnosis for my child and other children like her. Sensory Processing Disorder*.



So she's not a bad kid, not disobedient, not "not listening", not aggressive, not mean, not a jerk, not stupid, not rough, not a picky eater, not destructive, not clumsy, not forgetful, not a drama queen. She has SPD. Her brain can't process the input that her body is receiving. Which is frustrating and painful for her.... and us.

The good news is that I was right. The bad news is that I was right.

This means our life is different. We won't be able to attend every birthday party let alone let her have one of her own right now. We can't do gymnastics right now. Or dance. Or Awana.... right now. Playdates are... progressing, but definitely not our strong suit. But we do it, and are thankful for those friends that allow our stuff into their homes and have learned to walk away from those that can't accept our life where it is now.

She's happy. We have fun as a family, being close and doing fun things. We're thankful that her SPD allows her full night sleeps, to go out in public with us, and to eat balanced meals. She has a grandmother who adores her and pretty much thinks she's perfect. Our daughter gets to spend one night a weekend at her house and I get to have a drink a break. We are blessed, please don't think I don't see that.

Right now I ask for grace. Not just for us, for any child that looks completely normal from the outside but inside has their own bundle to deal with. Give their Mommies and Daddies eye contact and a smile. Reach out to them. Let them know it's OK. Because the meltdown you see out in the world may be the tail end of the biggest success of the week.

For the too big child in the grocery cart. Because the cart may be the only safe space in the expanse and  noise and business of Wegman's

For the child that hugged yours a little too hard. Because they LIKE being hugged that hard so why wouldn't yours?

For the child complaining of sore feet when they've sat on their bum all day long. Because pain for them registers differently than pain for you.

For the child not listening to the teacher. Because they can smell the ammonia cleaner in the air, the sound of the other kids talking, the flicker of fluorescent lights, the noise from the hall as parents drop their kids off, the scrape of the tag on the back of their neck, someone's thick flowery perfume, the cars driving by the window sending a strobe-like glare across the room, the clock ticking and then the teacher being too loud  and too close in her personal space.

For the child that just can't.




*Right now we're in the process of getting her evaluated. This is a looooong process and quite a waiting list. Once it's done and diagnosed a whole world of services and groups and opportunities will open up.We'll get there, I know. In the meantime we have PT services as long as we want them. And boy, I want them.

No comments:

Post a Comment