When the doctor delivered Rya’s diagnosis back in 2009 I was distraught and confused and emotionally deflated. Through out those early years of not knowing if she would ever walk, I got through it by telling myself that the physical challenges are going to be easy. I always thought, “Wheelchairs would be fine, I just want her to be intellectually ok.” Time and again in my blog and conversations with doctors, friends, family and even strangers, I would say roughly that same sentence over and over.
Of course, when talking to neurologists they always said the odds are in her favor of living a normal life. And that phrase is so comforting yet SO loaded. I’d like to think I’m not dumb, in fact, most folks would say I’m pretty sharp. But now when I look back at every doctor’s visit where I was fed that phrase, I was relieved. But what *is* normal? What does that even mean?
Well, for a neurologist I can sort of answer that….now. It means, “Hey she might walk, she might not. She might talk, she might not. She might be intellectually normal and she might not.”
3 weeks ago we took Rya to see a psychologist to address some behavioral problems. We brought all of her IEP assessments, tests and most of her medical records.
We sit down with the doctor thinking we’re going to talk about coping skills, parenting techniques and her general behavior. And we do. But during every lull in conversation the doctor looks down at the paperwork and and remarks about her IQ and cognitive assessments. Me being me, I just try to stay focused on what I think is the issue…but eventually he matter-of-factly says, “With her IQ scores and cognitive tests, she’s never going to intellectually advance beyond 9-10 years of age.”
The air left the room. I had been sucker punched. I was oblivious to that possibility. I had worried about it for so long but hadn’t ever considered that possibility. I had always thought that the worse case scenario would be that she’d be mentally slow.
I couldn’t process his statement. I had this montage running in my head of every time a doctor told me “she will probably have a normal life…” I couldn’t process anything for about a full day afterwards either. It really wasn’t until 2-3 days later that I was able to think about it objectively.
In an effort to get healthier and just to get outside more, we’ve been doing some hikes and walks. Nothing fancy, just walks along the river and other fun places.
As you can see, the kids love it!
We also got the little ones some more Sunday clothes. Kids are now super stylin’!
We recently stopped using the day brace on Rya’s hand opting for some KT tape instead. And after about a month the results are ASTOUNDING! Her brace had some limitations: first it did nothing to extend her arm at the elbow, it also didn’t extend the thumb upwards/outwards (it just sort of created some space between her thumb and her index finger).
So I used several different tape methods to solve the above problems. Now her arm extends with no pain at the elbow, all her problem joints are experiencing less tone and she’s using her “magic arm” way more!! Plus she’s sooo proud of how easily her arm stretches that she shows everyone, such a cutie!!
And we graduated kindergarten!!!!!!
I love having Utah’s backcountry as my backyard, it takes me longer to suit up for flyfishing than it does to drive to the river. Rya goes skiing with the National Ability Center every Wednesday. Hiking in the most beautiful canyons is minutes away. And I still get 20mbs up and 20mbs down for internet, how awesome is that?!
Rya has all her braces and splints finally. Two wrist braces, one for day use and one for night-time usage. She also got a new leg brace, an AFO (ankle-foot orthotic).
She also got new glasses, she absolutely loves them. But I spent the better part of an hour fixing them, not even a week old.
Sy is still superhero-crazy, we’re super excited for May to come so we can go see Avengers: Age of Ultron! Here he is asleep, likely dreaming of smashing things like Hulk.
Rya loves puzzles, she will spend hours putting together puzzles and proudly showing everyone when she completes one. And she’s been working on one special puzzle for years, herself. She sees other kids; kids that aren’t hindered by cerebral palsy and she’s working hard to make her body work like those children. She understands there are intangibles that other kids have that she’s not quite on par with and she assembles her puzzle pieces to try and emulate them.
This leads me up to Rya’s appointment with a new physical therapist at Shriner’s Childrens Hospital. It went really well, her therapist is very well-informed and is great at her job. I had done a lot of research into different braces and splints for her wrist and was pretty excited to see what they had to offer.
When we arrived, Rya really wanted no part of the visit and of course didn’t want anyone working on her Magic Hand. Once she figured out that we were there to solve her special puzzle, she warmed up it. While she had no idea precisely what we were saying, she knew we were moving pieces around and trying to make them fit for her.
But in the end, it was a great visit and she didn’t want to leave when it was over.
Not long after Rya began going to school full-time, she began having explosive fits of rage. She would explode upon getting home from school and right at bed time…. it was like clock work. It didn’t matter if she got her way or not, it was as if she had decided to throw the grand-daddy of fits.
After a couple of weeks of little to no sleep, we decided to make an appointment with the school behavioral therapist. We had run out of moxy to keep up with her rage. I’m not gonna lie, I felt like a failure even considering such a meeting. And to be frank, I had built up quite a bit of predisposed resistance to anything they could offer.
But there were no options left to us. So I begrudgingly headed out to meet with the behavioral therapist and her special education teacher. (Now it;s time to briefly recognize how completely amazing her special education teacher is…. she is incredible)
Her spec ed teacher explains that this type of behavior is pretty common. Kids spend enormous amounts of energy ‘keeping it together’ at school, tons of energy. By the time they get home they simply don’t have the ability to keep their wits about them, their coping skills break down and they throw fits. Even for kids that aren’t in special education have this problem.
Now the big question was, how to deal with it. Because these aren’t normal fits at all, they are blind raging fits of phenomenal proportions. She loses the ability to form words and just screams gibberish at us during these fits.
So I was a little skeptical about their diagnoses. OK, I was *very* skeptical. But as we talked, it really seemed like this might be the problem.
But it went a tad bit deeper. To use a phrase coined by the TV show Modern Family, I am the Carnival Dad…. all fun and no down-side. So I tended to cave to Rya’s demands pretty soon and very frequently. The more we spoke, the more I felt like the Bad Guy.
But we ended up getting some solid advice and some nice logs to use. Turns out the idea of positive feedback works!
We have a jar for each child and randomly we reward them for good behavior by giving them a small fuzzy ball to put in their jars. When they get ten fuzzy balls they draw from a pre-designed set of rewards. We also set goals and rewards for the goals- eg. 3 days with now fits and Rya gets a prize of her choice or 5 nights of Sy going to be without playing in bed and he gets to choose a prize.
The flip side, the one I’m still struggling to nail down are the logs. Logging and rating each fit… the cause, result, severity and result of every fit. The point is to have data to track and figure out what her triggers are. I have to get better at this.
But, the positive feedback is working pretty well. After about a week, we had our first real fit (at bedtime, of course).
I’ll try to keep this updated more often, even if it’s just to keep myself honest about this Rage Logging.
Both Sy and Rya have had this on-and-off cold/flu for the past month or so. Sy’s is worse, he tends to get a ragged cough. But they both have full-on snot factories operating at peak capacity lately, yuck! Of course, the day we take them to the doctor is the day they exhibit no symptoms other than a runny nose!!
Rya is still having some behavior problems, she has good days and some bad days. At her worst, she will fly into a rage screaming “gaga gag!” in a demon-like voice. No clue what’s going on there, but she hasn’t done it at school or daycare… so maybe it’s just me that triggers it. I don’t know, nearing my wit’s end though.
As a result of her anger issue, I’m arranging to speak with her school counselor, no idea if it will help. But it can’t hurt!
Anyway, here are some fun pics!!
The kids and I moved to a slightly more rural town, the air is much cleaner and the people are far more welcoming. I was afraid moving and all the change involved would really upset the kids, but it’s been a great experience.
Rya is in a different school district and going to school all day. She loves it. Her Special Education teacher is awesome, very informed and incredibly active with Rya. Her favorite thing about school is eating lunch with the other kids in the cafeteria. Which is weird because sitting down and eating are two things she’s terrible with at home.
Sy has friends from church and took the move in stride. He does homework with Rya and I can still see the cognitive difference between the two: he’s rational, responsive and grasps abstract concepts easily. Rya is easily frustrated when it comes to learning, tends to ignore me when I correct her and still hasn’t really started to become interested anything remotely abstract.
Zoe is in town for Fall Break this week, so we’re all focusing on family and having fun. It’s not often we all get to have fun together.
On a personal note, my mother passed away last month. A life-time of smoking caught up with her, she died in her sleep. She always said that’s the only way she wanted to die and I guess I can’t disagree with the idea. Her death put a lot of things into perspective for me. How easy it is to forget how important family is in our lives. How easy it is to put off writing letters or making phone calls. And how much chaos and confusion you leave behind.