New techno-toy!!

Out of sheer necessity of real property appraising in 2009, I'm pretty computer-savvy. My computer technician moans and groans that, when I call, it is always something major, because if it is anything less-than-major, I'm fully capable of fixing it myself. I only scream "Mercy!" and call him when I've exhausted every other resource.

Computers and other techn0-toys used to sort of go together, didn't they? Remember those days? If you were good on a computer, you were just pretty decent with technology as a whole. If you haven't wandered through a large electronics store lately, let me inform you that those days are over! There are a gazillion gadgets and doo-dads out there that I have no idea how to operate, and don't have any intention of learning before they are obsolete.

With my dear teenage sons around, I was beginning to feel a little out of date, but their techno-needs are pretty simple. I mean......let's face it......they get their thrills by smashing other boys on the football field and wrestling mats. They love their MP3 players and the convenience of their cell phones, but don't spend a lot of time exploring their full range of uses. But with the employment of my appraisal assistant last May, I have quickly come to the conclusion that I am becoming a dinosaur. Unbelievable to me, Amber can text with her hand and cell phone in her pocket! Accurately! She laughs hysterically when she watches me send one of my rare hunt-and-peck texts. Great......I'm humor fodder.

Until today! My cell phone plan was up for renewal, and I acquired a new phone complete with a QWERTY keypad. It has both the numeric keypad and the QWERTY, with the QWERTY revealed only when you slide the thing open. Magic!!! And, oh-so-modern! Groovy!

So.......when Amber comes to work tomorrow, I'm going to wave my new toy under her nose. No doubt she will still be able to out-text me with her numeric keypad hidden in her pocket.......but at least I look modern. And, no, I did not get a Smartphone with internet. Quite frankly, I just don't want to be that "available" to my email and I have no desire to use Facebook (or any other website) while I'm wandering the random world. Not to mention that cell reception is still a bit "spotty" out here in the rural outlands. As for Twitter.......there isn't anybody out there that needs to know (or care) what I'm doing right now. Period.

But still........I'm rather enjoying my new toy. I've already tried out the texting with the keyboard and I'm way faster than I was punching on a numeric keypad. I loaded an animated wallpaper on the home-page, typed my name in the banner, and customized my ringtones. What....that gets me up to speed with........2003? :)

That's IT??!!!???

Jennica has been a real beast lately out at the riding stable. B-E-A-S-T! For the most part, she has been insisting on sitting in the car, which always progresses into laying on the horn because she gets very impatient. When I do manage to talk her into coming into the barn and/or arena with us, she pouts/screams/whines/yells and makes a general boob of herself. Needless to say, I'm at a point where I don't even want her out at the stable right now. Thankfully, the horses are more tolerant of her behavior than most humans, but even Yodi is rolling his eyes at the sight of her. Its exhausting for all of us to try to get feeding and chores done with her shrieking or honking the horn.

In any case, it doesn't take a genius to figure out that something is going on. SOMETHING is bugging her, but in a horse barn with 14 large, smelly animals......it could be anything. I honestly figured it was the colder temperatures. She is really reacting more than ever before to temperature at the moment, so I figured she was struggling with the cold. Of course, a pair of ski pants and thermal boots and various hats and gloves later....she's still being a boob.

And then today she attached herself to my leg and wouldn't let go. I lunged a rowdy 1200-pound horse while she was clinging to my thigh like a leech. (Not safe with all horses, but this one responds entirely to voice cues.) In any case, during the process of clinging to me, Jennica finally managed to tell me that the sound of the rain on the metal roof of the barns and arena were making her "crazy". And my lightbulb clicked on! Bing! Auditory processing........repetitive background noise.........thats IT!!!

Once I was able to talk to her about what was CAUSING the noise, she settled down better than she has in about two weeks. And lo and behold.......its been raining for two weeks straight. I will keep talking to her about the noise that rain makes on the roof and we'll see where it goes. We might try some muffling headphones or something. Maybe even some earmuffs would make it more tolerable. I'm not sure yet, but at least I think we might have an answer for the shrieking.

But seriously? Rain on the roof? That's IT??!!!??? This SPD stuff is exhausting some days!!

How come nobody slapped us harder?

I've done some pondering this week. I know......scary stuff......me thinking. I've been thinking back to the very beginning of our journey to SPD, and wondering if we missed "the signs". Primarily, signs that we should have seen. If so, what were they? And why did we ignore them?

I still remember our first trip to Mary Bridge early in 2005. Jennica wasn't yet a year old, and we were there seeking guidance for a number of minor issues. Very minor issues that, without her genetic history to point to as a basis for taking a closer look, they would have laughed us right out the door. For most intents and purposes, she was developing right on target. There were issues like not consistently turning toward sound, but it was never consistent (you had to catch her in the wrong mood) and her hearing tested fine. There were sometimes issues with visual tracking (again...you had to catch the mood), and a lack of interest in solid food, but once again, she was so young and she was clearly interacting and developing two-way communication skills. She was very interested in people and activities around her, so it wasn't the big "A" word........autism.

But that day, an occupational therapist introduced us to a totally new term--Sensory Processing Disorder. She retrieved a pamphlet from her office, and brought it to us in the exam room. We read it, and found it fascinating......but we were still so far from diagnosis. It would be another 3 years before we knew, but I would be willing to bet that the OT, a complete stranger, chose to give us that pamphlet because she was seeing things in Jennica, at 8 months, that were already showing the path to SPD. She had been brought into the exam to have a fleeting conversation with us about inspiring interest in solid food, but I bet.........she knew, or at least had a strong guess.

Children with SPD are, in some ways, their own worst enemy. They are so darn normal in the ways that you are told to be aware of. Even parents, like us, that were fully prepared to face some developmental "blips" along the way, due to sheer genetic history, missed things that I wish we had caught earlier. For example, her speech has always been excellent. Her eye contact is excellent. She communicates and interacts. So.......who knew that what appeared to be stubborn, strong-willed, and downright bratty at times was more than......stubborn, strong-willed, and bratty. We didn't know that persistent complaints of hunger might be more than a hungry kid. We didn't know that difficulty going to sleep might be more than difficulty going to sleep. And on and on it went. Every parent we know has a horror story that relates to Jen's symptoms! If she had presented with these symptoms and other symptoms related to physical health, communication, interaction, etc., we would have been many steps farther ahead before age four. But we were watching.......and we missed the symptoms we had because they could be so easily explained as stubborn, strong-willed, and bratty.

So now......a question. There are certainly a lot of children out there who lack good discipline. We all know that. But for parents like us, that tried to provide consistent discipline and didn't get anywhere, and then learned there was a reason for the behaviors........how do you know? If we, as a group of parents promoting SPD, are going to move forward in this science, how do we help other parents see the difference when we ourselves couldn't see the difference in the moment? We don't need a bunch of discipline-deprived children running around with diagnoses of SPD, ADHD, ODD, or any other neuro-developmental disorder. Nor do children with SPD need their diagnosis "weakened" by the mis-diagnosis of a bunch of kids that just need some solid boundaries. But with all of that said, if we don't identify these children early on and get them appropriate treatment, it is already a proven fact that they often become future criminals, drug addicts, and more.

I don't have the answers. But I'm facing the questions honestly and asking them.

My favorite veteran

I was fortunate enough to grow up knowing, and occasionally flying with, a WWII fighter pilot of the Army Air Corps. He never quite put the war behind him and, even now, at almost 90 years of age, his conversations are often dominated by old war stories of Saipan and the air battles over the South Pacific. I've asked questions at times, and have been allowed to peruse his old flight logs and photos, but for the most part I prefer to just listen and absorb his passion. That's what I will remember when he's gone.

I will make a phone call tomorrow and tell him, again, thank you for his service. He's my very own war hero.

Neuro-comedians??

So.........today was "Back to Mary Bridge" day. Oh goody. (I remember a time not-so-long-ago when the place sort of fascinated me. Now that I finally have the parking down, and have a clue where to go, its lost its luster. Go figure.)

Today was the day that we got to meet with Dr. Sleep-and-Seizure. I won't bore you with the long version.......Jennica qualified for study. But she qualified for MORE than what I had hoped for. There is both good and bad in this scenario. The good? We should get some really true answers one way or the other, which will bring solutions either way. Either treatment, or a "clear-sailing" on this part of the brain function. The bad? These are some really brutal test procedures. I had convinced myself that, if she qualified, this would be a one-night show. I have friends that have endured sleep studies and know the basics from them. Or so I thought. Heh.

Test #1 will consist of us keeping Jennica up until midnight the night before her testing, and waking her up again at 4 a.m. The goal (or so the doctor says) is to make her sleep-deprived and, therefore, stress her neuro-system. We are then to accompany her, still awake, to Mary Bridge, where they will perform roughly two hours of electric readings on various areas of her brain, while she completes certain activities and tasks. The activities are all pretty basic, but designed to stimulate different areas of the brain, so that they can view the electrical activities. Just my opinion.........but I have seen my daughter sleep-deprived. It ain't pretty. The level of participation that they are going to get is probably going to involve whining, screaming at them, and lying on the floor. As her visual and auditory processing systems are the first to begin to struggle in sleep-need mode, she will quickly switch to her tactile processing system for input on her environment. Which means that she will CRAVE touch for everything. From the floor, the ceiling, from us, and she's going to be extremely sensitive to hunger, thirst, cold, heat, etc. And the mood swings? Watch out! Of course, in all honesty, these are neurologists that test similar children all day long in similar situations. I'm sure they've seen it before. But those kids are not MY kid. UGH! Can we just drop her off at the door and pick her up when its over? No.......I wouldn't really do that to her, but its hard to think positively about this.

Test #2 will involve the basic wire-you-up-and-tell-you-to-sleep thing. We check in during the evening, and check out in the morning. This was the test that I knew about and thought it was probably going to be difficult, but I could "buck up" and get through it. Now........it sounds like a cake-walk compared to Test #1. Plus.......they've said we can use our regular bedtime routine, including melatonin, which will really help here!! I'm a little concerned that she's going to detach the wires as fast as they attach them, but once again, these people are experts. They must have that down to a science. Right?

Test #3 is performed during the day immediately following Test #2. They are going to try to get her to nap all day, at two-hour intervals. She has 20 minutes to fall asleep. If she's not asleep, they quit and she "plays" for another two hours. If she falls asleep, they let her sleep. Okay............we can do this. It will go better if she's slept fairly well during Test #2, but either way, this one is survive-able.

After meeting with the neurologist today, I honestly have no expectations for our outcomes on any of these tests. I think its hysterical that they sit there and explain all this to you like its as simple as boiling a hot dog, but whatever. I generally have some pre-conceived notions going into testing, and I knew that her symptoms were very likely going to be enough to qualify her for study, but I guess I didn't expect them to take us quite THIS seriously. I have no idea whether we're going to come away with the common sleep or seizure disorders that accompany SPD, or if we're going to walk away with simply another box checked off, and another option that has been explored.

A long, cool, drink of water...

It has been a brutally long few weeks around here. The list of things that have gone.....er.........not our way......is lengthy. First and foremost, we've been sick. Every darn stinkin' one of us. And then my computer crashed. (It had a virus, too. Go figure.) And then we all got sick AGAIN.

This is going to sound rather naive, but I don't really GET sick. A day......maybe. But day after day after day? Very rarely. I've always been pretty darn healthy, as is everyone else in our house. I get tired.......I get very bone-tired.........but I don't get sick.

The last few weeks, I have felt the weight of the world pressing down on me. Exhaustion......sickness.........more exhaustion........I had nothing left to give and the world was looking pretty darn bleak. Of course, with Jennica's needs that are absorbing such huge amounts of my energy, and now with little energy to give, I started to wonder, "WHY??" Why are we doing this? Why are we doing that? How do I know that my time and money wouldn't be better spent here or there? How do I continue to put one foot in front of the other not knowing if we're gaining any ground? I'm so so so so tired. And then the age-old question--Is the child improving at all, or are we just catering her environment around her to create the illusion of improvement?

And then, I was given today. I say "given" because I am truly viewing it as a GIFT. A reason to keep going. An inspiration. A high point in a long and winding road that stretches far into the distance.

Today, Jennica had her normal, weekly therapy appointment. Her therapist has moved into a brand-new building built specifically for them, which is hugely exciting for all of us, but can also spell big trouble for little bodies that don't transition well to new places/routines. Honestly, I expected a meltdown at the door, as......well.....everything that can be difficult has been lately. In any case, Jennica marched into the new "digs" with a smile. She spent the next hour verbalizing everything she did. She laughed aloud as she careened wildly on the new swings. And........drum roll here..........she initiated a visual diagonal during a fine motor task!!! She not only copied it. She initiated it! (Trust me here........this is HUGE!) And then she laughed and played more! No meltdowns. No fights. No bargaining. No whining. Only active participation, reciprocal conversation, shared decision-making over activities, and genuine signs of self-comfort in a strange environment without constant reinforcement that she was "safe".

I've cried tears today over the relief of the hour that I witnessed. It was an hour that a parent of a "typical" child never thinks to treasure. Until you have one that struggles to feel at home in their own skin. Who knew that an hour of "normal" could be so utterly earth-shattering that a tired Mom could be driven to tears? And encouraged to keep going.