Sunday, December 20, 2009

9198 miles!!!

This past year, Mike and I have kept careful track of the miles we've driven for medical purposes. Our tax accountant had encouraged us this direction, and it has turned out to be a good decision for several reasons.

With one more trip still to endure to Mary Bridge Children's Hospital, our mileage total for medical only will be 9,198 miles for 2009! WOW! It's a little mind-boggling, to say the least.

Most of all, I feel humbled by that number. Jennica's SPD, while severe to us and her, is relatively minor compared to a terminal illness or so many other conditions. Our rural location makes it a necessity to travel a fair distance for Sensory-based OT, and virtually every other service, but that number could be SO much higher. And is much higher for so many families with children needing medical care.

Bottom line......Mike and I are not wealthy, but we can afford to make the needed travel to and from all these different places to ensure that our daughter is receiving the best medical care available. My self-employment allows me to schedule my work around her appointments. Is it still sometimes an inconvenience? Yes. Does it get tiresome having to constantly juggle this with that and be gone so much? Yes. Has my business profit level suffered this year because of it? Yes. But would I choose to do it any differently? Definitely not.

I guess that sometimes I feel like we need to do big things in order to help out a family during a medical crisis. This past year of the relatively minor experience of Jennica's medical needs have made me more sensitive to realizing that sometimes.......a gas card for a family might help more than we ever imagined.

Friday, December 18, 2009

Wanna wrestle this? wanna wrestle this?? ME NEITHER!!!

Grant has always been "the quiet one" of my four children. He is introspective, mathematically brilliant, kind, gentle, and has always been physically small for his age.

Well........I'm here to tell age 14, he is suddenly taller than I am (yeah.....not saying much, I know). He is also carrying a 4.0 GPA, becoming more vocal, self-confident, and is developing a wild sense of humor. And...he's buff! A true beefcake!

Grant--what a great honor it is to be your Mom. I'm proud of all you've accomplished in football and wrestling this fall, and look forward to your basketball season after the New Year. You're also a great brother, student, friend, and human being.

Love you!

Thursday, December 17, 2009

Bah Humbug in true SPD-style

If it were up to little folks afflicted with Sensory Processing Disorder, Christmas programs and concerts would be outlawed. My daughter, along with a gazillion other SPD kiddos, believes that there is not much worse than dressing up in snazzy clothes, enduring the hair-combing/tooth-brushing/face-washing/gussying, and being placed in front of a large crowd of staring human faces. On top of all that, you are going to be told to stand or sit in close proximity to other children, and tolerate loud racket (otherwise known as singing and/or playing musical instruments). Oh......and endure it all with a smile and don't punch the kid next to you, no matter what they do to annoy you. Yeah.......sure.

This has been a tough week at school for our ENTIRE school. Elevated behavioral outbursts are pretty typical to the last week before a major holiday in any elementary school, but given the recent passing of one of our most beloved teachers, the staff is also admitting that they are all a little "off". Of course, the kids sense that their teachers are "off" and are responding with increased whiny-ness and rotten behavior. Our entire school family NEEDS this Christmas break to heal a bit from Joan's passing, which is certainly understandable. But with the Christmas Program this week and a ton of other out-of-routine events going on, Jennica has not been at her finest.

So.......Mike and I made a tough decision today after input from her teacher and weighing all the considerations and options. We've talked the's time to walk the walk. Jennica will be allowed to "skip" the Christmas Program tonight. Part of me is very disappointed. There is something very parental about seeing your child participate in those types of events. But we honestly don't feel it is a situation where she can be successful FOR HER. So why have her participate? Just so we can feel like parents? Just so we can prove that she can stand across the gym from us and be miserable for an hour? Just so we can once again watch SPD in action? Nah.......that's not what our daughter's journey is about.

I'm very thankful to Jennica's teacher for being honest with us about the expectations tonight. The program is one hour long, and her class sings two short songs at the very beginning, sits for 50 minutes on the bleachers with no activity, and then sings one more song at the end. During the 50 minutes of inactivity, they are expected to hold relatively still and listen to the 1st thru 6th graders sing, and then listen to the 5th & 6th grade bands. All while they are stared at by a crowd of 300+ adults. The auditory and visual input of this experience will send Jennica reeling into tactile-seeking input, as her auditory and visual systems will shut down in overload. Her brain will automatically seek input from tactile sensations and movement. (Her teacher noted that 10 minutes into practice this morning, Jen peeled off her shoes and socks, and then her coat. And then she proceeded to roll on the bleachers. Yep...........tactile input. Next comes spinning in circles, jumping up and down, or running around the gym. All in an effort to maintain adequate information for the brain to "read" the environment without fully-functioning auditory and visual systems. But not really socially-acceptable in the middle of a Christmas Program.)

So Jen and I are going to watch Grant's last wrestling meet of the year. We will enjoy a short drive together, eat some dinner, and relax. She can run around the gym. She can wiggle. And I can relax and not wait for her to "totally lose it." And I will remember that this is my daughter's journey, and know that I honored what was best FOR HER.

Monday, December 14, 2009

Wrestling Photos...

Dane with the "I'm gonna die!" look. :)

Grant (on bottom) just waiting to "work his magic" on his own teammate!

Dane is wrestling this year at 160 pounds, and he looks tall and skinny against the competition that we've seen him against. Wrestlers, as a whole, tend to carry their weight low and wide, which is not Dane's build at this point. I'm glad he's not going to work much at getting his weight lower, and he maintains easily at this weight. Even with that said, the team eats healthy during the week and tends to splurge on chocolate before the bus ride home from their meets on Saturdays. LOL. Also, check out the RED banana-boat-size 11 1/2 wrestling shoes. Our school colors are red and black, but our high school wrestling is a combined team of three local schools, so they wear purple and dark green during the regular season, which is a "neutral" combination and can't be associated with any of those three schools. Once we get into the championship events at the end of the year, the team splits back out to their individual schools and wears their own school colors. But until then......In any case, Dane CHOSE to buy these red shoes. Not sure why. But they look with the purple singlets. LOL.

Grant is wrestling at 120 pounds right now and I will admit to being shocked last week at his meet when he stripped his warm-ups. I hadn't seen him that close-to-naked since summer swimming, and he is now much more fit. Grant has the much broader-shouldered wrestling body type, and his arms are pretty defined. (I came home and called him Beefcake, which he thought was hysterical.) He has a much better grasp of the sport than I anticipated, and won a very difficult match in the last 2 seconds last week against one of his own teammates. He was actually behind in points with 5 seconds to go, and knew exactly the "move" he needed to perform to score the necessary points to win it. Heh.

Anyway......nice to see them both enjoying their current sport. For some reason, wrestling feels more "relaxed" to me than football or basketball. Wrestlers are an odd bunch, but they enjoy each other. So........whatever works!

Thursday, December 10, 2009

Blessed simplicity!!

Tiersten came home from school yesterday and said her day went, "Good!" Considering that her teacher passed away unexpectedly on Monday, and the children have been shadowed by grief counselors ever since, I was impressed! I know that most 6 & 7-year-olds don't totally grasp the concept of death, but I thought that by now, she might be feeling the strain of all the sudden changes. Not to mention that Tiersten (and most other children this age) is very intuitive about what is expected by the adults around her. Even Tuesday morning arriving at school for the first time since being informed of Ms. Leach's passing, you could see her and all of her friends gauging the adults' faces for how to "mimic" what was appropriate behavior for the situation. (I'm humbled, yet again, by just how much OUR actions effect those of the children around us!!)

Anyway.......back to the topic. When Mike asked Tiersten what had made her day so good, she only said one thing. "Mrs. Reinen (the substitute) only has one rule in her class. We only have ONE thing to remember. That's it!" She was SO clearly delighted by the simplicity. When prompted for what that rule was? "Always do the right thing."

That one simple 5-word sentence really encompasses what the only rule needs to be for all of us in life, doesn't it? Always do the right thing. In practice, of course, it is harder than it sounds, but for my daughter's chaotic week, it meant SO much to her to have simplicity in the transition.

To Mrs. Reinen (Vivian)..........THANK YOU! These children will forever remember the day that their first grade teacher died. For most of them, it is their first experience with the death of a loved one. THANK YOU for stepping forward and, with your experience, knowing that these children needed simplicity.

Tuesday, December 08, 2009

Still teaching us......even after she's gone

Yesterday, Tiersten's schoolteacher became ill at school and went home. Yesterday afternoon, she passed away unexpectedly.

Ms. Leach was the principal of Raymond Elementary for many years before retiring from that position and returning to the 1st grade classroom to finish out a long career in education. She was the only elementary principal that my boys ever knew, and we were thrilled this year that our request was granted for Tiersten to be placed in her 1st grade class. I always considered her to be an outstanding principal, but she was absolutely phenomenal in the classroom.

I still remember my first Parent's Night with Dane as a kindergartener. Ms. Leach was new to our school, and I was new to being a parent of a school-age child. She stood at the front of a large crowd, and exuded such warmth and excitement for the business of learning. In all the years that I knew her, she never lost that! I'm sure there had to be days that her job was tiring and challenging, but she always seemed so genuinely honored to be a part of my children's lives. And, as a truly great leader should, she always credited her terrific staff for the dramatic improvements that our school made while she was principal. Never once did I hear her accept well-deserved praise without passing the compliment on to her staff.

When she announced her intention to resign as principal and return to the classroom for her last few years before retirement, I was honestly skeptical. Would it be fair to a new principal to have the previous "chief" still on the premises? Could the staff accept her as a peer, rather than their leader? Could she narrow her world to the smaller arena of a classroom?

I should never have doubted her. From the day they hired the new principal (who is also fantastic), Joan was delighted to hand over the reins and begin the transition. On the first day of school last year, she was so excited to get her 20 kids in her room and re-immerse herself in the experience of a smaller group. I heard stories from her student's parents that watched with awe as she made tiny schedule changes in the curriculum that had large impacts on differing learning styles. I quickly learned to walk by her classroom slowly in the hallway, as the giggles and conversation from her students was such a happy sound of learning.

And Joan was also a class act outside the school. She was actively involved in so many areas of the community. so much more. Always dressed in bright, stylish colors, her blonde hair cut in a sassy style.....she was hard to miss. On Fridays, she tended to don crazy glasses or silly hats, just to make the kids laugh. In the mornings before school, and the afternoons as school let out, she was almost always in the hallway. Hugging kids that needed a little "extra," chatting with parents, and interacting. Always interacting.

Tiersten has had a phenomenal first four months of school this year. Ms. Leach was loved by the kids, but not because she let them rest on their laurels. She was there to educate.....and educate she did. At the school's request, each child in her class was told about her passing by their own family, in the manner that they chose appropriate with their own beliefs, and they gathered back as a class at the school today, with grief counselors on hand. Typical to 6 and 7-year-olds, they are saddened, but death is an abstract concept that isn't quite real.

At the moment, the community is focusing efforts on helping Joan's two young granddaughters-- both who lived with her full-time. At the request of the extended family, the school district is taking the "lead" on planning her memorial service this weekend. It will be huge and well-attended with a large meal to follow. She made us all feel like family, and we will honor her accordingly.

I spoke this evening to the retired teacher chosen to step in and substitute with Tiersten's class until decisions for the longer-term future can be made. Vivian was a long-term member of Joan's staff, was a close personal friend to Joan, was herself a phenomenal teacher, and is the perfect choice for this position at a challenging time. I can't think of anyone better to help the kids make the necessary adjustments, so that the entire first grade year doesn't become a loss of learning. Vivian was an amazing and honest presence in the classroom this morning, as the kids gathered together for the first time without their teacher. She told me this evening that she arrived at the school early this morning, grieving her close friend, and wanting to honor her in the best way possible by helping her young students understand what has happened. She had a list of things she knew she needed to get done before the class began arriving..........organize some art supplies for a grief exercise that might be helpful, find the gradebook and begin figuring out if there was anything urgent that needed addressed there, walk through the classroom and familiarize herself with student names, get a feel for the daily schedule as sticking to a routine will be comforting to the kids. And then she said that she stopped, and suddenly noticed a Christmas tree in the corner of the room. Gifts were wrapped and had been carefully placed beneath it. She thought, "No.........she couldn't have already..........." So she went closer to the tree and looked at each gift. Sure enough. Our beloved teacher had already shopped for and wrapped a Christmas gift for each child in her class. With her sudden passing, those gifts have gained so much more significance. A final act of love to her students from a teacher that always gave her all.

Even after she's gone, she's still teaching us about what it means to be a classy lady. We love you, Joan! You will be missed!!

Sunday, December 06, 2009

Catching up....soon!

Yes...........I'm still around. I promise! We've had a very busy few weeks 'round here and I'm lagging behind on blogging. Let me give a brief rundown. Very brief--considering it is 11:00 pm on a Sunday and I've been working all day. UGH!

-Both boys are heavy into wrestling now. Both are doing well, and Dane even got a 4th place medal at his first meet. Wahoo! Grant seems to win either by pin or landslide points, or get beat in the first 30 seconds. :) His "wins" FAR outweigh his losses though. He's a tough little turkey!

-We have survived Rounds 1, 2 & 3 with Jennica's sleep and seizure testing. We were supposed to be done after Round 3, but our neurologist has upgraded (or downgraded.....depending on your perspective) her to a 48-hour VEEG in January. I whined about Rounds 1-3, so quite frankly, I think I'm being punished. This will be a LONG haul and requires full admission into Mary Bridge Hospital for two full days. She will be on a 6-foot leash for 48 hours straight. And no, she will not be in a drug-induced slumber. Darn it anyway. We meet with the neurologist on the 21st for more information on why he is ordering this highest-level of brain analysis, so I'll post more when I know more. So much for thinking that sleep deprivation and wires were a challenge.

-My computer system continues to plot against me, which is making my life difficult. Also a big reason that I haven't been blogging much. I will likely be ordering an entirely new system (again) rather than spend (waste) the money on repair. Quite frankly, its more financially efficient to replace with newer and better technology rather than repair. You know how you don't think automobile air conditioning is a big deal until you've had it? I feel that way on this crummy laptop that my assistant uses daily. I can no longer live without dual monitors. WAAAAAAH. Whine........whine........whine.

-Some big holiday is coming soon. Must get ready. Must decorate. Hmmm...When? All I'm going to say is thank the heavens for and UPS delivery. Even ordering on this laptop beats running around for the next three weeks like a chicken with my head cut off. :)

My brain is exhausted, so I'm headed to bed. Will post wrestling photos soon, and other kid photos. I have pictures on my cell phone of Jennica with wires coming out of her head, but can't off-load them without the big 'puter fully operational. AAAahhhhh.


Thursday, November 19, 2009

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? :)

Monday, November 16, 2009

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 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!!

Friday, November 13, 2009

How come nobody slapped us harder?

I've done some pondering this week. I know......scary 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 ( 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 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.

Tuesday, November 10, 2009

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?? 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. 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.

Monday, November 09, 2009

A long, cool, drink of water...

It has been a brutally long few weeks around here. The list of things that have our 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.

Saturday, October 31, 2009


I'm sure I've said this before on here, but Halloween has to be the WORST holiday for SPD children. No matter how hard we try to prepare them, make schedules, talk about the sights/sounds/feels so they know what to expect......again and again and again these children fall flat on their faces.

I ended up sewing Jennica a witch costume. I have to say that I rather out-did myself. It is soft, with no itchiness anywhere, and was so "cool" that she WANTED to wear it. She wore it all day at school yesterday with no problems. Heck.....that in itself speaks volumes. I took photos and will post them when my "real computer" is back working. Don't ask.......

But she had a field trip yesterday. Field trips are tough for sensory kids on a good day without the added Halloween chaos. And this time, some brilliant teacher came up with the idea that the kids should go to our local old-folks home and sing Halloween songs. For the typical kids......fine. For the SPD kiddo? Definitely not fine. Down deep, I knew what a disaster this was going to be. But with Jen's new 1:1, who is fantastic, I decided to butt out and let her do her job. Disaster. But Christine and Jen got through it. In the parking lot. Away from the nursing home smells, noises, reaching hands, etc. Sigh.......

And then tonight, Tiersten is out trick-or-treating with Mike, while Jen and I are home. Jennica is curled up in my bed, honestly not feeling well, but even without sickness......trick-or-treating was not going to go well. It never has.

So.....I've come to a conclusion. Why in the heck do we continue to put OUR expectations on this child for holidays? Culturally, we have such a strong sense of what we want our children to experience. Often it is based on what we, as children, experienced. But you know what? This is not OUR childhood. It is Jennica's childhood. It is HER journey. Before next Halloween, I intend to have a good chat with her about what SHE wants to experience as Halloween. And thats what she is going to experience. No more. No less. So anyone that wants to parade Jennica around next Halloween? It might happen. And it might not. Deal with it.

Thanksgiving isn't so bad. food. At home. She does that pretty well. Christmas isn't so bad, once school is out. Our family Christmas is do-able for her. Valentine's Day is the next "bad" holiday, I think. I will be talking to Jennica in January. What does Valentine's Day mean to HER!!!???!!! Its time to make some deeper changes in acceptance.

Thursday, October 29, 2009


Grant (#21 at right) and team during their Championship game tonight, which they won 26-6. This was their closest margin of victory this year, and I am so proud of these boys! They are not only great football players and athletes, but are also good students with great attitudes. As Dane noted the other day, Grant's team didn't lose one single player to academic eligibility rules after grades came out. (Yeah......I agree. Thats the way it SHOULD be, but its still very rare.) Grant and my other favorite 8th graders........Darol, Alex, Stephen, Ally, Jacob, Hunter, and several others........WAY TO GO!!! I'm proud to be a fan! Now go home and start eating a high-protein diet! The high school team is going to need you next fall! :)

Tuesday, October 27, 2009

The annual pumpkin-carving!

Just finished my 7th day in a row with at least one child home from school. Nice......NOT! But we got our pumpkins carved tonight! Big fun!

Sunday, October 25, 2009

Home again.....home again......jiggety jig!

So......Saturday night, Mike and I attended WA State's Sensory Showtime. It was a GREAT event! We ate.......visited......and visited some more. So many stories and so much to learn! We are all pioneers in this journey, and trying to find answers for our children to succeed in life.

We all watched "Autistic-Like: Graham's Story" by Erik Linthorst, and enjoyed visiting with Erik before and after, as he had flown up from California to attend the event. What a great father/filmmaker that is doing really positive things promoting awareness of SPD!

There was also a fantastic panel of folks experienced with SPD from a range of backgrounds that kindly fielded questions and stories from a very engaged audience. What a great opportunity! Drs. Brock & Fernette Eide of the Neuro-learning Clinic were my personal favorites, but I'm a huge fan of their book titled, "The Mislabeled Child", and am looking forward to visiting them with Jennica in the coming year.

All in all.......everyone was friendly and openly interested in moving forward for the benefit of sensational kids. So many of us are right in the middle of the fight, with 4-7 year olds experiencing the daily woes of the disorder. Other parents with older children emerging on "the other side" were encouraging, and gave great advice that inspired us to keep going! It DOES get better.....but only if you stay focused on the path ahead.

Perhaps, if I had to name ONE thing that I will carry forward with me from the evening, was a statement from the Eides, who have a gifted middle-teen son affected by SPD, but who is currently taking online courses from Harvard. What a tremendous reminder that SPD does not equal lesser intelligence. We just have to get past the SPD to the person on the other side!

Friday, October 23, 2009

Checking out....

Mike and I are briefly checking out for a little while to attend a large SPD event. After a pretty-much-sucked sort of week........I'm looking forward to it. Nobody under 5 feet is welcome to attend, which is a "wahoo" moment for us. Thank the heavens above for whomever made this an adult-only event. This means that we don't have to drag little coats and shoes everywhere we go, don't have to buckle little bodies into carseats, don't have to have allergy-free snacks planned, don't have to try to eat out allergy-free, and don't have to listen to whining, complaining, need-to-go-the-bathroom, I'm-hungry issues all weekend. Other than MY whining, complaining.....yeah.

I'm looking forward to spending time with other SPD parents, researchers, and supporters! Since most of the attendees will be folks that have day-to-day contact with little SPD bodies, it will be fascinating to see if we can carry on conversations without constantly glancing around to see what they are touching, where they are climbing, and if they need some sort of fidget or chewy tool. Will we be capable of walking across a parking lot with adult-appropriate decorum? Or will there be bunny-hopping, monster-stomping, and other forms of proprioception outside just out of sheer habit? And imagine.........if there are automatic flushing toilets in the restrooms, there won't be any little SPD bodies to meltdown over this unimaginable horror. (A horror which almost all SPD children share, by the way. SPD parents pretty much all agree that automatic flushing toilets should be outlawed. If you disagree, I'm sure I can find plenty of parents willing to let you borrow their child for 15 minutes so you can experience what a meltdown feels/looks like up-close-and-personal in a 4 x 4 foot space. Its special. Nobody should miss out on it. me.)

But seriously.......I'm looking forward to meeting some of the folks that I know are scheduled to attend. Drs. Brock and Fernette Eide......Erik name a few. These people are doing positive things for Sensory Processing Disorder. It should be a great time to relax and share goals with people that are headed down the same road.

Thursday, October 22, 2009

Singing "Henry the VIII...."

Anybody remember that scene in the movie "Ghost" where Patrick Swayze's character sings "Henry the VIII" over and over and over again to Whoopi Goldberg's character to convince her to do something?

I'm trying to approach this next step in our journey with Jennica that way. I am armed with my Shield of Desperation, and I shall not take "No" for an answer........

".........second verse, same as the first........little bit louder,little bit worse. OHhhhhhh......Henry the VIII I am I am............."

Wednesday, October 21, 2009

Allowing myself a "down" moment...

Late today, I went careening into what a friend not-so-affectionately calls, "the trough of despair". I had some bad news regarding an important option that we were working on for Jen, and I have a sick feeling in the pit of my stomach tonight, and am fighting the urge to crawl into bed and have a good cry.

Once again...........SPD kiddos are difficult. The disability is very real, but there are no obvious symptoms that pave the path for us to services. No feeding tubes.....not even facial features that convey their disability. SPD children look beautifully, wonderfully normal. Their disability is all on the inside of the brain.

So.......I'm going to have to take this setback in stride. Somehow. My plea will be re-written, in a more passionate format. More phone calls will be made. More resources will be tapped for advice. My daughter NEEDS the service we've requested.

But in the meantime, I'm going to have to swallow some pride and probably let go of some tightly-controlled frustration. I'm always afraid to let my emotions show, as I fear that once the floodgates open, I'm not sure I'll get them closed again. But this time........"no" just isn't an option. But sometimes being responsible for your daughter's future by how passionate you can plead her case is a heavy load to bear.

Pleasantly surprised at being impressed

Go ahead.......turn on the news, open a newspaper, or read a magazine. They'll be sure to tell you......the American educational system is in disarray, our kids are not keeping up with the rest of the world, and most teachers are lazy folks that just chose the profession to get their summers off. Right? Thats what the media it must be true.

With four kids in public school, I'm spending more time than ever at the school. Particularly with my wonderfully (but disruptive) kindergartener. She's continuing to struggle, but I will admit that we've set the bar very high for her, and we refuse to lower it. We communicate constantly with her teacher, and are advocating advocating advocating (which is the 2009 word for nagging). But in addition to Jen's issues, Mike coaches for the district, so he is on the high school campus daily. We attend a minimum of two football games per week, plus the occasional volleyball game, which will soon "morph" into wrestling meets and basketball games, and then "morph" into track meets. I was also involved last spring with hiring the new high school principal and, generally, attend those occasional parent meetings regarding whatever curriculum changes, etc. that they feel that involved parents might want to know about. Our school is doing a great job everywhere, from what I can see, but the latter is what put me in the school last night.'s the setting: The superintendent and both of our principals presenting their reasoning and strategies behind moving our K-6 school into a standards-based grading system this year, and explaining how its going to work. Twenty-thirty parents in attendance. I admit to having been skeptical about what I knew of standards-based grading, but keep in mind that I have two high-achieving sons in the high school, a first-grader doing well, and a kindergartener that bucks every system, regardless of what the system is.

Once again, I was pleasantly surprised to leave the meeting absolutely blown away at the dedication and commitment that our school administration and staff applies to education. Unbelievable! When Dr. Holland (our superintendent) broke it down and applied the reasoning behind standards-based grading, I was easily able to see how it has the potential to dramatically improve student learning. But, WOW, it also takes a huge amount of dedication from the teachers to make it work.

Simply put, if you are a patient going in for heart surgery, do you want a doctor that was given "extra credit" because he had great attendance, a good attitude, and great effort, but didn't have the best skills at actual heart surgery? Or do you want to recognize his great attendance, good attitude, and great effort for what it is........GREAT........but also make sure that he's able to perform heart surgery? The two things are NOT one and the same! By dividing academic accomplishment from citizenship, we can make sure that our kids come out of the school with BOTH academic accomplishment AND great citizenship. And if their are "holes" in their learning, we will know exactly where those "holes" are so we can address them.

Fascinating stuff! I can hardly wait to see how this is going to work in "real life", but I commend our district AGAIN for making tough decisions for STUDENTS. And making their own jobs harder in the process. WOW!

Tuesday, October 20, 2009

Grant........Idle for the 4th day

Grant is continuing to run brutally high fevers. Swine flu? Possibly. But whatever it is, he's camped on the couch for the 4th day in a row. All sense of luxury and laziness has worn off, and he's beginning to get mentally bored. Keep in mind........this is a very driven kid with a highly-active brain. Couch + movie + movie + movie = Weirdness. His brain is still going Mach 5, but the lack of input is similar to watching a hamster running on a wheel. a sick sort of way.

The conversation, over the course of about four hours this morning, went something like this:

Grant: "You know......I wouldn't want to be employed by Darth Vader in a high-level position. You're likely to survive a lot longer as a stormtrooper than as one of Vader's second-in-command."
Me: Blank stare. He has a point.........but is he seriously contemplating this?

And 20 minutes later......
Grant: "Why would someone learn to speak Ewok? And how did a little kid (Anakin) manage to teach C3PO six million languages? I mean......c'mon........."
Me: "Maybe they downloaded the languages. From YouTube."
Grant: Laughing. (He actually thought this was a good answer!)

And an hour or so later......
Grant: "How come the Emperor didn't show up until the 6th movie?"
Me: "Who cares?"

And another 30 minutes later....
Grant: "The Rebellion really needs to work on hiding their bases better. I mean........they just barely got settled on Hoth and the Empire found them!"
Me: "Maybe you could work in that capacity for them. You know......scouting planets for potential bases after the next time the Empire blows them up."
Grant: "Nah. They won the war, remember? At the end of "Return of the Jedi." Besides, this was all a long time ago in a galaxy far, far away........"
Me: "Oh yeah." NOW he points on the "reality" of the conversation. How foolish of me.

Yep. Like a hamster running on a wheel. All the parts of his brain are still functioning, but he's not getting anywhere. Too funny.

Monday, October 19, 2009

There's losing......and then there's losing to jerks!

First, let me give a well-deserved pat on the back to Grant and his fellow teammates. As "only" junior high, they tend to get overlooked a bit, but they are truly amazing! To date, they remain undefeated in football. Their smallest winning point margin has been 30+ points. They are literally decimating their competition. We've had parents of several opponents complain that they are much more like playing a high school junior varsity team than a junior high team. So.......WAY TO GO! (At the moment, they are also all sick, or recovering, or about-to-be sick. Grant has run 103+ degree fevers over the weekend and is home from school today. Much of the team was out sick last week, and I'm sure that the remainder will be out this week, along with Grant. Seems that they share more than their winning spirit!)

So......with well-deserved kudos to Grant and friends.......I'm sorry to say that Dane has had the opposite rotten luck this year of playing on a struggling team. We knew that it was going to be a re-building year. New coaches with an entirely new type of play..........lots of new kids.......and it hasn't gone well for them. Over the next two years, we lose a total of 6 players through graduation. Three seniors this year, and three seniors next year. And we gain at least 15 players with Grant's class next year, and at least 15 the following year. 6 out and 30 in!! That alone is hope for the future. Football is a sport that there is strength in numbers, despite the fact that you can only put 11 boys on the field at a time. As a parent, its been frustrating to sit in the stands and watch them struggle through another season, but there are SO many things wrong that they just can't all be fixed in one year.....

But this past weekend, we played a team that is a very personal rival of a different sort for the boys. As parents, most of us tend to direct venom at a different school nearby that we've already played. We gripe and grinch and refuse to buy concessions at "their house" just out of principle. But for the boys, THIS is the school they hate and for very clear reasons. You see, our district "links" with these other two districts and allows what is commonly referred to as "choice-ing", meaning that you can attend any of the three separate districts, regardless of where you live, as long as if you choose to attend one of the schools outside your "home district", you apply and are accepted into that student body. (As a whole, I like this option. I feel strongly that, from an academic standpoint, it has strengthened all three schools as they all desire a higher student count to acquire more funding. Let me also say that I think that Raymond has, by far, met the academic challenge the best. If I'm be it.) The team that we played this past weekend? No less than seven of their starting line-up are boys that attended and still live in our district. Needless to say, when we are struggling, and we face kids that our boys attended elementary school with and, in some cases, still live next door to, and "we" are struggling and "they" are winning, it brings up terms like loyalty. None of these boys claim to have left left their home district due to academic reasons. Its all about sports. Which tends to make the boys that consider themselves "loyal" very angry and bitter. Interesting...........I won't pass more judgement than that.

In any case, I think our boys could have handled simply losing. They've lost before. They'll lose again. They know that. But the boys on the winning team play a very dirty, ornery game of football. They twist the ankles and knees of their opponents at every opportunity. They hit and punch on the bottom of the pile. They grab face masks whenever they think the referees aren't looking. They are excessively verbally abusive on the line of scrimmage (pretty much all high school football is somewhat verbally improper on the line). And that.......THAT........has added a slow burn of fury deep in the bellies of our football team. Our boys had some personal fouls at the end of the game for finally yelling back....and I couldn't blame them. And they had the spines to not hide behind their teammates and be sneaky about it.

I'm not usually a Mom that preaches vengeance and retaliation. But I hope.......I truly hope.....that there will be some justice for Dane against this team before he graduates from high school. I haven't said that to him. I probably won't. But I would like to see my son have the points on his side of the board exceed this particular opponent.

Either way, my son will emerge the better man. Loyal, honest, and not cheating behind the backs of the referees.

Friday, October 16, 2009

Adrenaline's day off...

Today is my 41st birthday and I'm giving my adrenal glands the day off. If you don't live a super-high-stress life, you might be saying, "HUH?"

Adrenaline is that magic substance in our bodies that allows us to keep going, against all odds. Its that thing that keeps us changing loads of laundry at 10:30 pm after a long day of work, occupational therapy, ball games, and homework. Its that thing that allows us to smile pleasantly at our children when they drag the birthday invitation out of their backpack for the party tomorrow, and they need a gift that we're going to have to buy/wrap/etc. Special needs Moms are notorious for having badly depleted adrenal glands. So are combat veterans at the end of a tour of duty. Coincidence? Not according to my doctor, who argues constantly with me about what long-term stress does to your adrenaline supply and, subsequently, the body.'m ignoring as much as possible. I took a gluten-free/dairy-free cupcake for Jennica down to the school, so that she can have something to "buy" at the Recess Bake Sale today with the 50 cents she took. I went out to the barn, exercised my horse, and groomed him from head to tail. I bought a mocha smoothie. And now I'm going to take a nap, or lay on the couch and stare at the ceiling until the school bus comes with girls. Because I can. And then I'm going to go to the football game tonight and watch Dane's team get to win. (Sorry Dane. I'm a realist. It ain't gonna be pretty tonight.)

A year ago, when Jennica was first diagnosed with SPD, I would have felt guilty for not spending a day of free-time researching and reading. Not so much anymore. I've finally realized that this war is not going to be won or lost in one day. Its not even going to be won or lost in one year. So I might as well get rested while I can because the next battle is most surely coming.

Thursday, October 15, 2009

He's BALD!

No....Grant is not afflicted with some horrible, dreaded disease. And no, I didn't have ANYTHING to do with it. He came home from football practice like this on Wednesday, in honor of this week's "big game". I suppose I should be grows back. Someday it might be a tatoo.

Tuesday, October 13, 2009

Million-Dollar Baby

Jen and I spent part of Monday at the Mary Bridge Neuro-developmental Clinic in Tacoma. I wish I could say that this was our first time there, or that it would be our last. But it was neither. Bummer. In any case, I'm grateful to have a neurologist there that I can speak openly with. Neurologists are caught in a tough situation with SPD kids at the moment, as their medical diagnositic guide doesn't recognize SPD, and therefore, neither can they. Officially. But with that said, our neurologist very respectfully focuses on Jennica from a functional standpoint, which addresses her SPD through a backdoor sort of approach. It works. And its a much better situation than the repeated denials and door-slamming that some SPD families deal with.

To achieve the highest level neuro-functioning possible, which is particularly necessary for a child with nervous system dysfunctions, you absolutely have to be in the best physical health possible. Period. Every physical body system that is not functioning at its utmost is a possible distraction from the nervous system. Hence, the reason that the last year has been spent dissecting her nutritional intake and absorption, food intolerances, toxin levels, and on and on and on. Even the physical exercise she receives is somewhat designed to maximize neuro-function through occupational therapy. Rhythmic motion.......heavy work........upper body muscle........etc.

And, of course, as I've mentioned here numerous times, we've got some ongoing struggles with her physical health. None of them are outwardly visible. Her immune system is tip-top. Her growth is balanced and on the high end of the charts. But the issues are there and we address them daily through her diet, carefully limited exposure to toxins, supplements, etc. Our bases are covered. Or so we thought. came as a surprise two weeks ago when we got hit by a double-whammy from two different sources regarding two separate issues. Had we seriously considered the possibility of a sleep disorder? And did we know that SPD children often have invisible seizure activity in their brains?

I felt like the rug got ripped out from under my feet by those two questions. Part of me wanted to slam the door and turn off the lights. I was instantly resistant to asking more questions, as with questions always comes the inevitable, "Well, what do we do about THIS?" And the treatment load subsequently increases.

But the other side of me knew. These are HUGE potential issues and Jen has symptoms of both of them. To move forward without addressing them could cause her to not progress forward. Or worse........progress forward only to move backwards again in a few years when these issues forced themselves into the forefront. Its better to address them now.

So.....the neurologist agreed yesterday with my opinion. There is enough evidence based on Jen's symptoms to validate the testing. And the sooner it is done.......the sooner we can either breathe a sigh of relief and check it off the list as a non-issue, or deal with it and move forward.
But in the meantime, it means another specialist. Another office. Another appointment. Another 200 mile drive. Another set of tests. Another wait for results. Another conversation where we start from the beginning and tell our story.

Horror-ific Halloween!

This is going to be our first really "sensory-aware" Halloween, but I gotta tell ya.......every Halloween with Jennica has been rough. The only difference this year is that now we understand WHY its so rough.

First of all, let me say that I LOVE this time of year. I say that at the start of pretty much every season, but there really is something special about fall. The winding down from home more. I enjoy the rain starting (yes.....I know that there are those of you that claim that it never stopped), the days getting shorter, the chill in the air, the cold breeze, the horses getting fluffy winter coats.

And Halloween. Somewhere between my childhood (which was yesterday, DARN IT) and the present, Halloween became a HUGE holiday. Anyone else notice that? Halloween used to involve about a week of art projects at school, carving a pumpkin, a costume, and that was it. rivals Christmas. The stores are filled with Halloween stuff right after July 4th. Its truly insane! And when did Halloween become such a holiday of, "How trashy can our daughter dress?" What's with the sexy costumes for 6-year-olds? Anyway.......

In any case, Jennica has been asking for at least a month when Halloween will be here. Once again, its the child needing to control as many pieces of her environment as possible, since so much of her environment is beyond her control. I've shown her on the calendar repeatedly, "We're right here.........and Halloween is here." Now, we're down to counting the days. But she has been asking like crazy to go to "the Halloween store." Mike took her to Party City last fall on one of our many doctor's trips, and she has never forgotten it. So, since the minute that she saw the first signs of Halloween this year, she's been asking to go. Yesterday was the day, since we had a little time after her OT and doctor's appointment in Tacoma. (More on the doctor's appointment later....)

I was actually looking forward to going to Party City with Jen. They do Halloween "right" there, complete with the music, the lights, the is truly a Halloween experience. And a sensory nightmare, as I found out. Jennica was SO wanting to be there, and all 48 pounds of her climbed my leg. I managed to peel her off of my back when she landed somewhere near my shoulder blades, and plunked her into a shopping cart. She quickly found a witch's hat, crammed it down over her eyes, and told me to tell her "when the scary stuff is gone". Well........the whole store is full of scary stuff. That is the point of the whole place. I told her we could leave, and she insisted that she didn't want to go! Sigh............She lifted up the hat enough to glance around once of twice. And crammed it back down. The undeniable highlight was a fellow shopper that Jen thought was a statue standing at the end of an aisle on one of her brief glances. And then the shopper moved and Jen screamed bloody murder. It wasn't nice.......but I admit that I laughed.

We got out of the store with this year's Halloween costumes in their bags. A cheerleader for Tiersten, and a witch for Jen. All was good. Until we got home and I quickly discovered that this witch costume is a tactile nightmare. The sleeves are puffy tulle things that scratch and itch, there is scratchy itchy lace around the neck, the skirt is puffy tulle underneath guessed 'er......scratches and itches. GROAN.........I should have thought of that. Of course, Jennica is in love with this costume, but she can't stand to wear it for 60 seconds. I told her that I was going to take it back and she flipped out. I offered to MAKE her a witch's costume ( my "spare time") but she insists that she wants THIS costume.

So...........I haven't figured out quite what I'm going to do. I have 2 weeks to decide. Less if I'm going to end up sewing something. But I can guaran-friggin'-tee that Jennica wearing the costume she has is going to cause a Halloween of nightmarish proportions for anyone within 100 yards. Taking the costume back is going to cause a problem, too, so I've got to weigh my options carefully.

I still can't believe that I didn't handle the costume issue better. I was thinking about getting her out of the store as quickly as possible, and gauging the chosen item from an SPD standpoint just didn't click through to me. I was thinking "cute"...........not "itchy." So..........maybe there is a business here for me. "Sensory Costumes??" Anyone? UGH!

Tuesday, October 06, 2009

A "Wahoo!" Moment

Every single day after school and before dinner, the girls and I head out to the stable to feed Yodi and do other "horse-owner" things. Its become a pretty good routine for us, and they both look forward to it. As well as genuinely enjoying the horses, the girls have become great friends with the boys of the stable owner. These boys are typical, grubby, dirt-loving its rather amusing to watch the once-prissy Tiersten and Jennica get good and muddy, or covered in sawdust, or catching bugs, or climbing trees, or whatever.

In any case, yesterday the girls were out in front of the main barn playing with the boys, while I was down the barn aisle cleaning Yodi's stall. A few minutes before I was ready to leave, Jennica came walking quietly down the aisle and told me that she was going to be out in the Durango waiting for me. She didn't seem upset at all, but I instantly figured that she must have lost an argument with the other kids, or gotten her feelings hurt, or some other such "kid stuff". I told her that was fine, and that Tiersten and I would be out in the few minutes. The Durango was literally parked about 50 feet away in plain view, so I wasn't too worried.

Within about five minutes, I wrapped up my work and Tiersten and I headed to the car. Sure enough......Jennica was sitting happily in her carseat and reading one of the magazines that I keep in the backseat for them. Odd. I asked her if she felt sick and she said that she was fine. She just wanted to read. Heh.

And then I looked over to where the boys were still playing. They had found a big chunk of plastic culvert somewhere, and were taking turns crawling into it and then "rolling" each other around the driveway. Bingo! My lightbulb came on! I confirmed with Jennica that she had, indeed, taken her turn in "the tube". The type of spinning motion that she would have experienced as she was rolled around the driveway is called "vestibular input" and it is something that is part of her sensory disorder. Because you don't often put a child in a horizontal position and spin them, its not something that many people are familiar with, but I've seen Renae work with it at therapy. Jennica does NOT handle it very well, and it is brutally disorienting to her.

The "wahoo" part? She handled it in a calm and reasonable manner!!! And on her own!!! No screaming! No hitting! And no running away! She quietly removed herself from the environment and chose another appropriate activity.

Is that progress? It sure looks like progress! WAHOO!!!

Saturday, October 03, 2009

A new question to ponder and explore...

Jennica had massive sleep issues a few years back. If any of you parents out there have experienced sleep issues with a child, you know that this is the absolutely about the hardest thing in the world. I prefer to read about midnight in Cinderella, and not really experience it firsthand with a child still bouncing off the walls of my living room. At its worst right about the time she turned two, we thankfully found melatonin after about 5 months of nobody sleeping, and she still takes 5 milligrams every single night about 30 minutes before bedtime. Melatonin is something we make sure to never run out of. We have occasionally been able to cut the dose down, as 5 milligrams is a very large dose even for an adult, but for the most part, her brain demands the full 5 mg to do its thing. (For those of you that might not know about melatonin, it should be present naturally in all of our bodies and is released when the body is ready for sleep. Children with neuro-developmental disorders, for an as-yet-unknown reason, often don't have enough melatonin, or the melatonin they have doesn't trigger the sleep response that it should. So........its very common to supplement their bodies with melatonin to help trigger sleep. Interesting, huh?)

In any case, melatonin supplementation worked instantly with Jennica. From all outward appearances, she now sleeps normally like everyone else in our house. As long as she has her melatonin supplement. All is good, right?

Jen is suddenly struggling with staying awake in class in the afternoons. She hasn't napped regularly in over a year, so we have assumed that her brain is so exhausted by the massive sensory input that she is receiving that her brain is simply "quitting" for awhile on some days. She is typically falling asleep during afternoon circle time about 2 days per week, and the teacher is wisely allowing her the rest. We've just figured that she would slowly adjust to the sensory environment and no longer need this little nap.

But this week, we had an odd question. Does she have a sleep disorder? My instant answer was, "No. Not as long as she has her melatonin. Once she is asleep, she sleeps long and hard." But an interesting conversation followed with some interesting points that made me stop and think. Bottom line........Jennica DOES show some symptoms of a sleep disorder. Hmmmm........

So, now we have something new to check out. She appears to be sleeping normally. But is her brain really dropping into the very deep level of sleep that allows true rest? Or is she experiencing only "survival sleep"?

We are headed back to the neuro-developmentalist on October 12th. Now we've got a brand new line of questioning for him. I'm sure he'll be thrilled. :)

Friday, October 02, 2009

A phrase for Friday

Be master of your petty annoyances and conserve your energies for the big, worthwhile things. It isn't the mountain ahead that wears you out - it's the grain of sand in your shoe. -Robert Service

I think I'd better repeat the phrase above about 1 million times. Be master of your petty annoyances....UGH! Someone out there is bound to find humor in how my Friday went, so let me share......

First of all, let me remind you that I have greatly cut my work hours. Not really willingly, but I guess it has been a choice--like eating food and sleeping is a choice. Its just a sheer necessity. I was scheduled to spend my first nearly-full day in the field since school started. And then I found out that Jennica was going to have a substitute teacher. That, in itself, should have been a huge warning, but one of my appointments, in particular, would have been brutal to re-schedule. So Mike and I discussed it (yes.......I'm sharing the blame) and decided that since the classroom aide and Jennica's 1:1 aide would both still be present, she should be okay. Right?

At 11:15, my cell phone rang. I was in the middle of a property evaluation, but I carry my cell phone with me at all times for security reasons. I glanced quickly at the Caller ID and saw that it read only "private." So I didn't answer it. But I knew. In reality, even if the Caller ID had identified that the school was calling, there was only a 25% chance (1 in 4, right?) that the call would be Jennica-related. Uh-huh. Sure.

Of course, I completed my visit with the property owner and checked my messages. No surprises. Jennica was parked in the nurse's office, complaining of a stomach ache. If her regular teacher had been there today, I would have talked to her on the phone, and we would have problem-solved. I was 99% sure that the stomach ache was a symptom of anxiety from the change of routine. Hailey and I have a relationship that spans two years and a lot of hours dealing together with SPD. But Hailey's abscence was already the likely cause of the anxiety, and who else was going to have a clue how to lower anxiety in an anxiety-ridden situation? Not to mention that I was going to sound like one, nasty parent if I demanded that they send my daughter back to class.

But, from a sheer convenience standpoint, this is the only time in over a month that Mike and I were both over one hour's drive from the school. Of course. Thankfully, the nurse is a friend that was kindly able to understand the situation and, since Jen wasn't running a fever or barfing, was happily willing to keep Jennica with her until I could get there. (Thank you, Brenda!!) So.......Jen hung out. Took a nap. Made herself look as pitiful as possible. Enjoyed the sympathy.

So.....I showed up to find her resting comfortably. She'd just woken up from a lazy nap. Boots kicked off. Head on a pillow. Covered with a blanket. She was happy to see me, we retrieved her backpack from her classroom, and we came home. No stomach ache has been mentioned. Not once. See photo of my "appraisal assistant."

In reference to the phrase noted at the top of this post, this is certainly not a "worthwhile thing" to be overly annoyed with, but it was a "grain of sand in my shoe." Just gotta laugh and keep going.

Wednesday, September 30, 2009

Trying not to take it personal.....

The school has completed their required evaluation on Jennica to determine her qualification for special education services, which means that today we completed the next step....the evaluation meeting. This is where all the findings are presented, everyone on Jennica's team is asked for any further comments, and then the go-ahead is given to write the IEP. Papers are signed......blah blah blah. She qualified, which we already basically knew. We already knew all the people at the meeting, and all in all, its a pretty workable situation.

Typical to children with SPD, Jennica has to be qualified for services through, essentially, a back-door. Sensory Processing Disorder is not a "real" diagnosis, so the school has to approach her issues from a purely functional standpoint. Okay......we get that. Its a tad annoying, but we're sort of beyond that point. Same Sh*t, different setting. We've been through this routine a few times now. Yes...........SPD is not a "real" diagnosis. So, tell me, that special education service that we're putting in place to prevent her from bolting off the school campus? WHY does she do that? Oh yeah......its sensory-based.......oh but wait........sensory isn't real, right? (Just venting.....) I hope that in Jennica's liftime, her diagnosis will become "real".

In any case, I had a rather odd reaction to the evaluation meeting that I didn't expect. From an intellectual level, I know what Jennica's issues are, and I address them pretty openly on a daily basis. It is what it is, right? Much to my surprise, hearing someone else refer to my daughter's issues as "functions poorly......" in such-and-such setting, or "needs significant assistance....." to complete such-and-such, royally ticked me off!! How dare you insult my daughter!! My mother-bear instincts came out in force! Heh.

So, it was an interesting moment for me. Mike wisely nudged me under the table when I started to come out of my chair, which fortunately, made me take a deep breath and realize that Jennica needs everyone to be on the same team. They weren't telling us anything we don't already know! They don't totally grasp the reasons behind her behaviors (yet) like we do, but there were no suprises.

I have some more self-examination to do before the IEP meeting. Perhaps, I have not yet grieved and accepted as much as I thought I had? Not sure.....

Tuesday, September 29, 2009

Sixteen.........., Part 2

1) Dane drove Grant and himself to their orthodontist appointments in Aberdeen this morning. WEIRD! But nice!

2) When asked, Dane told me that he doesn't have a nickname for the Explorer, but that a teammate refers to his beat-up Subaru as the "Shaggin' Wagon". Too funny! It brings back my own high school memories of various school chums' vehicles. Primarily, a certain gentleman that is now an elected state official that had no front passenger seat in his car, so his girlfriend either had to sit in the back seat, or a lawn chair placed on the front floor, when riding with him. And the old brown van that we all knew and loved with the maple leaves painted on the sides.... :)

3) Lastly, Dane has been informed that if he should happen to acquire any speeding tickets, he will no longer be driving an unnamed Ford Explorer, and will instead be riding a great big, yellow "Loser Cruiser" a.k.a. school bus. my sense of humor going to worsen or improve in the next two years until Grant gets his driver's license? Hmmmm.........It will be interesting to see......... :)

Monday, September 28, 2009

Sixteen and lovin' it!

I tried to explain to Dane that in 20-30 years, this will be his picture for "Did you see the picture of Dad that Grandma has?" and "Dad, you were SKINNY!!" and "Nice wheels, Dad! (followed by laughter)." Nothing quite like a photo of a young man with his first vehicle to bring on the comments from our children. Been there and done that! Both as the child AND the parent! This photo is a "keeper"!!!

Saturday, September 26, 2009

Two boys...two football teams....same school...FAR different results!

Anyone that checks in here regularly already knows that my two boys are football obsessed. (Mike coaches with the high school team, so that really adds another football-obsessed "boy" in our house.) Anyway, Dane and Grant will play on a total of 7 different sports teams during this school year, but is KING. This will be our last year of them playing on two different teams, as next year Grant will be a freshman and join the high school team. But for time being, Dane is a sophomore on our high school team, and Grant is an 8th grader on our Junior High team.

Our Junior High games start late in September, so Grant's first game was this week. Based on their athletic performance last year, we sort of knew that these boys were likely going to be tough this year. That is an understatement. They crushed neighboring Ocosta 38-0 and barely broke a sweat. The score could have been much higher, but our coach wisely gave some playing time to our young 7th graders, and experimented a bit with some plays that aren't yet polished. Our boys are big and strong and very, very fast. These are the same boys that dominated our league in basketball and track last year, and the same athletic skills are showing in football. It was fun to watch them win their first game, and I don't think it will be anywhere near their last.

Now.....our high school struggling. We are heavily weighted to sophomores and freshmen on the team. Dane is a sophomore, and rarely comes out of the game, as he's playing the line on offense and defense both. We started the season very short of players, which has somewhat resolved, but we've still got many kids that never get a break except between quarters. The physical differences between sophomore/freshman boys and junior/senior boys is surprisingly and consistently obvious in football.........The younger kids often have the same speed, but they lack the sheer size and brute strength. Our poor linemen are getting hammered at every game, and they just can't hold the bigger kids through four whole quarters. So.......Dane's team has been on the opposite end of what Grant's first game was. We're hoping that might change in the next few weeks, as we might be facing some weaker opponents than our early schedule held, but so far........the scoreboard has been ugly. With that said, they have improved MILES above where they were last year, and I'm ecstatic that they aren't giving up!! Give them a year or two to mature (and gain Grant's athletic class) and things are going to come together.

In the meantime, I think we're going to live the "thrill of victory" on Thursday nights, and the "agony of defeat" on Friday nights. UGH!

Thursday, September 24, 2009

Spreading the word about SPD

Finally..........I'm beginning to see more things about SPD. But I'm looking for them, and I'm looking hard. I'm trying to find my counterparts in this fight, so that we can join together in promoting awareness of the brain-based disorders that are NOT autism.

I'm a part of a small group that understands and views SPD from up-close and personal. It is crucial to the success of all people with SPD, but particularly the children, that our society becomes aware of this brain-based neurological disorder that is estimated to affect 1 in 20 people.

I haven't yet viewed the film, "Autistic-like: Graham's Story" by Erik Linthorst. But I'm going to soon! If you have the opportunity, please view it. Not all children with autistic-like symptoms have autism. Help us help our children by clicking on this link:

50 years!!

My parents were married on September 22, 1959. This past Tuesday was their 50th wedding anniversary. 50 years. 50. Years. WOW! That's a long time.

I had hoped to smuggle a wedding photo of them, scan it in, and post it here. Just for the fun of it. It didn't happen. So this post is "photo-less". Oh well. Maybe another time.

I know that not all of their 50 years of married life have been easy. Frankly, I couldn't be married to either one of them for 6 months, much less than 50 years. Don't get me wrong--I love my parents. But they're both "weird" in their own way. So am I. I can admit that.

My parents have grown closer in recent years than I remember them ever being during my childhood. In retirement, they are bordering on inseperable. Its nice to see them enjoying each other's company. They spend time these days doing old people things. Dad talks about the weather a lot. They go to Walmart. Together. Weird.

My sisters and I debated on a 50th Wedding Anniversary gift for them, but seriously, what do you buy people that already buy what they want? Not that my parents are wealthy, but they are comfortable. They aren't cruise-ship people. So short of buying them something they don't really want, we're kind of stuck. I don't think the gift decision is final yet, but it doesn't make a lot of sense to buy them something they don't really want just to say we got them a gift.

So.........a heartfelt Happy 50th Anniversary goes to my parents! They've overcome some pretty big obstacles to reach this point. I'm going to stick with my opinion that50 years is a LONG time.

Monday, September 21, 2009

My officially-licensed teenage driver

I am so, so, so, delighted to report that Dane is now an officially-licensed driver! WAHOO! I think it is safe to say at this point that I'm not one of those sniffling parents that is crying over my oldest son growing up. Don't get me wrong-----I'm going to miss him in 2 1/2 years when he goes away to college. But its also very exciting to see him reaching these milestones and gaining more independence. Not to mention that he and Grant will be playing a total of 7 school sports between the two of them this year, and I am thrilled to have Dane sharing some of the shuttle services to and from practice.

So.........he is all set up and driving his new-to-him Ford Explorer. Washington State laws are fairly strict regarding his passengers, but he can drive his brother around, and even his sisters if necessary. I'm doing the happy-dance!!!

Sunday, September 20, 2009

RE-shopping for school

Comparatively speaking, Jennica's tactile issues with clothing are relatively minor compared to a lot of SPD kiddos. She definitely has times where she seeks naked-ness, and she goes through phases where she will ask for tags to be cut out of shirts, but she's not near as bad as some. In the past, she had a definite preference for soft cotton leggings over jeans, but over this past summer, she wore happily wore jeans and jean shorts much of the time. Probably the toughest issues involve shoes, as she likes to sensory-seek through the bottoms of her feet, so she tends to chunk off the shoes at every opportunity. Otherwise, the clothing issue is controllable--most of the time.

With the willingness to wear jeans over the summer, I bought some jeans for school. I honestly didn't put a lot of care into choosing her school clothes, as I didn't really have any expectation that tactile defensiveness was going to be a problem this year. I bought some polo-type shirts with buttons on the front. I bought some long-sleeved shirts. And.......the jeans. Oh......the jeans. Unfortunately, when the brain experiences sensory overload from too much auditory and visual input, it tends to "run over" into other areas as well. She is wildly sensory-seeking these days, especially orally. Long sleeves and buttons are the first things to get chewed. And, all the sudden, she's adamantly refusing to wear anything other than what she calls, "Soft clothes!!!!"

So.........I got to re-shop for Jennica's school clothes this weekend with very specific goals. No buttons/frills on the fronts of any 3/4 or long sleeves.........the "plain-er" the better.......and "soft" pants. I was hoping to get some short-sleeved shirts on summer clearance. Wrong. So I ended up coming up and shortening some sleeves. Good thing I sew. (Yeah........shut up. My mother tried very hard to make me a Betty Homemaker. A little bit of it stuck......) I was pretty successful on the "soft" pants. Thank heavens leggings are in style!!!

So.......I'm hoping that getting dressed in the morning goes a little more smoothly this week. If I can avoid ONE fight, it will be worth it.

Friday, September 18, 2009

Wednesday, September 16, 2009

Me.......with a rainbow-colored afro and a "kick me" sign on my back...

Tonight was the notorious, annual "Back-to-School-Night" at our elementary school. Please......let me contain my excitement. Its really not all that bad, if you don't mind a large crowd of parents and students crammed into a cracker-box gymnasium that is too small for this purpose, and then surviving the crush of this same crowd as they file in a not-so-orderly fashion down the hallways to find the classrooms, visit with teachers, blah blah blah. Wow! I sound like a real grouch, don't I?

Have I mentioned that highly-advertised Book Fair is also part of this event? And thats where the trouble started.

I got up this morning with a plan. That was probably my first mistake, but planning everything is a natural outcome to always trying to avoid "those scenes" with a special needs child. Seriously........I was admittedly probably a borderline "control freak" prior to Jennica and now I plan endlessly. plan was to take the girls to school this morning, and "shop" the Book Fair with them before school started, which would allow us to avoid the over-crowded elementary library tonight. Tiersten flatly refused to join in this plan, and insisted on riding the school bus. Fine. It sort of hurt my feelings, as I was looking forward to picking out books with her, but whatever. I understand that first graders still think the school bus is cool, and she considers her bus ride to be a social adventure. So......Jennica and I hit the Book Fair with about 10-15 other early birds. Wahoo.........right?

To put it mildly, Jennica and I ended up in a battle. I set her limit at two books. She said five books. I said two. She said five. I held my ground. She threw a fit. A big fit. A HUGE fit. A fit so HUGE that it resulted in one of her rare tantrums that involves her losing all sense of self-control. I finally ended up carrying her out of the school and out to the Durango, flailing wildly the entire way, where I was able to simply sit quietly with her until she could regain control of her rage. There is no point to doing anything else in these types of tantrums. Don't give in.........but its useless to try to "talk" her out of it. It's better just to hold your ground and let it run its course. Eventually, the "real" Jennica began to re-emerge, and then she was sobbing in remorse for kicking and hitting me. We got through that wave also, and she finally went to school and joined her class (now in session) for the rest of the day with no other major problems.

As for me, I wish it were as easy to shake it off. Instead, I have been frazzled for the rest of the day. The witnesses to the whole event were numerous, as I packed her through the entire arriving school population out to the car. Even my high schoolers across the street informed me after football practice that word of their little sister's fit had reached them. Just grand. The school staff that witnessed it were stunned, as this was probably the most explosive they have ever seen her. (Yeah............I know. But its typical for kids with this type of neuro-developmental disorder to save their most "special" fits for Moms.) They all congratulated me on how calmly I had handled the situation, but their kind words don't make it all go away, or make me stop second-guessing myself as a parent.

And then, back to the school tonight. I'm sure that the majority of the people there had no clue as to what had taken place this morning. So why did I feel like I was wearing a rainbow-colored afro and a "kick me" sign on my back? Most parents have dealt with a public show of bad behavior at one time or another, but the level of rage that Jennica exhibited this morning? Uh.......not so much. Still, I know that I handled it in the best way possible for my daughter. Why do I still care what they are thinking and saying?

I guess that I'm having to come to terms with the fact that I have always been one of those people considered to be an "over-achiever" (I hate that term, by the way), and I don't know how to merge the fact that I feel like I am a darn good parent, with the fact that this little brown-eyed girl that I love so much is challenging me beyond any challenge I've ever faced in my life. I've never faced a challenge that I couldn't overcome with hard work, common sense, and a logical approach. But this.........its not entirely my journey. Jennica also has to step up and take some ownership in her choices and decisions. I can provide the discipline, guidance, tools, therapies, and most of all love. But, in the end, its still her journey.

Tuesday, September 15, 2009

Laughing out of frustration...

My daughter got off the school bus this afternoon, and I could see at a distance that the entire front of her shirt was soaked from chewing on it. I groaned inwardly. Its an obvious indicator of a sensory system on overload. Today is the first day that she had worn this new shirt, and it has tiny holes chewed all the way through the fabric. She was wearing one of her "chewelry" necklaces, but for some unknown reason, the fabric was meeting her chewing need better than the necklace. I applaud the teacher for at least attempting to get her to chew on a more appropriate sensory tool. Too bad it didn't work and the shirt is now in the garbage can, but that is not the teacher's fault. She obviously tried!

Jen is now sitting in front of the TV, after some rhythmic activities that I initiated, stark naked. Despite our rather warm weather this afternoon, she is wrapped in three heavy blankets, and chewing her way through GF pretzels, apples, and anything else that she can talk me out of. She is massively sensory-seeking and I am not looking forward to convincing her to put on some clothes in a little while to head out and feed horses. I can already tell that clothing will be a fight this afternoon. Thank heavens she doesn't strip at school! (Knock on wood.........!!!)

So............I'm sure there is some joke here to be made about edible underwear and my 5-year-old literally eating her shirt today. For the life of me..........the humor is eluding me at the moment. AAAAAAAAAAAHHHHHHHH!