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.