Neuro-comedians??

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

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

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

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

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

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

A long, cool, drink of water...

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

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

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

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

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

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

Halloween........again.

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.......play.......more 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.

Undefeated!

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.)

So........to 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! :)

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!

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!

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. Really......trust 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 Linthorst........to 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.

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............."

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 wheelchairs.......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 says..........so 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.

So.........here'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!

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. Amusing.....in 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.

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 biased.......so 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.

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.

So.......today........I'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 killed.....er.......attempt 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.

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 thankful......hair grows back. Someday it might be a tatoo.

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.

So.......it 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 summer.....football......leaves........pumpkins......being 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. Now............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 decorations......it 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 that.....you 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 (yes......sew......in 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!

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 boys.......so 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!!!

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. :)

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. So.....today 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.

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.....

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.

So.........is 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......... :)

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"!!!

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 football.....football 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 team.......is 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!

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.

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!!!

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 shirts.........no 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.

It's five o'clock somewhere!

Happy Friday!

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.

Anyway......my 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.

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!

Shock in a small town

Lisa was a local realtor and we crossed paths frequently with various real estate transactions. Her youngest daughter, Olivia, showed dogs several years ago with Dane, and our families usually spent time together in the fall doing the 4-H dog thing at State Fair. She will be missed, and my heart goes out to her family.
http://www.dailyastorian.com/main.asp?SectionID=2&SubSectionID=398&ArticleID=64061

Holland

Over the past year or so, I have run across the story/parable that I have posted below countless times in a variety of places. It is a "mantra" of sorts with parents of special needs children, and makes a whole lot of sense to those of us that love our children dearly, but never imagined ourselves walking in these shoes. In any case, I applaud the author. She "nailed" it perfectly with "Welcome to Holland". If you've never seen it before........enjoy. If you have......read it again and take it to heart. -Beth


Welcome to Holland

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo. David. The gondolas in Venice. You may learn some handy phrases in Italian. Its all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland"."HOLLAND"?!?!? you say . "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in flight plans. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has Windmills and Holland has Tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never , ever ,ever, ever go away...because the loss of that dream is a very, very significant loss. But...if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things....about Holland.

Emily Perl Kingsley, 1987

Enough worrying already

I have barely worked this week. Well.......appraisal work anyway. I have appraisal work that needs to be done, but I have set it aside and made Jennica, and my sanity, the priority this week. Honestly.....I'm wondering if its back-fired on me. Without the distraction of being absorbed in appraisals, I've had time to let my brain run away with its worst fears. But then I have also realized that those fears, worries and anxieties are always there, and that I usually just shove them aside to focus on the immediate need of the moment by telling myself that I'll think about it "later." But "later" never comes and I fall into bed exhausted at the end of the day. So.......with my hands busy during the day this week, I have had my brain free to reflect on all the things that worry me.

1) I worry that Jennica is not truly improving, despite all the monumental efforts we're making. SPD is not like a common cold, where the symptoms disappear. It is more just an ever-changing landscape of tolerance. So..........I worry that Jennica hasn't improved as much as we have just catered her world around her to keep getting through each hour of each day.

2) I worry that the monumental efforts we are making for Jennica's SPD is taking away from the quality of time I have for my other three children. Especially Tiersten.

3) I worry that the financial burden of SPD, the sensory tools, the diet, the supplements, the medical bills, the therapy bills, the cost of driving to all these appointments, and the toll it all takes on my workload and earning power is going to "swamp the boat" at some point.

4) I worry that the decision to delay medication is not the right one. And then I worry that if we try medicating again, it will be as disastrous as the last time we tried it. But how do we not try something that might help her?

5) I worry that I have a closer relationship with our OT than I have with any friends right now.

6) I worry that one of these days I'm going to punch some higher-than-thou parent figure that tries to tell me that all children should be fully vaccinated and that dietary intervention is a crock, but then when I push them for why they have that opinion, they can't speak fluently about IgG food intolerances, thimerosol, aluminum, leaky gut, or anything else remotely related to the medical side of neuro-developmental disorders. And then they haul off and make some dumb remark about how they watched some segment on ABC News...........live the life and walk the walk 24/7/365 before you try to sell me some information you got from watching 15 minutes of TV!

7) I also worry that I'm going to scream at a school staff member one of these days when they tell me that they just don't understand why she's having a bad day, and then give me a whole list of things that have happened at school that could have easily sent her reeling and could have been avoided if they would only utilize the tools we've given them.

8) I worry that Jennica really needs to be home-schooled, and admit that this scares the heck out of me because I don't think I can meet her educational and social needs in a home-schooling environment. I also worry that if we were to home-school her, she would never become a functional adult. How do you build tolerance for sensory input by putting a child in an environment that meets their precise sensory needs? You don't!

9) I worry that there simply aren't enough hours in the day to grocery shop, prepare meals for my family, get everyone where they need to be wearing clean clothes, keep the house clean, help with homework, pay the bills, make the bank deposit, finish three appraisals, feed my horse, make Jennica's gluten-free lunches, do her vision therapy exercises, actually converse with my husband and children about their days AND not be grumpy and tired 100% of the time. I don't want my children to remember a mom that was always stressed out and at the end of her rope.

10) I worry that I can't keep Jennica safe. As she is getting older, her "comfort zone" is naturally expanding as she sees her peers getting more freedoms. However, many of her peers have triggers in their brains that tell them where to stop. I worry that I'm going to finally allow her to go to the concession stand at a football game with her sister, and she'll be 1/2 a mile away and happily talking to complete strangers before we catch up with her. Or worse. Much worse. (Never thought I would consider a GPS device for my child, but this child is changing my mind.)

11) I worry that everyone thinks I'm crazy and that Jennica just needs some "good discipline".

12) I worry that one of these days I'm going to start sobbing and not be able to stop.

Circle Time vs. Circus Time

For many children in early education, circle time is an enjoyable time to sit on the floor for stories, music, puppets, calendar, weather time, and a whole host of other activities. If you are a teacher in primary grades, you have probably been trained to put a fair amount of emphasis on circle time. Important things happen at circle time!!

As a parent of a child with SPD, I groan when I hear a teacher mention circle time. This area has long been one of Jennica's weaknesses, which is very typical to her type of disability. The close proximity of other bodies all seated so close on the rug, the visual input of the constant small movements around her, the auditory input of the teacher and the rustle of wiggling kids, and the rules.......keep your hands in your lap, raise your hand, listen, eyes forward...........UGH!

We have tried a bazillion different sensory tools to get Jennica through circle time--all with mixed success. Active seating disks, which allow her to "wiggle" without disturbing her neighbors, work intermittently. When they work.........they work. When they don't......they are great objects for testing aerodynamics. (There's nothing quite like a green core disk flying across the room in the middle of circle time to get the teacher's attention.....which has now accomplished two goals! Aerodynamics AND attention!) We have used chewy tools to occupy her mouth, we've tried weighted snakes (these also had good aerodynamics), we've tried a variety of fidgets........we've even tried just flat-out good old discipline. (Sit there! Or else!) Nothing has worked with any consistency.

So, with the first week of kindergarten behind us and scrambling to get the kinks ironed out, this weekend I asked for some online advice from other parents of SPD kids. The response I got seemed pretty ordinary at first, and almost disappointing. The first line read something like, "Maybe she's not ready........" That's it? That's all you've got for me?

But that line has nagged me over and over and over in the past day. "Maybe she's not ready." For a parent that has approached Sensory Processing Disorder with the assumption that, with enough treatment, we CAN make our daughter "typical", that is a really difficult statement for me to absorb and accept. But it has nagged at me. And I have stepped back and taken a hard look at the situation, and realized that the response, although not what I wanted to hear, is probably right on. That doesn't mean that we don't continue to try to increase Jen's tolerance of circle time, but rather than looking for the "magic tool" that is going to make it all better, maybe we just need to keep putting her back in that environment in doses that she can handle, and give her sensory system the time it needs to mature. She is making HUGE strides. Why have we decided that she has to do this now?

So.......I've had a great reminder from a fellow SPD parent that we need to keep our eye on the ball. Is sitting all the way through circle time each and every day really that important at this point in time? She'll do it when she's ready. Or.......she'll outgrow circle time around 3rd grade anyway. Either way.......is it worth stressing over? She is participating with the class! She is learning!

15 Boys & No Ambulance Rides=SUCCESS!

Our first home football game was last night. Considering the obstacles that were against us, I'm considering it a phenomenal success. Here's the deal......1) We had a total of 15 eligible players that could play last night, 2) We have a brand-new coach that has brought in an entirely new system of play. Our boys have even had to learn to do warm-ups differently and huddle differently now! They have had a LOT to learn in a relatively short period of time, 3) We had a sum total of 2 seniors last night, 4 juniors, 1 sophomore (Dane), and the other 8 that were eligible were freshmen in their very first game of high school-level play! (If you don't think that sounds bad, come on over and have Dane do a little tackling practice with you. Dane only weighs about 165 and I "dared him" to tackle me one night. NEVER again......Trust me on this!) 4).................oh to heck with it...........you get the idea.

We didn't win the game, but I don't care. The boys looked GOOD last night. They made some errors. They even might have made a lot of errors! I don't care. They communicated, they worked together as a team, they executed a lot of stuff. The ball got thrown and handed off and guys in uniforms ran the right direction. That, in itself, is a huge improvement over some past events. And............its a MOM thing..........nobody left the game in an ambulance!!!!

As for Dane............well...........he's a little tired today. :) He played EVERY play of the game except two. He ran out of the game at one point, ripped off his helmet, took two big swigs of water, and ran back in. He played both offense and defense and LOVED every minute of it. I think he's a little OCD about football.......but he thinks I'm a little OCD about horses, so we're even. :) He wasn't the team star but, quite honestly, nobody really fits that bill this year. They are a TEAM. Everyone sweats........everyone contributes...........everyone will win and lose TOGETHER.

Even the attitude in the stands was different last night. There was optimism, hope, and a generally positive mood in the air. Our new principal was there sporting the red-and-black, and he was clearly visible and had a SMILE on his face. Somebody said that Raymond enrolled 46 new kids for this school year? Not sure if thats correct.........but WOW!!! Thats a LOT for this little town.

The team has survived their first week. Each week now, they will gain more players, as those who were ineligible meet whatever criteria they were lacking and are able to take the field. And the 15 that played last night have experienced the first-night jitters, and felt the new offensive and defensive game plans "live" against a "real opponent," which is rather akin to the difference between learning to drive on a lightly-traveled country road vs. driving Interstate 5 at rush hour for the first time. The team will look better and better each week and, while I know they were disappointed with the score on the board, I could see some pride at the end last night. They're beginning to believe in themselves!!! Isn't that what its all about, after all?

Ever so grateful!

Realizing that I was raging wildly in my last post about our school district and the fact that they had "ignored" our warnings as to where Jennica was headed in Kindergarten (self-implosion), I just want to clarify that, "No, I am not schizophrenic!" I promise. But with that said, this post is going to be a huge about-face from my last post.

I LOVE OUR SCHOOL DISTRICT!!!!! I'm shouting it from the rooftops! I LOVE OUR SCHOOL DISTRICT!!!

First of all, if you are not the parent of a special needs child or work closely in the field of special needs children, you need to understand that when special-needs parents talk, conversation is almost always negative-negative-negative about school districts. You hear a lot of-- "Our school won't give us this support or that support." and, "I have to spend a TON of time at the school nagging to make sure that this or that is actually being done for my child." and, "I hate IEP meetings." and............a lot worse. Special needs parents generally have a lot of pent-up anger and frustration towards their school district. For this exact reason, a good percentage of special needs children (especially those with ongoing dietary and bio-medical interventions) choose to home school. In my opinion, there are parents that do a great job of home-schooling, and there are parents that don't do a good job of home-schooling. There are children that do well in that situation, and there are children that don't. In our case, I am adamant (at this point anyway), that Jennica's SPD would worsen if she were in a home-schooling environment. Maybe I'll focus a post on that another day, but for now, she NEEDS to be in the exact environment that stresses her, but WITH the supports that will allow her to slowly develop the coping mechanisms she will need to be a fully-functioning member of society.

In my last post, I was pretty ticked. I thought we had done a pretty good job of "warning" them about where we were headed, and I was beyond-annoyed that my daughter had to put herself into a safety-risk situation to get their attention. However, in their defense, even professionals that specialize in SPD refer to it as "the invisible disability," so..............I'm going to acknowledge that it is hard, from a school standpoint, to look at a child that is in non-sensory-meltdown-mode, obviously fully capable of excellent speech and communication skills, obviously walking/talking/running/jumping/playing/learning just like the other kids, and be able to mentally justify the expenditure that the parent is telling you is necessary. I'm stepping back, being objective for a moment, and once again admitting that we must look like the nutty parents some days. "So.........tell me again..........exactly WHAT is wrong with your child? She looks pretty darn normal to me!!"

Now, here's where I get to the cool part. In the 5 hours that followed the end of the school day on Thursday, our school district came over to our side. They took several needed steps, and without the hand-wringing and time-consuming hmming and haaaaing about where the funding was going to come from, ya da ya da ya da. Jennica spent Friday with a 1:1 paraeducator. No time wasted there. It was needed to ensure her safety...........so it was done. Period. And it bought a little time to get everyone sat down and determine a course of action.

So.......we met with the principal, our kindergarten teacher, and our school psych yesterday. First, we were told in no uncertain words that our child WILL have better supervision from this day forward. Period. Second, they had already identified several specific portions of the day that seem to be causing her some obvious stress due to the level of sensory input (our cafeteria, for starters, is an acoustic nightmare. Even I hate our cafeteria and I only go in there on rare occasions to make a deposit to our kid's lunch accounts. The person that put those squeakly stools in there should be shot!) and they wanted our input on how to best find some solutions. They already had some ideas, but wanted verification that we were okay with their solution and that it could be put in place by the time she returns to school next week. They are going to have to juggle a staff lunch period to pull it off, and they just wanted time to notify staff. We're good to go. Third, they are ordering some specialty items for Jen regarding keeping her from wandering too far again, and wanted to make sure we were okay with that. Again, we're good to go. Fourth, they wanted to start the process to make some PERMANENT changes for Jennica, and get her some better support on the longer-term. There is a federally-mandated process to put the wheels in motion, and they wanted to get the clock started so that no more time is wasted.

And, keep in mind, this was a meeting after school hours on a Friday afternoon. Not once during this meeting, did I feel like our principal was annoyed or irritated to be there. Not once did I feel like our parental input was not valued or taken seriously. And not once did I feel like our daughter's needs were not being given utmost priority. They were gracious..........they were compassionate......and they were genuinely engaged in finding solutions. We're going to have an IEP and a paraeducator in place in a very timely manner. And its going to address Jennica's true needs. Not just be some piece of mumbo-jumbo that they're required to complete. And they openly acknowledged that Mike and I are both intelligent adults and it has literally taken us almost a year of intensive work with an OT specialist to develop the level of understanding we have of Jennica's specific brand of SPD--which is going to make training a paraeducator for this specific child's needs a challenge. Its going to be a crucial factor that we not have to re-train a new para on a weekly or monthly basis, and that the para is truly engaged in being with this child. Some paras do great with physical disabilities that require wheelchairs and sign language......some not so much. We need someone that is ready to be mentally-challenged by a very smart child with an invisible, but very REAL, disability. Someone that is willing to constantly be looking for the reason behind the behaviors......

I LOVE OUR SCHOOL DISTRICT!!! I wish that we could avoided this whole thing without the safety risk, but I have to give them credit--they have responded valiantly. I think we're all on the same train and headed in the right direction now! :)

We told you so!!

Note added later by "the Mom": This was written in a foul mood of hopelessness. It has a happy ending. Read the subsequent follow-up post above for some good news, and a greatly-improved outlook. :)

This morning actually went very well. Jennica rode the bus......all was good. Until the phone rang right after school.

It would seem that our little dear took matters into her own hands today and........er........left. As in.......see ya, I'm outta here, good-bye.......walked off the playground and left the school grounds. I'm a little sketchy on the details, so I don't know how far she got or who found her and took her back. She's alive......she's in one piece.......I'll find out the details later. The principal also found her wandering the hallway no less than three times today. I'm not sure if this was pre-playground-escape or post-playground-escape. But she was clearly either looking to escape. Or escape again.


So......I'm a bit torn here. Obviously, I'm concerned about the safety of my daughter. If she were missing at this very moment, I would be frantic and.........oh.........so many other emotions. But she's not. She arrived back at our door on the school bus and is eating her snack as happy as a clam. Since my emotions are not entangled with fear and worry, I'm partially ticked and partially gloating. The ticked off part.........you can understand that. How in the heck did a kindergartener in an orange shirt escape the fenced playground? Are you kidding me? And how did she repeatedly escape the classroom with a heavy door, a teacher, a full-time paraeducator, and 23 other kids not noticing? But okay......let's move beyond that part. She has escaped on me a time or two, so I will give them the benefit of the doubt.


Now.......the gloating. We told the school last Spring that kindergarten was going to be a problem. Larger class-size + longer day = High probability that a kid with SPD is going to implode. Its not a possibility, it is a fact. We went back to Mary Bridge for the exclusive purpose of coming away with documentation from a neurologist that would validate the need for this child to have an IEP and a 1:1 or 1:2 paraeducator. We accomplished that! We have that documentation! We have a long history with this child and this school district. They have already had her in preschool for two years! For heaven's sakes, the OT assistant and the kindergarten teacher have attended an SPD conference with us and the kindergarten teacher went with us to an OT appointment in Olympia in August!!!

We have continued to re-iterate to the school staff that this child NEEDS to be on an IEP, and NEEDS a para-educator. They have continued to remind us that she has no cognitive delays, and that she won't qualify for an IEP or a para. We have tried to tell them that we understand Wrightslaw and know that there are other issues aside from cognitive delays that will warrant a qualification. But we were told to wait. "Let's see how she does." "Let's give it a month and we'll talk at the end of September if she's struggling." "She'll be fine!"

So...........This is Day 2, and my 5-year-old by-passed all of your security measures and got off campus. She repeatedly left the classroom on her own without the teacher even noticing, and she's refusing to participate in ANY classroom activities.




So......Almighty-School-District........How's this working for you? Wish you had that IEP that warranted the 1:1 or 1:2 paraeducator? WE TOLD YOU SO!!!!!!





Breathe in.......breathe out.........breathe in........breathe out..........I must be calm. I must be calm. I must be calm. IDIOTS!!! I sure hope I can laugh about this someday......

Manipulated by a 5-year-old.....and on the first day of school!

Okay.........I got drug through the mud this morning. By a very smart little girl. And on the first flippin' day of school. It was a very humbling experience, and I'm going to spend today taking some steps to ensure that it doesn't happen again tomorrow. UGH! Here's the story:

I have spent the last week making detailed preparations for Jennica to start kindergarten. (In actuality, this process started last Spring with the selection of her teacher, communication with the school, etc. Her kindergarten teacher even attended a 2-day class with us in May on SPD, and attended an OT session with us over the summer to enhance her already-strong understanding of the specific areas that Jen needs the strongest support. Bless her heart! We love our kindergarten teacher!!) I have baked diet-specific cupcakes to keep in the school's freezer so Jennica has "goodies" for birthday parties, I have provided the first two weeks of daily snacks that meet Jen's diet specifics and made arrangements to refill the snack basket on a regular basis, I took an emergency lunch to the school to keep in the freezer in case Jen should forget her backpack on the bus one day or some other unforeseen disaster regarding her lunch, I have provided the teacher with an "instruction manual" for aides and substitute teachers as needed, I have provided finger fidgets/wiggly seats/chewelry and all the other gadgets that help kids with SPD be successful in the classroom, I have visited the classroom with Jen to make sure she knew what to expect to ease the anxiety of the unknown.......ya da ya da ya da. I tell ya.......I was PREPARED. Or so I thought.

Jen got out of bed this morning on what, at first, appeared to be a very low engine. Slug-like, in fact. In actuality, I think she was very anxious and thought procrastinating was a good option. But, in any case, she ate breakfast at the speed of a snail. She refused to take her supplements. At all. She dilly-dallied, and then dilly-dallied some more. I tried to control my inner panic, keep my voice level, and work through it. I reminded her how excited she was to ride the bus, how much she loves her bus driver (which she does), and told her that she needed to eat and take her supplements so she could go get dressed and be ready when the bus came. It didn't help. At all. I tried a behavioral technique that has had GREAT success for us over the summer that puts her in charge of the choices and consequences. She decided to deal with the negative consequences rather than get motivated--which is exactly how it is NOT supposed to work.

So........the bus left with the older three kids. And Jen continued to fiddle. I switched to the visual schedule drawn on her white board, which we honestly haven't had to use much in the last couple of months. That helped get her breakfast finished and her supplements down, sloooooooowly. And then Round 2 started when she had to go brush her teeth. She told me lengthy stories about a movie she wants, told me things about our cat, and jabbered incessantly about a million other things. And still didn't brush her teeth. At my wit's end, I left her alone in the bathroom and told her to come out when her teeth were brushed. So then she cried. Great big huge sobs. And I sat on the couch in the living room and listened to her sobbing, put on my "OT hat", and tried to make sense of what was happening. I quickly came to the conclusion that you can't make a child with SPD comply by raising their anxiety level. So.......I went back to the bathroom, sat down on the floor with her, told her that I wanted her to have a great first day of Kindergarten, and asked her how I could help her do that. She told me that I "needed to be nice to her." I bit my tongue. Hard. I kept my voice very level, and somehow managed not to tell her to take that comment and shove it. After all, she doesn't get that I have spent the last week trying to get ready for this great event and preparing every detail. She doesn't realize how carefully her day was planned yesterday to spend the day at the beach, which is a sensory playground, how carefully her bedtime was planned to maximize her restfulness, and on and on and on. Ungrateful little..........beautiful daughter. :)

Somehow, we managed to get her teeth brushed. Together, we got her dressed. Eventually. After a change of outfit due to the fact that she griped because she didn't have a "pretty shirt covered with flowers" like Tiersten had worn today. (That is actually progress. Most days last year, she wouldn't have cared if she had worn a clown costume to preschool. She is becoming more aware of her own appearance, which is a very necessary life skill.)

And then I drove her to school, while listening to her extremely annoying CD in the car, which really DOES help organize her brain. Makes me crazy........but hey........at this point, I would have listened to 10 hours of Lawrence Welk if I could get her to school in a happy mood. Amazingly enough, we arrived before class started. She was clingy and resistant to me leaving, which is exactly why I wanted her to ride the bus, but I left and she was successfully sitting at circle with her classmates.

So..........I guess I accomplished what was needed for the morning. All four kids made it to school. But nowhere near the way I WANTED to accomplish it. I had big plans to take pictures of them at the bus stop, and be at my desk by 8:00. I wanted to be able to congratulate myself on what a healthy breakfast they had and feel good about the day ahead. Instead.......I'm going to spend part of the day making a picture schedule for tomorrow morning, so that I am more prepared to provide visual support. And I'm going to attempt to get my blood pressure back down and stop gritting my teeth. And I'm going to try not to feel guilty that there were Moms of other first-graders at the school with cameras lovingly hugging their first-graders and kissing them goodbye.....while Tiersten got pushed out the door to the school bus with a brief "have a great day," as I cajoled her sister into stepping up the pace. (The boys were actually laughing when I last looked at their faces. They know what it takes to remain calm when Jen decides to "buck the system".)

And I am humbled at how quickly the best-laid plans can go awry. Sensory Processing Disorder will not win! Tomorrow morning is a new day! Stay tuned!