Wednesday, September 30, 2009

Trying not to take it personal.....

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

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

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

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

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

Tuesday, September 29, 2009

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

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

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

3) Lastly, Dane has been informed that if he should happen to acquire any speeding tickets, he will no longer be driving an unnamed Ford Explorer, and will instead be riding a great big, yellow "Loser Cruiser" a.k.a. school bus.

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......... :)

Monday, September 28, 2009

Sixteen and lovin' it!


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

Saturday, September 26, 2009

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

Anyone that checks in here regularly already knows that my two boys are football obsessed. (Mike coaches with the high school team, so that really adds another football-obsessed "boy" in our house.) Anyway, Dane and Grant will play on a total of 7 different sports teams during this school year, but 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!

Thursday, September 24, 2009

Spreading the word about SPD

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

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

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

50 years!!

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

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

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

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

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

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

Monday, September 21, 2009

My officially-licensed teenage driver

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

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

Sunday, September 20, 2009

RE-shopping for school

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

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

So.........I got to re-shop for Jennica's school clothes this weekend with very specific goals. No buttons/frills on the fronts of any 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.

Friday, September 18, 2009

Wednesday, September 16, 2009

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

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

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

I got up this morning with a plan. That was probably my first mistake, but planning everything is a natural outcome to always trying to avoid "those scenes" with a special needs child. Seriously........I was admittedly probably a borderline "control freak" prior to Jennica and now I plan endlessly.

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.

Tuesday, September 15, 2009

Laughing out of frustration...

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

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

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

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

Sunday, September 13, 2009

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

Friday, September 11, 2009

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.

Tuesday, September 08, 2009

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!

Saturday, September 05, 2009

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! :)

Thursday, September 03, 2009

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......

Wednesday, September 02, 2009

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!