Saturday, November 29, 2008
Thanksgiving was a lush, fragrant, delicious, slightly tight waist-bandy sort of day. Many thanks to my excellent GGF for once again inviting my whole brood to her house for the day.
The day after Thanksgiving is the traditional Gingerbread making event at my mom's. Her place sports this iconic view of beautiful Seattle and is the quintessential "party house". Some considerable time was spent trying to remember just how many years we have been doing this. Definitely more than 15 was the conclusion; we couldn't pin it down closer than that.
My mom invites a literal horde of folks with their kids to her house for the day. Dazzled by the piles of every kind of candy imaginable and buckets of different colored frostings, most people just need a little time to just take it all in but eventually serious work begins. My mom made 15 separate Gingerbread house this year; simple cottages and sprawling Victorian Mansions. For the slightly overwhelmed there are all sorts of sugar cookies to decorate; elaborate or plain, they are eaten all the same.
Some people really get into it and a design competition could break out each year; usually with Grampa John or stepbrother David winning hands down. But all the results are truly incredible and each person is encouraged to take their house home. I myself don't tackle a whole house but usually spend my creative energy on frosting and decorating piles and piles of cookies.
My addition to the tradition is to get a big pot of soup cooking on the stove. It is fun to cook as a group, take turns stirring through out the day and then it warms us all at dinner time. Of course, the kids didn't eat much being sugar buzzed from frosting overload. But, all in all it is a lovely day; spent with friends new and old, beloved family members watching the kids creating fun memories.
My kids usually stay the night with plans of putting up the tree with my mom the next day. All went as planned without too much mishap this year. I am always impressed with my mom's energy and good graces to host a big event like that with absolutely no eye ball rolling or griping about the mess. She really is a saint. John too.
Thanks mom, for starting these fun traditions and keeping them up. I guess that is what its all about and because of you we are banking so many wonderful memories to savor through out the year and beyond.
Wednesday, November 26, 2008
I am so thankful for the extra large helping of health, happiness and the terrific people in my life. Special thanks goes to all the wonderful friends and family. Life just wouldn't be what it is without you all!
Here is hoping you will have a warm, wonderful, tasty, tranquil, relaxing, humorous Thanksgiving with your friends and family.
Tuesday, November 25, 2008
We were in West Seattle when we found out that our kid wasn't necessarily assured a place at the neighborhood school and may very well be bussed across town for Kindergarten. Alarm bells went off for both of us; perhaps explaining the exodus to Vashon Island by the time Molly was 2 and Shea was just a wish and a prayer. We chose Vashon for the excellent public schools; often times described as "quasi-private".
Now that I have been at this a while, I realize that public schools although legally supposed to serve all children, don't always. How can they when education funding has been cut left and right? It's abysmal really and pains me to acknowledge this.
I met a woman recently who had a son who is on the autistic spectrum and was dealing with many of the same food allergies that Shea is facing. We chatted gluten-free products and recipes and then jumped into the fray.
"How is it going at school?" I asked. She got a pinched, frustrated look on her face and replied, "Not well. They were very concerned with wanting him to just hang up his coat then sit down and shut up. He couldn't draw or cut paper the way he wanted to. It was very frustrating."
"Was?" I think. She told me they decided to pull him from the public school system and do home schooling which so far had been working fine for them. I asked about her 2nd child, a typically developing girl, "No, we won't send her to public school either."
This exchange has really stuck with me. First, no matter how you feel about public education, you make educational choices individually for each kid. If one thing is not working, you try something else. But, I was sad. One bad experience with an overwhelmed Kindergarten teacher chased this family away from our public school. Sometimes that's all it takes.
I see it as the bell curve. The majority of the kids get served pretty well, although that is always debatable. The kids that happen to be on the edges? Not so much. If your kid is on the edges, that can be a very frustrating place to be.
It reminds me of this trend to create "gifted programs" or "accelerated learning" in elementary schools. It seems parents just love hanging this sort of tag on their kid. We went through a period here, where there was a lot of pressure to start tracking and testing as early as Pre-K! We already had testing at 3rd grade to divvy the kids up for math in 4th & 5th grades but now they were pushing for more! The whole shebang! Let's test their little personalities right out the door and label them at 6!
Needless to say, I was really, really, REALLY against it. This is a big topic but in a nutshell; testing is not and shouldn't be the prime designation on determining a child's skills and attributes. Can't we let the kids just be kids for a while instead of shuttling them off into a category? "Here Johnny, you belong in the smart class! Bobby you belong in the below average class!" Does anyone else see the self fulfilling prophesies this much be creating? Not to mention the self-inflicted stresses labeling can cause.
I remember one of the arguments to pursue a gifted program was to give the smart kids appropriate work to do. By all means, go for it. Teach to the highest skills in the class and watch some of the others come up too. Create more opportunities for individualized instruction so that each kid can reach as far as they can. Give the teachers more professional development so they can recognize and work with a child who is gifted. All of the above probably just equate to more money needed; lower class sizes and more investment in our teacher's training. Don't hold your breath.
Maybe the new administration will take a long, sober look at No Child Left Behind and see if there is anything salvageable there. We can only hope.
Molly's key, she told the class, was to open up her brother's power of speech. She told a little about how talking was very hard for him and that we were all working very hard to help him.
Well, I can't even write this story without tearing up again. And, it's been over a year!
First, I think it is testament to the kind of kid Molly is; compassionate, empathetic and thoughtful. But I also think it is very illustrative to how siblings of specials kids commonly feel. They, somehow, want to make it better for so many reasons; to help their parents, to help their sibling and to make it easier on themselves. Let's me honest, a lot lands in the laps of these kids.
I recently heard about a program called Sibshops.
"Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in-between. They reflect a belief that brothers and sisters have much to offer one another — if they are given a chance. Sibshops are a spirited mix of new games (designed to be unique, off-beat, and appealing to a wide ability range), new friends, and discussion activities. The Sibshop curriculum is used throughout the United States, Canada, England, Ireland, Iceland, Japan, New Zealand, Guatemala, Mexico, and Argentina."
For a long time I have been feeling that Molly could use something like this. I don't want to make a big deal about it but I think it would be a fun environment to share some feelings and thoughts about having a brother with special needs. And, now that I am writing this, I think I am going to look for some activities nearby.
Monday, November 24, 2008
How timely! I had never been to a Unitarian function before being prone to extra laziness on Sunday mornings but it was really nice gathering.
First, poor Pam had an unforeseen emergency and couldn't make it until basically the end. But, she was good enough to chat off-line with some parents and promise a rain check in January.
Instead of hearing from Pam, what we did get to do is have a wide, multi-generational discussion on bullying and parenting in general. I found it particularly touching to hear what folks in their 70's and 80's thought about the "kids these days". It was very insightful to hear some of the stories and suggestions but I mostly found that the grandparents were indeed just as confounded on how to help with bullying as they were when they were parents.
It is a big topic and we managed to whip through an hour and a half very quickly. I could tell there were some folks who had heard a lot of these stories before but to me it was novel. I should note that my parents are quite young and I did not really have a connection with either set of grandparents when young or as an adult so I found the stories very sweet and endearing.
One young parent brought up the fact that in her previous school district the bullying policy was literally in every classroom. That no one had any questions about what it was and if something went down the administration was on it quickly. That is not what is happening here.
The theory of "islandism" was brought up where everyone thinks everything is so darn wonderful and perfect that no one voices the ugly stuff. That folks then just say, "Oh that's just kids being kids."
It is true that the Bullying Policy should be easier to find and more readily available. I looked all through the school district website last week but never could find it. I had to e-mail a counselor who forwarded my request to the administration. Some one did call me personally which I thought was good but the policy should be easy not hard to find. She directed me to the Student Handbook where the bullying policy was buried at about page 20. Sigh....
See what I mean? The policy is only as good as the awareness and enforcement. I think I will push the school district to host a meeting for parents, teachers and staff with Pam next Spring. Judging by what the other parents had to say, the bullying issue is up front and center on many people's minds.
More updates to come on my latest windmill tilting.
For me, all of the above. I didn't really know what it was going to be like when I began my blog and I was mighty nervous when I first hit that "Publish Post" button. Since then, it has gotten easier, faster, more cathartic than I even thought it would.
But, let's remember, this is SELF publishing, stream of consciousness to the Nth degree. These posts never get run through an editors sieve and have the choppy intellectual jumps of a journal. This blog is a tribute to self absorbed focus; all about me and mine. One doesn't apologize for this, it just is that way.
I write about what is bothering me or what makes me happy. I write about stuff that strikes me as odd or just rattles around in my head for too long and needs to get out. I write about sad, scary feelings that are hard to express even to my GGF. And, I write about victory and triumph. In a word, it's a mixed bag and not always pretty.
Do I sometimes go too far with my opinion? Definately. Do I sometimes beat it to death? Perhaps. Do I take too much of my life and smear it liberally in my blog? I am afraid so.
I have always been a passionate, opinionated person. Old habits die hard. And, part of the attraction of blogging is the assumed anonymity. Sure, friends and family read my blog, bless their hearts. I expect they are the majority of the hit count. But I like to think about the people I will never know or meet who stumble upon my blog and stay to read a bit.
If I have offended or ticked off anyone, near or far, with my over the top rhetoric, I apologize. I am not always politically correct. For this I appreciate your understanding. But, I promise that I will always be real.
Sunday, November 23, 2008
You know, normal kid stuff.
In the past, if he even tried using his words, I tended to honor the request just to support the attempt. But, like any kid, Shea will say "cookie" all day if allowed. So, to keep it all in check we need to re-evaluate periodically.
Last week he got into a little scuffle at school. I asked him what happened, he said in that stilted, deliberate way of his, "Hit him." Oh boy! A+ for honesty but a D- for hitting.
"Hitting is never ok, Shea." I predictably repeat, way too many times. I worry if his frustration level is rising or things just got out of hand this one time. Without being a fly on the wall, it is really hard to know.
Up until recently, he has always been such an even tempered kid. I remember starting with Bubble Lady when he was three and there was not a hint of the contrary kid. I pointed this out to her but in her wisdom she predicted that it would probably appear...eventually. Of course she was right. With a vengeance.
Shea won't throw full scale tantrums usually but will be contrary just for the sake of contrariness. Or as they say, oppositional behavior. This plays out about 400 times a day with his sister. I hear he is a little better behaved with other kids at school, thankfully.
I expect this is just normal kid stuff and he will work through it eventually. But, I am aware that Shea is on his own schedule and may need to be reminded again and again about certain social lessons.
No hitting is a real big one.
The new Disney movie was a predictably tour-de-force adventure with consistently top wrung voice talent and Bolt was no disappointment.
The story was about a dog who plays an adventure hero on television with a kid spy. He doesn't realize that the adventures are just pretend since the truth has been kept from him intentionally. He has a rude awakening, makes some friends and has a wowzer of a cross country trip to get back to his beloved "person". Hilarity ensued.
For me, my favorite character was the hamster living his life in a Lucite ball watching way too much TV. And, the pigeons; all of them were just incredible.
One disturbing side story was the mother of the child star who was continually ignored and disregarded by the selfish and greedy agent. Reminding me of my severe skepticism for parents who push their children in that arena. At the end, the mother pays him back with a satisfying "We quit!" and kicks him out.
I thought it was a pretty solid lesson on how empty, lonely and weird growing up as a child star must be. Then come to find out, the voice for the child star was no other than Miley Cyrus aka Hannah Montana. Speaking of pimping your kid to Hollywood. The irony was not lost.
Basically, it was a fun movie. Molly really liked it but it was a little much for Shea. I would rent it again but not sure if I'd buy it.
Saturday, November 22, 2008
I don't mean just the standard PTSA stuff which I have to say can be a bit limited in scope, personalities and function. But, instead I mean individual parental involvement like volunteering to help in the classroom, supporting a teacher with whatever they need, going with the class on a field trip or bringing a batch or two of muffins for a class party. There is a lot of that here and, frankly, the bar is set pretty high and it can be intimidating at first.
I try to help out in Molly's math class every week and last week the teacher was scurrying around looking for stuff for me to do. I assured him that I was here really to watch the kids. Oh, I would be happy to make copies, correct quizzes, whatever he needed. but I was really there to see the social dynamics up close and personal. He seemed relieved and just left me to settle in to watch the lesson and the dynamics unfold.
Taking note of the social dynamics is a big part of being involved. Knowing who your kid is talking about during particularly rocky or happy points throughout the year always makes me feel a little closer to my kid's experience and therefore she includes me more. Right now in 5th grade, I expect that isn't particularly novel but as we move through adolescence I will be glad I knew more than just the bare minimum about the kids that she sees everyday.
On the cusp of middle school, I hear from some parents that friendships become more important during those years. That success and happiness in middle school depends on the friends or "groups" the kid has and identifies with. Looking back at my own experience, I expect that could be true. I know one parent who is extremely focused on popularity; wanting her kids to be popular, wanting them to hang out with the popular kids and strangely over-focused on who those popular kids are. Honestly, I am left scratching my head. Is this a good example of arrested development? Or perhaps over-compensating for feelings of inadequacy in herself? Imagine being able to point out the most popular girl in your kid's grade!
I would sure hope after all these years, we could all agree that popularity in school doesn't necessarily have much to do with how life turns out. In fact, I would think that being a star in middle or high school can deter the personal growth needed to be successful after high school. I don't know, I suppose there are plenty of theories but I can honestly say that I couldn't care less if my kid is considered a "popular" kid or not because I realize how fleeting, shallow and not very representative those terms can be. Sure, I want them to be happy and have good friends especially during those critical years but to be popular at all costs? Hardly.
Let's keep our feet on the ground, our natural parental pride in bounds and keep our eyes on the prize; a happy healthy productive life for our kids.
Thursday, November 20, 2008
I am not yet dealing with this issue with Shea but it sure is popping up for my 5th grader. These days its all the rage for schools to have "Bullying Policies". Which is good, I guess, but doesn't really matter unless the policy is enforced.
No one likes their kid to be on the receiving end of bullying. That's for sure but what does it feel like for your kid to be a bully? I have been thinking about that a lot these days. What would I do if my kid was the one that was leading the "mean" girl pack? Honestly, I would be horrified.
I was on the receiving end of plenty of bullying back in the pre-PC days when I was a kid. No warm and fuzzy "Bullying Policies" back then; we were on our own. I remember an older girl putting gum in my hair on the bus ride home then mocking me in front of everyone the next day when I had cut a big chunk of my hair out to get rid of it. Oh ya, you don't forget that. There was plenty more through the years and I expect we all have these awful little tales to tell.
How do we survive it? How do we shake it off? How do we rise above it? I remember, vividly, my mother saying, "It's them, honey, not you." and "It's their loss." I found solace with the repetition and find myself saying the same thing to Molly now. After all, it's all character building, right?
Is my kid a bully? I think we all need to periodically ask ourselves this question and try to take an objective look. I know it's hard to be objective about our kids but I doubt if we are doing them any favors by ignoring an uncomfortable truth.
What about my kid's friends? Are any of them bullys? I think there is definitely a "Lord of the flies" mentality among our kids. They know who is the bully and who insists on being Alpha at all costs. It would make sense that some would consciously decide to become part of the pack, the posse, the mob. Is it understandable that some kids would rather side with the bully rather than be targeted themselves? Heck yes, it's understandable. Dreadful and dangerous but, yes, understandable.
Bringing it back to Shea; one of my big worries is bullying and teasing; about how he talks or doesn't talk, about still wearing diapers, about being different. Because let's be honest, childhood is all about normalcy, especially for special kids. Sure, to us, the parents, all our children are wonderful, special gifts. But, to them its survival mode.
Thankfully, I have a couple more years before it starts in earnest for Shea. By that time, I will have hopefully made it through with Molly.
Bubble lady told me that blended sounds would be the next big push that we would be working on with Shea. She said that will go along way to help with articulation and to help other people understand what he is saying. Sounds good.
It's weird how our family can all understand what he is saying. Even though it is quite rough. We just know. I often need to translate for him even with his specialists. If I am having a hard time understanding what he is saying he will get frustrated, sometimes really frustrated. But, he will usually try again, sometimes clearer or with another clue to help me figure it out.
I am glad he now makes the extra effort and I always make a big deal with praise and pats on the back of these attempts. But I am reminded how much I am missing of what he thinks and feels because he can't speak easily. I just hope one day down the road he will be able to tell me how he is feeling in full throated description and detail. I can't imagine it but I still hope.
Tuesday, November 18, 2008
Today I heard that one of my clients, Will Anderson has died. He was only 53 and had finally succumbed to a long battle with cancer. He leaves a big hole.
My thoughts and wishes go out to his family. He was a warm, generous, unique and dynamic person and he will be greatly missed.
Although I had only known him for 4 or so years, he was much loved by many here on the island. He didn't tell me that he was sick until quite recently when he confided that he was recovering from Stem Cell therapy.
He wasn't one to dwell on the negative and really seemed to take life by the horns.
Last year, he told me he would be gone for a month or so, he was going to Thailand to help with some rescued elephants with an old circus friend. Wow! I just couldn't let that go and asked him to send me a few pictures that I could share with my kids. These are them.
RIP Will. You were a true gentleman and I will miss you.
I think Vashon Island is special enough to get a post all it's own.
Located 15 minutes by ferry south of Seattle, WA and 10 minutes north of Tacoma gives it a unique rural yet next to the city sort of feel. There is no bridge so we are completely dependent on the ferry system.
It is about the size of Manhattan island or 20 miles north to south and 5 miles east to west. There are 11,000 people who live here year round while summer swells the population to 15,000. About 5,000 commute off island to work each day.
There is a little town proper with one 4 way stop, shops, restaurants and a big wonderful grocery store. There is a little old fashioned movie theater. There is a clinic that is affiliated with Highline Medical Center and plenty of other doctor's including alternative practices. There a many artists, musicians and writers who live here. And, many folks who just support the arts or live artfully.
There is a public school district that offers one high school (9-12), one middle school (6-8) and one elementary school. There is a well attended private school (4 - 8) and plenty of pre-schools, day cares and little private primary schools.
Vashon is a kid friendly place. I consider it a nesting place. In fact, it was after Molly was born when we lived in West Seattle that we really started to think about and looking for property on Vashon Island. I guess it was something about all those sidewalks and Molly's sweet little knees. I wanted to see her run across an expanse of grass.
Jake being from the East Coast originally, took one look at a rural island smack dab in the middle of Seattle and Tacoma and said, "Gold mine! Sign me up!"
We actively looked for 2 years then found our little piece of paradise; a 5 acre 1908 fixer upper farm house. Oh boy, and was it a fixer upper! Complete with gaping hole in the roof with a not very decorative blue tarp. Well, that was 8 years ago and that story may have to be another post.
The first thing I noticed when I moved to the island was the air; it smelled different, like it had more oxygen in it due to all the trees. My mantra at the time was , "More trees than cars!"
I have gotten used to the air but I am still surprised and charmed by our bucolic little island. It is indeed a wonderful place to raise kids. It reminds me of something Tasha Tudor, acclaimed artist, naturalist, simple living proponent, "Give your children good and happy memories of their childhood."
That is exactly what we are hoping we're doing.
So, come visit Vashon. It's a magic place.
Monday, November 17, 2008
I went to Bastyr Clinic and they suggested I start with a morning smoothie. It really, really helped immediately and I have been having it every morning since. Something with the blackberries really helps with balancing stomach acid I was told as Bastyr.
I love it because you can customize it quite easily. So, welcome to my morning ritual. In my house it's call Mommy's Kefir and I don't really feel quite right without it. Here is how I do it but feel free to personalize it for you and yours.
In blender combine:
2 cups non-citrus juice (apple, grape, carrot or blueberry)
Big dollop or about 1 cup of plain yogurt with active cultures (like Nancy's)
12 brick of soft tofu, I use Mori-Nu
hand full of frozen blackberries or boysenberries
2 tablespoon Psyllium (pure dietary fiber)
1 tsp. Nordic Naturals fish oil (Omega 3 & 6) Nordic Naturals
Blend until smooth. Makes enough for large breakfast portion with a little more for a light lunch or snack. Warning: if you use the Psyllium it will get very thick the longer it sits.
Incidentally, I was able to manage the reflux with diet alone and rarely have any heart burn problem anymore.
Also, as an added bonus, I like to think it is mellowing my pre-menopausal symptoms probably due to all the natural estrogen I am getting with the tofu. I don't really know if that is true but if I miss it for a couple of days then I start having hot flashing/night sweats.
Try it! You might like it!
Saturday, November 15, 2008
Lesson learned; even though it should be true doesn't mean that it always ends up that way.
I found out Shea was having some problems in school by accident. His teacher described his usual classroom behavior as: anxious, stressed, threatening, angry and that he was "attacking" other students. These characteristics were described in a multiple choice questionnaire that the UW CHDD wanted his teacher to fill out before our full neuro-developmental screen last Spring.
When I got it back from the teacher, I was stunned. There was no explanation attached, no note saying please call if I had any questions, etc. It just seemed odd. I barely recognized my kid from her description.
I sort of sat on it for a while but grew more and more upset and concerned. I gave copies to our private specialists which is when my head popped off my body! Both, OT and Speech Pathologist were equally concerned with the behaviors described and asked for more detail. The UW CHDD was surprised and quizzical about the teacher's questionnaire because it didn't seem to jive with what they were seeing from Shea either.
I figured it was time to ask the teacher directly but I always wonder about the best way to approach a teacher on delicate issues. In writing? So that you can edit, re-edit and make sure you do not offend plus document the issue all in one fell swoop? Or in person, face to face? Over the phone? What really is the best way to do it? I still don't know.
In this case, I called the teacher and asked her point blank. I didn't go very well. She was defensive and dismissive. I suggested it was time to have the IEP review, she suggested bringing in administration staff. Oh boy! This sure mushroomed fast.
So much of life is posturing, this situation was no different. I remember going to the meeting with Jake and there were 6 or 7 to our 2. It would be pretty normal to feel intimidated or out numbered in a situation like that. Oh, and it was plenty uncomfortable but I have a trick to share. Bring a tape recorder. It doesn't really even have to work although if things get really contentious, I bet you would be glad to have the conversation documented. At the beginning of the meeting, quietly whip out the recorder, hit play and set it down in the middle of the meeting table and watch the mood change.
Another good strategy is to go to the meeting with suggestions, so you aren't just complaining but offering solutions too. My suggestions were; I wanted a different teacher for Shea the next year and I wanted consistent communication from his current teacher for the remaining of the year. I suggested that I would put a spiral notebook in his backpack and if any of this "angry, threatening" behavior occurred they were to document the situation in context so that I could reinforce appropriate behavior at home. The administration did not like me dictating his placement but they made sure it happened.
And, what ever happened to all that weird, scary behavior that I had never seen before? The teacher never mentioned or documented any additional occurrences. Am I to guess it sort of just "went away"? Good question.
Underneath is all, I think the teacher and Shea just didn't click. Maybe he was a lot more work than the other kids or they didn't particularly like each other. I am realistic. This will happen. But, any teacher still needs to hold to appropriate standards and practices. If they don't, it your right and responsibility as the parent to call them on it.
Call it parental advocacy. Call it squeaky wheel. Call it what you want but no one else will do it for your kid. After all, you are the expert on your child, sometimes you have to be aggressive.
Thursday, November 13, 2008
I remember learning about an idea called "disequilibrium" in relation to child development. The theory being that approximately ever 6 month the kid just naturally goes "bonkers"; acts out, fights back, regresses, pushes buttons, or basically causes the parents untold amounts of worry and stress. Somehow they sort of grow out of it or as they say work through "a phase" and then for 6 months all is dandy. Does this sound familiar to anyone?
I think disequilibrium may have something to do with school not working very well. But, there are also a heck of a lot of factors.
Special Education is probably even more susceptible to the up and downs, highs and lows. It could be as simple as disequilibrium or the teacher and the kid don't click. Or the teacher and parent not clicking. It could be unrealistic expectations for student, teacher or parent. Usually no one is really at fault but it may not be going well, none the less. So, what do you do?
First, I think it is really important to state for the record, YOU are the expert on your child. The teacher may be an expert in Early Childhood Development or whatever but you are the expert on your own child. That is valid. Now that doesn't mean you can run ruffshod all over the teachers and staff and make their lives miserable. A parent does need to have realistic expectations for what their public school can do for their child. Notice I say "public school"? Private school is a whole different kettle of fish.
We had a tough year last year and it all finally boiled down to the wrong placement for Shea. He was given a teacher that was much too structured for him, not very maternal and pretty hands off when actually connecting with her class.
It all started badly when I noticed Shea's class was starting before the "special bus" had even arrived. Our developmental preschool is blended with special and typically developing peers mixed together. So, when the special kids arrived they had no time to transition into the classroom setting yet the teacher insisted on starting at exactly 9:05. Yes, there were melt downs a plenty. Not to mention the fact that the typical kids are sitting there like "good little children" while the "special" kids were not so much.
Now, I only knew this because I rode the special bus with Shea for a while because he was nervous and not ready to go on the bus by himself. No transition time for a 3 year old was a big problem for us. I talked with the teacher, didn't get very far but I got around this problem by skipping the "special bus" and dropping Shea off myself a little early with the typical kids so he could have time to transition.
I consider this particular situation a victory because I was able to go around the problem and make sure my kid got what he needed. Sometimes it's just not so simple.
I guess when it comes to public school it means picking your battles. If you are going to go to the mat on an issue it better be important because you aren't going to have the emotional or physical energy to fight each one. Weigh it in your mind, think on it, don't do anything rash. Can you get around the problem? Can you solve it by yourself? Can you shed some light from the outside? Is there someone you can ask for help on the inside?
Many families do decide to pull their specials kids from public school. I think it's a shame. But, you make the decision kid by kid and decide what is going to be the best for them. Often these are gut wrenching choices.
As our bad school year went on, I couldn't help but chat amongst friends and acquaintances. I found out pretty darn quick that my concerns with the teacher were not isolated or even unique. In fact, I started to run into families who specifically pulled their kids from the public school system because of this teach. Sigh.... That isn't good news to hear anywhere. In a small town it is even worse.
So, what do you do? I did a lot of fretting, spinning my wheels, yabbering at my GGF. (Good Girl Friends) Frankly, I didn't know what to do. I kept close watch on my non-verbal 3 year old kid wishing he could tell me how he liked school or not. But, he couldn't and didn't. I found out that he was having problems in class not from the teacher but from a questionnaire.
Wednesday, November 12, 2008
44. Today. I got just what I wanted. A busy but productive day; happy noisy kids at school all day, house projects going great guns, one of a kind art-class made birthday gift from Molly, a happy birthday wish from my mom.
A friend brought over some island foraged Chanterelle mushrooms and some smoked salmon. Jake made me the lightest, fluffiest sauteed Chanterelle Parmesan omelet. And, we topped it all off with ice cream sundaes with candles and a song.
Basically, I consider myself a very lucky gal. There is something more than a little bit free-ing about not really caring about it all that much. There are so many other things to think about rather than how old I am or will I be.
So, maybe next year I will muster up some more energy to celebrate 45. If not, definately by 50.
On one hand, I think that fact that the school district will literally pick your kid up at your doorstep and drop them off from school is a wonderful thing. I absolutely love our bus drivers! And, I make sure to give them particularly fabulous cookie assortments at Christmas time and continually thank them profusely.
Although, we live so close to the school that it really is more about how much Shea loves to ride the bus rather than needing a ride to school. But, I do think about other folks, far flung in the community who really must need and appreciate the "special" bus. There might be kids who wouldn't necessarily participate in the Developmental Preschool if the transportation wasn't part of the equation.
For us, the buses are the smaller van sized versions. All the seats have either seat belts or harnesses and there is usually room for wheel chairs. All the kids on the bus are "special" to some extent and, for us, there is actually a pretty good little social dynamic going on.
Ok. That's all the good stuff and there is probably more I am overlooking right now.
But, there is something very distancing about sending your kid off on the bus. You don't get to see how they act as they walk into the classroom. You don't get to see the social dynamic with the other kids. You don't get to see how they interact with the teacher or the helpers. Basically, you are shut out.
I never felt really welcome to volunteer in the preschool classes and I can understand. Most of the kids are dealing with separation anxiety and having a parent hover is only going to make it worse.
I just always felt like I needed to hyper vigilant due to the fact that Shea was non-verbal and couldn't really tell me about his school day. Ok, I have been known to be overprotective at times. I admit it.
Also, "special" parents don't get to know each other because they do not collide picking up or dropping off their kids like the rest of the parents. This has to add to that feeling of isolation. The "special" bus is indeed special but a double edged sword. I feel a heck of a lot more unconnected with Shea's class this year because we do the "special" bus both pick up and drop off.
I have been lucky up to now and have been able to volunteer in Molly's classroom for an hour or so one day a week each year since Kindergarten. I hope that I will be able to do that again with Shea. I guess a lot of it depends on how "mainstream" we can go.
Monday, November 10, 2008
My GGF (Good Girl Friend) recently upgraded her bunk bed system for her son and had a starter set up for grabs. My husband would say that I have an uncanny ability to acquire stuff but in this case we could really use it. And, the price was right.
They brought it over while I scoured the IKEA website for assembly instructions. By the way, who knew they had all the instructions on-line to download? I didn't! What a brilliant idea.
Anyway, despite the instructions, they both took pity on me and actually set it up for me too! Kudos goes to Mark, my GGF's very pleasant and helpful husband. Shea assisted as well, to the extent that he could which was mainly staying out of the way most of the time.
And, voila! Bunk beds; perfect for a little prince. It goes without saying what any kid would choose when asked, "Do you want to sleep on the top or the bottom?" "Top" Shea immediately answered. The top, of course! Why would there be a ladder if I was going to sleep on the top? Shea did not say that but was probably thinking it.
We set up the top bunk for eventual slumber and the bottom is a full time fort. We stuffed it with comfy pillows and hung some fabric for curtain/walls so it feels like a separate little room. He didn't want to be anywhere else in the house for a good solid week but now he is getting used to it.
He does sleep up top mostly but likes to toss it up a bit depending on his mood. All in all a pretty inexpensive and fun room face-lift. And, a real shot in the arm to a kid who tends to always be in big sister's shadow.
Now she is jealous of his bed which gives him a little bargaining power.
Sunday, November 9, 2008
I remember when Shea was a baby, I had him in my arms as we walked through our back yard. We went over to the chicken yard and I said something like, "Look at the chickens, Shea. Aren't they funny? Look at our funny chickens!" He said, "CH" but then he never, ever said it again. Oh, yes, I thought it a little odd but I waved it off. Denial? You think?
When our doctor flagged Shea's lack of verbalizing at his 18 month check up, I thought, "What's the big deal. He'll talk when he is ready." I displayed a healthy amount of disdain and skepticism about all the "big fuss". I remember floating luxuriously on a river of excuses and anecdotes about other late talkers. And this went on for years. Was that denial? Probably.
Don't get me wrong, denial is understandable and healthy to a certain extent. In this sense, I consider it a defense mechanism that kicks in to protect your heart and mind of the bad news you think may be coming.
Although, even though I was in denial, we still enrolled Shea in the Developmental Preschool despite thinking that he didn't really need it. I was sure in my mother's heart that he was "going to be fine". I remember thinking, "It couldn't hurt."
There is a large and growing body of evidence about the positive benefits of early intervention. But, some parents may avoid it due to their own denial. I know a family whose child was a late talker. They never did identify her or do any treatment or therapy and, sure enough, the child can talk now. But, the child is having problems with school and some learning issues. There is no way of knowing if anything would be any different if early intervention had been pursued. And, I am not preaching that it would. But, it is a lot harder to get a child identified later on in the public school process. Oh, sure you can do it but if they are identified at a younger age, they do benefit for longer.
I would just encourage parents to keep the avenues of help open; and the earlier the better. You can still pursue them even if you are in denial but reaching out and getting more eyes on your child can open up paths that are hard to even imagine at first.
Early Intervention is not time wasted. Even if your child "doesn't really need it", there is no harm done. No child suffers from just a little more quality attention and in some cases it may be the exact kind of attention they need. And, there is no denying that.
Saturday, November 8, 2008
Richard D. Lavoie, M.A., M. Ed. is the author of, “It’s So Much Work to be Your Friend: Helping the Child with Learning Disabilities Find Social Success”
The following is a recent Letter to the Editor Lavoie submitted to the Boston Globe during the presidential campaign.
Governor Palin's journey of a thousand miles
As an advocate for families of handicapped children for over three decades, I have taken a special interest in the role that Trig Palin is playing in the Presidential campaign. Trig, now six months old, is nominee Sarah Palin’s son. He has Down Syndrome. Governor Palin often tells her audience that she will be a champion for “special needs families” because “she knows what you’re are going through.”
With great respect and empathy, I must say, “Sorry, Governor, but you don’t”. You will…someday. But not now. Not yet.
Trig is – and always will be – a blessing in your family’s life. But, Governor, your journey has just begun. You will understand…someday. But between that day and today, there will be a lot of other “somedays”.
Someday…you and your family will spend stressful hours in a hospital waiting room while Trig undergoes corrective surgery. The doctors will call it “routine” …but that characterization will seem foreign and insensitive to you.
Someday…a relative or “close friend” will suggest that Trig not be brought to a holiday function because “it may be too much for him to handle.” Your relationship with that person will never be exactly the same again.
Someday…all the students in his class will be invited to a birthday party…except Trig.
Someday…some stranger in a store will stare at him and ask an insensitive and intrusive question. Startled, you will give a bland response. But for several days after the incident, you will generate great and clever retorts that you “should have said”. (By the way, you won’t be able to recall these “clever retorts” the next time this occurs).
Someday…your adorable daughter who stroked Trig’s hair during the GOP convention will grow into adolescence. Trig will embarrass her in front of her friends and she will tell you, “I hate him! I hate him! I hate him!” (…she will feel guilt-ridden after her rant and will cry herself to sleep that night).
Someday…you will have to place him on the special bus.
Someday….you will feel that “no one truly understands” your son and you will isolate your family. You will discontinue his medications and cancel his therapy sessions. You will come to regret these decisions and will be forced to reconstruct your support system from scratch.
Someday…..Trig’s fellow Cub Scouts will realize that his performance is “holding them back” and will write and sign a petition on construction paper requesting that he be dropped from the troop.
Someday…you will recognize that toilet training will take years…not months.
Someday…he will sob bitterly in his bed and you will hug him tightly. But he will be unable to tell you where his pain is coming from.
Someday…you and your husband will decide to take separate vacation plane flights because of your gut wrenching fear of what would ever happen to Trig if the two of you were to die together.
Someday…you will take Trig on a long and expensive journey to meet and be examined by a “professional” who claims that he can “cure” your son. After weeks of “therapy” you will realize that the approach is baseless and you will wish that you had invested the funds in tutoring and counseling.
Someday….his name will enter the nomenclature of his middle school and will become synonymous with “A Loser”. When a kid makes a public, embarrassing mistake others will call him “a Trig”. Thankfully, he will not understand the reference.
Someday…you will – inexplicably and irrationally – blame your husband for Trig’s plight and you will have an intense and hurtful argument. You will apologize later…but the damage will have been done.
Someday…you will deny the severity of Trig’s problems and you will insist that he be allowed to participate in challenging academic or social programs. He will fail miserably and publicly. You will be greatly guilt-ridden.
Someday…you will attend an Individualized Educational Plan meeting. A dozen professionals will pontificate about Trig’s skills and needs. You will wonder whether any of these people REALLY know your son.
Someday…you will begin researching long-term housing for Trig when he reaches adolescence. You will learn that there is a 5000-person waiting list for placement.
Someday…you will take him out for a special dinner on his Prom Night and you will hope that you can take his mind off the event that he is missing.
Someday….you will sit down with his siblings as they are building their adult lives and explain that they must also plan to play an ongoing role in Trig’s life because Mom and Dad will not live forever.
Most “special parents” I know have lived these “somedays”. They recognize – as you will, Governor- that raising a special needs child also has great blessings, triumphs, victories and golden moments. You will meet extraordinary people on this journey.
Governor Palin, my thoughts, prayers and best wishes are with you and yours’ on this journey. I suggest that you contact other special needs parents and talk to them. They are a remarkably generous group. Learn from them. Listen to them. Lean on them. But don’t try to lead them. Not yet. You’re not ready.
Governor, I pray that you will be ready……someday.
Friday, November 7, 2008
We are notorious for particularly enormous sweet tooths (teeth) in our family. My mom takes the cake; literally, as the supreme duchess of dessert. So, each event is generously lavished with excellent sweets.
So, think of poor Shea; last time we just let him eat the normal (wheat) birthday cake. Oh sure, we steered him toward the frosting. As if that was somehow better for him. But, of course, we saw his pre-diet pallor and behaviors crop right back up again.
Now, we are a bit more seasoned; we have been on the wheat/gluten/egg/soy/whey/peanut/rye/barley/spelt free diet for almost 5 months and try real hard not to "fall off the wagon".
I have been wanting to check out The Flying Apron bakery in Fremont, (3510 Fremont Ave. N. Seattle, WA 206-442-1115) for quite a while. They neighborhood is very groovy and fun and they are apparently now quite famous for their excellent variety of wheat/gluten free and many vegan goodies. They popped up prominently during my first feverish googling after we found out about Shea's food allergies. Since then I have read and heard many wonderful things.
Now seemed like a real good time to try them out with Shea in tow. We sampled a wide array of treats, everything looked yummy. The bakery is very cute, warm and inviting and the staff was friendly. We got muffins, cookies, some little chocolate cakes, a loaf of apple bread and a small blackberry pie. My personal favorite were the chocolate chip cookies (big surprise) and the Apricot Thumbprints but there was a lot to choose from. They also do fancy cakes too and seem to be doing a lively business.
I was disappointed for one reason but it wasn't their fault. I have been searching for a good loaf of bread. To be honest, wheat and gluten free breads have a pretty weird texture understandable considering gluten is the thing that makes bread really fluffy and wonderful. Breads without gluten tend to be very dense. So, I am always looking for a loaf of bread that Shea will eat. I consider a personal mission.
I was looking forward to trying their "house bread" but they were out on this Friday mid-afternoon which may very well be a good sign. If you check their website, they offer "mail order" so I might just order a loaf to give it a try.
All in all it was a successful excursion and I would highly recommend it to folks who are dealing with the wheat and other allergies. I would definitely come back and will probably get Shea's birthday cake from The Flying Apron Bakery next time around.
Thursday, November 6, 2008
Check out the full article if you have the time. This is not, of course, definitive or proof of anything but I thought it was pretty darn interesting.
Here is an excerpt:
Cornell University researchers said children living in rainy counties appeared to have higher reported rates of autism than those in drier areas, after analyzing data from Washington, Oregon and California.
Washington counties west of the Cascades, for example, got four times as much precipitation and had autism rates twice as high as those in the East, according to the study's co-author, Sean Nicholson.
In rain-soaked Seattle, some parents saw these findings as yet another piece in a complicated puzzle. There is no known cause of autism and no established cure.
"I kind of think there is something to the kids not getting enough vitamin D," said LeAnne Beardsley, whose 4-year-old daughter, Keely-Fae, has been diagnosed with autism. "This study really doesn't surprise me at all."Wow! So does this justify a trip from my beloved Pacific Northwest to a sunny clime during the winter?
Shea stumbled downstairs sleepy, blurry eyed this morning. We settled into the usual huggies, snuggies and the diaper change; in that order.
Hold it! Dry pants! Unprecedented.
So I steer/cajole into the bathroom (or as my wacky friend Casey calls the"pee kitchen") to settle Shea down to contemplate the joy and comfort of the potty chair. We read a book...he said "all done" and ta da!
He did it folks! The first morning piddle! I know this may seem a lot of excitement for not much piddle but after all he is 4 1/2 and over here we are celebrating. Now if we can just stay consistent and keep at it.
The other day the OT predicted within 6 months. "Wow!" I exclaimed, "From your mouth to the ears of the potty god! I hope you are right!" She looked a little nervous then, like I might hold her to it. But, apparently she was right. He is less reluctant these days although it is still hard work to get him interested.
If we can just establish a pattern or routine. For example, we have been sitting down to have a potty as we get him ready for a bath. It seemed like a natural. Who doesn't have to go when they hear the tub fill up? So, Shea has pulled that off a couple of times. So, now if we go for every morning when he gets up maybe that will get us a little closer to the goal.
Hurray! Baby steps...
Tuesday, November 4, 2008
I, and so many others, dared to hope and look what happened! Let that be a lesson, pessimism. I will not doubt the collective will and energy of positive thinking again.
Tonight we sleep happy and content and tomorrow we rise to work and build a positive future for our world.
Thanks so much to all who worked hard and hoped.
Monday, November 3, 2008
For people without speech difficulties it is really hard to relate to how very hard it is. For example, me; I have always been a talker. Molly as well, she piped up with full sentences at 2. But, for Shea every word is work and a sentence, no matter how cryptic, is a very big deal.
Bubble lady, our beloved speech therapist, works on specifics every week like: plurals (cars) or possessives (Shea's car) and gives us direction and things to work on at home. Right now we are coaxing the "w" sound. Shea will say "yun" for one or "yait" for wait. I mouth the "w" sound and sign the letter by my mouth and usually he will try it again and get it. It's laborious but each time it gets a little easier for him. BTW - Learning to sign the alphabet does come in handy.
We are also working on the "f" sound, apparently a very hard one. Funny is "sunny" and fish is not even close. We've gotten pretty good at translating. As a family, we can pretty much figure out what he is trying to say.
On his own, he has started to say the "z" sound as in cozy or Maisy. And, the other day he tried out "la, la, la" as in singing. Now, that's new.
But, despite the challenges Shea's sentences are coming. 2, 3 and 4 word sentences are happening more and more these days. The biggest difference seems to be that he isn't as reluctant to try now. And, I swear, a lot of that reluctance diminished when we changed to the wheat/gluten/egg free diet. He was so much more focused and willing to try new words.
I read a touching blog the other day. A mom was saying that she was hoping/praying that her child would just open up and spontaneously speak one day. For her sake, I hope it happens. But, I remember feeling the same way. For the longest time I had dreams that Shea would look at me and the words would just spill out. Easily, like the way it was with my daughter. I would be elated and then I would wake up and realize that it was all wishful thinking.
I asked Bubble lady early on if it was like a switch flipping on and that he would just "get it". Unfortunately no but she gave me a good analogy. "Remember learning to drive a clutch. At first it was extremely awkward, it felt very weird, very hard work getting the sequence right but after practicing it got easier and easier, the more you did it the better you got." That is what Shea's speech delay is like. Each time he tries, it paves the way for future successes.
I like to think of it as walking trails in a deep forest. At first they are hardly visible and you need to hack your way through the brush. It's hard work and sometimes painful. But, each time they are traveled they become more pronounced, easier to see and negotiate. With time and traffic the trails become roads.
Only Shea will be able to tell us where his road will finally lead him. That is what I dream about these days.
Saturday, November 1, 2008
Let me rephrase; the reaching out and connecting is really fun but it isn't all grins and chuckles. Because of Shea's issues, I feel drawn to other family's stories about their children with special needs. Often I sit riveted and shamed by my own self absorbed concern and fretting. As I cruise the blogs, let's just say I keep a well stocked hanky box near at hand. Each one of us, in our way, is reaching out and there in lies the healing and the balm.
This crazy world of ours; what have we created? When I think of the speed and 24/7-ness it makes me wonder how any of it can end up positive; but then I think of all the seemingly arbitrary connections, fueled and powered by technology and see plenty of good stuff happening. Making it easy for average, ordinary folk to share their stories is a high point indeed.
You don't need to be a writer to blog. Yet, if you blog enough, you will probably become a better writer. Funny how that works. Lifes little lessons.
IDEA is our nation's special education law. IDEA stands for Individuals with Disabilities Education Act.
"The IDEA was originally enacted by Congress in 1975 to make sure that children with disabilities had the opportunity to receive a free appropriate public education, just like other children. The law has been revised many times over the years."
As a parent of a special needs child, it is your responsibility to be an advocate. Read up, inform yourself about what your child needs, learn the vocabulary and fight, fight, fight. But, I have found that being armed with knowledge may not be enough unless you are a lawyer willing to file suit against the school district. As a tax payer and a community member, the last thing I want to do is strangle the public education budget any more with a lawsuit. Although, in some cases that may be the only way to effect change.
But in this post, I want to focus on a more insidious strategy; infiltration. Most school districts have Special Education Committees or advisory groups. If not; they should. Large districts probably do have some sort of group just because of the volatile nature of Special Ed. Parents should be able to access and approach these groups for information, updates and to express specific concerns. Small districts may not have a group yet for no other reason than it hasn't been pulled together yet. Somebody needs to push for it, maybe that is you?
That is what I am dealing with here on my little island. Over the years, a lot of animosity has grown concerning the issue. Many frustrated parents have just pulled their kids from public school or have moved out of district. Some are threatening to sue. The school district has finally realized that open communication and dialog is a lot better than paying for and dealing with lawyers.
Welcome; the brand new Special Education Standing Committee represented by staff, specialists and parents. Meetings, of course, are in the evenings on a monthly basis. It is still being determined what this group will actually do but the fact that it has been started is a big step forward. I have been asked to be on this committee and the first meeting was last week and I learned something interesting. There are approximately 1,600 students spread out over our 3 schools. Just a tad over 10% have IEPs and are getting services. I guess this is about normal. In fact, if the IEP population goes higher than 12.9%, the state does not reimburse the cost because they feel the district is over-identifying! I expect I will learn a lot being part of this group and will share details on my blog as it comes.
But, let me conclude by talking a little about "squeaky wheels get the grease." No where is this more true than Special Ed. and working with your public school on your child's behalf. I realize we have all been taught manners and politeness and those should not go away. But, assertiveness, laser beam focus and exhaustive repetition are the weapons that the special parent will need and find useful. I am not advocating being an jerk, in fact, please don't be a jerk. Don't give them any reason not to deal with you. Incivility or "jerkiness" could be seen as a valid reason to not deal with you and your child will suffer because of it. Your job as a special parent is to push and push and push some more for the appropriate services for your child. If you keep at it, they can't ignore you. If you squeak, you will get the grease.
And, sometimes that grease could come in the form of being asked to populate a Special Ed. advisory committee. Consider it a battle won in a long war.