Saturday, February 28, 2009

What's for dinner?

We're lucky out here on Vashon because of all the farm stands. I don't go as often as I should but there are many sprinkled around the island and it is really fun to do some shopping road side. They are usually "self service" or "honor system".

Plum Forest Farm is right around the corner from my house. They have eggs, greens, seasonal veggies and organic Turkeys at Thanksgiving time. So, a day or so ago, I picked up a bag of fresh leeks and thought; Potato Leek Soup.

Now, let me say, I am no chef. I love to eat but my culinary skills are basic. I can make soup though. And, Potato Leek is one of my favorites. Unfortunately, I am the only one in my family who really likes my soups. But, sometimes you just have to be selfish and make it anyway. This recipe has bacon in it as a way to get my bacon loving family to give it a try.

Shell's Potato Leek and Bacon soup

8 med. sized organic potatos diced, leave the skins on if you like
2-3 carrots chopped
1 lb. of bacon, sliced into 1 inch pieces
4-5 leeks sliced, greens chopped and discarded
4 cups chicken stock
garlic - 2 or 3 cloves
cream, 1/2 & 1/2 or Rice Milk to finish

Set potatos and carrots into Chicken stock to boil until soft. Meanwhile, saute bacon until crisp, remove from pan. Hold back several tablespoons of fat and throw in garlic then leeks. Saute until limp.

When potatos and carrots are soft, mash slightly, add leeks and stir. Add cooked bacon, stir. And, add cream, 1/2 & 1/2, milk or Rice Milk.

Serve it up hot!

Potty training update: It's not happening

I had high hopes before our trip. Shea and I went to TARGET and bought several packages of the coolest little boys underwear I had ever seen. Who knew they came in such cool colors and designs! I wish I could wear them! He seemed somewhat excited at the time, especially the Kung Fu Panda ones but it didn't really last. He can take them or leave them. Mostly leave them.

Shea doesn't seem effected by what his peers are doing. Couldn't care less that the other little boys have big boy pants. He's joyously oblivious.

In Hawaii, I figured he could run around on the beach with big boy underwear and, you know, feel the difference. But, it ended up raining a lot more than anticipated and we spent a lot more time inside. Cleaning up too many puddles in a rented beach house does not a good guest make so we went back to the pull ups.

So now, here we are, back to our life, routine and the reluctant piddler.

When you ask him if he has to go, he will say no. Always. He doesn't want to sit down. Really, really doesn't want to. Gets sad about it. Will cry if I force him to sit. Forcing him and making him cry can't be a positive thing.

I try to reason. I beg. I thought I could use a reward system. At first, I started with candy and that wasn't good enough to break through the barrier. Now, I tried the computer, "Shea, you need to try to potty before you can play on the computer." Just try! That is all I ask. But, this isn't really working either. He just doesn't "get" why he should have to do this. Like I said, very reluctant.

Jake is trying the man-pow-wow standing method with not much success so far but it has shaken up the dynamic. At least he doesn't have to sit down on the dreaded seat.

In all honesty, I am loosing faith here. Is he ever going to get there?

It makes me wonder if he can't feel it? I wouldn't even ponder such a thing if he didn't have the "low tone" situation going on in his mouth and lower face. Maybe he has a "low tone" bladder? He seems to have plenty of feeling in his "willy" AKA "little fella", "favorite muscle group", "johnson". But, I doubt willy and potty have much to do with each other.

My OT mentioned that it may be psychological or emotional. He just doesn't want to. And, there is no way to force him. Therefore, we shouldn't. Ok. So then what? Just ignore it until he decides he wants to? In a way it makes sense but I worry we aren't doing the right thing.

She is trying to pull together a couple of names to contact. We'll see.

Thursday, February 26, 2009

Should we help him or give him a wedgie?

You tell me.

Fighting over the shrinking pie

I had a real time phone conversation with a fellow special mom met through my blog earlier this week. How is that for the amazing world of the internets? You know who you are, honey.

After listening to the trials and tribulations of advocating for speech therapy from the state she lives in, it started me thinking.

Here we are, all of us fighting for tiny slivers from this shrinking pie. This untenable situation forces parents to fight with the schools and their states for services, schools have to fight with their states for more funding, meanwhile states beg for more federal funds to pay for the appropriate services. Talk about a vicious cycle. The long and the short of it, no one is really getting all they need.

Bubble lady, our beloved speech therapist, mentioned one time about how most of the special ed dollars go to the highest needs kids. Is this fair? Yes, they are the highest needs kids! But, when it comes to the higher functioning kids, the ones who could really use more speech, or some additional OT just don't get it. The dollars are already gone. Does this mean that special kids are competing with other special kids for services? You bettcha. And, that sucks.

I feel for these people that have to say no. What a horrible job. They know, know with all their hearts, that early intervention is the way to go and will save untold bucks down the road. But, the bucks just ain't there. Should that stop a parent from fighting? Hell no. If a parent doesn't fight for their special needs kid then no one will.

The ones who say no, at least they are intellectually honest, but I have heard stories about condescension, real road blocking and laying the blame at the parent's feet by school or state officials! This is unconscionable. And, a signal that it is time to start documenting EVERYTHING and start thinking like a lawyer.

There is help out there. And, when I went looking, I was impressed with what I found.

The Disability Rights Advocates:

DRA is a non-profit legal center whose mission is to ensure dignity, equality, and opportunity for people with all types of disabilities throughout the United States and worldwide.

DRA's national advocacy work includes high-impact class action litigation on behalf of people with all types of disabilities, including mobility, hearing, vision, learning and psychological disabilities. Through negotiation and litigation, DRA has made thousands of facilities throughout the country accessible and has enforced access rights for millions of people with disabilities in many key areas of life, including access to technology, education, employment, transportation and health care.

The National Dissemination Center for Children with Disabilities:

We are the center that provides information to the nation on:

  • disabilities in children and youth;
  • programs and services for infants, children, and youth with disabilities;
  • IDEA, the nation's special education law;
  • No Child Left Behind, the nation's general education law; and
  • research-based information on effective practices for children with disabilities.
Both these organizations have pages and pages of information, contacts, phone numbers and background. Way more than any special parent would ever have time to look through but the info is there waiting. I find relief in this fact. There are people out there, lawyer critters, that work on these sorts of issues every day. You, me, we; are not alone.

So, how much should you know backwards and forwards and commit to memory? Not much. Only as much as is relevant to your particular situation and the extent of your free gray matter. But, some of these terms and contacts may come in handy if you ever have to write that formal letter to the school or state. You don't have to be a lawyer to sound like one or know the law like one.

Cripes!

Ok, I am not looking for sympathy. I understand that there are great swaths of the Northeast and Midwest that have to deal with loooonnnnnggggggg winters each year. Somehow you manage because you folks are TOUGH! Way tougher than me.

But, this is the maritime Pacific Northwest! You know? Sea level! I know today I wake up to just a dusting and not a big deal. Although, North westerners are particularly stupid about snow and ice driving. So, for someone, somewhere it is a very big deal. But, this is a place that would typically go years without a single flake while this winter we have had record flakes.

Is this what my pal Al Gore was warning us all about? Is this evidence? Are we year by year, tweaking was something so much bigger than ourselves that we are changing climate?

My kingdom for an electric car! With snow tires.

Wednesday, February 25, 2009

Loosing a child


From the New York Times:

"Ivan Cameron was just 6, a boy with a lovely smile who was born with cerebral palsy and a severe form of epilepsy that deprived him of the ability to walk, talk or feed himself. He spent much of his time in the hospital, sometimes with his parents sleeping on the floor beside him, helping care for what they called their “beautiful boy.”

Loosing a child has the be the hardest, cruelest, most devastating experience to ever happen to a person. My thoughts and prayers go out to the Cameron family and all the other families that have had to go through this excruciating loss.

I am reminded of the profound vulnerability of parenthood. There is no balm. There is no shield. It is the way it is. We all feel the injustice of such an occurrence yet it happens everyday.

I will share a story. Jake's older brother, the shining first born son, was killed in a car accident at the frighteningly young age of 23. Horrible, sad, a sickening loss. Jake was 12 years old. Something like this never goes away. It is part of the family fabric for all time. Jake still mourns and it is part of who he is. Does time help? Maybe but the hurt never goes away. His parents never really got over it. And, who could blame them. There is no getting over loosing a child.

Remember during the Vice Presidential debates? Joe Biden told the story of sitting bedside of his small son who survived the car accident that killed his wife and small daughter all those years ago. He choked up on national television. A wound like that never really heals. I liked Joe Biden before but loved him after that. This is a man who knows what is important in life.

There are many special parents out there living with and struggling with the same challenges that the Cameron family experienced. My thoughts are also with you tonight.

Tuesday, February 24, 2009

Who does what at your house?

A marriage is a balance. Sometimes a balancing act? Perhaps. But my point is indeed a marriage is a balance.

Over the last, almost 17 years, Jake & I have settled into a balance. Somehow, most of the time, it seems to be working.

I heard somewhere that a good marriage is learning how NOT to open your mouth and speak 20 times a day. Snark? Maybe. I think it means try not to criticize too much, it looses it's impact.

It is usually very difficult to take a peekinto someone's marriage. As if you would even want to! But, here you go, a quick peek into mine:

Who does what at my house:

Banking, bills & paperwork - me
Furnace, plumbing & anything mechanical - Jake
Cars: Buying, servicing, cleaning - Jake
House cleaning - both
Cooking - both
Dish washing - Jake
Laundry - me
Keeper of the calendar - me
Teeth brushing with Shea - Jake
Homework & violin - me
Bedtime stories and tuck in - me
Dealing with spiders & other pests - Jake
Cats - both
Cloths buying for mom & kids - me
Clothes buying for dad - Jake
Grocery Store - me
House repair, fix, remodel - Jake
Doctors, Dentists & specialists - me

Now that I am looking at this list, I guess I am the Organization person and Jake is the Operations person. That actually about sums it up.

How does it work in your house?

On selfishness

Humans are selfish creatures. We're born selfish; Me, me! Want, want! Now, now! These are pretty basic feelings and we can't be blamed too much for them. Is good parenting basically the attempt to curb that voracious selfishness in our children?

I guess as parents we certainly see it up close and personal while reciting the parent's verbal loop; No hitting or kicking, say please & thank you, that is not yours, wait your turn, those are not nice words, etc.

And what about us adults? Are we selfish too? You bet, many of us. Honestly, I am a pretty selfish person. I am selfish about my time. I know this and admit this about myself. Although becoming a parent sure put a real kink in it. I still am selfish but not able to express it as much.

Remember that sweet baby that someone entrusted to you at the hospital? Who is this kid? Is it really mine to take care of? It doesn't have an off switch! Something new blooms from that realization. I am no longer and will never be really 100% in control of my life situation ever again. In fact, it's not even about me anymore! Then you become distracted while you busily try to calm a screaming infant.

That is parenting for you; a crash course in selflessness. And, being a parent of a special needs child? Even more so.

I like to visit other Special Parent blogs. It never ceases to amaze me the bravery and vision, the honesty and hope, the patience and, yes, the selflessness. Some of these blogs inspire me so much that I list them on my blog so that I can easily keep track of these amazing families. I encourage you to visit them too.

Parenting is a tough job, a selfless job. The rewards are plentiful, resplendent and soul warming but nebulous at times.

I do think as parents, special or not, it is natural to want to pave the way for our kids. We want to open up doors of opportunity that will light a fire for their happy futures. We all want the best possible life for our kids while taking into account their skills, challenges and aptitudes. Whether you are trying to get your kid into an excellent college or trying to help your kid to hold a paint brush. It is all relative.

This we have in common with every other parent in the world, throughout time. Our common thread with humanity.

Sunday, February 22, 2009

When is an Asperger's diagnosis a happy occasion?

When you always knew something was different about you and had never been able to put a name to it. When you wondered if you were the only one in the world who felt a certain way. When you want to help other people understand what life is like on the Autism Spectrum.

Meet Elyse; a 17 year old with a very inspiring story.
*****************************************************************
Tri-Valley student triumphs against autism
From Newsminor.com, By Kris Capps

HEALY, AK — Elyse Lynn has a story to tell.

It’s a story that is uncomfortable for some, revealing for others and perhaps therapeutic for Elyse. It is the story of her life as a teenager who suffers from Asperger’s Syndrome, a form of autism.

Elyse, 17, shared her story this week with about 100 teachers at the State Special Education Conference in Anchorage. She told them what it’s like to be a senior at Tri-Valley School in Healy, trying to fit in with her classmates and the world around her.

That’s not as easy as it sounds, but with the help of her teachers and her community, she has found a way to make it work.

People who suffer from Asperger’s want to fit in, but they simply don’t know how to do it. They often are socially awkward and don’t understand conventional social behavior.
To the untrained eye, a child with Asperger’s Syndrome might seem like a normal child behaving differently.

That was the case with Elyse, who always was on a little different wavelength from her peers. It took years to identify her affliction.

Even as a youngster, Elyse knew she was different, but she didn’t know why.
“I guess I knew in elementary school,” she said. “I was always slower putting on my clothes to go outside for recess, and people were getting frustrated with me. They thought I was mentally slow.”

Elyse said she just kept thinking, “Why are these people getting mad at me? I’m not doing anything wrong. I’m just being me.”

It wasn’t until she was 13 years old that she was diagnosed. Elyse was the first to recognize it. She spotted a poster about autism on the bulletin board of the local post office and read the symptoms of Asperger’s Syndrome.

“I think this is what I have,” she told her mom. Her parents, Elwood and Beth, had struggled for years to diagnose Elyse’s condition. They instantly began investigating this new possibility. Soon thereafter, her mother came home with a big smile on her face.
Her mother announced, “Elyse, you have Asperger’s.”

It was Elyse’s a-ha moment. “There was a reason,” Elyse said, reliving that moment of grand relief. “I knew everything happened for a reason. That reason might not be clear at the present time, but it will be revealed eventually.” Finally, she had an explanation for her behavior.
**********************************************************************
I encourage you to read the whole article. A very special look into this brave and intelligent young girl's life.

Kaiser sued for discimination against autistic children:"Sham excuses"

News Release:


OAKLAND, Calif. — A class action suit filed today in state court in Alameda County charges that health care organization Kaiser Permanente directs a “blatantly discriminatory” policy against children with autism.


The class action suit, seeking relief on behalf of children with autism and their families who are members of Kaiser, was filed by Disability Rights Advocates (DRA), a Berkeley-based non-profit law center, and Chavez & Gertler, a national class action litigation law firm. Other major counsel are Gerard V. Mantese and John J. Conway. The suit seeks to end discrimination against disabled children and does not request money damages.


Parents of disabled children charge that Kaiser, the largest integrated health care delivery system in the country, has as a matter of policy systematically refused to provide treatment for children with autism. Kaiser’s status as a health care service plan provider, federal and state anti-discrimination law, statutory requirements, and Kaiser’s contract with its enrollees all prohibit Kaiser from implementing blanket refusals to treat children with autism. According to the suit, Kaiser is required to treat autism as fully as it would a heart condition or diabetes, but Kaiser refuses to do so


Background

Autism is a neurobiological disorder that is estimated to occur in one out of every one hundred and fifty births nationwide, and most often appears by age two. People with autism spectrum disorders (ASD) display severely impaired language and communication skills, impaired social interaction, restricted interests, repetitive behavior, resistance to change, obsessive attachment to objects, decreased motor skills, and lack of emotional connection or comprehension. Without proper medical care and treatment, ASD can be a debilitating condition, leading people to grow into adulthood without the ability to perform the most basic functions. With early and proper treatment, however, children with autism can see significant gains in their ability to interact and function in society. Early and effective treatment can also save hundreds of thousands of dollars in future medical costs.


Kaiser’s “sham excuses”

Kaiser cites a variety of reasons for denying treatment to children with autism. These include the excuse that treatment for autism is not a “health care service” and labeling treatment as “educational”. The lawsuit states that each of these reasons is explicitly invalid according to health and anti-discrimination laws, as well as Kaiser’s own Evidence of Coverage. For example, Kaiser systematically denies occupational, physical, and speech therapy to children with autism, despite prevailing opinion in the medical community that these are basic and necessary health services for patients with ASD. Furthermore, Kaiser provides occupational, physical, and speech therapy treatment for other disorders, but not for autism


Negative Effects

The lawsuit alleges several ways in which Kaiser’s policy negatively affects the child, the child’s family, and the public. The complaint refers to a body of research showing that there is a critical window of opportunity for treatment in the development of a child with autism, and that serious damage can occur if the family is denied coverage by its health care provider during this critical window.


Secondly, the medical treatments that Kaiser denies to a child with autism can place significant financial stress on families, who must already bear the strain of caring for a child with autism. It forces parents to weigh the emotional and mental burden of watching their child deteriorate against the financial cost of securing necessary treatment. Many families do not even have the financial means to make this tragic trade off.


Thirdly, denial of treatment puts an unfair strain on the public. Although Kaiser provides speech therapy and occupational therapy to its members for other physical and mental conditions, it insists that children with autism seek those services from publicly-funded school districts and regional centers for people with developmental disabilities, thus directly making taxpayers pay for treatment for which Kaiser is responsible and for which Kaiser collects premiums.


Anna Levine, an attorney for Disability Rights Advocates, commented: “Kaiser claims to help people holistically “thrive,” but denies children with autism basic care. Kaiser’s flagrant neglect of its duties as a health care provider has caused fully-insured families emotional pain, financial hardship, and irreversible damage to their children’s health and development. It’s time we hold Kaiser accountable.”


Mark A. Chavez, co-counsel on the case, commented: “Kaiser’s policy to deny treatment for autism is shameful and unlawful. Kaiser should not be allowed to continue treating children with disabilities unfairly. These children are the most fragile victims of an uncaring corporation, and we can no longer allow Kaiser to let them slip through the cracks.”

Saturday, February 21, 2009

Scissor, Missor, Wizzor

Gently nudged by Bubble lady, Shea and I play this game. She says that rhyming words can help with vocabulary development, articulation because he says the same ending sound over and over. But also cognitive planning because he has to think of another starting sound and add it to the ending sound. Apparently, this is a game that packs a punch.

White, kite, bite; usually our words are one syllable words.

Cow, wow, pow; mostly easy, familiar words.

Poop, loop, coop; occasionally funny, goofy words.

We trade off, back and forth until we have gone through almost every letter in the alphabet then he will pick a new word to rhyme. It doesn't need to be a real word, in fact the made up words are even more fun.

"Rhyme with scissor, mom." Shea starts the game as we are snuggied in bed this morning. Good one! Two syllable word but nothing really rhymes with scissor. Doesn't matter, we are off!

This is a game perfect for the car, airplane, waiting on the ferry; all the little boring lulls of life.

When Bubble has suggested something like this in the past, I have to admit I only half listened. If I didn't immediately see the power or importance, I would just file it in my already very full and barely organized mental file and then eventually forget about it. But, as we move toward our 2nd year anniversary with Bubble, I have gotten better at just going with her suggestions. Realizing it doesn't necessarily have to make that much sense to me. It's worth a try for Shea's sake.

Or, simply, making a little investment in a leap of faith. Sometimes it pans, sometimes not but maybe the leap in itself is the point.

Friday, February 20, 2009

Hawaii photo dump: Feb 09

Sand like no other place in the world
Surfin' USA
Wind blown Shea-zie!
Gram-gram rocks!
Grace and Shea did some serious bonding this trip.
So many sand castles, so little time.
Good one of "the boys".

Home sweet home!

It feels mighty good to be home. Even though leaving paradise is a bitter, bitter, BITTER sweet pill to swallow, we were almost giddy to be home late last night.

Re-entry was easier this year; I think we are getting better at it. We managed to shave an hour off our return time by doing carry on only and parking near the airport. That hour sure helped everyone's attitude. We rolled into the driveway at 11:00 PM but it only felt like 9:00 due to the time change.

So, what is it about 2 kids being good as gold on the airplane but as soon as they get in the back seat of the car together they loose it? Poking, bugging, annoying, distracting, driving the parents nuts? I am not sure why it has taken us this long to solve it by putting Molly up front and I move to the back. Eureka! Peace at last.

So, not only were we happy and relieved to be in good old SEA town but we were all laughing and telling jokes in the ferry line. Nice to end the trip not wanting to throttle the kids.

Again, a huge Mahalo to Ruth & John for inviting us to stay. We had a lovely time. You guys are the BEST!!!

Tuesday, February 17, 2009

Cousins

Some of my fondest memories from childhood are of extended family gatherings with all the cousins in Billings Mt, no less. Several summers we would all car trip to my maternal grandparents house with the kids in tow. The time was spent in delicious unstructured, loose supervision and all us kids just had a blast. We were about the same age, with in a year or two of each other: 4 girls and 2 boys. The aliances shifted quickly, tears and laughter bubbled forth; it was the salad days. Touch football, public swimming pool, brand new cowboy boots. These were days before the VCR and no time was spent vegging on the tube. Cousin time was too precious to waste.

I think of this now as our next generations of cousins swing in to the visit with a vengence. My beloved cousin A and husband M arrived last night and our last few days on paradise with be spent in lock step with them. A lovely family, two kids a little younger than Molly and a bit older than Shea. Perfect.

We talk about making this Hawaii trip an every year thing and so far we are living through the 2nd annual. We hope for many more years to come but try to appreciate it while we got it. Who knows how long we can keep it up. Life has a way of getting in the way of the best laid plans.

But, for now, it is golden; with fun, surf, lots of pictures and many memories in the making.

UPDATED: to add pictures of this next generation of cuzzies!

Saturday, February 14, 2009

See how easy this is?



Careful when trying this at home!

Friday, February 13, 2009

Math homework

Molly was given a packet of math homework to do while she was gone. It was the price she had to pay for taking a whole week off from school. The beloved math teacher or the self-professed "Evil Mutant Math Teacher" didn't want her to miss out on any of the fun.

Amazingly, Molly has diligently worked through the packet all week without being nagged. I can barely believe it. Who snatched my kid?

She takes her math pretty darn seriously and is quite proud of her math brain. When she was tested as "good in math" I shrugged and said, "Duh?" I remember her doing simple multiplication and division in her head at a pretty young age; like 5 and before Shea was born.

The conversations would go something like this:

"Molly, there are 12 cookies. If you, me and daddy get an even number, how many cookies to we each get?" She didn't have to think about it very long, it just makes sense to her.

Last May, she was one of the 2 highest scoring girls in her school and was asked to go to the Math is Cool State Championship in Spokane. Hundreds of kids from all over the state came to flex their math muscles with many private school represented. As a team they didn't do so well but individually Molly did great. She was crushed when her team lost and did not even place but was soothed with the knowledge that she did well individually. I personally think she is calm under pressure due to all the music performance stuff she had done from a very early age.

So where does this competitive streak come from? This is one of my concerns about splitting the kids up into different math classes at 4th grade. Many parents seem to really love this tracking and catagorizing their kids. Honestly, I was skeptical and I worried what the kids thought about it.

Last year Molly started out the school year feeling very insecure about her Math skills saying, "I am not smart enough to be the highest math class. Those kids are all smarter than me." I was pissed and dismayed. I hated the idea of the kids being stressed and over critiqing themselves at this age. But, as the year went on she hit her stride and seemed to settle in. But, I still wonder; how do the other kids feel about it? Do they feel superior to the other kids that are not in the high math class? What about the kids who are in the other levels? Do they feel passed over? Will they give up working hard because they don't think "they have it in them"?

You always hear about something happening to girls at around 6th or 7th grade in regard to math and sciences. Many stop caring, raising their hands in class, feeling they should'nt or can't compete. I hope that doesn't happen to our girl. We try to make it as fun as we can to counter balance all this striving stress that comes with it.

Hang in there, little math brain. Math is indeed cool!

Wednesday, February 11, 2009

Sunburns

Classic. The first day! Molly's face is bright red and she woke up with little water blisters on her cheeks. Poor baby. And, she is the kid with the olive skin.

Shea is not so bad since we were more diligent with the sunscreen. Molly just wouldn't come out of the surf!

But we will recover.

The pounding waves scare Shea but he has decided that it is great fun to stand on a boogie board and allow the wave to reach his board. Sometimes it even lifts him up a bit or tumbles him down into the sandy back pull of the wave. Wet, excited, sandy and super-charged; he jumps up to give it another go.

As the waves hit the beach, they stir up billowing clouds of the sugar fine sand. When you go in or come out of the water, it gets everywhere and in everything; all cracks and crevises and throughout your hair.

Although, it is perfect sand castle medium and the building will begin in earnest today. My quest is to get a beach umbrella where I will park myself majestically for the rest of the stay.

Molly and I went on an evening beach walk to see the full moon last night. Time almost stands still until you realize you have whipped through your days.

Tuesday, February 10, 2009

Paradise is still here


Well, paradise hasn't changed a bit. It's the same old wonderfully warm, lanquid, slow, relaxing, sandy place.

Deep sigh...

Rained yesterday but warm rain. What a novelty.

Transportation day was something else. Yesterday we did; car, ferry boat, car, shuttle bus, airplane, shuttle bus, rent a car. Whew.

All in all about 12 hours door to door. Exhausting. Kids were as good as gold. I was wondering how Shea was going to be this year now that he is talking more and more. Well, he is talking more and more and really needed full time distraction and playing from one parent the whole plane ride. But, like I said, good as gold.

All is well. Photos to follow.

Sunday, February 8, 2009

Peanuts...scary stuff these days

I am sure sure anyone within visual contact of this blog post has heard about the Peanut Salmonella scare that is sweeping the nation.

So far there are 8 people who have died, 575 confirmed cases and 1,550 products recalled. This is the big time folks and it ain't pretty. If you have't yet plugged into the ugly, filthy, disgusting details and want to; check here, here , here and here.

So, I got this letter from my Costco stating, "our records indicate that you have purchased Clif Bar & Company products from Costco within the last 6 months..."

Holy peanuts, I am glad they keep track of all this stuff but 6 months ago!? That is a lot of Zbars down the old gullet! The letter went on to list the specific products of concern.

Clif Kid Orgnaic Zbar Peanut Butter - Best/Sell by: 07JUL09 to 05SEP09, and 12NOV09

I have mentioned and reviewed this product several times on this blog. This is a staple in our house and Shea whips through a box with frightening speed. But, because he is allergic to Peanuts, he never ate the peanut variety. In fact, repeatedly I would buy the variety pack and had to donate the Peanut Butter ones to the Food Bank until I wised up and found a place I could get, in bulk, just the flavor that Shea could eat. Meanwhile, what about all the Zbars I sent to the food bank!? Yikes!

Reading down the list:

Luna Bars Nuts Over Chocolate - Best/Sell by: 29JUL09 to 03 OCT 09 and 11NOV09 to 14NOV09.

I almost spit out my Luna Bar when I read that!!! I literally have one of those deliciously chocolately, multi-vitamin disquised as a candy bar, marketed to the ladies energy bar most every single day! It's my treat. It's the thing I eat at about 3:00 before the kids get home from school when dinner is just a vague vision on the horizon. I love those things!

Quick; scurry to the stash! Checking dates, dates, dates, lots of dates...whew. None match the offending, scary dates. I guess I dodged this peanut shaped bullet...this time.

But, it got me thinking about how susceptible we are to quality control in the food supply. How chincing, fudging, lying and making it easy to lie can literally kill people.

What a damn shame. And, now they are saying this stuff has been sent out to schools for the lunch program?!

I'll tell you people, food is one of the few things we still actually make in the country. Can we please, expect, demand, insist that our food supply is safe?

Connections

One of the reasons I started this blog is to connect with people in an easy, fun way. Sure, it is a great way for family and friends to stay in touch and I love that. But, I wanted to connect with people like me who may feel or have felt the profound isolation and vulnerability of being a special parent. Nothing is lonelier than that.

I am always mightily touched and gratified when a little piece of magical connection happens. And, don't think I exaggerate; I do think of it as magic.

Thank you to all the people who leave little comments or visit my blog. Maybe you know exactly what it is like, maybe you are just starting out or maybe you are just curiously peaking from the edge. Frankly, it doesn't matter because I just don't feel as alone anymore and for that, I sincerely thank you.

I remember when it began to dawn on me that Shea had real challenges that he was not going to just "grow out of". Those were black days indeed. I had to get my brain around what being "special" really was and how I was going to look at it. Denial and avoidance don't work for very long as a strategy and the only real comfort I could find was hearing other "special" parents stories. Those parents understood. I could see it in their eyes and hear it in their voices; they knew exactly what I was going through.

And, what I was able to see was that these parents love their kids as much or more because of the struggle. Just like other parents, they try to see the world objectively to predict the pitfalls and soften the stumbles but even more so. Specials parents possess an almost herculean energy, drive and focus fueled by these frustrations and sorrows. In fact, I doubt there is anything a special parent can not do once they set their mind to it, except of course make their child different than who they are. Many special parents throw themselves into activism, research, art, writing which perhaps is the healthier side of the equation. Many special parents buckle under the strain, both financial and emotional and it is common for marriages and partnerships to dissolve.

It is up to each of us to find and adopt the path that will guide us during these rocky years. After a while, a body of experience builds up in each of us. Whether we believe we have wisdom to impart or advise to give, we do. Because part of this struggle is to somehow, some way not feel so alone.

That is what I want to do with my blog. I am no writer but if I can touch one person and make them feel like they are part of a bigger community of parents who all know what it is like to weep, fight and struggle for their child with special needs then I have succeeded.

So, cheers to you, reader! Thank you for helping me help someone who is helping yet another. This is what it is all about.

Thursday, February 5, 2009

Big boys, little boys and their toys

I know this is common and in no way unusual; boys of all ages still loving their toys.

My big boy, Jake, is on a Motorcycle kick. It started with a good healthy interest in scooters and as gas prices soured so did the interest level. Being handy, having an engineer's brain and a shop full of tools, Jake has been able to buy "fixer" scooters and sell them on Craigslist for a considerable profit. As the purchases, sales and inventory expand we are beginning to call it Scooterville. A somewhat tongue in cheek nod to the collection.

Ok, so I guess that was getting too easy. Now, comes the motorcycles. Please understand, I have no interest or knowledge in motorcycles. In fact, I have a good healthy fear of them! But, I am the one that has introduced him to the wonders and joys of Craigslist therefore I encourage the hobby. As long as every single anal retentive safety measure is taken. He complies willingly.

This could be one of those examples that "they" always suggest about healthy relationships; let your partner follow their bliss. Well, Jake's bliss right now is somewhat rare Honda motorcycles and he is in good company.

Shea has realized that this might just be really cool. His toy joy is predominantly of the 4 wheel variety (trucks, cars and more trucks) but 2 wheels are good in a pinch. When Jake is working on his motorcycle, they bring Shea's little bicycle over and "work on" that too with the wrench family. Need I explain? The 4 smallest wrenches are: Dad, Mom, Ya-ya and Shea and are treated with the tenderness of adored dolls. Many an afternoon can be wiled away in such "mechanical" pursuits.

I hate to be sexist and gender specify and I may get in a little bit of trouble for writing this but boys sure seem to like to work with their hands, manipulate tools, take stuff apart and try to put it back together. In my experience, they just seem to come out that way. I would call it hard wiring if I dared. I know there are plenty of examples and stories to the contrary. And, please share them! But, Shea never had any interest in stuffed animals or dolls (except for the wrench family) and glommed onto a little toy truck before he was off the boob. Although, he does like the toy kitchen and the play food. So, maybe that shows that stereotyped gender roles have progressed somewhat.

Anyway, it doesn't really matter that much, does it? And generalizations will always get me in hot water. So, how about; Viva la difference!

Springy Spring springs forth?

Just in time for our trip to Hawaii, Spring sneaks up on the Northwest.

Ok, so it is still chilly and it very well may snow again, who knows these days.

But there was something different on the wind yesterday. It was first day that we took coats off outside. Jake didn't have to build a fire in his shop and the doors were wide open. The first Crocus popped up and bloomed in the front garden. Birdys zoomed. The lone chicken looked and acted somewhat happy. The cats were all in good, lazy, lay in the sun puddle moods.

Shea was particularly cute zooming about unfettered.

This is why I love the NW; signs of Spring when you really, really need them.

Wednesday, February 4, 2009

Gravel Walk - An Irish Pub Tune played by Molly

video

When Molly was 3 or so, she nagged for 2 years for violin lessons until we finally gave in. Neither Jake or I had any experience with this instrument but knew it was "hard". Molly started at 5 1/2 and did the Suzuki method with a very experienced Suzuki only teacher for 3 1/2 years. Molly hung in there but in the end, she did not like the excessive structure, the lack of flexibility, there wasn't enough creativity, she wanted to learn different songs. She had hit a brick wall and her heels were dug in hard. I was seriously bummed.

We were lucky to find Sarah. She welcomed, encouraged and promoted a much more flexible, creative, student friendly violin experience. And, Molly has been able to discover a strong interest in Celtic music. And, yes, her classical training has helped her be a better violinist. Nothing is wasted.

Gravel Walk is a beautiful example of the caliber of tune Molly is playing these days. She has worked on this one long and hard to the point where I have paid her for the "rights" to post this piece on my blog. It cost me $2 and it is worth every penny.

We are also lucky to have access to the Vashon Celtic Players website; born and fostered here on our little old island. There are literally hundreds of Celtic tunes with their scores, some chord charts and an audio sample of each song. This is a HUGE resource for us. Gone are the days of buying various Celtic song books hoping there will be a new song that will capture Molly's fancy.

Fabulous Sarah suggested Gravel Walk. She knows that if Molly doesn't have a challenging piece to work on, she won't even open up the case. Which is honestly the hardest part about practicing; just...opening...up...the...case.

Thanks Sarah. You have made all the difference. I am so proud...of both of you.

Playground angst

And, so it begins... I know it's rough out there. I remember it myself. Kids just know instinctively how to press those buttons. And, making fun of your little brother would naturally be a hot spot for Molly.

Yesterday, one of her little friends or classmates called Shea a "retard". She was being baited. Who knows what the surrounding conversation and/or antics were like. Perhaps Molly was spinning pretty fast and needed to be taken down a notch or two. It probably doesn't matter that much. The fact is that she trembled with rage at the obvious cruelty. She struck out and hit the girl with her coat. Well, I expect they got the reaction that they were seeking; anger. Sometimes Molly seems unflappable and I expect they were just trying to get a rise. Well, they did.

We talked it all though last night, of course. Shea has a speech delay and is learning to talk. There is no evidence of retardation at this time. Molly knows this but it doesn't really matter. Perhaps they weren't factually correct but Shea is "special" and someone was making fun of him for something he or we have no control over.

Fierce loyalties will always create a chink in our armor. People instinctively know this, even children. But, would I have it any other way?

I remember when I was quite small, 1st grade or so, my father told me to always stick up for my little brother. I must've listened or maybe it's hardwired because one day I caught wind of him being picked on by bigger boys on the playground. I charged right out there to protect my little brother (a kindergartner) and got into a scuffle and popped the boy in the nose.

Blood, the principals office; the whole 9 yards. I remember it vividly, the principal asking why I hit the boy. "Because my dad told me to protect my little brother." I replied and can still see the bemused expression on the adult's face. I didn't really get in trouble that day. I knew I was justified.

This is a tough one and it will come up again. It did bring up a good conversation about exclusion and how the special kids are treated at school. She's a sensitive little thing and picked right up on the injustice, the discrimination.

The world can be an ugly place, baby. Let's take that bruise and turn it into a shield.

Tuesday, February 3, 2009

Can't we all just get along?



This is a video of a homeless man in Santa Barbara and his pets. They work State Street every week for donations. The animals are pretty well fed and are mellow. They are a family. The man who owns them rigged a harness up for his cat so she wouldn't have to walk so much (like the dog and himself). At some juncture the rat came along, and as no one wanted to eat anyone else, the rat started riding with the cat and, often, on the cat! The dog, will stand all day and let you talk to him and admire him for a few chin scratches. The Mayor of Santa Barbara filmed this clip and sent it out as a holiday card.

Hat tip: Thanks for sending this Laurie, of Laurie's Playground our wonderful OT

Monday, February 2, 2009

If....

T minus one week to go

The weather was frigid but beautifully sunny today. Daffodils are beginning to pop up around the garden. Things are definitely looking up.

Jake is zeroing in on the last legs of the addition. Why is the last 5% of a project traditionally the hardest and most time consuming part?

What time is it? Time to go to Hawaii!!! I know, I know; no one wants to hear about it but I fully intend to do a blog post or several during the trip so I better warn everybody. And, yes, it looks exactly like this picture above.

I can somewhat partially blame my parents because they make the trip too hard to pass up. They have found a deliciously un-touristy area of Oahu and have taken to renting beach houses big enough for guests. The deal is: we are welcome to visit. Like I said, too good to pass up. Jake, me and kids leave early next Monday.

I find it absolutely amazing the gyrations that need to occur for us to just get out of town for a spell. There is a literal flurry of arrangements to make with the schools, with the violin teacher, swimming and singing coaches, OT & Speech specialists, etc. And, that is just the kids. There is me and all my clients too. Yes, I will be reachable during the trip; via e-mail and cell number. And, something ALWAYS comes up while I am gone. Thank goodness I have a really good, responsible island person to help if anything really does hit the fan.

There is the mail, the house, the 3 cats and the lone chicken to think about. Luckily we have good friends who may or may not be looking forward to hanging on and off in our casa. I am going to bring these wonderful helper people something really good to thank them like a big bag of Macadamia nuts.

We have grown up a bit since last year's trip. Figuratively and literally. Shea is really talking this year and I expect the plane ride to go smoother. I have decided to get several packages of big boy underwear in a very roomy size (easier to pull up and down) to see if we can jump start something while we are gone.

And, we are doing only carry on luggage this time to get away from the absolutely exhausting scrum in baggage claim. It was almost embarrassing how much stuff we brought last time when we only ended up needing a couple pairs of shorts and t-shirts, a bathing suit and toothbrush. This time we each have a back pack each. I figure; if we didn't bring it, we'll buy it or do without.

I can almost smell it. Paradise, here we come!
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