Wednesday, January 19, 2011

Kitty Hoynes Irish Pub Hosts St. Baldrick's Event on March 27, 2011


Life can change in a heartbeat.  On July 5, 2010, the beautiful little girl in this picture passed away from acute myeloid leukemia.  AML is very rare in children and deadly.  In the spring of 2010, Juliana's leukemia had finally been in remission long enough for the doctors in Boston to do a bone marrow transplant.  Although the bone marrow was a 100% match, the leukemia came back, and Juliana lost her life only 5 days after her third birthday.

No parent should ever have to know the pain of watching their child die.  On March 27, 2011, in Syracuse, NY, the Kitty Hoynes Irish Pub and Restaurant will host a St. Baldrick's headshaving event.  Their goal is to raise $330,000 for childhood cancer research.  Team JJ's Angels will be there, with Juliana's father, Mike LaMonica, leading the charge for a cure.  So far, our team has raised $3,943 of the $7,183 raised in total.  Please help us to increase that number and meet Kitty Hoynes' goal. 

Please go to St. Baldrick's Event to donate, if you haven't already.  We've had numerous, generous donations and for those, we thank you.  But we have a long way to go.  The JJ's Angels team is hoping to raise $15,000 for the event and Justin and Mike are currently in the lead.  If you haven't already, please add to our total and help us reach our goal.

Thank you from both of us!

Justin and Chelle

Wednesday, January 12, 2011

Over-Achieving All the Expectations






Joey, Age 5


It's amazing how far you can come in nine years.  Nine years - I know.  It sounds like a very long time.  But for me, I look back at what we were told when Joey was age three and what my amazing kid is now accomplishing.  A kid who I was told had an I.Q. of 62 and probably would never be in a regular classroom or speak is now a mainstreamed sixth grader with almost straight A's, placed in the advanced (yes, that's advanced) math class, and on the math team.  62?  I highly doubt it.

Every Tuesday afternoon, we get our "Edline" report online, which details how our child is doing as of that week in school.  While we struggle to get our eighth grader to do his work and I am constantly having to nag him about missing assignments that show up on that report (something I also had to do with our now 19 year old son who is a freshman in college and finally figured it out), Joey consistently has all of his work completed and at last check, he had six A's and a B+ halfway through the second quarter of the school year.  This kid is on a roll.  Have I mentioned his school's team won the first math meet this year?  Joey's the youngest kid on the team.

Autism is a word that really scares people.  I was so upset by the initial diagnosis that I took Joey down to UVA and saw a neurologist there.  Also autism.  Another neurologist in Northern Virginia, who observed Joey bouncing around his office for several minutes, looked at me with sympathy (and I swear, pity) and said, "He's autistic. You didn't do anything wrong.  There's no cure."  And some other things I don't remember because I was too busy being devastated.  After three separate people with advanced degrees tell you something's true, you've probably got to believe it.  So I went home and sobbed about the 62 I.Q. and wondered if I would have an adult son who would still be wearing diapers and not talking.

Joey gave us a scare.  He didn't talk until he was four years old and for a long time, I thought he was going to be non-verbal and never say the words every mother needs to hear:  I love you, Mom.  I wasn't sure if he would understand emotion, be able to read, have empathy for other human beings.  Joey knocks me flat every day when I realize that while yes, he has autism, he is the most amazing kid and the way he looks at things, while not the same as other children, is a quirky, unique, Joey way of looking at things.  I can really appreciate my life a lot more because I have Joey in mine.

What autism has done to my child is make him very literal.  He's obsessive about things.  He takes you at your word and you'd better not make a promise you don't intend to keep.  He has trouble processing things like multiple instructions, leading to the need to break things down step by step for him.  Sometimes you have to walk through a task with him.  He's got sensory integrative dysfunction, an associated disorder that goes along with autism, and what it means for him is that his diet is limited to cheese pizza and peanut butter toast.  There is no wavering from his diet.  He is literally afraid of trying new foods.  When I ask him to, you can see a shiver run all the way through him.

What autism has done for my child is to make him quirky, funny, verbal, rational, logical, willing to obey the rules and suffer the consequences if he doesn't, loving, and still cuddly at the age of twelve.  And it has not taken away that precious gift of hearing, "I love you, Mom."  Hearing those words from Joey is like winning the lottery and I get to hear them a lot.  Oh, and he loves to read and soaks up knowledge like a sponge.

I sometimes wonder now what the results would be if they gave him an I.Q. test today.  Obviously, any I.Q. test given to a non-verbal child should be immediately deemed "invalid," as the child has to be able to respond to the questions.  When Joey was tested, he was non-verbal.  Of course his score was low.  Now he can rattle off details to things that amaze me and his memory is astounding.  I wonder how he remembers the things he does and I wonder a lot how he thinks.  I would pay a lot of money to get inside his head for five minutes and poke around, just to understand a little more about how his amazing, bright, inquisitive little mind works.  Unfortunately, I don't have that ability, so I content myself with glimpses into his world through the things he says and the actions he takes.

I have no idea what the future holds for my youngest child, but I think I can relax and know that since he has exceeded every expectation ever made for him, there is no limit to what he can do.  Autism is not a death sentence and it is not, in many ways, a bad thing.  It makes him fun to be around, like when you watch him suddenly get the joke or the way he giggled for fifteen minutes after Justin hid around the corner from him and jumped out at him and said "boo!" the other day.  Joey is just Joey.

Sometimes I wonder if maybe autism isn't an evolutionary development. Why are we looking for a "cure" for this?  Looking for a "cure" implies that there is a disease.  In Joey, I don't see autism as a disease or a stumbling block or something that needs to be fixed.  He needs a little more help negotiating life's social scene than a "neurotypical" child, but don't a lot of us suffer from intense social phobias and shyness at parties?  How many anti-anxiety prescriptions do you suppose are written every year for just this reason?  From what my eighth grader tells me, all the kids that he sees interacting with Joey seem to like him.  And that, in essence, is Joey.  Different?  Yes.  Autistic?  Yes.  Is that a problem?  Not to me.  I think Joey is going to become something fantastic someday because of his autism.  It has a way of making him think "outside the box" (a term I can't stand, but which aptly applies here) that makes me believe that Joey could be a rocket scientist if he wants to be.

Sometimes I tell Joey, "I love you, Joey" just to hear those magic words back.  "I love you too, Mom."  Words the "experts" told me he would probably never say.  Words he says often and with a smile and a quick duck of his head.  If autism is "wrong," then I don't want to be "right".

Tuesday, January 11, 2011

Insomnia Again, Naturally

You know you have a sleep disorder when you find yourself sitting in the recliner watching Hoarders and Intervention on A&E, wondering why you're awake and the rest of the world is peacefully snoozing away.

I fall into the category of "people who worry."  I worry about everything.  To say I obsess would be a total understatement.  Every night, we do our pre-bed ritual - take the dog out, drug the dog into oblivion (haha), gather up our stuff, turn out the lights, do our bathroom things, change into whatever, and crawl into bed to read or watch tv.  Justin is usually ready for lights out within ten or fifteen minutes and I go along and turn out the lights - I'm game for anything!  I'll give sleep a shot!  And then I lie there for about 15 or 20 minutes while I wait to make sure he's definitely asleep while I obsess about whatever is bothering me.  And then I get back up again.

I read somewhere that if you suffer from insomnia, you should never lie awake in bed for longer than 20 minutes at a time, because you'll just start to frustrate yourself and wake yourself up even more.  The current thinking is that you should get up and do something boring, like playing cards, or reading a college chemistry textbook, until you start to get sleepy.  Then, and only then, go back and try again.  If you find yourself awake again, get up and repeat.

My usual plan of attack is to come down, turn on the some boring cable show, and sit in Justin's "official chair," (the aforementioned recliner) and wait for "sleepy" to come up and hit me in the back of the head.  While I'm waiting, I turn whatever it is that is currently bugging me over and over in my mind, worrying it like a dog with a bone, trying it from different angles, trying to figure out what I am doing that could cause a different outcome (because at midnight, aren't our imagined outcomes always the worst and not the best?)

Then there are those things you cannot change and are supposed to just accept and let go.  Not.  My.  Strong.  Point.  I can remember very little from my early childhood - one or two memories from about the age of 6 or 7 and then nothing much until about 7th or 8th grade.  But I can hold a grudge - man, can I hold a grudge.  And so there are times I will find myself worrying something that might be decades old, knowing there is absolutely nothing I can do about it now, but determined to keep myself awake with it.

I have recently contributed to my insomnia problem with a poor sleep schedule.  I go to bed, get back up, go back to bed, sometimes get awakened by the dog, more often by my aging bladder or aching muscles, sleep a couple of hours at a time, get up at 6:30 to get the kids off to school, and finally go back to bed for two really good hours of sleep from about 7:00 to 9:00 a.m.  Not the best habits, for sure.  And certainly not what they recommend when they are trying to get you onto a "sleep schedule" that will enable you to get 7-8 hours of uninterrupted, decent sleep.  But it has become about the only way I know how to do it.

Right now, I have a lot on my mind.  Which transfers into quite a bit of broken sleep.  But I find that I can live with the broken sleep, as long as it is getting made up for somewhere - like that two hour block in the morning.  I have taken to scheduling things for later in the day, when I am more awake and not expecting too much of myself before about 11:00 in the morning.

I can remember (a very early memory for me) of being about 6 years old and having been put to bed by my mother.  As I lay there, wide awake, I could hear sounds and conversation coming from the living room.  Sneaking out of bed in my little nightgown, I discovered my mother popping popcorn on the stove (this was back in the early 70's, so everything was done the old fashioned way).  Jackpot!.  There actually was a life going on after I went to bed!  There was a reason my brain was trying to keep me up.  Much to my parents' dismay, I am sure.  Sometime after that night, I again heard sounds and snuck out of bed, hoping for popcorn and a later bedtime again, and my mother reprovingly telling me she was rearranging hangers in the closet and to take my little self back where I belonged. 

As a parent, I always believed in early bedtimes for my own kids and, when they were small, this was fairly easy to accomplish.  But as they have grown and become adolescents, their bedtimes are quickly sliding through my fingers.  The older two pretty much set their own bedtimes and, as long as they are able to get themselves where they need to be without prodding on my part, I don't really have a problem with it.  Since I have so much trouble falling asleep, I sympathize with their internal clocks telling them night is day and day is night.  I still have some control over Joey, being only 12, but there are many nights I hear him turning pages by the light of his closet door or talking to himself because he has trouble falling asleep.  I see another insomniac in the making.

It seems like Justin is the only one of our family who has the circadian rhythm of sleep down.  He can go to bed at 10:00, get up at 6:00, and actually spend his day the way normal people do.  He can fall asleep just by closing his eyes - an ability I envy more than he'll ever understand.  I wonder if he realizes how great a skill he has and how wonderfully lucky he is to have it mastered.  Maybe I'll ask him tomorrow, after I finally get out of bed for the last time.

Friday, January 7, 2011

Beating the Bushes (and NOT how that sounds!)

Team JJ's Angels has raised $825 towards its goal of $15,000 for St. Baldrick's Foundation.  I want to thank those of our friends who have made donations.  How can you resist this sweet face?


Juliana was the bravest, most spirited, spunky, enchanting little girl we have ever had the pleasure of meeting and her untimely death from acute myeloid leukemia is a tragedy and a travesty.  There is no justice in this world when a beautiful three year old can be taken from her parents.

Please, please hit the following link and donate whatever you can spare to help us eradicate this monster of a disease:


http://www.stbaldricks.org/teams/mypage/teamid/68214

We will be eternally grateful to everyone who supports us in our mission to end childhood cancer.

Good news!  The local newspaper has shown an interest in our fundraising efforts due to the length of Justin's hair and the fact that he is a guy.  The features guy told me that they don't usually do stories of this nature because there are so many causes, but when a guy grows his hair out for five years and then has it shorn in honor of a beautiful little girl, they think there might just be a story there.  Hopefully, this will blow our fundraising efforts out of the water and we will exceed our $15,000 goal!

If you click on the link, please donate under Justin's name...after all, he is giving the most hair!

Wednesday, January 5, 2011

St. Baldrick's, March 27, 2011, Syracuse, NY






Here it is people!  Two feet of hair just begging to be shaved off.  On March 27, 2011, Team JJ's Angels, 13 members strong and growing, will shave off their hair to raise money for a cure for childhood cancer in Syracuse, New York.

Please go to www.StBaldricks.org and search for Justin Newton and pledge any amount of money you like.  Let's do what we can, in honor of Juliana LaMonica, to eradicate childhood cancer...not to mention seeing the top of Justin's head again. 

No parent should ever have to go through the loss that our dear friends did six months ago today.  Please say you'll help, even if it's $10.  Juliana was grace, beauty, and bravery in one small little package and her spirit lives on in the good that she inspired in people she knew and those she didn't.  The tragedy of her loss on July 5, 2010 brought out the spirit of giving and caring.  It doesn't make up for her passing, but maybe, just maybe through blood donations and events like St. Baldrick's, we can do something to keep this from happening to another family. 

I'll say it again.  Please help!

Tuesday, January 4, 2011

The Dog with the Dual Personality






Jackson, six months old


I've owned cats since I was six years old.  My first kitten, with the witty name of "Middy" (who lets a six year old name the pet?), came after long periods of begging and a failed try with a combination Great Dane/Black Lab named Rasputin who liked to eat rugs and furniture and pick my two year old brother up by the sweatshirt hood and shake him back and forth.  I think after the dog totally exhausted my parents, they probably figured a cat was a better investment.  Much less work and much less people intensive.  Rasputin ended up on a farm (no, really, he did go to a farm), where he was then later killed by a moving vehicle.  I always pictured him happily chasing rabbits and carrying large chunks of wood around in his huge mouth, much like he used to pilfer from our woodpile from our backyard in Minnesota.

I've stuck with cats most of my adult life, although I always thought that to be "complete" as a family, we needed a dog.  We've made several forays into dog ownership before Jackson (the golden retriever we now call our newest family member).  There was the beagle named Sophie we had for three days when I got it into my head that we really did need a dog and went to the shelter and found this rather forlorn looking animal.  Then I brought her home and realized that dogs actually need love and attention.  As I was not in much of a mental position to provide that to my own children at the time, back to the shelter she went.  I called later and was told she was placed with a good family.  There was Holly, a rambunctious, energetic, totally spastic border collie who liked to leap over the sectional sofa to sit on Justin's lap.  I'm pretty sure she lasted about three weeks before I just couldn't take it anymore.  You need a certain amount of energy to own a border collie and I don't have it.  And then there was Kelsey, the greyhound rescue who came to us mostly housebroken, but fearful, a neurotic mess that became more so with her entrance into a house with three (loud) young children and a mom who had no idea what to do with a dog.  The more I walked her, the more she peed in the living room.  I finally gave up and found a nice couple with no children to take her.  I found out later they loved her so much, they adopted another greyhound.  Everybody has their breed.

So, this past year, when I was thinking again that we needed to get a dog (for the kids, of course), I started researching what breeds might be compatible to our family and settled on the quintessential family dog - the golden retriever.  The book that Justin got me for Christmas about goldens sums up the breed nicely with a description of personality traits as:

...outgoing, friendly, playful and even tempered; they get along with pretty much everyone.  These friendly dogs are great with children of all ages.  Exercise is key to keeping this dog happy, healthy and out of trouble.  These dogs are very easily trained.  They excel in obedience work, as a guide dog and in activities such as hunting, search and rescue, and assistance work.


Which is about what I had gleaned from my internet research.  In fact, I had discovered that the training facility that is working with dogs for children with autism is using exclusively golden retrievers and labs as their assistance dogs.  I wasn't too keen on the idea of labs, having read Marley and Me, and decided that a golden was just the thing.  I had a fenced in yard and a nest that was becoming somewhat empty.  I needed something else furry in the house.

I found the dog through, of all things, Facebook.  Someone I knew had a Facebook "friend" who was trying to sell their golden retriever puppy.  The description said that they had gotten the puppy a week earlier and then promptly discovered that their son was allergic (are any alarm bells going off in your head?), so they would unfortunately have to find him a new home.  I had, not five minutes earlier, been looking at a golden retriever breeder's site for puppies and could not believe the luck of finding a nine week old puppy, locally, pure bred, golden retriever for sale and for sale right away.

I forwarded the link to Justin, we went, we looked, we fell in love with this nine week old ball of fluff, and we brought him home.  At the time, he weighed all of fourteen pounds and I, not being a "dog" person, had absolutely no idea (even after my research) that goldens are actually considered in the large breed category.

We are, five months later, now the owners of an approximately 70 pound garbage disposal who has a split personality.  I mean, this dog has issues.  I have been baffled at the difference between the descriptions I had read online about this gentle, made for human, breed of dog and the dog that is now panting on the floor behind me.  I started to suspect that the previous dog's owner's son was not allergic at all.  What I suspect happened is that she got him home and discovered that even at the ten pounds he weighed in at when they got him, he was simply too much for her to handle.  When we visited, we were regaled with tales of the walks they had taken and how much he loved other dogs and people and how friendly he was.  False advertising, my friends.

What this dog is, in actuality, is a neurotic lovable mess.  We endured the puppy teething we had been warned about by the vet and even brought a personal trainer to the house to teach me how to deal with bad behaviors.  We were encouraged to begin "crate training," which we had been trying to do with little success.  What I finally realized was that Jack actually hates his crate.  It's a phobia.

As the dog grew, I knew that continuous training was needed.  Justin, being the tolerant dog person that he is, assumed many of the chores that go along with raising a puppy, including walking the dog.  When I would try to walk him, he would pull so hard at the leash that it would raise welts on my hands.  Then there came the day when he pulled me down the snowy yard, trying feverishly to get to our next door neighbors, and I slipped and fell on the ice.  Hard.  I realized that I could no longer walk this animal by myself safely.

It's lucky for Jack that I fell in love with him and that he's still cute, because I swear this dog has multiple personality disorder.  He is one dog in the house and a completely different dog the minute we step out that front door.  I was lucky enough to discover a harness at Petco and got the large breed size.  That helped immensely with my being able to walk him without him pulling me down the sidewalk, but he has now begun a whole new reign of terror. 

Being a dog, he believes that everything he sees is edible.  Trash.  Pine Cones.  The "leavings" of other dogs.  (Ewww.)  His latest thing is to pick up something I know won't be good for his intestines and, when I pry it out of his mouth, he turns, jumps on me, and grabs my arm between his now quite massive jaws.  Not hard enough to hurt me and obviously not meaning to be malicious.  He's trying to determine who's boss in this relationship.  But this is a dog that weighs at least 70 pounds now and I'm not a very large woman.  I feel lucky that it is winter and there is a coat sleeve between me and this dog's teeth.  After being jumped several times on our last couple of walks, I was finally convinced that I either needed to figure out a way to train this dog or stop walking him.  The harness was helping, but it wasn't enough to keep him from overpowering me in a revenge move for taking away a piece of plastic that would bind his intestines, requiring the need for surgery.  I now walk him with leash in one hand and a treat in the other on the off chance that we see, oh, a bird, a person, God forbid, another dog.  Then all bets are off.

This dog has major psychological issues.  He's freaked out by everything.  We have gotten lucky in that he is no longer chewing or destroying anything in the house and we can safely leave him out all night without worrying about coming down to a scene from Turner and Hooch, but if he sees any movement outside or hears any noise (a dog barking, fireworks, thunder), he will bark feverishly and loudly enough to wake the neighbors down the street.  From inside.  New Year's Eve was a nightmare.  The fireworks started in the neighborhood around 11:30 and continued for about an hour.  The dog was so freaked out, he was shaking as he barked frantically at each explosion.  I actually felt bad for him, when I realized that he wasn't doing it to irritate me.  He really was upset by the noise.

What we have, I believe, is the Sybil or Eve of golden retrievers.  On the one hand, he is smart and trainable and lovable.  He has learned sit, wait, down, treat, water, go lay down.  I've taught him to fetch (do you actually teach a golden to fetch or is it ingrained in his blood?) and to go find the toy.  I should put a sign around his neck saying "will work for food."  On the other hand, there is the dog that freaks out at the slightest movement outside of the house, lunges for the people and animals he encounters on our walks, and barks frantically at the birds in the backyard and the garbage bag that got caught in the upper limbs of our maple tree in the last wind storm.  When the Christmas tree came down, I had Justin make a run to Lowe's to replace the dining room curtains Jack had torn so that he would not be able to see out that window at night and freak out if something moved.  Yesterday, one of the cats was behind the curtains and it was as if Jack didn't know who Max was.  He ran back and forth on the dog side of the baby gate we put up, barking frantically at the movement of the curtains.

I placed a call to our vet on Monday morning, a very kind woman who has been coaching me through this experience, and she expressed what I already knew.  Our dog needs doggie prozac.  He's a dog with an anxiety disorder or a personality disorder or some kind of mental disorder.  I finally went back to the AKC papers today that came in the folder the previous owner gave us with the dog and discovered, much to my horror, that his father and mother were actually brother and sister.  Are you freaking kidding me????  That's illegal for humans.  Why would you do it with dogs?  If I could get my hands on whoever bred this dog, I would slap her.  There's no listing anywhere online for her, no phone number, no address.  I should have been a little more thorough in checking his pedigree while we were busy falling in love with the ball of fluff, because he's now our dog and I could in no way break the kids' hearts by turning him over to a rescue or even a shelter that might euthanize him.  The thought is too much for me to take.

So, for now, we are training, training, training, and waiting for the vet to arrive with a prescription that will hopefully assist Jack with his anxiety, phobia riddled brain, bringing him somewhat back to what could be described as a "normal" puppy.  Oh...and it's definitely time that this dog got fixed.  I hear that helps too.

Monday, January 3, 2011

St. Baldrick's Shave Your Head for Cancer Research


 Portrait by Camille Nakai

In March, Justin and I will travel to Syracuse, NY to attend the St. Baldrick's shave your head for childhood cancer research event being put together by our friends, Mike and Christine LaMonica.  Justin will be shaving his head in honor of three year old Juliana LaMonica, who passed away in July of last year from acute myeloid leukemia.  No parent should EVER have to go through what Mike and Christine did.  Hopefully, these events will help raise enough money to eradicate childhood cancer.  They are the second biggest money raisers for research in this area, behind only the US government.  So far, Mike's team has 13 volunteers to get their heads shaved, including one woman.

Here is information directly from the St. Baldrick's Foundation website:

Worldwide, 160,000 children are diagnosed with cancer each year and cancer is the leading cause of death by disease among children in the United States. With only 3 percent of all federal cancer research funding dedicated to pediatric cancer research, St. Baldrick’s grant awards are critical to continue the battle against this devastating disease.

Justin has been growing his hair since we moved to Winchester in 2005.  At last measure, he had 22" or a little more to give to Locks of Love, the organization that makes wigs for chemo patients.  After he has the ponytail cut off, he will then have his head shaved.  I hope to get the local newspaper to do a human interest story as soon as we have details and we might possibly even go higher than what's hoped for below.



We are still waiting on specific details for the event, but here is what we are going to try to do to raise $2,850 for the charity in March (and thanks to my old high school friend who has offered the first $100 pledge for level 3):
 
Three levels of donations for Justin's new hair cut. Try to get people at each level... and get Justin to commit to the following:

Level 1: Ask 10 people to pledge $10 each if Justin will cut the ponytail off. Pretty simple, 100 bucks to charity.

Level 2: Have 15 people pledge $50 each if he also shaves the top, but leaves some on the sides and back so it looks like "male pattern baldness". Kinda funny, 750 bucks to charity.

Level 3: Have 20 people pledge $100 each if he does the "male pattern baldness" thing, but then keeps one side of it long to create the "comb over". Hilarious, 2000 bucks to charity!!!!! All for a good cause.

We would need to have a before and after photo on FB. He can get a real hair cut after the FB photo, so he can go back to work with dignity.

Will anyone else match my Level 3 donation????   Justin are you up to raising two grand for charity?

Justin is definitely up for raising the $2,000.  In fact, when I went back and counted it up, my friend's "levels" would actually net $2,850 if we are successful!  I will be posting new information as the event gets more nailed down.  If the idea of seeing Justin with a comb-over "tickles" your fancy, please pass the event information along to your friends and hopefully some of you will commit to a pledge. Could we even go viral with this?  You can contact me through email at CNewton724 at gmail.com or through my FB page.  There will be a photographer there to display the three "levels" of shearing, along with the completely bald look at the end.  We will be getting to see Justin's head again!  (And none of this has anything to do with my jealousy over his curly hair, I swear!)

More details to come...