January 4th, 2013

I’m Sorry For…

Just to lighten it up, I thought I’d post a funny “apology template” my friend found for me.  If you have been a faithful reader, you know about our struggles with Emma’s past school.  You can also get a refresher here, here, or here.  And maybe here, where it kind of snowballed.

In the (slim) chance that an IEP team member might apologize (because, you know, if they apologize they’re admitting fault- heaven forbid), here is a trusty template that said IEP team member can use for their reference.  Terri Mauro wrote some hilarious “all purpose apology templates” and certainly this one fits the bill.

If you find yourself in need of an apology, Terri’s templates offer 3 options for an apology that will:

  1. is sincere or at least looks that way
  2. lets you keep a little street cred
  3. tells the cold hard truth

This reprint was found at Wrights Law blog.

IEP Team Member Apology Template for Not Knowing It All After All

My Personal Apology
 (Pick one from each group of choices)

I understand that your child has

  • triumphed over low expectations.
  • performed in a way not supported by the data.
  • been successful, though that sort of thing is really in the eye of the beholder, isn’t it?

I am, of course,

  • delighted to hear that.
  • going to note that in the file.
  • exceedingly skeptical.

Your child deserves

  • our praise and pride.
  • the benefit of the doubt.
  • exactly what was found to be appropriate under the circumstances.

If it seems that I have been less than supportive, please realize that

  • I have a large caseload.
  • I’ve learned not to get my hopes up.
  • you are very perceptive.

I will do everything that

  • I can
  • I’m instructed to by my administrator
  • you require me to by court order

to make it up to you and ensure that you are treated with

  • respect and collaboration
  • carefully vetted civility
  • sarcasm you can’t see through quite so easily

in the future. Please be assured that we at this school

  • want every child to succeed,
  • want to stay out of due process,
  • hold you in as much contempt as you hold us,

and accept my sincere apology for ever doubting

  • your child’s ability
  • your belief in your child’s ability
  • your ability to make a fuss.

Enjoy!

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January 1st, 2013

Feels Like A Break Up

One can perhaps assume that with a child with special needs, can often come with many medications.  Many.  Emma is now taking 6 medications by mouth, and one shot at night.  With her dosages, that amounts to 7 pills in the morning, one at lunchtime, and 7 at night.  That being said, it’s not hard to see why I’m so close with my pharmacists. I’m in there at least once a week, and sometimes twice a week.  They know me by name, of course.

To give you a little history, one of the owners is neighbors with my parents.  Meaning I also grew up with him across the street.  In fact, his son is one of my closest friends.  I call him “the brother I never had” (with the joke being that I have a brother).  So it was perfect that his pharmacy was so close to our house.  And it was natural for us to go there when Emma first got diagnosed.  I have his home phone number (one of those phone numbers I’ll never not know), his cell phone, and wife’s email.  And he always told me, with his Sicilian accent, “Jessie, you call me anytime you need me.”  As it turns out, there was one time I did need him when they weren’t open.  I call it the Great Medication Misplacement of 2012.  I somehow misplaced two of Emma’s medications, and I still can’t find them.  If you know me, this is not something that is in my nature.  I’m extremely organized, and Type A.  Anyway, I had to call him on Sunday morning to see if he could meet me at the pharmacy as Emma and I were headed to California that day.  And these medications were kind of important.  Of course I ended up waking both of them up, but he was more than happy to meet me there and give me the medications I needed to last through my trip.  Every visit we had ended with “how are the kids and Brett doing?” It’s the kind of thing that your pharmacist would do in the “days of yore”.

There’s another owner I’ve become close with.  N is more like a brother, as opposed to V who is more like a father figure.  Anyway, we’ve become buddies to the point where we can both dole out and receive jabs in good spirit.  We have a natural and easy rapport, not something most people typically have with their pharmacist.  Going into the pharmacy as much as I did was never a chore.  It was something I looked forward to, like seeing friends and catching up.  Joking about hanging out there and having Happy Hour in the waiting area.  That sort of thing.

That being said, I was really saddened by the news that they were closing their doors.  They have another business that caters to the nursing homes around the valley.  It was booming and the pharmacy had taken more of a back seat.  My friend, who used to work there (see? I’m friends with all of them!) texted me to let me know that last Thursday was there last day.  I was in shock!  I had just seen V last week, and emailed with N over the weekend.  No one mentioned anything! I immediately typed an email to N as I was standing in the lobby of the Arizona Science Center. “You guys are closing?!?!”  Being the good guy that he is, he immediately responded with a “yes, I was going to call you today.”  I told N, “you can’t make me go to CVS with all the commoners. I’m not common.”  They don’t even know my name over there.  They don’t know Emma.

So on their last day right before closing, I went in and picked up my last two prescriptions.  It was eerily quiet.  I chatted with N for about 20 minutes.  It was interesting what he told me.  He mentioned he remembered the first customer that ever walked through their door.  And he had wondered who the last customer was going to be.  It was weird.  It totally felt like a break up.  The last time I felt like this was when my bootcamp instructor of 2 years told us that he wasn’t going to be training us anymore.  We had become good friends and we did stay friends, even traveling to Florida for his wedding later on.

But for someone like me who depends on a pharmacy to take care of my daughter’s growing needs (and my beloved zoloft prescription), to have them close their doors feels like a loss.  I know we’ll stay connected.  Like I said, V lives across the street from my parents.  And when we move into their house, he’ll be stuck with us as neighbors (something I’m so excited for!).  But a trip to the pharmacy is not something I’ll look forward to anymore.  I don’t want to get automated calls from CVS.  I don’t want to go through their drive- through.  I don’t want to be just another customer.

I have a feeling that this grey cloud will be with me for awhile.  The best way I can explain it is that it feels like a break up.  And my heart is sad.

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December 31st, 2012

Here Comes 2013!

As another year comes to a close, I can’t help but think about the year ahead.  And what I know will be in store for us.  And what I hope will be in store for us.

I know we will be getting a seizure alert dog for Emma.  We have done amazingly well on our fundraising.  My goal, when we started, is to have our $9000 raised by March 1st.  Well, it’s December 31st, and we’ve raised $13,920.96.  Yes, you read that right.  $13,920.96.  In 1 month.  The generosity shown to me by our family, friends, and even strangers, is remarkable and humbling.  We have $9000 going for the dog, and the remainder will be used for the following: travel expenses (2 more trips to CA in our future), vet bills for the new dog, a new kennel/crate, and hopefully medical insurance for him.  And if we still have money coming in, it will go right back to Pawsitive Service Dog Solutions.  Brett and I are so blown away by the response we’ve had to our request for help.  Thank you, from the bottom of our hearts, for all of your contributions.  They truly mean the world to us.

We are hoping for another big change in 2013.  We are hoping to move closer to our parents and Brett’s work.  Actually, we’re hoping to buy my parents house from them.  It’s the house my brother and I grew up in.  It’s in a wonderful neighborhood, close to everything, and has plenty of potential to add on.  We attempted to move last summer, but it wasn’t in the cards for us.  Hopefully we’ll have better luck this spring.  The market is finally turning around!

Finally, as always, I hope for good health for my family.  I’m wishing for fewer seizures for Emma, and perhaps this year no surgeries!  I do know that whatever obstacles we face, Brett and I will handle them with the best of our ability.

To my faithful readers, Happy New Year!!

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December 27th, 2012

Dear Santa

A few weeks ago I posted this picture on my Facebook Timeline:

In 20 days can you give us a seizure dog please Santa?

Mason wrote this note to Santa on December 5th, put it in an envelope, and left it for our elf, Rock, to bring back to Santa.  Broke our heart.  We talked with Mason about how Santa told Rock to tell us that he couldn’t give us a seizure dog for Christmas because they took a long time to train.  But that Santa would work on it.

Fast forward to our trip to Napa.  My cousin Mo suggested that Santa bring us a stuffed yellow lab for Christmas, as a reminder to us that he is working on our real dog.  What a wonderful idea!

On Christmas morning, this little guy was by our tree:

Along with this cutie came a note addressed to our family.  It was from Santa, and he said that he was working on having a seizure dog trained for us.  And until he could make our dog available, this stuffed dog was a reminder of what was to come.

We named him Rylee!

This was, by far, the sweetest gift the kids got this year.  Thank you, Mo, for the idea!  We can’t wait for our real seizure dog this summer!

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December 13th, 2012

Generosity

Brett and I are incredibly blown away by the generosity we have been shown by friends, family, and even strangers.  I am so happy to announce that we have raised over half of our initial goal of $9000.  We are so close to our goal we can touch it!

I haven’t updated on my blog since we returned home from our trip to visit Pawsitive Service Dog Solutions.  We had a wonderful time getting to know Carmel, her husband Bob, and VP Patty.  They were all so wonderful and hospitable to Emma and me.  We spent quite a bit of time together while they answered my questions and filled me in on everything I needed to know.  I handed them an envelope with over $3000 we had already raised.  We also got to meet 2 dogs…Chaz and Lassen.  Both are beautiful dogs.  Chaz actually belongs to the VP’s grandson as an autism dog.  He is a sweet and very mellow dog, which is perfect for his handler.  The little boy who has him has a history of bolting (running away) and Chaz has literally saved his life a few times. It’s easy to see how one could fall in love with Chaz.

Chaz

Lassen is being trained right now to work with a boy who has autism.   He’s a gorgeous black lab who has a lot of energy and love to give.  He was very interested in Emma, but his enthusiasm intimidated her a bit.  I was amazed at how he would continuously sniff the cheese ball that had been left on the ground, but never once did he eat it.  These dogs are trained so well!

Lassen

I was hoping we might be able to meet some of the dogs available for advanced training, but unfortunately they’re scattered all around the Sacramento area.  Additionally, their personalities haven’t quite developed yet, and so it would almost be pointless to try and match up a dog for Emma.  Both Carmel and I agreed that Emma would benefit from a dog whose temperament is a little more centered.  And she is thinking that she might have a dog that fits the bill.  While their temperaments are still maturing, she sees some potential in one dog.  And that just so happens to be Rylee!

Is Rylee not the cutest?

He’s being raised a by a mother/son team and Carmel had many positive things to say about them! I am excited to continue on our journey and can’t wait for the day when we can meet the dog who will, undoubtedly, change Emma’s life.

Rylee, a little more grown up!

Thank you to EVERYONE who has donated to our cause.  We couldn’t be more grateful for your kindness and generosity.  You are truly blessings in our lives for contributing to Emma’s quality of life. Thank you.

We still have a few hours left of our online auction of a beautiful painting created and donated by my friend, Quinn.  If you’re interested, please comment on this post or on Jumping Waves Facebook Page!

The bidding is up to $500!

**Disclaimer: Rylee has not been confirmed as “Emma’s dog”.  Carmel was making an educated guess!  We will find out in a few months when we get to travel back to California!

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December 6th, 2012

Auction for an Artist’s Original

A wonderful friend of mine, Quinn, has graciously donated an original abstract oil painting to help raise money for Emma’s seizure alert dog.  Quinn, thank you for your time and thoughtfulness that went into this gorgeous piece of art!  I absolutely love it and I’d love to have it hanging in my home!

Here are some pictures of Quinn’s painting.

Quinn Tompkins, artist

Original artwork by Quinn Tompkins
Painting measures 48″ X 60″

To bid on Facebook, you can go to my page and bid in the comment section here.  If you’re not on Facebook, you can email me at jessica {at} jumpingwaves {dot} com.  The generosity show to us by others is so humbling.  We are so appreciative of all of the donations, notes, tweets, texts that have been sent our way.  And thank you for sharing our story.  We are so touched by all of it.  Thank you.

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December 5th, 2012

Nighttime Peace Of Mind

While I was searching and searching for our perfect organization, I came across an organization that helps families with children suffering from seizures.  This couple, Julie and Doug Hutchinson, is amazing. It is their mission to help children and young adults and keep their parents from experiencing what they had to experience.  They have created the Chelsea Hutchinson Foundation.

Their daughter, Chelsea, grew up healthy and happy.  At age 11 she started having occasional seizures.  Sadly and very unexpectedly, she passed away from a seizure while sleeping.  She was 16 years old.  Her parents hadn’t ever heard of Sudden Unexpected Death in Epilepsy (SUDEP).  They created this foundation in honor of their beautiful daughter, Chelsea.

After I read their story and spent time on the website, I emailed Julie to tell her of my plans to raise money for a seizure alert dog for Emma.  She responded to me that night.  We have been communicating back and forth ever since.  She is an amazing person whom I hope to meet one day.

She immediately told me that we qualified for a grant to help with the purchase of our seizure alert dog.  And not only that, but she would send out an EmFit monitor to help give us peace of mind until we had Emma’s dog at home with us.  An EmFit monitor is the latest technology that helps give parents peace of mind during those night time hours.  It is the thinnest piece of plastic that is simply placed under the mattress on the bed.  The monitor will detect abnormal movement and, after a certain length of time, emit an alarm to alert the parents that their child is having a seizure.

This monitor is placed under the mattress.

We got our monitor yesterday and I plugged it in this morning.  Tonight will be a test to see if it goes off at all.  This is amazing in so many ways.  We are so thankful for their kindness and generosity.  The least I can do is write about them and let people know how wonderful the Chelsea Hutchinson Foundation is.  Please take a few minutes and read Chelsea’s Story and read their Goals.  If you’re looking for another worthy foundation to donate to this holiday season, they should be at the top of the list.

Thank you, Julie and Doug, for the kindness and generosity you have shown my family.  Families who have children suffering from epilepsy are so blessed to have an organization such as yours.

 

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December 2nd, 2012

More About PSDS

I found Pawsitive Service Dog Solutions (PSDS) mid-search.  And I glossed over it initially because I didn’t see “seizure alert dog” on the website.  I didn’t look hard enough! They were literally at the bottom of my list, but I am glad I came back to them. They are located in  Northern California, which is doable for us, and we have family in the area, too.  I called the phone number and left a message on a Wednesday morning.  I didn’t hear back by Thursday morning so I emailed the general email.  I still didn’t hear back, and I was beginning to get discouraged again.  Finally I got a phone call from Carmel, the president.  She had been traveling, which explains why I didn’t get a call back.

Our first conversation was short…I was watching my friends baby- who wanted all my attention to herself- and Carmel was on a quick layover.  We decided to chat the next day.  It gave me a chance to revise and add to my list of questions.  When we did chat, she answered my questions without hesitation.  Part of my original concern was that the organization is so new.  Many of the service dog orgs that I’ve looked at have been around 10+ years.  Because PSDS is so new, I was unable to dig up any dirt (good or bad) online.  I asked for a referral and she immediately gave me the phone number of someone I could chat with.  I immediately called the referral and spoke with her a few days later.  We had a nice long conversation and she couldn’t say enough about PSDS, Carmel, or the dog that her grandson had received.  I was encouraged as I was actually speaking with a client.  I also, through some FB sleuthing of my own, was able to track down a family in Florida who just received their service dog this week.  Since they didn’t have the dog when we spoke, I asked about the process with PSDS and Carmel, any likes and dislikes.  And she had no dislikes. 2 for 2!

Could Cody be Emma’s Forever Friend?

I think I spoke with Carmel 2 more times after that, and then I sent over the application and a check for $25 (processing fee).  We both left the last conversation feeling very good about the rapport we had with each other.  She said the same thing as me, “My gut instinct tells me that this is going to be a good match.”  Listen to your instincts!

Because I felt like it was in the bag, I bit the bullet and started writing a donation letter.  I knew that was going to be the first way I was going to raise money.  Thanks to a close friend (who deserves most of the credit), I was able to draft the letter you read in the last post.  I’ve already begun to brainstorm ideas for fundraising as well.  Truth is, before we even knew who we were getting the dog from, I was thinking of ways to raise money.

Maybe Hank is the one?

Until next Sunday, when Emma and I fly over to meet Carmel, I will spend time getting our word out.  If you could help me by sharing our story, I’d be so grateful.  If you are looking for a good cause to donate towards, we’d appreciate your consideration!  You can click on the “donate” button on the bottom left column, if you don’t need a receipt.  If you do need a receipt, leave a comment here and I can email you with my address and directions.

Have you liked Jumping Waves on Facebook yet?

You might as well head over to Pawsitive Service Dog Solutions on Facebook and like them too!

 

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December 1st, 2012

Open Letter To Readers

Photograph courtesy of Keith Pitts Photography

December, 2012

Dear Readers of Jumping Waves,

If you have been a loyal reader of Jumping Waves, you will know of the challenges that my daughter, Emma faces. Every day, every week is like a roller coaster for her. Recently, our biggest challenge has been controlling her seizures.  She has between one and three a day; and those are the ones we see. During a recent hospital stay, we witnessed six in the middle of the night alone.
If anyone has ever seen a seizure, you can attest to the fear that it brings you. Emma’s seizures are usually short and presented with head drops, involuntary hand movements, shaking, and dilation of pupils. She’s also stopped breathing, has lost bladder control, and has experienced imbalance, twitching and tremors. Most recently Emma had her longest seizure ever. It started like every other seizure, but this one lasted two minutes. This was, by far, the longest seizure she’s ever had and it became quickly evident that it was significant; a grand-mal seizure.  She immediately began shaking, craning her neck over her left shoulder, twitching, blinking and had uncontrollable drooling.  There were intermittent times where Emma began involuntarily holding her breath; her lips were turning blue. Two minutes felt like an eternity as I tried to bring her out of the seizure.  I suddenly had tunnel vision, blocking out everything going on around me, barely focusing enough to give Mason a kiss as he got on the bus. I have not been that scared for her since she spent a week in the intensive care unit at Phoenix Children’s Hospital at age two.
A few weeks ago, I started to research service dogs, and more specifically seizure alert dogs. These animals are trained to detect when a seizure is emerging, via a smell the child emits. The dog then alerts the nearest adult by barking, whining, licking, etc. They are trained to comfort the child as well.
After conducting a great deal of research, Brett and I are confident the organization Pawsitive Service Dog Solutions can provide the best service dog tailored to meet Emma’s needs. The training, which takes four to six months, is nothing short of miraculous. And the cost that goes into training a dog is substantial. Brett and I have put a down payment on a dog. However, we need some assistance for the balance. This is where I ask for your help. The purchase price for the dog is roughly $9,000, of which we have a sizable portion secured. Would you consider donating to help Emma receive this life-changing service dog? You can email me at jessica@jumpingwaves.com and I will email you my address.  I also have a donate link on the bottom left of this blog. All donations made directly to Pawsitive Service Dog Solutions are 100% tax deductible.

Thank you for considering a donation on Emma’s behalf. The Crozier Family greatly appreciates it!

Kind Regards,

Jessica Crozier

 

Photographs courtesy of Keith Pitts Photography

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November 29th, 2012

Finding An Organization

It’s no easy feat.  Sadly, I thought it would be.  After I quickly fell in love with the first organization I interviewed, my friend suggested I slow down, take a step back, and do a little more research.  I am glad she did.  I uncovered some less-than-stellar reviews online, even a review from a former employee.  Yes, I understand you can’t please everyone.  But I started really listening to what my gut instinct was telling me.  The first place I fell in love with seemed great.  But during the second conversation with the owner, he asked me if Brett was an absentee husband…not giving me the support I needed.  Um, no.  I told him that I have the privilege of staying home and so it was my job to be the one doing the research and looking into this process.  He was there to support me and offer advice, but really Brett let’s me take charge.  Not to mention (I told him all this), that Brett went to every doctor’s appointment for Emma, if I needed him to go, and always spent the night during her hospital stays.  So absentee?  No.  Red flag #1.  On the following phone conversation a few days later, I heard how he spoke to the dogs and his employees.  I wasn’t very thrilled.  I’m not saying I don’t yell at my dogs on occasion, but I definitely don’t do it while on the phone with a prospective client.

I talked with another owner in the midwest.  She lacked a lot of personality.  I understand she’s a dog trainer first and foremost, but when you’re talking to a potential customer, you need to kick it up a notch.  I felt like I was wasting her time even talking to her and asking the questions I had.  I also found some off-putting reviews online.

More research online.  More phone conversations. More scouring of the websites for these organizations.  Hours and hours.  I finally found our organization after multiple phone conversations and even talking to current/past clients on the phone and email.  And my instinct told me this was the organization for us.  I had good rapport with the owner.  I never felt like I was wasting her time.  She answered my questions honestly and without hesitation.  One of my biggest concerns was that this was a very new organization.  I couldn’t find any reviews online, negative or positive.  She was more than happy to give me the phone number of one of their first placements and I was happy to take it and give them a call.

Here are some questions to consider asking when interviewing prospective organizations that train service dogs.

  • Do you train “_____________” dogs?  For us, I was specifically looking for a seizure alert dog.
  • What is the process for applying for a dog?
  • What is the process for raising money for the dog?  How much does the dog cost?
  • Do we take over ownership of the dog after we are trained? (many places still “own” the dog even though the dog is living with you)
  • What is the training process for the dog?
  • What is the training process for the family? How long is it? (for our organization, it’s 5-7 days that we are committed to being there, training with the dog)
  • What kind of fundraising support do you offer?
  • Is there a payment plan in place? (for our organization, we pay roughly $1,000 a month)
  • What if the dog needs further training in the future?
  • Can I speak with past clients?
  • What breeds of dogs do you work with?
  • Where do you get your dogs from?  (you need to know information about the breeder.  For example, how many litters will the female have? What are the conditions like where they are bred? etc.)
  • How long is the waiting list?  Whats the average length of time upon first payment (deposit) and receiving the dog? (some organizations have waiting lists that are years long, and that’s due to the fact that they don’t charge money for their dogs. Personally we’d rather raise the money and get our dog sooner)
  • Can we have another pet in the home? (we made it clear that we have 2 other dogs, both who don’t have an aggressive bone in their body)
  • How do you match a dog with the client? (many will do an extensive phone interview or Skype. It was important to us that they meet Emma so they really get to know her and her needs)
  • What are the training methods you use for the dogs?
  • What age with the dog be when we receive him/her?
  • Do you offer a “doodle mix” for those clients with allergies to dogs? (Castle is a golden doodle)

This is only a few of the questions I remember asking.  I will add onto the list as more come to my mind.  Unfortunately I already threw out the interview list I kept in my purse in case we had phone conversations out and about.

Coming up…the organization we chose for Emma!

 

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