Disney At Christmas Time!

Last week, my family got back from our amazing vacation in Walt Disney World.  Although we've been to "The World" a bunch of times, this trip was full of firsts and great times.

The 10 of us enjoying Hollywood Studios

My husband, Jason, our kids, Nathan and Drew, and my parents and I left the day after Thanksgiving and stayed for 10 days.  We stayed at Port Orleans Riverside, a moderate resort on Disney property. My aunt and uncle who live in Florida, my cousin Katie who lives in upstate New York- near my parents- and my cousin, Samantha, who lives in Boston all met us for 4 days of the trip!  Which made it even more special  We stayed in a Royal room, which is decorated with Disney princess touches- which I loved!  The bathroom faucets looked like the Genie's lamp from Aladdin, the bench looked like the "dog bench" from Beauty and the Beast, there were pictures of princes and princess and a letter from Tiana from The Princess and the Frog welcoming us as her guest.

This was our first time visiting during the holiday season.  Christmas is my favorite time of year, and Walt Disney World is my favorite place, so it made the trip even more magical!  We got to see the Osbourne Family Specatacle of Dancing Lights before it leaves Hollywood Studios for good, we also went to Mickey's Very Merry Christmas Party at the Magic Kingom, the Candlelight Processional at Epcot, and went on a one horse open sleigh ride to look at the Christmas lights at Fort Wilderness!  (It was actually a horse and buggy, but they make it look like a sleigh- Florida, you know!)

My mom, Nathan, my 2 cousins and I loved
all the gluten free food we got to eat!

We also ate.. a lot!  We returned to some of our favorite restaurants, and tried some for the first time.  I've said it before and it's still true, I love eating at Walt Disney World.  My mother, Nathan and I have celiac disease, so we can't eat gluten.  Disney treats people with special diets like people!  It doesn't matter if you're eating at a sit down restaurant, or a counter service restaurant, they will cook you some delicious food and not make you feel like a second class citizen.

At the end of the Family Magic Tour, we got to meet
talking Mickey Mouse!

This was Nathan and Drew's 6th trip to Walt Disney World.  We wanted to do something different.  We did the Family Magic Tour at the Magic Kingdom.  It was amazing!  One of the highlights of the trip.  Drew also played the Agent P game at Epcot- he loved it!

I am going to fill you in on all of this!  Stay tuned for more blog posts- on the food, the holidays, the Family Magic Tour and Agent P game, also how Nathan did.  Walt Disney World is Nathan's favorite place- just like his mom!  But I took this for granted.  I pushed him too hard on the first day and that kind of spoiled the whole next day for him and made some things difficult for the rest of the trip.  I'll explain that and what I would do differently if I could.

Stay tuned!

Happy Thanksgiving

I want to wish all my family, friends, and readers a very Happy Thanksgiving.  It's been a tough few weeks.  The attacks in Paris, the downing of a Russian jet and other terror attacks around the world have reminded us how vulnerable we still are and that terrorists still want to attack our way of life.  It's also been a reminder of why we celebrate this holiday.  We will not give in to the terrorist, we will not cower in fear, we will live our lives, and we will be thankful for all the gifts in our lives.

For my family, Thanksgiving is a little weird this year.  We are so close to our Walt Disney World holiday vacation that we've been planning for over a year!  We actually leave tomorrow.  So, today, I am working, Jason and the kids are having dinner at our friends' house, and my parents are hanging out at home- cleaning, decorating for Christmas and making final preparations for our trip.  We are looking forward to being together and celebrating an early Christmas with my aunt, uncle and two cousins, but today is still weird to not be celebrating on Thanksgiving.  But we are all still thankful for so many wonderful gifts God has blessed us with.  (I'm not going to bore you with the list of things we're thankful for- believe me, it's long!)

I'm sorry I disappeared for a little bit- I was just really busy getting ready for the trip and preparing for Christmas (when we get back there will be only 2 and a half weeks until Christmas!!!) and after everything that was going on the world and covering crazy news at work, I just needed a break.  Get ready for some major trip reports, including traveling with autism, traveling with large groups, eating gluten free, and more!  I can't even count how many times we've been to Walt Disney World, but this time, we are trying a lot of new things and it's our first time going while everything is decorated for Christmas.  This trip is combining three of my favorite things- Christmas, Disney and family- so I'm sure I'll have a lot to tell you about!

Happy Thanksgiving!

Expect the Unexpected

Every school year, it takes Nathan about 6 weeks to get used to the routine at school.  The first 6 weeks are usually difficult, but like a switch at 6 weeks everything gets much better.  It's been like that since preschool.  Like many people with autism, transitions have always been difficult for Nathan.

11 weeks after school started, Nathan has
dealt with a lot of changes, and more are on the way

This year was no different.  The first six weeks were hard.  Officially, he has the same teacher he has last year, but she's been out on maternity leave since school started.  He had a fill in teacher for the first nine weeks of school.  She agreed, that after the first six weeks, everything turned around and did much better academically, behaviorally and socially.

Nathan's teacher comes back next Monday.  But the relief teacher who filled in left a week ago.  So last week and this week, the teacher's assistant is substituting.  Nathan loves him, but he still had quite a few outbursts last week.  Almost every day he cursed at and hit his aide.  We even promised that if he made good choices and didn't act out, we would download an app he's been wanting.  He didn't get the reward.

On Friday, I found out his aide got another job, her last day is this Friday.  So next week, his old teacher will be returning and he will be getting a new aide.  I tried to talk to him about it his aide leaving all weekend.  He is not happy.  He doesn't really want to hear about it or talk about it.

This would be difficult for any class to handle, especially a special education class.  No one is to blame, it's just life.  Sometimes, you have to expect the unexpected.  But you can't tell a child with special needs, "Well, that's life, get over it."

So what can we do?  We are talking to him about it the changes ahead of time.  We are giving him strategies to deal with anxiety when he feels it.  Also, we need to make sure we are patient with him.  Luckily, the teacher who is returning and the teacher's assistant in the classroom both know Nathan very well and are very kind and patient to him.  I know they realize that these changes aren't going to be easy for him and will help him along as well.

You Have to Pick Your Battles

Yesterday was picture day at school.  This is one of the most stressful days of the year.. for me!  My kids wear sweatpants and t-shirts everyday of the year.  If we go to church- they wear sweatpants and t-shirts, if we go to a nice dinner- they wear sweatpants and t-shirts, if we go to a party- they wear sweatpants and t-shirts.  Also, Drew has what we call crazy hair!  He has multiple cowlicks going in all different directions and his hair grows straight out, not straight down!

Nathan's school picture from last year,
4th grade

Every year, it's a fight in the morning to get the kids dressed, their hair fixed and out the door still looking decent.  But this year, I decided to go half way.  I got them to agree to wear sweaters and button down shirts, if I let them wear sweatpants on the bottom.  As Drew said, "No one is going to see my legs anyway."  I've decided somethings are just not worth the fight.  Is it the end of the world if the kids don't wear jeans (or as Nathan calls them- fancy pants) or heaven forbid khakis on school picture day?  Also, I let Drew style his hair, then I came in with the gel after and tried to plaster it down!

Drew's school picture from last year
2nd grade

Nathan had a really rough day the day before so I felt that coming to a compromise first thing in the morning was better than starting the day with an argument.

So, how did it turn out?  I have no idea!  I guess I'll find out when the pictures come.  I'll let you know.

Walt Disney World with Autism

We are getting really close to our Walt Disney World vacation.  I know for families with special needs, a big vacation like this can be daunting.  We first took Nathan to Walt Disney World when he was 3- about a year after he was diagnosed with autism.

Later this month, we'll be heading back
to Nathan's happy place!

For Nathan, there is no place in the world he would rather be than Walt Disney World.  He loves it.  He loves planning our trips, he counts down the days, he engages while we're there, and talks about what we did and saw for months afterward.  This will be Nathan and Drew's 6th visit.

As you're planning your family's trip, keep in mind what he or she can and can't tolerate.  I know there are certain things that Nathan does not handle well- especially anything that can lead to sensory overload- extreme heat, large crowds, and a lot of walking are all very difficult for Nathan.  To deal with the heat, we usually go during cooler months- the spring, winter or fall.  (We did go this past June, but it was a quick trip- just 2 days- and Nathan and I spent a lot of time at the pool!)

The DAS is attached to our magic bands anyone's
band can be scanned to get a return time, but the
disabled person MUST ride when you come back.

Disney helps us deal with crowds and walking with a DAS (disability access service) card.  With provides an alternative waiting area for attractions.  So basically, if we get to a ride and it has a 30 minute wait, we can scan one of our magic bands, then go see a show, ride a different attraction, or take a break for 30 minutes, then come back and go in the FastPass line.  We don't skip the lines (the old GAC- Guest Assistance Card- worked that way) we still have to wait, but we don't have to wait in the line.  We also get a special sticker for Nathan's special needs wheelchair/stroller.  The sticker lets us take the stroller into lines and shows so he doesn't have to stand.

Nathan loves his special needs stroller/wheelchair
it helps him enjoy the parks without getting too
worn out

The hard part with the DAS though is if the disabled person has his/her heart set on riding/seeing a particular attraction right away, he will still have to wait.  We try to get around this by sending my husband to get our DAS return time.  That way we don't take Nathan to the attraction then tell him he can't ride yet.  That would definitely cause a meltdown!  The DAS is for the disabled person and five other people.  Anyone in the party can have their magic band scanned to get the DAS return time, but the person with the DAS must ride in order for everyone else to get on the attraction.

Nathan is not big on meeting characters, but he does like
seeing Lightning McQueen and Mater at Hollywood Studios

If there is something you think your child may be afraid of or anxious about- check out YouTube.  You can see full ride throughs of attractions, shows, fireworks and more.  Nathan does not like roller coasters, we have shown him Space Mountain, Big Thunder Mountain and other rides on YouTube, but he's still not interested.  But he loves Soarin', Dinosaur, and Test Track after seeing them on YouTube then riding them.  He has always been terrified of fireworks even though he had never even seen them.  Just thinking about them would cause anxiety.  So before the Fourth of July, we started showing him fireworks on YouTube, then on we took him to a display on July 4.  He loved it.  He can't wait to see them at Disney World for the first time later this month!

A lot of families like to surprise their kids with trips to Disney World.  This would not work for us.  Nathan LOVES planning our trips just as much as I do.  But also, he needs to prepare for things mentally.  If we woke up him up in the morning and told him we were going to Disney World that day,  that would cause anxiety for him.  Even though it would be exciting, it would be unexpected and he doesn't handle unexpected very well.

Nathan loved getting a pirate makeover at the Pirates League
and is looking forward to doing it again!

The most important piece of advice I can give you is- be flexible!  With dining reservations, FastPass+ reservations, and showtimes, a lot of your trip can be planned out and you can feel like you're always running.  But when you have a child with special needs, sometimes you need to take unexpected breaks.  If you have to miss a FastPass and take a break it may be worth it in the long run.  If you don't get to see a certain show because it's too hot, take it in stride.  As long as you and your family are having fun, that's what really matters!

If you're thinking of a Walt Disney World vacation for your family, I say DO IT!  Just put a little extra planning into it and remember it's about having fun together.

Top 10- October 2015

It's that time again!  Time to check out the most read blogs of the last month.  This last month was a rough one.  I was busy at home and at work and had a cold that lasted a couple of weeks- so expect to see many more blogs during the month of November- including trip reports from our Walt Disney World vacation beginning the day after Thanksgiving!

The gluten free menu at Six Flags Great Adventure

10- Six Flags Great Adventure Part 2: Gluten Free Report
This blog post from August remains popular.  If you're going to Six Flags Great Adventure in New Jersey and you're eating gluten free, bring some food with you!

September 29, 2001- our wedding day

9- We Can Weather Any Storm- Together!
This year, my husband and I celebrated our 14th wedding anniversary.  It hasn't always been easy but it's definitely worth it and I wouldn't change a second of what we've been through!

The kids at Our Victory Day Camp

8- We Are The Champions
Consistently in the top 10, in this blog, I explain why Our Victory Day Camp has changed Nathan's life!  The people from this special needs summer camp have become like part of our family!

Just some of the paperwork I have to deal with

7- I'm Drowning.. In Paperwork
Being a parent of a special needs child means you have tons of paperwork- reports, records, evaluations- the list goes on and on!  And anyone can cal you at anytime asking for one specific report.

The FastPass+ page on the My Disney
Experience app

6- Disney World and FastPass
Planning a trip to Walt Disney World has gotten a bit more complicated, even for seasoned veterans like us, since the introduction of FastPass+.  In this blog I help you navigate the changes.

I love Nathan for who he is, not what he does and can do

5- It's Not About the Milestones- It's About the Moments
I can't always think too far into the future when it comes to Nathan.  Instead of comparing him to "normal" milestones, I have to take each moment as it comes and celebrate every moment!

I sometimes lie to myself and tell myself I
can do it all

4- I Just Can't Say No
A lot of people have trouble saying no.  I'm one of them.  But I have a hard time telling myself no.  I think I can do it all- but I actually can't.

I will fight for this boy until the day I die

3- An Autism Mom is an Advocate Mom
When it comes to Nathan I will always fight for him and what he needs.  It's not always easy but he's worth the fight!

Nathan's fort took weeks to build, but we all
worked really hard for it

2- Hard Work Pays Off
We all learned a valuable lesson this month- hard work pays off.  Nathan worked really hard to control his emotions and Jason, my dad, and I built him a fort in the backyard.  It took weeks to finish but Nathan's daily meltdowns have been reduced to a couple a week- at most.

My dad and his sister, Brenda, on her wedding day

1- October 3, 1987- The Day Our Lives Changed Forever
On October 3, 1987, my aunt was killed by a drunk driver.  My life, and the lives of the rest of my family members has not been the same since.

Honorable mention:

This wasn't an actual blog post, but a post on my Facebook page.  One night I got home from work to see Nathan's classroom assignment.  He love that he wrote, "I believe in Lauren Messano"- that was his counselor at Our Victory Day Camp.  Hundreds of people have seen this post!

Disney World and FastPass

I am so excited, I can hardly stand it!  We are now just 37 days away from our Walt Disney World vacation!  2 weeks ago I booked our FastPass+ return times.

We started our countdown more
than a year ago, so it's getting real!

FastPass allows you to skip the line for certain rides, shows, parades, or other attractions.  You will be given a 1 hour window to arrive at the ride entrance.  You can pick 3 per day and they must all be at the same park.  If you are staying on Disney property you can start booking 60 days before your arrival date.  Off property guests can book 30 days out.  This is the third time we've gone with the new FastPass+ system.  (Before you couldn't book your return times in advance).

You can make your FastPass+ selections
on the My Disney Experience app
or on the website

If you haven't been to Disney World before, this can be overwhelming.  You don't want to be running from one side of the park to the other side- you will end up exhausted and frustrated.  So what should you do?  You can call Disney World and ask them to send you maps of each park.  That way you can study them before making your selections.  I would once again recommend reading Birnbaum's Walt Disney World book.  Each park is broken down by area and each attraction is described in detail.  You can also check out Touring Plans.  There is a $12 subscription per year (but you can find coupon codes, I was able to get it for $9 for the year).  I had never done Touring Plans before, because I consider myself an expert!  But I decided to try it this year.  It is actually really fun. It uses historical attendance data for your dates to tells you how long lines will be, how long it will take to walk from one attraction to the next, and which attractions are best options for FastPass.

This is my go-to book for all things Disney World
I buy a new one just about every year

Unlike advanced dining reservations, which open for booking at 6am, FastPass opens for booking at midnight.  So, should you stay up until midnight to get yours exactly 60 days before your trip?  It really depends.  I would say definitely do it at midnight if-
1.you're staying for a short period of time
2. have a large party traveling with you
3. want to get FastPasses to popular attractions like an Anna and Elsa meet and greet, Seven Dwarfs Mine Train and Toy Story Midway Mania
If you're staying for a longer time, if you're traveling with a smaller party (4 or less) and you don't want those more popular attractions or you can wait until later in your trip to do them, you should be fine waiting until later in the day.

Happy planning!

I'm Drowning.. In Paperwork!

I need to get organized!  When you have a child with special needs, you will be drowning in paperwork.  I have every report from every doctor's appointment Nathan has ever had, every evaluation, every therapist.

This is the original binder I created for Nathan's
paperwork. 

When we were getting Nathan diagnosed, I created a binder.  That binder quickly became 2 binders, which quickly became a drawer in our file cabinet.  And now it's just a huge pile of papers and boxes in the corner of our dining room.  I just got a call from social services saying they need one specific report from the school from three years ago.  Ugh.

When we outgrew the binder, I started using
a drawer in our file cabinet

Why are all of these reports so important?  Every time you meet with a new service provider or doctor, they will start with a treatment history.  You will have to know how long he had ABA therapy before starting school, his date of diagnosis, and the date of his latest psychological testing.  And someone can call you at anytime and ask you to fax over 40 different documents immediately.

Now, I have a pile of papers and boxes in the
corner of our dining room

So, I guess I better get to the store and buy a bigger file cabinet, and this one will be just for Nathan's documents, because, who knows who will call me tomorrow, and what they will ask for!

Hard Work Pays Off!

Over the last month Nathan, and the rest of our family, has learned a valuable lesson. Hard work truly pays off.  At the beginning of the school year, Nathan was having a hard time, he was having a lot of meltdowns, cursing, and yelling out in class.

After a month of hard work by Nathan and
us, Nathan's fort is finally finished!

Nathan has a dream of one day becoming an architect and building a tree house for him to live in.  This is actually more than a dream, it's an obsession!  So, one of Nathan's therapists recommended building a smaller tree house or fort in the backyard as a reward for good behavior.  Nathan has been working really hard, trying to making good choices and control his temper in school and at home.  If he did well during the week, on the weekend we would work on building it.  Jason, my dad and I started working on it a month ago.  It was still warm out.  This weekend, four weeks after we started, wearing hats, coats and gloves, we finally finished (well, finished construction, we still need to finish working on the base and building up the ground around it).  Nathan is so excited.  Actually, I haven't seen him this excited about something that wasn't a computer, video game or Spongebob Squarepants in a long time.

The best part is, even though we've finished building, we can still use it as a reward.  One of Nathan's favorite things to do is to swing.  His occupational therapist says it helps calm him.  So we can use the swing and the fort as an ongoing reward.  If he makes good choices at school, he will be allowed to swing when he gets home.  He will be allowed to climb his rock wall.  He will be allowed to go down his slide.

Rewards can be anything or anywhere.  Think about what your child is really passionate about and use it!

An Autism Mom Is An Advocate Mom

I think people would describe me as a nice person.  I try to be nice.  But sometimes, I just don't have time to be nice!  After Nathan was diagnosed with autism, a fight began.  Getting the help, services, appointments, diagnoses, classifications and meetings for Nathan has been a constant battle.
If you call and leave a message for social services, don't expect anyone to call you back.  If you have a new teacher, don't expect that they will read your child's IEP and know what he needs.  If you call for an appointment with a doctor, you'll probably be told nothing is available for months.  So, what do you do?  Call back, again, and again, and again.

Sometimes my husband, Jason, says I'm too harsh.  When he is cc'ed on an email with a therapist, teacher or doctor and I tell them exactly what we expect from them and how they are not living up to that expectation, Jason will say, "I don't know if you should have said it like that.  It seemed kind of mean."

But you know what?  I don't care!  I've learned and grown so much in the last 8 years.  It used to be hard for me to speak up and ask for things.  But I've learned if you know what your child needs, demand it and continue to demand it, you will get it.  It might take months, or even years, but eventually, you will get it.

I know it is discouraging and frustrating, but please don't give up. You are your child's biggest advocate.  Continue to ask for what your child needs, eventually it will pay off!

It's Not About the Milestones, It's About the Moment!

We all wish for the best for our children and our children's futures. I do. But I also worry about Nathan's future. I don't know what tomorrow or the next 10, 20, 30 years will bring. 

I try not to think about it too much but sometimes the uncertainty just smacks me in the face. Usually it's when someone tries to tell me what to expect as my kids get older. Yesterday, a good friend was telling me about the teenage years. He said right now my kids want to spend time with me, but that's going to all change over the next few years. He said then when they get their licenses they'll be gone all the time and when they turn 18 and leave the house for college (or whatever), all I can do is hope that everything we taught them has sunk in and they make good choices.  

Of course, my friend didn't mean to bring up any fears inside of me. All I could do was sit there nodding with a lump building in my throat. I don't know if Nathan will ever get a license. I don't know if he'll ever move out and be able to live independently. I hope he does all these amazing things, but I honestly don't know. 

This happens often actually. I'll never forget when Drew was 3 and Nathan was 5, I was talking to two other moms. One was telling us she was concerned that her 3 year old was having trouble potty training. The other mom said, "Don't worry about it, it's not like he's going to go to kindergarten wearing diapers."  They both laughed, I didn't.  Nathan actually did go to kindergarten wearing diapers.  

Several months ago, in an editorial meeting at work someone pitched a story that young kids are spending so much time on computers, iPads, and video games that they're not learning to do things like how to tie their shoes until after they start school. Someone in the meeting asked me when my kids learned to tie their shoes. I said Drew learned when he was 4. I didn't mention that Nathan still can't tie his shoes. 

Usually when someone is talking about "normal" milestones and when kids reach them, I talk about Drew and when he did something.  I usually don't compare Nathan to other kids.  Why?  Well there are a couple of reasons.  First, it's for the other person's comfort. These people all know I have a child with autism. They don't mean any harm by what they're saying and if I say, Nathan may not do those things, Nathan wore diapers to kindergarten or Nathan can't tie his shoes, the other person will feel uncomfortable and then say they're sorry. I don't want anyone to feel sorry for us.  Also, I do it for Nathan, because I don't think it's fair to compare him to "normal" development milestones.

I'm sure there are other parents who have experienced the same or similar things.  It's not always easy in the moment, but try not to take it personally.  And don't compare your child to other kids, compare where he is today with where he was yesterday, or last year, or five years ago.  When I do that, I'm amazed by what Nathan can do!

I Just Can't Say No!

Do you have a hard time saying no?  A lot of people do.  I'm one of them.  But I don't really have a problem saying no to other people, I have a hard time saying no to myself!

I think I can do everything.  I can't.  But I still think I can.  I'm Wonder Woman right?  No, I'm actually not!

As you know, I'm a wife, and mom to two amazing boys.  I also work full time.  I leave my house for work every day at about 12:30 in the afternoon and get home at 12:45 in the morning.  I get up at 7, get the kids ready and drive them to school.  When I get home from dropping them off, I post my blog, then work on marketing for my mom's real estate business.  I make virtual tours, post ads on Facebook, whatever she needs from me.

I also volunteer for the PTA and the parent leadership team at the kids' school.  I feel like I should do more for the school.  It's hard because I work at night- when PTA meetings and events are held.  I often switch my schedule or take the day off for school events.  I also teach a special needs religion class at our church.  I want to make sure Nathan and other special needs kids are offered the same religious education as neurotypical kids in the congregation.

But I still think I can do more.  The other day I got an email from Ithaca College, the wonderful school I graduated from.  It needs nominations for the Alumni Association Board of Directors.  Of course, I immediately thought to myself, "I should do that.  I love Ithaca."  As I read further and saw the requirements, I realized, I'm nuts!  I don't have time for this.  I also want to do more for autism awareness, and drunk driving awareness- maybe one day.

It seems like everyone is always talking about how busy we are.  It's like a status symbol.  But it's no one's fault but our own.  But it's okay to be busy, I actually like it, especially when I'm busy doing things I truly care about!

October 3, 1987, The Day Our Lives Changed Forever

If you've been wondering where I've been or why I haven't written in several days, it's because I've been trying to write this post. It is one hardest things I've ever written. I've written and deleted it about a dozen times over the last few days. 

On October 3, 1987, my childhood came to a screeching halt. My innocence was gone. And over the next few years, my faith in our justice system and our country would be rocked. 

My dad and his sister, Brenda Carter Dirago,
on her wedding day

On October 3, 1987, Brenda Carter Dirago, my aunt, my godmother, my dad's sister, was killed. A beautiful, happy, vibrant, 29-year-old newlywed was ripped from our lives because some guy had to spend an entire day at a bar drinking, then drive himself home. Speeding down a rain soaked street, he crossed the double yellow line, crashing head first into her car.  She had just enough time to say to her husband, "What is this guy doing?"

This was before the days of airbags. Her seat belt did nothing to help her. Her chest was crushed by the steering wheel. She had massive head injuries.  There was no way she could have survived. 

Over the years I have written about Aunt Brenda a lot. I have given speeches at anti-drunk driving rallies.  It's been 28 years and I've been telling this story for most of my life.

The drunk driver, Thomas Corbin, was never punished for his crime. It was a pretty big deal at the time. It was on the news, in The New York Times, Inside Edition interviewed my family. The case went all the way to the Supreme Court which decided in a split decision that this man had paid for his crime with a $350 fine. My aunt's life for $350 bucks. I still can't let that go.

Now, decades later, this is just some old Supreme Court case that law students learn about, law reviews write about and defense lawyers use as precedent to help their criminal clients.  It's easy for other people to forget that an actual person was killed here.  Aunt Brenda is still gone. She is still loved. She is still missed. She is still grieved. Our pain hasn't gone away. 

Why do I think writing about Aunt Brenda is different for me this year?  Because I'm tired. I'm tired of talking about criminals who get set free or never get sent to jail at all because of some legal loophole, some mistake by prosecutors, some screw up by the investigators, or because of some deal their lawyers got for them.  The man who killed my aunt didn't pull out a gun and shoot her. He didn't kill her with his own hands. But what difference does it make?  The end result is the same. He still killed her.  She's still dead.

I love our country. But we need to fix our criminal justice system. It makes me angry that a man who killed an unarmed teen can be walking the streets and posting crazy stuff on social media. It makes me sad that a football star who knocks his wife unconscious on video can get the charges dropped by going to counseling. And it makes me furious that the guy who decided to drink in a bar all day and drive himself home on October 3, 1987 is still living his life, never facing any real punishment for killing one of the kindest, gentlest people I have ever had the privilege to know. 

I miss you, Aunt Brenda. I love you and will see you again, one day. 

Everyone else, please, don't drink and drive!!!!




(I didn't get into all the legal stuff, or why the guy was able to kill my aunt and only get a $350 fine. Please, take a look at this New York Times  article for the explanation.)

Top 10 September 2015

I can't believe it's almost October.  The kids have been back in school for several weeks, the leaves are starting to change, and pumpkin spice is everywhere.  So, it's time again to look back at the most popular blog posts of the last month.  Once again, thank you everyone who takes the time to read what I have to say.

10- Open Up and Say Ahhhh
Going to the doctor is always stressful.  It's especially stressful when you're taking someone with autism.

9- Just Go With It
Many doctors and therapists have told us not to give in to Nathan's obsessions, but over the years, we've found we can use his obsessions to help motivate him and to help us to connect with him on a deeper level.

8- Thank God for Family
This is a tribute, and thank you note to our amazing family!

7- Flapping or Flopping
We recently had trouble regulating Nathan's medication.  While taking a stronger dose, he had much more self control, but was so tired all the time, he was constantly falling asleep.  We decided we would much rather have him "flapping" all the time, than "flopping" on the floor and falling asleep!

6- I Must Speak About Autism
When Nathan was diagnosed with autism, some people told me NOT to talk about it, to not wear it as a badge on my sleeve, to not search for sympathy.  I'm not listening to that advice anymore.

5- We Are the Champions
I can't even begin to explain how excited I am that this is still in the top 10, more than a month after I originally posted it!  Nathan's camp, Our Victory Day Camp is the most amazing place, filled with the most amazing people.  They are starting intake interviews for new campers, so if you're interested, please call now!

4- Autism Meltdowns Part 2: When Ignoring it Doesn't Work
We had been ignoring Nathan's meltdowns for a while which has helped reduce the number of them, but now when he does have them, they seem to be much more severe.

3- We Can Weather Any Storm Together
Yesterday, Jason and I celebrated our 14th wedding anniversary.  It hasn't always been easy, but together we can make it through anything!

2- Sometimes Help Comes When You Least Expect It
A couple weeks ago when I was having a particularly bad day, a friend at work came up to me and did exactly I needed- listened.

1- Best Friends
Nathan doesn't have a ton of friends, but he has one friend who has become so much more than a friend, she's become family!

I can't wait to see what October brings!  Stay tuned!

We Can Weather Any Storm- Together!

Happy anniversary to my amazing husband, Jason.  14 years ago, we said "I do" in front of our families and friends and I wouldn't change a minute of it.

14 years ago today, we said "I do".

We got married in West Palm Beach a few weeks after the 9-11 attacks.  Most of my family had to drive from New York down to Florida, because their flights were cancelled.  We, like the rest of the nation, were still in shock.  It seemed like an impossible task to be happy after thousands of people had been killed, and many more were still suffering.  Eventually we realized that we had to go ahead with our wedding and celebrate the lives that were still here.

Minutes before this picture, it was pouring

If you know anything about September in Florida, you know that it's the heart of hurricane season.  There was a storm off just shore and it kept throwing bands of heavy rain, strong winds, thunder and lightning over the area.  Amazingly though, every time we had to go outside- the rain stopped and the sun came out.  When we were waiting for the limo driver to pick me up at my house, I called him and told him to back into our garage so I wouldn't have to go outside in the rain.  But about 15 minutes before he was supposed to arrive- it just stopped.  My bridal party and I rode to the church with the sun shining. While we were in the church- the torrential rain started again.  But as the ceremony ended, so did the rain.  Finally we went to the reception.  It was at a yacht club on the water.  When we got there, the storm kicked up again.  We could see the rain pouring down the windows, the boats rocking in the water, and the wind howling.

The rain stopped so we could grab a few pictures outside the
yacht club where our reception was held

This is kind of a metaphor for our marriage.  We have hit some pretty rough spots in life.  At one point, we had to sell our house and move in with my parents after the television network Jason was working for went off the air.  Nathan's autism diagnosis was a difficult time for both of us.  We have both always worked crazy hours and schedules and have never had a whole lot of time together.  Life hasn't always been easy.  But no matter what is going on around us, the two of us are, and always have been, solid.  Even though there may be a huge storm brewing all around us, together, we always seem to stand in the sunlight.

Minutes after the best man made his toast,
the torrential rain, and strong winds started again

Thank you Jason for being the most amazing husband and father.  You are everything I could have asked for.  I love you with all my heart.

Pope Francis Visits the US

Last week, I got the chance of a lifetime.  I was able to see Pope Francis twice during his trip to New York City.  Amazingly, I didn't have to wait in a line, win a ticket, or go through airport like security.

Pope Francis Waving as he drives past

The Papal residence on the Upper East Side of Manhattan is a few blocks away from my office.  When he drove by, I was able to just walk outside and see his motorcade as it passed.  It was interesting to see how his presence impacted people.  I saw all kinds of  people- young, old, Catholic, non-christian- break into tears upon seeing him.  At church this weekend, my priest described it perfectly, he is luminous.  There seems to be a light that emanates from him that warms and lights people around him- even when he speeds past you in his motorcade.

NYPD officers line the street and Upper East Siders wait for
Pope Francis to drive past

Since he was elevated to the papacy in 2013, Pope Francis has surprised us several times- addressing political, social and legal issues that other Pope's have not talked about.  I'm sure he will continue to surprise us as the years go on.  I hope that we listen to his messages of love, acceptance and progress.  It's a message that the world needs to hear!

Thank God For Family

Nothing is more important to me than my family. My husband and I are both very lucky to have amazing families that we love more than anything. Our parents, sisters, nieces, aunts, uncles and cousins are the most important people in our lives. We especially rely on our parents, who we know would do anything for us.  Unfortunately though, we don't live close to our families.  My parents live about an hour and 10 minutes away, and Jason's parents live in Florida.  But despite the distance, they are all always willing to help us out in anyway they can.

Our first trip to Walt Disney World with the kids-
we traveled with my parents, and my sister and her family

Our most recent trip was with Jason's parents, his sister and her family,
his cousin and her family and his 2 aunts

Since Jason and I both work and sleep weird hours, Jason's parents often fly up when the kids are out of school to help us out or my parents will take the kids to their house for a few days.  Since Jason and I got married 14 years ago, we have moved six times.  Our parents helped us each time- from packing up to the actual move and unpacking.

After Drew's First Communion with my parents, my nieces
and Jason's mom

While we know how lucky we are, it's very difficult to live so far away from our families.  It would be so nice to be able to call someone at a moments' notice to come over to help us, to have someone to call if we need help running the kids to school or practice or a meeting.  I am so thankful to have 2 sets of amazing parents.  I try to never take that for granted and appreciate everything they do for us.  Like I said, nothing is more important to Jason and me than our family and we try to instill those same values in our boys.  Nathan and Drew both have very close relationships with their grandparents even though they don't see them everyday or every week or even every month sometimes.  I thank God every day for our parents and the rest of our families!

We love you all!

Sometimes Help Comes When You Least Expect It

As you all know, we've been struggling lately, trying to control Nathan's meltdowns and outbursts.  Although they've gotten less frequent recently, they still happen and are so unpredictable.

Last week was a particularly long week.  There was a lot going on at work, I had gotten several bad reports from school, including a call from the principal.  I was basically just making through each day.  When I go to work, I try to leave all of that at home and not take it with me.

There is one person I work with who just always seems to know when something is going on at home.  He has an older son with autism and has an uncanny knack of coming up and asking me if everything is okay when it's not.  I usually only see him a couple of times a week and last week he came up to me on a rough day and said, "What's the matter?" I thought I was hiding my sadness and frustration pretty well.

I started to tell him about what's been going on with Nathan.  He didn't offer any suggestions or magic pills or try to solve my problems.  He just held my hand with tears in his eyes as I told him what was going on.  Then he gave me a hug and said, "You're strong, you're doing what you need to do.  Keep doing it." It was so nice to be able to talk to someone who understood.  To let down that curtain that everything is fine for a couple of minutes.

That's what I'm trying to do with this blog, to let other people know that they're not alone.  I don't have all the answers, but I can listen and share my stories with you!  Thanks for listening!

The Ultimate Reward

When you're dealing with problem behavior and autism, you sometimes have to get creative in coming up with rewards for good behavior.  When Nathan was little, pretty much anything would make him happy and act as a reward- a jelly bean, a light up toy, a "fidget".  Now that he's 10, he's not as easily impressed.

Nathan's flag hat, his stroller and popcorn are
some of Nathan's favorite things, but
not very motivating anymore!

The things he likes are not easily accessible or cheap.  He would love to travel around the world to every country- starting with Afghanistan because it's the first alphabetically.  He would love to own every video game ever created.  He would love to build an ultimate tree house that is bigger than our own house.  So, one of his therapists suggested we actually build a "starter treehouse" or fort in the backyard.

This is what our finished fort should look like- eventually!

This weekend, my dad, Jason and I got to work on it.  I did tons of research online to figure out if we should build something from scratch (um.. no!), if we should buy something pre-made (not very fun), or if we should buy a kit and put it together.  That seemed like the best option.

My mom and dad picked up the kit from
Home Depot

My parents picked it up from Home Depot and my dad brought it to our house.  We worked all day on Saturday, and still have a very long way to go.

Just getting started

Nathan and Drew didn't help.. at all!  But Nathan is excited about it.  And his behavior has been amazing.  Since we decided to build the fort (or as Nathan calls it- the NBT for Nathan's Boring Treehouse) Nathan's behavior has improved significantly.  He has been compliant at school and at home.  His teacher remind him to make good choices and we have promised to work on it every weekend until it's done- as long as he has good behavior at school.

Hours later, this is how far we got-
we still have a long way to go

It is a lot of work, and it wasn't cheap, but if this good behavior continues it will be more than worth it. We'll let you know how it goes!