Top 10 August 2015

On July 28, I wrote my first blog.  So far, I've written a total of 33 blogs, and hundreds of you have read what I have to say!  Thank you.  I am overwhelmed by the positive feedback I've gotten and by the number of people who are taking the time to read everyday.

As August comes to a close, here are the Top 10 Blogs- so far!

1- We Are The Champions- August 9- Our Victory Day Camp is the amazing summer camp Nathan has been attending since 2013.  Over the last three years, the directors, and counselors have become part of our family.  Nathan looks forward to these seven week more than any other of the year.

2- Something Is Wrong With My Child- August 13-  This is the emotional story of how I got an autism diagnosis for Nathan even as doctors and people around me told me he was fine.

3- "Can You Help Me?"- August 29- In this blog I told you about a woman who stopped me in a parking lot to ask me about our pediatrician and if he was any good with children with special needs.  In just 5 minutes this woman and I bonded over my son and her grandson who both have autism.

4- In Memory of Alison and Adam- August 27- Even though I didn't know reporter Alison Parker and photographer Adam Ward, I feel like I do.  In this blog I explained why.

5- It's a Lifesaver- July 30-  Nathan wears a tracking bracelet from Project Lifesaver.  Not only does it help ease my mind, it can be a lifesaver.

(tie)

5- Autism Meltdowns- HELP!- August 25- I reached out to you for help dealing with Nathan's meltdowns.  So many of you answered the call!  I can't thank you all enough!

7- This Is How We Roll- August 10- In this blog, I told you about our decision to buy Nathan a special needs stroller/wheelchair and how it has changed his life and ours. He recently said it was the best gift he's ever gotten!

8- Autism Advocacy- My Other Full Time Job- August 19- I feel like I am constantly fighting to get Nathan what he needs.  One phone call this month proved that to be true.

9- Tackle Football? Not For Our Family, Thank You- August 2-  Drew loves sports, but after two non-sports related concussions we have all agreed he will never play tackle football.

10- Never Say Never And Don't Take No For An Answer- August 5- When I was pregnant with Nathan, Jason got a job in New York.  So, we moved here from Florida.  After Nathan was born I had to stay home for a while, but after being out of work it was nearly impossible to find another job.

Thank you for reading!  Stay tuned for many more blogs to come!

"Can you help me?"

Yesterday morning, I had to take Nathan to a doctor's appointment.  After the appointment, as I was in the parking lot and buckling Nathan into the car, a woman in the car next to me rolled down her window and said to me, "Can you help me?"

Of course, me being me, my guard immediately went up and I hesitantly said, "Maybe, what do you need?"

She asked what I could tell her about the pediatrician in this office.  I told her he is amazing, that we drive from Westchester County to Dutchess County to see him.  I was still a little nervous, because I didn't know if she was investigating the office or something.  Then she asked if I knew if the office was any good with children with special needs.

I said, "Absolutely, my son is 10-years-old and has autism and we've been going to Dr. Malak since Nathan was 2 or 3.  He also has a child with special needs and is understanding, patient and kind."

She then told me that her grandson, who she is raising, is 2-years-old was just diagnosed with autism. She asked me how I handled it for myself.  I told her that it's hard, really hard, but we do what we have to do for our kids.

This is true for Grandmas too!

I asked her about what services her grandson was getting.  She was already off to a great start, and getting some early intervention services.  I recommended ABA therapy and gave her the name of Nathan and Drew's neurologist.  We talked about sensory overload and how to handle it.  My heart broke for this woman, I could see the pain and loneliness in her eyes.  I have been there, wanting to help so badly, but not knowing what to do, or how.  I gave her my email address, and the website for this blog, and she gave me her contact info.

Eunice, if you're reading this, I feel like we were parked next to each other for a reason.  Know that you are not alone, if you need anything, please feel free to reach out to me, I am here for you.  If you haven't already, please read these two blogs from earlier this month:
Something Is Wrong With My Child
My Child Has Autism- Now What?

For me, our meeting reinforced that I need to continue to tell these stories, continue reaching out to people.  Letting people know, we are all in this together!

A Week Away for the Kids

My kids spent this week at my parents' house.  Jason works early mornings, and I work late nights, so in order to let us get a little sleep, my mom and dad (Ba and Poppy) are helping us out.

Enjoying an afternoon swing at Ba and Poppy's playground!

Ba and Poppy picked up the kids Monday morning.  I packed up their clothes, medications, vitamins, some movies, their bicycles and scooters.  Drew did NOT want to bring his bike because it had training wheels, he has always been a little afraid to learn to ride a bike without them.  Nathan was so excited to go to Ba and Poppy's first thing in the morning, but when it was almost time to leave he changed his mind and didn't want to go at all.  So when they left I was nervous that they would not be happy.

Well, even though I missed them so much, they had a great time and barely even got on the phone to talk to me!  By Monday afternoon, Drew was already riding his bike without training wheels.  My mom said once they took the training wheels off.. he was off!  They had a hard time getting him to come inside Monday night!

Nathan and Mia sleeping together, like they did when they were babies

And Nathan did so amazingly well.  He didn't get on the computer at all on Tuesday- which in itself is amazing.  He is interacting with his cousins.  When we lived minutes away from my nieces, my boys would see them everyday.  They grew up like siblings.  But we moved 5 years ago and even though we only live about an hour away, they don't see each other very much.  And for Nathan, when he doesn't see people often, he needs time to warm up.  He told his cousins Daniele and Molly, "I used to say no cousins, but now I like you." His cousin Mia is the same age as him.  They are both entering 5th grade this year.  Well, they are best friends again!  They slept in the same bed Tuesday night, he told her "I love you, Mia", and he was talking her ear off!

On the way to the fair, they are so happy to be together

On Wednesday, my parents took Nathan, Drew, and Mia to the Dutchess County Fair.  Nathan had a great time looking at the exhibits with my mom. Mia and Drew loved riding the rides.  But they were so tired from their busy week, they were ready to go back home after just a few hours!

All the noise and lights of the carnival games caused
some sensory overload, but popcorn always helps!

Lunch time at the fair!

I am so glad my boys had a week, but I was so glad to pick them up and bring them home this morning!

In Memory of Alison and Adam

I have worked in television news since 1997.  I met my husband at work.  I have met most of my best friends at work.  A television newsroom is a family, especially newsrooms in small markets.  We love each other, we hate each other, we yell at each other, but through it all, we have each others' backs.  We are all working toward the same goal- putting on the best show for our audience.

For me, I am the one behind the scenes.  I am the one sending the reporters and photographers into the field, into crime scenes, into riots, into the eye of the storm, into harms' way.  And most of the time they do it, without a single complaint.  Sending a reporter and photographer out to do a story on tourism is something I wouldn't think twice about.  I am heartbroken by the news of the deadly shooting of reporter Alison Parker and photographer Adam Ward in Virginia.

I did not know them, but I feel like I did.  I was them.  I am them.  If you have never worked in television news you may think it's a glamorous life.  You may think everyone, especially anchors and reporters, is rich.  You may think we only work a couple of hours a day since we're only on the air 1 or 2 hours.  If you think these things, you're mistaken.  We are hard working people.  9-10 hour days are normal.  11-12 hour days are not unheard of.  During an emergency we go to work.  Like police officers, firefighters, doctors and nurses we leave your families and often don't go home for days.  We start out in small markets making barely enough to survive.  We dream of moving up to bigger stations in bigger markets and making enough to support ourselves and our families, if we have one.

I cannot imagine what Adam's finance must be feeling.  As the producer of the show, she was in the control room.  She saw the shooting happen.  She probably was one of the last people he spoke to as he was setting up his live shot.  She was probably the person who assigned them to that story.  Wednesday was her last day of work at WDBJ.  She was moving to a bigger station in Charlotte, North Carolina and Adam was trying to get out of the business altogether.

Alison was young, 24-years-old, just getting started in the business.  She was dating an anchor at the station.  Not many people knew about their relationship.  They had their whole lives ahead of them.

None of this makes sense.  We cover so many awful stories everyday.  We are often jaded, unaffected by the the terrible stories we report.  But there are some stories that stay with us, that change us, that we never forget.  This is one of them.  I am praying for Alison and Adam, their families, their friends, everyone at WDBJ and all their colleagues at television stations across the country.  We are ALL feeling the loss of Alison and Adam. To my fellow journalists, both in the field and in the newsroom, stay safe.

Special Siblings

Over the past several weeks, I've written a lot about Nathan, and what it's been like for Jason and me for the past 8 years, dealing with his autism.  But our younger son, Drew, plays a key role in that.  He is 22 months younger than Nathan, but is much more like an older brother.  Drew is Nathan's protector, helper and teacher.

Drew is Nathan's protector, helper and teacher

When Nathan has a meltdown, Drew reminds us to ignore it, or if we're outside the house and Nathan starts to have a meltdown he will immediately step in to help calm him.  For example, when we went to Walt Disney World in June, we went to guest relations and asked for a sticker for Nathan's stroller/wheelchair so we can take it into shows and into ride lines.  Well, Nathan HATES stickers and the woman at guest relations put the sticker where Nathan could see it.  He immediately started screaming, "Get it off!  Get it off!"  Drew was the one to step in and say, "It's okay, Nathan.  We can move it, don't get upset, we'll fix it."

Occasionally Nathan will agree to
play video games with Drew, Drew loves it!
(Drew not only acts like the older brother, he is also taller than Nathan)

But Drew is also getting older, he's 8-years-old now, and is starting to get to a point where he might be a little embarrassed of Nathan's behavior.  Sometimes, when Nathan is excited, he will do what's called flapping or stimming.  He will run around in a circle, with his hands flailing, and making a high pitched gasping, squeaking sound.  When Nathan does this, Drew will now ask me in a low voice, "Mom, do you think people can tell Nathan has autism?"  Depending on what Nathan is doing, sometimes I will say yes, others I will say no- because sometimes, he just looks like an excited kid.

Drew looks out for Nathan and makes sure he's okay

Nathan was diagnosed with autism when Drew was just a few weeks old, so this has always been Drew's reality.  But I also feel bad for Drew.  He loves his brother so much and would love to play with him and have conversations with him.  Sometimes, Nathan does play and Drew loves it, but it usually doesn't last long.  And Nathan only likes to talk about what Nathan likes to talk about.  He will talk to Drew about video games, his dream tree house, geography and flags.  But if Drew starts to talk about something he's interested in, Nathan will just walk away.

Drew has always known how to make Nathan laugh

I am so proud of Drew, and how he explains autism to his friends, how he protects his brother, and his maturity and understanding.  But I also make sure to remind myself, he's a child.  He's not a third parent (despite what he thinks and how he acts!).  We are all so lucky to have Drew in our lives.  He has taught me more than I could ever teach him!

BFF's!

Autism Meltdowns- HELP!

Nathan has been having some pretty severe meltdowns for almost two years.  He will yell, curse, hit, punch, kick and whatever he feels like doing in the middle of a meltdown.  These meltdowns usually have to do with transitions.  In school it can be ending language arts and moving to math, or a therapist coming to see him at the wrong time.  At home it can happen after we tell him to get off the computer for dinner, or finish playing a game to do homework.  Anytime we are leaving the house, we are sure to have a meltdown.

Believe it or not, this guy can get pretty angry
sometimes, his therapist says to just ignore
meltdowns that's not always easy

We have tried many things to deal with these meltdowns, we have tried punishment, we have tried talking calmly to him, we’ve tried yelling back.  Nothing has worked.  And the meltdowns can last up to an hour at times.

We recently started seeing a family training therapist.  She told us to ignore them.  Don’t respond at all.  Don’t gasp, don’t punish him, don’t do anything.  I was very skeptical.  Why would that work, he doesn’t like being punished, he doesn’t like being yelled at?

Well, so far, it IS working.  He still has his meltdowns, but when he sees that he’s not getting a reaction out of us, he will come look at us to make sure we’re hearing him, then he just stops.  I am still trying to work out what to do when we HAVE to do something and he has a meltdown.  For example, if I tell him to come to dinner and he starts yelling and cursing at me, it doesn’t matter if it takes him 5-10 minutes to get his yelling out before finally coming to dinner.  But when we have to go to school, we have to go to school.  The therapist said in those instances, just force him to do it, which I have been doing but that makes the meltdown last much longer.

Anyone else have any luck dealing with autism meltdowns?  I am really hoping for a great year at school, and don’t want this to continue for another year!

Haircut Hell

To Michael at Hair Designers in White Plains,

Nathan hates getting his haircut.  As soon as I tell him, he needs a haircut, he starts yelling, screaming and kicking.  It was the same thing yesterday when I told him I was taking him for a haircut.  The entire ride in the car, he screamed and cursed at me.

Walking into the salon, I was so nervous.  I didn’t know what he was going to do.  I didn’t know if he would hit you, yell at you or even let you cut his hair at all.  We have tried many different salons and hairdressers.  We have tried salons specifically for kids with video games he can play, we have tried barber shops, Jason and I have tried cutting his hair.  Usually when one of us cuts his hair that’s the easiest, but it comes out looking awful!

You greeted us with a smile.  I didn’t tell you Nathan had autism, but I could tell you knew something was different.  Usually when people talk to Nathan and he doesn’t make eye contact or answer, they stop trying and just talk to me.  You were so patient, and gave him all the time he needed to answer your questions.  You asked him how old he was, what his brother’s name is, you asked him how old his brother is, you even asked if he has started shaving yet.  I’m not sure if you could tell, but he thought that question was funny.  He didn’t laugh because he was nervous about getting his hair cut.  When you had finished only half his head and he asked if he could leave, you calmly explained that you were almost done, if he could just sit still for a couple more minutes.  This was the first time I was able to actually sit and watch while Nathan got a haircut.  Usually I have to stand and hold his head to keep him from moving and trying to run away because the hairdressers don’t try to engage him.

For years, getting Nathan’s hair cut has been hell, but you made it so much easier.  The fact that Nathan came back, handed you the tip and said, “Thank you for cutting my hair, Michael” was huge.  I wasn’t sure if you know how huge it was.  But then you looked me in the eye and said, “Thank you, continue to stay positive”.  It was in that moment as tears came to my eyes, that I knew you understood.

You didn't get to see this smile but, Nathan loves his new haircut,
and will look so handsome when he goes back to school next week

All I can say is, thank you.  Thank you for being so kind to my son, thank you for your understanding, and thank you for being positive!

Sincerely,

Becky and Nathan Cook

Saturday Night at Bareburger

Last night, Jason and I took the kids to Bareburger in Hartsdale.  This was our second time going there, and kids did NOT want to go.  They wanted to spend the entire day on their computers, or playing video games, but Jason and I forced them to get out of the house!  Drew also didn't want to go, because he did not like anything he got last time- but I blame that on a bad mood and bad ordering, not on bad food.

Front side of the menu

Bareburger is known for offering burgers made from several different types of meats- including beef, bison, elk, wild boar, duck, turkey and chicken.  They also have vegan options like sweet potato and rice, black bean or farmers quinoa.  You also have different options for buns, including a milk hemp bun which is gluten free, or you can get your burger wrapped in collard greens, which is also gluten free and vegan.

Back side of the menu

You can pick from a whole list of cheeses, toppings and sauces.  Even though they have all those different types of meat, I decided to be boring, and just get a beef burger, with country bacon, cheddar cheese, lettuce, tomato, dill pickle and red onions on a milk hemp bun.  Their fries are gluten free and fried in a dedicated fryer, so I ordered french fries with my burger.  They also have sweet potato fries- but I didn't try those.

My burger and fries!

Nathan has been eating burgers without buns since he was 2-years-old and went gluten free, so even when he can have a bun, he doesn't want it.  He ordered a grizzly, which is the cheeseburger off the child's menu.  We modified it so he got a beef burger, without a bun, without cheese and with french fries and apple slices.

Even after I cut my burger in half, the bun
didn't fall apart, but it had WAY too many onions

Our burgers and fries were delicious, the beef was juicy and the buns didn't fall apart, which is often a problem with gluten free buns.  The bacon was thick, crispy and delicious.  There was a ton of onion on my burger, I had to take most of it off.  I forgot to ask for a sauce on my burger, so I just put ketchup on it myself.  It was so big, I couldn't finish the whole thing.  And I got so many fries that Jason and I shared (he forgot to order fries), and Nathan ended up finishing them for me.

Drew liked his root beer more than the mandarin
orange soda he got last time

We did have a problem with our drinks though.  Jason ordered a rosemary limeade.  As soon as I heard him order it, I had a feeling he wouldn't like it.  It was very tart and he wasn't happy with it.  He sent it back and got a strawberry lemonade, which was delicious.  We don't ever have soda in our house or allow Drew to drink soda at home, but when we go out to eat, we sometimes let him get it as a treat.  Last time we went to Bareburger he ordered a mandarin orange soda, and hated it!  The sodas are organic and all natural, so they don't taste like regular soda that you get a most restaurants.  This time, Drew ordered a root beer, and loved it.  Nathan got an Apple and Eve organic apple juice box, and I ordered a ginger ale, we were both very happy!

Flourless chocloate cake with cherry compote

They also have gluten free desserts!  They have a carrot cake which I haven't tried, because I am in love with their flourless chocolate cake with cherry compote.  I was so full after my burger but I couldn't leave without at least a taste of it.  Drew agreed to share with me.  The cake comes out hot, and is soft, fudgey, ooey, and gooey in the middle.  I love the combination of the richness of the cake and the tartness of the cherry compote.

Drew and I shared dessert, we were a little excited

Jason and I loved both of our visits to Bareburger, and after this meal, we have convinced our kids too!  I think we will be visiting a lot more often!

Gluten Free Italian Food- in NYC, Near Grand Central

I love Italian food, it's my favorite!  My maternal grandma was Italian, so we have always had amazing meals in our home.  Since we went gluten free, my mom and I continue the tradition of Italian food in our homes, but sometimes it's just nice to go out to a nice Italian restaurant.  But finding delicious, gluten free Italian food in a restaurant isn't exactly easy.

My BFF, Jose, and I enjoyed an amazing meal at
Bistango inside the Kimberly Hotel in NYC

This past week, I worked a day shift, so my co-worker and BFF Jose and I decided to go out to dinner one night after work.  He took it upon himself to find a restaurant that had gluten free food near Grand Central Terminal- where I would catch my train back home.  He found the Bistango Restaurant in the Kimberly Hotel on East 50th Street between 3rd and Lexington Avenues.

Here's the menu, anything can be made
gluten free!

The restaurant is beautiful and cozy but with very high ceilings- to make it feel much more spacious. Their entire menu can be made gluten free- including pasta, flatbread pizzas, and desserts, so I was a happy girl.

Jose and I decided to order a bunch of things and share.  He was kind enough to agree to eat gluten free, saying, "This is like your Christmas, I can eat anything I want, anytime!"  We decided to start with a flatbread pizza and cocktails.  We asked our waiter which flatbread he recommended.  He suggested the roasted wild mushrooms flatbread- with caramelized shallots, thyme and truffles.  They also have Tito's vodka which is gluten free.  I ordered the Bitter Sweet Symphony cocktail- which was made with Tito's vodka, grapefruit juice, campari bitters and rosemary.  It was quite bitter, but also very yummy and not too strong- which is a good thing for me!

They have Tito's Vodka which is gluten free
I ordered the Bitter Sweet Symphony

Then it was time to order our dinner.  I had a hard time chosing.  Everything looked soooo good!  I finally decided to go for the Ravioli di Formaggio with heirloom grape tomato pomodoro and fresh herbs.  I haven't had ravioli in years, since going gluten free.  It had always one of my favorites.  Jose got the Eggplant Milanese- layered eggplant with fresh mozzerella and marinara.

Bread with dinner?  Yes, please!
We ate a few pieces before the pic- sorry!

They brought us out gluten free bread while we waited!  The bread was sliced thin and toasted, but still soft and chewy in the middle.  They gave us olive oil with balsamic vinegar and hummus to dip it in.  I would have liked a little more vinegar with the olive oil, because when we dipped it, we really just got oil- but it was still good.  The hummus was delicious- it was very garlicky, which for me, is perfect!

My cheese ravioli

Jose's eggplant

Next our food came out.  (They had forgotten our flatbread, so we had to ask for it.  The waiter asked if we still wanted it, and we both said YES!)  The ravioli was delicious. The cheese inside was creamy and perfectly seasoned, the grape tomatoes used in the sauce were still chunky, I love it that way, and there were thin slices of parmigiano reggiano cheese on top, adding just the right amount of saltiness.  The eggplant didn't disappoint either.  It was sliced thin, and layered deliciously with the fresh mozzarella and marinara.  I really liked that the eggplant wasn't fried.  Even with the cheese and sauce, it wasn't heavy at all.

The wild mushrooms flatbread was worth the wait,
it didn't last too long!

As soon as we finished our meals, our pizza was ready.  Our waiter was right, it was amazing!  The earthiness of the mushrooms, the spiciness of the sauce, and the sweetness of the shallots were all a perfect balance.  We ate the whole thing!

Dessert menu- yes, even everything on
here can be made gluten free!

We had to order dessert!  We decided to share the Chocolate Tiramisu.  Again, it was so good.  The combination of the chocolate and the marscapone crema made it very rich, and we could not finish it.

As you can see, I was very excited
for the gluten free chocolate tiramisu

Overall, we were both thrilled with our meal and we are already planning our next dinner there.  Jose said he couldn't believe the food was gluten free.  So, if you're in midtown New York, looking for some great Italian food, check out Bistango.

Date Day for Mom and Dad

This past weekend, my husband and I went on a date. An actual get dressed up, just the two of us, date. Last month was my birthday and husband bought me tickets to "The Curious Incident of the Dog in the Night-Time" on Broadway.  He picked this weekend because my in-laws are in town to stay with the boys.

Waiting for our train to head into the city

We very rarely go out, just the two of us.  Actually, that's not true.  We NEVER go out just the two of us, I can't even remember the last time we did.  We both work a lot and hardly see the kids at all during the week.  I see them in the morning before school or camp, and my husband sees them for a few hours after school.  So, we make the weekends all about the kids.  We just love being together and we want to spend as much time with them while they still want to spend time with us!

We saw "The Curious Incident of the Dog in the Night-Time"on Broadway

Because Jason has to be to work at 4:00 in the morning, it was a day date.  We went to a matinee. We were gone for several hours in the afternoon and evening on Sunday.  When we told Nathan we were leaving he was fine, but Drew gave me a really hard time.  He climbed into my lap and started crying and asked me to not go.  I had been gone the entire day before too.  On Saturday, I did the kids' back to school shopping then went to dinner at my parents' house to visit my aunt, uncle and cousin who were in town.  I had left the kids at home, because Jason's parents also flew in Saturday morning from Florida, and Nathan and Drew wanted to see them.  Drew complained that he didn't get to see me all weekend- he knows how to make me feel guilty!  I told him I was sorry, and that I would be back soon and we would be able to watch some TV together before bed.

I am so lucky that my family loves to spend time together.  I am thankful that Jason is such a good dad and loves spending time with our boys as much as I do, and that they like spending time with us.  But it was really nice to have some alone time with my husband.  We really should do that more often.

Curious about Autism? See this Play

This past weekend, my husband and I went to see "The Curious Incident of the dog in the Night-time".  It is the Broadway show that just won 5 Tony Awards, including best play.

Waiting to see "The Curious Incident of the Dog in the Night-time"

The play's website describes the main character, 15-year-old Christopher, as "exceptionally intelligent but ill-equipped to interpret everyday life."  It is based on a book by the same name.  Neither the book nor the play mention autism, but it seems obvious that Christopher has autism.

I will not give away the plot of the play, but I will say, YOU MUST SEE THIS SHOW, especially if you know someone with autism.  But even if you don't, it will explain so much that is often difficult to explain.

Christopher, like many people with autism, does not like to be touched.  This causes a lot of problems for Christopher and is a major part of the story.  There have been true stories of children who act out, sometimes violently against people who touch them.  This can be parents, siblings, teachers, sometimes even law enforcement officers.  Luckily, in our house, Nathan does not have an aversion to being touched.  He loves cuddling, and hugging.

The play perfectly describes what it's like to have autism

The Curious Incident of the Dog also explains sensory overload beautifully.  Sensory overload is is when a person has trouble processing everything they are seeing, hearing, smelling, tasting and feeling at once.  The play uses bright lights, and loud music and other noises to help stimulate the sensory overload, while Christopher crawls up on the floor screaming with his hands over his ears.  This was a familiar scene for Jason and me.  We have seen Nathan crumble in what looks like pain, because he is getting too much input to his senses.

The next one is a big one is another big one in our house.  Many people with autism are very literal thinkers, they need things to stated clearly and cannot understand metaphors.  As Christopher says, he doesn’t understand why “the apple of someone’s eye” means that that one person likes another person a lot.  He also wishes when people say “Please be quiet” they can say how many minutes he needs to be quiet for- do they mean forever?  Just about every year, I have to explain to Nathan’s teachers, aides and helpers in school that they have to state things clearly.  If you say “Cut it out”, he’s going to go looking for scissors and something to cut, or if you say “Take a seat”, he’ll want to take his chair somewhere.

Christopher can’t tell a lie.  Neither can Nathan.  I think this goes back to his literal mind.  He’s just very honest, sometimes to a fault!  Nathan will tell teachers, caregivers or other children if he doesn’t like them.  But lately, Nathan has started to lie if he thinks he’s going to get in trouble.  For example, if he’s being punished and isn’t allowed to use the computer, he will say “I’m not on the computer” when I can clearly see that he is on the computer.  This is actually a huge developmental step, so I try not to get too mad.

The unique set uses lights, and moves to simulate sensory overload

And perhaps some of the biggest lessons are for parents and teachers of children with autism.  Christopher is very smart, despite his disability.  His school tries to keep him from taking more advanced tests and classes because no one else in his special school is that far ahead.  But his father and his teacher fight back, and demand that the school make changes to suit Christopher’s needs.  This is a constant battle for us.  Advocating for your child becomes a full time job.  The play also shows the joys and struggles of raising a child with autism.  These kids are so trusting and look to you to be as honest as they are, and if you’re not, it can be catastrophic for the person with autism and the parent.

Please, go see “The Curious Incident of the Dog in the Night-time”, it is an amazing story, with a great message.  You won’t be disappointed.

Autism Advocacy- My Other Full-Time Job

I've told you before, I don't like the word no, especially when it comes to my children.  A therapist at Westchester Jewish Community Services (WJCS) learned that the hard way yesterday.

If you tell my child can't do something,
you better be prepared to explain yourself!

Nathan has been going to a social skills class at WJCS for the last two years.  The 12 week classes are held during the school year.  One session is in the fall-winter.  Then they take a break for the month of February and resume for the Spring.  I've been calling and e-mailing for weeks to find out what day of the week Nathan's class will be held in the fall.  Finally, Nathan's group leader from last spring called me yesterday morning.  She told me that she doesn't think Nathan should continue with social skills, because he isn't interacting with the other kids.  She said he needs too much prompting to engage. She suggested he get 1-on-1 help from an ABA therapist.  Oh, and by the way, she's leaving WJCS and her last day is Friday.

I was really taken aback, the whole purpose of a social skills class is to teach him how to interact with other kids.  Also, she had called me at the end of the spring session and said that she thought a different group would be more appropriate for him because the kids he was with last time were older than him and he didn't interact with them much.  At the time, I said that was fine and to let me know which group he would be in.

I told her, I have been reaching out to various organizations for ABA and have been told 1 of 2 things- either they had no therapists available to work with Nathan, or that Nathan is too old, or too advanced for ABA.  I asked the woman why she was "giving up on Nathan".

Nathan is good friends with his brother, Drew, but has
a hard time relating to other children

This seemed to annoy her and said she wasn't giving up on him and that she had suggested an alternative- ABA therapy.  She then said a conversational social skills group was just not appropriate for Nathan.

Whoa, wait a minute, when did he join a conversations social skills group?  As far as I knew, he was in a play and friendship group, of course a conversations group would be too advanced for him, he’s still working on learning how to make friends and play with other kids.  Having a conversation is WAY too advanced.

She said they moved him to the conversations group for the spring session.  Now, I was mad.

I told her that is unacceptable that first of all, he was moved to a different group without anyone informing me and secondly that he was obviously struggling through the 12 week session and no one told us about that either.

She said he was moved because there were only 4 kids in play and friendship group so they moved all the kids to other groups.  She said the play and friendship group no longer exists.  Then she said she would check with her boss to see if there was another group that was more appropriate for Nathan.

Less than five minutes later, she called back and said there is, actually, still a play and friendship group that meets on Thursdays.  She said Nathan can join that group.

I am very confused.  I don’t know why Nathan was moved, why this woman wanted to remove him from the class, and why she didn’t check to see if there was a more appropriate class.  I think a lot of it has to do with her leaving and not wanting to look into other options for Nathan.  If I had just accepted what she told me, Nathan would be the one losing out.

When you have a child with autism, or another special need, advocating for your child is a full time job.  One second everything is fine, then the next, something happens to throw everything off.  Although I don’t like hearing the word no, I have no problem saying it!  If someone tells you your child can’t do something- don’t accept it without finding out why and what the alternatives are, and if you don’t agree with the alternatives, SAY NO!  Demand a solution that suits your child’s needs, not what is convenient or easy for someone else.

Walt Disney World with Large Groups

 Our family is little more than 100 days away from our big Walt Disney World trip in November. Actually, we’re 101 days away, (Today is our dalmatian day.. get it? 101 Dalmatians?) Anyway, we are having a mini-family reunion during the trip. We’re flying down with my parents and my aunt and uncle and 2 cousins are joining us for the first several days of the trip. Planning for such a large group is fun, but also needs quite a bit of coordination. I’ve been in charge of most of the planning- mostly because I obsess over it! But I needed everyone’s input on our plans. This weekend we all met up for a Walt Disney World strategy session! My aunt and uncle flew up from Florida and my one cousin drove in from Boston and we met at my parents’ house along with my other cousin who lives near my mom and dad.

101 days until we arrive

The first order of business, was our meals. As I explained in an earlier blog, you have to book most dining reservations 180 days before your trip. I had booked dinners and breakfasts for every day. I had told everyone about the dinners but not the breakfasts. Everyone was happy with dinner but we decided to only keep a couple of breakfast reservations.

This weekend, I met with my mother, cousin Katie,
Aunt Karen, Uncle John, my dad, and cousin Samantha to plan our vacation

Finally, we had to plan our itinerary for which parks we would go to on each day and which rides we want a fastpass+ for. Fastpass+ allows you to make a reservation for a ride or attraction, so you don't have to wait in line. You can get 3 fastpasses per day, but they must all be in the same theme park. If you're staying on property you can book your fastpasses 60 days before you arrive. For off property guests, you have to wait until 30 days before. We decided to do EPCOT on our first day followed by Magic Kingdom, Hollywood Studios and Animal Kingdom on each of the following days.

We had been doing all our planning on a group text

Family reunions at Walt Disney World are hugely popular and if you're planning a trip for a large group, I definitely recommend getting everyone on board with a strategy session. If you can't meet in person, you can do it with a conference call, group text or Facebook messaging. We recently went on a Walt Disney World trip with my husband's family. That time there were 15 of us, and we weren't able to get together before the trip, so we did all the planning through group messaging on Facebook.

If you're just starting your trip planning, be sure to go back and read 5 Must Dos Before Booking your Walt Disney World Vacation, and Dining at Disney, a 180 Day Adventure

The Worst Shopping Trip of the Year

I very rarely go shopping anymore.  I used to love going to stores and browsing and looking around, but now, I just don’t have the time and it’s too much of a hassle.  I’d rather just order whatever I need online.

I've got my lists, and I'm ready to shop 

 

But every year at this time, I have to go to the store, to get all the kids’ school supplies, and it’s not fun!  This weekend I headed out armed with our 2 lists filled with everything from pencils and notebooks to Clorox wipes and tissues.  Luckily, this year, my mother agreed to help me- so she took Nathan’s list and I took Drew’s.  We started at Walmart.  A lot of the items were easy to find like kids’ scissors, marble notebooks, and loose leaf paper.

I'm so glad my mother was able to help me

 

Others turned into a scavenger hunt.  What the heck is a “Hi Polymer Pentel block eraser” and why is it different and better than a regular old eraser?  We walked around the back to school section of the store about 10 times before finally finding them.

This is a Hi-Polymer Pentel eraser, I had to Google it while in the store!

 

Eureka!  I found the EXPO dry erase board eraser
and it comes with markers-score!!

Finding EXPO dry erase makers was easy breezy, but finding an EXPO dry board eraser was not so easy!  And we saw 3 or 4 families all looking for Crayola thin markers- everyone was looking for the normal packages of 10 classic colors.  They didn’t have them, I ended up just buying the package of 30.  And, why every year, do we have to buy Ticonderoga pencils?  There are always tons of other types of pencils, but finding the Ticonderoga ones is like finding a needle in a haystack.  The most difficult item to find turned out be yellow folders.  Not just regular yellow folders, they were easy.  We needed two pocket VINYL folders.  We found red, blue, green, orange and purple- but no yellow.

Ticonderoga pencils? Anyone?
No, not Dixon pencils, the list says Ticonderoga!

We decided to leave and head to Target because they had a backpack Nathan liked.  We got the backpack, and found tons of yellow two-pocket vinyl folders.  When all was said and done, I think I did pretty good, I got all the supplies and only had to go to 2 stores, usually I have to go 4- Walmart, Target, Staples, and the local teacher supply store.  And I spent a little more than $150 for the 2 kids.  In the past I’ve spent way more than that.  But, I think leaving the kids at home and getting to my mom to help me really made the biggest difference. Instead of trying to keep track of what I needed from 2 lists, we were able to divide and conquer.

I guess I got enough for one store 

 

$152.79 I'm glad I only have 2 kids

I remember when I was kid, being so excited to go out and get all my new supplies and clothes for school.  But now I dread it, and my kids don’t care at all.  I guess it’s probably because when I was a kid I used to pick out a few notebooks, book covers, and a Trapper Keeper (remember Trapper Keepers?) all with my favorite characters on them- and that’s it!  Now buying school supplies means buying more than 30 items per child, including things like hand sanitizer and Zip-loc bags- and when is the last time you saw a child get excited about those?

Drew's supply pile

Nathan's supply pile