The Reason for Our Absence

Oh, hai there, dear Nate is Great fans! I posted a wee note on our Facebook page back in December noting that this blog was going on hiatus for a little while. (Hope you all saw it and didn’t think we abandoned you!) We’re finally surfacing from a very difficult past several months and I’m ready to start writing again. And the reason for our absence? My Dad, Nate’s Super Grandpa, died several days before Christmas.

I won’t get into details about my Dad’s illness or passing, only to say it was quick and that my Dad lived a very full 93 years on this earth. We didn’t fly home to see Dad before he passed away, though I asked if he wanted me to come home every time I spoke to him. (He always responded, “Stay where you are and take care of the little guy!”) We had a lovely week-long visit with him in August during which Dad really got to know Nate. He didn’t necessarily understand Nate’s diagnosis or why Nate doesn’t talk but he was greatly impressed with how Nate speaks through an iPad and devours bacon with glee.

At the start of the new year, we headed to Hawaii to start dealing with Dad’s house and estate and plan his Celebration of Life. Before we left, we reached out to Nate’s current teachers/therapists and our darling Dr. Syd to find out how to explain to Nate that Super Grandpa had passed away. And, as usual, they delivered with really great responses. My biggest concern is Nate not having a way to articulate any concerns this might bring up, like what death is or where someone goes when they die or if Chad and I are going to die, too. Nate’s teacher, Ms. Linda, suggested we emphasize that Super Grandpa was old and not mention “sick,” since Nate gets sick, too. Using his many years of expertise as a doctor, and his more recent experience as a grandfather, Dr. Syd had sage words. He felt that five year old kids — neurotypical or not — tend to respond more to our current emotion than to the situation as a whole. He suggested we explain my Dad’s passing through the lens of our own religious convictions and be open to responding to Nate in the moment, moment by moment.

During our trip in August, we had breakfast every day with Super Grandpa. Driving to his house before the first meal of the day was part of the routine that we constructed. Now we were returning four months later and that routine–and the person integral to it–was gone. Before we got on the plane, Chad and I explained to Nate that Super Grandpa died and we wouldn’t be able to see him anymore — but he loved Nate very much and continues to care about Nate from heaven. Though Nate giggled hysterically as Chad and I cried, Nate apparently understood what we said. During our two weeks on Kauai, Nate regularly asked for his teachers, classmates, and family on the mainland. He never once asked for Super Grandpa, even though his picture/name was on the same page as the others on Nate’s iPad.

We had a lot to deal with when we went home and very little time to accomplish it all. We had two weeks to accomplish what should have easily taken two months: plan and execute a public celebration of Dad’s life, clear out Dad’s house, and start dealing with the estate stuff. We managed to accomplish it all with the help of amazing friends and family. People poured out of the woodwork and offered very specific offers of help and we took each and every one. And, while it’s difficult to say if someone’s generosity trumped another’s, we were most humbled by our dear Ms. Katy’s offer to join us for a week on Kauai to help with Nate. (You may remember her as one of Nate’s spectacular Birth to Three therapists. She was also on the team that diagnosed Nate with autism.) Sure, we gave her an all-expenses paid trip to Hawaii in the dead of winter….but it was an all-expenses paid trip to watch Nate in Hawaii and Nate is anything but an ideal tourist.

True to his nature, Nate isolated Ms. Katy as a person who comes into his home and stays in his home–because that’s who she’s always been to him. Nate refused to get in the car with Ms. Katy to get a treat or go to the beach. Despite numerous attempts, Katy only managed to get Nate in his stroller once or twice to go in search of a shave ice. In fact, Ms. Katy only got to enjoy the warm weather and sunshine from the confines of the property where we were staying. It did have a lovely pool, complete with slides (but Nate doesn’t do slides), a lazy river (which Nate will only do if you’re carrying him), and a keiki (kids) pool with a sandy bottom–but it wasn’t quite the same as fully taking in one of the world’s most beautiful places.

Don’t worry though — we made sure Ms. Katy got to see all of Kauai, even if it was compressed into an hour’s time. Whenever a friend visited from the mainland, my Dad made sure to treat them to a helicopter tour of the Garden Island. It was something Dad had wanted Chad to do, too, but Chad never had the chance. So, first thing on a Thursday morning, Nate and I dropped Ms. Katy and Chad off at the airport and they flew high in the sky while Nate and I visited with our estate lawyer. (Guess who had more fun…?) I also took Katy out for a girls’ night (perhaps more needed by me than her) to our favorite restaurant, Duke’s, where she had her first (and second) mai tai.

Katy stayed with us for a full week. She left on Saturday on the last flight out after Dad’s service. It was an incredible luxury to have someone with us on island who knew Nate, who we trusted completely with Nate, and who Nate adored. Chad and I had a plate overflowing with questions and issues and concerns and people who needed things — never mind the grieving process. To never once worry about Nate’s happiness and care is a gift beyond measure.

The trip itself was relatively rough on Nate. The flight is long, the seats are uncomfortable. Tourism is booming and we had to move five times on three different hotel properties in order to have a roof over our heads during two weeks’ time. As soon as we unpacked, we were packing again and Nate wasn’t really sure which end was up by the end of the trip. (Truth be told, neither did we.) The jet lag nearly did us in when we got back to the mainland. Nate missed several days of school after our return because he couldn’t sleep — and that was on top of the four weeks of school he missed prior, two for Winter Break and another two for Hawaii. After he got on the time zone, he got sick. And then it started snowing and school closed for that, too. We’re all craving routine on any level but, at every turn, we find anything but.

So all this to say–that’s where we’ve been, dear friends: in the land of life. On top of work and caring for Nate, I’m now dealing with estate stuff, too. But I want to return to blogging because Nate’s little mind is crackling with growth and new talents and we need all of you to cheer him on! Thanks for sticking around, internet friends….

Nate

Change, Family, New Situations, Travel

February 12, 2015

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War

I know this blog is mostly about our boy wonder, Nate the Great, but there are occasional moments of our lives that seem worthy of sharing, too. We have recently found ourselves in a particular situation that is affecting everyone in our household–from my husband, Chad, right down to our cat, Pete. And this situation, unfortunately, is one very familiar to us. Friends, we are at war.

I’m going to backtrack for a minute here, and please forgive me if I’ve shared this story before. (But if I did, it was ages ago and you all have probably forgotten.) Picture it: December 25, 2011. It was a frosty Christmas morning and Santa had come and gone. As we do each year, Chad and I greet Santa and have him drop off gifts that we assemble so that the jolly man can go on his merry way and spread mirth throughout the world. Somewhere around midnight, after a lot of cursing, Chad and I went to bed having assembled a much-desired basketball hoop and other toys that had lots of packaging and construction needs.

At three a.m., we were awoken. Not with the gleeful giggles of a child who had snuck downstairs to peek at the tree. Not with the snuggly purrs of our (now dearly departed) cat, Archy. No, dear friends. We were awoken by the home alarm. Already exhausted from creating Christmas freakin’ cheer, Chad entered the code to turn off the alarm and failed to hit the all-crucial “Cancel” button. After heading downstairs to ensure all was well (it was), Chad crawled back into bed. Suddenly, our bedroom was filled with red and blue flashing lights. There was a knock at the door, followed by a loud bellow: “Police.”

The noise of the alarm and the holler didn’t wake Nate, but the flashing lights did. So now it’s Christmas morning, with police at our doorstep, and our toddler is wide awake. Chad’s struggling to get dressed and I’m trying to figure out how to get Nate not to see Christmas at three in the morning because that’s just wrong. We greeted the friendly officers, who explained the alarm was never cancelled so it was their duty to respond and they gave us a warning (we get one warning per year before being fined) because of the false alarm and wished us a Merry Christmas.

In the days following, the alarm continued to get tripped, always at night. We knew it wasn’t a burglar or anything of the sort, but we couldn’t figure it out. Until we went to do laundry and found this.

That’s right. The shirt that Nate had worn only weeks prior to meet the scary Santa had been eaten by something…or someone. Apparently Nate spilled food on there (what 2.5 year old kid isn’t covered in food) and a creature took it to be a free snack. In my basement. At night while setting off my home alarm. And so we did what we thought was a logical thing to do: we hired an exterminator.

The critter, whatever it was, was smarter than the exterminator. Multiple traps were set up and s/he avoided every single one. So Chad smartly put a dusting of flour on the basement floor to get prints so we could ID the culprit.

The prints, unfortunately, were inconclusive. Facebook diagnosis identified these as either a rat, a raccoon, or a baby monkey. None were ever sighted and, eventually, whatever it was, moved back outside.

Fast forward nearly three years later to last week. Pete becomes a hero. He’s lived with us for about two years now and he finally caught a mouse. Proud, he brought it to our bedroom and, thankfully, Chad got rid of the evidence before Pete presented it to me on my pillow. The temperature outside has started to drop and we live in a rather rural area. The presence of one mouse, while unsettling to me, was not cause for alarm.

Two nights later, in the dead of night, you guessed it–the home alarm goes off. Chad, being an extremely sound sleeper, needed me to holler his name and shake him numerous times before he heard the alarm. (Nate? Slept through the whole thing. And, mind you, this alarm is so loud that people a block away can hear it.) Chad did his husbandly duty: he woke up, turned off the alarm after looking for the zone where it was triggered, hit cancel (we learned our lesson), and checked it out. Nothing there. No big deal. Go back to bed.

Simultaneous to all of this, Nate hit a wonderful new milestone: he’s willing to wear pajamas! As the blog photos attest, I’ve lived with diapered and, now, underooed Nate for a very, very long time. With chilly mornings, he started asking for clothes, which meant I got to go shopping for super cute toddler pajamas.  (And he looks so stinking cute!) I got him several pairs, one with penguins that drive construction trucks that says “I Dig Staying Up,” a Christmas pair that says “I Ate Santa’s Cookies,” and a wintery pair covered in dinosaurs who are chilly and need to wear scarves.

So after a mouse sighting and a “there’s nothing to worry about go back to sleep” home alarm incident, imagine my dismay when I took Nate’s super cute pajamas out of the dryer and found this:

Something or someone ate Nate’s dinosaurs with scarves pajama pants. I know for a fact that this section of Nate’s pants had a smooshed cupcake on it. Chad went down to do further investigation; whatever it is also ate one of Chad’s socks. Surely Chad stepped in some delectable toddler crumb and the beast in the basement gobbled it up with the footwear.

And last night? Last night was the worst. There were scratching noises behind the stove. Large, giant scratching sounds that I could hear all the way in our bedroom. I sent Chad and Pete downstairs numerous times to look into the matter. After pulling out the stove, Chad saw the critter, a mouse (which he says was wee but, by the sounds of those scratches, I think it’s about the size of dinosaur), and Pete did nothing more than say, “Hi.”

All this to say, friends: we are at war. Tomorrow at two, the exterminator arrives. We bought a Dyson slim (which is seriously an awesome thing) and are sucking up every stinking crumb that Nate (and Pete with his kibbles) leaves behind. Pete is on notice: he needs to protect (yet not present and provide for) his family. And I am ready to move to a critter-free hotel. With room service. And fluffy pillows. And laundry service where nothing eats my son’s cute pajama pants. I get that the cold makes the critters want to seek warmth…but why must the warmth be that of my home? If I see the beast, you’ll hear me scream….and here’s hoping we continue to remember to hit “cancel” on the alarm….

Nate

November 17, 2014

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Halloweenie

When I was a kid, I loved Halloween. I loved the idea of going door to door to get free treats. My mother mostly made my costumes or sometimes I got a hand-me-down from a friend who had outgrown a store bought costume from years past. It didn’t matter what I was; it was just the idea of getting dressed up and getting free things.

Nate’s first Halloween. He was Indiana Jones!

Halloween has really evolved since I was a wee one. When I was a kid, I wore my costume to go trick-or-treating and described it to everyone the next day. Now, kids not only wear their costumes to school but march in a literal parade for oohing and aaahing parents. The costumes–and the parade–have nothing to do with academics or creating a better learning environment and they must create havoc for teachers trying to get children to pay attention during the day of school.

This was Nate’s first year at his new school. Last year, in pre-K, Nate dressed up as a tater tot (see above) and he and his classmates were allowed to watch, but not march in, the school’s Halloween parade. At his new school, however, Kindergartners get to parade, too. It turns out that Chad and I did a stinky job preparing Nate for this year’s Halloween festivities but, to be honest, we had no idea what was coming.

First, the costume. Chad bought Nate a wee policeman uniform. The fabric was cheap and Nate couldn’t stand the texture. He was willing to wear the pants and the hat and not much else, which made him more of a Chippendale than a cop. So we went with a simpler idea: blue long-sleeved polo shirt, blue pants, a sticker that said “Hello, My Name is Christopher Robin,” and a Pooh Bear to tote.

A pumpkin for nate from years past. (There aren’t many pics for the early parts of this story…)

Nate’s school parade was at 9:30 in the morning. So I hung out at his school after drop off to photograph him in the parade. I figured a few of us would show up and we’d call it a day. I had no idea what a big deal it was. More than 200 parents showed up to cheer their kids on. (I counted.) To boot, the parade was outside (since parents can no longer freely go inside school buildings) and it was 44 degrees with a strong wind.

Nate walked in the parade with his assigned neurotypical kindergarten class. Ms. Lauren took Nate to the classroom to line up. When he saw his friends piling out of the room in costume, Ms. Lauren reported that Nate froze. There were colors and sounds and makeup and nobody looked like themselves. It wasn’t right. Then it went downhill from there. Nate removed his Christopher Robin name badge between here and there.By the time they made it outside, Ms. Lauren was wrestling Nate’s Pooh Bear, iPad, and two bags of pretzels while gently pushing Nate forward in the line. Nate? He was hugging a bag of Goldfish crackers, eating them really fast, and looked terrified.

And then Nate saw me. It was all over.

Nate quit the parade and stood by me. Lauren joined us and kept saying she was “pretty sure” it was okay that Nate quit the parade. At this point, I could have cared less if Nate quit school. We cheered on Nate’s pal S as she marched with Ms. Linda and other second grade students. When the parade was over, I told Nate it was time to for me to go home.

Here’s how things went down in Nate’s mind: Mom drops me off at school. The next time I see Mom, she takes him home. This was the next time we saw each other SO IT WAS TIME TO GO HOME. Nate wouldn’t go in the side door with his classmates so Lauren and I took Nate back to the main door of the school to re-create the morning drop-off, wondering if location was part of the issue. It wasn’t. There was kicking, dragging, sobbing, tears. It was so awful. I dug a lollipop out of the bottom of my pocketbook and handed it to Lauren to bribe him back to the classroom. When I picked Nate up, both Ms. Linda and Ms. Lauren greeted me. They shared that it took Nate quite some time to calm down as he was certain he should have gone home with me.

Determined to turn Nate’s day around, after school we went to Friendly’s to get an ice cream treat. I wanted to get Nate the works – so we ordered two scoops of mint chocolate chip ice cream with rainbow sprinkles, mini chocolate chips, and whipped cream (and I helped Nate enter that long sentence into his iPad). We explained to our server that Nate was having a stinky Halloween and this was his special treat. She made Nate a perfect sundae with extra everything, handed it to us, and said it was on the house because no kid should have a stinky Halloween. Talk about a random act of kindness at exactly the right time!

We took Nate’s sundae home and, as he ate his treat, I unpacked his backpack and found this gem in there from his teachers. Turns out Christopher Robin lived, if only for a brief moment, at school!

One school here in Connecticut cancelled their Halloween parade. It made the State news. Repeatedly. It was done out of respect for families who do not participate in Halloween due to religious reasons. The way people reacted, you would have thought the world was ending. So I asked friends on Facebook what their kids’ schools do. Apparently, getting rid of the event is a trend! Some schools have replaced it with “dress as your favorite book character day” or “career day,” where kids don the outfits of vocations they are interested in. Those events are meaningful. They are educational and connected to curricula. Battling kids with inflatable costumes is not. Most of the kids — neurotypical or not — didn’t look to be having fun in the Halloween parade. It was cold. People were starring and parents that they didn’t know were running near them to snap a pic of their classmate.

Chad and I are genuinely considering pulling Nate out of school next year if the Halloween parade continues. It was such a bad experience for Nate. It fell in the “mandatory fun” column except there was no fun. And it reminded me of just how hard these types of unexpected and unusual events are for Nate and for some of his peers on the autism spectrum. It’s a little bah humbug (I know…I crossed my holidays…but still) but we might shelve Halloween for a while. Sweet treats, though — we’ll partake in all year long.

Nate

Awkward Situations, Holidays, New Situations, School

November 3, 2014

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Showing Gratitude

I always wanted to be the kind of mom who has the house decorated for each holiday.  In Nate’s lifetime, we’ve managed to pull of Christmas.  Sometimes, there’s a spring-like decoration, too.  And we always keep the spirit of autumn with us because my dear friend Anne gave us some pumpkin dishware that I never manage to put away.  By the time I remember, it’s so close to fall that I just figure I’m better off leaving the dishes on display in the cabinet.

I used to be pretty crafty, too, but the time for those types of adventures has also faded since Nate’s arrival.  However, I combine the two passions — crafts and holidays — when it comes to classroom gifts.

As we’re making the gifts, Nate and I like to think about the person who will receive it and how much they mean to us.  I get a lot of my ideas from Pinterest (you can follow me here; Yolanda Vega is my pseudonym.  She’s my most favorite lotto numbers announcer in New York City!) and we give the ideas our own flair.  When Nate was in day care, we made these sweet treats for his classmates for Valentine’s Day.  They’re shovels in a bag of candy with a note that says, “I Dig You!”

For the younger kids (Nate split his time between a younger and older class), we gave out bubble wands with a note that says, “You Blow Me Away!”

At the end of extended school year, Nate made special bookmarks for each of his summertime therapists.

During the academic year, we try to use the holidays to thank everyone who is on Nate’s team — and I mean everyone, from the librarian to the school nurse.  Two Halloweens ago, we gave out themed tissue packs and hand sanitizer with a note that said, “Say Boo to Germs!”

Because of food allergies, our holiday treats to Nate’s classmates cannot be edible.  So we did stickers for Halloween with fun tags.

We also turned orange socks into wee pumpkins for Nate’s teachers!

To facilitate all of this, I’m always on the lookout for a good deal. Nate’s immediate therapy team is huge – 1 lead therapist, 2 para-professionals, 1 speech pathologist, 1 occupational therapist, 1 physical therapist, and 1 BCBA — so setting a $10 per person limit already gets us up to $70. (And then there’s the teachers of Nate’s integrated classes – library, gym, art, and music!) One holiday when Nate was in pre-K, we gave his therapists acrylic drinking glasses (with a lid and straw), which held a gift certificate for an iced coffee. I scored the cups on clearance at Hallmark the summer before so we were able to give a really high quality gift at a reasonable price.

A few Christmases ago, Chad and Nate got me a Silhouette. It’s like a Cricut machine only it doesn’t rely on cartridges; you download all of the patterns online or you can easily make your own.  The Silhouette let me transform a Pinterest idea into this for Valentine’s Day 2013:

Get it?!? Bee Mine – with a Burt’s Bee’s lip balm?!?  It was the perfect gender-neutral gift too.  Nate’s female teachers got the Burt’s Bees lip balm with pomegranate, which has a hint of pink, and Nate’s lone male teacher got the regular flavor.

Since Nate’s with the same therapy team for multiple years, we have to get creative! For Valentine’s Day 2014, I baked brownies for his therapists (we all trust each other well enough that I’m pretty sure they ate them). My friend Jamie made hair bows for Nate’s gal pals and we gave the boys dinosaurs…because Nate thought his friends were “dino-mite!” (Hardee-har-har!)

My favorite craft was very early on in Nate’s therapy when he was still using the picture exchange system (PECS). We created PECS bookmarks for his teachers and therapists at Thanksgiving time so say that Nate was grateful for each and everyone one of them!

How do I find time to do all of this? Well, with the exception of the baked goods, I plan ahead…I mean I really plan ahead. I might be making Valentine’s packages during Winter Break. I do what I can when I can even if that means it might be nowhere near the actual gift giving day.

Hope this post inspires you to be grateful for the ones in your life. It’s always lovely to remind your friends, family, and colleagues how very appreciated they are every day.

 

Nate

October 27, 2014

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The Kindergarten Report

You guys. YOU GUYS. Nate is an official Kindergarten kid.  And let me tell you: he’s rocking Kindergarten. 

Nate is a contained autism classroom in a K-2 program. This means his room includes all three grades. Perfectly enough, there are three kids in Nate’s room (including Nate) with one kid enrolled in each grade level. There’s a lead therapist, Mrs. Linda, and two paras, Ms. Lauren and Mrs. Jean. Nate also has daily speech therapy with Mrs. Shannon, weekly occupational therapy with Mrs. Denise, and monthly physical therapy with Mr. Mike (Nate’s first male therapist ever!!!) plus oversight from his behavior analyst, Mrs. Cathie, who also happens to be Ms. Lauren’s mom!

To prepare Nate for Kindergarten, we talked a lot about his new school and new teachers. Nate knew his classmates from Ms. Susie’s room so we just talked about rekindling friendships with J and S, too. Over the summer, Chad and I took Nate to his new school’s playground to get familiar with the area in a positive way. Nate did fine on the playground as long as no one else was around; if another kid showed up, Nate usually asked to go home.

Our start at Nate’s school was a little rocky. The PTA hosted a get-to-know-you event for incoming Kindergarten students and we received an invitation via email from the school’s principal. The event boasted that kids would get to know their classmates, meet their teachers, and enjoy snacks on the playground.

When we showed up, there wasn’t a teacher in sight. There was a table, surrounded by a crowd, in the corner that had both snacks on it and the registration folks. We patiently waited in line and, when it was our turn, we told them Nate was in Ms. Linda’s class. The PTA? They had no clue who Ms. Linda was; someone actually asked us if she was a substitute teacher. When I explained that Nate was in the autism program, they froze. See, kids were getting name labels that were color coordinated to their classrooms; if your label was in green ink, then you should look for other green ink labels to meet your classmates. But Nate? He is the only kindergarten student in his class–and they didn’t have a color for his awesome room. I gently requested that they make Nate a rainbow label with each letter in a different color and they happily obliged. I slapped the label on Nate’s back and off we went to play on the playground.

Except Nate didn’t want to play.

Instead, we hung out by ourselves behind this picnic table, counting wood chips. After about ten minutes, we decided to leave. I emailed Ms. Linda about the event; turns out no one bothered to tell her about it! She was on site but in meetings. But don’t worry, dear friends! For that’s the only bump in the road we’ve had with school.

Nate loves Kindergarten. He cannot get into the school door fast enough every morning. Every afternoon, I open his backpack to find incredible treasures: story books he made, paintings and drawings, printed photos of his daily adventures, and, one time, a certificate of awesomeness!

In addition to being in Ms. Linda’s class, Nate is assigned to a neurotypical Kindergarten classroom with whom he attends daily “specials”–art (twice a week!), library (which they call media though I can’t bring myself to saying that), music, and gym class. Like last year with Ms. Susie, Nate loves art and tolerates (at best) the rest. He also goes on field trips with his assigned neurotypical classroom. A few weeks ago, Nate boarded a big bus (not the short one!) with sixty (!!!) of his peers and, with Ms. Lauren by his side, visited a farm to learn about growing and harvesting apples and pumpkins. Nate came home with a pumpkin and an apple of his own, a coloring book, and a piece of paper about his adventure.

We are, however, experiencing our fair share of challenges. When school started, it somehow triggered a minor flareup of Occupy Kitchen, which I was able to tamp out pretty quickly. Pretty much since day one, Nate’s been hoarding things to and from school. When we leave, he tries to gather as many toys and items as possible and carry them to the car, which he tries to take to school. While this has happened in Susie’s room, the reverse–gathering up classroom toys to take home–did not…but it is happening in Ms. Linda’s room. Together, we decided on a one-toy rule–Nate can bring one toy into school and take one home every day, though he’s pushed the limits on that. Often, Nate brings home multiple “scoops” of ice cream, stacked together into “one” item, which Ms. Linda kindly permits.

Perhaps if all food were Greek, Nate would eat all the time…

Nate has also stopped eating and drinking water at school. When he was with Ms. Susie, Nate couldn’t eat enough! One day while grocery shopping,  I was told that the lunch ladies had nicknamed Nate “the boy who loves hummus” because he ate it every day. Now? Not so much. It’s dwindled down to sending in carb-loaded snacks (veggie stick chips, popcorn, raisin bread, and pretzels) and two apples a day, and most everything comes back untouched. At his height in Susie’s room, Nate drank 1.5 big bottles of water a day ; now I’m lucky if he’s even opened his water bottle.

We’re not sure why the change happened but it’s been pretty consistent since the start of school. His therapists have figured out that Nate will drink some water if it’s from the water fountain. And we started buying Nate hot lunch at school to give him an even greater variety of food to choose from. Most of the menu items don’t agree with Nate’s palate but some do–Nate ate all of the rigatoni that didn’t have sauce on it (or wasn’t touching a meatball) on Monday and ate all his pancakes on Tuesday. To entice him to drink water at school, I bought some Kool-Aid drops in hopes that he might think it’s a melted Italian ice. (My whole wish of raising a child on organic foods with natural dye has completely been thrown out the window….)

These things are minor compared to the awesome fireworks that are going off in Nate’s mind. The year started with tackling Nate’s identification of numbers by name. We know he can order numbers (lots of numbers) but he couldn’t identify individual numbers when asked. Ms. Linda started with 1-20 and quickly moved up to 1-25. I’m not certain that Nate’s identifying the numbers by name yet but he loves this exercise, so much so that it’s moved from being a task to a reward for a job well done on something else. A strip of perfectly ordered numbers comes home in Nate’s folder every day.

Nate also has a hard time sitting through story time at school. So Ms. Linda carefully created activities to help keep Nate engaged in the tale. For instance, this week they read If You Give a Pig a Pancake. Nate made an accompanying book called If You Give a Horse a Hamburger as they read the tale. Many books like this have come home. Some are copies of the books and some are activity strips. Our magnet board is running out of room!

In addition to autism-related stuff, Nate follows the regular Kindergarten curriculum. This includes color identification; one of these worksheets comes home every day, too, which shows that Nate’s learning to read the color name and then match it with the right crayon. (My kid is brilliant!!!)

Nate’s also starting to learn to use adjectives in speech therapy. Requesting the “blue crayon” is no longer acceptable; Nate must ask for the “big blue crayon” or the “little blue crayon” in order to get what he wants. It seems that Nate’s quite advanced on the iPad, regularly creating five word sentences that blow all of his therapists away. So it’s now time to push him even further to help make Nate as articulate as possible.

Nate also gets to do things that make him the envy of his neurotypical peers. For instance, for one of Nate’s many sensory breaks throughout the day, he can choose to ride a tricycle up and down the hallways of the school. While we own three trikes and Nate can’t make any of them go, this is a special adaptive tricycle. It has a seat belt at Nate’s chest level, straps for Nate’s feet, and the handlebar is one giant bar instead of two handles. These things apparently free his mind up to get those pedals going. It’s a thing of wonder to watch Nate beam as he cruises in the hallway.

So, all this to say: Nate loves Kindergarten and he is a Boy Genius.

Nate

October 19, 2014

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The Lion King

Yesterday was the most magical day.  Yesterday, dear friends, Nate attended a Broadway show!!!

You probably know Theatre Development Fund for its TKTS booth in Times Square but they have a lot of other awesome theatre programs — including the Autism Theatre Initiative, which makes Broadway theatre accessible to individuals on the autism spectrum and their families. The accessibility is broad. TDF buys the entire house of one performance of a Broadway show and works with foundations, corporations, and individual donors to lower the the ticket price for attending families. This made the top ticket price $80, which may read as expensive, but the top ticket price is typically $227! And that price break makes a big difference for those of us who are spending the difference on therapy and insurance co-payments.

The performance was staffed by an army of awesome volunteers, all decked out in bright yellow Lion King shirts, who were knowledgeable about our families’ needs and were ready to help in every way. As we entered the theatre, we were greeted by these volunteers, who gave every person on the spectrum a free toy to play with (which we also call a fidget…something to play with that helps Nate stay focused). Nate got a bright yellow koosh ball! (And he scored a few more fidgets along the way when he got a little loud during the performance….)

When we got to the top of the first escalator, we met Auntie Anne’s co-workers. The professional photographers knew who we were (Auntie Anne had been talking Nate up a bit…!) so we got a few family portraits taken (with Auntie Anne, of course!). Nate ran over to the floor-to-ceiling windows and starred at the cars and people and lights of Times Square. It was magic.

On every floor of the Minskoff Theatre, TDF set up play areas for people on the spectrum to enjoy. It included a squishy floor mat, lots of sensory toys, bean bags, coloring pages, and trained staff members to help. Nate made a bee-line for the area and had a blast. It was just what he needed after sitting on a train for a long ride.

Auntie Anne was a little worried about our seats. The tickets showed that we had two sets of two seats. We assumed that it meant we were seated in separate rows, which Chad and I would happily accommodate. As we were ushered into the theatre, it dawned on us…we weren’t in separate rows. We had our own private box seats. Holey heavenly magic! It was just the four of us in regular chairs that we could move to accommodate whatever Nate needed at the time. It was elevated and had a lot of floor space so Nate could sit on the floor. And we had a spectacular view of the stage, the performers in the audience, the drummers in the other box seat areas, and the artists who flew birds and sang right in front of our spot!

It was also the perfect vantage point to see everyone’s experience. During the show, the house lights were up slightly (and Nate loved tracing the circle chandeliers with his finger in the sky) and additional lighting was provided by a sea of iPads that people on the spectrum used to share their experience with their friends. It was heartwarming to see that the patrons with autism weren’t just kids — many were adults. This show is perfect because it appeals to and engages everyone; though it was a children’s film, the Broadway event is much more than that. We saw families with one child on the spectrum who attended with a neurotypical sibling; this special performance allowed everyone to participate in a special event, including neurotypical brothers and sisters who might never get the chance to go because it means someone would get left out.

The audience? We were loud. Folks on the spectrum ranged from silence to yelps; moaning to high pitched screams (that would be Nate…who shushed us loudly when we shushed him). The performers? They were pros. They carried on as if we weren’t there and gave everyone the professional performance we deserved. I do think our audience clapped a little louder and with a lot more warmth than most — we clapped often and we clapped well. Applause was used to show appreciation at every little moment and wasn’t reserved just for specific times as directed in the play. I certainly hope the performers understood how much it all meant to those of us in the house.

Nate was allowed to have a special slurpee (or three) for the event…which Nate just resorted to calling “red.” When his drink was done, he wrote, “I want red.” on his iPad….

TDF is definitely responsible for the audiences’ ability to experience and enjoy this show. Nate has never sat through an entire sensory-friendly showing of a movie in the cinema (I think the longest we’ve stayed was a half-hour) and yet he was able to make it through the entirety of this 2.5 hour performance. I expected a lot of empty seats after intermission as I figured friends would have met their limit; I saw very few. When a person on the spectrum became overwhelmed by the experience, TDF staff magically appeared with a fidget and an offer of help. Our families were allowed to come and go as we pleased, with some taking breaks in the play area during the performance, and volunteers were located at every exit to help facilitate this.

If the behavior required greater aid, this magical woman whose shirt read SPECIALIST showed up. She was a social specialist/behavior analyst. We had one on our floor and we suspect there was one on each floor of the theatre. Before the show and during intermission, some friends fell to the floor and became immobilized and POOF! The SPECIALIST arrived! Some friends had difficulty navigating the public bathroom experience. POOF! The SPECIALIST to the rescue. It was magic. MAGIC. And now I want to have a SPECIALIST appear in my home all the time, too.

I cannot stress enough how magical and meaningful this experience was for our family. We listened to the soundtrack and read social stories about The Lion King for a month prior. When Rafiki got on stage and sang her opening line, I’ll never forget how Nate snapped to attention with a look of, “I KNOW THIS SONG!” and suddenly he realized what we had been working toward. Without opportunities like this, we wouldn’t get to go to the theatre; it just wouldn’t be an option. And here’s Nate, at age 5, getting to attend a Broadway show — that he loved. And now our horizons are a little broader, knowing that live arts can engage our son — can be something that we all share — and it’s something we plan to do in the future.

One thing I noticed (from the spectacular vantage point in our box seats….) was the audience’s reaction to the performance. There was a lot of chatter from our friends on the spectrum during the narrative parts but it was relatively quiet during the musical numbers — and I don’t think it was the orchestra drowning out their sound. The lighting, movement, costumes, puppetry, and music engaged Nate, too, and it’s made me wonder if he would fare well at a performance of modern dance, which blends almost all of these elements into a sustained performance.

The trips had a lot of firsts for Nate.  It was his first train ride; he loved that there were no seatbelts like on planes and in cars and he marveled at how things fast sped by our window.

It was Nate’s first time to Grand Central Station. The instant we emerged from the train tracks, Nate stared up at the bright blue painted sky. In this picture, Nate discovered the wonderful four-sided clock in the middle of the terminal. It was also Nate’s first time in Manhattan. We decided to walk from Grand Central to the Minskoff Theatre. Chad carried Nate (the experience made Nate a little clingy) but he spent the whole time silently looking up at skyscrapers in awe.

Nate also enjoyed the world’s biggest hot dog at Junior’s….

…and we also found out that he likes pastrami!

All told, this was a ten-hour day for us. We left the house at nine and we were home at 7:45 that evening. Nate stayed awake for the whole thing. After his bath, we crawled into bed and I took out his new Simba stuffed animal. (Because Auntie Anne makes treats like a Lion King bag filled with a show shirt and stuffed animal just magically appear out of nowhere….) I sang a part of the opening song (which I shall not share online anytime soon) and Nate giggled – because he knew the song and he knew Simba. And my boy fell asleep and slept straight through the night.

So. That’s the magical part, folks. But here’s the stinky part: there are only four autism-friendly performances on Broadway this season, all due to TDF. This is the first season they’re doing four performances; in previous years, it’s just been one. When The Lion King performance that we attended went on sale, the tickets sold out in four hours. There’s obviously a demand for this kind of programming but they can’t keep up with it without funding. If you’re so moved, make a gift to TDF for this program. I can promise you that the funding will be well-used (Auntie Anne is in charge of that at TDF, after all!), As we’ve shown with our past fundraising efforts here, many small gifts can add up to have a big impact. (Put “Nate is Great” in the comments so Auntie Anne knows you’re a fan!)

If you’re interested in participating in the event, click here to join their mailing list and keep informed about upcoming autism-friendly productions and performance dates. Do everything you can to attend — because it truly is magical.

PS This blog post got picked up over at Autism Speaks’ blog!  Check it out here!

Nate

Fun, New Situations, Public Outings

September 29, 2014

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Overwhelmed

Usually, I do my best to be super cheery on this blog — because we certainly have a lot to celebrate in our lives. But over the past few weeks (in my silence, sorry!), I’ve been quite overwhelmed on many fronts. I have discovered that change is not only difficult for Nate — it has become difficult for me. Our lives need to have a set structure in order for Nate to blossom and thrive and I’ve become used to that schedule, too. When that balance tips, it throws me and Nate out of whack.

None of the things that are overwhelming me are bad. In fact, they’re things that everyone wants. My astute husband did some super sleuthing, determined our car was worth way more than we owed, and traded it in for a new one before its warranty ran out. We picked it up on Thursday but yesterday it was in the shop getting some things installed, so we had to warm Nate up to the idea of riding to school in Dad’s truck, which he wasn’t so keen on. We’re getting our house painted – but the painters have pushed the start date back twice and, when they did show up, it was on a holiday so Nate was home (and the babysitter was sick) and he kept getting surprised by strange men showing up outside of a second story window. We bought our first real don’t-have-to-assemble-it-on-your-own piece of furniture (a bed and nightstands) ever – but the delivery got really messed up and it took a lot of phone calls and appointments to get straightened out.

When these things are layered on top of specialist appointments for Nate, early release days and holidays from Kindergarten, team meetings, grant deadlines, and Chad’s wonky work schedule, which has him leaving anywhere between 5:30 to 8:00am each day, it’s too much. This week and next, there’s at least one thing that is out of the ordinary that’s happening. It’s a lot to remember, a lot to balance, and ungraceful when an appointment gets cancelled (after you’re already in the car) or when a vendor shows up late.

This past weekend, we went to Maine to see Chad’s family. It was a planned trip that Nate was prepared for but no one realized until the day we left that we’d be driving a brand new car. The car confused Nate a bit. It also didn’t help that this was Nate’s first car trip post-potty training. Nate still can’t tell us when he needs to go — not if we ask him or by signing or by iPad — so we just kept stopping and trying to see if we could get a win.

Nate had an awesome time playing with his cousins, and he was willing to parallel play while drawing, jumping on the trampoline, and playing on a jungle gym swing set. The eight-hour car ride to get to Mam’s house, however, had a bit of a damaging effect. Every time we tried to get into the car, whether it was to drive to a cousin’s house or drive to a store, Nate wouldn’t do it. I’m not sure if it was the new car, the uncertainty of the length of drive, or both, but it took anywhere between twenty to forty-five minutes to wrestle Nate into his car seat.

Chad and I have also been frustrated with Nate’s progression with potty training. He’s been out of diapers and pretty much accident free since February but, at home, he will only use the little “potty chair.” In Hawaii, Nate happily and ably used the regular toilet, which made everyone’s life easier. After we came home from the Aloha State, we moved the potty chair from the living room to the bathroom, inching it ever so closer to the right spot. But, still, Nate wouldn’t use the real toilet at home.

At our last team meeting, we discussed this issue and we decided, as a team, that the potty chair would magically disappear after we got back from Maine. While at Mam’s house, Nate had no problem using the real toilet. Nate’s BCBA warned us that there might be a few accidents when we got home but Chad and I were buoyed by Nate’s success up north.

Oh were we ever wrong. We got home on Sunday night. It’s Wednesday. We’ve had six accidents so far, enough to tax our supply of bleach wipes and laundry detergent. Damn the BCBAs for always being right.

So, dear friends, while we have joy and cause for celebration in our lives, always, we sometimes are quite exhausted, too. I promise to get back to sharing the adventures of Nate (and there are some good ones!) but right now, I just need a nap or two…

 

Nate

Change, Family, Regression

September 26, 2014

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Church

Every year since Nate was two, we have gone to an annual Greek Orthodox church fair in our community. The event celebrates all things Greek–dancing, music, arts and crafts, and, most importantly, food. Our annual pilgrimage to the Greek Orthodox church has led Chad and I to unofficially declare ourselves members of this group. Any culture that has food this spectacular is most certainly a culture of which we want to be a part.

Nate likes Greek food.  Actually, he loves it.  For about a year, all he ate for lunch was spanikopita, a spinach and feta cheese pie. But his favorite Greek food is loukoumades. They’re little balls of deep fried dough that are drenched in honey and rolled in cinnamon and sugar. Every year, Nate gets a basket of loukoumades.

Our annual trip to church is an interesting way to watch Nate grow. Here’s Nate enjoying his first loukoumades at age 2.

It was love at first bite.

At age 3, the love affair continued. (And wow, was that ever a super short hair cut!)

Last year, as Nate was 4, he partook in the entire event. Nate had his own plate of spanikopita, a baklava sundae, and loukoumades to end the event.

This year? Nate had some ice cream along a little spanikopita and tiropita (Greek cheese pie)….

…but he saved his appetite for, what else, loukoumades!

It was a fun but quick visit to the fair this year.  Apparently, Nate remembered the loukoumades and tried to take us to the booth right away.  However, the loukoumades are at the top of a really fun hill….so Chad and I had to run up and down this hill with Nate a few times to get it out of his system. This year, I got the pastitiso, which are layers of ground beef, macaroni, and a spectacular souffle on the top, and Chad got souvlaki, skewers of marinated pork that were grilled. Nate had ants in his pants though so we had to eat our food pretty quick.

The only down side to the fair this year and last is their wee carnival. The church books in a few carnival games and rides for the kids to play. Unfortunately, all but one ride didn’t allow adults to accompany children and the one that Chad or I could go on was inappropriate for Nate. Our boy eyed a few of those rides, especially the ones where you get to “drive” a wee car in a circle, but we’re not at the point where we can trust he will stay in the ride by himself. We were very grateful that Nate was willing to walk away from the rides as loukoumades were much more valuable to him than anything else at the fair.

Our bellies are full from the fun fair…let the countdown begin until next year’s event!

Nate

Eating, Family, Fun, School

August 30, 2014

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Kindergarten

Tomorrow, Nate starts kindergarten. Kindergarten. Nate will be in a contained autism classroom. He will be the sole kindergarten student and will be joined by two first graders and two second graders. We already know Nate’s classmates, as they overlapped with him while in Ms. Susie’s pre-school program. But Nate’s classroom will be at a new school as our town only has one K-2 autism program for the entire district. Nate will also be assigned to a neurotypical kindergarten room, which he will join for art, music, library (I cannot bring myself to calling it “Media”), and lunch.

Seeing as he will be the only kindergarten student in the class, we asked friends to give Nate advice on how to be the best kindergarten student possible. So here’s the sage words that Nate is pondering as he prepares to enter kindergarten!

Nate’s first school photo (age 2.5)

“First of all, be a good sport. That means, like, play by the rules and have fun. Make lots of friends. Don’t wiggle during the Pledge of Allegiance and don’t leave a sandwich in your backpack for a really long time, like two weeks.” — Kainoa, age 8

“Have fun.” — Thatcher, age 7.5 (and the “.5” is very important)

“Hopefully you get to be Dolphin of the Day and help the teacher.” — Blake, age 6 (Blakey lives in California. I wonder what the Connecticut equivalent of Dolphin of the Day is…Whistlepig of the Day?)

Nate’s first school spirit day: his school colors were orange and blue (age 3)

“Stay calm, have fun, make new friends, and, best of all, if someone tries to be mean to you, like if they say, ‘Your backpack is like a pre-kers,’ then say, ‘Thank you, I like it that way.'” — Colin, age 9

“Imagine it’s a whole new world so there are lots of things to explore.” — Nora, age 6

“To be the best kindergartener, you have to listen to your teachers really good. Follow the rules and be good.” — Aubre, age 6

Nate in Spring 2013, age 3

“In order to do great in kindergarten: 1) Just do what the teacher asks, because if it is something you seriously hate you are going to have to do it anyway. Unless it is something you can’t do, then you have to tell the teacher in a polite way that ‘I can’t do this, maybe you can help me a bit?’ Because you are still going to have to do it NO MATTER WHAT. 2) You should practice writing and reading early, so that way you know how to do it when you get older. 3) Don’t forget that kindergarten is always fun. And as I always say Rule #2 ALWAYS HAVE FUN!!! (After Rule #1 which is Safety First.) 4) Something I think you might enjoy Nate is learning how to read. You can read about adventures and science and all your favorite bedtime stories, as well.”  – Peter, age 10. (Peter is on the autism spectrum, like Nate, and has been a wonderful role model to our little guy as he grows and matures. Peter has a dynamic personality, is a medaling Special Olympics skier, and has even won a national Lego contest!)

“Don’t forget your backpack! You are going to have a lot of fun there!” — Marissa, age 8

“It depends on your teacher. If you like your teacher, you will have a good year. I liked the end of the day when I got to play with blocks and other toys. We also did a lot of arts and crafts with an art teacher so I hope you have an art teacher. The kids in the class all become friends because enemies don’t start until second grade.” — Tess, age 8 (It should be noted that Tess is entering third grade….we wish only friends for you, Tess!!!)

Nate in Fall 2013 (age 4)

“You shouldn’t be scared because you don’t have to be. Listen to your teacher and learn good things.”– Zoe, age 8

Zoe’s sister, Hannah (age 5), who is also starting kindergarten, said, “Tell Nate not to be scared because learning is important.” Hannah’s mom is still trying to figure out where this sage advice came from. Hold it over her head, Jamie!!!

Nate’s school photo Spring 2014 (age 4)

With advice like this, Nate’s ready for the big day! I’ve also made him a very special t-shirt and have packed a bag of comfort items in case the world seems too big.  Check our Facebook page tomorrow morning to see if Nate allowed me to take an obligatory First Day of Kindergarten photo!!!

Nate

Fun, New Situations, School, Transitions

August 26, 2014

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An Ode to Nate’s Therapists

Our sweet Nathan has spent more than two years in the care of Ms. Susie and her paras Ms. Mechelle, Ms. Sandy, and Ms. Julianne, and Ms. Mollie, Nate’s speech pathologist. Over the years, his team grew to include a multitude of therapists: Ms. Laurel, his physical therapist; Ms. Jen, his occupational therapist; Ms. Cathie, his BCBA; Ms. Kathy, the school nurse (who, it seemed like, Nate saw nearly every week after creating a weak table in yoga at the end of gym class); Ms. Andrea, who represents the school district; and another Ms. Jen, the school social worker, who gave a hearty try (alas, to no avail) to get State in-home aid for our boy.

Nate’s first day in Susie’s room – May 2012

Ms. Susie’s pre-k class is a whirlwind of change. Students don’t begin in Susie’s room in August of each year; they start school when they turn three and age out of the State’s Birth to Three program. This means she has new faces coming into her room throughout the year. Her class size ranged from four to eight, all with the same staffing. Nate alone flusters me; eight kids on the autism spectrum with very few (perhaps two?) who are verbal would overwhelm me to no end. Susie, Mechelle, Sandy, and Julianne managed the change and each student’s (very) particular needs with amazing grace and calm.

In Susie’s room, Nate learned how to be part of a group environment. By the end of the end of his time there, Nate confidently walked to class, unpacked his backpack, and took a seat to start his morning activity. Nate learned how to participate in circle time and wait patiently as a story is being read–something he struggles with at home but has learned to tolerate at school. He learned his colors and his numbers — and showed us that he can learn these things at a blazing fast speed. Nate learned how to spell and write his name, aided, no doubt, by the equally left-handed Ms. Susie.

First Day of School – August 2012

My monthly meetings with Susie served as a check-in on Nate’s academic and social progress but also helped us through some difficult times, including Operation Occupy Kitchen. Ms. Cathie came up with a spectacularly simple yet effective motivational tool for Nate, a token board (which I’ll write about soon) that helped Nate physically get from point A to B in the school without having a meltdown.

Susie and her team took Nate to the potty more times than any of us can count. It took more than 1.5 years of trying to get Nate potty trained, which included going to the bathroom every half hour (and later, every hour) during the school day. Amazingly, only once did I need to buy flowers for a therapist, Ms. Sandy, who got hit by the fountain of youth on a successful (yet not so successful) trip to the potty.

Halloween 2013 – Nate as a Tater Tot for Susie’s classroom party

Though they are educators with a start and end to their workday, these therapists were there for us in and out of school. Susie did check-ins at our home to better be able to help advise on behavioral issues that arose. We emailed each other all the time. And now that Nate’s aged out of their room, we’re all Facebook friends, which I really enjoy.

We saw each other through personal milestones, as well. The therapists cheered me on as we endured Chad’s two year stint in graduate school. Ms. Mechelle had a beautiful baby boy, Henry, who Nate despises because he takes all of Ms. Mechelle’s attention away from him. Ms. Susie got married at the end of Nate’s first year in the room — and, on Thanksgiving Day 2014, she’s due to have a child of her own.

Nate and Susie’s selfie on their solo bus trip to see Nate’s new school and classroom

Words can’t express how fortunate our family feels to have these women on Team Nate–and to have them in our lives beyond Nate’s time at their school. On Wednesday, Nate starts kindergarten at a different school than the one where these women teach. They all cried on Nate’s last day of school in June. Ms. Julianne burst into tears as I dropped Nate off and Ms. Susie got teary (and she swears it wasn’t the hormones). We’ll always hold these women in our hearts — and we cannot wait to visit soon to have Nate tell them all about his kindergarten adventures.

From L-R: Ms. Laurel, Ms. Julianne, Ms. Jen (the OT), Ms. Mechelle, Ms. Sandy, Ms. Mollie, Ms. Kathy. Down in front: Ms. Susie and Nater Tater. Missing: Ms. Andrea, Ms. Cathie, and Ms. Jen (the social worker).

Nate

Family, Milestones, School, Transitions

August 25, 2014

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