What I had to accept about my son's autism

One thing I know for certain is there are an infinite number of ways in which a household can function, or not function. Since we all have different skills, experiences, needs, resources, settings and variables; then it stands to reason what may work for one, will not work for another. It also stands to reason, some things you haven’t tried, may work also. Autism is a lot of things, but one of its primary features is the guessing game you play daily. This game can be fun or frustrating and sometimes it’s both.

We as parents also long for acceptance of our children for life is short, and their childhood really shouldn’t suck.  We spend a lot of time educating our own friends, family, the school, our employers, people at the grocery store, or anywhere we frequent. We spend a lot of time teaching, and accepting.  But we have our own things we must accept ourselves.   Sometimes once you accept something, you can then be less stressed about it. You realize, this is what it is, you accept it. This may mean there is additional work and therefore you just earned yourself a reprieve of some kind.  Here are the top things I had to accept about my son’s autism.

  

He will not potty train at the same time as other kids.

This was early on, it was apparent he would not be able to at the typical time of age 2-3. I had to accept it was going to take longer because he didn’t have the same sensory system, or communication skills. This didn’t mean I accepted he would never learn it. If there are a few things a parent shouldn’t accept, it is that. Being able to go to the bathroom on your own is essential. But for Noah, it wasn’t until he was 6 going on 7 until he was fully trained.

He will not eat the same as us (for now).

 I will have to prepare separate meals; this means I spend most of my time in the kitchen. So having a function kitchen is essential.  Its not the same currency that other kids have. I had to let go the typical way of dealing with a "picky eater".  No bribery, no bargaining, and certainly no starving. (this created more anxiety and FYI it took years to undo). For those things will work on typical kids, but he is not typical.

He has his own sleep pattern.

Try as I might to get him on a “normal person’s schedule” (I actually called it that once, gasp) It’s not ever going to be something I can count on. He may waken at a more reasonable time 4 days out of the week, and I have to be ok with this.  He is a “night owl” that is his natural rhythm just as waking early with the sun is mine.

His memory works differently.

He is not going to remember to do most things without being either reminded verbally or by a list right in front of him, and even then, he will still need to be reminded. But as long as I am not all stressed out when reminding him, he is aok with doing what he has to do. But he will remember other information he was only told once. Like how to fix his bike’s chain, the details to Minecraft and how many passengers died on the Titanic (its 706).

He has anxiety.

 Sometimes that makes him into a little monster, where he is disrespectful or angry. But that isn’t who he is. Anxiety is not something you can control, for that is the very nature of it. It exists to protect you. It is not something you control it’s something you manage.

We need more time to do things

Vacations have to have a limited amount of activities, or enough time built into them to allow for the inevitable down time, or day off from doing things.

He will always have autism, but autism won’t always have him

Redefining Mother's Day for Autism Moms

The ideal Mother's Day for me would be with my family at one of my favorite places on earth, Busch Gardens Williamsburg.

I have written articles about Mother’s Day in the past. Mostly from the collective point of view of those I know who have more “normal lives” and those who are touched by autism.  Each offering different bits of advice on how to push through, practical tips for the day, or just basic encouragement to let those out there know, they are not alone. This article originally appeared in my Examiner Column May 2014

Re-defining Mother's Day

Mother’s Day means something different to everyone. To my fellow Autism Moms, it is bittersweet. We may share some of the glory and some of the same pain as other moms of course, but we are not other moms either. Just as single parents, same-sex couples and other situations too numerous to list across the globe have their own set of challenges, so do we.

We like other moms are grateful for our children and love them. We will cherish any kind of art project they have created with their occupational therapist or art therapist. We may not get to hear our children say I love you, if we are lucky, we know they do. In many households, Mother’s Day is just another day.

It is a day full of stress, redirection and putting out fires-usually not literal, but sometimes.  A day full of explaining the same information that you have already over-explained about 10 times as much as you would for a typical child. And typical, is not really something you know anymore, because every day is different, and there isn’t much typical about it. You are changing diapers on your child who is over the age of an age where diapers should be part of it. You are also doing other activities in the self-care category that should no longer be part of your day such as dressing and feeding. You have spent an enormous amount of time in your kitchen. And dealt with any number of meltdowns, some of which that resulted in an injury to yourself. If you were able to use a phone, chances are you have been constantly interrupted (15-20 times during any 10 minute call) thus conditioning you that calling people is a negative behavior.

All of these things are part of it, all of them are things you work on daily. But there is no magic button to make it go away. It just takes time and patience. 

All moms have a less intense version of these things when their children are little, but on Mother’s Day come the rewards. The hugs, kisses and sweet things said. Breakfast in bed, or a meal out, special presents made by the kiddies and something special from the hubby. But in autism house most of the time you will not receive a gift they made because they can’t sit long enough to make something. You will not likely get a hug or a kiss because these are too painful for your child and doesn't come into their normal thought process. Your child may not even speak, so no sweet things to be said, and if your child does have any language they normally are just asking for something. And because you are likely in enormous debt up to your ears, no real gifts from the hubby because you just can’t justify spending your grocery or therapy money on jewelry or even dollar store socks.

Children with autism teach us much; they teach us what it means to be human. How we all can feel tired, scared and threatened. How we sometimes really want what we want, exactly when we need it, because maybe we have been waiting a very long time. And this also teaches us the value of patience. It teaches us the value of being in a civilized society, the value of rules and the value in sometimes breaking those rules.  They teach us to rise above their terrible behavior and love them anyway, because we all deserve to be loved. And deep down, we know part of them does love us, even if they can’t show it.

Mother’s Day can give you the opportunity to love and embrace the miracles of autism, and not focus on the negative aspects. Maybe this is just for a few moments before your child is awake, or after they are in bed. Perhaps your child has been reading at a very young age, Maybe they are a human calculator or can operate a computer better than you. ASD kids take so many things literally and that can be funny.(I keep a list of things my son says to enjoy). Maybe they have taught you about life, judgement and respect. You can also chose to celebrate how far they have come, how they can sit longer in a chair, are starting to write, or use a real cup. Maybe they can say mom now, when before it was just grunting.  Or maybe your child can finally swing on a swing or ride a bike. All of these things are reasons to celebrate this “Mother’s Day”. It like most things is a choice you can make. For you do not deserve to be unhappy, if happy is what you want to be.

For me however, Mother's Day will proceed much like I have mentioned in this article.  I will chose to find the best in it when possible.

Skipping Mother's Day (excerpt from Examiner Column May 2016
 Over the years, the more new holidays creep into the calendar, the more work it all seems to be. Not that I don’t enjoy celebrating, I like many of you, just don’t get to. Our lives run at a different pace due to the need of additional work to pay for the costs of autism, and well because of the differences in our lives from autism. Mother’s Day is usually not celebrated in this house.


For More see this year's Examiner Article posted here, sorry these are the rules of copyright

Whichever it is for your household, I wish you a happy day, Mother’s Day or otherwise.

Open letter to my son about Autism Awareness

This letter was originally published on my Examiner Column " A letter to Noah for Autism Awareness Month."  April 2011

Dear Noah,

Today is the beginning of Autism awareness month and you are seven years old. You may not know what autism means but you are aware of what it is.

You are painfully aware of how loud talking and lots of people talking make your ears hurt.

You are aware of how the lights can be so bright they make your eyes hurt

You do not like food that is slimy, or has strong smells, or has “too much going on”

You are aware of how your body feels very slow and is not cooperating with you, making you feel tired or sick.  You know the feeling of how your body feels far away from you even though you are in it.

You are aware of how hard it is to pedal a bike, swing on a swing and get dressed.

You are one hard working kid and have to work harder than other kids.

You are aware of how angry and scared you feel way too often.

You are aware of the feeling of embarrassment but do not understand what the word means.

You may not be aware and understand how other people feel, but you are aware of it when they tell you making you feel bad.

You do not understand why people say things that they do not mean like it is raining cats and dogs when there are no cats or dogs falling from the sky.

You love numbers, computers, and taking things apart and are so good at those things if you work hard you will be an engineer, meteorologist or inventor one day when you are big.

Part of your brain works much faster and better than the other half making you very smart at math, science, computers and reading, just like Albert Einstein.

You have been reading since before you were three years old, which is very fast and very smart.

You are a very funny boy and even though people can make you feel uncomfortable you are very friendly to them.

You can be very far away and we miss you when you don’t feel well.

Even though you can not say you love Daddy and I and we don’t get to do a lot of things together we know that you love us.

And when you were very little and didn’t really talk to me, I knew you knew that Mommy loves you more than anything in the whole world because you would say “Whole World!” after every time I said it.

I hope by the time you understand what Autism is you will understand that everyone has challenges in their lives, and challenges give us a chance to be heroes.

Thank you for being my hero and letting me be yours

Love Mommy

Little Squares with Colors on Amazon

New coaster is Invading Busch Gardens Spring 2017

In spring of 2017 a new wooden roller coaster will be invading Busch Gardens in Williamsburg Virginia. America’s most beautiful park is adding yet another thrill ride to the delight of thrill seekers. The park already has thrill rides in most of the “villages”. Scotland has Lockness Monster, France has The Griffon, Oktoberfest has both Mach Tower and Verbolten and Fiesta Italy has Apollo's Chariot and Tempesto. (the latter opened Spring 2015). This coaster will be added into the New France section of the park, which currently has mostly shops, the log flume Le Scoot and a stop on the railroad. You also can enjoy some delicious smoked food, visit the Golden Eagle, mine for gems and for the little ones, ride Le Catapult.

Vikings are Invading New France.

The theme of this ride is going to be of a Viking story.  Talk was going on for a short while with park goers being able to vote and “decide the ride” as far as the name. The masses spoke and the decision is to name the coaster InvadR. This is a family coaster in the sense the height requirement is planned to be 46 inches. However Larry Giles VP of Engineering stated “This is no kiddie ride, there will be an exciting drop of 74 feet and nine airtime hills”. This will make the hills similar as to what you experience on Apollos chariot, but not at the same speed. The planed speed for InvadR is 48 MPH, where Apollo’s Chariot hits over 70MPH. InvadR merges both the stability of a steel coaster and feel of a wooden coaster since the tracks will be wood and is manufactured by Great Coasters International of Sunbury PA.

Some fun aspects of InvadR are going to be its theming of over 2100 feet of wooded terrain through an underground tunnel (what!). The location is near Le Scoot and the railroad but none of these neighboring attractions will need to be closed during the construction, which makes park goers very happy. We will be sure to capture some pictures when we visit later this month for the Food & Wine Festival.

Fans Will Have More Choices to Vote.

Dan Dipiazzo, vice president of marketing stated there will be more options to vote about in the future for the creation of InvadR.  “Our fans are so loyal and passionate about this park, and we want to make them co-creators in this exciting new project,” Dipiazzo said.  “We still have a lot of details to finalize for this attraction, and our guests will get to weigh in and be a part of the development.

If you want to be included on the Fence Art of InvadR click here while submissions are open (until May 5, 2016)

Busch Gardens Blogs

Back to the Book

Life has been full of many twists and turns and it is for many people. I was pleased that I wrote my book about Noah years ago, especially knowing how challenging it was to complete such a huge project, with almost no assistance. (Yay for my long-time friend and grammar Nazi Keith who edited the first draft).  But everything else was up to me.  I released to friends and family an advanced reading copy back in 2010, then a kindle version in 2012(which was full of formatting issues, some of which Amazon wasn’t even aware of, but they have since changed the format in which you upload your materials). Thankfully one day I was able to download that myself and then made the necessary changes.  The first edition of Little Squares with Colors went live 4 years ago on Amazon.com, Barnes & Noble and I pretty much was distracted with life, I did not worry or spend time on marketing it. I suppose it was mostly because I wasn’t in it for the fortune and fame (not that any writer can truly expect either).

But here we are 4 years later, both Joe and I have had different work opportunities which have changed the way our household functions. But Noah is more functional, he has been homeschooled now since the summer of 2013 and after we adjusted to that, (and winter ended this year) I was able to finally devote the time I need to the second biggest project of my life.  I am currently working on the dreaded marketing. The correctly formatted Kindle went live on April 25, 2016. There has been a first edition in print also available. For those who purchased directly from me, this final version is slightly different than what you have. 

The cover is new (well new 4 years ago) and improved, though I am still not fond of the title placement. If I can ever figure that out, I will change it. For now I will go with…hey the book says to look differently so, look on an angle. Lol The inside is mostly the same with some minor format and chapter title changes, and 2 additional sections. One of which was moved from one location to another and expanded, another that was to be in the book but for some reason it wasn’t ever in the print that I ordered. I purchased Adobe finally and learned a lot about making PDF’s, the original file of this book was edited to have the section “Santa Wishes” and typical typo edits, never saved correctly or was uploaded incorrectly. So it isn’t in the orange covered copy. However according to about 5 different sellers on Amazon, this makes that copy worth $800-1000, to them. Though I am curious who would actually pay that, if I can find out, I have some copies I will sell and sign.

 The original ARC. Worth $$$ haha. However, I did like the pic of Noah and LOVE the title here.

So if you never purchased, you’re in luck! You can buy on Amazon for $11 and if you have Prime, free shipping. The kindle version is also available, that will run rotating sales from $5 to $8 (but it’s only $1 if you buy the print book).

And for you most loyal of fans, let me know if you want to obtain a copy. I will have small print run done to redistribute to those who already bought one but would like the final product. Just let me know.  I would like to do it completely free, but depending on demand may have to charge shipping if it exceeds my budget.

And for those of you just joining us, below is a summary of what Little Squares with Colors : A Different Way to Look at Autism is about.

SUMMARY

Seven-year-old Noah is fascinated with weather, computers and taking things apart. He is tenacious, began reading at the age of three and seems to be full of endless energy. He is just like many other children, except he didn’t speak more than a few words until he was four and half years old, was in diapers until he was 6 and was lost in his own world. He would have hour long tantrums over things that seemed insignificant and would bag his head but could navigate a computer and understood the concept of negative numbers when he was just five. Between brilliance and incapacitation was Noah.  Poignant memoir how one family raises their autistic seven year old son, bakes gluten-dairy free, almost loses their house-goes broke, loses a dog-gains two more and somehow keeps their sense of humor, minds and marriage thriving. Written with humor and inspiration to challenge readers to think differently about what behavior really tells us. How our own attitudes shape our perspectives which can help or hinder progress.  And asks the question what if Autism is the next evolution?

WHAT’S INSIDE THIS BOOK:

• ·         The stories included are painted with themes of tolerance, perseverance, love, and humor.
• ·         Having faith in your intuitions, following your gut and the importance of thinking outside-the-box
• ·         What worked, what didn’t and why.
• ·         The importance of rest, support and being able to manage stress for everyone involved.
• ·         ABA
• ·         Behavior Modification
• ·         DIR / Floor time, 
• ·         Occupational Therapy
• ·         The Gluten & Casein free diet
• ·         IEP workings, challenges, success
• ·         Furry four-legged friends can be therapists and heroes

New dining at Busch Gardens Williamsburg

Busch Gardens is one of the few theme parks in the world where people do actually go there for the food. Reasonably priced, and well crafted, the food in Busch Gardens Williamsburg will exceed almost anyone’s dining expectations for a theme park. Even through you can get pizza, or a burger you can also find vegetables, roast chicken, smoked meats and hand crafted desserts. All sauces, meats and desserts are made on the premises.

There have been some changes in the Italy village during the closed season ending with ChristmasTown 2015. The former restaurant Ristorante Della Piazza has been changed with a new façade and menu and the new marketplace will open when Busch Gardens reopens March 20, 2016.

                                        New Marco Polo Restaurant under construction, BGardens Photo

The new restaurant Marco Polo Marketplace will contain Mediterranean, Italian and even some Asian menu items.  There will be several different themed stations and this will also include dessert and beverage stations.

The purpose of this was to help stream line meals for guests. The new design will make it easier for guests to get what they wish from a food court type atmosphere.  Busch Gardens Culinary stated “We are excited to offer a new open design that will enhance the dining experience for our guests with less wait and more dining options.”

Entertainment will continue as usual in this section of the park. The open air theater Il Teatro San Marco typically has musical and sometimes acrobatic shows several times a day. Past productions include Mix it up (a musical tribute with chefs) Dig it up and Elmo Rocks. Elmo Rocks is currently expected to play in the Globe on select days. Choo Choo Soul will headline on April 23, 2016 with 3 performances at Il Teatro, however other entertainment for this area of the park has not yet be announced. 

Over in Festhaus a new craft beer room has been opened. You can become a member of “The Stein Club” and with that you 1 of 300 numbered limited edition steins which will wait on a wall just for your use.  Each hold 1/2 a liter.

Pictures of the Former Ristorante Della Pizza in its glory, we shall miss you, but look forward to the new eats!

This year at Busch Garden's Christmas Town

8 million twinkling lights, over 1000 fresh cut trees, the scent of holiday food and displays with over 20,000 ornaments transform Busch Gardens Europe in Williamsburg into a Christmas Town for the 7th time since 2009. This year the holiday happiness continues with a few new additions to the already magical experience from November 26-January 3, 2016.

Christmas Town is an additional event not including on season passes, but is less than half the price for a typical visit. This is a time to visit the park for the seasonal delights and not necessarily the rides as many are not operating due to weather and maintenance. This season the park began with being open just on the weekends, but beginning this weekend it is open daily from 2-10 pm except for Christmas Day (December 11th until –January 3rd )

This year there is an all new ice skating experience with headliner, 2 time Olympic silver medalist champion Elvis Stojko T’was the Night. Based on the popular poem and will be shown in the Royal Palace open air theater in the France village.

If you are short on the Christmas spirit, this is the place to go. It is nearly impossible to not truly appreciate the beauty of the holiday season with 8 million twinkling lights, the sweet clean smell of pine trees and some of the best hot cider and hot chocolate you have ever had.

Each country has its own light theme and music in the back ground. England is very traditional with white lights, holly and red ribbons.  You will find parts of the park as a winter wonderland of blues. Ireland and Italy are themed as you would expect, Ireland has greens, Italy is very gold with angels. Fiesta Italia has become Holiday Hills and is a retro holiday theme with your classic red, green and white. One of the nicest spots in the park is when you walk the bridge between Italy and Germany to the song Let there be Peace on Earth while looking at the lights.

You should lap the park at least twice and see all of it. Be sure not to miss the Polar Pathway (the transition from England into Italy where Pompeii is). Riding the train around when it’s not super cold is really nice you can see a lot of the lights including what you can only see from the train. The Skyride is open as well and the above view is breath taking.

The park is to be explored and absorbed. Some of the attractions available are Santa’s Workshop, the train, Highland Stables and all the rides in Germany and Italy. Only Verbolten is open of the coasters and when it gets below 36 that will close for safety reasons same is said for the Nacht Tower (Mach Tower) 

Including the new ice skating show, there are a total of 6 shows to be enjoyed all in the spirit of the holidays. Scrooge No More in England is an adaptation of the Charles Dickens Classic A Christmas Carol, with technological enhancement from the upgrade done on the Globe last year. The lighting and sound in the festive show fully takes advantage of the new technology. At Fest Haus there is a musical holiday review show called Deck the Halls. In Italy is Miracles a winter themed acrobatic show. And over in Ireland is a classic retelling of the Christian “first Christmas” show at the Abby Stone called Gloria. 

Outside of the Fest Haus the 50 foot main tree will light up nightly to a musical score, properly named O’Tannenbaum.

Holiday Shopping

Shopping at Christmas Town can be part of the fun there is plenty of it around. The normal stores will be open selling Busch Gardens merchandise as well as holiday decorations and gifts. In Oktoberfest there is an outdoor market of items from local artisans, winery and ornaments. With all of the holly jolly around it makes a good time to pick up some special items, or get pictures done for your holiday gift giving, regardless of what you celebrate. Cashless wristbands are offered and can be purchased once you enter the park to make your day a bit easier. You can pre pay a set amount or link to a credit card depending on your preference and needs. If you pay up front with cash and don’t use it all, it is refunded to you at the end of your night. You can use these for all purchases including dining.

Dining

Food is always part of the fun and exceptionally delicious at Busch Gardens. The menu is relatively the same but gets tweaked for the season.  Some examples of holiday themed foods are turkey, ham, stuffing, hot chocolate and hot apple cider. You can purchase a Christmas Town themed refillable mug for about $6 and get as much hot chocolate and hot cider all season long for $1 a refill. For Christmas town you will also get to enjoy holiday treats like S’mores, Fondue Fudge, seasonal soups in a bread bowl. Over in France you can get some Smoke house deliciousness outside from smoked turkey legs to smoked sausage sandwiches with whatever toppings you like (kraut, cheese, peppers, onions, chili, all of the above)

Santa’s Fireside Feast (Castle O Sullivan in Ireland) is a holiday buffet and interactive show with Santa. You can meet Santa, tell him what you would like for Christmas and get a picture. He also will read everyone a story, there is a small show with this including elves but you are part of the show. Ms. Claus will bring cookies out for dessert. It was a real delight and a must for kids. You can book this for lunch or dinner, bring your appetite the buffet includes a carving station of turkey or ham, Swedish meatballs, homemade mac-n-cheese, stuffing, sweet potatoes, and Trapper’s Smokehouse Chili. Plus there is plenty of food for kids plus a salad bar and more.

Admission can be purchased for a $35 fun card which allows multiple visits, pass holders should log on the Busch Gardens website for deals on admission which can vary. Parking is complimentary for pass holders, and $15 for everyone else. Busch Gardens becomes Christmas town by a 70 person team in the few weeks at the end of Howl-O-Scream and is the largest Christmas light event in North America in the 100 acre park.

For more information

www.seaworldparks.com/christmastown