PBS Kids Dinosaur Train Preview Party

Another lazy summer Saturday. . .

NOT

Up at 0700 to go to Mid-Town for the Dinosaur Train preview party at PBS Studios.

These are the times when I really love living in the HotLanta suburbs. We are close enough to everything and we get invited to lots of special events at Zoo Atlanta, The Georgia Aquarium, the Atlanta Botanical Gardens and now, its seems, Georgia Public Broadcasting.

Although, I'm not quite sure why we got invited to this one.

I did subscribe to GPB.org a few months ago during one of their Britcom telethons (wanted the best of the Britcoms Book) and, of course, I rarely watch TV, except for GPB shows, like, ummm the Saturday night Britcoms, Masterpiece Theater, Georgia Traveler, the Antiques Road Show, Sherlock Holmes, the Complete Jane Austen etc. etc. etc.

I also watched all of the PBS shows from before I could walk, raised my own kids on them and invested tons of money in PBS Kids paraphernalia.

However, when we arrived at the studios rather early (I have never been on time for anything in my life, either 30 minutes early or 30 minutes late), we were directed into the Boardroom and a very enthusiastic lady shook my hand, introduced herself and asked me "Are you one of our Mommy Bloggers?"

HUH????

Well ummmm. . .

I'm a mom and I blog. . .

And then I heard another lady whisper "She's one of the others. . ."

Apparently not, one of the beautiful people!

And little did they know, they were SOOOOO right.

That's me, one of the others, a special needs mom, always on the outside of the Boardroom looking in.

In this case, however, the crafts were outside the Boardroom and you couldn't have kept Taz and his friend Zachary in that Boardroom for a $1M bucks.

Seriously folks, Boardroom jokes aside, when you're a special needs mom, you live your life in the Trenches, not the Boardroom, Ballroom or Cinderella's Castle.

Every day in the trenches is a new adventure, a new trial of wits, understanding and patience and a new realization that life in Holland may be tough, but its worth every minute.

I wouldn't trade my view from the Trenches for anything!

Nianya

P.S. Taz quickly got over his ASD fit about not getting a bag of goodies on the way out (they went to the beautiful people) when he found out that we were going to the Botanical Gardens and then Michaels for crafts. Also, he happily munched his Kinnikinnick GFCF donuts, while all the beautiful people ate their Krispy Cremes.

Mom, where's the dining room. . .

That's what my 6.5-year-old son asked me today when he brought me a handmade present and asked me where to put it. I laughed and told him it's the room with the Christmas tree.

I had to laugh, because we have not used the dining room, as such, since long before he was born. Then I started thinking about all the changes we have made in our house in the past 10 years.

We started out with the typical house format: an front entry-way with a living room on one side, and a dining room on the other. A downstairs bedroom and bath, a 2-story great room and a kitchen. The second floor had three bedrooms, two baths and the traditional master suite, plus a tiny home office over the garage.

That was back when we had only one child, a toddler, and autism was not a word in our vocabulary. We used the dining room a couple of times for extended family dinners and birthday parties, we turned the living room into a music room to house my antique grand piano and turned the downstairs bedroom into a living room. In other words we had way more space than we needed.

Over the course of the next 4-5 years things rapidly changed. I started telecommuting 3-4 days per week, my daughter was diagnosed as autistic, rather than simply ADHD, and we added a son to our household.

We turned one of our upstairs guestrooms into a nursery, we turned our living room/TV room into a playroom, complete with rubber mats for our son to play on, because he had severe reflux, and we expanded our upstairs office into the dressing room to accommodate multiple computers, fax machines, printers, scanners and several shelving units overflowing with office supplies.

We stopped any attempt to have meals together, because our son was allergic to milk, wheat and everything else on the planet. We segregated our kitchen and pantry into GFCF safe zones, labeled everything and expanded our food storage into the garage with shelves for dried and canned foods and an extra freezer to store our son's GFCF foods, which we had to purchase in bulk from health food stores and websites.

We never used our dining room for family gatherings, because our son didn't understand why he couldn't eat the same foods as the rest of us. We fed him separately and ate our own dinners, while he was watching TV in another room or after he went to bed.

A couple of years later, we started allowing our daughter to sleep downstairs in the TV room on the weekends as a reward for good behavior during the week. At the age of 8, our daughter fit perfectly on a kids' pull-out couch, which functioned as extra seating during the day. We moved our then-toddler son's expanding collection of toys and puzzles to the great room and gave him the kitchen desk, complete with TV/VCR and all of his favorite Baby Einstein videos to watch while he ate.

This worked great for a couple of years. We even got to the point where we had an occasional meal "together," with three of us at the kitchen table and our son happily ensconced at his desk with his GFCF food and videos.

Then the kids started growing up. My daughter outgrew the pull-out couch and started sleeping on a blow-up mattress. The TV room became her extra bedroom/locker room complete with her favorite character accessories (Pokemon, Star Wars, Sponge Bob Square Pants and most recently Indiana Jones) all lined up in rows on the tables, couches and floor etc. . . in classic autistic fashion.

My son outgrew the desk and needed space for all the crafts and art supplies we bought to entertain his mad-scientist/craft-boy/severely ADHD brain. He took over the great room, kitchen floor and 1/3 of the garage. We also gave up two of the closets in our master suite to house his craft supplies, which we buy in bulk at the dollar store, Big Lots and Michaels.

For the past two years we have been bursting at the seams and were planning to finish our basement to give the kids and us more space.

Fast forward to the present and things have changed drastically. The economy tanked and ended any dream we had of finishing our basement in the next 10 years, I added photography services to my weekend/nighttime home printing business, which necessitated additional equipment that overflowed into our bedroom, and we had to hook up the Wii, which my daughter bought with her own money, to the little TV in her brother's bedroom, because he was the only one in the house, who had any space left to move around in.

So, two months ago, I cried uncle and decided to take back the house (i.e. rearrange it).

• We had a huge yard sale to get rid of extra toys, unused kitchen appliances and furniture;


• I moved the big TV out of the "locker room" into the great room, hooked up the Wii there and rearranged the couches to maximize the floor space;


• I used to money from the yard sale to buy a designer desk and tables from Big Lots at 75% off the original manufacturer's price and set up a stylish downstairs office with all of my printing equipment;


• I reorganized the upstairs office to maximize our room and storage space and put a combination lock on the craft closet in an attempt to keep our son out of the master suite;


• I added risers to my son's bed so that we could store all his toys underneath in movable containers, which also helps to keep him occupied in his room at night until he winds down and falls asleep; and


• I set some strict rules for both kids with regard to keeping their rooms, the great room and the kitchen in order.

It didn't take long for my daughter to get the hint that I meant business after I put a lock on the TV/Wii cabinet and started changing the combination every time she forgot the rules.

So what about the dining room you ask and why have I had a Christmas tree set up there since early October?

Long story short, I decided the turn the unused dining room into a weekend photography studio starting with a Christmas set up.

On the bright side, I have tripled my tax deductible home business space and it's a lot easier to keep the house clean. On the downside, I now need an extra freezer to store my son's food, because my husband and daughter have taken over his freezer space to store their frozen foods from Sam's Club, Costco and BJs and my son's screaming, because he's out of his favorite breads, which I buy in bulk from Kinnikinnick in Canada.

Give me a break, I hate cooking, we all eat different meals anyway and it costs more to buy the ingredients than it does to buy gourmet frozen dinners from the wholesale clubs.

Nianya

P.S. The tax deductions are about the only real benefit I get from my printing/photography business. I have a full-time day job, very little free time and a bad habit of donating my services to various night and weekend charity projects.

To Blog or not to blog. . .

That is the question.

I started this blog with the hope of reaching out to other parents, who, like me, struggle to raise their special needs children. I tend to blog only when inspired, which usually means that someone or some corporation has ticked me off.

I have noticed that I get about 100 page hits every time I write a new blog entry. Discounting my 10 or so faithful friends and maybe 5 relatives, that means I have about 85 avid readers. I need more.

At this rate, to reach my goal of 1 million hits, I'm going to have to write nearly 1,000 more entries. So I had better get cracking.

Today's topic: $10,000 birthday parties, $25,000 bat mitzvahs and hedge fund managers, who make $1.4 million per hour spending other people's money. I must be in the wrong profession.

My son wanted to go to Chuck E. Cheese for his birthday. I wanted to arrange a zoo party where his friends and classmates could get an educational experience, while having fun at the party. I considered the following options:

• $350 and up for a Chuck E. Cheese party for 20-30 kids - where consequently my food-allergic son would have to eat his dinner in the car.
• $400 - $600 for a party at the zoo, depending on whether I ponied up for the other kids' parents to enter the zoo as well.
• $325 tax deductible donation for the Zoo Mobile to come to our son's school and give a fun and educational demonstration complete with live animals.

Guess which option I chose. The in-school party required no invitations, I did not have to worry about RSVPs, I spent less than $100 more for zoo-related crafts and goodie bags, pizza delivery and Sam's club cupcakes, and my son, who ran and hid when they brought out the corn snake, happily ate his GFCF lunch with his friends.

So what about these $10,000 birthday parties? I doubt the party pictures were any cuter than my son on video running from the snake and I could help dozens of special needs children through my ministries with that kind of money.

Most special needs parents learn very quickly to choose the least stressful and in many cases the least expensive option. I do worry about money, but I will always choose the tax deductible option, even if it means more money. The kids have fun no matter what.

Why don't these parents rent out their zoo or local aquarium and invite underprivileged or special needs children to the party. The parents get a big fat tax write-off and their children get a wonderful lesson in learning about others, while having a great time. It's no different than spending Thanksgiving at a soup kitchen, instead of sitting down to a 10-course meal at a 5-star hotel.

I'm preaching to the choir. The $10,000-party parents aren't the ones reading my blog and neither is the $3 billion per year hedge fund manager. If you are reading, please make a sizable donation to Lifeover Ministries.

As for my faithful followers, send me some inspiration. I still have 999 more blogs to write before I reach my 1 million-hit goal.

Nianya

The Americans with Disabilities Act

covers food allergies.

So why does Chuck E Cheese prohibit outside food other than cake, cupcakes and ice cream?

PROFIT: Pure and Simple!!!!

Their response to my inquiry:

"The only outside food we can allow inside is cake and ice-cream. This is a policy and there are no exceptions. Again, it is a healthy code violation to allow guests to bring in any other outside foods.

If the food allergy does not allow the guest to consume any items on our menu, we recommend the guest eat before they come to the restaurant.

Thank you, Guest Relations"

If allowing only outside foods, such as cakes and ice cream, which encourage parents to host expensive birthday parties at their facilities, isn't profit based discrimination, then I don't know what is.

They could ban all outside food and I would have no argument.

I THINK NOT: Banning cake and ice cream from their birthday parties would not be a very good profit making decision.

So I am left with a choice: feed my child before his party or host the party elsewhere.

Monkey Joes here we come!

Nianya

There is no fury like a Special Needs Mother . . .

whose child is denied access or turned away do to his/her disability.

Whether the child's disability is highly visible or not, there is nothing worse than being asked to leave a restaurant, play place or other commercial establishment, merely because they cannot accomodate your child's special needs.

For the first few years of our son's life, we avoided birthday parties and play dates, because of his food allergies. We didn't feel that it was fair to expose our son to birthday cake and pizza etc . . . when he could not eat them.

During the past two years, however, we have gradually learned that it's okay to take him out. We just bring his food with us and bring him a sweet treat in lieu of the cake.

Sometimes we get funny looks from the waiters when we order our own food and I either take his homemade food out of his bag or give him a GFCF Happy Meal (plain burger with plain apples). Once we explain his allergies, they are usually very helpful and understanding.

Today, I ran up against a brick wall. . .

a manager at Chuck-E-Cheese, who refused to allow us to bring in our son's GFCF Happy Meal, even without the bag, so that he could eat dinner with his friends during his own 6th birthday party. Never mind that we spent BIG BUCKS on tokens and food for everyone else. Our son had to leave the party and go out to our car to eat his dinner.

When I explained his allergies to the manager, he was unsympathetic and said that everyone would start claiming food allergies just so they could bring in their own food. I think not.

No one wants to be allergic to half the food on the planet.

I'm very grateful that my son was so hungry by that point that he didn't think twice about going outside to eat. Most 6-year-olds would have thrown a fit. I would like to say that next time I go there, they will be more accomodating, but it's going to be a very cold day before we go back.

Nianya

We've come a long way . . .

Several weeks ago, I was browsing the new improved health food section of our local Kroger's store, which now includes many of our favorite GFCF (gluten-free/casein-free) dry and frozen foods. Another mother overheard my comments to my husband about the relevant merits of Ian's Gluten Free French Toast sticks vs. Ian's Gluten Free Waffles and asked if we had a celiac child. No I said, just a 5-year-old picky eater with food allergies, asthma and SID (Sensory Integration Disorder) issues.

I suddenly found myself telling this women all about our favorite GFCF foods, because she mentioned that she was having trouble finding gluten-free foods for her 9-year-old, who was recently diagnosed with celiac disease.

When we started our GFCF journey more than five years ago, the new federal labeling standards were non-existant, you couldn't tell if a product contained milk, casein or whey and I constantly had to tell my husband not to buy anything for our son, unless I gave him a specific product name.

Of course that meant not grocery shopping for the GFCF kid, unless you were lucky enough to live near a health food store and even then, you couldn't always trust the store's supposedly Gluten Free products. A sales person once tried to convince me that spelt was wheat-free. When I took exception to her comment, she informed me that most wheat-allergic people are not allergic to spelt. I think I'll stick with Wikipedia's definition .

Back then, I felt like a freak in a milk & wheat world and, when I told people that my son was allergic to milk and wheat, they looked at me in horror and asked "What does he eat?"

Well, until age 16 months, he ate no solid food.

Then we discovered Kinnikinnick breads, Gluten Free Pantry mixes and Roberts Tings. A couple of years later, after bi-monthly trips to the only really good health food store within 30 miles, I discovered that we could purchase many of our favorite GFCF foods cheaper on the internet.

• Amazon sells a wide variety of GFCF and Gluten Free foods and, if you sign up for Amazon Prime, you get free 2-day shipping on eligible products. Amazon also tracks your favorites and notifies you when they are on sale or subject to a special offer.
  
• Kinnikinnick allows you to order up to $200 in foods and pay only $10 in shipping, plus they give you GFCF points toward future orders. (Kinnikinnick is now available in select grocery and health food stores. The prices are considerably higher than buying directly from the company; however, I recommend trying their products locally before you buy in bulk.)
  
• Ener-G and other GFCF sites offer sales and promotions on various GFCF products.

Buying in bulk doesn't have to be difficult. If you don't have a pantry (or your pantry is already overflowing like mine), store the non-perishible items in your garage, get an extra freezer, if needed (our's cost < $150), and invest in a food saver vacuum sealer, which keeps breads and other foods fresh in your fridge or freezer for months. This may seem overwhelming, but, if you're like me, you probably don't have the time (or in my case the talent) to cook GFCF foods from scratch. (Case in point, it took me 3 years to create an edible birthday cake.) And, many of our favorite foods come pre-packaged in small sizes for car trips, school lunches, eating out etc. . .

Word to the wise, let your child choose his/her favorites. Not everything will be a hit. I once got a great deal on gluten free apple and blueberry fruit bars from Amazon. My son (the world's pickiest eater) hated them and they stayed in the pantry for months, until my athletic tween, who will and does eat everything when she's hungry, discovered them. They are long since gone.

1. Check with your local store about return guarantees, many stores will take an opened item back if you or your child aren't satisfied.
2. Don't invest in a bread machine, mini-fryer or other small appliance for GFCF cooking, unless you will use them frequently. If you want to try a new recipe, such as a GFCF coating mix, borrow a fryer from a friend or follow the pan fried instructions. (Our deep fryer has been on the pantry shelf, since we discovered after only one week that it was more trouble than it was worth and the GFCF bread mixes we tried in our bread machine weren't as good as the store bought breads.)
3. Be on the look out for sales and manager's specials. You will save money in the long run.
4. Sign up for e-mail alerts and coupons on your favorite GFCF food sites. Many of them track your purchases and highlight your favorites when they are on sale.
5. And, last, but not least, create a GFCF safe kitchen. Set aside a counter area, cabinet or pantry shelf, use matching or easily identifiable containers for loose foods, such as chips and snacks, and label all of your child's GFCF foods. (My son has a GFCF corner and pantry shelf dedicated to his foods, all of which are labled with his name and our personal logo. That way relatives, visitors and sitters know what they can and cannot feed him.)

As I said, we've come a long way. The GFCF diet has finally come out of the dark ages and is fast becoming a main stream topic. New Federal labeling rules require foods to state in plain terms whether they contain certain allergens, such as wheat, milk, soy or peanuts, many manufacturers now state that their products are produced in plants where items containing such allergens are prepared and restaurants/fast food chains are now listing food allergen information on their website.

Stay tuned for my next post on the GFCF diet in a fast food world.

Nianya