Too Blessed to be Stressed

Last Thanksgiving, I bought a coffee mug at a Christian Book Store that says "Too Blessed to be Stressed." I joked to my husband that they had it backwards. We're too stressed to be blessed. We never get a break and it seems like we always take two baby steps forward and three bigfoot steps back.

If you're a special needs parent I'm betting you know just what I mean. I call it Nianya's Law. My own personal version of Murphy's Law:

Everything that can possibly go wrong, will go wrong, at the worst possible time.

For instance, I started reaching out to other special needs parents after what I call my rock bottom week. My then 18-month-old son was hospitalized with croup/asthma less than two days after I had oral surgery, the hospital had no idea how to deal with our son's GFCF diet and we felt like we we're alone with no one to turn to for help.

Since that time, more than four years ago, I have hit rock bottom several times. Nianya's Law never fails me. It's the one thing I can count on.

Just this past Sunday, I mentioned the hospital croup story to the Elders at our new church.

JINX.

I should know better.

Sure enough, less than 12 hours later we were headed back to the ER with another round of croup, the spare tire that my husband put on the car the night before went flat as we drove out of our driveway at 3:30 AM, the only hospital open was packed with flu victims, the hospital told us our insurance was expired, we barely got out of there four hours later in time to get our older daughter to school and, to top it all off, the whole time we were there, I kept thinking. . .

NOT NOW PLEASE. . . we've been invited to the Today Show taping at the Georgia Aquarium tomorrow morning.

I should also know better than to put my pride above my child's health, but we we're all so excited about the today show. We had special signs and T-shirts made up for the kids and it was such a great opportunity for our autistic 12-year-old.

So I prayed.

• I was afraid my son would end up in the hospital again. He didn't!


• My daughter and I made it to the Today Show taping, despite a broken-down tractor-trailer on the Interstate and everyone knows that, if there's a tractor-trailer incident on an Atlanta freeway, you might as well give it up. Not this time!


• My husband and I succumbed to the flu this week, but Not at the same time!


• My daughter did not get sick. KNOCK ON WOOD!

Things could have been worse. We have two cars, so we made it to the hospital, despite two flat tires. We were able to take turns playing Dr. Mom to our son and each other. We have wonderful friends, who helped us out, when we needed rides to and from school. We have really good insurance. I guess it was a computer glich. And most important, we have our faith.

This week was truly an example of the power of prayer at work and we are truly:

TOO BLESSED TO BE STRESSED

Nianya

Autism: A World without Shades of Grey

I can't imagine living in a world without color, dimension or multiple possibilities. A world that is only black and white and never anything in between. My daughter's world.

Good or bad, true or false, love or hate, yes or no, never maybe.

I'm a very cynical person with a dry sense of humor. I rarely agree with others and love to debate or argue about controversial topics. (Give me a break, I'm a lawyer)

Nevertheless, I am learning, slowly but surely, to watch everything I say around my daughter. She believes what she hears. Literally.

1. Bad and country in the same sentence, means I hate my country.
2. If I like someone else's house, I obviously hate ours.
3. No money to eat out, means that we're poor.
4. Hurry up, or you'll be late for school, means she's already late.

Today, my daughter was watching the history channel and heard that the world was going to end in 2012. She told me that it wasn't fair, because she'll only be 16 years old and can't join the Army until she's 18.

I was tempted to reply that, if the world is going to end in four years, I'm going to Party Like Its 1999. Instead, I told her that the world was not going to end. She must not have believed me, because she asked her father too.

I don't know if my daughter will ever understand shades of grey, but I will keep trying to explain them and hope that one day, when I ask her a yes or no question, she'll say MAYBE!

Nianya


Links:

Taking Giant Steps for autism
Living the Good Life with Autism
Autistic Spectrum Disorders

A Mother's Guide to Survival in a SID World . . .

Say what?

Sensory integration disorder (SID), also called sensory processing disorder or sensory integration dysfunction. In our case a dysfunctional family.

I prefer to dress in grey, black or tan cotton clothing, since I can buy 3 of each favorite clothing item at Sam's Club for the price of one item at the mall and I always have one on, one off and one in the wash. I know that the black shirt, which I have on today is clean, even if it looks just like the one I wore yesterday, and, I know who my true friends are. My friends are the ones, who think I'm eclectic, while everyone else thinks I'm nuts.

If you are a parent of a SID child, you probably aren't laughing about my attempted humor.

Try explaining eclectic to a 12-year-old child, who dresses in the same clothing every day, because it's the only way she can function. Ask me how many times I have spent $$$ for pants for my autistic daughter, because they were on sale and she swore those were the exact pants she wanted for school next fall. Fast forward and ask how many times my daughter went ballistic when I informed her that it's now time to wear those pants. It's not her fault, she wants to fit in, but she can't function when her clothes don't fit or feel exactly right.

A couple of years ago, my daughter wore the same hooded sweatshirt to school every day, because it was plain gray with SOCCER on the front and soccer was her thing back then. This year it's an old army jacket from the surplus store. Yup, you guessed it, now she's into Army stuff.

Ironically, both mother and daughter are in fashion this year. Eclectic is back in style and lots of pre-teens are into the grunge look.

If you are not the parent of a SID child you probably stopped reading this blog when I mentioned a 12-year-old that refuses to wear what's in her closet. If you're still reading, let me ask you this? Have you ever seen a 12-year-old freak out (i.e. have a complete panic attack) before getting out of the car at school, because you told her to wear her jacket and half the other kids at school don't have one on?

Again you probably think this is normal pre-teen behavior. To a point it is, but, with a SID child, the inevitable panic attack can affect her entire day. She may stop communicating, cry for hours or shut down completely so that she spends the entire school day in her own world.

What's a parent to do when it's cold and rainy and your child refuses to wear a coat?

• Do you let them learn their lesson and freeze in the rain?
• Do you force the issue and make them wear the coat, which inevitably ruins their day and makes you the bad parent? or
• Do you sit in the car and try to reason with them while the other parents in cars behind you honk and yell for you to get out of their way?

The answer: All or None of the above.

The truth is, there is no good answer. Each SID child is unique in his or her own way and each SID episode plays out differently. As the parent of a SID child, you can stick to a rigid routine and live your life quite comfortably (in a plastic bubble), but you can't control the weather and sooner or later, no matter how hard you try, the bubble will burst. Here's what I do when that happens:

• Give your child a choice, whenever possible, but limit the options. Preferably no more than 2. Tell her she has to wear a coat, but let her choose which one and, if the one she wants is in the laundry, pull it back out and wash it later.
• Give your child a reason, if you can't give him a choice. Tell your son he can wear his crocks to the playground, but he has to wear his tennis shoes to school.
• When you find a clothing favorite, buy in multiples while you still can. This may mean paying full price, rather than waiting until the right pants go on sale. It's still cheaper than a closet full of clothes your daughter never wears. It also helps to leave the tags on all clothing and keep your receipts. Most stores will take clothes back and give you a refund or store credit.
• When all else fails and you're pulling your hair out, give yourself a time-out. Lock yourself in your room with your favorite beverage, food and book/TV show (or in my case all of the above, plus my Blackberry and laptop). If you can't get away in your own house, then go out for awhile. Go for a walk, go for a drive, visit a friend or go hang out at Starbucks. And, finally, if you take your cell phone with you, make sure you have caller ID. If your husband calls, don't answer the phone. Let him pull his hair out for an hour or two.

Stay tuned for more survival tips and remember this: If you leave Dad in charge you will most likely return to a dysfunctional house (chances are he didn't pick up the mess, feed the kids or put them to bed). If he did, he's a keeper.

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

Welcome to my World . . .

If you are a parent of a special needs child, then I'm willing to bet that you've heard some version of the poem "Welcome to Holland," which has been adapted over the years to fit many special needs children and parents. Nearly 6 years ago, I found myself on a plane to "Holland," except that it never seemed to land. I felt like we were circling Siberia.

My son was premature, had severe reflux and was allergic to "everything on the planet." He survived on specialty formula until he was 16 months old and then goat's milk, until we finally found the gluten free/casein free (GFCF) diet.

I met an angel, in the form of another special needs mother, who gave me a wealth of information on the GFCF diet, directed me to web sites where I could learn more about living with the GFCF diet in a milk, bread and potatoes world and gave me a cyber shoulder to cry on when my son passed another birthday without a cake.

Imagine spending three days with your child in the pediatric ward of your local hospital fighting croup and asthma and they have no food to feed him. They had no dye-free jello and looked at me like I was crazy for asking if they could make a scrambled egg without milk or butter.

Welcome to my planet!

I spent the first two years of my son's life in a holding pattern over "Holland" trying to find a safe place to land. Then, just when I thought it was safe to exit the plane, my then 9-year-old daughter was diagnosed with high functioning autism. In reality, she is high functioning only because we learned very early on in her life that we had to live on a very strict schedule with her or our entire world would come crashing down on us. We used to think she was a "difficult" ADHD toddler.

If I'd only known then what I know now.

Hindsight is not always the best sight, however. It turns out that we instinctively helped our daughter function on a higher level by involving her in sports (gymnastics & soccer) at a very early age to improve her coordination and by enrolling her in a Montessori pre-school and elementary where she could learn at her own pace and in her own space. To this day, after years of speech and social therapy, my now 6th grader still has trouble sitting at a desk, raising her hand and answering questions. Imagine what she would have felt like in public Kindergarten when she was practically non-verbal.

Austim used to evoke an image of a child sitting in a corner banging his head against the wall and I have a hard time explaining to people, who don't know much about autism and who don't really know my daughter, that an autistic child's behavior can have varying degrees. My daughter seems quite "normal" on the soccer field, as long as she knows the exact time and place of the game, the exact color scheme of the uniform she has to wear and whether or not both her parents will be able to attend. But, a sudden change of plans can send her into a meltdown worthy of the terrible twos. Try and explain that to spectators.

So now you have a brief introduction to "My World." We live on a different planet in our house. A planet where it's safe to be on the autism spectrum, you can always find something gluten free and casein free to eat, Mom knows how to make an "edible" GFCF birthday cake and we don't rush to the ER for a middle of the night asthma attack. Mom knows how to use a stethoscope, always has the asthma meds and nebulizer ready and knows when to say UNCLE and head for urgent care.

Our lives may be hectic, but we've long since landed in "Holland," learned the lingo and learned how to navigate the back streets.

Nianya

Out of the mouths of babes. . .

It's New Year's Eve and we find ourselves once again at the Zoo for free entertainment. Actually, its better than free, because we got a big fat tax deduction for joining, not to mention free train and carousel rides and invitations to neat events, like the Noon Year's Eve party we attended today.

Naturally, given all the past week's hullabaloo (rightly so) over zoo tigers, we made a point of visiting our own local big cats today. As my son sits down in front of the viewing window for a photo op with the male tiger asleep behind him, he puts his finger to his lips and tell everyone "Sshh, don't wake the tiger." I swear he doesn't watch the news!

I really need to rent this child out for commercials and make him pay his way. As it is, I barely have time to blog about his dangerous adventures, which today had something to do with a bag of very sharp nails from Home Depot. Sorry, dear readers, that's a story for another day.

HAPPY NEW YEAR

Nianya

Entertaining Kids on a BUDGET. . .

Step 1: Buy creative crafts at bottom basement prices.

Step 2: Look for Maximum fun and Minimum Mess.

Step 3: Make sure the FUN parts are reusable!

Otherwise, you may get stuck pounding the pavement, roaming the stores or surfing the internet for replacement parts at exorbitant prices.

I was all psyched up to write about this great toy we found at an outlet toy store on the day before Thanksgiving for practically nothing. Sure enough, my mad scientist 5-year-old loves it. I'm having to hide the foam pieces so he doesn't use them all up in one day.

My resourceful husband, suggested that we get some back up pieces for when we run out. Easier said than done. You get what you pay for. It never fails. Buy an AS SEEN ON TV item on clearance and you can bet it isn't available anywhere else. Not at a decent price anyway.

Nianya

A Very Merry Christmas to all . . .

Mass chaos, there's no other word for it. I have found over the years that it's best to curl up in a safe corner and watch the stampede. And sooooo, we survived another Christmas, barely.

I am very proud to say that for the first time, we have escaped the holiday crush without a mountain of debt. So what if we have to eat macaroni and cheese until the next pay day, at least we aren't paying interest on it. My mission for the New Year, get in shape, finish the sequel to my book and sell everything that isn't tied down to pay my way to the Grand Canyon for my daughter's school trip.

If you would like to know more about this once in a pre-teen lifetime experience please check out the Grand Classroom website http://www.grandclassroom.com/. Donations to the cause are welcome and all donors will receive a deluxe DVD of our trip. That is, assuming that I can learn how to use my DVD editing software. If not, I may have to outsource my amateur videos to China for assembly.


That's all for now folks, have a very Merry Holiday and prosperous New Year.


Nianya

Merry Christmas Eve

A lesson to be learned. . . If you want to avoid the crowds on Christmas Eve, go to the Zoo, not the Mall! Also a good idea if you have Autistic, ADHD or just plain hyper kids (BTDT with all three). Let's face it, they all over stimulate at Christmastime.

Nianya

Welcome Friends

As most of you know, I am the author, editor and publisher of the Magical Mischief Maker and am currently working on the sequal "The Faerie Princess."

Check out my new You-Tube location http://www.youtube.com/Nianyac and stay tuned for our great summer adventure/science trip to the Grand Canyon (www.grandclassroom.com).

Nianya