One Gigantic Step Forward. . .

I don't know about the rest of you, but I think I finally hit rock bottom last week. I woke up one morning and my bank was in the middle of a squabble over its assets, the stock market was tanking faster than light speed and there was a scorpion in my bed.

No. . .I'm not referring to my husband

and

Yes. . .It bit me. . . several times.

I had no where to go but up.

I also had a family reunion to look forward to during the upcoming weekend, which required me to fly with both special needs children, one of whom has never flown before.

Long story short: They rededicated the Chapel at Franklin College in Indiana after my grandfather, who was president there back in the 50s.

I pulled out the rest of my thinning hair worrying about everything that could go wrong, since Nianya's law never fails me: If anything can go wrong in a special needs family, it will, at the worst possible moment.

Sure enough: My son had an asthma attack, then he suffered a massive nose bleed, brought on by the necessary nebulizer treatments and in-flight altitude changes and the pumpkin muffin I ate for dinner Sat. seriously disagreed with me.

SERIOUSLY!!!

Luckily, I stopped sweating the small stuff years ago and, to tell the truth, things turned out better than I could possibly have imagined.

The one thing I really stressed about was my autistic daughter's interview with the President of Franklin College, Dr. James G. Moseley, and, I have to say, I have never been more proud of her. I arranged for her to ask the president a few questions, so that she could prepare a presentation as credit for the school time, which she missed while we were traveling.

And, while my daughter has come along way, since we started social skills classes, she has never carried on a conversation with someone she just met, until now.

Since you can't hear her questions on the video, I will post them here:

1. How long have you been president of the college?

2. What do you like most about the college?

3. Do you have a soccer program?

4. Do you offer athletic scholarships?

She asked these questions without any difficulty and responded to the president's continuing conversation.

In an autistic child's world of 1 baby step forward and 3 big fat steps back, this is phenomenal. At least to me, her proud mother.

Nianya

Shedding Layers . . .

A comment this evening made me realize that I have been doing this for some time now. Metaphorically and physically shedding layers to simplify my life.

In one way or another, we are all being forced to shed our excess layers and return to a time when keeping up with the Joneses meant white washing our picket fences and tending our lawns, rather than driving the biggest SUV, owning the newest HD TV and getting the hottest toy for Christmas.

Honestly, I gave those excesses up years ago. We stop buying new cars, taking expensive vacations and wearing designer clothes to keep our kids in private school. We stopped shopping at the malls, boutiques and even the local grocery stores in favor of wholesale clubs and deep discount retailers. We stopped using credit cards and started using cash or direct debit and we still can't survive in the current economy.

So now we're facing the stress and pain of shedding the tougher, deeper layers. Giving up our dream of finishing our basement in the next couple of years didn't really hurt as much as I thought, but coming to the conclusion that our special needs son will have to leave his private school and start attending the local public school really bites.

We want the best for both of our special needs children and we love the school he attends, but we simply cannot afford his private school and necessary supplemental tutoring. It's really simple. That money can help pay bills, until the economy turns around and we can start to rebuild our savings.

I know I have no right to complain, because we are far better off than most, but it's always a struggle to make the right decisions in the face of our children's special needs. We nearly choked when we had to put our daughter's social skills class tuition on a credit card and now we're having to pay for our son's tutoring, our medical co-pays and our prescriptions the same way.

We've been fighting for our autistic daughter's rights in the public school system for three years now and she is making slow, but steady progress. We kept our son in private school, because we did not have the energy to fight for two children at the same time. Now we're going to have to find the strength to do so.

I'm praying that, in the long run, we're making the right decision, because we have no choice.I'm also praying that the economy turns around soon, because this is the last big layer that we have to lose.

Nianya

Spiritual Photography. . .

I have always been an avid photographer and still remember the joy of taking my first pictures with a B/W camera, which were inevitably off-center, out-of-focus and lop-sided.

Now, of course I have a great camera and an awesome telephoto lens , I've learned to hold the camera straight and I have a great selection of digital photo editing programs through which I have mastered the art of photo fixing.

Seriously though, I find a great deal of peace and joy in taking and editing digital photos of both everyday events and once-in-a-lifetime experiences. This summer, I was absolutely awed by the power of the Grand Canyon and am still amazed by all the spirituality I see in my photographs of our trip.

Tonight, during our evening church service, it suddenly occurred to me that I could share my joy with others through a Christian Photography group. I could say that the thought just popped into my head, but I know better. God works in mysterious ways and I try to remind myself frequently that my inspiration comes from above.

Although I share my inspirations with my husband and a few close friends, I'm usually very uncomfortable in sharing my ideas with others. I was surprised at the interest my idea raised this evening. I don't know whether the idea will blossom into a full-blown group, but I do know that I want to broaden my horizons and start to reach out through my experience and knowledge of digital media.

My life as a special needs parent is frequently off-center, out-of-focus and lop-sided and I spend too much of my time focusing on the individual trees, rather than the forest as a whole. Through the camera lens I am able to capture every detail, both big and small, evaluate them on my computer and try to see the world as God sees it.

I hope to share this vision with others in some small way.

Nianya

Back off Biden. . .

How dare you attack parents of special needs children based on their views regarding stem cell research?

Regardless of my opinion on that very sensitive subject, stem cell research is not going to pay for my children's special needs. Start talking about the special needs services you intend to provide, IF you get elected, and I will start listing.

Nianya

Angry Mom of Special Needs Children. . .

I try to avoid politics on this website, because I don't need more controversy in my already overburdened life as a mother of two special needs children. That said, however, I never miss the chance to get on my soap box to rebut attacks against special needs children and their parents.

It has been said that the 2008 presidential election will be decided by the angry white male. After last night, I'm betting that you can add the angry working mom of special needs children. How dare anyone insinuate that a mother cannot work and raise her children at the same time. Last time I checked, I had no choice.

I work for the money and insurance to pay for my children's special needs. I don't see the Democrats offering to pay for my autistic daughter's social skills therapy or my ADHD/SID/Asthmatic/GFCF son's private school, tutoring, multiple medications and special diet.

This may be the first time in my life that I actually vote for a candidate, rather than against one.

Nianya

Oh Captain, My Captain. . .

I had one of those incredible special needs Mom moments last weekend during my 12-year-old autistic daughter's first soccer tournament of the year. My daughter has been playing soccer, since she was 5 years old and has been on a competition/traveling team since age 8. Until last spring, we've had our ups and downs (lots of downs) with players and coaches, who did not understand her inability to communicate.

Now, my daughter loves her new coach, she enjoys going to practice and she gave about 1,000 percent at the tournament. I love having the other parents ask: "What are you feeding her?"

"Jalapeno Pancakes with Habenero sauce," we jokingly respond. That's why we call her "Hot Shot."

In truth, it's encouragement from her coach, the other players and the other parents. She's riding a natural high. I'm not going to pretend that some day, she'll be the soccer version of Michael Phelps, but I have high hopes that, if she continues on her current path, she will get a soccer scholarship. In the words of Randy Jackson, that would be the "bomb."

As for the "Mommy Moment," my daughter's team elected her Captain for the day last Sunday. The team votes for their Captains based on MPV status from their point of view, not their coach's. To me, that moment was priceless. It tells me that she has learned to communicate with her team in her own way, through her athletic skills, even though she still has trouble communicating verbally.

As for me, I meant to write this post last Sunday night, but I was too exhausted from photographing the tournament. By the time I caught up on my sleep, my 6-year-old severely ADHD/asthmatic son had the croup again. So much for sleep.

On the bright side, he recovered quickly this time and we were able to visit the Georgia Aquarium today for a special tour. We saw them feed the whale sharks, got a glimpse of the elusive Nandi, the new manta ray, and took a very brief tour of the new Titanic exhibit. My son, who was dosed up on albuterol and steroids, had major issues with the dark tunnels in the exhibit so we had to breeze through, but I reminded my daughter that we can come back anytime for a more in-depth look. We saw the main exhibit two years ago when it was in Atlanta, but they have some new artifacts in this one.

That's all for now folks. Stay tuned for more exciting adventures.

Nianya

P.S. To my friends in NOLA and along the gulf coast, we're praying for y'all.

Pulling my Hair Out . . .

I have been so stressed out for the past few weeks, I'm surprised I'm not bald.

I spent the first 6 months of the year concentrating on my goal of getting in shape and collecting all the accessories I needed to photograph our Grand Canyon trip. Once the trip was over, I came back and my "normal" life resumed: my life as a mother of not one, but two special needs children.

For years, I have gone from one crisis to another without focusing on both my children's needs at the same time.

Last year, we narrowly avoid having to deal with two IEPs, by enrolling our son in his former Montessori School after his issues forced us to withdraw him from charter school Kindergarten after less than 3 days. He could not function in the charter school without modifications, we couldn't get the necessary modifications without going through the 3-month IEP process and we've been fighting to enforce our autistic daughter's IEP for three years now.

I was appalled that the school expected our son to be able to read at least 100 site words by the end of his first semester of Kindergarten. Supposedly, the 100-site-word rule is mandated. That's all well and good for most children, but completely out of the question for a severely ADHD, probably dyslexic child with autistic tendencies.

My 6-year-old can build anything from Lego's, he puts together model toys meant for kids twice his age, he loves art and he's very bright in math, but he can't read squat.

So this year, I'm not only paying private tuition to keep him in Montessori elementary school, but I have to hire a tutor to teach him how to read.

Major de ja vu.

We went through the same issues with our daughter 7 years ago. When she entered 4th grade she was reading on a pre-K level. We finally cried uncle that year, pulled her out of Montessori, got her a full IEP and put her in pubic school where we save thousands on resource services and private tutoring.

Now we're back between a rock and a hard place with her brother. We can't afford private tuition and tutoring, but we want to keep him in Montessori, where he can excel in other subjects, like math and science.

If we move him to public school, he will get the reading resources he needs for free, but he will be bored out of his skull with a regular first grade curriculum and, when he gets bored, he gets into trouble. He's a budding Malcolm in the Middle.

At the same time, we are once again going through the entire process of renewing our 12.5-year-old daughter's IEP. The school is fighting her autism diagnosis and would like to drop her speech therapy; we're fighting to get back the resource hours, which they cut in half last year, because we're concerned that she will not be able to mainstream when she enters high school in two years; and we're having to learn to live with the widening social gap, which she faces as she enters her teen years. Most of her peers don't understand her inability to socialize. She's like an 8-year-old in a 14-15-year-old's body.

As for me, I'm have to deal with both kids' issues, while working full time and suffering from very painful and persistent cysts. I'm going to need a wig soon.

Nianya

Tazmania: the Tooth Fairy vs. Poison Control. . .

Never a dull moment in our special needs house. Each little joy is always mixed with a healthy dose of reality.

My 6.5-year-old has been waiting not so patiently for his first tooth to fall out so he could leave it for the tooth fairy. This afternoon, he came screaming up the stairs proudly holding his bloody tooth. "I bit an apple and it yanked out my tooth."

I tried to convince Taz to give me the tooth for safe-keeping but he wouldn't part with it. I was sure he'd lose it before bedtime, but he kept that tooth in his little paw until he put in under his pillow after his bath.

An so, we began the great wait for the tooth fairy, which naturally was rudely interrupted by my discovery of two Sam's Club size bottles of gummy vites, which went from more than half full each to less than a quater full in the past 2-3 days i.e. somewhere between 75 and 100 missing vitamins.

I tried to tell his Dad a couple of nights ago that those bits of colored gooey things under the kitchen desk looked suspiciously like gummy vites, not some long lost fruit snack that Taz dug out of the pantry.

Tonight he finally agreed.

When I called poison control, they calculated the potential overdose and informed me that he could very well have consumed a toxic amount of vitamin A.

Luckily for Taz, the vitamins don't contain iron, he has no classic symptoms of vitamin A poisoning and, he consumed the vitamins over a few days. So he's probably okay. They recommended no more vitamins for at least a month. More like a year, if you ask me.

Dad, was relieved to hear that we avoided another trip to the ER, then asked why those darn bottles don't have child proof caps. I calmly reminded him that Taz was the only child in pre-K, who could open all six of the supposedly child proof caps during a in-class poison control demonstration.

He also knows how to open all of our locked cabinets, even though half of them have combination locks. He watched his Dad open them once and memorized the combinations. I tried changing them. It didn't help.

And so we are back to the tooth fairy, which, as always, Taz is determined to do to the extreme. He went to bed and promptly yanked out another tooth so that he could have a two-fer tonight.

Nothing is ever simple in our house.

Nianya

The "Eyes" have it. . .

Or in our case, the 1-eyed Ugly doll.

My 6-year-old Tasmanian devil came home today from three weeks of respite care with our in-laws. I've really been enjoying the peace and quiet in the house, since we got back from the Grand Canyon. Not to mention the fact that I didn't have to clean up the entire house each night before going to bed.

I really started to miss him though, when my SIL told me a week ago that Taz learned to swim and ride a bike, got his first loose tooth and night-trained himself (at 6.5 years) while he was gone. I guess we all needed a respite to get our Karma back in order.

The good news is he hasn't lost the tooth yet, so we still get the joy of playing tooth fairy for the first time.

He really did mature alot while gone, however. MIL told me that they took Taz and his 5-year-old cousin to a fair and they would not let him on one of the rides, because he was too short. Cousin, who is now taller than Taz, got to ride. Surprisingly Grandma said Taz was really good about it. He sniffed a bit and told the ride attendant "It's not my fault. My medicine makes me short."

If that's not out of the mouths of special needs babes, I don't know what is.

He's been on and off steroids since birth and on ADHD meds. since age 4. The kid can't catch a break, but I'd rather have him stay small, safe and healthy.

As for the Ugly doll, Taz was spinning in circles (as usual) at bedtime, when he noticed the 1-eyed "Wedgehead" from FAO Schwarz in Vegas tucked between the pillows on his bed.

"Mommy, you bought me a MONSTER DOLL!"

Thirty minutes later, after his nighttime dose of melatonin kicked in, he was sound asleep hugging his new monster.

Better a monster in the bed, then under it.

Nianya

$4 Gasoline, Rising Interest Rates & A Tanking Economy

I'm back with a vengeance my friends.

I had my wonderful sojourn in the Grand Canyon and learned a great deal about nature and my autistic 12-year-old.

Upon my return, I was hit with a massive dose of reality. Our refinance still wasn't approved after more than 30 days, despite excellent credit and a great deal of equity, the stock market was tanking and my self-employed husband had less work than ever.

I don't know how normal people survive these days, so you can imagine how much hair I've pulled out trying to crunch the special needs numbers for the coming months:

• $300 per month for medications
• $525 per 12-week social skills training session
• $6,000 per year for private Montessori school (my son could not function in public school)

The list goes on and on and doesn't include any of the normal family items, such as food, utilities, mortgages, insurance, soccer fees and school field trips.

In short, we have less money coming in, despite my annual raises, more and more money going out for rising costs and no end in site.

I don't know about the rest of you, but this is the first time in my life that I have taken a very serious look at an upcoming presidential election. I haven't decided how I'm going to vote, but I have no choice, but to vote against higher taxes and simplified filing for the middle class.

I'm not taking about taxes on short-term investors, who flip stocks and real estate for a quick profit. I'm talking about long-term capitals gains from wise investments that middle class Americans, like us, have established to care for our special needs children and provide for our retirements.

HELLO CANDIDATES: The bulk of my investments are not in 401K or other tax exempt retirement plans. There in solid stocks, bonds and CDs that are accessible in case of emergencies, are not subject to huge fees from fund managers and are properly diversified so that I won't lose my shirt, if the matching company's stock suddenly becomes worthless.

I/we should not be punished for selling a long-term stock at a significant gain or earning a hefty dividend on a wise long-term investment.

And don't even get me started on the domino effect to the already tanking economy and real estate market, if the government raises investment taxes or cuts itemized deductions for insurance, medical expenses and small businesses. I need those deductions to pay my bills.

If you agree with me, vote yes on my current poll.

If you don't agree, don't worry, I'm getting off my political soap box. I really haven't got time for it and it only causes more frustration in my life as the parent of two special needs children.

Until next time,

Nianya

Grand Classroom - Day 5 (Vegas)

Hurry up and pack, gobble your breakfast, jump on the bus and wait for 3.5 hours.

It's a long ride from Flagstaff to the Strip. Thank heavens for Wal-Mart, who has stores everywhere and stocks all the classics. It doesn't get any better than Raiders of the Lost Ark.

Note for next year, bring cool flicks to avoid having to chose between watching Napoleon Dynamite (Grand Classroom bus special feature) or paying a ridiculous price for a great video in the middle of the desert.

Of course the smile on everyone's face was worth any cost and we were still only half way to Vegas.

We had to say goodby to the Mighty Colorado River in Laughlin, NV but I got some great shots of all the casinos along the river canal where you can get a full spa treatment and hair make-over for only $20.

As we approached Vegas, our fearless Grand Classroom leader, Rita, led us in a round of "Who wants to be a Candyaire." Like it's namesake, the chosen students had to answer trivia questions (about the Grand Canyon and other places we visited), they got three cheats (50/50, poll the bus & "phone" a chaperon/teacher) and they won prizes: CANDY. Our Brighten Team, represented by Miss Anna Scasny, won the day and got all the questions correct.

I can proudly say that most of the answers were already included in my blog.

Then we hit the strip -- Epcot on Steroids -- France, Rome, Switzerland, Egypt and every other country you can think of.

First Stop: Circus Circus, where they let us loose for two hours in the Adventure Dome. Since, I'm not one for amusement parks, I thought I'd be bored. Silly me. We had a blast.

Although I only rode one ride: The Sponge Bob 4D Action Adventure, I had a great time walking around in the air-conditioned dome watching the kids on all the crazy rides and checking out the fun exhibits.

Next Stop: Caesars Palace and the Forum Shops. We explored the fantastic FAO Schwarz store with a life size Wooden Trojan Horse, bought some Ugly Dolls (Wedgehead and Ice Bat), which doubled for pillows on the flight back, and got our picture made with Elvis. Yes that's right, Elvis lives in Vegas and he's got his own website.

We had dinner at Planet Hollywood and walked down to the Bellagio for the evening Dancing Water Fountain show, which was fantastic.

Finally, we boarded our bus, one last time, for the short ride to the airport and another long wait for our overnight flight.

Wow, what a trip.

I realize that I'm a day late and a dollar short in writing this blog, but I did take the red-eye.

Nianya

Credits: Special thanks go to my parents, who financed most of this trip, my husband, who stayed home and worked to pay for all of my new camera equipment, and my in-laws, who are pet-sitting my 6-year-old Tasmanian Devil a/k/a my son, so that my husband could work while I was gone.

Best Toy in Vegas: Squirmles

Grand Classroom - Day 4 (The Grand Canyon)

Totally Awesome!!!!!

We hiked a 3/4-mile trail down the South Rim of the canyon and I am now completely in awe of Mother Nature. The flora, the fauna and the solid rock cut by millions of years of erosion.

Of course the laws of nature (what goes up, must come down) are reversed in the Grand Canyon. Here, he, who goes down, must eventually hike back up. Good thing I spent the last 5 months weight training at the gym. I felt like I was on the world's biggest stair stepper on the return hike.

Now I can tell all my friends that: I SURVIVED THE GRAND CANYON! - with a 12 pound mega-tripod on my back. As they say: those panoramic shots are worth a 1000 words.

After our hike, we had lunch and some free time to explore the park's book store. I found some great CD recordings of the sounds of the Grand Canyon and kits to grow both the native Ponderosa Pine and the Colorado Aspen - which grow in clusters, but share one root system. I can't wait to cultivate them in Georgia where we are currently suffering from year 3 of a deep drought.

We continued our tour of the Grand canyon area with a visit to the Desert View - Lookout Tower - a 70-foot Watchtower built in 1932, with stone around a steel frame. In designing the tower, the architect, Mary Colter, incorporated elements from both prehistoric and modern tribes.

Then we were off again for a respite and some shopping at the Cameron Trading Post, which was founded in 1916. Today, it's like the Wal-Mart of Native American art, baskets, dolls, jewelry, pottery and everything else. They treat bus groups to coupons to get you to spend more money, which is a good thing because, there were way too many items to choose from.

On the way back to Flagstaff we stopped at an old Indian field near the Sunset Crater. I personally did not see any pottery or arrowhead remnants, but we did find a cool animal vertebra and a very live horny lizard.

We ended our day at Ni Marcos pizza in Flagstaff and a trip to the Vertical Relief Rock Climbing Center. The kids are still there having a ball. I opted for a taxi back to the hotel so I could chill, get packed for Vegas tomorrow and write this blog.

Tomorrow we hit The Strip.

Nianya

Grand Classroom - Day 3

Once again I am back at our hotel late at night and almost too tired to write. That's how exciting our day was.

We started at the Museum of Northern Arizona in Flagstaff, which features the anthropology, biology, geology, and fine arts of the Colorado Plateau region.

I got some good lessons in digital photography during our visit, because flash photography is prohibited. I actually got better photos with my Kodak easy-share camera than I did with my new Canon Rebel, plus expensive optional lenses. Sometimes less really is more.

The museum has some fantastic displays of local dinosaurs, including a life-size skeletal model of a Dilophosaurus-a carnivorous dinosaur found in northern Arizona and the famous Therizinosaur - a sickle-claw dinosaur.

Most memorably, we learned about poopologists-scientists who study the where-abouts of poop. I'm not making this up, I swear.

After the museum, we traveled to Jerome-"America's Most Vertical City" and the "Largest Ghost Town in America." We had lunch on the main lawn and free time to explore the old hotels, eclectic shops and infamous sliding jail. One shop in particular, Nellie Bly, had the coolest selection of kaleidoscopes that I have ever seen.

From Jerome, we backtracked through Sedona to Slide Rock State Park-a 43-acre historical apple farm located in Oak Creek Canyon. We had a blast sliding down the slick rocks and playing in the "gently" sloping creek.

We ended our day in Sedona for dinner at the Open Range Grille & Tavern, with panoramic views of the surrounding mountains, and a bit of shopping at the Joe Wilcox Trading Post where we stocked up on Original Red Dirt Shirts.

Each day just keeps getting better and we haven't even been to the Grand canyon yet. That's tomorrow.

And on that note, I have to sign off and start drinking my water for the Big Canyon Hike.

Nianya

Grand Classroom - Day 2

Wow what a day! Kudos to the Grand Classroom. I haven't had this much fun in years and I'm really enjoying the scientific aspect of the trip. That says a lot for an attorney/writer/editor, who spends most of her time in cyberspace.

We started our day at Sunset Volcanic Crater and the Wupataki National Monument. Sunset Crater is part of a group of 600 volcanoes called the San Francisco Craters, which were named after St. Francis long before their namesake city was established. Sunset Crater erupted in 1064 A.D. (two years before the Normans invaded England) and the formations created by the lava flows are fascinating.

We saw a number of interesting desert plants and flowers growing in the lava rocks, including a Sky Rocket: a red flower in the phlox family.

Wupatki National Monument hosts the famous Pueblo Indian ruins, which were built by groups of Pueblos known as the Sinagua, Cohonina and Kayenta, who lived in the area until the mid-1100's. The main structures include a 100-room pueblo with a tower, community room and ceremonial ball court.

After visiting the Wupatki Monument, we drove through the Navajo Reservation on the way to Glen Canyon. In additional to the morning matinee movie, we were treated to some really great scenery, including a cool looking Butte (french word meaning a small conical rock formation), several Hoguns (traditional octagonal living areas for the Navajo Indians) and triplet sand devils (small desert tornados). We also got a great view of Marble Canyon.

Finally, after a 2-hour ride, we arrived in Page, Arizona for the pièce de résistance : our river float trip. Totally awesome. We drove through a 2-mile tunnel cut into the solid rock on a Homeland Security Bus, arrived at the country's second largest dam and boarded our Colorado River Discovery tour boats.

We got an absolutely awesome view of the Glen Canyon dam, toured the "famous" waterfalls, braved the "mighty" white water mini-rapids and declared "war" on our other group boat.

Thanks to our ingenious captain, Makayla, we had a secret weapon, a mega water gun. The Glen Canyon Pirates (us) won the "water wars" hands down.

We stopped at a beach, swam in the mighty Colorado river, hiked up a trail to view some petroglyphs and got a close-up view of a pair of nesting Great Blue Herons and their two chicks.

What a day! I can't wait for tomorrow.

Nianya

Grand Classroom - Day 1

Wow, what a day!

I'm sorry I only have a few moments to write, but we traveled almost 24 hours straight, by plane and bus yesterday and the internet wasn't working very well at 2 a.m. eastern when I tried to upload photos last night.

We had good flights, the Vegas Airport is well Vegas. Slot machines, oxygen bars, and way to many posters. I will get some pictures when we're stuck there on Weds. night waiting for the red-eye.

Hoover Dam is absolutely amazing, We went down inside and underneath and learned how the massive turbines produce electricity for more than 1 million in the desert Southwest. It was blazing hot, nearly 110 degrees, but no humidity.

Last night after a 3.5 hour bus ride to Flagstaff and the Mandarin supper buffet, we visited the famous Lowell Observatory where Pluto (which will always be a planet in my mind) was discovered. Really fascinating and I hope to see it in the daytime at a later date, because the landscape surround the facility is amazing.

That's all for now folks. Have to meet the bus in 5 minutes for today's action packed adventures and I haven't even had breakfast yet.

Nianya

Your ear is blue and its blinking. . .

That's what someone told me last Saturday at my daughter's end of season soccer party. Then they scolded me for not leaving my Bluetooth at home.

"Hey, give me a break," I said. "I'm expecting an important call."

I'm always on-call. I'm a mother of two special needs children and, like most of my kind, I'm afraid to leave the house without my cell phone. I don't even sit in the backyard without it.

It's more than just a matter of convenience. In some cases, it's my children's lifeline. I can't begin to count the number of times I've received calls from one of their schools, Sunday school teachers, coaches or daycare providers.

I'm more relaxed about the kids' issues than I used to be, but I still panic when they're out and about and an unknown number shows up on my caller ID. Like today, when I missed a call, because I forgot to turn on my Bluetooth after dropping my son off for his first day at Vacation Bible School. I held my breath and prepared for the worst when I called the number back.

Turns out it was just the dentist's office calling to remind my husband about his appointment. Darn those backline numbers. They never show up on my caller ID.

I realize that I'm obsessive, but I have to be. If I let down my guard, I'll get hit in the head with a big fat asthma attack, or, in my daughter's case, an autistic-style nuclear meltdown.

I'm currently expecting the former and experiencing the latter.

My 6-year-old tazmanian devil came home from VBS with a headache and spent the next 3 hours lying down on the couch. That's a bad sign for a kid, who's usually spinning his wheels in 50 different directions. It means he's getting sick and, when he gets sick, his asthma flares. It's bound to happen this week anyway, since he's going to stay with relatives for three weeks starting this Friday.

Never forget Nianya's Law: If anything can go wrong, it will, at the worst possible moment!

As for the nuclear melt-down. What kind of orthodontist makes an autistic 12-year-old wear so many rubber bands in her mouth that she can barely talk and has to eat through a straw? My daughter has spent most of her life in speech therapy learning how to talk and her ortho practically wired her mouth shut today, less than a week before her big trip to the Grand Canyon.

Which brings me back to my main point. I'm going to have to chill out next week and let others take control for a change, at least as far as my son is concerned. My son will be in another state with his grandmother and aunt, my husband will be home alone and I will be across the country with limited cell phone service.

Say a prayer for me friends, I'm going to need it.

Nianya

P.S. Does anyone have a remedy for Bluetooth withdrawal?

Life's little joys. . .

As a special needs parent, I learned long ago to appreciate the small stuff. Those precious moments that come so few and far between.

Lately, my stress level has been at an all-time high due to rising costs, shrinking funds, the drought and the nasty heatwave, in addition to all the special needs parenting issues I face on any given day.

Today, after spending half my time going back and forth between the dentist and the orthodontist, I was in desperate need of one of those elusive moments. Miraculously, I got several.

I came home from all the doctor appointments to find my new iPod nano waiting for me, thanks to Amazon and UPS. Then, much to my surprise, I was able to transfer all of my digital music to my new toy in minutes with practically no effort. Gotta love those plug-n-play toys.

Next, my extremely ADHD son, who got kicked out of beach camp two summers ago after less than 2 days, and, who lasted less than 3 days in his regular kindergarten class last fall, came home from his second full day of Zoo camp and proudly gave me one of the greatest art works I have ever had the pleasure of owning.

Finally, my autistic daughter finally expressed a very strong opinion about a subject that has been quite stressful for all of us for the past few weeks. It doesn't really matter what the subject is. What matters is the fact that she expressed her opinion immediately and confidently and we are happy with her decision.

And I am still enjoying the evening listening to all of my favorite music while I write this blog. Of course I had to fight my husband to get my iPod back after he found out I put all of his music on it as well. He promptly forgot our earlier argument about the unnecessary expense and ran off with it.

Nianya

Life in the fringes. . .

is really much simpler for parents of special needs children. That's why I choose to stay there.

Unfortunately, I often drift into the mainstream, either intentionally or by necessity. Whenever that happens my stress level triples. Eventually I get to the point, like today, where I run for cover.

After a very stressful couple of weeks, including a soccer tournament, IEP issues and this year's round of soccer try-outs for next year's team, I am completely drained.

Tempers are flaring all over town, so I have retreated to the fringes for the next two weeks to prepare for our BIG TRIP to the Grand Canyon. In other words, I'm holing up in my air-conditioned sanctuary, i.e., my master suite and home office, and only coming out for meals and trips to the pool.

Like any special needs mother, who's worth her salt, I'm going to let my husband make all of the rounds to the soccer fields, zoo camp, Vacation Bible School and the grocery store.

Nianya

Left of Center. . .

As the song goes, my 12-year-old daughter and I live our lives "left of center, in the outskirts and in the fringes, in the corner, out of the grip."

The only difference is that I choose to live there and she does not.

Because my daughter is autistic, she doesn't know how to approach people, ask them questions or join their group. In short, she lacks the ability to socialize.

When she sees her few close friends in a group setting, she will instinctively remain separate, always on the outside looking in.

A few of her friends have learned that they can coax her into joining their groups by taking her by the hand and leading her there. Even then she keeps her distance.

Last night, as I was photographing my daughter's soccer assessments, I very proudly noted that she was laughing and joining the girls, while they kicked their balls around during a break. Still, when their new coach had them sit in a circle to talk strategy, my daughter sat on her ball to the left. Once again "in the fringes."

Looking back on my life, I note that I always spent my time in the fringes as well. I'm not sure when I decided that I prefer life there, but I think that decision evolved in college where I met others like me. It probably had more to do with the fact that my friends and I were all outsiders at our very Midwestern university, so we rebelled. You can get away with that at a school with 30K students.

Still, I went through my stages of trying to fit in: Pappagallo, Laura Ashley, Doonie & Bourke and the Southern Belle Primer.

On the outside, I was one of the hip crowd, on the inside, I felt like an outsider. Somehow, I learned not to let that show. Those were my quiet years, when I kept my opinions to myself, showed only my poker face and focused on my career. I married, built my dream home, wore designer clothing and spent my vacations in fashionable Charleston. As my husband always said, "I walked the walk and talked the talk."

My quiet years ended when I found myself raising two special needs children. I just didn't have the energy or money to keep up with the Joneses anymore. Over the past 12 years, I have slowly evolved into a person, who doesn't worry about what other people think. My favorite sayings are "So what" and "Whatever."

I keep to myself, unless I want company, and only buy designer clothes, if they are made of cotton, black and grey, and sold at Sam's Club, Costco or BJ's.

Unfortunately, the same principles don't apply to my daughter. She is finally getting to an age where she realizes that she's different. I remember those years. Being an emotional pre-teen is bad enough. Living on the outside, looking in can be devastating.

I don't know how to explain this to my daughter. I'm still trying to figure out how I developed such a bone-dry wit. I'm a lot like the mother in Erma Bombeck's poem "The Special Mother," since I have to learn how to teach my children to live in a world full of ignorance, cruelty and prejudice toward anyone, who is different.

For now, I take my children's issues one at a time, I wake each day wondering what new crisis I will face and I live for those special moments, like today, when my asthmatic/SID/ADHD son finally put his head in the water after two years of swimming lessons.

I suppose that kind of moment is special to all parents, but it's priceless to me.

Nianya

Links: Free Web Browser for Autistic Children

The camera doesn't lie. . .

I have been an wannabe photographer, since I got my first Brownie camera when I was only eight years old. Okay, I'm not that old, but I got my first B/W camera back when printed photographs were square with white around all four edges.

In high school I used my grandfather's old SLR and took pictures for the school newspaper. We had our own developing lab and everything.

Finally, when I started college, my father bought me my own Canon SLR. I must have taken 30 rolls of film on my summer trip to France between my freshman and sophomore years. It cost more than $200 to get them all developed when I returned and they all ended up in a file cabinet somewhere.

I used that camera for years, traveled back and forth to Europe with it two more times and still had it when I moved into my current home 10 years ago. Of course, I was using a much smaller and lighter Pentax by then. So the camera ended up in the basement until I sold it in a yard sale to an old camera buff last fall for $10. It didn't work by then.

Over the past five years or so, I have been working with digital cameras, upgrading every year or so from my original 1.7 MP Kodak to my most recent acquisition, my hefty 10.2 MP Canon Rebel XTi. Since I finally convinced my husband to let me invest in the Digital SLR (18 months, no interest), I have spent an additional $300 - $400 on lenses, filters, a mega-tripod, camera backpack and miscellaneous accessories. Thankfully my husband hasn't grumbled too much over the additional expense.

I've been wanting the SLR for two years now and I finally had a good excuse, in addition to my 15th Anniversary. In just three weeks, I am taking my 12-year-old autistic daughter to the Grand Canyon on a school sponsored tour through the Grand Classroom program. I intend to photograph the trip and create a videography for her science teacher and our family.

In preparation for that trip, I have been learning how to use several new photo and video editing programs, including Ulead Video Studio 11 plus, Photo Elf, Picasa and Adobe Photoshop.

I've been taking pictures of my daughter's soccer team, since April when I purchased the camera, and I created a DVD for her team, which included some 350 action shots taken during two tournaments and a couple of regular season games.

When I viewed the finished DVD, I was absolutely astonished by what I saw. My daughter is a completely different person on the soccer field. She is confident, aggressive, agile and simply larger than life.

The same girl, who constantly struggles with her social skills and speech in unfamiliar surroundings, even when her friends are there with her, is now socializing with her team, attacking the ball with a vengeance and high-fiving her teammates whenever they get a great shot or great save. This is a major step forward in a lifetime full of two baby steps forward and three big steps back.

As they say, the camera doesn't lie and I am now the one, who is speechless.

See ya soon at the Grand Canyon. I will be posting pictures and trip notes on a daily basis.
Nianya

One picture is worth a 1,000 words. . .

Over the past three years, since our daughter (left) was diagnosed with high-functioning autism, we have struggled to come to terms with the lifelong limitations that she will face growing up and living in a society, that, until recently, thought autistic children merely sat in corners and banged their heads on the wall.

In truth, I'm usually the one banging my head on the wall out of frustration with teachers, other parents, coaches and peers, who lack even a basic understanding of what my child goes through on a day-to-day basis.

When our daughter was only two years old, we enrolled her in gymnastics to help with her coordination and when she was five she started playing soccer. I have to admit that we knew very little about autism back then and we had no idea that our child was on the spectrum. We only knew, from experience, that she had serious speech problems, poor coordination and thrived on routines.

Gymnastics and later soccer became part of her weekly routine. Three years later, one of the local coaches called and asked us to bring her to tryouts for the Academy team. At only eight years old, we thought she was a little young to be involved in a team that traveled around the metro area and played in tournaments, but we gave it a try.

Over the past four years, our daughter has stayed on the Academy team through a succession of coaches and changing teammates, which caused a great deal of confusion and a definite lack of stability.

The result, our daughter's performance in any given practice or game depended entirely on her mood that day. If she had a good day, she had a good game. She was ON. If she had a bad day, she could barely focus.

And the worst thing for us was her lack of camaraderie with her teammates. I have lots of team pictures where the entire team was gathered around one side of the bench and our daughter was sitting alone on the other end.

We used to think that our daughter was painfully shy. Now we know that she lacks the ability to socialize on her own and we try very hard to help her ease into social situations.

Our daughter's close friends know that they have to drag her into the group, but getting her to actually participate in their conversations can be tough. That's why we have invested big bucks and time in therapy and social skills training to help her recognize facial expressions, understand when someone is joking with her and learn to joke back.

This weekend it all payed off in spades. As they say, a picture is worth a thousand words and seeing our daughter joking, laughing and horsing around with her teammates between games at our weekend tournament was priceless.

Over the past few weeks, our daughter and her team have banded together during some really tough games and we have seen a marked improvement in her performance. She's been giving 100 percent lately, due to encouragement from her teammates and many of their parents.

They been asking what we feed her and we reply that she has jalapenos for breakfast and hot sauce for lunch and she just grins from ear-to-ear. That's really something for a child, who rarely smiled, even before she got her braces.

Still, all of this doesn't explain the jump she made to light speed this weekend and I can only chalk it up to one difference: our "new" coach.

One of our parents graciously volunteered to coach our girls during practice for the past two weeks after our regular season ended and this weekend during a holiday tournament that was not originally on our team plan.

With his encouragement and inspiration, the whole team gave 150 percent and our daughter gave her all. They lost their final game, but they never gave up, and they kept fighting to the very end. It was an absolute privilege to see the girls in such fine spirits and know in my heart that they are truly a great team.

Thanks so much Coach "Mike" for putting a smile on my daughter's face that is still there hours after her last game.

Of course she is now happily ensconced in the Wii room playing My new Wii Fit, but she's still wearing her uniform.

Nianya

What's this world coming to. . .

I really have to wonder when a 30-something stay-at-home Mom of one (very beautiful) child makes 40K a month on advertising just for dissing parenthood.

She has a book deal, she's on the Today Show and she's going on Nightline. What the heck????

Obviously, we live in an upside-down world where trash talks. Unfortunately for special needs parents, trash talk doesn't pay our bills.

My blogs about various SNK Parenting moments are chock full of dry humour, very cynical and often whinny, but don't think for a moment that I don't thank God each and every day for the children I worked so hard to have. They're not perfect, but what kid is.

I could talk all about the 2 years it took us to potty train each child, but who cares, when my oldest is Autistic and my youngest used to be lucky if he went 4 weeks without a bad Asthma attack. And by bad, I mean, waking up in the middle of the night unable to breathe.

As for post-partum depression, BTDT, didn't have time for it.

My premature son was in the NICU and, when he came home, we had to feed him $25/can hypo-allergenic formula, because he couldn't tolerate milk formula, soy formula or B-milk (can't mention that word on my blog without becoming the pot calling the kettle black).

Apparently Walmart and Hewlett-Packard care, because they supposedly support trash talk by advertising on www.dooce.com.

That really bites, since I regularly shop at Sam's Club and I'm sitting here writing this blog on an HP Pavilion laptop.

I do have dedicated readers and I'm thankful for every one of you, but here's my challenge. Forward this blog to everyone you know and ask them to do the same. Once the word gets out, maybe this blog will attract advertisers that care more about the content than the number of trash-talk based hits.

As for other big-name companies, such as Fox, CBS, Microsoft, Amazon.com, Costco, BJ's Wholesale Club and Target, I challenge you to place ads on this site.

All of the revenue from my blog goes to Liveover Ministries, a non-profit organization, which helps parents of special needs and underprivileged children pay for necessary medical care, home and car repairs and recreational sports activities.

Let's put an end to sponsoring trash talk.

Nianya

Mother's Day for the Special Needs Mom. . .

Wikipedia defines mother's day as a "day honoring mothers, celebrated on various days in many places around the world" and today was supposedly the 100 Anniversary of the Mother's Day Celebration.

I wonder how many decades it will take for the world to start celebrating a Special Needs Mother's Day. I could certainly use one and I'll bet that, if your day was anything like mine, you agree.

Yesterday, I spent the day chasing back and forth between my kids' soccer games, Michaels (to bribe my special needs son for behaving during his sister's games) and Sam's club to pick up pizza dinner and pictures for my son's soccer team. Okay, that sounds pretty normal for a soccer mom, but our family is anything but normal and taking the kids anywhere is a trial.

I spent the night hopping in and out of bed due to multiple tornado warnings, got maybe 3 hours of sleep and got dragged out of bed just in time to take my overstimulated/unmedicated Autistic daughter and severely ADHD son to the late church service.

No one brought me breakfast in bed, no one said Happy Mother's Day and my husband had the nerve to tell me off for trying to get my son to swallow one of his quick acting ADHD meds. to calm him down enough to get through Sunday School.

After getting stared at by the traditional Mother's day church crowd for not dressing up enough, we stupidly got in the car and headed for Cracker Barrel. We usually go there on Sundays after early church. We got there at 12:30 pm (bad idea on any Sunday) and I conceded very quickly that waiting over an hour for a table with our over-stimulated children was not a good idea, especially since my son, who is allergic to milk and wheat, can't eat there.

We tried Folks next and I walked right back out the door, when I saw that the waiting crowd was packed in tighter than a sardine can. So we went across the street to the Atlanta Bread Company, because it was amazingly sunny today, given last night's storms, and I wanted to sit outside on the patio. Naturally, my SID son refused to sit outside, because it was too windy. So I stayed outside with my daughter, while my husband and son ate inside. So much for mother's day brunch.

Next we went to Lowes, because we traditionally plant flowers in the yard on mother's day. My husband was annoyed, because he wanted to get back to the house and take a nap before he had to clean up the yard from last night's storms.

So I pick out some lovely budding lilies and hydrangeas and we head home. My husband leaves the plants in the back of the car and heads straight up to bed. Three hours later he gets up and starts the clean-up process.

And, to make a long story short, here I am writing my blog at 10:15 pm and half of my new flowering plants are still sitting in the garage in pots. My husband is enjoying the jacuzzi bath that I poured for myself after vacumming the house, doing the dishes, cooking supper and cleaning up the mess the kids made between 7 and 9:30 am (they slept through the storms). My husband's only comment when he saw me in the bath, was "Are you done yet, I need the hot water."

ARGHHHHH!!!!

Honestly, I can't blame him. We can barely handle our kids' issues and, when you factor in a storm and an otherwise too busy weekend, we we're sunk, no matter what we tried. I'm not really mad at him or the kids, I've just got the WHY ME syndrome.

It didn't help that my own mother called last night to ask, if I was going to pack my car with all of our special needs gear and medications and drive all the way to Timbuktu for my aunt's Memorial Day Race party. Let's just say it's a 10-hour drive, we would have to pay for a hotel, my husband can't afford to take time off from work and gas is almost $4 per gallon.

I can't afford to drive around town, much less all the way to Timbuktu.

Of course she didn't care about any of that or the fact that our daughter is in a soccer tournament that weekend and we couldn't go, even if we wanted to and could afford it.

And to top it all off, no one called or e-mailed to say Happy Mother's Day or to check to see if we were still alive from the tornadoes. To be fair, I must admit that my SIL sent me a text message, but I would have appreciated a quick hullo.

I did get a call this afternoon from a special needs parenting friend. She was concerned about how we fared last night and she keeps in touch with me about the kids. THANKS SO MUCH, YOU MADE MY DAY!

As I always say, "It takes one to know one."

So, back to today's theme. I have no intention of waiting for the rest of the world to realize that special needs parents need a break. I'm taking a day for myself.

This Thursday, I'm playing hookie (personal day), spending the day at the spa and making myself feel great so that I'll be totally relaxed when my husband takes me to dinner at my favorite restaurant. Okay, so it's my 15th anniversary or I wouldn't have a sitter, but as far as I'm concerned it's Special Needs Mother's Day and here's my wish list.

Nianya

One Tree at a Time. . .

As a writer and editor I am constantly reminded to look at the forest, not the trees. Focus on the whole, not the separate parts.

As an SNK parent, the forest overwhelms me. The challenges that I face with two special needs children make my life a never-ending marathon, taking two steps forward and three steps back.

Like most parents, I have a full-time job, I play soccer mom in the evenings and on weekends and I have a house to manage. Unfortunately, I also face the day-to-day obstacles of dealing with my children's special needs. If I let myself think about all of their needs (the forest) at once, I'm so overwhelmed that I can't deal with any of them. I have learned the hard way that I can only take on one crisis (one tree) at a time.

. . .

Naturally, as I was writing this blog last night, a great big tree fell right on top of me, or to be more specific, my son.

If you have a child, who is severely ADHD, you know what they're like when they don't take their medicine or when it wears off, particularly at bedtime.

Our son is so wired up at bedtime, he's like a Tasmanian Devil in a cage. He jumps, he bounces, he spins around, he flies through the air and eventually, he passes out for 10 to 12 hours and sleeps like an angel.

I can't count the number of times he's avoided major injury. This time we weren't so lucky--four hours in the ER and about 20 stitches in his forehead and ironically, all he did this time was jump off his bed and hit the closet door. Of course the door-hinge got in the way.

At times like these people always say "Boys will be Boys" and yes, my son is All BOY. However, most 6-year-old boys have some degree of control. Not our son. Not when he's off his meds.

I like to tell people: "This is my life on the patch" and "This is my life off the patch." That pretty much says it all.

Unfortunately, you can't medicate a child 24/7 and I wouldn't want to. So, I have to constantly remind myself that he can't control his impulsivity when he's off his medication. We have to be more vigilant, keep his room, our house and our yard as safe as possible, pray alot and thank God for keeping him safe each time he does something really dangerous.

On the bright side, the sun always rises and a new day begins. I went to bed at 3 am and had to get up just a few hours later for work, but my son, who stayed home from school today, is happily watching his favorite TV show and he's as docile and sweet as a lamb.

"This is my life on the patch."

One day/one tree at a time!

Nianya

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

Burning the candle at both ends and straight down the middle. . .

As a full-time working mother of two special needs children, I'm constantly in the middle of an SNK tug-o-war. If I advocate one child's needs, the other one suffers. I can multi-task with the best of them, but we all have our limits and I often reach mine.

Yesterday, I tried to write two checks at once, while talking to our daughter's therapist. I wrote the first check to the IRS for $20. Now that's wishful thinking. Good thing I caught myself before I wrote the therapist a check for $$$$$. She would have been thrilled, but the IRS would not.

Probably not a good idea to tick off the tax man when one is filling an extension, due to LACK OF TIME.

Today, instead of basking in the small joy of having the money to pay my taxes, I spent 4 hours home-schooling my child.

Okay so that's a slight exaggeration, since technically we were doing homework. However, my daughter is in a state-funded charter school and no one told me I would have to spend half of my free-time finding and printing out Internet research about the subjects she is studying and my remaining free time explaining the subjects to her.

Don't get me wrong, my daughter and I had a great time this week creating trading cards for her science project on the solar system. But I can't do everything.

So now it's late and instead of relaxing in my jetted tub, I'm venting.

I can't win for losing. I spent all of last week concentrating on my special needs son to the detriment of my special needs daughter. Tonight, I told my son he would have to wait for dinner, because I was in the middle of printing up his sister's Internet research.

I'm the only one in the house that can cook his eggsies, which is one of only two protein-based foods my son can and will eat. Food allergies + sensory issues = a veerrrryy limited diet!

It would be so easy to just throw in the towel and crawl under a rock and sometimes I do just that. Luckily tonight, I persevered. The homework got done, the project is finished and my son got his eggsies.

So tonight I will sleep soundly and wait until tomorrow to worry about how I'm going to get my work done, chaperon my son's lunch-time field trip, spend 4 more hours on my daughter's homework and get her to the soccer field for practice on time.

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

Marriage and the Special Needs Child. . .

I applaud all parents, married, partnered or single, who struggle with raising their special needs children, but I feel that it is important to note how difficult it can be to maintain a marriage while doing so.

In a country where the divorce rate has reportedly risen as high as 50 percent for first time marriages, the rate is reported to be considerably higher (as high as 80 percent) for marriages involving special needs children.

I personally know or know of quite a few couples, whose marriages failed to survive the stress of raising their special needs children. I often wonder how my husband and I do it. Over the years we have come to realize that our children inherited their special needs (ASD, SID, ADHD, Asthma etc...) through our combined family histories, not due to fertility treatments (our son was in vitro), childhood vaccines or environmental exposure, we also know that we have many of the same issues and we try to laugh when things get so bad that most people would cry.

Still, that doesn't explain why we remain so committed to our marriage when others could not. My only conclusion: our faith binds us in ways that we may never understand, but have learned not to question. I am constantly reminded of the poem Footprints in the Sand, whenever I feel like I can't go on. We always make it through each crises, because our faith carries us when our physical strength and willpower fails.

Today I read a bittersweet update about Baby Noor, a child who is very near and dear to my heart and the heart of my good friend Debbie Stone, who illustrates my children's books. Debbie spearheaded the initial campaign to bring Noor to the United States for life saving surgery and I had a once in a life time chance to meet and hold this precious child before she returned home.

The update, which included pictures of Noor, now a beautiful 2.5-year-old, mentioned that her parents are now divorced and her father is remarried. Sadly, I was not surprised.

In some cases, divorce or separation is unquestionably in the best interest of the children involved. In most cases, however, the children are simply caught in the middle and this often continues after their parents separate and/or divorce. Many divorced parents disagree about the need for and/or cost of special services for their children.

In the worst case scenarios the children fail to receive adequate/necessary care from both parents. Many of these children end up in foster care or child protective services.

For this reason, I believe that we must provide more support programs and networks for parents of special needs children. Whether single or married, parents of special needs children need support networks and access to affordable services for their children.

For the past several years, I have been working to develop a Christian-based ministry directed toward helping parents of special needs children get the services and support they need to keep their families together. My special needs children's ministry, including this blog and the SNK Parents google group, is partnered with Lifeover Ministries, which provides financial assistance to qualifying families with special needs children for out-of-pocket medical expenses, home and car repairs and children's recreational activities.

We are currently working on a detailed website, which will provide information for parents to apply for Lifeover grants. Please stayed tuned for future updates on our progress and feel free to contact us through this site, if you have any questions.

Nianya

Links:

Providing for Employees with Special Needs

The Autistic Family Life Cycle: Family Stress and Divorce

The Relationship Factor: When Special Needs Challenge a Household

Politics and Special Needs Children are like Oil and Water. . .

They don't mix!

Every election year, the candidates try to outdo each other by hitting all the keys words: universal health care, education and this year's flavor of the month, autism. All children should have access to health care and we need more funding for autism research. Can't argue with that!

And therein lies the problem, none of the candidates will address the more pressing issues that we as special needs parents face every day of our children's lives:

1. Co-Pays and Out-of-Pocket Expenses for medicine and therapies that even the best insurance does not pay for.


2. Private tutoring, classes, audiology services and speech therapy not provided for under IDEA or NCLB.
   
3. Respite care.

The list goes on and on.

As a newpaper Opinions Editor, I constantly get e-mails asking me to publish editorials and public service announcements from politicians, candidates and private activists promoting public causes.

Ironically, no one listens to my opinion, except my dedicated blog readers.

To prove this point, I recently e-mailed the three top presidential candidates asking them to express their views on specific funding and legislation for special needs children. Here's what I said:

As a parent of two special needs children, I have reviewed your plans for comprehensive medical care.

However, I do not see any provisions for providing for supplemental services such as occupational therapies for autistic children or coverage for out-of-pocket expenses for co-pays and medications for chronically ill children.

I have excellent health coverage, but still pay thousands in out-of-pocket costs each year for my special needs children.

What provisions do you intend to include to cover such out-of-pocket expenses?

I received almost instant responses from two of the candidates. Both candidates cordially informed me that they receive thousands of e-mails daily and cannot respond individually, but please see our website for detailed information on the issues.

Hello?

I read their opinions on their websites before I e-mailed them.

I'm still waiting for a response to the candidate I currently support. Rather than be insulted, I will assume that this particular candidate is taking the time to formulate an intelligent response.

Today, I received a government press release informing me that a bill is being introduced to extend Georgia's special needs scholarship to students, who attend failing schools. The press release starts out with : "Hold on children. Help is on the way!"

My response:

Why don’t you add a provision to the scholarship act allowing the parents to choose the school. The scholarship act is useless to parents of children, who qualify, when no local schools are registered with the state to accept the scholarship. My own daughter qualifies for an extensive scholarship, but no private schools in our county qualilfy.

We thought help was on the way last year. We're still waiting.

I've become an expert at the waiting game. I grumble, I grouse, I whine and I wait for someone to listen.

On that note, I would like to close, with a short success story.

A close friend or mine got tired of waiting for her son's doctors, her insurance and the school system to provide for her hearing-impaired son. She took the initiative, as we all do when are backs are to the wall, and researched available grants. I am happy to report that she and her son received a $2K grant for a hearing-aid device, which will help her son in school.

Nianya

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