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December 20, 2008

How the Grinch Stole Christmas. . .




Every year Grandma spends months collecting little stuff as she calls it. . .pads of paper, pens, key rings, cosmetic bags (the gift with purchase type) and other cool freebies from doctors, lawyers and insurance agents.

Each December, she lovingly boxes these items, wraps them up, packs them neatly in a box or two and ships them off to us for Christmas.

And each year, on Christmas, when we open our little stuff, our house is like a scene from "A Christmas Story."

This year, I am sad to say that the Grinch came to our house, on a weekday, in broad daylight, and stole our boxes of little stuff right after FedEx dropped them off at our door.

Unfortunately for us, my front door digi-cam caught only a streak of green sneaking back down our street. You're a mean one, Mr. Grinch, for stealing grandma's little stuff.

Unfortunately for the Grinch, one of those boxes contained something way better than Orphan Annie's secret decoder pin.

What, you ask, could possibly be better than Ralphie's long-awaited secret decoder pin?

How about the AFLAC Duck!!!

. . .who is no doubt Aflaacckking his way out of the grinch's sack as we speak.

Aflack, Afflaacckk. . .AAAFFFLLLAACCKK!!!!

Take that you mean and nasty grinch.

Happy Holidays,
Nianya

December 12, 2008

Prayers for Baby Noor. . .


As a special needs parent, I always have a lot on my plate during the holidays. I hold my breath and wonder when the next crisis will come.

This morning I woke up to a full blown crisis, which made my own issues pale in comparison.

I recently wrote an update about Baby Noor, a child who is very near and dear to my heart and the heart of my good friend Debbie Stone. Through Lifeover Ministries, 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.

Last March, our metro newspaper published an update of Noor, who was then a beautiful 2.5-year-old. This morning, I learned that Noor's primary caretaker passed away.

Please pray for Noor!!!

They say it takes a village to raise a child. In this case, it may take an entire world.

Nianya

November 17, 2008

What's Uno and how do you play it. . .


Or more importantly, how come my kids know the rules and I don't?

Lately I seem to be writing more and more about how much our lives have changed, since we became special needs parents. I vaguely remember playing Uno with my husband and friends during our "early years." Now I can't remember the last time I picked up a deck of cards, until last night.

Last night at church, we were challenge to learn how to be generous while playing a variety of simple games. Our table chose Uno before we realized than none of us could remember the rules. You'd think they would be printed on the back of the package, but apparently the rules are so simple they don't need to publish them.

Not so simple for a couple of lawyers (us), who spend all our free time dealing with our special needs children. Remind me to write the manufacturer and tell them to produce a set of cards for special needs parents.

Seriously, I have been watching my children play cards together for weeks now. It's great for us. It keeps them busy for a while and gives us a chance to read the paper, take a nap or blog.

So what's wrong with this picture?

We're not in it!

Our kids are sitting on the great room floor happily playing a game of cards and we're off doing something else.

If I think back far enough, I can remember playing games with my parents during family vacations, on the weekends and on holidays. Granted we had to coax them into it, because they were also busy professionals, but they joined us more times than not.

I also remember my autistic 12-year-old asking us recently to play cards with her and we told her to play with her brother instead, because we were too busy.

What!!!!

Too busy to play with a young girl, who is struggling very hard to reach out to people she knows and learn how to interact with them.

Shame on us!!!

And then again, maybe not. I can drop everything and deal with a special needs crisis at any time of the day or night, without blinking an eye.


  • I've been called out of my own physical therapy session to pick my son up at school and take him to the emergency room;

  • We've driven out of the garage at 1 a.m., with our son struggling to breathe, realized the tire on our Pilot was flat, remembered that we had no spare and changed cars without blinking an eye; and

  • I've driven all the way from downtown to meet my husband and daughter at the doctor's office, because of a severe allergic reaction, only to find out that the doctor was closed for lunch, so we went across the street to the local children's ER. Probably would have ended up there anyway.

It takes a great deal of energy, time and patience to parent special needs children and I can special needs parent with the best of them.

My goal this holiday is to learn how to be a "normal" parent.

I'm going to find all those fun card games that we used to play when I was a kid and, on Christmas day, I going to get down on the floor with my kids and learn how to play them. And next time one of them asks me to join in their game, I'm going to find the time to do so!

Nianya

P.S. I'm open to suggestions for fun card games. I can't remember the names of most of them.

November 8, 2008

Mom, where's the dining room. . .

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

  • I set some strict rules for both kids with regard to keeping their rooms, the great room and the kitchen in order.
It didn't take long for my daughter to get the hint that I meant business after I put a lock on the TV/Wii cabinet and started changing the combination every time she forgot the rules.

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

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

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

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

Nianya

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

November 5, 2008

It's a different world. . .

As parents of an autistic 12-year-old we go out of our way to make our world and our daughter's life as accommodating, predictable and secure as possible. We observe a strict schedule, give her plenty of notice of any impending changes and try to provide an autism safe-zone where she can relax. Usually that's our house, but it also includes her social skills classes, counselor's office and even the soccer field.

It has never been easy and it's getting harder, as she gets older and involved in more activities. With all the recent hullabaloo over the elections and the economy, our daughter started to panic that the sky is falling, we're going broke and we're going to lose our house. She sees everything in black and white and takes everything she hears literally.

For the last couple of years, we've been talking about finishing our basement so that our kids have a fun place to play and hang out. Recently we told our daughter that we can't afford the expense. It's not as if we need the extra space. Instead, we rearranged our main floor to make better use of the space we already have.

We also cut back on a number of unnecessary expenses, made the decision to put our son in public school, so that he can get the help he needs, without having to pay for private tutoring, had a big yard sale to raise the money to pay his private tuition for the remainder of this semester and told the kids that Christmas would be lean this year. We jokingly told our kids that Santa had to lay off half his elves due to the tough economy. Our daughter may be autistic, but she figured our the Santa thing a while ago.

We thought she understood why we were tightening our belts and battening down the hatches.

We we're wrong!

In our daughter's mind, not having the money to finish the basement meant not having any money. No money to pay our mortgage, no money for food and no money for soccer (which by the way is a major expense when you get into the teenage competition leagues).

Even worse, we completely missed the boat, when she kept saying "So we're going broke" and "kids at school are saying that the world will end, if so-and-so is elected." We brushed her off with the usual parental assumption that she's overreacting like all girls her age.

Needless to say, I felt terrible when her counselor had to point this issue out to us.

We should know better and we do, but in our defense, it's really hard to figure our what's in our daughter's head sometimes. We have to keep reminding ourselves that no matter how many times we explain something, she will keep asking the same questions.

In our daughter's world there is no such thing as a generic or all encompassing answer. She may understand our answer to one question, but she is often unable to apply that answer to a similar or even identical question in the future.

That means that we have to keep repeating ourselves and reassuring her every time she has a question or concern. We can't just say: "We talked about that, don't ask me again."

When our daughter stresses about something, she needs continual reassurance. She often repeats her questions several times: "Are you sure it's going to be all right?" and we have to keep telling her, yes, until she calms down or we can get her to refocus her thoughts.

Which brings me back to my main point. It's a different world out there from where our daughter comes from (i.e. our safe zone) and the older she gets, the harder it becomes for us to shield her from issues that she doesn't understand.

And, more importantly, we don't want to shield her too much. We're trying very hard to help her become more independent and mainstream with her peers.

It's easier to stay in our safe-zone. When our daughter is less stressed, so are we, but she has to learn to adapt to the world outside to the best of her abilities. We want her to function at her highest possible level and that means being more vigilant, more patient and more understanding.

And when our daughter says, "You're not listening to me," we have to go way beyond the count to 10 rule. We have stop what we're doing, help her explain what's wrong and help her find a way to resolve it, not matter how stressed we are at that particular moment.

Nianya

October 19, 2008

Soles4Souls. . .

What an awe inspiring weekend.

Our local church youth spent the weekend collecting, sorting and packing donated shoes as part of a Soles4Souls weekend lock-in. The kids also participated in a wonderful outreach project at our local shelter (scraping, priming and painting the wrap around porches) and they visited yard sales to ask for additional donations. Thank you Angela for helping me to photograph the kids this weekend.

After dinner, we were treated to a wonderful concert by Christian musician Jonny Diaz. The kids watched a inspirational movie and finally let their chaperons get some sleep around 3 am this morning.

Although I could not spend the entire weekend with the kids, I had an amazing experience going out shoe shopping, as my husband called it, yesterday afternoon. We made the rounds of several local thrift stores and one local flea market. The store employees had no individual authority to lower their prices for our cause, but I was able to get several pairs of gently used children's shoes for very little money and a promise that the cashiers would give our flyer and other information to their managers to see if they can donate more shoes next week.

At the flea market, I met the most amazing woman. I have to admit that I have a great deal of trouble approaching people that I don't know and asking for anything, so I was very sceptical that I would be able to convince anyone to donate or even discount their shoes.

I approached a couple of people, who had brand new athletic shoes for sale, and got nowhere. Then, just as I was about to give up, I saw some baby and toddler shoes on a table and asked the seller if she would be willing to donate or discount them for our cause. I handed her the flyer and waited anxiously while she carefully read it. Then I watched in amazement when she stood up and started piling up the children's shoes for me. She also said she would keep the flyer and contact the church if she has more to donate. An inspiration and a blessing.

I also have to share another amazing moment for the weekend. I bought all three of Jonny's CDs and asked one of the adults to get them autographed for me, since I couldn't stay for the whole concert. Naturally, when they said my daughter could get them autographed, I said, "My daughter's autistic, there's no way she's going up to someone she doesn't know!"

As a special needs mother, I should be ashamed of myself for automatically underestimating my daughter's abilities. I was tired, but that's not an excuse.

As I sat there waiting for the concert to start, I rethought my response and realized that I could ask one of my daughter's youth friends to help her, so I did.

This morning, I was floored, when our youth director told me in church that Morgan went up to Jonny after the concert and got him to autograph the CDs all by herself. And the kids were whispering "Morgan's going up there!"

Faith and Understanding: This weekend gave me an abundance of both.

Nianya

P.S.: As a side note, I discovered the magic that can be found at thrift stores. While I was shoe shopping, my 6.5-year-old son scampered off to the toy section to see what treasures he could find. When he showed me a battered 3D castle puzzle, I looked at it sceptically and wondered if it could possibly have all the pieces. Then I thought, what the heck, even if it doesn't, he'll have fun with it. Sure enough, while I was back at the church with my daughter and the youth, he proceeded to build Camelot in record time, then dismantled it and started building his own castles straight from his imagination. Wonderful therapy for an extremely ADHD/SID child, who can't yet read. Of course he had to take his castle gate house to church this morning to show everyone. Apparently the castle distracted his class.

Faith and Understand: That's what it's all about.

October 13, 2008

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
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September 28, 2008

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

September 21, 2008

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

September 9, 2008

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

September 4, 2008

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

August 30, 2008

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.

August 16, 2008

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

July 21, 2008

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

July 12, 2008

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

July 10, 2008

$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

June 26, 2008

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

June 25, 2008

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

June 24, 2008

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

June 23, 2008

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

June 22, 2008

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

June 16, 2008

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?

June 10, 2008

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

June 6, 2008

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

June 4, 2008

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

May 30, 2008

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

May 25, 2008

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

May 12, 2008

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

May 11, 2008

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

April 28, 2008

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