I can't win for losing. . .

Last year I forgot both kids' school valentine's parties, because they fell on Friday the 13th right between Taz's annual bout of pneumonia and his fifth surgery and because I had to attend a CLE seminar that day to finish my credits for the prior year before the $100-penalty deadline.

So this year, I planned ahead.

I have become a Google calendar fiend. I use it to track our vast number of special needs appointments, work and class schedules, soccer and gymnastics practice, bill payment deadlines. . . you name it.

If you can name it, I track it!

I remembered to buy both kids' party stuff, candy and cards at BigLots, Michaels, Sams Club and Krogers, while I had 20-50 percent-off coupons in hand and money in the bank. No mean feat in this economy when every penny counts.

I scheduled time on Wednesday night to organize, label and package each kid's party items at the kitchen table, while dinner was cooking in my crock-pot and dh and I were discussing this week's appointments.

I sent Jessie off to Omega Academy yesterday morning laden down with Valentine's candy, party decorations and a yummy cookie cake, which she personally picked out at the store, and I scheduled time to make Taz's GFCF brownie hearts last night, while cooking Chinese in my new Sams Club rice cooker/steamer.

Yes, that's right, you did not misread.

I have become SUPERMOM.

I can bring home the bacon, fry it up in a pan and clean up the dishes, all while maintaining my sanity as the best mother to two special needs children on the planet.

. . .

NOT!!!!!!!!

This is where Nianya's Law kicks in and my super mom story falls apart.

Nianya's Law for parenting special needs children states that "If anything can go wrong, it will, at the worst possible moment."

So what does that have to do with Valentine's Day this year? It's not like today is Friday the 13th again. . .

Yesterday, Taz had his first appointment at a new pediatric dentist, who specializes in working with special needs children. I scheduled Taz's appointment in the early afternoon, during his most medically cooperative time of day.

Unfortunately, that meant that we also had to check Jessie out of school 30 minutes early, because the dental office is located a good 40 minutes from our home and we would be gone for several hours.

When I consulted my calendar the night before, I briefly panicked at the thought of having to check Jessie out early on her Valentine's party day.

Then, I remembered that it was the last day of school before a week-long winter break and, since the kids have lunch at noon and get out at 1:30 each day, I figured that the party would start at lunch and be going on for a good 30 minutes before Jessie had to leave.

More than enough time for the Jessinator to eat her fill in candy, cookies and cake.

Again. . .

NOT!

Apparently Jessie's teachers are a lot smarter than I am, because the kids had an early lunch and went back to work before the party. We arrived at the very last minute to pick her up. . .

exactly 5 minutes before the party started!

As we bustled Jessie into the car with an already stimming Tazmanian Devil, one of the teachers thanked me for the cookies, candies and favors that we brought for the party and assured us that they would pack up Jessie's goodie bag and send it with a friend to soccer practice last night.

We were already on the road, before it dawned on me that, not only had Jessie missed her party, but we didn't even have a bag of goodies to munch on for the 40 minute drive.

So what about Taz you ask?

It's not as if his party is ruined, since his party is scheduled for today and I already have everything ready. I even remembered to tell his teacher yesterday, when we checked him out, that I would put all of Taz's goodies in his backpack, so he wouldn't forget them. . .

. . . and I was fully prepared to spend all last night cooking yummy GFCF brownie hearts, one mini-heart-shaped-pan at a time. . .I only have one pan, so I have to keep refilling it and putting it in back in the oven for 15 minutes at a time.

Nianya's Law. . .AGAIN!

Last night, as I was cleaning the kitchen and preparing to bake the brownies, I started noticing my Facebook friends' comments about grocery store panic and getting stuck in the house for yet another weekend.

I'm like, come on, this is HotLanta, not the Midwest, Northeast or Washington D.C.

It never snows here.

Um, well, except for that 5-day extra long weekend last month when we got 2 inches and could not get out of our driveway, much less up the steep hill of our street.

But, come on, people, it's the middle of February and General Beauregard Lee swore we'd have an early spring.

Again, NOT!

In a last minute ditch effort to save Valentines, I opted not to make the brownies last night.

Given Nianya's Law, I figured, if I made the brownies, they would close the schools and, if I didn't, they would not. Taz would have to party without his brownies, but at least he would get to party.

So dh and I watched the news and the web last night and waited and waited and waited some more, while the list of school closings grew county-by-county. After the 10 o'clock news, Dh happily declared that there would be school today.

Um, NOT!

Sure enough, at exactly 11:10 pm, while listening to Hope for Haiti Now on the iPod and snuggled in bed with hot tea and a good book, my Blackberry started the telltale text message buzz and tune. I didn't even have to pick it up to know that it was the school system notifying all of us super moms, who signed up for instant text alerts, that the schools were closed for Friday.

I think it's time I added a caveat to Nianya's Law: "There's not a damn thing you can do about it, so just suck it up and move on."

Nianya

P.S. I still claim title to the Greatest Special Needs Mom on the planet, since I'm up blogging before the crack of dawn, while facing another weekend stuck in the house with the 7yo #ASD/ADHD Tazmanian Devil and, while he may have a snow day, I DO NOT.

I telecommute, so I have to work come rain, snow, sleet or Biblical flood (which I might add that we suffered through last fall).

P.P.S. Not only did we get 4 inches of snow that day, which I might add was the Friday before another 5-day school holiday weekend, but when Taz finally went back to school the next Thursday I forgot to include his Valentines. I mean come on, who celebrates Valentines a whole week after the fact. Apparently the 2nd grade! UNCLE

Walking a very fine line. . .

Today's Autism Learning Felt Blog

I pulled a Nanny 911 on Taz today. He lost all of his toys, books and other stuff and went on super double secret groundation; if he wants any of this back he has to earn it.

Cheers,
Nianya

3-day Nanny 911 Update. So far Taz has only earned back one stuffed dog and his craft paper, pens, scissors and tape.

PBS Kids Dinosaur Train Preview Party

Another lazy summer Saturday. . .

NOT

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

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

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

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

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

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

HUH????

Well ummmm. . .

I'm a mom and I blog. . .

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

Apparently not, one of the beautiful people!

And little did they know, they were SOOOOO right.

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

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

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

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

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

Nianya

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

Serenbe, Georgia - Eclectic Country Living

This summer we're going back to our roots or rather back to the way our grandparents used to live before the jet-setting, overspending electronic age and the current great recession.

To make a long story short, we're playing Georgia traveler and spending our weekends discovering all the little gems, within driving distance of Atlanta. Last weekend we visited the Atlanta Botanical Gardens. Today, Serenbe, Georgia - a natural community based on traditional values and environmental sustainability.

We took the scenic route on our way to the Serenbe Saturday Farmer's Market and only got lost a couple of times, but at least we got a quick look at downtown Palmetto, Georgia on the way.

The farmer's market at Serenbe varies in size depending on the weekend. This weekend it was fairly small, but everyone was amazingly friendly.

As usual, I started out chasing 7-year-old autistic Taz from booth to booth telling him not to touch. Surprisingly, all of the vendors took him in stride. He's just a boy, he can't help it, they said.

True, but I'm used to getting stares or glares whenever we go out, because Taz is a very sensory boy. He has to touch everything and he's often like a bull in a china shop.

Not today though. Even the vendor with carved pens and kaleidoscopes kindly informed me that their goods are all child proof (4 grandchildren). They didn't even blink an eye when I said we call him the Tazmanian Devil.

So I relaxed and gave the kids free rein within sight distance of course.

We snagged some great fresh veggies, found a landscape designer, who makes container gardens out of eco-friendly shell-shaped cement and explored a few shops, including an activities and adventure shop called Getting Around.

Getting Around offers golf-cart and bikes rentals, tours and outdoor adventures, including a kayaking trip on the Chattahoochee river next month, which I hope to go back for.

We ended out tour with a late breakfast at the Blue Eyed Daisy Bakeshop, an eco-friendly eatery just up the road from the farmer's market.

And, now that we know the way there (we found a short-cut on the way home), we will definitely be back for future Saturdays.

Nianya

P.S. Taz has an unusual fear of dogs, but he had no problem with the adorable squealing pig (see Serenbe slideshow above) that sat at the table next to us during breakfast. Go figure.

Kudos for Vacation Bible School

We went out on a limb this week and registered 7 year old autistic Taz in Vacation Bible School at a new church, because he will be in Charleston during our regular church's VBS.

So far, I am totally impressed with First United Methodist and their VBS staff.

The church staff called me Saturday to confirm Taz's registration and make sure that they were clear on his allergies and medical issues. This morning, when I dropped Taz off, his group leader immediately asked if we had his snacks, since he is on the GFCF diet due to milk and wheat allergies. And, when I picked Taz up at lunch time, the group leader told me he did great.

Taz had a little trouble understanding that he had to wait until Friday to make his Turtle, but his group leader said he agreed to wait. Then she apologized that they did not have the materials for making the turtle yet. As a special needs mother, I'm usually the one apologizing or explaining Taz's sensory issues.

OMG what a change that is from the Sunday School teacher last year, who told Taz he couldn't bring his castle to class with him, because it was too disruptive.

I always hold my breath when picking Taz up from afterschool care, tutoring, Sunday School or day camp, because I never know what I'll hear about how he behaved while there. And, just yesterday, Taz had a major melt-down in Cracker Barrel over a decorated egg. You never know what will set him off.

What a difference a day makes, especially when we are blessed with teachers/group leaders, who take the time to listen and explain to Taz that it's okay to wait a day or two for that special craft.

And thanks for letting Taz take his workbook home. He specifically let me know that he had to promise to bring it back every day.

Let's hope mommy remembers it tomorrow morning.

Nianya

P.S. Forgot to say thank you for the Crocodile Dock CD. Taz was absolutely trilled to hear the music again on the way home today. That means so much to me as the mom of a child with sensory issues. Music definitely soothes the savage beast a/k/a the Tazmanian Devil.

P.P.S. The entire week was phenomenal. The group leaders were great and Taz was great. He learned all about the Bible and Jesus and most importantly, he proudly showed off his special turtle when I picked him up on the last day. He hasn't let it out of his sight since.

How I became a Special Needs Mother - Chapter Two

By the time Jesse was 3 we knew she had a speech problem, she communicated mostly by pointing and screaming, if we did not immediately understand what she wanted.

I looked into the possibility of speech therapy, but she was too old for our state's Early Intervention program (Birth - 3) and she was not yet in school. And, everyone kept telling us that she would talk when she was ready.

Speech of course was not her only issue, she was also very clumsy, not just the toddler/twaddler issues, but a total lack of balance and awareness of her surroundings. At age 2 we found a wonderful gymnastics program to enroll her in.

We had no idea at the time that gymnastics served as an alternative to autism intervention. Over the course of 6 years from age 2 to age 8, Jesse's gymnastics program helped her develop her fine and gross motor skills. It also gave her a sense of accomplishment. The beautiful smile on her little face when she raised her trophy each year with her classmates at their spring show was priceless.

Jesse had all the classic signs of autism and still we thought she was just a difficult toddler/pre-schooler, who needed a strict routine.

Part of that routine was Jesse's new Montessori school, which she started attending when she was 3.5 years old. We had interviewed that particular school before placing her in her first school at age 2. At the time, the new school was still housed in one building and the toddler room was very small.

When we went back to the new school for primary Montessori (age 3-6), we were amazed at the changes they had made, including expanding into another building. Jesse's new teacher was absolutely wonderful with her and the Montessori method was perfect for her then.

For the next two years, we settled into a predictable routine with Jesse. She screamed every morning when we dropped her off from school, she continued to have pottying accidents, even though we forced the issue of potty training during the summer of her third year, and her speech improved only marginally.

However, by that time, we had learned how to communicate with her. We had a good idea of what situations would set her off and we avoided the inevitable screaming fits from changes in routine, as often as possible. In other words, we stayed home, joined a church where she could quietly color at our feet during the service and did not take her out of town, except for visits to close relatives.

Baby sitters were not a word in our vocabulary. If we did have to go out at night, dh and I arranged for a relative to come and stay with us. One night, we literally had dh's aunt distract Jesse by the kitchen door, while we snuck down the stairs and out the front door to attend a black tie affair.

When Jesse was 4.5 years, her school conducted routine speech and hearing testing. They recommended that we have the county formally test Jesse to see if she qualified for speech therapy.

So we did.

And the county turned us down for services. They told us that all of her issues were developmental. She would improve her speech with age.

There were right on only one point, her issues were definitely developmental, just not the type they wanted us to believe.

By that time, we were already trying rather avidly to have another child. This time we only waited six months before seeking fertility treatments. After some initial tests, and before going back to Clomid, I found myself unexpectedly pregnant.

My fertility doctor made me come in every other day from week 4 through week 7 for blood tests to make sure my hormone levels were increasing regularly and put me on some medication to help me along.

Everything looked great, until the day I went in for my 7-week ultra sound.

I will never forget the look on the nurse's face when she refused to tell me anything and would not let me look. I knew exactly what my doctor was going to say. No Heartbeat.

They gave me a choice of scheduling an immediate D&C or waiting one more week for another ultra-sound just for peace of mind. We opted to wait and I found myself in the OR having a D&C two days before Christmas.

It was a very bad time for us. That was Jesse's first Christmas where she really looked forward to Santa Clause and I spent it on the couch on pain medication.

Blessedly, the New Year and Jesse's 4th birthday breathed new life into our family.

When Jesse continued to potty accidents in the fall of her 3rd year, we bribed her by booking a cruise on the Disney Boat for her next birthday. We showed her the video of the cruise ship and told her she could not go unless she was fully potty trained.

For the next several weeks, Jesse went around saying, "I stink in the potty, I go on the big boat by my birthday." In retrospect, that was probably her first complete sentence. And, sure enough, by Christmas that year she did just that.

The cruise itself was wonderful and a trial in patience. Jesse freaked every time she saw the Disney characters running around the ship and she lasted less than 15 minutes in the Kid's Club before they paged us.

In Jesse's defense, she was still fighting a 6-week ear infection; the result of losing her second set of tubes a couple of months before.

Needless to say, we ended up seeing the ship's doctor, going on stronger antibiotics and apologizing for several episodes of losing her lunch/dinner.

By the end of the cruise, we managed to convince Jesse to pose with a few of the characters when no other kids were around. Most of the time, as you probably know, everyone lined up for hours for the scheduled character photo-ops.

Not my Jesse.

Among her other issues, she was still rightfully sulking about her new, extremely short page-boy haircut; the result of a very bad hair stylist at our local mall. I had to take Jesse to another town with a special kids salon to get them to fix the damage and remove the rat-tail.

When we returned from Jesse's birthday cruise, we made a decision, which ultimately changed our life.

We decided to adopt.

Nianya

Nianya's World: How I Became a Special Needs Mother. . .

I started this blog a year and a half ago to reach out to other parents of special needs children, let them know that there are others in the world, who have been there and done that (BDTD) and provide my own version of bone dry cynical humor, while blogging about days in the life of a special needs parent.

Over the past several months I have acquired a small, but faithful group of followers, and, in the past two weeks, since I discovered Twitter, I have discovered a whole new special needs world. I love the ability to share stories, sites and information on the subject.

So, I have finally decided to go forward with an idea that I have been batting back and forth for more than a year now. Publishing my stories.

Most of my blogs include tidbits about my special needs life before blogging, but I have focused on our present life and never taken the time to write about how we started and everything we went though in the past 14 years.

If I can make myself follow through with this project, my plan is to blog every Sat. night or so with one chapter of our story. That's a good 20 chapters, which I intend to bundle together and submit to publishers until someone pays me for my story.

I don't expect to end up on Oprah or Good Morning America. After all, I only have two special needs children, not octuplets or John & Kate + 8. My story is like Joe the Plumber's. I'm just and average special needs mother, with a full-time job and good insurance (TG), who struggles daily to pay for medications, surgeries, doctor's co-pays and special services.

Yes, I could use money from the publication of my stories, but that's not my purpose in life. My purpose, ultimately, is to make sure that other special needs parents do not have to make a choice about whether to seek a therapy or go forward with medical treatments, because they can't afford the co-pays or out-of-pocket costs.

That's why a couple of friends and I started a non-profit called Lifeover Ministries, which now focuses solely on helping parents of special needs children.

When I sell this story, the profits will go to Lifeover, to help other families.

So here is the First Chapter in my story:

Hi, I'm Nianya, and I'm the mother of two special needs children.

Growing up in the south as the child of two doctors, I never thought I would be where I am now. After high school, I attended college, went to law school, spent 6 months overseas as a legal intern, moved to California to complete an advanced law degree (LLM) and met the love of my life.

I had an impressive resume: B.S., J.D., L.L.M. and my MRS, which as ever southern belle knows, is the only degree which really counts in life. Especially if you marry a former K.A. from Charleston.

Who'd have thought that I would have to go all the way to California to meet a true southern gentleman.

After we married, we stayed in California for a couple of years so that I could focus on my career, which was a true sacrifice from my husband, who was not admitted to practice there.

Then we moved to Atlanta, Georgia, looking to settle there between our two families, in Alabama and South Carolina. When we wed, we both agreed that eventually we would move to Atlanta, so that we could both work there.

So we built a house in the metro area, used our savings for a hefty down payment and spent the next few months settling in and looking for jobs. Back then, the job market was good, but not great for new attorneys with our particular experience.

Long story short, my husband, whom I will refer to from here on out as Dh, took a job as an associate with a very small real estate firm and I choose a position as an administrative assistant that was close to home and came with great insurance, because we were ready to start a family.

For the next several months, while we hope for a baby, we enjoyed the flexibility of being young, childless and in love.

After 12 months or so, we knew something was wrong. My cousins and friends were all having babies without blinking their eyes and all I got was my period every month.

Eventually we went to the doctor, tried Clomid and miraculously got a positive EPT, which I swear was the result of our 3rd anniversary celebration. You know the old saying: Give get some candy and flowers and get some day.

My pregnancy progressed wonderfully for all of two weeks after which I started cramping and bleeding. We endured a 6-week ultrasound and tried not to cringe when I asked the nurse if we could have a picture and she responded: "If we get a heartbeat."

I suppose you could say that our first ultrasound was the beginning of our lives as special needs parents. We got a beautiful picture of our daughter's heartbeat and orders from the doctor to cease and desist with all connubial relations for at least the next 3 months. So much for young love.

The next three months dragged by with the usual morning, noon and night sickness and my forays out to the local stores to order furniture and baby stuff, which we put on lay away.

After the initial bleeding, I had a normal pregnancy, or so we thought. At 13 weeks the doctor gave us the go ahead, which resulted in another round of bleeding after only one try and a second ultra sound, which showed a low lying placenta.

Diagnosis, separate beds for the duration.

Things got even more interesting when, in my 16th week, my hip suddenly gave out and I ended up in physical therapy wearing a pregnancy support belt so that I could walk with a cane. On the bright side, Dh and I had booked a trip to Disney World, which we had postponed from earlier in the pregnancy because I could not fly. He dutifully pushed me around the Magic Kingdom in a wheelchair, which got us instant access to all of the rides. At least the ones they would allow a pregnant lady to ride.

I had a moment of panic when I got to our hotel and realized that my usually very active baby had not moved for hours. Not since before we boarded the plane. Turns out the plane ride lulled her to sleep, because she started kicking me vigorously after I sat down on a bench for 30 minutes to relax.

We returned home after a wonderful trip and two days later, my company burned down and I was out of a job.

So I hit the unemployment ranks. In order to collect my $250 per week, I had to send out my resume, attend unemployment seminars and interview with anyone who was willing to hire me. The interviews always went well, until I told them I was pregnant. That's a deal killer.

At 24 weeks I had my next ultrasound at which they told me I had to come back in two weeks because they could not see all 4 chambers of my daughter's heart. They told me not to worry, because it often happened at this stage.

At 26 weeks, I learned that we were having a girl and I was referred to a perinatologist because the ultrasound showed an irregular heartbeat.

That was the last time I ever went to an ultrasound without Dh. I will never forget calling him when I got home and crying while telling him that we we're having a girl, but there might be something wrong with her heart.

We prayed for days while waiting for our appointment with the perinatologist for a fetal echo-cardiogram. We were understandably nervous when we met the doctor, but he immediately set us at ease. He turned on the machine and we noticed that it was in full color. Curiosity took the place or worry as I asked him if it was a more sophisticated ultrasound machine. "No," he said, "just a more sophisticated doctor. Anyone can crash a Porsche."

I doubt many parents get the chance to see they're baby's heart in full color. It's quite amazing. After only a couple of minutes, the doctor asked if we'd like to see the rest of her. Of course, we said, and asked him if he could confirm her sex. He videotaped 20 minutes of our sweet daughter on the ultrasound and said he was 95 percent sure she was a girl. He did not get his 100 percent look.

So we went back home in high spirits and I resumed my job search.

I vividly remember my last interview when I was 7 months pregnant. They offered me the job and asked when I could start. I said, well I really should let you know that I'm having a baby in a couple of months. The look on the interviewers face was priceless. I was wearing a maternity suit, but wasn't really trying to hide my belly.

Less than a week later, my interviews stopped abruptly when I started having contractions at only 27 weeks. After a trip to the hospital, I found myself on medication, monitoring and complete bed rest for the duration of my pregnancy.

Needless to say, I was scared out of my mind at first, but quickly got into a routine. I was allowed to get up for backroom breaks and showers, but not allowed the stairs more than once a day.

Dh moved a small refrigerator and microwave into our bedroom and left me soup or something to heat up for lunch each day. Dinner consisted of frozen foods or take out. Let's just day that I didn't marry Dh for his skills as a cook.

At 30 weeks, I got the doctor's permission to travel to Alabama, so that we could spend Thanksgiving with my mother. My contractions were under control, or so I thought.

By the time we reached my mother's house 3 hours later, I was in labor. Luckily my mother, a doctor, was very familiar with the local hospital where I spent the night. They kept me heavily sedated, so I didn't know until much later how close I came to giving birth. My daughter was head down, engaged and pressing on my cervix, which had started to dilate.

I know God was watching over us that night, because my contractions slowed and I was allowed to go home where I spent several hours at our local hospital in Labor & Delivery (L&D). They upped my medication and told me to stay in bed until 36 weeks if I made it that far.

I spent the month of December making Christmas items, including a hand-made felt stocking for our daughter. I never actually finished the stocking, because I was afraid that if I did, she would be born before Christmas.

The holidays were tough. My contractions started up with a vengeance again on Christmas Day, but they opted to up my medication rather than sending me to the hospital. Apparently the doctor on call did not want to come in.

On New Years, we had a repeat performance. At 35 weeks I had had enough. I agreed to one more week on the medication and at 36 weeks, when they stopped my meds. I went into full labor.

That's when I learned that I had an iron cervix. I dilated to two centimeters and stayed there for a couple of days, while I endured constant and painful contractions. I also swelled up like a pig from what they diagnosed after the fact as pre-eclampsia.

Long story short, my water broke at midnight on the third day, I was admitted to the hospital and induced with pitocin the next morning, because my contractions, while off the chart, were not progressing properly.

In the end, I dilated from 2-10 centimeters in less than 30 minutes, they had to call my doctor back from her lunch break and I nearly ended up with a C-section due to my baby's dropping heart rate before Jesse came into the world with the use of forceps. She was 8 lbs 4 oz at 36.5 weeks and had a huge head.

Back then my insurance would only pay for 24 hours in the hospital so they sent us home the next days even though Jesse's blood sugar was low and I had hemorrhaged after her birth.

Or first two days were a blur. Jesse cried all the time, because I was trying to breastfeed and had no milk. I was exhausted, not healing very well and had no idea what to do with a newborn.

Thank heavens my mother had the sense to insist on paying for a nurse to come to our house to check on me on the third day. The nurse also checked on Jesse and immediately noticed that she was jaundiced.

They doctor's opted to treat her at home for the next 10 days with a light belt that covered most of her body and daily home visits to check her blood count.

Jesse had to stay on the non-portable lights 24/7, except for a daily bath so she had to stay in her cradle right next to our bed the entire time. All of our early pictures of her consist of one of us sitting on the edge of the bed holding and/or feeding her.

We also had to feed her formula every 2 hours and keep track of home much she ate, drank, peed and pooped. So much for breast feeding.

And so her life began and our life changed drastically.

The first couple of months were really tough. Jesse had colic or so we thought. We were giving her soy formula because they tried milk formula in the hospital and ended up having to pump her stomach because she could not tolerate it.

I wish I had known then, what I do now. Jesse was colicky, she was reacting to the soy formula and should have been put on Alimentum. Eventually, though, she stated tolerating the soy and we had a great few months with our new daughter.

I went back to work as an attorney, Jesse attended a wonderful home daycare and grew like a weed and Dh managed to transition from working as an associate to being a solo practitioner.

When he called his boss in the hospital to tell him the good news, his boss generously gave him the rest of the week off and told him he wanted to talk about Dh going independent when he returned.

We attended all of our scheduled new baby visits, Jesse got her three rounds of shots and at 6 months we noticed a yellow spot on her head and a tiny red dot on her cheek. The pediatrician said not to worry, they looked like bug bites.

At 8 months, the tiny spot began to grow into a blood bubble and at 10 months the bubble burst and started bleeding uncontrollably.

Turns out the spot was a hemangioma, which was connected to an artery. We were referred to a plastic surgeon, who scheduled Jesse for surgery the next day. At least we didn't have much time to think about it and we were grateful for a diagnosis after a week of bloody sheets from her hemorrhaging face.

Our plastic surgeon was great and even removed the yellow spot from Jesse's head just to be safe. He had us come back at 18 months to see how she was healing and recommended additional surgery to fix Jesse's scar. we opted to wait until she was older and give her the choice.

Unfortunately, we were not so lucky with the yellow spot. The biopsy came back with a diagnosis of juvenile xanthogranuloma, which is a pre-cancerous lesion. We were warned to watch for future lesions and have Jesse's eyes examined by a specialist each year, because the condition can cause lesions on the optic nerve that would lead to blindness.

Over the next 2-3 years, we sold out first house and built a new one, endured Jesse's constant ears infections and spiking fevers, which only subsided with two sets of ear tubes, and decided that we had a very difficult toddler.

The only thing we knew about autism we had learned from watching Rainman and ,like most uneducated parents, we associated autism with children in institutions.

Jesse babbled at 4 months, but never developed her speech, and communicated by pointing and/or screaming, but she grew like a weed, started pulling up at 6-7 months and walked at barely 10 months. She refused to eat baby food at 9 months and insisted on eating whatever was on our plate. This resulted in several choking episodes, but, as luck would have it, Jesse had reflux so when she choked she spewed.

Jesse also learned very early on that her Montessori toddler teacher would call us to come pick her up, if she threw a fit. She screamed, gagged and inevitably threw up on a daily basis. Try telling a teacher your child is not sick, she's just throwing a tantrum.

Jesse also developed an aversion to most clothing, particularly dresses. From the time I found out that I was having a girl I bought all these adorable dresses and clothes to show her off in. Turns out Jesse didn't want to be shown off. She preferred being naked and shoeless.

After being scolded umpteen times for going out of the house without her shoes, I found her in the yard one day with nothing but a diaper on, but I had to laugh, because she was wearing her shoes.

I gave up on the dresses when she was three after an Easter scene, which I will never forget. Jesse threw her typical kicking and screaming fit on the floor when I put her Easter dress on. Later, after church, she screamed at us and kicked and scratched us when we tried to sit her down in a restaurant booth for Easter lunch. I spent lunch in the car after pinning my screaming child down in her car seat.

Those fits should have been our first clue. They happened all the time. We quickly lost the ability to go anywhere without worry about something setting her off. Jesse wouldn't sit in a stroller and she refused to hold hands. We would go to Sam's club, turn our back for a second and realize that she had wondered off. If you grabbed her hand and tried to bring her back she would lie down on the floor, kicking and screaming.

I had to carry her out, even though she was getting too big for me to control. If Dh carried her out screaming, people would look at him like he was a kidnapper. He used to joke that he should wear a sign saying "I'm the daddy, bugger off." We could laugh or we could cry.

Nianya

My little Vampire. . .

Actually, to be totally truthful, Taz now reminds me of Mr. Jaws from Moonraker.

We went into surgery today with 4 stainless steel molars (from his first oral surgery only 1.5 years ago) and came out with all steel molars and a couple of canines.

This was Taz's 5th surgery and a very difficult one for me. We had to make a tough choice. If were weren't aggressive enough, we would have ended up back in the OR for more oral surgery in another year.

So we opted to do as much as possible. End result, Taz is virtually toofwess.

So far, he's taking it pretty well.

Our timeline via twitter in reverse order, It's more fun to read that way:

• 7:30 pm: Exactly how much does the tooth fairy have to pay for 8 teeth during a titanic recession?


• 5:00 pm: I managed to get my nap but woke up feeling like I was given anesthesia today; I've been fighting a nasty infection for two wks.


• 2:30 pm: Trying to get Taz to lay down in his Spiderman tent for a couple of hours; SNK mom needs a nap.


• 1 pm: Out of the mouth of an ASD babe--“I ust wan mi bwekfst”; his day can't start w/o that routine.


• 12:30 pm: World's fastest recovery; they let us go 30 minutes after he came out of post-op; Taz hates IVs.


• 11:00 am: Trying to read a book; can't concentrate too jittery.


• 10:00 am: Not a faulty pager; surgeon had a question; couldn't he have asked before; raw nerves and Dh is acting like he had versed, not Taz.


• 9:45 am:It was not fun watching them put Taz to sleep and now they're paging us. Just my luck we've got a faulty pager. GRRHH!


• 9:15 am: I must have lost my mind sitting here in a CDC space suit, so I can walk Taz into the OR. Never did that at Children's.


• 8:30 am: I feel like I'm in jail with the energizer bunny; at least Children's where we've gone before, had a kid's pre-op play area.


• 8:00 am: The wai-a-ting is the hardest part. Where's my Ipod when I need it.


• 7:30 am: Taz is such a riot; he's almost 7, but the size of 4-year-old and busy making friends in the waiting room.,


• 7:00 am: At the hospital; Taz is wide awake and wired; no ADHD meds allowed this morning.


• 5:30 am: Time to get Dh moving; have to leave for the hospital in 30 minutes.

If you've made it this far in reading the blog, you're probably wondering when I'm going to get to the punch line.

Well, I hate to disappoint you, but there really isn't one this time. I can only say that there our three things about today, which I will always remember:

In pre-op. Taz asked the nurse if she had any paper and crayons. It's sad to say that he's used to the comforts of the Children's hospital and they no longer accept oral surgery patients, who are not severely medically compromised. Since we're only moderately medically compromised we had to go to a regional hospital that we've never been to before.

That is one of the reasons, I was more antsy than usual. We know what to expect and like the routine at the Children's hospital. I think Taz was one of only two children in surgery this morning (the other one was a younger patient of our oral surgeon).

So I was amazed when the nurse said, no we don't have any paper and crayons, but I can give you a bear.

And, not just any bear, a handmade bear in Taz's favorite color, made with love by a local church. I have to say that is the sweetest gift we have received since Taz got a special Ty beenie baby stork for new born preemies when he was in the NICU. Also donated by a local charity.

The second thing I will remember was having to dress up like an astronaut in a CDC disposable surgical suit so that I could walk Taz into the OR and stay while they put him to sleep.

I don't do well in hospitals and this was not part of our OR routine. He always got liquid versed i.e. loopy juice 15 minutes before hand and was laughing and giggling when they wheeled him away.

I got queasy just thinking about going into the OR, but sucked it up and did my best. Luckily it was freezing in there so I didn't start to faint until after they walked me out.

Finally, I will never forgot what Taz said to me when we got home and he finally got to eat his breakfast at 2 pm. He wanted french fries and his GFCF bagel with jelly, which I gave to him, even though the bagels are hard as rocks. I wasn't about to argue with him, because he was still very grumpy from the anesthesia and his pain meds were wearing off.

And, as expected, Taz cried out when he tried to bite into the bagel after he finished his fries. But, then he looked at me and said the most amazing thing: "I'm going to save my bagel until my grown-up teeth come in. Okay, Mommie?"

"Okay Taz!'

Special Needs Children are amazingly resilient!

Nianya

Just a few dental caries. . .

That's what I get from the hoity toity doctor we saw today for Taz's pre-op.

Not my choice to see that doctor and we'll probably never see her again, but you'd think she would read the medical history I meticulously filled out two weeks ago when we came in for our first pre-op before she asks me if Taz has a history of any medical problems other than dental caries.

Of gee, I don't know. How about pneumonia!!!

Perhaps they forgot to write that down on his chart two weeks ago when we postponed his surgery, because he couldn't breathe.

Okay, I exaggerate just a bit, he could breathe, just not without hacking up his lungs.

Seriously, I should be able to sluff this stuff off by now, but I'm just a bit on the edge today. More than a bit, actually, and I'm incensed that a doctor had the nerve to reduce Taz's issues to a FEW DENTAL CARIES!

If you follow my blog, you know that Taz has run the gammit from prematurity to previous major oral surgery and everything in between. To make a long story short, he's an adorable almost 7-year-old midgit, who is about to lose several teeth and get the rest of them capped with stainless steel to preserve them until his adult teeth come in.

He's very proud of the silver molars from his previous oral surgery. . .all that he remembers of that trip to the OR.

And, memory is the biggest problem we face tomorrow.

This will be his 5th time in the OR in 6 short years. He has very little memory of the previous surgeries. He was only 4.5 years old the last time.

Now he has a memory like a steel trap and he's asking questions I don't want to answer.

• Will the hospital have shots mommy?
• No Taz (IVs aren't shot).
• Would you like to give the tooth fairy some teeth this weekend Taz?
• No mommy, none of them are loose enough. She'll have to wait awhile!

I'm so tired of having to be the strong one, but I have no choice. I'm a special needs mother!

And, when I start to panic tomorrow, I will remind myself that there will be two pairs of strong arms holding me tomorrow on the way to the OR.

Taz on his loopy juice, hugging me goodbye, and God, lifting me up and carrying through it.

Nianya

Some people just need to Get a Clue. . .

As the mother of two special needs children the past several days have been typically over stressful. It started last week on the way to my son's pre-op.

• My daughter's ortho called to remind me that we missed her appt. and to tell me that I owe a $35 missed appt. fee. I say, I think not, my son is having surgery on Friday, give me a break.
• At pre-op, we learn that my son has pneumonia and his surgery has to be postponed.
• We go to urgent care for a chest x-ray and they tell us he has to stay home for 5 days.
• I fax the doctor's excuse to the school and get a call the next night telling me that my son missed school that day. YAH THINK!
• My son finally goes back to school today and comes home with a note from the P.E. teacher saying he's in trouble for not wearing tennis shoes at P.E. again (HELLO he has pneumonia.)
• And, to top it all off, my son is now reacting to his antibiotic.

I was going to throw the P.E. teacher's note in the trash and pretend I never saw it, but, in my current mood, I'm seriously thinking about responding:

GET A CLUE!!! My asthmatic, ASD/ADHD son has PNEUMONIA! The last thing he needs is P.E. right now.

If the teacher is lucky, I will calm down by tomorrow. If not, C'est la vie!

Nianya

All I want for Christmas is my two front teeth. . .

My generation all grew up on that now famous Christmas song. I remember when my ASD daughter lost her two front baby teeth at about 5.5 years and anxiously waited until her permanent teeth filled in the gap. We've been very lucky with our daughter. She has healthy teeth that came in relatively straight and has tolerated her braces well (okay maybe not well) for more than 1.5 years (mostly b/c I got adult braces at the same time.)

We're not so lucky with her almost 7-year-old ASD brother, who was premature, suffered from severe reflux from birth until recently, was diagnosed with asthma as an infant, and, as if all those factors aren't bad enough for baby teeth, has a congenital problem with his enamel or rather the lack thereof.

All of these factors resulted in major restorative oral surgery at age 4.5 and we are now facing another round of surgery next week, to repair, crown and/or remove his remaining baby teeth. Oh, and I forgot to mention that he's also extremely small for his age with a tiny jaw i.e. no room for permanent teeth.

So next week he goes back to the ER for his fifth surgery in less than 7 years. When he wakes up from the anesthesia he's going to have huge gaps in the front of his mouth where the 8 teeth that have to come out are currently located.

We have gotten through his prior surgeries by not telling him much of anything. We take Dr. Bear to the hospital with us, along with comfy blankets and stuff for our stay, we play while he gets his prophylactic breathing treatments and loopy juice (Versed, great stuff) and kiss him and Dr. Bear goodbye on the way to the OR, while he giggles away.

A hour, or two or three later, he comes back to us sleeping like an angel, until he wakes up feeling like a bear in a bear trap (Versed, nasty stuff). He screams, tries to yank out his IV and with any luck goes back to sleep for awhile while his pain meds. kick in.

Sounds like a routine, huh.

NOT!!!!

I have no idea how to explain to him that he's going to wake up without his teeth. We can't tell him before hand, he'll freak. He has major SID issues with his mouth, textures and food. Last time, all we said, once the nasty anesthesia hangover wore off, was that he got these great new silver teeth (expensive stainless steel crowns). This time all he will have left are silver teeth!

We know it's only for months, maybe a year or so, before his permanent teeth fill the holes. We also know that we don't have the luxury of removing these teeth one at a time, like most dentists would do as the perms come in. With a medically compromised child, you have to be aggressive. The last thing we want is to have to go back to the OR again in another year.

I keep praying that the next surgery will be his last. I will continue to do so, even though we know he has a 50/50 chance of needing sinus surgery again at age 8 or 9. We also found out during this go round that he has a narrowed airway. I guessed that a while ago, since he keeps getting croup, which he should have long out grown, but hearing it from a doctor hurts.

Still, we are very blessed, and once he gets over all this, he will probably have a great time wearing a variety of fake teeth.

He's a clown, that Charlie Brown.

Nianya

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.

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.

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

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

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