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.

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

Valentines is just another day in Holland for a special needs mom. . .

Sometimes I think the "real" world could do with a few less holidays.

When you're a special needs parent, its hard enough to remember and schedule your children's daily routines and medications, keep their doctor's appointments and get there on time, worry about day care while your other children are in surgery etc. . .

Not to mention trying to work full time and get all you Continuing Education Credits.

How the heck are we supposed to remember things like Valentines cards for our kid's classmates?

I'm not even sure they celebrate Valentine's Day in Holland!

My son has been in public school for one month, he's missed at least a week of that time for doctor's appointments and sick days and he has surgery scheduled during next week's winter break.

He went to school early this morning before his ADHD meds. kicked in, because Mom and Dad have to attend an all-day CLE seminar today to get credit before the March deadline.

And, while I sit here trying to catch up on the news and all my e-mail, I suddenly remember that today is Valentine's Day at school.

It's also Friday the 13th.

So with my luck, instead of remembering the pneumonia he had last week or next week's surgery, my son will remember this day for the rest of his life!

He will never let me forget the day I sent him to school w/o his Valentines!

Nianya

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

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

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.

Back off Biden. . .

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

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

Nianya

Angry Mom of Special Needs Children. . .

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

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

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

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

Nianya

Oh Captain, My Captain. . .

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

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

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

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

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

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

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

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

Nianya

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

The "Eyes" have it. . .

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

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

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

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

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

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

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

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

"Mommy, you bought me a MONSTER DOLL!"

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

Better a monster in the bed, then under it.

Nianya

$4 Gasoline, Rising Interest Rates & A Tanking Economy

I'm back with a vengeance my friends.

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next time,

Nianya

Your ear is blue and its blinking. . .

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

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

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

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

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

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

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

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

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

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

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

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

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

Nianya

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

Life's little joys. . .

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

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

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

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

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

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

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

Nianya

Life in the fringes. . .

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

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

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

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

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

Nianya

Left of Center. . .

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Nianya

Links: Free Web Browser for Autistic Children

The camera doesn't lie. . .

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Nianya