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.

The Atlanta Botannical Gardens - A Sensory Experience

Having lived in HotLanta for more than 15 years, I am ashamed to say that I have never been to the Botanical Gardens before today. My dh tried to defend that major faux pas by saying that lots of people live in Atlanta all their lives and never go to the zoo or aquarium, but I always loved gardens as a child and I still do.

I have to say that I was absolutely amazed. I had no idea how extensive, beautiful and absolutely imaginative the gardens are. I was also unaware that the gardens are currently featuring the amazing Moore in America exhibition of bronze sculptures.

But more importantly, the gardens are the perfect sensory experience for my two autistic children, particularly my 7 year old, who happily wandered among the gardens, fountains and hands-on children's exhibits like an elf flitting about the woods. He was in heaven.

My 13yo was happy to hear that we plan to come back for a much longer, more leisurely visit later this summer, while her brother is visiting his cousin. Dd is like me, she wants to soak in the scenery a little bit at a time.

And there is nothing more calming that water features literally sprinkled throughout the beautiful gardens.

The best thing of course is that we can go back whenever we want. I can't wait to go to one of their evening exhibits. Sans children perhaps.

Nianya

How I Became a Special Needs Mother - Chapter 3

I have been very remiss in my blogging.

As you all know, I vowed back in March to blog once each week about my evolution as a special needs mom. Well it's Memorial Weekend, 2.5 months since my last chapter, and I have no one to blame, except Twitter.

Twitter is a viciously addictive and hopelessly easy method of communicating for those, like me, who are socially handicapped. In my case, the jury is still out as to whether I am physically or voluntarily handicapped. Nevertheless, I have spent the past 2.5 months tweeting my heart out 140 characters at a time.

And so, back to my story. . . where was I. . .oh yes.

Upon returning from Jessie's 4-year birthday cruise, Dh and I decided to adopt. A decision, which changed our lives forever, but not in the way you probably think.

We researched adoption agencies, secured our finances and jumped in head first with the Independent Adoption Center.

And by head first, I mean to the tune of $16K, with the hope of adopting a second child within 18 months from the date we signed.

NOT

It took us a good 6 months to get completely approved, even though we paid all our fees up front, and then the waiting began.

After a year, I began to wonder. Shouldn't we be higher on the list by now? Shouldn't we be getting calls from potential birth moms?

Apparently not, and by the way, you owe us another $2K for an annual home study update, but you can speed up the process by going on the last minute call list.

The WHAT list?

The jump on a plane at the last minute and be prepared to spend a couple of weeks in the middle of nowhere list at any cost.

After 18 months of waiting we were ready to jump on a plane to Timbuktu. We just wanted another baby.

Friends be careful what you ask for.

What I got was the answer to my prayers or so I thought.

A prospective birth mother, due in 4 months, from a neighboring state.

We paid to bring her to our home for a visit, arranged for a deposit on a trailer, because she was about to be homeless, paid for a phone line so she could call us, sent a grocery gift check so she could eat and agreed to provide her with an old vehicle to drive.

Oh and did I mention the attorneys' fees we paid up front, because our agency was not registered in that state. I could have sworn they said they would associate with one.

A couple of days before we were scheduled to drive our old truck to the neighboring state and turn over its title, we g0t a call from our agency. Apparently our birth mother had been shopping her ultra sound to other couples as well, including other IAC couples.

We contacted the authorities, cancelled any future payments and walked away $6K poorer, but a heck of a lot wiser.

A couple of weeks later I got a call from a woman in NY, who wanted to know about our experience with this girl. I said she scammed us, but the couple in NY were prepared to take up all of her payments through birth. Why call me if you don't want the truth? I'm sure the woman was desperate to be a parent, but I sincerely doubt that girl every actually gave up her child.

Still, I tend to forget that God works in mysterious ways. After the adoption scam fiasco, we ended up right back where we started.

Yup that's right, Fertility treatments.

And on that note, I must digress a bit.

My Christmas 1999 miscarriage started a chain reaction in my body, which quickly resulted in a diagnosis of Stage 4 Endometriosis. Somehow my former doctors missed that diagnosis when I underwent a laparoscopy at age 21 for unexplained bleeding and pelvic pain.

My RE had ruled that out as a possible explanation for our secondary fertility, because it wasn't mentioned in my prior medical records. And yet, when my RE performed my laproscopic laser surgery, he found extensive scar tissue dating back at least 15 years.

After my surgery my RE told us that my Endo would go into remission, if I got pregnant, so he encouraged us to try again. At the time, we were still set on adoption. After all we had nearly $20K and 18 months invested in our quest.

So we waited another 5 months, endured the ill-fated birth mother fiasco, over Christmas and New Years, and then did what all people do after two miserable holidays.

We went on another cruise, for Jessie's 5th birthday.

And, yes, she was sick on that cruise as well. Another incurable ear infection, which led to pneumonia, but once again I digress.

We decided while on that cruise that we might as well go forward with the recommended fertility treatments. We were convinced that we had to endure the treatments and the inevitable failures, so that we could go forward with an adoption knowing we had tried everything.

We tried two rounds of cheap Clomid, which resulted in. . .more cysts, a very bad mood for both of us and no baby.

Then, with my mother's financial assistance, we proceeded with more expensive treatments. Three rounds of IUI via high-powered, very expensive fertility drugs.

Each month I endured twice daily injections and traveled to the doctor every other day for blood draws and ultrasounds. I responded so well to the drugs that my RE asked how we felt about multiples, because he was sure I would get pregnant with twins or more.

NOPE NADA NOTHING

Month after Month.

So, finally, with insurance paying for another $12K in fertility drugs, my mother kicking in a good $10K and us covering the rest, we did what we swore we would never do.

Yup that's right.

In Vitro Fertilization or IVF for short

After trice daily injections and all the other IVF "tortures," I produced more than 30 follicles, 12 eggs, and 11 fertilized embryos and we waited, not so patiently, to see if we would go forward with a 3-day transfer of 3-4 embryos or a 5-day transfer of 2 blastocysts.

In the meantime, I shared my experience with a group of other women going through IVF at the same time in INCIID's IVF Waiting Room.

There I found the support I had been looking for all those years. The women and men I met through INCIIDs various infertility, IVF, pregnancy and parenting boards provided me with the on-line support network I needed to endure the IVF process.

And so, on day three, I was able to post on the IVF Waiting Room that the doctor had informed us that we were GOING TO BLAST i.e. two more days until my embryo transfer and a much greater chance of success.

Two days later, the RE transferred Taz and his twin blast and I entered the 2ww (2 week wait).

For the next 9 days the IVF waiting room was my only life line.

Day after day, I posted in the waiting room, 1dp5dt (1 day post 5-day transfer), 2dp5dt and so on, until I couldn't take the suspense any longer.

On the 9th day I sought out my stash of HPTs (home pregnancy tests) and waited breathlessly, while I watched it turn blue. I thought I was going to faint, but somehow managed to get back to my computer and post that the HPT was positive at 9dp5dt, one day before my scheduled blood test at my REs.

After all that time and all we had endured, I was pregnant again, and I am still in awe of the moment when Dh came home from work and I was able to tell him that the rabbit died.

I still have that silly stick stuffed in a drawer some where and it's still blue after more than 7 years.

Brighten Academy Day 3 - Merritt Island

What a beautiful barrier island. We saw a lot of it yesterday going back an forth between Cocoa Beach and the Space Center, but we got to see the National Wildlife Refuge today.

We started with a presentation on Manatees, Florida's protected "Sea Cows." They so ugly their cute and we got to see three of them at the Manatee lookout. We learned that the Manatee cannot exist in water colder than 68 degrees, they live an average of 14 years in the wild and they do not produce their first offspring until about age 5.

Then we stopped at a picnic area where we had lunch and spent the afternoon testing the water quality and temperature and then seining the Indian River Estuary for tiny fish, crabs, jelly fish and sea squirts among other strange plants and animals.

The kids had a great time with their nets in the brackish water and even more fun examining and playing with their sea life before returning all the creatures to their natural habitat.

I had no idea that Horse Shoe Crabs have not evolved in 200 million years and that they don't even mate until their 20 years old. No wonder their crabby!

So, tomorrow, we are off to Orlando to spend the day at sea world before heading back. I probably won't have an opportunity to upload tomorrow's photos until Sun night, since I plan to crawl in bed at 2 am when I get home Sunday morning and not get up until dinner time.

So I'll Catch you Later!

Nianya

P.S. For all the dedicated parents at home reading this blog, you can order a picture CD of the posted photos at the spring fling. All profits will benefit Brighten Academy.

Brighten Command We Have a Problem. . .

The kids are having toooooo much fun and the chaperons are exhausted. Well, this one is at least. Look at the slide show and read my last 10 tweets above and you'll see why.

Not to mention the fact that I just uploaded today's pictures and its 11:30 pm.

Hopefully tomorrow I will have more time to talk about today.

Tomorrow we go to Merritt Island and it promises to be beautiful and hopefully slower paced.

For anyone who's actually up reading this blog at the moment.

OVER AND OUT

Nianya

Brighten Academy Cape Canaveral Day 1 - The BUS

After spending 11 hours on a bus with 60+ middle schoolers, I have learned that they have an entire world of their one: language, technology, speech. . .you name it.

True, one of these kids is my 13-year-old daughter, but she is autistic, so this was my first real dose of Middle School 101.

As you can see from the pictures, they are a lively bunch. I expected to have to listen to my I-pod non-stop at full volume. I actually only had it on for 2-3 hours total during the trip.

It was a beautiful sunny day, the kids were relatively well behaved, on and off the bus, I learned that Nintendo DS allows wi-fi chats between buses (which is not necessarily a good thing), even on the highway, and I re-learned the meaning of the word patience.

No, I'm not talking about the kids. I'm talking about the most awaited event of this trip:

THE SHUTTLE LAUNCH

I was so psyched to photograph and videotape the launch tonight, only to find out at 3 pm that the mission was scrubbed for today and rescheduled for tomorrow.

That was a real bummer at first, since Kennedy Space Center is closed for the launch.

Then we got word that Kennedy agreed to let us come, because we already have tickets, and said we can stay and view the shuttle from there, if it launches tomorrow night.

I'm thinking it's providence. Surely I can't be this lucky and have the rug pulled back out. This is the opportunity of a lifetime for these kids.

PLEASE PLEASE PLEASE launch tomorrow night.

And the verdict is: http://www.nasa.gov/centers/kennedy/home/index.html

At least we get to see the shuttle on the launch pad. Unfortunately, I think that means that we will not be able to go to Merritt Island, since it will remain closed.

As they say, tomorrow is another day and an exciting one.

Nianya

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

The Invisible Woman. . .

A friend sent me this video today, on a day when I really needed uplifting. Some things just speak for themselves and this video could speak for all special needs mothers, particularly me.

Just change the hair color to red and I'm there.

My husband says I've gotten weird, because I wear all black. Maybe so, but it's easier, not to have to make a choice. I prefer to blend in, to stand on the outskirts and in the fringes.

Watch and you will see me, the Invisible Woman.

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

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

Not just a walk in the park. . .

My life that is.

If you followed my twitter today, you know that we went for Taz's pre-op found out he had pneumonia and had to reschedule his surgery. Our visit to urgent care was almost comical. The doctor couldn't believe I was taking it all so well.

BTDT: When the Pre-op nurse practitioner said he had active wheezing and crackling in his lungs, I already knew what the X-ray would show. This is the umpteenth time he's had pneumonia. I suppose you'd call it walking pneumonia, but with Taz, it's more like whirl, stop and cough, whirl, stop and cough, and whirl some more.

We don't call him the Tasmanian Devil for nothing.

It does start to wear on me a bit. When I finally got home at 3 pm after leaving the house at 9:30 for the pre-op, I collapsed, and slept for 2.5 hours until my Blackberry alarm went off to warn me that I had to get back to Sam's Club pharmacy to pick up all his scripts before they closed.

On the way there, I get a call from Taz's school:

Hellooo (insert recorded British Accent), I'm calling to inform you that you son or daughter was absent from school today. . .

I hang up, LMAO and LMAO some more.

Didn't they get my faxed memo saying that he had PNEUMONIA???

BTW: If you're following this blog, I hope you check out the Daily Inspirational Quotes. Today's was very fitting.

"Humor is the great thing, the saving thing. The minute it crops up, all our irritation and resentments slip away, and a sunny spirit takes their place."

Mark Twain

Nianya

P.S. I swear he's almost 7 even though the costume his sister wore at age 3 is still too big.

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

Peanut Butter Recall. . .

I have to say that I'm very glad my food allergic child has never tried peanut butter and we don't regularly keep peanut butter in our house; however, I heard last night that the FDA has recalled more peanut butter products, including candy and diet bars, both of which we have in our house.

Please check the recall list:

http://www.accessdata.fda.gov/scripts/peanutbutterrecall/index.cfm

and your own kitchen/pantry for these products.

Nianya

Communication 101 . . .

As parents of a child, who is high-functioning autistic, we continually strive to improve our daughter's communication skills. Social skills and speech therapy, counseling, excursions with other special needs children etc. etc. etc.

This weekend I got a lesson in teenage communication during my daughter's 13th birthday sleepover.

The lesson: any1 can tx n tx n tx.

Five teenagers in the house for the nite, one phone (since half were phone grounded) and all they did (between eating and playing the Wii) was text and text and text. . . all nite.

The next morning, I asked them if they would text my daughter, if we got her a new phone.

"ARE YOU KIDDIN?" they said "WE'LL TEXT HER LIKE CRAZY"

So, after clearing the house of the party yesterday, we headed off to Verizon to acquire a new phone. My daughter had only two requirements: It had to be a messaging phone and it had to be blue.

The guy at the store kept asking me if I was sure I wanted the phone we chose, because we could not return it. Teenagers can be really finicky he said. I finally told him:

My daughter is autistic, it's blue and she can text. End of story.

Of course, my husband was sceptical too. What if she doesn't use it, he asked. I said, no worries, her friends will get her texting.

Soooo, last night, while I was trying to catch up on my e-mail and e-news, my daughter comes running into my office, completely out of breath, shoves the phone in my face and waves her hands (interpretation: Someone sent me a text, how do I text her back.) Together we figured it out and to make a long story short:

She spent half the night texting, started again this morning and wavered on going to the gym with her father until he reminded her that she could take the phone with her and text from there.

The moral of the story, speech is not an impediment for a textin teen.

Nianya

National Autistic Society

How the Grinch Stole Christmas. . .

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

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

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

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

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

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

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

How about the AFLAC Duck!!!

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

Aflack, Afflaacckk. . .AAAFFFLLLAACCKK!!!!

Take that you mean and nasty grinch.

Happy Holidays,
Nianya

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

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

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

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

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

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

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

So what's wrong with this picture?

We're not in it!

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

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

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

What!!!!

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

Shame on us!!!

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

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


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


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

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

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

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

Nianya

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

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.

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.

One Gigantic Step Forward. . .

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

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

and

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

I had no where to go but up.

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

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

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

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

SERIOUSLY!!!

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

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

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

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

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

2. What do you like most about the college?

3. Do you have a soccer program?

4. Do you offer athletic scholarships?

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

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

Nianya