Walking a very fine line. . .

Today's Autism Learning Felt Blog

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

Cheers,
Nianya

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

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

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

Shedding Layers . . .

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

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

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

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

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

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

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

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

Nianya

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Nianya

What's this world coming to. . .

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

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

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

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

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

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

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

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

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

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

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

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

Let's put an end to sponsoring trash talk.

Nianya

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

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

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

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

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

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

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

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

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

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

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

ARGHHHHH!!!!

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

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

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

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

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

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

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

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

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

Nianya

Marriage and the Special Needs Child. . .

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

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

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

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

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

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

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

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

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

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

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

Nianya

Links:

Providing for Employees with Special Needs

The Autistic Family Life Cycle: Family Stress and Divorce

The Relationship Factor: When Special Needs Challenge a Household

A Mother's Guide to Survival in a SID World . . .

Say what?

Sensory integration disorder (SID), also called sensory processing disorder or sensory integration dysfunction. In our case a dysfunctional family.

I prefer to dress in grey, black or tan cotton clothing, since I can buy 3 of each favorite clothing item at Sam's Club for the price of one item at the mall and I always have one on, one off and one in the wash. I know that the black shirt, which I have on today is clean, even if it looks just like the one I wore yesterday, and, I know who my true friends are. My friends are the ones, who think I'm eclectic, while everyone else thinks I'm nuts.

If you are a parent of a SID child, you probably aren't laughing about my attempted humor.

Try explaining eclectic to a 12-year-old child, who dresses in the same clothing every day, because it's the only way she can function. Ask me how many times I have spent $$$ for pants for my autistic daughter, because they were on sale and she swore those were the exact pants she wanted for school next fall. Fast forward and ask how many times my daughter went ballistic when I informed her that it's now time to wear those pants. It's not her fault, she wants to fit in, but she can't function when her clothes don't fit or feel exactly right.

A couple of years ago, my daughter wore the same hooded sweatshirt to school every day, because it was plain gray with SOCCER on the front and soccer was her thing back then. This year it's an old army jacket from the surplus store. Yup, you guessed it, now she's into Army stuff.

Ironically, both mother and daughter are in fashion this year. Eclectic is back in style and lots of pre-teens are into the grunge look.

If you are not the parent of a SID child you probably stopped reading this blog when I mentioned a 12-year-old that refuses to wear what's in her closet. If you're still reading, let me ask you this? Have you ever seen a 12-year-old freak out (i.e. have a complete panic attack) before getting out of the car at school, because you told her to wear her jacket and half the other kids at school don't have one on?

Again you probably think this is normal pre-teen behavior. To a point it is, but, with a SID child, the inevitable panic attack can affect her entire day. She may stop communicating, cry for hours or shut down completely so that she spends the entire school day in her own world.

What's a parent to do when it's cold and rainy and your child refuses to wear a coat?

• Do you let them learn their lesson and freeze in the rain?
• Do you force the issue and make them wear the coat, which inevitably ruins their day and makes you the bad parent? or
• Do you sit in the car and try to reason with them while the other parents in cars behind you honk and yell for you to get out of their way?

The answer: All or None of the above.

The truth is, there is no good answer. Each SID child is unique in his or her own way and each SID episode plays out differently. As the parent of a SID child, you can stick to a rigid routine and live your life quite comfortably (in a plastic bubble), but you can't control the weather and sooner or later, no matter how hard you try, the bubble will burst. Here's what I do when that happens:

• Give your child a choice, whenever possible, but limit the options. Preferably no more than 2. Tell her she has to wear a coat, but let her choose which one and, if the one she wants is in the laundry, pull it back out and wash it later.
• Give your child a reason, if you can't give him a choice. Tell your son he can wear his crocks to the playground, but he has to wear his tennis shoes to school.
• When you find a clothing favorite, buy in multiples while you still can. This may mean paying full price, rather than waiting until the right pants go on sale. It's still cheaper than a closet full of clothes your daughter never wears. It also helps to leave the tags on all clothing and keep your receipts. Most stores will take clothes back and give you a refund or store credit.
• When all else fails and you're pulling your hair out, give yourself a time-out. Lock yourself in your room with your favorite beverage, food and book/TV show (or in my case all of the above, plus my Blackberry and laptop). If you can't get away in your own house, then go out for awhile. Go for a walk, go for a drive, visit a friend or go hang out at Starbucks. And, finally, if you take your cell phone with you, make sure you have caller ID. If your husband calls, don't answer the phone. Let him pull his hair out for an hour or two.

Stay tuned for more survival tips and remember this: If you leave Dad in charge you will most likely return to a dysfunctional house (chances are he didn't pick up the mess, feed the kids or put them to bed). If he did, he's a keeper.

Nianya