Nianya's Search Engine

Custom Search

Nianya's Twitter Updates

Photo of the Day

Photo of the Day
Anything is Possible if you Dare to Dream

October 31, 2009

Autism & Halloween


Because my 7.5-year-old son is on the autism spectrum and the gluten-free casein-free diet holidays are always difficult. It's very hard to schedule outings with family and friends, because we never now when Taz will hyper-stim or worse: meltdown.

I have to say that this year he did very well. We attended 2 Halloween Parties:

Trunk or Treating at our Church: This year we opted not to decorate the car and stay the whole time, because last year Taz lost it after an hour or so.

Georgia A-Scary-Um: We checked Taz out of school at noon and met up with another family to ride downtown together after grabbing a quick lunch at McDonald's. Taz was fed and calm for the most part. Of course the aquarium itself is very overstimulating, but we let the kids chase around and collect candy for an hour or so and left before things got out of hand.

Tonight, Taz dressed back up in his astronaut costume and spent about 30 minutes walking around the immediate neighborhood with dh; not too far or for too long.

Afterwards, he happily sorted out the candy, which he can eat (GFCF candy), and distributed the rest to myself, Dh and 13yo Jessie, who opted out this year. Then Taz proceeded to answer the door for us and distribute candy at regular intervals to our local trick-or-treaters. That's Taz's job and has been for the past 3 years.

I have to say I'm very proud of him. No tears, except for his mini-panic that I did not rush downstairs to answer the door when dh took him out. He was very afraid that someone would miss their candy, while he was making the rounds.

Happy Halloween
Nianya

October 18, 2009

Parenting an Autistic Teen: Ignorance is Not Bliss


As the parent of a teenager, I struggle with issues related to the current economy, shifting moral values and what I perceive to be an apparent loss of hearth and home.

Kids these days no longer come to their parents for answers, they text their friends, Google it and put it on Facebook /My Space. They are exposed to a constant barrage of violence, sex, drugs and dare I say "Rock n Roll" on television and the internet, in video games and often at school.

Try as we might, it is impossible in today's society to completely protect our children from all of this. So we make choices:
  • 1. Which TV programs should our children watch, what games should we let them play and which movies should they see?
  • 2. How much do we restrict our teenager's phone and internet use?
  • 3. Where do we draw the line on our teenager's friendships?
This list could go on and on. . .

Now add in another factor:

AUTISM

That puts a wholly different perspective into parenting a teenager.

As the parent of two autistic children, I have been their shield and their sword since birth. I protect them from outside influences, which affect their routines and trigger their sensory issues, I fight for services at school, I pay for necessary and expensive medications and therapy and I have totally changed my own life style to accommodate their needs.


The problem is that I don't know how far to go with all of this.

At some point, my autistic teenager is going to have to face the world without my sword and my shield. She's almost 14. That's a far cry from being an adult, but I keep asking myself what I can do now to help her transition into an independent person by the time she goes to college.

How far do I push her and when do I let her fail so that she can learn how to pick up her own pieces?

My daughter has difficulty reading social clues and she takes everything at face value. There is only black and white in her world, no shades of gray.

In other words, she's "clueless," which has its advantages for now.

Jessie doesn't pick up on spoken
innuendos and teen body language. If someone said "He's Hot," she might think the guy had a fever.

Really, I'm serious. . .

If I mention boys to Jessie, she adamantly insists that she's never dating, never getting married and never having kids. She simply cannot envision a future in which she will change her mind on these issues.

As an autistic teen Jessie's physical development is on par with her age, but light years ahead of her social development.

Believe me when I say that guys around her see it, even if she doesn't.

In the back of my mind I keep thinking about the movie Harper Valley PTA, in which the somewhat mousy/shy teenager gets her braces off, gets a new hairstyle and suddenly everyone sees her as "grown up."

Jessie's almost there. Her early teen acne is clearing up, she's getting her braces off in a few months and she's tall and very athletic for her age.

And she's totally clueless and totally dependent on us to make the right choices for her.

I literally have to force Jessie to participate in activities outside our home. She loves soccer, but hates activities with her teammates outside of regular practice and games. The same applies to school and church. Daily and weekly routines such as Sunday school and Wednesday night youth activities are fine, but field trips and special youth activities are outside Jessie's routine.

This weekend I practically had to force Jessie to pack her bags for the youth lock-in.

I will say that I was very proud of her when she explained why she did not want to go: "I feel alone there," she said.

I could have cried, because I know exactly how she feels, and her comments made me question whether I was making the right choice for her.

I did not back down, however, despite the fact that dh kept telling me not to force Jessie to do something she does not want to do.

This was too important and it was a great opportunity for Jessie to try to socialize in a very protective atmosphere. We have a wonderful church and great youth group and I know Jessie is in good hands when she's there.

And yes, in the end, Jessie had a really good time. She made a couple of friends and for the third year in a row, she stayed all night, after swearing that she would not.

Still, church activities are not enough.

At some point, Jessie is going to have to learn to deal with society outside of the protections of home and church. She should be dealing with these issues at school, but we moved her to a small private school this fall, which was the best available option for her learning disabilities.

Our goal with school is to make sure that Jessie catches up with her peers so that she can go to college someday, even if she needs more time to get there.

The drawback is that Jessie's school is a small protected atmosphere where learning is key, everyone wears the same uniform and there is absolutely no exposure to the bad aspects of today's society.

Ignorance is not bliss, it's dangerous, and I am so afraid that Jessie will be unprepared for life in college and beyond.

So where do I go from here? How far do I push my autistic teen? How much do I continue to limit her exposure to outside influences?

In other words, how do I prepare Jessie for life in a non-autistic world?

I wish I had answers to these questions, but I don't, because when it comes to parenting an autistic teen, I have only just begun.

I post about my past experiences with autism to help other parents while they are going through the same issues that I have already faced.

This is one of the few times that I have written about the issues I am currently facing, to which I don't yet have any answers.

And I feel like I'm back to walking on egg shells.

My life as an autistic parent often results in taking one baby step forward and two big steps back.

I'm afraid that, if I make the wrong decision with regard to my autistic teen, she will regress so far socially that I cannot bring her back.

But, I can't be Jessie's shield and sword forever. I have to find a way to push Jessie out into the "real" world a little at a time so that she can learn to stand and fall on her own.

Nianya

P.S. These are some articles/thoughts I found on the subject of Parenting Autistic Teens.

Autistic Teens and Independence
Discussions on Unique Parenting Challenges
The Asperger's Teen

October 9, 2009

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.

October 4, 2009

Autism Learning Felt


Today I wrote my first blog entry for Autism Learning Felt, another great site, which shares ideas about product that may be beneficial for autistic adults and children.

Today's Blog: Sensory Overload

Nianya

P.S. Photo of Taz at today's end of season Atlanta Braves Game after he told me a dozen times that I wasn't doing the "Braves Chop" right.

September 12, 2009


















The Jessinator and the Allee Gater. . .these girls rock.
Posted by Picasa

September 11, 2009

Jessie & Taz's World. . .

I have been struggling a lot lately with what I want, what I have and what I can achieve in this world.

Not the "World" literally or even generally, but My World. . .Jessie and Taz's world.

We seem to have found some stability for both children in school at least. 13yo ASD Jessie is in private school on the state special needs scholarship. 7yo ASD Taz is in public school and we have finally started the full IEP process, but have to hold our breath for 60 days to see if he gets all the services he needs.

The economy is tanking and we have very little discretionary money, which is a general problem in the World today, but it can be a catastrophe to a special needs parent. We've cut our expenses to the bone, we eat-in, instead of eating out, we buy on sale/in bulk and we don't go on vacations, to the movies or to the mall.

We've also had to make some very tough choices about which of the kids medications are absolutely necessary and whether we could substitute generics for some brand names that work better with less side effects.

And, just when I think we can manage with the cuts we've made, new expenses crop up. Jessie has to have after school tutoring, because she's so far behind after attending a Charter school for three years that did not comply with her IEP.

We also added additional private soccer coaching, because the recent merger of our soccer club with two other clubs has created chaos and almost left us without a team for her to play on this season.

I''m really hoping that the team of generally nice girls that we finally scraped together will be competitive once they get up to speed and, if they can set aside petty rivals that are causing dissension in the ranks.

Jessie is oblivious to all of this. She came out of a weekend of tournament games that some parents would call humiliating and posted on her Facebook page that she had a good time with the team.

I nearly cried, because there was a time, not so long ago, when Jessie could not communicate with her teammates, schoolmates or even some close friends. Now she's posting on Facebook that her team rocks and they're gonna "Kick Butt."

In a perfect world this would be enough to keep me and Jessie very happy. The problem is Jessie is a soccer fanatic, this is her last year before high school soccer and she wants a college soccer scholarship. To get there, she has to train as hard as possible and at the highest level she is capable of. But, at the same time, we can't forget that she is finally socializing with her teammates.

So we compromise. We give our current team our full support and find the money for extra training.

Which brings me back to the subject of Taz, a very bright boy, who cannot read. The boy can create his own science experiments with the rights tools and ingredients and he's a talented artist.

He would really benefit from some enrichment classes in Art and Science, but we simply cannot afford them. We've also cut back severely on his arts and crafts supplies, which keep him busy while we focus on Jessie's soccer, social skills classes and church youth activities.

Someone told me this summer that I focus too much on Taz when I blog, probably because he gets sick a lot, is on a very limited Gluten Free Casein Free diet and has many sensory issues.

In reality, I go back and forth between two special needs children, trying to keep up with both of their issues and needs. I don't know how parents with more special needs children survive. It's hard even when you have only one and it can be almost impossible in the current economy, because of the added stress for many families, like ours, who are living on less income (dh is self employed and I work for the insurance).

I often ask my readers to walk a block or even 100 feet in my shoes, but I'm not going to do that today. I'm not even asking for support, since I've learned that our family has to count on themselves and do what's right for us.

However, I will ask that you think before you make our lives harder. Be encouraging and positive when you see us and our children. . .as my grandmother or some wise woman always said "If you haven't got something nice to say, don't say anything."

I love that Jessie's posting on Facebook, but I hate the fact that Facebook allows her to see the comments from friends of her friends, even those that may be negative or hurtful.

Have a blessed day on this 8th anniversary of 9/11

Nianya

August 22, 2009

PBS Kids Dinosaur Train Preview Party


Another lazy summer Saturday. . .

NOT

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

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

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

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

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

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

HUH????

Well ummmm. . .

I'm a mom and I blog. . .

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

Apparently not, one of the beautiful people!

And little did they know, they were SOOOOO right.

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

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

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

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

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

Nianya

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

July 31, 2009

Tazmania vs the Jessinator. . .


Or more accurately Taz and Jessie, my two wonderful special needs children. Jessie is 13.5 years old, autistic and a fab soccer player. We call her Jessie James a/k/a the Jessinator, because she'll rob you blind on the soccer field.

Taz is 7 years old, severely ADHD, ASD, SID, Asthmatic, GFCF, you name it. We call him the Tazmanian Devil, because he's like a mini tornado that spins, stops and grins, and spins some more, wreaking destruction everywhere he goes.

Gotta love em.

Taz has been visiting his cousin in Charleston for most of the summer and won't come home until tomorrow. Meanwhile, dh, Jessie and I have been enjoying our staycation. We have spent our summer touring the local sites in and around HotLanta. There's a lot to do in this town and in Northern Georgia.

It goes without saying that when Taz goes with us, he rules the roost. No matter how hard we try, we spend most of our time chasing the little devil around.

With Jessie we can take our time. View the sites, have a leisurely lunch/dinner and relax.

I have certainly enjoyed our quiet summer, but I can't wait to get my Taz back tomorrow. Jessie's not so sure she wants to give up being an only child again, but I know that deep down she misses him. We all do.

Nianya

July 30, 2009

Tubing in Helen was Good for my Soul. . .


Dh, Jessie and I had a blast yesterday tubing with our church youth in Helen GA. It's was 13-year-old Jessie's first time. Dh and I hadn't tubed since we were her age.

We spent the last three rain-less, hot, muggy weeks looking forward to a lazy trip done the river only to get drenched in the pouring rain for the first hour of the trip.

Still, I never lost my humour. I was determined to get some photos and video of the kids on the river and even went out to a couple of stores the night before to see if I could find a waterproof disposable camera. NOT

I took a chance with one of my small Kodak cameras, which takes good still shots and video, hung it around my neck in a water-resistant camera case and covered the lot with Ziploc baggies.

My red-neck version of a water-proof camera actually worked pretty well. I managed to keep it high enough in the air with one hand, while I braved the rapids by holding onto my tube with the other. I got a few shots and one short video in between the bouts of pouring rain.

Dh and I lost Jessie earlier on. She floated way ahead of us with the more ambitious youth. I even lost Dh about half way through, because I kept getting stuck on rocks in the shallow areas, but I found a real sense of peace, while drifting slowly down the river, in between the raging rapids.

And, of course, the sun came out and dried up all the rain, just after we boarded the tubing company's bus to go back to our vans and cars.

We had a great day with a group of really great kids. I have never been involved with a friendlier group of teens at church or anywhere else for that matter. These kids are fun, have great manners and shine with the spirit of God.

And, best of all, I asked Jessie on the way back if she talked with the kids while on the river and she said YES. That means everything to the mother of an autistic teen and it shows me that the kids reached out to her and made her feel welcome.

Nianya

July 25, 2009

Staycationing at Dixieland Fun Park

















Last Saturday we hiked 3.5 miles at Sweetwater Creek park and today we were supposed to hike again at either Boundary Waters or the Clinton Nature Preserve.

We decided to be spontaneous and go to nearby Dixieland Fun Park instead. Good choice.

With BOGO coupons we only spent $38 for all of us to get in, which was a really great deal for almost 4 hours of fun in the sun.

Of course I forgot to charge the battery to my Canon EOS, so we had to use Jessie's cell to take a few photos, but I was actually relieved not to have to carry my big camera w/ fancy flash kit all around the park.

The rides are nice, but we had the most fun playing two grueling rounds of goofy golf. Jessie was up for a third, but Dh and I called it quits after the second round. Too hot and too tired by that point.

And, of course, on the way home we stopped at the Fayetteville BigLots where we found great deals on snacks for school, which starts again in less than 10 days. It was a bonus day at BigLots: $300 worth of snacks for about $100. Too bad I wasn't there last Sunday when we had the bi-annual extra 20% off your entire purchase coupon.

C'est la vie!

Nianya

P.S. If you go to Dixieland take bottled water, which you can refill (we did) and wear closed toe shoes (I did not), because some of the rides require them.

June 18, 2009

Amelia Island, Florida


I'm currently in Florida working at the Georgia Bar Meeting. This year's meeting is located at the Amelia Island Plantation.

Yesterday we dragged 7yo Taz and 13yo Jessie out of bed at the crack of dawn, loaded the car to the rafters and drove to the outskirts of Savannah for the respite care trade off at the Georgia Welcome Center. Grandma and Auntie, from Charleston, are keeping Jessie until Sunday and Taz for a whole month.

Both kids are on the autism spectrum and we haven't had a break since last December. It's tough being a special needs parent and even tougher holding down full time jobs while doing so.

I felt like a free bird once we dropped of the kids and didn't even blink an eye when we got stuck in horrible construction traffic about 30 minutes later. I just enjoyed the sounds of silence or rather the sounds of our Sirius satellite radio with unlimited kid interruptions.

My stress level started dropping the minute we got back on the highway after turning the kids over to the relatives, it dropped even lower after a relaxing dinner and plummeted to near zero during a sunset walk on the beach.

And, I'm still relaxed, even though I got up at 0530 to snag sunrise beach photos, rush over to the conference center to set up electronics at 0730 and ran around meeting people until 0900 when my current seminar started.

Hopefully the sun will be out by noon so I can snag some great island photos during lunch.

Nianya

June 13, 2009

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.

June 8, 2009

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.

June 6, 2009

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

May 24, 2009

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.

March 13, 2009

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.

March 12, 2009

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

March 11, 2009

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.


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

March 1, 2009

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

February 21, 2009

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

February 20, 2009

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

February 19, 2009

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

February 17, 2009

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

February 13, 2009

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

February 9, 2009

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

February 4, 2009

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."


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

January 27, 2009

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