I can't win for losing. . .

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

So this year, I planned ahead.

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

If you can name it, I track it!

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

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

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

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

I have become SUPERMOM.

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

. . .

NOT!!!!!!!!

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

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

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

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

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

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

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

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

Again. . .

NOT!

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

exactly 5 minutes before the party started!

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

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

So what about Taz you ask?

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

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

Nianya's Law. . .AGAIN!

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

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

It never snows here.

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

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

Again, NOT!

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

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

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

Um, NOT!

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

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

Nianya

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

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

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

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.

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.

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

Mom, where's the dining room. . .

That's what my 6.5-year-old son asked me today when he brought me a handmade present and asked me where to put it. I laughed and told him it's the room with the Christmas tree.

I had to laugh, because we have not used the dining room, as such, since long before he was born. Then I started thinking about all the changes we have made in our house in the past 10 years.

We started out with the typical house format: an front entry-way with a living room on one side, and a dining room on the other. A downstairs bedroom and bath, a 2-story great room and a kitchen. The second floor had three bedrooms, two baths and the traditional master suite, plus a tiny home office over the garage.

That was back when we had only one child, a toddler, and autism was not a word in our vocabulary. We used the dining room a couple of times for extended family dinners and birthday parties, we turned the living room into a music room to house my antique grand piano and turned the downstairs bedroom into a living room. In other words we had way more space than we needed.

Over the course of the next 4-5 years things rapidly changed. I started telecommuting 3-4 days per week, my daughter was diagnosed as autistic, rather than simply ADHD, and we added a son to our household.

We turned one of our upstairs guestrooms into a nursery, we turned our living room/TV room into a playroom, complete with rubber mats for our son to play on, because he had severe reflux, and we expanded our upstairs office into the dressing room to accommodate multiple computers, fax machines, printers, scanners and several shelving units overflowing with office supplies.

We stopped any attempt to have meals together, because our son was allergic to milk, wheat and everything else on the planet. We segregated our kitchen and pantry into GFCF safe zones, labeled everything and expanded our food storage into the garage with shelves for dried and canned foods and an extra freezer to store our son's GFCF foods, which we had to purchase in bulk from health food stores and websites.

We never used our dining room for family gatherings, because our son didn't understand why he couldn't eat the same foods as the rest of us. We fed him separately and ate our own dinners, while he was watching TV in another room or after he went to bed.

A couple of years later, we started allowing our daughter to sleep downstairs in the TV room on the weekends as a reward for good behavior during the week. At the age of 8, our daughter fit perfectly on a kids' pull-out couch, which functioned as extra seating during the day. We moved our then-toddler son's expanding collection of toys and puzzles to the great room and gave him the kitchen desk, complete with TV/VCR and all of his favorite Baby Einstein videos to watch while he ate.

This worked great for a couple of years. We even got to the point where we had an occasional meal "together," with three of us at the kitchen table and our son happily ensconced at his desk with his GFCF food and videos.

Then the kids started growing up. My daughter outgrew the pull-out couch and started sleeping on a blow-up mattress. The TV room became her extra bedroom/locker room complete with her favorite character accessories (Pokemon, Star Wars, Sponge Bob Square Pants and most recently Indiana Jones) all lined up in rows on the tables, couches and floor etc. . . in classic autistic fashion.

My son outgrew the desk and needed space for all the crafts and art supplies we bought to entertain his mad-scientist/craft-boy/severely ADHD brain. He took over the great room, kitchen floor and 1/3 of the garage. We also gave up two of the closets in our master suite to house his craft supplies, which we buy in bulk at the dollar store, Big Lots and Michaels.

For the past two years we have been bursting at the seams and were planning to finish our basement to give the kids and us more space.

Fast forward to the present and things have changed drastically. The economy tanked and ended any dream we had of finishing our basement in the next 10 years, I added photography services to my weekend/nighttime home printing business, which necessitated additional equipment that overflowed into our bedroom, and we had to hook up the Wii, which my daughter bought with her own money, to the little TV in her brother's bedroom, because he was the only one in the house, who had any space left to move around in.

So, two months ago, I cried uncle and decided to take back the house (i.e. rearrange it).

• We had a huge yard sale to get rid of extra toys, unused kitchen appliances and furniture;


• I moved the big TV out of the "locker room" into the great room, hooked up the Wii there and rearranged the couches to maximize the floor space;


• I used to money from the yard sale to buy a designer desk and tables from Big Lots at 75% off the original manufacturer's price and set up a stylish downstairs office with all of my printing equipment;


• I reorganized the upstairs office to maximize our room and storage space and put a combination lock on the craft closet in an attempt to keep our son out of the master suite;


• I added risers to my son's bed so that we could store all his toys underneath in movable containers, which also helps to keep him occupied in his room at night until he winds down and falls asleep; and


• I set some strict rules for both kids with regard to keeping their rooms, the great room and the kitchen in order.

It didn't take long for my daughter to get the hint that I meant business after I put a lock on the TV/Wii cabinet and started changing the combination every time she forgot the rules.

So what about the dining room you ask and why have I had a Christmas tree set up there since early October?

Long story short, I decided the turn the unused dining room into a weekend photography studio starting with a Christmas set up.

On the bright side, I have tripled my tax deductible home business space and it's a lot easier to keep the house clean. On the downside, I now need an extra freezer to store my son's food, because my husband and daughter have taken over his freezer space to store their frozen foods from Sam's Club, Costco and BJs and my son's screaming, because he's out of his favorite breads, which I buy in bulk from Kinnikinnick in Canada.

Give me a break, I hate cooking, we all eat different meals anyway and it costs more to buy the ingredients than it does to buy gourmet frozen dinners from the wholesale clubs.

Nianya

P.S. The tax deductions are about the only real benefit I get from my printing/photography business. I have a full-time day job, very little free time and a bad habit of donating my services to various night and weekend charity projects.

Angry Mom of Special Needs Children. . .

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

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

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

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

Nianya

Tazmania: the Tooth Fairy vs. Poison Control. . .

Never a dull moment in our special needs house. Each little joy is always mixed with a healthy dose of reality.

My 6.5-year-old has been waiting not so patiently for his first tooth to fall out so he could leave it for the tooth fairy. This afternoon, he came screaming up the stairs proudly holding his bloody tooth. "I bit an apple and it yanked out my tooth."

I tried to convince Taz to give me the tooth for safe-keeping but he wouldn't part with it. I was sure he'd lose it before bedtime, but he kept that tooth in his little paw until he put in under his pillow after his bath.

An so, we began the great wait for the tooth fairy, which naturally was rudely interrupted by my discovery of two Sam's Club size bottles of gummy vites, which went from more than half full each to less than a quater full in the past 2-3 days i.e. somewhere between 75 and 100 missing vitamins.

I tried to tell his Dad a couple of nights ago that those bits of colored gooey things under the kitchen desk looked suspiciously like gummy vites, not some long lost fruit snack that Taz dug out of the pantry.

Tonight he finally agreed.

When I called poison control, they calculated the potential overdose and informed me that he could very well have consumed a toxic amount of vitamin A.

Luckily for Taz, the vitamins don't contain iron, he has no classic symptoms of vitamin A poisoning and, he consumed the vitamins over a few days. So he's probably okay. They recommended no more vitamins for at least a month. More like a year, if you ask me.

Dad, was relieved to hear that we avoided another trip to the ER, then asked why those darn bottles don't have child proof caps. I calmly reminded him that Taz was the only child in pre-K, who could open all six of the supposedly child proof caps during a in-class poison control demonstration.

He also knows how to open all of our locked cabinets, even though half of them have combination locks. He watched his Dad open them once and memorized the combinations. I tried changing them. It didn't help.

And so we are back to the tooth fairy, which, as always, Taz is determined to do to the extreme. He went to bed and promptly yanked out another tooth so that he could have a two-fer tonight.

Nothing is ever simple in our house.

Nianya

The "Eyes" have it. . .

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

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

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

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

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

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

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

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

"Mommy, you bought me a MONSTER DOLL!"

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

Better a monster in the bed, then under it.

Nianya

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

To Blog or not to blog. . .

That is the question.

I started this blog with the hope of reaching out to other parents, who, like me, struggle to raise their special needs children. I tend to blog only when inspired, which usually means that someone or some corporation has ticked me off.

I have noticed that I get about 100 page hits every time I write a new blog entry. Discounting my 10 or so faithful friends and maybe 5 relatives, that means I have about 85 avid readers. I need more.

At this rate, to reach my goal of 1 million hits, I'm going to have to write nearly 1,000 more entries. So I had better get cracking.

Today's topic: $10,000 birthday parties, $25,000 bat mitzvahs and hedge fund managers, who make $1.4 million per hour spending other people's money. I must be in the wrong profession.

My son wanted to go to Chuck E. Cheese for his birthday. I wanted to arrange a zoo party where his friends and classmates could get an educational experience, while having fun at the party. I considered the following options:

• $350 and up for a Chuck E. Cheese party for 20-30 kids - where consequently my food-allergic son would have to eat his dinner in the car.
• $400 - $600 for a party at the zoo, depending on whether I ponied up for the other kids' parents to enter the zoo as well.
• $325 tax deductible donation for the Zoo Mobile to come to our son's school and give a fun and educational demonstration complete with live animals.

Guess which option I chose. The in-school party required no invitations, I did not have to worry about RSVPs, I spent less than $100 more for zoo-related crafts and goodie bags, pizza delivery and Sam's club cupcakes, and my son, who ran and hid when they brought out the corn snake, happily ate his GFCF lunch with his friends.

So what about these $10,000 birthday parties? I doubt the party pictures were any cuter than my son on video running from the snake and I could help dozens of special needs children through my ministries with that kind of money.

Most special needs parents learn very quickly to choose the least stressful and in many cases the least expensive option. I do worry about money, but I will always choose the tax deductible option, even if it means more money. The kids have fun no matter what.

Why don't these parents rent out their zoo or local aquarium and invite underprivileged or special needs children to the party. The parents get a big fat tax write-off and their children get a wonderful lesson in learning about others, while having a great time. It's no different than spending Thanksgiving at a soup kitchen, instead of sitting down to a 10-course meal at a 5-star hotel.

I'm preaching to the choir. The $10,000-party parents aren't the ones reading my blog and neither is the $3 billion per year hedge fund manager. If you are reading, please make a sizable donation to Lifeover Ministries.

As for my faithful followers, send me some inspiration. I still have 999 more blogs to write before I reach my 1 million-hit goal.

Nianya

The Americans with Disabilities Act

covers food allergies.

So why does Chuck E Cheese prohibit outside food other than cake, cupcakes and ice cream?

PROFIT: Pure and Simple!!!!

Their response to my inquiry:

"The only outside food we can allow inside is cake and ice-cream. This is a policy and there are no exceptions. Again, it is a healthy code violation to allow guests to bring in any other outside foods.

If the food allergy does not allow the guest to consume any items on our menu, we recommend the guest eat before they come to the restaurant.

Thank you, Guest Relations"

If allowing only outside foods, such as cakes and ice cream, which encourage parents to host expensive birthday parties at their facilities, isn't profit based discrimination, then I don't know what is.

They could ban all outside food and I would have no argument.

I THINK NOT: Banning cake and ice cream from their birthday parties would not be a very good profit making decision.

So I am left with a choice: feed my child before his party or host the party elsewhere.

Monkey Joes here we come!

Nianya

There is no fury like a Special Needs Mother . . .

whose child is denied access or turned away do to his/her disability.

Whether the child's disability is highly visible or not, there is nothing worse than being asked to leave a restaurant, play place or other commercial establishment, merely because they cannot accomodate your child's special needs.

For the first few years of our son's life, we avoided birthday parties and play dates, because of his food allergies. We didn't feel that it was fair to expose our son to birthday cake and pizza etc . . . when he could not eat them.

During the past two years, however, we have gradually learned that it's okay to take him out. We just bring his food with us and bring him a sweet treat in lieu of the cake.

Sometimes we get funny looks from the waiters when we order our own food and I either take his homemade food out of his bag or give him a GFCF Happy Meal (plain burger with plain apples). Once we explain his allergies, they are usually very helpful and understanding.

Today, I ran up against a brick wall. . .

a manager at Chuck-E-Cheese, who refused to allow us to bring in our son's GFCF Happy Meal, even without the bag, so that he could eat dinner with his friends during his own 6th birthday party. Never mind that we spent BIG BUCKS on tokens and food for everyone else. Our son had to leave the party and go out to our car to eat his dinner.

When I explained his allergies to the manager, he was unsympathetic and said that everyone would start claiming food allergies just so they could bring in their own food. I think not.

No one wants to be allergic to half the food on the planet.

I'm very grateful that my son was so hungry by that point that he didn't think twice about going outside to eat. Most 6-year-olds would have thrown a fit. I would like to say that next time I go there, they will be more accomodating, but it's going to be a very cold day before we go back.

Nianya

We've come a long way . . .

Several weeks ago, I was browsing the new improved health food section of our local Kroger's store, which now includes many of our favorite GFCF (gluten-free/casein-free) dry and frozen foods. Another mother overheard my comments to my husband about the relevant merits of Ian's Gluten Free French Toast sticks vs. Ian's Gluten Free Waffles and asked if we had a celiac child. No I said, just a 5-year-old picky eater with food allergies, asthma and SID (Sensory Integration Disorder) issues.

I suddenly found myself telling this women all about our favorite GFCF foods, because she mentioned that she was having trouble finding gluten-free foods for her 9-year-old, who was recently diagnosed with celiac disease.

When we started our GFCF journey more than five years ago, the new federal labeling standards were non-existant, you couldn't tell if a product contained milk, casein or whey and I constantly had to tell my husband not to buy anything for our son, unless I gave him a specific product name.

Of course that meant not grocery shopping for the GFCF kid, unless you were lucky enough to live near a health food store and even then, you couldn't always trust the store's supposedly Gluten Free products. A sales person once tried to convince me that spelt was wheat-free. When I took exception to her comment, she informed me that most wheat-allergic people are not allergic to spelt. I think I'll stick with Wikipedia's definition .

Back then, I felt like a freak in a milk & wheat world and, when I told people that my son was allergic to milk and wheat, they looked at me in horror and asked "What does he eat?"

Well, until age 16 months, he ate no solid food.

Then we discovered Kinnikinnick breads, Gluten Free Pantry mixes and Roberts Tings. A couple of years later, after bi-monthly trips to the only really good health food store within 30 miles, I discovered that we could purchase many of our favorite GFCF foods cheaper on the internet.

• Amazon sells a wide variety of GFCF and Gluten Free foods and, if you sign up for Amazon Prime, you get free 2-day shipping on eligible products. Amazon also tracks your favorites and notifies you when they are on sale or subject to a special offer.
  
• Kinnikinnick allows you to order up to $200 in foods and pay only $10 in shipping, plus they give you GFCF points toward future orders. (Kinnikinnick is now available in select grocery and health food stores. The prices are considerably higher than buying directly from the company; however, I recommend trying their products locally before you buy in bulk.)
  
• Ener-G and other GFCF sites offer sales and promotions on various GFCF products.

Buying in bulk doesn't have to be difficult. If you don't have a pantry (or your pantry is already overflowing like mine), store the non-perishible items in your garage, get an extra freezer, if needed (our's cost < $150), and invest in a food saver vacuum sealer, which keeps breads and other foods fresh in your fridge or freezer for months. This may seem overwhelming, but, if you're like me, you probably don't have the time (or in my case the talent) to cook GFCF foods from scratch. (Case in point, it took me 3 years to create an edible birthday cake.) And, many of our favorite foods come pre-packaged in small sizes for car trips, school lunches, eating out etc. . .

Word to the wise, let your child choose his/her favorites. Not everything will be a hit. I once got a great deal on gluten free apple and blueberry fruit bars from Amazon. My son (the world's pickiest eater) hated them and they stayed in the pantry for months, until my athletic tween, who will and does eat everything when she's hungry, discovered them. They are long since gone.

1. Check with your local store about return guarantees, many stores will take an opened item back if you or your child aren't satisfied.
2. Don't invest in a bread machine, mini-fryer or other small appliance for GFCF cooking, unless you will use them frequently. If you want to try a new recipe, such as a GFCF coating mix, borrow a fryer from a friend or follow the pan fried instructions. (Our deep fryer has been on the pantry shelf, since we discovered after only one week that it was more trouble than it was worth and the GFCF bread mixes we tried in our bread machine weren't as good as the store bought breads.)
3. Be on the look out for sales and manager's specials. You will save money in the long run.
4. Sign up for e-mail alerts and coupons on your favorite GFCF food sites. Many of them track your purchases and highlight your favorites when they are on sale.
5. And, last, but not least, create a GFCF safe kitchen. Set aside a counter area, cabinet or pantry shelf, use matching or easily identifiable containers for loose foods, such as chips and snacks, and label all of your child's GFCF foods. (My son has a GFCF corner and pantry shelf dedicated to his foods, all of which are labled with his name and our personal logo. That way relatives, visitors and sitters know what they can and cannot feed him.)

As I said, we've come a long way. The GFCF diet has finally come out of the dark ages and is fast becoming a main stream topic. New Federal labeling rules require foods to state in plain terms whether they contain certain allergens, such as wheat, milk, soy or peanuts, many manufacturers now state that their products are produced in plants where items containing such allergens are prepared and restaurants/fast food chains are now listing food allergen information on their website.

Stay tuned for my next post on the GFCF diet in a fast food world.

Nianya

Welcome to my World . . .

If you are a parent of a special needs child, then I'm willing to bet that you've heard some version of the poem "Welcome to Holland," which has been adapted over the years to fit many special needs children and parents. Nearly 6 years ago, I found myself on a plane to "Holland," except that it never seemed to land. I felt like we were circling Siberia.

My son was premature, had severe reflux and was allergic to "everything on the planet." He survived on specialty formula until he was 16 months old and then goat's milk, until we finally found the gluten free/casein free (GFCF) diet.

I met an angel, in the form of another special needs mother, who gave me a wealth of information on the GFCF diet, directed me to web sites where I could learn more about living with the GFCF diet in a milk, bread and potatoes world and gave me a cyber shoulder to cry on when my son passed another birthday without a cake.

Imagine spending three days with your child in the pediatric ward of your local hospital fighting croup and asthma and they have no food to feed him. They had no dye-free jello and looked at me like I was crazy for asking if they could make a scrambled egg without milk or butter.

Welcome to my planet!

I spent the first two years of my son's life in a holding pattern over "Holland" trying to find a safe place to land. Then, just when I thought it was safe to exit the plane, my then 9-year-old daughter was diagnosed with high functioning autism. In reality, she is high functioning only because we learned very early on in her life that we had to live on a very strict schedule with her or our entire world would come crashing down on us. We used to think she was a "difficult" ADHD toddler.

If I'd only known then what I know now.

Hindsight is not always the best sight, however. It turns out that we instinctively helped our daughter function on a higher level by involving her in sports (gymnastics & soccer) at a very early age to improve her coordination and by enrolling her in a Montessori pre-school and elementary where she could learn at her own pace and in her own space. To this day, after years of speech and social therapy, my now 6th grader still has trouble sitting at a desk, raising her hand and answering questions. Imagine what she would have felt like in public Kindergarten when she was practically non-verbal.

Austim used to evoke an image of a child sitting in a corner banging his head against the wall and I have a hard time explaining to people, who don't know much about autism and who don't really know my daughter, that an autistic child's behavior can have varying degrees. My daughter seems quite "normal" on the soccer field, as long as she knows the exact time and place of the game, the exact color scheme of the uniform she has to wear and whether or not both her parents will be able to attend. But, a sudden change of plans can send her into a meltdown worthy of the terrible twos. Try and explain that to spectators.

So now you have a brief introduction to "My World." We live on a different planet in our house. A planet where it's safe to be on the autism spectrum, you can always find something gluten free and casein free to eat, Mom knows how to make an "edible" GFCF birthday cake and we don't rush to the ER for a middle of the night asthma attack. Mom knows how to use a stethoscope, always has the asthma meds and nebulizer ready and knows when to say UNCLE and head for urgent care.

Our lives may be hectic, but we've long since landed in "Holland," learned the lingo and learned how to navigate the back streets.

Nianya