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October 13, 2010

No Pain No Gain


We're now in Week 6 of Financial Peace University and are struggling to get through our first full month on a "count every penny" budget. It's not easy, especially, when we've gone through most of our food and gas budget only half way through the month.

Why?

Well, we've got an almost 15yo who plays soccer 4-5 days a week at fields that are anywhere from 20-50 miles from our home each way. We also have an 8yo on the GFCF diet, who refuses to eat "rice and beans" because of sensory issues.

Oh and did I mention the cost of feeding a teenager, who plays sports and exercises at the gym and on the track during all of her other free time. It's like feeding a football player. I make enough rice and beans for 8 and we rarely have leftovers.

So for the first time in my life, I truly understanding the meaning of NO PAIN NO GAIN!

Our daughter, Jessie, who is autistic and has a major speech deficit, is frustrated, because she has to work twice as hard as everyone else and, as a 9th grader, she can't even begin to see the light at the end of the tunnel - a soccer scholarship.

Our son, Taz, who is also autistic, is frustrated, because he's lucky if he gets one day a week when we dedicate time to him and he's lost his usual pursuit - Michael's craft making - due to the lack of creative funds in our budget.

And most of all, we're frustrated! Budgeting every penny BITES!

And yet. . .

We can't quit!

We couldn't quit when God gave us two special needs children, we couldn't quit when we found out their infant health issues were nothing compared to dealing with autism and we can't quit now.

We can only continue to take Baby Steps forward as Dave Ramsey calls them, so that some day we can Live Like No One Else.

You'd think we would be used to that by now, since parents of autistic children have to Live Like No One Else, whether they want to or not.

So it's time to suck it up and remember Erma Bombeck's poem "The Special Mother."

Finally He passes a name to an angel and smiles, "Give her a handicapped child . . . I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side. . .


Nianya

P.S. Taz is learning to adapt. He's making his own creations from plain copy paper, markers and Dollar Store paints and he's very proud of his little pumpkin, which he bought with his chore money.

September 16, 2010

Dave Ramsey's Financial Peace University and Parenting Special Needs Children



My husband and I are parents of two children on the autism spectrum. We are in week three of Financial Peace, but we have been following many of Dave's guidelines for the past 3 years, since the recession cut our income considerably.


I decided last night, in class, that I would blog about Dave Ramsey and special needs parenting for the duration of this class, because the class does not address this topic and how to help parents who face such extraordinary expenses.


It's easy to say have a 3-6 month emergency fund, but it's almost impossible to predict some medical expenses, especially when one child has had 6 surgeries in 8 years.


We have good insurance and we set aside the maximum allowed for extra child care and out of pocket medical expenses, but it's never enough. We eat rice and beans, we don't eat out, we shop only at wholesale stores, even for milk and eggs, we have no car debt, we own no big screen or HD TVs and we don't take vacations.


We both work full time and can’t take on second or third jobs when we have therapies to go to.


This pretty much sums up our lives in a nut shell.


Don't get me wrong though, we a very blessed in many ways. We belong to a great church, both kids attend great private schools on the Georgia Special Needs Scholarship, we spend more quality time together during day trips and staycations and we are not deeply in debt, because we cut our expenses to the bone when we realized we had to to survive in the current economy.


I also have fun hunting for bargains and stocking up the pantry when I find a really good deal on staple items. We love going to the Dollar Store and finding new items each visit and we love being able to pick up good quality designer clothes at Sam's Club and Costco for a fraction of the price.


It's not enough though. We found that all of our cost saving practices were not enough to keep us out of emergency debt. Thus my top five reasons for needed Financial Peace University:


  • 5 - You know you need Financial Peace when your health care reimbursement account runs out and you haven't set aside enough money to cover $300 per month in medication and medial copays for the remainder of the year.
  • 4 - You know you need Financial Peace when you have to put new sets of tires on both your paid-for cars at least 10K miles before you should have needed them only because you forgot to keep your tires rotated and your cars in alignment.
  • 3 - You know you need Financial Peace when your husband fractures his shoulder from falling off a ladder while cutting the tall bushes himself, rather than paying a professional, who would also have pressure-washed the house and cleaned the gutters all for the same low price. . .especially when the professional fees would have been less than the medical copays for the broken shoulder.
  • 2 - You know you need Financial Peace when you're so stressed out and tired that you file an extension on your taxes, even though the government owes you money back.
  • 1 - You know you need Financial Peace when your washing machine dies and you're walking around Sam's Club looking for a $400+ item to buy in addition to the $260 washer, because you have to buy at least one item costing at least $400 in order to get the 18 months same as cash deal on both.
Yup, this sums up our life in a nut shell.

Nianya

P.S. If my child can fight this hard to get a soccer scholarship (see photo at top), I can fight even harder for financial independence.

August 12, 2010

Nianya's Law for Special Needs Parents: If anything can go wrong, it will, at the worst possible time. . .


I've written about this law in the past and it bares repeating on a regular basis. This week has been a perfect example.

  • First week at a new school for 8yo ASD Taz;
  • First week with both kids home after Taz returned from his summer with Grandma, SIL and cousin;
  • Bad week at work for me with two many necessary people out;
  • Cast on my right arm;
  • Major computer failure
I thought I hit the limit of my tolerance on Tuesday night after a difficult day and night dealing with two especially needy special needs children. Then again, I should know by now that especially needy applies 24/7 in our house, so I should be totally up with that by now.

Apparently not. . .

Nothing like going upstairs with a headache after a very LONG and HOT day, with the full intention of getting on Twitter and asking when I get a turn to whine, only to find out that my computer is dead and I can't even get online, much less tweet about my trials and tribulations.

It was one of those situations when you either laugh or cry, unless, like me, you're too tired to do either.

By the time I set up my old back-up computer and got back online, I realized the message God was sending me. It was basically the special needs parenting version of "Don't sweat the small stuff."

In other words, dealing with my special needs kids on days like this should be no big deal. After all we've had much worse days. . .surgeries postponed due to asthma, croup and pneumonia. . .emergency hospitalization for youngest child, the day after I had oral surgery. . .flat tire on the way to the ER at 1 a.m.

What could be worse?

Obviously losing 6 mos. worth of files that were not backed-up, even though I have a Tera-drive connected to my laptop.

Yup, that's worse!

So after a night of practically no sleep, because I was just plain too lazy to remember to back-up my files, I thanked God for reminding me not to sweat the small stuff.

And, sure enough, my prayers were answered. . .my song came on the radio on the way downtown to get an emergency back-up laptop. And when my song comes on the radio, it always means something is going to be alright.

And it was. . .

Turns out only the laptop power cord failed. . .and the first thing I did when I got my laptop back up and running was back-up all my files.

Note to self: Never sweat the small stuff, because God never gives us more than we can handle and even at the worst of times, he's there with us. And, of course, I have added a recurring reminder to my Google calendar. . .back-up computer at least every two weeks.

Nianya

God will never take us through a time of testing that is too tough for us to deal with. No matter how difficult your trials, you can bank on His promise. No trial is too great for us with the power of God. He will give us a way to endure it, to resist it, or to get through it. Right from the Heart Ministries

June 4, 2010

Summer in Chattanooga - the Tennessee Aquarium

Atlanta area families can enjoy a fun day in Chattanooga this summer for less than a 2-hour drive. Visitors can enjoy Lookout Mountain, Ruby Falls, a thundering 145-foot waterfall located deep within Lookout Mountain, the Chattanooga Market, which opens weekly on Saturdays from June through September and features live musical entertainment, fresh produce, herbs and cut flowers, and last, but definitely not least, the Tennessee Aquarium, located on the banks of the Tennessee River.

The aquarium opened in May 1992, with a freshwater and saltwater aquarium building known as River Journey. The aquarium opened its second building, the Ocean Journey, in 2005 to stay on a competitive level with the then-planned Georgia Aquarium in Atlanta.

The aquarium is home to more than 10,000 living animals and holds more than a million gallons of water. It is also the highest rated aquarium in the USA and one of the country's top 10 tourist attractions for overall guest satisfaction. And, the aquarium has a 6-story IMAX screen - the only one big enough to show a life-sized blue whale as big as a school bus.

Most importantly, the aquarium and it's surrounding shops and outdoor areas along the river are a great place for families with special needs children to visit.

Membership for a family of 2 adults and all children or grandchildren is only $115, $75 of which is tax deductible. There are separate member entrances to the River and Ocean Journey buildings and members receive discounts in the gift shops and on Imax 3D Theater Tickets.

Membership also gives special needs families a great deal of flexibility. If your child can only visit a few exhibits, you can always come back again and see more.

Aquariums in general can provide a wonderful calming experience for autistic children, if parents visit during less crowded hours, let their child lead the way toward the exhibits that he/she finds interesting and let their child decide when he/she has had enough.

At the Tennessee Aquarium families can see most of the exhibits in the two buildings in about 2 hours, if just walking through, and kids can take a break and enjoy fun open play in the outdoor stream and fountains that snake around the two aquarium buildings. While the kids play outside, parents can enjoy food, snacks and beverages from the various surrounding shops and vendors.

Two words of advice, though, bring a change of clothes or have your child wear a swimsuit underneath. If they enjoy playing in water, and most do, whether special needs or not, they will get wet. And, bring lots of quarters, because there are a number of parking meters around the aquarium, which will get you 2 hrs of time for only a couple of dollars vs. the pay for the day parking lots at $9 to $10 each.

Links:

More Tennessee Aquarium Photos

Aquariums may help autistic children

More about Summer in Chattanooga

Good Field Trips for Autistic Children

May 24, 2010

A great day in Atlanta for Autism Speaks Georgia


Today the annual fundraising campaign for Walk Now for Autism Speaks Georgia culminated in the 2010 Walk at Atlantic Station.

Walk Now for Autism Speaks is the signature fundraising event, which brings together hundreds of thousands of participants annually across the United States and Canada with a common goal of supporting Autism Speaks.

This year the combined Georgia teams raised over $516,000 and hundreds of adults and children poured into Atlantic Station this morning to take part in the annual walk.

The Atlantic Station headquarters hosted numerous tents and booths filled with sponsors, kid friendly activities and information on resources and therapies for autistic children, including:

  • Camp Dream, a barrier-free recreational camp for Georgians with disabilities, which was created through a partnership with the Roosevelt Warm Springs Institute for Rehabilitation and is located just 80 minutes southwest of Atlanta.
  • Big Thinkers Science Exploration, which offers science shows, after school programs, summer camps and birthday parties. Today's hands-on slime-making experiment was a huge hit.
  • Sensations - Therafun, a multi-sensory activity center in Atlanta, featuring a climbing wall, zip line, mini trampolines, monkey bars, swinging rings, ball pits, exercise mats and more, as well as a large art room for painting, drawing and crafts.
  • Driving Magic Inc., a non-profit in Duluth, GA, which provides therapeutic and recreational activities for people with disabilities and which focuses on carriage driving, horsemanship programs and community outreach.
  • The Adaptive Learning Center, an inclusive preschool program for special needs children.

The festivities began at 8 a.m. this morning, giving walkers plenty of time to enjoy all the activities before embarking on the 2.2 mile walk around Atlantic Station. After the walk, many of the participants enjoyed lunch at the various Atlantic Station restaurants, including the Fox Sports Grill, featuring delicious turkey burgers, blackened children sandwiches and barbequed chicken nachos.

All in all, it was a beautiful day in Atlanta and a great day for Autism Speaks Georgia.


March 31, 2010

Introspection on the path of autism. . .


This time every year, around the end of March and Easter time, I find myself getting very introspective.

I look back on the last eight years or so, think how far I have come in so many ways and wonder how I ever made it to where I am now.

Eight years ago today, on Easter Sunday, I went into labor, not for the first time, with my second child. I joking thought he might be born on April fools. He wasn't thank goodness, since he was still 6 weeks early and had been trying to make his appearance into the world for several weeks at that point.

In fact, Taz, was born just 8 days later at 35 weeks with multiple health problems, which I could never have predicted when I tried so hard for so many years to have a second child.

We were determined to give our 6-year-old, Jessie, a sibling without any idea how much our lives would change over the next few years.

When Taz was born, we barely knew what autism was.

Two years later we learned more than we ever wanted to know about autism, when Jessie's therapist went out on a limb and suggested the diagnosis to us.

We were totally floored when the therapist showed us a list of characteristics of autistic children and, once we absorbed the possibility, so many aspects of Jessie's life, which we never understood, but simply accepted, started to fit together into a puzzle whose shape, while different from the "norm" is all the more beautiful, because it is unique.

Thus, began our lives on the path of autism.

The path is winding, often dark and frightening and seemingly never-ending.

Even worse, when our second child, Taz, started exhibiting signs of autism not long after Jessie's diagnosis, we were suddenly faced with the added stress of following two very different paths at the same time.

Every autistic child is unique in his or her own way and when you parent more than one child on the spectrum, you will find that each child's path diverges at points from those of his/her siblings and peers.

I have noticed frequently over the past 5 years or so, that our children's paths cross at points, run parallel at others and often shoot off in completely different directions, usually at the worst possible time.

I've said this before and I'll say it again. . .It takes more than a village to raise an autistic child.

It takes very supportive parents, along with a whole network of doctors, therapists, teachers and understanding friends to guide each child along his/her own unique path.

Today, eight years later, I look back along the winding/divergent paths of my two children and I am utterly in awe of how far we have all come.

Last night at the soccer field, Jessie, my formerly non-verbal child, was standing three feet away from her team while they huddled. Two years ago she would have been pacing from across the field.

And, Taz, my wild child, spent a good 30 minutes engrossed in yet another 4-leaf clover search. He always finds one, no matter how long it takes, because he's not just lucky, he's autistic. He may hyper-stim at the drop of a hat, but when he focuses on a project he's unstoppable.

In eight more years, I predict that Jessie will be in college on a soccer scholarship and Taz will have a winning entry in the National Science Fair.

The path of autism may be winding and never-ending, but the possibilities along the way are infinite.

Nianya

P.S. The attached picture is a t-shirt design which is available for purchase through Cafe Press with a portion of the proceeds going to Autism Speaks. Autism Awareness T-Shirts

February 12, 2010

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

January 31, 2010

Another year, another round of holidays and birthdays and God only knows what else. . .


A twitter friend, who read my blog today, found two of my articles when she googled "Valentine's Day for Autistic Teens." Her search pulled up two of my blog entries: Both my recent article "Ignorance is Not Bliss," about raising an autistic teenager and an article I wrote last February 13 titled "Valentine's Day is just another day in Holland for a special needs mom."

I went back and reread last February's article and could not stop laughing. I wrote that article while sitting in an all-day Continuing Education Seminar, which fell right between a week of pneumonia for the then 6-year-old Tazmanian Devil and his fifth surgery in four years.

Such is my life as a special needs mother.

While rereading the article, I suddenly remember that next Wednesday is my mother's 75th birthday and I have yet to buy a card or a present, much less mail one. This would be the same mother, who informed me, oh so nonchalantly, on Christmas Day that she's been diagnosed with early Alzheimer's.

The same woman, who has always been way better at remembering birthdays than I am.

Seriously though, it is really bad form to miss your mother's 75th birthday, especially when every birthday has suddenly become quite precious and you live hundreds of miles apart.

I would like to say that I have an excuse. After all, I am a special needs mom to two children on the autism spectrum. I'm struggling to pay an ever increasing budget of medical co-pays, social skills therapy and private school fees, which are not covered by me daughter's special needs scholarship. And, I am doing so on a seemingly ever decreasing amount of household income, because the economy still bites after two long years.

But I can't. . .

Justify an excuse for forgetting such an important day. Not when I keep a detailed calendar on both my computer, where I spend almost all of my waking hours, and my Blackberry, which I sleep with.

I can, however, say. . .

Thank God for computers, the Internet and Amazon Prime's free 2-day delivery.

Two gifts are now on their way to grandma for delivery on her birthday with special birthday wishes from me, Dh and her only two grand kids: 7yo Taz and 14yo Jessie.

Once again God is watching out for me and once again I remember that I am never walking alone.

Nianya

P.S. You may ask why I pay $79 per year for the privilege of free 2-day shipping. HELLO, I spend hundreds of dollars each year on Amazon Prime eligible products, usually at deep discounts, often in bulk, without paying for tax or shipping, and without having to change out of my jammies. UPS practically lives at my front door.

P.P.S Grandma's a huge Bama fan and luckily Amazon has a large selection of Crimson Tide products for sale with free Amazon Prime shipping. ROLL TIDE ROLL