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Black Friday Walmart Death…Too Close for Comfort November 29, 2008

Posted by hopeauthority in Autism, Children, special needs.
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WTF?!

As I was enjoying the second day of our overnight family holiday outing at our friends’ home, we heard the terrible news about the Walmart worker who was killed by a stampede of shoppers. “Where the heck do animals like that live? “, I thought to myself. Then I realized, they were from the county next to mine!

Since I normally host Thanksgiving, I am too tired to do the Black Friday crack of dawn thing. I only did it once…the year of my firstborn’s first Christmas.  It was exciting and I got lots of bargains, but like I said, I just get too pooped from doing Thanksgiving. Plus I often have out-of-town relatives crashing at my house. And even though hubby is pretty capable, he is a deep sleeper, and I worry about leaving him alone with the kids in the middle of the night for anything that isn’t absolutely necessary. Especially because of ‘C’… whose autism makes each night cause for concern.

Each year I wish I could do it though. Each year I envy the shoppers who gather with their coffee and donuts and wait for hours til the stores open and they can not only knock off their wish list, but do it for so much less money. I envy them because I envison them having carefree lives that enable them to sneak out without worry and meet their friends for this adventure. And, I guess, I pity myself…which is totally unattractive, I know…

But after what they just did to that poor boy at Walmart, I envy them no more.  Someone lost a son so they could score a bargain plasma TV. How sick is that? 

And I am hugging my own boy even closer tonight…thankful that still have him and that he still has me.

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All Hail the Queen November 28, 2008

Posted by hopeauthority in Autism, Family, humor, special needs.
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It is with great pleasure that I bestow the honor of “Queen of Unclean” upon my bloggy world friend “TiredMama”. (See Contest posts 11/20 and 11/22 looking for special needs mom brave enough to admit…in detail…that she let the house go due to the time demands of raising a special needs child.)

She had me at Hello , um Toilet rings. Or maybe it was the crumbs on the floor. I knew in an instant that she was my long lost sister or something! 

My sty house is way worse than hers. I frankly don’t think anyone whose house is as bad or worse than mine would have the nerve to tell it all. I mentioned the contest to my diner friends…whose conversation actually inspired this contest. They wanted to enter too. They said they would. Maybe they, ahem, couldn’t find the computer?  

If you snooze, you lose. And we all know that our winner, TiredMama, does NOT snooze! (Her very identity is a testament to that!) We also know that she sweeps as often as she sleeps!

I’d also like to thank the other slobs, um, busy and devoted moms who entered. You’ll have to slack off just a bit more if you want a chance to win next year. I think that HeatherPride has a good chance next year…especially since I kidnapped her indentured servant mom on Thanksgiving and dragged her back to my house in a laundry bag. She is settling in nicely and I swear I’ve never seen my hubby’s underwear so white!

So, TiredMama, email me your mailing address so I can ship you off your beautiful prize. No, it’s not a college scholarship, bond, or a sports car like some contestant winners receive. Oh, no, no. It’s way better.

It’s a Thanksgiving plate. And more importantly… it’s clean! 

Ten Things I’m Thankful for about Autism November 27, 2008

Posted by hopeauthority in Autism, Family, Parenting, special needs.
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Well, it is Thanksgiving. So instead of my usual “the glass is not only half empty, but it’s chipped” take on life, I decided to reflect on what I have to be thankful for with respect to autism.

1.  I am thankful for my son, who I love beyond measure and comprehension. He has autism and I love him in spite of it and because of it. It is part of him and makes him who he is. Part-time angel boy. Part-time devil spawn.  And at all times, the cutest boy in the world.  If I didn’t have to deal with the challenges of his autism, life would be so easy. But I know I would be like all the other moms of typical children and…on some level that I wouldn’t even realize…I would take my typical life and my typical children for granted. Because of autism, I take nothing for granted. 

2.  I am thankful for my daughter, who I love beyond measure and comprehension. She does not have autism. She was born with a larger heart than God typically gives, so it could hold all the love she has for her little brother. She was born to teach him and protect him. He has changed her world in both good and not so good ways and she embraces and accepts it all with grace beyond her years.  She has changed his world. And she will change our world. She is beautiful to the core and is all the best of what a child should be.

3. I am thankful for my husband, who is my life’s true soul mate. He is without question the most wonderful man in the world. Like me, his children are everything to him. His needs come last. He is his daughter’s hero and, though he doesn’t see it, he is raising her to know all the qualities she should look for in a partner. His son feels safe in his arms.  Nothing is as beautiful as watching him sharing experiences with his son…whether on a playing field or just giving him a bath.  Yet, nothing is as heart-breaking as knowing his dreams for an easy, typical father-son relationship can not be. He is loyal, honest, kind, and loving. Before autism, he was even funny. There are many times when the stresses in life cause us to walk that fine line, but there is no stronger love than that which can still survive an autism diagnosis. Had we not been challenged by autism, I would not have known the true depth of my love for him.

4.  I am thankful for my in-laws, who at 81 years old, still remain a constant source of love and support and strength to our family. They are our only babysitters.  They support our son’s special diet.  They were willing to adjust their grandparenting style… after 30 years… to accommodate autism’s quirks. They changed… but did not lower … their expectations for my son.  They love unconditionally and completely, and honestly, they don’t even notice the autism.  They are the only grandparents my children will ever know, so God made them extra special with lots of love to share. If we didn’t have autism in our life, I would not have witnessed how deeply a parent can love an adult child and his spouse.

5.  I am thankful for the very, very few good friends we now know we have. The ones who almost “get it”. The ones who try as hard as they can to “get it”.  The ones who stuck around through the toughest times, especially the early years. Those who my kids know as “aunts” and “uncles” because they are a real part of our lives…unlike the family members and fair-weather friends who initially backed away and over time have effectively deserted us.  I used to think we had a lot of friends, and a big, close family.  Thanks to autism, I have learned what a true friend really is.

6.  I am thankful for the doctors who have devoted themselves to helping our children.  All of the DAN doctors, holistic and traditional. And all of the researchers committed to finding the cause and cure of this epidemic gripping our children. I am thankful for all the efforts of all the people who raise awareness of autism, even those whose platforms I may disagree with, because they are doing something. If we relied only on what efforts we exhausted parents could make, we would not be as far as we are today. If it were not for autism in my life, I would merely have a pediatrician, instead of the wellness professional who is helping our whole family heal and live well. And I’d know no more about autism than what I learned from Rainman.

7. I am thankful for the special education teachers and therapists whose tireless hard work has brought my son …slowly, but surely…back to this world. And I am thankful for their  parents who raised them to be the compassionate and generous people they are. The kind of people who studied at least 4 years and incurred student loans and got a degree so they can get the shit beaten out of them each day by a child who can’t help himself…and earn pennies for it.  If it were not for their patience and guidance… and their amazing ability to come back for more abuse day after day… my son would not be where he is today.  If it were not for autism, I would not know that angels like this walk the planet.

8.  I am thankful for the parents I had, who have been gone for almost 15 years and never got to be grandparents.  Nobody’s perfect, but to me, they were..because they were all mine. They gave me the skills I’ve turned out to need to handle the challenges in my life. And while I would give anything for them to have been able to see my children enter the world, a part of me is thankful that they didn’t have to see what a struggle their child’s life has turned out to be.  Thanks to autism, I now know that when a child suffers, their parent hurts 10 times worse.

9.  I am thankful for the thoughtful and compassionate strangers in the world.  The ones who don’t stop and stare. The ones who don’t make mean and hurtful comments. The people who are raising children to be caring and sensitive and accepting of the differences and limitations of others.  The ones who are populating the planet with kindness, so the world I will someday leave my children in may be not only tolerant, but brighter than the one we live in today. If it weren’t for autism, I would not even notice their supportive smiles.

10.  Finally, I am thankful for autism making me a better mother than I would likely have been.  For testing me and allowing me to prove myself worthy of the challenge…more often than not. For making those toddler years last longer than they normally would have otherwise.  And for teaching me not to expect great things, but to appreciate the greatness of small things.  

That’s what I am thankful for.

God Bless all of the wonderful special needs kids and their parents. Have a happy holiday, everyone.

Over the River and Through the Woods… November 26, 2008

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Well, we are going over the river and we are going throught the woods, but it ain’t grandmother’s house we’re going to. It’s our very good friends’ house.  So, YIPPEE, we are going away for the holiday. And we are bold enough to try to stay overnight.

These friends “get it”. Or at least come as close as you can to “getting it” without parenting an autistic kid. ‘C’ is comfortable in their home for one day trips and is only mildly annnoying with a particular door opening stim. It will be only our family of 4 and their family of 6. Our daughter is beyond excited about the prospect of the sleepover as they have triplets her age and they get along great.

Truth be told, hubby and I are looking forward to this too. These are our oldest friends of more than 25 years.  Relaxing with them…and an abundance of alcohol and good food…is just what we could use. For some reason, ahem, we never go out. And when we do the designated driver doesn’t really get to unwind. So this will be fun up in the mountains.

‘C’, and more specifically, what ‘C’ will do there, is always a concern. Its that part of autism that is very annoying…the stress during an outing over the outcome of the outing. Its a no win situation. If the outing was great, you didn’t really enjoy it because you were worried the whole time that it wouldn’t be great. And if the outing was a disaster, well, that just sucks all around. 

So I will pack up all of ‘C’s food and toys and tapes. I will bake and bring the 4 pies. And wine. The biggest mother of a bottle of good stuff I could find. I envision myself on the couch late in the evening after ‘C’ has drifted off to sleep…a wine glass in one hand and a baby monitor in the other.

Sometimes, life really is good. Let’s hope I’m not just dreaming…

LAST CHANCE TO ENTER THE NOV 20/22 CONTEST: DEADLINE IS THANKSGIVING NIGHT AT MIDNIGHT!!!

HBOT Tenth “Dive”: Update November 25, 2008

Posted by hopeauthority in Autism, Health, Parenting, special needs.
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Reminder: Queen of Unclean Contest entry deadline is approaching fast. Go to Nov 20 Money Pit post, or the Nov 22 contest post to enter!

So, after completing the 10th hyperbaric oxygen therapy (HBOT) “dive” tonight, I thought I’d pass along an update and highlight some of the memorable moments.

The most striking thing about the experience for me, is that ‘C’ didn’t fight me about getting into the chamber or  over staying in the thing for an hour and twenty minutes a pop. That’s an awful long time for even the best kid. Or the best mom. And the adventure is sandwiched between two one-hour long car rides to and from the center in rush hour traffic.

You get rolled into this 34 inch in diameter glass coffin tube in a motion that is reminiscent of entering a morgue drawer. With no room to move , you lay there like a dead Snow White trooper as the temperature and pressure rises. We really only had the one episode of ear bleeding-type of pain. Then it was just a minor annoyance to the ears. There’s lots of “NO….” rules to make you nervous too. And you can’t bring anything to read or play with in the chamber.

We’ve had dives where we spilled our little frowned upon water cup inside the chamber. Shit, is it going to electrocute us?

On dive #3, the static guard ankle strap that “grounded” me, detached suddenly. Shit, is it going to electrocute us?

On dive #9, ‘C’ had gas. Please, just electrocute us!

Ten dives in 20 days. Thirteen hours and 20 minutes. And through it all, we only watched two DVDs, chosen…of course…by Little Trooper. Both were friggin Dora shows. First, it was Dance to the Rescue. Then, World Adventure. (Can anyone explain to me what the creators were thinking when they made the moronic Swiper, who…despite the fact that he freakin steals people’s stuff … gets rescued in the first tape, and gets a friendship bracelet in the second? WTF?)

Like many biomedical and holistic approaches we’ve tried for ‘C’ over the years, this may be another “one step forward, two steps back” kind. At this point anyway. I am told its too early to really see big gains. Yet, I do see pretty big gains in language and in eye contact/maintaining attention. Noticeably big…like extending the length of his average utterance from 2-3 words to more like 7. Like, going from “Open window” to “Can you open the window please, Mom?” And let’s not forget the first “I love you, Mom”. That’s awesome stuff.

But there is a downside… at the moment anyway. ‘C’ seems to have a yeast flare-up going on. Lots of bad memories from before we eradicated the yeast over 2 years ago. Not sleeping as well, more OCD-ish and stimmy, aggressive, some peeing accidents. Lots of the crap we’d long ago done away with. So I’m bummed about that. We need to address it fast. And we are taking 2 weeks off from HBOT to do so.

I am sooo  not good with regressions. They put me into a black funk. When ‘C’ is “off”, I am depressed. When he is doing well, I am much better able to function. I always second guess myself about these therapies. This one seemed like it couldn’t hurt him at all. But it has, if only in a minor and temporary way. But that’s enough to kill me and bring out the “I’m a bad mother” thoughts. I’m too fast to write off the amazing fact that he can almost have a conversation with me now…and too quick to focus on the negative.

I have faith that somewhere along this journey of 40 miserably long, Dora-filled dives we are going to see a major, positive breakthrough to justify the countless hours we’ve devoted to this therapy and the several thousand dollar price tag of it.

Because if I wanted yeast in his gut, I could have just given him a freakin donut.

Autism and the Best Birthday Party Ever November 24, 2008

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I don’t know whether I am excited because my bloggy friends are coming out of their messy closets and boldly entering my very cool Queen of Unclean Contest (Enter on the Nov 20 or 22 posts. Deadline is Thanksgiving Day. Prize is a beautiful Thanksgiving plate, to be shipped to the winner.) or if I’m happy because we went to a very nice birthday party yesterday.

No matter. I’ll just be glad I’m happy for the moment.

This party was the first of its kind for us.

It was all autism and special needs kids, instead of the typical mixture of NT and autistic.  It was small in size (only 5 first grader boys) who all knew each other from school. It was held in a private house… not a Chuck E. Cheese fiasco. It looked more like a playdate than a birthday party.

By some stroke of divine intervention, each boy was interested in different toys and each happily scurried off to his own area to play with his treasures. The party host boys… twin brothers… were so gracious in sharing their toys with the group.  (‘C’ quickly commandeered the Diego Rescue Center, every little figure he could find from any play set, a garbage truck, a big Mater, and a Speed Racer. He was in heaven.) We had boys playing with a cash register, a Wii, Geo Tracks…you name it. Sure, it would have been nice if the boys played together, but that will come. And there was not a single scene. 

I brought ‘C’s food and cake, like always, but it was easy and convenient to reheat it in the comfort of the home of a friend who understands… instead of asking some pink-haired teen with an attitude to nuke it for me in the dirty kitchen of a party place.

The moms all knew each other and each kid. An understanding, helpful sister helped out with supervision. There were no forbidden snacks to tempt ‘C’ and his goody bag had no candy, just toys. Again, that’s because the moms know and care about my son.  (If only family were that caring…but that’s another post!) The way the house was configured, the boys were contained to one big room.

It just doesn’t get any better than that. Thanks, Barbara and Beth!

Now if someone will just remind me of this post in March when I’m out talking to some pink-haired teen about booking ‘C’s party…

Queen of Unclean Contest Added to the Nov. 20 post! Go Enter! November 22, 2008

Posted by hopeauthority in Autism, Family, humor, Parenting, special needs.
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Over 40 people read the Money Pit post before I thought of adding a contest to get you all to “come out of your messy closets” and open up about the state of your house!

I know my own pathetic story is hard to beat. But give it a try. Trust me, it’ll bring us closer.

Deadline is Thankgsiving Day. Prize will be something cool related to Thanksgiving, so the winner will have something to remind her each year at this time that she was the Queen of Unclean.

And if you are a home services provider/therapist and are working in a home that should be entered, feel free to enter the contest BUT DON’T NAME ANY NAMES! (And Erin, if you’re out there thinking about entering my pit, go for it. I left out plenty of things from my story…to throw off the health inspector… so as long as you don’t mention the Southwestern themed bedroom, no one would notice…but me. And I’ll get even…)

The juvenile in me is screaming “I double dare ya!”

Autism and the Money Pit…A “Contest” Post November 20, 2008

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Note: There is a contest at the end of this post. Good luck to all who dare to enter!

Remember that movie “The Money Pit” about a couple who bought a house that literally started to fall apart bit by bit the moment they moved in?  Well, that house has nothin’ on mine…

I was talking to some friends of mine this morning who are all moms of autistic boys and I was alittle surprised to hear that every one of them was embarrassed to some degree about the condition of their home. No wonder we’ve been meeting at the same diner every Thursday morning for the past three months! None of us wants the others to see the disaster we call “home”!

And we each thought that we were the only one who felt that way.

Now, to be honest, I can’t blame my “Oscar Madison” ways on autism. There are too many old college roommates who could…and would…rat me out if I tried. I was always a bit of a slob. Not my person, but my surroundings.

I’m clean. The clothes I am wearing are clean. The clothes I washed are clean and folded…but they are all over the place, never making it to their designated drawers. And there’s always a pile still to be washed…

Dishes never go away. Ever. With ‘C’s diet, I am forever standing at the sink washing, using, rewashing and re-using every pot, pan, plate and utensil in the house. I don’t have the energy or the guts to move the “concert” that ‘C’ assembled in the den, so it gets vacuumed around (but not often enough). I am way, way behind in those traditional “spring/fall cleaning” chores, like chandeliers and outside windows. 

And that’s not even counting the real “trailer trash” effects of this pit. Like the tempermental leak in the den roof. It is unpredictable. We can be bone-dry in a hurricane, or be scrambling for a bucket in a drizzle. That’s always fun during a holiday dinner party… How about the wallpaper that’s been up so long that its decided to come down on its own? Or the bathroom and hallway wallpaper that was really stuck on there for life…until ‘C’ ripped off a piece of it?  And let’s not get started on the fact that our bedroom has been a Southwest theme so long, that I fear its going to be back in style soon!

Before autism, I was a slob who had cleaning at the bottom of my list. Now, it’s not even on my list. Why put it at the bottom and have it taunt me there? I know I’ll never get to it. When it gets bad enough that it can’t be ignored…and we all know when that point is…it will get done.

How universal is this lack of housekeeping among autistic families with young kids? What rationale do you use to get past the guilt of it?

For me, it’s simply a matter of priorities. I love and appreciate a clean house… and had one every two weeks until the woman I hired to do it gave up the business after 6 years. My kids and their schedules come first, and ‘C’s diet takes up a lot of time. Laundry can’t wait and neither can groceries. So cleaning has to wait. Unless I want to give up what little sleep I get.

Should the extra time, attention, and money required for raising an autistic child give you a “pass” on what’s expected in the housekeeping department…assuming, of course, that the health inspector isn’t at the door? Do you avoid hosting social functions because you’ve neglected your home?

And, most importantly: Do you have room in your neglected, moldy, web-laden, unfinished, leaky basement for me and my family when my own Money Pit actually implodes?

I dare you all to post your story about how badly you’ve neglected your home and why you’d rather die than host the holiday dinner.  (People with only minor dust-bunnies need not apply!)  I will award a prize to the contest winner, which I will determine at a later date, but it will be cool. The deadline for the contest is Thanksgiving Day.

C’mon, you turkeys…start fessing up.

Autism Goes to Woodstock November 18, 2008

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Hey, man. Wanna pile up in my old lady’s van and head on up to Yasgur’s Farm? There’s a groovy concert goin’ down, dudes…

If there’s a crowd control officer in the audience, please make your way to my den immediately! There is an out of control concert that keeps growing in size with each passing day.

You see, ‘C’, has taken the “lining up the toys” quirk to a new level. He has brought…not just any ol’ concert to my den… but the reincarnation of Woodstock itself. It’s kinda scary.

‘C’ has set up every conceivable toy person/animal/game piece/figurine on the den floor, pretending they are at a concert. To date, there are over 200. Yes, I said 200. Plus.

We’ve got all the animals from the A-Z zoo (including the “S”eal whose face was chewed off), the entire population of Little People, Barbies and Bratz of all sizes and their GI Joe dates, people from Sweet Street and Sesame Street, mini soldiers and community helpers, imaginext men, Rugrats and Pooh folks, Potato Head and friends, beany babies, Polly Pockets, Disney princesses and princes, villians and dwarves, every car from CARS, some Thomas trains, the big Nutty Elephant and his peanuts…who won’t sit near him…and most of my kiddie nativity set (including baby Jesus…who in a crowd this size looks suspiciously like Trig Palin)!

I say “most” of the nativity set because one of the three kings/wisemen is apparently the star of this show.

The scene looks like Woodstock. All the different people from all over the place, peacefully assembled for a concert. They are looking up at the Little People Farm barn sitting high up on a folding chair above them. “Mr. King” (as ‘C’ calls him) is standing in the open barn door space, ready to start the show at any moment. Of course, my jokes about whether his name is “Don” fell on deaf ears. And my attempts to move Mr. King back into the barn and away from the doorway… as if he had stage fright… just pissed ‘C’ off. (No wonder he won’t play with me!) But I got a laugh anyway. Bad mommy.

However did they all get here, you ask? Why just look at the freakin convoy of 27 vehicles lined up like something out of Field of Dreams.

We’ve got Mack from CARS, a couple of Hess trucks and fire engines, the Speed Racer gang, a Barbie Camper, a few school buses, some construction trucks, several remote control cars, and a garbage truck, to name a few. There’s even a Polly Pocket limo and the Little People Airplane on hand for the VIPs. (Thank God the Hot Wheels convention is apparently out of town for now or there’d be no room left to walk…)

It amazing what a quiet and calm group has assembled here. The top heavy Cat-in-the-Hat keychain…with his constant tendency to topple over (and therefore piss ‘C’ off) …is the only troublemaker. I may have to send the Weeble fuzz cop after him…

If anyone has a suggestion on how to dismantle this event… without it causing ‘C’ and his OCD tendencies to runaway with a hippie band of acid-taking freaks…please let me know.

What? You’d like this concert to visit your hometown?

Far out, man.

“I Love You, Mom”…Finally! November 17, 2008

Posted by hopeauthority in Autism, Children, Parenting, special needs, Uncategorized.
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It took 6 years, 8 months and 2 days. But the day finally came. And it was so worth the wait.

‘C’ finally said, “I love you, Mom.”

Without any prompting, coaxing, or set-up. Not in response to my saying I love him. Completely spontaneously and out of the blue. 

I’d imagined this moment for years. I figured it’d happen almost predictably, while snuggling up somewhere together. But, instead, it came as a jubilant outburst of affection right in the middle of the foyer. Followed by a running leap that could topple a professional linebacker. But not me. I had found the strength of 10 grinches linebackers…plus 2.

It was all that I imagined it’d be…and more. Some things are truly worth the wait.