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Halloween Should Be National Autism Day! October 31, 2008

Posted by hopeauthority in Autism, Children, humor, Parenting, special needs.
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Why can’t every day be Halloween?

There is just something magical about Halloween. It’s always been my favorite holiday and it’s obvious that ‘C’ inherited that gene. For the past three Halloweens, it’s really been like a witch cast a freakin spell on ‘C’ and made him typical for the day. The whole day. And night.

Any day of the year, if you ask him what we do on Halloween, he will snap out of whatever he is doing and answer “Go trick-or-treating at Carly’s house!” (his sister’s friend). Halloween can… and has… been used to blackmail him into good behavior for at least a week now. He’s been talking about being the Hulk for weeks. He even put on the horrible hard plastic with flimsy elastic band mask…whose eye holes don’t line up.

I let him go to the party at school and I’m happy to say it went well. I’d gotten the teacher’s assurance that she’d be on him like a hawk.  I gave him a precautionary enzyme, because, well, let’s just say I have trust issues…I spent the entire freakin morning preparing brand new recipes so he’d have new treats there which would be “legal” on the Specific Carbohydrate Diet.

I found and modified some recipes on the pecanbread website and made him pumpkin-shaped pressed cookies (which I cursed because as they baked and puffed up, the shape looked more like a circle than a pumpkin). So I rolled them and cut them into ghost cookies with raisin eyes and mouths (which I also cursed since I had to keep re-freezing the dough). Then I made mini cupcakes with fake fluff-like frosting in Halloween liners. And I caved in and let him have some blueberries since the enzyme is designed to help him with the phenols/salicylates in the berries and the raisins. Blueberries are his favorite food in the world. They just don’t love him back… Because all the kids were given Clay’s treats too, he didn’t seem so different and he didn’t cry… despite not having those glowing orange cheetos on his plate.

He was so excited to go trick-or-treating after school. We did our neighborhood first then went to Carly’s. All this language came out of nowhere. Mr. Chatty all day.  Mr. Manners too. Lots of unprompted “thank you”s as he left each doorstep (of course, whenever they opened the door he’d state excitedly “I want some!”)  He’d be the first to get to each door out of the pack of 10 kids…so he could ring the doorbell.. one of his favorite old stims. It makes me laugh now to think back on the behavior plans we’d make to get ‘C’ to stop ringing doorbells and opening/closing doors. And then Halloween would come and undo all that work.

Each year on Halloween, ‘C’ gets better at the whole thing. This was the first year ‘C’ didn’t even try to get into someone’s house! (Last year, he made it into 2 houses despite one of us being right there on him!) Talk about progress. He is always the youngest, and the last one standing, and would keep going til midnight if we let him. He is so good about not being able to eat any of his candy–ever–because he never sees anyone else eating theirs. All he knows is that the fun is in the collecting!  He could barely stay awake for his bath tonight. My tub will never be the same…black hair spray and green face makeup. Yikes!

I don’t know if it’s simply that Halloween is a night for craziness, for acting up, for packs of kids running wild in the streets and that’s why ‘C’ fits in so well. Maybe… as the harvest moon shines overhead… the typical kids take a step onto the spectrum with their behavior and ‘C’ takes a step off the spectrum with his… so the gap between the two worlds seems to close for 24 hours?  Does the anonymity of the costume factor in somehow…Is he just not ‘C’ because, well, he’s not ‘C’ on Halloween (i.e. he’s the Hulk)? Did he think in that smart little head of his, “Hey, I’m the Hulk. I’d better get my friggin act together!”? 

Well, whatever is behind the magical transformation of ‘C’ every Halloween, I’m always sad to see it go. Especially since it leaves behind a mountain of candy just waiting to glue itself to my ass. 

So if anyone knows the witch responsible for this spell, please let her know that my soul is indeed for sale. All I ask in return is that it be Halloween every day… Oh, and that all the homes give out MaryJanes.

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Halloween Class Party: To Go or Not? October 29, 2008

Posted by hopeauthority in Autism, Children, Health, Parenting, special needs.
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Phew. It’s taken a few days to get back up to speed with my regular life…whatever that means. And I was only gone for 36 hours or so. Imagine taking a real vacation!

Enter the next dilemma in the life of the autistic boy who could not eat anything. (Translation: My son’s awfully restrictive diet… though amazing and necessary… sucks each day.) It is particularly hard on class party days.

Like Friday’s Halloween party in school.

There will be all the typical junk which are staples of the standard American diet…chips, cake, sugary and dye-filled punches, neon orange cheetos, and of course, tons of candy. The plan is to load them up on this crap right before the buses come and send them home before the transformations take effect. No parents or costumes allowed.

I am so torn over this. All of my choices are losers. I can take him home early from school so he misses it. I can let him stay in school, but arrange for him to miss the party and go to speech. Or I can let him go to it.

For choice #3 I can only hope that all the special home-made substitute “treats” I’ll spend several hours providing for him…which, sadly, don’t glow… will somehow miraculously divert his attention from all the wonderful excesses his peers are wolfing down. Oh, and of course I have to trust that the teacher will literally sit on ‘C’ during the whole thing to prevent him from stealing a forbidden treat that’s been abandoned by a peer…or worse…dropped on the floor. (He’s been known to spot an M&M in a dust bunny corner at 40 yards!) He may be ok. He may have a meltdown. Its anyone’s guess. If he gets something forbidden, the whole trick-or-treat experience will be ruined for the afternoon and evening. Not fair to him or his sister.  But it kills me to have him excluded.

What to do?  What to do?

Welcome Back, Mommy October 26, 2008

Posted by hopeauthority in Autism, Children, humor, Parenting, special needs.
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Amazing what you can gain…and lose out on…in only 39 hours.

The gains from my business trip are too numerous to even count at this point. Time wil reveal the true level of the benefits received from this wonderful seminar and the many contacts I made there.

The things I missed…the losses…are a little easier to tally.

First, I feel the need to say that I didn’t  miss the leak in the den roof. That’s because I had my very own leaky roof at the hotel. Now, it wasn’t like it was pouring on me. In fact, had I not been sitting at the foot of the bed trying to figure out why the freakin TV wasn’t working, I may not have noticed the leak. But it hit me in the head and got my attention.  And this is from a major national hotel chain! So much for the sleep I thought I’d get…

But I did miss my daughter’s first sleepover party out of our house…though I called her from the hotel to check up and she was lovin it. ( And, yes I did cave in on my “no-sleep-over rule.)

And I missed ‘C’s first special needs baseball clinic, which unbeknownst to me, resulted in the awarding of his first medal and first trophy, plus an assortment of other very generous gifts like a baseball glove, bat, tee-shirt, logo turtleneck, hat, and several other items. He was pretty good, especially for me being away.

So, for two days, I did something rare: I did something for me. And, to my admitted surprise, the family survived just fine without me. All the guilt was for naught.

I walked in tonight to a Norman Rockwell scene, of sorts:  Daughter rushing to the front door excitedly reciting each detail of the awesome sleepover and following me upstairs to where hubby is kneeling beside the tub where ‘C’ is enjoying his bath. I stand for a moment waiting for ‘C’ to realize I am home and to excitedly shout “Mommy!”. He looks up…

“Presents!”

What the frig…?!  Guess I should be happy. (And I really am.)

My little boy is “typical” after all…

Autism and the Absent Mommy October 25, 2008

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As much as I claim to to be the woman in the commercial yelling, “Calgon, take me away!”, and there’s many days I feel like I will have a breakdown if I don’t get away from the craziness, the truth is that I hate to go away from my kids.

But sometimes, it’s necessary.

This weekend I will be away from them from pre-dawn on Saturday til just before bedtime on Sunday. I am attending a writer’s seminar in a neighboring state. I just found out this week that one of the presenters… who happens to be not only famous, but an inexplicably generous soul…said I could attend as his guest!  It was an offer I’d be a fool to pass up.

But there is a high price to pay, after all…

All the shopping, baking, and cooking in advance so ‘C’ won’t starve in my absence…all the laundry and schedule adjustments. Getting coverage for rides to this or that, since both kids have conflicting activities on Saturday. Don’t get me wrong, daddy is good with the kids… But he’s no mommy.

And no matter how well I prepare things, there are two givens:

One is that my absence will cause ‘C’ to be “off”, which will be stressful on all of them.

And two is that no matter how much I am loving this seminar and the fact that I will get to sleep alone in peace in a hotel… I will feel a ton of guilt (that’s just me!) and I will probably not sleep anyway. 

Anyone have an opinion on whether it is okay to go away overnight without your autistic child? When is it okay to put them through the added stress that your absence causes? Just for work, vacation, emergencies?

I’m hoping to advance my at-home writing career, so I can continue to provide both children with what they need.

It sounds good on paper. But why do I feel so sad?

Autism and Hyperbaric Oxygen Therapy October 24, 2008

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I’m breathing easier today…literally.

I am surprised and happy to report that our insurance company (to remain nameless) has approved our request (from June!) for ‘C’ to receive Hyberbaric Oxygen Therapy (HBOT). Although the company is only willing to approve 10 of the anticipated 40 treatments at this time, that’s 10 more than I thought they would approve. Hence, my sigh of relief.

Since I am trying to do the holistic thing with ‘C’, I really love the idea of HBOT. It’s oxygen, for God’s sake…long recognized as a good thing!  No nasty or prolonged side effects to worry about, unless you’re prone to seizures (which is not the case here). I’ve read that HBOT can stir up some yeast issues in the gut, so I’ve waited to get that well under control before starting and will keep a close eye on that as we proceed.

Some people get pre- and post-brain scans done so they can have actual proof of any changes in the brain. I’m not doing that because it’d be too difficult to accomplish without  knocking him out…twice. I’m hoping that the changes will be evident to everyone.

The place we’re going allows me in the chamber with him (so long as I have a chest x-ray first). Hey, maybe I’ll come out of this looking better. Maybe, in addition to improving ‘C’s life, it’ll take away the effects autism has had on my tired old body. A two-fer.

They call each treatment session a “dive”. It supposedly feels like the pressure you get when diving deep or flying in a plane. It takes 10 minutes to get to the right pressure, one hour at pressure, and 10 minutes to de-pressurize.

For the best benefit, the treatments need to be done pretty close together. We’re doing 2 the first week, then 3-4 per week from then on. It’ll be a nightmare on the family schedule, for sure. And its 45 minutes away from home.

I plan to report on ‘C’s progress as we go, so anyone interested in going diving with us, please mark your calendar for November 4th.

That’s when the next leg of ‘C’s journey back from autism will begin…

Approaching Autism Holistically…The Use of Elm October 21, 2008

Posted by hopeauthority in Autism, Children, Health, humor, Parenting, special needs.
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Ok.  A little disclaimer before I get going since I am not a doctor and I don’t play one on TV.

Nothing in this post should be taken as medical advice or should be attempted without first discussing it with your own doctor and only then, with his or her recommendation and supervision. GOT IT?

Like any parent, I am trying to make the best decisions for my son’s recovery. For me…over the last few years… that involves a holistic approach to not only autism, but to ‘C’s wellness in general. And we are so happy with the results so far.

Because he is on the Specific Carbohydrate Diet (See “Autism Diet Help” Page), he takes several vitamin and mineral supplements to ensure his nutritional needs are met. There are enzymes on occasion to help him digest certain foods. Fish oil. The versatile Natural Cellular Defense drops to boost immunity and pretty much cure anything short of cancer.

Over time, this regimen has brought him from a sickly, red-cheeked, dark-eye-circled toddler hunched over from chronic gastrointestinal pain, and suffering from night terrors…to the happy, healthy-looking little boy who walks upright now, can sit and attend without distractions from stomach pain, and who sleeps through the night. In short, it’s given him his life back.

So, physically, he is doing much better.

But he happens to be an anxious kid. It’s the biggest obstacle to his mainstreaming. It goes against everything I am trying to do, to consider giving him a prescription medication to alter his behavior. I am just not the Ritalin type. I will stop short of saying “Never” to medication, but I just can’t see that happening for my son.

And I don’t judge those who do medicate, so please don’t judge me for my choices. As long as parents’ actions and decisions reflect what they truly believe to be the best thing for their child…and not the best thing for themselves… who am I to judge? We get enough negative shit from the general public already, so we should just support each other.

So, I wanted to share a holistic remedy/aid for “naturally occurring nervous tension” that ‘C’s chiropractor/naturopath suggested we give to ‘C’ to help with his anxiety…its a flower essence of ELM.  We started him on this just over a week ago and the results have been amazing! 

I know what you’re thinking. By nature I’m very skeptical about all this holistic stuff, too… it always sounds kind of hokey to me.. but time and again, I have been proven wrong. And it seems this is another time.

‘C’ wasn’t behaving as well as he usually does a few weeks ago. It was also around the time of the funky toe infection. So once I discovered the toe, I wondered if that was the cause of his sudden tantruming and difficult transitioning in school. Or is he just anxious with the new teacher? Or is it just another freakin unexplainable part of autism and it has no trigger?  So the elm was worth a try.

He is a different kid. There really is a calmness about him. He seems able to stop himself from melting down when faced with the exact same circumstances that would always cause a melt-down. Things like when the friggin balloons he displays all over the kitchen either blow away or get moved so we can, um, EAT … Now, instead of the world falling apart, he just gets this exasperated look and goes and fixes them again.

And he can actually be pried away from the computer now so the rest of use don’t have to listen to the reggae background music of the Freddie Fish game for hours on end. Wow. Taking turns. What a concept.

So, things are much better in school. Things are strangely calm at home.

There’s just one thing that still sets him off: When his dad changes the channel from Noggin to the game. Even putting the game on picture-in-picture is not acceptable ( “I want little TV-OFF!” ). ‘C’ even moves the remote away from hubby’s reach…which cracks me up. (I’ve been trying to wrestle that thing away for 20 years!)

So my dejected hubby wanders off to the kitchen to watch the game on the little TV.

Either that, or he’s upping ‘C’s dose of ELM…

Garage Sale Fodder October 20, 2008

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It had been over ten years since my last garage sale. It was before either of the kids came along. Most of the stuff being sold was bargain chain “newlywed furniture” and a bunch of crappy bridal shower gifts that were gathering dust for 10 years. You know the stuff… five crystal serving trays (each weighing in at 7 pounds before food ), a sterling silver chafing dish, the sandwich maker/waffle machine…

There was a reason I waited so long. I love to go to garage sales, but I hate to host them. I’ve never gotten over the panic I felt the last time around when I first realized what “early birds” were. I had taken out an ad and moments before the stated start time I hit the button on the garage door opener. Before the door was even 8 inches off the ground, a pair of hands reached under the door and grabbed onto these hideous antique lamps my inlaws had brought over to try to unload. There was a mob out there ready to descend upon us. I couldn’t even get the stuff out the driveway until the first lull came a few hours later.  It was like a horror movie to me. And I still twitch when I remember it.

So this time around I decided no ads, just signs. Not only to avoid the creepy hands, but because…with autism…you never know if you ‘re gonna have to cancel it. But it went off as planned for Friday and Saturday and I sat with my inlaws in the cold, autumn air for two days. I trashed my house, lost two nights of sleep and two days of time preparing for this sale. I made $200.

Some of the big items I wanted to get rid of while ‘C’ was in school on Friday, my husband vetoed. Including the freakin Wiggles Big Red Car which I’ve been tripping over for years now. Dreaming of watching that thing pull away from my house is what kept me going through all the hours of planning. He held back the Snoopy Snow Cone Machine… which is a shredded finger waiting to happen. And some other things.

‘C’ thought Christmas came early. There was not a toy made that we didn’t own. I must have had two hundred toys out there… it was kind of embarrassing to see them all.  Some of the toys had been packed away in the garage for years, so they were new again to ‘C’. And he began to play…

And he began to bring them back into the house. One at a time. Like a sneak.

And let’s not forget how he tried to pull the Barbie jeep (even a pink vehicle isn’t safe!) out of our neighbor’s arms. She knew our situation, so it was not a big deal, but I felt so bad for him since he didn’t understand the concept. We distracted him and I sent the neighbor home with the toy in a bag…lest ‘C’ notice and hunt her down for its return! 

So between all the toys that didn’t get sold and all the toys that made their way back into the house (and all the people who chiseled me down on my already low prices), and the hundred other things that sucked, this sale was a bomb.

But I do laugh when I think of ‘C’ sneakily retreiving his old favorites… like the Toy Story scene where Woody tries to save Wheezy from the Yard Sale.

Good thing I love that little man to infinity and beyond…

The Lacrosse Legacy Lives On October 19, 2008

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Ok, he’s not quite “Air C” on the lacrosse field (as he was on the basketball court), but he had a good time and he was pretty good at this very challenging sport.

‘C’ went to yet another great sports clinic sponsored by SEPTA. It was a 3 week lacrosse clinic for special needs kids K-12.

Although we try not to get our expectaions up for these kinds of outings, this one was different. We were  balancing our doubts about ‘C’ (or any of the kids) even being able handle a lacrosse stick vs. the looming unspoken prayer that ‘C’ would like this sport. Why this sport?

Well, hubby played lacrosse at Hofstra “back in the day”. When hubby came back to the hospital the morning after ‘C’ was born, he had a child’s lacrosse stick…and child’s cup…in hand. (Oh, and roses for me or he’d have been a dead man!)  Now that I think back, it’s funny how he came to the hospital when our daughter was born with a mitt (I played softball at Hofstra) and a Barbie…and she grew up to play softball.

So, I knew it’d mean so much to him if by some chance, ‘C’ took an interest in “his” sport…though he’d never admit it.

The weather was great each week. The little stick from the hospital was the perfect size for ‘C’. Hubby got his old gear out of the garage and showed ‘C’ some simple moves like how to hold the stick and how to shoot.  It was fun to watch my husband stand there at times, stick in hand, spinning it around so that the ball would not fall out… apparently the technique used to run with the ball. But that’s a pretty advanced skill.

To be honest, I’d have to say ‘C’ was half-interested in the drills and half-interested in trying to drive off in the golf cart that hauled all the gear onto the field! But, hey, the half interest was a start. And who are we to look a gift horse in the mouth?

So, I got some great pictures of daddy and his boy with their sticks.  

And right before it was time to pack up… like a gene somewhere deep inside fired up automatically… ‘C’ looked up at his dad and grinned. Then he twirled his stick– with the ball staying in it.

The legacy lives on…

Parent Member Perspective October 17, 2008

Posted by hopeauthority in Autism, Children, school, special needs.
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One of the best ways to put your own life in perspective is by being a parent member.

I volunteer about twice a month to be a parent member in the Special Education Dept. of my school district. After being trained for the position, you sit in on the annual CPSE and CSE meetings for other children in the special needs program. Hopefully, you will be able to help the parents…if they want your input… in their decision to either accept or reject the district’s recommendations regarding their children.

The obvious benefit… after helping others, of course… is that you get to know the administrators and become more comfortable in their presence (which will make you less nervous when your own child’s meeting comes along). You get to see what services other children are getting, so you have a better idea of what to expect for your own.

And, in the unspoken world of politics, you hope that on some level…if the situation is a close call…that they will be more inclined to be generous with the services when it comes to your own kid’s meeting.

One of the hardest things about these meetings, though, is reading and hearing about each of these special children’s particular challenges. When a child is “closer to typical” than yours…or is mainstreaming faster… it can be tough not to feel sorry for yourself and your child.  Yet, when the child has even more challenges than your own, it makes you count your blessings. And you can’t cry.

If your situation can accommodate it, consider volunteering to be a parent member in your own district. It’s like community service for our own special needs community.

The Basketball Breakthrough October 16, 2008

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Move over Michael Jordan. Step aside Shaq. There’s a new boy on the court… We call him Air ‘C’ .

With a pocketful of deflated balloons as reinforcers, hubby and I and the two kids headed out last night to a special needs basketball clinic at the middle school, sponsored by our SEPTA. We’ve learned from past experiences with social outings, not to expect too much, so that we don’t get too disappointed.

But that hope…the hope that you may have finally hit upon something social that your child will love and thrive in…is always there. A flicker that’s waiting to be fanned into a flame.

Well, last night on the basketball court, there was a freakin five alarm fire, baby!

Really, it was one of those jaw-droppers. ‘C’ went into the gym in a strange school with only a minute’s hesitation. Once the strange coach took out a bag of balls, ‘C’ ran over to them, picked one up, and proceeded to take our breath away for the next 90 minutes. He even threw stray balls back to other kids!

During this magical clinic… when time stood still for my husband and me… we watched as ‘C’ did drills, including bounce passing to a partner, and dribbling the ball all along the perimeter of the court. There were times when they had to stop and come over to the coach and sit and listen, and then get up and do what they were just told. Lots of transitions…not normally C’s strong point.

And the boy can shoot!!! This skinny, 6 year old pip-squeak can actually get the ball into the net–the regulation size height! One shot after another. Repeatedly. Nothin’ but net! Holy crap! Who knew??!! There he was with his newly issued basketball shirt hanging off him, handling the ball like he was born to. Every successful shot brought a leaping high-five and a smile so wide that it barely fit on his cute little face! He was “the man” and he knew it! 

He was happy and relaxed in the middle of a strange place full of strangers. He didn’t need the balloons. It was his moment to shine. The pride we felt for him as his family at that moment can’t even be expressed.

And as we left the gym and walked into the crisp night air, my little man of few words summed up what we all were feeling…

“I love middle school, Mom”.