My Debates. My Hofstra. My Autism Issue. October 15, 2008
Posted by hopeauthority in Autism, Election, politics, special needs.Tags: Autism, election 2008, Hofstra, McCain, My debates, Obama, presidential debate, special needs
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What an emotional night.
The last presidential debate just took place right here in my own backyard. At my alma mater, Hofstra University.
I couldn’t help but think back…way back…to my carefree years there. Student government. Student newspaper. Dorm life. The good old days. Where I met my husband and our life together started out. Where we met most of the friends who remain our closest friends still today. Where I never would have thought of the word “autism”, or any other word that would hint that my life would be anything but positive and wonderful and well, plain perfect.
But tonight the word “autism” was actually uttered on Hofstra grounds and to an audience of millions. Not just a speedy reference to the vague “special needs” we’ve heard in the past. But both McCain and Obama actually slowed down for a moment to address the need for federal funding and reform for our cause. And for a moment, I actually believed that some change may come out of this election. That there is at least a possibility for change. And it felt good to be hopeful… if only for a moment.
Many of my life’s greatest hopes and dreams were put into motion while I stood on Hofstra grounds.
Call it karma, but tonight I’ll dream that the two men who stood on those grounds and spoke of autism will actually become caretakers of our common dream for our special kids and our hopes for a brighter tomorrow.
The Quest for Last Hulk Costume October 14, 2008
Posted by hopeauthority in Autism, Children, humor, Parenting, special needs.Tags: Autism, costume, halloween, Hulk, special needs
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Did I say I loved Halloween? What the hell was I thinking?
For the first time this year, “C” showed an interest in what he was going to be for Halloween! Finally! He is 6 now and from the time I put on that infant Batman costume…long before autism reared it’s monstrous head… I looked forward to the day he’d choose his own costume. What an unexpectedly long wait its been… We’ve done Woody, Capt. Feathersword, Superman, The Hulk, and a Ninja. All my choices. All chosen with comfort in mind. No masks. Now, he is ready to choose!
I couldn’t contain my joy! Off we rushed to the local Party City. The walls were covered with pictures of kids costumes. What, oh what, would he choose?
Eagerly, I pointed from one to the next asking “How about a policeman? fireman? pilot?”
“No. No. No.”
“What about a doctor? clown? Old, fat 70’s Elvis?”
“No. No. No.”
Okay. This sucks. He is lining up the cans of colored hairspray and isn’t interested in anything, except…
“Can I have it?”
“Honey, that’s the infant Hulk costume. Its too small, but you can be the big boy Hulk right over here. Ok?”
“No.”
Just freakin kill me…
That was last week when I could have gotten him that ol’ Hulk costume #206 in a medium, meant for big boys, complete with built in chest muscles and scary hard plastic mask with tiny eyeholes, that he’d never wear in 100 years. And never mind that I was crushed over his choice being a duplicate of a prior year’s costume.
Now, repeat the performance with daddy present this past Saturday and “C” asking for the big boy’s version, like a good little cooperative kid. ARGH! They are all sold out. Every single store within 60 miles of my house was sold out. I am screwed.
Three days and 300 phone calls later, I get a woman…a kid really…who tells me that they just got one in as a return. One. Boy’s medium Hulk. She’ll hold it for me for an hour. (Can you say bat outta hell?…)
I got it. I actually got it. It’s like the costume gods were shining on me tonight. They overcharged me, but I don’t care. It has only one little seam coming apart, but I don’t care. It fits perfectly…though the three scratchy tags at the neckline gotta go. To my amazement, he even tried on the mask all by himself, but couldn’t open his eyes because of those cock-eyed eyeholes. No matter…I plan on doing his face green and his hair black.
And as I sit here writing, he comes up to me… naked except for the Hulk mask on his head…and says “Go trick or treating. Carly’s house. I’m a hulk”.
All is right with the world tonight…
It’s the Great Pumpkin…NOT! October 13, 2008
Posted by hopeauthority in Autism, Children, Family, humor, Parenting, special needs.Tags: Autism, autumn, halloween, pumpkin picking, special needs
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I love Halloween. I love everything about it. In fact, I should probably live in Salem, Massachusetts.
And what would Halloween be without a trip out east for pick-your-own pumpkins?
So, off we went on this warmer than usual October day, in search of the perfect orange globe. It was our family of 4, plus Nana and Papa, the wagon, and a huge picnic lunch. There was a farm just about every 50 feet it seemed. But I wanted to go to the one where we go for our berries in the summer. They have a corn maze and wagon rides, live music, mums, playsets…
As usual, we got started later than we’d hoped. Is it me? I can never get all the crap packed up in under 2 hours! Especially with ‘C’s special food needs. And it was the last day of the long beautiful holiday weekend. And the excitement was building as we passed all those homeward bound SUVs whose roof rack cornstalks seemed to be waving at us…
Wait, they weren’t waving at us. They were mocking us.
After the eighteenth chorus of “Are we there yet?”, we pulled into the dusty lot to find that… the pumpkins were picked through! Four days of beautiful fall weather and throngs of tourists had ravaged the fields of any worthy contenders. So… could I just settle on finding something acceptable for this year and making the most of the outing? Noooooo. (Mistake number one.)
Family…especially ‘C’ … didn’t appreciate being hustled back into the SUV so quickly to search for a less popular pumpkin patch. We get to another one. It’s worse. (Mistake number 2.) But we get out and try to make the best of it.
It turns out its not a “pick-your-own from the vine where they are growing” place. Oh, no, no…
It’s a “pick-your-own from the pile of pumpkins they trucked in from some other freakin state and just dumped haphazardly on this hill as if they grew here and no one would notice” kind of place! Ok, take a deep breath. At least I didn’t have to worry about the inlaws tripping over vines and re-breaking their hip and leg, respectively.
‘C’ unfortunately, was not as into this adventure as I’d hoped. So, while the rest of the family picked out lame pumpkins, I spent the time there with him alternating between the goats’ and turkeys’ pens and the makeshift market for organic veggies, where we repeatedly walked up and down each aisle naming the 20 varieties for sale. Maybe it wasn’t his autism that caused this detachment. Maybe he is genetically as into Halloween as his mom and he was just as disappointed in the pickins’.
Well, we didn’t get the Great Pumpkin this year. We got some crappy, imported versions. And we got some gourds. And some mums. But, we did not get any cornstalks. Oh, no. There will be no cornstalks.
We will not be mocked.
Fleeing the Authorities October 10, 2008
Posted by hopeauthority in Autism, Children, Health, humor, Parenting, special needs.Tags: Autism, ER, humor, poison control, special needs, sunscreen
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I swear. Any day now they’re coming. Surely they’re coming to take them away.
At the risk of sounding paranoid… I feel like my name is on some government list. Red-flagged. Black-balled. Whatever the term is for too many visits to the ER. Or too many calls to poison control. (Do you know that the triage nurse actually said we looked familiar last time we were in the ER in August?!)
And it’s not that I’m a neglectful mom. On the contrary: I am a hovering, sleep-deprived, permanent shadow… A “nervous Nelly” whose been on the wrong side of that 1 in 150 kind of statistic a few too many times in my life to ever take anything less than very seriously. In short, I always go to the ER…or call poison control…when in doubt.
And despite all the hovering, somehow… in the nanosecond that I blink or the millisecond that I pee… my son will get into some kind of trouble–or just look like he did. And his verbals aren’t up to speed to explain himself.
Like yesterday. Off from school and playing with his favorite 40 toys. Phone rings…or should I say opportunity knocks? In the time it took to grab the phone and turn back to him (or actually to the space he used to occupy), he was upstairs.
Rounding the corner at breakneck speed, I spy an open bottle of sunblock standing on a lower level step. Hot on his heels in what felt like one of those slow motion movie scenes that they use to build drama, I reach the top of the stairs and catch him as he’s putting his toothbrush in his mouth. “Noooooooo!”
Like a lion tamer pulling apart the jaws of the beast, I shove my entire nose into his mouth in an attempt to check for the smell of the lotion. No scent. The inspection continues. No pasty white coating anywhere. Long sleeves are free of white lotion smears. The bottle threads are completely free of any lotion or wetness of any kind. It would seem that he didn’t drink any sunblock.
But, then why the bee-line for the toothbrush?
And even though I know better, I ask him, exasperated: “Did you drink this?”
“Yeah.”
Then, making moronic gestures like he’s deaf or something, I ask “Did you open this and (gesture) swallow it?”
“Yeah.”
“Did you just smell this and put it back down?”
“Yeah.” And now he’s starting to laugh at me.
After I compose myself, I decide that the little devil stuck his tiny little tongue into the neck of the bottle and got a teeny taste of the vile lotion and headed for the toothbrush. So I didn’t go to the ER– for the first time ever.
But I did call poison control. The woman said he’d have to swallow a ton of it to need medical assistance. She also said my voice sounded familiar! (No, I’m kidding on that one.)
But this was ‘C’s’ second run-in with the sunblock. Back when we actually needed sunblock in June, he sprayed it in his eye! (“Hello, Poison Control. Yes, it’s me again…”)
And in case you’re wondering why it was on the step, I had just retrieved it from the garage (when I was cleaning up for the gargage sale that I’ve now put off for a week) and was going to bring it up to the closet on the next trip upstairs. So stupid, I know…
I figure that ‘C’ has discriminating taste. He’d never settle for an ordinary bottle of Coppertone. He obviously prefers that ridiculously-expensive $38 tube of organic, healthy SPF 95 glue I was suckered into buying for him last summer.
Maybe next year we’ll take our chances with the sun? Hey, everyone needs some Vitamin D, ya know…
We Got the Funky Toe Blues… October 9, 2008
Posted by hopeauthority in Autism, Children, Health, humor, Parenting.Tags: antibiotics, Autism, infection, ingrown toenail, special needs
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“Make it feel better”, he said, as he stuck his foot in my face Tuesday night.
Now, words…any words… are normally music to my ears. But the tune was cut short when I got a look at this big, red big toe. And considering the very high tolerance for pain that ‘C’ has, I was concerned, so I probed further.
“Did you bang your toe?”
“Yes.”
“Did you you drop something on your toe?”
“Yes.”
“What happened?”
“Make it feel better.”
Ok, so I’m having no luck with this conversation. It’s not his fault, but it makes me crazy when I need an important answer…one for safety or health issues…and I can’t get it. And I know he knows the real answer.
So, I soak the foot. It looked about the same in the morning, but he wasn’t complaining or limping or anything, so I sent him to school. After school, the sneaker and sock comes off and, WHOA…
There was one funky toe.
Just great. The sun is setting and the Jewish holiday is about to begin… pretty much knocking out my chances of reaching any of our family doctors except my Italian gyno. Need I say more? But as luck would have it, the person I most needed to reach was working til 5:30, instead of his usual 8pm.
So ‘C’ and me and the SUV, flew to his office (35 minutes away) just in time for a toe check from ‘Dr. S’ (C’s chiropractor and all-around holistic autism expert healer and angel on earth). Diagnosis: infected ingrown toenail. Treatment: blood-sucking leeches.
No, not really. But they would have been a welcome alternative to the actual recommendation to soak it, poke it, restrain him and drain him. And repeat. Twice.
Sticking a sterile needle into that puss pocket attached to my little boy …and then squeezing it…was damn near impossible. And the second round of the barbaric treatment–when he knew what was coming!–was a Herculean feat by my husband and me. But it looks better today and we are hoping to avoid giving antibiotics as they wreak havoc on ‘C’s’ digestive tract and set us up for weeks of behavioral setbacks. One more “treatment” tonight and then follow up with Dr. S tomorrow.
I hope he understood me when I explained that I had to do this to make it better. Cause I love him from the tip of his cute little nose right down to…and including..that funky big toe.
How Closely Do You Watch Your “Typical” Kids? October 4, 2008
Posted by hopeauthority in Autism, Children, Parenting, special needs.Tags: Autism, Parenting, safety, sleepover party, special needs, typical child
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It’s 10 pm. Do you know where your children are?
Well, my son is asleep in bed, but my 10 year old daughter is at a sleep-over party. Well, for her, it’s actually a pajama party…since I won’t let her sleep over any friends’ houses. She got there for the pizza party and the movie…can stay for games and hang out in her pjs with her pillow and sleeping bag. But I will be picking her up at midnight so she can sleep safely in her own bed.
I don’t know where this “no-sleep-over” policy of mine came from. My friends think I’m crazy. I can’t help but worry when her safety is out of my hands. Short of home-schooling, I must deal with it during the day, but not at night. It’s enforced across the board, so no one gets hurt feelings. But they think I’m nuts.
Any animals in the house? Guns? Teenage brothers or their friends? Secretly weirdo dads (Hey, you never know …) ? What if there’s a fire…or a break-in?
I feel like I am barely hanging on to my sanity at times, juggling both kids and their needs. Focusing on that so intensely that the needs of my husband and myself rarely make the list. So, the idea that I could drop a ball and the unthinkable would happen…well, it’s unthinkable.
I have some great friends who are the parents of my daughter’s friends. Often, these parents behave in a way that is so different than I would, that I find their position to be irresponsible and/or dangerous. I can’t tell if its my paranoia or their living a normal life where people just trust that fate will take care of their kids even if they are what I feel is lax in their judgement or supervision.
Do I owe her the most typical childhood I can deliver, including the sleep-over experiences? Am I wrong to deny her this universal rite of passage? Or am I the only sane one?
This afternoon, before leaving my little girl at the party of one of her best friends, I asked the hostess mom how she planned to transport 17 people to the movie theater. Calmly and with a straight face, she replied that they’d likely pile in to 2 SUVs and sit on each other’s laps on bench seats and the seatbelts could reach around 2 kids at a time! OR Maybe she’d make 2 trips each way…leaving one set of kids unsupervised at either the theater or the house for a while!
Needless to say, I stayed. I transported several of the kids I know (my girl scouts) safely to the theater. I sat through Beverly Hills Chihuaha. And I transported them back to the party home. Safely.
It took an unexpected 5 hours out of my afternoon and evening. It took me away from my son. It made me angry. It made my daughter happy.
All I could think about while I sat in the theater was how all the other mothers were elsewhere enjoying their evening while I made sure their kids were safe. Me, the one who ran out looking like death, who has an autistic little boy waiting at home. And they have no clue that their kids may have been in danger. How is it that I was the only mom who bothered to ask at all?
What would it be like to go through life without obsessively worrying about the safety of your child? And why do I feel like their kids will be fine… but if I blink… unthinkable.
Palin Played the Special Needs Card October 3, 2008
Posted by hopeauthority in Autism, Election, politics, special needs.Tags: Autism, Biden, election 2008, palin, politics, special needs, Vice presidential debate
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Wait for it….Wait for it…
Well, it took almost an hour and a half. And things were really winding down. But she finally got to it. Palin played the special needs card again. Unfortunately, it was sort of lumped into the same hand with the son in the war card, the hockey mom card, the I-can’t-pay-for-college-for-my-pregnant-teen card.
And unless I missed something…which is possible since my attention was briefly diverted for a short time by my autistic son’s bath… the special needs card got quickly shuffled into the general education deck. But then again, Biden didn’t even hold that card in his hand.
My brain knows she (and Biden) couldn’t really spend quality time tonight discussing any specific plans to help our kids. It wasn’t the forum for that and we are but a blip on the radar at best.
But my heart really hopes she has a specific plan. And I hope that when she’s up at night with Trig, that she’s not just pacing, but that she is practicing “walking the talk”.
Because I have no intention of letting my child get left behind.
Gotta Love Autism’s Grannies… October 2, 2008
Posted by hopeauthority in Autism, Family, grandparenting, Parenting, special needs.Tags: Autism, grandmothers, grandparents, public speaking, special needs, tips on autism
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What a wonderful day I had yesterday in the company of about 100 sweet older ladies.
I was the guest speaker at a local Homemaker’s Club, made up almost entirely of moms of grown children, grandmas, and even some great grannies. And what a wise, wonderful lot they were! My own terrific mother-in-law was among them.
My lecture topic was Autism…what a surprise. But actually it was tailored to them and focused mostly on my Top Tips for Grandparents of Autistic Children.
Quick history: I am an only child and lost my parents 18 months apart, almost 15 years ago, during the “infertility years”…so they never became grandparents while on earth. My husband’s parents are wonderful and very involved in helping us as we raise our 2 children. We’d be lost without them. But I sure miss my own great parents, especially my mom. And I wonder what my life would be like if she were here.
So many grandparents want to help, but either don’t because they don’t know what to do… or they try, but do the wrong thing (and then suffer the wrath of the stressed out mom). So, using my “expertise” as the mother of an autistic child, I set out to give them some pointers.
Much to my surprise, about two-thirds of the ladies’ lives had been touched by autism. I was expecting only a handful when I posed that question before beginning my presentation. They were so eager and thankful to be educated about autism, to discuss theories on possible causes and therapy options, and to hear my suggestions on how they can help. You could have heard a pin drop during the hour-long talk. Heads were nodding. Tears were flowing.
I truly had them at “hello”.
Much more important than their warm applause was the way so many of these loving women approached me afterwards to share their own stories and offer me support.
Sometimes my life is so overwhelming… and I get so caught up in my own day-to-day challenges and feel so isolated. But not yesterday.
Yesterday, I experienced the rare and wonderful feeling of making a difference in the lives of many other families. Autistic families.
And I felt the love of lots of autism’s grannies… including a very special granny up above. It doesn’t get much better than that.
StimTalk 