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Autistic Boy Bowls a 300 September 30, 2008

Posted by hopeauthority in Autism, Children, Family, Parenting.
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Well, not really. But it felt that way…

Today is a school holiday for my son, but not my daughter, so it’s a mommy and son day today. In order to get ‘C’ to behave at the fair the other day, I promised him “bowling on Tuesday”, which he has reminded me of repeatedly.

He’s been bowling before a few times and its one of those few activities in public that he usually seems to handle pretty well… usually being the key word!  I took him to the place where we had his birthday party in March. I asked for the same lane: #18. Why?

Well, as the mom of an “eloper” (fancy name for the kid who darts off at every chance), I scoped out the one corner of the bowling alley that didn’t have an exit door and chose the last lane so he could only run in one direction. Also, no one else was bowling in that area, so we had 10 lanes between us and the poor unsuspecting family on lane 8.

‘C’ was awesome. He understands the idea is to get a strike. He stops at the foul line and flings the ball, then goes back to wait at the ball return and actually doesn’t put his hands inside it!  He is not yet a sore-loser… unlike his dad (who actually has bowled a 300!) He bowled with bumpers and rolled a 79 and a 72. All of his balls made it to the pins, so I didn’t have to keep bothering the workers to retrieve them. Of course, he didn’t have to wait and take turns since it was just us…

It was one of those amazingly smooth outings where you get to feel invisible. And that’s as good as it gets!

So the outing felt like he bowled a 300. Like the perfect game. The perfect bowling experience.

And on the spectrum 79=300.

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Autism Took a Day Off September 29, 2008

Posted by hopeauthority in Autism, Children, Family, humor, Parenting, special needs.
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Happy to report that autism took yesterday off! 

We decided to go to the fair as a family of four, despite all the potential “cons” on the list. It did take forever to get there, it did rain on the way, it was crowded and muddy…

And it was freakin awesome!

Somewhere during that long drive, or in that large crowd…we lost our autism!

Our son was great in the car. He ate nicely when we stopped for lunch. He walked nicely at the fair, either holding a hand or right beside one of us–never darted away even once. It was so cute to see him bury his little nose in my shirt as we’d walk past stinky animals or garbage cans. He was good while Mommy looked at her exhibits. He was good while we looked at his and his sister’s exhibits.

And he won 3 blue ribbons of his own! 

His face lit up when he got his plain snowcone. He didn’t need or miss the neon-colored sugary syrups that other kids pumped over their cones.  He sat there eating his plain ice chips like it was the best treat ever made! Moments like that live on in my mind forever, like a snapshot.

He was happy to sit in the wagon and watch the big rides that his sister went on, choosing not to go on any himself this time. I’ve learned not to try to push him to do things I think he should–or that “typical” kids would–when it’s just not that important. (Flashback to the forced carousel incident of 2 years ago-Yikes!)

He was happy just watching the rides and the people playing the rip-off games.  So I sat there with him for about 30 minutes…hugging, talking, sharing cookies and juice, making him quietly repeat “I promise not to grow up to be a “carnie”. Until a carnie came over to us.

This huge man with a grin to match walked over, and while handing my boy an inflated Nemo, said to me: “I can’t take it anymore. You two are so beautiful.” Seeing as I looked like death…as usual…you might imagine my surprise. And while my own mouth hung open for what felt like an eternity, my son made a perfect moment even better by saying “Thank you so much!” without skipping a beat! Making my jaw drop yet again! 

When my husband and daughter returned and we were ready to leave the area, I walked over to that carnie and thanked him again, adding that his kindness was especially appreciated because my son had autism and couldn’t really handle the games or rides just yet. Don’t you know that guy grabbed another toy for him! (Yes, I was a jerk to rag on the carnies.)

The fair was coming to a close. We had a peaceful carnival meal on a sticky, slanted picnic table that threatened to send us and our food rolling down a very big hill. ‘C’ sat for his meal. He sat while we retrieved our exhibits and ribbons. He was a trooper when it came time to pee and change into pajamas for the long trip home. He crashed during a Dora DVD and transitioned to his bed smoothly.

I’m sure autism caught up with us somewhere along the way, but at least we dragged its ugly butt home from the trailer hitch.

Going to the Fair? September 28, 2008

Posted by hopeauthority in Autism, Children, Family, Parenting, special needs.
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Another one of the annoying things about autism…deciding whether or not to take the child with autism to an event…

It seems we struggle with this so often, and I wonder if we are alone or not. Is it so easy to decide this? Is it not even a decision at all to most people? I feel like everyone else either leaves the child with a sitter all the time or takes the child with the rest of the family all the time. No in-between. No agonizing decisions each time.

We try to assess each situation and then decide, mostly taking just the needs of our typical 10 year old daughter and our autistic 6 year old son into consideration. If its an event geared for him, we tend to go. If its geared for our daughter, then it gets difficult.

On the one hand, we want to include him in everything and have every opportunity to socialize and have a “normal” life. And the guilt when we leave him behind, or when we split the family in half, is unbearable. On the other hand, there are times when our daughter has an important event, recital, concert, etc. and we don’t want our son to…I know this sounds awful…ruin it for her.

He doesn’t sit quietly for long at all. Sometimes it wouldn’t be fair to either of them to try to attend together. He’d be stressed and miserable. She’d be nervous that he’d act up and that’d make her miserable too. He also doesn’t do well in large crowds or with loud music.  We can’t bribe him with food, since his diet doesn’t leave many options in that regard. So he misses the 4 hour dance recital, and the 2 hour Christmas concert in church. And it kills us.

As I type this, we are agonizing over whether to take him to the big…BIG…fair in Connecticut today. The weather is wet (first problem), the ride is 3 hours each way, there’s school tomorrow and we wouldn’t get home til 11 pm (because we can’t leave til 8pm when exhibits can be removed at the fair’s end). The crowd will be huge, the ground muddy. He hates to hold your hand and won’t even let you put the stoller in the car, much less ride in it. A wagon is hard to maneuver in the muddy, crowded hills.

This fair is a family tradition. I started competing almost 20 years ago. My daughter started competing in the Youth dept 6 years ago.

Sounds like just she and I should go and leave the boys behind for a bowling outing of their own, right? Let the girls have a girls day out at the fair?

Here’s the catch: I entered a few of my son’s craft items in the fair for the first time this year. I feel like he should be there to see the whole thing…not that he’d necessarily “get” it.

Today, autism really sucks.

Palin (and Obama) Could Learn from New York Special Needs Advocates September 26, 2008

Posted by hopeauthority in Autism, Election, Parenting, politics, special needs.
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After the Republican National Convention, I wondered (see Sept 10th post) whether people with special needs children were likely to vote based solely on the special needs issue (like many folks who always vote strictly for the right-to-life). Had we become a similar “community”? And if so, would Palin’s promise that special needs families would have a friend and advocate in the White House convince our community to vote Republican?

A debate ensued. People ripped Palin’s past record on special needs issues (or lack of a record, as some claimed). To be fair, Obama’s record (as presented by his supporters) wasn’t outstanding either. Just because he has supported legislation in the past, doesn’t mean he will in the future. He has no personal interest. Now that Palin has her own special needs child, will she do more?

Are we really left to decide between “no past support but a motive for future support” vs. “minimal past support, but no motive for future support”? 

Both sides need to do more for the special needs community. They need to learn how to be our advocates. And they can learn a lesson from Parent to Parent in New York State (www.parenttoparentnys.org).

I learned about this great special needs advocacy group, from a flyer at SEPTA. I was curious and wanted to check them out.  So yesterday, I attended the first of what will be a monthly series of meetings, lectures, and workshops on topics of interest to special needs parents. The session was called “Ask the Advocates”.

For 2 hours, there was an open discussion, moderated by two amazing women with tons of knowledge and their own special needs “war stories”. This initial session had a small turn-out, and wound up addressing the particular needs of the handful of parents, advocates, and special needs educators in the room. 

Imagine being able to go to a place where people have walked many miles in your shoes and fought many battles you hope you’ll never need to fight. And then find them ready, willing and able to listen to your concerns and actually happy to help you. For free. This place really exists

Nice, warm special needs moms. Confident and upbeat. Obviously knowledgeable and experienced. Passionate about their work. Happy…really happy…at their jobs.  Ready and able to make a difference. Ready to make a plan for you to help you get what you need for your child. To teach you about the regulations and the programs. To put you in touch with numerous other resources if you need them.  

To be a special needs advocate…

Sarah Palin (and Obama): Are you listening?

Hey, Jim Carrey: I need a “nervous break-through” too! September 24, 2008

Posted by hopeauthority in Autism, Health, humor, Parenting, special needs.
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Tell me that you all didn’t just want to reach into the TV and scoop Jim Carrey right off Oprah’s set and into your den today? What a warm, loving, generous, and deep man!

But I was just kidding about hinting that he should come here and hold me while I have my own “nervous-break-through”. I have my husband for that. I am lucky.

Was Jim onto something when he said you have to have a “nervous break-through” in order to release the anger and guilt over giving autism to your child? Was Jenny McCarthy’s response “When you feel it, you heal it” on the mark? 

I loved what he said about how we must “take our expectation out of the equation” when dealing with children with autism. “Just be there. Try to connect.” And if it doesn’t happen right away, its okay. You just keep trying. You “go somewhere deeper.”

Can we clone this guy and send him out to educate our families and friends on how to accept/deal with/ love autistic children??!! He makes it look so easy.

And yes, I know they have the resources we don’t. There’s presumably no shortage of sitters and assistants, there’s time for yourself and couple time, there’s money for the best programs and schools, there’s vacations… Yes, many of the typical stress factors don’t apply to their situation.  But he still seemed like a white knight, right? 

So for all those women who haven’t yet been swept away by your own prince, realize that there are white knights riding around as we speak looking for a damsel…or a warrior mother… and her special child to love.

(Just watch out for those steamy piles life sends your way until you meet him!)

On Oprah’s “Mother Warrior” Jenny McCarthy… September 24, 2008

Posted by hopeauthority in Autism, autism diet, Health, special needs.
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I’m not an Oprah addict, but I did like her show when I was younger and didn’t have my kids yet. Today she covered autism.  If ‘C’ didn’t take an unexpected nap, I’d have had to wrestle the remote from him in order to watch today’s show with Jenny McCarthy and Jim Carrey. So Noggin went off and Oprah went on.

I completely agree with Jenny’s comments about vaccines. I believe we need vaccines, but we need ones that are safe for all children. And I believe that some children’s immune systems are not able to handle some vaccines and that for those kids, its possible that vaccines can trigger autism.

I also believe that some kid’s immune systems can’t handle certain environmental toxins, medications like antibiotics, or even foods. I think those assaults on fragile immune systems are the autism triggers for those children. It makes sense that the triggers would be so widespread, given the growth rate of the epidemic of autism.

I love that Jenny brought diet into her crusade to educate the public. I am a firm believer in special diets helping many kids on the spectrum, as well as ADD and ADHD children. In fact, I started ‘C’ on his diet long before Jenny even “came out” to help the cause. I can’t say enough about trying a diet…especially if your child has any gastrointestinal issues. You’ll likely know within a month if your child will benefit from it.

I started my son on his diet primarily for gastro health reasons. If it helped him recover from autism as well, that was to be considered a bonus.

And what a bonus we got.

‘Recovery” is a hot topic and often controversial term.  Can you recover from autism? Or do you just appear to get better and lose many symptoms, but the disorder is still always part of you?

It took about 18 months of healing on his diet, but’C’ no longer has the gastro issues. He sleeps through the night. Has formed stools. Doesn’t walk around hunched over or lean his belly into the backs of chairs due to stomach pain.  He can sit and concentrate on his work and play. He can focus better. He is happy.

He has not recovered…yet. But I am hopeful that he will someday. He truly gets better each day. 

So I wish all you “Mother Warriors” out there all the strength you need to battle the common enemy… And if you choose to add a special diet to your arsenal of weapons, I’ll be here to help you through when the going gets tough.

And it does. But it’s worth it…

10 Rules for Parents of Special Needs Kids September 24, 2008

Posted by hopeauthority in Autism, humor, Parenting, special needs.
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I went to my first SEPTA meeting the other night. That’s the Special Ed PTA. I had planned to go last year, but, well, you know how plans go…

So my “breakfast club” buddies were there, and some of the teachers we knew from the school. A Doctor of Audiology gave a great presentation on Auditory Processing Disorders (details to come), so that’s one more thing to consider testing for down the road.  (‘C’ would need to be more verbal for the test.)

What a great organization SEPTA is…lots of information, many programs for our kids, including several sports programs coming up which I plan to register ‘C’ in. Of course, I have no idea what he may do with a lacrosse stick, but, hey that’s what all that protective gear is for, right?

I want to share one of SEPTA’s flyers called: “Ten Rules For Parents of Special Needs Kids”. The rules as they were presented are in black and they are great. If anyone knows the author, tell me and I’ll give credit.  The accompanying red text is my twisted take on them after having little sleep and being my punchy self.

1. Take one day at a time. Use your energy positively. [One day feels like 72 hours at my house… Um, what “‘energy”?] 

2. Never underestimate your child’s potential. Encourage them. [Wow buddy, I’m lovin’ that impressionist wall mural you created with my lipstick. Way to go, little man!]

3. Find positive mentors who can share with you experience, advice and support. [Then abduct them, take their medication, and put them to work in your house.]

4. Be involved in appropriate educational and learning environments from infancy on. [Awaken your baby, breakfast, morning ABA, nap, 5 minutes to be a baby, afternoon ABA, dinner, tubbie, bedtime. Repeat daily ’til child gets call from center’s waiting list. Then, put baby on school bus for full day program. Remove sleeping baby from bus 8 hours later…while greeting arriving home staff. Shoo away neighborhood kids who want to play with your child. Repeat.]

5. Keep in mind the feelings of spouse and your other children. [Do walk gingerly around the feelings of your other children for they are the real angels in this world. But your spouse is fair game…STOMP HIM on occasion..he’ll appreciate the attention.]

6. Answer only to your conscience. You do not need to justify your actions to friends or the public. [“No, Mother. He’s not just a ‘late talker’. I really don’t think he should be in the wedding. Look Ma, he’s not gonna sit still and pose for a freakin’ school picture, so just get over it!”… Oh, and to the nosy woman at Walmart eyeing my son during a meltdown: “What the *%#&*! are you looking at, Lard-Ass?!” …Wow, did I really just say that out loud? ]

7. Be honest with your feelings. Remember, you can’t be a super-parent 24 hours a day. [Sure I can. Faster than a speeding bullet, more powerful than a locomotive, able to leap tall buildings in a single bound…no wait, that’d be my son…]

8. Be kind to yourself. Don’t focus continually on what still needs to be done. Remember to look at what you’ve already accomplished! [Sure, let me treat myself to the spa. I’d love to look at what I’ve already accomplished…but I can’t see anything past those piles of laundry, dishes, toys…]

9. Stop and smell the roses. You have gained an appreciation for the little things that others have taken for granted. [First of all, if I stop, I’ll surely drop. And, as for the roses…Hey! Where did all my freakin roses go???  Why…you..little…]

10. Keep your sense of humor. [Sense of humor?]

 

Martial Arts and Autism: A Winning Combination September 22, 2008

Posted by hopeauthority in Autism, Children, Parenting.
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I am so lucky to live in an area that offers opportunities for autistic and special needs children to participate in extracurricular activities, like a special needs martial arts class.  This class was not publicized… the few available spots got snapped up through word-of-mouth. 

Two years ago, when my son was 4, I enrolled him in a brand new kung fu program with 5 other autistic kids from his school.  The class rose to 8 at one point, then dropped to the 3 “regulars”. The guy who ran the class had a good heart…initially. My son loved him. The assistant who had ABA training (and was the reason we tried out the class and paid so much for it) dropped out after a few weeks, leaving the teacher to run the class without the proper background to redirect our kids.

Despite that, the boys did amazingly well. They stayed remarkably focused and quiet, did the drills, and acquired awesome gross motor skills. But they had their moments and in time, the teacher became frustrated. He’d cancel class and lie that there was a tournament. He kept raising the price for our kids and insisted on additional ans costly private lessons.  He thought he was the only game in town. But he was wrong. 

So the 3 “regulars” moved on. We found a new program. This time we struck gold. The sensi is a woman with 14 years of ABA experience! She was looking to start a special needs class, but needed a few more kids. (Seems like fate to me!)

Unlike the prior class, this one incorporates some playful time (with dance, parachutes, and hopscotch), along with the martial arts. This gives the teacher the chance to evaluate their gross motor skills and incorporate drills to improve them as needed.  It’s like OT and PT in a kimono!  (Actually the outfit is called a ghee, though I’m sure I’m not spelling it right!). 

As the kids get more comfortable, the playful part will be faded out. They may even mainstream to a typical class some day. Class will be limited to 4-6 kids. There’s an ABA trained assistant, too. And the price is fair and reasonable. No “penalty” for being special needs. No extra lessons.

The benefits of martial arts for autistic kids are amazing. The discipline helped ‘C’ focus. His balance and coordination is fantastic and last year, his gym teacher even marveled at his abilities. He beams with pride after a good lesson.  The social benefit is great, too.  Most of all, he is having fun.  And… bad mommy that I am… I pity the bully who may cross his path one day.

Both of these programs were started because of parents and their kids’ teachers seeking out a big-hearted martial arts instructor. We got to talking. Then it became “someone knows someone who…”. And finally, a program was born.

There are so many wonderful teachers and aides looking for this kind of out-of-classroom experience. Some parents have their home staff “shadow” at these classes.  My own son’s teacher assists in such a program inexchange for her own lessons. Martial arts instructors have a special place in their hearts for vulnerable children and they often want to help, but don’t know how to find the special needs students.  You have to find them.

So start searching. There’s a ghee waiting with your kid’s name on it…

Green M&Ms Make Me…Angry September 19, 2008

Posted by hopeauthority in Autism, autism diet, Health, specific carbohydrate diet, Uncategorized.
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Argh! Another dietary infraction at school. It seems ‘C’ got an M&M…from the floor, no less! And here’s the ironic thing… when the school nurse called my cell to tell me about it, I was eating breakfast with some of the moms from his class. And one of them sent in M&Ms that morning.

This mom is a new friend of mine. A few of us formed a breakfast club of sorts, meeting for french toast, bacon and support every Thursday morning at the diner. (Don’t know why we didn’t start this club up last year, but I guess we just had to get used to our own transitions to kindergarten.)

These women are already so important to me. We not only have parenting an autistic child in common, but our kids share the same teacher. Our shared experiences really empower us. We are becoming our own little “force” to be reckoned with. A little like “Don’t mess with the kids in class 1-5”. Wait til we join the SEPTA team next week!

So, the M&M thing really set me off… especially coming right on the heels of the “raisin incident”. And mostly because it set ‘C’ off–literally. It had chocolate, dairy, sugars, and artificial color/dye, just to name a few of the offensive parts. Who wouldn’t want one? Especially a little boy. Or the little girl who was the intended recipient of the candy.  In fact, I know several people who can’t push themselves away from a bowl of them. (Of course, they are my husband’s family and that’s a whole other post…)

So ‘C’ is not his usual self now. And how long that will last remains to be seen. (Bananas do him in for 10 days.) The regular ‘C’ is gone… replaced by a boy who waffles between maniacal laughter and bouts of sudden crying and sadness. He squeeks out “feel better”, but can’t tell me what hurts. His verbals are down.  He peed a little in his pants because he is not as focused. He peed a little in the tub for the first time in his life.  He’s even limping a little, but he didn’t injure himself. And so we wait…

So I’m mad about it all. Not at my friend. After all, she sent them in as a reinforcer to motivate her child. If ‘C’ didn’t have these diet issues, I can’t say I wouldn’t have sent them in for him, too. Though I do wish the kids, who are all advanced enough in age and skill, would all just move on to non-edible reinforcers, like stickers, playgound or computer time, or something similar and a little more toward mainstreaming. No one would argue that most kids would be better off without candy-especially in the morning.  (Of course I’ve always been put off by the food reinforcers, even when used on ‘C’ as a toddler. They always made me feel like ABA was dog-training. “Do this trick, and here’s your treat”)…

I am mad ‘C’ can’t have M&Ms. I’m mad other kids can–and do–in front of him. I’m mad that they are always at my husband’s family’s functions. I’m even mad at myself for eating them when ‘C’ is not around.

So, I guess green M&Ms make me mad. And to all of you out there with your minds in the gutter… they certainly don’t make me horny. What’s that  anyway?  Anyone remember?

Special Needs at the State Fair Competition September 17, 2008

Posted by hopeauthority in Autism, Children, Parenting.
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Ahhh. Fall…autumn. Call it what you will, but as soon as school becomes routine again, another big family tradition bursts on to the scene: Fair season! And nothing says autumn like a big ol’ agricultural fair.

Who could resist the midway with its games and rides? The food booths with their tempting smells. The animals (with their not-so-tempting smells). And, of course, the competitive exhibits, with their lure of the blue ribbon…

I’ve been a competitive baker and canner for 20 years. (Yes its me and all the little old ladies keeping the art of canning pickles and jams alive.) I’ve entered fairs in New York, Connecticut and even Nevada. I must have about 1,000 ribbons.  My 10 year old daughter has been entering for 6 years in the Youth competitions. She bakes, cans, and also does crafts… unlike her mom, who has two left thumbs which are usually glue-gunned together.

This year, I’ve decided that my son will enter. The fair is Sept 26-28th.  There are three craft items he’s made this year that are particularly beautiful. One is a drawing (which I framed), one is an egg-carton schoolbus (recycling category), and the last one is a menorah he made at school with toilet paper tube “candles” with tissue paper “flames” (the paper tube construction category). I loved that menorah when it came home from school last year and proudly stuck it right out there with the Santas and our nativity. It’s really a thing of beauty.

The challenge was deciding whether to check off “special needs” on my son’s entry form. The designation is apparently is only known to the judges, not to the public.

On one hand, I don’t want him to miss out on winning ribbons and the joy that comes from that experience, if his artistic talent is also “delayed” a bit when compared directly to his peers. So, I think I should level the field.  But on the other hand, I don’t want to have to always say he’s “special needs”. It’s a freakin painted egg-carton here.  So, what did I do?

I caved and checked the box… because I wanted to err on the side that won’t disappoint my son. But I can’t shake off that nagging feeling that I somehow sold him out by doing it.

So I’ll keep my fingers crossed. Of course, I have no choice as they are glue-gunned together…