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Happy Birthday to My Best Friend, Lisa February 28, 2009

Posted by hopeauthority in Autism, special needs.
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Today I celebrate the anniversary of the birth of my very best friend. We’ve been best friends since our college days in 1980.

Lisa and I are not alike in many ways, but are alike in the most important ones. We live on opposite sides of the country, but still talk to each other all the time. Sometimes once a day. Sometimes 14 times.

I celebrate her here because I know that the women who come here are among a rare group of people who actually understand the importance of friendship. And you will celebrate her with me.

When your child is diagnosed with autism, or some other special need, many of the people you thought were friends fade away. Even family can disappoint us.  The loneliness, isolation, and hurt is often unbearable. If you are lucky, you are left with one true friend who does her best to understand your challenging life and who listens with an open heart and mind.

For me, that is Lisa. 

And to underscore what an amazing woman she is, I will add that  she has supported me while carrying her own unbearable burden. She is raising her 6 year old son alone after the sudden and tragic death of her husband 20 months ago.

It amazes me how incredibly close you can feel to someone who lives a whole country apart.

Happy Birthday, BBF. I love you.

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Hiatus from HBOT February 25, 2009

Posted by hopeauthority in Autism, Children, Health, special needs.
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So, we’re taking a break for awhile from the hyperbaric oxygen therapy (HBOT) treatments we’ve been doing since early November. We have finished 35 of the 40 we had planned on doing. When we go back, we will do another 15… making our total 50. That’s how I can justify taking a break with only 5 left to go. Just add more.

Truth be told, the monotony of the HBOT routine and the havoc is has caused to our family life is taking a toll. Adding the long roundtrip commute to the hour and 20 minutes we lay almost motionless in the tank, makes each session a 3-4 hour ordeal. That’s a lot of time to carve out of the evening, 3-4 nights per week. Feels like we never see the other half of our family unit.  And let’s not forget all those Dora videos that wore me down. Even Toy Story is starting to get on my nerves.

So, we enjoyed the time in the Poconos. Enjoyed the waterpark without worrying about what damage we’d suffer if we got water in our ears and then went HBOT “diving” with its pressurization.

The benefits of this therapy continue to be obvious to others. We see Fabio getting better and better and want to credit HBOT for these rapid gains due to the large investment we’ve made emotionally, financially, and in time spent.

His vocabulary and focus and eye contact are really great. Major improvement in handwriting, pretty suddenly. He socializes better lately. Tolerates peers and shares better (not great, but better). But that is such a big deal because he was really unwilling and unable to share at all.  Talks almost non-stop now and uses longer phrases and makes thoughtful comments. And he is willing to stray from repeatedly watching the same friggin video over and over. I’ve managed to get him to watch …and start to request…Toy Story 2 and CARS. In the past, he’d meltdown over any change, even if a big reinforcer was offered as a reward.

The big test was taking him to the Poconos. I really don’t think he stood out as much as usual because his behaviors were mostly under control. Sure, he startled many a stranger with a sweet “hello” greeting right in their face. Not typical in these days of stranger danger campaigns.  And the big meltdown over wanting a second day in the waterpark… instead fo the lame ol’ indoor pool… was not pretty. But I still haven’t decided if I should be down about an autistic tantrum or elated about a typical kid’s tantrum. I’m inclined to think he was typical at that moment. Who’d pick a pool over a waterpark?

Don’t get me wrong. Fabio is autistic. I’m not kidding myself.  He is not recovered. But he is much better than he was before we began this therapy. And I am so happy and thankful for this blessing.

So, I’ve traded my 3-4 hour nights out with Fabio 3-4 night per week for my typical daughter’s new schedule: She started rehearsals for a play on Monday. It’s from 4-7 pm four nights/week for 6 weeks. Then a month of performances. I’m juggling that with the other 10 activities she has each week. Oh, and yeah. Schoolwork. And sleep.

I have a feeling that I’ll be looking forward to laying in that HBOT tank again, come April. Even if I have to listen to CARS every night… KA-CHOW!

Split Rock Resort: An Autism-Friendly Place February 23, 2009

Posted by hopeauthority in Autism, Family, special needs.
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Split Rock Resort is a little piece of happiness in the Pocono Mountains, Pennsylvania. Like what you’d get when you cross mainstream Dirty Dancing with the magic of Disneyland.

And when you have autism in the family, vacations can be a nightmare.

So when you find a place that is so accommodating to your special needs and so welcoming to your family and makes every effort to ensure that you have a nice time…you thank them by spreading the word.

Split Rock Resort has been around since the 1940’s, but just recently opened an indoor waterpark attached to the Galleria area of the resort. We never had to leave the Galleria. They had everything: restaurants, the waterpark, an indoor pool and hot tubs, ping-pong, basketball, a movie theater, bowling alley, ice-cream parlor…you name it.

What made the place special for us was Sam Arnett and his staff. The resort offers a blog (Talk2Me) direct to upper management. Before we went, I advised them (through the blog) of Fabio’s special diet and other challenges of autism, like waiting on long lines and sensory issues.

I got a prompt and friendly response from Sam asking for my reservation info, assuring me our room would be non-smoking, assigning our family a staff member for the duration of our stay, giving me the chef’s name and extension and the assurance he’d meet our dietary challenges, and giving me his own extension with instructions to call him upon our arrival so he could escort us into the waterpark to avoid any lines.

Upon our arrival, we were blown away to find that our room had been upgraded at no extra cost to us to a 2 bedroom suite with full kitchen. (I always travel with Fabio’s food anyway.) And, unlike the case for everyone I saw checking in too early before us, our room was ready for us. I know that was not a fluke. And while I am sure they are courteous to everyone, I don’t think the average family gets quite so many “just checking to be sure you have everything you need” calls. (Thanks Danielle and Stephanie!) Oh, and security came real fast when Fabio accidentally locked the inside door that connects the two big rooms that make up the big suite.

After Sam whisked us into the waterpark, we spent 5 straight hours in the water until the kids literally collapsed, wrinkly-fingered and water-logged into a heap. A few sizzling burgers and hot baths later, Fabio drifted off to sleep watching Toy Story (what else?). Then hubby and daughter hit the ice cream parlor. I ended the night with mint chocolate chip in the jacuzzi as they all snoozed…

Day 2 was essentially a repeat of day1. Another 5 hours in the “Pool Park” as Fabio called it. Another collapse into a state of elated exhaustion.

Smooth check-out. A visit to my aunt’s house overnight. Then back home to reality.

Lots of sensory things going on, plus the general disruption in the routine. Yet only one meltdown… which  happened when we tried to do the indoor pool instead of the “Pool Park” the second day.  Stupid me. What kid would want anything to do with a regular indoor pool after riding the waves in Hurricane Cove the day before?

It was an amazing time. I’m telling ya, there is some kind of magic in those mountains. Thanks for the memories, Split Rock!

Autism Vaccine Court Blow February 13, 2009

Posted by hopeauthority in Autism, Health, Parenting, politics.
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Most Americans are fed up with the government… and have been for many years. We don’t trust politicians or attorneys. In fact, I bet lawyer jokes outnumber “Yo mama’s so fat…” jokes by a margin of 10:1.

Or maybe it just feels that way to me since I happen to be a lawyer.

Anyway, it was easy on Thursday for many people …especially families with autistic children…to hate the government and its lawyers. That’s when the “Special Masters” appointed by the U.S. Court of Federal Claims in Washington D.C. ruled that… in the first three “test” cases on behalf of autistic children… the petitioners failed to demonstrate (a) that thimerosol (the mercury-containing substance once contained in many vaccines) can contribute to causing immune dysfunction, or (b) that the MMR vaccine can contribute to causing autism. 

Because I’m an attorney, I’ve often been asked my opinion about the outcome of the famous trials. You know, the ones in the headlines. The Amy Fisher/Joey Buttafuoco mess. The OJ Simpson fiasco… And my policy has always been not to comment.

The reason I don’t comment is because I believe that unless you sat in that courtroom for every minute of that trial, personally reviewed every piece of evidence, and took part in the jury’s deliberation process, you don’t have all of the information necessary, nor the mindset, to make a fully-informed decision on the issues of the case.

And despite the fact that my emotional “mother of an autistic son who regressed right after the MMR shot” -self is silently screaming otherwise at the moment…my rational “professionally- and painstakingly-trained to see a potential lawsuit in any situation attorney”-self has to believe that the justice system if fair. Even when the results don’t seem to support that.

It’s one thing to “know” something. It’s another to be able to prove it. I am not surprised that since our children are all so different.. and the onset and severity of their symptoms are so different… it was difficult to prove the link to the vaccine.

While I am not anti-vaccine, I am not convinced that our vaccines are safe, nor am I in agreement with the schedule with which they are administered. Too many too quickly. I understand that upon learning of the court’s decision, the Chief of Infectious Diseases at Children’s Hospital in Philadelphia, Dr. Paul Offit, actually proclaimed it “a great day for American children.” To that I reply, “No, you dumb ass. The day we can cure this miserable disability will be a great day for American children.”

In Fabio’s case, he regressed right after the MMR. Instead of the second dose, we opted for titers…bloodwork to show whether he was immune. What we learned horrified us. He had…and still has…an enormous amount of that vaccine in his system. He is flooded with measles! His damaged immune system was not able to process that vaccine in the manner a healthy, normal child’s immune system would. Needless to say, he did not need…nor will he ever get…that second shot. His DAN doctor signed that it was not medically necessary.

I really don’t try to preach much here but his is important info so I am going to strongly suggest that all parents consider two things: 1) break up the MMR into individual shots and spread them out if you are going to take them and 2) if you take the first MMR, get titers before taking the second one…plus titers for all other applicable follow-up vaccines… to see if your child is immune already adn doesn’t need the follow-up!

We all have our own opinions on what may have caused our child’s autism. For me, I think there’s probably a genetic predisposition to get autism and that the trigger…or combination of triggers…is different for each child. I wonder if my infertility treatment is a factor, or anything that happened in-utero, the pre-term labor, the premature birth and its related under-developed immune system, the onslaught of vaccines, infections and anti-biotics, the diet of foods he could not digest which further damaged his gut and immune system. Each of these things may have pushed Fabio just a bit closer to the edge…made him wobble a bit. Made him stumble. But each time, he managed to pull it back together. Until the final shove came full force. The MMR. And over the edge into autism he went. That’s how I see it.

Thankfully, one of our local Assemblymen, Marc Alessi, is continuing to fight on behalf of  autistic children like my son by reintroducing a bill that would allow New York parents to skip vaccinating their children on “philosophical grounds”. 

Maybe government can be trusted. Maybe some politicians are really fighting for autistic children. Maybe there will be change. Didn’t somebody pretty important recently say “Yes we can”? Now if only we could get the doctors on board…

Hey, Dr. Offit. I’ve got one for you: Yo mama’s so fat…”

I’d love to hear what other’s think caused their child’s autism of special needs issues.

Autism and the Octuplet Fiasco February 11, 2009

Posted by hopeauthority in Autism, Family, Health, Parenting, special needs.
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Last month, the headline story that had rumors of autism swirling around it involved the tragic death of John Travolta’s son. Some people asked me my opinion on it, but I opted not to post on it because it seemed too raw. Too private. Too sad.

This month, we have the octuplets birth. And the autism footnote to the story is that at least one of the mother’s previous six children has autism. Two others may have other special needs issues. Now she has eight more children. What are the odds that one some several of them may have special needs or autism as well?

Am I the only person who can’t stop thinking about that one child with autism?

Do you think the press will get to that point some day? Maybe on the 15th interview? the 20th? If she’s spending 45 minutes per day holding each newborn…6 hours…and she wants to go back to school…and she likes to sleep…and she plans to work… How much time is left for the child with autism?

How do you adequately parent 14 children in only 24 hours each day?

This is no doubt a hot topic for debate. And while it may be private, it doesn’t rise to the same level as the Travolta death. There is a sense of “fair game” here. Like the mom brought this on herself. And she actually did, by her deliberate actions and conscious choices. I don’t hate her, but much of the public does.

As the mother of two children… one with autism… and as a woman who did in-vitro fertilization seven times in order to have that family…and as an only child myself, I couldn’t let this story pass without comment.

I am all for women taking heroic measures to have their families. I understand the temptation to throw caution to the wind and transfer back more embyros than the doctor recommends (especially after numerous prior failed IVF attempts). In my case, I’d lost both of my parents prior to having children. So if anyone desperately needed a “connection”, it was me.

So why don’t I have 14 children?

Because I love the two children that I have. And loving them means I want to share a lot of my time with them. And because one of them has autism, he needs a lot of my time so he will be the best that he can be. And she needs a lot of my time so she will not resent her brother taking up so much of my time. And they both need a lot of my time so I can raise them to love and care for each other.  So, I would never do anything to risk my life and leave them without a mother, or to add such a large number of siblings at one time that I’d effectively leave them without a mother anyway. I put their needs first.

When my daughter was born, I fell in love instantly. She was everything I ever needed. I was happy. Like some moms, I actually couldn’t imagine loving another child as much as I loved her…until her brother came along. He was perfect. Family complete.

Sure, autism made it easier for me to get through that window of time where the biological clock is ticking loudly that “it’s now or never” for another child. But historically women stop having children after having a reasonable number of them. Or they may even stop sooner if there are health issues to consider.

It’s hard to find the positives in this story. We want and need the right to pursue a family through medical technology. We want to choose how many embryos we put back.  But there is something wrong with a single, unemployed mother of 6 children…at least one of whom has autism…having octuplets. It seems reckless to me.  Everyone is bitching about the price to the taxpayers…But what is the price to the child or children with autism?

And while I’m ranting, is anyone else just blown away by this woman complaining on national TV about how her own mother wasn’t really there for her emotionally? Hello! Whose house are you freeloading in with your 6…soon to be 14… kids? Who took care of them when you were on bedrest? Is that any way to thank your parents? No wonder they stopped at one.

Do you think state agencies should follow the family to determine whether it’s in the best interest of the autistic child …or any of those children…to remain in her care?

Any opinions to share?

Autism Moms: Working or Not? February 10, 2009

Posted by hopeauthority in Autism, Family.
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The vast majority of mothers of children on the autism spectrum or with other special needs issues can’t/won’t/don’t work outside the home. The reasons for this are many.

Some moms have young ones with morning and afternoon in-home therapy sessions. Others homeschool. Some unsung heroes are literally taking heroic measures each day just to keep their severely afflicted special children in their home settings.

Autism is a 24/7 job.

Even parents of children in full day programs have the challenge of how to handle sick days and school vacations and holidays.  The lack of flexibility life with an autistic child provides seriously restricts the mom’s ability to get a job. She may be limited to temp work. Part-time work. Seasonal work.

From what I’ve seen, the lack of reliable, trustworthy and specially-trained child care is the primary reason most special needs moms… who want to work… don’t work outside the home. 

Now I’ve done my time on the train to the city with my 10 hour workdays and my 4 hour roundtrip daily commute, the business suits and pumps (Did I mention that I freakin hate shoes. Really.) I am no stranger to the long workday. I loved the interaction with most of the people. The annual Christmas Party, the raise and bonus. And the weekly paycheck. Ahhh. Remember the paycheck…

But with 81 year old inlaws who generously offer to get the kids off the bus for me once or twice a week (tops!), and no one else I can rely on to pick up the babysitter slack, I am limited in what work I can do…despite my various degrees and experience.  And don’t think I don’t know what you’re all thinking about the inlaws’ age…I have nightmares about it.)

I suspect many of you are in the same boat. You’d love to work, not only to get out of the house and interact with adults, but also to help out with the finances in this tough economy. And let’s not forget about how expensive it is to have autism or special needs in the family! (Fabio’s diet alone is a part-time job…and costs a part-time salary, too!)

I am a freelance writer who assists businesses with web and traditional marketing. I can meet clients during school hours and can do almost all of my work at home at my convenience.  I’m also an attorney and title closer who closes real estate deals…very part-time in this market. Actually, almost non-existent.

How about you?

How do YOU juggle working and being a special needs mom? What is the hardest part of it all?  And what kind of work do you do?…. OR…. If you don’t work, but want to, what is the major roadblock that is in your way?

100 Days of School February 9, 2009

Posted by hopeauthority in Autism, autism diet, Parenting.
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So, this week we celebrate the 100th Day of School. Around here, it’s a big deal, but …thankfully… it is only celebrated by the first graders. (I know there’s other states that have each grade celebrate it each year.)

When my typical daughter had to do her project, we did this pretty fancy thing involving painting a wooden plaque, screwing 4 hooks into it, threading 25 colorful beads onto 4 wires (100 beads), attaching the strands to the hooks, and placing sticker-letters on the plaque proclaiming her name and the school name and “100 days of school”.

Tonight’s project with Fabio was simply to glue 100 things onto the big piece of construction paper the teacher provided with a big “100” in the center. Easy, right? Well…

First I made the mistake of taking Fabio to the craft store to pick out what he wanted to glue on. I had already decided on those foam stickers that you just peel the back off and they stick on anything. If I had to deal with glue for 100 items, I’d surely have passed out from the fumes…

So, Fabio was a pain in the butt in the craft store. It didn’t help that I had a return to do there first and the clerk was slow as molasses.  Fabio’s rarely good in the stores. Which is why I rarely bring him. Which is why he isn’t good there. Vicious circle.

So we grab the foamies and get home and get started.

By the time we got to about 40 items, I was losing him. And we had 60 to go. Lots and lots of re-directing later, and the masterpiece is done! It’s covered with fish, alligators, turtles, frogs, dolphins, penguins and lots of stars!

The thing I hate more about the 100th day of school celebration than the project is the traditional McDonald’s Happy Meal party they are having in Fabio’s class to celebrate on Thursday. ARGH!

The form came home last week requesting $4 if you are participating. Fabio can’t eat anything that I don’t make for him…so McDonald’s is OUT. But how do I handle this? I can’t have him eat his regular food when his class is all eating happy meals. Do I keep him home?

So here’s what I came up with. On Thursday, Fabio will have a happy meal…sort of. I bought one this weekend and kept the McNugget container, the cup/lid/straw, the apple dippers bag, the happy meal bag, the boy toy. I will make him nuggets for the teacher to heat up and sneak into this container, a peeled and sliced fresh apple to sneak into the apple dippers bag, his own juice to put in the cup. His meal will look like the others. I think it’ll work.

Its times like this that it’s so hard to have a kid on the spectrum on a diet.

Hey Howdy Hey! HBOT Update: 30 Dives February 5, 2009

Posted by hopeauthority in Autism, Health, special needs.
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30 down… 10 to go. Hyperbaric Oxygen therapy (HBOT) is moving along.

It’s all a blur when you look at each dive on its own merits. The repetition is both comfortingly familiar and excrutiatingly boring. The same days and times each week. The same road taken. The same CDs in the car. The same DVDs in the tank. The same tech and secretary. The same scrubs worn. The only variable is whether we’ll be in the right tank or the left one.

It’s easy then to fail to see the changes that are happening. It’s like when someone who hasn’t seen your kid in a long time sees him and exclaims “Look how tall he’s gotten!” Since you see him each day, you tend not to notice the growth. Well, HBOT’s like that.

I’m no longer counting the length of his utterances. I just notice that he is more talkative in general. More verbal. More words strung together. New words in the vocabulary. Still some scripted speech, though used appropriately in real life situations. And some plain normal speech, too. And yes, an occasional profanity…also in context. Not quite conversational yet, but getting closer, with minor back-and-forth exchanges.

The big thing to come of this last group of ten dives would be his teacher’s decision to begin mainstreaming him a bit in school. This is due to Fabio being much less anxious and much more cooperative (less tantruming) at school. The teacher said everyone notices this change in Fabio, including the principal. It’s good to hear that, especially since I think his teacher is resistant to acknowledging that non-educational efforts are effective.

He has been a bit more difficult during the treatments the past 3 times. Gives me a hard time getting in the tank and pushes my buttons when we’re in it too. It’s unfair of me to expect him to be perfect just because he has been for the first 27 dives. Yet it’s hard when he’s not perfect.

Oh, perhaps the coolest thing that happened during the last 10 dives was Fabio giving up those freakin Dora DVDs! Yes, Dance to the Rescue and World Adventure have happily been retired after 8 and 19 viewings, respectively. Any health benefits I may have received from being in the tank with Fabio were surely undone by the extreme stress of having to listen to hours and hours of Swiper. no. freakin. swiping.

We’ve moved on to a slightly more age-appropriate level of entertainment… Disney movies. Specifically, Toy Story. Sure, I bribed him with his latest obsession…Kooky pens…to get him to watch it the first time. But since then, he’s never looked back.

So who knows how much farther HBOT may take him in the dives to come?  We will just continue or journey in to the unknown…

To infinity and beyond.

Mainstreaming Starts Today! February 3, 2009

Posted by hopeauthority in Autism.
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So this is one for the record books.

Today, Fabio officially starts mainstreaming in school.

Nothing major, of course. We’ve all agreed that since his behavior and language has improved so dramatically in the past few months (possibly due to HBOT) that we’d try mainstreaming him into a typical gym class first and see how he does. Two days per week for now.

Fabio loves gym. He’s good at it. He loves the teacher too. And she has a soft spot for him. But he is an anxious kid, so I am worried sick all day here wondering how it’s going to go.

There are two girls in his class who do some mainstreaming, so I know to expect the worst for awhile according to them. They mainstreamed in subjects like circle time, recess and lunch, and I think science. Mainstreaming is done by taking the child into a typical class for a period at a time, a few days each week.

I wanted to experiment with mainstreaming before Fabio’s upcoming April annual review, so we could have it on his IEP if it’s working out well.

If anyone has any tips on how mainstreaming can be made less stressful or more successful, or would like to share your own experiences with mainstreaming efforts, please feel free to comment.

I will let you know how it goes. And will post my own tips when I figure it out!

Wish us luck!

It’s Groundhog Chili Time! February 2, 2009

Posted by hopeauthority in Autism, humor, Parenting.
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That’s it. I’ve had it with this tradition of pulling a hibernating hairball out of its hole to determine whether we get an early spring or …as is always the case… another six weeks of miserable winter.

What do they think the nasty critter is going to do? Reward us with the gift of an early spring? And let’s not even get started on how they can possibly know what the groundhog sees…

Why every guidance counsellor on the planet isn’t pushing all students to become weather forecasters is beyond me. It’s the only career where you can be wrong 90% of the time…and still keep your job. They rely on fancy doppler technology and cranky groundhogs.

Anyway, my autism point as it relates to Groundhog’s Day is that I hate winter and the way the freezing cold for months on end limits Fabio’s activities. Sure, I like the first snowstorm (especially if it falls on Christmas Eve). The first snow day. The first sleigh ride. But then…

I miss the warmth of summer. The pool and the beach. The fun in the sun. The ability to stay outside for hours with the kids. I like how Fabio can burn off so much more energy in the summer. And how it it’s just plain easier to deal with everything without snow boots, soggy winter gear, and the ever present salt, sand, and muck. The sniffles and sneezes. The stir crazy weekends.

So this is a call for all the great creative moms (and dads) out there to help each other out and answer the following question:

What do you do …inside/outside/and away from home…when its snowing outside to keep your autistic and typical kids busy? 

We need to pitch in and help each other survive the remaining six weeks of winter. So let me start things off.

I love to cook with my kids. And in the winter, I love to use the crockpot. It’s so easy. Just chop up a few veggies and toss them in with just about anything…

…like a groundhog or something.