Autism Watch: 2007

Posts Tagged ‘asd

Autism, ADHD Share Genetic Similarities: Good article by Fox News.com and the title gives you a big clue what it’s about 😉     I saw this one in a news feed earlier today, so I googled it and found it’s referenced in quite a few blogs, so you may have already read it. That search then made me realize, I haven’t done a news entry lately, so here you go.

Autistic Maple Grove Boy Wins Battle for Treatment Coverage: a StarTribune article that’s inspiring to see as it’s a success story, but my first thought was “Why are we as a community still having to fight for this??”

Progress slow but sure in fight against autism: The Inquirer and Mirror writes a piece that makes me say “Really?” Where is this hope at the end of the tunnel? My son already has autism. We already get zip for help from any foundation or organization that all these funds raised go to, and because I work, we don’t qualify yet we can’t afford all the therapies out-of-pocket. I don’t want my son “cured.” I just want him happy and learn to regulate, and that won’t happen without services that the average person can’t get.

Missing Middletown Teen Reunites With His Family: Killingworth-Durham-Middlefield Patch article (whew, way too long of a name there). Feel good piece, as too often, these missing kids are found too late. SO nice to hear of a positive ending! For those who think Asperger’s and/or ‘high-functioning autism’ isn’t so bad, ahem, it’s still autism. Speech doesn’t necessarily cure much.

Autism Makes Multi-Tasking Difficult: ThirdAge.com article. To whoever did that research and came up with earth-shattering news? Thanks, Captain Obvious.

That’s it for today. IEP now set for next Tuesday…can we make it the remaining 3 days??

I opened up my blog page, thought about the title, and then realized, why am I thinking on this? I’m definitely over-thinking this. So I decided to cut to the chase: this entry is about school and autism. Voila, the name of the entry.

First, the disclaimer: I’m tired and lacking creativity.

I slept well last night. Went to bed at 11:30 after watching the two-hour finale of Masterchef (yay for Jennifer!) and I passed out as soon as the TV was off, but 5:30am comes early. My mornings consist of getting BB ready for school, signing in to work, working, taking him to school, and working until I pick him up. Then I work another 30-45 minutes or so. I’m used to that, but when you’re dealing with your school every single day, and dealing with your child venting about school the rest of the time, it’s tiring. It sucks your creativity like a Dyson picks up dog hair. Sorry, BB’s service lab sheds like you wouldn’t believe so it’s an analogy all too in-my-face.

Moving on…these last couple of weeks have been the proverbial rollercoaster. We have a great day and things look good. The next day blows big chunks and he doesn’t ever want to go again, once the anxiety-induced migraine goes away and he’s willing to talk as opposed to crying and yelling. Fun stuff.

IEPs are good things to have. Nice handy legal documents that explain how things should work and give people guidelines. But much like a restraining order and a persistent abusive ex, it’s only a piece of paper that totally depends on people to follow it.

One teacher/administrator who doesn’t feel the accommodations are right, doesn’t want to do the accommodations, or just has assumptions about your child and the diagnosis can blow the whole thing.

Long story short, that’s where we are right now. We’ve got a wonderful team around us, albeit a busy one, and we have one person in particular who gets BB. And one person who doesn’t…and doesn’t seem like she wants to.

BB is burned out. I’m burned out. Dh is burned out. We’re at the crossroads of: This is Your Last Chance to Make it Work Road and Homeschooling Highway. Not a place I wanted to be but then again, I never wanted to be a part of the autism club either.

BB is happy tonight. He is positive towards tomorrow, so I will be, too. It can be a hard thing to tell yourself: think positive, don’t let the last two weeks of hassles get you down, shrug it off and have faith. But I’m trying. Trying hard, and letting BB lead the way. He teaches me more than anyone I’ve ever known.

….there are things you just don’t say to someone who does. Especially if you’re a close friend.

Today, someone crossed the line — unintentionally, probably, but thoughtless, nonetheless.

“Don’t blame vaccines. My two girls got them and they’re fine!”  Posted to my FB page.

My mental response? Uhm, yep, your two children being fine most definitely means that the thousands of us whose children were affected can move on to another focus. Oh and you’re super fortunate they’re fine, too! Mine isn’t, but thanks for the kind thought, Mrs. PharmaScientist!”

So I couldn’t really say that in response. My real response was probably much kinder than it should have been. I had to remind myself that people who don’t experience things are ignorant of what it’s like for those of us who do, and therefore, they’re likely ignorant in the area of research/information that we’ve had to immerse ourselves for a decade. It’s not their fault, we can’t expect people to understand us if they’ve not been where we are, but I don’t know zip about Angelman’s Syndrome, scleroderma, cerebral palsy, and a whole lot of other real medical issues, and I wouldn’t tell a mom of a child dealing with one of them how she should feel. I wouldn’t begin to think I knew more than her, or not even enough to comment on it. Even if she made some outrageous comment, like “Don’t breathe air, it’ll cause xx..” I wouldn’t respond in any way unless it was supportive, because I’m not in her shoes. I didn’t spend years having to live around that ailment, I haven’t researched on how to give my child a better life, how to prevent further problems, or how to possibly prevent my grandchildren from being affected, and I don’t know the passion she feels about what she sees as to the cause of the illness. So why would someone do it to anyone? I can’t be the anomaly here — or as someone else put it, as the parent of a special needs child told me, people ignorant of the topic shouldn’t begin to tell those of us who aren’t ignorant of it how to feel, but they’re ignorant of that fact in the first place?

Over the years, I’ve learned that we can’t worry about convincing everyone to believe our feelings; it’s futile and will cause stress. People are entitled to their opinions.  However, we can expect people to respect our thoughts. Random strangers, eh, not so much, but someone who is/was close to you, yes, there should be an expectation of support there…or an expectation that they will quietly agree to disagree instead of being inflammatory.

Off to calm BB, he had a flip-out when I told him I wasn’t going to allow him to pay a child at school for being a friend.

We’re a family that’s big on Christmas. BIG.  B I G. We put up two trees, garland, the family of Christmas teddy bears, wall hangings, nativity sets, candles, snow globes, and that’s all just inside. The outdoor of the house is covered in enough lights to mix us up with an airport, and we’ve got baked goods stocked up to last through New Year’s. Christmas carols play in the car and we have memorized the channel numbers of the Christmas music television radio station. We write lists of things to buy, things to make, and we take time off work to shop and prep. Christmas eve is a routine — read T’was the Night Before Christmas, the Nativity Story, and put out cookies. Then stay up late wrapping presents to surprise everyone with on Christmas morning. Christmas day is a relaxed event, everyone hanging out testing their gifts, snacking, eating, snacking, visiting with drop-in guests, and just having fun with everyone around. It’s not just a day, it’s an event, a whole month preparing for The Big Day, and being thankful for the reason for the day in the first place.

So, imagine our surprise when we move and find that not just sporadic homes put up decorations, but they ALL do. Nary a house can be seen without some type of Christmas decor. The little town we live in is covered with stars and lights and has an annual Christmas tree lighting ceremony. You hear “Merry Christmas,” not the ridiculous “Happy holidays!” But we’re also surprised with the lack of holiday parties outside of church. Our open house was a success, and the fact we put wine, aka alcohol, out on the counter didn’t seem to offend anyone. (Out here in the South, you either like alcohol, or you hate it. There are people who won’t enter a home if there’s alcohol present…for real.) Good thing we had that party though, it may be the only one we get to attend!

During the open house, BB hid in his room. The entire time. Getting him to come out and say hello was even hard. Luckily, people understood him and no one seemed put off. It’s our house, so we’d have taken care of that anyway, but it’s nice to not even have to worry about it. Doesn’t happen enough! Let’s count that holiday difficult #1. Parties.

Holiday difficulty #2: Santa Claus. BB still believes, but a lot of other kids his age don’t, and some of them have told BB about it. He’s questioned me numerous times, but seems quite content with my responses, though now and then he throws in a “But Santa’s you anyway, Mom.” I still think he believes though, or at least really, really wants to. A couple of families we’ve run into, the children don’t believe and the parents talk about it openly in front of BB. I’ve had to quickly say “Well, Santa still comes to our house..” so the parent gets a mental kick on the backside to watch what they say. (And I really want to just say “duh?” to them but I bite my tongue.)

Another holiday difficulty is illness. We’ll call it #3, #4, and #5. Not only does it mean that they can’t go to school and might therefore go over the allotted days of illness allowed by the school district, but when they are home, it’s an interesting time. It can throw them for a serious loop, and as a result, us, too. Not all cold meds are good for them, tylenol for fevers is not recommended, and they are even more demanding than usual…and you can’t help but cater to them, because they’re sick and soooo darn cute. Your Christmas baking gets put off, your Hallmark holiday movie gets paused, and your hot cocoa gets cold. Nothing else matters.

Holiday difficulty #6 is the chaos. There’s not necessarily a routine. Things pop up, people drop in (well, you hope they do at least…since this move, we’re still not as socially involved as we used to be but we have hopes) and you come up with things to do on the spur of the moment. Without time to prep BB, well, you know the drill. Imagine earlier this week when my younger daughter sang in a Christmas concert. BB was just starting to get sick, and we knew if we told him way in advance, he’d flip. So we chose for the Last Minute Flip. “WHAT??? WE’RE GOING WHERE??? WHEN??? NOW???” Yep, it was pretty. But the promise of the ability to play with his DSi while waiting for it to start, and subsequently through it, as we were front-row and it was loud, won out and he was fine. Yes, fine. Well, he did fuss halfway through but so did dh..the show was long, and I think the teacher somehow mistook the concert for a church service. (I’m sure there were some phonecalls post-concert, I’ll leave it at that.) He ended up making it the whole way. And so did dh!

And let’s not forget #7. I bet this is a favorite amongst many of you. All the holiday crap snacks available. Everywhere we look is a bowl of candy (red dye 41), a box of chocolates (caffeine), a candy cane (high-fructose corn syrup) and more of that red dye 41 as far as the eye can see. Christmas is the month of red, so you can’t leave it out. It’s in coffee, donuts, mashed potatoes..okay, maybe not the mashed potatoes but pretty much everything else. They mine as well just put the big jar of red dye 41 that I actually saw at the IGA out on the counter. Yum. Melatonin, you are blessed amongst over-the-counter supplements.

Autism brings on a lot of difficulties year-round, so I’m sure my list could be a lot longer, but I’m working on — after I get over this nasty sinus/cold I’ve been fighting the last three days — looking beyond the difficulties. It’s Christmas, and there’s a whole lot to be happy about.

Recently, a non-internet-user (yes, they still exist!) asked me why I blog. She couldn’t understand why a person would write their personal stories in such a public place for strangers to see. I understood her question, because the way she phrased it was basically the bottom line — my life as it pertains to autism is indeed written out for the world to see. But I’m not sure she understood my response.

To me, writing this blog has been a form of autism awareness. It’s a way to reach out to other parents who may be dealing with similar situations, and to help the world see how profoundly autism can affect a family and a community, even (and pardon the term) “high-functioning autism.”And let’s face, it’s a place to vent at times when there’s no other recourse.

The media so often shows the most severely affected children with autism. So many media pieces are written about the non-verbal and the cognitively affected that there are still people in the general public who are unaware that a child can have autism and speak and not sit rocking in a corner. My blog is a way of sharing that autism can hit anyone, all sexes, all ages, all income levels, all races, anyone. One in 70 boys is now thought to have a form of autism, and 1 in 110 children overall are diagnosed with autism spectrum disorder. Staggering numbers.

When I write, I trust the reader. I assume that people read because they’re interested in autism, and when they read, they remember they’re reading about a sweet, beautiful, extremely intelligent nine-year-old boy with the most gorgeous of eyes, a penchant to hug mom spontaneously and an extreme innocence about the world. Maybe my trust is naive, but I’d like to think that anyone taking the time to read my sometimes very long entries is keeping in mind that they’re reading about a child whose mom loves him like readers love their own children. If someone’s looking for someone to mock, go elsewhere. Don’t believe in my views? That’s fine, that’s your prerogative, but there are debate boards on the internet calling your name. Just like you wouldn’t point at an autistic or otherwise different child in public and laugh at his illness or uncontrollable tics, it’s not okay to do it here.

I’m one of millions of bloggers in the world, people who do so for lots of different reasons. I’m glad my friend asked me why I blog, as it gave me some time to really think about the why and not just the what. I hope to encourage people that autism can improve, and that autistic children are amazing individuals who deserve our love, time, respect and compassion. Autism is just a different way of life, not a bad life. A diagnosis is hard, but they’re still your child and you will rise to the occasion. I wouldn’t ask for an autism diagnosis, but now I’m a better parent than I was before. I’m a more accepting individual and when I hear a crying child in public, I don’t plug my ears and get all haughty about my personal experience being inconvenienced; instead, my instinct is to see if mom needs help and to tell those who are complaining to be quiet and grow some decency. My child is an amazing blessing, and his autism has given this unexplainably unique view on the world that is going to make this world a better place. Autism may be a lifelong condition, but there’s hope and as their primary advocates, we parents owe it to them to never forget that. It’s so uplifting to read the stories on the internet about the strides children and parents are making, and I hope no one ever gives up on sharing it for the masses to read. Together we can show everyone that our kids are worth it.

Just to start out, I’m going to say no. Categorically, no.

I’ve been a part of the community now for almost six years. I didn’t want to be a part of the community, but I am. On most days, I’m glad to be a part of it — it got me through some very difficult days, I’ve made some wonderful friends (online and offline) and I continue to check in for resources and to get/give support as necessary. On other days though, I’m disappointed.

If you’ve read my blog at all, you know I speak my mind. Autism tends to do that to you. You don’t have time to mess around, so you get around to the meat of the issue or you just walk away and leave it because you have more important things to do. For a while now, I’ve just walked away because I have, like everyone else, a busy life, but there are times when I shake my head and sigh and think “What a shame.”

A few years ago, I was being included in an article about autism, parenting, and alternative autism treatments. I was excited to be part of it, because I really believe autism is not displayed to the world for what it really is.  (More on that later.) I also wholeheartedly believe in biomedical treatment for autism, be it whole hog GFCF diet and a bunch of supplements or just the addition of a healthy vitamin and removing dye from a child’s diet. I readied for my interview, and on the day it was to take place, received a call notifying me that we weren’t going to be able to be included. What? I fit the requirements of what you were asking for — I’m a parent of a child on the autism spectrum who is receiving biomedical treatment living in a certain locale, and my child is a male within the required age-range. How did I fit before but not now?

I was surprised at the answer: “You aren’t biomedical enough.”

Really?

First, what is “enough?” Secondly, why didn’t requirements list that up front, and probably most importantly, (thirdly?) why isn’t your article showing people that you don’t have to be GFCF, anti-yeast, seven daily supplements, chelation and HBOT to actually have biomedical success? Why is only the extreme being included?

They didn’t give me a good answer, but I gave up. This was when life was even busier now, as my child was younger and his issues were worse, and I didn’t have time to fight every battle. I wish now though that I had.

Much of the autism community longs for acceptance by the rest of the world. We push for it for our children, and we want mainstream medicine to give credence to our feelings and facts. We just don’t give it to each other. We aren’t doing ourselves any favors if those ‘facts’ only include only those that are the worst, only those that are the most extreme, or only those who make for the best media interest.  We don’t like it when autism research is ripped apart and nitpicked, yet are we guilty of it ourselves if we don’t allow for all those on the spectrum to be represented?

At the time, my son was taking a multi-vitamin designed for children with autism, was casein-free, was on an anti-yeast protocol and zinc for a mouthing/licking tic. And he was improving. Shouldn’t that have been enough? Then again, I heard then (and still do) from other parents that he should also be gluten-free and on a bunch of other supplements. We can sure be the harshest support system ever.

Another case in point: many autism segments on television shows, movies or news segments include the same families and usually severe children. My beef’s not with seeing the same people — they have the right to participate in whatever they choose — but what about the rest of the world? Are they not volunteering or are we just using the same spokespeople over and over because they make a bigger impact? How does one get ‘in the loop’ to be included so the general public can truly see the variance in autism? I won’t go so far as to use the word “clique,” which I’ve heard it referred to numerous times, because I’m not sure what the cause is, but the world is full of amazing autism families, and the same few are the only ones that will ever become known to the world. I also feel strongly that mildly affected children should be included as well as moderate and severe. Maybe it’s because I’m tired of hearing “really? Your son has autism? I couldn’t tell” because they don’t know enough about mild autism and therefore, they don’t think “hmmm, maybe he has autism” and instead think “What a brat.” Or maybe it’s because there are so many parents out there not getting their own children the help they need because the kids they saw in the piece about autism on last week’s news show all were non-verbal and very obvious developmental issues, tics or other obvious things. Probably some of each, and a few other reasons, too.

The next charity autism mini-movie that I see, I’d love to see it include those with Asperger’s who are so desperate to have friends that they would do anything to fit in but don’t know how, some verbal autistic children who are grades ahead in their class at school but can’t handle the blinking lights in the classroom, the children who aren’t potty-trained but are vocal enough to tell you their feelings on being teased for their diaper, along with the non-verbal children who stim and spin and hand-flap. That’s the real autism community, from one end of the curve to the other. It’s the very real spectrum, and maybe it won’t grab hearts as much as just the extreme kids, but why not show it like it really is?

There are awe-inspiring people in the autism community, and I’ve been lucky to meet many of them. When I need some help or want to share something I’ve learned, I’m equally lucky to know that they’re there. But I think we fall seriously short of equal representation. We want to show our worst, our noisiest and our most renown — it makes for better media. But does that make it better in the long run?

For the quiet, unknown moms, dads and children  in the autism community, the ones who aren’t online much and are working just to get through the day, you deserve the covers of magazines, the spotlight in a news piece, or the focus of a written article. I can’t give it to you — just a small blogger who probably speaks her mind too much, but I wish I could.

Swine flu. It kicks your butt, and that of your entire family. No more than any other flu, and certainly not worth the vaccine, but nonetheless, it not only kicks your butt but it kicks it to the curb four houses down, into the gutter, through the sewer and out into the ocean 67 miles away. Four weeks later and I am still sporting a mild cough.

So there you have reason number one that I’ve not been blogging. My eyes were spinning at the end of the day, as I still worked during my bout (except for one day where even blinking and breathing was painful), and I was caring for Barnacle Boy, who scared us for a couple of days when the fever continued to hover around 103. Both the girls ended up with it, then the husband. Other son ended up with some cough and congestion last week, but that’s as far as it’s gotten. He’s oh so lucky.

I love Christmas. Why do I say that, you wonder? Because I love it more than Halloween..yet Halloween turns out to be this huge busy deal and before you know it, October’s gone and I’m wondering how to spend Veteran’s day with the kids who are out of school, yet I’m not because I have the Monday before off. Halloween this year consisted of two major parties, a few smaller events, and then the Trick or Treat Fest of the year at our house. We have this ginormous maze constructed in the front yard, from the curb I’d previously been kicked to through the yard, the driveway and out the side of the yard to the other street, complete with roaming monsters of the Freddie Krueger and zombie-type, scary movie music, and screaming … adults. A lot of the kids collected candy at the end of the driveway and backed away hoping Freddie didn’t see them.

Yet, I am <quietly> glad Halloween is over. I’m still tired. We went off-roading the weekend before Halloween and had, let’s just say, a little accident. Wear your seatbelts no matter how slow you are going, even if you are driving over a rut in a driveway. (No, that’s not what happened, I am just making a point. Heed my point, really.) Rollbars make nasty, ugly, sore and painful indentations on your eyeballs, eyelids, cheekbones, foreheads and noses. Trust me on this. Once you get the blood out of your clothes (and the off-road vehicle’s seats), you will not want it there again. I’m still sporting a crescent under the eye and eyeshadow is one of those things I have to really, really consider before I apply.

This past weekend was another huge Halloween party, this time adults only. (Unless you count the 20-somethings…my two oldest kids and their friends…who crashed it around 11:30pm just to see why Mom and Dad looked forward to the party all year.) Good thing my costume came with sunglasses to cover most of the bruise. I was Trinity, and husband was Neo. We were simply awesome.

So, how is Barnacle Boy doing after all this? Well, a few days before Halloween, he had to have an emergency baby root canal. (This was the, hmmm, 4th, I think?) He was not happy. Dh met me at the dentist and said he did great in the procedure. I drove him home, with him being the quietest (and creepiest) I’ve ever seen him while awake. He went to school the next day and recuperated impressively fast. Then the week got more and more chaotic during pumpkin hunting, then carving, cookie decorating and guests. Come Monday night, he was DONE. We got through the evening of clean-up and declared yesterday and today guest-free days. The cell phones were turned down and tv choices were BB’s. I even made a mad rush to Target to get Stratego, the game he had to have after playing it the last night of his two-year program he completed last week. (WAY TO GO, DUDE.) He came home from school, opened it, and declared it THE WRONG STRATEGO. (There really is one Stratego though. I know this because I researched it.) Pieces went flying, mad words were said (by him…not me…I stood there in amazement thinking “Don’t ruin The Wrong Stratego, I can return it!”) and an hour later, he was calmly eating an Oreo as we prepared to leave for his parent-teacher conference, where we proudly learned he’s academically more than a grade ahead but in need of more help for social skills, classroom participation and appropriate conversation. Always something, right?

That’s pretty much a uber-fast version of the last month and I know I’ve left things out, but I guess I need something else to blog about on a slow day in the future, yes? I know it will happen, and the fact I’ve admitted that is step 1 in my Blogger Improvement program. Admitting you have a problem is key. I admit it. My name is Dee and I am not the best blogger lately.

But that will change. With autism, there’s always something to whine about, complain about, or just sigh about. And with an awesome beautiful kid, there’s always things to brag about, be proud of, and happily share. I just need to find the time.


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