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 ūüėȬ†¬†¬†¬† 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.

No clever title for this one, just a one word question from a worried mom.

These last few weeks, BB’s been ‘off.’ No one thing seems to be the cause. No changes in diet, no new meds, supplements, treatments. No new activities. Something’s just off.

Today, I’ll wonder every time the phone rings. Will it be the school? If it yes, will he be sick, or will he be having a meltdown? Will I have to pick him up?

I am thankful for a few things despite what appears to be one of those downs on the rollercoaster of autism. I am thankful for a good school nurse who works with our son, and with us. She comes up with good ideas to help him stay the whole day of school, and to make that day easier for him. I’m thankful ds can tell us what’s going on in his day, though speech doesn’t equal communication so I really wonder what we’re missing as he interprets things differently and is so literal, he may miss the big picture. I am thankful for a good school admin to help us make some changes for the upcoming year. It’s clear now he needs more social skills help, and we can’t risk starting a new school year without it. I am also thankful we live so close to the school and that my job/employer/supervisor allows me the flexibility I need to take their phonecalls and run over there as needed. And, I am thankful for Clairol, a haircolor I can do at home on my own schedule at a price that won’t make me compare it to how many doctor appointment co-pays or expensive child’s slip-ons I could buy with that money.¬† (Gotta be thankful for the little things, and be willing to laugh at where your mind can go sometimes, too.)

Every day, getting BB out the door to school is a battle. It’s not that he’s entirely uncooperative. It’s not that he’s refusing to walk away from the TV or computer like he used to. It’s that he’s so stressed about school it appears to be causing anxiety that’s manifesting in tummy aches and other physical issues. It’s hard to explain, but you autism parents will get it: he will get so upset about something, to him, he feels like a tummy ache but it may be tension. Or, it may outright be a tummy ache because he’s so upset about something that it really is making him sick.

When I left him at school yesterday morning, I again left him at the picnic table. Alone. I hate it. I’m so tired of leaving my sweet, funny little guy alone in a sea of children. They walk past him and he tries to play but they run off. Or he calls to one of them and the child(ren) ignore him. He’ll get a couple “hi” or “hello”-s when hanging up his backpack, but if my son responds (obviously, an issue we need to deal with) they still aren’t the ones wanting to play with him. I’m glad for those kids but I want him to have someone that says “Yay, xx is here! Let’s play!” Don’t we all want that when we go to work or anywhere on a regular basis? I tried a different tack and told him that those kids that didn’t want to play with him were missing out. “You’re a fun kid!” “Mom, only to adults am I fun.” What do you say to that?? He’s right, adults love him, but adults aren’t in second grade.

As I sat with him at the table, he told me he was tired of getting picked on. My hair stood on end. Picked on? Was it finally happening? I’d worried about this for a long time, someone teasing him for something he can’t control. Kids tease, and I expect this, and he’ll have to learn, but to tease him for a physical thing — a tic, a stim — just shouldn’t happen in second grade, yet it is. And by a surprising child, one who earlier in the year seemed to be an ally who understood him. So much for that. Apparently she sees him make a face, mimics it, and they laugh. He went on to tell me how he’s tired of other kids not including him, and this one girl talking about him. (“But, she made a mistake she doesn’t know about. She tells xx and he tells me what she says!”) It’s time for a change. I can no longer leave him unhappy, wondering, hoping that his day gets better and that he doesn’t stress himself into a tummy ache.

On Monday, the phone rang from school. He’d hit his head on the table but we’d told him to make the whole day at school without a nurse visit, and he of course took it so literally, he thought he’d be in trouble. Poor little guy, of course you go if you’ve got a boo-boo. Tuesday, the phone rang. Twice to the office for a tummy ache. Once he talked about it, he went back to class. I already have a mail from the school about excessive absences, but what do you do? How do I fix this? If he’s sick, he needs to come home. If something there is making him sick, they need to resolve it. So now we work together to find out why, and hope the rest of the year goes quickly.

And on other fronts — his appetite has increased so he’s eating bigger, fuller meals. He’s easily upset by things, and you just never know where a conversation will go. Will he blow up? Yell at me? Not want to talk to me for half an hour (or more) because I asked him to stop picking at the dry skin from his lip licking? At therapy last night, he had to be pried off me, and then wouldn’t come out from under the table. He refused to cooperate and had what was probably his worst night there in 15 months. Yet, when we got home, after the bath that I practically had to hogtie him to take (he goes into this non-listening mode where he completely ignores us and it’s really convincing), he pulled out “Diary of a Wimpy Kid: Rodrick Rules” and read out loud for a while. And read good! What an ability to sound out words he doesn’t know, which aren’t many, and to hear him laugh at a book….ahhh, not much better than hearing your child spontaneously laugh.

So things aren’t all bad, but what’s causing the regression? The stress from school? Just going through a phase? We see the neuro next week to have the MRI and bloodwork discussed. I want to talk about the anxiety then, too, see if he has any ideas. We’ll work with the school, and continue to talk to ds. It’s so difficult when things seem to be in one of ‘those’ phases.

If you haven’t seen it already, try to find a transcript or clip from Larry King Live on Friday night, with Jenny McCarthy, Jim Carrey, and Dr. Jerry Kartzinel. Oh, and Dr. Bernardine¬† Healy, the voice of reason who understands that we parents need to be heard, that biomedical treatments shouldn’t be ignored, and that vaccines may be one of several toxins in our world that are contributing to this huge increase in the number of children with autism spectrum disorder. Leave your opinions or biases behind as you watch, and listen to the numbers. It makes sense.

Gotta run. He just woke up and I need to go give him a cuddle snuggle…something about his eye hurting….

I whined yesterday about all the things going on, but once just isn’t enough. Be warned.

Awards event at school yesterday, and ds was unnecessarily upset (not his own fault, imo) by a technicality. Sometimes I really wish people would understand how important these things are to ASD kids. Little upsets that just aren’t worth the fight can ruin an entire afternoon. And this did. I’ll leave it at that, but I just want to be like other parents, go and watch something and have a smiley child who is enjoying himself. Heck, I’ll forego the smile, I just want him to enjoy himself.

With no respite last night, I had to tote him along with me to Borders. He didn’t want to go, but the bribe of a chocolate chip cookie was too strong to ignore. But..and this shouldn’t surprise me, given how our week is gone..Seattle’s Best was out of chocolate chip. They had some delicious looking other flavors, but no chip. Oh no, he’s getting anxious. Oh look, a bakery next door. Run across the street, find the cookie. Crisis averted. We find Jenny’s latest book on the “new” shelf, pay the cashier (feeling the ridiculously increased tax hike for the first time and nearly cry…if I feel it on a book, what about when I shop for clothes for the kids or order his new supplements??) and enjoy my non-fat Blackberry Cream Latte. The little things in life. I was trying to keep ds calm about his cookie, then realized: would I be upset if I couldn’t get a coffee right then? Probably.

I am exhausted. I am so thankful it’s Friday. I’m not sure if the weekend will be a relaxing one, it’s too early to tell — as in, I don’t know until five minutes beforehand, and sometimes not even then — but at least I won’t be throwing work into the mix. I’ve been working earlier most days anymore, so I can be sure to put in my time around any issues with ds. It’s do-able, but when you dream of being chased by scary dogs, when ds isn’t coming into your room due to another nightmare, sleep is fragmented.

Today we’re going back to Kirkman’s chewable multi-vite. Ds isn’t currently GFCF so it’s fine. We saw the biggest improvement on it, but he hates the taste. I am not a walking checkbook, so I’d like to get him to use this bottle before I switch to a liquid or other version of it. I’m also starting him on double S. boulardii, a good probiotic to combat the yeast that’s probably built back up in his system. We did an anti-yeast protocol around 18-20 months ago and it was fantastic but it can return so it’s a good time to try again.

And, because it’s fun, ds is home from school again. Okay, it’s not really fun but you gotta laugh to get through the neverending stuff or you’ll go crazy. He woke up at 5:40am and said his leg is burning. No swelling, joint is fine, but it hurts to touch. What now? He’s near tears, and when he’s not looking, we tested it by touching the leg. OUCH!! So, a new symptom added to the mix. We’ve decided that it’s time to go back to no dietary infractions: all homecooked/homebaked stuff and no dyes. (Dad bought him Fruit Gushers earlier this week, which to me is just a big package of HFCS and dye, but Dad was giving in to a sweet boy who’d already had a lot of stuff going on and really wanted to try the gushers. Who knew.) He also had a couple of processed foods, like pizza pockets. Yanking those out of the diet too. He was already acting odd/off by then, with the lip licker’s dermatitis and headaches, so at least we can’t blame those on bad food, we really are careful with his diet. But this leg thing has thrown me for a loop.

It’s a rainy day here, so I’ll be getting the fireplace going shortly and will make it a snuggle & cuddle day. We got AT&T U-verse installed, so he can watch anything he records on any tv, and he’s got his own tv in his room. Well-worth the cost. (And the money we’re saving over our prior services is a good thing, too. TV, phone and high-speed internet together is way cheaper.)

Enjoy the weekend. Not sure if I’ll be blogging or not. I do have to say I’m disappointed I saw so little about World Autism Awareness Day, other than some online mentions in the appropriate autism-related places/communities. Nothing on TV or on the news. I guess it’s less important than what the latest loser celebrity is doing or other ridiculous news stories I did see on. Shows you where our priorities lie.

Loving your kid just comes natural, right? Wanting the best for him, doing all you can to ensure his safety and giving him all you can, within reason, for happiness? Looking forward to when they get home from school, playing with him, and just spending time with him, right? Wait, did I lose anyone on that last one?

A few days ago, I was returning at item at the store when I¬†ran into¬†a woman¬†(with her child)who¬†I’d met through a friend a while back. She has a young child¬†who was dx’d with autism a year or two ago and my friend had tried to set us up to talk when her child was¬†dx’d after mine, but the woman was first in denial, then was so deeply entrenched in¬†self-pity (not about her child, but about¬†the impact on her own life) that it never happened — her choice, not mine. I also¬†think she had a secret feeling that I couldn’t understand her, because her life¬†was ‘so bad,’ and mine wasn’t, though she knew very little about me. (And before you think I’m talking about someone who may just read my blog, I promise, she won’t. “That online stuff? A waste of time, I’ll talk to my doctor, thankyouverymuch.” Ooooo-kay.)

Last time I’d seen her, she was a working mom planning a vacation with her kids. She was driving a nice newish car, and looked like someone who paid a lot of attention to herself: manicured nails, modern hairstyle, non-wrinkled clothes, matching bag…not what I look like on a daily basis. ūüėČ This time? She was still driving a nice car, not quite as new, and the nails were still done, the hair was a different stylish cut/color, and she still looked really put together. But looks can be really deceiving, I guess. (And if a lot of people I know are any indication, you can be perfectly happy in a t-shirt and shorts with a ponytail and still be happy, so looks really don’t mean much unless you’re paid to be a model.)

First thing out of her¬†mouth after I asked her how she was doing was a sigh. Not a good sign. Here I am trying to make a quick run to return something and replace it, and I¬†could see a therapy session coming for someone I don’t even know very well…and here I am, a parent with my own struggles and my own issues to deal with. As much as I love to advocate for autism, educate, grow awareness and just be a listening ear, babysitter, helper, whatever, I am still a mom of a child with autism. We all deal with it in our own ways, but the fact remains, when someone drops a big problem in your lap without so much of a lead-in, I can’t help but kind of cringe. Selfish, maybe, but I think it’s more of a self-centered issue..hence, back to that “Your life can’t possibly be as <sigh> bad as mine.”¬† I love to help other parents, especially those with new diagnoses or other issues, but just because I’m not sighing my problems out to the first person who I speak with doesn’t mean there aren’t any. (I’ve actually considered being a paid¬†advocate at some point, but only when my son is older. )

Now that I’ve gotten that out of the way — I bet you’re wondering what she said after the long dramatic sigh? She sighed again. Finally, after she’d impressed upon me how.truly.bad.it.all.is, she started to use words. She explained that the main reason for her sadness was that her son’s summer program was only half-day now. I patiently waited, sure there must be more, but that was it. I could understand the difficulties this would pose with her daycare, both with the cost and with the logistics, and I could sympatize. I work from home full-time because I know it would be hard to find a job that would allow the flexibility that’s necessary if a school calls or has a really bad day. But that wasn’t it. She didn’t like that he was around in the mornings later now, and therefore, she had to ‘deal with him’ before going to work. I’m not sure what look was on my face, but it must have been somehow inviting because that opened the floodgates. While she had some legit issues — we all know how difficult these kids can be, and how much time they can take — the list was, well, ridiculous. Some things she mentioned were things parents of neurotypical kids face. Others were more common among families dealing with autism, and others were singular to autism. Still, none of it prepared me for the facts of just how much she resents this child. How much she wants to leave¬†the child¬†with a sitter, ‘deal with¬†the autism’ during¬†the weekly O.T. session, but beyond that, ignore the autism and be angry about the behavior. I could say that this was because it was easier for her than facing reality, but I really think it was more of conscious decision. All in all, I got a strong feeling she really didn’t like her child, and really wasn’t interested in investing more time/effort to help him, so she was hoping someone else would.

Before I sound totally unsympathetic, I say again that I know everyone deals with an autism diagnosis in their own way. But after two years (which she emphatically reminded me) it’s time to move on. Deal with it. Face it. Step up to the plate. Be sad, be frustrated, whatever, but moping longterm isn’t fair to the child. The child deserves an engaged parent willing to do more, at any point, to help their child. It means sacrifice. It means giving up time from the manicurist if your child has a meltdown and needs mom to hold him tightly until he’s calm. It means finding a way to find family time together, whatever their type of family time may end up being — we all know it’s not always the same kind of family time other families may have. It means stop asking for someone else to fix your child, and learn to do it yourself in addition to outside help. Advocate for your child, don’t just whine. And when talking to another parent of an autistic child, recognize that it’s not a competition. We don’t have to one-up each other on who has it worse. We don’t need to compare bite marks or share only the bad things. There IS more to the child than autism.

So many of us talk about how we don’t want the label of autism to define our child. But, like the above woman, how many of us fail to follow-through? When someone asks how our child is, do we tell them how they broke our glasses in the latest meltdown, or do we share how they showed empathy successfully when their sibling’s pet died? Do we whine that we don’t have more respite or do we talk about how much fun it was when we played with bubbles outside yesterday? Do we blather on about the negativities related to our child and raising that child, or do we share the joy and happiness that we have a beautiful child?

I guess my point is that I love my son, issues and all. I look forward to time with him, and I will be sad when school starts, though I know it’s a good thing for him. I love to sit near him when his head is stuck in the Gameboy, watching his emotions and listening to his funny comments. I may wish he’d stop talking 24/7, but he talks, and for that I’m grateful. I’d much rather hear him quote an entire Pokemon DP episode frame-by-frame than the alternative. In other words, my son has good traits — wonderful characteristics — a personality that amazes me daily. I can’t let any of his autism-related behaviors overshadow that. I can’t wish time to fly by, I want to enjoy every minute…even if some of those minutes are spent stopping him from throwing something large and painful at me…because he’s my son. He’s my responsibility. When we have children, unless you have large movie-industry paychecks, we can’t special order our children. We get what we get. Some children are more challenging than others, but these are our miracles, our babies. To treat them any less is unacceptable.

And the woman I spoke with? I hope she gets some help. And I don’t mean just more respite, a larger support system (though she had a heck of a larger one than most already) or more services for her son, but therapy for herself. And maybe for her marriage, who knows what this does to them as a couple. I’ve not met her husband, maybe he’s in agreement with her? I won’t speculate, but the environment in the home as it sounds now just doesn’t sound nurturing. Even if autistic kids are literal and supposedly don’t pick up on things all the time, they are incredibly smart, and we never know what they are presuming from what goes on around them. I hope this woman stops leaning on ‘the system’ to take care of her child, and remembers she is still his mom.

And oddly enough, maybe, the child was with her during our conversation. I’m not sure how much he heard, he was playing with a handheld game, but he spoke to me, quite nicely, didn’t pester her to leave, only interrupted once to ask about buying a drink, and was quite the sweetie. Sure, we all know autistic kids don’t display behavior problems 24/7, and until we’re at home with them, all bets are off as to what mom and dad really deal with, but it was hard to¬†reconcile the negative rant about this child when he was having such a good moment, however long it ended up lasting.

I did suggest she look online, but since she was still against that, I recommended some autism groups, some resources, and some books. I doubt she’ll follow-through, though I can hope. She seemed to know it all, and that nothing would help. (The thought of “But if something helps, what would she complain of next? went through my head.) We can’t just take our kids to their O.T. sessions, or their speech therapy, or their social-skills sessions or their behavioral sessions and then forget autism the rest of the week. It’s up to us to learn about autism. It’s like something we’d get a real education, a degree in, a career, but we learn it without the physical four walls of a school. When we start any other career, we learn a lot in a short period of time, start applying it, then continue to study it and research it. We learn about new products/tools/resources available for that career, changes in the field, and we look consistently to stay on top of it. I don’t see that any different from being the parent of an autistic child. Sure, some weeks we’re shorter on time than others, but it’s our job to stay involved, to stay on top of things in the autism community, to do whatever it takes to be the best parent for whatever kind of child we have. And to be thankful, to be grateful, that we have that child while we’re doing it.


Enter your email address to follow this blog and receive notifications of new posts by email.

Join 34 other followers

Twitter Updates