Autism Watch: 2007

Archive for March 2011

I just realized I didn’t share this with you, this gem, this dentastic visit to the dentist for a filling. It’s an epic story, from start to finish.

Start: I pick him up from school, he’s on a tear and starts to cry within seconds because the teacher reprimanded for something that she’d seen while outside of school on a weekend. (I am biting my tongue from sharing my feelings on that, it would take a whole new blog entry.) I promise him we’ll handle it, put on a calm face and secretly think that this may have seriously messed up our dental appointment.

We make the 25-minute drive in pouring rain, with BB talking to Dad on the phone about the injustices of his day. Dad agrees with me that we need to fix it, but top priority was relaxing him to get through the dentist appointment. Ha. I’ll get right on that.

He gets in the chair. Whew, we’re psyched up and ready to go. Oops, 9-year-old girl across the hallway had a meltdown and had to leave — now she’s back and they are going to finish her work. Dentist leaves our room, chair comes back up straight and out comes the DSi XL to keep him busy. Ten minutes later, dentist is back. BB is nervous. I’ll spare the details, but the dentist’s hand got novocained. It was bitten. The mechanical tray over BB’s lap went flying. BB had to be caught before he fell out of the chair onto the floor. Five of us were in the room. Door was shut. Door was opened. Dentist tried three times before he admitted defeat. I was sent on my merry way with a puffy-faced, red-eyed child apologizing profusely for not being able to stay still in the chair due to having a bad day at school. I did the same, while wondering if indeed we could return. Would their patience be any better next time? Did they really want him to return? Would the dentist wear leather gloves??

Finish: It.was.a.disaster. Dad seems to think he can get him to go back to the same dentist and try once again. Hmmph. I’m not going again. I think we need to try a special needs dentist about an hour away. We’re undecided right now, but we will be making a decision by Monday — the filling has to be done soon, but we have a few days to be sure we don’t put him through anything else unnecessarily.

Special needs dentists are a rare breed, and if you are one, kudos. I’ll try to warn you if my son bites, but I imagine it won’t be your first time. Or at least I hope. I’ve had enough of being the unique situation.

Home?

Yes, but it needs to really kick some butt at school.

What a week. The next time someone tells me “you’re so lucky your child is verbal,” I may have to say “yes, I’ll remember that next time I’m in the office dealing with yet another punishment for his verbal behavior.”

Folks, high-functioning autism, mild autism, Asperger’s, whatever you want to call it, is no picnic. It’s not a party. Not a cakewalk. Definitely not easy street. De-de-definitely not. (Sorry, the Rainman movie came to mind.) It’s autism, but on a level where they’re given enough independence to get in trouble and where their words can be used against. It’s autism, with its meltdowns, self-injurious behavior, lack of friends and social skills, obsessions, repetitive behaviors, lack of proper communication, sensory processing disorder, and other behavior issues. Just because he speaks and can attend a regular class doesn’t mean the autism is any less ‘real’ than any other severity of autism. He still struggles daily to handle himself and get through the day. He isn’t being controlling to be sneaky or be a brat, but instead, it’s to have his environment be comfortable and the restricted, routine way that makes him most comfortable.

Despite all that, daily, our kids are lost. They fall through the cracks but there’s those with ‘real’ disabilities to deal with. They appear normal, whatever that word means, to those who aren’t educated specifically in the autism spectrum, with focus on the word spectrum. Their ‘normal’ appearance is so misleading that others forget and try to fit them in the same mold as the neurotypical kids are in, and then they complain because the results aren’t what they think they should be.

Try to put a square peg in a round hole, and you may be able to hammer it in, but it will look awkward. It won’t all fit and it will stand out. It may crack and there will be gaps. So just because you get it in there doesn’t mean you were successful in anything other than forcing something that wasn’t supposed to happen. That’s my son, forced into the role of a round peg when he’s definitely a square peg. Is a square peg wrong? Not at all, but if you continually tell someone they need to behave differently than they are, they start to wonder why, and they start to feel badly about themselves. Then you can add self-esteem and confidence issues to the list of pre-existing problems caused by the autism — but these issues are caused by ignorance and not the autism directly.

My goal now is to increase autism awareness so that my son is happy. I want every child with autism to be happy, but I need to start with my own. Awareness month here is a big deal. We are putting out 12 blue light bulbs tonight so our yard is rimmed in blue. I’m dying some of my hair blue tonight — really, a bright dark metallic blue. Awareness ribbons, magnets and pins will be visible and I’ll be continuing to ask random businesses, and strangers, what they’re doing to further awareness, while explaining autism to everyone I can. But I am focusing on high-functioning autism, the children that don’t fit the mold, those that are misunderstood, and those that are falling in the cracks because few know what to do. My goal is to decrease the number of people who don’t know what to do with my son.

My son is my light, my joy, and a blessing to our lives. He is funny, smart, wise beyond his years, and thinks outside of the box. He has a mind for computers and logic that amaze me, and a memory that puts most to shame. His stories are so entertaining, and his lack of a verbal filter means he keeps us on our toes and gets adults thinking outside of the box too. Not a single person who has given him the chance to talk can say that he didn’t impact them. I hear throughout the years, from everyone who has worked with him or talked to him more than a minute or two (which isn’t nearly enough, because if you are uncomfortable around different people, you tend to not give him the chance he deserves, which is seriously your loss) that they love him and they want more time with him. People get him, if they open their minds and allow it to happen. Stop putting kids in a mold, see them for what they are, and accept them. Your lives will improve, you will learn more, and my son will face less discrimination. Win-win.

I’m off to go get the light bulbs ready and see if there’s a blue snack I can send to my son’s class tomorrow. He won’t know the significance of it, but adults might and if nothing else, how many snacks are blue? It’ll be yet another different exposure, and that’s never bad.

Over the years, I’ve noticed how the autism community doesn’t always work together to help itself. It’s only my opinion — I’m just one of hundreds of thousands of moms with an opinion — but I can’t help but think there are probably a lot of people out there who would agree.

When my son was first diagnosed, I immediately joined several autism communities, online and off. Some I stayed with, some I didn’t; some were helpful, some were depressing; some were inclusive, others were cliques. In other words, just like the rest of the world, these groups represented the bad and the good parts of society and families. I took it with a grain of salt, and learned quickly that simply having a disabled child didn’t unite us as much as I thought it would.

We all come from different walks of life, and different perspectives. Some of us are drowning in autism research, others have moved beyond that. Neither is wrong, they are just different stages of dealing with having an autistic child. Some of us work outside the home, others are stay-at-home moms. Some of us have other children, some have other special-needs children, some of us have an only child. Some are married, some are single. Some are fully following biomedical treatments, and others follow whatever their doctors say. Some vaccinate, others selectively vaccinate, others don’t vaccinate at all. The group is diverse, and as a result of that, a huge pool of invaluable knowledge.

Now if only we could work together to use all that knowledge.

Instead, I see us judging each other. (I know, I know, I’ve written about it before, but as Autism Awareness Month comes up, with April 1st being Light It Up Blue day, via Autism Speaks, and April 2 being International Autism Awareness Day, I’m seeing more and more commentary coming up that just doesn’t seem in keeping with the ‘let’s help each other, we all have a kid with autism’ credo that people like to tell you they follow…but don’t always do.) Maybe I’m doing it too just by writing about it, but if we keep sweeping it under the rug, it will never go away.

I’m not a follower of any particular autism group. All of them have their downfalls, and some are worse than others. All of them also have their advantages and good points, even if they never touch the majority of those affected by autism. While I don’t fully agree with any of them, I’m a big believer in ‘any autism awareness is better than none.’ If it takes lighting my business storefront up with blue to get people to learn about autism, or to get people who know what blue means to think about autism, I’m going to do it. In fact, I’m going to dye some hair blue for the month — talk about getting attention, it’ll stand out a lot more than the puzzle piece keychain or vaccine t-shirt I wear the rest of the year.

Years ago, I needed some serious help in regards to an autism-related situation. The main group I’d been involved in basically put their hands up and wished me luck. Since then, I’ve seen them give money/services to others in the same situation while others, like me, get by with referrals from strangers online. Help isn’t readily available, but is given to those they choose, which seems more like a popularity contest or a ‘how biomedical orpro-vaccine are you? -based decision. I was twice refused inclusion in an article about autistic children because we weren’t biomedical ‘enough.’ To me, that a child that is improving with just a couple of biomedical treatments should be shouted to the world; shouldn’t we be telling people you don’t have to buy HBOT machines or mortgage your house again just to see some help? Instead, we have to be whole-hog or no one knows who we are. What a disservice to those with autism and to the message that autism can be improved.

I’ve talked to quite a few moms (and dads) the last couple of years who have gone radio silent — they disappear from lists, conversations, and support group meetings. When I inquire how they are, I hear that they’re just tired of the whole deal. Tired of the same few families being chosen to represent everyone else. Tired of the judgment they get for not being GFCF, or for letting their child get a vaccination. They’re tired of hearing what they’re doing wrong or being treated as though they’re stupid for letting their child take a prescription medication. Tired of being ignored or of not being part of the ‘in crowd’ because of a decision they’ve made that isn’t the party line. Some of these people desperately still need the support, and others were wonderful, giving members of our community who have much to offer by way of information and support. As a result of the negatives, we lose these people, and the opportunities they bring with them, because we can’t respect others’ opinions, feelings and choices. And to take it a step further, some people do more damage by trying to make their point, showing the world our lack of unity in a common cause, and time is wasted proving someone else ‘wrong’ or taking time/energy away from the positive that both sides could be doing.

I’m really hoping we can go into Autism Awareness Month together, and just be glad for the fact we have an awareness month. I personally tire of it not being as important/popular as other months. I know it’s not a fatal illness, per se, though the wandering children or those with seizures, their parents will say it is a fatal illness and they’d be correct. With the sheer numbers of those of us affected, it should be everywhere. So I’m going to do my part. If putting blue light bulbs up all over my yard gets people asking me why, then I’ll do it. Our neighbors know we have a reason, so they’ll ask. They see orange and black at Halloween, red and green at Christmas, so I’m glad to use a different color or it won’t get attention. My hair’s black, so I have to dye it an extreme color to get it noticed – blue works! Maybe I could get spray though and do puzzle pieces…. 😉

Be kind to one another. If someone doesn’t agree with you, it’s okay to disagree — just like I disagreed with my friend who told me that because her daughters were fine after shots must mean that shots are fine. But disagree respectfully. Remember the other people may have reasons for doing what they do, reasons you aren’t privy to, shouldn’t be privy to, or simply won’t understand because you don’t live in their house. And sometimes, sadly, they don’t want to understand, but it’s not your call. Assume nothing — and don’t judge. People learn a lot more from each other when information is presented politely, gently, and respectfully, not as though you’re a naughty child who just can’t stop licking an icy flagpole.

 

….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.

On Tuesday, BB had to go back to the neuro to discuss his migraines. It’s a drive to the neuro, about 40 minutes, and includes crossing several bodies of water and even more two-lane highways. It’s not a rough drive, but I do prefer to do it during daylight. By the time we’re there, BB is already impatient, and on the drive home? We’re required to make a pit-stop, either at a store for something cool, not a habit I want to encourage, or at a drive-thru for fries or nuggets. Since we’re very particular about what fast food we’ll allow him to eat, it’s not a slam-dunk, so I have to plan to drive a certain way in order to pass an ‘approved’ drive-thru. Nothing like turning a simple doctor visit into an event!

This visit, I told BB we’d stop by and get nuggets on the way home. He’d had a rough day at school, and I witnessed, when I picked him up, a teacher snapping at him, pretty loudly and over-the-top harshly about dropping a piece of paper on the ground. (Get a grip, woman, and remember, he’s someone else’s child. Discipline your way at home, but at school, there are nicer ways to reprimand.) He railed on and on about it all the way to the doctor, but the minute we got out of the car, his mood changed. Phew. He loves the doctor’s office, and is especially fascinated with the little door from the bathroom into the office. You know, the specimen door. I had to remind him, dude, look, urine tests sit there. Imagine what you’d be touching if you put your hand there or get your face too close to the door. It did not deter him enough, so I was really excited when he ran to the nurse counter to ask for a piece of note paper. Then he grabbed my check-writing pen out of my hand, as I’m paying the $30 co-pay, to write on this note paper. Then he drops it into the comments/suggestions box. Scary?

We get called in right away. He gets weighed, and I learned he’s gained 3 pounds in 3 weeks. Periactin anyone? That’s the nudge I needed to change medications, as it wasn’t doing enough for his headaches anyway. On into the room, where he regales the nurse with lovely stories from tv shows I wasn’t home when he watched (no, nothing that bad) and then tells the nurse “I’m serious, this is a serious story.” Doctor comes in, we do the exam, talk about migraine med changes, and BB starts with another story. And another. Thankfully, the doctor understands and was interested, quite possibly even entertained, but I’d lost all control. Short of taking him out of the office or physically restraining his mouth, he wasn’t stopping. Yep, ADHD and OCD displays their ugly heads quite evidently, and at least it’s in the doctor’s office, right?

The nurse empties the suggestion box. Finds the note. “Dr. XXX is epic!” We had to explain that epic means cool, but they seemed pleased. Phew. I’m really glad, as we have to go back in six weeks if the new medication isn’t working.

Epic. I guess if you have to go to the doctor a lot, it’s good to have an epic one.


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