Saying It Out Loud

I'm gonna do what a lot of people would never do – I'm going to be honest with my actual thoughts and not sugar coat it and say it out loud. Autism sucks. Autism sucks and I wish my kids didn't have it. Autism sucks and it's not fair; to them or to me. Autism sucks and so does the ignorant attitude of people who make unthinking idiotic comments. These are all the 'sayable' things. The “Unsayable” things are harsh. Bitter, negative, unfriendly. It'll probably surprise most of the people who know me. I don't say these things out loud. People are always telling me how funny I am, what a good sense of humor I have, what a great handle I have on it all. It must be my background in role-playing games – it makes me a good actor. My current character is a super mom who is a super fighter for her kids and autism advocate, who is both mom & dad, not to mention teacher and a host of all those other things. Let me rip up the character sheet for a moment and let the harsh truth seep in... Autism sucks. It is not a gift, a challenge to be overcome at the end of the road – it is a devastation to every parent who ever heard the diagnosis, and is lifelong, unless you're one of the few who get lucky with the 'cure of the day', whether it be Secretin, ABA, Music Therapy, Hyperbaric Oxygen, GFCF diet, or the many other cures that come and go. I'm not saying these things don't help some kids – they do, and I've seen good things happen for some, but I've never personally met a child who has been completely 'recovered'; only heard of them in the news and over the internet. I've tried them all, and my kids weren't the 'lucky' ones. With every failure, one more drop of hope leaves the glass. All your plans and dreams for your child disappear. It is not simply a 'trip to Holland' that landed in China, or whatever the damn metaphor is. Most of the time it is a trip straight to Hell. Sometimes I want to trade my kids in for typical ones. Many times I wish I could go back in time and do it all again and yes – change things. Most of the time I just want to quit. I feel jealous of my friends that have kids that are 'normal', or at least more typical than mine. I feel jealous of those that have husbands and family who help them. I feel jealous that if I want to tear my hair out and scream and take off, the most I can do is lock myself in the bathroom with the kids pounding on the door. I wish I would have married someone with stronger character. I feel envious of the scum of an ex-husband who took off 2 months after the boys were diagnosed, because he's never had to deal with a day of autism. Never had to deal with the Regional Center, the school districts, the various therapies, etc. Never had to use respite hours just to get things done (people actually use respite for respite?) Yes, respite is used to get things done. I learned when the boys were little that many environments were so overstimulating, they just couldn't handle it. Many were the times I walked out of Wal Mart or some other place with a screaming child under each arm, shouting out, “I'm not kidnapping them, they're autistic!”. Now they're 12, and I can't carry one of them, let alone both, so a lot of times, we just don't go anywhere. I'm tired of the snide comments, never to my face, but as I'm walking out with the screamer, the ones that comment, “Some people just don't know how to discipline their kids!”. Once I actually answered the fool by saying, “Since you're such an expert on childcare, perhaps you'd volunteer to babysit this Saturday night?” Not to mention the time I shouted back, “They're autistic – what's your excuse?” I'm envious of those who can just have a babysitter, instead of search for a caretaker/babysitter/crisis interventionist who can handle a 12 year old autistic boy's temper tantrum. I wish I had a child who I could take to a 'natural' dentist. Now that the doctor prescribed Atavan before dental visits, it only takes 2 people to hold him down so the dentist can look in his mouth – it used to take 4 people. I don't have a choice – if they have cavities, they have to use anesthesia. Hell, I have to bring a helper when we go to the doctor, because Mikey will throw himself on the floor and refuse to move, and he's too big for me to pick up. I want a child who has interests, not fixations. The higher functioning one, when he collects things, has to have every single thing in the series, or he loses it. As collecting a complete set of anything is prohibitively expensive, I discourage any type of collecting that comes along. I have not told my son about Bakugan, that new card/toy game. The thought of a whole new series to collect and the issues revolving around not having a certain item in it makes me very afraid. Speaking of fixations, I wish my other child wouldn't scream for hours when we can't find a certain book, toy, shirt, etc. And why is it that the one he wants is never the one I just happen to have seen, but one I haven't actually seen in months? The worst is when he asks for a video or book that I got rid of years ago, before I realized how bad the fixation issue was. Now I simply buy lots of big bins, and store stuff in the garage. To that end, I miss being able to get rid of stuff for good. I miss the days when I could open the windows in my house instead of having padlocks on them to keep my eloping son inside and safe. I miss opening the front door in the morning to cool off the house. I wish I could leave my son outside for the few minutes I need to use the bathroom, instead of dragging him inside with me and locking the house, just in case he decides to hop the fence and run onto the freeway like he did previously. I also miss the days when I didn't have to have locks on the kitchen cabinets to keep my son from gorging till he gets sick. I accidentally left the cream cheese container on the counter this morning while starting a load of wash, and by the time I got back, the container had been licked clean. I'm jealous of those who get to use their college degrees. I have a Masters Degree, but instead, I'm my children's caretaker, earning minimum wage through IHSS, because holding a real job where you get to be with grown ups doesn't work when you have no one else who is willing to take care of your kids. There's just not enough sick days and family leave time – I tried. I'm envious of people who get to be around other grown ups on a regular basis. I'm jealous of people who can earn enough to buy a home. We will be renters forever, as the minimum wage won't let us qualify, but also because of the fact that IHSS is constantly in jeopardy of being cut from the state budget makes my job an unstable one as well. Oh, and IHSS won't let you contribute into social security, so for the last few years, in terms of chalking up working hours for social security, I technically have been NOT WORKING. Yeah. And so much for having a savings account, as if I keep one, the boys won't get their SSI. I will never be able to retire. I want to smack the fools who always tell me I must be doubly blessed, or that God doesn't give you any more than you can handle. I want to rip out their intestines and shout, “Handle this!” Same goes for the people who tell me how I should be grateful it's not worse than it is, or that the boys aren't both as bad as the lower functioning one. Side note – these people have NEVER volunteered to babysit my kids. I want to be able to take a shower when it's convenient for me, not have to sneak it in before the kids get up or after they go to bed or wait till I have respite help, because the last time I tried to shower when they were awake, I came out to the kitchen with all the eggs cracked on the floor and Mikey singing about Humpty Dumpty. I want to be able to stay up late again, and not crash at 8:30 pm, just because the kids went to bed at 8:00, and if I don't follow, I may never get sleep, because their sleep patterns are so unpredictable. I'm envious of anyone who can sleep through an entire night, without waking up after 3 or 4 hours, thinking of all the stress and horrors and the worst – what the future might hold for my kids. I'm jealous of my friends who can sleep in and tell their kids to be quiet in the morning, and the kids actually listen. I want to be able to write like this on a regular basis, but I just don't have that kind of solid alone-time on the computer (I've been writing this for months – started it right after Tina told me about this new blog). For that matter, I'm envious of all those people who have time to have their own blogs. Hell, I'm envious of those that have enough time to read other people's blogs. Don't get me wrong – there are good things; lots of things I love about my special children, but many people write about the good. I'm here to speak the unspeakable parts. I'm here to do the job nobody else wants to do, or has the guts to do. I'm the bad guy all the time in my fight – I'm the super bitch to the school district, regional center, and any other agency who is supposed to provide appropriate services for my child but doesn't, whether it be from budget or indifference. I don't care if these people like me, I don't care about establishing a 'relationship' with them – I just want them to do their frigging job – the one they get paid for, yet the one I end up doing for free. I don't want to be jealous, envious, bitter, angry, tired, hurt, exhausted, alone, ungrateful – but I am. I wish I was a better person, like the “Super Mom” character I portray every day, but I'm not – at least, not under the surface. If these kinds of thoughts make me a horrible person, then so be it – but at least I'm real. If I've learned anything from my ordeal, its that I can't afford to delude myself about anything. When you start lying to yourself, that's when you really get sucked under, and that's the time when the kids really suffer, and why would I be going through all this Hell if I didn't completely and utterly love my children despite it all? But just because I'd go through Hell and back for my kids doesn't mean I have to enjoy the trip. Bobbie is the mother of twin boys with autism, one high-functioning and one lower-functioning. She doesn't have time to blog, but you can follow her on twitter: @Bobbie42

A Spoonful of Sunshine for Parents of Children Who Have Autism

As the mom of two children who have autism, one of the things that causes me the most distress is the way some people react to our children. People who face extraordinary challenges should be treated with extraordinary compassion. Unfortunately, sometimes those who face the greatest of challenges are treated with contempt rather than compassion. For this reason, I have a profound appreciation for those all too rare occasions when people rise up en masse to offer support to a person who truly could use it. The following video is example of this type of behavior. For me, it is a spoonful of sunshine to top off a steaming mug of cocoa. High praise to the wonderful people at Fenway Park who opened up their hearts to help a young man with autism sing our national anthem on Disability Awareness Day. To other parents of children who have autism: I hope this video fills you with joy and restores your faith in the human capacity for kindness as it did for me. Michelle McFarland-McDaniels is the mom of two beautiful preteen girls who have autism. She is also a wife, writer, blogger and teacher. Michelle publishes the Autism Assistance Resources and Information blog. She is also the publisher of Funding Autism Treatment and College Resources for Students with Autism.

A Day in the Life on the Spectrum

Most of the time I have no idea why my daughters start a tantrum. It is usually only in hind sight, I can hypothesize what led up to the tantrum although, I never know accurately why or what instigated the revolting reactions known as The Tantrum. Before I go on, let me clear up what I am talking about when I say tantrum. Because, a lot of kids have tantrums. They usually throw them when they didn't get their way or maybe when they didn't have enough sleep or are hungry. And, to a stranger, that is what our daughters' tantrums might seem like at the moment. But please, let me elaborate >>>

Somewhere...

Somewhere, there is a mom who has a child with Autism. This mom could be your cousin or niece, a neighbor, lady at church or in front of you at the grocery store. You might run in to her at a soccer game or at a new mom's play group in the neighborhood. Her child may be able to speak and read and write and look perfectly normal most of the time. But there may be times when you notice the quirks. You may notice that the child doesn't engage and is always running off, covering her ears when a garbage truck belches by then throws a tantrum like you have never seen before. You may wonder if the mom knows that her child has Autism. You may want to reach out to her or her child. Then do. Ask her questions. Accept her and her child just the way they are. She is just trying to navigate life like you are and she needs friends who accept her. Be patient. God has blessed her with her child. God will bless you when you reach out to them. Learn more about the Life of a Juggernaut... It's all about taking two steps forward and ten steps backward, but moving onward and upward one day at a time. Read more about the legacy of the Crazy Jugs, please visit today's posting >>>

Don't Call Them That!

When is a Word not just a Word?

Have you said it? In a fit of pique? Or frustration? In just normal conversation? Have you referred to your children with the "A Word?" Does it define who they are at that particular moment? Dan Olmsted, over at Age of Autism has been ruffling feathers because he believes we need to abolish the use of the word, "autistic." He is on the right track.

I have two children, as you know. They have autism. They are not autistic. Why do I differentiate it in my head? Because autism is part of who they are. It does not define them. They are more than just their disorder or disability or whatever we are calling it this week. I prefer to just call them my children. Who have autism. Though I am not crazy about the puzzle analogy, it fits here. Not because autism is a puzzle, but because autism is a piece of the puzzle.

Dan believes that the word "autistic" is similar in connotation to "retard." He's not far off. It is akin to talking about the "Short Bus", (a slang term for the bus that transports special education students by those who wish to disparage it). It is a negative term, guffawed over lunch by kids who don't understand differences.

Autistic is a very limiting word. It defines the person's limitations. Sometimes, the reputation of a word is enough...it doesn't matter what the actual definition is. No one wants to be called ignorant. And yet, the definition in itself is not offensive. Autistic simply means "of or pertaining to autism." But the gestalt of the word means so much more. Words can be used to educate, but is that necessary all of the time? Sometimes, is it ok to just be?

I have chosen not to refer to my children as autistic. They may change that at any point. It is completely up to them how they will refer to themselves. I have talked to my son about this, and, with no coaching from me, he laughed and said exactly what I had said,

"Why would I want to be known by only one word? I am so much more than autistic!"

(emphasis was his)

I understand there is a movement in the adult world of autism to embrace the word. Take it back, if you will. It seems to me like the N word. Young black men reclaimed the word, and the power that went with it, as their own. But it's a word that is acceptable within the context of their community. (One could argue about whether or not it is an appropriate word for any group to use...) Regardless, it doesn't cross color lines.

That is how I see Autistic. It is a charged word. An in-your-face word. A "we're here, get used to it", word. And I can't make my children part of a political movement. It is time for them to just be children. Without limits.

T, who imagines I've started something

How about you? What do you think about autism vs. autistic?

Technorati: autism, Aspergers, labels

photo by Carey Tilden T. is a writer, wife and mother of three children, two who have high-functioning autism. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom, a contributing writer at The OC Register and her own site, Send Chocolate reflects her passion for her children and autism.