Monday, September 22, 2008

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


  1. You have just become my hero.


    That's me, Becky, hugging a total and complete stranger. I get you, I really get you.

  2. Your blog was so well written. I feel your pain as I am a single mother of three children with Autism. Many days it feeling like the days and the nightmares will never end. I am just grateful the day finally ended.

  3. Amen sister! I want to send your story to every single person I know right now.

    Life of a Juggernaut

  4. Amen! I just found the's so liberating to know that I'm not the only one thinking those things. Thank you from the bottom of my aching, exhausted, over-whelmed heart.

  5. You said it!!!
    Out loud!!!
    Wish I could but I worry people will not get it.I love my kids but this is a hard life. People in public yelling at me, they have no clue!
    Bless you!!

  6. I don't think autism sucks, but being an autistic person in an intolerant and unaccomodating society certainly does.

    "I want a child who has interests, not fixations."

    What's the difference?
    I have interests that are unusual in intensity and focus. They're still interests - in fact, they're even *more* interests. You talk about the suffering when they aren't fulfilled - what about the joy when they are? I get so delighted when I find a really informative article on syndromes, or a really good book I've been longing to have. I suspect it's hard for a non-obsessive person to imagine the sheer delight in this - it's probably more happiness than normal interests bring.

  7. T. ,the moderator, says:

    ettina: I think the problem comes when:

    1) the fixation cannot be fulfilled RIGHT THEN

    2) the fixation doesn't go as planned

    3) the fixation is inconvenient.

    As a mother of children with fixations, I know first hand how frustrating it can be to deal with them. And while I do try to help the kids realize the ones that are ok to let fly.

    ALSO, what do you do when the fixation is dangerous, either because the child doesn't understand what's involved, or just doesn't care? As parents, we have to exercise some control, just for safety's sake.

  8. Thank you. That took guts. It's a sad comment on the state of our society when a person needs to be brave to tell the truth in order to prepare for the onslaught of crap that will be dumped on their heads for telling it. I appreciate what you said so much - Silk

  9. With me, when someone says autism sucks, because I'm autistic I feel like they're saying I suck.
    How would you feel if someone said 'beige skin sucks' and you had beige skin?
    I think that's why it takes bravery to say something like that - because it hurts people's feelings and most people are afraid to do that.

  10. Thank you for saying what many are afraid to say. Everyone needs a chance to see the wonders, but vent the pain, loss, and well... suckiness of it all. say it loud, girl... scream out what we ALL scream in our heads! The world needs a dose of our reality sometimes.

  11. i just found this i totally connect . i found this blog because i googled "frustrated with my aspergian child". i am an educated ,single mom with a part time job and an ex who doesn`t see his kids . i identified with every thing said .but for me it is only x 1. it is no real help, but we are not alone .there are others like us . and after we are gone, what will happen to these kids ?

  12. "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 want a child who has interests, not fixations."

    WOW!!! I know there are parents of severely autistic kids who do not have this kind of attitude. That can further destroy a relationship with your kids, if all you do is complain about how you want them to be "normal." My mom used to say this same crap about me, and it is the most traumatizing thing I have dealt with in my life.

    Perhaps you should read House Rules and make sure you are not spoiling the kids, since that can keep them from adapting.

  13. When you said your "current character" I am wondering do you ever design a picture of it. I am trying making some "mommy cards" and I am looking to design a character that I can use for these and also when I do walk events etc. I found a neighborhood boy wandering, turns out he had autism so its my biggest fear. I am makin the cards to hand out to numbers with my son's info and mine and will also go the police station so they are aware of who he is. Anyway I am trying to design a "Supermom" logo with a mom flying through the air or something juggling a million things (she will look like me a little) and a little boy hooked on by something flying behind her ( he will look like my son) but I have no idea how to do it. I saw your post and thought you might be able to steer me in a direction or maybe not. Just checking.




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