Top Five Reasons You Should Never Piss Off an Autism Mom

Five. We’re Already on the Defensive

What? You think you’re the first person to think I’m a bad mother? Get in line. People have been assuming I’m a bad mother for the last five years. I chew up people who think I’m a bad parent for breakfast. You think there’s something wrong with my kid? No ****, Sherlock – this panel of physicians and psychologists agrees with you. Tell us something we don’t know. Have something new and clever to add? No? NO? I didn’t think so…

In other words, we have experience with ******** like you.

Four. We Are Not Socially Well-Adjusted

We were real people once, and we will be real people again someday, but right now we’re living on the fringe of polite society. We have cut ties and discarded the family and friends who couldn’t handle our situation. We all suffer from severe PTSD. Our houses are messy, our surfaces are sticky, and we know the words to way too many Wiggles songs. We clean up disasters that you couldn’t even begin to contemplate. We live in semi-isolation, trying to have philosophical conversations with children who only know 18 words. We wear yoga pants all day. Our lives are not like other people’s lives. Do you really want to make us angry? Or do you want to give us a really really wide berth and back away slowly because you’re scared of what we might do if we snap? Yes. Good choice.

Three. We Know How to Fight

Autism moms know how to fight because we practice . We fight all day long. We fight with doctors about treatment, and then we fight with insurance companies to get it paid for. We fight with the state over services and we fight with schools about our IEPs. We fight with our families who won’t come to visit us anymore and we fight with our husbands to let off steam from all the other fighting we’re constantly doing. We fight with our children to make them keep their pants on in public. Do you think for a second that we would hesitate to fight with a complete stranger who was totally asking for it?

Two. We’re Already Angry

Autism moms carry huge amounts of unprocessed rage just below the surface. We’re mad at god or the universe or fate or whatever it is out there that gave our children autism. We are furious at the cards we were dealt and indignant that such a horrible thing had to happen to our children. We are angry about the loss of the child we were supposed to have, and we never truly stop mourning. We’re angry at the doctors who didn’t catch it early enough and also at the doctors who did. We hold a grudge against anybody who ever failed us as we tried to make sense of this chaos, and we’re also furious at ourselves, because we constantly feel like we’re not doing enough to help and we’re secretly afraid that it might somehow be our fault in the first place. We are already walking bundles of resentment…do you want to be the straw that breaks the camel’s back?

One. We’re Sleep Deprived

Some of us haven’t had a good night’s sleep in years . Between the stress, depression, anxiety, and the kid who wakes up screaming for popsicles at 3 a.m., we’re all beyond exhausted. We’re muddled and short-tempered and irrational and crazy. Like ax murderer crazy. Like Mel Gibson crazy. There are all sorts of studies linking sleep deprivation to psychosis and that would probably hold up in court if I decided to assault you. Keep that in mind the next time you fail to keep your opinions to yourself, and beware the autism mom.

*I know its long, but its soo good!*

5 Reason's is PRICELESS! You should print it and sell it...You go Mom!!!!!!!

I belong to a yahoo autism spectrum disorder group. I love and hate it at the same time! lol

I am so glad that there are online support groups. While I am glad some are disability specific I hope all can pull together to keep funding and new services coming along.

For what my generation, and especially the one older, called Exceptional Parent's (after a ground making publication) it was much different.

For the most part we were lucky if there were a half a dozen people we knew who had special needs kids of any sort. "Babys" were still being allowed to die or institutionalized at very young ages. Mother's who "lost" these children recieved little or no support to geive much less get help.

Iep's were the new thing and more often than not a child was excluded from any school. The idea that a person with a severe disability was ever going to need and education or hold a job was pretty much scoffed. Workshops for people with disabilities were dicey with some being little more than unpaid slave labor. But institutions many times were worse.

The idea of accessibility was fought at every turn. I can still remember being spit on, shoved into the ditch for pleading with Sears Roebuck to make their stores accessible, Going to a resturant ment being drug in through the kitchen, and sideswiped in the parking lots trying to even get in. If you traveled you stayed with friends or in a hospital room.

Unlike today with all kinds of electronics Long distance charges made phone calls prohibitively expensive and the few magazines and mimiocoppied newsletters that existed were passed around until they fell apart.

Parents that actually tried to band together were accused of having some kind of attention seeking neurosis. If you challenged a nurse or doctor you risked being arrested. Specialists were all day and further drives. Ronald McDonald houses didn't exist.

Thankfully groupes perseverred and programs were created often on peoples kitchen tables or in church basements. A lot of the money came out of grocery budgets and cookie sales. Sadly even some out of life insurance policies and money from parents that had endured alone so long they left what little they had left.

While I know we have so far to go we have also come so far.

:) nj, a friend of mine printed up business cards that say simply:

Autism. Google it.

She hands it out to everyone who even looks at her and her child funny...with a gentle smile.

Ahhh love it!!!!

Thats awesome, my son is ten and autistic. I'd probably wanna fling the cards at those people.lol!

Laughing and in tears!!!

HUGS!

LOL Me too, I'd be flinging cards at most people. My kiddo has autism (and a whole lot of other issues) as well and will be 12 in 1 1/2 weeks.

nj... I love it! I now have a job working with a child with autism and this child is severe with her behaviors.... each day I worry about getting my hair pulled out or being attacked or bitten and I am working in a public school, not a hospital. I've thanked God each day that I have the job, but I can't imagine what it is like for the parents who stay awake all night long since there are days she doesn't sleep. People have NO CLUE what it's like.

I come home and raise my son with Down syndrome... the child who often won't keep his socks and shoes on in the store. I know all too well what it's like to fight with a child to keep on clothing and to stay in the car seat since he is now smart enough to get himself out.

Sending a big ol hug to every parent who needs one today!

I would just like to offer my support as the sister a hemophiliac and the aunt of a hemophiliac. And as someone who taught children with bleeding disorders at summer camp for years!!! And of course, that also means I know a lot about persons living with Hep. and AIDS/HIV unfortunately as I took care of so many. I AM HERE FOR ANYBODY WHO NEEDS THAT KIND OF SUPPORT. Feel free to message me. I am not up on the latest innovations but I know a heck of a lot.

I also dated an ADULT guy with Asperger's and I read and read and read and dealt with living with him on a daily basis so I do understand that to some degree as well.

I also have dabbled in MD and various cancers in adults.

AND I have family members with CMT.

And a lot of my family has mental illnesses AT ALL AGES. You know you do not get the genius IQs without some madness AKA "touched by the fire". My aunt is retired from NAMI.

So if anybody wants my support, you have it!!!

My very close cousin, Matt (I can say that he is not here), and his wife HAVE THE MOST AMAZING SON, EVAN, who has Downe's Syndrome. I am spelling that wrong. People assume so many things with that disorder. Evan is so much fun. He is incredibly opinionated and stubborn like his daddy's cousin, Terri, and I find him absolutely delightful.

teadipper.... yes my son can be very silly and cute, cuddily and lately he's been wanting to give eskimo kisses with his runny nose... which I have to laugh about now cus I had the runny nose first. Anyway... we have our good days, and our challenging moments and I would not change a thing about him. Everything about him has made me a much better and stronger person. We are blessed to have each other. So thank you!

REASONS YOU SHOULD THINK TWICE BEFORE MESSING WITH SPECIAL NEEDS MUMS and DADS:

1. Some of us have given up on social skills and don't care what we say or do.

2. We're not afraid to have A serious "meltdown" of our own.

3. We are tired and all the patience we have is for our kids.

4. We have A far shorter fuse for nonsense as a result of our responsibilities but A FAR thicker skin.

5. We can get you in a hold/lockdown position in less than 3.5 secs.
6. We can shoot you a look that would make a linebacker tremble in his boots.

7. Chances are it's been awhile since we've had a full night of sleep and that will give us a reason to plead insanity.

8. Our tolerance and patience is for our kids who didn't choose to have special needs, not for someone who CHOOSES to behave inappropriately and is ABLE to control their actions.

9. We're probably already on edge and it would be stupid to push us over.

10. We are sleep deprived and already defensive, and we spend all of our patience on our children, doctors, therapists, social workers and teachers, why would we waste an ounce of it on a total stranger?

11. We've had to fight from the moment of our child's birth so by the time you piss us off we're seasoned battlers and could win a war.

12. We devote our lives to our children and don't need more stress and people who don't understand our life.

My ex husband worked at a pool doing everything you can think of.

He was giving lessons and had an ADHD boy in one class. At the end of each class, he would have them go crazy swimming as much as they could as fast as they could to wind them down for their parents. It worked so well that the mother of that child got a bunch of other ADHD moms in her support group to all request that my ex husband teach a class for ADHD children so he did that over a summer. They loved it. All the kids came home relaxed and calm.

I am successfully treating my child who suffers Inflammation Bowel Disease (specific ulcerative colitis) without the use of heavy drugs such as Predisone and Remicade as doctors always prescribed for a short term resolution. She is operational and drug free with my methods. It has been 3 years she has had it and she is 10. It was tough the first 2 years but finally after hard work she is healthy, pain free, and able to enjoy life again. I am proud of her.

Only 1.5 million have this disease in the US of which only 140,000 children. It is rare and many don't understand it well living a very difficult life.

With determination, research, alot of reading, and a good support network one can find a way to reverse chronic diseases. Knowledge is truly power!

If you have a child that suffers then I really hope you will find a way to help him or her. No child should suffer.

Mommies of Miracles
Specialness!

They say that you have special needs
We don't think this is true,
We think you just have specialness
That flows through all of you!

You have to do things differently
With extra help and care,
But in return you give so much
With all the love you share!

Your heart is made of all the things
That make our lives worthwhile,
For every time that we feel down
It's you who makes us smile!

I think we all have special needs
But you have special ways,
To share the goodness in your heart
And brighten all our days!

So even though some times are hard
We would not change a thing,
Our lives are so much better now
With all the love you bring!

If it is special needs you have
Then this one fact is true,
God made you just the way you are
His specialness shines through!

© Copyright 2012 Amy Comstock

Before you read this keep in mind this was cleaned from six co-operative parent professional conference's where Doctors of all ages drove and participated in 4 weekend long 12 hour+ shift days at a conferences with ZERO re-embursement and roomed in with parents to personally live in their shoes, here their needs, answer questions, tell them how to get the most from the system, and learn what they could do to personally make life easier for everyone. They babysit the kids, brought materials, provided food, and drooped the MD and really bared their souls.

As the parents had bonded with the docs on a real personal level they sat in silent attention the next to the last day in a flip the script training. As the docs read their variose blips through shakeing hands and sometimes tears you could see the parents listening to the professionals side sometimes nodding they knew they were hearing truths and walking a mile in the moccasins of those who often don't get but the non identity of doctor.

After, sometimes crying themselves, parents came up and hugged and applauded the doctors honesty. So I hope it is as profound an experience as it was living it to read it.

I AM THE ENEMY?

I am the smart kid that grew up in the shadow of a hurting family in crisis. Surprise not all of us were rich brats with a silver spoon in our mouths. Many of us were from families always broke from medical bills we didn't create, waiting for a cure, running to the hospital in the middle of the night. Some of us were the "special kid" sometimes just a sibling.

And I am the one that was suppose to be my families saving grace.

I am the kid that got called a nerd because I could pronounce medical terms and do procedures before most of my pals were out of short pants so I got put on the helping professional career track before I even got over standing behind my special brother and not getting one signature of my hero.

I worked all summer as a coach for Special Olympics, or a summer camp, or the babysitters assistant but I didn't get a Medal and barely a thank you letter with my name spelled wrong on it if I was really lucky. I was always the kid in the background.

I am the one that the gangbangers wanted to beat up to get me to swipe drugs, needles, or booze my parents drowned their greif in. I am still the one people try to hustle for free pills at parties.

I am the kid that could not get a prom date because my special sibling might have to tag along.


I graduated with honors but my family didn't bother to get a respite sitter to come.

When my sweethearts parents found I was from a family with "genetic problems" they sent her to Hawaii for the summer and a different college they next fall. I spent the summer alone greiving the loss of my sibling and pretty much watching my family implode.

But I worked in the college cafeteria, slept in the library and showered at the WMCA to get my Bachlor's and into Medical school a long way from home. I was going to find a cure. Or at least a treatment.

But compared to how much I was harrassed, sleep deprived, starved, and generally abuse by what were suppose to be teacher's the real treat was saddleing myself with enough student debt I will still be paying for it and my malpractice premiums when my kids are expecting me to put them in college. I may have a retirement and I may not. Nobody wants to think that we all aren't Dr. McDreamy and maybe one in a thousand doctors ever become a Senior Physician. Most of us will not mention it if we actually wash out in the process or later leave the field.

Oh and that cute little gal that thought I was going t be the goose that laid the Golden Egg ranoff with your husband who was hanging out in the bar so Puleeze don't tell me about abandonment issues or the sadness over looseing your only child.

And if you are seeing me in a clinic or a teaching hospital chances are I have spent from 4-5am fielding on-call service referrals/files,5-6 commuteing to an innercity hospital,6-7 doing rounds and smelling food I don't have time to eat and drinking old coffee,7-8 calling patients that may or may not have basic information so I can even decide what I can talk third party payors into reimburseing me for up to six months down the road, and 8-noon thirty with wall to wall patients that have angry scared parents that that are mad that I can't teach them everything they need to know or do miracles in the 15minutes or less that I am allowed to spend with patient according to the insurance. Forget I order handouts by the cases and expensive medical models you let your kids break or you steal my patient room supplies. Or find some of it in the parking lot with poopy diapers and fast food trash in the parking lot. Yea I pay for all the staff right down to the janitors.

If I get lunch it is with some windbag drug rep that I don't dare piss off because I have kids I know will die with out the free samples or out of a vending machine. I haven't gotten a kick back and I haven't been to see my family in years for get some smanchy medical conference you heard about on the internet.

And We just love the internet that makes everyone way more educated in sound bites than we are in 12 years of training and endless in services.

And that is only if I don't have to tell a family in my mostly deserted office lunch break the worst news of their lives yet again because everything I have sacrificed for is not enough. If I tell you in a public place it is probably because I have had you faint, thro up on me, punch me, curse me, and insult my parentage so many times as heartless I barely wince when I hear it now days.

After that late golf lunch at the country club which is really rounds on the hospital floor I will push through another 50 or so patients, push my signature across a stack of of documents and maybe drag out of the building before the cleaning crew finishes about 7:oo to 10pm..

If I am lucky I will won't have too many patients run into me at the all night grocery while I try to grab something eat. I will carry in my drycleaning where someone cried on me, bleed on me, vomited on me, or any other bodily fluids. I will be hot tired and probably have to take something for a stomache ulcer.

That is especially true if some shister lawyer doesn't try to serve me with yet another lawsuit around midnight because someone only told part of the facts and I had to guess when they were lazy, tired, lying, or too stupid to listen to how I told them to treat their kid, brother, or state ward they can't even get the names straight on.

I am the guy at the back of a lot of your kids funerals. Toooo many funerals where I almost think sometimes I just can't keep doing this. Yea I might seem hard and distant but that is survival folks. If I fall apart who is going to answer your questions and treat your kids?

Yea all of my patient's parents are not real winners. Sometimes I am the only constant in their lives and some of those holidays when the group home staff wants to split I hang out. I also get to go to court a lot when families mess up. That is always a lot of fun.

Forget the fact that I spend my vacations in refresher courses to keep my license, donate holidays doing mercy missions, have depression that makes substance abuse and suicide the leading cause of death among my peers, and most of society thinking I am the 1% when my practice is on bankruptcy proceedings and my now third ex- wife is talking about attaching my car.

Completely forget the fact that I went to bat and fudged the findings or called 38 specialists to find the current treatment that save your kid. Have seen your kid more than I have seen my own. Lobbyied one creep politician and paid exhorbitent association dues so we could fund parent conferences and write free teaching materials and grants in our "spare" time. Ignore the fact that if your kid finally talks, walks, works I don't hardly get a foot note much less a thank you note. And if you never pay the bill; that I have to still pay mine.

So yea I am the enemy.

I'm in, my son is on the Autism spectrum. Along with that, he has bilateral coloboma, low muscle tone around his hands and ankles, and a developmental delay disability. We see a behavioral specialist twice a week, a music therapist once a week, and we go to Easter Seals twice a week for pt and sp. He attends a regular school that has what they call a VB classroom (Verbal/Behavior). In school, he receives sp, ot, and pt. Just had his IEP meeting at the beginning of the month, and we are looking into including music group therapy once a week in school.

I love my little man, he's so intelligent for his age, he is very musically inclined, but also loves everything about the ocean, and places around the world.

Within the last couple of months, he has started to use complete sentences when communicating with everyone. I think that the medicine he had been on for partial seizures, which he no longer has (PRAISE BE), was somehow blocking his ability to communicate fully....that is no longer the case, since he is no longer on it.