STABBY

So.  Someone has done it again.  Claimed that parents will “make up” an Autism diagnosis in order to get services.

Yeah–cause this is a fuckin JOYRIDE.

And while i realize that any asshat with a sociology degree can publish a paper, what worries me is that people then READ said paper, especially when it’s published on some parenting website (and no i am NOT going to publish the link because i don’t want to direct traffic to that stupid article–but you can check out my girl Jill H Smo’s FB page and the gazillion comments we made about said article) and then they think, “oh, those parents!  They just SAY their kids have autism and then steal resources from my little Suzie or Tommy.”

These are the same parents that don’t like mainstreaming, or the fact that their kids have to SEE anyone with a disablity and actually interact with them.

Ok–maybe i’m overextending my irk–but you KNOW what i’m talking about.

Those parent who comment about how little Suzie isn’t getting a quality education have NO IDEA what one has to do to even get a diagnosis.

Having to go against your own Pediatrician because he says your son is “just being a boy” implying that you’re just a worry wart when your kid doesn’t even say mama, or have any sense of danger.

The amount of paperwork one has to fill out–answering the SAME FUCKING QUESTIONS EVERY TIME.  sending each set of papers off to different organizations and hoping they dont’ get lost in the mail.

Having neither of the two regional centers claim you because you live in this grey area that neither can agree who covers, and having to threaten them with a lawyer to get SOMEONE to start the paperwork chain.

Making endless phone calls to physchologists, pdiatricians, regional centers, school districts…

Waiting MONTHS just to see these same people–where you are inundated with MORE PAPERWORK with the SAME questions.

Then waiting MONTHS while they go over all the paperwork and observations and bubble sheets from various parent surveys

All the while paying out of your own pocket to get your kid SOMETHING like speech or occupational therapy and running up your credit cards that you are STILL paying off 5 years later.

And then FINALLY you get the school district, or regional center or SOMEONE to recognize that your kid has an issue and needs services.

And then you wait MORE MONTHS until they can schedule that initial IEP, or go to various meetings and fill out MORE paper work to enroll your child in ABA therapy provided by the state only to wait a few more months before you actually get someone in your home to observe and write ANOTHER report.

In the meantime, the birthday party invites stop arriving, the playdates come to a halt, you struggle to figure out how to go grocery shopping or navigate through Target, and you NEVER go out to eat anymore, and you have to listen to parenting advice from every well-meaning friend and PERFECT STRANGERS and you realize your kid will have to fight these idiots FOR THE REST OF HIS LIFE, even after you are gone

And you cry yourself to sleep, and you walk around in a daze, and you feel completely isolated, and the doctor prescribes various pills, and you’re lucky to get a shower regularly, and the only real adult interaction you get with your husband/partner is after the kid finally sleeps (if you’re lucky) and you both collapse in complete exhaustion and the thought of having a conversation, let alone “marital relations.”  And you read all the statistics about the divorce rate among parents of special needs parents, and you freak out during every fight and tense moment.  And then the doctor prescribes MORE pills.

And you think–“Seriously–it’s easier to get vicodin than an Autism diagnosis”

And then finally the services start trickling in, and his speech improves, and his behavior improves, and he can finally sit during circle time (a year later) and a few more playdates start cropping up, and respite–BLESSED RESPITE–allow you to remember the man/person you married, and you breathe. I mean BREATHE.

Until you read about budget crises everywhere and the fact that the first place they are gonna start slashing funds is in both education AND mental health services.  And you realize that EVERYTHING your child gets, that helps him improve and be part of a society that is already giving him the stink-eye, could DISAPPEAR in a heartbeat, or senate budget hearing.  And the doctor writes ANOTHER prescription.

And then some asshat comes along and says you’re faking it.

Ok–yes–there are stories about “some” women who demand services for their kids who really don’t need it.  And if i had a chance–i’d give them a piece of my mind, only because they give the rest of us a bad name.  A REALLY BAD NAME.

You know, we don’t always write about all the difficulties because it makes it all sound so daunting–as if our world collapses. Which it does, kinda.  Because we know that parents new to the diagnosis  doing late-night internet searches looking for SOMETHING that will make them feel like they aren’t going crazy, will sometimes find our blog–and we want them to know that you’ll get your head above water eventually.  because we know how absolutely FRIGHTENING the whole thing can be.

But maybe we do need to share more of it–because there seems to be this idea that a diagnosis of Autism is a grand day in the park leading to the life of Riley.  Because they don’t know.  THEY DON’T KNOW.

It is work. and unending marathon of advocacy and research and the knowledge that you have to stand by your kid to defend them against people who read these silly articles and think they know everything there  is to know about Autism.

But–and here’s the kicker–it DOES get better–although it takes a few MORE months to figure that one out.  And eventually we realize we are survivors–not from autism, but from the judgement of others, including douchebags with sociology degrees and their 15 minutes of fame.  and at that moment we usually say something like–“who the fuck are you?” and go on with life.

Because frankly–we have more phone calls to make and paperwork to fill out, and its time for therapy.

Categories: Autism | Tags: , , | 14 Comments

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14 thoughts on “STABBY

  1. AMEN, SISTAH.

    And by the way, anyone who thinks I am “making up” my kids’ diagnoses are more than welcome to come here and spend some time with my kids. While I go take a nap.

    • blogginglily

      That is SUCH an awesome idea! BABYSITTERS!! We fakers can all go get drinks!

  2. SING IT, SISTER!!

  3. I’m totally stalking @jillsmo now, because she leads me to the AWESOMEST people. (And that you would be you, my dear.) Took the words right out of my mouth, my heart and my fist. :-)

  4. You just summed up my feelings exactly! I especially like where you said that our kids survive people and society’s judgement, not autism. I just had a conversation with my husband about this. I was saying that most of the problems kids with autism have are a direct result of our society. If we could tone down a lot of the sensory stimulation and accommodate them more, and accept and respect them a whole lot more, I don’t think life would be nearly as hard for them as it is now.

    I LOVE this post!

  5. On the NOSIE!!!! Holy hell- I saw that article too and thought every single word you wrote. Stubby is the PERFECT title!

  6. Thanks stupid iPad. I MEANT Stabby!!!

  7. The best thing to do is ignore idiots like that. Do people really think that we as parents, can manipulate doctors into giving us bogus diagnoses? If my son was just acting like he had an ASD, I’d move to Hollywood because he’d be the best actor I’ve ever met. Some people just have too much time on their hands and not enough common sense.

    • Jim–people really DO think some of it is manipulation–especially when your child is high functioning. My son’s services have been questioned by the unknowing–and i know i’m not the only ones. This argument seems to be gaining ground and popularity–which is why i lashed out so vehemently. This idea is no different than people who bitch about ADA rules because it inconveniences them. So while i will not attack every asshat with this argument, i am surely not going to remain silent and let them run rampant over my son’s rights.

  8. A-freakin-MEN. And lucky us, now that we have been thru all that and have our services in place, we may need to start our entire process over again soon.

    • same here–Regional center will be changing its policy come July due to the new healthcare law, so now instead of wrangling with them, i may have to wrangle with insurance. yay.

  9. It’s easier to get Vicodin than an autism diagnosis! Yes! But wouldn’t it be super fantastic if they’d just give us both at the same time?

    I faked my kids’ diagnoses (and in the case of my daughter that extra chromosome is super tricky…) because I love love love sitting through endless hours of therapy. So much fun!

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