My Frustrated Mommy Rant

The BBQ Pit
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ARRGH I am so frustrated right now! Bunch of so-called specialists offering a label but no help. A child neurologist diagnoses my daughter as “austistic”(but not very specific on where in the spectrum she is) and says we need to send her little 3 year old butt to school now, where to get her tested for admission into the school, blah blah. Okay, we go…at the admissions office, they try to test her reflexes, eyesight, motor skills, yadda yadda but guess what? She’s being tested for the fucking place because she’s different! That means their hearing test where she’s supposed to point to the blue airplane won’t work with her! She couldn’t give a shit less about blue or airplanes! So, now I have to track down an even more specialized specialist to get her hearing tested…(Gee, I’m still kinda new to the area, could you MAYBE give me a list of places/people who do these tests instead of just ushering us out the door?)

To top it off, I get a call from a woman at the child neurologist’s office this morning “Regarding Katie”…okay, I call her back. Twice. The first time, she couldn’t hear me and so just hung up on me. (Is it too much to ask for someone in a professional place to say in a case like this, “If anyone is there, I can’t hear you. You’re going to have to call back.”?) Is it regarding Katie? No. It’s regarding money, and the fact my insurance company is being slow about paying them. Could she have said it was regarding an outstanding bill? I think so.

By the way…I am getting a little fed up with people making assumptions about my daughter when I mention she was diagnosed as autistic. (She’s a non-verbal three-year-old, which can be a blessing in itself, but she’s not going to say “hi” back, tell you her name or do any other stupid toddler tricks.) She’s not the three-year-old female version of Rainman, she’s not going to be good with numbers unless she finds an interest in them, and I doubt she’ll be smarter than her older brother. Well, wait, she IS female, that in itself may raise her IQ. :stuck_out_tongue:

I feel lighter with that off my chest.

P.S. Wasn’t sure where to put this, but I thought this was the most likely the place for it.

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Aww. I’m sorry you have to deal with bureaucratic idiots.

RE: your lovely daughter - a friend of mine worked at the “Autism Society of MI” for a long time, and so I heard about the various types and so on. One piece of advice is to hook up with such an organization - they can proove to be wonderful allies when dealing with school districts and so on.

best to you.

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Sorry you’re having such a hard time. I just wanted to pop in here and wish you all the best in getting the proper services for your daughter. I work with adults with disabilities, and although I’m not part of the admissions process, I do know that it can be frustrating and that waiting lists tend to be long.

I also wish you luck in fighting the urge to snap at people who don’t understand autism. I work with adults with various disabilities, and I think autism is one of the most difficult to explain to others. I get a lot of people asking me if the “autistic kids” can do “neat stuff like Dustin Hoffman from that movie.”

The funniest (and most ignorant) thing anyone ever said was when I was talking to a good friend of mine about my work. She said, “Wow, I admire your work. How do you, like, talk to those people?” I had this urge to say, “Well, it’s tough. The disabled only respond to Swahili, and I’m behind in my lessons.”
I can’t imagine what you’re going through right now. The only thing I can say is: become as educated as you can, trust your “mommy instincts,” and try to keep a sense of humor.

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Tequila Mockingbird,
Been through all that fun and more w/ my younger sister Tara.She is now 21 and for the last 18 years I watched my parents go through exactly what you ae going through.We live in Illinois and my mother is very active in local parents of disabled/autistic children groups. When you finally do get your daughter placed in an educational program, ask the teachers about parents groups. Build a support system w/ other parents…you’ll get a lot of help w/ how to deal the local school system,etc.Some parents groups even offer special items-such as sticker to let emergency personnel know that there is an autistic child in the house/car/etc and that the child may not respond to verbal commands.
Keep your head up TM…I’ll be sending good wishes your way.

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Sounds like a lot of shit to deal with, and I’m truly sorry. I hope that some good comes out of this. Good suggestions so far.

I had a thought–I wonder if calling “regarding Katie” was regarded as much more respectful of privacy. I mean, to call saying “A problem with payment” or “outstanding bill” is exactly the kind of answering machine message I wouldn’t want my roommate or neighbor or older kid to hear, you know? It’s aggravating plus it makes me sound like some kind of deadbeat. Maybe that’s what her thinking was, anyway, even if it was ultimately a misjudgment of your own feelings on the matter.

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About the hearing test:
You want an audiologist. They have the special training to test in any number of ways. My son needed a hearing test at age 12 months. They did a “brain-evoked response” test. Required him being sedated and hooked up to an EEG. Then they played sounds through headphones and watched for a change in brainwaves. Having him sedated wasn’t something I looked forward to, but we got a VERY accurate test result.
This was almost 20 years ago, and they probably have something much better by now, but it could be an option.
YMMV
Good luck!

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And I forgot, email Euty. He has some experience that could be invaluable.

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Thanks for the support all. I found out my cousin’s youngest son also has autism. (But further on the scale than Katie) She gave me great ideas, but since she’s in another state, nothing concrete. (I really REALLY need a second opinion on my girl now…it’s like a doc told me “she has cancer” but not which kind…figuring out where she is in the scale would help me. Anyone know of autisitc support groups in the St Louis area?)
On a pleasant note, Katie did something this morning that made me laugh to no end…
One of really annoying older ladies walked up to her in the store. Started cooing all over her and made a move as if to pick up my blue-eyed BIG red-headed child…
Katie was in NO mood for nonsense, and punched the lady right in the face. Damn, I wish I had her balls!

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A nice honest rant, not too pissy, I give it a 7.5

(yes, this is the place for it :slight_smile: )

Do you need me to tell you that, sitting there at your keyboard, you’ve got the Mother Of All Medical Resources literally at your fingertips, by which I mean the Web? Know how to use a search engine? :wink:

http://www.google.com Put in words and phrases, like “autism” and “autism hearing loss” and “autism support group St. Louis”.

Keep up the good fight, Tequila, you’re the only thing Katie has between her and the good doctors, who in my experience are not God. (I’m such a cynic…) “Been there, done that”, with a 16, a 13, and a 10-year-old, and I literally can’t count the number of times a doctor somewhere told me, “Blah blah blah” and I went, “–huh?” and went home and looked it up in the Merck Manual and went “–huh?” again. If only I’d had the Internet back when The Cat Who Walks Alone had the mysterious white blood cell count, I’d have given those doctors what-for… and the time Bonzo had the weirdo fever…
Chin up! :smiley:

Oh, and the Number One piece of advice I can give you is–get second opinions on everything. Yes, make a damn nuisance of yourself, annoy the hell out of Turbo Dog with your paranoia, “honey, can’t we just do what the doctor said?” “No, I want a second opinion”. Stick to your guns, you may be grateful 5 or 10 years down the road. Autism is a very hazy field, and one doctor’s Gospel Truth is another’s doctor’s “Well, yes, we used to think that but now we know…”

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Dang! I left out the most important thing.

Don’t let Katie get stuck with the label “autistic” just on the say-so of one neurologist. That’s what I was getting at, with the “second opinion” thing.

Once she’s labeled as “autistic”, she’ll be automatically shunted into (and out of) various programs, and won’t you all feel stupid when she gets to be 14 or 15 and suddenly everybody realizes, “Hey, she wasn’t autistic after all–she was just the strong silent type!” or “Hey, she just had a hormone insufficiency” or “Hey, she just had a Nutrasweet sensitivity!” or–I dunno, you get the idea.

So don’t assume that that one neurologist is God and God hath spoken. Get her some more tests before you go around saying, “Yes, Katie’s autistic”.

And I dunno that much about autism, but I do know 3-year-olds, :rolleyes: and I’d be real hesitant to make a diagnosis of autism based on behavior. Threes frequently have their own private agendas, baffling even to Mommy; if I’d rushed my kids to the neurologist for tests every time they started demonstrating odd behavior, they’d all have been on heavy medication years ago (and I think The Cat would probably be in a mental institution. Seriously. She was One Weird Little Kid.)

Do you have other kids? What was she doing that make you think, “Better get this kid to a doctor for tests?”

(Don’t worry about this being the Pit. It wouldn’t be the first time a rant devolved into a support group thread. :smiley: )

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I have no idea where Eldon, MO, is, but I found this site.

Good luck!

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3 yo is awfully young to be dx’ed as on the ASD. I’ve got a 3 yo who got dx’ed last August. I’m taking the dx with an entire packet of salt.

It’s worth networking to find out how lightly the hcp you saw dx’es. I now know that the psych we saw sees an incredible number of autistic/Aspergers kids ;). That was reassuring to say the least.

I’ve had one kid who at 7 yo has just lost his autistic dx. I never felt it was accurate for him and I used to just roll my eyes at the hcps who said he was on the ASD.

Has Katie been seen by an occupational therapist? My younger kid has been seen by 3 now and not one of them found sensory issues which makes me believe he is going to be fine in the long run.

I totally sympathise with the fucking runaround that it is to find people to work with your kid! It was a fulltime job for me last year. This year is going more easily though.

Lastly I apologise if Katie is classically autistic. I don’t mean to increase your pain by one iota. It’s just been my experience that dx’ing a kid as autistic primarily because of speech delay is stupid. I’ve accepted the HFA dx for my younger one because it gets him services. That’s really worth looking at BTW. If we don’t allow them to label him as HFA, we don’t get a bloody thing for him! He still needs speech and a teacher aide ATM

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Primflora…(hug) Not sure if you needed that but I sure did! No occupational therapist yet, but a good place for me to go NEXT!

Actually she’s not…or at least IMHO. She gets excited and/or frustrated and does a lot of the classical “hand flapping”, and has very delayed speech, (a three year old with basically a 3 word vocabulary) but she’s VERY interactive and alert to her surroundings. We took her to the zoo and she thought the goose that tried to eat her finger was hilarious. Other than riding the train, the rest of the zoo was just kind of an excuse to be outdoors for her. I could go on with boring details about her but isn’t that my duty as her doting mother? I’ll spare you, for now… She does communicate, in her way…she’s LOUD when she’s happy/pissed off/playing/waking up (definitely NOT a morning kid) etc, just not a lot of words. When she’s thirsty, she puts a cup in my hand. She’s hungry? She puts a can of spaghetti-o’s or whatever it is she wants in my hand…she even puts a specific video she wants to see in my hand (followed by a cute “uh” kind of grunt.) Okay enough of the “mommy” diagnosis…but YES I demand a second opinion for her! She, I dunno, marches not just to the beat of a different drummer, but to the beat of a polka band. I really enjoy her and being with her (she’s still the sweetest little thing I’ve ever known, and this comes from a woman who, the mere thought of “girl-children” gave me the screaming mee mees.) But hey, I never wanted “normal” things…kids included!
(Where the fuck did that tangent come from???!*Sob Sob I need a support group…)
BTW…we do have a 6-year-old boy…who I swear I see more of the stereotypical symptoms of autism in…he’s the one who’ll run in circles repeating himself. Aren’t kids just the coolest!

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Eh, sounds to me like you’ve got a couple of absolutely normal kids, Tequila. Really. Besides my own three, I spent a lot of time over the years with other people’s kids, trading babysitting, play groups, Sunday School, etc. you get the picture. If you showed me a Three who did “hand flapping” and didn’t talk much, but who seemed alert to her surroundings and interacted with people, my first thought would NOT be, “Oh, that kid’s autistic”. I mean, geez! Just because of the hand flapping? Shit, I indulge in a fair bit of hand flapping myself, and I’m forty-something. :smiley:

My oldest, the Cat Who Walks Alone, is now 16, but when she was 2 and 3, she was so totally self-contained, she did make me a little nervous. She never needed to sit on Mommy’s lap, she always made up her own mysterious little games to play that nobody else could understand, she hardly talked except to ask for something. But it never occurred to me that there might be something wrong with her, she was just “quiet”. And my mother, having raised 4 kids, told me, “Honey, be thankful for small blessings”. So I was, and The Cat is still very self-contained and quiet, but normal.

Now, your Six, the walking around in circles talking to himself, that does sound more like autism, but then again, I’ve known perfectly normal Sixes that indulged in repetitive behavior that were never diagnosed as autistic. Sometimes a highly strung kid just uses repetitive behavior to help get himself under control, and I’ve seen them do it (although not my own, but other people’s kids). And those kids turned out fine.

You need to start surfing the Web, babe. :smiley: “Knowledge is power”.

And don’t be too quick to jump on the “get this kid on medication” bandwagon. Give your kids a chance to show you what they can do, before you start pushing the pills and sticking the “disabled” labels on them.

Oh, and I just remembered what I found out when The Cat was Two-ish and not talking much. From probably Dr. Brazelton, the fact that a kid who is slow to talk is usually just working on something else, some other mental faculty. We now know that apparently The Cat was doing math or something, working on whatever portion of the brain is devoted to math concepts, because she’s the only one on either side of the family who is taking (and passing) Pre-Calculus, and looks like she might need (gulp) actual college training in engineering or physics or something.

So maybe Katie’s just working on math concepts, instead of verbal abilities, and she’ll amaze you someday by designing (and building) the bridge under the Bering Strait. :smiley:

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…and of course, it’s going to be all the more amazing for being a bridge under the Strait… :rolleyes:

[more coffee…]

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I have nothing of relevance to add to the child side of this, but thoughts on insurance and all are abstract brain farts:

Learn all you can about your insurance.To remain in the dark on this subject will only haunt you. The insurance company will never ever ever willingly part with money and they really don’t care about you anyway. Shocking news, isn’t it?

When you actually talk to someone at your provider that has all her marbles,( it will take a few hundred calls to find someone that isn’t brain dead) ask for her extention or full name so that if you have any questions/problems in the future, you can possibly talk to her and actually have a rapport.

Ask if you need referrals in order to be covered. Ask for the handbook ( whatever they call it) about what exactly is covered.

Keep notes on whomever you talk too, perhaps in the same notebook so as everythign is together and easy too find.

Don’t worry too much on the medical bills that are not covered. Really. As long as you make a minimal payment on them, they cannot come after you. ( A friend of mine had a $700 bill owed for an ER visit, naturally at a time when she was cash-poor. She paid $1.00 a month for the longest time until she could cough up more dough.) Naturally, your mileage may vary.

Along this thought, if you do have bills accumulating, you can call the accounting department of the doctor’s office and ask to set up a payment plan. Tell them you can only afford X amount ( a really low amount) a month right now and they will set you up with a payment booklet. ( We did this with the extra bills after both our kids were born. They were interest free loans.)

If your daughter is prescribed with any medication, ask for samples.

Change of subject: Regarding Katie’s supposed autism.

I read an article in the late summer/fall in either Parenting or Parents magazine on how some children who were diagnosed with mild autism were do to an allergy to dairy products. I don’t have the magazines anymore, but I’ll see if I can find more. Who knows, couldn’t hurt to check it out.

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Was it on this? “The Autism/Leaky Gut Connection”?
http://www.isn.net/~jypsy/diet.htm

Google: “autism allergy dairy”

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Duck Duck Goose, the more I read your words here, and particularly in this thread, the more respect I have for you. Your kids are fantastically lucky.

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