Thursday, October 29, 2009

Who decides when it's time to stop a therapy?

I'm not going to go into specifics on what prompted this particular post, but I think it is a really good topic of discussion, and I would appreciate any opinions or personal experiences (lurkers, that means you!).

If your family is anything like mine, you have a child who goes to at least one therapy session per week. Some people, like ourselves, have three a week. Others have even more. Speech therapy, occupational, physical, ABA, TEACCH, and the list goes on and on. And if you moms are like me, you get used to a specific schedule, with a specific therapist. You get to know the therapist working with your child, and eventually you either click or you dont. When you do get that click, you end up with a relationship that is beneficial for a lot of reasons- The therapist teaches you how to do things at home, the therapist takes into account your own experience and knowledge of your child (which a lot of therapists do not do, until they realize that we moms ARE smart enough to take seriously, even if we don't have degrees), and it becomes possible to really create a "program" that all carries over from therapies, to school, to home.

Not only this, but you also develop a schedule that is very complicated. It's hard to arrange everything else (school, appointments, jobs, college) around a few therapy sessions. Plus,there is the issue of transportation, if you only have one vehicle. Luckily for us, there is a van service in NC that is paid for by insurance, but even that has to be painstakingly organized. It has taken us over a year to actually fit in nicely with the van service's schedule/ No more sitting around for hours, or wondering if we'd be picked up at all. Everything has been set, it's all in sync with everything else, and changing it would be a royal pain the the rear.

So my question, to you readers, whether you're moms, therapists, or both, is this: Who should decide a child is ready to be discharged from a particular type of therapy? Should the decision be one made solely by the therapist? Solely by the parent? A combination of the two? And when there is disagreement, what then?

There are a lot of reasons behind situations like the one I'm vaguely describing. Paperwork with certain insurance companies is a pain. I've heard from a couple of friends who work in fields where Medicaid billing is concerned, that they're discharging patients (mental health, so not quite the same thing) because the recent Medicaid changes require prior approval for EVERYTHING, and a whole lot of paperwork too. Personally, I think this is a BS excuse, I'm sorry, but these professionals make a whole lot more than the rest of us- that's part of the job. NOT saying this is the reasoning in every case, but it does seem to be in some cases.

I guess different facilities might have specific requirements as to what skills they can work on. If this is the case, then I can understand a therapist discharging due to lack of new skills to teach. But, in that case, it would be useful to know what the guidelines of the facility are prior to entering therapy, and also to get more than a month or two's notice. More on that in a second, back to my point. If a facility only allows therapists to work on certain types of skills, it all makes sense. But to just say there are no more skills to work on, with no other reason, really confuses me. What about writing skills? Or more fine motor skills. How about working on self help skills? With autistic kids like my son and his little blonde buddy, you never run out of things that need work. They don't get "perfect" and 100%.

Anyway, speculation on reasoning aside, if discharging a child must be done, I think there is a certain way to go about it. Notice is important, because I don't know a whole lot of moms with kids like Jaymes who are going to say "Oh, he's done with therapy? Ok!" Nah, the first thing any of us will do is get on a waiting list for another facility. Except those facilities have waiting lists 6 months long. And that's if you don't have a specific day/time that works. Good luck trying to find an opening for a therapy session on Tuesdays after 5pm. It takes months and months being AT a facility before you even get that coveted time slot.

As moms, we know how our kids will react to things like leaving therapy. We generally have at least a good idea of whether they'll regress and lose skills. So we start freaking out realizing that therapy is going to end soon, and there is not a SINGLE facility with an opening at a time that works. Cue the anxiety.

Anyway, don't mind me. I'm just rambling at this point. The question remains, though: Who gets to decide a child is "done" with a therapy? Because I'd really love to know.

Saturday, October 24, 2009


Ah, October. The weather is cooling down, the trees are changing colors, the leaves are covering up the horse manure in my pasture, which for the record makes it a royal pain in the rear end to clean up. Moving on... Halloween is in the air!

Now, last year was the very first that Jaymes really got into. Up until then, Halloween had been one of those "aww man, mommy is cramming me into a pink bunny suit and I'm a boy, please save me" holidays. But last year, Jaymes finally made a connection. He figured out that those big orange pumpkin buckets are there for more than just cramming his blanket into. He discovered (with much excitement) that when he rang a doorbell, while dressed as a dragon, the nice old ladies in the houses would give him handfuls of CANDY. His hoarding instinct quickly took control, and he gleefully filled his bucket with candy until it was too heavy for him to hold. And then do you think he gave it to mommy to hold? Not exactly. He let me hold it, but he kept one hand on the side of it at all times.

For days afterward, he attempted to get people to give him candy. He would approach, his pumpkin held out, a hopeful expression on his little face. He would squeak out "trickortreat" and wait. Nothing. He'd say it a little louder. Still no luck. Finally, he would bellow at the unfortunate sucker "TRICKORTREAT" and stalk away. Eventually he figured out that he would just have to give up.

Jaymes has started to realize that Halloween is back in town. On Friday night, I was driving home after dark, and we passed a house with one of those huge light up Jack-o-Lanterns stuck to the front of their house. I don't know if it was the size, or just the effect of a huge pumpkin blazing out of pitch darkness, but when we drove by, Jaymes went crazy.


Fifteen minutes of Jaymes babble (not a lot of real words, it's a jibberish he does when he's excited) later, he was still overjoyed at it. It cracked me up, because at the time I thought something was wrong. You would have had to hear the sheer urgency in his voice, then the excitement, to fully appreciate it. Jaymes does not show that kind of enthusiasm often, it was really neat.

So the plans for this year are about the same as last year. Carve some pumpkins at the last minute, feed the scraps to the horse, who will be very pleased. Take photos of horse eating pumpkin. Take photos of Sierra and Jaymes feeding pumpkin to horse. Sierra will be a St. Bernard dog this year. Jaymes will be a dragon yet again. It still fits him, and he likes it, and it's warm. I also could not find a costume in his size that was not paper thin and tacky. He's an odd size- too big for the toddler costumes but too small for the boys costumes. So the dragon it is. It really is a cool costume though. I will be a hassled mommy. My husband will be a grump with some OCD issues. I thought about getting doggie costumes and bringing Echo and Midnight with us, but then I figured they wouldn't appreciate being a shark and a hotdog, and abandoned the idea.

Trick or Treating is obviously on the agenda, in my mom's ritzy neighborhood. Last year I got freaked out by a teenager dressed as Sarah Palin, he scared the bejeezus out of me. Hopefully we won't have a re-run of that one. Jaymes will have a blast, he understands how to trick or treat. My only concern is the one we always have- keeping him calm, and slowing him down enough to not bolt or take from the other kids, or scream. Hopefully he will be able to handle things, he really does love to collect candy door to door.

Wish us luck!

Thursday, October 15, 2009

So, is it always guesswork?

Or are we just special like that? Last week Jaymes had yet another hearing test. For those of you who have not followed the never ending saga that is Jaymes' possible loss of hearing, I will give you a quick rundown. Hearing test, hearing test, hearing test, hearing test. None conclusive, because well, he's autistic! Big shocker there! More hearing tests, hearing tests, hearing tests. Sedated ABR test. Behaviors can't screw those up, because they're asleep. Results showed mild to moderate hearing loss. Didn't seem to match up to everyone's "real life" experiences with the little man. Another hearing test in the booth. Bad behavior. And finally, one more booth test. Sucess! Candy, bribery, and medication got us a good test. According to the fine ladies at the hospital, Mr. Jaymes has moderate hearing loss where high frequency sounds are concerned. But they weren't quite sure. But pretty sure. Or something like that. Mommy? Not sure. Speech therapist? Not sure. OT? Not sure. Nobody has a clue, except Jaymes, and he isn't going to spill it.

So Jaymes will be wearing hearing aids. Green ones, to be exact. He chose his colors. Always green, everything has to be green. Jaymes loves green. Maybe it makes him feel one with nature. You never know.

And now, my question to my fellow mommies, is this: Is it always a "maybe, maybe not?" where hearing is concerned? I guess I just cannot decide if we're doing this hearing aid thing because everyone is grasping at straws, trying to look like they're managing things, or if we're just adding another expensive electronic device that won't do a damn thing. Or worse, make things worse. I just don't know. The hearing thing is something I have never had to deal with, so letting me make decisions about it is worse than the blind leading the blind.

Do any of you have kids with autism and hearing aids? Or just hearing aids? How do you know if your little one needs them? How do you know if they're set too loud, or not loud enough? How do you keep them ON the kid?

I just have this little nagging feeling that this is a result of looking way too deeply into Jaymes ignorning of things that aren't interesting, and that I look like a moron for going along with it. Do I think Jaymes needs hearing aids? I don't know. He seems to hear me, but then everyone who talks to him does so loudly. So he DOES have functional hearing. However, what if the hearing aids can make that hearing which is just functional, into something that really develops his speech and helps him communicate more clearly? It's so hard. I guess I'm just wondering why it's always guesswork, and never an exact. I want to hear "Jaymes has hearing loss. This is how it is. We know for sure." or "Jaymes does not have hearing loss. We know this for sure." I'm sick of maybe, possibly, we're not sure. I want to make the right decisions for Jaymes, but I can't do that without understanding the nature of the problem.

That said, Jaymes is doing pretty well. He got off the bus yesterday in a great mood, just talking up a storm. Long, loud, very serious streams of language. "Mommy, mommy, like hot fire at the fair. Popcorn shrimp, chicken, lobster. Chicken tenders. Smash. Pepsi." Because he saw a blacksmith exhibit at the fair, and because we took him to Red Lobster with us last week for our anniversary dinner.

I have a really cool kid. The boy understands just how important the words "popcorn shrimp" truly are.

Tuesday, October 6, 2009

Thoughts on "1 in 91"

Being TV-less and also newpaper-less, I have been in my own little world of late, so forgive me if this is old news. I have not had a whole lot of spare time, and what time I have is spent sitting in a classroom or cleaning the house, or scooping horse poop out of the pasture. Anyway, my mother in law mentioned the new stats a few days ago, and then I found a thread discussing it on one of the horse forums I frequent. While I remain ambivalent on the specific topic, other issues came up in the conversation on the forum thread.

"Sorry I just don't believe that many kids have "autism". I believe they put every eccentric kid on the "spectrum". Seriously the definition is so ridiculously broad. Half my family would be on the "spectrum". Why do we have to label everyone?"

Can't really argue, as far as the broadness of the spectrum is concerned. It is very broad, and it kind of has to be. Autism is a disorder that is different for every child- it's not a cookie cutter kid diagnosis. Every kid has their own symptoms, their own behaviors, their own quirks. Some kids are savants, some kids will never get out of diapers. Some kids love music, some love lights, some hate stimulation of any kind. Some feel pain, some don't. You have to have a broad spectrum to include all these kids, don't you? I don't believe that half of this woman's family would be on the spectrum, and if that were true, I would sincerely hope she had made some effort to get some evalutation and help if needed, for these family members.

"Well the issue now is they put kids who are a bit different on the "spectrum" now. So if your kid is prone to tantrums or hates loud noise. If he or she has "different" types of knowledge than the average, if they enjoy making lists or lining things up, they are on the spectrum.

I see a LOT of kids. When you see a truly autistic child... you know it. It's unmistakable. Some of the kids i see on the "spectrum" are really very normal kids with some odd behavior. You may have to handle them a little differently but I'm not convinced labeling them and treating them very differently is a great plan. No kidding I have family members who would be on the spectrum by the definitions I've read. They are perfectly "normal" adults who never had special treatment.

I'm a little put off by our desire as a nation to give every difference among people a name and a treatment plan."

Most of the time, Jaymes fits this stereotype. Most of the time. Sometimes when he's calm and happy, you really can't tell. I know quite a few kids with autism who are very severe, and sometimes you still can't tell. Now, if you hang around them long enough, it's becomes apparent, but you can't always detect autism at first glance. As far as "normal" kids being given an Aspergers diagnosis... I guess I just am on the fence. On one hand, I agree that some of the adults I have met who claim themselves to be Aspergers seem just fine, and it irks me when they use it as an excuse to be bitchy. However, in Aspergers kids... I trust parents. If the parent thinks something isn't right, it probably is not. That's just the truth. Parents know their children, and I don't think any of us are likely to go to the effort of getting a diagnosis as final as autism or aspergers if it isn't true.

"And you would be surprised how many parents WANT their kids to be special needs. It gives them excuse to be bad parents. "There was nothing we could do. He was born with Austismdisorderwecantpronounce so there was no stopping him from setting those fires and stealing those prescription drugs."

Yes, it's SO much fun to be the parent of a special needs kid that parents everywhere are clamoring for a diagnosis. Whoo! the excitement of constant doctor and therapist appointments, the diapers on kids way past diaper age, the meltdowns in public. What a blast. People who make comments like this have no clue. Most of the autism parents I know do not medicate, nor do they make excuses for their kids behavior. My kid has autism, it gives me an excuse to be a BETTER parent, not a neglectful one. An autism diagnosis signals the start of yearsof hard work and struggle- hardly an excuse to be a lazy parent.

"Just to be clear I totally get that there are kids with this issue. I even get that there are varying degrees of autism. However... I see kids labeled on the "spectrum" that really are totally normal in their eccentricity. Sure not like all the other kids. Maybe a bit ummm odd. But normal enough for sure. Easily normal enough not to be labeled.

The grandson of one of my dear friends was labeled on the autistic spectrum because he had a fit over shirt labels. He would freak over it. He had other little tactile preferences that would cause him to tantrum but honestly he operated totally normally in every other way. I said at the time "so take the damned labels off his shirts and be done with it". I couldn't see why anyone would want to give a kid a label over what amounted to a bit of a obsessive preference."

A label is like a Disney Fastpass. A label gets you on that ride faster than you'd get on without it. With autism, early intervention is key. The label is necessary sometimes.

And then the comments go into people posting the "signs of autism" list and picking one or two traits off of it that resemble their own quirks, then saying "Oh well I must be autistic too." This is ridiculous. Kids are not diagnosed by having one quirk. A kid who spins in circles does not necessarily have autism- he might just like spinning in circles. A kid who can't sit still could have any number of issues, beginning with being a typical 3 year old. It's when a child resembles EVERY sign on that list, that you get a true diagnosis. So no, just because some 19 year old on the internet doesn't like loud noises, doesn't mean she's autistic.

"Cripes.... Reading some of the "defining characteristics" of autism.... I guess I'm autistic.

So are they actually trying to stick children who will only wear one shirt or one hat etc into that label? I know very few children who didn't go through some sort of stage like this. My brother had the "jungle shirt" phase, the "cowboys hat" phase and the "actual cowboy hat" phase. He refused to take any of these articles of clothing off or wear anything else without having an absolute meltdown. He grew out of it after a month or so for each episode.

I like/liked lists, categorizing things etc. I have a lot of fun playing games that involve these cocepts (bejeweled, noah's ark etc) If a lot of people didn't like doing these things, those games wouldn't be there for us.

I dunno, I think it's oversimplification. It makes it harder for those of us with REAL issues to get the help we need and be taken seriously. I get looked at funny and criticized when somebody knows I have ADD or am Bipolar(II). It's frustrating, my mom and teachers never wanted to put me through testing because they didn't want me falsely being categorized, and I had to do it on my own. Now I'm so much happier for the help I've gotten, I just wished it had been sooner."

Apparently autism isn't a REAL issue. Someone should tell our kids this, eh?

"when you look at the lists of clinical symptoms for a condition, some of them are vague, and yes, it can be hard to differentiate them from "normal but atypical" behaviors. Part of that is because we diagnose based on categories, but real life isn't categorical - it's a continuum. Also, a "clinical" diagnosis (one based on signs and symptoms and evaluated by a physician, not on a laboratory test) usually requires meeting a set number of those symptoms, in recognizable patterns, not just one or two.

For example, I have several recognizable symptoms of a genetic condition called Ehlers-Danlos Syndrome, which is a collagen defect - but I don't "have" EDS because I don't have enough of the symptoms to make a clinical diagnosis (yes, this is what we do in the office for fun... diagnose BXM with genetic conditions ). However, if the diagnostic criteria were to change to include other symptoms or patterns, I may indeed "have" EDS. There is a laboratory test for EDS, but it's confirmatory, not diagnostic - were I to fail the lab test, I could still "have" EDS based on the clinical diagnosis.

It's also remarkable what a good doctor can see - my boss immediately recognizes amazingly subtle assymetries in facial features, for example, that are meaningful but not necessarily that "different" from "normal." His diagnoses are based not just on the clinical symptoms but on the entire gestalt of the individual patient presented to him. A good physician will not diagnose autism or ASD based just on a list in the DSM-IV - otherwise computers could be doctors. "

Running out of time, jaymes is almost done in PT and will be out here in the waiting room- so I'll end with that good post above!

Sunday, October 4, 2009

My Busy Kit

This is horrendously overdue, my most sincere apologies to Lorraine, of My Busy Kit. She was kind enough to send me two My Busy Kits for my kids to try out, and seeing as the kits have been SUCH a hit I meant to have made a little mini review thing of them a long time ago. Between school, Jaymes, whining, stressing, school, Jaymes, STRESS, etc... Well obviously it hasn't gotten done. Until now! (Click to read the full review)

Friday, October 2, 2009

Monkeys Cause Autism... Er, wait. No they don't. Uh.. Just read the story!

Courtesy of the Facebook conversation I've been having with the wonderful, inebriated Kelley of Magneto Bold Too

For many years, there has been heavy debate on what causes autism. Some people, like myself, believe that it's all about genetics and some other random something. Others believe that it's all about the evil doctors and pharmaceutical companies who make poison that the evil doctors forcibly shoot into our innocent little spawnlets. Who knew this debate could be found in the jungle too?

Disclaimer: This post is not intended to generalize all monkeys. Some monkeys practice their beliefs respectfully of others, and do not impose their Bananariffic beliefs upon everyone in their sight. This blogger respectfully acknowledges these monkeys, and thanks them for not being like their insane counterparts.

I visited a (super-sekrit) jungle awhile back in an effort to learn more about the behavior, beliefs, and culture there. Actually, it was mostly just to observe the resident monkey culture. My findings were very interesting.

The first thing I noticed is that while the majority of the jungle creatures took their young to the appropriate, licensed, animal-medical professional when they fell ill, the monkeys did not. Anacondas, parrots, and leopards (among others) seemed to rely upon Animal-Pedatricians and their extremely effective medications while monkeys either visited the local whole foods tree or the witch doctor.

The witch doctor, of course, was an elderly pink elephant who was experienced in the use of herbs, detoxifying foot baths, and other homeopathic remedies but who had never undergone any formal medical training. He had, however, attended the local community college and gained a degree in Elephant Massage and aromatherapy. He adamantly believed that the "real" doctors were evil, and only in it for the money. He often discussed this at great lengths with his monkey customers, who heartily agreed and spread the word. It did not take long until most of the monkey population had decided that Dr. Pink Elephant was the only safe practitioner to take their children to and that the Toucan Pharmaceutical companies and doctors of all specialties were simply selling dangerous poisons to their patients to make a quick buck. Some monkeys would go so far as to claim that the pharmaceutical companies were intentionally selling bad Goatberry Juice in their vaccines against the Duck Flu, just to kill innocent children and make millions. As a result, the Witch Doctor became filthy rich. Insurance policies did not cover his treatment, and they were not cheap, so he was racking in the bucks.

Though the other jungle animals tried in vain to explain the many reasons these theories were not logical, the monkeys could not be persuaded otherwise. They did not understand that many of the Animal-Pediatrician's patients were on Jungle Medicaid, and that Jungle Medicaid only pays a very small portion of the normal charge for any procedure, vaccinations included. Nor did they understand that most of the Animal-Pediatricians loved children, and would never think of harming one.

The jungle animals did their best to avoid the preaching monkeys, and continued to take their children to the doctor when they were sick. Sometimes a jungle animal child would die of a serious illness, and sometimes they did have reactions to their vaccines that make them sick. The monkeys jumped on these cases with excitement and actual joy, because in their minds, it proved their point.

One little zebra had her MMR shot, and reacted with a high fever and rash that lasted for 8 days. She had to sleep in the hospital tree and have medication. Her very distraught mother sat with her, and blogged when she was asleep. The next day, the zebra mother got an email from a friend that her zebra baby's illness was being discussed on a monkey autism blog full of monkey zealots. Indeed it was true, and though the baby zebra did not have autism, her brother did. The monkeys discussed the baby zebra's hospitalization after her shot with great glee, and very little respect. They discussed the mother zebra's parenting, and concluded that she was a terrible parent for vaccinating her children and that the little zebra was sure to get autism soon. Thankfully, upon followup with the zebra family, the little one had gotten well, and a year later, had not developed autism at all. The only lasting effect of the ordeal on the family was the memory of the offhand way the baby zebras sickness had been discussed and the blame placed upon the mother zebra. The mother zebra had had her first taste of autism monkey zealots, and did not like it. The zebra mother did, however, acknowledge that vaccine reactions happen, entirely unrelated to autism.

The mother zebra continued to vaccinate her little ones, and when they were sick she gave them medication from the Animal-Pediatrician. While her children recovered quickly from their ills, she observed other monkey children dying from the very same diseases. Monkeypox, the Munks, The Monkeasles. Diseases which had been nearly eradicated by vaccination were coming back to the jungle because the monkeys refused to vaccinate. Luckily for the other jungle animals, the Monkeys were the minority, and most of the jungle babies were properly vaccinated, and the illness were kept mostly in check.

The zebra mother spent a lot of time online, reading autism blogs and about how different parents helped their autistic baby animals. Some accepted their autism as part of them and praised it as a gift from the heavens. Some ignored it, preferring to focus on the child, not the disease. Some became martyrs for their children, giving up everything they loved about life and making autism their whole world. Then she found a monkey blog, and was horrified at what she read.

The monkey blogger discussed his child in a cold, cruel manner. Rather than talking about the child's accomplishments, he focused on his faults. He commented on how his child "smeared shit" all over the place, and used similar crude and disrespectful language as he described his baby monkey. The zebra mother was shocked that a parent could feel this way, and write about it so negatively on the Junglenet. True, sometimes the zebra herself complained about things, and she readily admitted that autism isn't always a lot of fun, but she could not imagine saying such things about her own little zebra foal. She did not consider him a burden, someone who "shit on things" or "acted like an animal. She had adopted a different sort of mind set. She had embraced another bloggers motto- "We're here, we're quirky, get used to it." And while the zebra agreed that everyone had the right to feel any way they liked about autism and their child, she found it very sad to see such negatively and disdain from a parent about his cub.

I'll share most of my observations another day, this is plenty for now! I will say, however, that this blogger will continue to vaccinate and will continue to urge parents of newly diagnosed children to run, not walk, away from the "monkey" parents who might attack them in their fragile, post diagnosis state of mind.

The next chapter of this story?