LIFE IS A SPECTRUM
We're still big fans of our new iPad, the biggest drawback being the sheer volume of apps out there that we have yet to try, a lot of them completely FREE. I thought that as Billy finds his favorites, I'd spotlight them, in case you're looking for a great distraction, reward or skill-builder.
AutismXpress
FREE
A simple program that animates faces with different emotions. Choose “Happy” and a goofy cartoon laughs. Choose “Angry” and a red-faced blob bares his teeth, frowns and growls. I'm not sure how educational “Gassy” and “Burpy” are but Billy loves them.
Dr. Seuss books
$3.99 each
We have Oh the Places You Will Go, Green Eggs and Ham, and Dr. Seuss' ABCs, and each one has been played over and over by both kids. The great thing about these books is the interactivity. When you touch a picture anywhere on the page, you see and hear the word associated with it. You can choose “Read it myself” or “Read to me” options.
iGoPotty
FREE
From the geniuses who brought us Pull-ups. Billy LOVES LOVES LOVES this app. We have absolutely no problem about going to the potty now. When I click a button it sings, “I'm a big kid now!” and he stops whatever he's doing and starts dancing along to the music towards the potty. If he goes, he gets to click “I used the potty!” and gets an animated “sticker.” After nine stickers, the app reveals a new game, such as a drawing program or a matching game.
Kindergarten.com Apps
$0.99 each
ABA-based flashcard game designed to help kids categorize objects and people and develop more functional language skills. We've noticed a bit of echolalia/scripting after use of one set a few times, but luckily, there are more sets out there. I would recommend using this one as a jumping-off point for conversations, even if they get the answer “wrong.” For instance, if Billy is asked to “Choose the one you sit on,” and he points to the baby, we talk about what would happen if we sat on a baby.
Look In My Eyes
$2.99
Interesting practice for making eye contact; suggested for kids with high-functioning autism or Asperger's. Close-up photos of smiling kids appear and within a second or two, a number flashes in the center of the child's eyes. Billy's job is then to click the right number on a keypad. If he gets the number right, he earns “money,” which he can then spend to buy food in a cartoon fast-food restaurant or buy furniture – either way, he doesn't care anything about that part. I haven't noticed any definite increase in eye contact in the real world but stay tuned ...
Solar Walk
$2.99
Beautiful tour of the solar system with a 3-D option and groovy space music in the background. You can highlight each planet and its moons, drill into its core, read about its stats, check out pictures of the satellites that have orbited it, etc. You can drag the planets around and rotate them, so that you can look at their dark sides, light sides, orbits and relation to the rest of the solar system. Can't recommend this one highly enough! We use it as a post-bedtime story, lights out activity, and as a reward for successfully completing his nighttime routine.
First Words / First Words Christmas
FREE / $1.99 – 4.99
Drag and drop letters into the right position to form words. As soon as the words are in the right order, the picture of the object animates. There's a “lite” version that's free with a variety of words like “cat,” “train” and “cake.” You can also get sets of words with themes like “animals” or “around the house.” Billy liked the free version so much that we bought the deluxe set for $4.99 and then because we're all about Christmas in this house, the Christmas First Words for $1.99.
Ocean Blue
$9.99
A beautiful virtual ocean aquarium but not really worth the $10 price tag – unless you have an autistic child obsessed with fish who finds staring at it soothing. There are two different environments you can choose from for your fish and eight different animals, including a variety of fish, a shark and a sea turtle, that you can add to the environment. I'm a bit concerned at how much time he spends electrocuting the fish. But then again, WHY is electrocution of the fish an option? You can also feed the fish, take pictures of them or flush them. Yay. But it IS beautiful; the graphics are second-to-none.
Snowman 3D
$0.99
Mr. Potato Head in Snowman form. This cool little app lets you roll up three snowballs with your finger, stack them up, then choose from a variety of eyes, noses, hats, mouths, and bits of flair to add to your virtual Frosty. You can make a snowman that looks like a pirate or one that looks like a clown – or Billy's favorite, the pirate clown. This is a fun way to discuss body parts. And pirates.
Virtuoso
FREE
This is the kind of app that just blows my feeble mind. How does the same screen become a field of snow you can roll into snowballs in one application and in the next, it's a dueling piano? So so cool. I taught Billy to play “Twinkle, Twinkle Little Star” on this piano, which keeps him busy long enough for us to manage to eat a meal in a restaurant. You can apparently upgrade to a “pro” version of this piano for $0.99 but I don't know how much more you'd want out of an iPad piano or how many pros are going to be bringing this along to gigs, but if you've upgraded, let us know if it's worth the 99 cents.
This is what I discovered in Willow's play kitchen after giving her (oh, the thrills!) a REAL pan from the cabinet with which to play house:
A pony in every pot?
I'm not sure if this indicates an imaginative brain or a sociopathic one. So in honor of Wordless Wednesday, give me your words: What's going on here?
Tastes like chicken!
Unicorn Stew
This is one of my favorite dishes although I have hard time finding a place that makes traditional Unicorn Stew like my Grandma did. The key is cooking the hind quarters first and adding a dash of fairy dust at the very end. As a serving suggestion, try it poured over susquatch corn bread with a side of loch ness monster liver pate. My mouth is watering already.
Not a caption, but related: my mother loves regaling boyfriends with stories of how at the age of 3, I stuffed the family poodle in the Playskool kitchenette oven. And how I failed to remove the shelf within the oven, which would have provided more comfort for said pooch.
At least Willow had enough sense to cook with inanimate animals.
Bob and the Unicorn
Is that the chick from Bob the Builder in that pot with the unicorn? I'm not sure what's happening, but I think that would be an excellent Bob episode. Would beat the crap out of what passes for a plot in Bob the Builder episodes.
Leftovers!
That looks like Sunday night dinner at my house!
People people people...everyone knows that is NOT a unicorn but Star Catcher. And everyone knows that Star Catcher is delicious when lightly pan fried.
Our new band name
Dave and I are putting a band together again with some other friends, and we've been thinking about band names. I think both Unicorn Stew and Pan-Fried Star Catcher sound like viable options.
@Mary: LOVE the story of little you "cooking" the family poodle! Our long-suffering kitty cat (god rest her soul) endured many an imaginative role before she went on to the Playskool kitchen in the sky :-)
Total 7 comments
I think Billy got his first love-note yesterday. I was unpacking his backpack and found a folded up piece of notebook paper. Unfolded, it read “TO BIRLYI” in pencil, followed by a heart and a whole bunch of Dora stickers.
Hands off, girls!
I had had one of those “dark nights of the soul” the night before, tossing and turning and waking up at 3 a.m. with the thought, He may never go on a date. He may never go to prom. He may never find someone who will love him and marry him and have a family with him...
And then literally the following morning, I found the love note. It was like a sign. I brought it up to Dave and he (who walks Billy to school every morning) said, “Could be any one of them. He's a rock star in that class. As soon as he walks in the door, they're all, 'Billy! Billy! Billy's here!'”
Billy, of course, is oblivious to his fans, more concerned about getting a clear path to the water fountain and spending some quality time with the dry-erase board and markers – his morning routine. (We had an unfortunate incident one morning when another child decided to park himself in front of the water fountain, which led to a discussion of polite ways to ask someone to move.)
Then I realized that most of Billy's autism challenges would in no way limit his ability to get girls in high school: He has no desire to please people. He makes limited eye contact in social situations. He can't sit still in class and misbehaves. He gets surly if you try to talk to him about anything serious. Come to think of it, most of my high school crushes could have been autistic and I probably wouldn't have noticed.
True, Billy talks non-stop about whatever interests him, regardless of whether you care in the slightest. But if he gets fixated on the guitar or sports or motorcycles (god forbid), then he'll pretty much be crack for high school girls.
I tracked down some of my latest fears to the fact that Billy's been fixating on the Dr. Seuss book Oh the Places You Will Go again. Specifically, he's been echo-ing the line, “Alone, I'm afraid, is something you'll be quite a lot.” He doesn't seem all that bothered by the line. He just brings it up again and again, like he's thinking about it. Sometimes he does that when he's trying to work something out.
It breaks my heart. I immediately grab him up and say, “You'll never be alone. Mama will always always always be with you.” Then he inevitably gives me this startled look like, “Oh, great. Yeah, THAT sounds like fun.”
He's got a lot going for him. He's absolutely gorgeous with beautiful big blue eyes that literally stop people in the streets. He's funny and loves to make people laugh and to laugh himself. He's talented musically and very smart.
And then I realize that of course he can find someone to love who will love him back. Of course, there will be someone out there that realizes how special he is, someone who's willing to help fill in the gaps where he has difficulties and appreciate all the amazing unique gifts he has. After all, isn't that what we all hope that real love will turn out to be?
Apparently, there's one little girl in pre-K who already recognizes quality when she sees it. The little hussy ...
Lil Playa
What a little playa! Your description of all your high school crushes possibly being on the spectrum is a dead on description of evey popular guy in my high school. I think your little rock star will do better with the young ladies in high school than I ever did.
With those gorgeous eyes, I can't see any reason why the girls wouldn't swoon! Thanks so much for visiting during my SITS Day!
What a Cutie!
With looks like that, I don't think getting girls will be a problem! LOL
He's Beautiful!
"It breaks my heart. I immediately grab him up and say, “You'll never be alone. Mama will always always always be with you.” Then he inevitably gives me this startled look like, “Oh, great. Yeah, THAT sounds like fun.”" Every kid on earth would probably react like that! I know I'd get some serious eye-rolling from my kids if I ever said that to them!
I'm glad Billy is well-loved at day care! I'm sure they learn as much from him as he does from them!
Wendy
The Mother/Son Bond
I love this, Amanda! They are such honest feelings .... feeling that we all have. We all cross our fingers and dream that our kids will find someone who appreciates their good (and bad) qualities. I have a boy & a girl too — but there is something about the mothern/son bond— they love their mama (you know, like Adam Sandler in the Waterboy) and it's hard to think of being #2. He is just a DOLL, Amanda!! I mean, seriously!!! (your post is up on SoMo today btw!) Thanks for that!
Steph
I can so relate to you. Thanks for sharing, I needed that.
What the future holds
"letting tomorrow take care of itself" is a life lesson with which I'm clearly still struggling. Particularly in the middle of the night. I want to be prepared, but I'm learning that there is only so much for which you can prepare. You can't organize enough or prepare enough or worry enough to protect your child from heartbreak. We can only help them become resilient enough to survive and thrive no matter what life throws at them :-)
life is uncertain
I haven't had the specific challenge of autism to deal with but we've had some kids with learning disabilities. I've had some of the same thoughts and I still worry about how they will turn out and what they'll do in life. I also have those thoughts about my other kids, so I suppose that's just the way it is. As the mom of 5 boys, I can tell you that all little girls are hussies!
Oh, he looks so like you! Maybe Billy and Audrey can make one of those "if neither of us is married by 30..." pacts, or we could make it for them.
Arranged marriage
I love it! I'll draw up the contract. We don't have any camels, goats or chickens to seal the marriage bargain, but we have lots of squirrels and a non-working Toyota Celica in our yard.
He's blessed
The unconditional love of his parents will carry him through everything. That touches me more than anything. Billy is truly blessed. And a very beautiful little boy! Being the mother of two sons, I can so relate to your "little hussy" comment! :-)
Sunshine xx
I just found your blog and came across this post of yours. My son is also on the spectrum and I've thought these same thoughts myself. Yet, I know these children will find love. They radiate something amazing and what is wonderful is that you see it already...that little girl is just the first of many who will want to scoop your lil man up! He is a doll, btw =)
Lovin the little man
Billy has started singing that song "When Somebody Loved Me" from Toy Story 2. It's a song sung by a DOLL who's remembering when she was owned and loved by a little girl, before that little girl grew up and gave her away. But honestly, it chokes me up every time he sings it! I really need to get a grip ... :-)
I stumbled across you're blog the other day and I just wanted to reassure all of the parents who are concerned about romantic prospects of their kids with autism. While only of my old boyfriends was offically on the specturm niether my husband nor any of my previous romantic relationships have been neurotypical. Plus, through the blogosphere, I've met tons of adult auties and aspies in long term relationships.
roclafamilia
Helpful blog, bookmarked the website with hopes to read more!
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This year marks the 50th anniversary of the Dr. Seuss book, Green Eggs and Ham. One of Billy's favorite apps on the iPad, the interactive book has been played in our house more than 50 times in the last 48 hours, and it's starting to get to me. I think it's a great book, but I'm starting to dream in Dr. Seuss-speak.
(Random House)
After a couple dozen times, it slowly started to dawn on me that Sam-I-Am reminded me of someone. I woke in the middle of one night to the sound of Billy reciting “Could you?! Would you?! On a BOAT!!” and realized why he loves this book so much: Sam is autistic. Consider...
1. Sam-I-Am has a strange diet. So does Billy. Billy recently brought home a class project called “My Favorite Food.” There were black dots all over a white sheet of paper. I asked him, “What is this?” Billy: “Raisins.” He does love the heck out of some raisins. And ice cream. And that's about it.
2. Sam-I-Am is totally obsessive about a very specific thing and oblivious to whether anyone else cares. So is Billy. Granted, the subject of Billy's obsession can change (thank God) from month to month, but perennial favorites are the planet Saturn, Charlie Brown and fish.
3. Sam-I-Am has a unique style of speaking. So does Billy. Billy can have an entire conversation with you using lines from Finding Nemo and Alvin and the Chipmunks, and Dave and I are the only ones who can interpret. “Alvin, you were a bit flat!” means he's irritated. And “First day of school!” means he's excited, even if you're in the grocery store and he's just spotted some raisins.
Billy memorizes anything easily, of course, but sometimes he doesn't hear it correctly, particularly if the characters don't speak clearly. Instead of “Hark, the Herald Angels Sing” which he heard on A Charlie Brown Christmas, Billy sings a beautiful note-perfect version of “Mark, the Feral Danger King,” a far more interesting-sounding character, in my opinion, than Charlie Brown.
4. Sam-I-Am doesn't understand personal space. Neither does Billy. Billy's style of making friends involves getting right up in someone's face and shouting something about Alvin and the Chipmunks before enveloping them in a bear hug and wrestling them to the floor. Boys, girls, the exterminator – everyone gets the same treatment.
(Random House)
5. Sam-I-Am seems completely un-fazed by the potential for physical danger inherent in driving a car off a cliff on to a boat while carrying a platter of ham and eggs. Billy would be right there in that car, nestled between the fox and the goat, given the opportunity.
When Willow was about 8 months old, I found him at the top of our stairs, squeezed into her baby walker, ready to push off. I asked him what in the Hades he thought he was doing and he responded, “Roller coaster!”
Happy birthday, Green Eggs and Ham! And thank you for showing us that, in the end, a singularly obsessive person can make friends, live a rich, colorful full life with some unusual pets, drive a car, and expose the world to new ideas – like coloring eggs green – that we might not have considered.
I love your analysis of Sam-I-Am and how he definitely seems autistic!
My son (Damien) is currently going through speech & communication therapy and has a full scale autism test in November, right before his 3rd birthday. With Damien, even his teachers are puzzled. Some little behaviors he exhibits raise some obvious red flags for them but on the other end of the spectrum he's off-the-charts good at certain quirky unusual skills which typical autistic children are not.
Sometimes I feel that he might be slightly, other times not. Either way this experience has really opened my eyes to autism and other disorders similar to it. And more than ever I have to give a round of applause to the parents of those with children on those many different levels. Kudos for handling it as well as possible day by day!
~Brianna, "Silly Mommy"
Great Comparison!
I never thought of that before, but you may be onto something. Amelia Bedelia, on the other hand, is clearly an Aspie.
Characters on the spectrum :-)
Brianna: Thanks so much for getting in touch! I look forward to checking out your site ... every time I meet another family who loves someone who occupies some unique point on the spectrum, I'm always fascinated to see how different they are. It just re-confirms the idea that our kids need to be educated in an equally unique way, rather than trying to make them fit any mold. Of course, I think EVERY child could benefit from an Individualized Education Plan -- too bad that public schools can afford to treat each child as an individual. I wish you the very best on the journey to diagnosis, and would only offer this bit of advice: No doctor or therapist or teacher will ever know your child better than you do. They can, however, help you get the support you need. If there's ever anything I can do to help, please feel free to email me.
Cheryl: And Pippi Longstocking! In fact, I think if you surveyed the most interesting children's characters, quite a large proportion of the best ones would be one of our lovable spectrum-dwellers :-)
Mark the Feral Danger King....HA! Love it. We have a love-hate relationship with this book. For what seemed like years, Audrey scripted the phrase "green eggs and ham" about a thousand times a day, most when she was irritated. Sorta soured the book for me.
Mark the Feral Danger King
I like Billy's rendition of Hark the Herald Angels Sing. I'd like to hear how he interprets that Manfred Mann/Bruce Springsteen classic, "Blinded by the light, wrapped up like a duece, another runner in the night," because what the devil does that mean? Perhaps Billy can make some sense of it for me.
Nice hooking up!
Nice hooking up on SITS! I love the quirkiness of Dr. Seuss, and what a great way to explain ASD behaviors! We sure need a sense of humor with our kiddos! ;)
Chris
I hear you!
Hi Amanda!
As a Mama of a kidlet on the Spectrum, I hear you!! I so enjoyed your comparison and agree with your conclusion that there really are so many options and possibilities for the singularly obsessive (it just takes some digging, patience, & perseverance to find them & help them find the route that will work for them)!
I know that hearing something not quite the way it was really said bit quite well! We introduced a teacher once, called her Miss Denise, only he heard, Mrs. Neice and it stuck for the rest of the summer. And I agree, Mark the Feral Danger King does sound much more interesting!
As a toddler, when my kidlet would wake early, there were no calls to get up, but I could hear Dr. Seuss books being recited aloud from memory and in their entirety. I thought it was so cute & showed a love for books, but now I know differently. :>
Thanks for stopping by today! I'm so glad to have connected with another Mama with many of the same challenges! :>
Karen
Twitter: @timecrafted
PS I saw Angle's air quoting autism.....talk about making my blood boil!!
Ah, good ol' Dr. Seuss..
He was almost certainly autistic himself. :)
Wow! I never thought of it that way! :-) I guess he did have some strong tendencies, huh?! lol
Speaking of those with tendencies, I'm sure that Brick from "The Middle" is on the spectrum somewhere. Have you seen that show? It comes on ABC on Wednesday nights.
Found you from the blog frog SITS community. Glad I found you. Have a great day!
Wow!
You are sooo right! Both my boys are on the severe end of the autism spectrum and both love Dr. Seuss books with their back and forth flow of reading.
I love this & had to laugh all the way through. The single mindedness, the tenacity and determination, the repetitiveness of speech, the lack of awareness for other's oppinions... all of those things and more are rampant in my home! :P
We have been trying to determine the exact diagnosis for my kids, but it seems there may well be no specific target to aim at. I'm afraid we'll forever be treating ever changing symptoms with various therapies and meds. I hate that part, but with no meds, the amount of difficulty for everyone is 1000 fold. Oh wait, maybe I'm the guy who doesn't want to try the green eggs and ham, then "MMmmmm, Saaayy. I do like green eggs and ham!."
Dr. Seuss
@Lynn: Yeah, I'm a bit soured on the whole book right about now as well. There's nothing like repetitive 4 a.m. recitations to kinda take the shine off the penny.
@Maura: You should hear his other Xmas carols, like "Violent Kite." I definitely have to get him listening to some Springsteen. I wonder if I could convince Springsteen to do a cartoon. #awesomecartoonidea
@Chris: Thanks for stopping by!
@Karen: So funny about Ms Niece. Billy got confused his first week of school by the fact that everyone was talking about the school mascot, the Bobcat. They're the Buck Lake Bobcats and there was lots of discussion of "I'm a Buck Lake Bobcat!" etc. His grandmother then asked Billy, "What's your teacher's name, Billy?" And he replied, 'Bobcat!" We FINALLY worked that one out :-)
@outoutout: I'm sure you're right. It takes a special kind of mind to imagine a Fiffer-Feffer-Feff and a Zizzer-zazzer-zuzz!
@Tonya: I've only watched The Middle once -- I'm going to have to check it out again! (I never manage to watch anything until about a week after it airs; thank god for DVR :-)
@Sunday: Billy is now a total Dr. Seuss devotee. He loves his new interactive Cat in the Hat book too!
@Melody: Diagnosis is definitely a constantly moving target. It helps with some things -- like school services and insurance coverage. But no diagnosis will ever explain the uniqueness of our children, their challenges, or their changes. We have to watch them like hawks and be ready for the next development, whatever it may bring. I wish you all the very best. Please let me know if there's ever anything I can help with.
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"Take off the mandates for coverage in the state of Nevada and all over the United States," [Nevada Republican Senate candidate Sharron] Angle says in a video from a speech she gave in 2009 at a Tea Party rally in Winnemucca. "You know what I'm talking about. You're paying for things that you don't even need. They just passed the latest one," Angle continues, then makes a reference to autism, using her fingers to make quotes around the term that describes a range of developmental disorders. "Everything they want to throw at us is covered under 'autism' so that's a mandate that you have to pay for...” --Las Vegas Review-Journal, Sept. 24, 2010
Apparently, Sharron Angle doesn't believe in autism. Or maybe she's like that character Joey from Friends and doesn't actually know what air quotes mean.
Either way, I don't understand her point: That autism doesn't affect enough children for it to be worth the cost increase in premiums that cover it? Well, I'm sure that premiums would be much lower if they excluded all diseases, disabilities and illnesses. Pure profit. Cover nothing; just charge premiums.
I think that some people in the country are under the impression that the second mandates when into effect – and Florida passed one of these laws – people were just beating down the door to get an autism diagnosis and jump on board for some fun, free speech, occupational and behavioral therapy. There's no better way to spend your day than sitting around the lobby of the speech and hearing clinic. I can't get enough of that place and its turtle tank.
Florida's law is a good piece of legislation that helps a lot of people. But not us. We're one of those families that slipped through the (rather large) gap in the law. My husband works at a company with fewer than 50 employees, so despite the fact that as a smaller group we pay higher premiums and higher deductibles, autism is not covered. (For some reason, our deductible went up $1,000 this past year, though.) We can, luckily, get some speech and occupational therapy by using a medical diagnosis code of “static encepholopathy,” provided by our neurologist.
As I mentioned last week, we looked into the option of switching to Florida KidCare. It's not one but actually several different programs. During the first call, a customer service rep told my mother that yes, all autism therapy was covered by KidCare.
On further investigation, though, we discovered that's not true. The good news: If your income qualifies you for a subsidized premium (about $20-30 a month) through Children's Medical Services, everything is covered – speech, OT, ABA therapy. If you think you would qualify and would like my contact at CMS, please email me privately at AmandaBroadfoot@gmail.com. She says that she can get you enrolled in 24 hours. (I don't want to post her email here, because I don't want her inundated by Robocommenter with ads for buying cialis online.)
The bad news: If your income doesn't qualify, you cannot buy into this program. You can't even pay an unsubsidized premium.
The good news: There is a KidCare plan that anyone can buy into and the premiums are reasonable (about $159/month) – Florida Healthy Kids.
The bad news: ABA therapy is not covered under this plan.
The good news: You can apply for a Medicaid DD waiver to help with costs of medically necessary therapy not covered.
The bad news: There is a three-year waiting list and it's getting longer every day. You can apply to be bumped to the top of the list, but I was told by my contact at CMS who was kindly lowering my expectations, “They're dealing every day with homeless children and those in life-threatening situations.”
Wow. It had never really dawned on me that there are homeless disabled children out there on the streets, but of course there are. Of course there are. There are homeless autistic children. There are autistic kids in the foster care system. There are autistic children battling other diseases as well. There are autistic children whose parents can't or won't advocate them for any number of reasons.
I still haven't found out how to get coverage for ABA therapy, but we're exploring some options. I have, however, had my eyes opened...
While I was wallowing in my hate hole last week, there were parents out there hoping and praying to God that one day they would end up as lucky as me -- living with a roof over their heads with plenty of time and money and food for their kids and the opportunity to give them the best kind of therapy available anywhere: the loving support of a happy home.
So I'm out of the hate hole – though I am sparing a little bit of intense dislike for Sharron Angle and her air quotes around “autistic.” If she doesn't believe in autism, I'd love to put her in a room with Billy and challenge her to get a word in edgewise during one of his recitations of Alvin and the Chipmunks.
But when I was ranting on Facebook about Angle and her wingnut disbelief in autism, my friend Brian responded succinctly, “That's OK. I don't believe in Sharron Angle.” Tru dat.
i don't believe in her either!
i wish i lived in NV so i could not vote for this idiot.
Excellent Post--Again!
Where I live, you can get ABA provided for free through the Country Regional Center. It takes forever to go through their process, and it CAN be difficult to get accepted (they won't take kids with Asperger's or PDD-NOS diagnoses). It took us almost a year to get accepted in. But we chose an agency we love that is 100 percent funded through them. That's the good news. The bad news is because of limited budget resources, they only provided ABA for 2-3 years at most (but that's huge). We're getting kick out of ABA after only a year, but they claim our daughter is really done with it an can't benefit from it any more. After reading what you posted, I feel blessed to have even have gotten the year!
Prestigious Award
Amanda, I bestowed upon you an extremely prestigious blogging award. When you get a chance, check it out at my blog. Unfortunately, there is no cash prize that accompanies this honor.
Oh, The Irony and Why I Won't Be Ranting Today
The autism mandate does not help us either. I work for FSU, but as a self-insured employer, FSU is also exempt from the autism mandate. Oh, the irony!! FSU has an growing Autism Institute, but it will not cover speech and language therapy for the autistic children of its own employees through its own speech clinic!
It is not all bad news. As an FSU employee, I do receive a discounted rate for speech therapy and the remainder that is paid out of pocket can be deducted from my Medical Reimbursement Account. Which means it is from pre-tax dollars. Which means I am getting a break from the federal government. You see where I am going with this...
I have to stop now. Every time I try to finish this post, I begin to devolve into a rant most unbecoming of your blog :). And life is too short for ranting. Better to spend my time researching Florida's political candidates and getting my vote out for November 2.
I never get emotional over ANYTHING on the Internet. Never.
But when you talked about homeless and other unfortunate children with autism and other diseases, I got a lump in my throat and a little misty-eyed. How difficult it must be for them not receiving therapy and way to possibly make their days less frustrating, in addition to not understanding WHY they can't express themselves. And for those with severe autism, possibly being abused by parents or caretakers not having the patience and education to know why their child acts the way they do.
It breaks my heart to know that children are subject to either scenario, and so many more. It's so hard to want to love all of them yet feel so helpless because you can't.
You can only speak out for the disease and those unable to find their voice in hopes it will change what services are available to them. To potentially make their suffering a little less.
Sharron Angle can kiss my fat ass
Did you put yourself on the waiting list for the waiver? Even though there is a 3 year wait, the waiver takes them until they're 18 or 21 and three years goes by awfully fast. Don't feel guilty like you are taking someone's spot that needs it more...that wouldn't happen. In IL they said that I would never qualify and then out of the blue they did a lottery and I got it. So you never know...
Med. Waiver
Thanks for that kick in the pants, Lynn. I hadn't done it yet -- I've been feeling sort of like a balloon with the air let out since last week. But you're right: the last three years have certainly flown by. And it's not like we're not going to need the money in three years -- as much as I'd like to think our finances are going to skyrocket :-) I'm going to get that process started this week.
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“I love the iPad,” my sister told me after we've spent half and hour playing with our new toy.
World's sorriest game of hangman.
She and her husband had come over for dinner, after which I brought out our new prized possession, the extremely generous gift Dave got from his boss. Mark, Dave's boss, knew we'd been saving to buy an iPad for Billy, after hearing about the miraculous affinity some autistic kids have for the device, and he surprised Dave with one for the recent 5th anniversary of Dave's employment with the company. What a mensch.
Since then, we've downloaded all kinds of apps: games that teach spelling and numbers, automated social stories, interactive Dr. Seuss books. It's incredible the wealth of programs that are out there for such a new device.
Anyway, Sami was staring down at the screen. “This is so much fun! I'm buying one tomorrow!”
“You do realize,” I asked her, “That you don't need an iPad to play Hangman? We could have had this exact same evening in 1980."
Yep, with the wealth of amazing apps literally at our fingertips, we had loaded up the basic DRAW program and commenced a (truly embarrassingly bad) game of Hangman.
Despite our sorry use of this most marvelous machine, Billy took to it like a duck on a junebug. Like a lot of other parents, I've read all the stuff about autistic kids' natural affinity for the iPad. Nonetheless, I tried to reign in my expectations before presenting it to Billy, because the second I try to force him to use something, he gets turned off forever (yes, tricycle, I'm talking to you).
I showed him this game First Words, which allows you to drag and drop letters into position to spell out short words. His fine motor skills are still a little behind the curve, so I wasn't sure if this would be too much for him. I started to show him how to point to a letter, drag it across the screen and --
He shoved my hand out of the way, finished off that word and advanced to the next screen on his own. And that was it: Billy's love of “'Puter,” as he's decided to call it, was sealed.
Favorite appls include Virtuoso, which turns the iPad into a “dueling” piano, AutismXpress, in which animated faces demonstrate emotions from Happy to Gassy, Parents Magazine Flashcards, and the animated Dr. Seuss ABCs.
But by far his favorite app is Solar Walk, which I have to say is pretty friggin' cool. He's known all the planets for a while, but now he also knows the names of various moons, which planets are ice giants, and the names of about half a dozen satellites, which “take pictures of the planets!” he announces. There's a 3D setting and groovy, soothing space music plays while you play with the program, making it the perfect activity after our bedtime story and lights out.
Some of the apps have been a dubious success. There's an app from Kindergarten.com called (I think; it's hard to tell what the actual title is) Receptive by Function. It's designed to encourage development of functional language and the kind of thinking skills used when grouping things into categories.
The program shows pictures of three different things side-by-side. For instance, one set is a raccoon, a set of ping-pong-paddles and a stalk of broccoli. Then it asks you to “Touch the one that you play with.” If you don't touch the right one, it flashes the correct answer until you touch the right one, making it very easy for a child to succeed.
Well, you can probably see where this is going. After a couple of rounds in which he memorized all the right answers, Billy started getting creative with his answers. “Billy plays with the raccoon!” he informed me.
No amount of arguing that that was a very bad idea would convince him that ping-pong was more fun than a raccoon. So we talked a little bit about what we might do if we had a raccoon to play with, and Billy seems to think that the raccoon might quite like to play football. If my child gets mauled in the face one day after trying to get a raccoon to play quarterback, I'm coming for you, Kindergarten.com.
We soon realized that Billy had developed his own game. It's called, “Touch the one that Billy likes the best.” When shown pictures of a chef, a doctor and a clown and asked to “Touch the one that takes care of your body,” Billy goes for the clown every time. It did, once again, spark an interesting conversation about how much more fun it would be to visit a clown than a doctor. “A clown takes care of your body,” Billy insists.
Also, now he goes around the house, pointing to things and saying, “Touch the one that's a table.” And touching the table. “Touch the one that's a fridge.” And touches the fridge. And on and on. Of course, the echolalia danger is there with any talking toy. (Don't get me started on the maniacal laughter he developed after exposure to the hysterically giggling Fischer-Price Workbench.)
Billy finds it difficult, like most autistic kids, to just sit and listen and learn. But he is learning new skills every day and absorbing information like a sponge, thanks to the iPad. Even better, I can bribe him to do anything from eat his dinner, which used to be a drama every single day, to go to bed (ditto), with the promise of 'Puter time. And because the apps are so cool, he's just as happy with an educational game as he is with Angry Birds.
He crawled up in my lap yesterday to play with the new Aquarium app I downloaded. He LOVES fish, and this one teaches the names of fish, how big they are, where they're from. And they swim around like in a real tank. He was completely amazed and looked up at me with a big smile on his face. He pressed his nose against mine and murmured, “Touch the one that's I love you.”
I love you too.
Yay!
I loved this post and I am so glad he his loving the iPad. There is a group called MomsWithApps that promotes educational iPhone, iPad applications and they do free app friday. I've never used them because I don't have anything to use them on, but a really good friend of my sister helped found it. You might find some good stuff through them.
Thanks!
Thanks for the info -- I will definitely check it out :-)
I Want One of Them Thangs!
Forget my daughter...I want one! They seem so cool. How awesome of your husband's boss to spring for one!
Videos
I love the videos! He is so beautiful.
Wonderful!
How wonderful! I can think of three families that will benefit from this news. I'll be sure to pass it along.
The last two lines of this post? Breathtaking. :) Billy is awesome.
iCry
Oh man, teared up at "Touch the one that's I love you" - what an incredible sweetheart.
Love it
Oh I love this post so much!
And now.... I truly am in love with the iPad- regardless of the name. :)
Loved This Post...
Anything that will get kids to do what you want them to do when you want them to do it is great in my book! Glad Billy is liking his new toy!
Wendy
This is beautiful
What a beautiful post, and such a positive and exciting step into technology for Billy and for you all. Without losing the human touch which is so present, especially in the noses! Very special indeed.
Sunshine x
Aquarium
Amanda can you tell me what is the exact name of the Aquarium app you use? I have been searching on our ipad and there are quite a lot!!
Cheers
Thsi is the best use of an iPad I've read to date. You express yourself so well, I'm going to go back read more. I came over here after seeing your shout out on Twitter. The fun world of social media!
Love this post. I'm also recently the owner of an iPad and I must say that little box of tricks is amazing I'll be adding my own list of top 25 apps we're using - that's if I'm able to narrow it down! Really thrilled how this is working out for you guys - iPad naysayers... yah boo sucks! ;-)
I want one!
Sounds awesome! Audrey would go nuts. And when you start that ABA program, this would be called a reinforcer. Ha! We already use the iPhone as one for Audrey.....
LOVE this post!
Total 14 comments
Pass the cookies. I need to hate some more.
I'm fighting a familiar super-villain this week: Hate. And his sidekick: Blinding Rage.
Hate kinda left me alone before I had kids. I disliked or was irritated by certain people – or more specifically, the things certain people said and did and the way those-who-will-remain-nameless block the whole aisle at the grocery store AS THOUGH NO ONE ELSE HAS TO BUY CEREAL!! (deep breath)
I guess I came pretty close after 9/11. Strangers are easier to hate, especially homicidal maniacs who murder thousands of people. But I was too consumed by deep sorrow and fear and confusion to be able to muster up the energy for a whole lot of hating at the time.
Because hating takes a lot of energy. When I really get down to the business of hating, I don't have the energy for anything else. I pretty much have to lie down and just hate full-time. And eat. I can hate and eat at the same time.
“Your policy has no autism benefits.”
This news totally flattened me. I am not someone who is good in a crisis; I get hysterical and completely fall to pieces and Dave is left with the job of putting the pieces back to together AND dealing with the crisis. Only there aren't clear-cut pieces like in a puzzle; supporting me in crisis is more like trying to scoop up a mud puddle with your bare hands. If the mud puddle can yell at you.
As I shared earlier this week, we're trying to get ABA therapy for Billy. While we can get speech and occupational therapy – because those therapists can use a medical code for filing – we are not entitled to behavior therapy, because that's not, they tell us, medical – at least not for members of groups with less than 50 members. If you're a member of a group with 50 or more people, the rules change.
Meanwhile, Billy has lately been showing a high level of anxiety and some aggression at times, which is affecting his ability to eat and sleep and function at school. More speech therapy is not going to help that.
Every medical expert we've seen has agreed that what Billy needs right now, what has the greatest chance of success, is an ABA intervention. And the earlier he gets that therapy, the better he's going to be at handling the inevitable crises and changes that come up in life. Essentially, the more therapy he gets now, the less he'll probably need in the long run.
I'm sorry. I don't feel very funny today. I feel guilty that I didn't somehow plan for this better. I don't know what we could have done, but I guess we should have sat down, before having a child, and gone over every possible outcome: “And if he has a genetic abnormality? Is that covered? What about TB? MS? Parkinson's? Ebola?” And then buy supplemental insurance for every gap in coverage we find.
There is a light at the end of the tunnel: My mom – who, by the way, is awesome in times of crisis, and it's probably her fault that I'm so useless because I'm so used to being so expertly cared for – got on the phone to Florida KidCare. That's the insurance that's available to all kids in Florida, regardless of their families' ability to pay.
They told her that, while we'd have to pay the full premium amount (about $120/month), autism is fully covered: ABA, speech, OT, you name it.
Now my question: Anyone out there have experience with KidCare? Is it difficult to find a provider? Any input would be greatly appreciated before we make a decision about moving Billy's coverage. If this works out, I will be the biggest proponent and advocate for KidCare in the Sunshine State.
Please stop back by tomorrow when I promise I will rise from the couch, dust off the crumbs and try to crawl out of my hate hole.
Been there...
I can't help you with information about Florida KidCare, because we live in Maryland (Baltimore specifically). I do have experience with insurance coverage issues. For me, even speech and OT are only very basically covered - 6 months worth of treatments after the incident, which I guess would be after the DX in terms of autism. Basically no coverage. And I work for a company with way more than 50 employees. Not that this makes your situation any less frustrating, but so that you know your not alone. I remember asking why they would pay for a very expensive diagnosis and then be unwilling to cover the services they recommended? Clearly this was a medical need and the product they sold was called "medical" insurance, so how could they not cover it? I did some serious hating at that point.
Another thing to keep in mind is that the super-intensive super-expensive ABA training that is recommended is out of most peoples' reaches and kids can still have pretty good outcomes regardless (speaking as a mom and not a medical expert). It's something I've written about <a href="http://survivingthesystem.blogspot.com/2009/12/so-this-study-has-put-me-on-defensive.html>here</a>
Sorry You're Going Through This!
I hope the KidCare works out for you! Good luck!
Hang in There
I live in Florida but know nothing about KidCare. The whole insurance thing is horrible. I've almost given up on them convering anything autism related. I wish I had some great advice for you - but I don't. If misery loves company, then I guess I'm keeping you company on this one. Hang in there.
Moms are Great...
I hope the KidCare thing works out...glad your mom found them!
Wendy
Hello, if your still seeking information regarding Florida KidCare please give me a call 1-888-352-5437x0 ask for Consina.
Thanks
Thank you all so much
Well, I'm out of my hate-hole, thankfully :-) And I wanted to say thank-you to all of you who do, indeed, know what it feels like to have your child denied insurance benefits. Whether it's for autism -- or something else unexpected -- it's scary and frustrating.
@aparent: Thank you for sharing your link. While I don't agree completely with your assessment of ABA, your articulate post reminded me that I *am* a firm believer that the best "therapy" in the world is what we, as parents, do all day every day: we love them, we support them, we work with them to the best of our ability. I am a firm believer, too, that relationship-based therapy is the most effective.
I used to think, like you, that all ABA was essentially "dog-training." Then I observed the work that an ABA therapist did with my son at school and realized that these therapists, like all of them, vary greatly from one to the next. Most ABA therapists that I've observed take a very relationship-based approach, realizing that any therapy not firmly grounded in the joy of the child is doomed to failure -- whether that failure is in its performance results or the child's sense of self-worth. I have NO time for anyone trying to break my unique child's spirit in the name of therapy.
We're exploring options and meanwhile, we're still doing what we're doing. I have been too focused on the problems Billy has had lately, forgetting to celebrate new achievements: he's been trying new foods at school, he's made a new "reading buddy" friend from the 4th grade, and he has been working very productively in all his speech therapy sessions with a new therapist. He's even slept through the night for the last four nights!! OK, so he pulled the fire alarm at school yesterday (yipes); some of that is just 4-year-old boy.
Instead of celebrating these achievements, I fell into the trap of mourning all over again. That mourning blindsides me sometimes. I see a neurotypical child do something that Billy "should" be able to do and I cry for a week. Some stimming behavior reasserts itself and I go back down the rabbit hole for a while, convinced that I'm completely ill-equipped to help him, that there has to be some magic bullet out there, that I'm doing everything wrong.
Eventually, I snap out of it. And usually, he's the one that snaps me out of it. It can be as simple as running to me with open arms and a big smile at school pickup (something else new that started this week). Or cuddling up with Willow on the couch and holding her hand. But thank you all for helping see me through this bout of self-indulgent wallowing. I'm back :-)
Clarification
Sorry if I sounded like I thought all ABA programs were too limiting. I only looked at one program on one day. Although the Kennedy Krieger Achievements program is well known I'm sure there are many very different programs plus things have probably changed a lot since my son was pre-school age (he's in 6th grade this year). On that day I wasn’t overly impressed, but it also was tinged with sour grapes since there was no way my son was going to be able to get into the program. Also, my son's needs are not the same as other autistic kids. In the same way that I'd like people to not think they understand my kid because they know one example of a person with autism (usually Dustin Hoffman in Rainman), I don't want to say I know everything about ABA from a 2 hour visit 7 years ago.
Medicaid Home-Based Waiver
Do you guys have the Medicaid Waiver in FLA? I thought that every state had a form of it. Basically they waive the income requirements and your kid is on Medicaid...but there's no premium that you have to pay and you get $ that can be put towards ABA. That is how we pay for our program. We get about $15K/year. Some states are as high as $36K/year. I tried to do a Google search but couldn't find info for FLA.
We are currently in limbo with any kind of therapy for my son.
Our personal insurance doesn't cover it.
The state insurance has deemed that he is not bad enough.
So we are just waiting.
Waiting for him to get a whole lot worse. I do not know if we can handle much more worse as a family.
I do not understand why they do not want to do more preventive so that the child does not get worse.
So frustrating.
Stopping by from SITS.
Total 9 comments
The awesome writer Maura Bowen over at 36x37 nudged me in her recent post, "Tag! You're it."
I was always crap at tag. I spent a lot of recesses reading, examining the contents of my satchel (yes, I had a satchel; I fit right in in middle school), or hiding and waiting for the bell to ring.
I considered constructing an elaborate fantasy, answering these questions as imaginary awesome me might answer them. But there are enough people out there who know that I once thought Versace was a chocolate, am always late or forgetting something and haven't been awake past 10 p.m. in four years. So here goes ...
If you could have any superpower, which one would you have and why?
The ability to stop time. I feel like I'm about 13 to-do items behind at any given moment – and that's on a good day. I'd love to be able to freeze the clock, clean the house, take a long hot bubble bath, read a book, and just stare at my beautiful children before they grow up and climb out of my lap.
This is how I imagine myself lounging around the house. (Photo: InStyle)
Who is your style icon?
HAHAHAHAHA! Oh wait, you're serious. I forgot that you've never seen anything but the pictures of me I care to share with the world. When I'm wearing makeup ...and pants.
I have no style. I would like to, but I'm nearly 40 and let's face it: The only shoes I think about are the ones with Lightning McQueen or My Little Pony embossed on them. I'd love to emulate the classy and stylish Nicole Kidman. But as I am not tall, red-haired, porcelain-skinned or super-skinny, I have to have more attainable goals. Like just trying not to wear pajamas outside the house.
But most days I'd be really lucky to look this put-together.
So anyone who doesn't wear pajama pants to the grocery store is my style icon.
What is your favorite quote?
“The cure for boredom is curiosity. There is no cure for curiosity.” -- Dorothy Parker
What is the best compliment you’ve ever received?
“Your blog helped me get through the month my child was diagnosed with autism.” If there's anything I can help with, any questions I can answer about our experience, I'm happy to. I try to respond to anyone who writes to me, whether it's on a comment on my blog or in a private email to AmandaBroadfoot@gmail.com. Because I feel like I owe the community that much. So many other blogs like Both Hands and a Flashlight, Stuart Duncan, AutismArmyMom, and BigDaddyAutism have helped me get through the rough days and long nights.
What playlist/cd is in your CD player/iPod right now?
The book Freedom by Jonathan Franzen that I downloaded from Audible.com. It's the only way I get to read for entertainment any more – other than blogs, of course. The narrator sounds so smug, though, that I just want to punch him in the mouth.
Are you a night owl or a morning person?
I'm going to have to stop making the same joke, but it's still true: By 10 p.m., I could fall asleep while someone was punching me in the face. We're up a lot in the night with Billy's sleep troubles, though, so I don't know what that makes me. I'm still exhausted at 7 a.m. I guess I'm kind of a noon to 1:30 sort of person (Willow's nap time).
Do you prefer dogs or cats?
Cats, cats, cats. I love other people's dogs, but seriously, the upkeep is just beyond me. You have to wash them and exercise them and take them to the bathroom, and the whole "picking up poop" thing is a deal-breaker. I'm looking forward to the day everyone in my house handles their own pooping.
What is the meaning behind your blog name?
"Life is a spectrum” is the new name of my blog, changed just a couple of weeks ago. It illustrates our philosophy of autism and life: We're all on a spectrum. After all, “normal” is most definitely a spectrum. The longer I live, the further away from the “normal” end of the spectrum I creep ... and the happier I am about that fact.
Enjoyed Learning about You!
I enjoyed reading this and getting to know you a bit better!
Fabulous!
Fabulous, as always! I dig the honesty. I swear, if I didn't come into the office three days a week, I'd be jeans and flip flops and dorky t-shirts every day of the week. Way to represent!
Here's hoping you get some sleep tonight. Waking up multiple times a night is hard on a mama. Hang in there.
This made me laugh!
What a great way to answer all those questions and share more of who you are - thank you!
Sunshine x
I LOVE this!
This was PERFECT from start to finish! Honest! Open! And funny! My favorite kind of q&a! :) I laughed out loud at your style icon and I loved your close! I think I'll creep away from normal with you!
You Carried a Satchel in Middle School?
I don't know if this more sad for you or for me but, we share the exact same style icon. Weird, huh?
You are Mahvelous
I could be your style icon. I have not actually worn pajama bottoms outside of the house. I wear sloppy knit pant things that don't look much better, but since I do not actually wear them to bed they don't qualify as pajamas. And I have mascara on today. Take that, Nicole Kidman!
Favorite quote = amazing
That is all!
It's Good to Have Goals...
Loved this line: "I'm looking forward to the day everyone in my house handles their own pooping."
Sorry to break it to you, Amanda, but I'm at that point (except for our dog), and life still isn't perfect! LOL.
It was fun getting to know you better!
Wendy
Bandit's revenge
Thanks so much for all the love -- I needed it today. In addition to our own personal health care crisis, some jerk is hacking my site with some robo-commenting program that publishes crap comments with long streams of text about Cialis and buying cigarettes online. Needless to say, we will be biting the bullet and installing Captcha forthwith. In the meantime, please ignore all Bandit's wild rantings :-)
Total 9 comments
INT. HOME OFFICE - DAY
Hi, I'm Bandit. Press 1 to automatically deny your own claim. Press 2 if you'd like me to do it for you.
MONTAGE: Dave is on the phone, on hold, for what seems like hours. We can hear the hold music playing on the speaker phone in the background. He leans back in his chair, drums a pen on his desk, eats chips, reads football news online, creates a chain of paperclips, etc.
SPEAKER PHONE: Major Health Insurance Company. How may I help you?
Slams his chair down and picks up the phone.
DAVE: Yes! Finally! I'm calling because we were told that you're denying coverage of our son's ABA therapy.
MAJOR HEALTH INSURANCE COMPANY: Policy number please.
Dave gives her the policy number, the group number, the social security numbers of various members of our family
(Looooooooong pause...)
MHIC: I'm afraid yours is a small group policy, and therefore, you have no coverage for autism therapy.
(Another long pause.)
DAVE: That doesn't make any sense. We pay higher premiums and have a much higher deductible than large groups.
MHIC: Your policy does not include any autism benefits.
DAVE: Ok, Ok. But he's been getting therapy for the past year and Major Health Insurance Company has been covering it.
MHIC: Not for autism.
(Another long pause.)
DAVE: But can you see that our son has been getting speech and occupational therapy?
MHIC: Yes, I see that.
DAVE: And you've been covering it?
MHIC: Yes, we have covered that therapy.
DAVE: Well, he's autistic. That's why he gets the therapy. Why can't he get the ABA therapy his doctor recommends?
(Another long pause.)
MHIC: The code under which speech and occupational services were filed was not autism.
DAVE: It wasn't? Well, what was it? The code?
MHIC: I'm sorry, sir, but I'm not at liberty to disclose that information.
(Long long long pause. We think we can hear the sound of a man putting his head through a wall in the background.)
DAVE: Let me get this straight. Billy can't receive therapy for autism. He can receive – and has received -- therapy if we call it something different which has a different code. But you can't tell us what that code is.
MHIC: I cannot disclose the codes for which services have been filed in the past.
DAVE: Can I guess?
(Semi-long pause.)
MHIC: Sir?
DAVE: Is the code ABC123?
MHIC: No, sir --
DAVE: DEFEXYZ?
MHIC: Sir--
DAVE: That's not it? Am I getting warmer? Is it the number 42? Is it my phone number? Is it the Da Vinci Code?
MHIC: Sir, I'm afraid --
DAVE: WHAT. IS. THE. CODE????
And that's when the hold music starts again ...
My fellow autism mom, Lynn over at AutismArmyMom, wrote a hilarious and excellent post about the recent experiments in using a Robot named Bandit to teach autistic children. I don't even have to make fun of the concept of robot autism therapists, because Lynn has already done it so well and said everything that needs to be said on this subject.
But as I said to her, rather than use robots for autism, maybe they could hire them to answer the phone at Major Health Insurance Company. I could send Bandit off to work each day. In fact, if my robot was earning a paycheck as a customer service representative, maybe I could afford ABA therapy for my son.
A bit of serious advice to anyone dealing with Major Health Insurance Company: Whatever happens, don't let them drive you crazy. Their mental health benefits are terrible.
AGHHHHHHH!
Insurance companies
Correct me if I'm wrong...
...but I think the therapist provides the code in order to charge the insurance company. And I'll bet you if you talked to your therapists, they may not have used the autism-specific codes BECAUSE they knew / found out that MHIC wouldn't cover it, so they used something similar and not autism-related. AND, I bet if you talked to them - they'd give you the code, for future reference and use.
I find that the people directly serving me, working with me, and having a hands-on role in my life are MUCH more receptive and helpful than the anonybots with headphones on the other end of the hold music.
*EDIT* Just looked at other comments, and saw you've already gone this route - good luck!!
Bandit is already there.
The part Mandy didn't mention is the wildly frustrating 20 minutes I spent speaking to Bandit BEFORE I actually got through to a real live person. Bandit wants to know my address, social, policy number, etc etc. Bandit does not understand a British accent, so I have to repeat everything again and again, before eventually resorting to my best Redneck impersonation, which of course works immediately. I am calling from work. All my co-workers now think I'm insane. And when I do finally get handed off to Bandit's living side-kick, I am asked all the same questions again. Unbelievable....
MHIC
Thanks very much for the suggestion, Mary! You are absolutely right; the people who know us and our son are MUCH more likely to want to help, and actually, the new ABA therapists have been bending over backwards trying to help us.
We tried actually going to his old speech and occupational therapy clinic -- we've recently changed locations. But we got put on hold/transferred so many times, that we went to the neurologist and bingo! We got the code. Or a code. We'll see if it's the magic Da Vinci code on Monday. If not, we're gonna go back to the speech/OT clinic.
The fight rages on ...
Really???
Stopping by from SITS and I love your blog.
In a former life I handled insurance billing. Your insurance company cannot refuse to tell you that information or even supply you with a copy of the claim if you request it. Next time that happens, tell them it is a federal offense to withhold your PHI (personal health information). The Office for Civil Rights is responsible for HIPAA and this falls under it.
Insurance companies
Bandit must not be used for evil purposes...Bandit will rise up and revolt! I was going to say what Cheryl said...you have to be careful not to draw attention to the coverage that you ARE getting because you are getting it most likely under an apraxia or global delay diagnosis code. If they smell the old 299.0 you might not get anything. Luckily, the mental health and medical sides of these MHIC's don't usually talk to each other. Here's the ultimate irony: you are only supposed to get speech and OT covered if the condition is rehabilitatable (totally not a word) and not if it's chronic like autism. That's right: Short-term condition = all the coverage you want, long-term condition = goose egg. Makes sense, right? I need to fetch my sniper rifle again...
I *am* the Bandit!
Thank you, citymouse, for the heads up on the law! That is very good to know if our magic code doesn't work tomorrow. And I'm so glad you found me through SITS! I made so many great contacts this past week; now I'll NEVER get anything done, because I have so many great blogs to read :-)
Lynn: I'm going to tread lightly here, because I know you're right -- we could end up with the big fat Zippo. Dave and I both have a terrible inability to keep our mouths shut when faced with illogic. And the whole short-term/long-term condition weirdness is as stupid as the logic behind giving less coverage to those of us paying more or not giving us a code that our therapist gave them to get them to cover ... ARGHHGHGH!!! (BANDIT MAD!!!)
I just wish this country could pull its collective head out and decide that children and old people should get anything they need to get better. That's about as political as I get, but I'm pretty adamant about it. There shouldn't be any kids with autism unable to get therapy, and there shouldn't be any old people watering down their milk so that they can buy prescriptions. Dear lord, how did I make a detour on to this rant? I'll meet you in the bell tower.
Ugh
Had the same exact problem years ago. I think I reacted almost the same way your husband did. I was able to figure out the "right" diagnostic code by asking the therapist who had previously been successful in getting our claims paid. It is worse than an episode of the Twilight Zone dealing with these institutions.
Health Insurance can SUCKIT!
I cannot begin to explain how much I hate health insurance.
For YEARS geneticists have wanted to test my 2 boys for various genetic disorders they believe may have played a role in their diagnoses of autism. Fragile X, to name 1. That little test costs $1200! However, our health insurance refuses to pay for it because they say the test itself is only good for information and cannot actually change anything or provide any benefit to the boys health.
I believe I may have reached through the phone and throttled that customer service rep. that day.
Total 10 comments
Today the SITS Girls Back2Blogging Challenge has asked us to write about why we write, to blog about why we blog, to discuss what blogging means to us.
Last night, I started making a list, and it goes a little like this:
1. I get by with a little help from my tweeps.
Blogging has been a means of giving and receiving support, exchanging information, laughing with friends. Let's face it: I don't get out much.
Some people who I know in the “real” world tease me about my obsessive social networking, the way you would tease someone with an obsession with shoes or Halo or somebody who collected potato chips that look like the Virgin Mary. But I have very good friends online. They buck me up, make me laugh and actually help me solve problems. Never underestimate the power of a virtual hug. (I also have two Facebook friends who I'm convinced think I'm somebody else, but most of them know me.)
Sometimes, things just seem less scary when you can get them down in print and contain the whole event or issue or problem in a few paragraphs. You can stare at the whole thing all at once.
And then sometimes, as a mom, you're bursting with pride and want to share your joy with the whole wide world ... web. Thanks to blogging, I can brag to millions of complete strangers ... or at least the 12 people who are actually reading my blog.
Some people don't even realize they're lending support; I'm just lurking around, laughing at their jokes from the sidelines and admiring the pictures of their kids. Now that I think about it, that actually sounds super-creepy.
Just a few of the online friends who get me through the week: Maura at 36x37, Lynn at AutismArmyMom, @NotSoSilentMike, BigDaddyAutism, @SherriPizza and Stuart at AutismFather.
2. 1 Degree of Separation
Theoretically, everyone on the planet is only separated by six other people: You know somebody who knows somebody who knows somebody who knows somebody who knows somebody who knows somebody who can get a meeting with the President, for instance.
The Internet cuts that way down. You can email just about anybody. When we started this blog – and I say “we” because originally, Dave and I were both going to be blogging – we were interested in being able to start discussions about autism treatments and invite scientific debate. We wanted to talk to leaders in research and autism science and get their feedback on treatments and theories on causes.
We do some of that. But since Dave really hasn't had much time to blog about actual science, that part of the blog has been limited to my opinions of therapies like Floortime, Therapeutic Listening and Kindermusic; the great response from Science-based Parenting about how Vaccines Are Not Linked to Aborted Fetal Tissue; more and more about vaccines and rants against celebrities like this one and this one who shouldn't comment on science and a lot of conversation about what happens when I try to cook.
But a new goal that we're setting is devoting at least one post a month to new scientific research and discussion of it.
3. I'm lazy.
Rather than solve problems myself, I can read and learn from other people's solutions. When were playing the Pajama Game night after night with Billy, thankfully, I read about a similar problem my friends at Both Hands and a Flashlight had solved. And then, a commenter left a link to inescapable pajamas. If I hadn't had my tweeps, I'd still be up to my elbows in ... well, you get the idea.
I've benefited from input around the globe on issues from ABA therapy to zip-up pajamas and everything in between.
4. I always listen to Spock and JFK.
One of my first assignments after I moved to Los Angeles, as an editor/journalist at Sci-Fi Universe Magazine (still perhaps the best job I have ever had, barring motherhood), was to interview Leonard Nimoy. I was actually late to the interview, because I got lost, I was flustered and hot and nervous and star-struck, and he was just about the nicest man on the planet.
In order to calm me down, he started talking to me about why I had moved so far from home, what I wanted to do. Embarrassed, I confessed that I was yet another hopeful writer in a city where even hobos are writing screenplays.
Rather than laughing or even offering some meaningless trite comment, he got thoughtful. He said that when he was a young actor, still driving cabs because his career hadn't yet taken off, he picked up a young senator named John F. Kennedy from a Beverly Hills Hotel. When he told the future president that he was an aspiring actor -- probably feeling a lot of the same embarrassment that I felt about calling myself a writer -- JFK responded, “There's always room for one more good one.”
There you have it. Those are now my words to all of you: my tweeps, fellow bloggers, friends and writers in the “real” and virtual world. There's always room for one more good one. If you concentrate on being a "good one," then it doesn't matter what the odds are; you've already beat them.
I don't mean that in the sense that the world is just waiting for me to arrive and that I'm gonna shake it up JFK and Spock-style. But as many voices in the blogosphere as there are, there are never too many good writers.
There's always room for one more good one. Now go get 'em.
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I have had a blast during the Back2 Blogging Challenge this week. Big thanks to SITS Girls, Standards of Excellence, Westar Kitchen and Bath, and Florida Builder Appliances for sponsoring this opportunity. Whether I win Thelma and Louise or not, I feel like I've already won.
So Informative!
Thursday September 30 2010 04:27:03 pm
Cheryl D.
I don't have an Ipad, but if I ever get one, I know who to turn to for advice!
Friday October 01 2010 11:53:34 am
Lynn
That's great info. For those of us losers who just have the iPhone, some of these apps are available for it as well. I know that Solar Walk is, but maybe the graphics are less impressive on the iPhone. I like the sound of the potty one...I wish there was just a generic one (maybe there is) that tracked how many times some customizable behavior is performed before they earn a reinforcer....like staying in her own damn bed at night.
iReward!
Friday October 01 2010 12:14:15 pm
Amanda Broadfoot
Have you tried iReward? It's available for iPhone and iPad, costs $2.99 and let's you set up a reward system where you can track the number of times they perform a particular behavior before they get a reward. I haven't used it a lot, but setting up the first one was really easy. You can have pictures of rewards that they can choose from and you can set the number of times they have to successfully complete the behavior or activity before being rewarded.
Look into my eyes
Friday October 01 2010 01:22:24 pm
Mary M.
The number flashes like in the iris of the child's eye, or in the space between the eyes? The concept admittedly is a little "off" to me - but I can't think of a better alternative! Definitely interested to hear if you see progress down the road. Caring for an autistic child, and making eye contact has been something we've been encouraging and reinforcing, but seeing little progress.
Eye contact
Friday October 01 2010 01:39:42 pm
Amanda Broadfoot
Sorry, yeah, I didn't make that very clear: The number shows up in the iris of each eye. So if he's staring at a close-up picture of a smiling child, he'll see two #7s, one in each eye.
I agree with you, though, it does seem a little odd. I read the extended description of the app, and they are careful not to make ANY claims that it is proven to increase eye contact -- only that it "could." A lot of things COULD, I suppose: staring at mug shots, looking at yourself in the mirror, wearing Groucho Marx glasses/nose ... actually, if those last two worked, Billy would be aces at eye contact by now. But I'm going to keep an "eye" on it, so I'll let you know if we see any progress.
Speaking of mirrors, though, have any of you out there experienced a greater increase in eye contact if you and your child are both looking into the same mirror. I would swear -- well, maybe not under oath but I have a strong inkling -- that Billy is better at eye contact when he's looking at my eyes in a mirror, rather than in the real world. I don't know what, if anything, that means ...
Dr. Seuss
Friday October 01 2010 05:51:18 pm
Maura
There's a Dr. Seuss app? I wonder if they make one for iPhone.
These are all great tips. Solar Walk and Virtuoso sound right up Henry's alley. I'm glad to hear Billy continues to get so much out of this too. I told a friend that you've been having great success with your iPad, and she's thinking about buying one for her boy, Ben. Good info, as always, Amanda!
Apps for Autism
Tuesday October 05 2010 01:00:34 pm
Jenny Orchard
Thanks for sharing these apps! My 2 older boys are in an autistic support program at school and their teacher got a grant to get an iPad and some iTouches to work with the kids. If I hear about any interesting apps when they start using them, I will let you know. They are going to work on using them for schedules and things in the beginning but she is still in the planning stages. Very exciting that there is such great technology out there for our kids!
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