LIFE IS A SPECTRUM
If anyone had told me this moment would be possible even a year ago, I wouldn't have believed it. But autism or no autism, we have no idea what is possible ... Life is a spectrum, yes, but it is so much more. It has dimensions we can't see and takes us on a journey that has as many ups and downs as it has steps forward. Ask a parent to describe a moment so joyful that she can't swallow the tears fast enough, and we realize how inadequate words are to describe life. Luckily, we have more than words. We have iPhones. And we have music ...
Welcome to my first Vlog! A big thank you to Laurie Wallin, mom of four, including two with special needs, for inspiring me with her wonderful Vlog entry about living with our fear and being OK with it. I highly recommend Laurie's website and her honest, inspiring videos. Looking forward to feedback ...
LOVE IT!
The vlog is great Amanda! (Aw, c'mon....do it sans makeup next time...lol. ;-) Seriously, now I'm inspired to try one sometime! Ooooo....I'm so scared though!
V Log
Good job. I couldn't place your accent until you mentioned a little town in (I assume) Northern Florida. I hope, for you, this is a first step in overcoming fear. Follow you son's example. Just to show you how nuts (and selfish) I am, I actually became almost fearless when my son was born and wasn't developing normally. It was almost as though I had a death wish. I did insane stuff with the thought that death would be a sweet release from my life. I came really really close to fulfilling my death wish several times until about 3 years I realized how selfish it would be for me to leave my wife and kids. They need me - not just for financial reasons. Now I try to take care of myself. I don't really fear anything (except the thought of being trapped in a room with a TV that plays only the Lifetime Movie Network for women 24/7). I liked the V-Log. Hope to see more.
Congrats on your first vlog!
You handled that fear of vlogging very gracefully! I love how Billy is your inspiration to become less fearful.
And do I understand that this will be a weekly feature? Awesome!
Good for you!!
Congrats on your first SUCCESSFUL v-log!! I have to admit that I didn't know what a v-log even was (much less how to spell it, so no help there.) I was pretty sure it wasn't anything involving a speculum, but had to check out just to be sure... LOL!
Yes, I do agree that our children probably do inspire us to face our fears...besides, I think a great definition for Courage is acting in the face of fear. Right?
You rock!
Wow, girl! Way to go! That was wonderful and real, and heart-felt. I'm so glad you're doing these now. I can't wait to sit down with you and hear your heart each week. :)
EXCELLENT!
Wow, really great vlog. I have to admit, I haven't seriously considered doing one because I don't see a huge reason to. I really like the written word. But one thing the written word doesn't always do is convey emotion very well. Your vlog did! It was really beautiful and insightful!
Great job! I feel like I know you a little bit better now!
Fearless, not Crazy
Well done! I didn't know you're from Chipley! I moved from Sarasota to Tallahassee and now I'm in Chipley! Sweet people, slow living!
I can't get in the slow lane yet- not sure I ever will. By the way, if you want to print out a pdf of the Life Manifesto I posted the other day, I put the link at beverlylewis.wordpress.com.
I linked this comment to my "just for fun" blog since we just did the Econfina - thought you might like a ride on the creek. : )
Great to meet you!
Hey Amanda - wow, well done! What a great vlog, and I also had no idea how to pronounce it. Now I'll think of you when I read it! I admire your courage, and feel so inspired by your spirit!
Sunshine xx
Woohoo!
Great job! I have done a few Vlogs (and I do pronounce it like blog with a v, so who knows what it really should be!). But lately I just do not do my hair or makeup and do not want to scare people.
Video killed the blogosphere star
You guys are so great. I really really love all the love. I didn't plan to get all bawly when I started, and I actually started to re-record the video and then I thought, "Nope. This is actually exactly what I was afraid of, so I might as well get it out there." There are plenty of days when my tear ducts are by far the most active part of my body (I'm an easy crier), but no use pretending to be anybody else. Actually, if you can't pretend to be somebody else on the Internet, when can you? Ah well, it's out there now :-)
You're gorgeous! How fun to see you and hear you talk! Congratulations on walking into that room full of snakes..
We have to wait a WEEK for the next one?
:) Beautifully done!
Hi Amanda :)
I came over from SITS and I love your first vlog - congratulations! (love your playroom too)
I love that you felt your fear and got behind the camera to share yourself with your readers. You were so raw and honest and I admire that deeply.
I think I personally have become much more fearful since having a child - I hardly recognise myself any more. it's sad, but maybe I'm growing up ;)
Isn't it great how our kids continue to be an inspiration though; when my DD is being bullied it's me that ends up fearful and in tears, she simply tells me that her angels are with her, always willing to play :)
How did I miss this?
This is GREEEEEEAAAAAT (did you get the Tony the Tiger reference with that?) No, really. Isn't it amazing the fears you develop as an adult. I feel the same way. I can't even go on a swing without getting a pit in my stomach or do a cartwheel. Why does that happen?? Good for you girl. NOW you are ready for Oprah! :)
Total 14 comments
From the time Billy could walk -- at about 9 months -- he's been falling over. He was like a little Charlie Chaplin, silently stumbling through one wacky pratfall after another. At first, I thought his big head was throwing him off balance. At nine months, most babies are all head and most aren't walking. He ran constantly, in this falling-forward-head-first posture that looked a bit like somebody trying to balance a pumpkin on top of a pole.
For a long time, I firmly believed that Billy had a balance problem. I was assured by multiple occupational therapists that the fact that he stumbled and fell frequently was a sign that his vestibular system was screwed up and he found balance difficult. His underdeveloped nervous system couldn't process the information about spacial orientation, leaving him constantly off-balance.
At the age of four, Billy still stumbles and falls frequently. But we're starting to realize that his biggest problem is quite simply looking where he's going. He'll be looking at some kid riding a bike behind him while he walks in the opposite direction and directly into a tree. He used to look at his feet while attempting to peddle a tricycle - and he'd drive it into the wall.
However, we got him a Razor scooter this summer and realized that when he wants to, he can balance extremely well. And when he pays attention, he doesn't run into stuff. I've mentioned here before that he can zip in and out of furniture, stop on a dime, and pump one foot up in the air behind him while circling the dining room table.
About a month ago, he also started a special needs gymnastics class. Last Saturday, the coach asked him to walk across the high balance beam. He did it, holding Dave's hand, without a problem.
Then she upped the ante a bit and asked him to kick as he walked across the beam. Again, no problem. Taking it one step further, she asked him if he could do the same thing, only going backwards. Everyone was astonished when he kicked his way backwards across the beam without a single stumble.
Never in a million years would I have believed he could be that good at something requiring that kind of balance. Never in a million years could I have done that. (At left, you'll see a video of Billy's first ever attempt on the balance beam. Unfortunately, we didn't get his most recent triumph on video!)
Naturally, we have to rely on experts -- doctors, therapists, teachers -- to learn how to best support our kids on the spectrum. But sometimes, I've found, I can learn the most simply by watching Billy. And as time wears on, I've started to trust more what I see with my own eyes and to challenge assumptions made on the basis of a short, or otherwise limited, observation.
Balance and coordination are common problems among autistic kids. But my child is as individual and unique as a normally developing child; his support/education/therapy needs to be carefully coordinated to fit him as an individual -- and that plan may, and should, change over time as he changes. If we continued to focus on Billy's vestibular system, rather than on strengthening his visual tracking, we could waste a lot of time. And fail to address a fundamental problem that could affect his ability to read, write ... and avoid trees.
It could be that Billy's nervous system has matured a lot in the past two years; I'd certainly like to think so. Maybe the Razor scooter has a miraculous effect on balance (Note: I do not actually believe this). Regardless, we're going to work on his visual tracking through use of simple puzzles, books and other hands-on toys and put a check-mark (for now) next to "balance."
And prepare for Olympics 2020!
(By the way, if anyone has any good suggestions for exercises/tools that help improve visual tracking, I'd love to hear them!)
NICE!
That is very encouraging! I wish we had something like this in our area. It seems like Florida has some wonderful resources for special needs kids. Is Billy a tip toe walker? Milo has been since before he even started walking... he is up on them most at home where he refuses to wear any footwear. He wears orthotics now.
Gymnastics
This is our city program and it is AWESOME. The whole semester costs just $48. I figured I could make that much in one good yard sale of old crap I don't use any more :-)
There are places in Florida that have really wonderful programs, and like most states, there are areas where there's very little available. One of the reasons we moved to Tallahassee was to have access to a wider variety of services and programs. FSU has an Autism Center and he's now going to speech therapy there, both individual and group and they are truly wonderful (and affordable!).
Impressive
That is really impressive. Unless the olympics have an event for balancing a cheeseburger in one hand, an atlas in another and a bag of ice on the head, it looks like my son will be in the audience with me rooting for Billy on the beam.
How great that Billy found something that he likes! Interesting comments on the vestibular system. Amazing how motivation can change attention and balance! I always tell parents that listening to their gut should come first. I think you really keyed into those visual problems- some that are directly connected to the vestibular system and some work on their own. Things like looking at the bike pedals are often an over reliance of the visual system and an underuse of the other balance systems (vestibular & proprioceptive). Walking into a tree because you are looking the other way is just an attention thing! A good website for some vision exercises is eyecanlearn.com if you want to check it out (I used it myself when I was in vision therapy!). Playing keep the balloon up and popping bubbles are good visual tracking activites.
Sounds pretty typical to me...
Go Billy!! Since I haven't witnessed your son falling all of the time, I can't specifically comment. However, everything you mentioned in your post sounds so typical to me! My (typically developing) 3 year old is constantly running and falling because he does not look where he is going! I teach ballet and I witnessed a little 4 year old, holding hands in a line to walk to the stage for recital. She turned her head to talk to the girl behind her and...ran into a pole. She was so upset that she refused to dance. Her Mom did finally get her to go on stage, but she just stood there and did nothing! :)
P.S. I think my baby boy has some eye tracking issues, so I'm interested to check out Joni's suggestion!
BTW- Hi from SITS!!
I Can Relate
Hi there, fellow Spring Chicken!
My daughter is a klutz! Like your son, she doesn't always pay attention, so she trips, or runs into things a lot. However, my daughter was a late walker. She didn't walk until 19 months because she had low-muscle tone in her trunk area. She still does, so she struggles with physical activities. We had her in OT for awhile, be that didn't seem to do much. I ended up enrolling her into a gymnastics class at a nearby place. Her teacher is awesome and has her doing things I never thought she was capable of! He says her strength doubled after just 3 classes! Over the summer, she went to a camp where she went swimming, horseback riding, and all other sorts of physical activity. She did great, and her gymnastics teacher saw another huge increase in her strength. Yay! Sometimes we just have to set the bar higher than we think is possible for our kids. They surprise us!
Balance and the Kid
@BigDaddy: Move over -- I'm going to need a spot right next to you guys ... and save me a cheeseburger.
@Joni: That's very interesting what you say about a child relying more heavily on visual sense when they don't trust other balance systems. That makes a lot of sense. I'm definitely going to try the balloon and bubbles, because those are two of Billy's favorite things in the world anyway!
@Jen: Too funny about the poor girl at the dance recital. I was like that as a kid too. I once walked out of high school chemistry and ended up head-first in a metal trash can because I wasn't looking where I was going. Let's just say I'm starting to see where some of Billy's genetic input may have come from ;-) But his "klutziness" goes beyond just being clumsy. He falls ALL.THE.TIME. Walking across a flat floor, he'll trip over his own feet. He's getting better, but we constantly have to tell him, "LOOK in the direction your FEET are going!" He's started doing this funny thing where he stares down at his feet and asks, "Where ya goin', feet?" Good question.
@Cheryl: That is just what I needed to hear. Billy was diagnosed with low muscle tone too. And like you, I didn't see that much change in OT. I'm hoping that gymnastics, which he LOVES, is just going to generally strengthen him, like you said you've witnessed. We're going to try swimming next summer, and I keep meaning to find out about a local horseback riding program. You've reminded me and I"m going to call tomorrow!
Razor scooter
I bought my daughter a Razor scooter when she was four, and I think learning how to balance on her scooter helped her learn how to ride a two-wheel bike when she turned five! Since she was almost four before she learned how to pedal, I never thought she would learn how to ride a bike so quickly.
That gymnastics class sounds so wonderful for Billy...a perfect fit!
Scooter Therapy
That's so interesting, Ginny Marie, because I feel like that happened with Billy and his tricycle. After he got the hang of looking where he's going while moving forward quickly, he got on the trike and pedaled away without running into the wall. We have yet to try him on a two-wheel bike. I look forward to that day with both excitement ... and dread :-)
Interesting comments about the learning to move fast and use the eyes at the same time- there's that pesky vestibular system again! There is a reflex that connects the ears and eyes that helps us focus our eyes on something while our head moves.
For low tone and postural strengthening I like karate and swimming. Some fun games are animal walks, wheelbarrow walk, climbing on playground equipment or an obstacle course in your house, playing twister, carrying/pushing heavy items (groceries, full laundry basket), wrestling play...
Vision Therapy
I've heard of alot of people that do vision therapy specifically for what you describe. We've not done it, but I think it involves alot of the visual tracking type exercises that you refer to. There are all kinds of theories about some kids not seeing well if they look straight ahead..just their peripheral vision is fully developed so they do some of that looking out of the corner of their eye. I've heard some people talk about depth perception issue which causes them to have the sensation of walking uphill so they always seem to be falling forward. I know people that have practitioners here, but I don't know how you find them or what they call themselves.
Total 11 comments
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.
So Informative!
I don't have an Ipad, but if I ever get one, I know who to turn to for advice!
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!
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
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
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
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
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!
Total 7 comments
Albert Einstein – who many believe was on the autism spectrum himself – once said, “Imagination is more important than knowledge ...”
Most children don't have to be taught to imagine; play is as natural to them as breathing. They push a car – or a block that they imagine is a car -- along the floor and say "vrroom, vroom" as soon as they can utter a sound. They cuddle baby dolls or pretend to eat or drink from toy cups and saucers. As they play at these things and imagine, they communicate, they connect with people, and they practice life skills.
Imaginative play is typically a challenge for kids on the autism spectrum. When most kids were starting to pretend, Billy was putting together the wooden track on his train table or linking up the trains and driving them along the track. When he played with blocks, his favorite game was "dominoes," in which he lined the blocks up one after another and knocked them down.
Before we knew better, we'd try to force him to act out stories with us. We bought herds of plastic Little People, toy soldiers, Disney characters, astronauts, Thomas trains and ark-loads of plastic animals. We have two doll houses, three barns, an entire plastic amusement park, a medieval fort, a Mars rover, a space shuttle, an elaborate toy kitchen, two play houses, and yes, a Noah's ark.
The lesson we learned: You cannot buy a child's imagination. At least, not Billy's.
The second lesson we learned: We can buy Willow's imagination. She jumps on any new toy like a duck on a June bug.
Following the Floortime model of “following his joy,” we invested, instead, many hours lining up both trains and blocks. Slowly – and I mean slooooooowly – things started to change.
At first, we were able to add a few minor “playful obstructions,” little challenges that complicate the game: Something is blocking the train track; the dominoes travel over and under objects, etc.
Billy still does a good bit of echolalia, repeating lines from books and TV shows. The next development step he made in imaginative play was to act out, in small ways, lines from books or TV shows. One day, several characters had a “jumping contest.” On another, an astronaut had a race with a pig. I couldn't have been happier if he'd composed a symphony.
So this summer I've made a point to spend a certain amount of time each day “practicing” imaginative play. Scheduling it might seem to defeat the purpose of following his joy, but there's method in my madness.
In the morning, I'll listen to whatever lines he's repeating. Then while he's napping, I'll try to set up the scene of that book or TV show with his toys.
For instance, one morning, he was stuck on “Where the Wild Things Are,” understandable since we'd read that as a bedtime story the night before.
While he was napping, I rounded up the characters from the story – or the closest I could approximate in our menagerie of plastic pets – and laid them out on the dining room table. Note: I moved this activity out of his play room so that he wouldn't be distracted by other toys while we were busy with our imagining.
I found one of his Little People to be Max and a taller female doll to be the mom. I found a dinosaur, a Shrek and a couple of other “wild things” and lined them up as well. I stole the bed from the dollhouse and dug out the toilet-paper-roll-boat we'd made in craft time the day before. Then I got a plate from the toy kitchen and put a plastic chicken leg on it, because as every parent knows, the story begins and ends with Max's dinner.
Billy surveyed all this with a suspicious eye. He suspected there was a lesson in it somewhere. “No circle time,” he informed me -- “circle time” is the way he describes any particularly boring lesson-like activity.
“No circle time,” I agreed. “This is about Max going to see the Wild Things.”
His eyes lit up. “Wild things!”
So I proceeded to tell the story with the characters I had laid out. I stopped to let him fill in some of he lines. His favorites: When the mother calls Max “wild thing!” and when Max threatens, “I'll eat you up!”
When we got to the part where “a forest grew” in Max's room, I felt a bump down at my thigh. Willow was holding a small house plant. I cannot say for certain that she was suggesting we use it for the forest, but I'm so used to things coming so easily to her (see her "Jurassic BooBoo" video for a masterpiece of imaginative play), that I didn't even blink at a 15-month-old making this leap. “Good idea,” I simply told her, and added it to the scene.
After a couple of rounds of Wild Things, Billy was getting a bit bored. At the next pause in my recitation, to my surprise, he changed the story.
“We have to find Saturn!” he told me and flew Max around the table.
“Saturn?” Then I realized that he was switching to his favorite episode of Little Einsteins. “No, Billy,” I corrected him, “This is Where the Wild Things Are.”
I tried to get him to bring Max back so that he could get in the little boat and sail to the window sill where Shrek and the plastic alligator were waiting. Completely forgetting that the point was for him to imagine something NEW, I was slightly irritated that my carefully laid out world wasn't getting used.
He sighed and came back to the table. We walked Max through his paces, sailing him back home to where his dinner was waiting for him. “And ...?” I prompted Billy.
He picked up the plastic chicken leg and bonked the mother on the head with it. The doll fell over. “She's dead,” he informed me, and hopped on his scooter and pushed off. I tried not to take this plot twist too personally.
Willow picked up the Mama doll, gave her a little kiss -- “Mmwah!” -- and put her in the bed. “Seepy (sleepy),” she said, pulling up the covers. She certainly is.
I learned an important lesson: Let Billy do the reciting. If he takes one look at the Wild Things set-up and wants to act out the Little Einsteins with Shrek and the dinosaur driving the Rocket, that's great.
I've gotten a little better at play time over the weeks. We used the toy barn and animals to act out the story Click, Clack, Moo. We used his Thomas trains and Little People to pretend The Little Engine That Could. And we've acted out Noah's ark ... with Batman.
And we made a Little Einsteins “golden pyramid” out of cardboard that Billy loved as much as any store-bought toy. He immediately swam all his Finding Nemo characters in and around it.
In fact, we find ourselves in a new development stage. While not inventing completely new stories yet, Billy is mixing and matching his favorites joyfully. A cow might say, “I think I can, I think I can” and a train might travel to the land of the Wild Things. Batman moves in an out of diverse roles with the ease of a plastic Lawrence Olivier.
On Monday we're going to make totem poles out of cardboard tubes, inspired by another favorite Einsteins episode. I wonder what Batman will make of those...
pretend play
From Amanda on Imaginative Play
pretend play
From Amanda on Hope
Total 4 comments
A shout-out to single parents: I don't know how you do it. I know this is Autism Awareness Month, but I've got a special message for the single moms and dads out there.
I'm a whiner, and I regularly use this blog to complain about every inconvenience in my life. But I also have somebody to complain to (oh, how he loves that), someone to point out the jelly in my hair, someone to gently lift my head up from the table and say, "Go take a hot bath. I got the kids for the next hour."
Single parents of special needs kids: Your capacity for strength, patience and persistence is so awesome it kind of ticks me off. You're making the rest of us look bad -- not that you have the time to notice. Not that the press holds you up as heroes. No, the single parents of special needs kids that the press covers 24/7 are ones like that insane lady who locked herself and her autistic son in a hotel suite, murdered him and tried (unsuccessfully) to kill herself.
Her story was and is a tragic one. But if you aren't aware of them, there are single parents handling their lives -- and their special needs kids -- with love and devotion every day. They never have enough time or energy or money to meet all the needs that are thrust upon them. They are tired and dedicated, happy some days and worried most of the time, inspiring to me and they don't even know it.
Case in point: Let's call her Sue. (Though that's not her name. I'm not going to write about people without their permission -- unless they are a crazy celebrity.) Sue has not one, not two, but THREE children on the autism spectrum. One son is more severely challenged than the others, 14 years old and still minimally verbal. She rarely gets a full night's sleep. She works full time and still volunteers to help other parents navigate the mire of government programs, special education services and medical tests that come with an autism diagnosis. And I know all this because she approached me in the lobby of a therapist's office with a bright smile and said, "You have a beautiful son. What's his name?"
Sue then told me about her children, describing the fascinating way one them put together block towers, the love her second child had for art, and the amazing capacity that her 14-year-old had for love. "He sees everyone the same," she said. "I've learned a lot from him."
And she said all this, not with the slightly manic, crazed tone of a woman over the brink. No, she was genuinely admiring of her special kids. I only got the details about the sleepless nights and challenges of their autism after we had shared stories for a good half-hour. Rather than a gripe session, she turned every story into great advice about navigating the school system.
I'd love to tell you that after my encounter with Sue, my whole outlook on autism changed and I now see it as a great learning experience and chance for me to grow spiritually. Nah, I'm not quite there yet. I still wish Billy didn't scream when he gets his hair washed or repeat "The Easter Beagle" non-stop throughout breakfast. But I cut him some slack about carrying a bar of soap around the house. I don't see the life lesson in that, but if it makes him happy and he's not hurting anybody, so be it.
But Sue opened my eyes to the fact that single parents have it a heck of a lot harder than I do. As author Robert Fulghum said, "If you break your neck, if you have nothing to eat, if your house is on fire, then you got a problem. Everything else is inconvenience."
Even if you don't have Sue's enlightened outlook on life, I admire you, single parents. (In fact, truth be told, Sue would probably be a little hard to take over long periods of time, because I kinda start feeling like the world's worst mother around her.)
So do me a favor this week: hug a single parent. They probably need it.
Thanks! I needed this!
Loved This
From Amanda Broadfoot
Total 3 comments
We found a church today. At least, I'm pretty sure we have. We've been looking for a while, and talk about finding something right under your nose: We ended up at the same place where we've been attending Kindermusik every Wednesday night for the past 5 months, Good Samaritan United Methodist.
Dave went to the nursery with Billy and Willow to help ease Billy into his new surroundings. We explained to the nursery staff that Billy is autistic, and they were all just wonderful. After an initial, brief meltdown over the site of Mama high-tailin' it to the grownups' room, Billy apparently settled in very nicely. At coloring time, he helpfully shared his orange crayon with everyone, whether or not they wanted a bit of orange on their drawing and seranaded the whole class with a couple of verses of "Jesus Loves Me."
I got a glorious hour to sit in a beautiful room, sing beautiful music, pray quietly and ponder philosophical and spiritual points. It felt downright luxurious. Like a spa for Mama's soul.
There was a time when I took going to church for granted. I grew up in church with a tight-knit group of friends who went on trips together, put on plays, occasionally behaved badly and yet, were ultimately baptized into a family that was more than the sum of its parts. Church was fun -- and yes, uplifting and spiritually rewarding -- but when you're a kid, the fun is what gets you there. I always wanted my children to have the same opportunity.
When we moved to Tallahassee, we started looking for a church to call home. One of our first stops looked very promising: It was known for its extensive children's program, which was a priority to me. For a couple of Sundays, we attended, with Dave going to children's church -- a much more structured environment than Billy was used to -- with Billy. During the Bible story, Billy's echolalia (repetitive talking) continued. He was overwhelmed by all the new people and the number of structured activities; each small group quickly changed from one station to the next activity every few minutes. And he melted down.
But Dave reported to me that he was able to get it under control and felt that with a little time, Billy would settle into the routine.
The next Sunday, though, the teacher made it clear to Dave that Billy was too disruptive to the rest of the class. Ultimately, Dave just took Billy outside to play. When he told me what happened, I wrote an email to the head of education. I was upset, and I probably got a bit high and mighty in my quoting of the Bible and Jesus' words about "Whatever you do to the least of these, you do unto me," and waxing poetic about how it was supposed to be God's house and no one, certainly not a child, should be turned away.
Well, I felt genuinely mortified about 5 minutes after I sent the email. But shortly thereafter, the phone rang; it was the head of education, and my mortification couldn't come close to matching hers, she said. She couldn't have been nicer. She explained that Sunday school teachers were volunteers and they weren't always equipped or trained to handle special needs. I assured her I understood, and the last thing we wanted was to ruin any other child's experience at church. I thought we were really making headway, were really coming to a consensus. Next time, I promised I would attend with Billy; I promised to take him out at the first sign of a meltdown, and somewhat reluctantly, I agreed to teach him his Sunday school lesson by ourselves, in the hallway, so that his echolalia wouldn't disturb the other kids' lesson.
Then before we hung up, she said something that completely changed my mind. "Of course," she said, "I still can't promise you it's going to work."
You can't promise me it's going to work? If it doesn't, then what? We get expelled from church? Really? Ah, just forget it.
Compare that with the response I got from a gentleman at Good Samaritan today: "If we're doing our job right as a church," he said kindly, "you and your son will always feel at home here. No matter what." I admit it: I burst into hysterical tears. Great impression on the new congregation: Mascara smearing everywhere. I'm trying to talk and say, "I'm not usually like this," (If you know me, you know that I actually am just like that, and just lied to my new church), while snorting and wiping my nose. Lovely.
Everyone was so kind. The pastor even said that she had just this week spoke to someone about starting a special needs Sunday school. I assured her there was such a need for it. I'm sure there are plenty of families with special kids who could use the spiritual support of a church family -- not to mention an hour of real, literal peace.
If you attend some house of worship, I'd really love to know how it handles kids with special needs. If you don't know, could you do me a favor and ask someone? I have a couple of reasons for asking this favor: First of all, I'm curious about the various ways this is handled and looking for ideas. Secondly, I think that the more people ask this question, the more likely the issue is to be addressed.
I know most places probably haven't addressed the issue simply because they don't have any special needs kids in their congregation. But that's one of those chicken-egg scenarios. Maybe there aren't any families with special needs in the congregation because attending is just too hard for them.
Again, I'm not trying to give financially- and manpower-strapped churches, synagogues, and their ever-dedicated volunteers a hard time. Not in the slightest. If anything, most of us parents of developmentally challenged children really wish our kids could fit right in, without any special accommodations whatsoever. I hate the idea that anybody would think we expect them to remake Sunday school for Billy -- but would it be OK if he just walked around during story time, while listening, rather than having to sit perfectly still? We'll go with him. We'll keep him from dismantling the carefully put-together Lego Noah's ark and try to keep his singing contextually appropriate (he's just as likely to launch into "The Gambler" as "Jesus Loves Me").
Because let's face it: When it comes to spiritual growth, we all have special needs sometimes.
Church with special needs child
Thanks for getting in touch!
:)
From Amanda
Buddies
Church with My Special Boy
Our son has not been diagnosed with autism because he is very high functioning, and the school psychologist is even on the fence if he really has autism or not. I think he has Asperger's personally, but what do I know? I'm just a mom. I am taking him soon to have a screening done, though. Going to church has become increasingly difficult for us. We have been attending a non-denominational church, and he has extreme difficulty staying in his seat for the whole service and refuses to go to Sunday school even if I stay with him. The last time we went there, the ushers tried to make me sit in the back of the church when I took him to the bathroom and let him go outside for a minute to get some fresh air and have a chat about staying in our seats at church, and he was running around in the foyer. I have to stay with my husband because we need to be a team in order to keep our son on track. One lady grabbed his foot as I was walking back down the aisle. I was so upset, I left my son with my husband and went back to the bathroom to cry. Then the usher tried to block me from sitting next to my husband! After church, the pastor sat down with me to talk, and she told me that God can help my son to have a full and good life. DUH! I don't doubt that. I'm only doubting that I can pay attention in church while constantly thinking about my son bouncing in the seat, and trying to provide snacks, books and toys to keep him from running the aisles and possibly bolting out the door. He gets upset when people he doesn't know touch him, so that was a bad experience for him also. Since then, I haven't been going to church at all because apparently we are a nuisance to the other people in church, which makes me REALLY sad. I miss being in a church. I know some people are going to say it's just an excuse, but seriously, don't go there. You should put yourself in someone else's shoes before jumping to conclusions. Going to a restaurant is also an extreme challenge, so we RARELY do that. However, no one at Friendly's tells us that we need to change our table or sit at separate tables because our son is disruptive. I am praying about this and would welcome any constructive suggestions that anyone has!
Total 6 comments
If an elementary school music class and Floortime therapy had a baby, it would be Kindermusik. I've written before about what fans we are of this program, but having been through an entire semester now of Family Time at Good Samaritan Arts, taught by Jaci Niks, I can be more specific about what is special about Kindermusik -- particularly for kids with special needs.
Kindermusik isn't designed specifically for special needs kids; the classes are available for all children from birth to seven years old. But where a traditional, highly structured music class or lesson might be impractical for an autistic child, or a child dealing with any kind of developmental delay, Kindermusik provides a positive, flexible environment, while still encouraging development of real skills through hands-on participation.
We participate in the Family Time class, which has a mix of ages and allows Billy and Willow to interact in the same class. Like Floortime therapy, Kindermusik supports the child-led philosophy. So while the teacher provides a certain amount of structure, with activities and songs selected prior to class, there is plenty of room for individual expression and creativity. From playing with rhythm instruments and scarves to rocking and listening with Mom and Dad, the activities encourage exploration and family bonding.
Take-home materials include CDs with each unit's music, a set of rhythm instruments (like egg shakers or wood blocks), copies of the books introduced in each unit, a puppet, a game, and a parent's guide with activities you can continue at home to reinforce the new concepts introduced at Kindermusik. Both Billy (age 3 1/2) and Willow (1 year) love and respond to the music. In fact, we hadn't originally planned to enroll Willow in the class, but she had such a positive, joyful response after a visit at 6 months that we decided to make Kindermusik true Family Time once a week.
Some of the music may be familiar to you. In our first unit, we worked with versions of "Row, Row, Row Your Boat" and "Ring Around the Rosey." Our parent's guide explained the origins of these songs, which I'd never known. We also learned new songs like the beautifully restful "Shalom Haverim," which has become a favorite calm-down song, and "Bubbles on Me," which Billy sings every time we blow bubbles. There are traditional American folk songs, music from around the world, such as the beautiful Nigerian Boat Song, and original tunes.
Activities during each class include a "Hello" and "Goodbye" song, a great way to reinforce social skills, a "Family Jam," when we all get to grab various instruments and play along with the music, story time, active listening, and a whole lot of various types of movement. We might be asked to listen for a particular phrase in a song, like "Hands all around, Jing Jang," and when we hear that phrase, we all run together and join hands for a circle dance. We might practice walking slow during the slow beat and jumping fast during the fast beat; or we might wave our scarves up high during the major key and wave them down low during the minor key change. Even if they don't undestand the terminology, you'll be amazed how quickly children pick up on things like key change and rhythm variations.
When we started the class, Billy mostly ran around and around the room non-stop. Our teacher, Ms. Jaci, taught me to let him be. I learned to follow his lead and bring the music to him if need be. Fairly quickly, he saw the advantage of joining the group and getting his pick of instruments. He loves to try out new rhythm instruments, particularly those that allow him to bang stuff with a stick -- and luckily, there are a lot of those.
All of our jaws dropped one night when he grabbed a wood block and started beating out a complicated, syncopated rhythm in time with the recorded music. He knows every song and poem by heart, and it always makes my heart swell to hear him reciting "Happy Little Me," which he learned at Kindermusik. He now loves to join the group for circle dances and playing with the parachute, and at the beginning of each class, he grabs all the stuffed animals lined up along the walls and sets them out on the story blanket for the hello song. Because obviously, they need to participate too.
I can only speak to our experience, and I believe we are truly blessed to have a phenomenal teacher in Ms. Jaci who seems to have a magical way with children of all developmental stages, and we have a great place to go in Tallahassee with Good Samaritan Arts (which also offers all kinds of dance and music classes to kids and adults). But the great thing about Kindermusik is that no matter where you are, you can try out a class in your area for free.If you do, I'd love to hear about your experiences, so please keep in touch!
wow
Wednesday December 21 2011 11:37:01 am
jennifer little
Absolutely wonderful! I can't imagine the joy you feel! What a Christmas gift!
Wednesday December 21 2011 01:36:16 pm
writerwoman61
I'm so happy and excited for all of you, Amanda! Sharing this on Facebook...
Have a wonderful Christmas!
Hugs,
Wendy
Wednesday December 21 2011 02:47:06 pm
Tracy Bane
I am so glad I was there! It still brings tears to my eyes, and I am sharing it with everyone I know!
Snippets 'N Stuff
Wednesday December 21 2011 09:36:16 pm
DeeAnn Lancaster
That was freaking adorable! I can't stop smiling. :)
Wednesday January 04 2012 12:18:49 pm
Jim W
What the. . . that was AWESOME! I got a little teary and this is my first time even reading your blog!
Thursday January 05 2012 07:13:22 pm
Maddy
Never say never. How fabulous.
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Total 10 comments