LIFE IS A SPECTRUM

2011_Billy_party_Madeline_SWING3

Neighborhood. It’s so old-school, right? Most of us probably live in places where there is very little within walking distance. We probably have to drive to school, to the grocery store, to the office.

 

I’m lucky enough to live in an American community in which I can walk my son to school. When I first realized that was possible, I thought it was cool, kind of a novelty. I thought it would potentially be an outlet for all the energy Billy needs to exert before he can settle down in the morning. I thought it would be a great way to talk about things we see, things we plan to do, where we are going.

 

All these things turned out to be true. But I had no idea what I would come to value most about our walks to and from elementary school.

 

High Fives
Every morning, Billy meets Mr. David on his walk to school and gives him a big high-five. Or a small high five. Or he just buries his head in Mr. David’s chest. It depends on his mood. Mr. David is his neighbor, and his hands are up, or his arms are open, depending upon whether Billy needs a high-five or a hug.

 

Santos
Billy used to be dog-phobic. SERIOUSLY dog-phobic. Still is with some dogs. But every Wednesday, we look forward to an encounter with the world’s sweetest and most docile Golden Retriever, Santos, and his owner. Because of this kind, patient neighbor, Billy is no longer completely dog-phobic. Though Chihuahuas still kinda freak him out.

 

Holidays
It helps to be known around the neighborhood if your child is going to Trick or Treat with the opening line of “Look at that Grandma! She’s a witch!” Particularly, if the woman in question is, at most, around the age of 40. It helps to be known if your autistic child decides that one particular house deserves to be Trick-or-Treated five times in a row. If you can act genuinely surprised and delighted the fourth time that autistic Peter Pan tricks and treats your house, you will absolutely be getting a holiday basket from the ‘Feet.

 

Outdoor Safety
Because we walk to school, I’ve had the chance to practice road safety with Billy. He’s learned to “wait at the edge” of the road and look both ways for cars. And when he ignores all my warnings and barrels toward the intersection, Mr. Cedric, the school crossing guard, has a few words with him. Mr. Cedric is one of the kindest, most thoughtful people I know, and he has a personal and encouraging word for Billy every morning. And in the afternoon, if Billy has had a good day, Mr. Cedric is one of the first people to celebrate that fact.

 

Nothing warms my heart more than the moments when the people in my neighborhood help me keep my son from running into traffic. Mr. Cedric is a god in our household. He’s like Santa. All I have to say is, “Billy, this is Mr. Cedric’s sidewalk, and he is watching you,” and immediately, he slows down.

 

Friends
Billy has a few friends he sees only on his walk to school. They’re all neurotypical. Some walk. Some ride bikes or scooters. Many of them call him by name. One truly beautiful big-eyed girl actually makes a point to knock on our door a couple of afternoons a week. She plays Wii with Billy, helps me feed the fish, chats about her school day, and generally renews my faith in the human race.

 

I’ll be honest with you: There are moments when I think it would be easier to NOT be out “in the neighborhood.” It would be a lot easier to pick Billy up and drop him off by car, because every moment and encounter is not positive.

 

But my neighborhood has shown me how understanding a community can be. And not just understanding, but also rewarding to both me and my son. If I do my job correctly, then he’ll be as independent as is possible for him; he’ll have to be comfortable interacting with the world around him.

 

I can only hope that he’s lucky enough to live in a neighborhood like ours.

 

Reader Comments

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It is special to live in that kind of neighborhood. But even more importantly - how nice that you take the time out to walk your son to school. I did the same thing with my son, even though every other child his age walked by himself.

We had some special moments, that I treasure to this day.

Good to see you back!

This is so much like Goldilocks' walk to school. And he too finds small dogs more frightening than larger ones. I think it's a sensory issue—all that yapping hurts my ears, too.

I love this post, Amanda! How fortunate you are to live in such a great neighbourhood!

Have a wonderful Christmas!

Hugs,
Wendy

Chihuahuas freak me out, too.

That sounds so amazing. That's a lot of holiday baskets, though. I guess that's the one bright side of living next door to Mr. Meth Head instead of Mr. Cedric. ;)

What an incredible testimony to everyone you mentioned in this post. Our neighborhood is kind of the opposite - our houses are so far apart that there's not much dropping in and visiting - the school is definitely not a walkable distance away. What a gift that you have an arrangement that works so well for you and Billy --- I have a feeling all of those people (and canines) you discuss are getting as much out of the deal as you are. Thank you for sharing all of this.

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school_apple

I was reminded recently of some words I wrote almost two years ago. Without looking up the exact sentence, I believe it was something along the lines of “I have no doubt that by the time he starts kindergarten, Billy will have caught up with his peers.”

Well, we're facing down the last semester of pre-K now and starting to think about Kindergarten. Is Billy “caught up?”

I don't even know what that means any more. Academically, he's pretty much learning at age level or slightly ahead. Anything that can be memorized, he nails immediately – whether it's his work on not. Sight words, songs, and even all the names of the United States are no problem He has even memorized all the other kids' social stories (as well as his own), so that if someone gets in trouble in class for not following directions, for instance, Billy immediately starts reciting the “Following Directions Book.”

In some areas, he's developmentally still lagging. Socially he has more in common with his (neurotypical) two-year-old sister than his normally developing 4- and 5-year-old classmates.

But then, in a lot of ways, he's just different. Not behind or ahead. Definitely not less. Just different.

His singing is one example. He loves to belt out “If I Only Had Brain,” from the Wizard of Oz (a current favorite), throughout nap time. Left to his own devices, he would add a soundtrack to every moment of his day.

And he has absolutely no desire to please anyone. He doesn't want his teachers or his parents to be unhappy with him – and will, in fact, shout, “Happy!” and point at us, as though he can command emotion – but the idea of “If I finish this worksheet, my teacher will be really pleased,” doesn't mean a hill of beans to him. He's more motivated by “The dry erase board is more fun than this worksheet,” and is, therefore, going to leave his seat and go color on the dry erase board the moment his aide's guard is down.

So Kindergarten is coming up. And his wonderful pre-K teacher, Ms. Jade, has begun discussing some of the possibilities for next year.

One popular option, she told me, is a “varying exceptionalities” classroom, where Billy could get one-on-one attention for his academic work. Then he would, when it was practical, go into his mainstream Kindergarten classroom.

When it first dawned on me that we were discussing putting him in the special education class for most of the day, I felt like I'd been punched. Currently, Billy's in an “inclusion” pre-K class, where half the 3- to 5-year-old kids are normally developing and half have a special need of one kind or another. He has one teacher and two full-time aides, with other specialists who come and go on different days.

But the varying exceptionalities – or VE – classroom may end up including just Billy and one other kid his age. Of course, he would have a mainstream class for part of the day, but would he be considered one of them? Would the other kids treat him as an outsider because he didn't spend most of his day with them? I thought about the recent birthday party where almost the whole class attended; would he still get invited to those?

The practical side of me realizes that Billy still needs much more attention than he can get in a mainstream kindergarten class. He will progress academically much faster if someone can keep him at his desk and away from the dry erase board. And I hear them when they say it's very hard to teach when one child is singing “Ding-Dong the Witch Is Dead” throughout math.

I'm so used to being in “fight” mode for my child, but this time, I don't even know what to fight for. Or if I should, for once, just chill and see what happens.

I question every inclination I have. If I pushed, like many parents have successfully done, to have him mainstreamed full-time, would I be setting him up to fail? And if he spends most of his day in the VE class, will he fail to make friends? Will there be any part of his day when it's OK to follow his “yellow brick road?”

It makes me kind of sad to think that we'll be teaching Billy, “As soon as you can stop singing all day long, you can join the 'regular' kids.'” I love that he feels the urge to sing all day – but I'd also like him to be able to know how to add.

So many of you have faced this dilemma. Some of you, I know, have opted for special schools. Some have opted for homeschooling (You.Are.Saints.). And some of you have had great success with the public school system.

I would love to hear your thoughts about how you made these decisions for your child(ren). Have you ever had to change directions? Have you ever regretted any of your decisions? If you could give me (and other parents) one piece of advice on this subject, what would it be?

As always, thanks for being there and chiming in.

Reader Comments

Inclusion or not

I am a special education teacher, but first I am the mother of a son with a disability. My son was born three months prematurely. He is grown now and in college. His main problem was attention issues and slow processing issues. He also had a hearing loss in one ear.
He was in inclusion classes through middle school then when he got to high school they offered resource classes - small classes for each subject for students with special needs. Inclusion was a nightmare for us. The students with the ability to ask for help or the most behavior issues got the help. My son was very shy and wouldn't ask for help. He did great in the smaller classes and felt so much more comfortable. He didn't seem to care about the social stigma because there clearly is one - he wanted to be taught in a place where he was comfortable. I teach in a resource - small class - now at the middle school level. I have the flexibility to give special attention where it is needed. I have also taught in inclusion classes at pre-k, elementary 1st and 2nd grades and high school all grades. For my own child, I preferred the smaller resource class - but it does depend on the teacher too. There are so many factors that come into play. Your child personality plays a big part. Are they really social? My son was not. Will they be really ashamed to be separated from their peers because the other children will notice and some of them are very mean others are really sweet and will be lifelong friends. I advise that you get all of the facts about your school. Go see the classes, meet the teachers, and see where you think your child will feel the most comfortable.

Just found your blog through the link on Thinking Person's Guide to Autism and had to chime in on this post, in part because when my Elliot was pre-K he used to sing ALL the time, often belting out, "I go to the hills when my heart is lonely" from the highest point on the playground and reading about your son so reminded me of that :)

Also wanted to encourage you regarding the kindergarten question, not to tell you what you should do but just to say what worked for Elliot. For 2.5 years he had early intervention in a small school run but the county's Board of Developmental Disabilities...and then it was time for kindergarten...and Elliot had to move on and out of that school because his intellectual abilities were too high to stay which is a GOOD thing, but also presented a major challenge.

Elliot was terrified for awhile of the big school (kindergarten orientation was an overload/anxiety disaster), and I was terribly worried, and we had some rough days early on...BUT he is now doing really, really well, so well that volunteers have remarked about how much he has grown since the beginning of the year. Elliot doesn't have a full-time aide, but his speech teacher watches out for him and steps in whenever there are difficulties in regular classroom (and she and I keep in very close contact via notebook and email about how he's doing), he has a special place in the classroom just for him where he can go to to calm himself down or just "take a break" when he needs it, and he has access to OT and speech and other special services throughout the week.

The lunch room can be overwhelming, but he has headphones he wears to block out the noise, and he's the odd kid who kicks around in the mulch looking for treasures at recess, but sometimes kids join him and help him look, and sometimes he has good give-and-take interactions with them. He's not teased or bullied, just still trying to figure out how he fits. Elliot's speech teacher has done an AMAZING job not only with him but in reading books to the rest of the class about kids with sensory challenges that can result in strange or disruptive behaviors at moments, and she intentionally engages him in playing with other kids, either during speech or (now that the weather is starting to warm) at recess.

So for our family, I am now glad we let Elliot be in a place to try these new things and to have constant support (from his classroom teacher, speech teacher, specials teachers, bus driver and aide--he rides a special ed. bus). It IS a hard call making that decision--there are so many worries for you and for Billy. But IF you can trust the people who will be working with Billy (and this was key for me--I TOTALLY trust his team--his speech teacher is amazing at knowing what he needs and problem-solving to get through roadblocks that sometimes get thrown up), then they can be flexible and adapt to his needs, make whatever changes are necessary along the way.

Good luck to you as you work through your options to find the best one for Billy!

I don't have any direct experience with autistic kids, Amanda, but Hope has learning disabilities that require her to have a "Special Education Plan." While I appreciate the extra help she receives, I think she experiences a certain amount of stigma from her middle school classmates.

I agree with Maura...you're the best one to make a decision about your own child!

Hugs,
Wendy

I'm sorry you're facing such tough questions, Amanda. But if there's one thing I know about you, it's that you'll think think this through, and you'll absolutely make the right decision for Billy, whatever that may be. Just let your love and instinct guide you. This will work out, because you know him better than anyone.

I forgot to add that while she is in school, my daughter does have a para. She is supposed to be using the para less by 25% each quarter. First quarter, 100% para help. Second quarter, 75% para help. And so on. The school isn’t being as cooperative with that goal as I would like them to be, but they are trying.

If duct tape was an option, my six-year-old gypsy would spend her day crab walking around the classroom with a chair affixed to her butt. I know that a teacher would love to tape her to a seat, but I seriously doubt that it would do much more than present the girl with a challenge that she would be more than happy to overcome. She is six, and in kindergarten. She should be in first grade, but we held her back a year to help her acquire basic skills. Academically, my daughter is now ready to move on to the first grade. Emotionally, she is ready to enter kindergarten. She has no children her age that she considers friends. In my daughter’s mind, her best friend is my wife’s 30-year-old, married, co-worker and girl friend. We know that in order to function in a main-streamed classroom, my daughter would need a para by her side every minute of the day. It is the only way she would have a chance at remaining focused on her work, as well as the only defense against having her disrupt learning for every other student in her class. We agree with our behaviorist doctor that the biggest thing our daughter needs is to learn how to work independently, without the constant, direct supervision of an adult. The best program that we developed, in conjunction with our daughter’s speech therapist, occupational therapist, school counselor, and an extremely caring preschool teacher, is to have us homeschool the core subjects. We send her to the local school for 90 minutes each day. She receives her speech and occupational therapy, and attends “extras”: art, music, computer, and PE classes. This was the best way to meet her interesting mix of needs. She does not interrupt her homeschooling brothers in the manner that she does a classroom full of children her own age. After a semester with children her own age, she has yet to learn any of their names. This socialization situation does not bother me. My daughter is a happy, energetic, care-free girl. When she desires friends her age, she’ll make them.

For my wife and i, we knew "something was up" with S when he was in preschool, but we struggled with getting a diagnosis until he had already entered the school system. Since then we have had an IEP and worked on updating it each year. While he is "mainstreamed" he has to have an aide with him at all times. Even though his IEP states he is to have a one on one aide, his aides have often been assigned several students at once.

So, for us, we sort of stumbled into a mainstreaming situation and been going with it since.

I think you're in the best position to know what's right for your son. In my case, they were initially going to offer my daughter to be in a regular classroom with minimal support (45 minutes of a resource specialist a month) or the special ed classroom, but mainstreamed for academics. Neither of these choices made sense to me. During the IEP, things changed and we were able to get what we wanted--a typical classroom with a behaviorist. This has worked great for us. My daughter got to keep her behaviorist for first grade. She's doing pretty well, so I'm not sure she'll get the behaviorist for next year.

Before my daughter started kindergarten, the Assistant Principal did express concern about my daughter being in a typical classroom if there wasn't going to be an aide. The demands in these classroom can be a lot and not every child on the spectrum can handle it. We took the plunge and the AP later agreed that this was absolutely the right choice for my daughter.

You can always try one thing and change it during the year if you don't think it suits your son.

Good luck!

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The Internet is both my salvation as a parent and the bane of my existence. You can find anything, any opinion, any oddball group of people uniting to discuss their shared obsession. At the best of times, you can get some really great information, advice, support and ideas from the right website. Or you could waste 45 precious minutes playing a Space Invaders game you stumbled across ... or so I've heard.

If you're parenting an autistic child -- or any child for that matter -- there are plenty of sites out there dying to separate you from your hard-earned cash. Some of them are worth it and some aren't. However, there are some really great sites out there offering, for some altruistic reason, their goods for free. We love you. And here's the Broadfeet salute to some of our favorite sites with free stuff for parents and kids:

Starfall.com
We credit Starfall with teaching Billy the alphabet. Designed for teachers and parents, the site has pre-reading and reading activities, including an animated alphabet that Billy loves! After you graduate past the alphabet, there are animated interactive stories that teach phonics, and well as games to promote reading skills. Downloadable coloring and worksheets accompany each level. Educational materials are also sold in the Starfall store, but there are plenty of free goodies to enjoy. Our favorite interactive stories are "Peg the Hen" and the "Car Race."

Babybumblebee.com

We're big Baby Bumblebee fans and have the complete set of DVDs and flashcards. For more on the program, click HERE. To get to the free stuff on their website, though, click on FREE DOWNLOADABLES on the left-hand side of the screen. You can download books and flashcards, educational posters, handwriting practice sheets and more. The page is a bit of a mess so scroll through carefully to find all the options.

EnchantedLearning.com
Speaking of mess, this wonderful site hasn't met a font it doesn't love. Design challenges aside, though, the content is awesome. There are a million easy craft ideas from masks for Mardi Gras to a "Litter Bug" for Earth Day. There is almost too much information here: songs and worksheets on music theory, books to print, homework help, games involving dinosaurs. It's like wandering through an online thrift shop where everything is organized according to the whim of the owner; but then, I like thrift shops and every time I go to this site, I find something new and delightful.

PuppetResources.com
Puppets are a great rainy day activity, but when I'm sleep-deprived and not firing on all cylinders, making up interesting stories is a bit beyond me. Acting out Mommy and Daddy's last fight about the right way to organize the dishwasher is not really as compelling to the kids. PuppetResources.com has a searchable library of free scripts of classic and new stories (specify in the search whether you want religious or non-religious scripts). Kids don't really care whether you have an actual puppet theater or not (you can make one easily out of a big appliance box), but if you'd like a good one, Amazon has a selection such as the tabletop theater shown here.

Kididdles.com
Ever get halfway through singing a kids' song you thought you knew and realize that you don't know the words? Kididdles has the lyrics, midi files of the tune, and even sheet music for an impressive library of songs. There are also downloadable activity sheets to accompany favorites like "5 Little Ducks," "Three Blind Mice" and "Farmer in the Dell." Well-designed site that you have to join, but it's quick, easy and free to do so.

Storynory.com
I was singing the praises of Audible.com to my Circle of Moms when one of them pointed me to this tres cool site where audio stories are FREE. Everything from fairy tales to bible stories to original stories by the creators is available to keep your tike entertained in the car or stroller or preoccupied in the doctor's office waiting room. New free stories are uploaded every week, and downloading is a simple as a right-click of your mouse.

Education.com
This site can be a bit overwhelming, even though it's well-designed and organized, simply because of the volume of content. As the name suggests, it's about education from birth to returning to college and everything in between. We spend most of our time in the education.com/activity/preschool/ area, checking out the preschool-appropriate recipes, science projects (yes, science projects), games and crafts. Do you know how to play Jan-Ken-Pon (Japanese Rock Paper Scissors)? Have you ever hatched your own preying mantis? Me neither, but if we get the urge, Education.com has the instructions.

SchoolExpress.com
This site boasts 16,000 worksheets! In other words, every kid's nightmare and every exhausted teacher's 15 minutes of peace. But there are also Flash-based interactive storybooks, thematic teaching units based around various holidays and subjects, and free downloadable software that includes a Bingo game and several interactive math, phonics, geography and spelling programs. Warning: click on Funtime only if you aren't susceptible to waste time on bad versions of '80s video games.

VisualAidsForLearning.com
I highly recommend a picture schedule for any preverbal child, whether autistic or normally developing. It helps them understand their day and teaches them to make choices, an important step in strong communication skills. We used a digital camera and took our own pictures (of lunch, bathtime, teeth brushing, etc.) and printed them out, but that can be very time-consuming. There are plenty of places online where you can buy starter icon packages, but this site has some great support tools for getting started with a picture schedule, providing a basic package of icons completely free.

Notebookbabies.com
Just hilarious videos. A teacher makes his own animated stories to teach lessons about owls, frogs, sharing, bullying, etc. My personal favorite is "A Few Facts About Owls."

Reader Comments

It is a very informative and useful post thanks it is good material to read this post increases my knowledge.

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