Thursday, July 30, 2009
Wednesday, July 29, 2009
Tuesday, July 28, 2009
The trampoline has many uses besides a place to jump. We've used it as an ottoman. Plop a tray on the cushion and it becomes a coffee table. The kids sit on the floor and use it as a table top for play, as seen in the photo.
Thursday, July 23, 2009
The Creation Museum is INCREDIBLE and all of us wished for more time to spend there -- we all want to return at a time when we can see it at a slower pace. And we all would like to return at Christmas, too.
The lifesize Noah's Ark is jaw-dropping-amazing.
My photos loaded out of order -- and I'm too PooPed to straighten them out.
The cousins had a fine time playing the Wii in the hotel room. If you ever go to the Creation Museum, be sure to stay at the Ashley Quarters and rent the Wii for the night. The kids will love you for it! :)
Monday, July 20, 2009
Apprentices are people who desire to learn from, to let themselves be guided by an expert.
Apprenticeship programs are live and in person. They're not correspondence courses or long distance learning programs. They don't rely on repetitive, rote memorization and drills. There's an active participation on the part of the apprentice, hands on, while learning.
The experts gradually hand over more and more responsibility to the apprentices, as the apprentices are ready for more responsibility.
Interestingly, Barbara Rogoff studied child development, and she describes how, in early child development, children apprentice their parents. One of her books is titled, "Apprenticeship in Thinking". She uses a phrase, "guided participation" that describes the relationship between a parent and a child.
In autism, that relationship between parent and child is off track. RDI(r) has a huge emphasis on restoring apprenticeship, on restoring the parent/child relationship, establishing the parent as the guide or expert, and the child as the willing apprentice.
In autism, we see our children controlling everything around them. Taking over. Unable to be guided. Unable to be an apprentice. Interestingly, the most popular intervention ignores the lack of apprenticeship in autism and focuses solely on behavior as a replacement.
A couple of years ago, a Wilton cake decorating class gave me an opportunity to be an apprentice for a few weeks. The first session was a lesson in making icing. The certified instructor made a recipe of icing for us, right there in class.
Being an RDI(r) mom, I thought about all of the mental processes that were involved. Taking the class really illuminated for me a lot of the processes that RDI(r) sets back in motion in a family.
I had to acknowledge the Wilton instructor as the guide, the expert. (I wouldn't ask my next door neighbor whose business is snow removal and lawn care to teach me to decorate a cake!)
I had to understand that making icing is about more than the rote following of a recipe. (Flexible thinking, creative problem solving)
I had to be able to share attention with the instructor, to look where she was looking and to see what she wanted me to see, and to simultaneously process her words and her actions. (Reciprocity, attention sharing, attention shifting, broadband communication) **Interestingly, not ONCE did she utter the words, "Look at me!" followed by, "Do this!"
I had to be able to see what she spotlighted for me, and why. At first, the icing was quite thick and firm, and the instructor explained that this icing was the right consistency for some tasks but not others. She allowed us to feel the consistency. She shared with us from her experience and we had to share attention with her. (Attention shifting, attention sharing, perspective taking)
She thinned the icing with water to a new consistency, and again, allowed us to feel it as she described what icing in that consistency can be used for.
And she thinned it yet again.
Each step, the instructor was watching us for feedback. (reciprocity) Were there questions on our faces? (non-verbal, 2-way communication) Had everyone seen the step? She paced her lesson in a way that she knew we'd all seen each step, understood, and were ready to move forward.
There were a dozen or so students at the table. Not one of us tried to take control of the lesson and guide it ourselves. Not one of us tried to change the lesson into something else. We had established the guide as an expert to apprentice, we trusted her to guide us, and we chose to apprentice her through not just that lesson, but one night a week for a month.
And then she handed the responsibility to us. We were expected to return to class in a week with the proper icing consistencies to begin to learn to decorate a cake.
When a child on the autism spectrum isn't a good apprentice, the tendency is to take over for their part of the attention, too, prompting, pushing, always trying to force compliance in place of joining and apprenticeship. Skills and academics take a front seat, while the lack of joint attention is ignored.
I had used the behavioral route for so long, I had lost sight of what apprenticeship looked and felt like. Choosing to become an apprentice, a student in a cake decorating class, helped me to define and visualize what, exactly, I wanted to go back and re-do, and why, in terms of remediating the core deficits of a child on the autism spectrum.
Sunday, July 19, 2009
A local psychologist was training to become an RDI(r) Program Certified Consultant, and I decided to try RDI(r) while I was finding and training new ABA staff.
That was almost five years ago. We never returned to ABA.
ABA relies on observing and changing behavior, from the outside.
RDI involves behavioral changes within a developmental framework, where, to quote RDI(r) mom, Tammy Glaser, "We are changing our behaviors but we are trying to understand why we are changing matters. "
ABA "works". My daughter learned everything we taught her in ABA. It's just that we were targeting the wrong areas. The stuff we taught her in ABA went waaaaaaaay out of developmental order, and, while she memorized a bunch of information and could perform on command, she was not interactive and could not manage in a regular classroom.
She learned exactly what we taught her, including some bizarre learned helplessness that happened as a by-product. (I wrote about learned helplessness here and here.)
If we'd had a different instrument than the ABLLS to guide the guides, we would have had a much better shot at "ABA-ing" the remediation process. But we needed a more neurodevelopmental instrument than the ABLLS provided.
Having used a behavioral approach, I view RDI(r) as being very behavioral as I change how I use myself. For example, if a child doesn't have to shift his own attention (because the parent does that for him), then he won't (or he can't). But changing the adult in a way that stops the adult from verbally directing attention all the time gives that child opportunities to shift his own attention. You're making a change in the adult's behavior, and that, to me is behavioral. Choosing the behavioral change to make in the adult is based upon the developmental need of the child.
When the child begins to shift his own gaze and attention, orienting his body on his own, the child is able to make new discoveries about what it means to shift his own attention, and now he has another opportunity with new information to process and respond to.
I had to change my behavior in order to make opportunities for my daughter. Slow down. Shut up. Wait. Give her the time she needs to think her own thought and take her own action. Dr Gutstein often reminds parents how we sometimes have to slow down in order to speed up.
RDI(r) was a catalyst for teaching me to give my child opportunities to process information on her own and to respond to them in a dynamic (non-rote) way. There were no scripts or drills to make my child memorize and follow.
RDI(r) offers parents the progression of neurodevelopmental steps that the ABLLS, for us, was missing.
Five years ago, I thought losing our ABA program to circumstances beyond my control was the worst thing that could happen to our autism intervention. I was wrong. It turned out to be the best thing, because it gave me an opportunity to try something different and make some new discoveries about behavior and development and autism.
Saturday, July 18, 2009
My Crewmate Sheri has been blogging about her bag's chronicles here.
My poor bag is sitting by the phone, WAITING for a call from Sheri's bag when Sheri's bag returns home. She says she wants to let her pink handles down with a friend. She wants to see logo to logo, the album of pictures and hear the tales from Sheri's tote bag from that adventure.
Several weeks ago, a facebook quiz popped up into my feed. One of my friends had taken a quiz called, "How Retarded Are You?" I hid that particular quiz from my feed and zapped an impulsive message to my friend, explaining the inappropriateness of it.
Imagine my embarrassment to overhear my own child using the word among friends a couple of weekends ago. I came down on him hard, right then. Maybe too hard. (What was he thinking? I still don't know. And why didn't the peers stop him?)
This morning, my child reports to me that last night, after his twin sister came to the back of the dugout briefly to congratulate him for a great hit and a scored run, one of the players in the dugout asked my son which of his sisters did he think is more retarded.
These recent events have sparked some interesting discussion that continued this morning. My husband tried to explain that the boy last night may not have understood that we are more sensitive to the word than other families. My husband, in that moment, missed the point. (In all fairness to him, he and our son were trying to get out the door to another tournament game and were in a hurry. I hope they talked about it on their ride to the game.)
There is a mindset that people think it's okay to say the word retarded as long as you look around and make sure there's no one that might be offended. That's simply a wrong attitude.
The "R" word is like the "N" word. Inappropriate in any circumstance.
We're having more chats about it at our house. (Even families w/ members w/ disabilities deal with it.)
Here are a couple of web sites that offer more insight:
And a blog entry of mine:
Talk to your kids. Tell them to remove the "r" word from their vocabulary. Teach them to stand up to others who do, explaining the inappropriateness of the word.
Friday, July 17, 2009
Tuesday, July 14, 2009
Diary of a Mom ended a week spotlighting siblings with this information-filled post:
What Siblings Would Like Parents and Service Providers to Know
I have twice had the privilege to attend in person a conference with Sibling Support Network and SibShops founder Don Meyer. Meyer met with a small group of parents at a weekend long SibShops at a conference called, Relatively Speaking, held every other year in Grand Rapids, Michigan. Relatively Speaking may be the only conference of its kind, focusing totally on siblings of a child with an illness or disability. (Every state should sponsor a similar conference! The next Relatively Speaking conference is scheduled for October of 2009.)
Meyer reports about siblings that their questions and experience often closely parallel that of the parent. He says that when a child is diagnosed with a disability or an illness, one of the very first steps that happens is the parent is introduced to an other parent, sometimes individually, and often, in terms of a support group, where parents can find support and information from other parents who are already on the pathway. He said that siblings are almost NEVER given that same support, even though they have a parallel experience and questions similar to those of the parents.
Sometimes, we as parents and professionals forget that sibs are active participants in what happens in the family, too. SibShops is one answer to this issue of lack of support and policy for siblings of persons with illness or special needs. He said that siblings will have the longest relationship with the person with special needs over the course of the lifespan, and while we don't want to burden the sibs with too much responsibility and information at a young age, we need to support them appropriately.
He reported to us the experience of adult sibs whose parents never ever gave them information, never included them in much to do w/ the sibling or the special need, and then the aging parents became unable to care for the child w/ special needs, and the sib had a lot dumped on them suddenly, with no information and no support. Meyer says that there are a lot of adult sibs who suddenly find themselves on a learning curve about a disability, trying to play catch-up about medicaid, the disability itself, housing, services, etc etc etc, with literally no background, no clue as to the financial plans for their sib, no nothing.
According to Don Meyer and research on siblings, there are seven things we as parents and service providers need to provide to siblings of achild w/ special needs(from my notes):
1) AGE APPROPRIATE INFORMATION
2) OPPORTUNITIES TO MEET OTHER SIBS
3) BEST POSSIBLE COMMUNICATION WITH SIBLINGS. Meyer recommended taking an active listening course or to read the book "How to talk so your kids will listen and listen so your kids will talk" and he mentioned that there is now a version of this book out about communication w/ your teens.
4) CARVE TIME ONE ON ONE WITH YOUR TYPICALLY DEVELOPING CHILDREN. Meyer mentioned one mom who occasionally pulls sibs from school for anafternoon of walking around the lake, or having lunch together. He sayswe may have to become really creative, but we need to do this.
5) LEARN MORE ABOUT LIFE AS A SIB
6) REASSURE KIDS BY MAKING PLANS FOR THE FUTURE
7) AND KNOW: THE SINGLE STRONGEST SIB INTERPRETATION OF THE DISABILITY WILL BE THAT OF THE PARENTS
Check out the comprehensive Sibling Support Network web site, especially the "publications" link. One important link is "What Siblings Would Like Parents and Service Providers to Know". Also at the web site are links to find a SibShop near you and links to internet chat groups for sibs of different ages.
The folks who put together Relatively Speaking always bring actress Geri Jewell to speak to the parents. Jewell is an actress and I remember her as Blair's cousin Geri on the tv sitcom, "The Facts of Life". She's quite entertaining and funny, and she can be dead serious, too. She has the perspective of being THE person w/ the disability. (She has CP.) Jewell's presentation, for me, was eye opening. She talks about her experience growing up at school and at home, and she talks about the "industry" of show biz, and barriers that existed and came down there. The biggest idea I took away from Jewell's presentations is the importance of making sure the child with illness or disability has a role and responsibilities in the home. Make sure the child is an active participant. Contribution to the family responsibilites carries with it a lot of non-verbal meaning of value and with that, self esteem. We need to make sure *all* of our kids are active participants at home (and advocate for them in the community as well).
During one of the parent sessions at the Relatively Speaking conference four years ago, someone raised a question about an "angry" sib. I was sitting next to a family of a child diagnosed with diabetes. There were families dealing with physical disabilities (CP, for example), illness, autism, Down Syndrome etc etc etc. And the heads began nodding all over the room. If a family had at least two sibs, seems that one of the sibs took on the role of "good kid" and another took on the role of "angry kid". There was a huge sigh of relief in the room as we learned that we were not alone, and in fact, it seemed, anecdotally, quite common.
I have more notes to share:
I listened to a presentation on CD from the ASA national conference in Seattle a couple of years ago, from two women who researched sibling issues. Mary Jane Weiss and Lynn Stern Feiges said that they found that in most cases, there are a lot of misconceptions about autism, for example, siblings don't understand what autism IS combined with the misconception from the parents believe (mistakenly) that the sibs DO understand what autism is. Weiss and Feiges have written a book, Sibling Stories: Reflections on Life with a Brother or Sister on the Autism Spectrum, with excepts available here.
Sometimes, sibs have worries not articulated aloud. For example, some believe they might be able to catch the disability or disease, too. Or they think they might have to care for the sibling when the parents are too old to take care of them.
At Autism One several years ago, I attended a roundtable panel discussion regarding sibling issues, with a mom (Emily Iland) of adult and teen children, and with adult sibs (one, Anissa Ryland from Thoughtful House in Austin, is also a mom of an NT child and an ASD child). The sibs expressed a variety of emotions and memories, and talked about things their parents did right, and things the parents did wrong, and things they didn't understand fully until they were older. Life with a sib with a disability often seems UNFAIR to the sib, when the child with the "issues" gets more attention and "benefits" from Mom and Dad.
The theme from all of them is the same. They suggested making sure to have one-on-one time with the NT sibs, to work to develop and grow a talent (like acting/drama, for one on the panel) or hobby, and to make sure the sibs understand what the disability IS. And find someone who can be a caregiver to the child with special needs so you can have alone time with the other sibs. That seemed to be a big one from the sibs themselves...no one could take care of the child with special needs but MOM or MOM & DAD, and that meant they missed out on activities or sporting events that the sibs participated in.
Here are a bunch of books and articles about siblings:
My Brother Charlie
Rules by Cynthia Lord (fiction)
Being the Other One: Growing Up with a Brother or Sister Who Has Special Needs by Kate Strohm
Dan Coulter article, "Giving Siblings Their Due"
Dan Coulter article, "Brothers and Sisters and Asperger Syndrome"
"Where is the Compassion?" by sibling Kate Matlen
Autism Through A Sister's Eyes by Emily Hecht
"The Sibling Slam Book"
"Jessica's Little Sister" by Debi Tyree Haney is a picture/story book for children about introducing a sib w/ autism to folks at Sunday School
Siblings of Children With Autism by Sandra Harris
Time Magazine article, "The Sibling Problem"
Even still more resources are available at the Sibling Support Project Store
A list of sibling/parenting related books here
I hope this is helpful.
For information about Relatively Speaking, call 1 800 359 3722
Sunday, July 12, 2009
My son had some powerful hits! I'm so proud of him!
I managed to catch a pic of the ball in the air after my son hit it! ;)
Friday, July 10, 2009
One half of The Little Couple is the wife. Jen Arnold amazes me. She's a highly trained, highly specialized pediatrician. She has never let her height slow her down. She faces the same challenges day after day after day, and she chuckles her way through them with fun and grace.
I watch her and remind myself that I could learn a LOT from her positive attitude. (Do her challenges ever become too big, too loud, too heavy, too much, I wonder?)
I let my mind wander to the differences between the challenges she faces and the challenges individuals on the autism spectrum face and at why my attitude may be different from hers.
She is short by the world's standards. Very short. Three feet two inches tall short according to an internet search. Door handles, tables and chairs, countertops, cash registers, toilets, sinks, pedicure chairs are all designed for folks of average height.
And everywhere she goes, at least on the TV show, the average height people of the world seem happy to accomodate her challenges.
Removing the chair pad from the pedicure chair to lower her feet into the pedicure soak is not only a simple accommodation, but is easy for the average height world to figure out. Bringing her a booster seat at a salon for a hair cut or a restaurant for a meal is another easy accommodation.
What if she went to the salon and was spoken to harshly? "What's wrong with you? You're too short for our place! Didn't your mother feed you? Go home! Don't come back until you've grown a couple of feet!"
What? Make HER change something about HERself before she is allowed to join the rest of us??? The idea seems ridiculous.
But it happens -- maybe not to Jen Arnold and little people, but to individuals with developmental delays and invisible challenges.
Most autism families whom I know have multiple stories to tell about horrible experiences in public when a child on the autism spectrum has had a challenge in public. I've had strangers tell me to spank my child, suggest that I don't discipline her, stare during a meltdown but not offer to help in any way, you name it, I've experienced it.
A huge topic on internet discussion boards for parents of autistic children is autism-friendly businesses. Which local dentist "gets" autism? Which doctor? What restaurants? What churches? Does anyone routinely use visual programs or schedules? Which businesses have the "booster seats" for children like ours?
(Seems I wasn't the only one having a difficult day, yesterday. Read HERE, and HERE, and HERE and you'll see what I mean.)
Children with autism are excluded from general ed at school, are left out at church, are ignored on the playground. Instead of "bringing them a booster seat", society doesn't know what to do, and the answer seems to be to judge and blame the parents and sentence and punish the child. No one asks the question: Is there something we can do to create an environment where everyone can join us, where everyone has a role, where everyone can be an active participant? What "booster seats" do we need?
Clinics, organizations and non-profits spring up and provide programs for individuals w/ autism, but they mostly don't include the rest of the family.
Seems like it's always an "either/or" kind of thing with autism. We do activities with the NT sibs and leave the kid w/ autism out, or we do an autism activity and leave the rest of us out.
Where are the inclusive accommodations and programs for families who live with the challenges of invisible disabilities like autism? *shrug* I dunno.
Autism is not as obvious as dwarfism. Autism is just as real as dwarfism.
Accommodations for autism can sometimes be as simple as accommodations for a little person, but they are not as obvious as a booster seat at a restaurant for an adult who can't reach the table top.
But society tends to accommodate one and judge the other. And base the individuals's right to accomomodations on low effort and low cost.
And I am trying to get myself out of the frustrating funk of "what should be's" and back into the "what is's" and make the world a better place for all of us.
In the meantime, I want some of Jen Arnold's humor and grace to rub off on me. I just love to watch her! She's one of my new heroes.
Thursday, July 9, 2009
I'm in a frustrated funk.
My situation hasn't changed much, really. But, my attitude has.
I go through these times of frustrated funk, occasionally. They're normal, I think, for an autism mom.
Doesn't make them any easier.
A recent event ripped a scab from a wound that I thought had healed better, followed by other events that have rubbed salt in the fresh-again wound.
Too many reminders too close together of what autism stole sends me into a frustrated funk.
The absolute worst part of all of it is the "solitary confinement" of autism. Sitting with does not equal being a part of. Conversations around me are so much in another world that they may as well be in another language. In every social arena, from little boy baseball games to VBS to neighborhood fun, I am on the periphery, an outsider, with a priority different from the other adults, not actively participating with the adults, because my priority, my ministry, is a child on the autism spectrum. It's a priority that brings an isolation that other autism parents understand, but few others even recognize.
Lately, the "solitary confinement" has become too heavy, too loud, too much. It overshadows the huge progress we have made. And I am in a frustrated funk.
PS: I know where I need to go. I am listening to Steven Curtis Chapman's song, "Hiding Place" as I type.
Tuesday, July 7, 2009
A lot of folks who work with individuals on the autism spectrum emphasize eye contact for the sake of a behavior we label eye contact.
We shifted gears a few years ago when we began to learn that most of us don't simply make eye contact as a behavior observable from the outside. Nope. Instead, we reference. And we reference abstractions in situations where eye contact will not be meaningful, because the referencing involves mental engagement that exists beyond mere eye contact.
manipulative mode – working with real objects e.g. beans, cups, spoons
mental image mode – using mental images or pictures of real objects
abstract mode – using number concepts without thinking of images of objects
As adults, we reference abstractions all the time. Meanings. Connotations. We can interpret all kinds of information from one glance or facial expression, one sigh or smile in context with other information that we reference simultaneously. That kind of abstract referencing begins in infancy in the concrete.
Referencing's roots are in emotion sharing, between-baby-and-mom-back-and-forth moments.
Like concepts of math, referencing also begins in what could be described as a manipulative mode, with REAL objects, a teddy bear, a rattle, a noise or sound, some sort of concrete, tangible referent as a prototype, giving the baby experience with mom's reaction to this new object, experience that lays a foundation toward moving into mental image mode and later abstract mode.
Just because a child references you visually (manipulative mode) doesn't mean he/she is capable of referencing with mental image mode or abstract mode. Just what is in mom or dad's mind? Remember Dr Gutstein definition of communication? (I wrote about it here) "…as the desire to determine the relationship between what is in your mind and what is in my mind…". That's abstract mode.
Back to that web site (above) that describes Beechick's way of teaching math:"All children develop these modes of thinking in this same order. They can switch back to an earlier mode but cannot jump ahead until they have grasped the previous mode."
"Since young children are only able to use the manipulative mode, preschool math activities must use concrete objects to teach numeracy awareness."
"…the secret is to begin the child's arithmetic at a young age by using real objects. Then spend a year or two having the child do a lot of arithmetic in her head …finally begin working with abstract symbols."3 (Ruth Beechick, The Three R's)
Developmental approaches lean heavily on beginning in the concrete, remembering that children can move back to an earlier mode, but not forward until they have grasped the previous mode. Developmental approaches have parents and involved adults slowing their pace to allow the children to be active participants, offering the child opportunities for development to play out, watching for milestones to emerge and discoveries to be made.
Sometimes I forget to begin in the concrete, manipulative mode. I assume that I am understood, when I am not, because I'm too abstract. I'm a work in progress. Still learning. I'm glad there are folks along the way to teach me and to guide me.
Monday, July 6, 2009
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Wednesday, July 1, 2009
About a year ago, The Old Schoolhouse created a "crew" of 100 homeschooling families who were interested in using and reviewing products in order to blog about the products and spread the word about the products. Crew members were paired with vendors who signed on to participate in the program.
Last fall, on the Crew's maiden voyage, I was included as an alternate to the 100. Being an alternate meant I might not get to use or review anything. I did get quite a few items (see the sidebar of my blog for my reviews) and found that many of them are quite friendly to our remediation approach to the core deficits of autism, with "guided participation" as our priority.
Some of us were asked to stay on another year, and I am blessed to be included and on board again, this year as a "First Mate". This season's voyage begins TODAY and our first product is in the process of being delivered to Crew members. I received mine yesterday. (I'm more than a little bit excited!)
As a First Mate, I have the privilege of working closely with four new Crew members this year. Please meet
We haven't come up with a name for our "unit" or "group" or "team" yet.
Wendy and Tim and I have something else in common, besides the fact that we are Christians and we are homeschoolers. Wendy and Tim are also parents of a child who is diagnosed on the autism spectrum. (There are others on the Crew who happen to have children on the autism spectrum, too, and if you're one of "us" and are interested in what products work with the uniquenesses we tend to see in autism, stay tuned, because families like ours are represented again this year.)
Our first vendor is ready to begin, and so are we! Who is it? Allow me to introduce Grapevine Studies!
My daughter and I sat down last night in front our our big magnetic white board and began an introductory timeline for Esther. The materials are fun and they are a natural fit for guided participation. Stay tuned for a review after we've had a chance to use them for a while. This particular product is one I'll be using with all three children, and each child was interested in a different topic, so we have Esther, Birth of Jesus and Biblical Feasts and Holy Days.
We're off to an exciting beginning. The list of vendors is incredible. I look forward to serving you again this year, describing the ins and outs, positives and challenges of all the products that land on my front porch (or in my inbox).