Sunday, December 27, 2009

The In-Group

When my son was first diagnosed with an Autism Spectrum Disorder (later Asperger's) in 2000, I was devastated.  I remember being in the shower the next day and falling to my knees, sobbing, thinking that this beautiful, smart 3-year-old was never going to love, get married, have a family...  What was there for him?  A world of never understanding others, of aloneness.  I think I might have even journaled reams for several days.  Not too long after that, I came to a realization:  He was the same kid on September 14th, 2000, as he was on September 13th, 2000.  But now we were armed with the name of the road we had to walk.  And so began the journey...

The above isn't the point today.  Today the point is what developed in one area of my life:  friendships.  I don't really make friends easily or quickly -- I'm much more of a tortoise -- and my list of friends has always been small.  Having moved to a place near none of my friends, having no job anymore, and having no such thing as Facebook, I lost contact with most of my friends.  Taking care of a child with an ASD is very time consuming and stress inducing even without caring for his toddler sister.  Autism is so very different from most other disabilities.  Parenting is so very different.  Sleeping is so very different.  Meal planning is so very different.  Schooling is so very different.  Therapies are so very different.  It isn't called a pervasive developmental disorder for nothing:  There is no part of his life, or ours, left unaffected by his autism.

About a year into the diagnosis, a local parent of another child with an ASD put out an ad to start a support group.  This was a pool of people, all mothers, who understood what it meant to be the mother of a child with Autism, the stress, the interrupted sleep, the battles with school, the battles with insurance.  Looking at other children the same age and grieving that he'll never be like that.  We didn't need to explain why we had to hang up the phone; it was enough to say, "Gotta go -- Bye!"  We never said to each other, "Let me have him for two weeks.  I'll make him straighten up and fly right."  And no one would think to say, "He'll eat it if he's hungry enough."

Behold my new friends!  How could anyone else understand what I was going through?  What it was like to have a child with Autism.  The broken dreams.  The grim future.  The heartbreak.  The fights with school.  These people never said to me, "God gives special children to special people."  Or, "Was it something you did when you were pregnant?"  Or, "I don't know how you do it.  I couldn't do it."  (FYI:  You do it because you have no choice.  You can't cure them, and you can't give them back.)  When the elementary school principal called me to tell me that my son was running around her office and spitting on her, these people applauded the accomplishment of his spitting right along with me -- if he could now spit -- a heretofore unmastered skill --  he could have toothpaste on his toothbrush!  Oh, happy day!

My son is 12 now.  He's doing reasonably well.  (There's a lot to be said for better living through chemistry.)  He's in a program that, though not fully appropriate for him, is the least inappropriate that the school system has available.  We still have battles with school and insurance.  We still have battles with my son.  And I would never wish puberty on anyone.  But all in all, today, he's doing reasonably well.

He's doing so well that last year I took on my daughter's Girl Scout troop.  I love Girl Scouts.  I was never one as a child, but I think it's a phenomenal organization.  I also volunteer with AWANA.  And you know what?  I found that I could find friends among mothers of neurotypical children, too.  My world doesn't have to consist of the world of Special Education.  While I'll probably always be involved in the ASD Support Group of SoMD, I just don't feel like being an officer of the Citizens' Advisory Committee for Special Education and sitting on the board of the local Learning Disabilities Association and, and, and...  I'd like to get on with life.

So why am I talking about this now?  Well, it's because of my dear friend who is now a member of the baby-loss group.   I look back to that paragraph above, How could anyone else know what I was going through?  I know that parents in the baby-loss group will be my friend's new set of friends.  Everything that happens will be measured against the life of her son, the life not lived, and that group of people will understand every emotion that grips her, every tear that she sheds, every milestone not met, the heartbreak of every holiday and birthday with an empty place at the table.

I'm not a member of that group, and I can't compare my situation to hers, but I can understand surrounding yourself with the In-Group.  I so want to comfort my friend.  Will she let me?  I'll just make sure that I stick around just in case...

Friday, December 25, 2009

A Letter to My Dear Friend

My heart is so full for my friend whose beautiful, much-anticipated, much-loved son is now an angel in heaven. I have so many things to say to her that I'm full to bursting, but they're about me, not her, and now is just not the time... So here's a "letter" to my dear friend...

Dear L--,

I knew from the first time I saw your million-watt smile at my Natalie's Open House that you were going to make her year. It's so nice to be right. You took care of her, saw to her considerable needs, and along the way, you became my friend. I think you've never met a stranger, but to me, this is no trivial matter.

Becoming a mother has been so important to you. I remember walking past your door one day to find you beaming through tears at the "feeling" you had that your daughter was that day now in the world and would soon be with you and J. I felt your frustration and saw your heartbreak as the international adoption situation caused you to close that door.

I witnessed your walking a new path to your family. You chronicled the IVF procedure along with your hopes and shared with us the miracle of M's conception and growth from your "little jelly bean" to the fully developed, yawning, breathing, kicking, squirming, "stubborn monkey" inside you.

When you went into the hospital, the good wishes poured in. J. kept us all updated on your status. We all waited to hear, "He's here!!" I never once anticipated that the words would be, "[L] needs your prayers....emergency c-section and M[--] flown to GW NICU...he is fighting for his life. Here's where I pray stubborn will make a life's difference." Natalie and I prayed. I prayed again and again. In the morning, I expected to read that he had passed the crisis, whatever it was -- I thought it must be his kidney issue. Instead, I read, "[L]'s little boy passed away early this morning." My devastation, though nothing to yours, brought me sobbing to my knees.

I knew that you needed to be alone for awhile, and I felt helpless to do anything for you. So I checked in on FB, and I watched your blog. I felt sure that you, a public journaler, would need to write it out. Sure enough, your "Goodbye my angel" letter to M. appeared, and you touched us all with your love and your sorrow. You then gave us something tangible to do with your "Thank you friends" post: We were able to donate to help the children in Kyrgyzstan with an EKG machine and to fund the Now I Lay Me Down to Sleep foundation's mission. And you gave us M's pictures -- all the beautiful photos of him outside the womb, fighting for his life or resting in his father's arms. I look at them often; I find myself stroking the screen. They will be cherished.

The funeral service was a beautiful tribute to a beautiful soul, a soul created by two loving hearts and God's miracle. So many people were there to support you and J. and your family. That your aunt read your Goodbye letter was a fitting tribute to the power of your words and to your ability to love and to share yourself.

You loved M. fiercely. You allowed us to love him, too.

Now I think about you almost constantly; I grieve for your son, but more, I grieve for your grieving. I read your blog and cry and pray. I have "conversations" with you all the time, trying to help, trying to hold you up to the Lord. I want to be able to offer you comfort, but there is no comfort that I can give for this pain, these expectations not met.

Natalie and I bought M. a Christmas ornament on the day you went into the hospital for the induction. We searched through the Christmas store in the mall and found the perfect one -- a little blue "sock monkey" wearing a Santa hat. A monkey for L's monkey, I thought. I have it on the tree now, and I smile and I feel sad every time I walk by it. And I think, "How much more does L. feel, she who had all his Christmas shopping done weeks before he was born, she who had such plans, hopes and dreams for him." And I grieve for your grieving.

Your "New Normal" is a horrific thing, but I can't rant and rave and shake my fist at the fates. It only makes me more upset, and it does no good. So I pray and I search for comfort, for you and for me. While I don't understand God's plan and don't pretend to, I have found solace in this: "For the Lord does not abandon anyone forever. Though he brings grief, he also shows compassion according to the greatness of his unfailing love." (Lamentations 3:31-32) Brave words for someone who hasn't lost a child, aren't they? But they aren't my words, they're God's.

Oh, L., I believe in my heart of hearts that you will hold M. in your arms again in Heaven. It saddens me that it won't be before then, but I believe it will happen. I believe in my heart of hearts that you will have more children in your family to join the cherished memory of your first-born son. And I believe in my heart of hearts that God is a loving God even when I don't understand.

With love and prayers ongoing,
Terri

Sunday, August 9, 2009

It's Never Too Early

There are still two weeks until the start of school. I have mixed feelings about this. On the one hand, I very much want my house back -- to be able to clean, sort, organize, store and not have the chaos reappear instantly; to not have to answer questions or get someone something right now because they've forgotten how to delay gratification; to have some down time without having to orchestrate it first. On the other hand, with only two weeks left, I've heard nothing from the school team to set up all that needs to be ready for the first day of school for my son. (I have some angst for my daughter as she starts a new program in a new school this year, but she doesn't have her brother's issues (only her own) that require an IEP.)

But what's really sticking out on my "What Has to Happen in the Upcoming School Year" list -- making me want to postpone the start of school for a couple of years -- is my son's Science Fair project. A child's Science Fair project assumes nightmare proportions to parents, increasing exponentially as it gets closer to "D-Day." D for Display Day. D for Defense Day. D for Desperation Day.

My son already has a good idea of what he wants to do this year -- something to do with wind energy -- so we're a fair step ahead of last year. All to the good. And all because we started talking about it the day we schlepped home from last year's Science Fair. However, his project is on a topic neither his dad nor I know anything about. While we can see which way the wind blows, run like the wind, or bow before the winds of change, we don't know how to build a windmill, collect and store the energy, measure the energy collected, or transfer the energy to make it available for use.

Perhaps the answers are blowin' in the wind.

Friday, August 7, 2009

Happy Birthday, but only after you finish your homework

My son's birthday is later this month. He'll be turning 12. This is an amazing thing from my perspective -- my oldest child is turning 12 and is going into 7th grade. Holy cow!

As you might expect, his birthday wishes have changed quite a bit over the years. No more Thomas the Tank Engine, no more Legos, no more Bionicles, no more Pokemon cards. What has the boy wanted the past few birthdays and Christmases? Video games -- and unlimited time to play them. Over time, we bought him a couple of systems and a fair number of games.

I'm sure you can imagine my son's distress when the PS2 died without possibility of resuscitation some weeks ago. (We had brought it back to life once before with Q-Tips and alcohol, but no such luck this time around.) It gives new meaning to "weeping and gnashing of teeth"! Unbeknownst to him, we decided that we'd upgrade his PS2 to a PS3 for his birthday.

Remember I said that his birthday is later this month? So is the start of school. No matter how you look at it, it just isn't fair to give a kid a new gaming system and/or game and tell him that he can't play it because he has to go to school. And given that he has OCD characteristics and "OCs" over a new game for days, even weeks, the first time he plays it, it's very unfair.

Another factor in the equation is that he has summer math homework. It's not hard -- just review from 6th-grade Pre-Algebra. And he's allowed to use resources, including parents, for questions he might not have learned or doesn't remember. But there are 149 questions.
He'd rather do just about anything than his homework, so it's been a bit of a struggle to get him to finish. At our insistence and with much grumbling, apparently on both sides, he's worked on them all summer. He has maybe 25 more to go.

We brought home the PS3 yesterday, and now it's the carrot for getting those 25 problems done. Is it cruel or very clever of us to say,


"Happy Birthday, son,
but only after you finish your homework!"




That little jingle...

I've been sitting here for the past half hour tapping along to the music from my son's Pokemon game. He's not even playing it; he left it on his seat as he went to the other room to eat his lunch. As we're both watching MSNBC, it's an unlikely juxtaposition. I must say that trying to keep the happy la-la feeling of the Pokemon music is quite difficult when watching Max Pappas from FreedomWorks spin his group's call to rowdy behavior at town hall meetings to be something that promotes the nation's health care interests. Bad behavior is bad behavior.

Wednesday, July 29, 2009

2e but 1st GT

It has been my experience that our school system has a major flaw in how it treats children who are twice exceptional -- gifted with some kind of disability such as Asperger's Syndrome or a learning disability. We've spent nine years doing battle with the Department of Special Education trying to get the Asperger's side of my son's issues dealt with appropriately. However, the Department of Gifted Instruction has been as unwilling/unable to program for such children as the Special Education Department has been.

But it starts at a more basic level: consistent programming for highly abled students in our elementary schools. I believe that administration does not perceive highly able students as being in need when in fact such children are at risk. If we determine to reach this group of at-risk students, we first have to dispel the myths and prejudices that surround them.


Possibly the biggest myth is that this is not an at-risk population. Many educators and general members of the community believe that highly abled learners are just fine on their own, that they already have so much, what more do they need? However, if learning is “forward progress from what you know to what you don’t yet know” (Winebrenner, p. 4), then those
most at risk of learning the least this year are the most abled learners. There is simply less new information presented to them than to any other group.

Imagine the child who enters the new school year already knowing 75% or more of the the math curriculum for that grade as based on beginning-of-the-year testing. She must sit and listen to all the lessons on concepts she has already mastered. She must complete the work and take the tests on information she has already demonstrated she knows. She might be exposed to some new information -- the 25% that she didn't know as of September -- but she is not making a year's worth of progress in a year. As our schools scramble to demonstrate Adequate Yearly Progress (AYP), the needs of less abled students are identified and addressed through remediation, mentoring, whatever it takes -- as they should be. If a less abled student were making only a quarter of a year's progress in a year, resources would be made available. Not so for the highly abled learner; her test scores do not negatively impact AYP -- she is doing
just fine on her own -- she doesn't need anything.

Another point showing that highly abled students are indeed an at-risk population is the research that uncovers that 25-50% of highly abled students’ time is spent waiting for other students to catch up (Webb, p. 13). How many parents could paper their walls with the drawings on the backs of their children’s worksheets, drawings completed while other students finished their assignments? Even the excellent activity of reading after completing an assignment is still time spent waiting. And when highly abled students are presented with
new information, they learn it quickly yet still must wait for their classmates to master it. One child routinely expressed her frustration, noting, "I understood it the first time [the teacher] said it; I didn't need to hear it over and over again."

Just as significantly, current research supports that highly abled students frequently lose self-esteem, lose motivation to learn, or opt to act less capable (“dumb down”). (This can be especially true for girls who are highly abled learners.) How frustrating is it to educators and to parents to see highly abled students become underachievers? Many highly abled students simply don’t reach their potential. Why should they? They can "get by" with minimum effort.


Another prejudice is that providing appropriate instruction for highly abled learners is somehow elitist. We have new accountability for many groups of at-risk students based on socioeconomic or cultural factors or academic performance. After school programs and mentoring programs, for example, are in place, and teachers automatically or because required adjust amount of work, pacing, amount of time for completion of work, content, teaching styles, options for expression of material learned, topics of interest, peer interactions, and level of knowledge about the learner to reach recognized at-risk students (Winebrenner, pp.2-3). However, “the level, pacing, amount, and type of learning activities that benefit average learners are as inappropriate for [highly abled students] as they are for students who are working ... below grade-level expectations” (Winebrenner, p. 3), yet the latter group receives attention without guilt. Highly abled students are as at risk as other groups; it is not elitist to see to their needs, nor is it unfair to other groups of students in the classroom.


Other myths also exist. One is that students who receive Special Education services cannot be highly abled learners. As the parent of one such student, I certainly can tell you that this profile exists. What danger to the student is there when his special needs mask his high cognitive abilities or vice versa, causing only one side of him to be seen, or causing him to appear "average" when in fact he is not. What danger is there, too, when staff acts on the belief that being highly abled means having to be perfect; since learning differences or another type of disability exists, this student
cannot be gifted. Another myth is that Reading and Math are the only areas that need to be addressed, or that splitting parts of Reading and Math into abilities-based groupings is sufficient. If a student is highly abled, she may be quite capable of doing higher levels of work in Science or Social Studies. She may also be capable of doing more than what is presented to her in the "above grade level" Reading or Math group. Yet another myth is that highly abled students’ needs can be met with more work, extra “jobs,” or being peer tutors. A student who has mastered the teaching point does not need to practice it again, stifling motivation. A student who has finished her work is not enriched by doing the lunch count. A highly abled student who is tasked with peer tutoring postpones his own opportunities to learn.

Once educators accept that highly abled learners do indeed need appropriate programming, such programming must be implemented in a thoughtful, meaningful, purposeful way. It is not enough to throw a handful of enrichment opportunities at some students, nor is it enough to provide some materials without integrating them into the mandated curriculum. It is also not useful to deny highly abled learners such resources as mentors or after-school programs simply because of their high cognitive abilities; as already discussed, they are at risk, too, and also need these resources.


The Department of Curriculum and Instruction in our school district distributed a brochure that categorized what our elementary schools already have in existence for highly abled students during the past school year. Programs exist. However, in actuality, programs for highly abled learners in our elementary schools are not consistently implemented. Some schools access them; some don't. Some teachers access them; some don't. Additionally, the implication is that these programs have an integrated place within the curriculum, yet to date evidence of such has not been seen. And while the brochure categorizes what the school system already has in place, by extension, it also shows what the school system
doesn’t have to program for this population. An additional point is that if elementary classes are to continue to be mixed ability classes, then general education teachers need training for identifying and appropriately working with highly abled learners. In our school system, it is not until middle school (with Honors Reading and Math plus one limited seating GT program) and high school (with AP classes and three new limited seating GT programs) that our students can access courses with appropriate rigor, with the exception of the elementary STEM Academy, which serves only 48 students per 4th and 5th grades each. Consistent, integrated programming is not in place in our elementary schools. (Note: middle school Honors Reading and Math courses are not enough either, nor is relying on AP classes for GT programming.)

Our school system has multiple programs in existence for other identified at-risk groups. Many students have been assigned mentors, and a new mentoring program was rolled out last year with plans to reach more students in the future; identified students participate in pull-out programs; and other after school programs are in place. Highly abled elementary students need similar programs but are typically denied access to them. Our school system also has staff and administration experienced in working with highly abled students, in working with highly abled students with special needs, or in meeting the needs of other identified at-risk groups. A purposeful, meaningful plan must be implemented to bring these people together to work for
all students in need. All the resources that we already have in existence need to be used, and used consistently, to reach at-risk, highly abled learners, giving them appropriate rigor and interventions now, before we lose them.

Resources


Webb, James T., Elizabeth Meckstroth, & Stephanie S. Tolan. Guiding the Gifted Child: A Practical Source for Parents and Teachers (2005). Gifted Psychology Press, Scottsdale, AZ.


Winebrenner, Susan. Teaching Gifted Kids in the Regular Classroom: Strategies and Techniques Every Teacher Can Use to Meet the Academic Needs of the Gifted and Talented (2001). Free Spirit Publishing, Inc., Minneapolis, MN.

Tuesday, July 28, 2009

Rawhide

Rawhide
Frankie Lane

Keep rollin', rollin', rollin',

Though the streams are swollen,

Keep them dogies rollin', rawhide.

Through rain and wind and weather,

Hell bent for leather,

Wishin' my gal was by my side.

All the things I'm missin',

Good vittles, love, and kissin',

Are waiting at the end of my ride.


Move 'em out, head 'em up,

Head 'em up, move 'em on.

Move 'em out, head 'em up:

Rawhide.

Cut 'em out, ride 'em in,

Ride 'em in, cut 'em out,

Cut 'em out, ride 'em in:

Rawhide!

Hah! Hah!


Movin', movin', movin',

Though they're disapprovin',

Keep them dogies movin', rawhide.

Don't try to understand 'em,

Just rope an' throw an' brand 'em.

Soon we'll be living high and wide.

My heart's calculatin',

My true love will be waitin':

Waitin' at the end of my ride.


Move 'em out, head 'em up,

Head 'em up, move 'em on.

Move 'em out, head 'em up:

Rawhide.

Cut 'em out, ride 'em in,

Ride 'em in, cut 'em out,

Cut 'em out, ride 'em in:

Rawhide!


It has just been one of those days: This kid goes here, that kid goes there, get Kid #2, go there, get Kid #1, go to place #4, bring snacks and games. They're only 9 and 11. And there are still 29 more days until the start of school. So as I continue with our summer plans, "
Will my true love be waitin', waitin' at the end of my ride?"





Saturday, July 25, 2009

Sweet Giddiness

My niece and her fiance are visiting for the weekend. She just got engaged -- gorgeous diamond big enough to poke out an eye -- and is planning their wedding for January. She's so full of sweet giddiness. It takes me back to the time, over 20 years ago, when I was in a similar situation, when my then-boyfriend proposed and pulled out an eye-poking solitaire to slip on my ring finger. Sweet giddiness.

Then the confabs with friends, purchasing every bridal magazine on the racks, the oh-my-gosh-I'm-supposed-to-be-doing-such-and-such-nine-months-before-the-wedding panic, pausing every few minutes to admire the ring, big, loopy grins, imagining possible honeymoon destinations -- such fun!

So here's to my niece and her fiance: May they have sweet giddiness all the way up through the wedding, and may they have as much after the wedding as before.

The other night...

The other night I had a meeting to go to -- a Special Education Citizens' Advisory Committee meeting at the local level. (I'm co-Vice Chair this year after two years of being Vice Chair.) I don't mind the meetings, the position, or the work, but I do mind evening meetings. I don't have a day job -- heck, I don't have any paying job -- so I have lots more free time while my kids are at school. Anyway, not the point. The meeting went well; 14 people were in attendance, which is a phenomenal number for a summer meeting. Of course, six of them were officers, but eight weren't, so still a phenomenal number in my book! What I still find interesting is that 10 of the 14 are parents of children with an Autism Spectrum Disorder (ASD). This percentage is down from last month, when nine of 10 attendees were parents of children with ASDs but is in keeping with the percentages over the past 2-3 years. Surely there's some meaning there! Why would so many people from this group join the CAC if they felt that their children's educational needs were being met? They wouldn't. Therefore, we have to say that this group is so disproportionately represented because the educational needs of children with ASDs in this county are not being met.

Our Board of Education and Superintendent are very, very fond of saying that we're moving from good to great (and sometimes from great to excellent!). I have to say that you have to get to good before you can get to great, and we have some serious work to do to get to good in our Department of Special Education and in our Department of Gifted Instruction.

Sunday, July 19, 2009

Autism and Discipline?

I run a support group for parents/caregivers of children with Autism Spectrum Disorders (ASDs). We maintain a listserv, and one day the topic of disciplining our kids came up. ASDs are so very different from other disabilities, and discipline strategies that have been successful for generations just don't work. We need to discipline our kids in ways they understand, that will reach them. To discipline them in ways that we are comfortable with *but which don't work* is a disservice to them and to ourselves as it sets us all up to fail. People with ASDs don't start the day by saying, "Today I'm going to be willfully defiant and non-compliant." They have a *neurological* disorder that causes them to behave in ways quite different from what society expects and accepts. In response to some posts on our listserv, I replied with some of the strategies our doctor at Children's National Medical Center taught me. That list was later edited for a workshop in a neighboring county. I'm putting it on on my blog today because I need to remind myself that even though my son is older now, I still need to implement some of these strategies when dealing with his pre-teen yuck.

PARENTING STRATEGIES FOR YOUNG CHILDREN WITH AUTISM SPECTRUM DISORDERS


Distract/Redirect --
Do not focus on the negative behavior but instead distract the child from the unwanted behavior and/or redirect him to the wanted behavior. Focusing on the negative behavior makes it about the behavior, not about stopping it. You might want to state the rule, saying, for example "We don't hit our brother," as you distract him. Additionally, you could give your child something to do that is incompatible with the unwanted behavior. For example, if he is using his hands in the negative behavior, you can introduce an alternate activity that uses his hands, such as drawing, coloring, or doing a puzzle.


No Time-Outs --
For a kid with an ASD, what's better than getting to escape from everyone/everything? Part of the purpose of time-outs is to think about one’s behavior. For a child with an ASD, and certainly for a young child with an ASD, thinking about the negative behavior that got her sent to a time out isn't on her agenda. For the child with an ASD, getting back from the time-out can become the focus rather than thinking about the behavior. Most children with ASDs lack theory of mind -- the ability to put themselves in someone else's shoes -- so they usually find it difficult to see that what they're doing has an effect on someone/thing else. ("I'm having fun sitting on my sister’s head, but it doesn't hurt me. It's fun! Why should I stop?") Related, without theory of mind and with limited social understanding, "the Golden Rule" is rarely effective. ("No, I wouldn't like it if someone sat on my head. I'm having fun sitting on her head. La la la la la...")


Teach Knowledge/Skills --
So does your child "get away with" bad behavior? By Neurotypical (NT) standards, maybe, but he hasn’t learned what he needs to know to be held to NT standards. The plan is to distract or redirect him at the time of the incident, but at quiet times, when he is open to learning, teach him what he needs to know in order to succeed. Give him the knowledge, the tools, and the practice to get those wanted behaviors to generalize to the real world. Try to structure your child’s environment/schedule to avoid difficult areas until he is ready -- or until you are ready to make it a teaching point!


Reward --
Reward your child for wanted/positive behaviors. Parents and caregivers of neurotypical children may not understand why they see you reward your child for behaviors that they feel should be “just good behavior that happens.” Many kids with ASDs have no internal motivation system; they don't do things because they're the right thing to do or to please their parents. They need an external reason to do positives. (Please note that rewarding for positives is not the same as taking away when they do something wrong. The "punishment" is not getting the reward.) Over time, the reward fades, and they do the behavior without the reward. (There's a lot more to the process, but this is the idea.)


Consequences --
This is perhaps one of the biggest and most controversial problem areas in parenting/discipline. Neurotypical parenting and school discipline systems say that our kids get consequences. Often, a child with an ASD can tell you what a consequence is but can’t apply that consequence to herself in the heat of the moment. Applying a consequence won’t be an effective tool until a child with an ASD is developmentally ready. To be developmentally ready, your child will need time and teaching. When your child begins to understand consequences, consequences will need to be slowly added to your discipline system as your child is ready. It may take until adolescence for your child to begin to understand consequences.


Praise --
While doing the above, a parent’s job is to also pair wanted/positive behaviors with praise. Kids on the Autism Spectrum don't usually work for social motivators, but we want them to learn to do so. We have to show them that praise is good by explicitly connecting it to tangibles and good behavior. Eventually, your child should work for praise, not the tangibles. Maybe one day he will even do it because it's the right thing to do whether he gets praise or not!


Low and Slow --
When talking to your child, practice "low and slow": Keep your voice pitched low, and keep your speed of talking down. When we get stressed, our voices naturally become more high-pitched, and we usually talk much more quickly. If you talk with tones or rates that are fast or high-pitched, your child can lose the message in the emotion. "Low and slow" will ensure that your message is more likely to reach your child.


Choices --
Another strategy is to offer our kids choices, lots and lots of choices. However, the choices should all be things that we will accept as outcomes. If he or she has to take a nap, it's "Which blanket do you want today, the yellow one or the blue one?" She has to take a nap; not taking a nap isn't one of the choices.


Schedules --
Because many kids with ASDs lack an internal center of control, they look to the outside world for structure. Use of a schedule will provide your child with the structure that he can’t impose on himself. The eventual goal is to get the schedule to be socially acceptable, so we move from picture schedules to lists to a Day Runner or a PDA. Again, there's a lot more to this concept.


In closing, the discipline you apply to your child with an ASD is not the same as the discipline you would apply to a neurotypical child. It is a discipline system -- it just won't look like theirs. Yes, the "real world" isn't like this, and your child will have to function in the real world. But your child has social, pragmatic, and executive functioning issues. You have to teach him what he needs to know in ways that he can understand. Then he can function in the real world - whatever that might be.

Definitions of Grace, part 3

Noun
3. (also grace period) a period officially allowed for payment of a sum due or for compliance with a law or condition, esp. an extended period granted as a special favor

I've been grateful for this a time or two...

4. a short prayer of thanks said before or after a meal

We always said grace before dinner when I was growing up. And my grandfather always said *the longest* graces before holiday meals. Well, being a bit odd, he didn't talk much usually. Or maybe he talked a fair amount, but people didn't hang around to listen. I know I dutifully sat through the "Zero" presentation -- I remember only that he submitted it to National Geographic -- and tried thereafter not to be the only person in the room with him. Not kind in retrospect, only self-preserving. Maybe he figured since he had a captive (hungry) audience at grace-saying time, he'd take advantage of it for a few minutes. He always included using this food for our spiritual, mental, and physical well-being. In my teenage snarkiness, I remember shouting a silent "Amen" over the "mental" part of that.

Now that I've got my own family, grace is said way more haphazardly than I like, except by my 9-year-old, who bows her head, folds her hands, and says grace to herself before every meal, including snacks. My 11-year-old says it if and because we make him but views it as a waste of good eating time. Or rather, not that it's a waste, but that it *postpones* eating by a vital five seconds. Literally. (Try it: "Bless us, O Lord, and these Thy gifts which we are about to receive from Thy bounty through Christ our Lord. Amen.") Maybe we should move grace to *after* the meal?!


5. (His, Her, or Your Grace) used as forms of description or address for a duke, duchess, or archbishop

I'm American. And Protestant. Often non-denominational. No. 5 does not apply.

Saturday, July 18, 2009

Definitions of Grace, cont.

Noun
2. (in Christian belief) the free and unmerited favor of God as manifested in the salvation of sinners and the bestowal of blessings; a divinely given talent or blessing; the condition or fact of being favored by someone

How cool is 2a? All I have to do is believe it. And what's really fun is being a Handbook leader in the Sparks Club of our local AWANA. During Handbook time, Sparkies (K-2nd grade) memorize and recite Bible verses, learning more and more about God and his favor. I *love* the sections in the AWANA Hiker Handbook that show Sparkies that "the Bible is a map from God [telling] us the way to heaven and what to do along the way." (p.14)

  • Sin is disobeying God's Word, and everyone has sinned. Romans 3:23 For all have sinned and fall short of the glory of God.
  • According to the Bible, God's punishment for our sin is: 1) We are separated from God forever. 2 Thessalonians 1:9 ...will be punished with everlasting destruction and shut out from the presence of the Lord... 2) Our bodies die. Romans 6:23 For the wages of sin is death, but the gift of God is eternal life in Christ Jesus our Lord.
  • Being good most of the time won't make God forget my sin. James 2:10 For whoever keeps the whole law and yet stumbles at just one point is guilty of breaking all of it. And being good all the time won't make God forget my sin. Titus 3:5 He saved us, not because of righteous things we had done, but because of His mercy...
  • Jesus took the punishment for our sin by dying on the cross for us. 1 Peter 2:24 He Himself bore our sins in His body on the tree...
  • We can be saved from the punishment for our sin by believing that Jesus Christ took our punishment when He died in our place on the cross. 1 Corinthians 15:3-4 ... Christ died for our sins according to the Scriptures, That He was buried, that He was raised on the third day according to the Scriptures. Acts 16:31 ..."Believe in the Lord Jesus, and you will be saved..." John 3:36 Whoever believes in the Son has eternal life, but whoever rejects the Son will not see life... (AWANA Hiker Handbook, 2004. pp. 16-20)
That progression is an amazing thing: We all sin --> We're all punished for our sin --> We can't make God forget about our sin --> Jesus died for our sin --> If we believe that Jesus died for our sin, we don't have to be punished. The free and unmerited favor of God.

In some people, the "talent" of Definition 2b is obvious. Artists, musicians, athletes, scientists, people of outstanding courage all come to our attention daily. Less tangible or visible talents also abound. Walter Cronkite passed away a few days ago. His trustworthiness is being proclaimed far and wide. In other people, talents can be hard to recognize, I think. A few years ago, our church called for parishoners to consider their talents for volunteering within the church. The pastor pointed out that talents could include being good with numbers or with repairs or with children. That got me to thinking: Just what is my talent? I can easily see all the things that I'm NOT: musical, artistic (How I lament this lack!), brave, athletic, etc. But I don't want to define my life by what I'm not. (Had enough of that with my in-laws, thanks! NOT Catholic, NOT Irish, NOT thin, NOT frugal.) I want to define my life by what I am (in those days of family judgment, AM Christian, AM American, AM comfortable with myself, AM living within my means!), which circles me back to the question of what my talent is.

I'm (apparently annoyingly) organized. This, I think, comes from the Asperger's trait in me that craves structure, but for whatever reason, I break things down into their component parts and organize them accordingly. I can listen. I'm listed as first contact person for the Autism Spectrum Support Group in our county and take a lot of calls. Some people just want to know when the next meeting is, but some want to vent and some desperately need a person to hear their concerns. And despite the fact that I no longer pull in a paycheck, I know I can teach -- doesn't really matter what though it used to be English As a Second Language (ESL). My friend once said that a good teacher can teach from the phone book. I expect she's right; I've thought of many a lesson I could teach from it.

I heard Joel Osteen once talking about putting on God's crown of favor because He *wants* to give me His many blessings. "When you choose to receive and acknowledge His blessings by faith, you open the door for His bounty, His supernatural blessing to overwhelm you in every area of your life!" Joel Osteen, 7/8/09 *Remembering* to think this way takes some effort, but what another pretty cool blessing.

Friday, July 17, 2009

Giving this Grace thing a try...

I thought and thought about what to call this blog. Since creating a blog was quite the surprise item in my day -- I only wanted to comment on a friend's blog post and got caught up in the mandatory login procedure -- I had no handy, clever name in mind. However, one thing I want so much is grace, in all its forms. And since it was my grandmother's middle name, Grace seemed the appropriate title.

My dashboard dictionary gives definitions of grace.


Noun
1. simple elegance or refinement of movement; courteous goodwill; (graces) an attractively polite manner of behaving

I've got to say that No. 1a is NOT who or what I am. I come in on the flat-footed, klutzy side of the gene pool. I don't sit like a lady. I don't move through a crowd like a queen. I don't do the Hokey Pokey well, and with that, someone is *telling* me what to do. (Put your right hand in, put your right hand out...) I even broke a bone in P.E. going over the uneven parallel bars. I think of all the Hollywood images of graceful people. (Audrey Hepburn and Julie Andrews top my list there.) I remember the people I've met who move with seemingly effortless grace. (Holly, who moved through the office with elegance; Tracie, whose carriage is the epitome of grace; the neighbor boy who displays jaw-dropping athletic grace at such a young age.) I can wish, but I don't think there's a whole lot I can do about this lack in myself; it seems to be an innate characteristic that I don't possess.

However, I'm working really hard on showing 1b and 1c -- not just because you catch more flies with honey than vinegar but because it's what I hope to find in others.
It's hard to advocate for your children when you're steam rollered or stared down or ignored, however politely. It's just as hard to advocate for your children when you yourself are confrontational, dismissive, or snotty. A little bit of grace would go a long way in a lot of situations, on both sides of the table. I'm usually involved in school situations, but just the other day, I watched Rachel Maddow embody "grace" in an interview with someone who vented bilious prejudice to the nation. She displayed true grace under fire.