Gentle Christmas - a "Just a LiL Blog" Post

photo courtesy of www.BloggingLily.blogspot.com

"Gentle Christmas" is part of the Through the Looking Glass series (guest post)

I discovered Jim's blog,  "Just a Lil Blog," a few months ago and from the first post I read - I was hooked.  Jim has made me laugh and cry, his voice is honest and poignant. 


His blog header says it all: The true life adventures of a little girl with autism, and her struggles raising her two parents with only a big sister to help her.  

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Lily sees “Rockin’ Santa” on the hearth the morning after we decorated the Family Room.  She wanders over to pick him up, saying, “Santa Claus”, clearly. 

We smile and I ask her, “Do you want me to turn him on?”

Maybe we’ve learned our lesson from all of Lily’s adventures with other animatronic decorations.  She’ll be fascinated with him, no, obsessed with him, for a day or two before losing interest.  I thumb the switch on and adjust the potentiometer dial to a higher volume.  “Rockin’ Around the Christmas Tree,” starts to play.  It’s been twelve months since I’ve heard it.  It doesn’t make me cringe yet.  It will.  Santa begins to sway to the music, cuttin’ a rug to Brenda Lee’s musical stylings.  Lily gets excited and carries Santa too far from the power strip.  The chord pulls taut then the lead pops out from the back of Santa’s boot where it trails across the carpet to the plug-in and he goes silent, his Achilles heel pierced by an unseen arrow, or unpierced I suppose.  Lily stumbles a bit at the unexpected release and looks around in slight confusion.

“You have to stand still with Santa.  Be gentle,” we admonish her, carrying Santa (and her) back to the hearth and plugging him back in.  The music starts over.  This time I do cringe a little.  This process repeats itself a few times before the lesson sinks in and Lily contents herself with standing or sitting next to the power strip with Santa, or as far as he’ll reach without pulling from the socket, a trip wire of Christmas spirit waiting to snare the unwary (her big sister, Emma, most likely).

photo courtesy of www.BloggingLily.blogspot.com

The Christmas tree is up and decorated.  Burgundy velvet ribbons weave in and out of pine boughs.  Limbs drip with sparkling glass and shining brass ornaments, reflecting and refracting the glint from hundreds of white lights.  Lily investigates it periodically.  Once she leans in very close.  The ‘needles’ (it’s an artificial tree) are beaded with ‘ice’.  She opens her mouth widely and says, “I bite tree”.  I watch her from my chair, wondering where this is headed, but she leaves after a few minutes, the tree unbitten.  This threat seems to have been more to see whether I’d let her bite the tree than for any gratification tree biting might have offered her.

Later she stands next to the tree watching me intently, taking blind swipes at it without taking her eyes from mine, an attention getting device of some kind, though my attention is fixed firmly on her.

“Be gentle with the tree, Lily,” I tell her, for the tenth time.  She hits it this time.  The bows sway slightly and a faint jingle of ornaments shifting and swaying can be heard.

“If you hit the tree again, Lily, you’re going to have to sit in timeout.”  She hits the tree again.  She sits in timeout. 

She leaves the tree alone then, at least for a while.

An advent calendar sits in the hallway.  It’s a big one, not one of the paper cut-out kinds with the flaps.  It is shaped like a house with 24 doors.  Behind each numbered door is candy, or a tiny ornament.  When the doors open “Santa Claus is coming to Town” chimes, and a shuttered window like a cuckoo clock door opens revealing a child in winter clothes opening a Christmas stocking full of presents.  Below the door, a scene animates; little townsfolk skate in circles around a tiny town that lights.

Lily ignores it, which is a blessing.  Her sister, Emma, opens the doors daily for them both.  Lily doesn’t really eat the candy behind the door, and the ornaments for Emma’s tiny tree are too fragile to be entrusted to her tender care, so really it’s just for Emma.  I dread the day she decides it’s no longer beneath her notice.

photo courtesy of www.BloggingLily.blogspot.com

On the main floor a large posterboard cutout of Santa Claus’ head smiles benignly from the powder room door.  It’s a remnant from some past Christmas party, and Emma loves it, so we keep it, tacking it to the powder room door. 

Lily walks past the door and pulls it off the tack.  The tack clatters to the floor, skittering across the tile before scribing slow rocking quarter circles across the tile and coming to rest.  I scramble to pick it up before she steps on it in her stocking feet. 

“Lily, be gentle with Santa.  Don’t pull,” I tell her.  I tack the fallen head back onto the powder room door and guide Lily back into the ‘safer’ environs of the Family Room. 

Santa sits ensconced in velvet.  A human-sized elf stands to his right with a clipboard.  We have a number so that we don’t have to wait in line for our turn.  Lily is allowed to play at the mall playground or investigate the Christmas train while we kill time.  All the children waiting to see Santa are like Lily.  And all of the children waiting in line are different than Lily.  But you know what I mean.  When it is Lily’s turn the elf standing guard over Santa’s person hands us a form to fill out.  Both of us are there so one of use rides herd over Lily while the other fills out the form.  It occurs to me that if I were a single parent, I’d have to fill out the form at the same time as I was watching Lily.  I shake my head that an event designed to minimize stress for autistic kids and their parents could triumph so magnificently overall but stumble at the finish line over such an obvious issue.  I again thank god that I’m not a single parent and that my wife is always there to support me.

Emma asks if we think people will think she’s autistic if she sits on Santa’s lap with Lily.  Part of me feels sad at this.  I ask her if it matters to her whether people think she’s autistic or not.  I think a part of her feels ashamed at having asked the question, as if asking the question means that on some level she’s not proud of Lily.  She thinks for a moment, then shakes her head no.  This brightens me, and appears to brighten her as well.  We ask her if she still wants to sit on Santa’s lap.  She nods and says, “For Lily.” 

When the paper work is filled out, Lily sits on Santa’s lap.  She occupies his right knee, while Emma sits atop his left.  She is calmer when Emma is with her.  Nevertheless a stranger with a white beard is holding her on his lap.  She suffers this curiously for 5 – 10 seconds.  She doesn’t yank his beard, but seems to find brief fascination in the tuft of fur dangling from Santa’s hat.  We furiously thumb shutter buttons and pray for quick focus on digital cameras.  She squirms a bit and escapes to a safe distance to watch as Emma relays both of their Christmas wishes.  Lily’s are guesses.  She never really asks for anything except McDonald’s.  Santa will definitely be getting her a gift card there, if he wants any cookies this year.

When we visit our families’ houses there are lots of decorations everywhere.  It’s beautiful, but dangerous for Lily.  She wanders from “no” to “no”, generally wreaking havoc on everyone’s’ houses without really understanding what all the hub-bub is about.  The family is gathered together.  There are more people than usual in each house, more “nos”, more music and laughter and expectations. 

We try to keep her entertained and minimize the destruction and still visit with the family, but it’s stressful.  Every holiday visit is stressful.

Lily knows who Santa is without really registering what he’s supposed to represent.  Lily knows how to say “Merry Christmas” (when prompted) without really understanding what that represents either.  We put the gifts in front of Lily on Christmas morning, and sometimes she rips the wrapping paper, and sometimes she ignores it completely.  She doesn’t look forward to Christmas, or get excited Christmas Eve for the jolly fat man’s impending housebreaking.  Christmas for Lily has all the stress it has for me, but none of the magical payoff.

I’m doing my best to try to see the world from Lily’s point of view.  I feel like I’ll be better equipped to help her if I try to see things the way she does.  I feel like I’ll better understand what she needs and wants.

Christmas is like magic to me.  But Christmas is like magical holiday torture to Lily.  Lily’s sister, Emma, loves it.  We all want Lily to love it too.  But she doesn’t.   And that’s okay.  We’ll still fight the good fight.  We’ll still try to make it special for her without removing those things that also make it special for her sister.

Some things we can’t (or won’t) change.  The decorations will still go up.  The music will still play.  We’ll still visit family.  And Santa will still be the jolly prowler, sneaking into our home when we sleep to distribute presents.  Even once Emma “knows”, that probably won’t change.

The biggest change and gift we can give Lily for Christmas is to adapt our expectations of what she’ll get out of the experience to something more ‘reasonable’ given what we know about what Lily tolerates/likes/loves.  She still loves the music.  She’ll get presents she’ll enjoy (probably).  But Christmas is NOT magic for her.  Maybe it will be someday, but for now it’s stress layered on top of stress.  It’s noise and crowds and intriguing fragile ornaments and decorations that invite, no demand, inspection but that cannot be touched.  Our expectations for Lily need to be filtered through Lily’s point of view. 

We need to understand that Lily will want to hear “Rockin’ Around the Christmas Tree” dozens and dozens of times.  We need to understand and be patient with her when she investigates the tree, or pulls Santa off the door, or opens the advent calendar out of order, or breaks Christmas bulbs at her grandparents’ houses.

Lily is a happy little girl.  And it seems ironic that we’d take that happy little girl and make her miserable in an attempt to get her Christmas experience to line up with our expectations of what her Christmas experience should be. 

Lily will have a merry Christmas, though Christmas day might not be any merrier than any other day of the week; December may be no jollier than any other month of the year.  But if we’re patient with her, and try to see things a little bit through her big brown eyes.  Maybe it won’t have to be less merry, less jolly.  And relaxing our own expectations might make our holidays a little happier too.

It’s not reasonable to take a child whose entire life and comfort is bound so rigidly to structure and routine, insert ten times the number of restrictions and expectations for one month, and expect perfect compliance, or even anything approaching perfect compliance. 

So to the extent that the holiday stresses will allow us to relax, we’ll relax around Lily during the holidays, and if not ignore her occasional forays into forbidden realms outright, at least understand them and be patient and understanding with them, remembering to gently tell her to “be gentle.”

Words With: The Domestic Goddess

AW: What was your first reaction to your child's diagnosis?

D Goddess: It was, "SEE? I TOLD YOU SO!" Because I insisted they were autistic and no one would listen to me. Sometimes they still don't.

 

AW: What was your defining moment of acceptance?

D Goddess: Acceptance? I was crying in bed one night and I said to my husband, "What are we going to do if they ARE autistic?" And he said,"We'll do the same thing we're doing now. Raise them. Love them. Let them be kids."  It was pretty profound.

AW: What inspired you to start your blog?  

D Goddess: I started my blog because I was a SAHM, I was having issues with depression and my kids were having developmental issues. I needed an outlet, a friend suggested a blog as a way to vent, some cheap therapy. It was/is very therapeutic! I have no regrets.

AW: What has been your most rewarding aspect of being special needs writer/advocate?

D Goddess: The  most rewarding aspect to me is when someone asks me for help or tells me "WOW! I have that problem, too! I never thought of doing that!"  Even if one person is help in one tiny, minuscule way, I feel like I am helping just a teensy bit. that makes me proud.

AW: What advice would you offer parents of recently diagnosed children?

D Goddess: Autism or special needs does not equal a death sentence. Your child is STILL your child. They are still exquisitly beautiful, deserving of respect and love.  Your experience is what you make it.  So suck it up, deal with it and go on living. Sure your life will be different but different is good. This is NOT a boring life. Who wants to be bored anyway?

AW: Feelings on diagnosis in 6 words or less. 

D Goddess: Tool to get what kids need.

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The Domestic Goddess has also contributed to the Through the Looking Glass (TTLG) series: 

Like Two Ships Passing in the Night

Marj Hatzell, otherwise known as The Domestic Goddess, is a Domestic Engineer, Total Babe and SAHM to two boys with autism, ADHD, OCD and a variety of other acronyms. She was a band geek in high school, lives vicariously through computers and prefers dogs to people, which means she has STELLAR social skills.

Her writing has also been featured in  The Stir, 5 Minutes for Special Needs, Thinking Person's Guide to Autism and of course, her very own blog, thedgoddess.com.

Words With: Laura Shumaker

AW: What was your first reaction to your child's diagnosis?

LS: I was sure that the psychologist got it wrong. While I knew something was not quite right, I was determined to fix it.

AW: What was your defining moment of acceptance?

LS: Matthew was ten years old, I was wiped out from trying to manage his disruptive behavior, and it hit me that his condition was life long. It was a dark time, but once I grasped the concept, I knew I had to accept it and move forward.

AW: What inspired you to start your blog?  Your book?

LS: I was inspired to write my book because of family and friends misconception that Matthew was a burden to me. How can a child that you love so much be a burden? I wanted to explain,  and hoped that my story would help others learn to love and accept Matthew, quirks and all, and teach them to be more tolerant in the differences of others. I was inspired to write my blog to continue the conversation!

AW: What has been your most rewarding aspect of being special needs writer/advocate?

LS: I feel like I have helped a lot of people. I think that when parents read about my challenges raising Matthew they realize that they are not alone. I try to show how I solve problems so that they feel empowered to tackle their own challenges.

AW: What advice would you offer parents of recently diagnosed children?

LS: 
1) Download the 100 day kit from Autism Speaks. What a great tool.

2) Allow yourself time to grieve and do not blame your spouse!

3) Build a community of other parents like yourself.

4) Remember that your child has a place in the world

5) Learn as much as you can-knowledge is power

6) Keep your sense of humor!

7) Pray for patience

AW: Feelings on diagnosis in 6 words or less.

LS: Hard, but character building!!
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Laura Shumaker has also contributed to the Through the Looking Glass (TTLG) series: 
Autism and Parenting-5 Tips to Reduce Stress
 

Laura Shumaker is the author of A Regular Guy: Growing Up With Autism and is a City Bright for the San Francisco Chronicle. She has contributed to several anthologies, including Voices of Autism, A Cup of Comfort for Parents of Children with Special Needs,Writin’ on Empty, and the forthcoming Gravity Pulls You In. She is a regular contributor to NPR Perspectives and a columnist for 5 Minutes for Special Needs. Laura’s essays have appeared in The New York Times, the San Francisco Chronicle, the Contra Costa Times, Literary Mama, the East Bay Monthly, The Autism Advocate and on CNN.COM.

Laura speaks regularly to schools, book and disability groups.

She lives in Lafayette, California with her husband Peter and her three sons.

Visit her Facebook Fan Page!

TTLG: Lessons Everywhere You Look by Kim Wombles

Some days I wonder if we were set up from the get-go to expect less, to hope for less, to dream of less. Bobby's prognosis was grim and bitter to the heart when he was a tender five. And yet here he is at 21 continually amazing us with the strides he makes.

The public perception of autism continues to be one of grim stereotypes. Certainly there is a sizable minority edging to the halfway mark of moderately to severely disabled autistic individuals; this appears to be what the general public pictures when they hear the word autism. Just as certain is that my three children aren't there; they aren't severely disabled, not now, but once upon a time, my son was much more severely impacted so that many standardized tests placed him in the first percentile.

To say that there is a huge array of disability in the first percentile is to put it mildly. There's a world of difference between where my son once was and where the most severely autistic are. I think this reality that the spectrum is vast and wide is one of the most important public awareness messages we can get out there. We don't want to ignore the realities of the most severely disabled, but we want to make sure that people get an accurate sense of what autism can look like. The reality is that autism is, for most of us, a product of availability heuristic: the particular expression of autism you see most often (your child or yourself, or the other people in your life with autism) is what autism is to you.

Autism is a pervasive developmental delay, not the end of development, and children who were significantly delayed, dramatically impacted by their autism, can come huge distances, so much so that around 20% will lose their diagnosis. While my three aren't all of a sudden non-autistic, it's important to acknowledge that they've come so far and the delays aren't always obvious to the casual observer (especially the girls who are academically shining).

My three work so hard to develop skill sets that don't naturally arise (at the regularly scheduled time) that there are days where my hope for them far outstrips my worry. I dare to dream of possibilities we were told would be impossible for my son. I believe more each day that where functional life skills are concerned that his abilities are continuing to come along, to catch up, so that living at least semi-independently can be a real goal, that with training, a paying job may indeed be a part of his future. The real world, outside of school, allows for that chance to develop and grow, to build on successes. In an academic setting where his intellectual disability is most obvious, the frustration of not-able-to fed on each failure to master a skill, each year where skill sets remained seriously delayed and at the first percentile. In the real world, though, of household chores and physical labor, successes build on each other and give my son the sense of mastery and accomplishment. He's willing to try, and his comfort zone expands and grows so that he is able to not only do more but to engage in more conversation with new people, to respond to and directly engage people he's only recently met. Competence begets competence.

He volunteered Friday and Saturday with the walk, and Saturday afternoon, he surprised us by being up to the new challenge of driving the riding mower home from a neighbor's house. Rick followed closely behind, but the boy man took an important step and navigated a complicated task successfully.

Thankfully his hands WERE on the wheel while driving.

My point is, in sharing this new leap in a series of leaps, that when we are primed to believe that disability is inevitable and constant, that the best we can "hope for" is the last thing we'd wish for our children, it can be tremendously easy to fall into a habit of expecting no more than we've been told they can ever aspire towards and working towards even less. We have much work to do, not just with the public, but with ourselves, as well: to believe that progress and new skills are acquirable if we keep pushing for it, working on it. No, not all of our children with autism and other issues will leave disability behind, but they can all make progress, grow and develop. We must remember that when we build on a series of small successes, the feeling of competence will make additional progress all the more possible, because they will believe it to be possible.

We've got to stop those professionals who may mean well but who frame our child as a series of disabilities and never-gonnas. We must, instead, focus on where they are now in terms of skills and abilities and build incrementally on those successes. We've got to stop ourselves, as parents and relatives, from focusing on the disability, too. It won't be easy, especially when the reality is daunting, that the disability is severe, but having faith that we all have the capacity for growth and development is key to taking the steps to set up an environment where that growth is possible.

Explaining how to back it up (after he'd driven it home).

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Kim Wombles is an Instructor of English (and psychology) at Cisco College. Mother to three awesome kids (who have some issues), wife, and all that jazz. Sometimes snarky. Obsessed with knowledge, books, cats, flowers.  For more on Kim, please visit:

Countering..., Respect for Infinite Diversity and Autism Blogs Directory.

TTLG: The Paper Heart by Susan Rosano

It was a cold March afternoon and I was stressed.  I decided to go to the consignment store to work away some of my blues.  Consignment stores always bring forth great distraction and take me far away from my daily routine. It’s a modern day expedition through someone else’s closet.

On this day, in order to go out, I had to take my son Christian with me. Not the best form of consignment shopping, but there was no other choice. Christian is my youngest son who was born with special needs. He was diagnosed with cerebral palsy, autism, cortical vision impairment, a feeding disorder and immune deficiency. In other words, he is unable to walk, talk, see well, chew food in a typical manner and is sick with colds, rashes and ear infections on a regular basis. He is a loving, happy, sweet child who hardly ever cries, but loves to tease his family and create mischief.

When Chris was in preschool, he was extremely demanding of my time and physical efforts. He typically didn’t stay still until he was sound asleep. Usually, he didn’t like sleeping and never, ever slept all night. Chris would wake up in the middle of the night, happy and ready to play. Once he woke up, he would get into things around the house he shouldn’t have been touching. This was no fun for me in the wee hours. I spent most of my days sleep deprived, struggling through work, only to return home to make dinner for my other two boys, as well as Chris, and keep the house running smoothly.

I was a single Mom and taking breaks from my daily routine was mandatory; I needed the distraction of the consignment store.  I packed the carriage for Chris to play in while I shopped and a couple of favorite toys to keep him busy so he would not grab tags hanging down from clothing on the racks and stick them in his mouth.  I also brought with me my “invisible wall of defense,” the barrier that said to other people “Yes, he’s a kid with special needs, and  no I don’t want to talk.”

Going to the store with Chris was always challenge. People stared.  Some reacted with fear.  Children asked parents questions about Chris in front of me. Occasionally, people moved to another line from behind us at the checkout counter.  I wondered sometimes if they were afraid they would “catch” his disability like the flu. At times, I felt very insulted. Other times, I could laugh about it. Sometimes, I cried. Why were people so ignorant? Why couldn’t Chris be just like every other child?  Instead, he was the subject of unconcealed observation and comment in a public forum. It created a feeling of hostility on my part; most of the time I was afraid to admit it.

On this trip to the consignment store, I was determined to go on my search for something beautiful with no interruptions. I was ready and equipped for all of Christian’s needs so he would be mellow, entertained in his carriage and relatively unnoticeable. Things were going well.  I started looking through the racks, dresses first, and then pants.

I tuned out the world until I realized an older woman standing nearby, staring at Chris. I ignored her. She walked by, still staring. I ignored her and went to the back of the store to the sale racks in my attempt to get away from her. I always enjoyed this area because there was the big possibility I could find a pair of $7.99 pants with fifty percent off. But there she was, staring at us again. I grumbled to myself, saying a few choice words. I wanted her to go away.  She must have walked by us about ten times.

Finally, the woman approached us and said, “Your son is beautiful.”

Coldly, I said “Thank you.”  

She said “I wanted to give him a gift because he is such a beautiful child, but I didn’t know what to give him. I’ve been walking around the store trying to think of something to give him for a while now. All I have for him is this.” She smiled and handed me a piece of paper ripped into the shape of a heart.  It was ripped from her address book.

I felt that she had probably known a child like Chris before who perhaps was no longer with her, but was someone she had loved deeply.  This gift from her heart was sincere and loving. It remains one of the best gifts I have ever received for Chris.

Since then, I always open my heart to people who stare at Chris when we are out in public. I learned that this type of interest does not always come from a negative place.  I learned to say “Hello” to people who seem interested in us and invite them to say “Hi” to Chris. Since that meeting in the consignment store, Chris and I have had many wonderful chance meetings with people in public places. I’ve found that people are inherently kind, loving and friendly in their reactions to my son.  I’ve torn down my “invisible wall of defense” and ceased grumbling when approached by strangers in a store. And to think that all my new found wisdom was due to a simple beautiful gift, a paper heart.

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The Paper Heart has been edited for AutismWonderland.  The complete exerpt can be read in Susan Rosano's book, "Living the Gift." The book may be purchased on her website at New England Expressive Arts. 

TTLG: An Artificial Divide? A Look Back by Kim Wombles

I wrote the following post 03/30/2009 over at Detritus, as I was first getting involved in the online autism community. Hmmm. It's easy to see, looking back at this post, how Kathleen and I began to work together to try to build places where community could happen. 

...

My son's diagnosis of autism was made before was autism was the in-diagnosis. It was 1994, and he was 4 years old, Back then, refrigerator mothers as a cause was still being bandied around. Bettleheim's book was the first thing I read about autism. It was a traumatic introduction to autism. Now, the first and most likely thing parents are going to hear in conjunction to autism is vaccinations being the cause. Refrigerator moms weren't the cause, and it isn't really likely that the MMR is to blame, either.

I think support groups, if you could find them then, were easier for parents of children with autism. It seemed a more cohesive whole, a solidarity. We had children with such tremendous difficulties and no real treatments. We didn't have a whole lot of information, and we were scared about the prognosis. We supported each other, commiserated, discussed what worked on good days, what seemed to go wrong on bad days. We didn't argue over vaccines (it would be another four years before Wakefield did his damage). We didn't argue over cause. We focused on how to help our children now.

I've been looking online at today's support groups and there is no solidarity, no sense of a cohesive community. That's probably okay. Autism doesn't render us identical. Our children have a wide range of issues with the same umbrella name. Many of us forget and assume our child is the prototypical autistic child. We assume that all the physical or mental symptoms represent autism. That's not the case, and hopefully we will get better at diagnosing co-morbid medical disorders and not lumping them in with autism. It is easy to assume a child's issues all have one cause, but not necessarily so (I think parents do that more than do physicians or psychologists).

There's plenty of hostility in many of the support groups and blogger's pages. Plenty of blame. Lots of conspiracy theories. In 1994, online support groups weren't in ready supply, so we got our support in small groups, meeting face-to-face. Now, we have anonymous screen names. We also have plenty of options for support groups.

We aren't welcome at all the options, though. If you are an anti-vaccination, Jenny McCarthy, Generation Rescue type, you don't have much room for someone who thinks differently. Especially if you think that the fact there are three children in the family with autism and plenty of family members with similar, though less severe, traits tends to point to genetic factors.

No, there doesn't seem to be open-armed support for all. Some folks see their child's autism as a scourge to be eradicated. They think that somewhere under all that autism is the child, if you can just get rid of the autism. Some parents would change nothing and have society adapt to the child as he or she is. Others see their child as neurologically different, with some challenges to be assisted in overcoming. I suppose it partly depends on the number of co-morbid disorders and the degree of impairment the child faces.

My reality is that my children's autism is an inseparable part of them. Their brains are wired differently from "neurotypical" individuals. This has created challenges for them to overcome so that they will "fit" in with society. My son has additional difficulties beyond autism which has made his journey more challenging. He's probably not going to live an independent life, but he has every ability to live a happy, helpful life that is of value. We should all be so lucky to be loved, valued, and supported as he is. I work every day at making his road easier, but I do that by giving him the tools he needs to cope, not by eradicating the autism and not by seeing his autism as a disease.

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Kim Wombles is an Instructor of English (and psychology) at Cisco College. Mother to three awesome kids (who have some issues), wife, and all that jazz. Sometimes snarky. Obsessed with knowledge, books, cats, flowers.  For more on Kim, please visit:
Countering..., Respect for Infinite Diversity and Autism Blogs Directory.

TTLG: "Me? Courageous?" by Patty O. of Pancakes Gone Awry

My friend called me courageous today. 

Me. Courageous.

I don’t think anyone has ever called me that.

I’m kind of reserved, a book worm, if you will, and I am definitely not the life of the party.

I am deathly afraid of heights and would never, ever go bungee jumping or hunting in Africa.  I’m not much of a thrill seeker.

No, I’m just stay-at-home mom of three kids, one of whom happens to have autism.

A mom who sees a huge need in our area and has decided to do something about it.  We have no social skills group in our town, though there are plenty of kids who desperately need one. 

Instead, I have recently decided to start a social skills group in our area myself.  One that uses LEGOs to teach kids to work cooperatively.  I found a center that will train me in this program, but it costs money. 

A lot of money. 

This is why I applied for a Pepsi Refresh grant; the money I win from this grant will cover training and many of the supplies I need.

It is because I started this project that my friend, who happens to be the most active autism advocate I know, called me courageous.

My first instinct was to deny her compliment.  Who, me?  Courageous?  Pffft.  Not me!

But the more I thought about it, the less I dismissed her opinion.  I realized that parenting a child with autism does take courage. 

It takes courage to take your child in for a diagnosis and listen white knuckled as some stranger puts a label on your wonderful little boy. 

It takes courage to seek out help for your child, to take her to numerous therapists and specialists and to follow their advice.

Taking your child to a birthday party takes levels of courage I imagine would be necessary for going to war, because you know things could turn ugly faster than you can say “Sensory Meltdown.”

Courage is imperative when you sit your child down and explain his diagnosis with him, desperately trying to convince him that he’s not strange or weird or bad in any way, that he’s just different.  

You need to be brave when your child has been made fun of because of her differences.  And it takes courage to do your best to convince her that she’s perfect just the way she is.

Courage is a necessity as you fight the schools to ensure your child gets the services he needs.

And I suppose it is brave when you decide to quit waiting around for the system to provide the services your child needs.  When you take matters into your own hands and start a support group or a play date or a LEGO social skills club.

So, I will no longer scoff when someone says I’m courageous.

Because I am courageous. 

And so are you.

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Patty O. is the mother of 3 kids: a 7 year-old boy, a 5-year-old daughter, and 2 year old son. Her oldest son has Sensory Processing Disorder and is on the autism spectrum, while her daughter also has SPD. Patty is currently stay at home mom, but used to be a college and high school English teacher. Please follow Patty at Pancakes Gone Awry.

Autism and Parenting: 5 tips to reduce stress by Laura Shumaker

My heart was racing.

I was stuck in traffic in San Jose and it was clear that I'd be late for a meeting at Matthew's program in Santa Cruz at 3pm. I had another at 4pm with his psychologist across town, and needed to get on the road by 5:00 at the latest so I could be home in Lafayette for my youngest son's high school talent show.

Just as I started wondering if I could figure out a way to be two places at once, (I actually thought I could figure it out) my phone rang. It was Matthew.

"I'm in a seriously bad mood. No one understands me. After your meeting, can you take me out for pizza and french fries? Please?"

Research indicates that parents of children with autism experience greater stress than parents of children with intellectual disabilities and Down Syndrome(Holroyd & McArthur, 1976; Donovan, 1988), and I concur.

We are overwhelmed with managing our grief, grinding though assessment and therapy appointments, managing peculiar behavior, adjusting to strange sleep patterns, paying for therapy, and balancing it all with the needs of the rest of the family. We're trying to make each moment a "teaching" moment, and we are running out of steam.

If you are reading this and you are nodding and tears stream down your face, let me tell you some STRESS busters that have kept me safe and sane. You'd think of them yourself if you weren't so stressed out:

1) REDUCE your load. If you get up in the morning and see a day like I have described above, pare down your commitments to one or two a day, and give yourself PLENTY of time in between. Scheduling anymore than that is not only stressful, it's dangerous. You are more likely to go around a corner a little too fast if you are in a hurry or STRESSED.

2) Be selfish, not selfless. Everyone needs you RIGHT now, but they can wait. You won't be able to give much of yourself if you are burnt out.

3) Learn to say no. Someone else can drive on a field trip, someone else will be happy to assemble gift baskets for the auction. If three therapy appointments a week are pushing you to the edge, just do two. Pare down.

4) Find a great helper, one that you really like. This was one of the best things I ever did. I hired mostly college guys who could double as mentor/ friend types and babysitters. They will help you solve the "being two places at once" problem.

5) You need sleep. If your child is keeping you up, discuss the issue with his pediatrician. If worry is keeping you up, discuss the issue with your doctor.

How did I solve my super-stressful stuck in traffic, late for meetings, phone call from Matthew day?

1) I told Matthew I'd call him back.

2) I got off the freeway and called Matthew's program and his psychologist and told them there was too much traffic and that I'd have to reschedule.

3) I called Matthew, who was already in a better mood, and told him I'd see him another day.

4) I got home in time to go out to dinner with my husband and my son before the talent show.

5) And I had a good night sleep.

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Laura Shumaker is the author of A Regular Guy: Growing Up With Autism and is a City Bright for the San Francisco Chronicle. She has contributed to several anthologies, includingVoices of Autism, A Cup of Comfort for Parents of Children with Special Needs,Writin’ on Empty, and the forthcoming Gravity Pulls You In. She is a regular contributor to NPR Perspectives and a columnist for 5 Minutes for Special Needs. Laura’s essays have appeared in The New York Times, the San Francisco Chronicle, the Contra Costa Times, Literary Mama, the East Bay Monthly, The Autism Advocate and on CNN.COM.

Laura speaks regularly to schools, book and disability groups.

She lives in Lafayette, California with her husband Peter and her three sons.

Visit her Facebook Fan Page!