Saturday, October 29, 2011

My Idea of a Good Time

I spent last night in a hotel room five minutes away from home. 

It was a mental health decision based on my feeling entirely burned out.

Here's what went on:

I set up my laptop. Posted. Then promptly fell asleep for two hours. Upon waking did a meditation to music on my iPod. Then took a very long shower without feeling rushed.

Went to Whole Foods and bought a piece of pizza. The kind I like, not the kind everyone else likes. Brought it back to the room to have with my Trader Joe's Limeade. I considered wine, but knew it would put me to sleep and didn't want to spend all my "me" time sleeping.

Back to the room. E-mailed Carrie. Emailed Jan. Researched PANDAS (uninterrupted, and with a clear head) for two hours.

Called my husband.

Emailed Carrie again.

Watched two epsisodes of Sister Wives and felt better about myself. I could be married to Cody.

Did some more PANDAS research with Undercover Boss on in the background. Never had heard of the show before, but decided we should TIVO it. Read the O Magazine issue on "intuition" I'd been carrying around for months but hadn't had time to read cover to cover.

Went to sleep at 1:00AM.

Woke at 6:30 with nausea. Cursed Whole Foods pizza. It went away as quickly as it came. Forgave Whole Foods, went back to sleep. Woke up at 8:30.

Another meditation. Asking Seth what he needs. Got some answers.

Leisurely checked email.

Read more.

Checked out at 11:00, 22 hours after I left my family in my husband's capable hands.

All my problems aren't solved, but I'm in a much better position to deal with them.

I might have to make this a more regular thing.

 

Michelle O'Neil is author of the memoir Daughter of the Drunk at the Bar. She blogs at Full Soul Ahead! She has an 11 year old daughter on the autism spectrum and a nine year old son with PANDAS.

Friday, October 28, 2011

Let's Pretend

I sit among parents

who rub their foreheads,

try to smooth the crease between their eyes,

and fidget with their handouts on back to school night.

We all try to find comfort

on metal benches in the elementary school cafeteria.

 

Just for the moment,

I want to say,

let’s stop and close our eyes,

pretend that we know

it all turns out okay,

pretend that we can see our future adult children

happy, healthy, independent.

 

Oh, there’s the peace I have inside myself.

Yes, there’s my husband’s gentle hand.

I want to hold on to this,

and know that it will be okay.

 

Now, I can open my eyes,

and know, really know,

it is true.

 

Jennie Linthorst is a therapeutic writing coach and the founder of LifeSPEAKS Poetry Therapy. She works privately with men and women helping them tell their stories and heal, through reading and writing poetry and personal essays. Jennie coaches clients all across the country and around the world via phone, Skype, e-mail, in addition to in person meetings. She is the author of a book of poems, Autism Disrupted: A Mother's Journey of Hope. Her family’s story is captured in the award-winning documentary film, “Autistic-Like: Graham’s Story.

Bathroom Talk

Children diagnosed with Prader Willi Syndrome often suffer from low muscle tone. In my son Nicholas, this weakness effects more than just the strength of his muscles, it also effects many of his internal systems, things like breathing, digestion, even his heart rate.

It also effects his intestinal tract. Constipation and difficulty in his ability to "go" are some of his more common ailments. Please pardon the bathroom talk...

As a result of this slowed elimination process, Nicholas spends a lot of time just sitting in the bathroom. Now, for my son Weston, this would be a huge problem since sitting still for any length of time is nothing short of torture for him. But for Nicholas, spending time alone in the bathroom has become one of his new favorite pastimes. It is his own private oasis, a quiet place to sit, talk, sing and enjoy his own company.

Today, Nicholas and I have just returned from an appointment with his orthopedist.  We enter the house and Nick announces he needs to go to the bathroom. He has acquired this interesting " I gotta go" announcement behavior from Weston, who for some reason feels compelled to formally announce to me every time he needs to go to the can. Why, does he do this, you ask?... I have noooo idea.

Anyway, Nicholas goes into the bathroom while I start to prepare lunch. When I hear....

"Da da da da Dora......Dora, Dora Dora the Explorer..." The sound of soft singing drifts merrily from behind the bathroom door.

"Swiper no swiping..." he sings, scolding the poor imaginary fox.

Then suddenly the singing stops. I hesitate for a moment before smearing peanut butter quickly on his sandwich.

I listen closer. The sound begins again, only this time, I hear conversation.

"Hey Tommy, we need to change his dipeeee." He says

"What do you mean WE?" he answers.

And I realize he is now reciting one of his favorite scenes from Rugrats. The conversation continues for a good five minutes. He is comforted by the familiarity of this repeated scene. Suddenly, once again, the conversation stops.

It is quiet for a few seconds....I walk slowly over to the bathroom door to listen.

"I am Lightening! Lightening McQueen....rrrrrrccccckk!" shouts the talking red plastic race car that I assume was left abandoned in the bathroom from a previous "Nicholas" visit.

"Vvvrrooooom, vrooommmm, kachink!" the cocky race care exclaims, Nicholas giggles hysterically.

Then, once again. Silence.

Not wanting to disturb my son's amusing pantomimes, I hold back my laughter and peak inside the crack in the door where I see Nicholas sitting on the toilet now looking at his reflection in the window on his right. He is beginning a conversation with himself while simultaneously watching the movements of his mouth in the window.

"We need to find the troll bridge," he says, "Can.....you.....find..... it?" he asks and begins gesturing with his hands, pleading with himself to find the bridge. He is continuing to watch himself in the window and is enunciating each word very slowly. He moves his head left to right, studying the variety of expressions he is exaggerating on his face.

Suddenly, he turns toward the door. I pull my face quickly back, hoping he hasn't seen me.

Again, there is silence for a moment as I stand motionless behind the door, holding my breath.

Slowly the soft singing begins again as I hear Nicholas start to recite the rainbow song.

"Red and orange, green and blue, shining yellow, purple too. All the colors that you knooow........"

He holds the knoooww for a few seconds and continues,

"Live up in the rainbow!" He finishes the song and claps his hands.

Nicholas has now been in the bathroom for 15 minutes. I am about to knock on the door to hurry him along, when I stop myself.

I reflect back to when he was a baby and how his low muscle tone had made him tire when he drank from his bottle. Doctors used the term "failure to thrive" and he was placed on a feeding tube. He was called a slow feeder. I worried that he would not gain any weight.

When he was two years old, he finally learned to walk. He was called a slow walker. I worried that he would never walk.

Speaking, writing and running all took longer for Nicholas than most children. He was called a slow starter. I worried that he would never learn to do any of these things.

At first, Nicholas's delays, his slowness to acquire skills, made me concerned and anxious. To me, the word "slow" was synonymous with "worry". It was a disturbing concept.

But today I realize that once again my son has taught me to embrace that which I fear.  He has taught me to value the beauty of slow.

He lives his entire life moving slowly and deliberately, enjoying every moment of his life. He is on his own schedule. He embraces that extra time he needs to do things. He never worries about wasting time or getting there fast. He lives in the moment. He creates enjoyment out of the most mundane of everyday tasks. He performs these tasks while singing, dancing, loving and just living.

I decide not to knock on the bathroom door.

I go back to the kitchen to continue listening to my son's delightful bathroom antics.

I am listening to him enjoy his life. As I listen, I too laugh and enjoy my life just a little bit more.

I return to making Nicholas his lunch, only this time, I take my time. I make his sandwich slowly and deliberately taking time to stop and smell the peanut butter.

To read more about our adventures dealing with PWS, AHDH, Asperger's and a variety of other acronyms...

Please come visit us at www.onalifelessperfect.blogspot.com

Thursday, October 27, 2011

PANDAS Resources

Pediatric Autoimmune Neurological Disorder Associated with Strep

I recently posted on my blog about my son's struggle with what we think is PANDAS, and my own struggle to keep up with it. The next day via email I received a very informative newsletter from pandasnetwork.org. If you have a child with PANDAS (or suspected PANDAS)  it is a valuable resource and I highly recommend subscribing. As I was with my daughter and ASD, I am blown away by the dedication of other parents and a few brave and committed doctors. 

I am in research mode, figuring out how best to help my sweet boy. 

Saving Sammy is one family's story about a boy who was severely affected by PANDAS and was brought out of his nightmare through the use of antibiotics.  

IVIG is one of the newest treatments for PANDAS and it is very expensive. The newsletter mentions a clinical trial taking place at Yale. If you are interested in it, the clinical trial is #

11-M-0058

 

 

 

I recently posted on my own blog about my son's struggle with PANDAS. I recently received a very informative newsletter from pandasnetwork.org. If you have a child with PANDAS it is a really valuable resource and I highly recommend subscribing. As I was with my daughter and ASD, I am blown away by the dedication of other parents and a few brave and committed doctors. 

Clinical trial for IVIG PANDAS OCD

http://www.clinicaltrials.gov/ct2/show/NCT01281969?term=Pediatric+Autoimmune+Neuropsychiatric+Disorders+Associated+with+Streptococcal+Infections+%28PANDAS%29+Research+Study+for+Children&rank=1

PANDAS 

 

PANDASnetwork.org

Wednesday, October 26, 2011

Open Letter About Judgment

This past week, my family and I had another appointment with a specialist. For us, it's like a six-month rotation from one specialist to another. Just as we think we are hitting a lull, it's time for the rotation to begin again.

At our appointment with our new orthopedic, however, we had an interesting conversation about our situation of raising three girls, two with brain injuries.

“It's not unique that you have two children with cerebral palsy,” said the orthopedic, a thin woman with blonde hair, green eyes and a pleasant smile.

“It's unique that they are both biologically yours. Many of the parents we see here who have two special needs children but most of the time they have adopted them,” she added

“I'm not sure that I understand who those parents are,” I quickly responded, just as I have said before when discussing parents who adopt special needs children.

Sometimes my responses are automatic, like I'm conditioned to offer MY answer on why people choose to adopt kids like mine.

“To each their own,” she responded, as the conversation came to an end.

As a caregiver and a parent for the past nine years, one thing that continues to be apparent in each appointment is that I am bound to learn something new that's unrelated to my daughters' health conditions.

There are tiny lessons I walk away with, ranging from my interactions or observations in the waiting room to a revelation on the drive to or from the appointment itself.

If I could tally each lesson on paper, I'm sure I could fill a book. It would be a simple list of the lessons that contribute to becoming a better person – or at least pondering a new perspective.

What's more is that I have found that typically the lesson carries into other interactions or happenings beyond that appointment, like my weeks have “lesson themes.”

The lesson in our exchange with the orthopedic is that as parents who didn't ask for our situation, there are other people willing to take it head on, and then some. My comment was purely judgmental because I questioned the intentions of such parents.

As a person, I find that sometimes I want to be singled out, I want special attention for all my extra parenting efforts, and it all boils down to self-preservation while questioning the intentions of others.

I am guilty of thinking that I can do things better than others.

Until that conversation, I didn't think I could understand why people would 'choose' to adopt kids who are medically fragile.

But, how can I question when I truly believe the intent is they simply want to give children with special needs more than a foster home or an institution would give them.

So if there was ever a theme for this week, it was that I learned the difference between being judgmental and being discerning.  

Judgment is very tricky. While I try to not be judgmental, I constantly am. I catch myself more than I used to and am working on it all of the time.

Even when I think I understand what it's like to be a parent of special needs children, I can only walk in my shoes, on my mountain and explain my view from here.

While I know that I will not always agree with other parenting styles, their motivations or other topics (matters of the heart or the mind), I'm working hard to differentiate between judgment and discernment.

If you are anyone who's like me (and I think you may be) then you are doing the best damn job you know how to do, and I'm gonna constantly keep myself open to see what I can learn from you.

Tim Gort is a writer, public speaker and advocate who shares his personal challenges and triumphs of being a father of three, two with cerebral palsy, at the family’s bog: http://thegortfamily.blogspot.com

Tuesday, October 25, 2011

Unrelenting

I hate to admit it, but I've been putting off the calls to the other health care teams regarding the kids. 

We've been "stable" in the house for about a year and a half now, with the exception of our normal 4-6 hospital stays per year for various reasons connected to their immunosuppressed selves. It's been so nice to not deal with The Next Big Thing, or even the dentist recently, for that matter.

After dialysis, 2 kidney transplants (one for each kid), a mental illness hospitalization, and two years getting our family put back together to have some normalcy I've enjoyed the break from the trauma of it all. We've kept the appointments we've had to and that is it; we didn't offer up the kids for any extra specialists.

But today I had to make an appointment with the liver team. It's time to talk about The Next Big Thing. While they are not going to need liver transplants anytime soon, they are on the horizon and it's time we start to talk about when.

There is no real down time because it is not as though I can magically forget these things exist. The appointments that need to be handled are always in the back of my mind, ready for the sliver of time to fit them in between walking through the world in our normal.

So next Tuesday, the kids will miss the morning of school and we'll get up early to be the first ones at clinic after we stop for a bagel. And we'll talk about another organ that both of my kids need. There is something so familiar about this conversation...

Julia Roberts blogs at Kidneys and Eyes and co-founded Support for Special Needs, a social network for families of kids with special needs. A lover of Vintage Photos, she also owns Slice of Crazy Pie, which sells fun and cool stuff in support of special needs.

Saturday, October 22, 2011

Thanks, Woody

 My youngest son is obsessed with Woody the Cowboy from the Toy Story series.  Of course, he came to the series late—after the release of Toy Story 3.  He wasn’t interested in any of the other stories for quite some time.  He simply enjoyed the adventures of those loveable toys as they strive to return to their beloved Andy.   Eventually, he decided that he would watch the old videos we had of the other parts of the series.  He was hooked.  I found an old Woody that his older brother used to play with and B. was delighted.  Woody was real for him.  He didn’t care that Woody was a bit worn—to B., he was perfect.  He became the friend we wish all our kids had. 

 Woody has been around forever—at least it seems that way for me.  My husband and I went to see the first movie when we were newly engaged.  So, yes, it seems like forever.  That was over 15 years and another lifetime ago.  I still remember going to see the movie and loving the underlying message of “You’ve got a friend in me.”  What’s ironic is that all Woody wanted was the life he remembered before the newest arrival.  How many of us think back and wistfully recall days gone-by before the arrival of “the label” changed our worlds?

 Yet, like the relationship between Woody and Buzz, we learn to embrace the change.  I wouldn’t say there is exactly a “friendship” with the Big A…but there is an acceptance.  Don’t get me wrong, it isn’t easy and there is always something to overcome, endure or address.  You learn to live with the new addition.  You learn new buzz words (pardon the pun).  You learn to accept that you are just a person—unlike Woody and Buzz you are real and your pain is too.

 But I digress, back to B. and his ol’ pal Woody.  Just like Andy, my guy takes Woody just about everywhere now.  He sleeps with him, takes him in the car, plays with him outside, sits with him on the couch, and even takes him to the doctor.  I made the mistake of letting him take Woody to church one time—Woody needs to worship from home from now on.  He talks to Woody and Woody listens.  Woody has been great speech therapy.  Woody doesn’t have to worry about the laundry or making dinner for everyone.  Woody doesn’t struggle to make out his words or mind that he repeats a phrase over and over and over again.  Woody didn’t mind when B. painted him with sidewalk chalk paint or being dunked in the sink.  Woody even goes to bed with B., getting tucked in to keep him company.  Woody will be the solace when Mommy dares to go away for a couple of days beginning tomorrow.  I will be with other parents of children and young adults with special needs who understand the planning and how having a pal makes it easier for the ones back home.

 I am working on a Woody costume for B. for Halloween.  It has conjured up so many memories since I did the same for his older brother years ago.  It’s a pretty good costume as far as sensory needs go too—a soft sweatshirt dyed yellow that I will mark with a permanent marker to get the red pattern with 2 faux buttons glued on and a pair of jeans he already has broken in.  I opted for some comfy brown boots instead of cowboy ones.  (I really didn’t need to deal with the clomping around either.)  The bandana may be tricky and I have the old cow print vest I made his brother somewhere down the basement.  However, that hunt will be worth it to see it on him.  I took the easy way out and bought the hat, holster and that online.  Still, it will be better than the store bought version and warm enough to keep him warm through the chilly night.  His treat bag is even emblazoned with characters from the movie.   We’ll hit a few houses, practice repeating “trick-or-treat” and swap out the less-desirable treats for mini-Hershey bars at home.  Woody will probably come with us on the adventure I’m sure. 

 So, thanks Woody for being such a pal to both of my children through the years, but especially to B.  He needs a friend and you are that for him.  No, it isn’t perfect and I really wish you were real.  However, I recognize that an imaginary friend is better than no friend at all.  And, it is a developmental milestone of sorts that he has achieved.  B. actually tries to “play” with you Woody, which is a triumph too.  And just like your song says, my son really does have a friend in you.  It’s a step.

 And even if B. does leave you behind one day Woody, you will be one of those bittersweet memories I will cling to through the years.  Who knew a cartoon cowboy could be a hero to me as well.

“Other folks might be a little bit smarter thank I am, bigger and stronger too…Maybe, but none of them will ever love you the way I do.  It’s me and you, boy.  And as the years go by, our friendship will never die.  You’re gonna see it’s our destiny.  Boy you’ve got a friend in me.  Yes, you’ve got a friend in me!” 

Don’t know the song?  Don’t have someone playing it constantly in your house?  Here:
http://www.youtube.com/watch?v=EcXURC_nNhc

Friday, October 21, 2011

First, Love

 My grandma died last week. She had a very good death, something that I am, sadly, very qualified to determine.

I have yet to write the story of her passing; of my profound gratitude at being a part of her peaceful transition to whatever comes next; of my experience of love and family in my grandma's cozy bedroom as she finished her living. I will tell that story, and soon, but for now, I am deeply occupied with one of the lessons my grandma taught me.

I do not idolize her. She was a flawed woman who lived a hard life and of the many words I could use to describe her, nice would not be one of them.

Nope, my grandma was not a conventional cookies-and-milk sort of a woman. She was more hard edges than soft roundness, in ways both literal and metaphorical.

What my grandma did was love me. Every day, all the time, no matter what. She loved me when I was easy to love—charming, bright toddler; eager, bookish 9-year-old; curious adult who wanted to hear all the stories of her interesting life; middle-aged lunch companion. She loved me no less when I was far more difficult to love—sour, unpleasant teenager; high school dropout; neglectful young adult who didn't make time to call.

She was there, always, often in the background of my life, and she waited there. She loved me from near or far, never pushing but always available.

I don't recall ever having a conversation about love with my grandma. She was very intelligent, but not much of a philosophizer or deep-conversation-haver. And still, she taught me some of the most important lesson about love that I will ever learn: you show up for the people you love. You just show up, whatever that might mean, however it might look, you show up.

I'd like to gracefully segue this, but my face is leaking, so I'll just be less-than-graceful and say my grandma's example is the bedrock on which I parent. A child with a serious mental illness can be a damn hard child to love; that child's embittered teenage siblings are no easier. I have felt hopeless about some of those relationships from time to time, but I keep showing up. Whether my kids can hear me or not, I let them know that I love them.

I'm challenged, constantly, by this special needs parenting gig. I mean, I was challenged by parenting long before my special needs son entered our lives, but his arrival added new dimensions to the difficulties. I second-guess myself; wonder what I should do next, how I should handle this situation or that issue. I struggle and question and try.

For today, I'm taking a play out of Grammy's playbook. It's probably appropriate for me to work hard to parent well; to choose my actions carefully. But for today, I'm just going to show up and love my kids. I could do far worse than following my grandma's example.

Adrienne Jones lives in Albuquerque, NM with her husband and their four children. She writes the blog No Points for Style.

 

Wednesday, October 19, 2011

Those Fleeting Golden Days

As Connor's seizures have continued to worsen over the past year and we've been forced to raise his medication levels higher and higher, we've watched the boy we know slowly become buried under a layer of fog.  It's not just the sedating levels of medication, though I'm sure those have some effect-- it's that the seizures are taking their slow, inevitable toll on his body and mind.  On his worst days, after a long run of seizures, sometimes he spends entire days now so exhausted he doesn't want to do anything but lie on my lap curled into a little ball.  His progress across the board has tapered off, and now we're doing our best to hold even.  It's harder to hold his attention, because he's so focused on just keeping his body together.  His smiles have become far more rare, his clonus (muscle trembling due to neurological damage) has become more pronounced, the difference between his left and right sides has slowly become more evident, and he's having a more difficult time controlling his mouth-- we're often going through three or more shirts in a day.

And yet every once in a while we inexplicably have one of those golden, fleeting days where Connor feels really good, his energy returns and his sunny personality shines through.  Yesterday he woke up laughing and calling out for us.  When I came in to pick him up, he grinned from ear to ear and stretched out his arms; a greeting that I haven't seen for literally weeks.  He chirped and giggled through the morning, waved hello to everyone we met going in to school, and just charmed the pants off of his teachers during the day. 

When he started shrieking with excitement at the top of his lungs in the fabric store, I actually laughed I was so happy.  So we were getting odd looks.  So what?  My child was engaged, interested in what was going on, and demanding we go down the tulle aisle for the third time in a row so he could run his fingers through the rainbow of fabric.  I felt like the luckiest mom in the world. 

It's encouraging to know that beneath that layer of fogged exhaustion, my bubbly, smiling, cheerful little guy is still in there.  It gives me hope that if we can figure out the right combination of treatments someday to finally bring his seizures under control, maybe those glorious days where his genial personality emerges will become the rule instead of the exception.  And while we can't do anything about the permanent toll that the seizures have had on his body, I'm amazed all over again at the astonishing resilience and bravery of my child.  He's doing the very best he can with what he's been given, and on his good days he's well and determined to cram as much laughter and joy into every second he's awake. 

He fell asleep smiling last night.  I'm pretty sure I did too.

~Jess

 

You can find Jess daily at her blog, Connor's Song.

 

 

Stories by Heart

When she was two, before we realized Pudding had any problems communicating, she would recite entire books.  She had her favorites, and would ask for them night after night.  I have Corduroy, Where The Wild Things Are, Madeline, and a few others etched into my memory too.  Sometimes I still recite them when she gets overwhelmed, the words are calming to both of us- a shelter from the outside world.

In those days, Pudding couldn't answer a yes or no question.  She was unable to make a choice- repeating the last offering, even if it was clearly not the thing she wanted.  Back then, echolalia was mysterious and scary.  It seemed like a real barrier to her language development.  I was disheartened by scripting, and longed for those precious snippets of spontaneous conversation.

Since then, I've learned to embrace echolalia as the way Pudding learns language.  It isn't an easy way for her, but this is what she has.  Working with her is the only way that feels right.  Her language skills continue to improve; not in the giant leaps we'd prefer, but in its own way, like just about everything about her.  We'll take it, gladly.

Though we've added some new books here and there, Pudding still sometimes enjoys to read those old favourites from time to time.  Because she knows them by heart, sometimes she'll read them out loud to herself.  Yesterday chose Corduroy.  A clear favourite from her first birthday, when "De Cordugee" was her nightly request.  Her very first special interest.  She read, using the same intonations as me.  The story is so soothingly familiar, I was lulled into a kind of trance.

I snapped out of it, when she suddenly turned to me and said,

"Mummy, Lisa wants to buy Corduroy from the store.  She needs money."

It occurred to me that in all this time we've read, and re-read, and recited that book, she didn't understand it until now.  I knew she was only reciting, but for some reason I never thought about explaining the story to her.  I'm not even sure she would have wanted me to.  When I would ask her questions about her stories, she would refuse to answer, and get mad that I'd deviated from the script.  She always seemed content to look at the pictures, and listen to the collection of words that always stayed the same.  No doubt a pleasant haven from the tortuous conversations with real people that most be bewildering and overwhelming to those with auditory processing difficulties.

Not so long ago, she would just keep asking and asking for something that we'd run out of, not understanding that I couldn't make it appear at will.   Now she is letting me know that "we have to get some from the store," and while there, "we have to pay for it."  Echolalia?  Perhaps.  But she is learning and using these phrases appropriately.   She is applying them to her old favourite stories that she can now appreciate on a whole new level.  I see that she is understanding more and more about this complicated and mysterious world.

Books might always be her refuge, but now she can appreciate them in a different way.  She can even deviate from the script once in a while.  Maybe this is the start of a new chapter in Pudding's story.

Spectrummy Mummy blogs most days at http://spectrummymummy.com and tries to make sense of the world on Facebook and Twitter.  Books are her refuge too.

Tuesday, October 18, 2011

Soul Mate

Every night for fifteen years, I’ve tucked my son into bed. Until recently, I would read to him, say a little prayer, offer an “I love you,” then off I’d go. Ever since he started high school, he has asked me to stop reading to him, and he’s taken over prayer time. His prayers are dear and interactive, and off the cuff – the kind I’m sure God loves and hears best. Not a wish amongst them, mostly gratitude. He’s even taken to initiating the I love yous. For years I offered mine, without expecting an “I love you, too,” back from him. Eventually, and sporadically, he would respond in kind, but like everything with him, unpredictably.

Last night I was just about to walk out the door and he said, “I love the mom you are to me.” Since being the mom I am to him takes approximately 90% of my time and attention, that’s about the nicest thing he could ever say to me.

I’ve heard it said that soul mates are not necessarily those with whom we instantly click, and everything is just blissful when we’re together, no, soul mates are those with whom we’ve travelled the furthest and longest on our soul’s journey. They are often the ones that push our buttons the most, and with whom we have the greatest conflict – they are for sure our greatest teachers.

I love being the mom to my soul mate.

Monday, October 17, 2011

Closer to Fine

I have just returned from my first overnight away from all three kids.

That, in itself, was huge for me, considering my youngest is about to turn three.  I have been away a few times before, but always had at least one kid with me, so this "being alone" stuff was new to me.

But the really huge part of it all was that I was with a group of other autism moms who understood how monumental this was.  They knew this wasn't an easy escape for me.  I spent a lot of time waivering during the week : I can go. I can't go.  I can't leave them.  I have to leave them. I have to leave them but I can't leave them.

And each time the response was: You must come.  But if you can't, we understand.

I went.

I've written a lot about the comfort level of being with other people who "get it" - the people who understand the tremendous highs and lows of this special needs parenting rollercoaster.  And I've written a lot about how important this village is to me in helping me get out of bed in the morning and face the day.

But what I realized this weekend is that most important thing these women give me is the ability to be myself.  There's no need for the pretenses of "yup, yup, everything's fine" when I'm with these friends because they know that everything isn't always fine.  I can just get it out there and let it hang.  No judgment, no condemnation.  Because it's followed up with a "when that happened to me" and a "I know, that is so hard". 

These are women who are changing their corner of the world every day.  Some on the public stage, some more privately.  They do things that make the world a better place just by opening their mouths and speaking their minds.  Whether it's being a part of their town's special education advisory council or talking to their kid's class about autism or running a marathon, they are all incredible advocates for their children and the children in our community.

They have taught me that crying is not a sign of weakness, but a sign of strength and conviction.  They taught me that while laughing may not the the appropriate response, sometimes it's the only response. 

And most importantly, if I stay true to who I am as a person, I too can change my little corner of the world.

When I arrived at my friend's house, I was greeted with a smile, a margarita, and a "how are you doing?"

I'm home now and looking ahead to a most difficult week of meetings and milestones.

Tonight, I am raising a glass to my these friends.  Thanks to you, I really will be just fine.

"I'm trying to tell you something about my life
Maybe give me insight between black and white
The best thing you've ever done for me
Is to help me take my life less seriously, it's only life after all
" - Closer to Fine by the Indigo Girls

(and a big thank you to my husband and mom who stayed home with the kids so I could go.  Behind every mom who gets a break is a person who loves them enough to give them one)

 

Alysia Butler is a stay at home mom to three boys, two who are now diagnosed with autism spectrum disorder.  When she's not wondering how she got so lucky, she writes about her kids and other things at Try Defying Gravity and on twitter at @trydefyinggrav.

 

Sunday, October 16, 2011

See

Reposted from Farmer John Cheese and Other Joy, October 2009:

 

Pinprick slanted rain spears serve as a smoky filter, not exactly obscuring view, but at least smudging the edges of forms. After picking Addie up from school, we are close to home at an odd intersection at the end of a triangular shaped block. Pedestrians and drivers alike have an extra direction to monitor before proceeding here.

 

I pull up to my stop sign and make out through the rain a striped hat on the head of a young girl. Her backpack and lack of umbrella lead me to assume she is a high school student heading home, too cool for protective rain gear. The rain spears let up a little. Her striped hat is a woolly home-knit look, extra bunches of material piled and folded on top, her ears fold downward under the band. She holds her curly-haired head perched on a bowed neck, the way tall people sometimes do so as to not appear as tall. I can see her lips moving. She might be talking, but no one is with her. Maybe it's because of the rain, but her clothes don't seem to fit quite right. They hang as if she left before completely finishing all fasteners.

 

On her round, pale face, her eyebrows strain to meet each other, apparently knit with concern or concentration. I had never seen her before, so maybe this is a natural expression. The girl pivots her head from side to side while her lips move. I think she is checking to safely cross, but the consistency and repetition of the pivot inspire some doubt as to a functional purpose for the movement.

 

I wait for her to make eye contact so I can assure her that I would not blow the stop sign, that she is safe to cross. She stops. Seemingly without even noticing my car nearby, she turns in a slow circle. Did she drop something? When the circle is complete, she takes a step into the street, only then realizing my idling and still car in front of her. I smile and wave her through, carefully cheerful to make it quite clear that no impatience is intended. 

 

She stops again, right in front of the car. Just past the hood of my car, her back straightens, neck extends, her eyebrows release themselves, with her eyes meeting mine for a moment. Her hand begins to reach up, but she swiftly brings it back to her side and completes her street crossing in front of me. I watch her until she arrives at the other curb.

 

As I begin to turn my attention to my own safe crossing, the girl turns back a number of times, shifting her head and craning to get a good look in the car. At me. She wants to see me.  I don't know if Addie is watching from her car seat.  She cannot tell me as her communication device battery is drained from school and I have not be glancing back to check for sign language.  As if on cue, she kicks the back of my seat, shooting the gangly tough roots of another painful truth through my understanding.

 

This girl in the striped hat - a young woman that should be on the cusp believing that the future belongs to her, that the possibilities are endless, without a gray hair on her head, without a line on her face, without a failure under her belt - she is already accustomed to moving through the world unseen. I surprised her with the simple act of acknowledging that she requires the courtesy of a safe crossing, with this small connection.  She did not know what to make of it.

 

There are humans among us bearing, adapting to, and accepting a state of invisibility. I am deeply ashamed of all the hundreds of times I have could have witnessed, acknowledged, heeded, times I could have extended my human-ness to meet another's...but because I could not readily accommodate the differences, I did not.  I chose instead, not to see. 

 

I am sorry. I will choose it.

 

I want to see.

 

http://farmerjohncheeseandotherjoy.blogspot.com/

Friday, October 14, 2011

Taking A Break

I’ve been lucky to have avoided the issues plaguing some of my friends in this sandwich generation of ours.  In the past year, two of my good friends have had their fathers pass away, and one of them is now managing her mother’s care, from housing and finances to dialysis and medical appointments. This friend also has a two year old.

But like I said, I’ve been lucky. My parents are in good health. My dad still is still a full time practicing physician (if a bit ornery about the conversion to electronic medical records), and my mom just this year gave up her job working at a preschool. After the difficult years caring for my brother while he slowly passed away, they are finally back on their feet with an active social life (way more active than mine), new hobbies (Mah Jongg for Mom, fly fishing for Dad), and some time to travel.

I suppose I should say they were back on their feet. My parents just got back from a three week vacation to France, cut a couple days short when my mom fell on some marble steps and broke her ankle in three places. After a visit to the ER in Versailles, a very long trip back to L.A., and surgery, my mom is now decidedly not on her feet for at least four to six weeks.

So I left my husband and kids behind to help. I was gone for five days, the longest time I’ve been away from the kids. I left right in the midst of trying to sell our house, looking for a temporary place to rent, aforementioned house sale falling through, my husband’s company on the verge of a big announcement (not necessarily the good kind), and all the regular stuff that goes along with having a two year old and a four year old with autism.

Although I was worried about my mom, and knew she would need a lot of help, I have to admit I jumped at the chance to get away for a few days. A few days away from the whining. A few days away from guessing what the kids might eat for dinner that night. A few days away from thinking about home prices and mortgage rates. A few days away from wondering if tonight we’re going to get a full night’s sleep. A few days away from dirty diapers and laundry and packing lunches and getting dressed and off to school and therapy and music class and playdates and just, well, all of it.

And I got that. Yes, I had to help my mom get around. But she could hold a conversation that didn’t involve Dora. And yes, I did some laundry, but for people who said thank you. And I made dinner every night, but it was for people who actually ate it and also shared a bottle of wine.

But you know what else? I missed my family. A lot. I ached to hear my daughter’s “Good Morning, Mommy!” I longed for my boy’s giggles. I missed having my husband next to me at night, even if our sleep isn’t always so sound. And I even missed our daily routine, the hurried pace of the morning that gives way to a lazy hour after Moe leaves for school, and I finally have my first sip of coffee while my daughter watches Dora in the other room.

My life is chaotic, but it is my chaos, and I've come to love it. Though I do admit: I did not miss the whining.

Thursday, October 13, 2011

Upgrades

I'm posting this late because, like so very very very many people, I've spent much of the past two days trying to upgrade all my Apple devices, staring at one little bar after another as it moved slowly across the screen. It took forever for the iOS software to download, then to go through all the various lengthy steps to upgrade my iPhone, only to ... hiccup! lose a connection at the last minute and go through a scary restore process that had me imagining all my data lost. Tried it again, tried it again, tried it again ... you know the drill. You were doing it to, right? Which is why the servers kept dumping me.

And then, of course, after finally getting the operating system on, came the repeated efforts to transfer my Mobile Me account to the cloud over the same swelled servers. And then, wait while a glitch stopped my mail from downloading, repeatedly denying a password I knew was right. Got things set up finally only to realize that to fully take advantage, there are multiple other devices that need the upgrade. And pretty soon, there goes the week.

So while I was in a constant state of upgrade-juggling when I should have been blog writing, it occurred to me that upgrading these devices is not unlike raising children with special needs. No, really, stick with me. What is the therapy and the education and the work we do but an attempt to upgrade our kids? And how often does that go smoothly, quickly, bam! expected result? More often, it's trying and trying and hoping and expecting and just when a breakthrough's in sight, some neuron doesn't connect and then you're trying again, repeating the process, hoping that finally, finally, the connection will be made.

And then, that connection requires another connection, and another, and another. Each with its lengthy, risky, fingers-crossed time of anticipation. Will we get a result that's a more fully realized version of what we had before, or will there be a crash, a fallback, a glitch that sends us scurrying to put everything back together and find another way.

Like a major software upgrade, our children's developmental milestones are exciting and satisfying and much sought-after, but never really the perfect solution we expected. There's always something that could be improved, something that's less easy to handle than advertised. And though we dread the next period of upheaval, that's always where our hope lies.

My kids, now a high-school senior and a college sophomore, are pretty state-of-the-art right now in their developmental trajectory. They're doing a lot of really, really cool things, stuff I'd never have dreamed of when they were little and I only used phones that plugged into walls. But even now, there are glitches, problems to solve, weaknesses to tweak. It's been a heck of a push getting them to versions 18.7 and 21.6. That next upgrade? Working on the features right now.

 

Terri Mauro blogs at About.com Parenting Special Needs and Parenting Isn't Pretty. She has two terrific kids, a 21-year-old with learning and language disabilities and an 18-year-old with FASD, both adopted from Russia in 1994.

Yin and Yang Exists in Everything

Balance within ourselves and our environment is key to living a happy and healthy life. This belief is deeply rooted in Chinese Medicine theory and the philosophy of Taoism.

It all began 8000 years ago with the idea of yin and yang which pre-dates recorded history. At that time a legendary sage named Fu Hsi, lived along the Yellow River of China. It was Fu Hsi who formulated the concept of yin and yang. Through his observations of nature, he came up with two symbols, a broken line and an unbroken line. These symbols represented the two major forces in the universe and was named yin-yang. It is a familiar symbol that expresses constantly changing interactions. The symbol refers to two complementary concepts which include the relationships of: dark and light; dynamic and inert; creative and destructive; obvious and subtle.
 

Yin and Yang reminds us that seemingly opposing forces are bound together and interdependent in the natural world, giving rise to each other in turn. 
The basic premise of yin and yang is the notion that the only constant factor in the universe is change. Nothing remains the same; no disease, no condition, no emotion, no treatment or diagnosis. Everything is constantly changing.

 Yin represents that which endures, nourishes and supports growth. It also refers to something contracting and moving inward, such as calm rather than activity. Not surprisingly yin also represents the female while yang represents the male.
 Yang is considered to be all creative and generating; developing and expanding.

Here are a few examples:

Yin:

Earth

Autumn

Dark

Female

Left

Low
 Moisture

Yang:

Heaven

Spring

Light

Male

Right

High
Dryness

Yin and yang are not static concepts. They are constantly influencing each other. There is always some element of yin within yang and vice versa. Look closely at the picture of the Yin and Yang symbol and you will see the dot of Yin within Yang and the dot of Yang with Yin.

In Traditional Chinese Medicine, yin and yang refer to energies and functioning modes of organs and body functions. Your healthy state is created by the right balance of yin and yang. Therefore, it is advisable to make choices that contribute to balance in our lives.

Wednesday, October 12, 2011

What happens in a year

We just celebrated Emma's 4th birthday.  One the days leading up to the celebration I was a bit overwhelmed with emotions.  When we first learned of Emma's diagnosis of cerebral palsy and deafness I had thought that with therapy and her cochlear implants that she would be very close to her typically developing peers by her 4th birthday.  I'm not sure why I was focused on her 4th year as the one where I thought she would magically be "typical" but for some reason I was and as the day came closer it was very evident that she is not a typical 4 year old.    

Each birthday I put together a photo slideshow of the past year, set it to music, and play it over and over again for the girls.  It's a great way for us to remember how much fun we had over the year and how much the girls have grown and matured.  I was a little apprehensive going into this year's slideshow but quickly found out my apprehension was unfounded.  Emma had a fantastic year!  She stared crawling with her crawler, commando crawling on the floor without assistance, took her first steps with her gait trainer, started riding her very own adapted bicycle, took a trip abroad and enjoyed the adventure tremendously, started giving us a consistent Yes/No response (when she wants to that is, she is still only just 4!), worked on learning to drive a power chair, and started using the potty whenever I remembered to use it!  

How I lost focus on all these accomplishments as we neared Emma's birthday I do not know and I'm so glad that the act of putting together her video slideshow made me realize how very happy I am that Emma is not typical - she is truly a remarkable little girl and a daily inspiration to me to keep a smile on my face and embrace each day to the fullest no matter what obstacles are in the way.  

Today I know that we are not where I though we would be when Emma was turning 4; rather we are better than I thought.  Our family is strong.  We have met some wonderful friends and embarked on wild adventures.  I feel so very lucky that I get to raise such a remarkable little girl.  She has truly taught me so much in her four years, more than I ever could have imagined.  Happy Birthday, sweet Emma!  I look forward to celebrating many more with you!

 

Kristina blogs about life, love, and raising her family here where she has a post that includes the year in review video slideshow.  

Tuesday, October 11, 2011

Revolutions

rev·o·lu·tion   noun \re-və-lü-shən\

a : a sudden, radical, or complete change

b : a fundamental change in political organization; especially : the overthrow or renunciation of one government or ruler and the substitution of another by the governed

c : activity or movement designed to effect fundamental changes in the socioeconomic situation d : a fundamental change in the way of thinking about or visualizing something : a change of paradigm <the Copernican revolution>

e : a changeover in use or preference especially in technology <the computer revolution> <the foreign car revolution>

The definition of revolution from good ol’ Merriam-Webster dictionary touches only the tip of the iceberg of political activity.  I’m not just talking about the recent occupation of Wall Street, or the death of Steve Jobs.  I’m talking about all of us out there living with family members with disabilities who are trying to think about and visualize a world that includes them in profound ways.  I recently read a great academic article by renowned anthropologists, Rayna Rapp and Faye Ginsburg; their recent studies focus on families with non-normative children and how these families refashion their expectations and daily lives.  In Rapp and Ginsburg’s essay, they mention the 2010 Shut Up About Your Perfect Kid by Gina (Terrasi) Gallagher and Patricia (Terrasi) Konjoian.  I’m sorry if all of you have already read this book, but I just discovered it. So far, I’ve just made it to the authors’ website to check out the irreverent revolution these two sisters are part of around disability rights.

 

If you have read the book, I’m curious what you thought. And I’m curious if you too feel part of a quiet (or not) revolution that reverberates not only through your private family life, but also with your friends, school, church, larger community?  While I'm not sure I would call my daughter "imperfect"--I do appreciate the slap in your face humor that Gallagher and Konjoian are trying to use to get us to rethink what is “normal” when it comes to our children.   I don’t want perfection, but I do want a revolution.  As Rapp and Ginsburg argue: “If social mores once dictated that family members with disabilities be hidden from view and stories about them silenced, our research strongly suggests that this cultural script is being revised on a daily basis, creating a seismic sea change felt across multiple locations.”  Let’s keep rewriting the script! 

Kirsten works as a professor of Communication Studies at the State University of New York and is the mother of 5 ½ -year old twin girls.  She believes her work as a teacher and parent are vitally important to fostering active and engaged citizens of the world.

 

 

 

 

 



Looking Down the Road

A few things in my life have been tapping me on the shoulder lately, asking me to please pay attention to the long view; looking down the road toward what my son Jacob may need in about a dozen years when he will ostensibly be an adult, or something like one.

We can’t know what life has in store for us, what twists and turns may lie ahead, with anything near certainty, but with each passing year that my son Jacob remains clearly on the autism spectrum, the prospect of him moving into the mainstream fades further and further from my radar.

And it hurts. It hurts my head and my heart to stand in the middle of the path Jake is currently on and calculate, clear-eyed, his trajectory, seeing it landing him square in the realm of needing some sort of minding or looking after... for the rest of his life.

Now, my son Jake is in a funny category. I don't love the labels, the ranking and quantifying. Because it leads to a certain reductivism, a tendency to see the traits, the diagnoses, and not the whole person - my wonderful son - who is so much more than the sum of his parts. But sometimes it helps when talking about these things to say: my son is mid-high functioning.

High-functioning in the ways he has spoken language, constantly attempts to communicate, actively engages with others and has a tremendous amount of social desire.

"Look, Mommy," he'll say, “I’m petting the kitty!” wanting to share his world with me.

But still, he is mid-functioning in how much of his language is still often scripted and repetitive, in how much of what he is hearing he is not comprehending; his language processing deficit rearing its ugly head time & time again.

And while he understands much about his immediate, concrete world, as soon as abstractions are introduced he is quickly lost. Language based as they all are.

Ask him a why question and you get a tautology:

"Why are you crying Jake?"

"Because I am sad."

"Why are you sad Jake?"

"Because I'm crying."

But the biggest concern of all is how little he understands of how the world works, and thus how undeveloped his ability to safely navigate in it.

Jake’s twin, at 9, doesn't always exhibit complete safety awareness when crossing a busy city street, but he's working on it. And he knows the elements involved, can rattle off what he should be doing -- waiting for the walk signal, looking both ways, watching out for turning cars, etc. etc.  

Jake on the other hand, still seems to not know the difference between the sidewalk and the road, has no awareness as to there being a threshold crossed from one to the other. I must have pointed out the red stop hand and the white walking man of the crosswalk signs a hundred, a thousand, a hundred thousand times, and still he cannot for the life of him remember what they are supposed to communicate, why they should matter to him.  

I could give a hundred other examples, but let's just say that while I expect Jake to grow and change, develop significantly, and blossom forth, unless there is a whole order of transformation about him - let's say future nanobots that can hook up the disconnected neural pathways or whatnot - we're looking at some sort of lielong support sytem for him.

And this is where I quake in my boots.

Because the infrastructure to support that, for the MASS of kids who are going to need it, from the autism explosion that has manifested in Jake's generation?

Is simply. not. there.

I have a friend whose brother is autistic and in her charge, as her parents are both now gone. Her brother is living in a wonderful place, a small group home run by a dedicated staff. It is stable and intimate, and they function like a family. The residents venture out daily to jobs or day programs; there are outings: nature hikes, bicycle rides, movie nights, ice cream runs.

Wonderful.

But not wonderful.

Because my friend's brother had to wait 10 years on a waiting list to get in. And he's 42. Of the 5 in 10,000 generation.

There are a few handfuls of wonderful, appropriate settings for mid-functioning autistic adults; allowing them to live in supportive communities, nearly, but not fully independently. 

And now, it is our job as the parents of young autistic choldren to see that those grow a hundredfold, a thousand-fold, so they will be there for our kids who will likely need them.

And if you help to build a network of terrific group homes and your child ends up being one of the lucky ones, able to function fully independently in the world without support? You have done a wonderful thing for your community.

And if you don't act NOW? Your child may end up homeless on the street, in jail, or worse. Because while you think they can live with you forever... are you really going to live forever?

So yes, this started as a personal meditation on my son's future and ended with a call to arms.

Because in about ten year's time a whole generation of autistic adults is going to be aging out of their educational support programs. Many of them will be bright and personable enough to get jobs, but perhaps not be able to manage finances, or keep up with the many maintenance tasks of daily life.

And where will they go? Where will they go?

Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.

p.s. Sorry my post is late. My usual day is the 10th, but my 89 y.o. mother fell and ended up in the ER yesterday morning, with what turned out to be a fractured rib, and I finally got home at 5 AM today.



Thursday, October 6, 2011

i have iEverything iReady...

At the end of this month, we are getting in an aeroplane and flying across the Pacific for 14 hours. Trapped in an airtight tube potentially containing babies. We may be nuts, but San Diego Zoo (Billy's spiritual home, in his mind) lies at the end of that trip (give or take an extra bit of road tripping) and so… we are doing it.

We are not just taking this trip because Billy knows every inch of San Diego Zoo thanks to Google Earth. Though that is definitely a bonus. We are taking this trip because we can.

It’s been a long road to get here and we have a much longer road ahead. At the end of this month, we take a pause, and have a holiday.

Billy is almost eight. In fact he will turn eight at Disneyland (we have been told not to disclose this to Disney staff lest a legion of suited characters and their minders insist on singing ‘Happy Birthday’ in his face, repeatedly, all day). He is also autistic.

We are fortunate in so many ways because Billy has developed a legion of helpful skills.

He has language (some of it hilariously idiosyncratic, a lot of it direct from TV, a bit annoyingly memorised from things we have said). In fact today, he has revealed to me that he has memorised the entire Smurfs movie. Yup. All of it. Sound effects, voices, music. Everything. It was hard enough in the cinema… now I’m hearing it in my house as well.

Billy is also incredibly loving. He has an astonishing memory, a gift for spelling/reading and a wicked sense of humour.

He also has debilitating hyperacusis, severe sensory processing disorder, chronic constipation and reflux, and some bizarre as yet unnamed auto-immune related thing that makes him react very badly to some medications.

We, like everyone here, have spent our parenting lives learning and accommodating and researching and crying and tolerating and advocating and experimenting and begging and trying very hard not to punch people. There are many, many good moments and there have been many deep lows.

There have been many days when we have not felt good about leaving the house. There have been many can’ts, won’ts, don’ts and mustn’ts. We’ve hugged him through horrific hospital stays and we’ve cried with him when he’s been hideously misunderstood. We have worked on aims and goals and outcomes and small, manageable steps. A lot. Over and over. The goalposts don’t go away once you’ve kicked the ball through, they just move to a new spot.

Approaching his 8th birthday, we feel ready to take a giant leap into the great beyond. Or at least into a long haul aeroplane.

And here is where I must thank the recently departed Steve Jobs, and all those on his peofessional journey.

Our carry on luggage may as well have an Apple logo on it. It will contain an iEverything. Phone, Pad, Pod and a MacBook Pro for all of us. We have begun loading these devices with all sorts of distractions. We have attached these devices to various prototype noise cancelling headphones. We fantasise about these devices being in the hands of the adults while the child gently sleeps or happily engages himself.

We can dream, right?

Actually, you know what? We can. And here’s why I say that with something approaching confidence.

This year has been tough for us, but in the toughness we have discovered something very positive. That something is this…

If we create circumstances where our child is not feeling threatened, overwhelmed or exhausted, he is incredibly capable.

Things that threaten, overwhelm or exhaust him are many but include lots of noise, lots of kids, lots of social activity, lots of spoken language and a distinct lack of escape clauses. AKA - school. By choosing to educate him at home (a choice I totally accept would not work for everyone), he finds the space to take on academic work at an age appropriate level.

I’m working on that experience translating to our adventure 30 000 miles above the Pacific.

I so want him to have a good flight. I so want us to have a good flight. I sooooooooo want those around us to have a good flight, and if ‘those around us’ includes a person under 3 years old (give or take) then we need all the big guns we can get (bad phrase for an aviation adventure)… we need all apple products we can get.

Once we are on the ground, and past the jet lag, I’m thinking we will be OK. As long as he’s with us, he’s a fairly happy camper. Also as long as there are French fries, carrot sticks and water, he’s all good. Add giant pandas and cheetahs and nirvana is close.

I feel slightly less confident about myself and the flight, to be honest. Being an Irish, ex-Catholic migrant, I have a close relationship with the worst case scenario. I will need some assistance to banish thoughts of deep-vein thrombosis, terrorists and crashes from my mind.

Thankfully, I’ll have a legion of branded electronica, and no excuse not to have a drink or two.

 

 

Valerie’s increasingly random ravings can be found at Jump on the Rollercoaster.

Tuesday, October 4, 2011

The language of love

(Image from Photobucket - cryingbabybrowneyes) 

What's in a name?

That which we call a rose

By any other name

Would smell as sweet”

- -Shakespeare

I disagree with the bard on this.

There is a lot in a name

For  words mean things

A rose called by some other name – would not be the same. 

For instance, if we started using the word “tomato”, instead of the word “rose

( just try it out for size, as in – “My husband gave me a  dozen tomatoes for our anniversary” – and you will know what I mean.

Even If you add the disclaimer – when I say “tomato”, I really mean “rose”)

Soon the way we experience the rose, will be imbued with tomato-feelings

For this reason,  I have simply loved the way in which the special needs community has united against using the R –word

( A brief explanation for readers who are not in the special needs community. The word “retarded”- which is thankfully slowly going out of business -  is deeply hurtful to our community. It uses a diagnostic term for a disability,  as an insult. Plus, the word is also used to deride kiddos with special needs. Same with phrases like “rides the short bus”. Very hurtful when your precious baby, in fact, rides that bus )

It really is wonderful that the special needs community has come together to ask for respect in the language that is spoken to us.

But I think there are two other places that we need to be very careful with language.

The first, are  the  words we use to ourselves to talk of our children .

Even the language of our inner dialogue

For instance, I never use the word “normal” to describe kids who don’t have special needs. I use the term “Neurotypical”( as in “Neurotypical kids  are so charming”).

When asked what this means – I will usually reply that neurotypical means “non-autistic kids” or “typically developing” kids.

I will carefully skirt around using the word “normal”

For if I did – I would by default  -be describing my child as abnormal.

And he is not.

He is just …..not-neurotypical.

But  the final and most important aspect of language, is about the   words are we choose, when we speak of  our  children in their presence

I  think about the word – “disabled “–

I say it in my head- dis- abled 

While there is nothing inherently wrong with the tern , I much prefer person with disabilities 

But the word disabled? I imagine what it would be like to have that as part of a vulnerable little child’s self concept from the very beginning.

Not good.

Then I think about the word differently –abled

Well, that  feels completely different

Its not about being PC.

Its about something infinitely  deeper

Its about self concept and identity

I think some of the  best gifts we can give our children are about how we make them feel about themselves

How  we look on them with adoration and  how we speak of them in a language of love

Sometimes it is necessary
to reteach a thing its loveliness,
to put a hand on the  brow
of the flower
and retell it in words and in touch
it is lovely
until it flowers again from within, of self-blessing.

-Galway Kinnell

This post has been written by Floortime Lite Mama who blogs about her life and her adorable  6 year old child with autism here.

 

Saturday, October 1, 2011

Crack

“There is a crack in everything. That’s how the light gets in.”
~ Leonard Cohen

Most days I feel pretty good. I’m on top of things. I’m organized. Everyone said things would be easier once the kids got a bit older. Mostly I have a vague recollection of these being people who did not have triplets. There was a brief lull in time where I did believe that was true, and we seemed to be coasting along on a nice wave. It got tough again, then it calmed. Lots of amazing therapists helped, so did the occasional glass of wine. We rely on humor, and that gets us through quite a bit. The not so good days seemed to be drifting farther behind us. But lately it feels like the bad days are creeping back in, and time for recovery from the down side is getting squelched. Today it felt like they were taking over.

We are in the process of obtaining behavioral services for our son, and our daughter, who had intensive behavioral therapy last year, has started having more sensory and processing issues again. Last time I wrote about the noise. I missed the signs of her ramping up to this. Between then and now it has started to feel like no amount of wine or chocolate could possibly take the edge off days with multiple meltdowns, grunting and shrieking instead of talking, and endless spinning in circles to feed her vestibular system. I actually cried tonight. I felt like I was going to crack. And it takes a lot for me to get there. But here I am. Banking on humor, I allowed the corner of my mouth to lift slightly as I told my husband I am planning to willfully become an alcoholic. I am not an addictive person, and I know that isn’t funny to many people. But in that moment I was willing to trade how I felt for how the latter might feel because I was overwhelmed and wanted an escape.

I am so very grateful for my husband. We bail each other out when it gets rough, and he bailed me out. I feel like the world’s worst mother if I can’t manage a conflict between my own three year olds. But this isn't just a conflict. I try to remember that the issues are neurological and not always situational. I try to take my own deep breaths and count to 10. But when I lose it, or yell, or have to walk away, I am left with a feeling of regret that I cannot enjoy my children. It breaks my heart when I can’t find a way to reach them in the midst of their anxiety. It breaks my soul when I realize my limitations, and I feel selfish for being limited. I know it will pass, like a teacup that has broken and been repaired. But I will be tea-worthy again, ready to have more poured in. You’ll only see the crack if you look closely.