Noise in the Good Seats

Our son's vocal tics are often severe. During a recent flare, we decided not to attend a play we were planning on seeing. Twice recently, at different concerts, I have asked the person in charge if it is okay for us to sit in empty box seats. We didn't want other paying customers to be distracted or disturbed by Seth's noises. And we didn't want anyone to turn and glare at him for something he can't control. 

On each occassion we were met with understanding and compassion. Our kids felt super cool getting to sit up high, away from the crowd. 

Kids with special needs offer the general population opportunities to demonstrate kindness. Most of the time, people rise to the occasion. 

With so much seemingly wrong in the world today, it's little things like this which make me feel hopeful. 

 

Michelle O'Neil is author of Daughter of the Drunk at the Bar. She's written for many publications including Literary Mama, two special needs anthologies, a professional journal for occupational therapists, and her radio pieces have aired during NPR's Morning Edition in Washington, DC. She has an 11 year old daughter with Asperger's and a 9 year old son with auto-immune issues which appear to be PANDAS. She blogs at www.fullsoulahead.com.

 

The Grinch Who Stole Nick's Christmas

Nicholas and I are at it again.

I am in clean house-ivity mode, anxious to get things done and put things away.

Nicholas is still in the holiday mode.

He loves to watch the warm, colorful lights on the Christmas tree. He delights in lighting the candles in each window every night. He enjoys living in a house filled with decorations. If it were up to Nicholas, Christmas would never end. Holiday lights and magic would continue throughout the year.

But this month my need to control clutter has escalated. I am starting to notice a trend. It seems that when I receive difficult medical news or another new diagnosis for one of my children, my pathetic need to control "something" in my life goes into overdrive. I go on a cleaning rampage.

Nicholas, seems to instinctively understand this quirky characteristic in his mother, and goes on high alert.

He becomes the Decoration Detective of the House. Throughout the day, he makes his Christmas patrol around the home to ensure his wacky mother has not hijacked any of his holiday cheer. He carefully counts the lights in the windows and the ornaments on the tree, performing a careful inventory inside his little head.

I, on the other hand, have become more like the Grinch, tip-toeing through each room removing the bamboozles, the woozels, the clumtrumpets and trains.

Today, I see Nicholas distracted in the living room, and pounce on my chance to de-Christmas the house.

I hug our life-sized Frosty the Snowman and head up to the attic, quietly climbing the stairs to carefully hide the white plastic man from my adoring young son.

"Mummy, what are you doing?" I hear Nicholas shout from the living room.

"Oh, nothing...." I say and kneel on the steps. I try to become more quiet but bang my head on Frosty's giant mittens instead. Like a bullet fired from a gun, Nicholas climbs the stairs to investigate.

"Not my Frostyyyyyyyy!" he screams and starts to cry.

Fat tears fall from his eyes like rain.

"Mummy, you can't put Frosty awayyyyyyy!" he says as if I am sentencing our chilly friend to a lifetime of hard labor.

"No Mummy, pleeeeease!" he says, and now I too feel like crying.

"Wait Nicholas, I have an idea!" I say and immediately he stops crying. Once again those four little words have saved my life.

"Why don't we put Frosty in your room! That way you can still be near him. He can watch over you when you sleep! What do you think?"

And like a happy switch has flipped on in his brain, he immediately shouts,

"Yeah!"

"Oh Mummy, that's a great idea!" he shouts.

I carry poor, old Frosty back down the stairs and place him at the foot of Nicholas's bed. As I plug him into the light socket, Nick smiles and jumps onto his bed. He lies back and is immediately mesmerized by the cheery face of the watchful snowman. He is happy.

"Nicholas, I am going to put some of the other Christmas things away now." I say delicately to my son.

"OK, Mom," Nick says agreeably.

The warm glow of the smiling plastic man has relaxed my anxious son. Like a powerful sedative, it has calmed him.

I too am suddenly mesmerized by the vision of the tall silent snowman standing at attention by the foot of my son's bed. But this vision seems familiar to me. What is it? I think to myself. Something standing watch over my son......? And suddenly I remember the words from a story I wrote shortly after Nicholas was born,

 My son lay limp upon his hospital bed. A yellow feeding tube was taped harshly to his soft cheek; it traveled up his nose and into his stomach. To his soft skull another plastic tube was taped, pumping antibiotics into his fragile veins. Around his floppy body, a brace made out of thick straps and stiff Velcro held his weakened hips in place. Feeding machines and intravenous poles surrounded him like quiet metal soldiers standing at attention. Everywhere, alarms sounded, a constant reminder that this was hell and we now lived in it.

(To read the story in its entirety, click here)

As I see the quiet snowman standing at attention at the foot of Nicholas's bed, my eyes start to water.

I am reminded of his infancy when instead of joyous snowmen, metal feeding pumps and tall IV poles stood watch over my fragile child. And although Frosty the Snowman may now take up permanent residency in my son's room, I am thankful for this joyous new image. I am thankful for Nick's health, his strength, his love for life.

My desperate need to clean the house is suddenly over.

My curse has been broken.

"And the Grinch found the strength of ten grinches, plus two"

 

To read more about our family adventures, please visit us at www.onalifelessperfect.blogspot.com.

 

Another Conversation with Oscar about PWS

Every few months my son Oscar and I seem to find ourselves in a conversation about Prader-Willi syndrome and how it affects his life.  I've largely protected him from the scary information and try to frame any limitations he might encounter in terms of what he can do, not what he cannot. 

This morning, as he cozied up in front of the heater in his jammies, I should have reminded him to get dressed for school but instead I casually asked if he'd be interested in a sleep-away camp for kids with Prader-Willi at Camp Harmon this summer.  I think that conversation would have gone fine if I had not, in the very same breath, asked his 7 year old sister if she was interested in circus camp. Oops.  

Oscar's heard all about circus camp from our babysitters who are counselors there.  They've told him about the friendships and the art projects and the circus activities and the big show.  But what he remembers most about circus camp, I finally cajoled him into telling me, is that at circus camp you get ice cream as a reward for doing the dishes. Every night. Based on that alone he has decided that circus camp is for him.

I tried to tell him that I didn't see him being interested in learning to walk a tight rope or riding a unicycle or swinging from a trapeze high off the ground. 

I tried to tell him that I know he likes art projects, but that he also likes animals and basketball and that I was thinking about a camp that had those types of activities.

I tried to tell him that the Camp Harmon was like the family camp we go to every summer except that he gets to go with friends.

With tears brimming and lips quivering he asked why he had to go to a camp with all the "Prader-Willi people".

(I spent the next several minutes lecturing him on people-first language and not calling himself or letting others call him a "Prader-Willi" while he stared at me with a stunned look on his face.) 

And then I answered his question.

"Because, sweetie, at Camp Harmon they understand Prader-Willi syndrome and they know how to keep you safe.  Even if you went to circus camp you wouldn't be able to have ice cream every night as a reward for doing the dishes. Eating all of that ice cream would be dangerous and make you sick."

He formed a little circle with his index finger and thumb and said he'd be ok with only having a tiny bit of ice cream every night.  "I wouldn't need a lot, Mom, I swear."

He calmed down only a little when I reminded him that so many of the kids he looks forward to seeing at our fundraising walks, and support group meetings, and even yesterday at a middle school he was visiting have Prader-Willi syndrome and that many of them attend this camp. He smiled when I reminded him that Emilie and David and Owen would probably be there.  And he looked maybe a little relieved when I told him he didn't have to go to camp at all -- that I was only giving him the option.

I'd like to say this conversation ended elegantly but it didn't.  When I finally stopped talking sadness overwhelmed him again and the tears flowed harder.  So I tracked down his iPod, found his favorite Green Day album and plonked the headphones on his ears.  And I hoped that the abrupt transition to something he loves would distract him enough so he could get ready for school. (It did.)

We'll revisit this conversation again soon I'm sure. As Oscar heads toward adolescence he will undoubtedly notice more differences between himself and his typical peers.  He will have more questions. There will be more tears.

I am hopeful, though, that the opportunities he will have in life will always be meaningful and satisfying, even if not exactly the same as his typical peers.  I will insist.

***

Mary Hill lives in Berkeley, California with her husband and three children, ages 13, 11 and 7. She is actually blogging again over at Finding Joy in Simple Things.

Lowering expectations made me a better dad

The word “expectations” can be a double-edge sword for parents of a child (or children) with disabilities. The reason I know about expectations is that two of my three children have cerebral palsy.

 

Like other parents with 'multiples' I know a lot about creating expectations and letting them attempt to run my life. I know about letting expectations go. I know about finding new ones (then letting them go). At one time, I've even let them go and couldn't find them.

 

Recalling when I realized I was going to be a dad, my expectations were based in the future: idealistic, fantastical and how I'd be everything to my children that my parents were not. As I experienced the dream of parenthood go in another direction of fathering a child with disabilities, I had to found a way to let go future-oriented paradigms.

 

I thought of my life with this big, magic steering wheel, with the false idea I could totally control where it was turning. I'm not going drag down that winding road now, but know that letting go didn't happen until I was ready to be a father again, six years later.

 

After I accepted what kind of father I was – a pretty damned good one - I also began a long road of complacency when it came expecting a whole lot from my oldest daughter. I had let go so far that some of her at-home therapy regimens became too laborious for me.

 

I just couldn't find the energy it took to push my child and myself to do what was needed for her to “get her reps in” for supporting her work at school. I became O.K. with not having expectations while only supporting others with theirs.

 

Don't get me wrong, I never stopped being a great father and caregiver or loving her. I never quit taking her to do the things she enjoyed doing – walks in the woods, driving around aimlessly or just hanging out in her room.

 

I had become more of a traditional father as opposed to a 'special needs-all-therapy-all-the-time father.' It was important for me to put myself in that role first before I could move on.

 

This is the paradox of parenthood. It applies to all parents, but is magnified for parents like me. We make sacrifices for our children, but there's always a cost: ours or theirs. There are not a whole lot of choices in between.

 

It wasn't until a series (too many to list here) of 'unfortunate events' that happened to my third daughter that led to her cerebral palsy diagnosis that I would get a second chance to alter my fathering methods.

 

I have now learned that expectations have to be constantly massaged, reset and realigned in order to give my children their best chance at success. I can now feel when I'm going from one extreme to another, and I've found ways to settle on somewhere in between.

 

While now my outlook and energy has been refocused to provide more support to my children, they are the ones who teach me what to expect and what to believe in.' They show me what they can do, or cannot do, or when they need my help, and I'm O.K with that.

 

I once read on my very good friend's blog that “the biggest disability we have is low expectations” but in my experience the opposite also is true. Having too many expectations on myself or my children became a disability that I learned how to overcome.

 

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. 

On being different.

The topic of differences surrounds us.

From the time of the first diagnosis 11 years ago and so many after, we've been living different.

We're different from our circle of friends and family. Our kids are different from their peers. Different. Always different. It's come up a lot because now that our daughter is 10, it's becoming all too noticable to her that she is different. We didn't have these struggles with our son, well, because he has never really cared what people thought about him -- a trait that has and will serve him well.

For our girl, though, it's harder. We had a recent conversation when she got into the car after school and it very nearly broke my heart in two. I knew this day would come; the day she knew she was different and it wouldn't be the acceptance of the beauty in differences. 

Not unlike my daughter, I too had to learn to accept my own differences. As a parent to kids with medical, physical, and developmental disabilities, I've spent a lot of time adjusting to the differences that come along with having this life.

I've adjusted my own dreams and made new ones. I've lost friends because of the differences in our family -- I've cut loose friends who were judgemental and I've accepted people into my life for the benefit of the kids. My life morphed into the person who goes with the flow; very different from the person who liked to know what would happen and when.

Having kids with disabilities will do that you know. it'll make you do things, say things you never thought you would. It'll make you stronger, more fragile, more serious, more thankful. It'll make you feel more sadness and experience more joy than our typical peers.

Over the years I've learned that differences aren't all bad. I can only hope my daughter will feel the same way, someday, just a little bit. And I hope that day is sooner, not later. 

-----

Julia blogs about her family at Kidneys and Eyes and is on Twitter at juliaroberts1. She co-founded Support for Special Needs; a social network for families of kids with special needs. She can be found writing humor (ha!) at Aiming Low and scouring her fridge for the last cold diet coke and selling funny goods at Slice of Crazy Pie.

Waiting for the Other Shoe to Drop

   As a parent of children with special needs, I have always thought that I—and others like me--experience feelings on a level that most parents do not.  We experience more stress, lower lows, higher highs and a roller coaster combination of emotions along the way.  We also tend to be more suspicious of when things are going well.  At least I believe so when I talk to people making a similar journey.  We are constantly reaching for some goal, fighting the good fight, or going from one tribulation to another.  Well, it seems that way…at least for a lot of us.

   That’s why I guess I am waiting for the other shoe to drop.  Right now, B. is in a pretty good place.  We have discovered the right cocktail of meds, the right balance of support, and have finally begun to see some formal support emerging on the horizon.  Even school has been going well—a wonderful unexpected boon.  So why do I feel like this is the calm before some major storm?  Probably because being a parent of special needs has made me somewhat cynical.  Things can’t be going well since there is always some new hurdle to clear or some new mountain in the distance.  If I take a deep breath and allow myself to calm down, I’ll jinx it.  It really is hard to stop and smell the roses when you are always looking out for the thorns. 

   And the other shoe is a humdinger.  It is one that I think I have in common with countless other parents.  If the definition of Autism is going to be rewritten, as they are proposing in the upcoming DSM-V, will C. still fit the parameters under the new guidelines?  Will they still see the same kid I see?  Or will he no longer meet their qualifications due to the supports and progress we have fought for along the way?  He is considered high-functioning by THEIR standards…but will he be deemed too high-functioning to qualify for the same diagnosis now?  Where will the cut-off be?  I shudder to think what will happen to C.—and thousands of other people like him—if the line by which we have made determinations in the past is suddenly moved further down the road and he is left standing on the other side.  What is frightening is that he will still be the same kid with the same needs—but he may no longer be eligible for the very supports and accommodations that have helped him reached this point.  The dread I feel if that shoe should fall leaves me with a hollow, sick emptiness inside.  The thud from that shoe will have a tremendous, reverberating sound across the country as more people will be left dangling through the cracks.  Autism is a spectrum disorder—but what happens if you are considered to be on the fringe of the rainbow when you were once squarely considered a red-orange? 

   Is it any wonder that the chaos theory makes so much sense to some of us?  We can’t enjoy a moment of peace without worrying about the next cycle of stress, concern and doubt.  My husband and I worry that we are in some bubble that will pop with B. and his relative stability right now.  We worry that the relative stability that C. has had will be violently popped in order to “re-assign” perceptions and change numbers.  When you are on this side of the “discussion” the perspective is definitely skewed and subjective.

   So here I sit in a fragile state feeling like I’m stomping on the eggshells all around me.  I’m afraid to move, afraid to step in the wrong direction and plunge us back into a more chaotic or challenging circumstances.  Don’t get me wrong, I’m happy B. is doing well and we have been able to avoid some of the screaming, hitting, jumping and the like.  I just keep thinking it can’t last because the only constant is inconsistency, surprise and chaos.  You know, that never ending cycle of waiting for the next issue, condition, or thing to try.  Or just waiting to hear the thud of that other shoe falling with a resounding thud on the floor you just cleaned…

Pediatric Mental Illness? It's Like This...

Pediatric mental illness is screaming and crying; raging and breaking things; cursing and swearing; ER trips and suicide attempts...

...and it is midnight visits from a 9-year-old who still knows how to fit into the curve I make in the bed just the way he did when he was a toddler. "Mommy, I'm so glad you're the one who's my mom."

Pediatric mental illness is causing my marriage to become frayed and tattered by constant, unrelenting stress punctuated by terror...

...and it has also bound me to my husband and him to me with the strength of carbon steel forged by fire.

Pediatric mental illness is the cause of our deprivation due to living on one income: no vacations, no meals out, no new cars, and the horror and humiliation of calling on family for help when the car breaks down...

...and it is also a sense of contentment and pride knowing that, when it seemed that our flailing, struggling, violent, suicide-attempting little boy was doomed, we, his parents, were able to give him what he needed and help him back to relative stability. That may not always be true, and for so many families it has not worked that way, so we know that we are blessed, in spite of our financial suck-fest.

Pediatric mental illness is the hateful stares and nasty comments from strangers and those who do not (or will not) understand...

...and it is the vast, generous community of people near and far who surround us with love and understanding.

Pediatric mental illness is drama and crisis and terror...

...and it is also this little boy, my boy, whose heart is so broad, whose empathy is so deep, whose emotional generosity is so vast he takes my breath away. He is afraid of so many things, but he is not afraid of people in pain. He is no afraid to feel your pain with you.

Pediatric mental illness is the crumbling of our family around us, the absence of two of my children, the deep pain and woundedness in us all...

...and it is also a new understanding of what it means to be family, to invite without forcing, to choose to stay, not from obligation, but from love.

Pediatric mental illness is the utter destruction of faith, smashed around our feet and ground to dust...

...and it is the rebuilding of a new faith, faith that breathes humility into us in incomprehensible, overwhelming ways, faith that makes no false promises, faith that makes it possible for us to live with the fear.

Pediatric mental illness is the thing I would cure in an instant, no questions, no looking back...

...and still, there are gifts.

 

Adrienne Jones writes the blog No Points for Style.

Shining a Light

I've been volunteering for Autism South Africa since I visited their offices a few months ago.  Unfortunately, the financial difficulties the organization was experiencing then have become even more pronounced.  There is no government support.  Donations are dwindling.  Existing sources of revenue are drying up.   

There is the great dilemma- should you continue to push for awareness in a country where autism is under-diagnosed and misunderstood, knowing that it is already impossible to provide adequate assistance?

The one thing they desperately need- more money- I'm unable to bring.  I couldn't help but feel helpless.

And yet that morning...

• In walked a student from the local university looking for further information about autism spectrum disorders.
• An educator is travelling around the country providing workshops for parents, therapists and teachers.
• A therapist stopped by and asked to be added to the mailing list for more information about autism workshops.
• The mother of a newly diagnosed child was able to walk in and collect information about autism in her own language, and given direction about the next steps.
• Another concerned parent could call in and schedule an appointment for a full assessment free of charge.

The staff continue to work on ways to help everyone affected by autism in South Africa has access to the support and services they need, regardless of the current situation.

Following a phone call in which a father asked, "Is there any hope?" following the recent diagnosis of his child, the member of staff who took the call turned to me and said he wasn't sure how to respond to that question.  He asked me how I would have replied.

There is always hope.

When there is nothing left to give, hope is the one thing you can give.  We hopeful parents know that.  A cause is never hopeless as long as there are people trying to find it.  I don't feel helpless any more.  I described my first visit to the office as a flood, but now I know better.  It is a lighthouse.  In these dark times, Autism South Africa is still shining a light.  Now all that remains is to make that beacon brighter.

Spectrummy Mummy writes about the family who light up her life on her blog, Facebook and Twitter.

Modified

In Special Needs world there is a big difference between an accommodation and a modification. Webster might find them synonymous; high schools, do not. One sends you to college; one does not. One allows you join the Navy and Air Force; one does not. My son receives modifications, and modifications to the modifications. He is the exception to the exception. He is consistently inconsistent and predictably unpredictable. He stands out in any crowd: a crowd of typicals, a crowd of others with different abilities, a “crowd” of two.

Over the weekend his service plan was mailed to me, I’d read and approved an earlier draft; this one was for signing purposes only. It was all I could do to read it when it was e-mailed, and I must confess, I only gently skimmed it before signing it this time. I didn’t even show it to my husband. He can’t take it. There are things I can’t take, and he handles, and things he can’t take, and I handle. Isn’t that what marriage is? We’ve been at this long enough to know what needs to be discussed, what requires a plan, and what the other can graciously and compassionately, simply make go away.

I made the service plan go away. I signed it, returned it, and hope not to have to look at it again for months. It’s not that I don’t appreciate the hours and hours of testing, evaluations and effort that went into making the plan. It’s not that I don’t appreciate the careful thought that went into forming reasonable goals and a timeline for which to achieve them. It’s not that I don’t appreciate the earnestness and dedication of the teachers creating the plan. I do. I really do. In particular I appreciate the social goals of turn taking in a conversation, using an appropriate tone of voice, remaining polite, staying on a topic of mutual interest, all of that. God only knows how hard we’ve tried on all those fronts, all efforts by experts is appreciated and welcome. So, too, is the goal to read and comprehend at a level that will make him as independent as possible. Real life math skills? Yes, please. I don’t have a problem with anything ON the plan, what I have a problem with, is that nowhere on the plan does it highlight his strengths. His cognitive weaknesses, difficulty focusing and remaining on task, working independently and at anything approaching grade level, that’s all there spelled out in excruciating detail. Nowhere is his kindness, his spirit, his compassion, his joy, his soul. No where does it reflect his ability to meet someone and never forget their name, track their age forever, hold on to every little tidbit about that person that makes them special and unique.

If the rest of us had to have our weaknesses documented ad nauseam and ad infinitum, that body of information trail us for years and years, possibly our whole lives, how would that be? If we needed whole teams of people to determine if we’re meeting our goals 80% of the time, how would we handle that? Everyone signing their names and moving the goal forward until it is either reached or stricken when it becomes painfully evident it will never be a reality? Can you even imagine?

I don’t even pretend that I can change the IEP process, even if I wanted to, even if it was possible, I no longer have the strength. All I can do is remind myself that my son is more than the sum of the parts of the IEP, he is not what that he is on paper – not by a long shot. The thing for me to do is modify the weight I put on it; accommodate my own need as his mother to see him fully. The gifts he has and the gift he is. His exceptional, unpredictable, inconsistent, perfectly imperfect and whole self.

 

 

Turn The World Around

What if someone came to you and said the following things:

Why do we view "disability as a deficit model"?  Meaning, why do we look at what people with learning differences are lacking or without?  Why do we try to remediate those "deficits"?

Why are special education graduate programs geared towards teaching "behavior modification" in the classroom?   Why aren't schools interested in understanding why kids think and behave the way they do but instead focused on fixing the "deficits" to fit in?

Why do we look at celebrities who have disabilities as achieving IN SPITE of their disability, rather than BECAUSE of it?

Why do some "first responders" like teachers and doctors view disorders like autism as the end of the world for our kids?

Why do we believe that people can not achieve because they have a label?

One twenty-eight minute video.  And all these questions were asked.

I watched Garret Westlake, CEO of Stem Force Technology, talk, and my heart grew.  I had hope for the future.  Not just for my kids on the spectrum, but for any kid who has been labeled with a "disorder" or "disability".  In his talk "Disability as a Catalyst", he lays out all these questions.

Garret flipped the world on its head for me.

We're told as parents that our kids' disabilities will hold them back.

But what if it's the very thing that moves them forward?

What if colleges looked at a student's individual strengths and what they could contribute to their campus community, rather than rejecting them based on a composite test score?  What if employers did the same?

What if  special education teachers were trained to understand the science behind our kids' brains?  What if they knew how to find that spark that makes them special and bring it out?

What if our kids were made to feel proud of their learning differences?  What if someone told them that their Asperger's was a strength, not a weakness?

What if the very thing that makes our kids "different" is what makes them more marketable?  More in demand? More incredible?

What if we as parents knew that from the start?

Watch the video.  As my friend Jess said over at a diary of a mom, people like Garret are "...creating a path to full participation, brazenly removing the barriers to success for people with autism – and doing it by standing the entire paradigm on its head.  This is how it begins."

This is how it begins.  I am a hopeful parent again.

For these guys:

For more on what companies like Stem Force Technology are doing, click HERE. For information on their Asperger's Leadership Conference, click HERE.

And watch the whole video here:

Disability As A Catalyst

"Do you know who I am
Do I know who you are
See we one another clearly
Do we know who we are.

We are of the spirit
Truly of the spirit
Only can the spirit
Turn the world around" - Turn the World Around by Harry Belafonte

Ought To Be

"All I'm saying is simply this, that all life is interrelated, that somehow we're caught in an inescapable network of mutuality tied in a single garment of destiny. Whatever affects one directly affects all indirectly. For some strange reason, I can never be what I ought to be until you are what you ought to be. You can never be what you ought to be until I am what I ought to be. This is the interrelated structure of reality." Martin Luther King, Jr.

It doesn’t take long.  As parents of children with differences, we tend to cut to the chase rather swiftly once we’ve understood that we are talking to one who knows this way of living.  I ask bolder questions, I lay more of my own truths on the table, eye contact is extended and personal space contracts slightly.  While we tell ourselves it’s because this person is a “safe” person, this is one who gets it; I believe there’s a bit more than that.  For me there is, anyway.  Every single stone must be turned over and examined. I cannot afford to leave any as they are.  It would not be fair to her.

And each person I meet with perspective on disability is such a stone.

I ask, I answer, I wonder if this other person holds a clue, a key.  Will this other mother put something in words that shed enough light for me to act?  With this dad describe something in our lives in such a way that clarifies for me my next move?  Do they know someone who knows someone who I should talk to? Will their counter to my view set me on a new, more direct path?

Opportunist, yes.  Not void of compassion, understanding or appreciation for mere connection. Not unsympathetic or single-minded or lacking reciprocity.  But still.  The stone must be turned.

It must be turned because the vision we have formed for her is not one of staid, smiling subsistence.  Her character, her strength, confidence and humor, her clear preferences and affinities, her complexity and wit, her superpower of creating the circumstances she wants, all of that and more makes the too common projection for those with intellectual disabilities – a life of adult daycare or superfluous workshop “work” for pennies, possible over-medication, once per week bowling, wide open hours of nothingness, endless receiving, gaping caverns where the act of giving should be, a life peppered with patronizing pats on the hand meant to evoke spiritless smiles – who she is right now makes that life absolutely unimaginable, impossible for her.

She requires more simply because she is human, yes; because to be a full citizen of the planet means to connect to and contribute to the rest of humanity.  But I am often surprised when I am faced with description of a young child with differences in ability similar to my daughter’s and I am told with 100% assurance that this child will never be independent to any degree, will never live on her own, will never engage in work that means something to her.  What then, I want to ask, will this seedling who is already excused from a life of intention, what will she actually do as an adult, then?  What will she do as a child, for that matter, if there is no trajectory, no vision, nothing to prepare for?  How are hours of childhood spent if not in laying the foundation for a self-designed future - to the extent possible - through social, ethical, functional and academic experimentation?

What ought this child to be right now, then?  As she grows?

My daughter will not “be my constant companion,” as is so often offered as a consolation by strangers when they observe the alternative communication between she and I or coupled with their shocked reaction upon hearing the answer to their inquiry about her age.  She will not, in fact, “always be with me.”  “May God bless you for your trouble,” they tell me with heads tilted to the side, toppling with the load of generous intention.  Alas, they have it backwards. It is not her life that is contingent upon my desire for companionship, but rather my daily occupation that is contingent upon what both my daughters require to ensure they lead the healthy lives they intend to lead as adults.  May they be guided in their choices, for I have long since made my own. 

Go ahead; ask her what she wants to be when she grows up, as you might any 8 year old.  Though it may take her a while to express it and you may lack the ability to understand her response, she has an answer.  She knows she ought to be something pretty amazing.

My questions will not stop. Stones will not cease being turned.  Trees will not cease being shaken.  Both of my children are destined for feats untold, as your children and your neighbor’s children are.  An obstacle for my child is an obstacle for your child.  An obstacle for your child is an obstacle for mine. “Whatever affects one directly affects all indirectly.”

May each of us see where potential greatness on any scale is being thwarted, may we call oppression what it is.  May we speak against it.  May we act to end it.

Wishing you a provocative Martin Luther King, Jr. Day.

http://farmerjohncheeseandotherjoy.blogspot.com/

Compare and Contrast

After my son was diagnosed with autism, I had to learn to stop comparing him to the other kids we knew. It took a while, but eventually I tossed out the milestones books, and replaced phrases like “should be able to” with phrases like “his own path” and “he’ll get there when he’s ready.”

An intensive one on one early intervention program necessitated leaving Moe’s regular play group, so I had fewer opportunities for direct comparison. Moe then moved directly into an autism preschool class, his peers all occupying the elite portion of the spectrum that allows them to be in this class. So most of the kids I see on a daily basis are also autistic.

I do still keep in touch with friends from the mom’s group. Many of them are good friends, and I see their kids occasionally. Last night we all went out for sushi, and I can honestly say it was the first time since Moe’s diagnosis that I did not have to fight back tears as I heard the stories of what their kids were doing and how they were preparing for kindergarten.

It helps that have a typical two year old as well and can finally relate. Actually, she’s what my husband and I call “hyper-typical.” She breezes past milestones with the greatest of ease. She plays with toys exactly as the toy manufacturers suggest. She doesn’t eat the crayons or play-doh. She speaks at the level of some three and four year olds and plays well with others.

I’ve learned to stop comparing Moe to his little sister as well.

I have recently started to become close with some of the moms from Moe’s class. I have many online connections, but these real life connections are building close friendships I haven’t felt since I left the play group. We chat as we pick up our kids from school, meet for coffee or breakfast, and exchange long emails when our kids have finally gone to bed for the night.

And once again, I find myself comparing. I am filled with such hope when I learn that one kid started talking at age five. Another finally just learned to use the toilet. These things are possible! I read the stories and books, but there’s nothing like hearing from someone you know to make you feel like it is possible.

I also compare the other way. One kid recently showed his mom the word “x-ray” on his iPad after he broke his arm. Another kid is finally speaking in sentences. The list of achievements goes on and on, and I am thrilled for them, but I also think “Moe can’t do that.” And I forget all about what Moe can do, and all that good stuff I learned about getting there when he’s ready.

 But Moe has a way of reminding me. Last night, as we were getting ready him ready for bed, Moe started saying “mom” over and over. At first I wasn’t sure. Was he just making random sounds? Was he saying he wanted “more” swinging? And then, as if he knew I doubted him, he looked and pointed right at me.

Moe will point or touch pictures or items to make choices but this was the first time in over two years I can remember him pointing like that. We were so thrilled with this that later that night we asked him to give  a kiss to each of us in turn, first Mom, then Dad, then little sister Jelly, which he begrudgingly did, but did nonetheless.

And all of that good stuff that I learned came flooding back. And my heart was filled once again with “on this own path” and “when he’s ready” and lots and lots of hope.

And most importantly, with so much love for my perfect little boy.

Ready To Ride The Dragon?

The Year of the Dragon begins on January 23, 2012, and ends on February 9, 2013. In Chinese astrology, in addition to having an animal sign, each year also has an element (wood, water, fire, earth or air) that helps to define the symbolic animal and further explain the coming days. This year, we have a Water Dragon. The last time we had a Water Dragon was in 1952.

Have you been wanting to make changes in your life? Try new things or begin a special project? This is one of the best years to do it!

There are 12 animal symbols (one for each month) represented in Chinese astrology and we are entering The Year of the Dragon. Of all the symbols, the Dragon is the one mythical creature (as compared to Tiger, Rabbit and others) and the only one that can fly. This promises us exciting year!

Dragon Characteristics

When we examine Chinese lore, we see that Dragon years can be dramatic. Why? In Chinese astrology, the Dragon is the mightiest of the signs. Dragons symbolize character traits such as passion, dominance, and raw ambition. They are unafraid of challenges or change and do everything on a grand scale. In China, the Dragon is also a sign of good fortune and the Year of the Dragon is considered an auspicious time for new beginnings. This is a good year to start a family, a new business venture, or embark on a transformation in your life. The Dragon, perhaps because of its passion, may also bring a rougher style of communication - less diplomacy and more directness, so be prepared. We are coming out of a Rabbit year and Rabbits are much more diplomatic than Dragons, but I guess when you are a Rabbit you have to be. Because this year is the Year of the Water Dragon, affairs maybe tempered because water helps calm the Dragon’s fire. That’s why Water Dragons tend to be less stubborn than your regular old Dragons. The implication of having a Water Dragon year is that Dragons might find a little more room for seeing someone else’s point of view and behave in a less dramatic fashion. Regardless of your particular animal sign, the Year of the Dragon promises stimulating days to come.
 
Are You a Dragon?

In the Chinese Zodiac, your sign is determined by the year in which you were born. The Dragon years are: 1904, 1916, 1928, 1940, 1952 (also a water dragon), 1964, 1976, 1988, and 2000.

The people born during The Year of the Dragon are an extroverted, enthusiastic bunch. They also tend to be hard workers, big risk takers, brave and conceited. They are known for quick tempers. You can see why the Dragon is never to be ignored.

As we begin any new year, many of us spend time setting goals and imagining the year ahead. Our last Year of the Dragon occurred in 2000 and, at that time, everyone was concerned about a global meltdown because of the infamous Y2K. It never happened. Now, for this 2012 Year of the Dragon, there are more dire predictions. But, as long as we are still here, I plan to embrace the fearlessness of the Dragon, begin new projects and be optimistic about the Year of the Dragon. I plan to ride the Dragon and hope I don’t fall off.          

Happy New Year!

Fostering self-esteem

Parenting is certainly harder than it looks on TV sitcoms!  When my children were very young I found it hard because of lack of sleep and general fatigue.  As they grew and started to sleep through the night I realized that the infant years weren't so hard after all - it's the navigating through the terrible threes (twos weren't nearly as bad as the threes in our house) and beyond into raising children with a strong moral code and high self esteem that is challenging.

Right now, at age 6 and 4, my children believe they are totally awesome!  It's not uncommon for me to see my six year old wear every possible pattern of material at the same time, sparkle shoes and silly hair accessories and strut around like she is ready to take on the world.  My 4 year old has an overabundance of charm that just draws people to her and she knows she is special.  I love the self-confidence they have today and hope they can carry a lot of this into the future.

This year we are taking some action to continue growing their self-esteem.  For my 6 year old, we added some chores over and above what she already does to keep her room tidy.  The chores, which she helped pick out, were chosen because they contribute to the household.  She chose taking the trash baskets from the upstairs and emptying them into our kitchen trash can and using Lysol wipes to clean the kitchen table after dinner a few times a week.  She has been wanting to use the wipes for years now and I finally sat down with her to explain the proper way to use chemicals and entrust her with this chore.  Oh, how she loves to tell everyone about how she contributes to the house!  I know this phase will not last forever, but right now I want to continue to foster her pride in helping contribute to the family so we are making a big deal out of all her help.

For Emma, our focus this year is on potty training.  She has been doing really well at home and we want to carry it over for when we are out of the house.  We are using a timed method because she is non-verbal and non-mobile, but she is starting to make more vocalizations when she wants to go and when she is done and ready to get off. Emma takes a lot of pride in going on the toilet and it shows in her face.  I have high hopes of moving her into pull ups sometimes this year and she is so happy when I talk to her about it.  

I hope that some of the things we are working on this year will continue to foster my children's self esteem.  I'd love to her from you on what you have done to help foster your child's self esteem.

 

Turning Six

My twin girls turn six years old later this month!  We’re going with the super hero theme again this year.  Word Girl and Captain Huggy Face were the flavor at last year’s party, and we’re going with that again this year mainly because the Word Girl costume still fits Sylvie’s twin sister.  Word Girl rocks on multiple levels, but primarily because she is a smart girl who knows every word in the dictionary! 

Captain Huggy Face doesn’t talk and has no super powers—in fact, he’s a pet monkey on the PBS kids show.  I don’t think my daughter is a monkey, but she is sometimes merely a sidekick to her frenzied sister. Sylvie’s sister is a whirling ball of energetic madness most of the time, being a typical five-year old, while Sylvie struggles to swallow 20 ounces of liquid a day and get phlegm out of her throat with colossal coughs.  It’s hard to feel any sort of balance standing in between these two little beings—one who is so fiercely vocal and independent and headstrong that she drives me into rages.  The other who is so intensely dependent for absolutely anything that she drives me to tears.  I anticipated chaos when we discovered we were having twins, but I never imagined such disparate worlds in which my daughters would occupy. 

 

The circles and bags under my eyes are far more prominent than when the girls were born.  I’m far more fragile and tired and stressed than when they were infants. I eat more and drink less, laugh more sporadically and see far less films than pre-twin life. My belly has never reclaimed its pre-twin shape and now hangs from my torso like a lost puppy looking for a new home.  I wasn’t a particularly anxious new parent, but I feel far more fretful now as I worry each day about Sylvie’s health and her sister’s mental well-being.  I long for that perceived harmonious time when my twin girls shared my womb, as I anticipated their arrival and their future together. For the first six months of their lives, they shared a co-sleeper, happy to have their familiar warm bodies squished together in small spaces.  Their papa and I aimed to create a deeply secure and safe climate where our daughters could thrive —a goal many parents strive to achieve for their offspring.  I often think I’ve lost not only that larger vision but my compass for such a secure and safe future for either of my children or myself.

While I use the new calendar as a time to reflect and hope for a fresh start, I don’t typically have many concrete resolutions for myself.  However, this year, I want to focus more on self-care. It’s my birthday present to my daughters as well as to myself and my lovely partner of 16 years. 

Over the last year, I’ve made a new friend and colleague in the founder of Parent-to-Parent USA; she’s connected with people all around the country who are advocating for children and youth with special health care needs and disabilities (CYSHCN).  Earlier in the fall she slipped me an August issue of this fabulous Canadian magazine called Bloom –a bi-annual publication for parents of kids with disabilities. In the particular issue my new friend gave me, there was an article about self-care and respite that alter my perspective a bit.  The article, “Respite:  ‘It Needs to be a Way of Life’” reaffirmed the importance of taking a break and gaining perspective. When the girls were first born, I was deliberate about getting exercise, sleep, enough water and breaks.  But once we were thrown into the dark world of living with Sylvie’s diagnosis, we went into survival mode, just trying to piecemeal respite as we could, and squeezing random “date nights” into our schedule.  But here we are into year six, and Sylvie is still with us!  A miraculous cure for her diseases has not yet arrived, so I better recalibrate for a long-haul marathon where self-care is a regiment of faith and necessity. 

So happy birthday little ones.  Your mama is going to work harder this year to make sure she takes care of herself more so that she has more energy and focus for you!  She’s going to take more walks and drink more water and eat less chocolate and sleep more.  In the meantime, you keep growing and playing and laughing in this next year of life. 

 

When Kirsten isn’t working on self-enlightenment, self-care and finding respite, she is a professor of Communication Studies at the State University of New York.  The paradox in this quest does not escape her.



Progress, Step by Step

Saturdays, these days, my husband and I divide and conquer to bring the boys to their simultaneous basketball practices, and it was my turn for Jake.

Jacob truly loves basketball and the "Challenger" Special Needs division we finally found for him to play in last year, but was having a hard time sharing the ball after all those months of getting his own when we went to shoot baskets in the schoolyards.

Jake shoots wonderfully well, but the rules of the game, remembering to dribble, the need to pass, to pay attention to what other people on the court are doing... all these things continue to elude him. Autism, you know.

Jake kept chasing after the kids with the balls and yelling "STOP! That's mine!" Cringe.

I try not to interfere, to intervene too much when we're at basketball, try to give him his independence, to not be "that mom" kid-coaching from the sidelines. Yet the actual coaches seemed too busy to deal with this really-not-OK behavior and I couldn't let him terrorize the other kids, who were mostly younger and / or smaller than my giant son.

I kept popping out of my seat, running up to Jake to remind him that game is played with ONE ball and everybody shares it. Or yelling something to that effect when he was within earshot of my seat on the parent bench.

A couple of times he came over to me looking sad, and I kept sending him back into the game after a quick hug or a deep drink of water, reminding him to stay with the other kids wearing red vests and to keep his eyes on the ball.

Jake held it together during practice, drifting in and out of connection with the drills and game. But afterward as we were getting our coats on I saw the eyes blinking, the lip trembling, the sadness welling up; and on it came.

So I sat with my son, sobbing and wailing. I held my son, lost and losing it, his words coming out in a jumbled salad I could not make sense of.

And then in the middle of it all, he looked me in the eyes and asked the most amazing thing:

"What's happening to my brain, Mom?"

WHAT?

This level of self-awareness, recognizing that something in his brain is going haywire?

Monumental.

Unprecedented.

An incredible thing that I feared I would never see.

And then Jake was telling me that he was going to go home and cry at Cocoa the cat, and that then she would be mad at him, and he started to caterwaul anew.

I was trying to piece it together, realizing he might be thinking I was mad at him for having had a hard time in the game, and maybe even mad at him for crying, now.

I kept telling him to look in my eyes and see that I wasn't mad, that no one was mad at him, that I was proud of him for how hard he had tried playing basketball today, that it's fine to cry if he's sad, but that maybe his brain was stuck, and if he wanted to stop crying I would help him.

"Remember to breathe Jacob; slow breaths; in, out; one, two."

He gained his composure, only to lose it again. Again and again. We were going to be late for the movies.

And then one of the coaches came over and praised his shooting abilities, promised he would get more ball time next week.

And maybe my murmured words of love, of soothing, had washed over him enough that they were sinking in.

Or maybe his brain finally stopped misbehaving, let him move on

But suddenly it was OK again.

My boy smiled. Said: "I want to eat popcorn at the movies, Mom."

And so off we went.

And loved the movie as Jake loves all movies, although this movie, Hugo, was particularly lovable. (Paris in the 30's, a history of cinema, what's not to love?)

And when we stopped for a quick grocery shopping before coming home, Jake was remarkably present, helpful. He reminded me that we needed bananas, picked out a nice ripe-but-not-over-ripe bunch himself without any prompting at all.

Hungry for dinner, we hopped a cab home, and as we pulled up in front of our building he said: "Thank you driver, for taking us home!" to the cabbie, more polite by far than his twin ever is.

And so deep into the evening I pondered my son and his question.

A sign that more self-awareness will one day come.

That one day I may actually know my son Jacob's innermost thoughts, a cypher no longer.

Patience is now needed. For this can not be pulled from him, but rather, I must wait for it to blossom.

Wait for his next step, in this dance that he alone knows.

Let him be.

Enough as he is, and embracing what he will become.

(Note: This is a repost from my personal blog, so if you read me there regularly and it sounded familiar, you are not just imagining it... I am just swamped this month but didn't want to miss posting on H.P.)

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.

Perspective

In the absence of posting anything new to this website or my blog, I've been busy making many life changes. With my job as Program Director of the College Internship Program (a role I grow to love more and more each day), getting married, and buying a house, I've been too busy to attend to some of my regular day-to-day activities.  This is in no way a complaint - I appreciate all of it, no matter how stressful or overwhelming it may feel in the moment.  My life's journey has involved many roadblocks, and these changes are definitely all positive.

One of the changes that has been majorly positive is Jacob.  He continues to do well at Culver City High School. I'm getting great feedback from all of his teachers, he has a few friends, and, through the school's Workability Program, he starts his new job at Best Buy on Monday.  Last year, he worked at Petco stocking and organizing and he did a great job so he's not worried about his new employment.  He's just hoping that he gets to stock and organize the merchandise in the DVD department as this is pretty much his dream job.  When Jacob has disposable income, Best Buy is one of his favorite places to shop, and he's bought a lot of his movies from the store in our neighborhood.  I'm just going to have to help him learnn to budget his money so every cent he earns is not spent before he cashes his check. 

I can't remember the last stressful moment I've had with Jacob.  The days of his disruptive behavior in class ended long ago.  He is now completely independent in completing his homework, so the days of coordinating with his teachers in turning in his assignments are a distant memory.  He wants to attend college after he graduates next year, so he's actually planning for his future.  He even takes care of all his personal hygiene without my prompting or nagging.  Pretty much of what I had hoped Jacob would be doing at this stage of his life are actually happening.  Way to go Jacob!

Did I really think this is where Jacob was going to be at 18?  To be honest, I had no idea.  Though he was an adorable little guy, his behaviors were at times extremely challenging.  He was never a child that could attend birthday parties on his own.  Play dates needed to be moderated and facilitated by me.  At one time, he had lots services to coordinate, so I spent hours driving Jacob to and from therapy and doctor appointments.  Now that it's nearly 15 years from the day of his diagnosis, I guess it all paid off because Jacob is now a fairly happy and confident young man.  Not that there isn't more room for growth, but at least now I'm optimistic about the future.  When Jacob was young, there were days when I feared the unknown.  At least for now, Jacob seems to be on the right path and the future isn't a big, scary question mark.

So yes, I'm truly a hopeful parent these days, I wish the same for every parent with a child with an autism spectrum disorder.  And now that I'm the Director of the College Internship Program in Long Beach, I can also help other parents reach this point with their young adult children.  Besides Jacob and all of the wonderful events currently happening in my life, this is something that I truly appreciate

Now that Susan's life is returning to a resemblance of normalcy, she will be again be blogging regularly at Taking the Awe Out of Autism, where she shares her experiences in raising her young adult son on the higher end of the autism spectrum.  The Spring term at CIP just started on Thursday, and with the addition of 5 new students, it's turning into a wonderful community that offers young adults with ASD, Aspergers and learning challenges the chance at acheiving a successful, productive and independent life.

 

Hooray for Holidays...

I wish I was 17, so I knew how to type irony. Perhaps I should add a hashtag

#stupidcrapweallsay;
#reasonstopokepeopleintheeye;
#thingsthatmakebileriseinmythroat…

We are 1000 kms north of home again, doing the post Christmas family square dance. As people age, the delayed family visit is actually a much more civilised approach to the holidays (dementia and hearing problems + an autistic child with chronic hyperacusis = the less people in the room the better).

The good side of the ledger here is that Billy is universally loved by his family. The oldies would do anything for a hug, a smile, hell, even an answer to a simple question would do. The deficit part is that only a select few have been able to gain any real understanding of him, and how he operates.

So, the desperate search for love ends in elderly folk yelling at him (because he clearly can’t hear), bombarding him with language (because he clearly didn’t understand it the first time), editorialising on his behaviour while he’s still in the room (because it is so different it is clearly ‘wrong’, ‘strange’ and ‘silly’), rinse, repeat endlessly.

Billy’s eight. He’s autistic. He has been autistic for longer than we’ve known. These tactics have not worked in eight years, which makes me wonder why they keep on using them.

We have provided books, articles, simple directions all sorts of things to try and help family communicate effectively with Billy. We’ve talked, and talked to them, trying to model the language and the methods that will get through to him. Sadly, we may as well have been singing Lady Gaga to them.

I know they’re old. It’s OK. But it’s sad because they are family, the only family he’s got, and they have barely scratched the surface of Billy’s excellentness.

When they fail to get a response, they lapse into a much more damaging mode of communication. They talk at him like he’s not there, telling him (in an admittedly loving tone) how he’s not ‘normal’, not ‘like other kids’ they know, and definitely needs to get used to the way ‘people’ do things.

They tell him the jerks and grimaces that overtake his beautiful body are ‘silly’ and he should stop those or people will laugh.

They think they are doing the right thing.

I hear that, and so I do not intervene. I feel like the worst parent in the world for not intervening. But the grown ups want contact with Billy, and this is all they seem to be able to muster. I don’t want to negate their efforts, and I don’t want to be the over-protective helicopter mother (that I am in their heads anyway) so I let it slide. It feels wrong. It is wrong. But the grown ups have demonstrated clearly that they can’t change, and maybe this is as good as it gets.

It has made me think a lot about language. How we fight and fight for those first few words from our(for those of us lucky enough to hear them), without (at least me) knowing that it’s not really the autistic child that has the most language learning to do.

We’ve been fortunate, for sure, but yesterday we learned a little more about the impact of the language that gets used around Billy.

Picture the scene.

His grandmother’s dog barks. This is pretty much Billy’s kryptonite (or one of his kryptonites). This sends him into a spiral, where he repeatedly asks to go home, needs space between him and the dog and the unpredictable yelling grandparents.

During the spiral, he makes this pronouncement.

‘My brain is sad, Daddy. My brain is sad and it’s silly. People will look at me and laugh because they will know that I have a sad brain.’

Oh, awesome. Truly fabulous. This is what my child has picked up about himself over the last couple of days.

I’m not going to say it to the people who helped place those words in his head (lest Armageddon descend on us all), but I will say it to you (and I know I’m preaching to the choir)…

• ·      Just because a child is not answering, doesn’t mean they are not hearing.
• ·      Just because a child is not speaking, doesn’t mean they are not listening.
• ·      Just because a child is not looking at you, does not mean they are not understanding.

There are a few shining gems of older folk for sure, but I am starting to think I’ll give up trying to help the rest of them understand.

We will, instead, try to help Billy understand that he should not believe everything he hears. Which, given autism, will be incredibly easy, right?

 

 

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

Hooray for Holidays...

I wish I was 17, so I knew how to type irony. Perhaps I should add a hashtag

#stupidcrapweallsay;
#reasonstopokepeopleintheeye;
#thingsthatmakebileriseinmythroat…

We are 1000 kms north of home again, doing the post Christmas family square dance. As people age, the delayed family visit is actually a much more civilised approach to the holidays (dementia and hearing problems + an autistic child with chronic hyperacusis = the less people in the room the better).

The good side of the ledger here is that Billy is universally loved by his family. The oldies would do anything for a hug, a smile, hell, even an answer to a simple question would do. The deficit part is that only a select few have been able to gain any real understanding of him, and how he operates.

So, the desperate search for love ends in elderly folk yelling at him (because he clearly can’t hear), bombarding him with language (because he clearly didn’t understand it the first time), editorialising on his behaviour while he’s still in the room (because it is so different it is clearly ‘wrong’, ‘strange’ and ‘silly’), rinse, repeat endlessly.

Billy’s eight. He’s autistic. He has been autistic for longer than we’ve known. These tactics have not worked in eight years, which makes me wonder why they keep on using them.

We have provided books, articles, simple directions all sorts of things to try and help family communicate effectively with Billy. We’ve talked, and talked to them, trying to model the language and the methods that will get through to him. Sadly, we may as well have been singing Lady Gaga to them.

I know they’re old. It’s OK. But it’s sad because they are family, the only family he’s got, and they have barely scratched the surface of Billy’s excellentness.

When they fail to get a response, they lapse into a much more damaging mode of communication. They talk at him like he’s not there, telling him (in an admittedly loving tone) how he’s not ‘normal’, not ‘like other kids’ they know, and definitely needs to get used to the way ‘people’ do things.

They tell him the jerks and grimaces that overtake his beautiful body are ‘silly’ and he should stop those or people will laugh.

They think they are doing the right thing.

I hear that, and so I do not intervene. I feel like the worst parent in the world for not intervening. But the grown ups want contact with Billy, and this is all they seem to be able to muster. I don’t want to negate their efforts, and I don’t want to be the over-protective helicopter mother (that I am in their heads anyway) so I let it slide. It feels wrong. It is wrong. But the grown ups have demonstrated clearly that they can’t change, and maybe this is as good as it gets.

It has made me think a lot about language. How we fight and fight for those first few words from our(for those of us lucky enough to hear them), without (at least me) knowing that it’s not really the autistic child that has the most language learning to do.

We’ve been fortunate, for sure, but yesterday we learned a little more about the impact of the language that gets used around Billy.

Picture the scene.

His grandmother’s dog barks. This is pretty much Billy’s kryptonite (or one of his kryptonites). This sends him into a spiral, where he repeatedly asks to go home, needs space between him and the dog and the unpredictable yelling grandparents.

During the spiral, he makes this pronouncement.

‘My brain is sad, Daddy. My brain is sad and it’s silly. People will look at me and laugh because they will know that I have a sad brain.’

Oh, awesome. Truly fabulous. This is what my child has picked up about himself over the last couple of days.

I’m not going to say it to the people who helped place those words in his head (lest Armageddon descend on us all), but I will say it to you (and I know I’m preaching to the choir)…

• ·      Just because a child is not answering, doesn’t mean they are not hearing.
• ·      Just because a child is not speaking, doesn’t mean they are not listening.
• ·      Just because a child is not looking at you, does not mean they are not understanding.

There are a few shining gems of older folk for sure, but I am starting to think I’ll give up trying to help the rest of them understand.

We will, instead, try to help Billy understand that he should not believe everything he hears.

Which, given autism, will be incredibly easy, right?

 

 

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

Not What We Expected

Something I just learned that I thought I’d pass on.  Did you know that hospitals may be able to help with aftercare?  There is usually or discharge planner or social worker who can help you.   I don’t mean the usual, but when something goes wrong after leaving the hospital.   Over a weekend, another family member (not my daughter this time thank goodness) had to go to a rehab center until she was strong enough to go home.  There was some confusion and she ended up at the wrong center and we were making phone calls outside of the workweek.

 

Of course everyone is off til Monday…

So what could we do?  We started by calling the primary care physician and specialists but got the answering service.  Since it wasn’t (yet) an emergency I thought why not speak to the person who did the discharge before she left the hospital.  The discharge planner was very helpful and said that my relative had mistakenly requested a facility in the same city of the one she really wanted to go to.  I realize as parents that we would most like be in charge of aftercare plans but thought these might be good tips just in case you end up someplace that really isn’t appropriate.    Anyway, I asked her how we could fix this.

 

What we did:

• Spoke to the supervisor at the facility where she was currently.  We explained the mix-up and they asked us to call the facility she really wanted (as did the discharge planner) to see if there were any openings.
• Called the “preferred” facility and asked for the supervisor to explain the situation.  There were no beds until Monday but we got the direct extension to call the social worker first thing.
• Spoke to the supervisor of the original facility explaining we would transfer but also asked to switch her to a private room (which they did). 

 

Sometimes it’s not this easy, but the discharge planner also sent me a list of nearby facilities (including telling me which was a “sister” facility in case they couldn’t switch the room).  Everyone was very helpful at the hospital and both facilities, and knowing it was temporary calmed everything down.  I’ve added just two resources in case you need extra help (but hopefully will never find yourself in this situation).  You never know.

 

 

Remain hopeful,

Lauren

 

Resources:

Family Voices (parents of children with special needs)

www.familyvoices.org

 

National Family Caregivers Association (all caregivers across the lifespan)

www.thefamilycaregiver.org

IEP Stands for Intensely Exasperating Process

Not every hill is worth dying on. I get that. But dealing with a school district that claims one thing and behaves conversely is beyond frustrating. Deciding whether or not to pursue due process, an appeal, etc. is a big decision.

“I am so passionate about being with the children!” claims the special education teacher. The same teacher who in my daughter’s annual meeting reduced her to a statistic to support their reasoning for her services, or lack thereof. Credibility goes out the window in an instant in a situation like that. Our input was blatantly ignored, and we were told that if we did not like or agree with the district’s ‘proposal’, we could choose not to sign the document. Riiiight. Because I want to delay or prevent my child’s services. We signed all but the part with which we disagreed, and later received a four page letter form the district telling us exactly why they thought we were wrong to state they ignored our input. Add insult to injury much?

Despite putting our request in writing in advance, we were told we would not be receiving a progress report (though other children’s parents were) because our IEP meeting was imminent. Later I discovered we could have had a copy of the proposal ahead of time. Because we didn’t receive it, I totally lost it at the meeting. Tears everywhere, embarrassing but I would do again if it meant helping my child, and a very uncomfortable table of 10.

Our concern was ignored and denied, and we were told we could ‘review’ at her first progress report. They can still say a big fat NO. I understand they can only review what they ‘see’ within the educational realm. But to have so little regard for our concerns was so disappointing. Appeal? Hmm, because we need one more thing on our plate right now. My guess is the appeal would take about as long as the time between now and her first progress report. Choosing what’s right for our child doesn’t always mean we can make it happen. Every choice is a fork in the road. An intensely, exasperating process indeed.