The Victim, the Persecutor and the Hero

According to William Shakespeare:

All the world's a stage,

And all the men and women merely players;
They have their exits and their entrances,
And one man in his time plays many parts....

Taoists philosopher, Yun Xiang Tseng has a similar theory, he calls it the Game of Life. In this game, there are several players:

The Victim
The Persecutor
The Hero

According to Tseng, each of us plays each of these roles throughout our daily life.

He warns however, that sometimes these roles are not what they appear. When you are a hero, you are sometimes a victim. When you are a victim are you seeking to prosecute? When you are a prosecutor do you believe you are a hero?

The secret he says, is to play each role with gusto, to enjoy the position you are playing. But when the day is done, remove your mask, and separate yourself from your role. This he says, is the key to happiness. To the Taoist philosophers, emotions are like decorations in the living room. It is important to notice and explore them; but when you are done it is more important to place them back upon the shelf where they belong.

As a parent of two children diagnosed with special needs, I am all too familiar with these masks.

When my son Nicholas was first diagnosed with Prader Willi Syndrome, I felt betrayed, and played the role of victim.

When I battled with schools, insurance companies and drug companies, I felt angry, and played the role of persecutor.

When I fought the fearsome forces of disease, I felt alienated and misunderstood, and played the role of a reluctant superhero.

Stan Lee's The Traveler by Boom Studios

I have discovered that I have become addicted to my masks, without them I do not know who I am.

The masks serve an important function. They protect my fragile heart. I am afraid that if I take them off, I may become weak and emotional, unable to provide my sons with fearless leadership and continuous critical care.

But lately the masks feel heavy. They do not feel real. I am beginning to feel angry, bitter, resentful and tired. I have lost my desire to enjoy the play. I have lost my desire to enjoy this Game of Life.

The "me" beneath is struggling to be seen and acknowledged once again.

"Special needs parent" is a role I play, it does not define who I am.

When you are caring for others it becomes difficult sometimes to care for yourself.

At the end of my day can I remove my mask, put it back on the shelf and enjoy myself, my family and my life?

What is it in life that makes me happy?
Who are the folks that bring me joy?
Who is the real me and what do I look like?

These are the questions that finally bring a feeling of freedom, joy and peace to my heart.

Can I begin to understand the interesting and accomplished actor who resides beneath the mask?

Will it help me to enjoy this part I am playing, meeting each challenging day with a sense of enthusiasm and discovery, knowing that this day, this moment (good or bad) is exactly what was meant to be?

Can I learn to enjoy this Game of Life?

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Lisa Peters is the parent of two children diagnosed with special needs. She writes more about acting in The Game of Life at her blog www.onalifelessperfect.blogspot.com. Please come visit to share our family experiences. Thank you for reading.

Firing our pediatrician.

Way back when I sent this letter to my pediatrician, it was to explain a situation I wasn't happy about. Our pediatrician of 10 years (seen us through 2 kids' kidney failure, dialysis for 1 and 2 kidney transplants). I faxed the letter twice because the founder of the practice did not respond to it the first time I faxed it. You know, benefit of the doubt and all that.

Then I was in the office a year ago and mentioned the incidents and the letter to the doctor – one of our favorites – and she assured me she would get to the bottom of it and contact me. Not a word. So, we got settled into school and fall and flu shots and so that's where those months went. Then we were there a lot because of fall sicknesses and one of the visits I was handed a survey for the visit before the (new) doctor came in and I was able to list my issues. I literally wrote “Generally I am not satisfied with the practice right now and considering leaving because of incidents in April I’ve tried to address three times.” (or something similar). I watched her hand write a note, attach it to my survey, and walk it to the founder’s door and leave it for her. I heard nothing from the founder.

Okay. Enough. I got it. I needed to fire our pediatrician.

So I interviewed 5 offices/people/docs. Of those, I found a small practice about 2 miles from our home. A front office staff person worked hard to get me in to see the doctor and completely understood why. I met the doctor and it was a really good fit.

I was so relieved it was official. Eight weeks, 20+ hours and it's done.

The Saturday after I met with the doctor I wanted to rush home and call the on-call service of our (soon to be) fired ped and tell them to copy the records. I thought better of it (they charge $15 for calls after 9pm) and called first thing Monday. Unable to get forms off their website (fail) I decided to go by there and fill out the form. I proudly, and rather largely, checked the box said we were going to a new practice. I paid my $25 (they will only copy them for free if they refer you to another doctor, whatever) and the front office person asked if I would stay and talk to the founder, because she should know.

We spoke for nearly an hour and she accepted 100% responsibility for the lack of communication about the incident (we were on the same page there). She said she dealt with it internally after she got the letter and she felt satisfied that the doctors involved acted appropriately about the situation; medically speaking.

I would have liked to talk that through, you know, because I didn't feel that way.

In her mind, it was "handled." She explained that she knew me well enough to know that she wouldn't be able to answer with a quick email or have an assistant call and that because she was working around the clock for (days and days and months and months and it was very dramatic) on a project for the practice she just didn't. She forgot. Then the other 2 times it was brought to her attention -- telling her I obviously wasn't letting this go -- she was embarrassed. But since the 3rd and 4th and 5th touchpoint I made, she'd seen us come in for care so she assumed everything was okay on my end.

Me: "Well I had to come in, the kids have been sick for weeks. I don't know any family that has special needs kids that can pick up and leave a practice without careful thought and planning. I couldn't just leave without a plan. This wasn't easy, in fact, having to do this created a hardship. Do you know how long it's taken me? I could be using my time to help my kids with their many other issues, instead of this. I clearly did not want to change, having given you 11 months."

She asked if I would reconsider. She pleaded her case well, but I had to explain that a level of trust had been broken. If she had reached out to me any time during that 11 months since the incident I would have likely stayed, instead it just festered. I told her she literally gave me no choice.

She wanted to leave the door open if things didn't work out at anytime if we are in need again for a peds office. Even if I had to change again, I wouldn't go back to the practice. We're at different places; she and I. I can't go backwards. It was good to speak my peace and when it was done and they were fired, it was good to be moving on.

I didn't realize how much it was stressing me out until I realized how good it felt when we left.

Here are the steps I used to finding our new pediatrician.

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Julia Roberts blogs at Kidneys and Eyes, Co-founded at Support for Special Needs, and she also writes at Aiming Low. 

Red

All autism mamas have those stolen moments - the moments when our children don't notice our presence fully - in which we are able to get a brief chance at closeness.  For me, these moments are few and far between.  My boy is a whirling dervish of activity the majority of the day.  If I try to catch him, even to do something like change a diaper, he is a squirming ball of motion just waiting for release.  The times when his little body rests, even just for a minute, are rare.

In the evenings, I get a couple of these stolen moments.  One occurs when Jack is playing his iPad - a reward for the hard work of the day.  He is anything but still as he taps his feet and flaps his hands, but he is momentarily in one place.  As he stands engrossed in whatever game has caught his attention that evening, I rest my cheek on his head and breathe in sweet softness of his blond hair.  It's heavenly.

The second moment is my favorite.  Jack has outgrown his changing table, but hasn't outgrown needing  to be dressed or to have his diaper changed.  So, we've moved his diapering/dressing routine on to the floor.  He's still in the crib, but once he's in a bed we'll move the routine there.

Before naps or bedtime, I lay Jack's "Red" out on the floor.  What is "Red", you say?  Well, Red is a Halo SleepSack.  Yes, Jack still sleeps in Halo SleepSacks, and they actually make them in larger toddler sizes - and hopefully they'll continue to do so.  SleepSack is a mouthful for Jack, so we simply call it "Red".  He has another one as well, which is appropriately called "Blue".

When it's time for "more Red", I lay the SleepSack out on the floor.  Jack flops down on all fours and begins a routine that makes me cringe; he starts to bang his head on the floor.  Now, I would really be cringing if it weren't for the fact that his room has a plush layer of head-cushioning carpeting.  For the moment, there seems to be no harm in the head-banging, and given his past choices in head-banging surfaces - like hardwood flooring and tables - I'll take the carpet any day.

The head-banging lasts for a few moments, as does a strange ritual of breathing in the SleepSack and rubbing his face on the fabric, but then his body lays still on the Red.  I lay myself down on the floor at his side, inching every closer.  Slowly I proceed, for I know that a sudden movement will cause him to push me away or flee.  I creep over until I can place a hand on his back.  At first, I keep my hand still, afraid to alert him to my presence, but then I gently rub his back.  I take in as much of the perfection that is my angel before he decides it is too much.

You see, I hear parents complain about the way that their kids want to only sleep in Mommy and Daddy's big bed, and while I grant everyone the right to complain about the things that are troubling in their lives, I can't help but feel a twinge of jealousy.  Why?  Because I've never been able to get Jack to cuddle up with me or snuggle me.  How I'd love to be able to take a nap with him or let him stay in our room when he's sick or it's stormy outside, but he won't have it.  He won't lay down.  He doesn't want anyone that close.  He'd rather be alone.

When he lays on that Red, I get a few minutes of just laying next to my angel.  I embrace every opportunity I get for any bit of closeness, because I know just how precious they are.  I lay there and wonder if he knows just how much I love him and how much I want to be a part of his world.  I await the day that he lets me cuddle just a little longer, or lets me hug him, or that he calls for me to not leave as I close his bedroom door.

Until then, the stolen moments will have to do.

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Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 3.5-year old little boy on the autism spectrum.  After her only child was diagnosed at 24 months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.  

When not posting here, you can find Jeanie at her regular blog, Reinventing Mommy.  She has also been featured on The SPD Blogger Network and The Oxygen Mask Project, to name a few.  To follow more of her ramblings, like her on Facebook or follow her on Twitter!

My Downfall

(image taken from A Diary of a Mom)

There are few things that cause me as much anxiety as an IEP Meeting.  I've now sat through at least 10, but things never change.  I'm always terrified going in.  I always expect things to go badly.  I always anticipate that there are more problems than anyone knows how to fix.  It never happens that way, but that's what I envision.  Then I have to go home and start the process all over again.

That's what I'm in the middle of right now.  Ballerina had her review meeting on Wednesday this week since she's been in school for just over 7 weeks.  Her preschool program design was 1-on-1 with a strong ABA focus (some students spent upwards of 4-5 hours/day [out of the 6 they were there] working at the table doing ABA trials).  But Ballerina had spent much of last year practicing being in a pre-K or a Kindergarten classroom with her NT peers.  But she still had that support behind her.  She still knew that if she didn't behave, there was a safety net to catch her when she fell.  Now that she's in a general education Kindergarten classroom, that safety net has been taken away.  She's in a new school with new faces and new policies and procedures.  "New" is not something that Ballerina does well.  I knew that she had been having problems making the adjustment, and as a team, we needed to sit down and strategize how to make this work for her.

When you walk into the school office on IEP Day, you see the team in the meeting room.  They're talking about your child without you.  What are they saying?  What decisions are they making?  Are they discussing strategies to convince you (as a parent) of things that they want to do when they know that your opinion doesn't match theirs?  This is what my sleep-deprived mind comes up with (because I never sleep well before an IEP Meeting).  But eventually, they call you in to join the discussion.  And, if you are like me, you realize that your opinion DOES count.  They want to hear what you have to say.  They want to work with you to make your child's school story a successful one.

This is what happens for every meeting I have attended to date.  It was even true for yesterday's meeting.  Yet I do this to myself every single time.  It gets to the point where, when I have a few moments to reflect at the end of the day once the meeting is done, I realize I had spent the whole day holding my breath and feeling my chest and stomach twist themselves into tight knots.  I find myself talking myself down......"They're not out to get you......They're here to help your daughter......You're working together as a team!".  I tell myself this, not something to calm me down, but because it is the truth.  We have been very lucky to date in this fact.  The school really wants my children to succeed.....almost as much as I do.

But you know what?  I have another meeting next week (Tuesday) for Music Man.  This will be his annual review meeting.  Because I've been focused on Ballerina, I still haven't gone through the paperwork that was sent home.....the draft IEP, the teacher report, the progress notes.....none of it.  And I've given myself Thursday off because of how I felt after Ballerina's meeting.  But I can already feel it all starting again.  I know this school and the administration.  Most of the people working with Music Man are the same individuals working with Ballerina.  I know they want to see his success.  But it's still walking into an IEP Meeting.

It's still a nightmare realized.

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My name is Ilene and I'm a happily married and sleep deprived SAHM raising 3 amazing children.  My older son is a typical second grader who loves to play soccer, spend time with the Cub Scouts, and play video games.  My other two children are just as amazing, but they have their own unique issues.  They are 5 year old girl/boy twins (Ballerina and Music Man) who are both in Kindergarten, and who both have Autism.

I blog whenever things feel like I should blog, which is quite often.  I write about whatever is on my mind, I try to advocate for my own children and offer advice to others (when they ask), and I share our stories.  If you would like, you are welcome to visit my blog or come to the Facebook page that I administer.

Thanks for reading my stories.

Little Steps for the Big Goal

Hi,

usually I give the link to this blog on my blog... This week I will do a little bit different... I will link you to my blog... Latest news from my country... :o)

Little Steps for the Big Goal 

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Petra is a Writer, Mum of Two, Wife to One, Full Time Employed Woman... Warrior for a better Future for her child with Autism and for the one without. 
She blogs at http://foraoisdarach.blogspot.com

Big Boy Bed

Recently saw a picture on Facebook when I was screwing around  catching up to see what all my family and friends are up to. My friend Kim (you can call her Kimmy Pie) showed her sweet 2-year-old boy in his crib for the last time. They are moving him up to a "big boy bed." She had spent the day crying.

I get that. It is bittersweet when our children move from one stage to another. We want them to grow up, that's what they are supposed to do, but it's hard at the same time. We mourn the loss of what they were and often times worry about what lies ahead. That is true, I believe, of all parents. We special needs parents feel the same way only on steroids.

Sometimes it seems that the growth and development of our kids is glacial. Then something happens, usually something small and surprising, to show us just how far indeed, they have come.

Happened to me last week at the paint store. My husband and I tried to hang some new art in our "sitting room." Let's just say there are more holes behind the pictures than we intended, and one way off to the side that still has an abandoned hook in it, driving me to utter distraction. I am unable to focus on the new slipcovers and four pieces of beautifully-framed original art. All I see is that hook that's there and wasn't supposed to be. We've left it there for two months because removing it will involve filling the big hole that it will leave, patching it, and re-painting. All things we could have done before breakfast in our past lives, but which tend to overwhelm us now. Eighteen years of parenting, sixteen to an extremely hyper special needs child, has taken a toll. We are tired.

At last, I mustered up enough energy to dig out the information on what color paint we'd used in that room, took my information up to the local paint store and requested they mix a quart for me. I gave them all the numbers I'd written down from the various cans in the basement before properly hauling their asses to the metro hazardous waste center. The paint store looked over my scrawl and found a number they thought must be it. Then the nice gentleman went into a back room coming back with a 3" binder and lo and behold, turned right to a page with a sample of the color. MY color. As in the information said "Link 10/03." I was highly impressed as no computer was used at all, this man, within a minute, found my information from nine years ago.

I thought about how much has happened in this house in the nine years we've been in it. The way and the reasons why we decorated Rojo's bedroom back then. Then it struck me, we haven't done a thing to change it. He was seven when we moved, in first grade. He's now a sophomore in high school with the same NBA basketball duvet covers on the bunk beds. He's got the same book case with the same picture books and a handful of chapter books. He's got the same framed art his class made him in first grade.

The boy is 5' 10 1/2'. Soon he'll be six feet tall and will most certainly outgrow his bed. I have now warned both Rojo and my husband, both of whom need to be warmed up to ideas over a long period of time, that we will be doing a big room makeover. The boy needs a queen bed. He needs to lose the bunk beds. He needs to have a whole different set of books on the bookshelf or no books at all. Make that no books at all. He is never going to grab a book off the shelf and sit down to read for pleasure, it's time to let go of that dream. It's time to let the room truly be his room. It needs to reflect his current age, his present interests and really represent him.

I can't wait to see what he chooses.


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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at http://carrielink.blogspot.com/ where this is pretty much her favorite topic. 

Far and Wide

Last month, an old high school friend sent me a message on Facebook. Here is a slightly edited version, with names changed to protect privacy:

I've read your Facebook posts about your son and your autism activism. I've been a middle and high school math teacher for 17 years now and have certainly taught my share of kids all over the spectrum. This year I was pulled out of important professional development for a 2 hour autism training/parent conference because I would be teaching Rick, an autistic sophomore this year (all of his teachers were required to attend). My first reaction was to be annoyed, not because I was receiving training, but because I have already been through extensive training and had many years of experience. I got the feeling from emails leading up to the meeting that these were over-involved, entitled parents (we do have quite a few of them in the town where I teach). What kept my mind open was you.  

I have 2 kids of my own. They have certainly changed my perspective on teaching and communicating with families. However, your voice, as an advocate for kids like Rick and your son, resonated with me.  

I've approached teaching Rick more thoughtfully than I otherwise might have because of your voice in the back of my mind. 

So yesterday, Rick cursed at and threatened the life of 2 lunch ladies in the cafeteria, threw a chair and his lunch, and stormed out of the cafeteria. While the principal and I tried to convince the ladies not to press criminal charges, my heart went out to him, his parents as well as to you and your son.

Needless to say, I was moved. As the parent of a child who is only five but can be quite impulsive and aggressive, it is not hard for me to imagine my own child someday getting into serious trouble. And I am proud that my words affected someone enough to approach a difficult situation with thought and compassion.

But it also made me think a little bit harder about what I do as a parent and as a blogger.

My friend used the terms "advocate" and "activism." Although I advocate for my son's specific needs, I've never thought of myself as either an advocate or an activist for other autistic people. My blog was meant to do a few things: keep friends and family updated on my son's progress, serve as an emotional and therapeutic outlet, and be a conduit for connecting with other parents with special needs kids.

This last reason, connecting with other parents, as well as connecting with some autistic adults, has been the reason I continue to blog. Parents of special needs kids are busy people and the few in-person support groups I have found are not at times I can attend. So I found my tribe online. They are a generous, knowledgeable, and uproariously funny bunch. And it is wonderful to converse with folks who are right there with you, who, as we like to say "get it." Someone is always available to have a virtual drink and let you vent for a minute without judgement because they know you love your kid; it goes without saying.

But what about everyone else? Because when we blog, we tell our story to anyone who chooses to read it. I had no idea my high school friend read my blog, let alone that my words would stay with him for any length of time. With the exception of a few regulars (hi Mom!), I have no idea who any of my readers are. And so, whether I like it or not, I represent one tiny sliver of the autism community to whoever stumbles across my blog.

For me this means first, that my words really do matter. If I say "autism sucks" those words are not only hurtful to autistic people, but also reach people who might not know anything about autism beyond stereotypes and mass media portrayals. They may not stick around long enough to know that I also love my child with the ferocity of a mountain lion, or that I am using those words as a shortcut for "my child's sensory needs are making it really hard for us as a family to leave the house safely." You know that, but someone else may not. I'm not saying don't be completely honest. I'm not telling anyone to check their words to please anyone else. Speak your truth however you see fit, but remember that you don't always know who is listening.

Second, if we, as bloggers and parents, want to see a world that not only accepts but embraces a neuro-diverse culture, that does more than just accommodate disability, we need to do more to find an audience beyond ourselves. It is comfortable here, but we need to reach further. I don't know exactly how we do that. In part, I think it means we always have to share the good stories too, the smiles and achievements. We need to write with honesty and integrity. We need to be smart and tell compelling stories that also happen to involve someone with a special needs. But we need a bigger platform, and we need to make sure that adults with disabilities are on that platform.

Most of all, we need to keep writing.


Have thoughts on how bloggers who write about special needs can reach a bigger audience? Have a story about a time your story reached someone outside of the special needs community? Please share in the comments!
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Jen Bush writes about raising a five year old on the autism spectrum and a typical three year old on her personal blog, Anybody Want A Peanut? You can follow her on Facebook.

Kindred Spirits

Families with autism (and other "invisible" special needs) are all around us, everywhere, everyday. I never used to notice them, specifically, pointedly, until we became them. And now I can't not see, not try to connect whenever possible.

When my kids were little still, my eyes would always be drawn to the boy apart, walking the perimeter of the playground, hand bumping along each link of the chain link fence, on his toes, eyes cast down; to the girl tearing her dress off, rolling in and eating sand, screeching one octave higher and louder than any other kid in the playground but seeming deaf to her mothers words.

I saw, I knew, but I always wondered: "Did the mothers know?" Wondered if I could say something, connect, or if they were pre-diagnosis, living in their little bubble of denial. I had lost a friend opening my mouth before the mother was ready to hear. Some days I would hesitate, others I would venture a question, a comment. Connections were made. Or not.

Now I barely notice the young ones, my time in playgrounds having come nearly to an end. Instead I am pulled to the really big ones, older a bit than my tweenie ten year-old Jacob, the mothers all middle aged like me, holding the hand of a son who is clearly too hold to still be holding his mother's hand. Except, well, for THAT.

Sometimes we smile at each other, acknowledge our unasked for kinship. Other times I silently observe, wondering, "Will that be us in a few years time?"

And then, sometimes, we end up needing each other.

This past summer I took the boys to a WNBA basketball game, the NY Liberty playing in nearby Newark. We had a great time, and after the game lined up for one the large family / disabled bathrooms, thankfully present at the arena.

After I got on line, I noticed the woman who came on right behind was one of "us" with a son: older teenage or young man, clearly on the spectrum, less verbal than my son Jacob. She was desperately in need of a bathroom sooner than later, I could see it in her eyes as I watched her look at the short line we were on and grimace.

I offered to let her cut in front of us, as ours was just a routine "go before you go" visit, but she didn't even have that moment to wait. I could see her weighing the alternatives.

She needed to go herself. Needed to keep her son safe. Couldn't really take him into the women's room with her, which was about 50 feet further along. There was a TV on the wall right next to us, and her son was definitely interested in it, watching rapt as we stood in line.

Seeing that her son was much more likely to wait in front of a TV than outside the boring women's room door, she told him to stand RIGHT THERE and watch TV and wait for her return. He agreed, and she ran off down the hall.

The boy was still dutifully waiting when we popped into the bathroom, but by the time we came out, he was no longer in front of the TV.  I assumed the mom had come back, but just in case she hadn't I scanned the area to make sure her son had not wandered off, and yes, there he was - about 20 feet away in the opposite direction, in front of a large window, looking out onto the street below.

I looked up to see the mother barreling down the the hall towards us, moving fast as she could to get back to her boy, panic setting in as she sees her son is not where she left him. I ran up to intercept her "He's in font of a window, over here, this way!" and I lead her to him.

She went back and forth between thanking me and gently admonishing her son to not DO that again, please. We chatted briefly about our kids, our challenges, parted with mutual smiles

And then, as we headed off in opposite directions to find our ways home, I found myself sincerely hoping that if that is ever ME some day, frantically searching for Jake, another mother will step in to help; will understand, without having to be told, how important it is.

Community is all around us, everywhere, every day, if we only look, connect and respond.


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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.

Happy 1st Birthday To My Little Survivor!

She was born at 26 weeks.  The doctors told her biological family that she had a 5-10% chance of survival.  But no one told Cary that.  Despite having massive brain hemorrhaging, not being able to draw breath, and having to live in the PICU from October to May my little girl did something amazing.  SHE LIVED.

Not that it was all rainbows and sunshine.  Three days after she came home to live with us we were back in the PICU once again.  Here she is looking really really little and drowning in a hospital gown:

We were kept in the dark about most of her conditions as adoptive parents.  At the hospital we were brought into the light.  In a very rude and abrasive way.  We heard new terms like Diabetes Insipidus, Cortical Blindness, Hydrocephalus, Global Developmental Delays, Medically Fragile, and GI tube fed.  She nearly died again.  It was a scary time.

But then I heard a new voice.  Hope.  It came in many different forms.  A janitor, a doctor, a nurse, friends, a chaplain.  My daughter.  You see, no one gave her the memo that she was supposed to die.  She fought death twice and won.  My daughter is feisty, brave, and strong.

Now she has reached a new milestone. She is one.  And here she is now.

We still have a long way to go. She still requires a lot of time, care, and attention.  But she is alive.  And for that I celebrate.  Happy Birthday Cary. May you have many many more.  I love you.
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Amy Fields is a mommy to two adopted special needs children.  You can find her at her blog Many Kinds of Families.  

ToDay

Today I felt the enormity of parenthood overshadow all else.

I abandoned the uncooked chicken in the kitchen when my eight-year-old son, who has autism, asked me, “Am I mentally retarded?” I asked my daughter to abandon her homework so the three of us could talk about words, inclusion, autism, what it means to have special needs, and what “the r word” is all about. We talked about respect, and love, and family.

Eventually we ate dinner.

I ate mine in fits and starts, alternately wanting comfort from food but then feeling sick to my stomach because I knew of a family who lost a son today, and could only think: how can we eat, how can we cook, how can we put one foot in front of another when someone has just lost a child?

Today I arranged an IEP. Today I signed a waiver so my son can do special needs surfing. Today I cried. Today I thought about my kids and yours, raising kids, being a kid, sick kids, kids who struggle, lost kids...

Everything I saw, tasted, heard, felt today reminded me of the enormity of parenting, the fragility of life, the preciousness of time.

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Rooster's Mom is a parent, educator, wife, mom, and writer. She blogs at roostercalls.blogspot.com.

You've been awesome company...

I published this on my own blog last week, and I'll re-post here now.

I have been honoured to be a member of Hopeful Parents for the last couple of years. I'll still be here reading everyone else's words, but I've decided to cease blogging myself.

Here's my final post.

I'm not sure where to start...

I think I'm done blogging about autism.

There we go. That's a start.

I'm not much of a systematic thinker, so I'll just make a list. It won't be a long list, I promise.


1. I'm over it.
(the most pathetic reason)

My feelings about writing here (and elsewhere online) have changed, pretty much overnight, though I've been chewing them over in my mind for a month or so.

I've spent three years sharing stories about Billy and our lives hoping it might guide one person towards any one of the a-ha moments I wished I'd had along the way. I'd like to think that did happen a few times. But right now, I'm either whining or repeating myself.

Even I am bored with the sound of my own voice.

I have no access to policy change. I am not mates with any politicians. I have no inroads to make medical change.

I have come to believe I am dancing in a long tunnel, and as enjoyable as that has been, I'm not Alvin Ailey.


2. It's too hard all of a sudden.
(the most upsetting reason)

The viciousness and vitriol in autism world, right now, is too much for me.

Plain and simple.

It either didn't bother me before, or it didn't happen before. I'm not sure.

It bothers me now.

It bothers me that some people tell me there's no way I can love my child.
It bothers me that others assume I don't value my child.
It bothers me that people give me unsolicited advice that assumes I have not thought about whatever they are talking about.
It bothers me that people confect stories that draw attention to themselves with no acknowledgement of the responsibility inherent in sharing those stories.
It bothers me that when disagreement occurs, I would rather argue the point, not the man, but that is rarely what happens.
It bothers me that the level of discourse is often reduced to 'you believe (insert anything)', so 'you cannot possibly understand (insert anything else)'.
It bothers me that people tell other people what to think or say or do, as though we all agree on what is right.
It bothers me that anyone with an opinion is fair game for people with an opposite opinion.
It bothers me that people want to bring other people down by somehow proving their reality to be untrue.
It bothers me that truth, in this game, is elusive and compromised and that concept goes unacknowledged in a lot of what masquerades as 'discussion'.
It bothers me that any of this bothers me at all.

I could be doing so much more than being bothered by things and people I have no control over. Over which I have no control.

The whole preposition thing bothers me too.


3. Autism is getting worse, not better.
(the most depressing)

It's having more of an impact, not less of an impact in our lives, and in the lives of most people (if I'm genuinely honest). It has not gone away in any sense. For us, it has become more serious as time has gone on. We are facing a future that no-one prepared us for, no-one even mentioned as a possibility.

It is our life, and so it is wonderful. But it is also deeply confronting and serious and unpleasant.

Being told this is trivial, or irrelevant (as happens with phrases like 'you should just calm down and enjoy him', or 'we're all a little quirky', or 'you can't love your child if you hate autism') is seriously the hardest thing I've ever had to hear.

I need some distance from that. Not distance from my life, or my child - distance from the proclamations of people who are speaking about themselves, and not me or my child, but are not aware there's a difference.

I've always tried to use Billy's life as a springboard for thought, here. It's not universal fact. It informs the way I think, but it has never limited the way I think. It's clear to us that Billy is atypical in many ways (and I say that with no value judgement attached), so making him some kind of poster boy for autism would never have made sense. Making any one a poster child for autism would never never make any sense.

In addition, in this country, at least, I am overwhelmed with the lack of insight and the lack of real, meaningful, compassionate action in regard to autism.

I see lots of people fighting for their moment in the spotlight, some with more altruistic motives than others. I see lots of people spruiking services that are of limited use and are increasingly both gut wrenchingly expensive and backed by questionable, yet 'endorsed', evidence. I see the medical fraternity distancing themselves from the medical nature of autism, only accepting it when the crisis has already occurred. I see more and more kids being left behind in the education system because their needs are too unique for the mainstream and not eligible (or appropriate) for the special needs sector.

It's dragging me down.

It's not a game, it's a reality for us, and for so many people we care for. It is becoming more confronting, medically and logistically, to live it. Our kids are getting older, oddly, and words like 'quirky' and 'different' and the need to tell people to celebrate those things have sunk further and further away from our daily hierarchy.

Those sentiments have become Hallmark cards, and there are plenty of people selling them.

I can't say any of those things in a new way, and even if I could, I wouldn't. But that's because we, as a family, have been catapulted well past them. If Billy was already an independent adult seeking acceptance and understanding, I'm sure I'd be right there wearing the t-shirt.

I'm happy others have that message in hand, because as things stand, it is the smallest of our concerns.


4. It's not the same as it used to be.
 (the last one)

By 'it' I mean the blog, the online experience of autism, the reason I found myself rabbiting on in the first place.

Online boards used to be crucial to me. They were, literally, the saviour in the middle of many frightening, confronting, dark nights. They were my lifeline, and the source of so much new and useful information. The women and the children from those boards remain incredibly important to me, but the information is no longer the primary reason for my logging on.

Facebook has a different menace. I still learn a huge amount, and treasure the generosity and passion of people, but it's not like it used to be. The cameraderie is gone, in many ways.

And here's why I think this has happened, in my life at least.

We were all, in many ways, a part of a new social (media) movement.  Trying to explain the concept behind The Autism Experience to my mother, was like her explaining the metric system to her own mother.

'You are writing a book with people you have never met, about children you don't know and a condition no-one really understands... ooooooh kaaaaay, dear...'

We were all full of energy and enthusiasm, and our children were mostly at a similar age (seriously, what happened in the world to hit kids born from 2000 or so onwards quite so hard?). We had a lot to talk about, a lot to learn and a lot to hope for.

Flash forward five years or so, and it's a very different story.

The kids have grown to inhabit very different places on the spectrum, even very different places on the health spectrum. We all drank the same (or similar) kool aid, and the results are remarkable in their lack of similarity.

Maybe, it's harder and harder to 'help' each other, when our children are seemingly living with different conditions. I'm thinking they were probably quite different when they were tiny too, but we weren't being encouraged to see them that way. Handling a two year old's speech delay, is handling a two year old's speech delay, until the speech comes or doesn't and you deal with what you've got, if you know what I mean.

Right now, though, in The Autism Experience cohort alone, we have every kind of autism story you could hope for, and there are so many conflicting emotions tied up in 'sharing' the way we used to. And that's before we get to the philosophical, medical, political, cultural differences between us.

I want to be a part of autism world because I care about the people that I have met along the way. I care about the fact that our numbers are growing and no-one in a position of responsibility seems to be demonstrating much care.

But most of all, I care about my family.

Every single fibre of my being right now is saying, 'do not turn your back on this'.

And yet, 'this' has become something I don't understand anymore. I don't know what autism is, I just know it's not a roll of the dice. If it was, a lot of us would be scared off board games for life.

There is not point in blogging about something I do not understand. That would make me one of the people that bother me. It makes me complicit in the very behaviour that bothers me. It makes me a part of the spin machine that is diluting a critical message.

Here is what I tried to impart in three years of blogging. In one paragraph.

Autism is a giant issue and it's getting bigger. Whether it's the quirky and misunderstood end, or the severely physically and intellectually disabled end, or anywhere in between... for now, it's all the same condition. It might be preventable. All of us sitting on our hands, defending our own patch is one thing, but the change required to get a handle on the condition is huge. Whether we think it's something to welcome, something to curse or something to tolerate - autism needs serious amounts of resources that do not exist currently. The work that is required to establish these resources is immense, too immense for me to conceptualise, but there is no denying it.

I've loved being in contact with you all, but the fish in our frying pan are threatening to jump.

Lest I start bleating, or blubbering, let me say goodbye (and thanks for all your fish).


Here's my unsolicited advice, in case you are new to the game, or a glutton for punishment.

 - If you don't already, read Age of Autism, read A Diary of a Mom, read The Thinking Mom's Revolution,  read John Elder Robison, follow Autism One, keep up with Generation Rescue, listen to Tony Attwood, keep up with Dr Jerry Kartzinel and Dr Martha Herbert, go back and read Natasha Campbell-McBride and Jacqueline McCandless.

(nb. if these links don't work, they are live at here)

 - It is not required that you agree 100% with anyone or do what they say, but it is required that you respect them and everyone else you meet along the road.

 - Be nice. It's like organic food. It helps, even if there's limited proof.

 - Get over yourself and your own story. Yours is not the only story, and everything can be gained from acknowledging that you are sharing this road with a diversity of people with a diversity of needs.

 - Listen to your gut. No-one knows everything, but you know a lot about the things that matters the most. The rest, you can Google.

 - Put the autistic person you know first, yourself and your family up there beside them, and all the other stuff somewhere behind.

 - Don't let the turkeys get you down. It'll make you do stupid things like this.


I've got a few plans and a few ideas, and they may end up somewhere in cyber space or air space or real space, but... the rollercoaster has ground to a halt.


If only that was true of our actual lives...




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Valerie packed away her blogging fingers. 
She's playing a lot of Words with Friends at the moment, wondering what just happened.

What Do Families Need?

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Lauren Agoratus

After everything we’ve been through this year (five life-threatening hospitalizations) I keep thinking about what families need.  The answer:  It depends on the situation.

If the parent is just getting a diagnosis, they need information on the condition and emotional support.  The best source I found is Exceptional Parent magazine annual resource guide which lists all the national groups.  I called all the organizations listed under kidney disease when my daughter was born and when she was later diagnosed with autism at age 7, it was the first place I looked again-despite the fact that at that point I was an advocate.  I felt like we were back at square one and I didn’t know my child.  For detailed information including research, databases, literature etc. the Maternal & Child Health Bureau has “Knowledge Paths” on some conditions.  If your child has something really unusual, I also highly recommend the National Organization for Rare Disorders.  For emotional support, I’ve personally used matching groups like Parent-to-Parent, Friends Health Connection, and Mothers United for Moral Support.

If families are dealing with struggles in the healthcare system, they can contact Family Voices for children with special needs and/or Family-to-Family Health Information Centers.  They can help with Medicaid, how to get SSI (supplemental security income), insurance denials, etc.  The American Academy of Pediatrics also has a website for families for general health information, including special needs.

If parents are struggling with educational issues, they can contact the Parent Training & Information Center in their state.  They can get help with preschool, developing IEPs, afterschool care, and accommodations in other areas like camp.

I also want to mention mental health as an area of concern.  This could mean that the child has challenging behaviors or that the parent needs support.  Knowing that you need support is actually a sign of strength, not weakness.  According to the National Family Caregivers Association, 75% of caregivers have suffered from depression at some time.  Families of children with special needs may not see themselves as “caregivers” since all children depend upon their parents.  But are other parents doing all the things you do?  How many of them are still diapering their 5 year olds or giving them babyfood? That’s when I realized I had an extra role.   How many families will be doing this for their child’s lifetime?  I’m not saying this to be negative but so that parents realize they wear an extra “hat” as a caregiver, not just mom or dad, and they need more resources.  During hospitalizations, the hospital social workers can help families deal.  The National Alliance on Mental Illness has helplines, speakers, and classes for families.  Also support groups can be extremely helpful.   

I can’t tell you how many families I saw crying in the hallways of the hospital over the months and even though my own daughter was in ICU, actually coded, and was resuscitated several times, I kept wishing there was something I could do to help without invading their limited privacy.  It is my hope that Hopeful Parents reaches some of them out there.

Remain hopeful,

Lauren

 

Resources (all free except the magazine)

Diagnosis

Exceptional Parent magazine www.eparent.com

Maternal & Child Health Bureau www.mchlibrary.info/knowledgepaths

National Organization for Rare Disorders www.rarediseases.org/rare-disease-information/rare-diseases

Support

Friends Health Connection http://friendshealthconnection.org

Mothers United for Moral Support http://www.netnet.net/mums/database.htm

Parent-to-Parent www.p2pusa.org/p2pusa/SitePages/p2p-support.aspx

Health

Family Voices (children with special needs) www.familyvoices.org

Family-to-Family Health Information Centers www.familyvoices.org/f2f-grantees

American Academy of Pediatrics (family site) www.healthychildren.org

 

Education

Parent Training and Information Centers www.parentcenternetwork.org

Mental Health/Caregiving

National Alliance on Mental Illness www.nami.org

National Family Caregivers Association www.thefamilycaregiver.org/improving_caregiving/depression.cfm

Support groups-American Self Help Clearinghouse www.mentalhelp.net/selfhelp