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. 

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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.