Jun 11

Go ahead, freak out

Let’s face it. You weren’t expecting ADHD, Autism, bipolar disorder, FASD, or any health issues classified as a neurobehavioral disorder. No one does. It comes at you suddenly, from behind, and with great force. It’s more than being blindsided; it’s like falling out of the boat, without a life-jacket, and without knowing how to swim. Oh, by the way, there are piranhas under that dark surface too. It’s unexpected and terrifying.

So what do you do when you’re not expecting a developmental or neurobehavioral diagnosis?

now_panic_and_freak_out__by_jweinstock-d3hvgozFreak out!

Go ahead. I’m not kidding. Freak out! Panic! Have a pity party.

Feel sorry for yourself, your child, and your family — it’s natural. Take some time to wallow in the fact that your in-utero plans for your child’s future have possibly changed altogether. I know that’s not the advice you expected, but you have to acknowledge and validate those feelings so you can move beyond the shock and grief and eventually reach a good place.

When you’ve cried until there are no more tears and taken in the “Why Me Monster” as though he is your new BFF, come back to the real world and start researching to discover your next steps to get on your way to successfully parenting a child with neurobehavioral special needs. Take as long as you need — there aren’t rules for this and the information will still be there when you’re ready.

First Things First

Okay, stop panicking now. While it feels like it initially, a behavioral disability diagnosis is nothing to panic about. In fact, I challenge you to celebrate the impending clarity that comes with diagnosis. There’s a certain amount of relief to finally knowing why your child is struggling.

There is one essential thing to remember when your child is first diagnosed. You are not alone. Say it with me, “I am not alone. I am not the only parent who struggles with this special brand of parenting.” You may even want to post it on your bathroom mirror and treat it like a personal affirmation for a while. It certainly won’t hurt. Parenting a child with special needs can be very isolating so you will need to consistently remind yourself that others know a similar journey.

Acceptance of your child, just the way they are, is crucial, now more than ever.

Grieve the Loss

I’m sure you visualized your child gloating about their latest “A,” or crossing the stage during college graduation at some point during your pregnancy or adoption process.  It’s an innate instinct to want the very best for our children and to visualize their life’s milestones very early.

A special needs diagnosis often initially feels like an abrupt end of many of your dreams for your child. Finding out your child has a disability establishes the possibility that all your dreams for them may not come true. But it doesn’t mean their dreams aren’t possible.

Let’s face it, receiving an ADHD, Autism, bi-polar, FASD, learning disability, etc. diagnosis for your child is tough. No, it’s not a terminal illness or a physical handicap, but that doesn’t mean you shouldn’t feel sorry and grieve. Your pain is valid, even if it isn’t as intense as someone else’s. You just found out your child has a neurological disorder — that something didn’t quite go right when their brain was developing — and that entitles you to a period of sorrow. If you weren’t upset about it, that would be something to worry about.

It’s natural to grieve when your child is diagnosed with any disability. Your world has changed — either your expectations have been shattered or you have come to the realization that the madness chaos is here to stay, at least somewhat. While it’s necessary to go through that period of grief, you also have to get beyond it. Feeling sorry long term doesn’t help the situation one bit.

Take a little time to be sad, angry, scared, heart-broken. Sit in a room alone for a couple days. Take a bubble bath until you shrivel. Cry. Scream. Recoil. It’s okay to be irrational for a few moments and let these feelings surface.  It’s even healthy, dare I say. Take a few days, maybe a week, to process and work through your feelings — then move on because wallowing is not going to help you or your child.

I sat in front of the T.V. alone in my bedroom and stared out the window for a couple days after my son’s ADHD diagnosis. I cried a lot and I have a faint memory of eating lots of ice cream. I tried not to think about ADHD, yet it was all I thought about for days. Years in fact, if I’m honest with myself.

Gratitude and positivity are the only roads to genuine happiness. For that is how we survive, and eventually thrive. It is easy to feel hopeless when parenting a special needs child. I decided wallowing in my sorrow wasn’t doing me, my son Ricochet, or anyone else any good. Denial and tears were not going to erase his ADHD and they weren’t going to teach us how to do the best for him either. So I chose to direct my compass toward the positive and I moved on to gathering knowledge, the next crucial step.

(Image from jweinstock on deviantart.com.)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
You can find Penny Williams’ books on Amazon:

Jul 26

Technology Bridges Autism: Carly’s Voice

Carly Fleischmann was unable to communicate. Diagnosed with autism and related disorders by the age of two, she screamed, threw herself to the floor, smeared feces, moved constantly, and barely slept at night. An attentive family plus hours of daily therapy helped teach her rudiments like walking and feeding herself. Experts advised her parents to consider residential care.

But one day during a therapy session when she was ten years old, Carly reached for the computer. Slowly, using one finger, she typed

help

teeth

hurt.

Her therapists were astonished. It took months and much coaxing to get her to use the computer again (at that time, an augmentative communication device). But she began to recognize that communication was essential. Technology made it possible.

What emerged from her arduous single strokes on the keypad showed a girl who wasn’t mentally retarded, as her doctors suspected, but someone spirited, insightful, and intelligent. She wrote about wanting to have fun with normal kids. She asked to do things she’d always wanted to try. And she tried to convey what it was like to live in an autistic body. She explained that behaviors (like banging her head on the floor and bleating loudly) erupted from her like liquid would burst from a can of Coke when it had been shaken and opened. She said those behaviors helped block the sensory input of sight and sound that constantly overwhelmed her.

A few years ago, a segment about Carly’s new-found communication aired on 20/20

Now Carly uses technology to communicate with a world that’s ever more open to her. She keeps up with a busy Twitter  feed and Facebook fans. She answers questions, promotes autism awareness, and says that she feels part of a larger community by connecting with people through social media.

Technology allows Carly to share what she calls her “inner voice.” Check out Carly’s Cafe, an interactive web video, to experience a coffee shop as she experiences it. And take a look at the memoir she wrote with her father, Carly’s Voice: Breaking Through Autism, to better understand this bright engaging girl whose world unlocked thanks to a keyboard.

Jan 03

Mother of an autistic son tells a story we can all relate to

I hope you’ll excuse me for being a bit off-topic with this post. A mother from Riverton, Wyo., with a 21-year-old autistic son called me at work the other day to inquire about possible grants for her son’s new business. Her son, Leonard, had discovered a passion for carving walking sticks from downed tree branches. He’s started his own businesses, Autisticks (nice play on words), and it’s been going great guns, with most sales coming by word-of-mouth. As Leonard’s mom, Debra Williams, told me the story of raising her son, it reminded me a lot of the personal stories we’ve been telling on these pages (and in the book). He’s easy to love, but…. Debra has always been on the lookout for a positive outlet for her son’s obvious talent and enthusiasm. Carving and decorating these walking sticks seems to be the answer. Links to a newspaper article and a radio interview can be found at my work blog, wyomingarts. Happy new year, everyone.

May 20

“How to be a Sister” by Eileen Garvin

I had the pleasure of meeting Seattle author Eileen Garvin at the reading and book signing for her memoir, How to be a Sister: A Love Story with a Twist of Autism, at Village Books in Bellingham, WA. Her book addresses her life growing up as the neurotypical youngest of five, with her slightly older sister, Margaret, affected by severe autism.

Eileen read a particularly funny passage from the book, which she also mentions in her recent interview on Rosie O’Donnell’s radio show, in which her mother and sister met her for dinner at a nice restaurant in Seattle while she was in college. Eileen’s sister Margaret was unable to appreciate the servers singing, the special draw of the unique restaurant. I won’t spoil the story, but do listen to the radio interview and read the full story in the book if you can. If you have a child or sibling who suffers from a disorder that affects behavior, you will find it oh too familiar. Eileen is gifted at identifying the humor in each difficult situation.

Eileen’s book addresses the scarce understanding of autism at the time of her early childhood some 30 years ago. She says that the book chronicles how her relationship with her sister changed over the years as they’ve grown and how they were able to forge a new connection as adults after Eileen went away to college for several years. She wrote the book because there are very few resources available for neurotypical siblings. She said, growing up, siblings often feel overshadowed by the energy and effort that their sibling’s disorder demands from the family.

Eileen was a pleasure to meet and her writing is thoughtful, clever, honest, and full of wisdom. I do recommend it to any parent or sibling of a non-neurotypical child. Her book is available at Target stores and on-line.

Lorraine Wilde is a freelance journalist, environmental scientist, and mother. Her work has appeared in Entertainment News NW, Ithaca Child, and on the parenting web site Neighborhood-Kids.com. She is writing her memoir, and also blogs at My Wilde World.

Mar 31

The Power of Social and Sensory Stories

My 7-year-olds struggle with a metabolic disorder, pyroluria, and a neurological disorder, Sensory Processing Disorder (also called Sensory Integration Disorder). The intervention that I’ve found to have the most tangible impact is Social & Sensory Stories. Please be aware that I am not an occupational therapist or a trained professional. I’m simply a parent using and sharing a modified technique that has worked very well for us. Please ask your occupational therapist if this therapy might work for you and use at your own risk.

Sensory and Social Stories are among the many valuable services that occupational therapists traditionally provide. These stories have also been shown effective for individuals with autism spectrum disorders (ASDs) including autism, Asperger’s syndrome, and pervasive developmental disorder. 1

Social stories were first developed by Carol Gray in 1991 and have been expanded and modified widely.2 Sensory stories were developed by Deborah Marr and Victoria Nackley in 2003.1

Social and Sensory stories are similar in that:

  1. their goal is to teach social skills, improve understanding, and reinforce appropriate behavior or performance,
  2. they work best if written from the child’s perspective, in first person (example provided below), and
  3. they may or may not include photos of the child performing the desired skill or behavior.

Social stories and sensory stories do differ slightly. Social stories attempt to teach an abstract idea or concept with a social context (e.g. how to make a new friend or be a good sport), while sensory stories focus on a specific occupation and include strategies the child might use to cope with the way their body over-responds to its environment (e.g. coping with noise at a birthday party). In the end, the way you use them is about the same. First you develop the story specific to your issue and then read it to or with your child each day just like you might a bed time story.

The first step is to identify the problem. For my son, walking in the rain is a struggle because he doesn’t like the feel of drops or wetness on his skin, a symptom of tactile defensiveness.

Problem: Child complains and tantrums when rain touches his skin.

Next I write the ideal story about how my son sees and feels this problem and how he copes with it appropriately. The story is written from his perspective and sounds like positive self-talk.

Here is the combined social and sensory story for my child’s issue:

I am Not Bothered by Rain

When I go outside when it’s raining, my skin and clothes might get wet. The raindrops might fall on my face or head, or on my hands or legs. I don’t like this feeling, but it doesn’t hurt. I don’t get upset. I stay calm.

When I am ready to go outside, I look out the window. If it is raining or looks like it might, I put on my rain coat. If I’m not sure, I ask a grown up.

My rain coat protects my skin from the rain. I put up my hood. My hood keeps the rain off my head and face, mostly.

When it’s raining, I bring my umbrella. I like my umbrella. It helps to keep me dry.

When I go outside when it’s raining, even with my rain coat and umbrella, my skin and clothes might get wet. I don’t like this feeling, but it doesn’t hurt. I don’t get upset. I stay calm.

If my skin gets wet, it will air dry soon. Or I can dry it with a paper towel when I get to where I am going.

If my clothes get wet, I don’t cry. I stay calm and when I get to where I am going, I change them because I have extra clothes in my back pack.

Rain is annoying but it does not hurt me. I use my rain coat and umbrella to keep me dry. When I get wet, I don’t cry or whine. I wait patiently until I get to where I am going, and then I dry myself or change my clothes by myself.

~

You’ll notice that the story above has an introduction, a central portion that describes how he feels and how he responds, and a conclusion that restates the appropriate behaviors. I also include photographs of my child doing the appropriate behavior to make it more convincing and so that they can see that they are indeed capable of the desired behavior.

There are workshops and books available from the authors noted below, and many typical sensory stories may be purchased here, but so far I’ve learned to make my own custom stories that are very specific to each of my children’s issues.

My son keeps a book of these stories in his desk at school to read during free reading times or when he is feeling upset. We also leave a copy on the table at home for daily use.

These stories have been very effective for my children, so much so that the public school special education teacher asked me to make them for other children in the school with social behavioral and sensory issues.

Give this a try for your family and post here what has and has not worked for you.

1 Marr, Deborah and Victoria Nackley. 2010. Using Social Stories and Sensory Stories in Autism Intervention. OT Practice.

2Gray, Carol. 2010. The New Social Story Book. Arlington, TX: Future Horizons.

Lorraine Wilde is a freelance journalist and environmental scientist. She posts regularly on her blog and has published articles at the parenting website www.Neighborhood-Kids.com. Lorraine is writing her memoir, Egg Mama: An Egg Donor and Her Extraordinary Family.