Below is an exclusive inside peak of Carly’s Voice, only available here on MyAutismTeam. Special thanks to MyAutismTeam Guest Blogger  & author of Carly’s Voice, Arthur Fleischmann.

Sometimes small worries are the biggest. Of course parents of kids with challenges worry about their future; their happiness; their loneliness and isolation. But because our daughter only seemed to have an on and off switch, no calm in-between, I worried most about night times and what fresh hell might be unleashed during those gauzy hours between midnight and dawn.

Here is an excerpt, “Sleepness” from the book, Carly’s Voice, I wrote with my daughter Carly.

Sleeplessness

Even now, with the worst of it behind us, I have a sense of foreboding at bedtime. Through most of her childhood, Carly’s constant movement and inability to settle tormented her sleep and ours. She would struggle to fall asleep at a reasonable hour and to stay asleep for more than four. All parents go through sleepless nights with their infants, but by forty I had hoped to be past this phase of my life.

One night, around eleven, when Carly was little, Tammy and I were in bed, as usual. Tammy can only fall asleep with the television on, so we’d watch Jon Stewart ridicule George Bush, or a news show on CNN—a group of guys I call the screamers because they yell over one another to the point of childishness. Tammy, however, is a news junkie and follows the commentators and the politicians that they rip apart like most guys follow sports. But to me they look like old gray men raging against the system, and I can’t understand how it relaxes her.

When I finally drifted off, I did so with one ear open as always, because I knew my night was just beginning. Sure enough, just after two in the morning Carly burst from her room and jolted me back into a hazy reality. She ran—Carly never walks, never moves peacefully—into the hall and bounded into our room. Each step was a heavy stomp, her hands slapping at her sides. But her fiery energy packed a mean punch. She didn’t cry so much as bleat, a sound that immediately raised my blood pressure. What few words she had been able to form at three or four years old were long gone, replaced only with gestures and guttural noises. Perhaps forming words was more effort than it was worth, since gesturing, grabbing, and whining often produced quicker results. We despaired of ever actually hearing Carly’s voice. The effort required for her to utter even the simple nouns she once learned far outweighed the benefit to her; it was quicker and easier to point to what she wanted or use the binders filled with picture symbols of things other people’s mouths could prattle off without thought. Or perhaps as she developed, pathways in her brain—the complex network of neurons that told her mouth what to say—crisscrossed into a tangled mess, leaving her speechless.

She stood in the darkened room at the foot of our bed, stripped naked, and jumped up and down. She made the yelling and howling sounds that were her only form of verbal communication. I pulled myself heavily from my bed. “I guess it’s my turn,” I said sarcastically to my wife. She had learned that if she stayed in bed long enough, I would be the first to get up. This tactic left me with a double dose of resentment. I am not kind when I’m tired and aggravated. The sense of humor I often use to defuse a situation deserts me and is replaced with petulance. “It’s always my turn,” I throw in under my breath. I shepherded Carly from our room and back to the sea of destruction that faced me in hers. Compelled by some unstoppable, inexplicable force, Carly had pulled the sheets, pillows, and blankets from her bed and emptied all the contents of her dresser onto the floor. She was now on her bare mattress jumping and flopping about as if possessed. “Oh, Carly,” I said. I felt the creep of desperation in my stomach. This was not a new scene for me; it was one that played out over and over—almost every night. Carly’s behavior was inexplicable, and without language, a mystery.

I put the sheets and quilt back on her bed and plumped up the pillows. It looked inviting to me, anyway. “Carly, get back in bed,” I told her, a bit roughly. Although she complied, I knew this was the beginning of the day, not the end of a momentary disruption of the night. She flopped around on the bed as I sat on the edge trying to soothe her. “Shhhh,” I said, or was it a command at this point? I lay next to her, hoping to project an infectious calm.

“Think of something peaceful,” I suggested. “The ocean, for example.  A walk on the beach.” For me, visualization has always been a powerful ally. It’s hard to know if Carly understood this technique. I tried not to talk down to her. An attempt at soothing her to sleep felt futile; hadn’t I tried every trick I knew a hundred times before?  

As the fit subsided, I viewed the carnage of clothing strewn around the room. “You must make her clean up all of her messes,” the therapists had told us. “It’s the only way to discourage her from doing it.” I think they called it an “aversive”—a kind word for “negative reinforcement.” In this case, cleaning up was designed to be a consequence of her action, to discourage her from making a mess next time. But making Carly do anything she doesn’t want to do is a major struggle. For whom is the task really an “aversive,” then?

“Piss off,” I said to no one in particular; it seemed like the right sentiment. I was woozy with exhaustion. Not just a physical tiredness, but the type that comes from tedium, frustration, and anger. I usually can move beyond anger with some sort of catharsis, like provoking an argument or slamming a door, but this seemed like an inextinguishable fury. the only force keeping me moving forward was inertia—what choice did I have?—and a desire for normalcy.

Though my life often felt like I was bailing water from a foundering vessel with a teacup, I believed that if I was determined enough, consistent enough, patient enough—I could bring order to chaos.

I lay next to Carly as she drifted off only to be startled back to wakefulness with a twitching spasm. so we lay this way as the rest of the household slept. We had purchased a clock radio that played a series of Zen-like nature sounds. I stared up at the ceiling, and listened to the track trying to determine when one cycle of chirping birds and bullfrogs ended and the next one began. It was like counting stars. Something mindless I could do at two-thirty in the morning when I should be sleeping. Carly was finally quiet, though not sleeping, so I headed back to my own bed.

On a good night, I might have fallen back to sleep and cobbled together something that resembled a sufficient amount of rest to function the next day. But this night was not a good night. I was jolted again by a crash in the kitchen. I ran downstairs to find Carly standing on a chair in front of a food cupboard. Boxes of crackers and pasta, cans of soup and stewed tomatoes lay around her on the floor.

“God damn it, Carly.” the rush of emotion electrified my body. “Stop it. Just fucking stop it. I’m exhausted. If you want to live in this house, you need to get control of yourself,” I snapped. I had slipped into the bleak place exhaustion and frustration sent me. But I didn’t feel better after making these hurtful threats; I felt worse and worried that one day the threats may not be empty. This was not a sustainable existence, every night and every day, chasing Carly around the house, putting our things back together just in time for her to rip them apart again.

Several months before, Carly had snuck upstairs and filled the bath. We were unaware of what she was up to until we heard the flood of water pouring through the ceiling lights on the floor above. Another time, she smeared peanut butter on the den walls and furniture. While we cleaned up after her attack on the den, she grabbed a full container of baby powder and dumped it over the second-floor railing onto the carpeted stairs below. By the time Carly was seven, her uncontrollable movements and urges had taken on an untamed, destructive quality. Carly’s actions were not mischief that we would laugh about when she was older, such as the time Taryn gave one side of her head a haircut. It was like living with a raccoon in the house, and there were no signs of her growing out of it.

At three in the morning, I was in no mood for cleaning up. I left the debris on the floor and took Carly back upstairs, put her on the toilet, and cleaned her up. Back in her room, I remade the bed for the third or fourth time that night and got her back under the covers. This time I knew I wouldn’t be going back to my own room. Not tonight. I lay down next to her again, pinning her in with the blankets and the weight of my arms and legs across her. She sometimes likes the sensation of swaddling, but by this point, I mostly did it to hold her in place. I knew I wouldn’t sleep, but at least I wouldn’t be moving. Carly arched her back, screaming and flailing; the tight hospital corners my mother had taught me to make gave way as Carly sprang from the bed again. She jumped around the room yelping.

I considered getting Tammy up to give me some relief. This would have been a double-edged sword. Tammy wears her frustration much closer to the surface than I do. if she started yelling at Carly, I would feel worse than if I just dealt with this myself. Mothers are supposed to have limitless patience, but I know too well that this isn’t true. Tammy was drained. Her daytimes were not so different from my nights. She spent thankless afternoons shadowing Carly and navigating the mostly unchartered waters of caring for a child severely afflicted with autism. Hers was a relentless struggle to seek assistance from government agencies—help for battle-scarred families like ours to cope with what no family should have to cope with alone.

Then there was the matter of Tammy’s health. After years of struggling with cancer and colitis, she felt like an old woman although she was only forty. When I looked at her, I’d see a sadness that was not there when we first married. She often complained of an overwhelming sense of hopelessness. “I don’t see a way out of this,” she would say. But every day she persevered in her attempts to fix our daughter. “There really is little choice,” I told friends who sympathetically inquired about our situation. “What else can we do?”

And so I tried to manage these nighttime battles on my own as best I could. If there was an alternative to this hell, I couldn’t find it. On nights like this I found myself reflecting on the desperate case of a young mother, Dr. Killinger-Jackson, who had lived nearby.

On a sticky morning during the summer of 2000, she awoke early, took her six-month-old baby, and jumped in front of a subway car as it entered the local station. I had driven by the house owned by Dr. Killinger-Jackson many times before the tragedy. The house was, and still remains, beautifully landscaped and pristine. At night, I used to like to peek in the window as I passed because the interior looked so elegant and peaceful. I liked to believe that the house’s appearance reflected the lives of the people inside. Her death, and that of her child, was a sad and shocking story made worse by the fact that the she was a psychiatrist and the daughter of a psychologist who counseled those with depression. it seems that even experts in desperation are not immune to it.

Many were horrified by the story, but my wife often spoke empathetically about Dr. Killinger-Johnson. Not too publicly, mostly to me, she would say, “I can imagine what she was feeling. If not for Taryn and Matthew . . .” Then, eerily, her voice would drift off, ending with “I could never leave them motherless.” she would take a deep breath and steel herself up for the next challenge. She clearly empathized with the dark hole inside the perfect-looking life of our neighbor. We, too, had a house and life that looked tidy on the outside, but was a hurricane on the inside.

When Tammy would speak this way, a wave of nausea would flood over me. Not because she sounded irrational; in fact, it was just the opposite. Week after week of sleeplessness and exhaustion left me with little argumentative response. Because of Tammy’s resolve, her tenacity, and her stalwart rescue missions for our daughter, I never considered her dark fantasy to be a legitimate risk. In reality, when things got too awful, Tammy would just get in her car and drive around until she calmed down. It didn’t matter what time of night it was. And I just tried to breathe through it, not exactly praying, but repeating to myself, “Just let me get through one more night.” We had become masters of surviving Carly. Eventually morning ended the seemingly endless night; one that had never really begun. Light crept through the shades. Carly’s room filled with the happy tweets of the birds that nested near the small portal window of her room. I sat on the edge of her bed. It was close to five-thirty, and she was finally calming down, though still far from placid. Her room looked like a tornado had hit it. But by afternoon, Mari would have done her magic; everything would be back in its place, creating a temporary sense of order. Carly’s room would once again be a pretty one with custom-made pink and white drapes and a coordinated coverlet; an antique armoire and dresser with little lamps, picture frames, and figurines resting in the corners. It should, I thought, have been a room filled with giggles and “Sleep tight, don’t let the bedbugs bite,” not chaos and turmoil.

I rested my head on my hands. My face felt numb and rubbery, the way your lip feels after a shot of Novocain. I looked at my sweet, tormented little girl, her thick wavy hair erupting from her head, the big green eyes with long eyelashes, and her broad cheekbones. “So beautiful,” I whispered out loud. Inside I longed for something more. A father can give and give, but he wants something back. Just a hug. Or a silly malapropism. “Oh, Daddy! look at the slobber!” Taryn had once said, referring to the neighbor’s inflatable lobster floating in their pool. A smile and a sweet memory would be fair payment for all this.

I looked at her again; Carly was finally sleeping. Her breathing was calm and regular, her forehead damp with perspiration. I lay down gently next to her so as not to wake her, still longing for some sense of connection. I could feel my anger dissipate. There was so much I wanted for her, simple things, impossible things. “Carly, I want you to be calm and happy,” I whispered. “I want you to speak. I want you to play and have friends and go to school. I want you to accomplish something you will feel proud of. I want you to sit at the dinner table and share in the conversation. I want you to have a first boyfriend whom I will regard with skepticism, and then a husband whom I’ll welcome with open arms. I want you to have a life. I want you to know peace. I want . . .” I cuddled her closer. She was still just a little girl, soft and warm. She smelled sweet, like bath gel and shampoo. I drifted off to sleep.

Worry and sleeplessness are a toxic cocktail; one that many parents of disabled children drink all too often. What can we do to be calm, patient parents and suffer the arrows of sleeplessness? Assign nightshifts to one parent or the other? Hire night staff (who can afford that?)?  To us, it was an answerless riddle that was only solved with time.

The above excerpt, “Sleeplessness” is from CARLY’S VOICE by Arthur Fleischmann with Carly Fleischmann. Copyright © 2012 by Arthur Fleischmann. Published by Touchstone Books, a division of Simon & Schuster. Reprinted by permission. All rights reserved. Order your copy today (digital and print available).

What better time than Autism Awareness month to take a moment to read through scores of fantastic books for parents of children with autism.  Here are five great ones – each coming at the topic from different perspectives.

1. The Thinking Person’s Guide to Autism -  What you really need to know about autism: from autistics, parents and professionals – Edited by Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham and Carol Greenberg.

• The Reference Guide for Parents: Written by veteran autism moms with practical, educated, dogma-free advice on topics ranging from what to do after diagnosis, to how to think about picky eaters, medications, sensory issues, therapies and schools.
• Shannon Des Roches Rosa and Jennifer Byde Myers are incredibly knowledgeable about nearly every topic associated with autism.  They provided us with expert guidance that was instrumental to the formation of MyAutismTeam and the constructive culture we work hard to promote.  Their book and their blog is a terrific resource for parents.
• “This is the book we wish we’d been given when autism first became part of our lives”, explain the authors.

2. Autism Understanding and Acceptance – Written by Stuart Duncan

• Educating Others in Your Life About Autism: Stuart Duncan is the father of two children.  His oldest son has autism and Stuart has made it his mission to help people truly understand and accept others impacted by autism.
• “What I would really like to do is reach parents that don’t yet have a child with autism,” explains Stuart.   To that end, he encourages readers to make copies of the e-book and share it with friends and family that may need a little more understanding of autism and how it affects others.

3. A Regular Guy: Growing Up With Autism – Written by Laura Shumaker

• Memoir of a Mom: This is a memoir written by a remarkable mother about raising her son Matthew and navigating the waters of autism from the toddler years through to adulthood.
• Laura explains Matthew’s desire to be a “regular guy” in a way that inspires empathy and true understanding.  As in her regular blog, she unselfishly shares her personal struggles and challenges as a mother and offers great advice on how to stay sane through all the ups and downs.
• Laura has been a great advisor to us at MyAutismTeam and through her personal experience she has become one of the experts on handling the transition to adulthood with autism.

4. Carly’s Voice: Breaking Through Autism – Written by Arthur Fleischmann Carly Fleischmann

• (Full disclosure: Simon & Schuster, publishers of Carly’s Voice, are promoting the book on MyAutismTeam, but that’s not why it’s on our list.)
• The Inner Life of a Non-Verbal Individual: This is the book that shows us that non-verbal individuals with autism can and do have active, rich intellects.
• Carly was diagnosed at aged 2 with severe autism and an oral condition that prevented her from speaking.  Doctors told her parents she’d never have the intellectual capabilities beyond that of a small child.   Then at age 10 Carly started typing and proved everyone wrong.
• Her father, Arthur Fleischmann says, “Don’t ever give up – even when you think you’re not making progress” and adds “Your child has an inner voice and likely understands far more than you think they do.”

5.  The Autism Revolution: Whole-Body Strategies for Making Life All It Can Be – Written by Martha Herbert, MD, PhD with Karen Weintraub

• New Approaches to Treatment: After years of treating patients with autism and analyzing data and outcomes from multiple scientific disciplines, Dr. Martha Herbert, a pediatric neurologist at Mass General Hospital asserts that autism is a condition impacting the whole body, not just the brain.  She rejects the notion that autism is a “genetically determined, lifelong brain impairment” and focuses on treating all the symptoms associated with autism.
• “This book offers a hopeful (though definitely not Pollyanna) view of autism and concrete steps parent can take to help their kids,”  explains co-author and Boston Globe science writer, Karen Weintraub.  By treating the physical side of autism, including sleep, digestive, and immune problems, the authors point out, “seemingly minor changes can make a major difference” in the lives of individuals with autism.

Many of the authors are part of the MyAutismTeam community.  They are incredibly approachable folks to boot!   Here are their usernames on MyAutismTeam.

ShannonRosa

JenniferBydeMyers

StuartDuncan

Arthur

Laura

Don’t be shy, post a comment on their wall if you have a question or want to leave them a comment.

- Eric

“After my son was diagnosed with autism, we felt alone.  We had no idea what to do, or who to turn to.  Our friends couldn’t really help us.  We felt isolated, like we were re-inventing the wheel.”

While this quote is from the mother of a six-year old boy diagnosed with autism three years ago, it could have come from any parent of a child with special needs.  Feelings of isolation often start with the diagnosis.  Family and friends on Facebook may want to help, but usually do not have the foggiest idea what it truly means to have a child with autism, ADHD, Down’s Syndrome, or any other special need.  What’s more, they may even offer unhelpful advice or judgments that further isolate an already stressed out parent.

Isolation forces don’t let up after diagnosis. They resurface as parents try to…

• Get their child into early intervention
• Negotiate an IEP with the school
• Fight for coverage with insurance companies
• Explain outbursts at school
• Explain absences from work while they tend to their child
• Educate other parents about autism
• Try to help their child make friends
• Help a child stand up to bullying
• Try to nurture a marriage
• Manage the transition to adulthood

It’s not unusual for parents confronting these challenges to feel like it’s “them against the world.” It’s one of the reasons mothers of children with autism have stress levels that rival that of combat soldiers.

So what’s a parent of a special needs child to do?  How can you fend off these isolating forces and maintain your mental and physical health through the years? Below is the advice of several parents of children with autism who have figured out ways to overcome – or at least keep at bay – those feelings of isolation.

Solutions

1. Reach out – Don’t Go It Alone

•  “You need to find the emotional support in your [special needs] community – online or locally,” explains Kristina Matthiesen, mother of a 6 year old boy with autism.  “When you have a child that isn’t acting in a socially normal way – it can be even harder to put yourself out there, but you need to reach out and connect with other parents who know what you are going through.” Kristina searched for other parents near her online on MyAutismTeam and through her local mothers’ club website.  AIMES, a mother in Camas, WA adds, “Join local support networks. It helps to know you’re not alone. Network through any social media you can to find the best programs and fit for your child.”

• Just the process of reading someone else’s story is comforting and therapeutic.  “Finding someone who is going through the same thing as my family (even if their situation is more or less severe) is so helpful.  [It helps] to know that I am not alone with what I face on a daily basis.”

2. Preserve Your Marriage or Relationship with an S.O.

• “Parenting a child with special needs can be draining and taxing on a relationship,” explains Sharon Esch of Albuquerque, NM. “Trying to remember that our marriage is important and showing appreciation and affection for each other had really been put on the backburner for a while.  I knew that we needed to work on “us” so that we were a better team.”   To do that Sharon and her husband started having weekly lunch dates while her son is at school (an ingenious way to avoid the costs and challenges of finding a sitter).  More important Sharon reports, “we get a chance to check in with each other and have adult conversations.”
• Autism parenting expert Laura Shumaker, author of A Regular Guy and mother of an adult with autism, worked hard (and still does) to keep her marriage strong.  See her blog How This Autism Mom Stays Married for more good ideas.

3. Do Something for Yourself – No Really, Do It

• Request respite care so you can do simple things for yourself.  If you don’t have family or friends who can provide that respite time, check with your local Easter Sealschapter as they may offer respite care for families in need.
  • Jennifer F, of McLean, VA advises parents to, “do whatever healthy thing they can to help them cope with the challenges their family faces… a new or old hobby maybe? Even if it’s not something you can get to every day, do SOMETHING for yourself.”  She found a hobby that directly reduces isolation.  She started a blog to help her cope and share with others.   “I included a ‘Stuff That Work For Us’ page to share what little things help us get through the day.

4. Communicate Regularly and In-Person with Teachers, Aides, and Other Parents

• James Vaughan, father of 6^th-grader Kian, and organizer of FAAST – a support group for families in Utah has had consistent success working with the teachers and special education providers in his school district.  Among the many helpful pieces of advice he shared in this interview last year, was to communicate frequently with teachers and aides “all year long – not just during the IEP process”.   “We regularly check in to make sure we are helping each other,” James explains.  “We let [my son’s teachers and aides] know things we are trying at home that are working, and notify them of any changes that could impact [his] performance in school that day.”  Sharon Esch adds that she is in contact with her son’s speech and occupational therapists on a weekly basis.

• LoriRoseYurtin, a San Jose, CA mother has been experiencing difficulties setting up play dates for her 10 year-old son.  She advises parents to  “keep the lines of communication open with the teacher and with other parents.”  Educating other parents helps them become more prepared for and receptive to play dates.  She adds, “I am very open about [my son’s] challenges and his issues with playdates.”

• EmeraldDriver of Caldwell, ID works hard to make sure teachers of her two children understand their specific needs.  “[When] I explain [their] little quirks and how to spot them or handle them, both children tend do better at school and with their peers.”

• Finally, several parents recommend getting an autism advocate (if you can afford one) to help you negotiate IEPs and the services the school should provide to meet that IEP.  It’s nice to have someone else on “your side of the table” during IEP negotiations.  This is particularly helpful in school districts less experienced with handling autism.

5. Help Prevent Your Child’s Isolation

• Some kids with autism don’t try, or have a hard time, making friends.  Frequently it’s up to the parent to find ways to their child active socially.  Sharon Esch shares, “I’m always looking for community activities that he can participate in and be a part of the community.”  Over the years her Autism Team has grown to include a day camp, gymnastics classes, and piano lessons among other activities that help her son interact with others.

• When you spot bullying at school take action by talking to the school and other parents immediately.  Enlist the help of the parents, teachers and students to look out for your child.  Many parents reiterate how critical it is to prevent bullying and encourage caring in the classroom by educating the entire classroom about autism at the beginning of the year.   Many parents have become adept at giving the 30-second explanation of why their child is behaving differently to another child.   Heather Ludeker offers this one: “He has autism. It means he thinks differently than you or me and doesn’t always know how to show it in the right way.”

• Social integration and occupational therapy can be very helpful for teaching a child with autism the basics of social skills.
• Finally, much has been written recently about scouting and autism.  Many parents have found success enrolling their child in cub scouts and boy scouts.  See the recent article, Scouting with Asperger’s: One Family’s Story by Amelia Ramstead in the latest Autism & Asperger’s Digest.

These are not the best or only ways to fight off isolation.  The key thing to know is that you’re not alone as a parent of a child with special needs and you should actively reach out to others.  Many other parents have been in your shoes and know how hard it is.   Connect with them and find out what they do to make their families thrive.

(This blog post, written by MyAutismTeam co-founder, Eric, was originally published on Special Education Advisor on March 20th.  SEA is a really useful site, particularly for all of you thinking about IEPs!   Thank you to the awesome parents on MyAutismTeam for sharing all this wisdom.  As usual, all the credit for the great ideas goes to them!)

In March, we reached a special milestone: over 20,000 U.S. parents have signed up for MyAutismTeam. This phenomenal growth is a testament to the vibrant and accepting community each of you, as parents with kids on the spectrum, has shaped on MyAutismTeam.

MyAutismTeam’s social network for parents of children with autism has taken off in the U.S., and is debuting in Canada today. Canadian parents are invited to join the site to start connecting with other parents.

Also, autism providers and specialists in Canada (private and public organizations) can list themselves within the MyAutismTeam directory for free. Because it is still relatively early, we do not have any listings of Canadian providers on the site. We’ll look to parents who join to add their own service providers, schools and doctors to their team. Our hope is to have over 3,000 autism providers listed on MyAutismTeam by the fall of 2012. We think we can do it with your help. When we lauched MyAutismTeam in the U.S., we started with 12,000 autism specialists & businesses provided by Autism Speaks. Today with the help of thousands of parents in the United States, we have 30,000 autism providers! So if you’ve found a barber who gets it, or an IBI therapist who works wonders with your child, add them to your team on MyAutismTeam.

Just how different are the challenges parents face in Canada compared to the U.S.? 

Stuart Duncan, autism father, blogger, and author of Autism Understanding and Acceptance, made this observation,

“…it seems a lot more complicated in the US simply due to the separation of the states. For example, one state may have the schools making the diagnosis where other states may have neurologists doing it and then others go to their pediatricians. Getting the diagnosis is only the first step. How can things be so different? And then there’s the insurance issues. Each state has to pass their own law, each insurance company

Stuart's family: sons Tyler & Cameron, and wife Natalie

has to set up their own rules and guidelines and loopholes. It’s a mess.

In Canada, you go to your pediatrician for a diagnosis and health insurance is pretty much a governmental thing. There’s not much variety in how you do things.

There are pros and cons though. In the US, either you pay or you’re covered; either way, you get the service. In Canada, if you pay, you get the service, if you’re covered, you wait. Depending on which service you’re trying to get, the wait times vary. For us, we had to wait 3 months to get speech therapy and had to wait over 3 years to get IBI [Intensive Behavioral Intervention, or IBI, is exactly the same as ABA except that the child participates in an intensive number of hours of therapy per week, usually more than twenty.]“

Other parents agree on the challenges in getting a diagnosis. Niv Jameson, mother of a 19-year-old teen, says this about the challenges she faces with waiting for a diagnosis:

“[U.S. parents] have more services available and earlier diagnosis. By the time my son was diagnosed, we had missed a huge window of opportunity for intervention.”

To avoid the common scenario of years-long waitlists, Marishel Santo Domingo, mom of a young child diagnosed with ASD took the private route:

“Our family chose to get a diagnosis done privately after over a year on a waitlist, at the cost of $2000+. After finally getting the diagnosis we were put on another waitlist to receive IBI therapy, which came about 18 months later. For the year and half we didn’t have funding, we had to pay out of pocket for therapy at the rate of $40 per hour, which was a huge financial strain on our family.

Something that is common among U.S. and Canadian parents: teams.

It takes a team to support the well-being of children on the spectrum no matter where you are. Canadian parents we spoke to had a range of support depending on how much the government insurance covered and affordability.

Stuart Duncan’s son’s team includes: “Cameron’s teacher and EA (educational assistant) at school, a therapist, and us.”

Niv Jameson’s team includes: “Naturopath, chiropractor, allergist, pediatrician, crainial sacral therapist, speech pathologist, art therapist, riding instructor, one on one student aides, and martial arts instructor.”

Amanda Holleuger’s team for her 23-month-old includes: “Kerry’s Place Autism Service, pediatrician, and dietician.”

Marishel Santo Domingo explains how she went about shaping up her team this way:

“Diagnosis was the hardest part for us. Being a first time mom at the time I didn’t know the signs, and it didn’t occur to me that my son had autism until he was 2-1/2. Our doctor was very ‘wait and see’ and didn’t properly help us find any resources. I had to do all the research — calling different agencies on my own in order to get him diagnosed. Then, I sent him to every doctor I could think of: a homeopath, naturopath, chiropractor, neurologist, osteopath, psychologist… all in search of some treatment, though nothing really worked. The only effective treatment was IBI therapy, which he didn’t start until he was almost four.  Most of these treatments we paid for out of pocket. To get him into a Special Kindergarten program we had to register him with our home school, and then request a meeting with the principal and the special needs consultant of the school district. Next, we entered into a review process in order to identify my son’s needs and where he would be best placed in the upcoming school year. He ended up in a Diagnostic Kindergarten program, which was a smaller class with support from Occupational and Speech therapists provided by the school. We were happy with this decision.”

Of course, as we’ve learned at MyAutismTeam, a team is made up of more than autism specialists, schools and providers. Teams are made up of parents, too, that provide emotional support in a safe, judgment-free environment. Executive Director of Autism Speaks Canada, Suzanne Lanthier, said

“Autism is a very isolating condition – from families living in large urban centres to those based in small rural settings. It is often very hard to connect with others regularly, or face to face. Many volunteer parent-run support groups are in place across Canada, but we’ve certainly seen the use of on-line chat groups, Facebook and Social Media where parents get a lot of support. When you see a parent having a particularly tough ‘autism day’, the support from parents around the world saying things like “we get it”, “I hear you”, “sending you hugs and understanding” – that goes a long way to having parents feel less alone, more united and empowered to keep on with the fight.”

Stuart Duncan was one of the first parents who asked MyAutismTeam to expand to Canada. And we’re glad he did. Families of an estimated 190,000 children diagnosed with ASD are in Canada. Regarding the types of support she looks for, Amanda Hollueger said, “I go to as many training programs as I can, and talk to other parents there as well as online on sites like [MyAutismTeam].

Parents of Canada, we can’t wait for you to join us on MyAutismTeam. We understand you. We get it. Lots of hugs and understanding are waiting to be shared. Find and connect with parents like you throughout North America, or those in your city or province, and even those who have kids similar to your own. We have an easy to use “Find Parents” feature that enables you to find parents geographically near you, or by matching the diagnosis and age-group of your child.

Hope to see you on MyAutismTeam, soon!

Keep the feedback coming! Every day we help each other make the site better for parents within the MyAutismTeam community from the U.S. to Canada.

 Written by Mary Ray, CMO/ Co-founder at MyAutismTeam