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“Dear, It’s About The Children…”

Did you ever see the Mary Poppins movie from the 60’s?  I was four years old when my Nana Bevington took me to see it.  I loved the singing and dancing, but I couldn’t understand why the adults acted the way they did, especially when the children left.

The mother was busy working on “Votes for Women!”.  The father had a strict social protocol, with his own packed agenda.  It was hard to get their attention to report the children were missing.  The mother finally heard and nervously interrupted the gadding about.  “Dear, it’s about the children…”

Telling family members and friends about your child being diagnosed with autism can be just as difficult to master, minus the song and dance.  I first heard about my eldest son having autism on the phone with a school psychologist.  Thankfully, I’m told they no longer disclose over a casual chat.

Don’t do what I did.  I hung up the phone, leaned on the sink, and stared out my kitchen window into the back yard while I ate an entire bag of candy.  Then, I picked up the phone again and started frantically punching in numbers.  I called everybody and anybody.  Those closest denied it from the get-go:

“Absolutely not!  (knowing chuckle)  Well, she is wrong.

“Did you see her hands at the last meeting?  How can someone who has no fingernails from biting be a reliable expert on anything?”

“There’s nothing wrong with that child that a little discipline can’t cure.”

“Just get happy in the Lord and stop worrying.”

This was not helpful.  The candy made me sicker to my stomach than I already was.  I was worried and frightened that those who were figuring out how to help my son were tragically flawed (being so freaked in those meetings, I never noticed an absence of nails).  I was embarrassed knowing others thought my child was a brat.  I was ashamed that some implied we were bad parents.  I was shocked to wonder if a lack of faith had landed us in this pickle.

Being technologically Amish, I set off for the public library to research autism.  I found a couple of medical dictionaries, a book by someone with autism, and less than a handful of memoirs written from a parent’s perspective.  Although so many more families are now finding themselves in this same pickle, at least we have more information.  There are quite a few autism book “pushers”.  The amount of information with varying opinions is enough to make one’s head spin a la The Exorcist.

Here’s what I did with the information.  I still stick by this:  I’m looking for my children in everything I read and hear.  There were only two books I can recall leaving me with an impression of hope and information I could use.  Since then, I’ve been fortunate to read many books that have been helpful.  Now I want to re-read those first two books to see what they ‘feel’ like today:

The Siege by Clara Claiborne Park

Thinking in Pictures by Temple Grandin

No one can tell us more about our children than our children.  However, these two authors handed me a flashlight for what was then a very dark tunnel.  Would you hand me your Mary Poppins?  Tell me what you read that made the biggest difference, especially in the beginning.  No cross talk.  This is personal.  There is someone out there who needs a spark to light their way.

I sure wish I had you in my carpet bag when it was time for me to say, “About the children…”

12 Responses

  1. Prior to receiving Ben’s diagnosis I knew something was wrong. I looked up “autism” on the internet, and that led me to the bookstore. But my immediate need for help did not tolerate my historic lack of patience with my slow reading skills and tendency to go off on tangents so I began emailing everyone of any authority from ASNC to TEACCH (non-amish methods) and was amazed at the responses. Each person responding to my plea for help was extremely generous and offered excellent advice. One of these strangers spent 45 minutes of her time talking me off the ledge.

    I have never been able to read a book front to back, I thumb through the pages as if I am searching for a phone number reading where ever my finger stops for a second or two. But phone conversations, face to face meetings, and internet access started me on my way. Since then of course I read everything I can get my hands on.

    Maybe since I’m a guy that’s culturally more of a guy thing, or at least a impatient, keys jingling in the pocket kind of a guy thing.

    Loved the examples of support in denial by your “closest” it’s the friends and family members that mean well but word of advice to those closest to me, do not deny my concerns, I am well past wondering about the seriousness of the diagnosis. I know the facts, and the facts are that it is indeed about the children, my child in particular.

  2. Oasis book on Aspergers. In this book I found my son. I had been telling doctors that he was diffrent since he was 2 days old( showed severe sensory issues from day 1). I had worked with kids for 10 years before this. Drs just said I was a worried Mom. Then in Kindergarten when the school was trying to label him ED the OT said no he has aspergers. I knew they where wrong but maybe the OT was right. I went to the Book store and found the Oasis book and just opened it not expecting to see my son in it but there he was. We stopped the IEP started homeschooling moved to a different school district and restated the IEP . The school psychologist took one look at his testing and said our son had classsic Aspergers testing. Then we went to a Neurologist and he said the same thing. Now that our son is a teenager no one would question he had Aspergers.

    I wish the Drs had taken me seriously so our son could of gotten more social dev therapy before he was 5. But I am so glad I found Oasis book it was the help I need at the time. Thank You Oasis.

  3. I hope one day to endearingly call you a book pusher! My friend Kristina always talks about “Making Peace with Autism”.
    I am excited to read the comments here. I do feel like there is so much information the parents in our Early Intervention Groups are asked to process…it puts them in sensory overload.

  4. I started off reading THE HIGHLY SENSITIVE CHILD. This was very good and I saw much of my son in it! That led me to getting him evaluated by an OT, who diagnosed SPD and said he had significant issues in every area of Sensory processing. She told me plainly, “This is Aspergers. You need to get him evaluated.”
    I must say the best book hands down on Aspergers I have read is the OASIS Guide to Aspergers Syndrome. This was where I learned about Functional Echolalia, which accounts for 80-90% of my son’s speech. The book was so thorough I learned more about it than i can imagine, and I strongly considered stealing it from the library I had checked it out of! (I did finally return it, sadly!)
    For myself, I loved PRETENDING TO BE NORMAL. This is the book that opened my eyes to realize I am an ASPIE myself!

  5. Although we knew something wasn’t quite right with our daughter, her quiet nature and accommodating attitude to things made the early years easy. Of course her pediatrician telling us all 2 and 1/2 year olds act this way and nothing was wrong helped us walk through life with blinders on. But when Peri started to “clear her desk” with one sweep of her arm in school and she crept into this far off land with her dazed look on a daily basis, we knew then we needed help.

    A magazine article given to us by one of Peri’s EC teachers opened our eyes. It was as if the writer had secretly interviewed our daughter and wrote this piece. It was informative without scaring us and provided hope that someone understood our daughter’s behavior. It calmed our fears. Thank you Caroline!

    Parenting Across the Spectrum (by M. Morrell and A. Palmer) was the next book which had a huge impact on me. Finally another parent who understood all aspects of our lives and gave us permission to do the things which were best for our family, not anyone elses. The relief from guilt I felt after reading this book was what I needed to say the heck with everyone else, I’m doing what is best for Peri and her sisters.

    Thank you Alison for your wonderful blog. You provide such strength to me with a daily belly laugh.

  6. My son, now age 15, was not properly diagnosed with Asperger’s Syndrome until he was age 9. Upon moving to NC in 2001, I described him to a new friend who replied, “I think he has autism.” Having only the “classic” picture of autism in my head- I told her that couldn’t be the case. Especially because I’d had him tested at age 4 1/2 by a developmental psychologist, evaluated by a child neurologist and treated by a pediatric OT. NONE of whom even mentioned the word “autism” to me. By the time he was 6, I’d read, “The Out of Sync Child” (SO much of Sam in there) and “Indigo Children,” both which were helpful, but again, did not provide the full picture.
    The most helpful things I read early after his AU diagnosis were mentioned above including Temple Grandin’s “Thinking in Pictures “(A- I have it if you need to borrow) and an article called “The Geek Syndrome : Autism – and its milder cousin Asperger’s syndrome – is surging among the children of Silicon Valley. Are math-and-tech genes to blame? By Steve Silberman

    More recently I have read parts of Oasis and an article that I shared with his elementary school teachers called, “Raising Joey;” I just crossed out the name Joey (coincidentally that is my other son’s name -ha!) and inserted “Sam.”
    Sam and i read: “Asperger’s Syndrome, the Universe and Everything,” by then, 10 year old Kenneth Hall, when Sam was 10, just to assure him he was not alone. Though not the best book- he did relate to some of the concepts Kenneth included and helped us both feel better about the future.

  7. l. Catherine Faherty’s “Autism: What Does It Mean to Me” to help my son understand himself — and working alongside my son w/this workbook gave me a window into his world
    2. “Nobody Nowhere” by Donna Williams — enlightening, depressing and yet, somehow, hopeful
    3. “Thinking in Pictures” by Temple Grandin –wonderfully insightful
    These were my first attempts at understanding the diagnosis and my son’s perspective. Since then I have found many other wonderful books. However, going to conferences to listen to adults on the spectrum share their perspectives and advice has been the most helpful to me. As for getting “those closest” to do this — good luck!

  8. Even though my son did not have an dx of autism he did have a learning diablility which was being labled as “behavioral issue” – well of course anyone would act out being shoved into a square box. I remember channeling our Mom’s spirit ( the lioness) and making the Pinellas county Education department test my child. I wasn’t going to leave that office without
    that being scheduled. Is is indeed about the children and our support system better get with the program soon.

  9. My son’s journey to diagnosis was the loneliest, most mentally and physically exhausting year of my life. Who can you talk to about your fears?

    1. Friends with typically developing kids? No, they just don’t understand and you fear your child may be isolated if they know. Plus, who wants to hear or see everything their child is doing that your child is not? You keep your distance because it just causes bouts of crying and you may not be able to hold it together in front of them.

    2. Family? No, you want them to love him for who he is and not be “looking” for the signs whenever they see him. Besides, would your parents really understand when they decided years ago to hide your sister’s dyslexia from her (thereby not seeking help for her) for fear of the label?

    3. Your spouse? Well, yes, he is supportive but what does he really know? We’re in the same boat. We go back and forth all of the time. Also, he has a different perspective and cannot truly understand my fears or emotional lows.

    4. Other autism mommies? No, their children are completely different from mine. They do not look like my child AT ALL. They already have a diagnosis…how could they understand?

    5. Books (not to mention mainstream media)? NO! Cannot read ANY books about autism. Every time you start, you end up crying for days on end.

    6. That leaves therapists and “professionals”. The therapists who see your child in your home once a week all say they can’t really see it. “An autistic child would respond this way, but your child does this…” Surely they know — they work with autistic children all of the time, plus they see him in his natural environment. The professionals who diagnose for a living indicate he most likely has it. But they see him for brief amounts of time outside of our home. How can they really know him? He is quiet and tentative, but so are his parents. These differences of opinion create extreme emotional highs and lows, taking a huge emotional toll. Who do you listen to? You want desperately to believe the therapists, but what if…? Are you denying your child some early treatment that could make the difference? Who can you talk to to tell you who is right?

    What helped the loneliness was reading a fellow autism mommy’s blog, http://everybodysboy.com/. Being able to look at it privately gave me the courage to actually READ it. I realized that, although we have different experiences with our children, we have eerily similar emotional experiences. If I could write as eloquently as she does that could have been me writing about the hopes, fears, anxiety, depression, disappointments, loss and overall suckiness that we have experienced. I cried a lot while reading her posts. Finally, someone understands! I am not all alone. Maybe there are even more people who are going through the same thing. (Getting to know her and share our experiences helped even more.)

    That gave me the courage to reach out to someone at TEACCH who is also an autism mom (and a saint). She patiently listened through my tears and kept me from drowning during my darkest moments.

    Shortly after diagnosis I was able to start reading books. I went to the bookstore on several occasions and started looking at books by Temple Grandin. It was somewhat comforting to read her experiences, however her life didn’t look much like my child’s. Also, I just couldn’t wrap my brain around her thought process. How does one think like this? Does my child actually think like this? How will I ever understand him or be able to help him?

    Then I came across a book she wrote with Sean Barron, “Unwritten Rules of Social Relationships.” I could not conceptualize Temple Grandin’s perspective. However, Sean Barron’s account of his life hit me like a ton of bricks. His feelings and experiences growing up??? That was ME! While I didn’t have the rigid routines, I had the same beliefs and feelings. WOW!

    This book helped me come to terms with my son’s diagnosis (pretty much overnight). I have no idea whether or not I have autism (or would have been diagnosed as a child if the tools had been around then). But I certainly share traits with Sean and with my son. And if I understand Sean, maybe I will be able to understand him. It also gave me hope that maybe my son WILL be okay. (Although I now have to figure out if I really DID turn out okay…) 🙂

    This has been a lot longer than I expected. I have to go to bed! If you have read this far, thanks for listening. I guess I needed to talk.

    Also, thanks for your blog, Alison. Keep writing! As someone who is relatively new to all of this, your thoughts and experiences help me stand taller.

  10. First, I see someone mentioned my blog (and I am pretty sure I know who she is and she is awesomely strong in her own right).

    Thing is, reading wasn’t all that helpful to me. I would read and question myself, the therapists, psychologists. When my son’s language took off I felt like I was a fake, I felt guilty because so many of the other beautiful children I knew weren’t having such success. I felt like maybe the whole thing was a charade and that we really were trying to just excuse bad behavior. Maybe all the extended family and friends with “normal” kids were right – we just needed to “pray about it” and stop making excuses because he was fine.

    He is fine, they are right about that. But he also has Autism. I have my days where I can’t reconcile it still…but I know, it’s there – and if I ever doubt I ask one of my wonderful friends or therapists to just remind me. Sad, but true.

    I found my catharticism in writing. I was able to share so much anonymously on my blog (well not anonymous anymore…but in the beginning) and people responded. I have made some wonderful friends, and been inspired by sharing and reading the writings of other parents (I love your blog). I just can’t sit down and find that in a book. But maybe if you write one I will. 🙂

  11. Great information, Thank you so much… keep up the great work.

  12. I usually don’t normally post on many Blogs, however I just has to say thank you… keep up the amazing work. Ok regrettably its time to get to school.

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