“From Heartache to Hope”
I’ve done a few book reviews before, but never on this blog.
(I was even signed up to be one of those Thomas Nelson book review bloggers, but the first book they sent for review was that one by Britney Spears mother. Yeah. I’m truly sorry, Thomas Nelson, but I honestly just couldn’t bring myself to do it. I’m a Southern girl and I was taught if you don’t have something nice to say… I think it’s still on the bottom of my nightstand.)
Anyway.
I do have a book that I am thrilled to be able to share with all of you!
“From Heartache to Hope– Middle Tennessee Families Living With Autism.”
In the interest of full disclosure, I will tell you right upfront that I am friends with the author and producer of the book, Leisa Hammett. I met Leisa online when I was blogging for the Tennessean and she was moderating the forums on their Moms Like Me website. We have met in real life several times since then, most recently at the Blissdom conference last week, and my affection and admiration for her is boundless. I have also met her teen daughter Grace, who was diagnosed at age three with moderately severe autism. Grace is a visual artist whose work can be seen at http://gracegoad.com/
Let me try to describe Leisa to you. She is, of course, a tireless advocate for her daughter and the autism community, lecturing, volunteering, and educating. She has appeared on countless seminar panels, workshops, and even ABC’s “The View.” She is articulate, focused, and driven. She is fiercely intelligent. She is tall and lovely with a head full of goldilocks curls. Her resume is equally impressive: “…a 30-year veteran of the corporate and nonprofit communications industry including public and employee relations, writing for regional and national magazines and newspapers, arts editor, former ASMT (Autism Society of Middle Tennessee) Parent Representative…” Are you getting the picture? This woman is a force of nature!
For “From Heartache to Hope,” Leisa teamed with highly-respected Nashville photographer Rebekah Pope, a specialist in baby, child and family portraiture. Together they have profiled a diverse collection of families in the middle Tennessee area whose lives have been directly affected by autism. From a single African-American mother raising three autistic children to the wealthy scion of the Frist family and his autistic son, Leisa’s spare, elegant words and Rebekah’s evocative black and white photos immediately draw you in. There is an unflinching quality to this book– no attempt is made to soften the heartbreaking reality and relentless struggle of living with autism. But unexpectedly, there is not only a thread of hope that runs through each story, there is a deep sense of connection and yes, joy in these families. They are part of a club that no one ever wanted to be in, but now that they are, there’s no way they are going to allow it to ruin their lives. These mothers and fathers and grandparents and siblings don’t just see a diagnosis, a label, a disorder; they see their loved ones.
Autism is described as a complex neural disorder that significantly alters the brain’s development of social and communication skills. It profoundly affects how a person perceives the world, and their ability to relate to other people. Autism includes a wide spectrum of behaviors– it can range from mildly impaired social interaction to severely disabled. It is baffling and complicated and can be devastating to everyone involved. That’s why the descriptions and pictures of the families in this book, all these different kinds of families, are so very heartwarming. In every single photograph, the person with autism is being physically touched and embraced by the other family members. They are surrounding, protecting and drawing their loved one into the family circle– constantly reaching out to the person who’s unable to really reach out to them. The images are strong. The words are beautiful. This is a poignant and powerful book.
On a personal note: Many of you readers know or know of Emily Sutherland, one of my favorite women in the world, who is a scriptwriter for Gaither Music and the benevolent overlord at Gaither.com. In 2008, her brilliantly quirky 11 year-old son was diagnosed with Asberger’s Syndrome, which is part of the spectrum of autism disorders. She and her incredible husband Scott rallied from the gut-punch of the diagnosis and embarked on a journey of learning and discovery. They researched and networked, striving to educate themselves so they could best serve their child. It was heartbreaking and inspiring to watch. Thanks to a complicated combination of medical, nutritional and psychological interventions, their son is doing well. But as Emily recently wrote me, “My wish is that everyone could be spared as late a diagnosis as we received.”
One of the many benefits of an art/documentary book like “From Heartache to Hope” is that it raises awareness of what autism is, and helps de-mystify and de-stigmatize by ‘putting a face’ on the people who are living with it. Leisa and her creative collaborators respectfully honor these ordinary families that will spend their lives wrestling with this extraordinary disorder by allowing them to simply and honestly tell their stories.
P.S. I would be very interested in hearing if any of you guys have friends or family whose lives have been touched by autism…
** “From Heartache to Hope” can be ordered here. The book costs $35, (plus $4 shipping costs), and the proceeds will benefit ASMT, the local autism support organization.
**All images courtesy of Rebekah Pope Photography/”From Heartache to Hope”
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Love this post! When I was in High School I helped in one of the special ed classrooms, teaching sign language to the students, a few of which had autism. The experiances I had with those wonderful souls were to numerous to be expanded on here, but suffice to say that they still touch my life today.Since then autism and those affected by it have been a keen intrest and passion of mine. If you ever have the opportunity to be involved with autism in anyway, take it, it’s an amazing world.
Laura– Thank you for commenting!
Have you read any of Temple Grandin’s books, or seen the new HBO film about her (with Claire Danes?) FASCINATING.
I gotta get this book.
I have worked professionally with the autistic in two different agencies. The first was a residential treatment facility working with very low-functioning teens and young adults. The second was with a program that treated 4-6 year olds, most of whom were newly diagnosed and ran more to the Asperger’s DSM diagnosis.
I was interested when Emily (the ‘benevolent overlord’ hee-hee) and Scott got their diagnosis because education,treatment and resources vary so much from state-to-state. I never asked too many questions,however, because I did not want to appear intrusive–which brings me to my main point of all this. Three things I believe with all my heart:
1. Autism is one of the most misunderstood disorders out there.
2. Autism is one of the hardest to talk about.
3. Early diagnosis is imperative.
I have had the hardest time when people I know–at church or families we play sports with–have a child who exhibits autistic symptoms and I KNOW in my heart that there is a problem. I never have been able to safely navigate that conversation and usually end up saying nothing,or asking someone who knows them better to suggest a referral to a specialist.I hope to come up with a better system.
I’ve read some of Leisa’s stuff. People like her and Emily are my heroes.
auburn– Wow, you do have a lot of experience in this area. My sister Liz is a preschool teacher and she has gone through exactly what you just described with a couple of her students over the years. It is SO difficult to know what to do or say, and I would imagine that the reactions could be all over the place. I do know that in one case the parents approached Liz and she was able to gently recommend some specific testing… And you are so right about early intervention. Crucial.
Interesting. I’m slightly autistic. I started connecting things around 10 years ago when working with one boy who was a “special needs” case. The teachers brought in an expert to observe him one morning, and basically she told the teachers to handle him in a similar way I had been. He seemed to respond best to it. Then at the next place there was one girl who exhibited symptoms normally found in boys who have a certain syndrome, and one boy who had other things going on. There were some papers about the syndrome part around to all of us working there and I started putting even more pieces together at that time. My mother had always known I didn’t come out normal, or like most babies, but no one would take her seriously, or if they did they were clueless as to the reasons why. I remember some people, experts, thinking it may have been diet related. I had to stay away from sweets for awhile, anything with red food coloring another time. Milk when I was a teenager. At about the time Christ started revealing a lot of things to me, around 7 years ago, my sister came across an article in one of my mom’s “better homes and life” magazines that she said nailed me to a tee when I was younger. She brought it to my mom stating, “This is jonny when he was a younger!! Read!” For the first time since I was born my mother finally got some answers she’d been seeking, and some confirmation as well. Around 2 years ago the penny dropped with my dad. He felt terrible and really sorry for what I had to deal with growing up. I’m still discovering how I’m different from others in many ways, and how I’ve taught myself to be more like others. Also what my strong and weak points are as a result of how I’m wired. Also, what’s because of the autism, and what’s because of other things I had to survive, experience growing up. OK, I guess I should read the post now! Oh, my 2nd aunt’s kid is worse than I was. His family won’t accept it, though. It has been brought up to his grandparents who’ve basically co-raised him.
jonny– Absolutely incredible, jonny. I can’t even imagine what it would be like to instinctively know that your brain was wired differently in some areas, and not have any affirmation or help or understanding. You are a strong man, my brotha!
Here’s an interesting footnote: Russ is really smart, very intuitive and quick. But ever since I’ve known him, he would always jokingly disparage himself where his intelligence is concerned. He didn’t like to read in front of people unless he read over the text a few times first. He was distractible–couldn’t focus on a conversation if the TV was on in the same room– and disorganized. I KNEW how bright he was, so I just chalked the other stuff up to being an artist, that whole creative temperament thing. Like you, he had a difficult childhood. A few years ago, he was diagnosed as being what they call a ‘trauma child’– one whose childhood contained enough negative things in it that it caused lifelong underlying issues, and virtually rewired his brain. He underwent a battery of tests during that time, and lo and behold: he was found to have ADD and a learning disability! He is not on any medications for that, he has spent his entire life unconsciously compensating for it, so they just gave him some more behavioral strategies to work with. But I saw such a sense of relief in him, just to have someone acknowledge and put a name to something he had intuitively known his whole life.
I would imagine you know how that feels, too.
Tori,
Thank you so much for sharing this powerful story! You are so right when you say that it is widespread and takes all kinds of forms. I work for the State of Oregon and up to a year ago I was the manager of a processing unit. I had the priviledge too work with the state and local agencies that assist folks with disabilities to get state jobs that fit for them. They also work with the employers in helping to facilitate the hiring and how to give the employee the best opportunity to succeed.
I was able to hire Annalise, who at the time was 21 and she was diagnosed very early in her life with Asberger’s Syndrome. Tori, Annalise has come so far to be able be in the position she is in today. Her counselors see how far she has come in her life time and are amazed at how hard she works in her life to be successful and she is truly an inspiration in the state system. Annalise is still in the unit I used to manage and she continues to blossom and grow, to astound and amaze. She is amazing and inspirational. She put so many other state workers to shame for their poor attitudes in life and their poor work ethics.
Thank you for sharing the book. Thank you for bringing this to our group.
God Bless and with Love,
-Mark and Wendy-
Tori,
Thank you for your review. I appreciate your sensitivity and observations.
Careful with our budget as the autism community has become a niche market and a number of the offerings are less than they promise to be yet I crave books and stories that encourage, but do so honestly.
I’d not trade this journey for anything as it has challenged me and I’m a better person for it. Joy and sorrow in tandem and kept by God’s grace. How does one balance the concern for a child’s future and the thoughts of ‘what if something happens to me —what happens to them’ apart from desperately clinging to God’s goodness.
‘For I know the plans that I have for you,’ declares the LORD, ‘plans for welfare and not for calamity to give you a future and a hope.
Jeremiah 29:11 NASB
…after near eighteen years, trust is a moment by moment deal. So what a blessing to have reminders that it’s a path shared by many. I look forward to making a space on my shelf for this one.
wendmark– I love this story! Asberger’s is such a puzzle. Emily Sutherland’s son is unbelievably bright, I mean SERIOUSLY smart. But he simply experiences the world differently than most people, and without a proper diagnosis and appropriate treatment the world would be a sad and alienating place for him. Thank God that’s not the case!
Tori…Thanks for this review. Before retiring from the school system several years ago I worked with special needs classes. For a couple of years I would work one on one (when needed) with a young autistic student. It was amazing…though his Reading & Speaking skills were affected…his Math & Art skills were Fantastic!! His pencil drawings would rival or surpass those I’ve seen in Art Museums.
I see him out with his parents from time to time. They are such a great support to him, I feel that makes all the difference in the world!!
stribet kat– First of all, WELCOME! And thank you for coming, and commenting.
Your words echo what I have heard other parents of autistic children say. I will admit that it is too tempting for those of us ‘not in that club’ to want to slap a happy face on it and speak brightly about all of the Abilities instead of the Disabilities– and there’s nothing wrong with that. But what you expressed, those simple words about the uncertainty of the future and all of the scary what-ifs… well, even without the challenges you face, those thoughts can keep ME awake at night! Those are truly the ‘rubber meets the road’ moments in our faith walk, aren’t they? I agree that “desperately clinging to God’s goodness” is the only way I know to live, too.
Silver– YES, that’s why the photos in this book were so moving to me! The support of the families was so present and palpable.
wendmark, from what I understand, that syndrome is quite hard to spot in really young girls. She was fortunate.
Tori, I guess that could also explain Russ’ obsesses need to collect massively expensive shoes from all over the world!! Sorry, couldn’t resist = ) = ) = )
Actually, if I understood something you shared earlier correctly, another thing Russ and I may have in common is we both don’t like listening to our own singing voices, even if other people do. A lot. Interesting.
jonny- HA! The only shoes he collects are running shoes– or in his case, walking shoes! They’re big, white and ugly and he wears them way too much so they wear out on a regular basis. I, on the other hand, own ONE pair of athletic shoes that I have had for about 5 years. Yes, they are comfortable, but they are so butt-tastically ugly I never wear them!
I can do some Vans, like the slip-ons, but that’s about it as far as “athletic” shoes go = / I think Mick Jagger was the first to wear those all white athletic shoes on stage back in the early eighties. Unfortunately, it’s STILL being done by some live musicians/performers today. Of his many sins, I think God may have the hardest time forgiving ole Mick that one!! Sorry, I digress = / What’re we supposed to be talking about again… ; )
Tori,I haven’t but I will have to look them up. I have always said childhood scars run deep, which rings so true and deep for me in a way that I can’t really explain, but I’m sure if you said it to Russ or anyone else who had a difficult childhood they would get it.
Jonny I can’t even imagine..I was ten years old before I was dignosied (sp?) With Cerebal Palsy, and that was hard enough.
Jer. 29:11 has long been one of my favorities.
I feel slightly ill-equipped to comment as I have had no ‘close’ personal involvement with those with autism (although this could change). I have nothing but admiration for these courageous families and have been inspired by what Emily has shared of their journey on her blog.
My best friend recently told me that her 6 year old son has been referred for assessment as the headteacher of his school thinks he may have aspergers. For her this has been a great relief because she has, for a long time, been trying to tell people that the social difficulties he has have their root in something more than him just being a ‘wilful, boistrous boy’. Since she told me I have done a little bit of ‘googling’ to try to understand more, and hope I will be able to be supportive. There is a little boy in Hannah’s class who has aspergers too and I have been disappointed by the lack of understanding/compassion shown by some of the other parents. I do not pretend to understand, but I hope by not pretending I might be able to encourage.
I know autism is complex and varies so greatly. When I was growing up there was a severely autistic boy in the church we were at. He could not communicate at all and could sometimes be disruptive but was very much loved by the church family. I was only young, and I’m sure Mum could tell you more. As a teenager I also volunteered as a helper with Special Olympics. I worked alongside people with a number of learning disabilities including autism. I like the description of them being ‘wired-differently’. My memories are of wonderful people whose brains just didn’t make the same connections as mine. God bless their families as they help them understand the world, and I pray that us in the world will go out of our way to understand them too.
rachel–
This is absolutely one of the best quotes I have heard in years, and I plan to use it a lot:
“I do not pretend to understand, but I hope by not pretending I might be able to encourage.”
Beautifully said!
Hello, All! First: Thank you, Tori, for your BEAUTIFUL review of our book! We’ve gotten a LOT of printed press coverage but it was great to read a review on the blogosphere and from another mom. Somehow it was different.
Next: thank you all of Tori’s readers, here, who have commented. Wow. I have some comments back. I hope I keep it all straight!
Auburn60: Do I know you? And, who’s the Emily (or her blog) you and Tori refer to? If you don’t mind….Anyways, from 13 years on the journey I say this–Dare. Risk. I have seen teachers and friends and family keep mum. This is an unintentional disservice. Years can go by with people fearing speaking up, yet often knowing. Meanwhile, as others have testified here, it can be a relief to know that someone else SEES what a parent most of the time KNOWS is not right….That was our experience. I’d really rather lose a friend than keep mum. You may do a favor. And, if you are wrong or they are offended, you know your heart is in the right place. It was a mothers-day-out director who first saw and FINALLY acknowledged what I had seen as differences since birth. (This is sorta rare for a parent to report.) By 18 months, I was begging someone to tell me they saw things were not right. The MDO dir. also blew me off when I interviewed for the school and told her my child was different. But within the 1ST hour of school, she called me into her office and knew to gently say she saw something that concerned her and “let’s just check it out, then we’ll know for sure”….She did not brazenly blurt out the “A” word to me as a physician assistant had said out of the blue to me a few months earlier, resulting in my becoming angry and defensive. There are gentle ways to say: “let’s just check this out and then know or rest assured.”
Jonny, both adults profiled in our book did not know they had autism until they were adults. It is not an uncommon journey for those with Asperger’s and other forms of high functioning autism.
Wendymark: The institutions have closed in most states, as you probably know. Just wanted to note that so others did not think this is a viable option for people. And, the story of the young woman is sad bc she had so much potential. But, Asperger’s is harder to diagnose in the young. And echoing Jonny, disAbilities in general are more ignored and under diagnosed in girls. Dena Gassner, adult woman & mother profiled in our book, takes this on big time in her professional work.
RachelBaker: I don’t know you but I like you and you are the kind of parent who makes the world a better place. What I perceive of you is that you are coming from a place of Love in your heart and not a place of Fear. You are teaching children by example. Compassion means so much to us parents living this journey. And, I had a comment, too, about the “relief,” but I said it already in my reply to Auburn60, above.
Bye, ya’ll! Thank you for your interest in our book! I hope you love it as much as we do!
PS: The show is also on exhibit at the Vanderbilt Kennedy Center. Details on my blog here: http://leisahammett.typepad.com/the_journey_with_grace/2010/01/vanderbilt-kennedy-center-exhibit-opens.html
Oh my word! This is some kind of deja vu! Friday night we were with my nephew on his 18th birthday! He was born to my brother and his wife—–the youngest child in a family of three sons. He is severely autisic. When he was a baby, he would sit in his playpen all the time, except when he was sleeping. He didn’t want to leave it. For nothing. And he would only wanted certain shaped toys. He would not look at you. Did not want to be hugged or touched in any way. He wouldn’t talk to you or even his parents. He was alone in his own little world, and no matter how much you loved him and wanted desperately to interact with him, he wouldn’t. This was a heart breaker. He insisted on things being in a certain order and would throw a tantrum if things weren’t! He ate only two things—–french fries and corn. Nothing else! Ever! When Mom or I made a big family feast, we’d make sure there was plain corn and McDonald’s french fries.
But he was diagnosed early and my brother and his wife took him to a WONDERFUL psychiatrist for treatment. When he was school age, he was able to attend regular public school——and thrive! He gets excellent grades. When he was in middle school, they had “Grandparents Day” and his mother told my mom about it. Mom went. And she had the best time! Mom was worried when he started school that the other kids would make fun of him and not understand his autism. She said the kids in my nephew’s class absolutely loved him! She said they protected him and cared for him like it was the most natural thing in the world. And they enjoyed him! He was funny—–when he gets interested in a subject, like insects or something, he throws himself into it so intently until he knows EVERYTHING about it! The other kids were amazed at his knowledge about certain subjects. He is definitely socially handicapped. He still finds it hard to look people in the eye or talk directly to them. But Friday night as I actually was able to hug him and wished him a happy birthday, he didn’t look at me, but I could see a little smile almost appear for a nano second. And I thought what a struggle a small thing like that was to him, and how outstanding are my brother and his wife at parenting this child! I know it was probably the hardest thing they’ve ever done, but they did it! I’m proud of them.
I’ve often thought about how they must worry about what will happen to their son when they are gone. Not just anyone can manage him. He likes things to be a certain way, and his routine unchanged. But his brothers let me know right off the bat that THEY will take their brother if something should happen. He belongs to THEM and they know what he needs!! I believe that having a special needs child in a family produces EXCELLENT character in their siblings….. most of the time, anyway.
Jonny, I feel so badly that you had to struggle through your youth with something that you didn’t even have a name for, much less have the compassion and caring of those around you. People are amazing at adapting, aren’t they? You clearly adapted very well, although not without silent suffering, and you even managed a successful career as a rock star/promoter! Good for you! I’m proud to know you! Even if I am a “former”! LOL
And Tori, Russ’ stories of his childhood make me want to cry. It’s just so dang sad! And unnecessary. And I know it’s silly to try to put a “happy face” on the whole thing by saying it must have been God’s will and all, (poppycock!), but I do think his suffering had a part in his “emotional vocals” that album cover writers love to talk about! There is a tangible “heart’s cry” in many of his songs that appeals to people—–people like ME.
Excellent blog entry, Tori! Applause! Applause! And Leisa, you are BEAUTIFUL, inside and out! It’s clear Grace got her good looks from you!
I forgot to give credit to my nephew’s teacher for his acceptance into that class. All his teacher’s, really! He’s graduating from high school this year—–not a special school or anything like that, but regular public high school with some extraordinary teachers and kids!
I’m afraid I don’t write as well as my daughter, well written Rachel! However I will try and fill you in about Michael. When he first started attending our church he was about 10 and he had no verbal communication. His mother had been told that he did not understand what was going on around him but that was not true and she tried to explain this to people. He loves the singing and often carried on in his own way long after others had finished. If it went on too long his mother would take him into the back hall where they could still hear until he quietened down. When we left that church he was 17 and well over six foot tall. The amazing thing about Michael was his hug. He always wanted to be hugged. I think he knew it was his main way of communicating. Sometimes even in the middle of the sermon he would go to the front of the church just to give Stuart a hug. That was all he wanted and after the hug would go back to his seat quietly. If he was noisy sometimes this was the only way to quieten him. We all loved Michael and most people took him in their stride although as he grew so tall one or two felt a bit threatened by the hugs. We returned to that church about a year after leaving and were immediately met by Michael with a big hug and I think a quick smile. How could people say he didn’t understand I know he remembered us and was pleased to see us.
In this church we have an 11 year old with aspergers. This boy is very intelligent and no problem at all. In fact makes an appointment to see Stuart sometimes to get his questions answered and boy what questions they can be. He keeps us on our toes and is a real joy to be with.
I am still hoping to get this boy’s mother on this site to add her own side but we’ll see.
Thanks for reading. Love being on this site with you all.
Leisa– Thank you for stopping by! I hope you come back by and keep reading responses– I really do have the best commenters in the bloggy world.
LindaB– I didn’t know about your nephew. What an incredible lesson about the power of parents, friends, teachers and extended family to completely alter the course of a person’s life! It’s really all about acceptance, isn’t it? Allowing people to be different from ‘the norm’, and working within the confines of their abilities instead of allowing their disabilities to overshadow everything. Good lesson for all of us.
bettywoodward– Michael (and everyone else in your congregations over the years) are so lucky to have had you and Stuart! I love the image of Michael giving Stuart hugs in the middle of his sermon– I can just see your gentle, dignified husband hugging him back and just continuing on… (And you wrote that beautifully!)
NOTE TO EVERYBODY: I am watching the HBO movie on Temple Grandin right this minute, and it is brilliantly done. I highly recommend it if you get cable, or rent it, or something– unbelievable. AND, here is a link to Leisa Hammett’s blog again, this time all about her thoughts about her brief meeting with Temple– it has some other links in it that will take you to an NPR radio interview with Temple as well. http://leisahammett.typepad.com/the_journey_with_grace/2010/02/ode-to-the-temple.html
I’d like to add one more thing about my nephew—–he is a MASTER of the Rock Band Guitar game!!!! No one can beat him! His name is on the wall at the video arcade for being the best!! He is very proud of that! It goes along with what you said, Tori, about finding out what the autistic child does well and praising him instead of concentrating on the things they can’t do. They are just like us in that we all want to be able to point to something we can do well to give us a sense of self worth.
You’re so right, Tori & LindaB. When I had the honor to interpret Sari Solden’s speech about ADD this was a very special experience: this time it was ME who was different because there were mainly ‘ADDs’. Of course I know that ADD is not the same as autism but just this short glance into what those people experience every day – being different – gives you a good deal more respect and sensitivity for those special persons. Each of them is indeed special !
Your blog is SO COOL, Tori! I love it!
Hi Leisa! No,we’ve never met–although I am a sucker for invitations to lunch whenever I’m in Nashville! I live in east TN and have for about 13 years. I followed Tori to Nashville Mom-to-Mom and read your input and have checked out Grace’s art work from time to time. She has really grown up!
Emily is Emily Sutherland,writer for Gaither Music and all around dynamo. (Hi,Emily!We’re going to talk about you as if you aren’t here,O.K?)She is a pint-sized bundle of energy,looks like a HS cheerleader,has the graciousness of a Southern Belle and the idea of her as a ‘benevolent overlord’ just cracked me up.
I have sometimes tried to go behind the scenes to find out what pediatricians/teachers/day care workers have told parents about their child’s behavior and how the parent responded and then based my decision to speak up on that info. It is a work in progress for me as I really fear being hurtful and have been at times without meaning to(ask Tori-I put my foot in my mouth on a regular basis.) I know several families locally in various stages of acceptance and intervention and continue to be aware of how resources vary from community to community.
Maybe we will meet face-to-face one day!
Obviously, this book and the blog comments have struck an important and personal chord. I’m moved by it all. We often think that everyone else is cruisin’ through life but you; then you find out we all have something that we struggle with and try to make sense of. Thank you to everyone’s input.
No problem, Mostly!! And… Happy Birthday, Still In Her Former Prime!! Woo-hoo!!! Hope it’s a good one = )
Thank you, Jonny!! I will be celebrating today in my usual fun-filled manner—–babysitting my two year old grandson! My 7 year old granddaughter is here today too! There’ll be lots of running, squealing, laughing, and chasing the dog around!
Mostly Sunny, you’ve nailed it! That’s life, isn’t it? Trying to make sense of our own lives, and showing compassion for others trying to make sense of their own. That’s why I love this blog so much—-because that’s the tone Tori takes here.
mostlysunny, LindaB, everyone else: That’s why I love this blog so much, too!
I am a writer by profession and by nature, which by definition means that I WILL write, no matter what. But blogging is really more of a conversation, and if I didn’t get the feedback from you guys, I would just be talking to myself, kinda standing here with my laptop shouting out the window at the world! I LOVE these conversations, and I value you all so much.
Happy birthday, LindaB !
Tori, you hit it quite nicely when you talked about ‘great depth and surprising shallowness’ in your last post; this is a time of depth and it is absolutely touching/interesting/thoughtful…and I dare say this is why the wacky times can be appreciated even more than without the seriousness in between. You, your blog and this community are so precious to me !
HEY LINDA B!!!!!!!
*singing Happy Birthday To You at the top of my quavery, off-key voice*
HAPPY BIRTHDAY LindaB!
Tori, I’m glad I wrote something that you liked. Your words have inspired/impressed me on so many occasions its nice to return the favour!
Leisa, I hope your perception of me is right, it is certainly the type of parent I hope to be.
Thanks for letting me be part of the conversation.
HAPPY BIRTHDAY LINDAB!!!! I’m going to eat a handful of chocolate covered almonds in your honor… Have a great day! I’m singing harmony with Tori…..lalalalalala….
Thanks again everyone for the birthday wishes and singing!!! I feel so…….special…….and old! But alive! I’m grateful to God for every year and every day He gives me!
Came on here to swipe a link and Tweet Tori’s fabulous post and saw ya’ll are still talking. Wow. And I started reading. But, given that I have serious butt fatigue from being at the computer for several hours at this point with some more to be logged while my HEART is screaming, “Hurry up and GET OFF!” just wanted to say, hi again. I’ll get back! Liked what I read. Thank you again for sharing. And you’re right Tori, these are impressive blog talkers! Enviable.
Leisa, I spent some time looking at Grace’s artwork today. It is stunning! I love it!!! What a talent she has! Does she paint everyday? Is she proud of it? I hope so!
I’ve only been around a couple autistic people in my life——one being my nephew. I LIVE everyday with bipolar, ADHD, and manic depression in my daughter and granddaughter, but haven’t had much experience with other autistics. But I’ve noticed something about my nephew and I wondered if you, being an advocate for autistic folks, have noticed it too. My nephew seems to me to be so totally unable to be false, or misleading, or lying, or deceptive. He’s unflinchingly honest, which presents some social problems at times, but I find it refreshing and endearing. Have you noticed that? I’m just curious…..maybe you could answer that if you come back and your butt’s recovered.
OK, now I’M in a singing mood!! OK, LindaB, you wanted to hear me sing, well, here’s “Happy Birthday” in FINNISH!!
“Paljon onnea vaan,
paljon onnea vaan,
paljon onnea precious Linda,
paljon onnea vaan!”
Hyvää syntymäpäivää!! = )
OH WOW!!!! THAT IS FANTASTIC!!! I love it!!! Never had anyone sing anything in Finnish to me before! Thanks, Jonny!
Hey, while you’re in a singing mood, sing something on the computer thingy so we can hear ya!!! We’re waiting!
LindaB, yep my 11 year old son is brutally honest which can be refeshing and embarrassing at times!
Betty spoke about my 11 year old son in her earlier comment, Connor was diagnosed at age 7 with Autistic Spectrum disorder and ADHD he takes medication for his ADHD mon-fri to help with his concentration at school.It was a battle to get Connor diagnosed and even harder to get the help in school he needed. Aged 5 his reception teacher mentioned the word Autism to me she was concerned that Connor seemed in a world of his own and instead of playing with the other children at breaktime he would pace up and down the playground. I went to see my GP who took one look at Connor spoke to him and told me that as he made eye contact with her he was not autistic, not convinced by this I pressed her for a referral to a pediatrician. I got the referral and the Doctor said there was some kind of learning difficulty, but wanted a report from speech therapist and occupational therapist before she made a final diagnosis.The waiting list to see the occupational therapst was 18 months! Connor’s speech therapist specialised in working with children on the Autistic Spectrum after 10 minutes with Connor she asked me if i new anything about Aspergers Syndrome as connor displayed many of the traits associated with it! I left the meeting with a contact for a voluntary group called SNAP, this group provided advice and support for parents like me, on there advice I got my family and friends to make notes of any behaviour that seemed unusual, armed with this I made another appointment with the padiatrician finally after 2 years Connor got his diagnosis!
Those two years were very hard I felt shocked, frustrated, angry, sad, afraid of what the future held for Connor, no one seemed to be able to help or give answers. Connor’s behaviour at school became almost unmanageble Autistic Children are bright but Connor was trapped unable to voice his feelings, ideas and thoughts he could not read or write and his only outlet was to shout scream, throw things even hurt himself.
Then finally aged 9 Connor got the extra support in school a teaching assistant to work alongside him a speacialist teacher to show his teachers how to engage him and teach him. Now aged 11 he can read and write and is accademicly at the same stage as his peers, he loves maths and computers although still struggles to see the point of writing answers down when you can just tell people!
I thank God for blessing me with Connor and I know when he says “Mum I love You” boy do I know he means it! Stuart, Betty’s husband has given Connor the chance to explore his faith and he has the upmost respect for Stuart,how amazing is God that he has placed Stuart and Betty in the lives of two Autistic boys whose lives they have touched.I have so much more I could say but I have gone on for long enough. God Bless x
“I went to see my GP who took one look at Connor spoke to him and told me that as he made eye contact with her he was not autistic”
LOL!!! Sorry, but that has to be one of the most ignorant things I’ve heard/read in awhile!! = )
Thanks for stopping by and sharing, heffa!! Could have been longer, though, no worries!! = )
heffa– THANK YOU so much for coming by and sharing your story– please don’t be a stranger. It seems in case after case it is left up to the parents to be the ones pushing, pushing, pushing to get a diagnosis and to get help. Thank God YOU are Connor’s mother– like Leisa and Emily, you are his best advocate.
Oh Heffa! What a heartwrenching story, but ultimately victorious! Two years of worrying and guessing and waiting for someone to help you and give you answers about Connor! You must have been frantic! I’m so glad it turned out well and Connor is thriving and doing well! It’s amazing what a good doctor and therapist can do, along with a supportive and encouraging circle of family, friends, and teachers! I’ve often tried to imagine how I would feel in some of these autistic children’s place, and I think I’d feel so totally alone and hopeless! And SCARED! When you can’t make sense of the world around you, or fit into it, what do you do or where do you go?
I think these kids are brave beyond measure! Bless them all!
(You can’t talk too much on this blog, Friend! I’ve tried it many times and they haven’t kicked me off yet!! Come back often and talk to us!)
Oh, lordy?! Has the party ended? I’m finally back. And for the record, here are my responses. Thank you all for your kind comments about our book and my daughter’s art.
LindaB: The next several paragraphs are replies to you.
Regarding siblings–Yes, there’s research being done about the POSITIVE impact (not just the less than positive) of being a special needs sibling. Vanderbilt is one university researching this and there are books out now about sibling relationships. Research has shown they are more mature, responsible and lean toward caregiving professions.
Children with autism often tend to gravitate toward repetitive type electronic games, per your one mentioned observation.
And, they do thrive on praise. One of the best pieces of advice I got was from a terrific psychologist who noted that bc of their challenges, feedback could be very negative routinely. So, to emphasize what they do right. This is a basic that Vanderbilt and other TEACCH method (Univ. of NC) recommend–praise!
Grace right now is painting daily in high school. Usually it’s been once a week with a one-on-one teacher. After we were on The View’s autism episode in 2007, it seemed to dawn on her that she had a gift. Thank you (and others) for visiting her site. I’m sorry it’s still under reconstruction!)
And, yes, honesty is a trait. They are not clouded with the garbage that the rest of us are. I have a post publishing at midnight tonight (publication date Wed. Feb. 24, http://www.LeisaHammett.com, addressing this issue. I believe it is a Gift that people with these differences bring to our world.
DelightedAbroad: FYI, ADD is a component in autism. It’s also on the disAbility continuum. Hope that makes sense & isn’t too jargon-y.
Auburn60: there is an East Tennessee Chapter of the Autism Society of America that can provide support & info to teachers and parents.
Heffa: thank you for sharing your experiences. Unfortunately, long waits have been historically common, though yours was extra long–but not unheard of. For the record, GP’s & pediatricians are not qualified to diagnose autism. That would be the domain of psychologists and psychiatrists. Historically, pediatricians have kept numerous families from getting earlier intervention bc of their lack of qualifications and cautiousness about labeling.
Thank you all for your eager, enthusiastic discussion. I was not prepared (though “shoulda” been, given I’ve seen the load of comments here many times before). So, sorry I’m late in returning. At least others coming in later will have these replies from me.
Hey, ya’ll! (Now that you’ve all left…) Just realized I needed to come share that we are having a book signing at Cool Springs Borders 1-2, Sat. April 24. Ya’ll are welcome. (I do realize some of you are across the ocean & other places besides Tennessee. Would love to meet any of you who are able to come.) Also, we have a facebook page for our book: From Heartache to Hope. You are welcome to join as well. Thank you!
Leisa thank you for your comment x
i thought it would be good for Connor to comment on how he finds living with Autism the good and the bad so what follows is from Connor aged 11.
My name is Connor.James.Robinsons and I am Autistic I am raised by my mum (Heather. Harcot), my step dad (paul. Harcot) and my other brothers and sisters, I only get to see my dad (James. Robinson) once every two weeks.
Being Autistic has made completely different any one I know somtimes in good ways somtimes in bad ways like emotional problems and not liking to be around others but it makes me unique so that can make me proud for being Autistic.
I may be Autistic but have had a normal happy life with some good friends, good sporting abilty everything that you could want.See it does’nt matter if you’re Autistic or not it won’t stop you from acomplishing what you want to do because it’s just you doing what you want to acheive and don’t think that you can’t do anything just because your autistic.
Leisa, thanks for returning and answering some of our questions! I really hated to see this post end! I think autism is a fascinating subject! It seems to me that the autistic child has some incredible knowledge locked inside their minds that could benefit all of us. We just have to provide the patience, the acceptance, the tools to unlock it, and the love that is needed to open up their awesome minds.
I watched the movie “Temple Grandin” last week——-4 times! I am fascinated with her story! I Googled her name and found interviews and things she’s written, and even a YouTube video of her talking about her autism! She thinks Einstein was autistic, and Bill Gates too! What would our world be without the work of these two giant “thinkers”? Your daughter’s art is another example of the gifts these kids have tucked away in their minds! God bless you in your work for these kids! If I lived anywhere near Tennessee, I’d sure like to come to your book signing and meet you and your artist daughter too!
Thanks again for answering our questions!
Thanks so much for sharing Connor!! I truly appreciated what you wrote, and it’s so true!! Thanks for taking the time to share all that with us!! Love you much, and trust you will continue to challenge and bless many in accordance with Our Lord’s good purposes! = )
Peace, and again, much love!!
jonny
Dear Conner! I am so thrilled to have this message from you! And I’m happy that you have accomplished so much, even with your autism! I know it’s been a struggle for you, but you certainly can be proud of how far you’ve come in life! I love the fact that you are into sports! That’s cool!! What sports do you like best?
I admire your spirit and tenacity! I know you’ve had lots of help from Mum and Dad, but it’s been mostly your hard work that brought you to the point of having “a normal happy life with some good friends, good sporting abilty everything that you could want.” I hope you’re VERY PROUD of who you are and how God made you and what you’ve accomplished! I know He is proud of you, as we are!
Thanks for sending us this message! It was very cool! We loved hearing from you! Write to us again sometime……okay?
Thanks for writing Connor. It was really good to read what you think.
CONNOR!
I just now found out that you visited my blog! Thank you so much, I am honored that you chose to comment here. I love what you wrote, and it makes perfect sense to me. My friend Emily has a son that is autistic and he is AMAZING– actually, he sounds a lot like you! His name is Jackson, and he just turned 13 this week. He is smart and funny, he plays hockey and takes guitar lessons– just like you said, he has differences, but he also has a ‘normal happy life’ with lots of good things in it.
The reason we are all so happy that you wrote to us here is because the only way we can really understand something like autism is if we can hear from someone who really knows what he’s talking about, and tell us how it feels. I truly appreciate the fact that you did that, and even though you can’t see me? Even though I am waaaaaaaay across the ocean over here in the U.S., right now I am smiling and waving and blowing you a kiss!
Love, Tori the Babybloomr
Wow, am I EVER late to the party!! I’m the Emily with the Jackson and it is so wild to hear from so many different perspectives what an adventure this whole journey is! Jackson’s diagnosis is very much on the ‘high functioning’ end of the spectrum, but I think the thing that is most misunderstood for him is that just because he understands “A” then he “should” (by those with limited understanding of the spectrum) be able to understand or do “B”. For instance, he can write something that most 30-year-olds can’t… but he might find it difficult to stop pacing around the kitchen so he can start writing it! This is VERY difficult for teachers to understand. They think because he can carry on an truly intriguing conversation that he might know that his constant ‘tapping’ on the desk is driving the entire class batty.
The good news in our case is that many of his symptoms can be treated biomedically and his prognosis is great. The tough thing is… knowing how much to let him enjoy the wonderland that IS his brain and how much to intervene and help him conquer some of the things that come with this whole deal because I NEVER want him (or any of you amazing Aspergers/ASD folks who have entered this conversation) to feel that you aren’t amazing enough already.
The giftedness that comes with Autism Spectrum Disorders is truly that – a gift. And nothing can discount that. Educating the world is key in helping those affected thrive in the giftedness in spite of the challenges. THAT is the hardest part… but that is the goal in front of us. And that is a great thing to bring to a book like the one that started this entire discussion!
Thanks to each of you for your incredible comments and for your encouragement to me in our story (which is still unfolding). And blessings to you, Leisa for creating a book that looks at Autism in such a classy way.
Social comments and analytics for this post…
This post was mentioned on Twitter by Babybloomr: Wanna tell you about an incredible book by a friend of mine… http://babybloomr.com/2010/02/12/from-heartache-to-hope/…
(See?! I told you Emily was incredible! )
Yep–Emily’s awesome.
I am so pleased to have come back to this post…amazing people here!
How I needed just a smidge of encouragement in the early years. It’s why I champion blogs and twitter. Such incredible resources in real time to help ‘detox’ from the events of the day
I would have loved to have come here and reveled in the community that is Tori’s blog. Like the day I held my tongue when a dear sister in the Lord purchased a parenting book and been thoughtful enough to take a lime highlighter to —so I wouldn’t miss the points that she thought I needed to tend to. There have been so many hurts by thoughtless people over the years. I have developed thicker skin but never cease to be amazed at some folks’ chutzpah.
In our son’s early years when meltdowns drew crowds I finally made little Autism 101 booklets and would hand them to the person who felt the need to “intervene” while I did my best to remain calm and assist my son who was in pain that was misunderstood for “being a brat”. Some folks were miffed but the understanding that I gained from the Wal-Mart security folks and the staff at our public library forged long term friendships and some of the most reliable support.
My biggest challenge has been to remain an advocate and not adversary. To be as gentle with those who don’t ‘get’ my son as I would want them to be in understanding him.
…I went long. I’m still frightfully new to all this bloggy and social media stuff. Learning how to breathe again
Stribet Kat– Honey, there is no such thing as ‘going long’ on this blog! And I am so glad that you are part of this community.
The idea of you making your own Autism 101 booklets to hand out when your son’s meltdowns were misunderstood and judged by others just… undoes me. It is brave and brilliant and heartbreaking. And this is one of the best things I’ve read in a long time:
“My biggest challenge has been to remain an advocate and not adversary. To be as gentle with those who don’t ‘get’ my son as I would want them to be in understanding him.”
You and rachelbaker are very quotable!
Stribel Kat, I loved what you had to say! I just logged in so I could tell you how much I loved your “Autism 101″ booklets! Then I see that Tori beat me to it! That was brilliant! I wish I could have given my brother that idea when family members and friends thought my nephew’s tantrums over his toys being out of their usual sequence—–smallest to biggest, or some well meaning person trying to get him to eat anything other than corn or french fries——was just spoiled brat behavior! My family had never heard of Autism ever! But family love made a way to understand and enjoy this wonderful child.
Oh, and welcome Emily! It’s so nice to see you here——and enjoy your writing as we always do!
I loved what you said about making sure the autistic child knows that he is amazing enough already—–even without the special gifts and abilities, and the vigorous therapy needed to make them function more like the rest of us. Your son is a very very lucky boy to have you and Scott as parents. God bless you all!
Could I just live here 24-7? Ya’ll are NICE.
Had a phone call from Heather (Heffa) last night saying that Connor was just so excited to read all your replies that she didn’t think they would get an early night!
Emily, glad you joined in. I follow you on twitter and am glad you join in on here as well.
It is good to hear from round the world and not just UK how things are managed with autism.
“You and rachelbaker are very quotable!”
Don’t worry LB, you are enjoyably quotable at times too = )
emilysutherland…
“Could I just live here 24-7?”
Why not, I do… = /
bettyrwoodward…
“Had a phone call from Heather (Heffa) last night saying that Connor was just so excited to read all your replies that she didn’t think they would get an early night!”
Well, kinda her own fualt, I’d say. She should’ve known what would happen when she let Connor come out and play with us. You did warn her, didn’t you Betty??
emily again…
“…but I think the thing that is most misunderstood for him is that just because he understands “A” then he “should” (by those with limited understanding of the spectrum) be able to understand or do “B”.”
That is sooooooooooooooo ‘takes a quick breath* ooooooooooooooooo, etc and so on, TRUE!!! BUT, we often understand “C” while working with, playing with the “A” of it, which can be even more challenging for some to understand because they weren’t aware there was a “C” in the first place = / I hope that made sense. Also, if your boy is only tapping his desk, and his desk alone, count your blessings. I used to run across the tops of all the desks in my way = / It may have also had to do with stuff I had to deal with at home as well, though.
Peace!!
Oh, and let the party continue!! This may be the first time we’ve abandoned the most current topic/post/thread and concentrated all our attention on an older one again!! Well done Connor!! Woo-hoo!! YEAAaaa…!!! (And off he goes, acting like Kermit the Frog all over again, but this time running all over the tops of everyone’s Say it!s) = )
Emily said, “Could I just live here 24-7? Ya’ll are NICE.”
Sure! Move right in! Be careful though, a certain Finnish rocker might just run right over your desk! LOL
As certain rocker LIVING in Finland!! Not a trace of Finnish blood in me!! Not that I’m aware of anyway = /
Oh, and hopefully Connor isn’t geting any ideas about what to do on other kids desks at scool now!! Hopefully mum is filtering some of this before it gets to him = / I should also probably be more careful what I share here…
jonny, please don’t worry what you post its most refreshing to be surounded by such honesty! Not had a chance to up date Connor yet but the vision of you running accross a school desk is more likely to make him laugh than inspire him to do the same lol!
On the topic of desk tapping noise like that have Connor climbing the walls, as does tongue clicking and the noise you get from a balloon when you rub it poor thing just can’t handle it!
Bettywoodward – you should have warned me this place is a riot, I love it
Sorry Tori for sending everyone back to an old topic, but its current every day for me and all of those who live with Autism xx
heffa: I NEVER mind revisiting topics– especially this one! We can keep this conversation going forever.
wOOT! Thank ya’ll. I’m flattered. Humbled. Amazed. This last go round has been particularly RICH. Wow. I want to go grab my autism parent buddies and say lookie here!
Connor, thanks so much for sharing your perspective!! You win the best comment award. I’m just sayin’.
EmilySutherland, I assume you are Connor’s mother? I love your comments. Great. Lovely. Real. Yes, see the Goodness. See the beauty. Yes, you are OKAY just the way you are. We live in a “neuro-typical world” that expects you (people with autism) to conform–which you will never completely, but lovingly, as your parents, teachers and friends we will can help guide you along the way…humblt knowing you will teach us much more than you will teach you….
LindaB: Yes. Temple is funny talking about all the people with Aspereger’s running NASA. Yes. Great minds! Loved that you watched it four times.
Ya’ll Temple will be here in Nashville speaking in April. She also speaks around the world frequently.
SkribetKat: Wow. Oouch. Sweet dear. Yes, you had it tough going bc now there are actually pre-printed cards to hand out. You were creative, inventive and ahead of your time. And Wal-mart & the library personnel understood bc they see it frequently in our children. I lead bi-monthly autism orientations here at the Autism Society of Middle Tennessee and I have a “Wal-mart” story I tell each time I speak in that format. Actually, it’s helping folks to cope with those Wal-mart moments so that they do not transfer other people’s “stuff” upon themselves bc who needs that on top of the challenge?
Thank you all. You’re amazing. And, it doesn’t miss me that you have an amazing blog-ess here blooming atop it all. She’s the reason you’ve come here and are so giving. She’s provided the facility.
Sweet Leisa…
Just for clarification: heffa is Connor’s mum, and my friend Emily from Indiana has a just-turned-13 year old son with Asperger’s named Jackson.
Thank YOU for writing such a wonderful book that has provoked such incredible responses!
Hello! Is the party over? Been meanin’ to get over hear and share the news we’ve got about four or so events coming up within one week to commemorate national Autism Awareness Month in April. Here’s a listing of details for any of the local-yocals. There’s also info on a simultaneous book as our last signing, a fabulous movie–“The Horse Boy.” It will be premiering 50 US cities and also on PBS, including ours. Details — http://leisahammett.typepad.com/the_journey_with_grace/2010/04/april-is-autism-awareness-month-3-h2h-book-events.html
Quick facts: Sat. April 17 12-2 Green Hills Whole Body. Me. Book. Lonesome. Make eye contact with me. PLEASE. Better. Say hi. Smile. Buy book. Love me. Someone?