From the mailbox . . . a letter and poem from a dad
I get quite a few letters from Aspergians and moms. Letters from dads are somewhat less common. I was touched by this note I received from Ray, the father of an Aspergian teen in South Carolina.
I have reproduced it here with his permission.
* * *
Thank you for your wonderful book. “Look Me in the Eye” has really opened my eyes to the thought process and the world of Asperger’s. My 14 year-old son was diagnosed with Asperger’s about five years ago. I’m sure you would have no trouble seeing the Aspergian traits in my son, James. I never noticed the way he walked until I read your book, but he does have the “typical” gait of an Aspergian.
By the way, thanks for the term “Aspergian”, it sounds so much better than “Aspie”. Aspie brings to mind a breed of dog or a award of some kind. Aspergian shows respect and dignity to all touched by Asperger’s.
I must be honest with you, Mr. Robison, I have had a hard time accepting my son’s Asperger’s as a blessing or light that shines in him. We have had many frustrating times with James, he has struggled mightily in middle school and now High School with teacher’s and administrators who do not understand fully what a day with James entails and how to keep him on track and keep him from being disruptive in class. We must have had hundreds of notes, e-mails and call from schools since James entered Kindergarten using the word disruptive.
I wrote a free poem (of sorts) about my son, I had thought I would pass it along to you as small thank you for your book.
My Son
2nd child full of brash and fire
Walking early, reading and writing at 4 years of age
Smart as a whip, maybe too smart
Obsessions come and go
Cars, Looney Toons, Nascar and Police chases
There has been no envelope not pushed, no button not pressed
Love conquers all, but frustration, irritation come close
Social graces not understood, politeness and manners are foreign at times
Friends are few and far between, "Quirky" kids are not easy to befriend
Inappropriate behavior commonplace, reason for behavior never explained or maybe not known.
Charming boy, loving boy (but not always)
Obsession becomes depression in an instant, self-esteem flies away.
Hatred of face, hair, braces and life in general changes by the day
Fear of him doing harm to himself is ever present
Any question asked of my son is received with rolling eyes and groans of dismay
A simple yes or no answer is never heard
School is a daily nightmare
Work not done, assignments missed and extra credit opportunities never attempted
Life Skills class they call it, self-contained class (in my time it was Special Ed)
Mainstream classes are scheduled to get a real diploma, so far not a great success
4 years may turn in to 5 or 6
every school day is a struggle
Normal is not in our vocabulary, your normal is not ours
Asperger's Syndrome, a mild variety of Autism
My son lives it everyday, and so does the entire family
We endure because of our love for him
We have no choice
A child full of challenge and potential hopefully realized.
My Son, I love him
* * *
I can certainly see myself in his poem. I imagine a few of you can see yourselves, too. It's nice to see we have dads like Ray out there.
You should know that I read all mail personally, and I do my best to respond. I also read all the comments you write in to the blog, and I value them all. I've received a lot of knowledge, insight, and guidance from those of you who take the time to write in.
I have reproduced it here with his permission.
* * *
Thank you for your wonderful book. “Look Me in the Eye” has really opened my eyes to the thought process and the world of Asperger’s. My 14 year-old son was diagnosed with Asperger’s about five years ago. I’m sure you would have no trouble seeing the Aspergian traits in my son, James. I never noticed the way he walked until I read your book, but he does have the “typical” gait of an Aspergian.
By the way, thanks for the term “Aspergian”, it sounds so much better than “Aspie”. Aspie brings to mind a breed of dog or a award of some kind. Aspergian shows respect and dignity to all touched by Asperger’s.
I must be honest with you, Mr. Robison, I have had a hard time accepting my son’s Asperger’s as a blessing or light that shines in him. We have had many frustrating times with James, he has struggled mightily in middle school and now High School with teacher’s and administrators who do not understand fully what a day with James entails and how to keep him on track and keep him from being disruptive in class. We must have had hundreds of notes, e-mails and call from schools since James entered Kindergarten using the word disruptive.
I wrote a free poem (of sorts) about my son, I had thought I would pass it along to you as small thank you for your book.
My Son
2nd child full of brash and fire
Walking early, reading and writing at 4 years of age
Smart as a whip, maybe too smart
Obsessions come and go
Cars, Looney Toons, Nascar and Police chases
There has been no envelope not pushed, no button not pressed
Love conquers all, but frustration, irritation come close
Social graces not understood, politeness and manners are foreign at times
Friends are few and far between, "Quirky" kids are not easy to befriend
Inappropriate behavior commonplace, reason for behavior never explained or maybe not known.
Charming boy, loving boy (but not always)
Obsession becomes depression in an instant, self-esteem flies away.
Hatred of face, hair, braces and life in general changes by the day
Fear of him doing harm to himself is ever present
Any question asked of my son is received with rolling eyes and groans of dismay
A simple yes or no answer is never heard
School is a daily nightmare
Work not done, assignments missed and extra credit opportunities never attempted
Life Skills class they call it, self-contained class (in my time it was Special Ed)
Mainstream classes are scheduled to get a real diploma, so far not a great success
4 years may turn in to 5 or 6
every school day is a struggle
Normal is not in our vocabulary, your normal is not ours
Asperger's Syndrome, a mild variety of Autism
My son lives it everyday, and so does the entire family
We endure because of our love for him
We have no choice
A child full of challenge and potential hopefully realized.
My Son, I love him
* * *
I can certainly see myself in his poem. I imagine a few of you can see yourselves, too. It's nice to see we have dads like Ray out there.
You should know that I read all mail personally, and I do my best to respond. I also read all the comments you write in to the blog, and I value them all. I've received a lot of knowledge, insight, and guidance from those of you who take the time to write in.
Comments
Thank you for the book! My husband and I loved it! Actually, my husband loves it so much he is almost finished reading it for the second time. :)
Ray
Sometimes people grow from adversity and simply because of the hardships. One can only speculate what might have been if John had grown up in a nurturing and loving home. (He might not ever have felt compelled to write a book.) It is a testament to his inner spirit that he has overcome such great odds against him. Adversity builds character.
Your book is all wrapped up under my tree. I can't wait to open it on Christmas morning.
I've read a big part of your blog... I'd like to contact you via email, is it possible?
I wish I could buy your book soon (since I am italian, I've never heard of it, but I hope it will arrive soon in my country).
My address is the following:
francesca.bocca@yahoo.co.uk
Write soon,
thanks in advance,
FB
As someone who suffered through many of the same things, "mild" would not be a word I would use to describe my frustrations, depressions, rage, and general discontent.
AS may be "mild" to NTs who compare its manifestations with other forms of autism or other conditions, but Aspergians can learn to hide their torment from the outside world. Trust me. I did.
On another note, I have posted my remarks from the Elms College gig that John and Kim and I and others did. Check out
http://www.mfw.us/elms-prepared-remarks
I used "mild" because that how it has always been explained to my wife and I. "Oh, it's just a mild version of autism, James will be "almost" totally functional in society."
I agree what James and our family have gone through with his Asperger's has not been mild in the least. And James is not "almost" totally functional in High School either.
We just try to do our best for James's well-being and try make him realize that like John R. he can accomplish anything he desires in his life.
Any of you can write me personally at john@johnrobison.com
There is an Aspie at the market I have a stall at....focused, always "on message", but with a heart of gold.
John...just keep talking. In a world drowning in voices...yours is one worth listening to.
To Ray: You really captured the fears and hopes of parents who have children with Asperger's Syndrome or autism in your poem. With your contribution you have brought a lot of balance to the autism blogosphere--not just with the positive/negative aspects of caring for someone with ASD, but also by adding more weight on the male side of the parenting world. As someone who has been part of a parent support group for four years, I noticed that dads are most likely to attend events that are more hands on. Dad are more likely to attend field trips or family game night than emotional support meetings. Thank you for sharing your poem and the emotions behind it.
Anyway...like Ray I never noticec my son's Aspergian ( love that term ) gait until I read your book..My precious boy is almost 8 , and right now is obsessed with Saints and the fact that God was Mary's ex husband. He is such a joy..and I hope that others feel the same way about him as well.
Thank you John and all you who comment here. You all give me much to think about and make me so thankful for my sweet Aspergian Treasure!!
Sometimes God gives "special" people "special" children. It is wonderful to hear you refer to your son as a treasure. Your son is blessed to have you...
That means that the outliers of the other 33% on both tails of the curve are either not served, or ill-served. Thus, your son is not the problem. The fact is, he is in a school which is a size 5 whereas he wears size 8 shoes!
When my son began reading at 2, programming computers at 3, then using word processers and keyboarding to type his stories at age 5, I expected the school to embrace this difficult, but brilliant bundle of genius. Instead they said that he was an "autistic savant" and tried to warehouse him in a learning support classroom with kids who did not know how to read. He was reading at an 8th grade level!! All the school did was teach him to behave inappropriately, kill his self-confidence and curiosity and cause me a lot of grief.
I homeschooled him in second grade but sent him to private school for gifted kids (at school expense, since they wanted to get rid of both of us. We were such a pain to them).
But even that school had faults. My son went to a wonderful afterschool program with a brilliant director who had a natural talent of translating autism and Asperger behaviors for the uninitiated, like myself. Unfortunately, my son's teacher was so clueless, that he could never get it. It was like a piece of this teacher's brain was missing. I guess the missing part was the "empathy" that normies are supposed to possess.
In 5th grade, his teacher was brilliant. In 6th grade, they were terrible. He went from being a wonderful student to being a "problem." I was tired of having my son labelled according to the teachers' abilities, so I pulled him out.
He gets lonely sometimes, so we try to arrange for socialization. It's hard in this little town we live in. But he has taught himself things that I could not. I teach in high schools and he is so above the kids there in some subjects (that he is interested in) that I can't see him fitting in school anymore.
We tried a lot of "help programs" but most of them didn't work. But even though I need to give him some instruction on maths and sciences (he doesn't like those subjects), as well as essay-type writing, he is pretty accomplished in other areas. School would just put limits on him. He was tested in 8th grade on achievement tests and hit the ceilings on the scores.
Bottom line is that your son is not defective, it's the school. I'd find alternatives, including cyber or homeschooling and get him out of that size 5 shoe!
Many people warned me not to "label" her, but the simple truth is that only NOW will the stubborn school staff sit up and listen, get help for her (and her teacher!) for the start of the new school year in February, and stop treating her like a naughty girl. OK, she CAN be a bit difficult to handle, but it was just startling to see how quickly her work and behaviour went downhill under the eye of a teacher who simply didn't understand Aspergers. It's kind of sad that teachers won't listen to parents' gut instinct recommendations and that it takes a diagnosis in writing to make something change.
It will be interesting to see how things improve with a new teacher next year and hopefully a special teacher's assistant to help guide my daughter to help her make friends (and keep them!) and to help her focus on her work. She is very bright and should feel good about it, but the negative comments seem to sink into her pliable mind more easily than the positive, so it's an uphill battle.
You, John, are a fine example of how unimportant an "official" diagnosis can be (or other bits of paper, like a diploma, for that matter!).