Tuesday, December 11, 2007

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.

26 comments:

Laura said...

Thank you for sharing the poem with your readers/lurkers. It certainly could have been written about my son, Henry. I have what I like to refer to as the "3:00 (or after-school) ulcer...brought on by the inevitable 3:00 phone call from a concerned teacher or principal to discuss my son's daily antics. Just last week, I had a psychiatrist tell me I must have been given Henry because I'm a patient person. I think Henry is my son to teach me patience.

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. :)

Kim Stagliano said...

I tend to be surrounded with more autism Moms than Dads, but boy, when the Dads speak out, it's always powerful. I suppose it's a father wishes and dreams for his son being altered by autism/Aspergers that brings out the poignancy. My hat is off to this Dad.

Polly Kahl said...

Wow, crying a little from that poem. Sure wish the Aspergian I love had had a father like that. It also could've been written about our son who is highly gifted. It's not just the Aspergians who can be annoying and exhausting. Kudos to Ray for being such a good dad, and thanks John for sharing it with us. It's a good reminder to be patient and kind no matter how irritated we might be.

Michelle O'Neil said...

That was beautiful Ray. Thanks John for posting it.

Lisa said...

Ray's poem brought tears to my eyes.

Jan said...

John - I wonder what you would be capable of with a father who continually shows such great love for his son through these very difficult years. I hope that your story of success outside of the school system will bring further hope to Ray and James. Ray, you are very well spoken of your love and trials, I am so glad John's book is helping you see even more in James. I am wondering, has James read the book? I am very curious on his reaction. ?

Kim Stagliano said...

Jan, if you're talking about what John R. would have become with a kinder more loving father I'm laughing (given his many successful careers already.) King? Chairman of the Universe? :)

jazzdad43 said...

No, James hasn't read it yet, but I will make sure he does. I have talked to him about John R. James is intrigued about John's adventures with KISS.

Ray

The Muse said...

Kim & Jan,

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.

Chumplet said...

That was a heartfelt poem. Thanks for sharing.

Your book is all wrapped up under my tree. I can't wait to open it on Christmas morning.

Jan said...

kim and the muse - you have both covered the range of possibilities - I am hoping James and others will get a short cut to stardom of their own through John's book and stories and INSPIRATION knowing the positive possibilities and focusing strengths. Jazzdad, I hope you and James will stay in touch with this extended group of caring Moms and let us help you with hope and our caring. If KISS get's his interest, go for it and let's see where it leads. It's the Jameses of this world who hold the promise of great discoveries. May the High School not suck out all his strength with their structure that doesn't match with his own talents. I am glad to share with you all in the stories of growth and understanding.

~Francesca Bocca~ said...

Dear Mr.Robinson,
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

Piglet said...

wow, this is amazing. i can only imagine how inspiring it is for you to receive letters like this.

Michael said...

Nice poem. I object only to the use of the word "mild" -- it's obvious from the rest of the poem that there is nothing "mild" about the effects of AS on the boy and his family, schoolmates, teachers, etc.

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

Matty said...

Simply a great post.

Maprilynne said...

Being different includes so many things. As you constantly point out, it means unique and special. But often, and sometimes usually, it also means difficult and frustrating. I really enjoyed this freeverse poem because it is so telling of the love and hopes this father has for his son, and how difficult it can be because he wants so badly for his son to succeed. Parenting is so like that only in extremes when you have any child with a special need. I see my own worries for my children reflected in this father's words.

jazzdad43 said...

Michael,

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.

John Elder Robison said...

Francesca, the Italian edition of Look Me in the Eye will be appearing next year. It's in translation now.

Any of you can write me personally at john@johnrobison.com

Angulimalo said...

In response to the poem. I should be so lucky as to have a father that loving.
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.

J said...

To John: Your desire to support parents and people on the spectrum is evident through your posts and from comments on other people's blogs. Thank you so much for all you do and all you have done.

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.

Sustenance Scout said...

Love this poem, John. Thanks so much for sharing it and thanks to Ray for writing it. What a tribute. K.

drama mama said...

Powerful poem, Ray. Thank you for sharing it with us, John.

Megan said...

I am writing this through a mist of tears!! Thanks for publishing Ray's poem..I love a good weep with my morning coffee. ( as Foghorn leg Horn would say..that's a joke son ).
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!!

The Muse said...

Megan,

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...

b said...

jazzdad43, I have a remarkable son with AS. I remember my experiences at school and realizing that America public schools are designed for specific purposes for specific people. They are designed to educate average people as cheaply as possible. If you look at one standard deviation of the bell curve of approximately 67% of the students, you can also see that the schools are not even designed to educate that range of students.

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!

Fi said...

It's always moving to read comments from a parent who has had similar frustrations, fears and trials as your own. There were enough bits in Ray's letter that reminded me of my 7 year old to bring a tear to my eye, but to also make me feel good about the fact that I pushed for a speedy diagnosis for my daughter over the past few months.

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!).