I
am not in the habit of contacting authors to
praise their work. With that said, I felt I
needed to specifically tell you that your ideas
and your son's words have had a tremendous
impact on our family's life. I love when I
feel that I am present at the deconstruction
and revolution of a concept that is long overdue
for a renovation. I think low-functioning autism
is such a concept and people like you and your
son are major agents of change. Much of the
time I was reading your book I kept thinking "Give
me the details!!! HOW did you teach your son
literacy skills and how did you help him with
the motor skills necessary to type? I am guessing
this omission was somewhat deliberate so you
could maybe write another book or share these
ideas elsewhere. So, my question is when or
where might we see more of you and your wife's
methods?
Thank-you for your time. –J.B.
I heard your interview this morning
on NPR and was moved to tears. It isn't easy
do do that any more. These tears weren't out
of sadness but a strange sense of hope. His
no-frills observations are hyper-poetic and
his ideas have a genuine raw humanity that
gets lost when most people communicate their
beliefs. In all honesty I am looking forward
to reading your book and do hope that DJ
has a chance at publishing more of his own
ideas. Please keep up the good work. –F.W.
I just finished your book. It is an awesome
work of love. You and your wife have liberated
a wise soul in your son DJ. Thank you for not
giving up on him and for bringing his story
to the world. I will recommend your book to
my friends and family and also to the autism
group (ASCEND) that I belong to.
I
too have a son with a form of autism - Aspergers.
His name is RJ and he is 11 1/2 (or "almost
12" as he likes to remind me). He will
be starting 6th grade in the Fall. He just
completed his first year of middle school in
a mainstream class and is a straight A student
too. We've been on this journey since he was
in Kindergarten. He has shown me that the experts
are not infallible. Kids like ours continue
to prove them wrong. Books like yours show
the benefit of inclusive education and the
importance of giving every child a chance at
a fulfilling life. I shutter to think that
DJ might have remained locked outside the world
of communication without your interventions
and more importantly, your abiding love. Thank
you for sharing your story with me. –F.B.
I heard Edward Albee on an NPR last week.
He suggested that art is only art if it changes
the audience. The book, Reasonable People,
profoundly changed me. I was so lucky to hear
you three speak at the CARD conference. I could
hear your voices and see your faces as I read
each page. I found the mix of prose and poetry,
academic and personal writing, thoughts from
the head and words from the heart/gut, helping
me accept these at times seemingly opposing
threads in my own life.
I took my son to a museum on the UF campus
half-way through reading Reasonable People.
I was wary, but remembered your words, Emily.
You asked me why we don't see more people
with Autism every where we go. I didn't really
hear you at the time, but have thought a
lot about it. Have thought of my new friends
I have met through CARD who seem to be becoming
more and more "house
bound", afraid to offend others who
might not understand their children. So,
courage in hand, off David and I went to
the museum.
We had a nasty run-in with a security guard
-- a brief fleeting exchange that left me
filled with rage. I sat down with David and
let him color, and found myself writing to
defuse myself. What "came out" was
a poem, a poem to the security guard. I folded
up the original, stuffed it in the donation
box, and left the museum feeling like I could
come back to the museum and that I would
not let this keep David from exploring the
world with me..
A huge thank you to all three of you. The
book Reasonable People has not only left
me changed, but still changing, healing,
loving. –B.J.
Dr. Savarese,
I wept as I listened to
your interview on NPR. I was so moved, I
ordered a copy of your book! As I've been
reading your book, I feel a "connection" to you and your wife
and my initial thoughts were "these people
get it!" I've been telling my educator
and social work friends to read your book!
As a mother of a 15 year
old adopted son with "mild" cerebral
palsy and some Asperger traits/behavior, I
can relate to your story. We adopted KJ when
he was 9 years old. We knew he had CP and were
told he was mildly retarded and socially and
developmentally delayed, having lived in an
orphanage for disabled children in South Korea
since birth. We've had people tell us "they
admire us", "respect us", "feel
sorry for us" etc. We don't ask for admiration
or sympathy. We wish people would just take
the time to get to know KJ! If they took the
time, they would discover that he is a delightful,
endearing, humorous, and sensitive young man!
Having no experience or understanding of disabilities,
we naively jumped in with both feet. These
past 6+ years have been some of the most intense
but rewarding and enjoyable years of our lives!
We/KJ have had a good public
school experience for which we are thankful!
Walking, writing, vision, communication and
social "skills" are
some of KJ's challenges. We take one day at
a time and rejoice in the small and big accomplishments!
He has been a joy and delight! A wonderful
gift to our family.
Thank you for sharing your
story. –J.L.
I just finished your book today and found
it incredibly powerful on so many levels. Congratulations
to you, Emily, and DJ for sharing your family
story in a such a personal, thoughtful, way
and for educating the reader about autism,
trauma, and adoption.
I was struck by how deftly you wove the dialogue
and personal stories with poetry and literature,
while at the same time offering fantastic
treatises on autism, trauma, and adoption.
It was at once a book of deep content and
deep emotions.
It was fascinating to follow your and Emily's
thinking and analysis of DJ's words and thoughts,
what they could possibly mean, and what might
be logical next steps. As educators, you
got right down to examining each word! Also,
it was interesting that DJ's cognitive growth,
which was absolutely amazing, helped build
a scaffold for him to process thoughts and
ideas, and especially in 6th grade, to make
choices, and begin to turn toward "unhurt." I
loved DJ's chapter, hearing his thoughts,
his essays, and his wonderful account of
being in Rome with Grandy.
I have recommended the book to friends and
colleagues--one who is the head of the office
of principal preparation and development for
the Chicago Public Schools, and I will continue
to peddle it. P.S.L.
As a graduate of Boston College, I visited
the website for the university magazine and
discovered, with great delight, your lecture.
Your lecture on your book, Reasonable People:
A Memoir of Autism and Adoption, which you
gave at Boston College last fall, was the
most compelling comment on autism. I have
a family friend who has an autistic child;
he is now at the cusp of adolescence. An
observer would see Ian, my friend's son,
as 'low functioning'; he does not speak and
he expresses his feelings by wringing his
hands or covering his ears. And yet there
is 'something' beneath Ian. It seems that
Ian (and DJ) have feelings that are beyond
our perceptions and thus challenge our own
'gut feelings'. It is possible that Ian (and
DJ) could perceive various 'karmas' that
we 'normal' types brush aside. DJ's 'take'
on the death of your sister-in-law's child
blew me away. One of my favorite episodes
of Ian's life happened several years ago
when he and his family visited my home for
the first time. Ian's father had planned
to take us to the zoo, but he had forgotten
his family entry pass and we did not have
the cash to cover the zoo's entry fees. So
we all stopped at my home for snacks. Ian
headed right to my bedroom and decided to
lie on my bed! He also examined a stained
glass ornament which featured a rainbow.
What was his view of my place. Evidently,
he felt quite 'safe' at my home. Was there
good 'karma' in my house? I could not tell.
But Ian made it clear; my place was OK. I am now itching to read
your book. Please continue your research
on autism and to share DJ's life with us. –T.A.
Hi DJ,
I recently read your story, and it had a tremendous
impact on me. I have a great deal of respect
for you and your parents. The three of you
are courageous people, and you inspire others
to be stronger and braver. Thank you for making
me want to be a better person.
I came across the beginning of a poem by Walt
Whitman this weekend when I was looking for
a birthday card for my mom. I was curious about
the rest of the poem, so I looked it up on
the Internet. When I read it, it made me think
of you, and I figured I should share a piece
of it with you. You may very well have already
read it, but here it is anyway.
from Song of the Open Road
From this hour I ordain myself loos'd of limits
and imaginary lines,
Going where I list, my own master total and
absolute,
Listening to others, considering well what
they say,
Pausing, searching, receiving, contemplating,
Gently, but with undeniable will, divesting
myself of the holds that would hold me.
I inhale great draughts of space,
The east and the west are mine, the north and
the south are mine.
I am larger, better than I thought, I did not
know I held so much goodness.
--K.N.
I just want to tell you, that I find this
sentence about your son's linguistic style
very moving:
"By emphasizing the
beauty of such communication, we can all
push back against the tendency to pathologize
difference."
The fact that your son
does master typical semantics, syntax etc.
but still expresses himself in other, and
preferred, ways, goes a long way in disproving
the ever present claim in scientific (autism-)literature
that "different" equals
suffering and should be seen as something to
avoid, be it through psychological intervention,
medicine, genetic knowledge or prenatal screening.
I'm looking much forward
to reading your book. –D.R.A.
Your son and mine (now age 13) have very similar
histories. I have always believed that my boy
was thinking and hearing; unfortunately, his
communication (even non-verbal) is minimal.
Still, I remain hopeful.
I have asked my son's teachers and staff to
read your book. I know that they are very busy,
so I would like your permission to copy DJ's
chapter...it is short, so it is likely that
it will be read and passed around...and hopefully
will entice them to read the entire book.
May I have your permission to do so?
Thank you for writing your book. It is one
of the few books on autism that I have found
helpful.
Best of luck to DJ. –H.F.
I read your wonderful book
with great emotion and interest. I remember
when you were in the process of adopting
DJ when we met you in Vermont many years
ago, and was amazed and excited to hear your
voice on NPR this fall and realize it was
you! I bought and read the book right away
and found it extraordinarily moving and beautiful.
DJ, you are a terrific writer and a very
sensitive and intelligent person, and I hope
to meet you some day. –K.O.
I recently purchased your
book where you talk about your experiences
adopting D.J. While I have not been able
to finish the book yet, I can already tell
I would love to meet you and him, if it was
ever possible. I, like him, have an autism
spectrum disorder (Asperger's in my case,
so much higher functioning), and I, like
him, have also experienced more then my fair
share of abuse (though most of it was physical,
not anywhere near what he had to endure,
not even trying to say it was.) I am going
into special education next year and I am
trying to meet more people to help out so
I can see if this is the right field for
me, so when I stumbled onto your book, then
stumbled onto the fact that you live so close
by (I am in Cedar Rapids most of the time,
attending your rivals in Coe College), I just
had to email you. I hope you don't mind that
I did that, I also hope you don't mind if there
are a few errors in this message (you know
how people on the autism spectrum have gifts,
spelling and proper etiquette aren't mine,
sorry.) Well I hope this message reaches you
and your family well and I hope you can get
back to me soon. –B.G.
Hi to whoever reads these things....
I found Dr. Savarese's book enlightening,
infuriating, inspiring, not to mention informative.
I've got a little guy named
Samuel age 5.5 with dual diagnoses autism
and Down Syndrome. I was really struck by
the idea explained so well in Dr. Savarese's
book of autism as physical or motor-planning
handicap. The concept really seems to ring
true insofar as explaining the things Samuel
can and can't do. The concept gives me theoretical
justification for why Samuel makes so much
progress with "hand
over hand" teaching and with peer support.
I recall mention in your book of some techniques
for teaching reading to more or less nonverbal
people like DJ and Samuel. Would you please
be able to point me in the direction of more
specific and more complete information about
these? It could potentially free another prisoner.
Thank you very much for
your attention to this matter, and to Dr.
Savarese (and DJ) for writing Reasonable
People. –A.W.
Mr. Savarese,
I just heard you on the Diane Rehm show.
As a foster (soon to be adoptive) parent,
and the uncle of an autistic child, I was
especially moved by DJ’s story. It
seems to me that your family has shown exceptional
strength and love, and helped DJ grow into
a fine young man with lots to be proud of
and the potential to do much more. Good for
all of you!
DJ –
I read the autobiography you wrote for fifth
grade. I want you to know that in fifth grade,
and even now, I want to fly too. Who knows – maybe
one day we both will!
Good luck and, as I like to tell my kids
when they do something especially good, “You
rock!” --J.C.
Shalom DJ.
I'm a father and I write in an Israeli blog
(in Hebrew) about autism from points of view
of human rights, ethics and parenting.
I would like to ask for you permission to
translate your letter to former teachers post
to Hebrew, so Israeli parents will be exposed
to the message. It will be a honor to have
your permission. And needless to say, I will
accept it with honor also if it will not be
given. And of course, the Hebrew version (if
permitted) will refer to you as the writer
and will display a link to the original post.
Many thanks for your insights.
Wish you all the best. –S.G.
I just watched 360 last night -- we taped
it, as it was a bit late for the Lutz's. I
am very happy that the special focused on the
individuals, rather than their parents. I had
never heard of Amanda previously. In listening
to her talk, though, it pains me to ask the
question of how many individuals with autism
are not recognized for their potential and
not given the chance to communicate and express
themselves. I loved seeing DJ, he was such
a cute curly headed kindergarten boy, and how
he's so . . . grown, just like Julia's other
buddies from those days. I love seeing that
smile, and am continued to be amazed at his
insight: again, not because of the autism,
but that as a 15 year old, he expresses himself
so concisely and eloquently.
I passed the message onto
our friends who live in Miami with David,
their 6 year old son. They emailed back and
were thankful for a "non 'generic' special on autism, one
that actually gives hope." --R.L.
Thanks for your book, for
your courage. I am a school psychologist
in texas – awaiting
your wife’s writings on how to include
nonverbal children with autism in the regular
school setting. –aa
Dear Prof. Savarese,
I just finished your book, tucked in between
trips to therapists, construction of syllabi
for teaching next year, teaching a summer
course for extra money, writing my own journal,
doing floortime, and teaching my sons to
read. It was a gift. Thank you.
It’s rare to find a book written in
language that seems designed for me, another
academic, about the questions and political
concerns right at the center of my current
intellectual and personal life (and you cite
many of my favorite novelists, too). My son
is verbal, and compared with DJ has fewer
obstacles (he is diagnosed with PDD-NOS),
but we too had to struggle to get him into
a NT classroom, had to negotiate competing
strategies for communication and socialization,
had to negotiate career and family and marriage.
I’ve been writing about him and this
struggle for four years, a short journal/essay
a week to his therapists and my family and
friends, and I’ve spoken about it publicly
at Sarah, and written a dozen (unpublished)
essays just out of anguish, but I’m
increasingly unsure about trying to make
it into a book for many of the same reasons
I believed you struggled with. I have other
children, too, and one of my colleagues urged
me to expand my “letter” to include
their lives (which I have, for the last two
years), and the balancing act between my
aspirations as a writer, and their privacy
needs as a family seems hard to master. And
yet you offered me so much with this glimpse
into your family.
Again, thank you. –L.C.Z.
hi, my name is desi, i'm a 26 year old aspie.
and i wanted to express some thoughts to you.
i finally got around to listening to the interview
you did for Diane Rehm, and i want to thank
you. not just for writing the book, and for
doing the interview, but for what you've done
for DJ and most of all for the fact that you
get it. that you understand that autism is
not something that needs to be cured, although
there are times that it needs to be compensated
for. and this, to me is what you're doing for
DJ. because of my age, and some other factors,
i was unfortunate enough not to be diagnosed
until i was 23, and this resulted in me not
getting a lot of the help i needed. i only
just managed to complete hight school, and
was unable to complete college... sadly this
was partially due to a lack of self understanding
that an earlier diagnosis may well have given
me. it makes me very happy to hear about cases
where others on the spectrum do get the right
support and help and are able to be themselves...
but in the best way that they can.
once again, thank you. –D.K.
Mr. Savarese:
Just finished your book and found it incredible.
I laughed and cried so much I had no emotions
left when I was done. You three are the very
essence of what love is. I was profoundly
moved by the fact that none of you ever gave
up, and it was clearly hell so much of the
time. What amazing hearts you have.
I wish you all the best in the future. I
was so encouraged to see the news about D.J.
and his test results on your website. The
only somewhat parallel experience I've ever
had is in seeing my very premature grandson,
now 6, be moved to the gifted program in
kindergarten this past year. We were all
terrified he would never be able to attend
regular school! You just never know, and
can never give up.
Please keep us all in the loop on your website
as to how you're all doing. I'd really like
to see pictures. I wasn't sure if the boy
on the cover of your book was DJ or not.
Cheers and thank you for writing,
K.B.
Hi DJ and Mr. Savarese,
I met Mr. Savarese at the Vibe coffee house
giving a reading from the book and I had to
buy it. I have now finished reading the book
and I just wanted to give praise for it. I
have many pages tagged and highlighted because
what you had to say was something I want to
remember. I cited DJ in a school response paper
to standardized testing. I am so proud of DJ!
Thank you for writing such a powerful book.
Have a happy Thanksgiving! --E.D.
So here we were, my Grinnell
freshman and I driving to his tonsillectomy,
discussing in the car how to address you in
an email. Jacob had given me a signed copy
of your book and I had read it, practically
in one sitting. He recommended "Professor Savarese" I
voted for "Dear Colleague", Ralph
seemed too informal, and before we knew it
we were at the hospital.
Two painful (for him) and irritable (for
me) weeks later I have still not figured
out how to call you. But I have figured out
that I better write, regardless, since your
book has made an indelible impression. I
was struck as a psychologist, a reader, a
parent, not necessarily in that order. As
a cognitive (not clinical) psychologist I
learned a tremendous amount about autism
despite the fact that I have close friends
with a daughter who has Aspergers, and thought
we had been through most if not all of the
literature. As a reader I was mesmerized
by your ability to teach objective facts,
AND allow emotions to run freely, AND make
use of wit as well as almost poetic language
- all without distancing yourself from the
painful and at time almost unbearable subject.
More importantly, as a parent, I can only
begin to comprehend what it must be like
for you and your wife to be on call and without
a real roadmap all the time while consumed
by love of and worry for your son.
What haunts me most, I think, is the raw
honesty with which you assess your own and
your family's vulnerability and your willingness
to take risks. Haunt is the wrong word -
I think I want to say admire, or be envious
of.
So, your book provided much food for thought
both with regard to this seemingly epidemic
disease of autism, and with regard to issues
of courage, devotion and reason.
Can't wait to see what you'll teach my son
- eventually.
Cheers, dear colleague, Professor Ralph Savarese. –F.H.
I was moved by DJ's story on Anderson 360
Monday night and my heart pours out to this
wonderful child. I see in autistics such innocence
that I want to reach out and hug them; you
must be very proud of your son; you and your
wife are so very lucky. I have a condition
too; I'm bipolar and gay and feel the world
doesn't understand me at times or rather, that
I don't fit in.
Please tell DJ his story moved me to tears.
I feel so sad that he had such a traumatic
childhood. I will certainly purchase your
book Dr. Savarese. –J.B.
Your book was phenomenal and
I passed it along to a woman I am seeing,
a pianist and teacher who has an unusual
student that was struck by lightning and
then became something of a musical prodigy.
He has been immortalized in a recent book by
Oliver Sacks called MUISOCPHILIA... Anyway,
Erica loved the book as well and suggested
I send a copy to Dr. Sacks. I Just thought
you would like to know. –P.B.
Congratulations on publishing
an exceedingly thoughtful and important book.
I teach a senior seminar on the Politics
of Disability at Michigan State University
[a small class of 15]. I assigned your book
this semester, and the students are so engaged
by the topic that we are planning on driving
an hour and a half to see your talk at the
Bloomfield Hills Association for Special
Education on November 8. Is there any chance
that my students would have an opportunity
to meet with you and discuss in greater detail
some of their questions about the book? I know
that you are very busy with the publicity for
the book, but we would love to have a chance
to personally engage with you on many questions
that have arisen in relation to your wonderful
book if it is at all possible. –J.G.
I was researching schools
for my son this evening and an image of your
book came up on the Potomac School website.
That led me to your interview on the Diane
Rehm show. God bless you and your wife; you
are incredibly good people. I wish you the
best with your book and your son. –E.F.
The most meaningful and
memorable reading I did this summer was your
book. I have wanted to write you for the
past three months or so, but have failed
to do so because there was so much to say.
Your love and commitment, the interesting
information on autism, the additional trauma
facing your family, and the way all was presented
was done beautifully. The writing and the
scholarship were of the highest caliber.
I was deeply moved by all I read. Thank you
for writing the book. –G.N.
The article about you in today's Des Moines
Sunday Register touched my heart deeply. What
a wonderful service you provided by sharing
your lives and selves with others, to help
us all learn to understand each other.
One of my grandsons has Asperger's Syndrome,
and like you, DJ, was misdiagnosed -- until
he was 11. Although he can speak, and does
not have to rely on typing, he spent years
frustrated and struggling. He was kicked
out of regular schools for biting and hitting
when he was young, and finally spent a few
years in a special school to help him find
his focus, and get a fresh start. Now he
is attending classes like you are.
Your story helped me understand something
of how my grandson Benjamin feels. He lives
in Phoenix, Arizona, and we are in Michellville,
Iowa, not far from Grinnell. We are not able
to spend much time with him, and I appreciated
so much reading about your anxiety, DJ. Thank
you.
Benjamin has "meltdowns" which
no one understood for years, because he was
lost in the crowd of "ordinary (neurotypical)
kids. He was not distinctive enough to be
identified as someone with a different way
of perceiving life, rather than a naughty,
undisciplined boy.
I knew that Ben was afraid, but not what
to do to help. Your book will certainly be
a great inspiration to our whole family.
Ben counts on his parents, just as you do,
DJ.
Have you read Temple Grandin's book about
herself? She is autistic, with a rare gift
for understanding animals and people, and
a wonderful writer. In that book (I can't
recall the name of it now), she speaks of
her comfort and healing from being touched.
Know that you, DJ, are absolutely on the
right track. All of us need to free ourselves
-- from anxieties, from whatever limits us.
Our brains can change, with persistence and
focus. A stroke three years ago is teaching
me that much of what seemed lost can find
new neural pathways.
I look forward to further reading from you
both. –O.W.
I just read your book, Reasonable People,
and it's amazing. I couldn't put it down; in
fact I almost read it through in one sitting.
It's an incredible life you've been living
and it was priceless to be able to catch
up with you through your book (which was
surprisingly revealing and intimate). And
the book itself is so masterfully written.
You marshal scientific theories, Lacan, a
political critique of late capitalism, and
much else into such a compelling personal
narrative--bravo!
Your book raises a lot of great questions
about how we define a family, and how being
a parent can radicalize us or make us more
conservative.
I'm already composing a mental list of all
the folks for whom I plan to buy your book.
I felt horribly when I read about your own
health issues. –A.H.
I set out today on the
4th of July to paint my bathroom, and ended
up sitting in my kitchen sobbing while listening
to the show about DJ on Diane Rehm. I was
so moved by DJ's story and by Ralph's telling
of it. I am the mother of two great kids,
ages 12 and 11, and I have felt both moved
and directionless in what feels to be a calling
to help children less fortunate than my own.
DJ's story inspired me to commit myself to
moving forward in determining what that calling
is, rather than waiting for some voice in
my head (divine or otherwise) to tell me
what it is. I am buying the book and will
hit myself over the head with it if the reading
of it isn't sufficient inspiration. So I wanted
to say thank you. –B.W.
I found the article in this morning's Des Moines
Register to be of great interest. I will
order your book today and read it before
asking questions about how you have managed
to work with your local school system.
I am an attorney practicing generally, but
in substantial part, in the area of special
education law. You may be aware of an ongoing
special education legal matter in which school
personnel were physically restraining an eight-year
old girl with autism, and confining her for
long periods of time in a school storage closet.
Another attorney and I represent the girl and
her parents in this mind-bending matter. While
we won her due process hearing on all of the
14 points set forth in the action, the school
district and AEA are appealing the decision.
As the parent as an adult child
who does not have autism but who is decidedly
neuroatypical, and as the former coordinator
of services of students with learning disabilities
at The University of Iowa for 12 years before
entering law school, I sense that you share
the passion that Curt and I have long-possessed
for affirming the lives of children with disabilities.
I will look forward to
reading your book, and wish the best to you,
Emily and DJ. –M.R.
We read the article in
the DSM Register today and went on to view
your website. We live in Iowa and have 3
biological sons, the 2 youngest have Autism.
Justin is 7 and is non-verbal and still wears
diapers. He is slowly learning to communicate
by typing and your son reminds us much of
our son. We have every hope that he will
some day be able to communicate with us in
the way that D.J. is able. Our youngest son,
Tyler, is 6 and is able to communicate verbally
and we were able to get him out of diapers
at age 4 years and 10 months. He did not
speak a word until he was 3, but it came
to him at age 3 and he has never stopped
talking since! We are so grateful that Tyler
is progressing, but it is very bittersweet
to see him surpass Justin in these areas.
I fear every day that an illness or accident
will befall me or my husband and Justin will
end up in a foster home such as D.J. did.
I worry every day that someone will treat
Justin the way that D.J. was treated as a
young boy. I am so glad you were able to
bring DJ into your family and make him feel
so secure. We work so hard to help Justin
and we love him so much, it breaks our hearts
that he cannot communicate effectively, but
DJ's story has given us more hope than ever
for Justin. Thank you for sharing DJ's struggles
and successes with your article, website
and book. –K.M.
I just finished reading
your book. What a wonderful experience. You
are a gifted and talented storyteller and
above all a loving, kind and demonstrative
father. I was so touched by your beautiful
story and by the family that you have helped
to create. –J.J.
Thanks so much for sharing your family's story
in Reasonable People. It is an incredible testament
of love, determination and hope and it had
a great affect on me. You must be so proud
of DJ and all he has accomplished.
I wish you, Emily and DJ
all the best and thank you again for sharing
your family experiences. –D.L.
I heard DJ's story on the Diane Rehm show
this morning. Bless you and your wife for saving
that precious boy! I especially enjoyed his
writings. Please convey to DJ what a articulate,
sensitive young man he is and I wish him all
the best in everything he does in life!
God bless all of you!
Happy 4th of July! --J.D.
My sister sent me a copy
of your (and DJ's) book Reasonable People,
and I have just finished reading the introduction.
My daughter, an 11-year-old non-speaking,
un-house-trained "classical" autist,
has been using FC since she was 5, shortly
after it was discovered that she had independently
taught herself to read. Your arguments and
conclusions in the book's introduction resonate
both in the general and, in many cases, with
the specific.
I particularly liked the case of the multi-lingual
autist who could be 'tested' by using non-speakers
of the language in use as facilitators, proving
the truth of FC. In our case, my daughter has
a number of facilitators, but her 'voice' resolutely
remains hers: her fascination with and love
of language and the particulars of her phrasing
remain consistent, regardless of who is holding
her wrist.
Her ability to communicate
abstract thought and her considerable emotional
'literacy' has, for us, led to a total distrust
of autistic stereotypes as promulgated by
the scientific community (Wing et al). An
example: I suffer from intermittent depression.
One day she typed that she found me, in her
words, "hard
to read. I'm never sure whether you are up
or down." This immediately tells me two
things: that she is concerned about who and
how I am and is attempting to empathize, difficult
as that may be (that difficulty stemming from
who I am, rather than who she is), and that
conversely she is able to "read" other
people.
Like DJ, she often expresses a wish to help,
indeed campaign for, autistic people. As an
old-school lefty I thoroughly enjoy their instinctive
radicalism!
I'll conclude by transcribing a poem she wrote
when she was six (her spelling and punctuation).
BEACH TIME
There beauty lies beneath.
Magical bounty topping the bouncy waves.
Misty, utterly glimmering haze bites my eyes.
Here moments are glittery dreams.
--M.P.
Hello, Ralph, and well met!
I just returned from the "Boys and the
Boy Crisis" conference in D.C. with a
deeper understanding of how much we all need
work like yours. As the father of a special
needs child who was harassed, derided and put
off by the system while getting him the help
he needed, I of course felt an immediate kinship
with you and your work. Your eloquence, and
that of your son, is truly historical in nature
because you have CHOSEN to make it so.
To illustrate this; there
was much conversation about boy/girl academic
achievement and the resistance to all-boy
classrooms by organized feminist groups.
When I pointed out before a panel of opinion
leaders that "we already
have single-sex classrooms; we call them 'special-ed'",
it was an aha moment.
I would love to interview
you at some point in the near future. –D.D.
Hello Ralph,
I have never read words so startlingly similar
to my own son's typed sentences than those
of DJ in your wonderful book.
It is a marvel, expounding on
so many points that I so sparsely tried to
offer in my own small book this year. While
I sang about the mountain, you climbed every
inch of it! I would love to send you my book-cd,
songs and stories inspired by my son, David,
who is 21, and has experienced his own share
of hell at the hands of the system.
Please let me know if this is agreeable to
you.
Thanks so much! --C.D.
I was touched to my core on hearing you, Ralph
James Savarese, on public radio a few days
ago. Please tell D. J. that he is truly a
most remarkable young man from whom all of
us can learn. I will share your website with
a number of people, and hope to buy the book
even though at this point, fortunately, our
family has not been directly touched by autism.
We are all touched, however, by your courageous
story, D. J. and by your courageous and persistent
parents who have invested their lives because
they believe in and care for you. –P.L.
Mr. Savarese,
Enjoyed hearing you speak on the Diane Rhem
show. Your encouraging and insightful comments
about autism were right on track. With encouragement
and love all things are possible no matter
who the child is.
My son was diagnosed in high school with Asperger's
Syndrome. Prior to this, he was seen as retarded
or borderline. He was misunderstood for years.
We kept searching for answers and when the
diagnosis came, it made sense.
Fortunately along the way,
we discovered what worked for my son. We
tried learning programs like Kuman and Sylvan
but the "group" dynamics
of these tutoring programs did not work well
for him. Old fashion one-to-one tutoring worked
best for him.
High School proved to be difficult because
of the social scene. This also had a negative
impact on his academics. Fortunately he survived
the high school experience.
Today he drives, works part time and attends
the Northern Virginia Community College. He
plans to attend George Mason University and
wants to be a writer. You were correct in your
discussion with Diane that there is no limit
to what people can do unless we limit them
ourselves! --J.M.
I heard your story on the Diane Ream show this
morning. Thank you for sharing your story!
Please continue to speak out about the importance
of acceptance and inclusion as you so eloquently
did this morning. I was particularly touched
by DJ's chapter and the letter he wrote to
the special school in Florida.
As a special educator who
believes in inclusive education (done right!)
I have seen great progress in children who
were considered "unteachable".
I know that we all have
a big challenge in convincing our education
systems, politicians, and the general public
in the rights to a quality education for
all children. An education that is truly
individualized to meet their unique needs
in the everyday world, not a segregated world. –A.K.Y.
Dear Dr. Savarese,
Thank you for your article
in the LA Times Your Adopting Who? My husband
and I are currently in the process of adopting
3 (amazing, gorgeous, adorable, talented,
hilarious, intelligent, loving...) "special needs" sisters
out of foster care. I don't know which is more
disconcerting -- the family freak-out (do you
know how difficult those children can be?)
or the beatifying friend (God has a special
place for people like you). Lots of people
want kids. It's not a public service. And,
our three girls, with their laundry list of
reported behavioral issues, behave like angels
for us. We're nothing special, all they needed
was a modicum of love and stability -- a chance.
And they've brought more love and laughter
(becoming a mom has made me a bit mushy) into
our lives than we could have imagined. So why
does everyone act like they should be grateful
to us?
Glad to hear I'm not the only annoyed adoptive
parent.
Thank you. –M.G.
Just to say that I have here a cutting from
the LA times with your marvelous essay and
do not quite know what to do with it. But before
I file it in the waste paper basket I wanted
to thank you.
Thanks. –M.C.
Dear Ralph Savarese:
I want to congratulate you for your splendid
book, but I really especially want to say that
the last chapter, by DJ, is among the most
beautiful texts I've read, and I fancy myself
a great reader (I'm also a writer, have written
two books). Your son says he intends to be
a writer: I fervently hope he will sustain
that hope at least long enough to write a book,
because I expect he will write a masterpiece.
I was in tears, reading his sentences, not
so much for what they said as for how they
are composed. It's the most extraordinary writing;
it makes Gertrude Stein seem old-fashioned
(and it's about time someone did that). There
is just nothing else remotely like it, and
I hope you'll pass along to DJ my sincere best
wishes and thanks. You and Emily have clearly
been superb parents. I myself once had the
privilege of knowing a young boy with autism,
and though brief, the experience (for about
a year, while I worked in the Upstate Home
for Children, in New York State, a dismal institution)
is among my happiest of all memories. I recall
one morning waiting for Chris's classes to
begin, I had him on my lap and was reading
to him, and he seemed to be following along
and caring about the book and ever so slightly
about me, and nothing has ever made me happier.
My boyfriend and I are interested in adopting--we've
been very frustrated so far--but your book
will certainly give us something to think about.
I didn't think we were up to caring for an
Autist; now I feel a bit more like we may be.
With very best wishes—
R.W.
Ralph,
I just wanted to thank you for writing an
article on a topic that is needed in the
Dallas/Fort Worth and Texas area. As a 'northerner'
that has been in Texas for almost four years,
the Fundamentalist Christians and their lack
of sensistivity has been astounding. It is
simply chosen ignorance and hypocrisy. I
was raised as a Christian in the Lutheran
Church, LCA.
My daughter is adopted. We traveled to a
foreign country to find our perfect little
bundle of 'special needs' child. She was
two when I first met her. As in the United
States, children above six months of age
have decreasing percentage chances of adoption.
By age five, a child, particularly in an
overseas orphanage such as my daughter's,
has a one percent chance of finding a forever
family. My daughter was displaying autistic
type tendencies, as they referred to her
behaviors, at the time of her adoption. She
also displays scars from physical beatings
either with her birth mother the first six
months of her life or with orphanage personnel.
The overseas doctor was very concerned that
we might not want to adopt her with her challenges.
Many other families had met her and chose
not to. She still has challenging days. What
is most amusing is when people comment how
'normal' my child appears. As if the rest
of us are truly 'normal'! I love my child.
Her originally labeled autistic type tendencies
now are more so likely in another category
of neurological. Now that she is has just
reached age six, our adoption agency 'up
north' and other experts have recommended
that her development is such that testing
will now be able to guide us. Either way,
she is my child. Yes, these children need
our love, as well as we need theirs. My daughter
has been the best that has ever happened
to me. I'm sure you feel the same about your
child. I try to educate those who do not
understand what they are saying when they
are aware of my daughter's background. For
those who would rather not be educated, I
choose to leave them to their voluntary ignorance,
in that is what they prefer and I have been
things to do like spend time focusing on
my child.
I commend you on your attempt to educate
the Dallas/Fort Worth and Texas area residents.
I must say though that it is possibly an
effort in futility. Now as a college professor,
and prior as a corporate executive, I have
experience in the workplace fighting discrimination
issues, etc. Dallas/Forth Worth has been
my most challenging audience to date. As
a note, I'm technically Caucasian, with this
mindset. :-) Take care.
Thank you again,
L.H.
I tore through your stunning book in 3 nights,
was blown away by it. On every level. Linguistic/intellectual
fascination with trauma material finally
trumped by sheer monumentality of your and
Emily's undertaking, DJ's ability, and inspiration.
I hope your book goes everywhere, and that
you're doing well in what must be a marathon. –C.K.
I cannot wait to read your book. My husband
and I have recently begun to foster a young
child with autism. I too am a teacher of
children with autism. So, many people see
only the autism I am lucky enough to have
worked with enough of these little people
that I can see the child. I met this child
in my classroom and felt compelled to help
she had been bounced with unsuccessful placements
and she was in obvious distress. I was compelled
to help and thank God my husband was willing.
We have been through 3 extremely difficult
months but the child is undeniably making
progress. There has been moments when I have
been concerned that this decision was to
much of a change for my family. I had a few
friends and colleagues question our decision
saying think of your family and I said I
am. I want to teach my kids to do what is
right not what is easy. I was speaking to
another friend and I said "It would
have been easier to look the other way." She
responded, "Obviously, for you Dawn
it wasn't easier." How accurate. Well,
I just wanted to tell you just the sight
of you book offered me relief that another
person understood - this is a good choice.
Helping a child is a good choice. Each time
the guard comes down and we see this little
child - her personality, her smile, her being
we are lucky. God Bless you in your decision.
Take Care. –D.R.
I wanted to thank you for an excellent article
on your child. Enjoyed reading it very much.
I also have an autistic child, who is now
23 yrs. old. (He is the asperger type) They
all start out the same - confusion, not aware
of what is going on. No communication. Didn't
know his name or ours. We were just people
he lived with. Very sweet, like a puppy.
People take advantage and mistreat them something
awful. My son’s teachers were the worst.
I finally home-schooled - I could not let
them do what they did to him. To this day,
they have no idea what they did.
With loving, kind and stick to it parents
- they can become something.
I never thought mine could drive a car. He
can. I never thought he would live on his
own. He is. He finally graduated from UTD
this year (after 7 years) and took a job
in New York - marketing (yes) We are so proud
of him. But only his close family knows what
he went through and what it took.
I would rather have an autistic child, because
they are so sweet, kind, giving (yes, in
their own way) loving and when they do succeed,
it means more than anything in this world.
Have fun and enjoy your son, it sounds like
he will give you allot of love.
I would love to hear back from you and Michael
would gladly talk about his aspergers.
He is still very sweet, kind and loving to
all of mankind.
Thank you again.
A mom, who knows --D.D.
Thank you for helping one child and every
child, and for writing the book.
My best, S.K.
Dear Mr. Savarese,
I just read your article in today’s
Dallas Morning News. I want you to know that
I am not in the habit of writing to strangers,
but I was touched by your story of your willingness
to adopt an autistic child. My own daughter
has been diagnosed with PDD and she is now
17.
She has been my pride & joy but I worry
about her constantly, most importantly for
her future. At least she is able to verbalize
her needs & wants like your son communicates
with you through the computer. I just wanted
you to know that I applaud you & your
wife for taking on this challenging but ultimately
rewarding responsibility.
Sincerely,
B.T.
Well, I'm not Newsweek but here is my rave
review. Really beautiful, reasonable book.
I just finished it last night. Actually,
I was so sucked in by it that it has been
my companion every night for the past week.
It is rare that I have the opportunity to
respond to an author of a memoir who I know
in "real life", so I hope you'll
indulge me. I figure you wrote over 400 pages
so the least I can do is write a lengthy
email.
The experience of reading was changed by my
remembering of Gainesville, Grinnell, you,
your tone of voice and brief references you
made in class that were elaborated in the book
(such as the story about the poem and Charlie's
stroller). I was even able to picture Emily
and DJ (though I never met them formally, I
saw them when I was out walking at Krumm one
day so I at least have a sketchy image). All
of this made the reading experience wholly
different.
I can forgive the GLAD trashbag reference
because you quoted my favorite Annie Dillard
essay (I keep a copy of it in my desk).
It is touching how you intermittently honor
Emily in the book like a bird alighting on
solid ground before flying off again. You make
sure that we don't forget her part.
At the end, when you discover
that you don't want DJ to focus only on trauma
and the past and begin to be firm about establishing
a different narrative for his life I was
reminded of narrative psychotherapy (related,
some might say, to constructivist therapy).
It strikes me that you and DJ were practicing
this kind of therapy. It's attributed to
a guy named White and if you haven't heard
of it you might find it interesting. It's
essentially about honoring people's humanity
by giving them the opportunity to "re-story" old,
stuck narratives in a way that is more empowering
for their present and future life. I was interested
in many of your reflections on psychotherapy
since I currently work as a therapist in private
practice. (Not to worry- I also still work
as a medical social worker with people who
have end stage renal disease.)
I positively cried my eyes out during the
parts about Charlie. You write sadness well.
To me, those sections are some of the strongest
and most effective in the book.
Of course, I took note
of the handful of places where you touch
on theology. We never discussed this but
you had somewhat of a reputation at Grinnell
as being anti-religion (my favorite quote
that you uttered one day in class is this: "I don't have antipathy toward religion,
it just leaves me cold.") In the book,
I sensed the primary theological theme as being
discomfort/anger with the notion of a God who
acts either as puppeteer or who refuses to
intervene in suffering when he/she could. I
agree that this kind of God- omnipotent, controlling-
is not worthy of devotion. I also strongly
identified with your awkward feelings in the
face of religious ritual. Towards the end of
the book, when the tone of advocacy became
strong, I started to think of Jesus...not roller
skating rink blasting Christian music Jesus,
but Jesus the friend and advocate of the poor
and oppressed. I am opposed to all kinds of
interpretations of Jesus- substitutionary atonement,
son of God, on and on- but not that one and
I thought of it when contemplating your ethic
of social responsibility. Yes, all this from
someone who spent three years in seminary and
has been through an entire denominational ordination
process. Call it research into humanity.
I so admire what you've accomplished in this
book. The blending of your intelligence and
emotion is artful. The courage to allow people
to be voyeurs of your life, to lay yourself
and your family out on the page in that way
(especially in such a small community as Grinnell),
is inspiring.
I will never think of the
words "great" "possibly" "free" the
same way again.
Best wishes as you tour
around this summer. –G.C.
Hello Mr. Savarese,
I just read your Op-Ed and wanted to send you
a note to thank you for your beautiful piece
in the Times. I'm the mother of a very young
boy (nearly 4) on the spectrum, and like your
son he is a warm, bright and complicated kid.
And like you, I get a lot of odd comments from
people who mean to be helpful (or not, I suppose)
and don't quite know what to say. So I am grateful
and delighted when I happen upon someone else
who can convey the joy as well as the challenges
of raising a different kind of kid. I've been
very torn about all the attention to autism
lately; it tends to go down the causation rathole,
focus on scary therapies, or applaud the "courage" of
the families and the "misery" they
endure. That's not our experience, and it sounds
as though it isn't yours either. –S.E.
It's taken me several days after finishing
your book to even begin to find words to express
what I think. It's incredible, Ralph. Lizzie
and I were fighting over who got to read it
first, and finally we resorted to having two
bookmarks in the same book. Neither of us could
put it down. Of course, being in the periphery
for some of your narrative (and even in the
room at times!) helped draw me personally in,
but I thought you had a perfect balance of
your personal narrative, the drama of DJ's
language and development, and just enough academic
and psychological content to ground it without
making it heavy. As was evident from the first
class I had with you, your passion is something
that comes out in everything you do, and this
book only further demonstrates that fact. I'm
glad you decided to include so much dialogue
-- at first it felt a little like reading Gertrude
Stein's "Tender Buttons," although
comprehension was much easier to come by. It
really made clear the sense of progression,
and, eventually, DJ's often poetic interpretation
of the world. And the poem that you wrote for
Charlie, my god. Rarely do my eyes tear up
enough to force me to stop reading, but that
poem did it. I realized that I haven't encountered
much of your poetry, if any. I remember trying
to goad you into reading during our seminar,
but to no avail. And now I know, after all
these years, why you write your e-mails with
one finger. All this time, I thought it was
just a quirk of yours! I'm getting long-winded
here, but I just wanted to commend you. "Reasonable
People" really is a huge accomplishment.
I'm sending a copy to my step-sister who works
with autistic children in a public school in
Des Moines. AND lest I forget to mention: Good
luck at all of your readings, but especially
at the one in a few days in Boston. You will
be reading at the bookstore I used to work
for: Porter Square Books! Everyone there is
wonderful and I only wish I could be there.
E.P.
Dear Dr. Savarese,
As an individual on the
autism spectrum (I am an Asperger's Autistic),
I enjoyed and appreciated your article in
the LA Times. You present a healthy and important
perspective that is sadly missing from the
modern discussion about the autism spectrum,
filled as it is with counterproductive and
inaccurate terms such as "disease", "epidemic" and "tragedy".
I will make it a point to read your book as
soon as I have the opportunity. –A.N.
Professor Savarese,
I just came across your poignant editorial
in our local paper, the Austin-American Statesman
and felt compelled to thank you for spreading
that message. I cannot begin to imagine the
joy experienced within your family and wanted
to let you know it touched my heart today.
Sincerely,
Ashley M. Burton
PS – One of my good friends, Ted Stafford,
used to play football at Grinnell…small
world! J
Dear Mr. Savarese:
I loved your piece in the Los Angeles Times.
All my best wishes to you, your wife and son,
and I look forward to reading your book.
As someone who hopes to
start a family of her own soon, I found your
piece very inspiring. Whether born to parents
or adopted by them, "special
needs" or not, it is love and commitment
that makes a family a family: and I know that
whatever form the family my husband and I will
create will take, it will require courage,
compassion and fortitude, which your loving
family appears to have in spades. –D.D.
I read your LA Times op-ed today and immediately
forwarded it to my husband. Like you, we chose
not to have biological children. We have just
-- in the last two weeks -- decided to adopt
a "special needs" child from China.
What an extraordinary and disheartening revelation
that the people, friends and family, who so
enthusiastically welcomed the idea of a cute,
smart Chinese baby into our world, fall quiet
the minute the SN word is uttered. Their reaction
caught us entirely off guard. We began to blab
blab blab about our decision-making process
and you could feel disquiet grow on the other
end of the phone. We've become ever more cautious
about who we tell what.
I really admire your courage,
because it takes courage -- that's what I'm
asking for from friends now - courage and
hand-me-downs -- to swim against the tide
of neurotypical cowardly self-protective,
in your marvelous inversion, "autistic" thinking
and be so bold about it. Thank you!
PS - My nephew graduated from Grinnell a few
years ago and I've never been prouder of his
affiliation!
Regards,
B.O.
Thanks for sharing your experiences in such
a wonderful, readable form. I have sent copies
of your book to my three sisters, my nephew
who is the father of a four-year-old autistic
son, and my grandnephew who will, in some sort
of miraculous arrangement of time and circumstance,
be entering Grinnell next fall. It would seem
that your work will benefit us all.
Isn't that called empowerment? --I.E.
I
read Reasonable People this weekend. If facilitated
communication is a practice meant to enable
those who might otherwise go unheard to communicate
with the assistance or support of others, then
certainly we are all practitioners. As the
various poetic invocations of the memoir demonstrate,
your own voice is indelibly tied to the devices
and inventive potentials of literature and
poetry. In that spirit, I would like to conjure
a philosophical voice which has augmented my
own communication and summarizes my reactions
to Reasonable People. This is a statement on
pragmatist ethics which I admire for its particular
willingness to substitute social and emotional
relevancy for technical sophistication. “Moral
development in the individual, and moral progress
in the human species as a whole, is a matter
of re-marking human selves so as to enlarge the
variety of relationships which constitute those
selves. […] Pragmatists think of moral
progress as more like sewing together a very
large, elaborate, polychrome quilt, than like
getting a clearer vision of something true and
deep. […]So it is best to think of moral
progress as a matter of increasing sensitivity,
increasing responsiveness to the needs of a larger
and larger variety of people and things” (R.
Rorty, Ethics without Principles, 1994).
The great achievement of
Reasonable People is to confront social injustice
through the life and actions of one family,
without becoming politically sterile. The
memoir inspires moral indignation and reasonable
political expectations that we can all contribute
to a more inclusive and egalitarian society
with efforts that are neither heroic nor
unreasonable, but simply sensible individuals
encouraged by compassion and interested in
building a more creative and diverse social
landscape which enriches our own lives. Americans
are often ready to make ‘easy reading’ of
memoirs such as Reasonable People, but the
unique virtue of this work is that it denies
its readers a packaged tale of triumph in
adversity, and demands a confrontation with
the circumstances of poverty in a collapsing
welfare state, and the oftentimes inequitable
perceptions of disability and difference
which permeate our social (and scientific)
lives. You will have to forgive the clumsiness
of my evaluation and expression (as I lack
any literary training), but Reasonable People
is simply a beautiful act of impassioned
love and rage. You managed to capture the
almost oppressive sense of hopelessness and
frustration which you, Emily, and DJ at times
faced, while simultaneously capturing the
enduring love and hope which paradoxically
filled those same moments.
I also wanted to add a word to DJ. If his
dream is to become a political freedom fighter,
then he has certainly achieved more with respect
to his aspirations than many of us can hope
to do in a lifetime. In showing the courage
to allow his story to be told, he has shown
the determination and fearless spirit which
it takes to inspire radical political action.
I hope that he continues to write, and that
Emily will soon publish an accompanying work
on inclusion in the classroom, as the world
is a certainly a richer place with the voices
of all the Savareses in it.
--Cain Elliot, Warsaw, Poland |
