Katherine ‘Katie’ McCarron

23 May

This is about the third draft of this post that I’ve written. The others were too angry or too sad to be constructive or valid. This is an awful story for numerous reasons. First, Katherine was three years old. Little more than a baby. Secondly was the manner of her death. Her mother took a plastic bag and suffocated her with it. I am finding it difficult to move past the awful reality of how terrified Katherine must’ve been in her last few minutes alive.

Katherine was autistic. Her mother was a doctor. Friends are quoted as saying that she spent time on forums helping other people. As far as her child went, it seems she was deep into the ‘treatment’ option. A post touching on Katherine’s death confirms that McCarron was a supporter and purveyor of biomedical treatment:

Dr. McCarron (a pathologist) was asking me for my experiences with the Geier protocol. (her daughter Katherine was not on the protocol….She was a friend of FAIR’s medical director, Dr. Ayoub… and pretty friendly with Julie, our research director (with whom she’s had several phone conversations). She is such a smart lady… and caring person/loving mother who knows so much about biomed, I had actually thought to invite her to JOIN FAIR!

A friend of hers states:

Meanwhile, Karen McCarron had busied herself in an effort to find clues to the puzzle of her daughter’s autism. “She read every book. She was trying so hard, pursuing every lead,” the friend says.

I wish that Karen McCarron had not been looking so hard for clues to the puzzle of her daughters autism. I wish instead that she had concentrated on looking for clues to the reality of her daughter. I wish that she had read the recent paper on acceptance bringing benefits instead of reading every book, pursuing every lead to find clues to autism. Her friends go on to say that she had become disillusioned and worried as Katherine seemed to ‘begin regressing’. Up until then she had been attending a specialist autism clinic in North Carolina. I wonder what sort of clinic it was. Maybe it was this one with what seems to be a TEACCH style program. Then again, with someone who ‘knows so much about biomed’ it seems doubtful. Who knows for sure? Not me.

The upshot of all this was that…

The setback only exacerbated Karen McCarron’s difficulty in accepting her daughter’s condition, her friend says. Unlike coping parents of autistic children, McCarron did not go through a grieving process.

This grieving process is necessary. Jim Sinclair in his outstanding essay Don’t Mourn For Us says:

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they’ve been looking forward to isn’t going to materialize.

This is true, but as Sinclair _also_ states, one has to separate grieving for an _event_ and grieving for the _child_, which is not healthy.

…But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them.

It sounds like McCarron was unable to separate the event from the child and the quoted submerging herself in the ‘effort to find clues to the puzzle’ certainly bears that out.

The great tragedy in writing this piece is that I’m aware that I know much more about Karen McCarron than I do Katherine. No paper has written a piece about what she liked to do. No paper relates what her favourite toy was, or if she liked to rock in front of the TV. I try to think of her doing these things as a way to stop thinking about the way she died. However, I have read lots of pious exhortations to pray for Karen McCarron. The pompous piety of such drivel makes my stomach churn and reminds me of other deaths of autistic children where there were calls for prayers for the family and scant sympathy for the dead child concerned. This may be a first (and possibly last) for this blog but I totally agree with Lenny Schafer when he wrote in a recent SAR:

….when a child is killed there more is involved here than a debate over the proper level of support services families deserve to expect. The first and foremost response to the news of such horrible things of a child being so destroyed should be moral outrage. The first reaction should not be “oh poor mom, if she only had better services. . .” The primary cause of death of that girl, and too many others like her, was not lack of services. To either say or imply so is the saddest of distortions — and such sentiments helps shift responsibility for these acts away from those who perpetrate them. An abstract concept about levels of service did not put a plastic bag over the head of little Katie to smother her — a real human being did so.

I wrote at the top if this post that aside from the sadness, I feel anger. I’m trying to temper that down but I am angry with the immediate association my mind made when I heard about Katharine’s death.

On 9th may, Autism Speaks, an organisation that has no autistic members at board level, released a short film called ‘Autism Every Day’. If you want to view it, you’ll have to google it as I’m certainly not going to link to it.

This video has to be seen in its proper context. Its a fundraiser. Its a way of soliciting money from people via pity and tragedy. Having watched the film I was struck by several things.

The film is entirely negative about autism. The opening scenes consist of autistic kids having meltdowns. No one seems to be addressing the fact that autistic kids are susceptible to changes in routine and that hence the cameras and crew are probably deeply unsettling.

At one point in the film, a young autistic girl a couple of years older than my daughter tries to retreat the refuge of her room. The director takes it upon himself to get a camera to follow her. The result is both predictable and probably considered great footage.

The editor seems to believe that no men are concerned about autism. I spotted two Dads (I presume they were Dads). The vast majority of the film interviewed women. I guess its easier to solicit money when you can create the belief that the autism community is parented mainly by single mothers.

The most chilling part of the film came when one of the mothers talked about how she had considered killing herself and her autistic daughter. She related this whilst her daughter was in the room. She concluded this segment by saying that the only reason she didn’t do it was her NT child.

This film was released on May 9th and consequently shown on the US nationally broadcast Don Imus show. Katherine McCarron was murdered by her mum on the 13th.

No one is claiming parenting children is easy. It is not. No one is claiming that parenting children with special needs is easy. Its not. But at some point we have to say to ourselves – yeah OK, this is hard. We have it harder than parents of NT kids…..so what?

Moving past and getting on is as easy or as hard as you want to make it. I don’t want pity. I don’t want sympathy. What I want is understanding. Genuine comprehension. Cynically manipulative pieces like ‘Autism Every Day’ will not aid comprehension. It does not show reality. It shows the bad things. A lot of the bad things in this piece seemed induced either purposefully or by ignorance. I am not saying bad things don’t happen, I am saying they are _far_ from the whole story.

Katherine didn’t live long enough to live in acceptance. Her mother was so intent on autism, she never saw the autistic child. She decided that at three years old Katherine had had her chance and that she, as her mother, was a fit person to judge her undeserving of more life. Autism Speaks? No. ‘Autism’ was never given a chance to speak in this case. Autism’s parent removed that option.

My daughter is three years older than Katherine McCarron was when she died. At three Katherine and Megan were probably very similar. I don’t know if they shared the same interests or not but I hope they did because Meg is one of the happiest children I know. What she does ‘every day’ makes her happy.

I want to share some aspects of Megan’s life with you all – one of the things she likes the most and one of her favourite songs. I want you to see that ‘autism every day’ is not black or white. I want you to see that our children live in a place where their potential is just the same as everyone elses’s. Nobody deserves to die at age three. Especially for the pathetic reason that they happen to be autistic.

As you watch my daughter, please remember Katherine McCarron. I hope she had a favourite song and some days in the sun.

Beautiful Autism – WMV file (Windows Media Player), 30mb download, sound required.

36 Responses to “Katherine ‘Katie’ McCarron”

  1. Tera May 24, 2006 at 00:36 #

    Thank you for this post. I was especially struck by this:

    Autism Speaks? No. ‘Autism’ was never given a chance to speak in this case. Autism’s parent removed that option.

    So true.

    And thank you for sharing Megan with us. She is beautiful. Plus, she has much better taste in music than I did at her age–and I am so jealous of that trampolline set-up! 🙂

  2. alyric May 24, 2006 at 01:32 #

    Hi Kevin

    Great posts abound both here and on ballastexistanz (?sp).

    Who’d a thunk – agreeing with Lenny!! What he said was right on the money.

    Tera’s selected quote is also right on the money. Kudos 🙂

  3. Dave Belson May 24, 2006 at 02:17 #

    Thank you for sharing, your words are both honest and endearing. And “Beautiful Autism” shows a great love and acceptance of a father for his daughter, thanks for posting that as well.

  4. Anne May 24, 2006 at 03:21 #

    Beautiful!

  5. Winnie May 24, 2006 at 05:19 #

    Megan is beautiful…thank you for sharing.

  6. Kassiane May 24, 2006 at 06:03 #

    Thank you for sharing Megan with us. She’s a movie star now.

    I just burst into tears watching, in contrast to all that you hear about autism and the consequences of those misconceptions.

    Beautiful Autism. I concur.

  7. bonni May 24, 2006 at 08:29 #

    I just burst into tears watching

    Me, too. My four-year-old (NT) asked me “Why is the girl jumping and why are you crying?” 🙂

    I can’t comment on Katie’s mother. I read the initial report and the comment that she was always looking for and seeking treatment for her child did raise a red flag for me, but to find out that my suspicion was correct and Mum was into biomed in a big way really turns my stomach.

    How many more children have to be sacrificed needlessly on the altar of “curing autism”?

  8. Nathzn May 24, 2006 at 12:46 #

    I read some of the messages in that link.

    I can see why your angry.

    When that woman jumped off the bridge the media barely mentioned the child, the people interviewed gave their opinions about the mother (all were in pathos).

    Some people are really sick.

    The Biomeds make them look nice.

  9. GMAC May 24, 2006 at 17:24 #

    Such a beautiful child, your family is TRULY blessed. Thanks so much for sharing the video. I felt as though your daughter could see into my soul, telling me we are doing the right thing with my son.
    The McCarron tragedy unfolded a scant hour and a half from my home. It broke my heart to realize that while we were playing in the yard with my son, Dr. McCarron was taking her daughter’s life.
    I will never understand.

  10. Regan May 24, 2006 at 19:02 #

    “As you watch my daughter, please remember Katherine McCarron. I hope she had a favourite song and some days in the sun.”

    I wept. Kevin, you have a beautiful daughter that I hope will always have her favorite songs and many happy days in the sun.
    Thank you for letting us meet Megan.

    Lenny Schaefer: “…The primary cause of death of that girl, and too many others like her, was not lack of services. To either say or imply so is the saddest of distortions—and such sentiments helps shift responsibility for these acts away from those who perpetrate them…”

    I agree with Mr. Schaefer, but I would say that the primary cause of the death of (Katherine) was the belief that there is nothing worse than autism, that it is a nightmare without end, that shining in the distance is a magic potion that will cure it and that the alternative to cure is despair. I worry about people I know who are driving themselves mad leaving no stone unturned, who see “autism” and not the child, and have not achieved some level of acceptance, appreciation and unqualified love for the person in their midst.

    This was a tragedy, and I not only don’t understand, I don’t want to understand. There is no explanation to make Katherine McCarron’s death right.

    Regan

  11. Kev May 24, 2006 at 19:16 #

    I just deleted two comments from JB. I will delete any further comments that run along the same vein. You have a blog JB – use it. Or mail me if you want answers to those questions.

    This thread will have no debate. None at all.

  12. Lisa Randall May 24, 2006 at 20:45 #

    That’s a joyful, beautiful, lucky girl you have there, Kev. Thanks for sharing this lovely little movie.

  13. Matt May 24, 2006 at 23:39 #

    Despite our differences, Megan is as lucky to have you, as you are to have her. And thats lucky.

    All the best.

  14. Ms Clark May 25, 2006 at 00:57 #

    Kev, considering the kind of abuse you’ve taken as a result of sharing parts of your family’s life, it was very good and courageous of you to share the, “Beautiful Autism” video. Thanks of for arranging the Katherine McCarron Memorial Day and day of silence.

    Just now I counted 21 essays from autism-hub bloggers all regarding Katie’s death. More than twenty different perspectives on the same incident, and more than twenty different ways of processing, or attempting to process, the societal implications, and emotional impact of the deliberate killing of a 3 year old by her mother. In my opinion, they were all respectful of the life of Katie and even when written by people in pain, they were written without unnecessary rancor.

    But there IS a place for rage (even for “losing it”) at the abuse of innocent children.

    Some people don’t believe in “rocking the boat,” they want to give themselves the superficial sheen of “neutrality” and portray themselves as being on the moral high-ground by staking out their imaginary “middle ground.” I think they are part of the problem, myself.

    ——————

    “I swore never to be silent whenever and wherever human beings endure suffering and humiliation. We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented.
    Elie Wiesel”

    “Indifference is the essence of inhumanity.”
    — George Bernard Shaw, Anglo-Irish dramatist and wit (1856-1950)

    “Man’s basic vice, the source of all his evils, is the act of unfocusing his mind, the suspension of his consciousness, which is not blindness, but the refusal to see, not ignorance, but the refusal to know.”
    — Ayn Rand, Russian/American author and philosopher (1905-1982)

    “Most of one’s life. . . is one prolonged effort to prevent oneself thinking.”
    — Aldous Huxley, English novelist (1894-1963)

    “It is difficult to get a man to understand something when his salary depends upon his not understanding it.”
    — Upton Sinclair, American author and politician (1878-1968)

    “Necessity is an interpretation, not a fact.”
    — Friedrich Nietzsche, German philosopher (1844-1900)

  15. Liz May 25, 2006 at 01:14 #

    Thank you for sharing this time with your family with us. I hope this will get wide distribution. Joy shines through her body as she is bouncing, and trust in her eyes as she looks at the camera.

  16. Ms Clark May 25, 2006 at 02:01 #

    I just saw what you did with the hub.

    Thank you, again.

  17. Gabesmom May 25, 2006 at 05:54 #

    Is this a trend, or are these type of stories receiving more media coverage lately? I hope it is the latter case. Unfortunately, our local news reported another tragic case of parents taking the life of their autistic son two or three days ago. In this case, the boy was 19 years old, and his parents set fire to his basement apartment and locked the door, preventing his escape. Senseless, useless- the greatest betrayal of all time. By what right to parents assume the role of God, deciding which children are worthy of life and which are to be denied? What remarkable gift of foresight allows these parents to see their child’s future and proclaim it unsatisfactory? I have one word for any parent who feels he/she is incapable of raising any child, NT or special needs- adoption. There are many other people in this world that consider these children to be a gift and would gladly open their homes and their hearts to them.

  18. David N. Andrews BA-status, PgCertSpEd (pending) May 25, 2006 at 10:16 #

    This topic was quite a hard one to read about.

    It’s hard to write about. Yet again, another child’s life is snuffed out because a parent wanted to change the basic nature of her child, rather than to provide educational and developmental opportunities (as I am led to believe this girl’s dad was trying to do)… I have to wonder what the mother thought she was doing, but I refuse to speculate without further data and I’m not the psychologist who’ll have done the forensic examinations of her. Seems to me… oh I don’t know anymore…..

    I’m going to lie down now.

  19. David N. Andrews BA-status, PgCertSpEd (pending) May 25, 2006 at 10:54 #

    Gabesmom: “Is this a trend, or are these type of stories receiving more media coverage lately? I hope it is the latter case.”

    I hope it is the latter too, but I do fear, with the sort of misinformation about autism that goes around these days, that it will turn out to be the former. And that sickens me, as the parent of an autistic child and as an autistic myself. I won’t even go into my feelings (as a professional, myself) towards the professionals who fail to keep abreast of increases in knowledge and understanding of autism

    Gabesmom: “Unfortunately, our local news reported another tragic case of parents taking the life of their autistic son two or three days ago. In this case, the boy was 19 years old, and his parents set fire to his basement apartment and locked the door, preventing his escape. Senseless, useless- the greatest betrayal of all time.”

    Can’t exactly call that a mercy-killing, either, can we? In the case of Katie, suffocating to death is a frightening way to die. In the lad’s case, well… yeh… asphyxiation is a frightening way to die. In both of these cases, death coming after a time of not being able to breathe… actually quite a revolting and sickening thought, really… and for what reason….? Because the children concerned were autistic?!

    I’m not accepting that. It’s because the parents concerned did not want their autistic children.

    Gabesmom: “By what right to parents assume the role of God, deciding which children are worthy of life and which are to be denied? What remarkable gift of foresight allows these parents to see their child’s future and proclaim it unsatisfactory? ”

    I don’t know, I really don’t know… but I’m glad mine didn’t do that.

  20. barefoot_boo May 25, 2006 at 11:31 #

    A happy little girl playing in the sunshine – what could possibly be more beautiful? 🙂 You’re a lucky man Kev to have such a precious little poppet to share your life with. 🙂

    It really is heartbreakingly sad that some folk see autism first and the person second.

  21. María Luján May 25, 2006 at 13:21 #

    Hi

    I have been reading several posts about Katie Mc Carron and many of the things that were posted made me think (or react). Yours was very very important, sensitive and considered. Thank you for sharing your family´s video with us.

    Leaving appart any post with the intention (noticed or not) of using this family tragedy to make a point about a personal belief, I consider many important issues are being discussed.

    Mothering (or Fathering, there is no difference about how we love our children for me, perhaps is different how we demonstrate, but both loves are extremely deep) is not easy. But is one of the most extraordinaire experiences in life. The sense of trascendence and the importance of our attitudes and feelings and actions related to our children is far far beyond give them birth or life. It is related to the most profound sense of what a human being is: our power to give , to nurture, to demonstrate and to teach about love. To teach about love with the example is our most important role. This does not imply an improductive love, but a productive one, considering parenting as a job a responsibility a journey and a blessing. It implies for me the ability to see the person your son/daughter is, how to reach his/her soul, how to teach about all the important things that I was teached about: responsibility, ethics, respect for others and again, love.

    Being a parent of a special needs child is even harder. But all the same remains and in a final reading is our mission to find the way to reach our children´s soul, that is waiting-because our children are always waiting for us in their souls- for OUR LOVE, understanding and true guidance based not in laissez faire but in the responsibility and the incredible journey that is the care of a human life given to you to care, to nurture, to educate and to give the tools to have a happy life as much as you can.

    I have been very concerned about decissions on medical treatments and education about my son. I have been very concerned about respecting him as a human being in his own right. BUT these are not essential things to our relationship. He is not defined by them or our relation is not defined by the fact that he is autistic.

    Our relation is defined by the fact that he is my son. And beyond any public problem related to the things beyond my house´s door ( doctors, educations, support ) the private aspects related to my (our) attitude to him is what is the difference. This is what will do a difference about if I fail him or not. Loving him every day, to let him know every day as much as we can in our gestures, our actions and our approaches that we love him because he exists is what is important to me. In this sense, I feel that I will never fail him.

    I remember 2 cases in my country about non-born children and medical problems. My country does not allow abortion by law. One family was told that their child was anencefalic- with 5 months pregnant. The parents went to court and they asked for abortion because of mother´s emotional suffering. And they won.A lot of debate was related to this case.
    Another family had the same tragedy and they knew by 5 month pregnancy. They choose to go to the end and the child was born naturally. The mom with the same suffering and the same perspective (life is not possible in these cases, the child will die with no hope) chooses to give the baby the possibility to feel love. And the baby died in her arms, with his husband around. For me , this is LOVE , human mother love, in its most pure expression. To leave your feelings behind, your suffering behind, your expectations behind, your negativism or your emotional status behind and to put in front YOUR CHILD´s DIGNITY, Your child´s right to live, your child´s right to be loved to be nurtured to be respected and to be considered of all your efforts and all your fights for consideration. And much more if he/she is disabled. Because the only advocates our children can have , the best prepared must be us.

    This is why I can not understand Katie´s mom (or forgive). It is our mission to take care of our children, it is our responsibility and our sense of being to give them what they need emotionally and spiritually, whatever the way they are packaged and much more if they are not perfect because they depends so much on us..
    I hope that Katie had also sun days and a preferred song. I hope she knew laugh.
    There is no worst treason imaginable for me than she suffered.

    María Luján

  22. Victoria May 25, 2006 at 13:54 #

    She loved to be held… she loved Veggie Tales… she smiled the biggest toothy grin and had pet names for certain people… She was called “Baby Katie”… Her tiny physical presence was a force with which to be reckoned… and her absence is now a devastation not likely to ever diminish…

    Thank you for your outrage… She is loved in North Carolina and missed with a passion that no words will comprehend!

  23. Bonnie Ventura May 25, 2006 at 14:24 #

    Thank you for this, Kev. I hope you will keep some sort of memorial on the Hub when it reopens, with links to all of the posts written on this sad occasion.

    May I place a link to “Beautiful Autism” on Aspergian Pride?

  24. David N. Andrews BA-status, PgCertSpEd (pending) May 25, 2006 at 14:44 #

    María: “There is no worst treason imaginable for me than she suffered.”

    Thanks for putting so well what I wanted to say but was too lost for words to say.

    Victoria: “Thank you for your outrage… She is loved in North Carolina and missed with a passion that no words will comprehend!”

    Thanks for your post, and the detail it contained. As for the above… I just wish nobody had to miss her that much.

  25. withheld May 25, 2006 at 15:43 #

    Katie was a beatiful child that loved the hokie pokie and songs about pickles on her pizza. She had a huge fan base and pleny of hugs in NC. Her father wanted nothing but the best for her. We will miss her more than words can express.

  26. Rose May 26, 2006 at 18:04 #

    Loved the video, your daughter IS beautiful. I would love to see a spot on t.v. about it, aired against some others we are aware of. It would be very powerful…my favorite word this week!

    Thanks.

  27. bonni May 26, 2006 at 19:37 #

    Don’t blame autism for the death of Katherine McCarron, says her paternal grandfather.

    “I am positively revolted when I read quotes that would imply any degree of understanding or hint at condoning the taking of my granddaughter’s life,” says Michael McCarron, 62, of Indianapolis. ” … I’m dealing with a very straight-forward murder case.

    http://www.pjstar.com/stories/052406/PHI_B9TC9LDB.033.shtml

  28. (Re)Becca May 26, 2006 at 23:03 #

    I cried when I read your post and I cried again watching Megan bounce.

    I wish all kids – especially autistic ones but actually all – had parents as full of love and acceptance and caring as you.

    Society needs to stop making it OK for parents to kill their children. Ever. Full stop.

  29. David N. Andrews BA-status, PgCertSpEd (pending) May 27, 2006 at 00:54 #

    Becca: “Society needs to stop making it OK for parents to kill their children. Ever. Full stop.”

    Until politicians act on this issue (and they never fucking will!), it will always be permissible to kill the outgrouped individual with little of no penalty.

    To be honest, until politicians actively protect our interests in our national and regional parliaments, autistic and other outgrouped people are going to be fucked.

    At this point, the permissibility of murdering autistics is a political issue. Not a psychological one. Not a medical one. It is purely a political issue and politicians have to act.

    NOW!

    This is my challenge to politicians to act to safeguard the welfare of autistics… as autistics state it.

    Not one politician will act, I am sure.

    Because they’d lose votes, and that pays their wages. One politician is what I want – to sign here stating (properly and on the record) that what happened to Katie was murder and was completely inexcusable.

    I can guarantee that no politician will state this on the record.

    Chickens, the fucking lot of them.

  30. Gabesmom May 27, 2006 at 06:47 #

    David Andrews said:
    “Until politicians act on this issue (and they never fucking will!), it will always be permissible to kill the outgrouped individual with little of no penalty.”

    Unfortunately, I tend to agree, and it seems that the lives of children in general are worth less than those of adults. If children were truly valued, those who molest, abuse, and murder them would find a one way ticket to either prison or the gas chamber. This has never happened, and a bill known as “Jessica’s Law”(in honor of a Florida girl murdered at the hands of a repeat sex offender) which has been introduced in states across the U.S. has failed to pass or has been withdrawn from consideration in some is indicative of this sad truth. It is the rights of the adults (the “normal” voting adults) that are far more important to the politicians than the rights of their most helpless victims. And you’re right- they are a pack of sniveling cowards who would place their own political ambitions over the lives of innocent children. It disgusts me.

  31. HN May 27, 2006 at 06:56 #

    Slightly less than three years before my son was born, another little boy baby came into this world.

    In his own way he created joy in his family. One of those ways was to win a Three-Minute Film contest sponsored by our local newspaper.

    But as it turned out… he had a serious health issue that cut his life short. Please watch his winning video… and if you can stand it, try the one he was creating before his death, and the tribute to his life afterwards (accessible by clicking “NEXT”):
    http://www.jmichaelarts.com/revenant.htm

    No, this does not have anything to do with autism. It is about children whose lives are cut too short.

    My son has a severe genetic heart condition which often only diagnosed after a symptom of “sudden cardiac death”. We are very fortunate that a heart murmur discovered during a regular “well child” exam for a routine tetanus vaccine was the reason for an echo-cardiogram to get the initial diagnosis… and then the referral to a cardiologist BEFORE the typical first symptom!

    Kev, thank you for the video of your smiling daughter. I hope you appreciate “Relevant”

  32. Renee May 29, 2006 at 09:10 #

    I just looked in on my beautiful son with tears in my eyes. My heart breaks for a little girl called “Katie” who was not much older than he. My son is 21 months old and was diagnosed with autism this month. I say he’s “labeled, but not defined”. He’s my miracle child – every day is one miracle after another. I can’t wait to see what he’ll do each and every day. I am sad for a family missing their little miracle child due to a terrible act by a mother.

    Kevin, your video, “Beautiful Autism” was wonderful and in perfect taste. Your daughter is precious.

    Autism Speaks may have made a poor choice publicizing the “Autism Every Day” video. As a newbie to the autism community I was taken back by the video, but not derailed by it. I’m not one to speculate that the recent murders were directly linked to that video. I simply believe the video may have been in poor taste.

    Despite the video by Autism Speaks, I am grateful to the organization. It was from their website I learned about autism. It was their website who did such a fantastic job listing the signs to look for. It was from their website that I learned I had a local autism center. It was through that center I learned my son did have autism – and through educational resources recommended by that center I have begun to learn how to connect with my son. He doesn’t speak. He is learning to sign. He didn’t look at me before. Now, with prompting, he looks me straight in the eye and is so proud of his ability to connect with me. His laughter is contagious. I’ve learned I can reach and teach my son through swinging. We bought a swing set. The joy I now see in his face was worth the price – ten-fold. I may not particularly like a video Autism Speaks put out on the web, but I am grateful to Autism Speaks for playing an important role in helping me learn how to connect with my son.

    Autism – it’s not about how my son communicates with me, but rather about how I communicate with my son. I learned this one day after I fed him his usual portion for lunch (two containers of Gerber “toddler” food) and took him out of his high chair. He stomped his feet and signed “more”. I looked at him and said “You want more? More what?”. He signed “eat more”. I put him back in his high chair, gave him another bowl full. He ate it all – every bite. Then he was happy. I should have let my child eat until he stopped eating – but I didn’t. I let pre-defined “servings” get in my way. Now, I know to let him guide me when he’s no longer hungry. He and I speak different languages. His language is beautiful – and I look forward to learning it.

  33. David N. Andrews BA-status, PgCertSpEd (pending) May 29, 2006 at 10:37 #

    Renee: “Autism – it’s not about how my son communicates with me, but rather about how I communicate with my son.”

    Yep… many people actually fail to realise that, if autism is (at least, in part) a communication problem, that – because it takes two to communicate – then it is not the autistic person who is the ‘site’ of the communication problem, but the *interaction* between the two people communicating. For this, well done on being open enough to figure this one out. The JRC (see Kev’s other thread) is full of children whose parents don’t yet seem to have picked up on this.

    “I learned this one day after I fed him his usual portion for lunch (two containers of Gerber ‘toddler’ food) and took him out of his high chair. He stomped his feet and signed ‘more’. I looked at him and said ‘You want more? More what?’. He signed ‘eat more’.”

    Oooh, very good…. I did this with my daughter (who is autistic and bilingual – Finnish and English), and – even though you’re wanting more verbal output from the child than s/he is giving – you stay happy with limited output as long as it is more ‘specifying’ than the previous utterances… this is in line with Vygotsky’s work in the early 20th century, which had the child working within his/her Zone of Proximal Development. You elicit performance of a task slightly harder than the child can do already without help, but not too hard for him/her to accomplish with a little help.

    “I put him back in his high chair, gave him another bowl full. He ate it all – every bite. Then he was happy. I should have let my child eat until he stopped eating – but I didn’t. I let pre-defined ‘servings’ get in my way.”

    I am pleased to see this being said… it isn’t said enough. Many parents are ‘always right’ with their insistences that the child will learn or do things in the way in which the parent defines the process… and the fact is that the child learns/does things his/her own way, and it is incumbent upon the parent to adapt his/her teaching/instruction methods to the learning/doing style of the child, autistic or otherwise. I remember seeing a documentary on Richard Feynman (physicist) and hearing how he had to modify his teaching of science to suit the way in which either of his two children preferred to do things… for his son, he made adventure stories; and, for his daughter, he stuck to presenting the facts (having found that she didn’t like the stories approach). Nice to think that one is on a par with one of the greatest physicists in the world, isn’t it? 🙂

    “Now, I know to let him guide me when he’s no longer hungry. He and I speak different languages. His language is beautiful – and I look forward to learning it.”

    Now I’m tempted to go off and have a cry (that last sentence is quite touching, but I’ve been a bit emotional of late… dunno why: I’m autistic, so I’m not supposed to have these issues – yeh, right!) but I won’t…. I’ll leave you with this:

    You’re the kind of parent I wish I had coming to my courses … but you’re the type of parent who maybe doesn’t need them that much, since much of what I deal with is learning to do what you are in fact doing… listening to your child and learning his way of being.

    Makes me feel good to see that happening. There is not an autistic child on the planet who does not develop (despite the horror stories one hears from certain catastrophising autism sites), and I think that you’ll see good developmental progress because of the way you facilitate your son’s development. Lovely to read about, and no doubt even lovelier to see.

  34. Renee June 5, 2006 at 08:53 #

    David, thank you for your kind words. I invite you to visit my blog that I call the “Language of Autism”. (http://languageofautism.blogspot.com/) All the best to you.

  35. Jane June 12, 2006 at 04:06 #

    What a video. What a kid. My neighbor has two autistic kids. The younger child cannot talk at all or walk very well. He has no concept about our reality. However, when he sees me he goes crazy. His blue eyes shoot sparks through me and his smile covers his whole face. His purpose in life – to make me feel great and he’s good at it. When I’m in need of some true lovin I just have to walk across the street. His Mom knows how special he is to all of us. She wouldn’t trade him in for anything. He does have a reason for being alive and there are a bunch of us who are grateful he’s here.

    Thanks for sharing your story. Your daughter is beautiful and happy which makes me happy.

  36. David N. Andrews BA-status, PgCertSpEd (pending) June 17, 2006 at 02:13 #

    Renee… I visited 🙂

    I’ll check again when my work-rush is done.

Comments are closed.

%d bloggers like this: