As the parent of a child with special needs, I was told early on that having a special needs child would involve a grieving process. The dreams my wife and I had for our son would need to die and that it would feel like the death of a family member.
A few years ago, someone sent me this article, an adaptation of a speech by an adult autistic man named Jim Sinclair. I read a portion of it yesterday publicly and was asked by many people to send them the link so I thought I’d re-post it.
It’s a window into the lives of parents of children with special needs and those children themselves. It’s also a cup of cold water in the face of us who are the parents of those children. Thank you Jim Sinclair for helping us see what was so hard to see. Here’s the whole article:
DON’T MOURN FOR US by Jim Sinclair
[This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. It is an outline of the presentation Jim gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]
Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child’s and family’s life cycle.
But this grief does not stem from the child’s autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents’ attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child’s actual development, cause more stress and anguish than the practical complexities of life with an autistic person.
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. 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. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.
I invite you to look at our autism, and look at your grief, from our perspective:
Autism is not an appendage
Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person–and if it were possible, the person you’d have left would not be the same person you started with.
This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say,
I wish my child did not have autism,
what they’re really saying is,
I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
Autism is not an impenetrable wall.
You try to relate to your autistic child, and the child doesn’t respond. He doesn’t see you; you can’t reach her; there’s no getting through. That’s the hardest thing to deal with, isn’t it? The only thing is, it isn’t true.
Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn’t respond in any way you can recognize as being part of that system.
That does not mean the child is incapable of relating at all. It only means you’re assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It’s as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won’t understand what you’re talking about, won’t respond in the way you expect, and may well find the whole interaction confusing and unpleasant.
It takes more work to communicate with someone whose native language isn’t the same as yours. And autism goes deeper than language and culture; autistic people are “foreigners” in any society. You’re going to have to give up your assumptions about shared meanings. You’re going to have to learn to back up to levels more basic than you’ve probably thought about before, to translate, and to check to make sure your translations are understood. You’re going to have to give up the certainty that comes of being on your own familiar territory, of knowing you’re in charge, and let your child teach you a little of her language, guide you a little way into his world.
And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career–but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision–but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you’ll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined.
Yes, that takes more work than relating to a non-autistic person. But it can be done–unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can’t relate.
Autism is not death.
Granted, autism isn’t what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to.
But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives–but it has nothing to do with autism.
What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it–and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn’t happened. It isn’t going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn’t arrive.
This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn’t about autism, it’s about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss–not to forget about it, but to let it be in the past, where the grief doesn’t hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won’t be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at t time the child being mourned for died.
You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence. That isn’t the fault of the autistic child who does exist, and it shouldn’t be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.
This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won’t make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it–and then do something about it. The tragedy is not that we’re here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?
Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: “This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child.” Then go do whatever grieving you have to do–away from the autistic child–and start learning to let go.
After you’ve started that letting go, come back and look at your autistic child again, and say to yourself: “This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it.”
If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.
Jim Sinclair.
http://www.autreat.com/dont_mourn.html
Jeffrey Devoll is an international speaker, author, video blogger and co-creator of 2 children.
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These Adults Were Acting Like Teenagers So We Taught Them A Lesson – Sept 14, 2015
“Why would students sit in a class after sitting all day in class at school?” – Matt James
Matt attended our A.L.I.V.E. Life Coaching seminar this weekend to get that exact question answered. During Session 1 of the A.L.I.V.E. Seminar we were able to bridge the gap between students and adults as we had the adults sit in our week 1 coaching session.
We didn’t change a thing – we spoke to them just the same as our students to help them see exactly what would be experienced and see the level of communication we try to achieve. “We want to be as genuine as possible” said Coach Mason Gizard to his class of adults.
During Session 2, as the attendees moved from participant to coach, it became clear that the curriculum is intended to be much
more of a conversation between the coach and their students then a lecture. “I would rather have a student interrupt me then no one be talking” said Coach Raquel Shipp during training.
The Life Coaching material is intended to keep the facts interesting and the stories applicable. One of the adult leaders blurted out “Oh this is fascinating!” as she was reading through her coaching section in front of the group.
The A.L.I.V.E. seminar was designed to build relationships with administrators, teachers and adult volunteers and hopefully create new Life Coaches. We accomplished this goal through the exact same process we use to build relationships with our students.
Stories were shared, there was lots of laughter, and people became vulnerable which together helped build relationships quickly.
This is why students are willing to come sit in a group, in a circle of chairs even after hours in the classroom. We don’t sit in rows staring at the front; we circle up, engage and build relationships in order to speak truth into the lives of students. Matt and many other adults left the A.L.I.V.E. Seminar with the tools they need to succeed as coaches; just as students leave Life Coaching with the tools they need to succeed in their life and future.
For more information on how you can implement this program at a school in your community contact us today!
9 YEAR OLD IN DISTRESS AND THEY CHOSE TO WALK AWAY
Mark described Ellison saying, “She was so bad she was wonderful, she had a really vulgar mouth, she was brilliant.” Mark added: “I was something of a problem kid. I was emotional, wild, rebellious at school. I’m very touched by kids who don’t have advantages; they are much more interesting than kids who have everything. They have a lot of passion and emotion, such a strong will.” She was so moved by Ellison’s strong will that she made her the focus of her piece. She highlighted, for a moment, this little girl’s story on a national stage.
The rest of Ellison’s story is what you would probably expect. At age 11 she was taken into foster care, lived in group homes for years, became addicted to hardcore drugs at age 16 and ended up incarcerated as an adult. She admits, she is still surrounded by drugs and crazy people to this day.
How is it possible that no one did anything? The truth behind this photo is shocking. It is clear that this little girl is in turmoil. It is clear the trajectory of her life is in a spiral toward disaster. How did no one intervene? Her story was highlighted. National awareness was brought to her situation. The problem was clear. Mary Ellen Mark was moved by this kid that didn’t have advantages but not driven to actually do anything about it. Ellison hoped someone would do something. She said, “When she came along and took those photos, I thought, ‘Well, hey, people will see me and this may get me the attention that I want; it may change things for me,’ ” Ellison says. She thought someone would see the images and come rescue her. “I had thought that that might have been the way out. But it wasn’t.”
Bringing Awareness does not bring change. It does not matter how much we talk about the issues that our youth are facing. Well-meaning, contributing citizens being moved by the plight of disadvantaged kids does nothing if they aren’t moved to action. You can’t go back in time to save this 9 year old but you can do something now to help students just like her…
StudentReach is not just talking about the issues. We are actively reaching into the lives of students just like Ellison and creating opportunities for real change. We are attempting to look past the images our students portray to see the truth in the candid moments they allow us to experience.
We mobilize hundreds of volunteers each year to reach out to the youth of our nation and have a positive impact on their future and ours. Contact us today to find out how you can get involved!
REFUGEES IN THE WOODS – Aug 31, 2015
For years Joseph and his family have been fleeing from the dangers of war. Ethnically Afghan his family has gone from Iran to Turkey and now to Sacramento. He has for the first time in years started school and is now trying to navigate much more than the halls of high school. He is trying to learn English, find friends and enjoy life as a free person.
This past weekend Joseph, his younger brother and a few friends joined StudentReach on a trip to the mountains where we enjoyed the classic American past time of camping.
Hiking, roasting marshmallows, kayaking and swimming filled 2 1\2 days. During our down time we had English lessons designed to provide insight about who everyone was and what they plan to do with their new life in America. Learning about who your fellow campers are is essential to long lasting friendships.
WORKING WITH REFUGEE YOUTH IN SACRAMENTO – Aug 4, 2015
For the past 4 months Adam and I have been able to be a part of the lives of some pretty incredible refugee students. The students who we have had the pleasure of presenting our American Life Coaching program to, are recent arrivals from places such as Turkey and Afghanistan. They all have unique and sometimes tragic stories, but most importantly BIG dreams. Through a Life Coaching program developed by StudentReach, we are able to be a part of turning those dreams into GOALS. Some of our students are striving to get to college, others are learning English and are on their way into the workforce.
StudentReach is an organization that helps students accomplish their goals regardless of the circumstances they may be coming out of or facing. As with all refugees, the students we work with often have stories that would be debilitating to most. Through our life coaching program we are fostering a mindset in our students, of accomplishment and citizenship in their new homeland.
Adam and Raquel Shipp have been working with students for the past 9 years, their work with refugees began 3 years ago. They work with StudentReach and are involved with student mentoring, school assemblies and volunteering abroad.
STUDENTREACH: AMAZON SMILE – Jun 9, 2015
Do you like shopping on Amazon? Did you know if you use Amazon Smile instead of Amazon, they will give a percentage of each sale to StudentReach? The site works exactly the same as Amazon and your login and account info all stay the same.
It is so easy to help our new refugee and homeless life coaching programs and our summer trips to help the homeless in Baja. All you need to do is choose our non-profit. Thank you in advance!
Here is the info:
This is our new AMAZONSMILE link. If people buy through amazon using this link we receive 0.5% of each purchase.
https://smile.amazon.com/ch/80-0100930
A NEW GOAL!!!!!!! – May 5, 2015
We have an awesome opportunity to fund 2 more unique projects.
Our mentoring groups have expanded into refugee and homeless populations this semester and we need about $1000 to fund two leadership wilderness experiences. One of our donors provides the 95 acre ranch for free, we just need to pay for transportation and food for about 15 people each on of these weekends. The cost is roughly $500 each weekend.
Can you help us teach assimilation and life skills for these refugee and homeless students?
LAST DAY OF ASSEMBLIES IN THE CENTRAL VALLEY
After 18 assemblies in 8 schools with over 10,000 students, today ends with Tracy High School.
Thanks to the law enforcement officers, community leaders, volunteers and others that came out to assemblies this week. Thanks to the Administrators, teachers, staff and students – you’re all awesome. Special thanks to the office of Congressman Jeff Denham. We appreciate the support.
#withoutpermission #saysomething #speakup15
THE WONDER YEARS AREN’T SO WONDERFUL – WHAT WE’RE MISSING ABOUT BULLYING
But we’re missing a huge piece of the puzzle. A piece that I almost never talk about even when I address the subject of civility in schools: sibling bullying.
Based on your childhood experience you probably just had one of two reactions. You either just thought, “Here we go, one more thing we have to solve” or, if you’re like me and had my experience growing up, you’re thinking, “Finally, someone is talking about the bigger issue – living with your bully.”
The research is in. Sibling bullying is a problem and it’s a bigger problem that school bullying. There are also implications that bullies on the playground are frequently being bullied at home by older siblings.
That’s my story.
I was a mild to moderate bully in late elementary school and middle school. The reason was 100% the torture I endured at home.
From a young age I was tormented by a brother 2 ½ years old than I. I don’t know if he saw me as a rival or what his reasons were. Maybe we just had normal sibling strife that always resulted in him emerging victorious. Whatever the reasons were (he has repeatedly apologized and I’ve never asked him why he did it), the severity was high. It was daily and frequently physical. And he was good at it. He could involve dozens of other people and no one, not even my friends were immune to joining the team that would abuse if called to duty.
My brother is now a great father and we both talk about teaching our kids to be different than we were. We were both products of acceptable system that shouldn’t have been accepted.
My parents were great parents, but didn’t see what was really happening to me. Even after I tried to kill my brother 3 times around the age of 11, no one seemed to care. I tried to stab him with a butcher’s knife (unsuccessful), push him through a window (successful and bloody) and impale him with a large screwdriver (unsuccessful). All of my relatives and educators thought that he was cool, I was difficult and I either deserved my daily punishment for existing or that sibling rivalry of this nature (which might be more heightened than normal) was to be expected. In my world, he was likable, smart and funny (usually at my expense) and I was awkward, annoying and contentious. No one ever told me even one time that I didn’t deserve the treatment I received. (I remember an aunt one time sitting me down to ask why I was so angry and I told her I wanted my brother dead. She told me that we needed to get along better.) I’m not saying I wasn’t part of the problem, but even conflicts I started were met with disproportionate response.
I’m not saying he didn’t get in trouble sometimes. He did. But, more frequently, we got in trouble or were expected to work it out ourselves. This was the approach used by my parents, educators and relatives. It was what they had learned from the system they grew up in.
The irony is that I was old enough to stand toe-to-toe and fight with him, just not enough to ever win any physical battle–of which there were many. Little blood was shed; it was mostly just cuts and bruises and emotional scars that I carried for decades.
What do we do for those victims of incivility that aren’t our own children? We have to teach them…
Lest you have come to think in this article that I am one of those whiners who calls every unkind word abuse, I’m not. I know the difference between being a jerk, being a bully and being an abuser.
If you think that I am some politically correct pseudo-advocate who wants to elevate every conflict to the highest level and get everyone who has ever experienced a lack of kindness into therapy, you don’t know me.
If you think that I’m looking to turn our students soft, I think we need to teach them to be tougher. And that the ultimate show of that resilience is by not repeating the cycle.
RE-POST OF THE BEST THING I’VE EVER SEEN ON SPECIAL NEEDS
A few years ago, someone sent me this article, an adaptation of a speech by an adult autistic man named Jim Sinclair. I read a portion of it yesterday publicly and was asked by many people to send them the link so I thought I’d re-post it.
It’s a window into the lives of parents of children with special needs and those children themselves. It’s also a cup of cold water in the face of us who are the parents of those children. Thank you Jim Sinclair for helping us see what was so hard to see. Here’s the whole article:
DON’T MOURN FOR US by Jim Sinclair
[This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. It is an outline of the presentation Jim gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]
Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child’s and family’s life cycle.
But this grief does not stem from the child’s autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents’ attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child’s actual development, cause more stress and anguish than the practical complexities of life with an autistic person.
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. 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. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.
I invite you to look at our autism, and look at your grief, from our perspective:
Autism is not an appendage
Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person–and if it were possible, the person you’d have left would not be the same person you started with.
This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say,
I wish my child did not have autism,
what they’re really saying is,
I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
Autism is not an impenetrable wall.
You try to relate to your autistic child, and the child doesn’t respond. He doesn’t see you; you can’t reach her; there’s no getting through. That’s the hardest thing to deal with, isn’t it? The only thing is, it isn’t true.
Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn’t respond in any way you can recognize as being part of that system.
That does not mean the child is incapable of relating at all. It only means you’re assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It’s as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won’t understand what you’re talking about, won’t respond in the way you expect, and may well find the whole interaction confusing and unpleasant.
It takes more work to communicate with someone whose native language isn’t the same as yours. And autism goes deeper than language and culture; autistic people are “foreigners” in any society. You’re going to have to give up your assumptions about shared meanings. You’re going to have to learn to back up to levels more basic than you’ve probably thought about before, to translate, and to check to make sure your translations are understood. You’re going to have to give up the certainty that comes of being on your own familiar territory, of knowing you’re in charge, and let your child teach you a little of her language, guide you a little way into his world.
And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career–but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision–but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you’ll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined.
Yes, that takes more work than relating to a non-autistic person. But it can be done–unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can’t relate.
Autism is not death.
Granted, autism isn’t what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to.
But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives–but it has nothing to do with autism.
What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it–and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn’t happened. It isn’t going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn’t arrive.
This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn’t about autism, it’s about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss–not to forget about it, but to let it be in the past, where the grief doesn’t hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won’t be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at t time the child being mourned for died.
You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence. That isn’t the fault of the autistic child who does exist, and it shouldn’t be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.
This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won’t make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it–and then do something about it. The tragedy is not that we’re here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?
Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: “This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child.” Then go do whatever grieving you have to do–away from the autistic child–and start learning to let go.
After you’ve started that letting go, come back and look at your autistic child again, and say to yourself: “This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it.”
If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.
Jim Sinclair.
http://www.autreat.com/dont_mourn.html
Jeffrey Devoll is an international speaker, author, video blogger and co-creator of 2 children.
follow us on social
DRESSING FOR SUCCESS
So how is it that they look so sharp even when most of them have never had a shower in their entire lives? Self respect. Pride.Dignity.
Plus, they have educators employed by an NGO that is teaching them to dream of a future of success.
They aren’t loosing their tribal identity. Like all Maasi, they have had their middle bottom teeth removed — a long-held ritual for the Maasi. They will still be circumcised at the age of 15 as a part of their tribal identity (a tough but essential tradition of becoming a man). But they are also being taught to value education and respect women and prepare for a changing world.
Part of that preparation is dressing for success. No excuses.
Kinda makes you think . . .