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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Wednesday, March 01, 2006

 

The Lonliness, The Struggle, and The Profound Joy of Autism

For the past couple of days I've been very sad. Sadness for me often turns into agitation. Agitation a sign that there is change going on from within. Talking about autism is like talking about religion and trying to say one is more "right" than the other. The tone of the dialogue is depressing me these days as I look upon my son's sweet cherub face (it really is, he carries all his weight in his cheeks while his pants keep falling off), as I wake every morning to watch him open his eyes and smile at me, each day more shiny and new for him as it should be for all of us, and at night when he cradles himself in his bed in the crook of my arm and falls asleep -- a sweetness so joyous and a dialogue so painful, it is making me bawl.

Then, I turn on CBC Radio One and Ellen Schwartz of Jacob's Ladder is speaking. Ellen happens to be the sister-in-law to one of Adam's therapists, Bianca. Ellen's eight-year-old son Jacob has Canavan's disease and was never expected to live -- he is not expected to live past his tenth birthday. Their lives are challenging at best -- taking 45 minutes to leave the house for any family outing as Jacob requires medications, air tanks, and more. Ellen makes me bawl some more in the car as I am about to view my son's art show at school. I feel ridiculous -- eyes red and puffy, I have to wear my Jackie Kennedy sunglasses and take a time-out to grab a vanilla soy latte to warm myself in Toronto's recent frigid air.

I get back in the car quickly to catch more of her interview. She and her husband have developed a screening program so that carriers of this disease can be informed before they make a choice to have a child. She says, "why would I want to bring a child into the world who I know will suffer and then die?" She acknowledges that the ethical issue is different for all people, but she wants them to have a choice. By the same token, through all of her family's suffering, she acknowledges how Jacob is a gift for her. She talks about how her heart will unexpectantly turn sad as she watches his cousins playing while he is confined to a cot. I erupt again thinking of Adam's ten cousins running around on socializing on Shabbat, his same-aged cousin Annie so swift and talkative -- he just can't keep up with her. While Ellen accepts and loves Jacob with all her heart, she acknowledges the struggle with the disease, the hard life of Jacob, of acceptance and sadness mixed with her profound love.

We all have opinions about what is best for our children. We all have different "religions" so to speak. I am not very tolerant of evangelism -- I must be honest with my bias' -- but I believe that everyone has a right to express themselves, to discover their views, to evolve. This, for me, is what blogging was in part about. It was intended, for me, to be an exploration of views, "lenses to try on" as I stated in my profile, to hopefully develop and grow. Some people take these debates, points of view, so personally (a hazard of religion as it involves so much emotion), that I have discovered a very dark side of autism. I discovered that parents with autistic children are so divided that the support I was seeking is hard to find. Instead of a journey to discovery, it is starting to look more like a war out there. I want to agree with Susan's post today that we have to have a gentler approach. I am thinking about "celebrating difference" as I have through the art shows I've done so far, the lectures I've organized, the floating wall of quotes from people with autism that spoke more loudly than the words themselves.

So for me I suppose this is my best "reprieve," other than my own thoughts and words -- there is still no friend who truly understands, no fellow parent of an autistic child who doesn't have an alternate "politik." I struggle to find that middle ground -- that ground where parents can feel safe to state their struggle, to express their opinions, to be allowed to take care of themselves (I've gained about ten extra pounds of "armour" since Adam's diagnosis but am now allowing myself some time to work it off), to even be accepted by the autistic community for this evolutionary process. To be accepted as equals, sometimes we have to express empathy for others. I am left wondering if this is an ideal, if this type of reparte can be achieved.

In looking to history, we can learn about ourselves by understanding what is at the root of our beliefs. It deconstructs them, and I think that is a very healthy undertaking. When we think we believe something, we quickly learn that the belief does not really belong to us. We are not the authors of our own destinies, really. We are not free-thinkers, truthfully. We inherit so many ways of thinking -- we can not claim our thoughts as our own. When we take a look at our own beliefs in this way, I think we can grow more tolerance for each other.

Adam's OT reads my blog. She was mentioning how sensitive even "celebrating" autism is for some families -- she knows of an autistic girl who poked her eyes so many times that she has now blinded herself. For some families, she reminds me in my quest for acceptance and celebration of difference, this "enlightenment," this belief, is pretty difficult to muster. I am not sure how to address this, and by no means do I want to undermine the struggle of some families out there. It is not my right to shove "celebrate" in front of their faces when they just do not feel like celebrating.

Ellen's dialogue today reminded me of something I've said to myself before: joy does not come without struggle, it doesn't come for free. I've found joy only through my journey with Adam. I too thank God for him every day. He has brought so much purpose to my life, and I am grateful for all that I am learning because of him. My joy and my sadness are always intertwined which is why Ellen's interview struck a chord with me today. In the struggle to find the black and the white, I find nothing. In the acknowledgement of the rainbow, there lives everything. As I cry a little more, the sun comes out. It is frigid out there, but at least the light brightens my outlook.

12 Comments:

Blogger Lisa/Jedi said...

estee,
I share many of your views & get a lot of information & support from reading your blog. My husband & I, too, feel that there are many things to celebrate about our son with AS & would not change him lest we lose what makes him uniquely him. B's diagnosis was daunting at first, but when we understood how important it was to help him find reasons to feel good about himself- for the sake of his self-esteem- it became easier & easier to do so. He has many challenges, but is extremely bright & very charming (when he wants to be, of course). This, I think, is the sticking-point with sharing our philosophy of celebrating our kids' differences. My AS kid can go to school, has friends, has a realistic hope of going to college, & may even live independantly when he grows up (no guarantees...). I have met families with kids who do not have this outlook & can empathise with their wish to "cure" their kids, even though that's not what I want for mine. In a way, although all of our kids are autistic, there really is no comparison to our situations. Adding the diversity of expectations for our lives & depths of pain/inconvenience caused by having autistic kids makes finding common ground even more difficult (I have certainly experienced this in my encounters with other parents of autistic kids). I wish that we could all at least agree to disagree. Perhaps we who advocate for a society that's kinder & more accepting to our kids by celebrating our kids' differences will change things enough that all families will benefit from our efforts. It may sound Pollyanna, but it's my best hope for common ground in this difficult, ongoing conversation. Keep the great thoughts coming! :)

5:49 PM  
Blogger Kristina Chew said...

I take a lot of joy in the cold and heat of autism---one richly colored, big and messy, vibrant world.

8:54 PM  
Blogger Stephanie said...

It's a delicate balance: accepting your child as he/she is while still looking to how you can improve the quality of his/her life.

When my oldest son was first diagnosed, all I found on autism was the search to cure it. Every support network I found had that as the goal. I couldn't accept that, and so I went without "outside" support. My husband and I did what we could for our children: loving them, accepting them and seeking treatment to help them without any desire to "cure" them. Until I started looking on the net for blogs about autism I really didn't know there were others out there who didn't think autism needed to be irradicated and cured.

Estee, you are the first blogger I found who seems to share in my search to find the balance between acceptance and assistance and I thank you very much for that. That's not to say we agree completely with each other, but we all have our own unique perspectives, however the were generated, that influences us. Personally, I would find someone who totally agreed with me on everything very boring...one of me is enough.

11:10 PM  
Blogger Stephanie said...

BTW, I added you to my links list too!
:-)

11:13 PM  
Blogger SquareGirl said...

Estee, Once again, I feel that you reached right into my heart and mind, extracted my thoughts and expressed them far more eloquently than I could have ever imagined. The "war" is one of the reasons I hold back my own thoughts on autism so often. It is also one of the reasons I am not a part of the "autism community" and have even been criticized by it even though I myself have had to deal with the autism diagnosis and all the other suffering that comes with it for my entire life. I have finally reached the point where I can be amused by the irony of being suffering and ridiculed, for not being "neurotypical", and now am discounted by the autism community. It has hurt me too...yet the tragic consolation is that I have learned to reject rejection. When I see how you find the joy in autism, I feel at home and accepted for who I am, even though we have never met. Thank you for this lovely post.

12:11 AM  
Blogger Zilari said...

As usual, a very insightful and lovely post. As I've started writing myself about issues pertaining to varying neurology, one thing that I always am pained to see is conflict...especially when the conflict turns out to be over word choice or something like that.

I also struggle with wanting to accept myself, and wanting acceptance for others like me, and knowing what to say when parents discuss how their child is seriously injuring him or herself. I think part of the key here is to realize that "behaviors" ARE NOT "autism". Any child can have a "behavior". Many neurotypical teenagers, for instance, self-injure, become depressed, commit suicide, etc. However, this is not *because* they are neurotypical (whatever that may mean) but because there are stressors in their lives and minds that have become unbearable for one reason or another.

It is my hope that in the course of human development, we will learn to identify, mitigate, and alleviate stress in people of all patterns of consciousness and ability sets. This means finding out WHY certain people do certain things, helping them deal with bad feelings, providing people with every opportunity to learn to communicate in a constructive manner, etc. This has nothing to do with "autistic" or "non-autistic" so much as it has to do with human beings and human variety and human love. Thank you for loving your son and finding joy in him, because this sort of love is one of the very things that seems likely to lead to greater understanding of all sorts of people and their diverse needs.

Hopefully this makes sense.

2:33 AM  
Blogger abfh said...

Yes, the tone of the dialogue is often depressing, but at least we are having a dialogue now, which is a considerable improvement over the previous state of affairs.

May we all have brighter days.

8:25 AM  
Blogger Eileen said...

I also find some of the tone and dialogue among some blogs to be depressing. No, I do not seek a "cure" for my son's Autism. Yes, I accept him for who he is. Yes, I will continue to help him with his struggles as much as I can. I find joy in both of my sons. They both possess amazing qualities that are unique to them. My husband and I embrace their uniqueness.

9:23 AM  
Blogger Christine said...

Estee, What a lovely post. My family's journey with Autism only started 7 months ago and we have all come so far since then. I *know* I wouldn't have healed so much as I have if I hadn't discovered the writings of other autism parents. Yes, there is a lot of division out there but I find that by examining such radically different views I have been able to better frame my own understanding of autism and what it means for my boy and for my family. Not only am I healing, I am growing. I've also come to believe that *Humanity* is a spectrum -- which is a valuable lesson, indeed.

9:25 AM  
Anonymous mike stanton said...

a lovely post.

We can accept autism as a way of being while challenging a world that is hostile to that way of being. We can give the autistic people in our lives all the help and advice we have on how to cope with that hostile world. We can try and fix the additional challenges that sometimes coexist with autism. And, above all, we can seek ways of achieving dialogue with autistic people and respecting their wishes if possible.

7:47 PM  
Anonymous Lisa said...

I highly recommend the book "The Spirit Catches You and You Fall Down" which is the story of a young girl with epilepsy. The book deals with issues of how we define illness, quality of life, adequate treatment, etc. according to our cultural beliefs and practices. Many cultures don't tolerate disability of any kind, but some consider it to be part of human nature and are able to see what is special and, more to the point, human about those in their midst who are a bit "different".

Maybe it's because we are so obsessed with success that we have a hard time appreciating what is joyful and worthy in any life, even one that is painful. Westerners have an aversion to difficulty and pain, to the point where we can't understand why someone would "want" to suffer - which is odd, considering that suffering was once taken to be noble and spiritually uplifting in Western religious traditions. I personally found a lot of value in a spiritual path that teaches that we don't have to "do" or "be" anything special in order to fulfill our life's work - that just sitting and breathing, or whatever you're doing, is "enough". Being 100% engaged with life, whatever life might look like, is doing life's work. This perspective says that life is worthy when you're imprisoned or oppressed, when you're ill or dying, when you're shunned or beloved or misunderstood.

And it has always struck me as foolish to write someone off as "damaged" when I've personally worked with kids who have defied the odds. I look at Helen Keller, Stephen Hawking, Temple Grandin, and other notable examples of folks with one difference or another who've been able to rise up, and the common thread I see is that these are people who fully engage with life and somewhere along the way had people believe in them at a critical time in their development. As long as our kids have that, who knows what could happen. Not that our kids need to be physicists or PhDs - they already are who they are. Just like the rest of us.

9:00 PM  
Anonymous Anonymous said...

Before my son was diagnosed with Autism, a lady had approached me at a grand opening for one of our local supermarkets. She asked me if I knew about Crystal children, placed her hand on his head (this did not bother me, she was a peaceful woman) and said that Aidan was a Crystal child. She proceeded to ask me if I was a spiritual person, and indeed I am, but I do not know to quite what extent. I proceeded to read up on these "Crystal Children" as Aidan was only 6 months old at the time.
At one year, and not one word from his mouth, not even "mama" I took him to see his Developmental Pediatrician. I find peace in the different ways that Autism can be viewed, and celebrate the gifts that come to our table at home each day, a new word can be a gift,
locking eyes with my son for a moment longer than expected, a spontaneous kiss or hug. The repetition that comes with always going for a car ride, or going to the car wash just because he mustered up the sentence to ask for it and the reward is just that.
I have a very clean car by the way.
I wouldn't trade these gifts for anything. I feel that Autistic children have a greater purpose on this earth. They are here to teach us something, I feel my son was destined for something more and I am sure that many mothers of autistic children believe that their children have a purpose that is far beyond our understanding at this time. I am open to evolve with my son, perhaps his need to talk sentences is not at the top of his list at this time. There are more important things to accomplish. No sense in trying to fit him into this world when I can happily share in his. Heck, I may even learn something new!

3:46 AM  

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