Home > In Their Own Words > In Their Own Words: Ignorance is Not Bliss

In Their Own Words: Ignorance is Not Bliss

As the parent of two children who have autism, I have been their shield and their sword since birth. I protect them from outside influences, which affect their routines and trigger their sensory issues; I fight for services at school; I pay for necessary and expensive medications and therapy and I have totally changed my own lifestyle to accommodate their needs.

The problem is that I don’t know how far to go with all of this.

At some point, my teenage daughter is going to have to face the world without my sword and shield. She’s 14. That’s a far cry from being an adult, but I keep asking myself what I can do now to help her transition into an independent person by the time she goes to college.

How far do I push her and when do I let her fail so that she can learn how to pick up her own pieces?

My daughter has difficulty reading social clues and she takes everything at face value. There is only black and white in her world, no shades of gray.

In other words, she’s “clueless,” which has its advantages for now.

Jessie doesn’t pick up on spoken innuendos and teen body language. If someone said “He’s hot,” she might think the guy had a fever. (Really, I’m serious …)

If I mention boys to Jessie, she adamantly insists that she’s never dating, never getting married and never having kids. She simply cannot envision a future in which she will change her mind on these issues.

As a teen who has autism, Jessie’s physical development is on par with her age, but light years ahead of her social development. Believe me when I say that guys around her see it, even if she doesn’t.

In the back of my mind I keep thinking about the movie Harper Valley PTA, in which the somewhat mousy/shy teenager gets her braces off, gets a new hairstyle and suddenly everyone sees her as “grown up.” Jessie’s almost there. Her early teen acne is clearing up, she just got her braces off and she’s tall and very athletic for her age. Yet, she’s totally clueless and totally dependent on us to make the right choices for her.

I literally have to force Jessie to participate in activities outside our home. She loves soccer, but hates activities with her teammates outside of regular practice and games. The same applies to school and church. Daily and weekly routines such as Sunday school and Wednesday night youth activities are fine, but field trips and special youth activities are outside Jessie’s routine.

This weekend I practically had to force Jessie to pack her bags for the youth lock-in. I will say that I was very proud of her when she explained why she did not want to go: “I feel alone there,” she said.

I could have cried, because I know exactly how she feels, and her comments made me question whether I was making the right choice for her. I did not back down, however, despite the fact that my husband kept telling me not to force Jessie to do something she does not want to do.

This was too important and it was a great opportunity for Jessie to try to socialize in a very protective atmosphere. We have a wonderful church and great youth group and I know Jessie is in good hands when she’s there.

And yes, in the end, Jessie had a really good time. She made a couple of friends and for the third year in a row, she stayed all night, after swearing that she would not.

Still, church activities are not enough. At some point, Jessie is going to have to learn to deal with society outside of the protections of home and church. She should be dealing with these issues at school, but we moved her to a small private school this fall, which was the best available option for her learning disabilities.

Our goal with school is to make sure that Jessie catches up with her peers so that she can go to college someday, even if she needs more time to get there. The drawback is that Jessie’s school is a small protected atmosphere where learning is key; everyone wears the same uniform and there is absolutely no exposure to the bad aspects of today’s society.

Ignorance is not bliss; it’s dangerous, and I am so afraid that Jessie will be unprepared for life in college and beyond.

So where do I go from here? How far do I push my autistic teen? How much do I continue to limit her exposure to outside influences? In other words, how do I prepare Jessie for life in a non-autistic world?

I wish I had answers to these questions, but I don’t, because when it comes to parenting a teen who has autism, I have only just begun. I enjoy posting about my past experiences with autism to help other parents while they are going through the same issues that I have already faced. This is one of the few times that I have written about the issues I am currently facing, to which I don’t yet have any answers.

And I feel like I’m back to walking on egg shells.

My life as a parent of children who have autism often results in taking one baby step forward and two big steps back. I’m afraid that, if I make the wrong decision with regard to my teenager, she will regress so far socially that I cannot bring her back.

But, I can’t be Jessie’s shield and sword forever. I have to find a way to push Jessie out into the “real” world a little at a time so that she can learn to stand and fall on her own.

This “In Their Own Words” essay is written by Nianya Cambridge.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

  1. Shanna
    May 29, 2010 at 10:31 pm

    Dear Nianya,

    Don’t ever give up on your child. I have an 11 year old daughter with PDD-NOS. I found that my daughter does not like a challenge. As her mother, I’ve never let her remain comfortable. Once she was able to overcome the obstacle, she was more confident. I believe for your daughter and the fact that you insisted her to go to the school sleep in was a good thing. You stretched her. I know you questioned yourself when she said she felt lonely, you did the right thing and your daughter was blessed for it. Of course, always pray. God has a plan for your child as he has for mine. These children are brillant and God has a plan for all them.

  2. autismspeaksfan
    September 23, 2010 at 7:23 pm

    OMG has anyone seen this? It’s like Bruno Bettleheim all over again.

    http://cogprints.org/2593/1/ey…..rints.html

    The Image of the Mother’s Eye: Autism and Early Narcissistic Injury

    Maxson J. McDowell, Ph.D.
    scary scary scary! Other psychologists have lumped parents of autistic kids into this “Mindhack” “psychology and evil” type realm. Really sick stuff. It’s a growing movement if you scan internet you’ll catch it. So now it’s the parent’s fault again. Great. Thanks for the support.

  3. September 30, 2010 at 6:55 am

    You made some good points there. I did a search on the topic and some related sub topics and I have found a lot of corresponding views.

  4. October 16, 2010 at 7:19 pm

    Great art, I’d thank to writer becaus i have read here many exciting knowledge. I will subscribe to this blog. Best regards

    – Charity MATNEY

  5. Elyse Walters
    December 14, 2010 at 3:14 pm

    Nianya,

    I read your story and understand your questioning. I’m not a parent of an autistic child, but I am a mother of two. My daughter, Leanna, is 4 and my son, Eric, is now 18 months. I do know that I can’t truly understand exactly what you are going through but I do feel for you. What you wrote about, how you can’t be Jesse’s sword and shield forever is so very true.Pushing your daughter to overcome life’s obstacles in small portions are exactly what you need to do for you. She is building a confidence that no one can take away from her now, and she’s learning things about life that you as a mother can not teach her. My mother has always said to me that ‘experience is life’s teacher’. Even though Jesse will struggle in certain areas of life she will become the amazing woman you are hoping to raise. Perhaps this is my ignorance to your world but I offer you this: Teach her the tools you use that help her break down her problems. Also, teach her to hug herself, she needs to know that she can comfort herself even if the world outside is dark. Also, maintain your strengths. She will learn from watching you even if it takes her all the way into her adulthood to start to grasp it.

    Jesse does need to hold her own sword and shield, practice makes perfect for everybody. I want you to know that as parents you and I are not very far apart. What you wish for Jesse is what I wish for both my children. Not to the same degree, but I’m facing a much smaller version with my daughter. I feel I have done her harm by keeping her so close to me all the time just because this world is a scary place. Now that I have realized where she is in life and where she should be (because she lacks so greatly in the social department) that are teaching her the coping skills and the forgiveness skills that we feel life will throw at her. But underneath it all I still wonder “What is she misses the point and takes these problems to a whole new level or even gets herself in trouble” I question myself not just as a parent but as an individual and then I have to step back and say “if Leanna has the self confidence to listen to herself then the rest will begin to fall into place, even with the bumps in the road.” I wish the same for Jesse. I think as parents we have to maintain that steadfastness and even when we do question ourselves we have to stick to our decisions because we do know what is best for our children. We want our children to function in this world as strong individuals and being ready to take on the next challenge even when there are unsure of themselves.

    I hope I haven’t overstepped any boundaries, if I had then please forgive me. That was not my intention at all. I simply want you to know that you are not alone. Even parents without autistic children have the same fears and worries, just on a much smaller scale.

    God Bless.

    Elyse

  6. Stephanie
    January 16, 2011 at 2:21 am

    Dear Nianya, I have a cousin who is a teen with autism and you are right they are unaware of those few shades of grey, but in their own way they begin to exprience to understand because of the people by their side.You may not be your daughter’s shield for the rest of her life, but keep in mind all of the teachings you are preparing her for. You may feel that it is not enough but ask yourself what parent truly does that applies to every parent i think. when she’s out on her own one day but she’ll learn in her own pace she’ll learn.
    And please don’t worry that she might not like to socialize outside her school activities or church i’m a teen and i don’t even do that. But it’s good that you set boundaries and you know your daughter’s limittations and strong suits. That just shows what a truly devoted mother you are.
    I may not be a parent but my cousin and i have been together since she was born. As she grows she is somewhat shielded by both her parents and i but we try to let her know about those shields of grey the outside world where she will live her life with other people. It’s not easy but we have to be optimistic when we think about the future. We musn’t worry, we must have hope as well.

    Hoping for the best,

    Stephanie

  7. August 17, 2011 at 3:15 am

    This is a quite valuable post, I found it looking through Google. I think majority of readers will agree with your views. Finally – a person with common sense!

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