Revisiting “Feeling Chastised”

The following was written a few years back. It was written more about the discourse  within the autism community and not about autism awareness or acceptance. In actuality, I suppose it could be looked at as a piece supporting  the awareness, acceptance and respecting the differences in the ways parents view autism. There is far too much hostility.

I am re-posting now, in this, the month of April. With all of the added awareness and supposed acceptance that has taken place over the last few years, really not too much has changed in this, our little corner of the world, or in my friend’s corner of the world. Not very much at all.

If anything; things have become more difficult….

Dear Abby – Feeling Chastised in New England

Let's all celebrate

Let me just begin by saying that since I began writing this blog I have had the pleasure of meeting a few Autistic Adults.  They are amazing individuals that do a great deal to raise awareness about autism. I “speak” with one in particular often enough to consider him a friend. He is a wonderful human being and it makes my day to “talk” with him or just read his posts. He is truly an inspiration to parents of children with autism, other teens and adults with autism. But above all that, he is a glowing example of the good things that can be found in today’s young adults in general. I don’t think of him as having autism, I think of him as my friend, plain and simple. I’m honored to have him as my friend.

My son’s autism or level of autism  is not like my new friends’. Autism affects each person differently.  Therefore, parents should not be made to feel inferior or chastised for their own beliefs. Everyone is different, everyone. There is no right or wrong when it comes to autism, just a lot of people arguing with each other, it seems.

Today I received this private message on my face book page from a friend of mine who is pretty much in the same boat as I am “level-wise”.

The fact that she did not feel comfortable posting it publicly, speaks volumes about the environment we find ourselves in with the hostility that she (and I) knew would have ensued had she posted it publicly.

(The following message is used with permission. The names have been changed to protect the innocent)

Dear Abby (Vickie)…I think I’m missing something. Why is it wrong to feel like I’ve lost something in having an Autistic son? Why are we supposed to not want a “cure” or something that helps them handle this world we live in a little better? I look at the video of Bob from birth to 18 months and there were signs, but he was still there. It was June of 1996 – he was 18 months old – all of a sudden he disappeared. He is lost to me. He will never have a normal life. He will constantly need care and supervision. There are many people that are on the much higher functioning side of the spectrum that can navigate the world today. Bob is not one of them. Why am I supposed to not want that to be different? People say you don’t miss what you never had – but I know what could have been. I know what life he could have had and now for sure will not. He will find happiness somehow; he will be as productive as his disability allows him to be. But the sky is not the limit for him. The opportunities for him are not the same as they are for my daughters. Why am I supposed to celebrate that? With all this  hullaballoo about celebrating autism over the last few months, I’ve been feeling like a minority. I think these kids are lost – lost to the life that could have been, lost to the possibilities that would have been. I feel they have a disability because they are “not able” to process and handle what happens in life the way others do. Why are we getting lost on the rhetoric? Am I missing something Vickie?

Feeling Chastised in New England

I have said this many times and in many different ways:

  • I celebrate my son as an individual
  • I celebrate my son because he is my son and I love him more than words could say.
  • I celebrate his accomplishments, no matter how large or small they may be.
  • I celebrate him because he is wonderful.
  • I do not celebrate his autism.

I write stories about my son because:

  • He is wonderful.
  • I’m very proud of him.
  • I’m very proud of his progress.
  • He makes me laugh every day.
  • He makes me smile every day.
  • He makes me worry every day.
  • I believe these stories shed a little bit of light on autism and the way his mind works – not all autism, but his.

I don’t believe anyone should be made to feel “less than”. I don’t consider my son “less than” but there is an issue. There is that life he could have had. Maybe it would not have been a better life, maybe it would have been, but at the very least he would have been able to understand it and navigate through it.

Celebrate Autism? I can’t do that. Maybe others can, but I cannot celebrate his level of autism.

Individuals should be celebrated, not the diagnosis.

Like “Feeling Chastised”, my son will never be able to live on his own. He will never be able to take care of himself. He will not know when/if he’s being taken advantage of. He does not understand danger or safety. He is verbal but really not able to communicate if something might be wrong.

My suspicion is that many of these parents in celebration have younger children or children that can function at a higher level than mine. They still have hope of great progress, and they should have hope, there is always hope. I still have hope for more progress, but living in the real world I know that even though he continues to make progress, none of the issues listed above will improve enough that I will not spend every day and night worrying about what will happen to him when I am gone. This is the stuff our nightmares are made of. What’s going to happen to them when we’re all done celebrating autism? Our “kids” are going to outlive us, people. Who’s going to take care of them? Will they be cared for in the same fashion that we have cared for them?  How drastically will their life change then? Think about it.

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?

When your child with Autism becomes an adult with Autism and your own mortality begins to slap you in the face, come back and talk to me then about this celebration we are supposed to be having.

Those of us with adult children that will not be able to live or navigate the world with out constant support, that have been in the trenches for many years, long before there was a “spectrum”, long before there were many of the services available today, deserve a little bit of respect and deserve to be able to voice our opinions as you are allowed to voice yours;  to want something more than a celebration.

I believe in raising awareness. I believe in trying to make people understand Autism. I believe that INDIVIDUALS and accomplishments should be celebrated. I also believe some of us need more than that.

My only wish is to be able to die in peace knowing my son will be okay…….

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9 thoughts on “Revisiting “Feeling Chastised”

  1. Thought-provoking piece. As an autistic adult who also a mom to autistics, I do choose to celebrate our neurology as it is a part of us and the way I believe God created us. I know some really bristle at that thought. But, I don’t presume to have all the answers or speak for all. I can actually see your point a bit. Everything can get divisive this time of year. I think the problem is when language gets generalized. On the whole, I hate to say, there is still way more out there about the “tragic” side of autism than anything. Hence, why I still have to hear things like, ” Oh, I’m sorry.” when I mention my children are autistic. Even heard it said about myself. This is why so many of us get rather vehement. We are fighting to be recognized without being belittled. But, you do deserve a voice in the community as well, as does your child. I think we forget how wide the spectrum is. If we could only learn to make room for one another instead of dismissing each other, such good could be done.

    Liked by 1 person

    • I understand and agree with everything you’ve written. I do celebrate my child and I’ve said more than once, if I didn’t someday know (because he will out live everyone I have in place to take care of him when I go) that he will be alone in the world, not able to take care of himself and dependent on strangers and/or the government – I would not want to change anything about him or about his life. It’s the nightmare of knowing that he is totally dependent on the care of others that keeps me awake every night. I do not presume to speak for everyone either, but we are parents and we worry. I worry about him not understanding safety or strangers, not being able to verbalize if something is happening to him or if something is wrong – I am terrified about what will happen to him. Right now he is happy. He is happy in his life. I want to know that he will have the same quality of life later on.
      Thank you for reading and commenting. I do understand where you are coming from. No one should be made to feel less than or have to hear, I’m sorry about the diagnosis. I understand the battle you are fighting to have a voice and you absolutely should have a voice – a big voice. I just don’t want people to forget that my son does not have one. I am his voice. Yes, I agree that people forget how wide the spectrum is. I believe they need a reminder at times.

      Liked by 1 person

      • Oh, I hope you didn’t think I was accusing you of trying to speak for everyone! Far from it. I just wanted to emphasize I was responding only from my own experience. Sorry if I didn’t communicate that quite right. 🙂 I understand the fear for sure. I worry myself about how mine will function without me.

        Liked by 1 person

      • Oh no! I didn’t take it that way at all. Not at all. You communicated perfectly. I tend to over explain everything which many times makes my responses and what I am trying to say much less clear to others. It was probably me who wasn’t communicating properly 🙂 – I do it often 🙂 – so often that one might wonder why I write a blog 🙂

        Liked by 1 person

  2. Thank you for such an honest, loving post. I agree with it 100%. I feel like while there is all this awareness now it comes with a price of being shamed if you choose to still think of autism as anything negative.

    My son is almost 7 and the future is not certain. I’m awake at night of course thinking about worst case scenario. I told a friend that I was worried and her response was ” no one knows if their kids will turn out ok”. Valid point, but I already know his chances are significantly less. I realize that what I’m worried about is just a completely different viewpoint than most parents will need to consider. It’s reassuring to read others having these thoughts. I don’t feel so alone. Thank you!

    Liked by 1 person

    • Having heard the same sort of thing from friends, that do not seem to understand the difference between what other parents worry about and what we worry about – (do they need to get a babysitter for their 26 year old child in order to go out? – I doubt it), I wish I could make people understand that our fears, however irrational they may seem to others are valid and real (and 100% rational. The older I get, the more these fears overwhelm me. Thank you for commenting

      Like

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