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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Insert: ‘Colorful Metaphor’ (or: The things I am tired of hearing)

colorful

These and many variations of the same, are comments I often hear

  • “You are so lucky that DC can travel”
  • “You are so lucky that you can take him places”
  • “You are so lucky that…… blah, blah, blah….

Luck does not have very much to do with it! DC’s accomplishments took a great deal and many, many years of hard work. Now I do understand that all the work in the world may not always make a difference and I am certainly not saying that the parents who are having a more difficult time of it did not or are not putting in the work – but seriously, why is it always about luck?

How many times have I heard that same line? “You have it easy, DC is such a good kid.” – Why are we made to feel as though we should apologize for our children making strides and accomplishments? Isn’t that the goal? I have also had other parents tell me that they are made to feel as if they have nothing to contribute because their children are just not ‘difficult’ enough by someone else’s standards. Or the line that I love the best – “You just don’t know what it’s like”. I have heard that one many times from parents of autistic children as well as parents of NT children. No, maybe I don’t know exactly what your life is like but I can certainly say the same to you.

When DC was four years old, his school speech therapist informed me that he would never speak. He speaks. He is verbal. Conversation is difficult, but he is verbal. Would he be able to speak now if I believed the nonsense that this therapist was spewing? No, I went out and found him a private speech therapist while continuing to fight with the school system.

I can take him places because I TOOK him places. I am a single mother – have been for a good 23 years. I took/take him everywhere. If I did not, he or I would never have left the house.  It wasn’t always successful, many times it was an out and out disaster. Most times we were both in tears by the time we left but we kept at it.  Did I let it bother me or deter me from taking him shopping when the check-out man at the Health Food store saw fit to stop the entire line while DC was wigging out (we didn’t have the official “meltdown” word way back when) and I just wanted to pay and get out of there before I burst into tears? When he found it necessary to give me his opinions – in front of a line of waiting customers – about what vitamins and/or supplements I should be giving him to calm him down? <Insert colorful metaphor>

Should I have stopped taking him out when he would grab food off of other people’s tables when we walked through a restaurant? (I always offered to replace the food or drink he may have touched before I could grab him). No, I learned that I had to hold both of his hands and tell him over and over again that he should not touch other people’s belongings, until he learned and until I felt that I could trust him not to. That took years.

Should I have just given up and just stayed home when he had ‘meltdowns’ and frightened the other children repeatedly in his gymnastics class, birthday parties and a number of other places? I don’t think so. Keep in mind that Autism Awareness/Acceptance was not even an idea back then. There was next to no information, guidance or support. We were pretty much on our own. IPads? We barely had the internet.

I could go on and on…….. and on…and on… but I won’t.

Why are we not allowed to celebrate the accomplishments? Why should I be made to feel as though I should apologize that he is a happy guy?

Don’t get me wrong, I am not complaining about any of the work. This boy has worked just as hard if not harder than me. I am quite positive that many people are in the same boat and we will be in this boat together forever. Everyone has their challenges and we should respect those challenges, even if the challenges are not visible.  We can’t just take everything at face value.

DC is 24 years old. He is a happy guy.  He has a good life. He is the joy of my life. But even with all that he has accomplished the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings. Even though his father and I have taken steps to be sure he is provided for, and have designated guardians in the event that anything should happen to both of us, those people are all my age or close to it. He will long out live all of us and realistically I should be looking at people his age, but I really do not have any options in that age group – again,  he doesn’t have  brothers or sisters. He will probably have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers. This is devastating to me. It is what keeps me awake at night.  It breaks my heart already.

He deserves to live the rest his life just as happily as he lives now; and that is the one thing I can not promise him.

How lucky is that?

**** I have written and rewritten this post many times over the last few months attempting to reduce the high on the  hostility meter to at least a mid-level reading. I hope I was successful.