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…….

Advertisements

My Friend, My Favorite Family and her “Poppy” #1000speak

Family

Below is a post I wrote for #1000speak in April for that month’s topic “Nurturing”. I wrote about my good friend’s family. What occurred to me after reading my friend Alison’s Father’s Day tribute to her Poppy, was that this post was not only about nurturing but it was also a post about acceptance. What I neglected to mention in my original post, was the fact that Alison’s Poppy was white. Alison, her mother and brothers are black. I met Alison in elementary school and we became friends somewhere around the late 60’s/early 70’s. This was not the norm back in those days. I honestly don’t remember being surprised and if I was, it certainly did not last long enough for me to even remember or think about it. When I read Alison’s post I realized that is was entirely possible that their road together as a family may have not been easy back in those days. They may have faced obstacles and backlash from others. It really never occurred to me. I loved them for them and I suppose I assumed that everyone else did as well…. It certainly seemed that way to me.

Alison’s Father’s Day Tribute :

There was a man who gave his love to three children that were not his own. Though not of his own blood he shed blood, sweat and tears to make them feel loved despite not being their biological father. He was quite young when he took on this task but the age it didn’t matter. He stood up to the task until he went to be with the Lord. He dedicated his life to taking on the task of being a father. Not only did he become a father to these children but also loved their friends and treated them like family as well. Now when he became a father to these children, it was taboo because they were black and he was white.

I told this story for two reasons, one because what has been experienced recently in our country regarding racism and because I wanted to celebrate my Poppy,  a white man who loved three black children and their mother and didn’t care who knew it. I honor my Poppy because he showed me that it doesn’t matter if you’re black or white.

Racism isn’t dead- it has been flying under the radar and now has reared it’s ugly head again. Poppy, I thank you for showing me that we can live in harmony and true love for one another. You were a perfect example to me that it doesn’t matter if you’re black or white it is truly the character of your heart! RIP and I miss you and love you even more!!!!” – Alison

This family and the relationship my friend had with her “Poppy” was the inspiration for the post below. I knew I would repost this post someday and I am happy to repost it now with the addition of  her heartfelt  and loving words for the man that meant so much to her and her family.

Alison’s “Poppy”

family

My friend Alison and I met in elementary school. We became fast friends and remain friends to this day. I loved everything about her, including her family. I spent so much time there, I’m sure they were afraid I would never go home. Especially in the summer. In the summertime there was more time to get there and home (it was a hike) because it stayed light out longer and the rule of “getting home before the streetlights came on” was not as impossible to adhere to. (Seriously…. how does one know when the streetlights are going to go on until they are on?)

Alison had a stepfather, his name was Tom. I also have a stepfather. This was not as common back then in the late 60’s/early 70’s as it is today. Maybe it was, but in my little world, I thought I was the only one until I met Alison.

I was always so in awe of this family and a little bit envious as well. Okay….. very envious! I wanted to live there…..

Tom would pull up on his motorcycle everyday after work and my friend and her brothers would greet him – they were happy to see him. This was just alien to me. He was happy to see them too, every single day! I was just puzzled, but impressed. From the outside looking in, one could just see how much they loved each other. This was amazing to me. I will say it again – I was in awe.

This man married a woman with three children (she is pretty amazing herself). He raised them. He treated them like his own. He loved them like his own and they loved him right back, just as much.  Now, I am sure this happens  but this certainly was not my experience in having a stepfather, and my experiences were all I had. I didn’t know it was or could be different.

Even as a kid I recognized that he was one of those special people who you’d be lucky to have in your life. I just always thought he was truly amazing and I still do.

Alison and her family moved away when I was 16. We’ve kept in touch over the years and I just went to attend her mother’s birthday party a few weeks ago. Tom has since passed. Each year when I see Alison’s post on the anniversary of his death I take the opportunity to remind her just how lucky she was to have had this man in her life. I know that she knows this, I know… but I just have to tell her, every year.

Just a few days ago I noticed her anniversary post:

Seven years ago today one of the most important men in my life went on to be with the Lord. My Poppy. I miss you every day, remember you and Love you more as the days go by. I will keep your memory alive in me until I see you face to face! Until then rest in peace…all my love!”

I never got back to the post to tell her once again, how lucky she was

-and what a wonderful man he was

-and how much of an impact their whole family had on me

– how they taught me that blood does not make a family and that some families really do care about one another.

So I am now…….

*********************

“Every voice matters – together we’re stronger – let’s BE the Village.

Join the 1000 Voices Speak for Compassion group on Facebook

Add your link . This month’s topic is ACCEPTANCE”

1000speakpage