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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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…….

Cinderella, Santa, Haunted Houses and other “Scary Stuff” (or: Vacation debacles that worked out somehow)

A few years back…. well, probably more than just a few, we took a trip to Lake George. I remember going there as a kid. I remember Story Town, which we discovered when we arrived was now just a small part of The Great Escape Amusement Park. I remembered the North Pole that was quite a drive from Lake George, but worth the trip. Specifically I remembered that in Story Town there was a Cinderella’s Pumpkin Carriage ride. My son was a Cinderella fanatic. He was obsessed, still is at 22. “Citronelle” was one of his very first words.

We arrived at the Great Escape and at the entrance was a sign listing all of the rides that were not operating that day. You guessed it…. Cinderella’s Carriage was on the list! Well, he got to SEE the carriage anyway and since there was also a castle (sort of, it was just a Prop) he got over the carriage ride a little more easily that I thought he would.

carriage

We had a good time at the park anyway.  I think I was more disappointed than DC was. I was just so looking forward to him being able to ride in the carriage. He would have been thrilled.

The next day we were heading to the North Pole. This would definitely make up for the missed carriage ride! I checked the local paper the day before and found an ad that stated it was open daily and listed the hours of operation.  It took quite a long time to get there – about an hour and a half, if I remember correctly. When we arrived at the park we found it “Closed for Construction” for the next few MONTHS!  Now I had to explain to him that the park was closed and we would not be seeing Santa today. That went well…………..(not!)

On the way back to Lake George, we happened upon another very small park called “The Magic Forest”. The park was small, cute but very run down and old. DC didn’t care.  He made me walk through a dusty, beat up “Princess House (cave)” 20 times or more. The Princess house cave was filled with dirty mannequins with peeling paint with cobwebs everywhere, but he LOVED it!

20 trips through the Princess House

20 trips through the Princess House

We took a ride on the train that got stuck on the way up a hill and the employees had to get out and push, but he still loved it.

There was also a SANTA!  So the second day of our trip was saved!

Santa Saves the Day!

Santa Saves the Day!

The next day we decided to walk though the town. I remembered a pretty cool wax museum which, surprisingly was still there. We also came upon a Haunted House. DC loves all things Halloween and loves Haunted Houses; always did, even when he was very young.

He wanted to go in. After only two minutes inside, I began to realize that this was a mistake. He was terrified. He put both arms around my waist and I had to keep both of my arms around his neck/head; and this was the way we walked through the rest of the house, with DC walking sideways facing my side, with both arms around me and both my arms around his neck. All the way thorough, all I could think was “What have I done? This child is terrified! I’ve scarred him for life”. I felt so bad that he was so frightened. I kept telling him that he was okay and it was all make-believe. We finally made it out and he seemed all right, but I still felt awful. It WAS really, really scary.

We continued down the street. I continued to ask him if he was okay and told him to remember that it was all just make believe. He seemed fine.

As we were walking DC stopped, pointed and said “Go In”. I looked over and he was pointing at another haunted house. I tried to explain to him that this was a “Scary House” just like the last one and I really didn’t think he wanted to go in. DC kept pointing and saying “Go in” and was now dragging me toward the line. All the while I was trying to explain that this is scary just like the last one. He got me to the line that I had no intention of getting in, and he proceeded to wrap both arms around my waist and had me put my arms around his neck/head and got “into position” to “Go in”.

Apparently, he did understand that this was another haunted house and as much as I thought he was terrified, he wasn’t – he loved it and he was “Going in!”

So, no…… Not scarred for life at all.

DC did get to ride in Cinderella’s Carriage a few years later at another park in New Hampshire.

He still loves Haunted Houses, but you would never know this as he’s going though them.

“Look in the mirror and spit cookies”

"Look in the Mirror and Spit Cookies"

“Look in the Mirror and Spit Cookies”

One of my greatest fears (one of them; I have a million) is DC having something medically wrong with him and I won’t be able to tell.

Unless he has a fever,  throws up or passes out right in front of me (try catching a 200lb boy at 3am) there is really no way for me to know.  He doesn’t really let on that there is a problem and when there is, his behavior is pretty much the same as it always is. I don’t know if he doesn’t feel pain like the rest of us or he just doesn’t process it the way we would expect.  This boy can run full speed with a sprained ankle!

When he was younger, he would “tell” everyone that he was sick; actually he would just sign “sick” with no other details. Most of the time he was not sick at all, but he knew the school nurse had jellybeans in her office so that is where he wanted to be! Then he discovered when he was finished with the jellybeans that they would call Mom to pick him up. Most of the time, knowing that he really wasn’t sick, I would pick him and bring him to work with me – which he loves, so I wasn’t really winning any battles there, but I had to work. (We’ll forget about the ONE time, he threw up all over my office, the ONE time he really was sick and no one believed him. I guess he showed us!)

On the few occasions that I did suspect that something might be wrong, I had to resort to asking him questions that I hoped he would respond with a “No”. The more ridiculous the question, the better. Because he answers “yes” to everything, I can’t lead him to an answer by asking;

“Does your head hurt?”

“Yes”

“Does your stomach hurt?”

“Yes”

If I ask him more than once, all of his answers then become “no” because he thinks he’s giving me the wrong answer.

So I have to ask “Do your eyebrows hurt?” or “Does your hair hurt?” By asking him this sort of question, he thinks it’s funny, gives me a “no” and then he understands the question and sometimes even tells me what hurts.

Because I had to do something about his daily jelly bean pilgrimage to the nurse’s office, I stopped taking him to work when they called. If he was so sick that I had to pick him up, he had to go home and rest. That ended that game, but now he won’t tell me anything at all because he’s afraid he’ll have to rest or worse…. go to the Doctor!

There was one time when he did tell me…..

Well, sort of…

One night he ran by me on his way upstairs. I asked him what was wrong and where he was going.

“Look in the mirror and spit cookies” and he ran upstairs.

After a very confused few seconds, I realized that a few months back I went upstairs and found a disgusting mess in the bathroom sink. It was apparent that DC was sick (evidence! YES!) But instead of telling me he just went to “listen to the music” in his room.

I realized that “ looking in the mirror and spitting cookies”  was his way of telling me he was going to be sick, because that last time, he was in front of the sink, in front of the mirror and he had eaten cookies!

I was right and yes, this is the way my mind has to work to be able to figure anything out.

I’ve told him so many times that it is very important for him to tell me when something hurts. Mom might have medicine to make it better; it doesn’t always mean a trip to the doctor. We have this discussion at least once a week. I didn’t think I was getting anywhere.

The other morning I heard, “come here please”. I went upstairs and said “What’s wrong, DC?”

“I need your help”

What do you need me to help you with?

“Nothing, I love you” (I didn’t find it all that odd because he calls me upstairs quite often to tell me he loves me or to tell me what he wants for breakfast the next day).

I went back downstairs. He came down looking a little out of sorts. I asked him again what was wrong.

He proceeded to tell me, not in the words you or I would use, but he told me! Luckily I had medicine to fix it! He was okay in about 20 minutes.

So I’m hoping that he’s realized that he can tell me and sometimes I can fix it and it doesn’t always mean resting or going to the doctor. I’m also hoping this means if something is bothering him enough, he will say something, which is a little bit of a load off my mind.

Just one small step in the right direction……..