We can’t have it both ways…. but it’s still a little bit sad.

Today was my son’s first day going to day camp this summer. He has attended this camp since he was 5 – he’s 22 now.

Every summer he would go to camp all summer long, even staying after until 8pm for a special after camp program they hold twice a week. He loves it there.

Now that he’s 22 and aged out of the school system, he is in a work program, year round. I was shocked when I started looking at programs for him that they don’t have the summers off!

Of course they don’t, they are adults and have to do their job every day, just like we do. But it was a rude awakening for me at the time.

Everything changes after “school-age”.
He has aged out of Challengers baseball. Seventeen years of baseball….over.
No more February vacations, Spring Vacations or Summer vacations.
He is “working” now, with 3 weeks’ vacation, holidays and some sick time, just like everyone else.

This was probably the hardest transition for me so far. I have to think to call work, “work” and not “school”.
It takes a minute, when I panic that I haven’t set up anything for February vacation to realize that there is no February vacation any more.

Him becoming an Adult may actually be harder on me that it is on him. It is just such a huge change.

Yes, I know we are moving into adulthood and working toward independence; as much independence as his capabilities will allow.

Yes, I know this was the goal all along, but on the other hand, he’s still so much a child.

He’s still watching “Barney” (22 years of Barney! That’s a Support Group I need to form, anybody?) - he is still reading and watching Disney and is not embarrassed to hug and kiss his Mom.
On some level, for me, as much as I always work and hope for more progress, I love it,  it is nice.

This should be a happy time, and of course it is. He is an adult. He is in a program that he loves, but when summer comes around and it is time for camp to start, it’s a little bit sad that he doesn’t get to spend a fun filled, happy-go-lucky summer at camp as he used to. He only gets his two weeks.

Because…..

he’s an adult now………

****

Originally Posted - We can’t have it both ways…. but it’s still a little bit sad.  at Taking it a Step at a Time

“I Love you, Mom” (Just a little Thanksgiving Quickie)

Who would not be thankful for this wonderful child who will just flash me the “I Love You” sign, just because he happens to be walking by or just randomly peek around the corner to say “I love you, Mom”.
Happy Thanksgiving…….

“Describe Your Child in 200 Words or Less” (From Archives – June 14, 2013)

I’m sitting here once again trying to fill out a form to describe my son, one of the hundreds of forms I’ve had to fill out over the last 22 years. It doesn’t get easier. This particular form is for the Police and Fire Department for a program that keeps information on file about the special needs children in town so if they wander, become lost or if some emergency happens in the home, the police and fire departments have pertinent information on our children, their disability, how to manage the situation, what makes them anxious, what calms them down, where they might go, etc.
It’s a very necessary program and we are thankful to have it, but how do you explain autism to anyone who knows nothing about it or knows only what they’ve seen on TV, movies, or read in a few articles?
How do you explain my son without writing pages and pages of examples and still not be able to make it clear for anyone?
He was taught never to open the door, so he is NOT opening the door, for ANYONE, even to the police. He will stand behind the door and yell “Don’t open the door” but he’s not going to open it. I can’t teach him not to open the door to anyone, except for the police or fire department. There is no “except for”, no grey areas, it’s one way or the other.
How do you explain how to ask him a question, knowing that most times he will not understand the question and if you ask him more than once he will just resort to “I don’t know” or “Nothing’s wrong”.
This doesn’t mean he doesn’t have something to say, it only means he doesn’t know how to get the answer out and he’s afraid he’s giving the wrong answer so he’ll change it if you ask him more than once, BUT you also HAVE to ask him more than once to be sure he’s not giving you a random answer so you’ll stop asking. You also have to be careful not to ask in a way that might lead him to the wrong answer and even then you don’t always know if you are getting the correct information.
How do you explain that he gets “me” and “you” mixed up, “mine” and yours”, “do” and “don’t” – but only some of the time? How will anyone else be able to determine if he’s getting it right or if he has it reversed?
Most forms that I’ve had to fill out over the years ask if he is “Verbal” or “Non-Verbal” – there is no cut and dry answer to that question. “Verbal”, to a person that doesn’t have much exposure to Autism, will assume that it means he can communicate. Verbal and Communication can be two VERY different things. Yes, he is verbal, but for the most part it is to communicate what he wants or needs, if he’s proud about something, or to recite random and often obscure Disney or movie lines; he really can’t communicate when there is something wrong and/or what is wrong, if he’s sick, or if something hurts. Answering that question so it makes any sense at all is always an issue.
Add this to the fact that everyone is different; there are no “engraved in stone” symptoms that everyone with Autism shares – they can be as different as night and day.
I don’t know what the answer is, I don’t know how we can make others aware of the many differences in our children without giving them pages and pages of information( that most won’t make it all the way through) and still will not give the full scope of what they are all about… individually. There is such a wide spectrum (“spectrum”, a rant for another day) between “Rain Man” and “Max Braverman’s” of the world. I still don’t know, after 22 years of trying, how to explain it at all and worse, how to explain it on paper.

A Series of Ridiculous Events

(To lighten the mood a just a little bit.)
Many of my stories are about my son, DC and his autism. I suppose this is one of them, in a round-about kind of way. Ten years later, this series of mishaps still makes me shake my head and laugh.

DC does not like to have “baby-sitters”. He is good with the people he had after school and now that he is finished with school, the people he has after work.  He is fine with that because they are here when he gets home and I am not; I am still at work. If I am home and then leave him with someone; that is a whole different ball game. He doesn’t tolerate it well, at all.

Add to that the fact that he will not go to sleep until I get home. He is okay for a few hours but after awhile he will begin asking/ repeating “Mom is coming home soon”. There is nothing they can say to make him stop asking/repeating that phrase.
(File that, bit of information for later)

Now, onto Doug…..

Doug is always the last to embrace any sort of technology. In 2003 (or 2004), he did not own a cell phone. But, in his defense, that was still a time when not everyone owned cell phones. We were still required to actually KNOW other people’s phone numbers.
Doug had my cell phone number programmed into his landline – “Speed Dial #2” – my home phone was “Speed Dial #1”.

There were many times that I told him that this was not the best idea. Some day he would need to call me and he would not be at home to hit “Speed Dial 1, 2 or 3 (3 being my work #) and he would not be able to get in touch with me.
(File this bit of information for later as well)

That particular year a group of parents got together and decided to make an attempt to get the Town Park and Recreation Department to develop Adaptive Recreation Programs for our special needs children. There were really no programs available at that time and we believed that it was only fair to have programs available to our kids just as they were available to all of the other children in town.

This project required quite a lot of time, parent meetings, petitions, and meetings with Boards, Commissions and the Town Council. It did not help our cause that this was a particularly hostile budget year; a proposed Zero budget increase year.

On the night of the Town Council meeting when they were to approve or not approve the proposed budget, Doug came over to stay with DC, so I could attend the meeting along with the other parents in the group.
I told him it would probably run very late since, as I said earlier, this was a very volatile budget year.
(“Very late” – another point to file for later)

I told him he could try to get DC to go to bed, but if he couldn’t he should just let him “relax” on the couch and with any luck, he might just doze off.

The meeting was long… very long. I checked my cell often to be sure there were no problems at home. I even went out into the lobby to call home around 9:30 and told him again that it was going to be late.

When it got to be about 11:00pm, I started to worry that if DC was still awake, and chances are, he was; he was really going to be driving Doug crazy asking for me. It was also a school night and I didn’t want him to be up that late.

One friend, knowing how obsessive I am about weight and my backside, said jokingly “If you get up now, your a## will be on live TV” as the council meetings are televised live (file that too!). So I stayed. After another 15 minutes, another friend and I decided we would risk it and got up and left together.

I got home around 11:30 to a note on the kitchen table:

It’s 11:15! Where are you? We went out to look for you.

So now I’m home, and they are out looking for me! No cell phone, remember, so I couldn’t even call to say I was home.
It was another 15 or 20 minutes before they came back. DC is now upset because not only was I not home, but Doug dragged him out at 11:15 to look for me as if I was lost.

I asked him if he was so worried or if DC was driving him that crazy, why he didn’t just call me.

Blank stare…… crickets……..

BECAUSE HE DIDN’T KNOW MY CELL NUMBER AND HE COULDN’T HIT “SPEED DIAL #2”!

He then told me that they were searching the Dunkin Donuts hoping to find me there.  When he didn’t find me at the Dunkin Donuts' in town, and the one in the next town over, he decided to look for me at my friend Donna’s house, because he assumed we were there  “gabbing”. Luckily they stopped back at my house first before barging into Donna’s house at 11:45PM.

!!!???!!!

Why didn’t he drive to the Town Hall?

“Who would ever think that a meeting would go on that long?! You people must be crazy to sit at a meeting that long!” (I said VERY LATE, I did, TWICE!) – If we go back to our “filed information” we remember that the meetings are TELEVISED –LIVE and he only needed to turn on the TV to see it was still in progress.

To add insult to injury, he wrote the note on THE BACK TO DC’s HOMEWORK!

So now, I am trying to get DC to bed and desperately trying to erase the note on the back of the homework page and seriously considering “loosing” his homework just so his teacher wouldn’t have the impression that I was out gallivanting (yes, gallivanting, I’m old) to the point that they had to go out looking for me.

So what did I take away from this series of events, you might ask?
-          Wear a long coat to all televised meetings.
-          I obviously don’t get out much, so 11:15 is cause to send out a search party.
-          I must spend more time at Dunkin Donuts than I ever realized.
-          I should leave messages at random Dunkin Donuts in the event people may
           think I am missing.
-         Trying to erase crazed notes written on the back of my son’s homework is futile. –
           Fortunately I had a parent/teacher conference the following week and his teacher
           got a kick out of the story. And… yes… she did see the note.

And regarding “Speed Dial #2”
              – Never pass up the opportunity to say “I told you so”
 
*The Adaptive Program budget was approved

Dear Abby – Feeling Chastised in New England

Let me just begin by saying that I have had the pleasure of meeting a few adults with Autism recently, namely my friend Charlie and Joshua. Both are amazing individuals that do a great deal to raise awareness about autism. I “speak” with Charlie 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 youth 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. Charlie and Joshua should be celebrated.
My son’s autism or level of autism (I don’t like the word “spectrum” but that is a rant for another day) is not like Charlie’s. 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. 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 Autism Speaks hullaballoo in the last couple of days, 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 have recently come to have my own issues with Autism Speaks and am in no way defending them. 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 higher functioning children. 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 are not considered “high functioning”, 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…….