DC flashing the I Love you Sign as he does almost anytime he walks by me.
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…….
To whom it may concern – Lost at Dunkin Donuts
(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 that to that the fact that he will not go to sleep until I get home. He is all right for a few hours but after a while he will begin asking/ repeating “Mom is coming home soon”. There is nothing anyone can say to make him stop asking/repeating that phrase.
(File that, bit of information for later)
Now, on to 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 I told that this was not the best idea. One 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 pressure the Town Park and Recreation Department to develop Adaptive Recreation Programs for disabled 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 that 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 could not, 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! Doug had no cell phone remember, so I could not 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 were lost.
I asked why he didn’t just call me if he was so worried or if DC was driving him that crazy.
Blank stare…… crickets……..
BECAUSE HE DIDN’T KNOW MY CELL NUMBER AND HE COULD NOT 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? They had to go right by on the way to the first Dunkin Donuts and again on the way to the second.
“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 OF 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 page and seriously considering “losing” 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, as 11:15 is cause to send out a search party.
– I must spend much 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
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 write stories about my son because:
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.
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…….
Let’s begin by saying that DC does not like to keep anything in his pockets. He will put his cell phone and wallet in his pockets; but they come out the second he gets inside the house…… nothing else. So much so that about a year ago when I asked him to put his gum wrapper in his pocket so he could use it when he was finished (instead of handing it to me straight out of his mouth or sticking it to the console in my car), he immediately threw away said piece of gum and hasn’t had a piece of gum since; all because I asked him to put the wrapper in his pocket.
Planning ahead:
He really doesn’t have any concept of planning ahead. He knows when he’s going somewhere or doing something, but he really can’t plan, for example, what he’s going to wear or what he should bring other than the pile of books that he travels with.
Two years ago we took a trip to Universal, Disney and Puerto Rico. DC has been to Disney many, many times so he knows what he wants to do and where he wants to go. He’s already got that all scheduled in his head. But if I asked him how many pairs of socks, pants, underwear and shirts we should pack for the week; he wouldn’t be able to figure that out.
Day one was spent traveling and visiting Downtown Disney
Dc in Downtown Disney
Day two we visited Universal Studios
DC at Universal
……and then on to Disney World, more specifically, the Magic Kingdom, DC’s favorite.
As I said earlier, he knows exactly where he wants to go and what he wants to do, so there was no question at some point we would be visiting the “Princess Room”.
After we made it though the line, outside the room, we waited inside the room with 4 or 5 other families to see the princesses.
While we were waiting behind the ropes, in full view of all of the princesses, DC gave me a bashful smile that I had never seen before. He slowly pulled a comb out of his pocket. Snow White happened to notice the comb and said “Did you bring that comb to look nice for me?” DC now very excited answered in his very loud happy voice, “Yes”, and the flapping started
– Good flapping
– Happy flapping
At this point all of the other parents, princesses and workers in the room were watching him (not staring, watching)
– Good watching
– “Awww, how cute” watching
DC combed his hair and announced, again in his very loud excited voice, that he was “Looking Handsome” (more Awwws). Now he was the hit of the room and the center of attention. The other parents were taking pictures of him, the Disney Video Guy (I never did find out what that was all about) was taping him. DC was eating it all up, and then he turned on the charm.
The other parents actually hovered as long as they could to see him when it was his turn with the princesses. In true DC fashion, he held their hand, took a bow and spun them around as if they were dancing at the ball. He added a new “move” to his list that year and began each conversation with a line from one of their songs.
He told Snow White that someday her prince will come.
Looking Handsome for Snow White
He told Belle that the was “something there that wasn’t there before”
Something there that wasn’t there before
…. And he informed Arora that he walked with her “once upon a dream”
Once upon a dream
– The boy knows his Disney songs!
Did I tape it? No, I was too busy getting teary eyed about the whole thing.
The Princesses were wonderful with him! They all made a big deal over him and he was the happiest “kid” in the park that day.
On the way out of the room the man with the video camera gave us passes for that night. The park was to stay open an extra 2 hours after the official close time for the people with passes. There was a party, music and no lines for the rides. It was a wonderful night.
Just think about this though, because I have thought about it so many times…..
*DC knew that he, without a doubt, would be going to the princess room .
*He thought ahead
*He put a comb in his POCKET BEFORE WE LEFT HOME
and
*He remembered to bring it with him to Disney World a full two days later!
This may not seem like a big deal to most of you but I’m sure that some of you will understand how mind-blowing this was for me!
Between you and me, I think the real reason for bringing the comb was that he wanted to comb “princess hair”, but the fact remains – he thought ahead.
One of these days I will tell you about his next meeting with Snow White a few years later…..
Taking it a Step at a Time 