Friday, December 27, 2013
Sunday, December 22, 2013
Friday, December 20, 2013
Saturday, December 14, 2013
Sunday, December 8, 2013
Thursday, December 5, 2013
One could (and would) say I am a little bit paranoid, just a tad…… especially when it comes to children. I drive myself crazy watching other people’s children. I’ve pulled drowning kids out of pools and lakes while their parents were not watching them, grabbed kids away from traffic, ledges or anything that may cause an injury, again while their own parents were not watching. When we go to a fair or some other type of event where there are a lot of people, there is a good chance I will be bringing a lost child to security or helping him/her find his/her parents. There’s more; but you get the picture. I can’t help this. I have always been like this and have always said that I am just too paranoid to be anyone’s mother.
So why not give me a child with Autism…..
Welcome to a whole new level of paranoia…..
I was talking to my friend, Al at work last week. His son had just been sick; trip to the Emergency Room sick. He’s just fine now, but I can imagine how frightening it must have been at the time. This particular day was the day of his follow-up appointment. From there we moved on to the subject about his own paranoia. He insists on taking his kids to the doctor for everything (in his words). I get that! It’s always worth a trip to the Doctor to hear everything is alright than to continue to worry that a cold may not be just a cold…..just for the peace of mind. But he was beginning to feel that he was being overly protective.
Now, he has heard plenty of my DC-obsessed stories before but I decided he needed to hear a few more.
I told him that when DC was little I would calculate the time that he would be alone until my ex got home from work if I dropped dead, “right now”. I’d make sure there was nothing around that could hurt him if something like that were to happen. I had no reason to believe I’d be “dropping dead” at any time, but just in case. I forgot to tell him that I would also force myself to watch Rescue 911 when DC was little and then have nightmares about all the horrible things that happened. When his father asked why I insisted on watching the show if I had nightmares because of it, I told him that I was afraid that they would show something that I hadn’t considered happening and I would miss it. – And there were actually a few accidents that I wouldn’t have come up with in my own head, believe it or not, unless I had seen the show. So there!
I also forgot to tell him about the time I called my poor sister-in-law at her cottage about 10 times because his father took him camping at the beach, near her cottage and didn’t call for two days! What if something happened to him and DC was in some tent on a beach of all places, by himself? – Fortunately his Dad’s sisters are used to me…..
I’ve been a single mother for 20 years now and I wouldn’t have it any other way, but being alone with a child with special needs can be, for me frightening at times. Anytime I am sick I wonder again, if I dropped dead “right now”, how long would it take before someone knows he’s alone? What would he do? Would he be safe until someone figures this out? As you can see, it’s not the “dropping dead” that I worry about, its DC being by himself for who knows how long.
The final nugget from the “tales from the paranoid mind” for Al was to tell him that when DC was young and we went grocery shopping; he would get in the car, I would unload the groceries and then I would walk the 20 feet to put the cart back, in full view of the car. But I would be sure to leave his door wide open because if I happened to get hit by a car in those 20 feet (or drop dead), no one would know he was sitting in the car and I can’t say for sure that he would get out or let anyone know he was there. He could be sitting there for hours before someone notices. At least someone might wonder why there was a car door wide open in the parking lot and take a look inside.
– In any situation, I can come up with at least a dozen disaster scenarios. I can and do make myself crazy over this child, but he’s worth every second of the craziness.
(We won’t talk about the 6 days with no power, no phone and no cell service during the snow-pocalypse a few years back………)
Needless to say, Al went home that day feeling much better about himself.
And yes, He’s 22 and I do still check to see if he’s breathing when he is asleep
Sunday, December 1, 2013
The plan was not go to Disney. I did not want DC to think that every airplane lands in Disney, but....
it always happens...
"How can we be this close and not go?"
We headed to Orlando specifically to go to Universal for the new (at the time) Wizarding World of Harry Potter, then onto Puerto Rico. Disney was not to be in the mix.
But..... knowing how much he loves Disney, we couldn't skip it.
I have already written about the Disney leg of the trip in "Looking Handsome in the Princess Room" so I will just give you a few photos of that and Universal and move on to Puerto Rico....
There was quite a big storm the morning we left and it was doubtful that we would even be able to take off. If I remember correctly, ours was one of the very flights few that did.
The plan was to go to Downtown Disney first and then to The Magic Kingdom around 5 or 6 since it was not in the original plan. Universal would be the following day so we could spend more time there than we did during the last trip.
When we arrived at Disney at 5:30 we discovered that it was CLOSING at 6 pm!!!!!!! The entire park had been rented out for a private party!!!!!
Try explaining THAT one to DC!!!
This meant that we had to try to do both parks the following day.. So much for spending extra time at Universal.
We should have stuck to our "No Disney" plan, but it was too late for that.
I am a big baby and cannot (will not) go on the bigger rides. But..... it is a requirement that I be the one that rides The Cat in the Hat with him. When there is not line (even when there is), he just wants to get off and go right back in line and do it again. I have been on this ride more times that I can count or care to remember.
Moving on to Harry Potter... It was so, so crowded....
On to Disney: I believe this was the trip that we discovered Story Time With Bell was gone!
Me doing a Happy Dance:
But.... as a punishment for the aforementioned Happy Dance, we were required to see the castle show more than once... much more than once.
Finally... On to Puerto Rico (MY favorite place)
We left home during a storm a few days before and apparently they continued to get more snow.
DC seemed to be enjoying his "snow day" on the balcony...
A slide is always a hit, but the swim-up lunch was even better.
Walking (and riding) around Old San Juan
Please note the Hard Rock bag.... if there is a Hard Rock to be found, DC will find it.
It always amazes me; he is terrified of dogs, cats and most other animals, but horses.... not at all. (His terror of all animals has decreased a bit over the years)
DC loves to dance and joined the Cha-Cha lessons they were giving at the hotel. He did a lot better than I would have.
More dancing the following night.. I do not know the name of the dance they were learning but DC did a great job again!
Puerto Rico was a hit with him. I was worried, but he did really well.
Just so you know...... Doug's choice of footwear was bad enough but WITH socks......
was NOT happening.....
No, No. NO!
Saturday, November 30, 2013
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.
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
Thursday, November 28, 2013
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”.
Sunday, November 24, 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.
Saturday, November 16, 2013
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
Thursday, November 14, 2013
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.
- 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.
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…….
Sunday, October 13, 2013
This year we decided to forego our annual October/Halloween weekend in Salem to attend NY Comic-con.
October… Costumes… it qualifies.
This was our very first “Con” and me, in my infinite wisdom, decided not to start small. Nope…. New York City…. Huge…. Mega Crowds…. but I have to say that it really went well.
Even though we would be in the city for the entire weekend (New York City is DC’s favorite place in the world) I opted for just the one-day/Saturday ticket. I knew that being in New York and not walking around the city and the crowds that I was anticipating would not make for a very happy guy. If this was a bust with DC at least there would be the bright spot of spending the rest of the weekend visiting his favorite places – Hard Rock, Central Park, Toys R Us, The Eloise Store in the Plaza and the Hershey Store.
Since most of our day was posted on my Facebook page, I am going to take the easy way out and just re-post those posts – they say it all anyway….
Once we made it through the crowd outside (pictured above) we headed to the vendor floor – the autograph/photo-op room was not open yet. DC wanted to see Felicia Day and only Felicia Day – but first; the vendor room.
Just as we were making our way out of the vendor room because of the crowds, we happened upon Mike Tee-Vee. The real Mike Tee-Vee. Talk about a find! DC was so happy! If we had walked down a different aisle we would have missed him. Fortunately it was early and not too many people had happened upon him yet so he was able to take his time with DC.
Waiting in line for Felicia Day. He had waited almost an hour and just as I thought he couldn’t take it anymore, she came out. She came out 20 minutes BEFORE her scheduled time. It was still another half hour before we made it to the front of the line but just seeing her up there kept him focused. Can’t love her more for doing that!
Some illegal photos Doug took while we were waiting.. until he was screamed at by the staff, that is.
DC with Felicia Day… She was wonderful. She held his hands and asked him which Dr. Horrible song was his favorite. (He was going to wear his Dr. Horrible costume, but changed his mind at the last-minute which was probably for the best)
DC loves “Penny” from Dr. Horrible but he also knows her from “Erica” (Eureka). He was thrilled. She let us take a picture even though we were not supposed to (as much as he loves her, I just could not make him stand in another line for a photo-op with her)
There is a Walking Dead panel later today that I am dying to go to, but … yeah… that’s not going to happen.
Lunch: Pretzels on the floor. The pretzel line was the only manageable line for food we could find. If he was not looking forward to dinner in the city later, THIS would not have gone over well at all. – *Note to self
I told myself all day that I would not spend the money they are asking for William Shatner’s autograph. Well, I caved. How could I attend my first Comic-Con with William Shatner in attendance and skip him? DC does know him of course because I am his mother. I was nervous but William Shatner was nice to him. We were not allowed to take photos (and no, I was NOT going to pay for a photo-op), so this was the best we could do. We completely forgot to tell him that DC shares his birthday!
Ready for dinner in the city…