Seafood anyone?

Posted by TakingItAStepAtATime

Just a quick post just because I am so proud of my boy. I have told him so many times since yesterday that DC finally said, “Mom, write story”.
I don’t know if he asked me to ‘write story’ because he is proud of himself too or that he just wants me to stop telling him every 5 minutes, but either way, his wish is my command.

DC and his dad gave me a gift certificate for Mother’s Day for a seafood restaurant. The restaurant is very popular I am told. I had never been there, but DC has been there with his Dad and a couple of other times on field trips with an organization where he participates in many of their activities.

The restaurant is about an hour away, so we decided to make a day if it.
For a kid that loves to go ‘out to eat’ almost as much as he loves going to the bookstore, he didn’t seem all that excited when we finally arrived. Also, for a kid who remembers EVERYTHING, he didn’t seem to recognize it and told me more than once in the parking lot that he did not want to go there (I think he was a little bit out of sorts to begin with yesterday).

Once inside, he saw that they had cheeseburgers on the menu and he also seemed to now recognize the place so he stopped telling me he didn’t want to stay there. DC’s standard order anywhere we go is: wings, cheeseburger, french fries and coke. I could see they did not have wings on the menu so I was surprised when he ordered “fried chicken” with his cheeseburger. I did not see that on the menu either and tried to explain this to DC. He was getting upset and luckily the girl at the counter stepped in and corrected me and said that, yes they do have fried chicken and we CAN order one piece as a side dish/ appetizer. I should have known that he of course, would remember what he had when he was there before.

– SAVED by the counter girl –

I told DC that he was correct and that Mom was wrong, which just put him in a better mood, because he LOVES when I tell him I am wrong. 🙂

We took a seat and not too long after, our food was ready. In the booth behind DC was a family; parents and three young children. In the seat directly behind DC’s head was the mother and two of the children, they looked to be about 3 years old. The two children were on the inside of the booth climbing all over the place and screaming, two inches from DC’s head. At first I didn’t pay much attention because there are times that noise really bothers him and other times he seems oblivious to it. This seemed to be one of the oblivious times, until all of a sudden, he looked at me, lifted his fists straight up next to his head, clenched his teeth and just shook! There are many times when I don’t immediately know what is wrong, but this time it was apparent.

I told him that I understood what was bothering him and told him that it might be better for him if we just moved his food to my side of the table and sit with me. First he refused, because he was all situated where he was, but after thinking about it for only another second, he agreed. He moved over to my side of the table, he looked at me, put his hand to his forehead, pretended to wipe it and said “Phew!”

It was a simple fix, but I was so proud of him for keeping himself under control. Yes, he shook his fists and clenched his teeth, but he did not make a sound, he did not yell, he did not lose control. He found his own way to let me know he was having a problem and he let me help him to correct it. I’m sure the people in the booth didn’t even know anything was happening. I praised him over and over again for keeping himself in control and letting Mom know there was something wrong and letting me help him.

I also took it as an opportunity to explain to him that when he sometimes gets loud in a restaurant that this might be how the other people feel; this is why I always ask him to try to keep his voice down. I’m really not sure if he understood the connection, but I have to try to make it, when the opportunity presents itself.

He went on to enjoy his fried chicken, cheeseburger, fries and coke in the seafood restaurant without incident and in a much better mood for shopping and bookstore visits to come later.

(this post was written entirely on my phone, please excuse any typos and run on sentences)

Mother’s Day update

Posted by TakingItAStepAtATime

I just had to write an update to my Mother’s Day Post from yesterday, “Mother’s Day and The Macaroni Necklace”.

DC loves to draw and he does draw quite a few pictures for me. His favorite subjects are flowers, cakes and once in a while, pizza. He draws pictures for me for no reason at times but usually his “Flowers for Mom” drawings are reserved for the times he thinks he is in trouble and the times he IS in trouble. When you see “Flowers for Mom” pictures laying about when you walk into my house, chances are DC is in trouble for something. He never draws for a holiday or birthday, unless it is suggested to him.

Less than 12 hours after I wrote..

“His mind still doesn’t go to “Hey let’s make Mom a card or a gift for Mother’s Day”, DC woke up and the very first thing out of his mouth was, “Happy Mother’s Day, Mom!”.

We went to the kitchen and I started making coffee, I turned around and there was DC at the table drawing.

He stopped when he saw me look at him as if I wasn’t supposed to see; “Sorry, Buddy, I won’t look”, and he continued on.

A few minutes later he presented me with this picture, with no prompting and no one to tell him it what a good idea it might be!

Happy Mother’s Day!

Less than 12 hours after I wrote…..

Such a difference from the boy who didn’t know it was a holiday or didn’t know that he should give me the gift that he made in school sitting in his back- pack to the “man” who just can’t wait to make me happy with his gift!”

there was more…………….

Happy Mother’s Day!

Mother’s Day and The Macaroni Necklace

Posted by TakingItAStepAtATime

Macaroni

My only Mother’s Day gift wish when DC was little was a macaroni necklace. You know, the macaroni necklace that every child makes for their mother eventually, for some occasion or holiday or for no reason at all. I think I remember making a few of my own when I was a kid. I really wanted a macaroni necklace! Unfortunately, there was no one that was going to help him do this, with the exception of me, of course, but that would not be the same. In other families if there was not another parent or sibling to make the suggestion and help with the project, eventually the child got old enough to come up with the idea as we all did when we were young, on his own. I knew that this was also something that was not going to happen in the foreseeable future, at least.

I know it was an odd thing to be fixated on, with so many other things to worry about, but it really made me sad that my son was never going to make and present me with a macaroni necklace. I talked about it all of the time. Whenever my birthday or a holiday came around, my friends would have to listen to me whine about the fact that I would never have that cherished macaroni necklace. In my mind it was the “right of passage” of parenthood.

Now, yes of course I realize that this necklace that I wanted so badly was just a representation of the many ways our life was and would continue to be so very different from the way I had imagined when he was born.
I know that very few people end up with the life they imagine, but I knew ours would be very different.

DC was in school, but at this point in time, they really hadn’t done many of the “school gift” projects that most children come home with around the holidays ~ probably because the projects would not make it home in one piece ~ therefore my hopes for a macaroni necklace were dwindling.

One day, the Friday before Mother’s Day, when DC was 6 or 7, I opened his back pack and found a package labeled “Mom”. I called DC over and asked if this was for me. He signed “Yes”.

I opened it and there it was, a macaroni necklace! Made with HEART SHAPED macaroni, no less. Also included was a photo of DC and his aide stringing the pasta.

This was absolutely THE best Mother’s Day gift! Of course, he didn’t really understand that he had to give it to me, I had to find it in his back pack, and of course the writing wasn’t his, but there was photographic evidence that he had made it himself!

I wore it all day on Mother’s Day and to work on the Monday after Mother’s Day. He seemed to be very pleased that I was wearing it!

My office mates were happy too, believe me….. I specifically remember one saying “Thank God you finally got that macaroni necklace, I was about to make one myself!”

Now-a days DC is no longer oblivious to holidays. He knows when they are coming, he knows what they are about for the most part. His mind still doesn’t go to “Hey let’s make Mom a card or a gift for Mother’s Day”, but he now has some help for that. But he does remember to give them to me, usually early because he is too excited and can not wait. He does make the connection with the holiday and the gift and he is very, very proud of himself when he gives me a gift. Such a difference from the boy who didn’t know it was a holiday or to know that he should give me the gift he made at school sitting in his back-pack to the “man” who just can’t wait to make me happy with his gift!

There is nothing that makes me happier than seeing him proud of what he’s done and accomplished.

So, Happy Mother’s Day!

May your jewelry box runneth over with pasta and your day be filled with joy!

“Please allow me to introduce…..”

Posted by TakingItAStepAtATime

(This post probably qualifies as more of a facebook status, but it made me laugh, so a blog it is!)

Pleased to meet you

DC loves to make introductions. I don’t believe he really understands the point of introducing people. He notices people making introductions in the movies he watches and in the books that he reads. It doesn’t matter if the people he is introducing already know each other. It doesn’t matter if he knows they already know each other, when he gets to urge to make introductions, he does. He is usually very formal about it as well –

“I would like to introduce my mother, Vickie Lastname”

“It is my pleasure to introduce to you, my mother, Vickie Lastname“

or (my favorite)

“Please allow me to introduce my ‘lov-er-ly’ mother, Vickie Lastname“

Recently we attended a pasta dinner fundraiser to benefit the summer camp DC has attended since he was 5 years old. We purchased enough tickets for DC, Doug, my mother and myself and we sold a few more to friends and family members.

Seated with DC and I were,

– My mother (DC’s grandmother)

– Doug (who was also pulling DJ duty)

– DC’s grandparents on his Dad’s side

– DC’s Dad – Tracy

– DC’s stepmother (I generally do not use the stepmother title to describe her because DC is so very much into Disney that there is no explaining to him that all stepmothers are not evil) Karr-ee-anna – in DC-speak

-DC’s Aunt K

-Her husband R

– My friend Tonya

– and DC’s friend, Salli

Due to the crowd, Doug’s father and sister had moved over to the next table.

DC was very excited that everyone was there at the same time. He sat at the table as if he were “holding court”. He then decided that introductions were in order.

Turning his attention to his father, Tracy:

“Tracy, this is my mother Vickie Lastname”

and

“Vickie, I would like to introduce you to my father, Tracy (same) Lastname”

~ Insert Dramatic Pause ~

“Um…….”

“we’ve met”……………………..

Dc and Friends Dancing the night away! Photo Credit: “Tonya”

Don’t Forget to Call Mom

Posted by TakingItAStepAtATime

Don’t forget to call Mom

There are many times, even at this point that I really do not know if DC really understands certain things or if he is just going through the motions; the motions that were taught to him. There are other times that I am surprised to find that he really does understand, even if he is using one of his scripts to communicate it. It is not always easy to tell the difference. I don’t think it will ever be easy, but I do not think that using the telephone will ever be one of those things he completely understands.

I have worked long and hard over the years but DC still has a hard time using the telephone. To begin with, he just doesn’t like it, he doesn’t. When he was younger, he couldn’t even bear to have the receiver on or near his ear. He has always had a very low tolerance for anything having to do with his ears, so using the telephone or just listening to someone that wanted to say hello to him was just unbearable for him.

Secondly, as I stated above, I really do not think he understands it completely. If he dials incorrectly, he doesn’t understand that he should hang up and dial again, he just keeps dialing. I finally got him to the point where he could tolerate the phone on his ear. He has memorized our phone number, but as he doesn’t always understand the question “What is your phone number”, I don’t know if he would be able to give it to anyone if he needed to. He does know how to call me.

He is still not all that thrilled about using the telephone, though. If he does get a call, it has to be brief. When he’s had enough, he will say nothing and just hand me the phone. I have to tell the party on the other end (who is usually still talking to him, not knowing he’s passed off the call to me) that DC is done talking. Not very long ago when he was talking to his father, he handed me the phone when he decided he was finished, as usual. I handed it back to him and said “DC, you have to say good-bye to people on the phone when you are finished.”

He took the receiver back and said “Goodbye to the people”

He does have an iPhone now. He knows how to use it. He is very good at using iTunes and YouTube, but still the phone part of it is difficult. He is supposed to call me on my cell phone when his transportation arrives to pick him up from work; he does, but it is a script.

“Hello Mom”

“Hi, DC. What are you doing?”

“I am going home Nowwww”

He says this the same way in the same tone, with the same emphasis on the “Ow” in “now” – every day.

“Did you have a good day?”

“Great”

“Okay, call me when you get home”

“Okay”

When he gets home he is supposed to call me from the house phone because I want him to know how to DIAL my phone and memorize my cell number as well.

He does call just about everyday. There were and still are a few days that he forgets and I have to call him. Hearing the phone ring, must remind him he has forgotten to call me so instead of just answering the phone, he picks it up and dials my number while I am on the phone, and then goes though his “at home” script. If for some reason it is not me calling him, the person on the other end gets the script and then he hangs up.

“Hi, Mom I am home”
“Hi DC, is Mrs. H there?” (she has already texted me to let me know she is there)
“Yes”
“What are you going to do today?”
“Go to ____” (enter, Library, Track or whatever activity depending on what day of the week it is)
“That sounds like fun. Okay, I will see you in a little while”
“Okay, Goodbye Mom.”

He does not understand voicemail or answering machines, even though I let him listen to mine and try to explain what it is, I just can’t seem to come up with an explanation that he can understand. If he does leave a message on my phone, I don’t think he realizes he is leaving a message, he just goes through his script and hangs up, thinking I must not have a lot to say that day???

He will not use the phone spontaneously. This is something I really want him to understand. I want him to think to call me if something is wrong or if he happens to get lost or for any reason at all. I want it to occur to him if something goes wrong, that he should use his phone. I really am not sure that it would occur to him. I’ve gone over this many times, but as many times as he says he understands, I don’t think he does. He has never called anybody spontaneously, he has just about never asked to call anyone. After all this time, he still only uses the telephone when he is told to, to call me from his transportation and to call me when he gets home.

We’ll keep working on it….

A few days ago, I had to leave work early for a dental appointment and then a doctor appointment. The appointments went quickly, so I was home before his aide arrived to meet him after work. He called me from the car as usual. When he arrived home both his aide and I were there. I was talking to Mrs. H in the kitchen. DC came in, he said hello to me and Mrs. H and gave me a hug.

Mrs. H and I were still talking in the kitchen, while DC went into the living room, I thought to have his snack “alone” (he likes to be alone when he has his snack). My cell phone, which was charging right in front of the phone in the living room, started to ring and I said “I’ll bet he’s calling me”.

From the kitchen, I asked:

“DC, what are you doing?”

“Hi, Mom. I’m home” (from the living room talking into the phone, probably to my voicemail).

When he is doing what he was told to do, I try not to do anything to throw him off or make him forget to call me the next time, so I went with it.

“Is Mrs. H. there?”

“Yes”

“What are you going to do today?”

“Go to the Li-ber-ary”

“Okay, I’ll see you in a minute”

“Okay, Mom, see you later!” and he came back into the kitchen.

Yes, Rule – followed……

but there is still some work to do………………….

Pants on Fire

Posted by TakingItAStepAtATime

Pants on Fire

We have heard a lot about RESPECT, AWARENESS and UNDERSTANDING over the past few weeks (End the r-word) and we will hear quite a bit more next month during Autism Awareness Month.

There are times when, we, as parents of children or adults with special needs, do have to go to extremes or try many different tactics to get information from our children. Communication is not easy with my son. He can/will tell me what he wants but anything else is difficult. An answer to a simple question, if I can get an answer at all, can take a good long time and a lot of work.

But….We do not “trick” and we do not lie.

Having said that, when I drop DC off at an activity or event, I do have to tell him verbally and in sign that I am going for ‘coffee’. For some reason, and I really have not been able to figure out why, he knows this means and I am coming back to pick him up. I consider this a “little white lie” , not a big deal. 90% of the time, coffee will be involved in whatever I am doing or wherever I am going.
If I tell him I am going home, or to the store, my departure is prolonged by :
“Mom is coming back?”
Yes, DC.
“Mom is never coming back”
Of course I am coming back, DC.
As I start to walk out of the door, he moves on to – “Mom, come here please”
…………………….and the whole process begins again.
For some reason he accepts ‘going to get coffee’ and it is all good.
For the record, in case anyone thinks he’s been traumatized at some point by being left somewhere……. I have never forgotten to pick him up, I have never even been late to pick him up from anything at anytime, so I really don’t know where this comes from, but ‘coffee’ seems to be okay with him. Why I have to use the ‘coffee’ sign is just another mystery.
This sort of thing, which actually makes him feel better, and is not hurting him or anyone else, is fine with me. I don’t really consider it a lie and it is certainly not a trick.

A few weeks ago, a friend and I were having lunch in a restaurant that is staffed by special needs adults. They do, of course have supervisors, but the wait staff and kitchen staff are all adults with various special needs.
This particular day, my friend and I were sitting at the farthest corner of the restaurant.
I am a “people watcher” by nature, but if the following exchange could be heard in detail by us, sitting so far away, it was without a doubt, heard by the customers sitting closer to the front.

I noticed a staff member approach the restaurant supervisor, who had been eating at her desk since we arrived, with some sort of candy/food wrapper. I really didn’t hear what the first staff member said to the supervisor, but the supervisor replied, “I don’t know who was just in the bathroom”. So again, being a parent of a special needs child and having quite a few friends with special needs children, I surmised from this (loud) statement that someone was sneaking food in the bathroom.
I get this, I get how this could be a concern. Did it have to be announced? No, but I do get it.
I continued to watch because, still eating with one hand, she picked up the wrapper in a scissor hold (between her index and middle finger), lifted it up into the air over her head and turned it side to side as if she was looking for finger prints or something. The production she was making was kind of funny and way over the top. It was without a doubt entertaining, anyway. I assumed that was the end of it, but what followed was not funny or entertaining at all.

She put her food down, got up from her desk and went over to the counter that looks into the kitchen area. She raised this wrapper over her head (still in the scissor hold) and asked, “Who left this wrapper out here” (Not “Who left this wrapper in the bathroom”).
I could hear a few employees answer, “Not Me”, “It wasn’t me”.
She then said, “I just wanted to know where I can get these”. Her assistant joined in by saying “They look so good, they have raisins and ___, (I couldn’t hear the other ingredient she mentioned) we just want to know where we can get them”.

At this point I could hear someone reply. I could not hear what they said, but someone did reply.
The supervisor then asked “Did you buy them yourself or did your mother buy them for you?”
I heard the employee reply that her mother bought them.

As they walked away from the counter, proud of themselves for tricking the employee into confessing by taking full advantage of her disability, the Assistant said, “I knew it was her” – the Supervisor replied, “Of course it was, she didn’t say a word when I asked who left it”.

Again – far side of the restaurant – we heard all of it.

RESPECT, UNDERSTANDING, AWARENESS, TRUST and let us add CONFIDENTIALITY???? What do we do when the people entrusted to care for and work with our children do not seem to know the meaning of any of those words?

Apparently, we still have so much more work to do.

(Just as an FYI, Normally I would have said something to her, her supervisor or both right away, but I was 95% sure that the person they were tricking into confessing was the son of a friend of mine. I wanted to tell my friend the story before giving the manager a heads-up and a chance to come up with a different version.)

****

Tales from the Day Program – ALL

The things we know…. and the things we don’t

Posted by TakingItAStepAtATime

Just 5 minutes inside his head.

My friend Peg and I have often discussed just how fantastic it would be if we could just get inside our kids’ head for five minutes! That is all we wanted, 5 minutes…. 5 minutes just to see what is really going on in there.

We never really know, we may think we do, but we really, really don’t.

As much as I think I know my son like the back of my hand, there are still times when I realize I do not know anything at all.

For example, during his 3rd year of swimming with Special Olympics, his coach yelled over to me one day at practice “He just figured out he can open his eyes with the goggles on!” – At that point in time, he’d been wearing the goggles for practice twice a week and during competitions for as I said, 3 years. It never occurred to me or anyone else for that matter that he didn’t know he could open his eyes while wearing them. I suppose, that knowing him as I think I do, it should have, but – no, it did not.

I am relatively sure he does not understand “death”. Other than Bambi’s mother and Old Yeller (who was quickly replaced at the end), none of his favorite Disney characters ever die, really. If they do – it doesn’t last. Someone kisses them, or a spell is cast and there they are, good as new. I try to talk to him about death, due to my “dropping dead” obsession and because everyone dies eventually. I never want him to think I just left him, but I really can not say that he understands it at all.

DC seems to live in the present. Things change and he just changes with them. I had a conversation with my friend, Toni a while back. Her daughter can watch something like Full House and relate it to her own life – high school, college, get a job, buy a car, get married, and have children. DC watches but does not relate any of this to his own life. He went to high school because I sent him. He moved on to “college” because I sent him and so on. I tell him what to do and he does it. I have tried to have conversations with him about what he thinks should come next in his life, but these conversations just tend to go to “dinner” or whatever meal or activity may be coming up. His future is not a concept he can grasp. He lives in the present and doesn’t seem to think about anything changing in his life, things just change and he just goes with it.

So the other night DC was on a ‘picture drawing’ roll – Flowers for Mom, Hearts for Mom, Birthday Cake for Mom and then this…..

Wedding Cake ? For Mom?

Needless to say I was a little bit thrown. DC’s Dad and I divorced when DC was 3. At the time, I didn’t try to explain it to him, I was too busy trying to get him diagnosed. It didn’t seem to faze him, he still saw his Dad every week and I was sure he would not understand any attempt I could make at explaining it to him. He never seemed to think anything of it. As marriage is something I never had or have any desire to do again, it is not something we ever talked about. Other than adding “Baby for Mom” to his Christmas list a few years ago, I never really had any indication that he might realize that things may be different here than at his friends’ homes. I am still not sure that he does. It has always been this way – it is what he is used to.
Most of his friends do have parents that are together and they also have brothers and sisters. But I still do not think he relates that to his own life. But again, every time I think I have him figured out he does something like presenting me with a drawing of a three layer wedding cake specifically for “Mom” and he has me guessing all over again.

That five minutes in his head, would come in very handy right now, but since I can’t have that, I am going to assume that he just really loves Wedding Cake and he just wants to share with his Mom………….

Literally Speaking

Posted by TakingItAStepAtATime

Raining Cats and Dogs

Twelve years ago, I wrote this:

“You can NEVER be too specific:

While learning “grocery shopping” in the classroom; his plastic cart full of plastic food… he was told that it was time to “put everything on the counter to pay” – Instead of taking the food out of the cart, he lifted the entire cart onto the counter!”

And

“When you tell your child to pull his sweat pants down over his socks and he proceeds to PULL HIS PANTS DOWN from the waist to his ankles – You know you were not specific enough with your request.”

And a few years later, this:

My son loves to write little “stories” (he thinks they are stories, but they are usually just one line).

I had been home from work for a few days with the “Flu”. It really didn’t occur to me that he had no idea what the “Flu” was and I wondered why he would laugh each time I mentioned it. He decided he would write one of his one-line “stories” for me to make me feel better ……

“Mom was so high”

It took me a few minutes…… but then I realized he thought I “Flew”

Then there was the time I said “Now listen closely” and he stuck his face one inch from mine…..
He laughed for about a week after I told him it was time to “hit the road”.
Or.. after the third round of kids whacked the piñata at his camp Halloween party, the Director said “Okay, DC, lets’ see you to tear it up” – he yanked it down and ripped it apart with his hands.

Tear it up

There are so many other examples, but these few really stick in my head.

Needless to say, like many people with autism, DC takes everything literally. Over the years, I have gotten much better at recognizing when something is said or read that taken literally will not make much sense to him. I always try to stop and explain what it means in that context, whether he asks or not.

He has made a great deal of progress in that area as well. He knows that the “flu” does not mean “flying”. He gets that “hit the road” means we have to get going. But he knows these things because they were explained to him, he is not able just figure it out himself – how could he?

Knowing this about my son, I suppose, when I told him to “walk slowly” on the sidewalk just in case there was ice (there wasn’t), I should have expected this:

Dear Abby – Feeling Chastised in New England

Posted by TakingItAStepAtATime

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 the part of his autism that will keep him from being safe and out of danger.

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.

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)

Posted by TakingItAStepAtATime

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.

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

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!

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.