Progress with a Side of Pasta

Progress with a side of Pasta

Looking back over the past year, I can honestly say that it has been a very good and productive year.

DC completed his first full year of “work”. He transitioned into it very well. Me? I am the one still having a problem calling it “work” and not “school”, the “car” is here, instead of the “bus”. I panic each time a school vacation comes along because I have to make plans for DC while I’m working, until I realize he doesn’t get those weeks off anymore; he’s working. The transition seems to be much more difficult for me than it was for him.

Volunteer “Dream Job”

My “Broadway Baby” also has a volunteer job as a Greeter at a local theater, with a job coach of course. He loves it and does well. The shifts are long, but he makes it through and he is happy when he gets home. How many of us can say we have our Dream Job? DC has his.

Because of his “theater experience” he was asked to help his camp by passing out programs at the annual “Thank You to Our Civic Groups” picnic. Unfortunately, the promise of cheeseburgers after he was finished totally distracted him while he was supposed to be working, so we will write that one off as a “trial run” and I will know how to better explain the process to him next year.

Communication-wise, I’ve noticed that I am doing much less prompting to get him to respond to a greeting and many times he will initiate a greeting himself; although “Hello Old Lady” isn’t exactly in my top ten, he DID initiate the conversation himself. He was also able to tell me a couple of times, in his own way, but in a way that I was able to figure out, that he wasn’t feeling well.

He has been asking to do more things “All by myself”, like making his lunch for ~~school~~ work, his breakfast, making his bed and shaving. “All by myself” means he doesn’t even want me in the room (a good thing with the shaving……. I make him nervous – me?- “Mom, are you still here?”).

This year we skipped our annual Halloween trip to either Salem or Sleepy Hollow and decided to go to New York ComicCon. To say it was crowded is an understatement. He did well. Yes, he was anxious, but he controlled himself as best he could. Mike TeeVee came at the perfect moment. DC was getting anxious so we were on our way off the show floor because I could see he was getting upset. We happened upon “Mr. TeeVee” on the way. No line, as I don’t think anyone realized he was there yet. He was very nice and was able to spend some extra time with DC. DC calmed down right away.

He waited in line for an HOUR and A HALF to see the love of his life, Felicia Day. Do you remember when your kids were little? When they would finally eat or do something that they never would before and you were afraid to even look at them for fear they would stop? This is exactly how I felt standing in that line with him. I don’t think I was even breathing. Fortunately she came out early and we were relatively close to the front of the line, so I knew we were “home free” at that point. He was excited when she came out but then he turned to me and said “I am very nervous about this”. He has used the word “nervous” up to this point only when there was a storm, never about meeting anyone. I think he realized right then and there that the people he sees on TV or in the movies are real people AND that this person, that he adores, is someone special.

Penny’s Frozen Yogurt

We made it to the front, I could breathe again. She was lovely to him. It made his day.

He was also able to meet William Shatner. He does know who that is due to his mother (me). He was very nice to him as well but “no pictures please”. We did forget to tell him that DC was born on his birthday; maybe that would have rated us a picture –but live and learn.

His Uncle asked him to sing Edelweiss at the table on Christmas Eve. DC is, and always has been, a ham so I was surprised that he sang the song, looking only at me and then buried his head in my arm when he was finished. Bashful! Embarrassed! I don’t know if this is a good thing or not, BUT, it IS a new reaction and a new emotion so I will add this to the Plus Column as well.

There is so much more I can say about this year, but my point is, DC is 22, he continues to make progress. No, not in leaps and bounds as he did when he was younger, but it is there.

No matter what the age, there is always progress to be made. It may not even be noticeable right away, but it is there.

And, Oh……. On New Year’s Eve, Eve, two days before the year ended, he actually ate pasta. PASTA!

Happy New Year!

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…….

Don’t Judge What You Don’t Understand

Posted by TakingItAStepAtATime

There is a convenience store in our town that my son and I stop in pretty regularly. The employees are very nice to him. One in particular seems to be very interested in him and his diagnosis and really goes out of his way to try to talk with him.

A few weeks back, there weren’t many customers so he began asking questions about him. I never mind when people ask questions; I’d rather they ask than stare or shy away from him.

One thing led to another and he began to tell me that they do not have the system that we have in his country. In his country the families take care of their disabled children. He proceeded to say (which I’m sure he thought was a compliment) that I take care of my son, but other customers who come in with disabled children and adults ask for receipts for what they are buying.

I really didn’t understand at first what one thing had to do with the other but he explained – “I ask them why they need a receipt and they tell me it is for the child/adult’s father or some company”.

In the first place, why would he ask anyone why they needed a receipt? And then why would anyone feel obligated to answer that question?

He proceeded to tell me again that, in his country, the families take care of their own children. He automatically made the assumption that if someone else is with your child, a staff person, or a person from a group home that the parents are not taking care of their own children!

Immediately the pointing finger came out (I really have to learn to control the “finger wagging”) and I said “Oh, no. Do not judge people because someone else happens to be with their child at that time!”

I tried to explain to him that, in my case, my son has been with me and I have done just about everything for him all of his life but now I too have staff people with him a couple of hours every day after he gets home from work because he needs to learn to be independent from me. I don’t like it at all, but I know it’s the best thing for him. I’m always convinced that I am the biggest detriment to his independence.

Unfortunately, I didn’t get to finish my speech as customers were coming in and I could see that he was getting uncomfortable because he thought he’d offended me, which he did. When people make those kinds of assumptions whether it be about me or not, I DO take offence. I suppose I just could have let him believe that I was not one of those “awful” people pawning their child off on someone else; he would never know any different, but I just couldn’t let it go.

Partially, I think I react that way because I DO feel guilty when I am not with him. All I was looking for when all of this began was some type of program after school so I didn’t have to continue cutting my hours at work to make it home before he arrived from school. I’ve been a single mother for nearly 20 years, and I have to work; fulltime, always have, it’s only me supporting us. What I ended up with was staff hours for life skills, community, and activities. And yes, I know it’s the best thing for him, but after 3 years with this staff (they are wonderful, don’t get me wrong), I still feel guilty. His staff is only here from 3pm – 5pm, and then they accompany him to some night activities as well – activities that I would normally have taken him to. But, I feel like I’m being judged by people, my neighbors that weren’t living here all of the years that it was just me and just people in general who have no idea what this is all about, like the man in the store.

I wanted to ask the cashier just what happens to the children is his country when the families are gone or too old to take care of these children? They’ve been sheltered all of their lives, what becomes of them? How to they adjust to having no one? I don’t know anything about his country, I don’t even know what country he is from, but I feel that here, at least in this house, we are not trying to shelter our kids by just keeping them safe and out of the way and never learning or experiencing life, the best life they can have. I am hoping to help him become as independent as he can be and if that means letting someone else take the reins for a couple of hours a day, then that’s what I am going to do.

I know he’s not a bad person and I was sorry I made him feel uncomfortable, but I am really hoping to finish this conversation one day and hopefully make him see that he should not judge what he does not understand and maybe even change the way he perceives “these parents” (myself included)…… ……….

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

Posted by TakingItAStepAtATime

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

Every summer he was able to attend 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. When I started looking at programs for him I was shocked that they didn’t get 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’s aged out of Challengers baseball. Seventeen years of baseball….over. No more February vacations, Spring Vacations or Summer vacations. He’s “working” now, with 3 weeks’ vacation, holidays and some sick days, 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. Becoming an Adult may actually be harder on me that it is on him. It’s 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’s 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’s 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’s 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………