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

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………

Let’s Remember to Look at Both Sides of the Coin

Posted by TakingItAStepAtATime

(Update: April 2, 2015 apparently, when I changed this post from Private back to Public, it reposted as new. Although I do not support Autism Speaks any longer, I would never begrudge anyone that does. I do stand behind the rest of this post – it was a rant at the time, but I do stand behind it)

I received a little bit of abuse since posting my last blog, not about the “streak”** but because my streak supports Autism Speaks. I’m sure I’ll get some abuse from this post as well. I don’t like conflict. I certainly try not to cause conflict. I’ve been thinking about writing/not writing/writing this post for days, but it wasn’t going to stop bothering me until I did. I could receive all of the positive comments in the world, but unfortunately the comments that stay with me are few negatives.

I used the word “abuse” to describe this feedback because that is exactly what it was…. abuse. They weren’t opinions, or simple comments like “Hey, I disagree with you and here’s why”, they were out-and-out attacks. I value everyone’s’ opinion; it doesn’t mean I will agree, but I will listen. There is always that opportunity to learn something new or look at something in a different way. Most surprising, to me anyway, was that these comments came from people with autism.
The only usable sentence not dripping with expletives was “How can you support a charity that is trying to eradicate me? I am so sick of this.” This post is really not about a few negative comments, my skin is thicker than that, it’s more about the fact that I’ve seen this kind of reaction before. It makes parents feel bad for wanting to help their children.

I can make the assumption that these folks were able to read my post, understand it and comment on it. This alone puts them on an entirely different level of the *spectrum than my son. My son cannot do that. He will never be able to do that.
On one hand, I found it refreshing (if only for a minute) to come across people, any people, who actually like who they are. Isn’t that what all of the self-help books/TV shows/magazines, etc… tell us we all need to do, love ourselves? I don’t believe anyone should have to change what or who they are if they are happy with themselves. On the other hand, I could have lived without the hostility. If I thought Autism Speaks was rounding up everyone with Autism and forcing them to into treatments, obviously I would not be supporting them.

We all need to look at both sides of the story. I support the right to be who you are, but there are many children and adults with autism that need help, will never be able to take care of themselves, live on their own, much less comment on a blog. I’ve said it before; if I could live forever, I would not want to change a thing about my son. He’s the happiest “kid” around and a joy, but he has no siblings, no one really to care for him when I’m gone. This is what my nightmares are made of. This is what keeps me awake at night.

I’m not going to feel guilty for hoping for some sort of break- through so that I know his life without me will be just as happy and safe as it is with me. I do not want to eradicate anyone; I want what’s best for MY son.
I will continue to support any Autism charity I chose to support. I will continue to fight for my son.
If you’d like to have a rational conversation, I am perfectly willing to listen.

*Streak – #AutismStreaks – 100 day walking streak using the CharityMiles app.

Father’s Day is here….. once again

Posted by TakingItAStepAtATime

Here we are again; Father’s Day…….
Photos posted, gushing tributes to all of the wonderful Father’s out there.

There are no photos or gushing tributes on my page, there will never be. I can’t image what that would be like.

So be thankful if you have a Father or Step-Father that deserves those tributes and celebrations and consider yourself lucky.

Happy Father’s Day to all those deserving Fathers out there. To be loved and respected by your children a great gift. You’ve done something right!

Happy Father’s Day!

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

Posted by TakingItAStepAtATime

“Describe Your Child in 200 Words or Less”

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 someone that knows nothing about it or knows only what they’ve seen on TV, movies, or read in a few articles?

How do I 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 I 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 I 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 all of that 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 it will not give the full scope of what they are all about… individually. There is such a wide spectrum between “Rain Man” and the “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.