Sometimes “I told you so” is just good for the soul

DC in Uniform – Challengers Baseball

DC played baseball with the *Challengers League from the time he was 5 until he aged out last year at 21.

The “official” Challengers field in town is located in front of the school he attended for Birth to 3, Early Intervention and Kindergarten. Needless to say he was in this building and with many of the same teachers for a good 4 or 5 years.

I’ve had my battles with the school system over the years, but none so on-going as the need for speech therapy. This battle began in Early Intervention and continued on straight into High School.

Sign Language, I believed was absolutely necessary, thanks to my sister in-law, Lisa who convinced me that sign would not prevent him from speaking if he had the capability to eventually speak. It might lessen his frustration level at not being able to communicate (it did). But sign was not, in my mind ‘Speech Therapy” and should not be considered as part of the Speech Therapy hours listed in his IEP. Speech Therapy in a group setting also should not be counted as his speech therapy. Yes, he did need to learn to be able to focus in a group setting, but focusing in a group setting is not speech therapy, it is learning to focus in a group setting.

I can’t tell you how many of these teachers told me he would never speak. One speech therapist, Barbara, actually told me that I was obsessed with DC speaking and “You know, if he isn’t talking by now, he probably isn’t going to”. He was 5 at the time.

They went so far as to schedule and pay for an evaluation at a well known Medical Center to have him evaluated for a **“Talking Board”. I went to this evaluation, never intending for him to use a Talking Board, but to use the evaluation as proof he was capable of speech. As it turns out, this is exactly what the Doctor doing the evaluating said; he did not recommend the Talking Board and noted this in his report.

I didn’t give up on my battle with the school system, but I also didn’t want to waste any more time getting him the speech therapy he needed, I went out and got other speech evaluations and hired a private speech therapist. Liza was wonderful and made a great deal of progress with him. She was with him for many years. Armed with the evaluations and his progress, I was finally able to prove this to school system – Quite the Catch 22, he had to speak before they would agree to one on one speech therapy! Unfortunately it took a few years to get to this point with them; years that would have been wasted if he were not receiving the private speech therapy.

But back to baseball…….

Our league used a PA system and we always had a volunteer to announce the games. Each game was opened with the Pledge of Allegiance.

When I was President of the league, I decided that every player should have a chance to be in the spotlight. Each week two players were assigned as team captains and another player was assigned to do whatever they were capable of doing on the microphone.

Some led the pledge; some sang a patriotic song or just yelled “Play Ball!” If they were not verbal, they stood at attention at the Flag or threw out the first pitch.

Our games were played on Saturday mornings and Wednesday evenings. DC was about 10 years old and on this particular Wednesday when he was scheduled to be in the spotlight. Coincidently all of the teachers from the Early Intervention Program had been attending a meeting at the school after hours and decided to come down to watch the game before heading home. Most of the players had been their students at one time or another.

Many of them had not seen DC in about 4 years. Just imagine the feeling I had to see DC to go to the mic and sing “America the Beautiful” as clear as a bell with all of those “professionals” who years earlier told me he would never speak, sitting right there in the stands! I could not have PLANNED this if I tried!

Sometimes an “I told you so” is just good for the soul, even if you don’t have to

actually say it out loud.

*Challengers Baseball is a division of Little League for children with physical and intellectual disabilities

**”Talking Board” I don’t know what they might be called these days, but that is what they were called back in the 90’s.

A VERSION OF THIS POST WAS PUBLISHED ON THE MIGHTY – “They Told Me He’d Never Speak. Then They Heard Him Sing”

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)…… ……….

“Maybe” is not a word

Posted by TakingItAStepAtATime

I don’t think there’s any more that needs to be said here…..

“Happy?” – “Sorry” – What’s next?

Posted by TakingItAStepAtATime

Yes, John Lithgow is “Happy”

Years ago, DC and I were out doing errands. We had to have stopped at 3 or 4 different stores, which at the time was very difficult for him. By the time we got to the Health Food store, he was so out of control that the cashier saw fit to stop the line to try to educate me about just what vitamins, etc. I should be giving him to combat his ADD – (Holding up a line of customers to give me advice in front of all those customers, was just what I needed). I informed him that my son had autism, not ADD, but thank you very much!

On the way out, I said “I am not very happy today”. That one single comment led to years of DC asking everyone if they were happy. He did not have many “words” under his belt at the time, but he did manage to ask everyone he met if they were “Happy?” (Can you say “guilt”?)

* We have an autograph on a golf card from John Lithgow making it clear to DC, that yes, he is “happy” (see photo).

Eventually he stopped asking people if they were happy and the “Happy” question was replaced with “sorry”. I am sure this is my fault as well. Somewhere along the line I must have told him to say he was sorry for something and there it began.

He is sorry for absolutely everything! Partially because he believes an “I’m sorry” will get him out of anything. (**warning; slight “man-bash” ahead). Like a typical man, he thinks that saying “I’m sorry” even when he doesn’t know what he is sorry about will get him out of anything or at least get me to stop talking. When he really wants to bring it home he will move on to: “I’m ‘ter-bly’ sorry” or “I am soooooo sorry”. He will even throw in a “Can you ever forgive me?” (movie line) when he really thinks it is necessary.

He says he is sorry, WHILE he’s doing something he shouldn’t, and will continue right on doing whatever it is because he is covered, he already said he was sorry. Or he will say he is sorry when he is about to do something he knows he shouldn’t. He is covered- he already said he was sorry!

He says he is sorry when he asks a question and the answer happens to be “no”. In his mind, “no” is a negative even when it is just an answer to a question. I have tried to explain all of this to him but as much as I try to simplify there are just some things he will never understand.

Don’t get the wrong impression; he is not upset or anxious when he says he is sorry. It is just a word to him. He does not constantly think he’s in trouble. It is just something for him to say….. over and over again.

A few days ago he somehow figured out from one of his books that the word “Sympathy” in a way means “sorry”. So on that day, DC was “in sympathy” for sneaking chips.

I think I might like that better.

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………

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.