There’s No Place Like Home

I am fortunate that DC loves to travel. This was not always the case and for a time I believed we would never be able to go anywhere at all, especially by plane. But now he loves to go everywhere and anywhere.

As much as he loves to go away, he always knows when it’s time to go home. If he knows we are leaving on Tuesday, then we are leaving on Tuesday. If he was offered an extra day in Disney, he would not take it because he is going home on Tuesday. It’s not that he is not enjoying himself, he is. He just knows when it’s time to go home and he wants to go home.

Three years ago we took a trip to San Francisco. With the exception of the off season heat wave, the “salad dressing incident” (as it has come to be known by many of my friends), the evacuation of our hotel and an extremely frightening ride in a taxi, the trip went well.

Evacuating the hotel – San Francisco 2010

We had a great time!

Walking on the Golden Gate 2010

Saturday came and it was time to go home. We had a very late flight, so we spent the day seeing some last minute sights, dinner, and nap and off to the airport to catch our 12:30 am flight home.

Everything went smoothly; bags were checked in, we got through security quickly, we made it to the gate, got DC some snacks for the flight and waited to board.

It was about the time for the plane to begin boarding when the announcement came that the flight had been cancelled! Not delayed, cancelled, due to the crew’s “fatigue” ~ seriously that is exactly what they announced; the crew was fatigued and the flight was cancelled. The next flight out was not until 6:00 am the following morning. This was an already scheduled and sold flight, so chances were they would not be able to accommodate all of these people that just became stranded in the airport.

This was not going to be pretty; DC was ready to go home.

The conversation went like this:

DC the plane is not coming; we have to wait until tomorrow.

“Going home now”

“There’s no place like home”

No, Bud we have to wait until tomorrow, the plane is broken (I wasn’t going to try to explain “fatigued). Okay, we will go home tomorrow.

“Okay”

Pause……….

“Plane is cancelled, going home now. There’s no place like home”

Mom, going home now. No place like home. Plane is canceled, going home now, there’s no place like home.”

I tried to explain again and again, but as many times as he said “Okay” he went right back into “Going home now, there’s no place like home, plane is cancelled, going home now”

I gave up explaining and tried to ignore it, but he got right in my face and started to get loud “Going home now, there’s no place like home, plane is cancelled, going home now”

The gate was a zoo, with all of the passengers trying to book other flights home. I sat with DC while Doug was in line trying to get us on a flight. There was nothing else I could do for him. He wouldn’t take any explanation I could give him. It just wasn’t going to sink in.

Now I was also worrying about spending the night in the airport with him. I didn’t think it was going to be easy to get a room anywhere since the entire flight of people would be trying to get a room. We had already turned in the rental car and I was imagining us driving around all night in a cab looking for a hotel with an open room. Our bags were checked in earlier and we wouldn’t be getting those back tonight so we had nothing!

And DC was still going on and on……

At this point I saw that Doug had made it to the counter and was working to book a flight. DC was just going on and on so I decided I would share the “joy”. I took DC up to the counter and stood next to Doug.

DC went on and on…..

“Going home today, there’s no place like home, plane is cancelled. Mom! Going home today, there’s no place like home, plane is cancelled, going home today” louder and louder……..

The woman behind the counter looked up at me and said “Oh! I AM Soooooo SORRY!” as DC kept reciting his lines. He kept it up, I tried to explain over and over and he went right on. She apologized again and on he went.

She was finally able to book us a flight for the next day. And she also threw in a room free of charge (She may have been afraid she would have to listen to this the entire night – I think that “Sharing the Joy” may have paid off a bit……..)

And yes, in this case I agreed with DC… there is no place like home!

Wax Museum – San Francisco 2010

(We’re going to skip over the next battle in the room, with no luggage, when he refused to go to sleep because he had no PJ’s and one just doesn’t sleep In one’s clothes, you know)

“Penny” is in the house! NY Comic-Con

Posted by TakingItAStepAtATime

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)

*****

I picked the only panel I thought he would enjoy – the Once Upon a Time, panel. Even with the appearance of surprise guest “Emma” (Jennifer Morrison), DC fell asleep about 10 minutes into it – I tried….

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…

(update 2/2016: This was a post that I made private some time ago until I had the opportunity to edit a few of the photos of DC – I was reminded of it due to a conversation I had yesterday – My apologies if you have received an e-mail notification for a new post – it’s old)

“How Rude!”

Posted by TakingItAStepAtATime

Full House…. One of DC’s favorite TV shows. He especially enjoys Stephanie’s classic line; “How Rude!” It must be the delivery because DC really doesn’t have any notion of “rude” or what it means. He says what he says, the way it makes sense to him. He has no concept of what rudeness is.

Years ago, in the grocery store he wanted to get past someone, he just said, “Move”. I explained to him that this was rude and that he should say “excuse me”. And he did……. to every single person we passed in the store, every single one of them. He now knows not to tell anyone to “move” because I told him not to. He doesn’t understand why and just knows that it’s rude, not really knowing what “rude” means and not really being able to relate it to other things he does that can be seen as rude. It’s rude because Mom said so, period.

A few years ago, we were in Las Vegas. We were walking down the street and I was holding DC’s arm trying to navigate him through the hordes of people made worse by construction, on the sidewalks. He also has no awareness of what’s around him, in the sense for example, he will stand up in a restaurant to put his coat without looking around to see if he’s going to hit a waitress or a customer with his arms. He just doesn’t have the thought process to consider who might be around, who might be in the way, who he might knock over. He just does what he has to do. I was so preoccupied with making sure he wasn’t in anyone’s way, bumping into them or hitting anyone when the arms started flapping, that I didn’t notice the people out on the sidewalks handing out their “marketing materials”. I looked down and DC had a handful of business cards, all with photos of women on them. He wasn’t looking at them, he was taking them because they were handing them to him, and we always do what we are told. I took them and tossed them in the trash. I couldn’t just tell him not to take them. He wouldn’t know what to do when the next person tried to give him something, and that would result in a bit of a breakdown. Mom said not to, but they are still giving these to me. That sort of conflict in this head is never pretty. So I told him that if anyone else tries to hand him anything else, that he should be polite and just say “No, Thank you” and not take it.

In Vegas, the people handing out “literature” stand about 7 or 8 in a row and you run into another 7 or 8 of them every 10 feet. So DC, following the rules, proceeded to walk down the street, screaming “NO THANK YOU!” at each and every one of them, all the way down the street, the entire time we were there, anywhere we went.

That’s my boy! He IS NOT rude 🙂 I did manage to get him to lower his voice a bit as the days went on and he was very proud of himself for being so polite – even though he really doesn’t understand what that means either. It’s all still a work in progress………………….

Communication, Paper Towels and Other Nonsense

Posted by TakingItAStepAtATime

The battle for communication from the time DC was in the Birth to 3 Program has been a never-ending battle fought, for the most part, uphill.

When he was younger I asked – begged, someone – anyone; his teacher, his IA, anyone, to write at least one thing that he did that day that was specific to that day. I explained that I wanted him to understand the question “What did you do today” and to be able to have some sort of conversation whether it be in sign language (when he was young) or in just a few words (when he moved past sign and started using a small words). I just wanted him to understand the question and give me some sort of response.

If I couldn’t get a response, at least I could list a few things I KNEW that he did, hoping that this would get the point of “today” in his mind. If I listed things that I thought he may have done and he answered “yes” and then turned out he didn’t do those things, we were missing the point of learning to respond to “what did you do today”. He will give random answers, or answers that he gave before, even if they are not correct. So I needed to KNOW.

“Fine Day overall” – my all-time favorite, was not what I had in mind.

Now he’s in a day/work program. It took a long time to find this program (which was the blog I was going to write today). He works in their on-site Greenhouse which is open to the public. Communication is a little better about what he did that day, but other notes can be a little odd at times.

Judging from some of the notes I’ve received I really don’t think they understand him or the way his mind works.

“DC refused to do a job that was assigned to him today”.

Now…… I am not one of those “Not MY Child” or “My child would never do that”, I know what he would or wouldn’t do and my child would not do that! Upon further investigation I discovered that they were phrasing their assignment, for example; “DC do you want to empty the garbage?” Of course he is going to say “No”! Who wants to empty the garbage if given a choice? Phrasing it as a question is giving him a choice in his mind. He’s not refusing, he’s answering a question.

I’m not going to get into all of the notes, but it’s clear to me that they don’t understand Autism, which I find odd in a program for special needs adults.

Note from yesterday:

“DC, when given some directions – a job I guess he did not want to do, banged his hand on the water barrel.”

That’s it.

It’s difficult enough to talk to him about something after the fact, never mind without specifics.

What was the Job? Were there too many directions?

He can follow directions but it has to be a step or two at a time, otherwise he overloads, shuts down and won’t hear any of it. Something they should know at this point.

And then:

“DC has been using up paper towels at work. I told him it’s a rule – One Towel only when you wash your hands. I made a sign that says “Rule – One Towel” for him. If you have a suggestion, let me know”

(This about a kid who more times than not dries his hands on his pants)

I went to have lunch with DC hoping to speak with her, but she was not there.

After lunch DC had to use the rest room and I waited (1/4 of my life is spent waiting outside the Men’s Room :). He came out, went to the sink, washed his hands, took one paper towel and threw it away.

And then there was this:

DC Rule
1 Towel

They posted his NAME on the sign in a place of business that is open to the public!

As I was leaving, the assistant said “DC do you want to work in the garden with the boys?” – and DC said “no”……….. – (heavy sigh)

And how was your day?

****

The sign with his name on it and the question (again) instead of a directive were both addressed …. but we won’t get into that. The sign was taken up with the director later that day.

****

Tales from the Day Program – ALL

Does everything really need to be this difficult?

Posted by TakingItAStepAtATime

Please Note: The following is a rant, plain and simple; a rant, a vent, whatever you would like to call it. There is no moral to the story, no happy ending, no “Ah Ha” moment, no conclusions to be drawn (actually there are many conclusions to be drawn, but we won’t say them out loud) – just a plain and simple “I’ve had it” kind of rant.

For those of you who don’t have a child with special needs or have young children and haven’t had to think about the “adult” side of things, here’s how it works. I don’t know if it’s the same in every state, but this is the way it goes here.

When your child reaches the age of 18, depending on the severity of the disability (can he/she make decisions for themselves) the parent is required to apply for guardianship of their own child otherwise they will not have the ability to make decisions for that child. The state views them as adults, period, and this means they should be able to make their own decisions, medically, financially, etc. (Paperwork, Probate hearing)

Due to budget cuts right around the time DC was to about turn 18, anyone not covered under Title 19, lost their caseworker through Department of Developmental Services. DDS is where the funding comes from for their work/day programs after they leave the school system at 21.

This is the time in our children’s lives when you really need to have a caseworker. This is when you have to begin looking for a program for them when they leave school.

Before you can apply for Title 19, you first have to apply for Social Security (tons of paper work).

After you apply for Social Security, you can begin the application process for Title 19. I am fortunate that my case worker, Ruthie, at the time, was there to help with this. She came to my house and my friend who has a son the same age as DC, came over and we all did the paperwork together. If not for her, I would still be sitting in the same place trying to figure it all out.

Now we’re done, right? Wrong!

Every year I have to fill out the forms for Guardianship (when they come, sometimes they don’t) again – just to be sure DC is still disabled. Not a big deal, just annoying. But seriously, he has autism, it doesn’t go away.

There is an annual report for Social Security as well as an audit or two during the year “just because”. And….. now that he is in a work program and makes a tiny bit of money, I have to remember to call in during and only during the first 6 days of the month to report his wages for the previous month to Social Security, so they can reduce his monthly payment appropriately.

Also once a year we receive the annual Title 19 redetermination, which is basically as much paperwork as the original application. I’m not complaining, I can live with all of this, but it is a LOT of paperwork!

Complaining begins here:

Now, I may not look like the most organized person in the world, but I do get all of these things done, on time, always!

DC’s redetermination was due on July 20. On July 16^th I mailed a giant package with the application, the year’s worth of check stubs, his last bank statement and insurance cards – everything they asked for in the instructions. This was the fist time filling out a redetermination since he had begun working.

Done! PHEW!

Wrong again!

On Monday, August 26^th I received a letter from DSS that his benefits had been discontinued because I did not complete and return his redetermination! There was a form included so I could request a hearing. This form had to be completed and returned by August 30^{th –} in four days!

“Calm” was never and will never be a word used to describe me, so the next morning a dragged all of my “books” to work to recopy all 43 pages of his redetermination, because at this point I can’t think about anything else.

First, I decided to try to call the number (silly, yes I know). There was really no menu item that described this situation and no way to talk to a person, so I moved on to faxing the hearing notice and the copies of the redetermination to the number provided. The fax was cutting out and disconnecting and after I don’t know how many attempts, I gave up trying to fax it all.

Knowing this was going to take more than a fax at this point, I took my lunch break at 9am so I could copy all of these forms, check stubs, insurance cards and bank statements. I decided I would mail one copy to the local office and the other to the address that was on the hearing notice. Two more giant packages in the mail – Done!

I was not confident that either of these packages would ever be seen by anyone, as they never received the original and having only 3 days now to request a hearing, I found different phone # in all of my 3 ring binder records and tried again to call. Fortunately, I was able to put the call on speaker and do some work while I waited otherwise I’d be putting in for vacation time to finish all of this! Unfortunately, all of my co-workers had to listen to “Your wait time is…. more than 20 minutes” over and over again.

An HOUR and 9 MINUTES later (just a tad more than 20 minutes), an actual person picked up. I explained the situation as calmly as I could.

Her reply was: “Oh, we’ve put a new system into place where all the redeterminations go first to our scanning facility and are inputted into our system for us to work on. Because the system has been up and down and they are very backed up, we probably do have your original redetermination and we have extended everyone’s deadline to November 20^th. His benefits have not been cancelled.

Seriously? It may have been more effective to put THAT in the letter instead of telling me his benefits were cancelled and I only had 4 days to do something about it!

Those that know me can imagine where the conversation went from there, so I will spare all of you the details.

End result, she gave me her fax # and I faxed another 43 pages directly to her. She did explain that she is not the person that would be working on my son’s case, but I wanted them to go to SOMEBODY.

So at this point, there are 3 packages of my son’s information floating around somewhere and one more in the hands of this person who has nothing to do with my son’s case.

She also informed me (after receiving 43 pages) that they really only need the last 4 paystubs. Hmmmm….. Maybe the redetermination instructions could say that!

So….

They lost his original packet (but maybe not, we may never know)
You can’t talk to a person at the number they provide.
They mailed letters to clients telling them their benefits were cancelled. (The person I spoke with said they received 1500 calls that morning)
They extended the deadline without bothering to tell anyone (This would have been something to send a letter about –it may have gone a long way to reduce the amount of calls they received. And really, nobody at DSS found it odd that 1500 cases were being cancelled at the same time, due to non-completion of their redeterminations? – Somebody had to MAIL all of these letters!)
They sent a hearing notice to return by fax within 4 days with a fax number that clearly doesn’t work.
And I still don’t know if anybody that actually works on his case has his forms at this point.

I feel like there was nothing accomplished here and there was an enormous amount of wasted time on both sides.

I suppose I will be in the dark until I get my notice in November.

“Funny Friday”

Posted by TakingItAStepAtATime

“Monster”

For the two years after “Graduation” DC attended a transition program through the school system at a local college.

I was visiting the school for a class event, one Friday afternoon and his teacher, “Mr. Disney” (as DC calls him) excitedly came over to me and asked “Did you help him with his jokes today?” Not knowing what he was talking about, I said “No, what jokes?” One of the IA’s (“Para’s” to some of you) chimed in to tell me that he had told 3 jokes for “Funny Friday” that morning.

Mr. Disney went on to tell me that every Friday is “Funny Friday” and all of the students tell their favorite jokes at the morning meeting.

Okay…. Let’s pause here for a moment……

I don’t know how long (or if ever) it will take before anyone will understand that HE IS NOT GOING TO COME HOME AND TELL ME THESE THINGS! If someone else does not tell me, I am not going to know. If I had known about “Funny Friday” I would have helped him with some jokes, but unfortunately I was never told.

I was surprised that he actually TOLD a joke because DC’s idea of a joke – and it’s always the same – is:

“Ha, Ha, Ha! Funny Joke!”

Me: “What’s the joke, Bud?”

“Monster!”

(Insert “cricket” sound here – that is it)

They proceeded to tell me the jokes he told that morning. He told them properly complete with a bow and…. they were actually funny – real jokes!

“Why did Bo Peep pour chocolate on her sheep?”

“She wanted a chocolate BAAAAAAAAR”

“Why can’t Cinderella play Soccer?”

“Because she ran away from the ball”

“What do they call a Fairy that doesn’t take a bath for a month?”

“Stinker-Bell”

He told honest – to – goodness JOKES! After years of “Monster”, he actually told, not one joke, but three and UNDERSTOOD why they were funny!

Later, I ran into the Interim Dean of Health Sciences, of the college who couldn’t wait to tell me about the three jokes that DC shared that morning. Everyone was very impressed, to say the least!

Still I had no idea where he found these jokes.

About a week later, “Mr. Disney” finally got DC to tell him where he found his material.

Actually, he showed him……

After asking him all week, DC went to the computer, typed “Disney jokes” in the search engine and found a web-site full of Disney jokes.

He memorized them and had them ready for “Funny Friday”!

He was able to figure out on his own that “Monster” wasn’t cutting it for “Funny Friday” and he needed better jokes. He went about finding them himself, remembered them and had them ready for Friday!

“Monster” ?? Still his favorite joke.

(Graduation – I do not know what it is like everywhere else, but here school-age for SPED is 3 to 21 years old. DC “graduated” from the High School after spending 4 years there. Having two years left of school, after his senior year – the options were to let him stay at the High School or to have him outplaced into an appropriate transition program. Fortunately the town put together this transition program right before DC was ready to graduate.)

“This is mine” –just one more thing to file under “Things I should know by now”

Posted by TakingItAStepAtATime

“This is Mine”

Last week DC and I went out for frozen yogurt. Normally DC gets the “Bucket Size” with as many toppings as he can fit, hot fudge and whipped cream. I usually get the smaller size, no toppings and I throw mine on the scale quickly to see how much it weighs so I can track my points. I have to admit that most of the flavors all taste the same to me, but a treat is a treat especially if it works with point-tracking.

Earlier that day, I had French fries with lunch so I decided that my day was already blown – I might as well just go all out (yes, I can throw in the towel that easily – don’t judge).

DC likes his toppings but doesn’t understand that he can’t just keep heaping them on – they end up all over the counter. I taught him to put some on the bottom before he gets his yogurt, so that is what he does now. I took my own advice and put a layer of Butterfinger crumbs on the bottom of my “ bucket” before picking out my yogurt flavor. We paid for our yogurt, complete with toppings, fudge and whipped cream and took a seat.

Half way through DC announced “This is mine”.

Okay….??….???

I didn’t know what that was all about but I said “Yes, Bud, that is yours”.

He announced again, “This is mine!”

Now I’m thinking that he was worried that I wanted some of his. (You know the commercial for macaroni and cheese “skimming”? That’s me! Guilty! He usually never comments on my skimming, so I was a little surprised that he was so adamant about the yogurt being “his”).

“Don’t worry, Mom has her own, yes, that is yours”.

We continued to eat our yogurt and when DC made it to the bottom of “his”, he showed me his spoon covered with MY BUTTERFINGER Crumbs and said “I don’t like this” (seriously, WHO doesn’t love Butterfinger crumbs!)

We had mixed up our yogurt buckets and he knew it. He was trying to tell me that the whole time. Now I know he confuses the words – I, me, you, yours and mine but he was so adamant about telling me it was “his” and because of my assumption that the “skimming” was beginning to bother him I just didn’t realize he was just reversing his words as usual!

So the lesson for that day was;

If I listened to what he was really trying to say, I would have gotten to have my Butterfinger crumbs!

And again, who doesn’t love butterfingers????!!!!!!

Just another item to file under “things I should know by now”

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

Posted by TakingItAStepAtATime

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)…… ……….