Will it go round in circles – Paperwork and “Please Press One”

or: “For No Help What-So-Ever; Please Press #1”

circles

Paperwork..,,,

and Contact Numbers that rarely bring one to an actual person…. “Please press One”

or “Please complete this form. A form that you or no one you know will ever be able to understand – we do not even understand the form and can not help you in any way,  but we do expect you to be able to complete it by…..”

Not a fan of the paperwork. (click here for a fun romp through our state’s system)

Not a fan of the mountains of unnecessary mail that comes my way.

This (4 page) letter is to inform you that you have been assigned a new contact – Effective immediately, your new contact is: Customer Service at 555-5555.

Is it really necessary to send a 4 page notice at a cost of close to $2.00 in postage to both DC and myself to inform us that our new contact is “Customer Service”? Especially since the last 4 times we were notified of a new case manager their name just happened to be “Customer Service” as well.

I have developed a real aversion to opening my mail – ask anyone that has ever seen my kitchen table. Fortunately it is only DC and I that have to use the kitchen table , so there is still room enough for us, for now.

I have been a single mother for about 22 years so all of this paperwork has always fallen to me. In my opinion, the paperwork got worse and more confusing after DC turned 18. At this point, I am used to it and it is more annoying than anything else. Why do we have to do the whole probate thing every three years? Is it to make certain that DC still has autism? Two redeterminations every year, a social security report once a year and an audit anytime they feel like it. Reporting his wages every month – which really is not a big deal in the grand scheme of things – but sitting though that automated system can drive one to want to ‘slam head on table’. There is an app for this now and when it is working, is much easier. When it is not working we have to resort to the ‘slam head on table’ automated system. After using the app or the ‘SHOT’ system, I receive 2 letters, one for me and another for DC, thanking me for reporting his wages and an estimate of his upcoming benefits. Later in the month I receive two more with the actual amount of his benefits. Four letters every month at more than 1.00 in postage each. It seems like such a waste of money and resources to me, but what do I know?

DC’s father’s only contribution since DC turned 18 is health insurance. He retired from the police force before the pending contract took effect when they would have had to begin to contribute for dependent coverage,  so as it stands DC is covered at no charge.

A few weeks ago, I received a letter from the insurance company. It was a good sized envelope – more than one page, I was sure – so I let it sit for about a week or so. I finally decided that I really should open it since I don’t normally get mail from the insurance company. The insurance is not in my name so the mail usually goes directly to his Dad. His insurance is one of the few things that we really have not had any issues with over the years.

What would normally happen here is:

  • I would read the whole thing –
  • Give it to his father the next time he came to pick up DC –
  • Explain what is was all about –
  • Explain in detail what he had to do to take care of it.

But….. I had just finished DC’s redetermination (a good 10 pages) and completed another redetermination over the phone at 7:00 am on a Saturday morning (yes, they called at 7am on a Saturday because they were “working overtime” which, I assume must mean that if they are up and working everyone else should be), so after reading one paragraph, I decided I was just not going to read it at all. I would just give it to his Dad.

From the paragraph I did read I gathered that this was about DC’s ER visit after his first seizure in June. I also surmised that they were not willing to pay the amount that the ER doctor had charged for the visit.

I gave him the letter the next time he arrived to pick up DC. He looked confused – just staring at the pages. I did tell him that I was boycotting paperwork that was not mine but did explain to him what I thought it was all about…. reasonable and customary etc.

So off he went straight on into his first foray through the world of paperwork, forms and 1-800 numbers.

The following week he came back so beside himself at the amount of time he had spent calling numbers that provided no information at all. He was convinced that they were just sending him ’round in circles.

I had to laugh – not at him,

…maybe just a little…

but at how perplexed he was over all of this. Until then he did not realize just how much nonsense I and others have to go through just to have a question answered – just to talk to a person. And this was just the insurance, not any of the agencies that we all have to deal with.

He said that he did actually get to speak to one person who gave him yet another number to call that turned out to be some sort of factory in Minnesota.

He was done at this point (and yes, I was still laughing, not at him – well maybe a little – but at his reaction to the whole thing – it was all new to him).

He left me with a stamped self addressed envelope (because he was leaving for Florida for the winter the following day) to send him any bill that I might receive so he can just pay it. He was so beside himself that he was willing to just give up and pay whatever they wanted in order to never have to call them again.

That may have been their plan all along…

and welcome to my world…..

 

 

 

 

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Still no elf on our shelf

In observance of the official start of the Christmas season (in DC’s eyes, anyway) – the day that the tree must go up and his hundreds of ornaments hung anywhere he can fit them; is a post from the same time last year. Although, much to my surprise DC did pick out an Elf on the Shelf ornament for the tree further into the season last year – there is still no Elf on our shelf.

THERE IS NO ELF ON OUR SHELF….

I have never attempted  “Elf on the Shelf” with DC. It looks like fun but I am not quite sure that he would “get it”, and if he did, I would be terrified to ruin the whole thing by forgetting to move the elf every day.  Unfortunately, the anxiety of forgetting is still never a guarantee that I will remember when it was time for Elf to move to a different spot. Then,  as *Geri said to me on Wednesday, “I don’t know where I put Derek the Elf last year. I have to find him by tomorrow” – I would always be in that same boat – I am notorious for putting things away that are never to be seen again.

Not participating does not stop me from harassing my two co-workers with clever photos of Elf ideas that I come across. If I am not going to do this, then they darn well better get creative about it for their kids. I mean someone should use the ideas that I would have used if Elf lived in our house, right?

(please pass the “pressure”)

Last year, Elf seemed to be everywhere. I do not know if it had become more popular or if it was due to the fact that two of my friends/co-workers, *Al and *Geri were elf’ing it for their children and that many of my instagram friends were posting daily photos of elf and his/her activities at their house. Whatever the reason, I found myself feeling guilty not having done this for DC.

After thinking about it for a while, trying to come up with something else to do in place of Elf, something that didn’t depend 100% on my memory –  I thought about his love for Christmas ornaments and our annual “ornament ritual” and came up with an idea.

DC loves ornaments. He always did. When I come across an ornament of a character, book, food or object that he loves, I buy it and save it for Christmas. Our tree generally goes up the day after Thanksgiving. DC loves going through all of his ornaments and hanging them on the tree. He is at the point now where he can unwrap and hang them all himself. He has accumulated so many  over the years that there is no longer room for any other ornaments on the tree – my Star Trek collection has not seen the light of day in many years.

Kirk, out!

Depending on the amount of ornaments I have stockpiled ahead of time each year, one is placed under the tree every few days. DC knows that if the gift is wrapped in aluminum foil, he has permission to open it.

I decided I might try hiding the ornaments around the house every few days. In making up this new tradition, there were no rules and appointed times that I needed to adhere to. I decided I would not tell him about this hunt, but I would hide the fist one or two new ornaments in places where he could not possibly miss seeing them, until he got used to not finding them under the tree.

I hid the first ornament on the shower rod, knowing there was no way possible that he could miss this. If he didn’t see it the second he walked into the bathroom, then he would definitely see it the moment he looked in the mirror. There was no way he could ever miss this ornament!

popcorn

He missed it……

It hung there the entire day. He even took a shower and did not notice it. Finally I had to tell him that I thought I saw a new ornament hanging in the bathroom – only then did he find it.

I hid a new ornament the following day. It was sitting right on top of the shoe basket. One of the first things DC does when he walks in the house is take his shoes off. There was no way he would not see this one.

glass slipper

He didn’t…….

This was not going as well as I expected. He was happy as he always is to receive a new ornament, but the whole surprise of just happening upon a new ornament was not what I’d hoped it would be. I just about had to point them out to him. I could have just continued on with the ‘aluminum foil package under the tree’ tradition.

I decided I would leave a note each time there was an ornament to be found.

This helped in his search, but still,  the ornaments that were right out in the open and visible seemed to be the most difficult for him to find.

pinocio

 

bazingarescuers

For a child that never misses anything, he was missing a lot.

Even odder – the ornaments that were hidden well out of plain sight, were found almost immediately, before reading the notes or clues. He went right for them.

cupfrozen

hooksnowBy the time Christmas rolled around and the last ornament was hidden and found, he had finally gotten the hang of it. He was having fun with it.

ariel

So, we’ll chalk last year up to a ‘trial run’. Here’s hoping this year I can get a little bit more creative with the hiding places and maybe leave clues instead of plain old notes. But still, our new tradition is not Elf on the Shelf – funny how these silly, little things can make one feel so guilty.

My stockpile this year does include a “Buddy the Elf” ornament which will be hidden on the shelf.

 

That counts, right?

 

***

(this post was originally run in November 2014)

 

 

 

Happy Thanksgiving!

Wishing you all a very Happy Thanksgiving…..

Someone I know is looking very forward to a turkey leg –

or “Chicken with bones and sprinkles”

-although I’m sure the wings will do in a pinch.

It’s all about the bones.

But bones aside,  right now he would just like to wish you all a Happy Thanksgiving!

 

 

Two Years ago – “I Love you, Mom” (Just a little Thanksgiving Quickie)

(November 2013)

DC flashing the I Love you Sign as he does almost anytime he walks by me.

DC flashing the I Love you Sign as he does almost anytime he walks by me.

Who would not be thankful for this wonderful child who will just flash me the “I Love You” sign, just because he happens to be walking by or just randomly peek around the corner to say “I love you, Mom”.

Happy Thanksgiving…….

“Don’t you cry no more” #Supernatural

Autograph

Earlier this month we attended Rhode Island Comic-Con in Providence. It was an experience to say the least.

(I have a lot to say about our visit to the Rhode Island Comic-Con. Some good; some not so much. Everyone we met was very nice. Now I understand that they are supposed to be, but we all know that it isn’t always the case. There were a few people who were just extraordinarily wonderful to DC, so I want to be sure I mention all of them. Because I have so much to say about the entire event; Autism-related and not,  I have decided to split the story up into a few parts, by category rather than in order by the day) 

Let me first say that I am a huge fan of  Jim Beaver. I have been since his time on Deadwood.  Jim Beaver was one of the reasons I became a fan of Supernatural – yes, Sam was Dean on The Gilmore Girls so I may have been leaning in that direction anyway, but Jim Beaver gave me the push I needed.  DC is also very aware of the show, but other than Sam and Dean (who were not there), Jim Beaver (aka Bobby) is really the only other cast member that I knew for sure he would recognize. Why is DC familiar with Supernatural (or the “Don’t you cry no more” show) you ask?

Well DC loves music, but his musical choices do not usually come from what he hears on the radio unless it is a Disney song or a song from a movie he has seen. There are only a handful of songs that I can think of that he knows specifically from the radio – Carry On Wayward Son, just happens to be one of them. He zoned right in on the “Don’t you cry no more” line and it has been a favorite of his since.

For those of you who may not be fans of the show, Carry On Wayward Son opens the last episode of almost every season. DC picked up on that right away and as everything is related, he began watching the show.

We didn’t have a lot pre-scheduled for Friday night at Comic-Con. One op I had scheduled was Brent Spiner who had cancelled his appearance a few weeks earlier (“From this moment on, you are my mortal enemy!”) so I thought we would use Friday night to just go and get the lay of the land before Saturday when I was sure it would just be mobbed. We really did not expect to see many people or do very much that night, I just really wanted to figure out where everything and everybody was going to be. As it turned out, Friday was the best day of the event for us. It was not crowded at all and we got to do and see an awful lot.

As we were walking and looking around I noticed that there were no lines at many of the autograph tables. Then we came upon the “Don’t you cry no more” room. The first table belonged to none other than Jim Beaver (be still my heart) – he was not there but the tablecloth was not turned up covering the photos for sale as others were so I assumed that he would be right back. We did have a photo op scheduled with him on Saturday, but photo ops are usually very hurried, so I thought this would be a good opportunity for DC to see him and not feel so overwhelmed and rushed. When we went over to stand at his table and wait, a boy who looked to be about 12 came over to us and asked us if we were in line. DC, who seldom initiates a conversation or a greeting, took one look at this boy, who looked just like a younger version of his friend *Ron from Camp and excitedly in his high-pitched squeaky DC voice squealed  “Hello there! My name is DC Last Name. How are you? It is nice to meet you!”. He grabbed his hand and shook it so hard the boy’s entire body was shaking.  The boy was so very nice.  He was not taken aback by DC’s squealing  and excitement. The smile never left his face. He answered him, let him shake his hand again and told him his name (which unfortunately I do not remember). He then went back to stand with his mother just outside the room.

While we were standing there, I noticed Samantha Ferris at the next table. I asked DC if he wanted to go over there while we were waiting. He said No – he didn’t want to get out of line – even though we were the only ones in said line;  we were in line and in DC’s mind, that was all there was to it. I told him that we would not miss Jim if we went to the next table for a minute. Samantha is a pretty woman with long hair so I knew he wanted to go over there if not for anything else but the long hair  but…. he was in line. I finally convinced him that we could go and come back to Jim’s line afterward. He finally agreed.

Once there, he did get very excited. He told her his name and told her where he lived. Again, he was more conversational than usual. She was wonderful with him. She asked me questions but she also directed some questions to DC (which we know does not always happen). She asked how he became a fan and I explained the song connection. She sang a few bars of ‘Carry On’ for him – which just thrilled him to death. She asked him if the show ever frightened him. He said “No”. I began to explain to her how we talk about the fact that the show is only…. – DC piped in with – “Make-believe”. We talked about one of the loves of his life, Felicia Day (a recurring character) who he had the opportunity to meet a few years ago at NY Comic-Con. Samantha certainly added a new fan to her list that night!

 

DC and Samantha Ferris

DC and Samantha Ferris

 

As soon as we were finished there, DC immediately wanted to go “back to the line” (there was still no line) and Jim had not returned. Samantha told us he would be right back, so back to the “line” we went. DC started getting a little bit anxious while waiting but fortunately not too over the top. Someone ran by us and said “We’ll let him know someone is waiting” and before I had the chance to finish telling them that it was not necessary to rush him, they were gone.

Eventually when he did come out, he looked a bit out of sorts; not the “I don’t want to be here”  out of sorts – he looked as if something was wrong or something had happened. I felt bad and hoped that the powers that be did not make him come out just for us. He apologized and said there had been a slight emergency, which I absolutely believe due to the almost shaken look on his face. Now I felt even worse. Of course the first thing out of DC’s mouth was “I have been looking all everywhere for you”.  Then for some reason, probably because he was zoning out a bit at this point , he called him “Jake” instead of Jim or Bobby. He got his “DC picture” as he called it, so he was happy.

We turned to leave and there was the boy from earlier. DC again very excitedly , shook his hand, gave him a hug and told him he loved him (the asking permission before hugging anyone rule went completely out the window that weekend) – the boy, as before, went along with all of it thankfully.  What an extraordinary child! I wish I could send him many gifts!

During the course of the weekend we ventured back in to the Supernatural room many times.

On Saturday he met Curtis Armstrong (Metatron – aka “The worst angel ever”), Mitch Pileggi (Samuel)

DC and Curtis Armstrong

DC and Curtis Armstrong

 

Mitch Pileggi and DC

DC and Mitch Pileggi

and Alona Tal (Jo).  There was no explanation of character necessary for DC here – she is a pretty blonde and that was all he needed to know!

Dc and Alona Tal

Dc and Alona Tal

 

Supernatural room = Success!

Saturday was even more crowded than I expected.

We had three photo ops scheduled on Saturday. I purchased Jim Beaver way back in July and the others at later dates. The only information listed when purchasing a photo op on-line was the day; Friday, Saturday or Sunday.  When they did finally post the scheduled times I discovered that Jim Beaver and another were listed at the same time. I have to imagine that this happened to many other people as well.

On our way to the most unorganized photo op room I have ever seen, DC announced that he needed to “Flap his Wings”. It was just too crowded for him to flap where we were at the time but we did manage to find a corner almost under the bleachers for him to flap. I had him jump up and down a bit too while we had the space,  just to try to get it all out. Then we headed to the area where the photos were to be taken. Jim Beaver was scheduled for 12:45 – 1:15 and the other was scheduled for 12:45 – 1:30. We we decided to get Jim Beaver done first. Explaining the conflict to a volunteer in order to find out how early we could get in line for Jim Beaver, I took out my printed ticket with bar code that clearly stated: You must present this ticket with the Bar Code and your e-mail address to double check the time I had written on the ticket. She looked at it and told us we could probably get in line at about 12:30. We walked around a bit and revisited the “jump and flap” area for one final go. Then we went back to get in line at the time she had given us. I gave the same volunteer my ticket and she said “Oh no, we can’t take those paper tickets. You have to get in that line over there and trade them in for cards.”

What?!?

I followed the direction of her pointing finger to the mob scene, she referred to as a line, and questioned the ticketing process. This was supposed to be our ticket. “I don’t know, I’m just a volunteer, but don’t worry; he’s not here yet”. Firstly, I can not tell you how many times I heard “I don’t know, I am just a volunteer” that day and secondly, the issue was not whether he was there or not, it was about trying to get closer to the front due to our time conflict. We went over and got at the end of  the “card” line. While waiting and out of the blue, DC decided to hug the man dressed as Mr. Spock who was in front of us in the card line. Fortunately again, Spock had no problem with this random hug from a stranger. He explained that he has three children on the spectrum, so he was not fazed by it at all. We talked special needs programs for a bit until it was our turn to trade in our tickets. We finally made it out of that line with our “cards” but by the time we got back to the photo line the entire fenced in area was full and our place in line was outside of the roped in area. The volunteer saw us and yelled. “Don’t worry, he’s not in there yet” – again, not the point!

(I will revisit these paper tickets and photo op lines again in another post)

Doug, who unlike me can usually put up with just about anything, went ahead and spoke to a volunteer at the head of the line. Shortly thereafter a different volunteer came and moved us to the front of the line. I have written before that I do not generally look for accommodations for DC and I did not here. I always want him to try. I did purchase VIP tickets because of DC but this is not Comic-Con or the convention center making accommodations for my son, that is me paying more money to accommodate my child on my own. We did what we were supposed to do. We discovered the scheduling conflict. We planned ahead to get in line early, not earlier than anyone else would be allowed to, but as early as was allowed. We had the proper tickets, only to be told that we didn’t.  So for anyone that might be wondering or is waiting to pounce; we were not moved to the front due to DC’s autism – we were moved to the front due to the total unorganized way that this event was run (there is more, trust me).

After all of this, it was finally our turn to see Jim Beaver. DC did attend one photo op on Friday night (paper tickets were accepted then and there was no mention of a card ticket). Because of the Friday op, DC was expecting Jim Beaver to be standing on the same side of the room as the person was the night before. He wasn’t – he was on the side of the room closest to the curtain where we entered. DC walked into the room, and headed straight to the other side never noticing Jim Beaver standing right there. DC was looking around very confused so  I turned him around and brought him back to Jim, who was looking rather confused himself and probably wondering what was going on.

The photographer took one picture and asked if he would take off his glasses for another. DC, who does not like to part with his glasses immediately said “No”, but he did give in and give them to me. Now he was wearing his crabby face. As soon as they pointed that camera at him, DC being DC,  immediately put on his big photo smile. One of the assistants commented about just how quickly he was able to turn on that smile. Yes, sir. That’s my boy – always the ham. One can not point a camera at or around him and not get that smile.  As soon as the picture was taken DC’s only concern was getting his glasses back. He started walking out without even saying good-bye or thank you, he just wanted the glasses. He did remember his manners after being reminded. I do not usually have to remind him but I know that all that he was thinking at this point was getting out of there before anyone tried to take his glasses again.

DC and Jim Beaver

 

DC (always the actor – wiping his forehead) “Phew, I did it!” 

He had his picture, he had his autograph, both of which will be added to his wall of fame at home and he got his glasses back. Even with the all of the confusion and chaos (there was more), my boy really did a great job of it. We will put the Supernatural portion of our weekend in the win column!

****

Coming soon: The Walking Dead, Dr. Who and his most favorite experience of the Con…

(Our internet has been sporadic this entire week. This post was written partially on my phone and partially on my tablet – typing is difficult enough for me on either of these devices but editing is next to impossible  – my apologies for any and everything I may have missed or made worse by trying to edit on my phone)

 

 

 

 

 

Journals

journalBelow is an article that was published in the October issue of APM. I did share the entire issue when it was first published, but was asked not to share the article itself on my blog (something to do with Google and Searches) until it appeared on their blog. Since it has not appeared on their blog so far and I still am trying to blog from my phone due to our internet issues, I thought that inserting photos rather than trying to type with one finger on my phone seems to be the easiest route to publishing a new post. I decided I would share it under a different title as not to go back on my word and confuse Google.

 

APM Pg 39

Pg 40

This story was originally posted here with the title of “What Did You Do Today?”

It was published in the October Issue of Autism Parenting Magazine – Take a minute to read the full issue.

Hope to be back on-line very soon!

Keep on Tryin’

try2

Semi-typical morning….

DC: “Mom I need help! Something is wrong!”

I run upstairs – due to his recent-ish development of seizures, I run a little bit faster with a bit more panic than I used to.

Me: “What’s wrong?”

DC (angrily) : “Nothing wrong!”

Me: “Bud, you called me and said something was wrong and you needed help. You have to try to tell me what is wrong.”

DC: “Nothing wrong!”

Me: “If you try to tell me I can help you”

DC: “Nothing wrong!”

At this point he is beginning to clench his jaw and arms to the point where his whole body is shaking. I go through the list of everything that would normally set him off in the morning:

  • Did he find a pin hole in his sock?
  • Did he get a drop of water on his shirt?
  • Does he not like the shirt?
  • Is there a tag I didn’t remove?
  • Did I move something in his room?

“NO! NOTHING WRONG!”

Me: “Okay do you want me to leave?”

DC (getting more angry): “YES!”

I take all of two steps towards my room to get ready for work when I hear “Mom, come here. I need your help!” I turn around and am right in front of the door when he decides to slam it in my face.

Me: “DC, that was very rude. You called me to help you and you slammed the door.”

DC: “I’m sorry, Mom ‘for rude’. I will never be rude again!” and he opens the door.

Me: “Okay, Please try to tell me what is bothering you and I can try to help you.”

DC (still clenching) “NOTHING BOTHERING YOU!”

I went though the list of every aliment I could think of; headache, stomach ache, etc…..

DC: “NO! Nothing wrong!”

This whole back and forth continued for another 15 minutes (one might wonder why I either just make it or am late for work every day). He wanted me there but then he didn’t, so I decided to just sit there with him without asking him any questions at all. After a while he calmed down and was back to his happy, smiling self. Whatever was bothering him was not bothering him anymore. After 24 years of trying to figure out every little thing, I had to chalk this one up to not ever knowing what the problem was. Morning issues seem to end up in the unsolved column more often than ‘other time of the day’ issues.

Ready and waiting for his transportation to arrive he said,  “You are the best Mom I ever was” – something I never tire of hearing; exactly the way he says it.

But then….

“Mom, I try so hard”

Whether this was:

  • one of those random phrases that he tends to throw out that does not mean what he thinks it means but often is shockingly  appropriate to the matter at hand
  • or mixing up his pronouns meaning I was trying hard to figure out what was bothering him
  • or he knew exactly what he was saying and was saying exactly what he meant…..

I opted for number 3. The fact of the matter is that he does always try very hard. As much as I have the need to figure it all out all of the time there will always be days when I can’t. As much as he would probably like to be able to tell me, there will always be those days when he can’t ~ and that’s all right. We will both keep on trying.

 

 

 

 

 

 

 

 

 

In place of the rant scheduled for today; I give you – “I told you so”

i told you so

Yesterday I was off on a pretty good rant. I had read a few things in the last few weeks that made me angry and listened to a few more that added to that anger. Let’s just say that the ‘ranty/venty’ post that I wrote earlier was really not ‘fit or human consumption’. I did save it in hopes that I can make it a little less hostile – hopefully I will, one day.

In lieu of the scheduled post is a post I wrote a few years ago about the trials, tribulations and battle for speech therapy for DC, which just so happens to be a small piece of the scheduled rant…..

I don’t want to give away the ending but there may just be an “I told you so” in the mix.

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 4 or 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.

 

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

So… what’s next?

TimeDC tends to get very excited about many things. I hear about whatever he is so excited about all day, every day until it happens. It is always funny and a little bit predictable that when we finally get there, he loves it, he’s having fun, but then 3/4 of the way through, he begins to obsess about “What is next”.

October 31st was a triple whammy for him. After trick or treating we were sitting at the table at his friend’s house having juice and snacks ……… okay so maybe the adults were obsessing about the next Walking Dead episode for a while too (I spend far too much time thinking about that)..  I saw that concerned look on his face. He had just realized that it was the last day of the month.

  • He wore his costume
  • He had a party with his friends
  • He had fun
  • He got his candy
  • Halloween is over

He began obsessing about changing the calendars. I told him we would be going home soon and he could change all of the calendars then.

Calendars are extremely important to DC. They must always reflect the proper month. Fortunately because my desk at work is such a mess, he can not see that the big desk calendar is still on June or he’d have me pulling everything apart to change it.

There was one time when Mrs. H took him to his favorite wing place. She said he was standing at the counter having a conversation with the counter girl. She thought this was odd because DC does not have conversations in the true sense of the word. You ask a question and he will answer it, you ask another question and he will answer that too and so on. She asked the counter girl what she and DC had been talking about. There was a calendar on the wall behind the counter and he felt the need to point out to her that it had not been changed to the current month – he wouldn’t stop until she promised to change it.

I was and still am to some extent, involved and/or on boards for a few organizations and served 3 terms on a town committee. DC, many times had to attend many of these meeting with me. He has been attending with me for years and is usually pretty good about it. He brings his books, sits ‘relatively’ quietly and he knows not to touch anything that does not belong to him in the meeting rooms. One day he got up, went to the bulletin board, took down the calendar and changed it to the proper month. It must have been bothering him throughout the entire meeting.  He knew he was not supposed to touch anything but he just could not control himself.

Not only was he in his “What’s next” and “end of the month calendar changing” mindset but…..but we had to move the clocks back too – all on the same day.

Knowing what this would lead to, I had to explain to him that it would be getting dark very early now and there was nothing to get nervous about. This explanation was in anticipation of him noticing later in the day how early it was getting dark and to hopefully keep him from running to the door every 5 minutes to look outside thinking that a storm was approaching. This never works – but still I try. It happens every year and it goes on for days and days until he is finally used to it.

  • Halloween is over
  • The calendars have been changed
  • The clocks have been changed and explained

so the first thing out of DC’s mouth in the morning ….

“Mom, Thanksgiving is coming soon!”

That’s next so we’re moving on………….

change month