Does everything really need to be this difficult?

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 16th 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 26th 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 30th – 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 20th. 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.

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“Funny Friday”

“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”

"This is Mine"

“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

DC in Uniform - Challengers Baseball

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

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)…… ……….

“Happy?” – “Sorry” – What’s next?

Yes, John Lithgow is "Happy"

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 that). 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.