Pants on Fire

We have heard a lot about RESPECT, AWARENESS and UNDERSTANDING over the past few weeks (End the r-word) and we will hear quite a bit more next month during Autism Awareness Month.

There are times when, we, as parents of children or adults with special needs, do have to go to extremes or try many different tactics to get information from our children. Communication is not easy with my son. He can/will tell me what he wants but anything else is difficult. An answer to a simple question, if I can get an answer at all, can take a good long time and a lot of work.

But….We do not “trick” and we do not lie.

Having said that, when I drop DC off at an activity or event, I do have to tell him verbally and in sign that I am going for ‘coffee’. For some reason, and I really have not been able to figure out why, he knows this means and I am coming back to pick him up. I consider this a “little white lie” , not a big deal. 90% of the time, coffee will be involved in whatever I am doing or wherever I am going.
If I tell him I am going home, or to the store, my departure is prolonged by :
“Mom is coming back?”
Yes, DC.
“Mom is never coming back”
Of course I am coming back, DC.
As I start to walk out of the door, he moves on to – “Mom, come here please”
…………………….and the whole process begins again.
For some reason he accepts ‘going to get coffee’ and it is all good.
For the record, in case anyone thinks he’s been traumatized at some point by being left somewhere……. I have never forgotten to pick him up, I have never even been late to pick him up from anything at anytime, so I really don’t know where this comes from, but ‘coffee’ seems to be okay with him. Why I have to use the ‘coffee’ sign is just another mystery.
This sort of thing, which actually makes him feel better, and is not hurting him or anyone else, is fine with me. I don’t really consider it a lie and it is certainly not a trick.

A few weeks ago, a friend and I were having lunch in a restaurant that is staffed by special needs adults. They do, of course have supervisors, but the wait staff and kitchen staff are all adults with various special needs.
This particular day, my friend and I were sitting at the farthest corner of the restaurant.
I am a “people watcher” by nature, but if the following exchange could be heard in detail by us, sitting so far away, it was without a doubt, heard by the customers sitting closer to the front.

I noticed a staff member approach the restaurant supervisor, who had been eating at her desk since we arrived, with some sort of candy/food wrapper. I really didn’t hear what the first staff member said to the supervisor, but the supervisor replied, “I don’t know who was just in the bathroom”. So again, being a parent of a special needs child and having quite a few friends with special needs children, I surmised from this (loud) statement that someone was sneaking food in the bathroom.
I get this, I get how this could be a concern. Did it have to be announced? No, but I do get it.
I continued to watch because, still eating with one hand, she picked up the wrapper in a scissor hold (between her index and middle finger), lifted it up into the air over her head and turned it side to side as if she was looking for finger prints or something. The production she was making was kind of funny and way over the top. It was without a doubt entertaining, anyway. I assumed that was the end of it, but what followed was not funny or entertaining at all.

She put her food down, got up from her desk and went over to the counter that looks into the kitchen area. She raised this wrapper over her head (still in the scissor hold) and asked, “Who left this wrapper out here” (Not “Who left this wrapper in the bathroom”).
I could hear a few employees answer, “Not Me”, “It wasn’t me”.
She then said, “I just wanted to know where I can get these”. Her assistant joined in by saying “They look so good, they have raisins and ___, (I couldn’t hear the other ingredient she mentioned) we just want to know where we can get them”.

At this point I could hear someone reply. I could not hear what they said, but someone did reply.
The supervisor then asked “Did you buy them yourself or did your mother buy them for you?”
I heard the employee reply that her mother bought them.

As they walked away from the counter, proud of themselves for tricking the employee into confessing by taking full advantage of her disability, the Assistant said, “I knew it was her” – the Supervisor replied, “Of course it was, she didn’t say a word when I asked who left it”.

Again – far side of the restaurant – we heard all of it.

RESPECT, UNDERSTANDING, AWARENESS, TRUST and let us add CONFIDENTIALITY???? What do we do when the people entrusted to care for and work with our children do not seem to know the meaning of any of those words?

Apparently, we still have so much more work to do.

(Just as an FYI, Normally I would have said something to her, her supervisor or both right away, but I was 95% sure that the person they were tricking into confessing was the son of a friend of mine. I wanted to tell my friend the story before giving the manager a heads-up and a chance to come up with a different version.)

****

Tales from the Day Program – ALL

Baltimore, Over the Rainbow and Back – Part 1

Posted by TakingItAStepAtATime

I really couldn’t write about this trip without including this part of it. This part, Part 1 is a little bit “cranky” – my apologies, in advance.

In early February we set off for DC’s third cruise, his second on Royal Caribbean. We didn’t have to fly for a change because the ship was leaving from Baltimore.
We drove down on Thursday night for Fridays boarding.
There are not many things DC loves more than staying in a hotel, so he was very happy that we were staying overnight. He was even more excited to be in Baltimore, because, of course….. “Hairspray”. I am sure he was expecting Tracy Turnblad (Nikki Blonsky) to be dancing in the streets (I prefer the Ricky Lake version, but that’s just me)

Our ship was to make stops in Port Canaveral, Nassau – Bahamas, Coco Kay – (private island) also in the Bahamas and Key West, in that order. We booked our tours ahead of time and we made a conscious effort not to mention “Bahamas” because DC just hates it there. The tour we choose in Port Canaveral, was a bus trip to Disney World. We kept this a secret as well, otherwise we would not hear about anything else for weeks before the trip.

Friday morning arrived and we took the shuttle from the hotel to the ship. We made our way through security, filled out our forms and went to check in.

DC is 22, but obviously does not drive. He has a State ID. He does not yet have a passport, but a passport is not necessary to go to the Bahamas. All that is required is a state ID/drivers license and birth certificate. When DC was born, I did not opt for the full size certificate. I was told at the time, that the wallet size was just as official and was much more convenient. I have never had a problem with it.

Just to back up a moment…… I am someone who will “put something in a safe place” and never find it again, so I have always carried DC’s birth certificate, along with my own, in my wallet. It has been in my wallet for 22 years, obviously not the same wallet, but in A wallet for 22 years. The top of the certificate is a little bit frayed, but all of the information and the seal is visible.

After giving the woman at the check-in counter (let’s call her “woman #1) all of our paperwork and identifications (the very same identification used the year before and the year before that) she informed me that she did not know if Key West would accept DC birth certificate! She would have to go and have it checked out.

What??? I explained that this is the same birth certificate we used the previous year.

W#1: “Yes, but Key West is really cracking down and it’s a little tattered on the top”

Me: “Well it’s 22 years old! What will we have to do if Key West decides not to accept it?” – (The last few times it has been out of my wallet, was when we checked in last year and at check in the year before that, so the condition has not changed since they approved it on the last trip)

(At this point Doug is muttering under his breath in kind of that sing-song way “Don’t argue with them!”)

Number 1, that is what I do…

and

Number 2, I was not arguing, I was asking what I thought were valid questions.

W#1: “You will probably have to have someone fax the long copy over”

Me: “There is no one at home that has any copies of his information”

W#1 “Oh no, well I don’t know”

– so, in my mind, what she is telling me is:

If I had a family member back home who had access to a long version of his birth certificate or another copy of the wallet size they could fax it over and they WOULD accept a fax copy with out the raised seal (???) – I’m sorry, I was now very confused by all this.

We were asked to sit down and wait in a roped off area. The few people who were waiting there, were waiting to be seen by a doctor before boarding the ship – (we’ll call this the “problem section”).
DC remembering everything, knew that after the check in desk, we should be boarding the ship.

DC: “Time to go to the ship”

Me: “Yes, we just have to wait a few minutes”

DC: “Going to the ship”

Me: “Yes, we just have to wait a few minutes, Bud”

– Now I’m having flashbacks of San Francisco ….

Eventually another woman who seemed to be in charge of the “problem section” came over to tell us that they were still waiting to hear from Key West (we shall call her “Woman in Charge” or WIC for short). She told us that there was an additional problem with DC’s birth certificate; there was no file number on top, just x’s. I had never noticed that and apparently no one else in 22 years – Royal Caribbean, included, noticed either. I took out my own birth certificate, issued in the same city and state and sure enough, mine had a number, his did not.
Now I was really beginning to panic – because this is also what I do. We had been sitting in this area for almost an hour. We were the only people left in the “problem section”. My only thoughts now were:

What if they decide not to accept his birth certificate?

and:

How would I ever tell him we could not get on this ship?

We had been sitting there for more than an hour, now. Suddenly realizing that it was Friday and city and state offices are open, I found the number to the department/office where our birth certificates were issued. Of course, this is a government office so I could not get passed the main menu and any option I choose, led me back to the original menu (there was no “dial zero for an operator” option). I started dialing random 3 and 4 digit extensions and finally a woman answered. I explained our situation. She explained that not everyone is issued a file number. This woman was nice enough to hold while I went to the desk and explained to the “WIC” that I had a city employee on the phone and she told me that not everyone is issued a file number.

The response: “Well YOU have one!”

(“not everyone” to most people, means that some are and some are not)

Me: “Yes I do, but mine was issued 31 years earlier than his!”

I asked if she would talk to the woman from the city, she wouldn’t. I asked if there was something that this woman could fax over to help the process (I didn’t want to lose the person on the phone before finding out what I needed in the event Key West decided not to accept his certificate).

WIC: “It’s in the hands of Key West now, I can not do anything about it”

– so W#1 told us that we would have to have something faxed over if they did not accept the certificate we had with us, but WIC wouldn’t tell me what to have faxed or the fax number to send it to now that I had someone on the line –

While I was standing there with the city employee still on the line, the WIC looked at her screen and announced that Key West has approved his certificate.
~PHEW ~ (as DC would say)

I thanked the woman holding on the phone and told her that they finally approved it and we were all set.

Still sitting in the “problem section”, she directed another woman (we’ll call her woman #3) to begin checking us in. She took our names and paperwork all over again and told us to have a seat because she needed information form the original check in person (woman #1). We sat down again, woman #3 left. She came back to her seat as another passenger walked into this “problem section”, walked up to woman #3, waved to all of the other people working the regular check in line and got herself checked in.

My assumption at the time was that woman #3 was still waiting for woman #1 to supply her with whatever information she had already entered into the system, so she decided to check in this other passenger (who obviously either works for Royal Caribbean or has some sort of connection to the line). When she finished checking in this passenger, she just sat at the counter. The “problem section” was still empty with the exception of us, so she literally sat there, hands folded with a smile staring off into distance as if she was waiting for her next passenger.
Now we’ve been sitting in the “problem section” for another half hour (One hour and 45 minutes listening to “Going on the ship” – “Time to get on the ship”). I turned to Doug and said “Do you think we are still supposed to be sitting here? I’m going to go ask”

– “Just wait, they will call us when they are ready. Don’t keep bothering them.”

After another 15 minutes, Woman #3 was still just sitting there, hands folded, grinning at no one. I went up to the desk and asked the WIC who was at the computer behind “Grinning W#3” – “Should we still be sitting here or should we get back in line?”

Apparently, woman #3 should have been checking us in, but decided to wait on her friend in the middle of our check in and then just forgot about us! She wasn’t waiting for information as I assumed, she just thought we were already checked in! After WIC yelled “Why didn’t you check them in? I told you to check them in!” – she finally checked us in.

– More than two hours of – “Going on the ship” – “Time to get on the ship” later, we were finally checked in and ready to board.

On the ship, thankfully lunch was still being served (what a catastrophe THAT would have been, if DC missed lunch too!)

A cheeseburger and fries took his mind off of the whole boarding debacle. Everything was right with the world in his eyes.

Cheeseburger, fries AND “Chicken with Bones”

I opted for something a little bit stronger…..

Less Calories 🙂

DC WILL be getting a passport very soon….

And who knew it is more difficult to get into Key West than the Bahamas? Who knew?

(to be continued in Part 2- where our trip does get better..)

“We Go Together……..

Posted by TakingItAStepAtATime

…like Ramma lamma lamma Ka dinga da dinga dong
Remembered forever like Shoo-wop sha whada whadda Yippidy boom da boom
Chang chang changity chang shoo bop That’s the way it should be
Waooo Yeah!”

These Kids Rock! They really do!

That was originally all I intended to say. I wasn’t really considering writing about this, but……. as I was thinking about just how proud I am of each and every one of them and just how much DC and his friends just rise to the occasion and always have a great time together, I just had to mention the fact that not only does DC have the best friends anyone could hope for…. I do as well.

As I wrote in an earlier post:

***I am fortunate to have friends that are willing to go all out for something that DC loves so much; we all took a line from that song and dressed appropriately for the Sing-A-Long. He and his friends had a ball and I think after the initial embarrassment, my friends did as well.***

DC and I are very fortunate to have these people in our life. I am not just talking about the sing-a-long we just attended, but in general, these people are just the best, THE BEST!

DC and his friend BB love Grease. BB is a long-time fan, DC became a fan because of him. When I heard the local theater had scheduled a Grease Sing-A-Long, I knew we just had to attend. Everyone agreed to attend and then I proceeded to harass them for months about costumes. I will admit that I can be a little bit high pressure when it comes to costumes (just a little bit), but I am sure they expected it and if they didn’t, they put up with me anyway. I am sure the last thing the adults wanted to do was to wear a costume again (Halloween is over, can’t we get a break?) but they agreed.

But…. did they expect to be wearing toilet paper rolls? I doubt it. I think they actually thought I was joking when I first brought it up. They quickly realized that I never joke about costumes so the “roll collection” process began. BB and his Mom, Donna were not able to attend the Sound of Music event with us, so as BB was looking forward to wearing his “Grease Garb”, I don’t think Donna realized that she would also be in costume as well until about a week before the event.

We collected our toilet paper and paper towel rolls and headed to Tonya’s house one Sunday afternoon. Tonya being the craft genius and glue gun wizard, was able to figure out just how to do this.

Talk about “Above and Beyond”; she sat there for hours gluing toilet paper rolls to foam strips! All that we had to do was supply our heads.

Glue Gun Wizard

They looked fantastic! They were unexpectedly comfortable too!

We headed out to the theater on Thursday night in single-digit weather – not wanting coats to muck up the costumes – it was COLD! We had 10 seats in the first row of the upper orchestra section. Coincidentally a friend of mine had the rest of the seats in that row! Together, we made the best row of costumes there (my opinion only, but I firmly believe this to be true 🙂 ).

We sang, we danced, we had many, many photos taken of us as a group and of us with strangers. We were interviewed and photographed by the local news paper. Those under the delusion they would not be noticed, were wrong.
The “kids” had so much fun singing, dancing and using the props provided by the theater. They just ate up all of the attention they were getting.
The adults had a great time, singing and dancing as well..

except for this guy……..

Except this guy – Grease Sing A Long – Beauty School Drop Out

Those still under the delusion of anonymity, had that shattered when they were plastered all over the news on Saturday.

The Theater’s Facebook Page

As the show was on a Thursday night and not on a weekend, we weren’t able to go out to eat in full dress afterwards – this had to be some consolation to the adults anyway……

But all joking aside, we did have a wonderful time. I can’t say enough about all of them.

Walking around in public wearing toilet paper rolls….

the truest measure of friendship….

Thanks to all of you!

*Thanks to my friend *Al at work, who always comes up with a fantastic photo of our outings

The things we know…. and the things we don’t

Posted by TakingItAStepAtATime

Just 5 minutes inside his head.

My friend Peg and I have often discussed just how fantastic it would be if we could just get inside our kids’ head for five minutes! That is all we wanted, 5 minutes…. 5 minutes just to see what is really going on in there.

We never really know, we may think we do, but we really, really don’t.

As much as I think I know my son like the back of my hand, there are still times when I realize I do not know anything at all.

For example, during his 3rd year of swimming with Special Olympics, his coach yelled over to me one day at practice “He just figured out he can open his eyes with the goggles on!” – At that point in time, he’d been wearing the goggles for practice twice a week and during competitions for as I said, 3 years. It never occurred to me or anyone else for that matter that he didn’t know he could open his eyes while wearing them. I suppose, that knowing him as I think I do, it should have, but – no, it did not.

I am relatively sure he does not understand “death”. Other than Bambi’s mother and Old Yeller (who was quickly replaced at the end), none of his favorite Disney characters ever die, really. If they do – it doesn’t last. Someone kisses them, or a spell is cast and there they are, good as new. I try to talk to him about death, due to my “dropping dead” obsession and because everyone dies eventually. I never want him to think I just left him, but I really can not say that he understands it at all.

DC seems to live in the present. Things change and he just changes with them. I had a conversation with my friend, Toni a while back. Her daughter can watch something like Full House and relate it to her own life – high school, college, get a job, buy a car, get married, and have children. DC watches but does not relate any of this to his own life. He went to high school because I sent him. He moved on to “college” because I sent him and so on. I tell him what to do and he does it. I have tried to have conversations with him about what he thinks should come next in his life, but these conversations just tend to go to “dinner” or whatever meal or activity may be coming up. His future is not a concept he can grasp. He lives in the present and doesn’t seem to think about anything changing in his life, things just change and he just goes with it.

So the other night DC was on a ‘picture drawing’ roll – Flowers for Mom, Hearts for Mom, Birthday Cake for Mom and then this…..

Wedding Cake ? For Mom?

Needless to say I was a little bit thrown. DC’s Dad and I divorced when DC was 3. At the time, I didn’t try to explain it to him, I was too busy trying to get him diagnosed. It didn’t seem to faze him, he still saw his Dad every week and I was sure he would not understand any attempt I could make at explaining it to him. He never seemed to think anything of it. As marriage is something I never had or have any desire to do again, it is not something we ever talked about. Other than adding “Baby for Mom” to his Christmas list a few years ago, I never really had any indication that he might realize that things may be different here than at his friends’ homes. I am still not sure that he does. It has always been this way – it is what he is used to.
Most of his friends do have parents that are together and they also have brothers and sisters. But I still do not think he relates that to his own life. But again, every time I think I have him figured out he does something like presenting me with a drawing of a three layer wedding cake specifically for “Mom” and he has me guessing all over again.

That five minutes in his head, would come in very handy right now, but since I can’t have that, I am going to assume that he just really loves Wedding Cake and he just wants to share with his Mom………….

Everyone needs a little “fairy dust”

Posted by TakingItAStepAtATime

Everyone needs a little Fairy Dust

Harassing my co-workers for their paper towel rolls for a project this week, made me think about the reasons I don’t buy paper towels myself. This then led me to think about all of the other things I don’t buy, have to hide or make adjustments to, around the house.

Shampoo: This is no longer an issue, but at one time and for many years if I forgot to take the shampoo out of the shower, most of the bottle would be used to paint a masterpiece and the rest went down the drain…… every time.

Paper Towels: Paper Towels are for shredding and only for shredding. On the rare occasion that I do buy them, they have to be hidden on top of the refrigerator. Hiding the paper towels makes them not very convenient for me to use and forgettable, so there really isn’t any point in buying them at all.

Paper: Every single piece of blank paper in the house has a Disney character’s name written on it. Teachers, Camp councilors and anyone else I have to write a note to, receives that note on our exclusive custom stationary. After a few weeks of notes to camp, the Director finally asked “Do you guys do ‘A Character a day or something’?” No, unfortunately nothing that creative, I just can’t keep the paper out of the hands of my in-house stationary designer.

Construction Paper: Construction paper is also used specifically for character names, BUT according to the rule made up in his head, these sheets can not and will not be saved. They MUST be cut up into small pieces with scissors and spread out all over the floor. He must also write on each sheet of an entire package of paper before he begins the job of shredding/cutting. A few pieces just doesn’t do it. A package of construction paper will only last an hour or two after it has been opened.

Old Grainy picture of DC surrounded by shredded construction paper.

He has been a bit better with the construction paper lately. He still writes his character names. He still will not save them as he does with plain white paper, but now at least, he rips them up, one at a time and throws them away. – (say it with me….) Progress!

Baby wipes (or hand wipes): Wipes are used for “Cinderella chores” ; washing the floor and door. This could actually be a good thing if he didn’t use 20 of them to wash the same spot on the same floor and the same spot on the same door. We don’t buy wipes anymore.

Scotch Tape: Scotch tape can be used on anything and for anything. For the most part, it is used to tape up pages in his books. Some books require an entire roll for just the smallest tear. Scotch tape can also be used to build a drum out of a cup or a bowl. He covers the top of the cup or bowl with tape….. a two roll minimum of tape, and this is his drum. Yes, creative, and yes he figured this out by himself but now I have to hide my tape in the cellar if I hope to find any when I need it.

His very own scotch tape is now an item on all of his Christmas/Birthday lists. One friend in particular has been very creative with her gifts of scotch tape. He just loves them!

Scotch Tape: For the boy who has everything!

Pens: No matter how many pens I hide for myself, I can not ever find a pen. He has all of them…… somewhere, I don’t know where and he is not telling. He will return the pens that don’t work – those are always readily available.

Buttons: If there is a button there, it needs to be buttoned. Years ago I thought I was being sneaky by removing the top button on all of his shirts so he would not insist on buttoning everything right up to his neck. I discovered I was not as slick as I thought I was one day when DC brought me one of his shirts to have the button removed. He knows there should be a button there and knows I’m cutting it off, but for some reason this is alright with him. Leaving it on and not buttoning it, is not.

Other clothes: All tags must be removed from all clothing. If he should find the smallest rip, tear or string, he will proceed to shred that article of clothing. It may take him all day, but he will make sure it can never be worn again. Just recently I mistakenly bought him a pair of jeans that had ready-made tears in them. When I realized, I was sure this would be a disaster, but for some reason, it was fine with him. He wears them quite regularly…….. figure that one out. I can not!

Salt: We do not keep salt or sugar on the table. Both are used as fairy dust. There is no other use for salt, except to be used as fairy dust. Crumbs, the cereal dust at the bottom of the cereal box, crushed chips and a number of other items can also be used as fairy dust, but salt is the ultimate in fairy dust.

I’ve been “Fairy-Dusted” many times, so has the kitchen, the living room, restaurant tables and his uncle when, a few years back, DC got his hands on some cotton candy sugar at a picnic (Cotton Candy Sugar = Pink and Blue Fairy Dust; what could be better!) Delightfully he took a very large handful and “dusted” his Uncle’s head yelling;

“Think of a wonderful thought”

Who doesn’t need a little Fairy Dust every once in a while?

His Uncle didn’t get it……..

But really…..who couldn’t use a little fairy dust every once in a while?

(He is better with salt these days, but I will not keep it on the table, it is just too much for him to resist)

Dear Abby – Feeling Chastised in New England

Posted by TakingItAStepAtATime

Let me just begin by saying that since I began writing this blog I have had the pleasure of meeting a few Autistic Adults. They are amazing individuals that do a great deal to raise awareness about autism. I “speak” with one in particular often enough to consider him a friend. He is a wonderful human being and it makes my day to “talk” with him or just read his posts. He is truly an inspiration to parents of children with autism, other teens and adults with autism. But above all that, he is a glowing example of the good things that can be found in today’s young adults in general. I don’t think of him as having autism, I think of him as my friend, plain and simple. I’m honored to have him as my friend.

My son’s autism or level of autism is not like my new friends’. Autism affects each person differently. Therefore, parents should not be made to feel inferior or chastised for their own beliefs. Everyone is different, everyone. There is no right or wrong, when it comes to autism, just a lot of people arguing with each other, it seems.

Today I received this private message on my face book page from a friend of mine who is pretty much in the same boat as I am “level-wise”.

The fact that she did not feel comfortable posting it publicly, speaks volumes about the environment we find ourselves in with the hostility that she (and I) knew would have ensued had she posted it publicly.

(The following message is used with permission. The names have been changed to protect the innocent)

Dear Abby (Vickie)…I think I’m missing something. Why is it wrong to feel like I’ve lost something in having an Autistic son? Why are we supposed to not want a “cure” or something that helps them handle this world we live in a little better? I look at the video of Bob from birth to 18 months and there were signs, but he was still there. It was June of 1996 – he was 18 months old – all of a sudden he disappeared. He is lost to me. He will never have a normal life. He will constantly need care and supervision. There are many people that are on the much higher functioning side of the spectrum that can navigate the world today. Bob is not one of them. Why am I supposed to not want that to be different? People say you don’t miss what you never had – but I know what could have been. I know what life he could have had and now for sure will not. He will find happiness somehow; he will be as productive as his disability allows him to be. But the sky is not the limit for him. The opportunities for him are not the same as they are for my daughters. Why am I supposed to celebrate that? With all this hullaballoo about celebrating autism over the last few months, I’ve been feeling like a minority. I think these kids are lost – lost to the life that could have been, lost to the possibilities that would have been. I feel they have a disability because they are “not able” to process and handle what happens in life the way others do. Why are we getting lost on the rhetoric? Am I missing something Vickie?

Feeling Chastised in New England

I have said this many times and in many different ways:

I celebrate my son as an individual
I celebrate my son because he is my son and I love him more than words could say.
I celebrate his accomplishments, no matter how large or small they may be.
I celebrate him because he is wonderful.
I do not celebrate the part of his autism that will keep him from being safe and out of danger.

I write stories about my son because:

He is wonderful.
I’m very proud of him.
I’m very proud of his progress.
He makes me laugh every day.
He makes me smile every day.
He makes me worry every day.
I believe these stories shed a little bit of light on autism and the way his mind works – not all autism, but his.

I don’t believe anyone should be made to feel “less than”. I don’t consider my son “less than” but there is an issue. There is that life he could have had. Maybe it would not have been a better life, maybe it would have been, but at the very least he would have been able to understand it and navigate through it.

Individuals should be celebrated, not the diagnosis.

Like “Feeling Chastised”, my son will never be able to live on his own. He will never be able to take care of himself. He will not know when/if he’s being taken advantage of. He does not understand danger or safety. He is verbal but really not able to communicate if something might be wrong.

My suspicion is that many of these parents in celebration have younger children or children that can function at a higher level than mine. They still have hope of great progress, and they should have hope, there is always hope. I still have hope for more progress, but living in the real world I know that even though he continues to make progress, none of the issues listed above will improve enough that I will not spend every day and night worrying about what will happen to him when I am gone. This is the stuff our nightmares are made of. What’s going to happen to them when we’re all done celebrating autism? Our “kids” are going to outlive us, people. Who’s going to take care of them? Will they be cared for in the same fashion that we have cared for them? How drastically will their life change then? Think about it.

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?

When your child with Autism becomes an adult with Autism and your own mortality begins to slap you in the face, come back and talk to me then about this celebration we are supposed to be having.

Those of us with adult children that will not be able to live or navigate the world with out constant support, that have been in the trenches for many years, long before there was a “spectrum”, long before there were many of the services available today, deserve a little bit of respect and deserve to be able to voice our opinions as you are allowed to voice yours; to want something more than a celebration.

I believe in raising awareness. I believe in trying to make people understand Autism. I believe that INDIVIDUALS and accomplishments should be celebrated. I also believe some of us need more than that.

My only wish is to be able to die in peace knowing my son will be okay…….

There’s No Place Like Home

Posted by TakingItAStepAtATime

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)

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

For Sami, Love Daddy

Posted by TakingItAStepAtATime

In 1992, when Sami, who has Down syndrome, was 18 months old, her father, Rich, was the Senior Producer for the Sony JumboTron in Times Square. He began producing a series of spots to raise awareness and acceptance of people with Down syndrome to run on the JumboTron during Down syndrome awareness month. He continued to produce these PSA’s on his own until 1994, when he contacted Emily Perl Kingsley.

Emily is an Emmy award winning writer for Sesame Street, the author of a wonderful essay entitled “Welcome to Holland” and a personal friend of Big Bird. She also has a son with Down syndrome.

Emily Kingsley immediately saw the value in what Rich was producing and through her contacts involved NDSS. Together they produced spots which included children with Down syndrome from all around the country.

The response was overwhelming! All of the featured children and their families from 25 different states came to New York City to view the spots on the JumboTron in Times Square.

As there was so much interest that year, NDSS held an event in Times Square where all the families could gather to watch the video. A wonderful reception followed at Sardi’s for all the families that made the trip.

In 1995, as a result of the success of this event, the NDSS Buddy Walk was born. Again families gathered in Times Square to watch the presentation and then headed up to Central Park for the Buddy Walk.

This year Sami, now 22 years old, returns to the Square for the event that was created because of her and the love of a father for his beautiful daughter.

“In my heart the event will always be “For Sami Love Daddy”

– Which is how Rich tagged everything he produced…….

Sami with her “Best Buddy”, Chloe were featured in the Bright Lights of Times Square in New York City on September 21, 2013.

Sami and Chloe watching themselves on the screen

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.