“Look in the mirror and spit cookies”

"Look in the Mirror and Spit Cookies"

“Look in the Mirror and Spit Cookies”

One of my greatest fears (one of them; I have a million) is DC having something medically wrong with him and I won’t be able to tell.

Unless he has a fever,  throws up or passes out right in front of me (try catching a 200lb boy at 3am) there is really no way for me to know.  He doesn’t really let on that there is a problem and when there is, his behavior is pretty much the same as it always is. I don’t know if he doesn’t feel pain like the rest of us or he just doesn’t process it the way we would expect.  This boy can run full speed with a sprained ankle!

When he was younger, he would “tell” everyone that he was sick; actually he would just sign “sick” with no other details. Most of the time he was not sick at all, but he knew the school nurse had jellybeans in her office so that is where he wanted to be! Then he discovered when he was finished with the jellybeans that they would call Mom to pick him up. Most of the time, knowing that he really wasn’t sick, I would pick him and bring him to work with me – which he loves, so I wasn’t really winning any battles there, but I had to work. (We’ll forget about the ONE time, he threw up all over my office, the ONE time he really was sick and no one believed him. I guess he showed us!)

On the few occasions that I did suspect that something might be wrong, I had to resort to asking him questions that I hoped he would respond with a “No”. The more ridiculous the question, the better. Because he answers “yes” to everything, I can’t lead him to an answer by asking;

“Does your head hurt?”

“Yes”

“Does your stomach hurt?”

“Yes”

If I ask him more than once, all of his answers then become “no” because he thinks he’s giving me the wrong answer.

So I have to ask “Do your eyebrows hurt?” or “Does your hair hurt?” By asking him this sort of question, he thinks it’s funny, gives me a “no” and then he understands the question and sometimes even tells me what hurts.

Because I had to do something about his daily jelly bean pilgrimage to the nurse’s office, I stopped taking him to work when they called. If he was so sick that I had to pick him up, he had to go home and rest. That ended that game, but now he won’t tell me anything at all because he’s afraid he’ll have to rest or worse…. go to the Doctor!

There was one time when he did tell me…..

Well, sort of…

One night he ran by me on his way upstairs. I asked him what was wrong and where he was going.

“Look in the mirror and spit cookies” and he ran upstairs.

After a very confused few seconds, I realized that a few months back I went upstairs and found a disgusting mess in the bathroom sink. It was apparent that DC was sick (evidence! YES!) But instead of telling me he just went to “listen to the music” in his room.

I realized that “ looking in the mirror and spitting cookies”  was his way of telling me he was going to be sick, because that last time, he was in front of the sink, in front of the mirror and he had eaten cookies!

I was right and yes, this is the way my mind has to work to be able to figure anything out.

I’ve told him so many times that it is very important for him to tell me when something hurts. Mom might have medicine to make it better; it doesn’t always mean a trip to the doctor. We have this discussion at least once a week. I didn’t think I was getting anywhere.

The other morning I heard, “come here please”. I went upstairs and said “What’s wrong, DC?”

“I need your help”

What do you need me to help you with?

“Nothing, I love you” (I didn’t find it all that odd because he calls me upstairs quite often to tell me he loves me or to tell me what he wants for breakfast the next day).

I went back downstairs. He came down looking a little out of sorts. I asked him again what was wrong.

He proceeded to tell me, not in the words you or I would use, but he told me! Luckily I had medicine to fix it! He was okay in about 20 minutes.

So I’m hoping that he’s realized that he can tell me and sometimes I can fix it and it doesn’t always mean resting or going to the doctor. I’m also hoping this means if something is bothering him enough, he will say something, which is a little bit of a load off my mind.

Just one small step in the right direction……..

Advertisements

Communication, Paper Towels and other nonsense

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

DC Rule
1 Towel

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.

For Sami, Love Daddy

Chloe and SamiIn 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…….

For Sami

 

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

Sami and Chloe watching themselves on the screen