First Day of “College”

Posted by TakingItAStepAtATime

I had already decided which old post I was going to re-post for Finish the Sentence Friday’s “Share an Old Post” when I came across this status in my Facebook memories from 8 (gulp) years ago and decided (being that it is so timely) I would share the post related to the “college” status instead.

From the “Everything is Related” series:

Everything is Related – Toy Story

– Everything being related, many times, is the ability to relate one movie or actor to another. This has helped him to be more open to watching something that may not be Disney-based. This was not always the case, but now he can go and enjoy a movie with his friends or at an ARC activity without issue……..

–Everything being related, oftentimes just explains his love for a particular city, game, song or some of the many other things that he does or says.

–Everything being related, has, many times been used as a learning tool. “

This post is about just that…

DC as Woody and Candy as Jessie from Toy Story – Halloween

Again we start at Disney. Disney, Disney, Disney anything Disney. When the first Toy Story came out way back when, I wasn’t sure DC would really go for it at all. Yes, it was Disney, but it was not the Disney he was used to. There were no princesses, no castles, no Haley Mills and most of all, no music. Of course I know that there was music, but not the “Hollywood musical” type of music – characters would not be belting out a song at the drop of a hat. DC was never a “toy” kind of kid. He never really liked or played with toys, so the toys in the movie were nothing that he would be familiar with. But, to my surprise, he loved it AND the two that came after. This boy who does not like toys actually owned a Woody, Buzz, Mr. Potato Head and a Jessie. No, he did not want to play with them, he just wanted to own them.

Tom Hanks brought him to “The Polar Express” and of course “Saving Mr. Banks” (also related to Mary Poppins).

Tim Allen…..Tim Allen….. he loves Tim Allen. That love brought him to “Jungle to Jungle”, all of the Santa Clause movies, “Christmas with the Kranks” and “Home Improvement” (yes, woo hoo, an actual TV show)…. but there is more…..

When DC was younger, transitioning into a new school was never easy, but it did seem to be easier on him than some of his other friends (and me). “School age” for Special Education here is 3-21 years of age. So there were many moves and many transitions during his time in the school system – kindergarten building to elementary, to middle school, to high school. The school handled these transitions very well. They started early with many tours of the new school, picture books with photos of the classroom and other areas of the school and a few visits (orientations) with parents. DC was always anxious about these moves but he always did rather well due to all of the work the school system and I put in to make the transitions go as smoothly as possible.

The number of children in SPED in DC’s age group seemed to be much larger than the kids moving up in previous years. This meant that the schools they were moving up to had a lot more students to accommodate at one time than ever before. We always joked that our kids always seemed to be the “test subjects” for these new or expanded programs. At times this did not go well.

When DC was in his junior year, I started looking at alternate programs for him to attend for his last two years of school. DC would walk with his class at graduation at the end of his senior year (at 18) and then either spend two more years in the high school or I could have him out-placed into a different program that focused more on getting him ready for the next phase – a work/day program and life. I already knew I did not want him in the high school for another two years and I was already leaning towards another program the next town over. Mid-senior year, the high school announced that they were creating a transition program of their own in conjunction with a local university. It would be up and running in time for our kids to start that September. The program they came up with sounded wonderful but, our kids would be the first ones through and again the “test subjects”. This worried me.

On the other hand, I was torn because it had only been over the previous couple of years that DC recognized “friends”. He had real friends. Not just the children of my adult friends, but real friends. People that HE considered friends. Friends that he did things with and wanted to do things with. DC had always gravitated more towards adults and with the exception of his friend of many years, BB, he did not pay much attention to kids his age at all. I didn’t want him to lose that connection. I rationalized that “social skills” were one of his major issues and if I tried this program and really did not like it, I could always move him to the other program I was looking at earlier.

Putting this program together was a long process. Obviously there are many legal issues to address when creating this type of program. By mid-summer the other parents and I were beginning to panic that this program was not going to be up and running by September. Fortunately by August it was a go, but they had lost all of that transition time they would have had during the school year. We did get to visit a few times before the school year started and I did talk to him about it all summer. Some of my friends children have siblings that went off to college so in turn their children expected to go off to college too. DC doesn’t think like that. He doesn’t have any expectation of what should come next. He lives in the ‘now’ until the ‘now’ changes to a new ‘now’, but we were calling it ‘college’ for everyone’s benefit. “College, College, College” he was going to college. I was still worried, having missed all of that transition time.

Toy Story 3 had come out right around this time. We bought the DVD and watched it at some point during that summer. It didn’t even occur to me while we were watching it or even up to the point when DC was standing at the front door waiting for the bus on the first day of school, that he made a connection in his head with the movie…..

He turned to me and said “Mom, I am going to college, just like Andy in Toy Story”

….. and he was.

With that, everything was just fine.

****

This has been a Finish the Sentence Friday (5th Friday of the month) post –

Share anything previously written! Post an old post for some new eyes, write something new and link that to an old one…

Hosted by Kenya G. Johnson of https://www.kenyagjohnson.com/

and Kristi Campbell of https://findingninee.com/

Everything is related – Toy Story

Posted by TakingItAStepAtATime

The second in a series of “Everything is Related” entries:

Everything is related; from an earlier post – Everything is related – Mary Poppins to New York City:

– Everything being related, many times, is the ability to relate one movie or actor to another. This has helped him to be more open to watching something that may not be Disney-based. This was not always the case, but now he can go and enjoy a movie with his friends or at an ARC activity without issue……..

–Everything being related, oftentimes just explains his love for a particular city, game, song or some of the many other things that he does or says.

–Everything being related, has, many times been used as a learning tool. “

This post is about just that…

DC as Woody and Candy as Jessie from Toy Story – Halloween

EVERYTHING IS RELATED – TOY STORY…..

Tom Hanks brought him to “The Polar Express” and of course “Saving Mr. Banks” (also related to Mary Poppins).

The number of children in SPED in DC’s age group seemed to be much larger that the kids moving up in previous years. This meant that the schools they were moving up to had a lot more students to accommodate at one time than ever before. We always joked that our kids always seemed to be the “test subjects” for these new or expanded programs. At times this did not go well.

On the other hand, I was torn because it had only been over the previous couple of years that DC recognized “friends”. He had real friends. Not just the children of my adult friends, but real friends. People that HE considered friends. Friends that he did things with and wanted to do things with. DC had always gravitated more towards adults and with the exception of his friend of many years, BB, did not pay much attention to kids his age at all. I didn’t want him to lose that connection. I rationalized that “social skills” were one of his major issues and if I tried this program and really did not like it, I could always move him to the other program I was looking at earlier.

He turned to me and said “Mom, I am going to college, just like Andy in Toy Story”

….. and he was.

With that, everything was just fine.

“Hi, Mom! Did you have a nice day?”

Posted by TakingItAStepAtATime

Many of you may know that DC is obsessed with food. He has breakfast and he is already worried about lunch. After lunch we move on to:

“Dinner is later after that” – he always seems to add “after that” when he talks about “later”.

He must give me his breakfast order before he goes to bed every night. There is never anything different about his order from one night to the next, but he feels compelled to tell me every night before he goes to bed.
There were a few times (very few) when DC forgot for one reason or another, to remind me of his breakfast order before he went to sleep. On those occasions, he came into my bedroom to wake me up in the middle of the night so that he could give me his breakfast request.

Most days, when I get home from work DC does not even say hello. He gets his wallet, holds it open and says “Only two dollars”. This is his way of telling me that he wants money for lunch at work the following day (and for some reason, there always seems to be two dollars left in his wallet).
His only concern at that moment is his lunch the next day.
My reply is usually “Hi, Mom! How are you? Did you have a nice day?” – at this point he realizes that he did not even say hello before asking for money, he says hello, but then gets right back on the subject at hand – his wallet.

We run through this same routine very often…..

…………………..until the other day, that is.

DC came over to me, with open wallet in hand, as usual.

But instead of telling me that he only had two dollars, he ran through every greeting he could come up with all in one sentence as if he was just trying to get it all over with. It was such a monotone, run-on delivery, that it took me a second to understand what he doing:

“Mom, how are you feeling, hello, nice day, yes, nice to see you, good day, happy, hi there”–

Then when he ran out of random greetings……

“Mom, only two dollars”

Just Who Is This DC That You Speak Of ? – One Year Anniversary

Posted by TakingItAStepAtATime

Happy Anniversary

It has now been full year since I began writing this blog. Over the course of this year, a few friends have asked, among other things, why I call my son “DC”.
DC is not my son’s name. This is confusing to my friends because I do post this blog on my personal face book page. Obviously my friends on my personal page know my son’s name, they know our last name, they even know where we live. BUT because this blog is public, and is shared on a number of accounts and networks via WordPress (not via my personal page), I do not use his real name, our last name or our location.

My personal face book page is set for “friends only”. Nothing I write about is anything that my friends don’t know or haven’t heard about DC. I am very proud of my child, as I am sure my friends are very aware of. 😃

As for my other accounts; they are set all up using my first name only, no location. I am sure if one tried hard enough, they may possibly be able to figure out what state we live in, but really not much else.

My Instagram account is not only first name and no location, but it is also private. 95% of my followers and the people I follow there are other autism parents and CharityMiles friends. Quite honestly, they are all wonderful people and I really would not have much of a problem divulging our location or last name to most of them. A few do know Dc’s name and that is fine with me. There I see compassion, camaraderie and the support of each other, that I really don’t see anywhere else. We all seem to have different opinions, but we all seem to embrace our differences instead of attacking each other.

Another question that I am asked every so often is why I write a blog.

I never really intended to write a blog. My blogging began one day when I was writing an extremely long response to a blog post that I had just finished reading. After I hit “post” I decided that writing a response to this post on someone else’s blog was not going to make me feel better about the topic being discussed. I opened an account with a local on-line news publication and pasted the response I had just written onto a blog page and published. After a month or so and only a couple of posts; finding the local publication blog not-so-very user-friendly, and because it was local, I felt I could not share it anywhere else and still remain somewhat anonymous, I moved to Word Press. I was so worried that I would never have enough to say to sustain a blog, but I went for it anyway. It turns out that I do have a lot to say. I don’t know how many people care to hear what I have to say, but I say it anyway.

Originally, I did not even post the blog on my personal Face Book page, only on my “community page”. Before posting it there, I went through 3 years of posts on the community page and it’s accompanying website , deleting anything that could be considered too “local” of a story. I wanted to be sure that our location was not too apparent AND that the names and locations of the people featured in these now deleted local stories were also not on display.

(I have just discovered that there is a way to post local news and events on that community page to a specific audience, so I can begin posting local events and news again.)

I did begin posting the blog to my own page at the urging of a friend. No, I am not naïve enough to think that private postings or ‘friend only’ postings are really 100% private, but I have taken all of the precautions I feel that I can and I am always looking for others. I will continue to call my son, DC and write about “a local theater”, a “local college”, a “local baseball league” or a “local ice cream shop”.

I read many blogs as well. Many of the blogs that I do come across are written by parents of younger children. Most are wonderful and very informative. There are many that I absolutely love, but I always feel that the parents of adult children do not get to have an equal voice in this community. We are cast aside, or worse, berated. I am not in any way saying my blog is the voice of parents with adult children, I don’t think there are enough people that actually read it, in the first place, to even consider that, but I am ONE voice and ONE opinion in a sea of blogs and opinions that do not seem to make room for the parents that have been at it for many years now.

I was very tired of being preached at by those who have not reached this point in their child’s life and constantly being told how to feel. I understand where they are coming from and in turn I believe they can or should try to understand where I am coming from. Whatever else you might have to say about me, I have done a good job of raising DC. Of course there was help along the way but as a single mother going on 21 years now, most of it fell to me alone. I truly resent the fact that we, as parents are being made to feel as if after all these years, we’ve got it all wrong.

I’m hoping a little insight into what comes after “school age” may go a long way in getting people to stop and think before making blanket decisions, accusations and statements that may not affect their child the same way it will affect mine (more about this at another time). There has got to be some give and take. Everything is not good for everybody.

Having said that, I have learned quite a bit from other parents by virtue of this blog. I don’t always agree with every opinion and my readers, I’m sure, do not always agree with me, but I truly believe writing this blog and getting some of the feedback has helped me see some issues a bit differently or at least why some parents see things the way they do. I can only hope I can and will be afforded the same courtesy; and so far I have.

Life tends to be very different when your child “ages out”of the school system and at other times, it is exactly the same. When you are waist deep in school, therapies, programs and IEPs, what happens after 21 is not high on your priority list. Of course it is a priority and of course it is in the back of your mind but, the here and now takes precedence. There are so many new and different issues to consider, and it all comes to hit you in the face much faster than you expect. Your views and opinions can change dramatically from what you hoped for when they were young and what you hope for now. Your life changes drastically, while not changing at all.

In an earlier blog I wrote:

“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?”

He will, someday have to live in the real world without me.

So I will keep writing with the hope that a few people might read and think a little bit about the future. I would never say that spreading awareness is not a good idea, it IS definitely necessary, but…..

all of the awareness in the world is not going to keep DC safe and happy when I am no longer here to protect him…..

Don’t Forget to Call Mom

Posted by TakingItAStepAtATime

Don’t forget to call Mom

There are many times, even at this point that I really do not know if DC really understands certain things or if he is just going through the motions; the motions that were taught to him. There are other times that I am surprised to find that he really does understand, even if he is using one of his scripts to communicate it. It is not always easy to tell the difference. I don’t think it will ever be easy, but I do not think that using the telephone will ever be one of those things he completely understands.

I have worked long and hard over the years but DC still has a hard time using the telephone. To begin with, he just doesn’t like it, he doesn’t. When he was younger, he couldn’t even bear to have the receiver on or near his ear. He has always had a very low tolerance for anything having to do with his ears, so using the telephone or just listening to someone that wanted to say hello to him was just unbearable for him.

Secondly, as I stated above, I really do not think he understands it completely. If he dials incorrectly, he doesn’t understand that he should hang up and dial again, he just keeps dialing. I finally got him to the point where he could tolerate the phone on his ear. He has memorized our phone number, but as he doesn’t always understand the question “What is your phone number”, I don’t know if he would be able to give it to anyone if he needed to. He does know how to call me.

He is still not all that thrilled about using the telephone, though. If he does get a call, it has to be brief. When he’s had enough, he will say nothing and just hand me the phone. I have to tell the party on the other end (who is usually still talking to him, not knowing he’s passed off the call to me) that DC is done talking. Not very long ago when he was talking to his father, he handed me the phone when he decided he was finished, as usual. I handed it back to him and said “DC, you have to say good-bye to people on the phone when you are finished.”

He took the receiver back and said “Goodbye to the people”

He does have an iPhone now. He knows how to use it. He is very good at using iTunes and YouTube, but still the phone part of it is difficult. He is supposed to call me on my cell phone when his transportation arrives to pick him up from work; he does, but it is a script.

“Hello Mom”

“Hi, DC. What are you doing?”

“I am going home Nowwww”

He says this the same way in the same tone, with the same emphasis on the “Ow” in “now” – every day.

“Did you have a good day?”

“Great”

“Okay, call me when you get home”

“Okay”

When he gets home he is supposed to call me from the house phone because I want him to know how to DIAL my phone and memorize my cell number as well.

He does call just about everyday. There were and still are a few days that he forgets and I have to call him. Hearing the phone ring, must remind him he has forgotten to call me so instead of just answering the phone, he picks it up and dials my number while I am on the phone, and then goes though his “at home” script. If for some reason it is not me calling him, the person on the other end gets the script and then he hangs up.

“Hi, Mom I am home”
“Hi DC, is Mrs. H there?” (she has already texted me to let me know she is there)
“Yes”
“What are you going to do today?”
“Go to ____” (enter, Library, Track or whatever activity depending on what day of the week it is)
“That sounds like fun. Okay, I will see you in a little while”
“Okay, Goodbye Mom.”

He does not understand voicemail or answering machines, even though I let him listen to mine and try to explain what it is, I just can’t seem to come up with an explanation that he can understand. If he does leave a message on my phone, I don’t think he realizes he is leaving a message, he just goes through his script and hangs up, thinking I must not have a lot to say that day???

He will not use the phone spontaneously. This is something I really want him to understand. I want him to think to call me if something is wrong or if he happens to get lost or for any reason at all. I want it to occur to him if something goes wrong, that he should use his phone. I really am not sure that it would occur to him. I’ve gone over this many times, but as many times as he says he understands, I don’t think he does. He has never called anybody spontaneously, he has just about never asked to call anyone. After all this time, he still only uses the telephone when he is told to, to call me from his transportation and to call me when he gets home.

We’ll keep working on it….

A few days ago, I had to leave work early for a dental appointment and then a doctor appointment. The appointments went quickly, so I was home before his aide arrived to meet him after work. He called me from the car as usual. When he arrived home both his aide and I were there. I was talking to Mrs. H in the kitchen. DC came in, he said hello to me and Mrs. H and gave me a hug.

Mrs. H and I were still talking in the kitchen, while DC went into the living room, I thought to have his snack “alone” (he likes to be alone when he has his snack). My cell phone, which was charging right in front of the phone in the living room, started to ring and I said “I’ll bet he’s calling me”.

From the kitchen, I asked:

“DC, what are you doing?”

“Hi, Mom. I’m home” (from the living room talking into the phone, probably to my voicemail).

When he is doing what he was told to do, I try not to do anything to throw him off or make him forget to call me the next time, so I went with it.

“Is Mrs. H. there?”

“Yes”

“What are you going to do today?”

“Go to the Li-ber-ary”

“Okay, I’ll see you in a minute”

“Okay, Mom, see you later!” and he came back into the kitchen.

Yes, Rule – followed……

but there is still some work to do………………….

Don’t Judge What You Don’t Understand

Posted by TakingItAStepAtATime

There is a convenience store in our town that my son and I stop in pretty regularly. The employees are very nice to him. One in particular seems to be very interested in him and his diagnosis and really goes out of his way to try to talk with him.

A few weeks back, there weren’t many customers so he began asking questions about him. I never mind when people ask questions; I’d rather they ask than stare or shy away from him.

One thing led to another and he began to tell me that they do not have the system that we have in his country. In his country the families take care of their disabled children. He proceeded to say (which I’m sure he thought was a compliment) that I take care of my son, but other customers who come in with disabled children and adults ask for receipts for what they are buying.

I really didn’t understand at first what one thing had to do with the other but he explained – “I ask them why they need a receipt and they tell me it is for the child/adult’s father or some company”.

In the first place, why would he ask anyone why they needed a receipt? And then why would anyone feel obligated to answer that question?

He proceeded to tell me again that, in his country, the families take care of their own children. He automatically made the assumption that if someone else is with your child, a staff person, or a person from a group home that the parents are not taking care of their own children!

Immediately the pointing finger came out (I really have to learn to control the “finger wagging”) and I said “Oh, no. Do not judge people because someone else happens to be with their child at that time!”

I tried to explain to him that, in my case, my son has been with me and I have done just about everything for him all of his life but now I too have staff people with him a couple of hours every day after he gets home from work because he needs to learn to be independent from me. I don’t like it at all, but I know it’s the best thing for him. I’m always convinced that I am the biggest detriment to his independence.

Unfortunately, I didn’t get to finish my speech as customers were coming in and I could see that he was getting uncomfortable because he thought he’d offended me, which he did. When people make those kinds of assumptions whether it be about me or not, I DO take offence. I suppose I just could have let him believe that I was not one of those “awful” people pawning their child off on someone else; he would never know any different, but I just couldn’t let it go.

Partially, I think I react that way because I DO feel guilty when I am not with him. All I was looking for when all of this began was some type of program after school so I didn’t have to continue cutting my hours at work to make it home before he arrived from school. I’ve been a single mother for nearly 20 years, and I have to work; fulltime, always have, it’s only me supporting us. What I ended up with was staff hours for life skills, community, and activities. And yes, I know it’s the best thing for him, but after 3 years with this staff (they are wonderful, don’t get me wrong), I still feel guilty. His staff is only here from 3pm – 5pm, and then they accompany him to some night activities as well – activities that I would normally have taken him to. But, I feel like I’m being judged by people, my neighbors that weren’t living here all of the years that it was just me and just people in general who have no idea what this is all about, like the man in the store.

I wanted to ask the cashier just what happens to the children is his country when the families are gone or too old to take care of these children? They’ve been sheltered all of their lives, what becomes of them? How to they adjust to having no one? I don’t know anything about his country, I don’t even know what country he is from, but I feel that here, at least in this house, we are not trying to shelter our kids by just keeping them safe and out of the way and never learning or experiencing life, the best life they can have. I am hoping to help him become as independent as he can be and if that means letting someone else take the reins for a couple of hours a day, then that’s what I am going to do.

I know he’s not a bad person and I was sorry I made him feel uncomfortable, but I am really hoping to finish this conversation one day and hopefully make him see that he should not judge what he does not understand and maybe even change the way he perceives “these parents” (myself included)…… ……….