The End of The School Year

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DC has been out of school since 2012. He walked with his class at the high school in 2010 and then moved on to the school system’s Transition Program for the two years between 18 and 21 (“school age” in this area is age 3 to 21 for SPED students).

The tiny boy with the bigger than him Barney lunch box seems like forever ago and not that long ago at all.

When, as the parent of a SPED student your life is pretty much all encompassed by the school system; IEP’s, therapies, fighting for everything (oh, the fighting), it is very difficult cutting the cord when it is all over.

Yes, there are still meetings – we call them IP’s now (no E for Education) and there is still the paperwork (which has more than doubled) but it was really a rude awakening. It took a few years for me to stop panicking when winter, spring, Christmas school vacations came around thinking I did not have a plan for DC, only to realize I did not need a plan because he was out of school and his program was year-round.  It was very hard to make a break from the school calendar.

I remember going with *Salli’s mom (and our caseworker) to look at the many Group Supported Programs in the area, trying to find a good fit for DC and *Salli for after they aged out of the school system. We saw many programs, good and bad.  I specifically remember coming home each week feeling drained and depressed. I did not say anything at first because I really just thought it was me being overly emotional until *Salli’s mother said the same thing to me one day. There was no more “school”, no more moving into the next phase in the school system – we were looking at the rest of their lives. This was it. This would be their life.

It just hits you in the face.

We have adjusted though, it was a long adjustment period but we have made the adjustment. Now I find myself oblivious to the last day of school and anything related to school.

I remember getting a message from one of DC’s friends and explaining, when I answered him later that day, that I did not want to reply while he was still in class.

DC’s friend: “It’s July. It’s summer vacation”

Yes, I am now officially oblivious to it all….

Except for the bus. I do, at times still call DC’s work transportation  – the bus.

Me: (Answering DC’s daily “I’m going home Nowwwww” phone call to me) “Are you on the bus?”

DC: No!

Me: (panicking a little) Where are you? Aren’t you on the bus?

DC: No!

Me: (panicking more) Where ARE YOU!

DC: In the car.

His adjustment is complete.

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Finish the Sentence Friday is a link-up where writers and bloggers come together to share themselves with a particular prompt (different formats each week of the month). Hosted by:  Kristi Campbell of Finding Ninee and Kenya G. Johnson of Sporadically Yours this week we are finishing the sentence, “It’s the end of the school year, and…”

What my nightmares are made of…

This week’s Finish The Sentence Friday prompt is: “I’m really afraid that/of…”

If you have been around here for any length of time, you know all too well what my nightmares are made of.

Dying, of course. I am sure that most people could say that they are afraid of dying, but when you have a child with autism, fearing your own death takes a whole new turn.

When DC was young, my greatest fear, being a single mother (and before that, having a husband that worked nights) was something happening to me and worrying about just how long it would be before someone/anyone realized that DC was alone.

And then he grew up….

As I have written about this subject many times, I am just going to give you excerpts of some of the previous posts that were written about this subject.. He is 26 (almost 27) now.

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DC is 24 years old. He is a happy guy.  He has a good life. He is the joy of my life. But even with all that he has accomplished the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings. Even though his father and I have taken steps to be sure he is provided for, and have designated guardians in the event that anything should happen to both of us, those people are all my age or close to it. He will long out live all of us and realistically I should be looking at people his age, but I really do not have any options in that age group – again, he doesn’t have brothers or sisters. He will probably have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers. This is devastating to me. It is what keeps me awake at night.  It breaks my heart already.

He deserves to live the rest his life just as happily as he lives now; and that is the one thing I cannot promise him.

From: Insert Colorful Metaphor

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When your child with Autism becomes an adult with Autism and your own mortality begins to slap you in the face, it becomes a whole different ball game.

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?

From: Dear Abby; Feeling Chastised in New England

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If this is not enough to worry about, there is the other issue of him really not understanding death:

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On the way home from my mother’s house the night my step-father passed away, I mentioned to Doug that I still was not really sure that DC understands what death means and how much I really want him to understand it.

Doug asked me why it is so important to me that DC understands. Why couldn’t I just let him believe what he believes, the way he believes it and leave it at that?

I understand that thought process. I understand wanting to protect him from anything bad or sad, I do. So why is it so important to me that he does understand?

“Because one day I am going to die and I want him to understand that it is not something one wants to do.  I never want him to think that it was my choice. I NEVER want him to think that I just left him.”

  From: Understanding Death it not like a Disney Movie

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This has been a Finish the Sentence Friday Post. This week’s prompt: “I’m really afraid that/of…”

Finish The Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular prompt (different formats each week of the month). Please visit Kristi or Kenya to read more submissions on “I’m really afraid that/of…”

That year we weren’t home for Christmas..

 

The holiday season is here and I will admit to having a bit of a Love/Hate relationship with holidays in general. I want to love them, I do, it just does not always work out that way.  I have reached the age where I should be able to place a 2 or 3 foot silver Christmas tree on a table somewhere and have that be the end of it, but I may never achieve that particular rite of passage because of course, DC loves the holidays.

I am glad he does and watching his excitement does help me get more in the spirit of things (that and watching too many Hallmark Christmas movies).

He is excited, so I am excited for him.

A few years ago we decided to move our then regularly scheduled, first week of January vacation to the week of Christmas just to avoid all of the holiday hoopla.

Did we choose a “Christmassy” destination like those found in the Hallmark movies?

No.

We chose Disney because nothing else could take the confusion out of or help soften the blow of a “different” Christmas than another trip to Disney.

I was still worried that this would not be Christmas in DC’s eyes because Florida is really not the place that comes to mind when one thinks Christmas.

And then I worried about the gifts…

From 2014:

The Christmas Vacation Dilemma

A few days before Christmas, I read a post from another favorite blogger of mine, Mother O’ Jim, titled “When Delaying is Enhancing…” . The blog was about her son’s Christmas anxiety over a gift he knew he was going to receive (give it a read if you have a minute) and the steps taken to minimize his anxiety.

While I was reading this post I was thinking about DC. Although he does get very excited and anxious around Christmas-time, reminding me many times everyday that “Christmas is coming soon” – he does not seem to get as anxious as Jim from the blog.

I was a little bit concerned about this Christmas though. Everything about this holiday season seemed to be different. Thanksgiving is normally spent at a restaurant (the same restaurant) with DC, Doug, my brother and sister-in-law and at times, my niece. This year, my niece had moved out of state a few months earlier and Doug was away on a cruise with his sister and his father. The restaurant even seemed to be different, more crowded and much less organized.

DC’s Dad decided to go to Florida for an undetermined amount of time. He left in mid-November. He would not be here around Christmas for DC and for the first time ever, we decided to take our vacation a few weeks earlier than usual and were scheduled to leave Christmas morning. We had to leave the house by 8:30 in the morning.

DC does understand that now that he is an adult, Santa only brings his stocking. The rest of the gifts are from me (Mom). But, would he understand when he woke up on Christmas morning to only a stocking, even if he received the same big pile of gifts the night before? I explained this to him over and over again and he said he understood. This NEVER means that he really understands.

After reading the blog I spoke of earlier, I got a little bit more anxious about it. Jim was happy to get his gift early as would DC, but I know in his head, this would not – even if he agreed that it would – eliminate the expectation of the Christmas morning pile of gifts. I know this from the many, many times I have given him choices to do “this” or have “this” now instead of later or instead of doing or having something different. He agrees but then still expects whatever he traded away.

I realized that I would have to do more than explain it to him over and over again. I thought about showing him pictures, but then I realized that it would make more sense to him and he would not think he’s missing out if he saw the same pile of gifts just being given at a different time.

So I took a photo of our tree and another of the bookcase where Santa usually leaves his stocking and I usually leave his surprise gifts. Then I cut out photos of presents that I could move from one place to the other so he could see that he would be getting the same amount of gifts, just earlier than usual.

(These photos are not of our tree. The originals were terrible. It seems that every time I need to print – the ink just about gone)

Normally after opening gifts at my mother’s, we come home and DC opens the gifts that are already under the tree. There is usually only a few because he knows he’ll be receiving Mom’s hidden gifts in the morning with his stocking from Santa.

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Gifts from Mom on Christmas Eve

More gifts from Mom and Stocking from Santa on Christmas morning

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More Gifts From Mom and a Stocking from Santa

I had him move the gifts himself, from Christmas morning to Christmas Eve.

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Christmas Eve – ALL of Mom’s Gifts

So…..Christmas morning would be just Santa.

vacaxmasday

(Santa would surprise him with another stocking at the hotel when we arrived, but he was not aware of this yet)

We did this every day until I was as sure as I could be that he understood that he was getting the same amount of gifts… just earlier.

Still I was a little bit nervous about Christmas morning….

He was up very early as usual – this was fine since we had to leave early.
He saw the stocking filled with everything he’d asked Santa for. He was happy, maybe not as excited as he usually is, but he wasn’t disappointed – that had been my biggest concern.

There was enough time to use and play with everything in the stocking and enough time to watch the entire Peter Pan Live DVD he’d asked for.
He never made it through the 3 hour version when it was live on TV, but without commercials, it was only an hour and a half!
I am still not a fan….but this time around, DC really enjoyed it.

As DC would say, “Phew, I was very nervous about this!”

Fortunately, it worked out well and he had a Merry Christmas!

As for me, I am still in search of that Hallmark-like Christmas Town and that 3 foot silver tree remains a dream.

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This is a Finish the Sentence Friday post:

Finish the Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular sentence. This week’s prompt – “The holiday season is coming, and…”

Visit the link at Finding Ninee to read more FTSF posts.

I guess this must be home..

I never felt as if I had a “hometown”. Of course I do, but I don’t have a special affinity to the town where I was born.

We moved away from the town where I was born when my mother re-married. I was five and my brother was 4. We moved away from her hometown to my stepfather’s home town.

We moved four times to different neighborhoods around his hometown while I was in elementary school. First temporarily to a third floor apartment, while they were looking for a house to buy. A brother was born while we were there, so space was becoming an issue.

Next, to a rental house across town, again temporarily, as they decided to build instead of buy. We lived there for a couple of years until the house they were building was completed.  There, in the rental house, another brother was born.

When I was in 3rd grade, we moved into the finished new house. The new house was just one street up from the old neighborhood, but there seemed to be some sort of line of demarcation between the two neighborhoods. It was like a different world and there did not seem to be any socialization or interaction between the two areas at all.

Being from the other side of this line, it was difficult fitting in and by the time I began feeling like I fit in a bit, still another brother was born, making a grand total of 4 boys and 1 girl (me), in case you’ve lost count. So the search was on for an even bigger house.

During the summer before 8th grade, we moved into the larger house all the way across town, in an entirely different school district and an established neighborhood where every one had been living for years and were friends since birth. I was such a drama queen about moving that I was allowed to attend 8th grade at my old school and graduate with my old friends. In the mornings my step-father would drive me to a bus stop. In the afternoons I would walk home from the bus stop and it took about an hour. By the time I made it home, it was close to dinner time so I did not do much socializing in my new neighborhood. I did not want to anyway.

None of this, of course helped to make me feel comfortable in this new neighborhood. I did not hang out there all that often until I had to start high school. Yes, I did eventually make some friends, but I always felt uncomfortable when we had to be around my friend’s friends, because I was the one who didn’t know anyone or remember the stories and/or people they talked about, I didn’t have the same school experiences or memories. Odd man out, that was me.

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Fast Forward: When DC’s dad and I divorced when DC was 3, I moved us to the town where we live now.  I moved him here for one reason, and one reason only; the school system. At the time, this town had the best special education program in the state, so this was where I wanted DC to be. This town was looked upon by ‘City’-burians as affluent and a bit snobby, so the divorced woman with a child, renting (gasp) and working full time (double gasp) did not feel all that welcome. I joked quite often that I was sure I had a ‘City’-bury stamp in the center of my forehead.

Two things that really stand out to this day when I remember our first few years in this town:

 – Watching the local channel to see if there were any Park and Recreation activities would be appropriate for DC. They listed the activities being offered and the subsequent prices. There was a price listed for “Residents” and a separate price for “Outsiders”.  Yes….. “Outsiders”; that was the term they used. Not “Non-Residents” as you would see listed in any other town, but “Outsiders”. At that time, I was technically a resident but I could not help feeling like the “outsider” that they spoke of.  

 – We had been living here maybe a year and a half, if that. I had DC involved in a Special Needs Bowling League. His teacher told me about another activity that DC might be interested in and gave me the paperwork so that he could join. I filled out the forms and brought them to bowling the following week because I knew that they would be taking registrations there. I gave the man collecting the registrations DC’s form and 30.00 cash for the registration fee (a co-worker of mine, who’s son participated in the program told me ahead of time that they did not take checks. I did not know at the time that his wife did not let him write checks, so she probably just told him that they only took cash). Long story short, my forms and registration fee were somehow lost. His teacher called me when she saw that his name was not on the list of registrants and I in turn called the President, whom I had never met before, to explain when and where I turned in his registration forms and who I gave them to. I did give everything to the correct person, I just had his name wrong. (The same person who gave me the wrong cash vs. check information, pointed out the correct person at the bowling alley when I was looking for the person collecting the registrations but gave me the incorrect name for this person. When I say it was the wrong name, I mean it was really the wrong name).    

“I assure you, that you did not give the forms to my ex-husband.”

Yikes! Could this get any worse?

I explained to her that being relatively new in town, I did not know any of these people and this was the name I was given by someone else. I went on to describe the person I gave everything to. She knew who I meant and yes, as I said,  it was the correct person but still, it seemed she had not received it.

“Well, I suppose I will just have to take your word for it, won’t I?”

Sigh….. Fortunately I was much nicer then and I let that go, but it was not the best feeling in the world.

The next day during my weekly visit to DC’s classroom, his teacher asked if I had gotten everything resolved. I told her the story and added that “It must be the ‘City’-bury stamp on my head” at which time she turned to one of the IA’s and said “I didn’t tell her that”. I did not know what was going on at first, but as it turned out, the IA she was speaking to was also from ‘City’-bury. She grew up in the very same neighborhood that I lived in through high school and her father was a guidance councilor in the high school that I attended. I actually worked for him in the guidance office for a few years during my study hall hours.

Apparently, she had used that same phrase and felt the very same way on occasion. I was glad to know I was not the only one with the dreaded stamp on her forehead.

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Fast Forward: We have lived in this town now for 22 years. The original plan was to stay here until DC finished school. Although I could never afford to buy a house in this town, I’m sure I could afford one elsewhere. Not a great house, by any means but better than a 4 room rental.

He has been out of school for 5 years now and we are still here. I have many good friends here now. More importantly, DC has friends here. We like living here. We semi fit in. We are involved in the community.

The woman in the registration story and I became good friends a few years after our not so great first encounter and have remained friends to this day. I wonder if she even ever made the connection between that person on the phone that night and me? I never thought to bring it up.

Although I can still sometimes see and feel that old ‘City’-bury stamp, I do feel as if it is beginning to fade.

So, I guess we must be home…..

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 This has been a Finish the Sentence Friday post. This week’s sentence is “My home town…” 

Finish the Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular sentence. If you’d like to stay ahead of future sentences and participate, join our Facebook group.