These Three

Best BuddiesThese Three…. they are truly amazing. As their parents, my friends and I know this. We know the progress they have all made.  Sometimes though in dealing with the day-to-day, we do not always remember the journey until someone who has not seen them in quite a while points it out.

We lived it all but we tend to concentrate on the here and now and the future – how we got here is not always uppermost in our minds. We deal with today.

Last week we ran into our kids’ Special Olympics swimming coach at a Best Buddies Christmas Party. She was there with another friend of ours. She has recently moved out-of-state so she was filling us in on what she has been up to since her move. She was also their volleyball and golf coach for many years as well so she has been a part of our kids’ lives for quite a long time – since they were very young.

 

As she was watching our kids at the party, she commented on just how much progress they had made over the years. DC’s friends stories are not mine to tell, but her comments about DC made me sit back and really think about just how far he (and his friends) have come. As she watched him socialize in this crowded room she said “Who would have ever thought that he would be able to sit in this room and tolerate the crowd and the noise?”  She was right; attending this activity would not have been a pretty sight back then. Never mind the noise, he would have never been so social with anyone of his own age or anyone but me for that matter. Then there were the times when I really should have just thrown in the towel and not taken him to practice at all. Now-a-days we can pretty much go anywhere with out too much of an issue.

She knew us and she knew our kids inside out. She always went out of her way to make the process as easy as possible for us and most importantly, for our kids. Special Olympics lost a fantastic coach, when they lost her due to her work and school commitments.

SoGolfSoVolleyball

 

These Three have been through a lot both separately and together. We have all hit some potholes along the way; some deeper than others, but for the most part we have traveled this road together. It is nice to sit back and remember this very long journey that they have taken with each other. They have grown into amazing young adults and yes, we know this, but it is always nice to have someone point it out and bring it all back for you.

Although the stories of his friends are not mine to tell,  I will say that I am as proud of them as I am of him. As we live with new and different struggles and challenges, we should take the time to remember just where we all started and all that These Three have accomplished over the years.

There has been so very much.

Sometimes is just takes someone else to help us remember.

And we should remember and we should be proud of all of it.

These Three………….

They are impressive.

They are amazing.

IMG_2649

 

 

 

 

 

 

All the…. small things

stacking Pizza and writing notes

I was talking to a friend of mine the other night at a Winter Guard Event. She was relating a story about how she had written a note to her daughter’s staff listing the items – the only items, her daughter was allowed to purchase that day. Her daughter added an item to that note and handed it in hoping no one would notice the addition.

Of course she was caught because the handwriting did not match, but my first reaction to the story was “That is SO Cool!”. Another friend agreed that it was fantastic. My friend laughed and of course knew that it was really an accomplishment, but you know…..she had to be the mother. She had to at least pretend to be mortified.

Much like when DC stacks 3 slices of pizza on top of each other thinking I will actually believe that he has only one piece -I have to be impressed. He thought it out and came up with that scam by himself – but on the other hand, I have to be the mother and tell him that it is wrong to be so sneaky and to lie.

I told her that if DC tried something like that, it would definitely be a blog post and even though it was not DC this time, a post it is.

This conversation reminded me of an old web-site my friends and I used to run, many years ago – probably 15 years ago when our children were young. One section of the site was titled:

The milestones WE Celebrate

Some might find our celebrations odd, but they are ours. We celebrate every advancement and every achievement, even if the achievement is something that most parents would frown upon – we do not. To us – it is progress.

Some of the following blurbs are mine (DC was very young at the time) and some are from friends of mine, but they were all very important achievements for us at the time.

So…. here are some of The Milestones WE Celebrated many years ago:

Your son whacks his Little League Coach in the head with a bat.  Both you and the Coach are thrilled because this was the first time he attempted to swing at ANYTHING!

You attend your Parent/Teacher conference: Your son’s teacher jubilantly announces that your son and his friend were cheating from each other’s papers. You are as thrilled as she is, because this means he finally realized (on his own) he was supposed to be doing something other than just sitting there – and also figured out, ON HIS OWN, how and where to find out just what it is he was supposed to be doing.

 It was a “bittersweet” morning when I discovered that almost all my “sled” ornaments from the Christmas tree had been crushed on the floor.  We were surprised to discover that my son was the culprit. While we watched,  he carefully removed a sled, (which are many),..gingerly placed it on the floor and then ever so slowly sat on it! I was dismayed that our collection was reduced to only the few left “on higher ground” but thrilled he finally realized what a sled is for!!

My son began saying “shut up” all of a sudden and quite often. I realized that he picked it up from Princess Diaries. I knew he had no idea what it really meant, but still, he continued to say it.
Last night he was in the car with one of his friends. His friend generally starts talking as soon as he gets in the car and the blue streak continues during the entire ride. On this particular ride my son turned to him and said “Shut Up”.
His friend’s mother called me on the phone immediately, very excited because she knew that it meant my son actually figured out what the word meant.

My son loves bread, more than just about any food. A few days ago, a friend of mine baked bread for Christmas gifts. She delivered two loaves to our house, one Cinnamon and the other was a small ‘personal size’ loaf of plain bread. We immediately had to make toast when he saw the Cinnamon bread.  Later, when he was giving me his breakfast order (which he does every night before bed), he requested the “Elf Bread”. Not really understanding what he meant, he went to the counter to show me the little ‘personal size’ loaf of bread – “Elf Bread!”

 

The forging of notes and the stacking of pizza would certainly have a place in the top 10 if we were ever to compile a new, updated list……

Mother’s Day update

I just had to write an update to my Mother’s Day Post from yesterday, Mother’s Day and The Macaroni Necklace”.

DC loves to draw and he does draw quite a few pictures for me. His favorite subjects are flowers, cakes and once in a while,  pizza. He draws pictures for me for no reason at times but usually his “Flowers for Mom” drawings are reserved for the times he thinks he is in trouble and the times he IS in trouble. When you see “Flowers for Mom” pictures laying about when you walk into my house, chances are DC is in trouble for something. He never draws for a holiday or birthday, unless it is suggested to him.

Less than 12 hours after I wrote..

“His mind still doesn’t go to “Hey let’s make Mom a card or a gift for Mother’s Day”, DC woke up and the very first thing out of his mouth was, “Happy Mother’s Day, Mom!”.

We went to the kitchen and I started making coffee,  I turned around and there was DC at the table drawing.

He stopped when he saw me look at him as if I wasn’t supposed to see; “Sorry, Buddy, I won’t look”, and he continued on.

A few minutes later he presented me with this picture, with no prompting and no one to tell him it what a good idea it might be!

Happy Mother's Day!

Happy Mother’s Day!

Less than 12 hours after I wrote…..

Such a difference from the boy who didn’t know it was a holiday or didn’t  know that he should give me the gift that he made in school sitting in his back- pack to the “man” who just can’t wait to make me happy with his gift!”

there was more…………….

Happy Mother’s Day!

 

Mother’s Day and The Macaroni Necklace

Macaroni

Macaroni

My only Mother’s Day gift wish when DC was little was a macaroni necklace. You know, the macaroni necklace that every child makes for their mother eventually, for some occasion or holiday or for no reason at all. I think I remember making a few of my own when I was a kid. I really wanted a macaroni necklace! Unfortunately,  there was no one that was going to help him do this, with the exception of me, of course,  but that would not be the same. In other families if there was not another parent or sibling to make the suggestion and help with the project, eventually the child got old enough to come up with the idea as we all did when we were young, on his own. I knew that this was also something that was not going to happen in the foreseeable future, at least.

I know it was an odd thing to be fixated on, with so many other things to worry about, but it really made me sad that  my son was never going to make and present me with a macaroni necklace. I talked about it all of the time. Whenever my birthday or a holiday came around, my friends would have to listen to me whine about the fact that I would never have that cherished macaroni necklace. In my mind it was the “right of passage” of parenthood.

Now, yes of course I realize that this necklace that I wanted so badly was just a representation of the many ways our life was and would continue to be so very different from the way I had imagined when he was born.
I know that very few people end up with the life they imagine, but I knew ours would be very different.

DC was in school, but at this point in time, they really hadn’t done many of the “school gift” projects that most children come home with around the holidays ~ probably because the projects would not  make it home in one piece ~ therefore my hopes for a macaroni necklace were dwindling.

One day, the Friday before Mother’s Day, when DC was 6 or 7, I opened his back pack and found a package labeled “Mom”. I called DC over and asked if this was for me. He signed “Yes”.

I opened it and there it was,  a macaroni necklace! Made with HEART SHAPED macaroni, no less. Also included was a photo of DC and his aide stringing the pasta.

This was absolutely THE best Mother’s Day gift! Of course, he didn’t really understand that he had to give it to me, I had to find it in his back pack, and of course the writing wasn’t his, but there was photographic evidence that he had made it himself!

I wore it all day on Mother’s Day and  to work on the Monday after Mother’s Day. He seemed to be very pleased that I was wearing it!

My office mates were happy too, believe me….. I specifically remember one saying “Thank God you finally got that macaroni necklace, I was about to make one myself!”

Now-a days DC is no longer oblivious to holidays. He knows when they are coming, he knows what they are about for the most part. His mind still doesn’t go to “Hey let’s make Mom a card or a gift for Mother’s Day”, but he now has some help for that.  But he does remember to give them to me, usually early because he is too excited and can not wait. He does make the connection with the holiday and the gift and he is very, very proud of himself when he gives me a gift. Such a difference from the boy who didn’t know it was a holiday or to know that he should give me the gift he made at school sitting in his back-pack to the “man” who just can’t wait to make me happy with his gift!

There is nothing that makes me happier than seeing him proud of what he’s done and accomplished.

So, Happy Mother’s Day!

May your jewelry box runneth over with pasta and your day be filled with joy!

Happy Mother's Day

 

 

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

Happy Anniversary

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…..

 

 

Progress with a Side of Pasta

Progress with a side of Pasta

Progress with a side of Pasta

Looking back over the past year, I can honestly say that it has been a very good and productive year.

DC completed his first full year of “work”.  He transitioned into it very well. Me? I am the one still having a problem calling it “work” and not “school”, the “car” is here, instead of the “bus”. I panic each time a school vacation comes along because I have to make plans for DC while I’m working, until I realize he doesn’t get those weeks off anymore; he’s working. The transition seems to be much more difficult for me than it was for him.

Volunteer

Volunteer “Dream Job”

My “Broadway Baby” also has a volunteer job as a Greeter at a local theater, with a job coach of course. He loves it and does well. The shifts are long, but he makes it through and he is happy when he gets home. How many of us can say we have our Dream Job? DC has his.

Because of his “theater experience” he was asked to help his camp by passing out programs at the annual “Thank You to Our Civic Groups” picnic. Unfortunately, the promise of cheeseburgers after he was finished totally distracted him while he was supposed to be working, so we will write  that one off as a “trial run” and I will know how to better explain the process to him next year.

Communication-wise, I’ve noticed that I am doing much less prompting to get him to respond to a greeting and many times he will initiate a greeting himself; although “Hello Old Lady isn’t exactly in my top ten, he DID initiate the conversation himself. He was also able to tell me a couple of  times, in his own way, but in a way that I was able to figure out, that he wasn’t feeling well.

He has been asking to do  more things “All by myself”, like making his lunch for school work, his breakfast, making his bed and shaving. “All by myself” means he doesn’t even want me in the room (a good thing with the shaving……. I make him nervous – me?- “Mom, are you still here?”).

This year we skipped our annual Halloween trip to either Salem or Sleepy Hollow and decided to go to New York ComicCon. To say it was  crowded is an understatement. He did well. Yes, he was anxious, but he controlled himself as best he could.  Mike TeeVee came at the perfect moment. DC was getting anxious so we were on our way off the show floor because I could see he was getting upset. We happened upon “Mr. TeeVee” on the way. No line,  as I don’t think anyone realized he was there yet. He was very nice and was able to spend some extra time with DC. DC calmed down right away.

He waited in line for an HOUR and A HALF to see the love of his life, Felicia Day. Do you remember when your kids were little? When they would finally eat or do something that they never would before and you were afraid to even look at them for fear they would stop? This is exactly how I felt standing in that line with him. I don’t think I was even breathing. Fortunately she came out early and we were relatively close to the front of the line, so I knew we were “home free” at that point. He was excited when she came out but then he turned to me and said “I am very nervous about this”. He has used the word “nervous” up to this point only when there was a storm, never about meeting anyone. I think he realized right then and there that the people he sees on TV or in the movies are real people AND that this person, that he adores, is someone special.

Penny's Frozen Yogurt

Penny’s Frozen Yogurt

We made it to the front, I could breathe again.  She was lovely to him. It made his day.

He was also able to meet William Shatner. He does know who that is due to his mother (me). He was very nice to him as well but “no pictures please”. We did forget to tell him that DC was born on his birthday; maybe that would have rated us a picture –but live and learn.

His Uncle asked him to sing Edelweiss at the table on Christmas Eve. DC is, and always has been, a ham so I was surprised that he sang the song, looking only at me and then buried his head in my arm when he was finished. Bashful! Embarrassed! I don’t know if this is a good thing or not,  BUT, it IS a new reaction and a new emotion so I will add this to the Plus Column as well.

There is so much more I can say about this year, but my point is, DC is 22, he continues to make progress. No, not in leaps and bounds as he did when he was younger, but it is there.

No matter what the age, there is always progress to be made. It may not even be noticeable right away, but it is there.

And, Oh……. On New Year’s Eve, Eve,  two days before the year ended, he actually ate pasta. PASTA!

Happy New Year!