Write? Why?

I have been badly neglecting this blog lately so I thought I would post a “refresher” for those who may be new here and to my Facebook page.

Why do I write?

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, copied and pasted that very long comment, on to a page and started my blog.

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 did 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.

“I tell stories, most of the time; single individual stories about this or that. Some may be written with humor and some may come across as “Oh, look at the cute thing DC did or said” (he does crack me up at times) but my object is always to make people understand how his mind works.”

It is difficult to explain “his” autism to anyone without resorting to 1000 examples and 1000 stories. So I tell 1000 stories to make clear that there are other sides to autism than the characters seen in TV or movies.

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 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, 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 and constantly being told how to feel by those who have not reached this point in their child’s life. 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 26 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 know that there are instances where we did have it wrong. When DC was young, there was not any where near the information and services that are available today. (See: Autism In the Old Days

I hope that 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. There has got to be some give and take. Everything does not work for every one.

Having said that, I have learned quite a bit from other parents by virtue of my 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, which will probably mean a group home, because he is going to out life all of the adults I have in place to take care of him when I am gone. We need better programs, more funding for those programs and we need to have trained people working with our children in those programs. The news reports of the abuse and neglect of adults and children with autism by the people who are paid and supposed to be supporting our kids will keep you awake all night, every night.

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…..


Short Stories

It has been another one of “those” weeks. A “fluff” piece usually goes hand-in-hand with one of “those” weeks (lately, anyway).

Below are some “short stories” (statuses) that have been posted on my own and my public Facebook pages – too short to qualify for a blog post, although many have turned out to be the inspiration for an official blog post. You may have seen a few of these before, probably not all though.

This is one of those posts that I put together and save to post later when we are away or when I am really busy and really don’t have the time to write .Like the “Blog Title Series” (Series? Yes, there’s more), they are very often off topic or “fluff”. I like fluff, sometimes fluff is fun.  (a few current status’ have been added to the “saved” version before publishing)”


Well, DC got on the bus this morning wearing a 4 inch witch nose – he’s in the spirit!


Today the bus driver will be entertained by a flashing Rudolf nose.


…… and who thought an electronic mega-phone complete with siren was a good idea for Christmas?


Banana phone

I was required to have a conversation on the “banana phone” with the Fairy Godmother before he would eat the banana –



merry happy


“Merry Happy Christmas Eve, Mom”





Lesson of the week: Using the phrase “let’s head out” when taking DC to the bookstore, means that “let’s head out” ALWAYS means he’s going to the bookstore #ThingsIShouldKnowByNow


Well he’s heard the “T & L “ words on the weather . It is official. There will be NO outdoor activities for us today


Camera roll 10-2013 082“Mom, the glasses are bothering you”. (Translation: I bought new cheaters, they are different, he can’t stand it. They are bothering HIM.) But…. he’s not trying to take them off my face as he used to. #Progress



DC is shaving – getting ready for the Prom, scaring the life out of me w/ the razor. Finally he turns to me & says “Mom, are you still here?” #IGuessThatsMyCue



Doug after sitting through 23 coffee-house acts at DC’s Arc activity. I guess we’ll be skipping this activity the next time around.





“Mom, how are you feeling?”
(Me) “I am fine, how are you feeling?”
“I am perfectly ‘nis-able’ ” ~ Even Stevens – Influenza the Musical


DC just informed me that he needs to get his “beauty rest”


Going to have lunch today with DC at his “job”. He’s excited because he knows he will be able to have a cheeseburger……. Should I be upset that I don’t rate as highly as a cheeseburger?


Camera roll 10-2013 117So after I wiped out on my walk with DC today, I asked him “what would you do if mom couldn’t get up?” He answered w/out hesitation “call 911” (after he stopped laughing, of course) #Progress





ren faire

We went to the Ren Faire to see my brother’s show. DC loved it but yelled out in mid-performance “Oh no! *Bill, are you okay?” He was very concerned about the welfare of *Bill and *Uncle ‘Scamp’ and the bed of nails. Although not as concerned about the man actually laying ON the bed of nails…..



DC picked up the word “sympathy” from one of his books last night & figured out it means “sorry”. So now he’s “in sympathy” for sneaking chips yesterday


DC: “Annette ‘Fun – Tree – O’ in Babes In Toyland, my favorite movie” (Me: Worst Movie Ever …. Seriously ….)


We had our  IP (The “E” is dropped post-school age) meeting this morning at DC’s program. The first with his new case worker. One of the first sentences out of my normally agreeable son was “I don’t like this stupid meeting!”
1. I’m the Mother so I can not laugh (but I think I may have anyway)
2. I couldn’t agree with him more……


It’s a New Years Eve, Eve miracle! DC is eating PASTA!
PASTA! And about 10 meatballs, but…..PASTA!



Just because I LOVE this and……. our kids ROCK!









I couldn’t have said it better! #DC-isms




I was on the phone with an automated system that was not cooperating. DC was making a lot of noise behind me. I told him that he had to be quieter while I was on the phone. I suppose he did not trust himself to keep the noise down because when I turned around, he had applied a Band-Aid over his mouth! Band-Aid 101 – other uses.



Band-aide 101 – other uses”  When I told him that his sound machine was too loud; this was the fix he came up with.

Happy Sunday!





 But then, of course there are the “regular” uses #HeJustLikesBandAids




DC: “Mom, my leg is killing me.” (there was nothing wrong with his leg, I checked)

Me: “What happened to your leg?”

DC:”I broke my leg.”

Me: “How did you break your leg?”

DC: “Tree branch. Ouch!” (we are in the house)…

The lengths that he will go, to plaster himself in band-aids.


DC doing his best impersonation of Nick from Top Chef 11 – ‘Don’t Touch my pots!”


DC's hat

DC insisted on putting his Dr. Who WINTER hat into his backpack this morning. I asked him why, he wouldn’t or couldn’t tell me. I pointed out that he has a baseball cap in his backpack for the sun. It didn’t matter. So here’s hoping he won’t be walking around the greenhouse on this beautiful, sunny spring day in a T-shirt and a winter hat. #PickYourBattles #WhoviansUnite



excuse me

DC and his Winter Guard Team went to perform at an Ice Cream Social Fundraiser tonight. In the warm-up room before the show, he and his team were lined up getting their last-minute directions from their Director. DC waving/raising his hand during her speech….. “Excuse me! I’m waiting for Ice Cream”.




sick of butter


DC presented me with his shopping list for tomorrow. “bandes” – band-aids – and no, he is not sick of butter – he wants butter but in stick form (he doesn’t like the tubs😃)







DC woke up in a fabulous mood this morning. “Good Morning Starshine. The earth says hello “ (lol, Charlie and the Chocolate Factory or Hair – take your pick) #DisneylandParis


DC and Doug decided to go on “Indiana Jones Temple of Peril” in the rain…. Go figure #DisneylandParis meets #MrNoStormToday . Apparently rain is not as frightening at Disneyland



  A cape…. Because proper attire is a necessity while watching you-tube (and you never know when you may  have to save the world)





Me: Hi, DC. Is Mrs. H there yet? (I knew she wasn’t, but would be there in seconds – but still I like to try to get the correct replies)

DC: No.

Me: Did you lock the door?

DC: Yes

Me: Did you lock the door?

DC: No.

Me: Please go and lock the door. You are supposed to lock the door as soon as you come home.

DC: Okay

Me: Don’t hang up! (He does not understand that he can just put the phone down, lock the door and come back)

He hangs up…

and second later the phone rings

DC: Hi Mom, I am home again!


five teen six


Book Editing 101 –

Page “Five teen six”




“Someone” may have just realized that he might be in a little bit of trouble tonight….







steve DC was having an “issue” tonight at the time his Best Buddy, Steve called to say hello.

 Steve understands, but I did tell DC that he was very rude to Steve.

 DC went straight into “note-writing” mode and presented me with this note. We did   text  it right over to Steve.





It’s pouring.. POURING! DC was ready at the door wearing his raincoat (Me? No. I wasn’t going outside yet). When the car arrived, he ran out and I stood in the door as always. I saw him flagging we to the car, which he never does. Thinking something was wrong and not wanting to waste time looking for my umbrella, I ran to the car as I was. Opening the door, DC said “Mom! It’s raining! Sorry!” (of course he let me stand there in the pouring rain for a little while before he came out with that) … Happy Tuesday!


*Some names have been changed to protect the innocent

Have a great weekend…..

All Day Music (or Blog Titles – Part Two)

all day

Yesterday a friend of mine pointed out that I haven’t had a very easy “run of things” over the past month or so. This is true. Most of it has not been anything really major (aside from DC’s seizure, of course), but everything all at once on top of each other has really thrown the proverbial wrench in the works around here.  I don’t normally like to publish back-to-back “fluff” pieces or back-to-back reruns, but right now “that’s all ‘she’ wrote”. So please bear with me through one more “fluff” piece, read some of the old posts with “musical titles” listed below and remember that I really did give you prior warning about the “Blog Title Series” 🙂

This is one of those posts that I put together and save to post later when we are away or when I am really busy and really don’t have the time to write. Like the “Blog Title Series” (Series? Yes, there’s more), they are very often off topic or “fluff”. I like fluff, sometimes fluff is fun.

From an earlier post and what I suppose would be called the first installment:

I always have music in my head – always. And also much like DC, I can pull out an obscure or very old song or just a line from a song and actually think people will recognize it.

You may (or may not) have noticed that I use quite a few song titles, lyrics or variations thereof as blog titles. I do this because music is always the first thing that pops into my head when giving a title to a blog. Once it is in my head, it’s there and even if the actual song has nothing to do with the post itself, I have to use it

We sure do have some stories, don’t we?

(The original title was “We may be crawling in the dark, but we sure do have some stories”I thought is made the post sound too serious. I decided to include it anyway because……it’s my post and I just happen to like this song – no other reason)

we are all crawling in the dark at times – we certainly were back then and really still are to some extent – but there is always humor to be found


Don’t ya know that I love my music


If you knew…. Peggy Sue..


Knock Three Times


Because, Because, Because, Because….BEEEE CAUSE  


Hello Dolly!


“Please allow me to introduce…..”


Knock, Knock, Knock on Wood


Pants on Fire


“We Go Together……..


Again, as DC would say “We hope you enjoyed the Music in Mom’s Head”

What to share? That is the question…..

The answer….. for me, not everything.

A few days ago I came across this post from Diary of a Mom – online privacy – part a million. Coincidentally  I had just had not one but two similar conversations just last week.

Yes, I do write about my son DC. Whether he understands it or not, I do tell him that I write stories about him. I do tell him what I am writing about. I try very hard not to write about anything that might embarrass him even if I believe he will not or does not understand it. There are so many topics I will not write about.

Good Grief ! I was so on the fence about writing a story about toilet paper that it took me two days to hit “publish” and when I did finally publish, I had to disguise it as paper towels:

In a post a few months back, I wrote that I do not buy paper towels and I do not, but just for the sake of this post, let’s just say that I do…….

(you can see, I am over that now)

I find it much easier to explain autism, HIS autism by telling specific stories about how his mind works, the things he does or says, the many things he is obsessed with, his likes, his dislikes and some of the issues we face. At times I will use humor to tell a story because at times he is funny, the situations are funny! He knows he’s funny. I tell him he is funny. I may be laughing at the situation –  I am never laughing at him.

I have some very good friends, many of whom also have children with special needs. I am thankful for them. We are all somewhat in the same boat and even though autism is not the common diagnosis, we all seem to have many of the same issues. They are the people I can share the “Holy S#!T, how is this my life?” moments with, because at times we all just need to tell someone. They share with me as well. You really don’t want to be in the room when we are all together, trust me. We are able to discuss issues that I can only assume most NT parents do not and would not discuss with their friends (DC is my only child so, that is only an assumption on my part). Those conversations remain between us. They are not written about – ever.

Recently a few people suggested that stories about certain behaviors, “growing pains” and other such topics should become a part of this blog. They will not be…

I understand that people might look at this type of information as knowledge or what they may have to look forward to – I do, but there are plenty of other resources and blogs out there that will and do share this sort of information, some cringe-worthy (to me, maybe not to anyone else) and some handling the subject quite delicately but I don’t feel the need to do that here. I am not saying they are wrong. I am certainly not judging anyone – people have different views on the subject of sharing, this is just mine. It is not for me.

We have our good days, we have our bad days and I almost always learn something from the bad days. I may sometimes write about or mention the bad but not in specific detail.  I will just about always write about what we’ve learned or have been able to figure out from both the good and the bad. I hope I have not written anything that would embarrass him, I don’t think I have. Everyone’s perspective being different; maybe to some, I have. I do hope that in my almost two years of blogging you might by now have a small snapshot about DC, HIS autism, his triumphs, the progress he still continues to make, the way his mind works and most importantly that he is a happy guy who loves his life.

I’ll leave the rest to others…….

 (This post was written a while back and as I mentioned in an earlier post, I try not to post more than once or twice a week, so it  was bumped in lieu of a few others and was in jeopardy of being bumped again. Once again, here is another post from Autism-Mom along the same lines that has been published since; PROTECTING HIM ONLINE – be sure to give it a read.

Liebster Awards and the blogs that I love!


Last night I was notified that I had been nominated for a “Liebster Award” by Autism Mom. First and foremost I’d like to thank Autism Mom for including my blog in her list of nominations. I enjoy reading her blog everyday and I am honored that she takes the time to read and comment on mine.

I had never heard of this award before, so after a little bit of searching, I did come across the award and the rules – but many different variations of the rules. Becoming rather confused, I decided to link to Autism Mom’s explanation of this award (here) and follow the rules that she used in her piece. – Yes… I took the easy route…

It is wonderful of course to receive recognition from other bloggers – especially since until a year and a half ago, blogging was the farthest thing from my mind – and from what I have read, this process will and does help to share your blog and the blogs that you love with the rest of the blogging community.

Having received a nomination, it is now my turn to come up with a list of my own nominations.

This is the easy part.

Autism-Mom – (If it is allowed. Autism-Mom would have been on the top of my list even if she had not nominated me. I will assume she will not be required to go through this whole process again.) “Sharing Autism ideas, news, strategies and tools, and lessons learned from one mom with one child and one experience on the Autism spectrum.”

Mother O’ Jim“Mother o’ Jim, a blog about and with her son James, a wonderful young adult on the autism spectrum, who is searching for the path and tools to be independent.”

Wendy Jane’s Soul Shake“One white woman’s curious obsession with race. Follow my quest to connect across color lines.”

One Loco Mommy“Balancing Life, Love and Autism in the Great Suburban Outback”

Baby Boomer Bubbie –  “Baby Boomer Woman, Creative, Mother, Bubbie, ex-wife, curious, future, past, concerns, fears, hopes”

Sassy Aspie Mom “A little blog about my life as a wife and mom raising two boys (one who has Asperger’s Syndrome).”


Next step is to answer the questions listed by the blogger that nominated you (each nominator should some up with a set of questions for their nominees to answer as an introduction to other bloggers and readers).

Autism Mom asked and I answered:

      1. How is blogging different than how you thought it would be when you started?

I can’t really say that I had any expectations when I started at all. I suppose the support from other bloggers was surprising.

  1. What is your favorite blog post that you have written?

Mother’s Day update

But one would have to read “Mother’s Day and the Macaroni Necklace” to understand the update.

  1. What is the most surprising thing that you have blogged about, that you never thought you would blog about?

Ha Ha! That would be toilet paper under the code name of “paper towels”.

  1. Where is the strangest place you have blogged (e.g., typed on your computer, wrote down blogging notes, etc.)?

I suppose it would have to be in the car – passenger side – I do not blog and drive.

  1. Which blogger would you most like to meet?

That’s a tough one. I really would like to meet them all.

I do know Wendy from Wendy Jane’s Soul Shake, but I haven’t seen her in (mumble, mumble) years. I really would love to meet the rest. Although, coffee/Dr.Who Experience in London with Autism Mom would have been right up there on THE top of my list if it had turned out that we would both be in London at the same time (We won’t be. It was close, but no cigar)


The final step is to list a few questions of your own for the blogs you have nominated:

So, Autism-Mom, Wendy Jane, Mother O’ Jim, Loco, Baby Boomer and Sassy these are for you:

1. What first inspired you to blog?

2. Has your blog changed direction in any way since you began?

 3. What is your favorite post (borrowing this question just because I like it)

4. What is your favorite movie?

5. What is your favorite television show?

Thank you again, Autism Mom for the nod and of course, thank you for reading.

I am heading directly to her list to check out the blogs I haven’t read before.

Hope you all will check out the blogs I have nominated! They are all totally worth your time!