Opinions and Closed Cases

Posted by TakingItAStepAtATime

A few months ago, in anticipation of a social gathering that we were scheduled to attend still weeks away in the future, I published a “rant” – plain and simple – it was a rant. I already had myself worked up.

Now I do write my fair share of rants but I would say that 50% or more do not ever get published (okay so I published “sort of” a rant just last week, but usually they do not see the light of day). Although I have every intention of hitting the publish button at the time, just the writing down of it tends to calm me down and said rant goes unpublished. There are times when the writing down of it does not calm me down and in most of those cases I sit on it, sometimes for months until I am able to edit and bring down the hostility level a bit.

Then there are the times when I do not sit on it (while still trying to edit out some of the hostility) and just hit publish.

After I published the post below, managing to bring that level down, my blogger friend Autism-Mom published a post that said everything in a graceful and more civilized way. If you missed it, you can find her post right below my rant. It is worth the read.

So………..The holidays are upon us. Need I say more?

Opinions, Opinions and More Opinions

As parents of autistic children, we as a community seem to receive a good amount of unsolicited and unwanted parenting advice and opinions from family, friends and even strangers. Why these people seem to be under the impression that this is appropriate behavior or conversation, I do not know. If someone should ask my opinion about their neurotypical child I may give them my opinion – I may not, (especially since I do not have a neurotypical child to base my opinion on) but either way, I will most certainly not tell them that they are “doing it all wrong” or give an opinion in front of their child. As a general rule, if not asked I will keep my mouth shut. I do not understand why it always seems to be open season on us, our parenting skills and our children….

Dear Everyone At The Table:

Let’s just get this all over with now so I don’t have to listen to it in increments throughout the evening, shall we?

1. “Can’t he do that himself?”

Yes, he is perfectly capable of getting up and getting his own food, but I am closer and offered to do it for him. What about this could possibly concern you?

2. “Does he use that much salt at home?”

No, as a matter of fact he doesn’t use ANY salt at home. (See post) – I do not even buy salt as I don’t use it either. He and I together probably consume less salt than any single average person would. Someone along the way must have shown him that salt is used for something other than fairy dust so he does feel the need to use it when we go out to eat.

3. “Does he eat that much at home?”

No he doesn’t. Not even close. He would if I let him, but I don’t. Yes, he gets a little bit carried away when we are out, but one of his favorite things in life is going out to eat so what would be the fun in it if he doesn’t get to have what he likes?

4. “You should make him order a salad with his meal. Does he eat any vegetables?”

He eats a good amount of vegetables, probably more than you do. In his mind, salad and vegetables are not “out to eat” foods. (See answer #3) I don’t believe that I will have to rush him to the hospital for not having vegetables at this one meal. He eats a good amount of fruit too, but I am sure you will now point out how much sugar there is in fruit so I guess I may as well be giving him candy.

5. “Does he exercise? He looks like he could use some exercise”

He walks and goes to the Y at least 3 to 4 times a week. Not to mention the jumping and dancing he does quite continuously when he is at home. He also runs cross country in the fall and takes Zumba every time the class is offered.

6. “He’s put on a lot of weight. You really need to watch what he eats.”

He is on seizure medication – this is one side effect of said medication. I watch what he eats every day (see answer #3).

He exercises daily (see answer #5)

So with all of that being said; Would it be possible to reserve this and any further conversation about his weight or eating habits for a time when he is, you know, not sitting right here. My preference would be at a time when I am not here either.

If you should have any other comments or unsolicited opinions on any subject regarding my child, please reserve them for that same time.

While I am not or have ever been in the habit of commenting on everyone at this table’s parenting skills, I do have a list in my head going way back over the years that I can access at a moments notice. I am not afraid to use it…

(It’s a pretty extensive list)

Best Regards,

Vickie

CASE CLOSED – Autism-Mom

Open: When I was ready to have a child, I read many books on pregnancy, learning the best ways to do take care of myself for the health of my child.

Closed. The reality of working full-time, pre-eclampsia edema and hypertension meant I had to adapt to meet my own needs as well as my child’s, even if it was different from what the books recommended I do.

Open: After I delivered, the nurses in the maternity ward, books, the internet, my friends and family, told me what I needed to do to take care of my baby.

Closed. I cared for my newborn the way that worked best for us after learning who he was, what he needed, and even if it was different from what the nurses books, the internet, my friends and family suggested I do.

Open: As he grew older, I listened to his teachers, therapists, specialists, counselors, learning the best ways to support him in his growth and learning, including related to his Autism diagnosis.

Closed: I took all of the information I had, applied it to what I knew about my son, and moved forward, even if it was different from what the professionals recommended I do.

Why? Because I am the parent and the decision is mine.

Please read the remainder of this post at Autism-Mom

Thank you for the support, Elizabeth!

****

Happy Thanksgiving to you all!

Not the ‘Real’ Autism?

Posted by TakingItAStepAtATime

DC was agitated all last night. He gets agitated often but these days it does not seem to last as long as it did when he was younger. It usually comes and goes in bursts and then it is over – sometimes not, but for the most part now-a-days, it does not last too long unless something is really bothering him.

DC and my conversation last night:

DC: Mom, come here.

Me: What is wrong?

DC: Nothing wrong. I feel all right.

Me: You don’t feel well?

DC: (Getting angry) I feel all right! Behind me!

Me: What’s behind you?

DC: (Still angry) NOTHING BEHIND ME! I feel all right.

When he came back downstairs, still with that look in his eyes I asked;

Are you sure you are all right?

DC: Behind me!

Me: Does your back hurt? (I checked his back – there was nothing)

DC: NO!

Me: Is your back itchy?

DC: NO! I fine!

Me: DC are you sure you are feeling okay?

DC: YES!

Worried that he didn’t feel well I told him to rest on the couch with his ipad.

One of the many things that I worry about is DC having something medically wrong with him and I will not be able to tell.

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

When he got settled, I tried again.

Me: DC, you know that it is very important that you tell me if anything ever hurts. If your head hurts, if your stomach hurts, if your tooth hurts or anything else hurts, you always have to tell me. Promise?

DC: Yes, I promise.

Me: Tell me what you are promising to do.

DC: I promise never to hurt.

Me: DC, every one has hurts some times. If something is hurting, you have to promise to tell Mom.

DC: I promise.

Me: Tell me again what you are promising.

Blank Stare…

Me: What are you going to do if your stomach hurts?

DC: Go to the bathroom.

Me: Okay…. but what else?

Nothing…

Me: You are going to tell Mom. What should you do if your head hurts?

DC: Rest.

Me: Good, and what else?

Nothing, again and I had to prompt him to say “Tell Mom”.

I keep seeing posts on line talking about the ‘Real Autism’. How my child being happy is somehow doing a disservice to the autism community. I will never apologize for my child being happy. He is, for the most part a happy guy. He’s funny and certainly a charmer and he knows how to use those charms to his advantage. When he does something like tape the sides of his mouth with scotch tape to keep a smile on his face, it is funny but it is also impressive to me that he came up with it.

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 the situations are funny.

The fact remains that he, an adult, can not even communicate to me when/if there is something wrong or something bothering him.

No, he may not be a 25 year old in a diaper but..

my son will never be able to live on his own. He will never be able to take care of himself. He will not know when/if he’s being taken advantage of. He does not understand danger or safety. He is verbal but really not able to communicate if something might be wrong.

What about this is this not ‘Real Autism’? Everyone is different, DC’s autism is certainly different than your child’s without a doubt. Different does not mean ‘Not Real’.

Even with all that DC has accomplished over the years, 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 and will long out live all of us. He will at some point 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.

Even though I try to write in a more upbeat fashion, I think I have made this point perfectly clear over the years.

What about this is not ‘Real Autism’?

We are all fighting on different fronts in the same battle – the battle for our kids to lead productive, safe and happy lives. But I can not write about your child’s autism, I can only write about my child’s autism.

If you are adamant about spreading awareness about the other sides/levels of autism then DO THAT! We need to show the public every single side that we can. Start a blog, write and submit articles to online publications – there are enough of them out there, ask to write a guest post…. do something other than admonishing people for their views and stories.

DO SOMETHING!

I choose to tell our story they way I choose to tell it. It is OUR story.

You have to be the one to tell your story.

There is room for everyone.

The Babe With the Power…. a Halloween Wrap-Up

Posted by TakingItAStepAtATime

Back in September:

W hen DC and I picked out his costumes two weeks ago for this, my favorite holiday, I was a little bit disappointed.

Until… after the chosen costumes arrived of course, we came upon something so much better. I was not thrilled about the Santa and Elf he had chosen for us to wear on Halloween night (I know… not… about… me) so I was glad and he was excited to happen upon a fabulous replacement.

No worries. I knew that Santa and the Elf would not go to waste. There always seems to be an extra event or party that comes up that I did not plan for and fortunately this year there were two extra events that came up.

Once again, we had to man a fundraising table to support DC’s summer camp and like last year this table was located at a local miniature golf course that decorates for the month of October. Plain old miniature golf becomes Haunted Golf for the month. Like me, DC has no interest in playing miniature golf, but if he is going to sit at the table surrounded by Halloween, he is surely going to wear a costume.

He was planning on wearing that “extra” Santa costume, but as it happened it had rained all day and it became so hot and humid that evening the Santa costume would have been really uncomfortable. I talked him into wearing the Elf instead. I told him that I had heard that there would be a costume dance hosted by his day/work program in a few weeks and if he wanted to attend, he could wear the Santa suit then. He agreed.

The Elf it was at Haunted Golf:

He was not shy about ‘working’ those bells…

One “extra” costume down and moving on.

Two days later, DC attended his summer Camp Halloween party. He loves to see his camp friends during the off months. For this party, he chose a Wizard. Not just any Wizard, mind you… in his mind this was Merlin from the Sword and the Stone, a very old Disney movie. Now, you knew there HAD to be at least one choice somehow related to Disney. There is no getting around that.

Later, he did mention that he was not only the Wizard from The Sword and the Stone but also Snow White’s father. I have no recollection as to just what Snow White’s father looks like, so I will have to take his word on that one.

His work dance was coming up and I asked him more than once if he was sure he wanted to go. He said he did. DC is always up for a dance. He loves to dance, but the dances given by his day/work program are usually not anywhere on his list of things he wants to do. The very first time DC used the word ‘boring’ was to describe one of these dances and the only time he has used that word since is anytime that I ask him if he wants to go to the monthly dance. If you are wondering if he is using this new word correctly…. yes, he is. They are boring – very much so. But, it is almost always an entirely different story when costumes are involved, so he agreed to go.

Well, he lasted 45 minutes. The eating of pizza took only 5 minutes so the other 40 minutes were spent wandering over to me and telling me “Mom! I’m boring!” I thought if he would just get dancing he would have some fun, but every single time he DID start dancing, the DJ cut the song off and then there was nothing but silence for a good long time. The DJ started playing Ghost Busters (one of the few danceable songs he played) at least three times and stopped it right in the middle every single time. I really don’t know if he ever made it through that song.

He wanted to wear the Santa suit and he did – albeit for a total of an hour and a half (including drive time) but that seemed just fine with him. He got to wear it and that was all that mattered.

Second ‘extra’ costume, used ….Mission accomplished.

One of his favorite parties every season is the Best Buddies Halloween party. Other than the grand finale on Halloween night, he seems to look forward to the Best Buddies party the most. For this he chose the Mad Hatter. He has been both the Disney and the Johnny ‘Deep’ (DC-speak) versions of the Mad Hatter in years past and to be quite honest with you, I do not know where this particular version of the Mad Hatter comes from. He owns so many obscure versions of Alice in Wonderland – it could be from one of those or it could be from the new movie, Through the Looking Glass. I have no idea, but the “Dark Mad Hatter”, which was the only description I could find was his pick. As long as he seems to know what movie or book it comes from, I don’t have to.

Finally we have reached the end of the road, um… the end of the Labyrinth – Halloween! Once the costume was on he spent a good amount of his evening looking at himself in every reflective surface he came across! I think this one will go down in history as one of his favorites.

Introducing……

Jareth the Goblin King!

Of course we had to have a Baby Toby (that would be me)!

Did anyone know who we were supposed to be? Maybe not. Most of the time that seems to be the case anyway, but we do not care about that. We know who we are supposed to be and we have a great time making everyone wonder (I do anyway). Last year there was only one person on the Trick-or-Treat route that knew he was Doctor Who and I was the TARDIS (yes really!). So I don’t think it’s us. I think it’s the neighborhood. We must have taken a wrong turn somewhere along the way through the Labyrinth.

Hope you all had a Happy Halloween!