Saturday, January 03, 2009

A Long Boring Autism Related Rant

I am going to preface this rant by saying it takes a lot to make me mad. I do not get offended easily. But a "friend" IRL offended me very much in December and I can't quit chewing on it. I am hoping if I get it out I can get on to thinking of more productive things.

All of you are probably aware my son has autism. While it is part of my life, it is not an all consuming part of my life. I have one kid with brown eyes, two kids with blue eyes and one of my blue-eyed children happens to have autism.

I never suspected autism at first. After all, I had seen the movie Rain Man. That was autism, right?

So we started out treating for speech delays and my son was also in occupational therapy but I wasn't sure why he needed to be there.

Then his speech therapist said he should be evaluated and I started to get a bit nervous. Then we got a diagnosis of PDD-NOS and I was relieved until I did research and realized that PDD-NOS is autism light. Later, and with further testing, we did get the autism diagnosis.

When I realized it was autism, I was devastated. What was I supposed to do now? Well the first thing I did was get on a very long waiting list for services. Yes, the services are thankfully free but you're in line behind five-hundred other parents.

I did internet research. I changed my son's diet with great results. We took some music classes that were followed by a speech explosion. After a year-long wait, we received ABA therapy. He went to a great pre-school courtesy of the school district when he turned three.

I went from sadness to anger and confusion to "what the hell do I do now" to acceptance.

I have come to the realization that my son is not broken. The therapies are not to "fix" him. The therapies are to help him cope in a world that can be very unforgiving.

There are many things for parents of children on the spectrum to try. There are different diets, therapies, vitamins and supplements. There are so many tests and scans that can be run.

But one thing I feel all the parents of autistic children have in common is we have been given a million-piece jigsaw puzzle. It has no edge pieces and we don't know what the finished picture is going to look like. So we do our best trying different things to solve that puzzle. And we are all in this together.

And really everyone's children have to learn to cope in the world. We do our best to teach them right from wrong, good manners and how to relate to others. My son just happens to need a bit of extra help.

He is funny and smart and wonderful and the only thing I would change is to make life easier for him.

I have a "friend" I met about a year ago. Her daughter had not been diagnosed yet. Her daughter had been hitting all her milestones and then she just regressed. My friend was getting the run around from the people doing the testing and it was obvious something was wrong with her daughter.

I faithfully listened to this friend vent about these things. I made suggestions and was a sounding board. I congratulated her when she got her diagnosis, got services and started bio-medical treatments.

I have seen her daughter change for the better after she did chelation. I have been supportive. No matter what service she got, she would pick it apart and wonder if it was the correct service for her. And still I listened and suggested she pick what she felt was the best choice.

I kept waiting for her to open her eyes to what she did have and to quit being mad at her perceptions of what she didn't have.

This went on until we were talking on the phone just before Christmas and she said in a nasty tone of voice, "Your son isn't even autistic. You should have just sent him to school and explained away his quirks as ADHD."

And then she got off the phone. I was left feeling like I had been hit by a truck. And I thought and thought and thought about this comment. I tried very hard not to be pissed off. But it didn't work.

My son is doing wonderfully and I am grateful for that.

But she wasn't here when I had a baby who constantly screamed in the car. Groceries had to be purchased and kids had to be picked up to school. And there was a baby screaming in the back the whole way.

She wasn't here when he would wake up from his nap and have forty-five minute tantrums that we couldn't console.

She wasn't here when he tried to run in the road while we were picking up my youngest daughter from school.

She wasn't here when I quit going to playgroups because of my son's bizarre behavior.

She's never been here when I put him in time out and he kicks his bedroom door so hard it is splintered.

I was verbally betrayed by somebody in my own community. I couldn't stop being mad and I finally sent her an e-mail today. She can apologize or not. I don't care.

We are all on this ride called parenthood together but I feel for now, she can get the hell off my bus. I hope she doesn't let the door hit her in the ass.


Blogger Sarah Louise said...


I love this bit: "I have come to the realization that my son is not broken. The therapies are not to "fix" him. The therapies are to help him cope in a world that can be very unforgiving."

Coming to terms with my "disorder" sucks mightily and it's true. I will probably never be "ordered" (if that's the opp.) of "disordered" I applaud you for facing facts and being grateful for the life you and your son do enjoy.

Sending you virtual hugs,


7:25 PM  
Blogger craftydabbler said...

I'm sorry, what a crappy thing to have happen.

9:13 PM  
Blogger Chris H said...

What a bitch, and she called herself your friend? You can do without those sorts of friends mate. You should never have to justify your kid to anyone, or 'prove' he's got friggin autism! That is just awful and I hope the door DOES HIT HER IN THE ARSE!

10:37 PM  
Blogger badgerdaddy said...

Sounds like you did the right thing - try and sort it through yourself, make sure you were royally pissed off for the right reasons... Then let rip.

Fuck 'em. Nice work.

3:17 AM  
Blogger Caro said...

SL - Aw thanks. You know I don't think there is any one definition of normal anyway. My normal is certainly not anybody elses. And that's okay.

Craftydabbler - Maybe it was a good thing though. Goodbye emotional vampire. Conversations with her always left me tired.

Chris H - Maybe the door could hit her in the ass and knock her down while it's at it.

Badgerdaddy - It's one angry e-mail I don't mind sending. She had made some crap comments before and I tried to be understanding but that was the cherry on the Sundae.

9:23 AM  
Blogger Badger said...

Holy crap, dude. It never ceases to amaze me when stuff like this happens, even though it's happened to me several times. I have a "friend" whose son is the same age as my boy and has ODD and ADD and a lot of behavior problems. She has had the gall to tell me on more than one occasion that I am lucky because my son is "just autistic". Not that I would trade places with her, but she has NO IDEA what we've been through with this kid. He is very high-functioning but he is STILL AUTISTIC, YO. And he always will be, and we will always have autism in our lives.

I love where you said the only thing you'd change is to make life easier for your son, BTW. That is EXACTLY how I feel! I don't want to change who he is, but I do wish he was able to navigate through life with the ease that so many other kids do. I guess we will just keep sticking those puzzle pieces together!

10:50 AM  
Blogger Caro said...

Badger - Your friend and mine bring to mind one of my favorite sayings. With friends like that, who needs enemas? Mwahahaha.

3:24 PM  
Blogger Ms.L said...

I'm with Sarah Louise,I love that bit too. It's so true. Our kids don't need fixin'.
I also love this part "He is funny and smart and wonderful and the only thing I would change is to make life easier for him."

It always feels worse when crap like that comes from someone who's
supposed to be on your team.

I think you're awesome for confronting her like that.
That takes courage(I have so
many things to say to people
but never quite get the words
I hope sending her the email made you feel a bit better!

4:19 PM  
Blogger Caro said...

Ms. L - Thanks. I do feel better. She hasn't answered it but I feel like I've lost a forty pound stone around my neck.

4:55 PM  
Blogger BabelBabe said...

what everyone else said, esp. BadgerDaddy.

I think you are an awesome mom (the diet thing alone would have cowed me : )), and he is lucky to have you, to try and help make his life simpler. isnt that what we all do for our kids? and we don't need other parents making it more difficult. screw her.

10:36 AM  
Blogger Caro said...

Babelbabe - Thank you. Badgerdaddy does have a way with words doesn't he? :-D

The diet isn't bad at all once you get the hang of it, just expensive. But then all groceries are expensive now.

12:02 PM  
Blogger OldHorsetailSnake said...

That's too bad Carolyn. Maybe it's a long shot, but posssibly she will figure it out and come forth with the apology. Possibly.

4:20 PM  
Blogger Liz said...

You get Mom of the Year as far as I'm concerned.

Maybe she'll learn her lesson and not ruin more friendships in the future. Give the gift that keeps on giving- a reality check!

5:59 AM  
Blogger MsCellania said...

Oh gees; I have been in those back-handed compliment shoes. You don't have time for a 'friend' like this, Caro. Glad you set her straight and now walk away. Even if she responds - leave it be. She is not worth your time.
Beautifully said about not trying to fix your son! AMEN!

11:39 PM  
Blogger Smart Ash said...

Friends like that are no friends at all, but rather those you'd like to accidently run over if you see them while driving... or maybe that's just me...

I'm sorry for her, on behalf of the rest of humanity, we apologize and will try to send her back to planet rude-n-un-called-for ASAP.

Also... since my blog is... well, pretty much dead, here's my new one in which I share with 5 other strangers... careful, it may be addicting!

10:58 AM  
Blogger Caro said...

OldHoss - She actually did apologize. I'm still surprised.

Liz - I love your gift that keeps on giving comment. LOL

Mscellania - Yep, gotta love those backhanded compliments. I know a few people who do them well.

Smart Ash - Thanks for the link. Planet Rude and Uncalled For is pretty funny.

9:04 AM  
Blogger Mary Poppins said...

I could not agree more, no one knows what is exactly going on until they walk in there shoes. I would give anything I have in this world to not have my daughter in the situation that she is in, but I can't dismiss the fact that there is indeed something not "right" with her that needs my attention and I can't deny all the things we have been through and pretend they didn't happen at all, just because she has progressed.

I hear ya!

6:48 AM  

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