Thursday, January 8, 2009

Responding to the Tough Questions

There are a few questions that no matter what will always be asked. As the parent to two kids on opposite ends of the autism spectrum they are inevitable, but still surprising.

My sons are now 12 and almost 14. When my youngest son was nine years old I attended training sessions through a clinic for Floortime. In order to get funding through the Regional Center families had to go through the training classes, which were held on a weekly basis during day and evening hours. The Regional Center is for those in the State of California.

I was able to answer all the questions that were posed to the class each week and gave examples of our experiences. Most of the other parents were there for their very young children. There were some professionals taking the class as well.

At the end of a class another Mom asked me one of these dreaded questions. She wanted to know why I was just starting Floortime for my 9 year-old-son. It really was none of her business, plus the answer is not an easy one to respond. Being in the same class for all those weeks she should have known that I am a single parent with two kids on the spectrum doing it all alone, no family in the same State.

I did not want to go into the explanation that a few years earlier we had a Floortime assessment in the home from another agency. I did not appreciate the way they portrayed me in their report or the way they handled being in my home. I am not about to have an agency bring their employees into my home who disrespect me or my children and will not be utilizing the pecs cards for my nonverbal child or appear irritated because my son needs a diaper change.

I am not about having people in and out of the house disrupting our lives and routines, no matter what the end result may be from the therapy. Pros and Cons of Assessments offers insights into our experiences. You might want to consider some House Rules for in home personnel. Here are our Rules for a Respite Worker.

A few summers ago I thought we were getting some behavior therapy, but it turned out to be parent training. The girl who came for the assessment looked like she signed on for a modeling assignment. The actual so called therapist was a singer in a punk rock band. The three months did not go fast enough. The clothes and attitude they brought into my home that summer was unreal. The supervisor girl who did the assessment wanted to do pecs with my son and DTT. She was to be supervising the punk rocker. The punk rocker's mission was to be the one to get my nonverbal son to talk. Just in case I forgot to mention - we live in Los Angeles.

Over the years I meet up with someone via email or in person that wants to be the one to turn my son into a verbal kid. They seem to forget that I am the parent here. I did not ask anyone to try to get my son to speak, especially those clearly not qualified to do whatever they think they can.

I really do not know how to respond to those who want to tell me about miracle stories of someone learning to talk through this or that therapy at the age of 9, 12, 15, whatever. I really want to say it is none of their business. If it happens, it happens, not the end of the world if my child cannot speak. Evidently it is something they cannot accept and need to get over it.

My son did turn 12 in June and is still wearing Huggies Goodnites. I do not particularly like the questions from people asking me why he is not toilet trained or when do I plan to do it. When we are both good and ready. Case closed, butt out.

So to recap the questions I find annoying and wish they would stop:

1. Why did you wait so long to try XXX therapy - or why did you not try XX therapy?
2. What have you done to get him to be verbal - have you tried XX, I know so and so tried and now talks after being nonverbal.

3. When do you plan on toilet training?

I can do without hearing these three questions. Every kid is different, nice that yours now does this and that and was trained in one hour, two days or whatever. Stop bugging me.

20 comments:

Karen said...

Hi Bonnie,

I have been reading your various blogs and they seem to be helping me out if that helps any. I certainly empathize with you on all the questions. Enough already! I am single Mom as well in my 40's and my son with Autism just turned seven. It's been quite a journey. I have blog and it's fairly new. If you have any pointers let me know. Hang in there.

Hugs

A. Jane Chambers said...

My children have fragile x syndrome (my son also has autism). I am the carrier. After a parent group at their school, a parent of a child with Down Syndrome asked me if I felt like a defective breeder.

Good job with responding to the tough questions. I don't think there is any way to avoid them.

My Autism Insights said...

Even knowing that people are well-intentioned (usually) doesn't make the comments and questions less invasive or offensive or annoying. I hear ya. I have my own list of irritating things that people say. It takes a pretty thick skin to ha e a child with any disability , doesn't it?

Chin up!

Mrs. C said...

I'm sure you would have embarked on the journey to potty-land if you felt like he was ready. Do these people think you like changing diapers on a 12-year-old?

Isn't life hard enough without people being stupid like that? :[

And A. Jane... ohhh I can't imagine what I'd have said.

Mrs. C said...
This comment has been removed by a blog administrator.
Irene said...

Bonnie,
Are there words possible to shore you up? Surly you deserve to have them spoken to you.

Know you are not alone in your frustration over the insensitivity of others. You have single mother sisters standing proud beside you waving fists and we're all hugging each other tight.

Continue to bravely stand up and advocate - we're making noise and being heard!

Hugs,
Irene

Tanya @ Teenautism said...

It amazes me when people ask insensitive questions. I think that unless someone's asking for advice, the decisions we make about what's best for our children really do not concern anyone else. We all have valid reasons for the things we do - we shouldn't have to defend ourselves. Kudos to you for posting about it, Bonnie.

kaylee said...

I am 17 with autism and I love your blog :)

tiffrutherf said...

All I have to say is you go girl! I like your style!

tiffrutherf said...

Thanks for stopping by!! I'm from Michigan and let me tell you, our school system is like our economy right now in the toilet! In my city, the special education director told me "we cant afford to have classes for autism in our schools"..I ask "How could you afford not to?" and "What are you doing with all the autistic kids in this city?" She said "Its just now starting to become a issue"...wow...Yeah so you can see why I started home schooling!

Osh said...

Ugh, just ugh. I hear ya sister!

CC said...

Hugs, hugs, hugs!!!!

lonestar said...

Good for you, you know your boys better than anyone else!

You have an award waiting at:
http://3runningincircles.com/2009/01/overdue-thanks.html

Mary said...

I have a 20 year old young lady with autism. I understand the potty
bit. I have also faced harassment, expecting to put her into school programs that were not safe for her. She still wants her pacifier at night. Why should I take it away? It is one of the few things that console her at night. We do what we must. It isn't understood by others who don't have the problem.

Mdonachyf3 said...

My autistic granddaughter has come so far through the years. She will be 21 in March. We went through about every stage until we found psychiatric help. I was afraid of that, but I am glad I did. I found a good doctor who didn't try to drug her until she was a zombie. She can do so many things now. I'm trying to share our story online, hoping that some of the things we did can help others. It's a free site and many autistic families have visited and become like friends. I just want to help those who are going where I have been.

Tammy Lessick said...

It's amazing how similar our nonverbal sons are. I get the same questions. My son doesn't talk. I have accepted that. He does, however, communicate. The focus should be on that. He isn't potty trained(9yrs old). He's not ready. Yes, life would be a lot easier if he was, but I feel there are other issues he needs to deal with currently. Things he is ready to work on. (He got undressed and dressed this morning without me telling him. I did have to tell him to get his clothes out when he came out of the bathroom with his pajamas off). Just two weeks ago, I was doing half of the work getting him dressed and dressed.) People should just let us do what we need to do and not try to tell us we are doing it wrong. Because, when you think about it, those kind of questions have that unspoken meaning.

LittlePeopleWealth said...

People are usually well-intentioned... My sis has Down's Syndrome and another had Cerebral Palsy. It can be hard to listen to people who think they are helping :(

Holly Nappi Collins said...

I've noticed that people like to say things because they think it might help... mostly people who do not have children, autistic children and who also have a partner to help... We are only in similar situation wth our autistic kids, but I have help... I give you a lot of credit.

My advice if you want it is believe in yourself and your kids and don't listen to others; and certainly to let them upset you or move you away from getting the help that you need...

Hang in there.

Nicole Wells said...

Goodness, I can't believe the questions some people ask and the comments they sometimes make. Don't sweat them, you know your own kids and what's best for them. It's hard enough to be a parent and even harder when you have to deal with questions like that.

Amber DBTD said...

I love this post! No time for much commentary, but I'll be reading more often now that I've discovered your excellent blog!

 
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