Gotta Laugh When You Need to Cry..

Today my son reminded me that nothing I own is sacred. After my husband and I spent a ridiculous amount of money on a new surround sound system for the living room. We sat all of our children down and explained to them once again that the items on the entertainment center were off limits. Recently the children have been doing good at remembering what is okay for them to touch and what isn't. It is taking work but they are learning.

This morning as I got out of the shower my Jenna bean came running up to me. "Mama mama," she said. "Mason stuck a toy in the hole." My first thought was what now. Apparently, when you become a parent showering in peace is not part of the agreement. I asked her to show me what hole she was talking about. She ran in to the living room and pointed at the sub woofer that went to the new surround sound system and told me "Mason put Pinocchio in the hole."

I sighed and grinned when I realized that Pinocchio would forever be deaf!

Once again I managed to make myself laugh when I wanted to cry.

Don't be a hater.....

I was recently surfing the web in a desperate search for other bloggers like myself. While looking to connect with other parents of Autistic kids I came across a blog one which gave a two-fold reaction. For privacy sake, I will not disclose any information about the blog only that the person writing the blog, while I felt they had good intentions by asking hard questions, they needed to be made aware that what they had to say was coming across quite offensive and insensitive to some parents of Autistic children.

I was offended mostly about this person saying they were upset at having to deal with Aspie children...a term which may I remind people is not appropriate to use in reference to someone elses child. Used around people you are not familiar with can be construed as rude. I would not advise using the word Aspie in general conversation unless talking about your own child.

One of the things that upset me the most was the comment about how the parents of these Autistic children are letting their kids slide on their behaviors. That they are rude and she would tell her children to ignore them or stay away from them. How it isn't fair that she has taught her children how to behavior socially exceptable and its not fair that parents of Aspies let them get away with inappropriate behaviors.

First of all, She has no right to comment on the raising of children she knows nothing about. Secondly, They absolutely should be shown leiniency on their inappropriate behaviors. Would you punish a crippled child for falling if they don't have full use of their legs?

I am saddened by this persons close mindedness and wonder exactly what kind of values of tolerance she is instilling in her own children.

For those of you who might not understand where I am coming from. I would like to share a story with you. I got a call from the school one morning. The call simply stated that Mason had lied to his teacher. The school has a very annoying habit of calling everytime that Mason has an "off" day and asks the same question. "Has Mason had his medicine today?" The obvious answer: Yes. He has it every morning. Apparently, they believe that medication makes perfect little robot children. Boy do they need to wake up and smell the Focalin. Mason was having an "off" day and the teacher asked him if he had had his medicine that morning, which he had. Mason told his teacher that the doctor told mommy he didn't need to take it anymore. Obviously by now you have figured out that this wasn't true. A normal parent would punish their child for lying. I simply told the school I would speak to Mason about it. When Mason got home I sat him down and talked with him about what had happened. After listening to what he had to say. I solved the mystery of the lie. The day before I had taken Mason to the pediatrician. He had a chronic cough that got worse and I was afraid he would need antibiotics. In a conversation between Mason's doctor and I, the doctor stated that Mason didn't need any medicine for the cough. In Mason's head all he heard was the doctor telling me he didn't need any medicine. Of course I explained to Mason his mistake and we are working on understanding how not to take things out of context.

My question to all of you is should the child be punished for the act without considering the intent?

I know that the this person won't be the last sort of ignorance I will come across. I will have to put up with different kinds of narrow minded people who will critcize how I raise my child. My advice, confront these people like I choose to. With the grace and dignity. To those who don't have a child like mine please remember. It could be you in my shoes. Think about that next time you tell your child to ignore children who are different they they are.

Ignorance breeds intolerance.

The Elephant in the Room...

I have noticed that people are always eager to talk about everything that is good and positive about raising a disabled child, people are often reluctant talk about things that are harder to bring out in the open. One of the main things being the stress it puts on a marriage.

Raising children is hard enough in a nuclear family, in our case we have a blended family situation. Which is difficult under normal circumstances, in our case of his, hers, and ours I have a child from a previous marriage who is Autistic, a stepson from my husbands first marriage who we recently got custody of, and a four year old daughter who is ours.

A situation arose this weekend that made me think how being a parent is a learning process and how it is not always black and white. This situation involved a conflict between the two boys, one which my husband and I immediately took opposing sides on. I assume you guess what ensued next..something in the realm of World War III. I felt he wasn't taking it serious enough he thought I was taking it too serious. Never a good combination if you ask me.

When the storm subsided, I started to wonder how many other couples like us are having the exact same problem. As a mother of a disabled child, I have to be honest and say that even though we as parents try to be equal I believe it is human nature to be more protective of the child we view as being more in need. To most this would be the youngest. For some it would be a child with a disability. Even though I understand that being overprotective would be doing Mason a huge disservice. I can't turn of that inside me which makes me want to protect him from everyone no matter if it be adults or other children.

I am not sure of everything. I know that I will make a mess of mistakes as a parent before it is all said and done. I know that I don't have all the answers. I don't believe that I have to. I do believe that what we all need is better understanding of conflict resolution.

Pretty much how not to ignore the elephant in the room.

Strange Sense of Awe!

I realize that I have already posted a blog entry for today but I felt the urgent need to post about my experience. I will call it my moment of awe. My friend Brandi recently informed me that she was going to start using her cafemom account again. I told her that I would start using mine again, thinking that it would be a much better resource for chat forums about children with Autism. Needless to say, I had forgotten about it for a few days until just a few minutes ago. I thought to myself I really need to update mine and just maybe I will come across some more readers for this very blog. Now don't get me wrong, I write this for myself as well and even if no one else read it. I would still write it.

As I was going through updating all of my profile and joining new groups of Parents with child who have Autism or any other number of pervasive disorders. I came across a journal entry that I had posted. The question was: Have you every been selected for jury duty?
My answer was this: Yes. I have been selected three times. In fact, I have to be at jury duty tomorrow on September 11. This journal was posted September 10.2001.

I stopped for a moment. In silent prayer. Trying to remember when the last time it was I had thought about that day and why I remember I was washing dishes with the TV on when the news broke. But why was it I couldn't remember I was supposed to have jury duty that day.

Although, It has been many years since that day and many don't think about it. I believe that tonight the good Lord was trying to remind me to be thankful and pray for our fellow man even if we don't know them.

And that something as small and insignificant as a journal post to a silly question can serve as a reminder of things we shouldn't forget.

Pieces

There is a tremendous sense of loss.
When the pieces don't fit the frame.
The sudden harsh realization
Your lives are never the same.
What about little league?
and cub scouts in the fall.
Will he ever get married?
or fall in love at all.
Every parent grieves
Every parent cries.
But eventually with time.
The wave of emotion subsides.
Tears replaced with patience.
and Sadness with a smile.
You celebrate uniqueness
Find joy in the smallest bit
Even when they tell you
The pieces will never fit.
There will never be another
neither near nor far
None will shine so brightly
As your own little star.
You'll rearrange everything
Your schedule, your thoughts, your life.
Somewhere amidst the chaos
You finally realize.
It will never matter to you.
if the puzzle is not the same.
You'll piece it together anyways
Regardless of the frame.

Written by: Monica Swain May 2010

Realizing my thoughts are completely random!

So yesterday I got the bright idea that I wanted to pay more attention to my blog. I even got the crazy notion that maybe one day I would turn my blog into a book. Obviously forgetting that I have no experience in writing save what I learned in high school and college which is far from what is needed to be a professional writer. Also finding out that I haven't the foggiest idea on how one would go about getting publish should the chicken scratch I produce be interesting to anyone. So I did what any half way educated person would do...I googled it!

Yep. You guessed it I googled "How to write a book."

Note to self: Google is not omniscient and buy a dictionary.

My Aspie Chronicles.....

I realize that I am going to have to rewind a little bit because I haven't blogged in a few months. So here is the 411 on the current goings on.

Autism Conference-The autism conference was absolutely amazing. I was a nice feeling to walk into a room and see so many people. There were many educators and parents from around our area. It is a great feeling knowing that you aren't alone. Not only was it great to talk to people who know exactly what you are going through, but I feel as a parent I should stay up and current on the current research as well as other issues that as a parent of an Autistic child might need to know. After the conference, I had a lot of questions. I took lots of notes and made sure that I jotted down any questions I wanted to remember to ask Mason's doctors. During the conference, there were a couple things that caught my attention. One was sensory integration therapy and the other was psycomotor epilepsy. After the conference, Mason had an appointment with a behavioral pediatrician in Lubbock.

Lubbock-The pediatrician in Lubbock was absolutely wonderful. She was very informative and listened when I mentioned that I was concerned about psycomotor epilepsy and was interested in having Mason evaluated for Sensory Integration Therapy. Mason's regular pediatrician in Abilene has told me that Sensory Integration Therapy was trendy and there was no scientific proof that it worked. I asked the Dr. in Lubbock about it she said that he was right however; that Sensory Integration Therapy is not a fix, which I already knew. But that it can be used to helped the child attain certain goals. To date he is not getting it yet but we will see what the future holds. The Dr. in Lubbock gave Mason an EKG. For those who don't know what that is, it is where they check the functioning of the heart. I was told that now it is something pretty much standard for children who are on long term medications just as a precaution. She also wanted Mason to have an EEG. That is where they check the electrical activity inside the brain. All in all it was a good visit and he will be going back to Lubbock every six months for a check-up with the Dr.

The most recent thing that is going on is Mason has had his EEG. I was devestated to find out that the results were abnormal. What they told me was that they saw slowing of brain activity. I am unsure of that that means. They told me that could mean siezures or it could be any number of other brain disorders. I thought for sure that the test was routine and that everything would be okay. I was told that I shouldn't be suprised that I knew Mason wasn't normal and I should expect things like this but the truth is. It doesn't matter that I know Mason has problems, everytime you hear that something else is wrong it is still devastating and you still need to grieve. Mason has been referred to a neurologist. The appointment still hasn't been scheduled yet so I am still waiting for answers.

If I could leave any advice for parents like me it would be don't give up. If you truly think that something is going on push the issue to have it looked at. You know your children best. Be their advocate.