Finding a Place

I frequently use some phrases. Some are more colorful than others. One of the phrases lately comes from a song. The phrase is: my place in this world.

You see having a child with a disability changes your thinking. You understand with certainty that you and this child may not share the same goals. Things parents dream of for their children may not be possible. Sometimes these dreams just aren’t the same and really don’t become the child’s own desires.

Two years ago, some teachers asked me about a short term goal for Tiger. I said that I want to play catch with him. The ugly truth is he wasn’t interested in playing catch.

So now I look at things differently. I try to consider his desires more. What matters to me is helping him find his place in this world. I realize that I don’t control what that place will be. The big challenge is finding the desires of his heart.

If I can only figure out what he truly desires then I can help him achieve his own goals. Thoreau was so right; most men do lead lives of quiet desperation. Those who live deliberately seem to have clearly defined desires. They strive after the longing of their hearts. Those who do not strive for their wants still want. It is all about simplicity.

I want my children to do more than long for their goals. I want them to achieve their goals. This will never happen if I obsess on projecting my own agenda on their lives.

My children are far too independent to be molded. I can’t force them to be what I want them to be. Perhaps I should start leading them instead. Tiger’s autism only accentuates the truth. God makes children. Parents just raise them.

My deepest desire is that all of my children discover what they are chosen to be. They all have a place in this world. Maybe I can help them find their place. Or, maybe they can find it without any help.

What Can I Say?

Autistic people cannot reasonably be expected to exhibit personal qualities and behavior identical to that of their typically developing peers. When difficulties arise, intelligence, compassion and humility are in order, not arrogance, negative judgment and contempt. An autistic person should no more be held at fault for eccentric or challenging behavior in a social environment than should a visually impaired person be held at fault for difficulty navigating an unfamiliar environment. It is inherently discriminatory to scrutinize a person with a cognitive or sensory difference, then to penalize them for the very challenges that accompany that difference. It is unconscionable to employ governmental power in an attempt to enforce such discrimination. It is inaccurate and disgraceful to suggest that contact with persons with cognitive difference poses a threat to others. It is particularly inhumane to inflict such damning judgment upon a child.

And THAT is what I should say to the next judgemental idiot who has something snarky to say about my son's behavior in public!

This is a part of an article written by Kathleen Siedel, the Autistic Distinction. Its over on Neurodiversity.com. I just love her and what she has to say about Autism.

Texas State Fair 2005

I love this pic of my little Tiger with his daddy.
Tiger was pretty well behaved considering all the activity going on!

You know the corndogs had to be amazingly good at the Fair for Tiger to be eating them!

Actually he has been surprising me lately with his food choices. He was so picky for a long time, I worried that I would have to be giving him major supplements for his nutrition. As of a few weeks ago he has discovered peanut butter sandwiches again. And his new absolute favorite is grilled cheese. But not just any grilled cheese sandwich will do, it has to be the way daddy makes it. He puts a little butter on the bread and cooks it in an iron pan. So delicious! Tiger will get the bread and the slice of cheese and hand it to his dad. Tiger loves to help us cook. If it needs stirring, he's our man.

I noticed the other day we had 3 bottles of ketchup in the fridge. As I was pouring the other two into the one Tiger saw me and just beamed with happiness. He looked at me as if to say, "thats cool! You like what I like!" He LOVES to pour water back and forth into various containers. Then something Autism Diva said the other day popped into my head. If the kid likes water, use it to teach him other things. Tiger's positive reaction to me pouring ketchup makes me hopeful that I can teach him something and he will be interested. I know I can't crash his water play, but if I do my own, he may want in on that. Now I just have to figure out what I can teach him with water.

We went to the Texas State Fair. It was good fun but it ended up raining on us. Luckily we saw just about everything by the time it was coming down hard. Tiger wanted to run off quite a bit, but so did our other two children. Maybe next year Tiger will want to go on the giant ferris wheel with me an Alex. I don't imagine he is scared of heights. I will post more pics of our adventures soon!

Tiger's Stripes

"when parents say, 'I wish my child did not have autism,' what they're really saying is, 'I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.' Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces."

Don't Mourn For Us, by Jim Sinclair.


I read this snippet over on Aspergersexpress.com. I couldn't access the whole article. So I think back to all my stressful times and wonder if I ever said those words out loud. I think maybe I did say things to that effect, out of frustration. The fact is, I do want my Tiger to not have autism. But I know thats impossible. I don't love him less than my "normal" children. I love him enough to let him develop to the man he will be someday. I want him to be self sufficient. He is already so independent, I know this is what he wants as well.The only behaviors I want changed are the dangerous ones.(i.e. the hitting!) I see his frustration at not being able to speak. I accepted long ago that he would be who he is. And that is , MY SON. He just happens to have autism. And big brown eyes. And an amazing smile. A hilarious giggle. He loves the water, sand, puzzles, Batman, other people's french fries, little black puppies, magnetic alphabet letters, Dr. Seuss books, and Magnadoodle (broken out of the frame so he can use both sides.) His favorite color is blue. He has a little black weiner dog. His best friend at school is named Matthew. He has 3 sisters and a brother that he loves to wrestle with. He gives kisses when you ask. He loves to roll himself up in a blanket for bedtime. Of course there is more than I can ever list. He is forever interesting and wonderful to me and his father. I hope this Tiger never changes his stripes.

No Hitting!

No hitting. That's a phrase used in my house ad nauseum. We say this to Tiger all day every day.
As of late he is hurting himself to the point I think he may do some real damage. Last week at school he head banged something and cut through his lower lip. His father had to go to the school and see if he needed to go to the hospital or if we could take care of it with liquid bandage. Luckily it was not as bad as it sounds. Liquid bandage did the trick.

Now, if you have never seen the fit of a child with autism, well, you just haven't seen anything. Fit may not be the best word. Wall eyed fit is something one would say here in Texas, but I am not sure how to explain what that means either. Its so bad that if this were to happen in public we would most likely be arrested. The scene is so physical, that if you didn't know what was going on you'd be sure we were beating him. If you looked at his physical bruising, you be sure we are beating him. If you looked at his bruised up face...you'd think for sure someone is beating him. What we do is try to hold his hands so that he can't hit himself. He is so strong that we have to sit on him. He tries to bite and then we pin him more.

Tiger likes to hit and slap things with his hands. He likes to slap his own forehead. He likes to ram himself into the wall. He likes to head butt holes into the wall. There are countless holes in the doors and walls of this house. Lately he does this new thing where he hits himself until he bloodies his nose. He did this night before last. His daddy wasn't here to help me. It took all the strength I could muster to keep him down and from hurting himself. This went on for about an hour. You'd think he'd exhaust himself and quit. But he kept on going and going. And at the end of it I was left bewildered, and exhausted. I don't know what to do with this situation anymore. He can almost over power me...and he is 7! So besides working out with weights to get strong enough to be more able to hold him down, what can I do? The problem is not being strong enough to hold him down. The problem is that he needs to be held down.

I've written before about how his autism doesn't rule everything I do. But it does have a serious effect on everyday life around here. I have to keep the front, back, and garage door locked at all times.(Or he may run away.) All the bedroom doors have locks. Most of our food is in the garage.(because he will get all the goodies out and put them in various parts of the house.) We can't go to movies as a family. We can't go to church as a family. We rarely go out to dinner as a family. We can't often go shopping as a family. His behavior IS starting to dominate our family.

There is hope. His behaviors change. We used to have all sorts of problems with him that are no longer an issue today. I used to have to practically sit on him to get him dressed in the morning. He was 5 before he was completely potty trained. Just last year we couldn't keep him from coloring all over the walls, tables, furniture. He no longer does this. My hopes are up that this too will pass. Hurting himself has got to pass. I hope one day there will be no more hitting.