startedinnc

This blog is about a family of two loving parents, two sister schnauzers, a persian, and a very loved young man who faces severe autism daily, sometimes better than others. We will relive the lows, laughs, and joys of our "normal" life. Always under the hand of God.


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Free National Parks Passes for People with Disabilities

PRO-Parents, in their December newsletter, informed us that U.S. Residents with disabilities are able to receive a free “Access Pass” that offers lifetime admission for the passholder and three other adults. These were be good for the national parks.

Quoting from the newsletter, “To receive the pass, individuals with disabilities are asked to present official documentation of disability status to the National Parks Service, either in person or by mail. A physician’s statement or a document issued by a state or federal agency (e.g. Veteran’s Administration, Social Security Disability Income, Supplemental Security Income) is acceptable. Learn more about the Access Pass program and locate recreation sites at nps.gov.”

There is a $10 processing fee.

Thanks, Uncle Sam.

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Madison’s World; or darkness and the Teletubbies

We’ve had a big week with Christmas and the days immediately afterwards. We had a photographer come and take pictures of Madison, me and our Christmas decorations. One problem, we didn’t decorate much for Christmas this year, because no one was coming here. We did not have the traditional tree this year, just three small trees in front of the fireplace.. We weren’t really a festive home this year because we live here too much.

(I will tell you later why the photographer came. I am so excited.)

Vickie thought he would take just a few pictures. Instead it took two hours, two homes and a wardrobe change. Most of the pictures were Madison and me, Vickie playing grip and set designer. Madison did great. He was very patient and listened to orders. We stayed seated on the floor and Madison would go, “Say cheese”, with an exaggerated smile. The dogs stayed in the truck, this was about Madison. But I did get Wilson our cat in a few shots. Then he got up and sauntered out. There is no hurry in him unless the dogs chase him.

The last hour of pictures was done at Miss Pat’s house which was spotless. It is crazy for it to look that good the day after Christmas, especially with a large family having opened presents there the morning before.

Madison lasted through all the shots (over 200!). Miss Pat sang for him and kept his attention directed toward the camera.

But I want to tell you about Sunday morning. Madison never ceases to surprise us. It is hard to realize and appreciate how into his world he is. It just isn’t necessarily our world.

We got ready for church and into the car. Vickie and I are always nervous when we get in the car to take Madison somewhere. We are never sure what he has in his mind we need to take. And he usually can’t tell us.

Now, to me, that should not be a big deal. I am the father, I should just be able to authoritatively ordain something and we continue on. I can hear the snickering now. But when I watched my nephews when they were younger and other young children, I could usually find a good compromise. But not with Madison. When you can’t communicate what you want, you can’t compromise or explain. Usually our problem is he can’t tell us what he wants. So we all get aggravated.

When we are in the car, Madison will motion to Vickie for something. If we start to leave he tries to get the gear stick in the car. Not good. And with his autism, a tantrum can last too long to drive safely in a car.

So Sunday he wanted ‘Por Po’. We had no idea what that was.

The last few weeks, we have gone to church and everywhere else, without the Teletubbies (of which Po is the smallest and red one), even without Tinky Winky (which seems to be Madison’s favorite). We were taking just his I-pads and his new I-pod.  I (stupidly) commented on how easy it had gotten. I know, I knew when I did it I was going to eat those words, but we had seen a big change.

But this time Madison wanted ‘Por Po’.  Vickie brought out all his Teletubbies she could find, but he still called for it. Was it a picture he had drawn, a toy? We didn’t know.

So I got Madison out of the car to find what he needed. He went and stood in the kitchen. What is he doing? He needs to go to the bedrooms where he stays most of the time and we knew it would be. We are running late and we don’t have time for this.

Then he opened the laundry room door. I was about to get him and lead him to the back of the house when…

He comes out with a little Po. How did he know it was there? He doesn’t go in there and especially recently he stays mainly in his or our rooms.

Madison takes ‘Por Po’ to the car, gets in his seat and starts happily singing, ready to go to church. All is well with the world, his world, again.

After our church sang, we got up to leave which has become our habit. We always go out the door in front of the sanctuary that we enter. We then usually stop at the chapel where he sings to one of his Teletubbies or to his I-pad. (I’m glad the chapel is empty.) Then he leads us to the car. We have been doing this for years and he gets agitated when we deviate from it.

But this time when we start to leave, he is pulling toward the back of the sanctuary, through the people as they greet each other and shakes hands. I always get nervous that he may push someone. Several years ago, he wanted to draw a Teletubbie on the wall of the sanctuary so that is also in the back of my mind.

I told Madison to come with me, that he could sing in the chapel and we would go to the car. But he was insistent in going toward the back. So I followed him and he walked straight out like it was no big deal. Then he pointed to the baby room and said, “Black”. See what a long-winded talker he is.

Our church has a little closed-in room off the vestibule with a window into the sanctuary where you can take your wriggling, crying baby but still see and hear the sermon. We tried it with Madison many years ago but he wasn’t interested, so we gave up and forgot about it.

Now, let’s look at what he did because two things stand out. First, he pointed. Madison does not point. Isn’t that silly? Everyone points, it’s just natural. Madison does not seem to understand the concept of pointing to something. When he does point it is just aimlessly, usually into the air. We will ask him what he wants, or to show us one of two things on the table, and he will just look at us helplessly. He does not understand it. But this time, he pointed.

Second, ‘black’. Madison likes a dark room. When he is going through a stressful time, he will want us to turn out all the lights in the house. So we will be sitting around in the dark. Our problem is that he can see in the dark. That is why we are so afraid he will get out of the house at night when we can’t see him. He does this at the doctor’s office so we always hope we get a room with a window. And he has been sitting in our backyard and, looking up at Vickie, reached toward the sky and said ‘Black’. No son, we cannot turn of the sun. You have to go to the other Father for that.

This Sunday we got to hear the sermon, the first time in several years. He enjoyed sitting in the dark and rocking in the glider. Singing and laughing without bothering others. Happy, and maybe, just maybe picking up something.

But what caused the changes? Such is life with Madison. Some children need a firm hand, others need more flexibility. They don’t come with warning tags, do they? We will just have to stay tuned into those times when Madison is opened to something new. And then help him let his world expand in ways that he can accept.