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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The Bear Overlooking Our Home

Bear and chairWhen we bought our house in Simpsonville, one of the characteristics that made us fall in love with the house is its cathedral ceilings. They make the front area look much bigger and more open. It, also, allows us to have ledges in the living room and hallway. On them we can store and display some of our cool items: stuffed schnauzers, crocks, milk churns, books, dust and spider webs, and other treasures. (Not the easiest place to clean, okay?)
We, also, have a red, child’s, rocking chair with a stuffed teddy bear sitting in it, looking over our living area.
Saturday, we needed to go to the store and mail some stuff. We wanted to get Madison out for a while. We gathered the things he wanted: Teletubbies (of course), his I-pad, blue (This is an empty I-pad cover that has become important to him), “two book” (I will explain in another post, someday), and “red book, blue book” (two books that I am reading that he likes to have with him). Now do you see why we take a basket? And we are going to the store, what, thirty minutes, if that.
We start out the door and Madison looks toward the ceiling and says, “Red chair.” We are running late. I know, a surprise, isn’t it? So Vickie gets the ladder and gets the chair and bear down. Madison wants to put them in the car, too. Good thing we have a hatchback.
But he got in the car without out any more drama. We just have to figure out what he needs. He laughed and sang and all was right with the world.
The chair and the bear are special to my family. The chair is from when I was a little kid just a few weeks ago. I think my brother and sister used it, too. It has been through a lot. The best things usually are those you touch and use. Madison has sat in it off and on and it’s funny to see him sit in it now with his long legs. They don’t quite fit. Thankfully it’s a sturdy chair.Madison and Chair
The bear is also special. My grandmother, Sunie, made a quilt for my mom many years ago. Grandma Sunie passed away in 1985 and so did her banana pudding. My sister-in-law took the quilt and made us kids each a bear. Makes it a very special keepsake.
For the last few days, Madison has wanted the chair in the room where he is. The chair and bear sat on our bed with his Teletubbies. All in a group around him, like a school room. Seems like he wants her to be part of his circle.



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Sometimes It is Too Quiet

We have had the toughest time with Madison lately. I wanted to blog when the situation ended, but sometimes you don’t know when, or if, that will be. This has gone on for several months, starting before Christmas.

Madison was having difficulties with his throat. It was like he couldn’t swallow, or was mimicking a crane. We have seen several doctors and they all went, Hmmm. Not real helpful. So recently, Vickie read that this may be caused by yeast in his system. We have had issues with that before so we got him Candida to combat the yeast.

The swallowing got better but he lost his words. Just lost them. He can make sounds but it’s like he has lost all memory of how to use them. He was not singing and looked confused when you ask him what he wants to eat. He didn’t even repeat the words we said. They say this is part of the yeast leaving the body process. With the swallowing, he has spent more time with us in the front room. It is like he knows something is up and he wants to be with us. That’s okay, that is what parents are for.

In the last few days, Madison has started speaking and singing again. It is so good to hear and I think he likes hearing himself sing, too. He just laughs and smiles. Some of the talking can get quite loud. Oh well, it is still an answer to our prayers.

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Facing Your Fears (The Haircut)

As parents of a special needs child, or any child for that matter, it is easy to let your decisions be affected by fears; some real, most not. And fear seems to grow bigger with time. It is like it bulks up on our What if’s.

We faced this recently when we were thinking about taking Madison to get a haircut. It has been a while and we just knew that we would not be able to get him in, he would not sit down, he would holler, he would turn into a tornado and destroy the place, he would go ninja on the people…you get the idea.

Vickie has been cutting his hair and hates to do it. In the mean time, he started looking like a red-headed Ringo Starr.

Madison and I rode with Vickie to do her errands. We stopped at Chic-Fil-A for lunch. Madison looked like a big boy walking in, sitting with his I-pads, and eating his chicken. I hope the people around us appreciated the concert from Newsong.

When we left, Madison and I went to Countryboys. It is a nursery and gardening center. I like to walk around and see their greenhouse in the back.

The last time we went they had a Christmas store attached with trees and ornaments. He and I walked in once and he became mesmerized with the trees and lights. He sat down in the middle of the floor and called for “Black.” He wanted the lights out. (He is kind of bossy. I don’t know where he gets that from.) He had a point; it would have been cool to see the decorations in the dark. But we couldn’t turn off the lights.

I sat down beside him and talked to him about the lights and the colors. I can’t imagine what the clerk was thinking but I am sure she was watching us very carefully.

When we went in this time, the decorations were gone. Well, it is February.

This time we walked all through the store and he stayed right with me. He did great. So I thought, let’s try a haircut.

When I got my haircut last week, I spoke to Christian about coming to our house to do Madison’s. She said she could but why don’t we try to bring him on a day that they are not so busy. She said that we are customers and they would work with us and don’t be worried about causing a scene. Now, she has not seen a Madison scene. But I thought okay.

I always want Madison to succeed and have fun so he will want to go back. We will just try it and if he doesn’t go in, we will know.

When you work with someone with autism, it is important to get them out. They will quickly get into their own world and routine. And as parents, it is easy to get into that habit. And fall prey to those fears we build.

With Madison, I try to keep doing different things. Find new ways to go home. Take him to new places. Now, he will be wearing a blue T-shirt. And carrying one or two I-pads. And probably have Tinky-Winky as his entourage. And that is okay. As long as I don’t have to buy Tinky-Winky a ticket.

We got to Great Clips and there was no waiting. Madison walked right in, sat down and got up when he was called. He went straight to the chair and sat down. I was a little concern that the stylist came to my shoulder, but she went right to work. He didn’t squirm. Vickie and I looked at each other in shock, then relief.

No tornadoes, just a boy getting a haircut.

You never know. You have to be on your guard, but don’t give up.

Madison ended up with a great haircut. Now he looks like a red-headed grown-up Brad from Home Improvement.

On the way out, Madison wanted to check out the bathroom––a normal thing for kids, right? But then he wanted to turn off the lights, “Black!”

So, we still aren’t there. We never will be there. But we will make a point to enjoy the victories, big and small. And we will never quit the battle against our fears.

If you know someone who could use reading this, please share. And please let us know you are reading by liking or commenting. Thank you.

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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.