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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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.

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Eating Lunch With My Son

It has been two months since I left my job to stay at home. Vickie and I are starting to joke that I have become Madison’s butler.

We knew something was going on before I started staying home. Madison had become very listless, lost his appetite and refused to go anywhere. Vickie had tried several times to get him in the car to go somewhere and it often would be an hour struggle just to get him in the car.

It was frustrating because we didn’t know what was going on or how to get through. He would get stuck on a single thought and keep repeating it. The trick when this happens is to redirect the child’s attention onto something else. Madison could not be redirected.

In the last few months we have had Madison go through some medical tests. He loves to have his blood checked. This time, though, he fought Vickie and the nurse so they couldn’t get it. We took him back the next morning, and with the help of Stephen, one of Madison’s buddies, we were able to get him in the chair. It is funny how, after he was stuck, he just sat there and watched the blood flow. It was like, oh is this all. He has always been intrigued with watching his blood flow. It doesn’t scare him at all, but getting him in the chair, that is a different story.

The doctor – Madison has four and I can’t keep them straight – said he felt Madison was experiencing depression caused by a reaction to the combination of his medicines. We have cut back on one of his medicines and, slowly, his appetite is returning and he is starting to play with his I-pads again.

I often tell people autism is like a soup. With Madison, it is a mixture of autism, epilepsy and who knows what else. During his depression we taped him having a seizure in church listening to his “one hundred”’ the choir. So a lot of things were going on that he couldn’t tell us.

But today, I got to take him to Arby’s and sit inside while he happily ate his chicken strips. I know he was happy because I saw the big smile on his face. And there was a smile on my face, too.

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Watching Over Madison

I have been planning to write an article about Madison bolting or wandering away since I saw the article in Sunday’s paper. It was about the prevalence of wandering by autism children. It mentioned their interest in bodies of water and moving water. This has caused many tragic results.

It happened with Madison again today. When someone who is 15 wants to go somewhere, there isn’t much you can do to stop them.

When Madison was very young and staying in the church nursery, I was fortunate to have an opportunity to act as an interim pastor. My wife and I still laugh remembering the sight of him running down the hall with a teenage nursery helper chasing behind.

When he was seven or eight, he and I went to see my brother and his son-in-law. We were sitting in their backyard talking when Madison walked around the corner. And then he was gone.

It is amazing how quickly and silently it can happen. Sometimes we hear Madison singing, but usually not.

We ran inside the house, the clock ticking in my head because I knew the longer it took, the further he could wander. I, also, knew that Madison did not know the area and I had no idea where he would go. There were no ponds or water that I knew of so I had no idea where to look.

Just as I was preparing to dial 911, and, even worse, my wife, a car drove up in the driveway and asked if we were missing someone. We followed them as they went next door. There was Madison sitting on a lounge chair, totally shut down. They were having a party at their pool in their fenced in backyard and said that Madison had just walked in the back gate and then sat down. He was unable to speak and just sat sucking his thumb. I talked softly to him and got him to walk back to my brother’s.

He was more frightened of what happened than I was, and for the next few months we would go to their house the other way. You could see the fear on his face when we drove by their neighbor’s house.

Another time we were at home and he just vanished. We were painting a room in the back and didn’t hear him go out. It was before we got the dogs.

He was gone. It was getting dark and becoming hard to see. And I don’t know about other kids, but Madison has always been able to see in the dark. When he is stressed he often wants us to turn off the lights He points to the lights and commands, ‘Black!” Darkness does not seem to affect his movements.

I got in the car and started driving up and down the streets. There are two ponds in our neighborhood and those areas were where I was targeting.

The police showed up in about ten minutes. Just as they and I returned to check in at home, our neighbor John walked up with Madison. John said that he just saw him come around one of the houses. We wonder if he was playing on the swing.

It is a scary time when Madison disappears. He is not able to tell someone his name or where he lives. Now he is big enough that his actions and sounds would be very threatening. He, also, has no fear or understanding of traffic or any of the other dangers he may meet.

It is usually for one of two reasons that Madison runs off. He sees something that lures him. There is a blue house that he likes near us. It is similar to some others on our street but it is that one house that gets his attention. We do not know who lives there and he can’t tell us what makes it special, but he often calls for it.

The other reason is to get away from something that is bothering him. It is this second reason that happened today. We had just returned home and transitions of coming and going are very stressful to Madison.  When I finally coaxed him out of the car, he said he wanted to walk. I tried to get him to go around the block, to get out of the road, but he had a meltdown and bolted down the road.

This time we only have to deal with skinned knees and palms. This time…

We have locks on the doors and a fence around the backyard. We have two dogs that we hope will bark when he opens a door or a gate. We tell our neighbors and introduce him to each new one we meet. And we pray.

But isn’t prayer useless and silly? We only do that when we can’t think of anything else. Except…

God, who really exists, tells us that he will hear our prayer and that it matters to Him. You may not feel it, you may not believe it…and I understand both of these, I mean, he is God. What am I to Him? Why would he care?

Romans 8:32, “He who did not spare His own Son, but delivered Him over for us all, how will He not also with Him freely give us all things?”

Matthew 10:29, 31, “Are not two sparrows sold for a cent? And yet not one of them will fall to the ground apart from your Father… 31 So do not fear; you are more valuable than many sparrows.”

God said that, not me, not a person. And if God says he will watch over us, that he will hear our prayers… how can I disagree? Maybe we need to just talk with Him about it.