When We Went To Camp-2

When PJ and I went to camp, it was a time of renewal for both of us, but it was also an eye-opening experience for me. Autism is so consuming of your time, energy and emotions that I forgot that there were other disabilities and other parents with challenging situations.  Here at camp, I was exposed to children and adults with other disabilities.

In my role as camp counselor, I was supposed to help the other campers as well as  take care of PJ. Some of the campers had multiple disabilities. A camper who was deaf, blind and mute wanted my help. She took my hand and was trying to write a word on my palm, which was her method of communicating. Not only could I not figure out what she wanted, I almost walked us into a tree because I was looking at her instead of where we were going.

This person with multiple disabilities finally got tired of me, dropped my hand and  I helped her find a real counselor. The counselor said that the girl was trying to write the word “nurse” in my hand because she wanted to go to the nurse. She could write a few easy words in your palm when she wanted to communicate, but I could not figure it out. I felt incompetent at not being able to help her, but it helped me to be more sensitive to people who were not able to help even  if they wanted to.

What I was good at was listening and talking to the verbal campers. Every day, I talked to a set of blind twins who were in their fifties.  They told me terrible stories of how they had been abused by their stepmother and step brother. They said that their father didn’t know how they were treated when he was not around and they didn’t tell him because they wanted him to be happy.

Though they were considered retarded, they came up with ways to get back at their stepbrother. They lived in an upstairs apartment and said that they learned to count the steps that it took to get downstairs and pass under the window. They dropped a radio out the window just as the brother was passing under the window. It hit him on the head. They were laughing as they told me the story.

They did quite a few things to him and always pretended it was an accident caused by their blindness and retardation. It was interesting how close they were and how they helped and supported each other. They were far more intelligent than people gave them credit for.  They said that being under- estimated didn’t bother them because it helped them get away with whatever they did. They would say, “It was an accident because we can’t see”.

They said that they had gotten tired of the stress of trying to figure out and find what clothes to put on each morning. They solved this problem by sleeping in their clothes. This made the start of their day much easier and they were proud of themselves for having come up with this solution. I was proud of them, too. They had other solutions  to problems that they had come up with on their own.

This trip to camp made a lasting impact on me because it helped me to see past autism. I had come to camp feeling very sorry for myself but by the time I left I realized how blessed I was. As much as I hated to admit it, things could have been worse for PJ. He can not talk, but he can see and hear. He has never been abused. I left camp with new physical  and mental energy.

I read one of my favorite scriptures, Romans 12:2. “Be ye transformed by the renewing of your mind”. I now realized that renewing of the mind is possible. Paying for camp for needy children is one of the most helpful things that the PJ Foundation does. I know it helps.

Until next time; May you, too, be transformed by the renewing of your mind.

Claudreen Jackson

When We Went To Camp

When we went to camp back in the early 1980s, there was only one camp in the state of Michigan that accepted campers with autism. There was another camp that would accept campers with autism for two weeks during the summer. If you missed that two week window, you were out of luck. I hope some of you younger parents will let me know about the camp situation for campers with autism. I know that there have been some changes, but I don’t know how much.

I was on the state board of directors at that time, so I was trying to get more camps to accept campers with autism.  I did not have any luck. Then a friend of mine got a summer job as a cook at a camp for children with disabilities. OK. so now I thought I could send PJ to that camp. Still, no luck. They accepted campers with any disability. Any disability except autism, that is. They explained that they did not have staff who were familiar with autism. They did make me an offer, though. PJ could come to camp if I came with him as his counselor.

I took them up on the offer. I thought that maybe exposure to someone with autism would help change their rules. They said that I could also help be a counselor for the other campers.

So, off to camp we went. PJ and I both like water and trees, so spending our days  outdoors was good for both of us. I could feel the both of us calming down. The healing properties of nature and all the fresh air and sunshine was just what we needed. We did not eat meals with the other campers, so when they went to meals, PJ and I had the camp all to ourselves. We both loved it. This experience is one of the reasons that when we started the PJ Foundation, paying for camp for children whose parents could not afford it was first on our list.

The camp was on a lake, so the staff took us on boat rides. One day, while everyone was at lunch, PJ wanted to go on a boat ride. He was pulling me toward the water. He was even saying “boat” and “water”. The more I tried not to go toward the water, the more agitated he became. (You know how agitated they can become).  So, I decided that we would get into one of the paddle boats and stay near the shore. We walked down to the water.

However, when we reached the shore, common sense returned and I knew that getting into a paddle boat with an agitated PJ was an accident waiting to happen.  Everyone was at lunch so there was no one to save us if something did happen.  Now, what do I do? I knew that walking away from the water would increase PJ’s agitation. There were a couple of canoes on the bank. So we got into one of the canoes while I tried to figure out what to do.

We sat in the canoe and looked at the water.  We sat and sat and sat.  After nearly an hour, I could see that he was peaceful and calm again. We got out of the canoe and walked  away.  He was happy. How could I have known that sitting in a boat on the shore and looking at the water would have the same effect as actually going for a boat ride? I would never have predicted that it would work out that way.

PJ has been going to camp most summers since then. At age 36, he still loves camp. I cannot mention the word “camp” too far in advance, because he will go and get his suitcase. There are only two camps in the state of Michigan that accept all ages and all disabilities.  He attends St. Francis on the lake and if you go to their web site, you can see a video of the camp and my interview about the camp.  PJ’s Foundation also donates to the camp and I wish we could do more.

Until next time: May you have Peace, Love and Prosperity in your life.

Claudreen Jackson

What PJ Has Not Learned

It seems that most of PJ’s 36 years have been spent with us trying to teach him something. By now, I have accepted that there are things that he cannot or will not learn. Because he has taught me about unconditional love, I love him just the way he is.

PJ has not learned to navigate independently in the community.  We went through a phase when he would leave the house when I was in the bathroom or bedroom (and they say that people with autism  are not sneaky). Of course, as soon as I discovered that he was gone, I would look for him before he got too far away. He moves very fast, so I had to move fast , too.

Once, a stranger rang my bell because she had seen PJ barefoot and in pajamas on the next block. She had questioned him and of course he wasn’t answering , so she called the police and started following him to keep an eye on him.  She followed him home and let me know what had happened as she cancelled the police call. I had only been upstairs for five minutes, so I wondered if he had gotten that far that fast, but I thanked her for her concern.

The next time he left the house, I was ready. I went upstairs and waited. Sure enough, he left the house, but this time I followed him. He was down the street, around the corner and on the next block in two minutes. As I tried to catch up with him, he crossed a street while the light was red. Thank God no cars were coming! I caught him, took his hand and brought him home. He came willingly which was not always the case. These incidents stopped once I had a bell installed that rang when the door was opened from the inside and he found out that he couldn’t leave without me knowing.

He has not learned to distinguish whether a public rest room is for men or for women. I used to take him into the ladies’ room with me until he was about nine and the ladies started complaining. I tried to explain his condition, but this was in the 1980s and autism was far more rare than it is now. Ladies didn’t care what the situation was, they didn’t want him in there. So now, I had the fear of letting him go to the mens’ room alone.  Now, when we are in public, I have to make sure that he goes into the mens’ room. He has walked into a ladies room, but I quickly showed him the mens’ room. I have tried to teach him to read the word on the door, but don’t know if he understands.

When I found out that he was interested in the washer and the dishwasher, I thought I could teach  him to use them. I taught him to measure soap or detergent, but found that when my back was turned , he would pour it all into the washer.  He ruined a load of clothes by pouring a whole bottle of bleach into  the washer. He would run the washer just to see the water, so I would have to put clothes in to show him that we didn’t run it empty.

What bothered me for years is that he has not learned to talk. I finally realized that he is not deprived of anything that he wants or wants to do. When we go shopping, he picks up whatever he wants.  He is totally independent at home, so he takes care of his own needs and wants.  He does not want conversation enough to even try to talk. I have accepted what is.

Until next time; May you have peace, love and prosperity in your life.

Claudreen Jackson

 

 

 

Housebroken

No, we don’t have a pet, so that is not what I am talking about. I am talking about the housebroken that happens when your house is broken into, as happened to me last week. Yes, I have a burglar alarm, but no, I did not have it on. I was gone for only three hours, from 1 to 4 p.m. I was running some errands in the neighborhood, knew that I wouldn’t be gone long, so felt that it was not necessary to put the alarm on.

The burglary and vandalism was reported by Fox News and if you saw the report, you saw what a mess they left. Pulling out dresser drawers and dumping the contents, emptying shelves and even unmaking a bed. I had been feeling secure because of the burglar alarm, and I thought of breakins  as happening at night. (I do know better). I have learned my lesson and will always turn my alarm on when I leave the house.  Thank  God that PJ and I were not at home, but of course they knew that.

Many times. I would not set the alarm because I did not want PJ to become interested in it. You never know what will interest him. When he discovered the thermostat for the furnace, he was constantly turning it up or down or off. When we became extra cold or extra hot, we would check the thermostat, and sure enough , the setting would be changed. When it first happened, I almost called the furnace company before I realized what had happened.  When I caught him changing the thermostat, I  told him it would break.  That seemed to stop him.

The burglars entered and exited through a window. They took a lot of items,  but they did not take anything big.  I was surprised that they took my prescription pills, (they left the Motrin). That meant I had to call the insurance company and the pharmacy to replace the medication. I believe they were looking for drugs, money and jewelry.

The conversation came up again about me moving out of Detroit. I love Detroit and I feel that the negative happenings are reported far more than the positive. There are many wonderful people and places in Detroit and I realize that negative forces are everywhere.  There have also been burglaries in the suburbs, (maybe not as many) so I am staying put, but now I am a little wiser.

I’ve said that having a child with autism does not exempt us from all the other problems in the world. I think that having a child with autism for 36 years has helped me to know what to not let upset me. I have reached my saturation point in getting upset and try to remain  as calm as possible, now. PJ is more calm when I am calm.

I consistently read things that help me to remain positive.  In 1995, I published a book of poems that I wrote , “Let There Be Light”.  During that time, I was reading a very uplifting publication called “PhenemonNEWS.” I included something in the book  from “PhenemonNews” and I am including it here. It is a quote from one of their contributing writers Rishikavi Raghudas.

“Darkness is capable of anything. I will not contribute to this horrifying twilight. Though all the terrors of the night be all around me, still I will celebrate the Light and glorify the dawn.”

Until next time; May you have Peace, Love and Prosperity in your life.

Claudreen Jackson

What PJ Has Learned

The adult PJ is very different from the person he was as a child. He is still handicapped by autism, but he has learned so much that I am proud of the person he has become. He has overcome a lot of obstacles and made far more progress than I would have predicted. When he was younger, there was so much focus on the “cure” that I would never have thought I could be proud of him if he still had autism.

PJ has learned to have patience. He will wait for food or whatever else he is interested in. The younger PJ would have a meltdown if everything did not happen immediately. He no longer wakes me up at 7 a.m. to cook his fries. He will hover around my bedroom door, but he will not disturb me. He either waits until I get up or he cooks them himself. He also cooks his own sausage or bacon.

He has learned to do his own grocery shopping. He always buys the same things, but he loves to go to the market. He buys his favorite items, but we did have a time when I had to let him buy maxi pads in order to not have a scene in the store. I later found out that he liked the commercial for the maxi pads because it showed flowers and waterfalls. The commercial sold him on the maxi pads.

There was a time when he would try to open everything that he picked up at the store immediately.  I would try to stop him and this always created a scene.  He was trying to open a large bag of potato chips and I was trying to stop him. The bag burst and chips went everywhere. He was protesting loudly and we were leaving a trail of chips all through the store. Of course, all eyes were on us. I quit taking him to the store after a few scenes like this.

Now he has great patience and dignity in the market. He never liked to wait in line, but now understands how to wait his turn.  He now waits until we get home to open things.  He used to open large bottles of fruit juice and try to drink them while we were in the store, but not anymore. Grocery shopping with him is no longer the embarrassing ordeal that it used to be.

If we went to a fast food restaurant and you were walking out with your french fries, PJ would snatch them from your hands before I could stop him. I heard a lot of remarks about my rude child and what a bad mother I was. Thank God for drive through! That is how I solved that problem. Now, he knows better and your fries are safe.

He has learned tolerance. He would not tolerate any noise or action that he did not like. I’ve said that he was like an old man with bad nerves. He does not like ear plugs, but wears noise canceling headphones to shut out noises that hurt his ears. (Something else that I learned from Temple Grandin).

He has learned to respect closed doors. You can hear him hovering outside the door, but he won’t open it. He has learned to take himself to time out when he needs it. He will go into his room and close the door when he needs to calm down. I also respect his closed door.

He has learned to follow directions. He used to hate for anyone to give him directions. One of the characteristics of some people with autism is that they are resistant to learning. PJ was one of those people. Now, he seems to want to learn things. Since he loves to cook and help out in the kitchen, I could give him simple directions, but when I asked him to bring me the flour, he brought me flowers.  Oh well!

The author and poet, Maya Angelou says that “When you know better, you do better”.  PJ knows better and now he does better, autism and all.

Until next time; May you have Peace, Love and Prosperity in your life.

Claudreen Jackson

The Identification Situation

We’ve had various ways of handling the identification situation with PJ down through the years. He doesn’t like to wear anything around his neck, so we had ID necklaces that he was constantly taking off. (He did keep them on when he was with his classmates who were also wearing them). It was the same thing with ID bracelets.  He was better at not removing ID pins because they didn’t seem to bother him as much.

After he became an adult, I relaxed about the ID situation because he is never alone in the community. He has official state ID, but it is never in his possession because we had extra obstacles obtaining it. I want to make sure that we always know where it is, and with his habit of taking ID off, I didn’t want to take any chances of it getting lost. What is important to us is not what is important to him!

I wasn’t really concerned about his ID until lately. The transport van that picks him up for his day program was involved in an accident. They called me to inform me of the accident and to let me know which hospital he had been taken to. I was praying as I rushed to the hospital that no one was seriously injured.

When I got to the emergency room, PJ was stretched out on the hard backboard that accident victims are placed on. He was in a neck brace and had  an oxygen tube in his nose. He was uncomfortable, but my prayers were answered  and  he wasn’t injured. I am so proud of his maturity, because the younger PJ would have been aggressive and hard to control. He was calm and quiet and smiled when he saw me.

The problem was that he was listed as “John Doe” because he couldn’t answer any questions. I did get a chance to talk to the driver who was also in the emergency room. She, too, wasn’t seriously injured and was worried about PJ and her other passenger who is also non-verbal. She said that a car  ran a red light, hit them,  spun them around and they kept on spinning before they hit something and came to a stop.  Everyone was dazed but she did manage to give the emergency technicians the names of her passengers. The accident was shown on the news and one of the vehicles had a lot of damage, so it could have been much worse.

We don’t know what happened to the information, but once she and PJ were put into separate ambulances, he was on his own.  Of course, he wasn’t answering any questions. He wears noise blocking headphones and one of the ER doctors said that he thought that was why PJ wasn’t answering questions. (You know how typical our autistic people look). He took the headphones off and found that PJ still couldn’t answer questions.

Everyone was relieved when I got there, including me. I felt that the doctors did a good job of checking PJ out and I was very grateful that there were no injuries. I was very grateful that PJ was pleasant and co-operative during the poking and prodding. He even  took his tetanus shot with dignity. It hasn’t always been like that. Some of my worst experiences with PJ have been on doctors’ visits.

PJ could have been  John Doe for far longer than he was. Talk about something that I had not foreseen. If he is not with someone who can speak for him and he doesn’t have ID, he becomes John Doe. I had not thought of this because he is always with someone. I had forgotten about “in case of emergency”.

I am now pinning  ID to his coat and hoping he will let it be. I am now trying to teach him that it is important. Maybe his John Doe experience will help.

Until next time; May the favor of God be upon you as it was on us.

Claudreen Jackson

The Beautiful People

The Beautiful People. That’s you! If you are the parent of a child handicapped by autism or any other disability, that’s you. Even if you don’t look like it or feel like it, I know what you go through and how you love your child through all the challenges that you face.

When PJ was born, I was hanging out with the Beautiful People in  the show business world.  Life was a series of parties, shopping sprees, traveling, hit records  and concerts. Every day was a new adventure.  I was thankful to have such an exciting life.

Then, along came PJ. He was on the severe end of the autism spectrum, non-verbal, hostile, aggressive and hyper-active, with mental retardation thrown in. I was at my wit’s end. His behavior was so challenging that I couldn’t even PAY someone to be his sitter. (I hope that things have changed). I was afraid to leave him with anyone. So now, I spent my days trying to cope with autism and just trying to get through the day. I felt like life was passing me by. The life I was used to was over.  Now, life was a different kind of adventure, an adventure that I didn’t want.

Then, I met the other Beautiful People. Parents of children with disabilities and professionals who worked with us. What a revelation! There were people in the world who cared about us, who helped us, who sacrificed for us. I learned from all of you what Inner Beauty is all about.

Perhaps you have seen some of the Housewives’ or the Sportswives’  TV shows. They are some  of the more popular reality TV shows. If you look at them, they are the Beautiful People. On the outside. Once you get beneath the surface, the beauty is gone. They are not the Beautiful People that I knew or that I know now.  The Temptations had a hit record years ago called  ”Beauty’s Only Skin Deep”.  The ladies on the housewives and some of the other reality TV shows are examples of that song. They get rewarded for bad behavior while we are trying to teach our children appropriate behavior. Maybe they never heard the saying, “Pretty is as pretty does”.

So they are not the Beautiful People that I am talking about. I am talking about those of you who have taught me so much. Those of you who have lifted me up when I was down and shown understanding and support. Those of you who face daily challenges and struggles with your child and manage to keep on keeping on.  Timex watches had a slogan years ago,  ”Takes a licking and keep on ticking”.  You are the Beautiful People.

I want to make sure that I get some things said while I still can. I attended another funeral.  Chico Edwards, who sang with the Spinners back in the ’60s recently passed away. I have seen so many friends and family die that it reminds me that I still have Life and want to accomplish what I can while I can. Autism has pulled me out of my comfort zone and I am so old that I don’t know how much time (or energy) I have left to accomplish what I want to accomplish. I also have to keep on keeping on.

Until next time; May the Light of God surround you. May the Love of God enfold you.

Claudreen Jackson