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

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

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

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

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

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

I have seen the success stories of people with autism who did learn to talk, but PJ is not one of them. Sometimes I can tell what is on his mind because he looks worried or holds his ears in pain, but for the most part it has been a guessing game. He is very good at letting you know what he does NOT want (usually after you have made the mistake of pushing him to do or eat something he doesn’t want).

I’ve said that we are not a success story, but when I look back at his behavior when he was younger, I can see how much he has grown and how far we have come. He used to spend his days jumping, flapping his hands, squealing, walking on furniture and trying to climb the drapes. He was always breaking the drapery rod and drapes were always on the floor, along with whatever he had cleared off the tables so that he could walk on them.

When he was jumping and flapping and squealing, I could not stand watching him. I would take his arms and hold them to his side and stop him from jumping. Then I read “Sunrise” by Barry Kaufman, who said that we should “resonate” with our autistic person by mirroring their behavior. So I started jumping, squealing and flapping and asking PJ “Why are we doing this?” PJ did not like my autistic behavior any more than I liked his, so he would hold my hands to my side and stop me from jumping. He showed me what his thoughts were about this behavior and soon stopped it.

Barry Kaufman is another of my heroes. He expanded on the book “Sunrise” by creating the Option Institute in Massachusetts to train parents and therapists in his methods of working with people with autism. The training is far too expensive for most of us, so I never really considered it as one of my options, but I did use some of his techniques, such as mirroring.

I want to include two more poems by David Eastham, the apraxic, non-verbal autistic man who was on the lower end of the autism spectrum. His condition was similar to PJ’s so, I like to think that his thoughts are also PJ’s. David was the first person on the lower end  of the spectrum that I knew of who was able to share his thoughts.  David’s thoughts had a great impact on me.

Mothers

Good mothers like you / loving kind judge, you.  /  Mum could I love hope too.

Understand reason that I love you / I love you. /         You try  try / yes, you really do  Please love stay true /      Your ever old  David.

Teachers

They are among the angels / that a person knows.      There / you see I’ve been there  Touching early souls.

Teach a person kindness /  Your way is best by far /  Question your reasons / to help a kid become a star.

Until next time; May the Presence of God comfort you; May the Love of God enfold you.

Claudreen jackson

One of the dictionary definitions of hero is “renowned for exceptional courage and fortitude”.  If you are the parent of a child with autism, you might not be renowned, but you do possess exceptional courage and fortitude, or you are developing it.  Parents of children with autism and other disabilities were my first heroes. From them, I learned how to be an advocate for my child.

Thanks to parent training workshops, I also learned that we need to develop coping strategies. When our children were diagnosed in the ’70s and ’80s,  we were the first group of parents whose children were not placed in institutions.  We were adrift and had to figure things out on our own because the community supports that were supposed to help were nonexistent. I hope things are better now. I do know that there are more services for people with autism now.

I was a part of PET, (Parent Education and Training). One of the most important things that I learned from PET was that  we needed short term coping strategies for crisis situations and long term coping for day to day challenges. If you have a child with autism, you understand that you need both. PET was created by a parent to help other parents and I was honored to be a part of it. It was one of a few “Parents Helping Parents” organizations that were formed during the ’80s. Let me know if  Parents Helping Parents organizations still exist or if there is a need for them.

Many professionals were also unsung heroes. I would not have made it without help, guidance and information from teachers, therapists, doctors, etc. From them, I learned that my son was worth my time and effort. I learned that though he could not be “cured”,  he could improve his behaviors and  he was capable of learning some basic functions and how to follow directions.

There was a type of professional who looked at us parents as if we were the reason our child was having difficulties. They could make us feel incompetent and useless. Especially with autism, it was thought that the parent caused the disability. I felt very guilty to have done this to my son. I hope that autism moms today don’t have to go through that.

I want to include a couple of poems from David Eastham, another unsung hero. David was a non-verbal, autistic and apraxic young man who was using a communication board until he was given a mini-computer. He then started writing poems which were published in a booklet titled “Understand”, in 1985. He lived in ottawa, Canada and was one of the first non-verbal people with severe autism to communicate his thoughts. He has since passed away, but his words taught us that even people with severe autism have thoughts that they may not be able to express.

People

I like people, interesting people / I person too, you see / I’m personable, kind and loving / I’m young, too, unusual me.

In My Mind

I try to pretend I’m / normal as humanly possible / In my mind. / I try to go to teaching / In my mind. / Try my best / In my mind. /  Go for my license / In my mind.  Get married / In my mind. /                       Hope my dreams can come true.

Until next time; May peace and love surround you.

Claudreen Jackson

When I was mentally and physically exhausted from dealing with autism, I read a book called “Healing Gifts Of The Spirit” by Agnes Sanford. She said that inside us is a little “pilot light” that never goes out. When we are depressed or ill or tired, we may feel that we have no light, but our pilot light is capable of growing into a flame again. This is echoed in the words of one of the Spinners’ songs, “A tiny spark will remain / and sparks turn into flame / and love will burn once again”.  These are words from “I’ll Be Around”.  Pervis believed in these words during the years that we were separated and he turned out to be right.

Another hero that helped me is Dr.  Wayne Dyer. In “Your Erroneous Zones”, Dr. Dyer said that you can control your feelings because you can change your thoughts about your feelings.  You can take charge of yourself through your thoughts and actions. I could see that PJ couldn’t control his feelings and actions, so one of us had to. I said that I had to adjust to him because he couldn’t adjust to me, but he has adjusted far better than I would have predicted. I don’t know if he has changed his feelings, but he has changed his actions.

In her book, “Lessons In Living”,  Susan Taylor said that we are God’s workers in the field and we have to be careful what we send out into the Universe because what we send out is what we get back. She said that “the challenges and obstacles you encounter in life are the lessons that help you discover your inner resources of love, faith and strength.” That without life’s challenges, we might not ever discover our resourcefulness. (If I had to choose a challenge in life, it would not have been autism, but I didn’t get to make the choice).

I could not talk about heroes without mentioning Temple Grandin. I read her books “Emergence, Labeled Autism” and “Thinking In Pictures”. I have also attended her workshops and talked to her when she comes to Michigan. What an inspiration she is! Temple helped me to see things from PJ’s perspective. Because of her explaining her hypersensitive hearing, I understood why PJ always kept his hands over his ears. Temple said that she wears ear plugs, but they didn’t work with PJ so he wears headphones. She also helped me to understand why PJ liked to get under the mattress. I hope you have seen her movie, “Temple Grandin”.   I have seen her since the movie came out and she is very pleased with it.

Because of my heroes, I decided to have my say about autism. One of my heroes said that “if there is something you genuinely need to say, there is someone who genuinely needs to hear it”.  They said to ask yourself the question, “If not now-then when? If not me-then who?”  After 36 years of living with a son handicapped by autism, I had much on my mind that I wanted to say. There are some things that you want said  and you find out that you have to say them yourself. “If it is to be, it is up to me.”

Until next time; May the Love of God enfold you; May the Power of God protect you.

Claudreen Jackson

Anyhow, I wanted to mention some of my heroes. I mentioned some of  them in “Inspired By Autism” but  their words bear repeating.

In his book, “The Prophet”, Kahlil Gibran wrote something that has comforted me greatly when dealing with PJ. “Your children are not your children. They are the sons and daughters of life’s longing for itself. They come through you, but not from you. You can give them your love, but not your thoughts.” Reading that quote helped me to quit apologizing for PJ’s existence. I gave him birth, but God gave him life. He is entitled to his little space on the planet just like the rest of us.

Dr. Norman Vincent Peale also helped me. In the “Power Of Positive Thinking”, Dr. Peale said that you can change your life by changing your attitude. He said that the facts are not as important as your attitude about the facts. You can’t change what happens to you, but you can change how you feel about what happens to you. Once your perception of a situation changes, the situation itself changes. In his little booklet, “Thought Conditioners”, he gives you specific scriptures and techniques to teach you how to change your attitude. Dr Peale said that God created you and He can constantly and automatically re-create you. He helped me to change my attitude about autism.

In her book, “Return to Love”, Marianne Williamson tells us to forgive those who hurt us. Forgiveness is just as healing for the forgiver as for the one who needs to be forgiven. That book was the catalyst for me forgiving my husband after years of nursing my hurts. I felt a load lift that I didn’t even know I was carrying. We eventually ended up getting back together. God is still working Miracles in the world!

In his book, “The Greatest Miracle In The World”, Og Mandino says of love, “Love is a gift on which no return is demanded. To love for fulfillment, satisfaction or pride is no love. If love is not returned, it will still flow back to you and soften and purify your heart.” He says that we are capable of so much more than we give ourselves credit for. I did not hope to get love back from PJ, but he did learn to return love.

I constantly mention Og Mandino when I am speaking. His books have had a great impact on me. Imagine my surprise when I was reading one of his books and he mentioned meeting me. What an honor! The book is “Secrets of Success and Happiness” and is his journal entries that were published. He is no longer living, but he managed to excite me from heaven after eighteen years.

I hope you have some Heroes in your life. We sure need them. I hope you have someone to give you a spoonful of comfort. I hope you can manage to share a spoonful of comfort with someone who needs it. A spoonful is the bare minimum of sustenance that we can give and you don’t have to write a book or form a foundation to give it.

Until next time; May the Love of God enfold you; May the Power of God protect you.

Claudreen Jackson