A Spoonful Of Comfort

The background music of my life has been songs by the Spinners for almost 50 years. The Spinners are still traveling and performing to rave reviews. They are finally going to be inducted into the Rock And Roll Hall Of Fame in April.  The titles of their songs can be used to sum up my relationship with Pervis. People familiar with Spinner music will recognize the titles. For the rest of you, the titles are in quotes.

When Pervis and  I first got together the song was “Woman Is Man’s Best Friend”, which was written by Pervis. He did a lot of writing and sometimes we wrote together.   Soon, our  song changed to “Could It Be I’m Falling In Love?”  As time went on, it was  “Then Came You” and  we realized that “Cupid” had struck again.

Pervis and I decided to get married because we had  a “One Of A Kind Love Affair”.  We knew that because of our  “Mighty Love” that we would always be together.  Or so we thought, but Pervis’ song changed to “Games People Play” and eventually our song became “It’s A Shame” because the marriage was over, or so I thought.  My song was now “Don’t Let The Green Grass Fool You”.

During the years that we were separated, Pervis’ song to me was “I’ll Be Around”, and he lived up to that promise. The words to the song were, “Whenever you call me, I’ll be there; whenever you want  me, I’ll be there; whenever you need me, I’ll be there;  I”ll be around”.  When I would try to thank Pervis for always being there for me and PJ, his reply was “I’m Working My Way Back To You”.

I didn’t believe it was going to happen, but Pervis always said we would get back together. When we finally did get back together again, the song was “I’m Coming Home” and “Now  That You’re Mine Again”.

Of course, PJ was oblivious to all of this. He is not aware of his father’s accomplishments. In fact, when we attended Spinners’ concerts, Pervis would always seat us right down front where the music was extremely loud. Certain notes would hurt PJ’s ears and he would scream,  jump and hold his ears and be very disruptive, so we always had to move to the very back so as not to disturb others. There was nothing “background” about PJ. He always got attrention and still does.

Until next time; One of Pervis’ favorite quotes,”Keep a song in your heart”.

Claudreen Jackson

Like a ship that’s tossed and driven / and battered by an angry sea / when the storms of life are raging / and the fury falls on me,/ I wonder just what I have done / that makes my race so hard to run./ Then I say to my soul, “don’t worry / the Lord will make a way somehow”.

The Lord did make a way. This is something else that I didn’t write, but these words  have given me comfort down through the years. These are the words from a gospel song that I often sang to myself.  I know that you are often going through storms if you are the parent of a child with autism. There are many storms in life and autism is just one of our storms. Even when it is calm, you don’t know when the next storm will appear.

It is a shame that along with other storms (financial, emotional, romantic, etc.), we still have our autism storm. We get all the other storms, the same as everyone else. There were many times when I did not think I would survive. I have a picture of a ship on my wall with the saying,

“Tis not the gale, but the set of the sail / that determines the way we go”.

I read it when I am going through an autism storm.  The storms are few and far between now, but I remember the days. You will survive your storms the same way that I did. PJ is so much easier to live with now that he is in his 30s.

Autism was the first storm in my life that I could not escape from. I was good at leaving an undesirable situation, but now I felt trapped. I had to learn patience and perseverance and it was not easy, but it has made a better, healthier person of me. I used to say that PJ was my burden. Then he became my challenge. Now, he is my blessing. I say that he is a blessing because I have grown because of him. I’d thought that I was “grown” when he came along, but I had no idea how much growing I would have to do.  I read  somewhere that “God might not remove the irritation, but He will help you to grow past it. That’s how pearls are formed”.

I am in better shape at age 70+  than I was at age 50. I was contacted by Wayne State University to be a part of a research study on senior citizens. The study will take five years, and I had to pass the tests they gave me.  You have to be over 70 and in good physical and mental health to be part of the study. I believe that if I had not endured autism all these years that I would not be as healthy as I am.

From this end of the autism spectrum, I can see that the Lord did make a way. It was not the way that I would have chosen, but we have to play the cards that we are dealt. I hope it doesn’t take you as long  to grow up as it took me.  Since “Inspired By Autism” came out,  I have been talking to mothers of younger children with autism. I see that todays’ autism moms are strong and smart. You all are doing so much better than I was. Don’t forget what Heroes you really are.

Until next time; May you have comfort, support and love in your life.

Claudreen Jackson

The fifth annual Walk Now For Autism Speaks event was held yesterday, Oct. 10 at the Palace of Auburn Hills. Many sports and entertainment events are held at the Palace, a big  arena which is  home to the NBA Detroit Pistons, but today they were hosting us. I felt compelled to walk because for 30 years, there has been nothing like this for autism. PJ and I, along with the PJ Foundation Team and many other teams walked for autism awareness, research and information to promote understanding.

We left home  about 8:am and rain was pouring down. Thank goodness my daughter, Stephanie was driving. Stephanie and my other daughter, Cindy were there to help me, as they have done throughout the years in my autism odyssey with PJ.  I was wondering if we would be able to complete the walk if the rain did not stop.  The instructions were that we would walk, rain or shine, but I wasn’t sure how that would work out if the rain did not stop.

By the time we got to the Palace, the rain was slowing down, so I became more hopeful and grateful. Our Honorary Walk Chairperson was Jim Madaus, our First Forecast Weatherman on WWJ TV.  Mr Madaus has been there every year and is the only TV personality to consistently support the walk. He, too, was concerned about the weather because it was raining as he was driving in, also. I got a chance to speak with  him and thank him for his support and for getting the rain to stop.

I was part of a community resource fair with information about services and support to people with autism. We were in a row of individual tents and I was able to promote and sell my book and to share information about the PJ Foundation.  There was nothing like that all in one place 30 years ago. There were not enough people with autism or enough people with power to put on such an event. It took Suzanne Wright to form Autism Speaks to get the ball rolling.

There were family activities and plenty of food.  The Pump it Up Company had brightly colored inflatable slides and other inflatable  activities for the children.  We had characters in costume who circulated through the crowd,  including a  big giraffe (who PJ liked) a blue smurf and a green frog. The beautiful, gold, Detroit Piston Championship Trophies were on display on a table inside the Palace. That is the closest I have been to a championship trophy. I was truly impressed.

I was also impressed to meet Rick Mahorn, one of the championship winning Pistons when they were known as the “bad boys”.  He was there to lend his support and to inform us of  future plans for  people with autism. PJ is 6’2″ and weighs 200 pounds and Mahorn made him look small. Of course we took a picture. (If I were more computer literate, I would share it with you).

The event seemed to be a success. They said that attendance last year was 1,500  and they were hoping for 2,000 this year. I don’t know if the rain kept some people away, but it looked to me as if there were as many people this year as last. The weather turned out to be great by 11:am when the walk started and we needed no coats or hats. The walk route around the Palace was dry and those of us with and without autism walked together.

Imagine, 2,000 of us walking together for a common cause. How different it is from the isolation that I felt for 20 years.   I am thankful that at my age, I can still be a part of events like this. I know that one day, I will have to go back to “Sittin” On The Sidelines”, but I will have documented my thoughts and feelings about autism. For now, I can’t sit and do nothing about autism. One of the things that I can do is to help those who are trying to help us.

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

Claudreen Jackson

Sorry I haven’t posted this week, but I was unable to access my blog due to a computer glitch. I am not the most computer literate person, but after a few adjustments, I am back in business. When it comes to technology, I am easily thrown.

Since “Inspired By Autism” was released , I have been trying to find out what is available for adults with disabilities in the area of camps, respite and group homes. I have discovered a wonderful couple who provide group homes in the city of Detroit. They are Reverend Germany Bennett and his wife Kimberly Bennett who own a number of group homes.

The Bennetts treated the group home residents and  residents of the neighborhood to a picnic on Saturday, August 27.  PJ, Stephanie (his sister) and I attended the picnic and we all had  a great time. PJ is not the most sociable person so I am always cautious when we are in a social atmosphere but he enjoyed the day.

The picnic was held in a big back yard  that adjoins two group homes.  There was a big red and white striped tent, a huge banner proclaiming the event, and bright balloons. You could not miss the fact that something was going on. There were all kinds of people there, physically disabled, mentally disabled, not disabled, not yet disabled, young and old. We were all together having fun and you did not know who was who.

There was  a DJ (who played some Spinner music) which really got us to dancing. There was a live band who entertained us. There were some really good singers (Stephanie got a chance to sing also). There was a train to take people on  train rides.  There was a big trampoline that children were jumping on.

I haven’t mentioned the food which was delicious. We had burgers and hot dogs, but we also had macaroni, bar-b-cued ribs, pasta salad and green beans. There was more, but  I could not try everything. PJ was only interested in hot dogs and macaroni. We had ice cream bars for dessert.

The evening ended with Rev. Bennett singing (he sounded great) and blessing us with a prayer. I hope that there are other events like this for our people, but this is the first one that I attended that PJ and I both enjoyed and I was able to relax.

Rev. Bennett  and Kimberly Bennett were a revelation to me. You know, it’s not always what you do, it’s the way that you do it and the Bennetts  express the kind of love and support that we want our children to experience.  I am comforted just knowing that there are people like them looking out for our children.

The PJ Foundation guiding scripture is Matthew 25:40,  “As you have done it unto the least of my brethren, ye have done it unto me.” The Bennetts exemplify that scripture and what a blessing they are to the world.

I hope to see you at the Autism Speaks Walk at the Palace of Auburn Hills on Saturday, Sept 10. If you want to walk, you can walk with the PJ Foundation Team. You can find us at the “Inspired By Autism ” table.

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

Claudreen Jackson

I love to write poetry, but today I am including a poem that I did not write. This poem was given to me by one of PJ’s teachers years ago. It has given me comfort down through the years and I have read it many times. This poem is for any parent who is faced with the challenge of raising a child with a disability. I want you to know what Heroes you really are.

I hope that we can support and encourage each other. How can parents of  “typical” children know what we go through? About all our sacrifices, heartbreaks and frustrations? All parents experience this, but we are constantly pushed beyond our breaking point when our child has a disability.  We are pushed beyond our breaking point, but we don’t break.  We get stronger, more compassionate, more understanding.

I am also the parent of “typical” children and grandchildren, so I know the difference. When PJ came along, I had the mind set of ;  you  raise your child; they go away to college or get a job, get married and live their own life, have children of their own, etc.  It had never occurred to me that there was anything different.

This poem is included in “Inspired By Autism”. When I wrote the book, I had the support and encouragement of my husband, but he did not live to see the final product. I greatly miss having his support, encouragement and help. Even during the years that we were separated, he was always there for PJ and me.  I pray that all of you have the support you need. I wrote “Inspired By Autism” to offer comfort and support by including things that comforted and supported me; things that I still need. We started the Pervis Jackson Jr Autism Foundation to offer physical and financial support to families that needed it. Pervis was the foundation for the Foundation as he was for PJ and me.

I hope this poem gives you the comfort that it gave me. The writer is anonymous but the words are not.

Heaven’s Very Special Child

A meeting was held quite far from Earth. / It’s time for another birth, / said the angels to the Lord above. / This special child will need much love.

His progress may seem very slow. / Accomplishments he may not show. / And he’ll require some extra care / from the folks he meets down there.

He may not run, laugh or play. / His thoughts may seem quite far away. / In many ways he won’t adapt / and some may say he’s handicapped.

So, let’s be careful where he’s sent. / We want his life to be content. / Please, Lord find the parents who / will do a special job for you.

They may not realize right away / the leading role they’re asked to play / But with this child sent from above / comes stronger faith and richer love.

And soon, they’ll know the privilege given / of caring for this gift from Heaven. / Their precious charge, so meek and mild / is Heaven’s very special child.

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

Claudreen Jackson

The southeast Michigan Walk Now for Autism Speaks annual walk will be held on Saturday, September 10 at the Palace of Auburn Hills. The PJ Foundation Team will be walking and I will have a table with information about the foundation and copies of “Inspired By Autism” for sale. Our foundation has a personal fund raising page (which is getting very little use).  You can add videos and tell your story on your page, but I only know how to do the bare minimum. I did manage to post that the page was in memory of Pervis Jackson Sr.

This is our third year being involved in the walk. The last two years, the walk was in October and the weather was so cold that we had to wear coats over our team shirts. We hope to have better weather this year. It took so long to get a walk for autism that I feel compelled to walk.  Thanks to Suzanne Wright for founding Autism Speaks.  She had the connections, power and clout to accomplish great things in a short amount of time.

Autism Speaks literature describes the walk as “a fun filled family friendly event laced with valuable resources, information and inspiration”. I agree. There are treats and activities for the children, music and food.   There is even a quiet tent for children who may have sensory overload. Walks are held in 80 different locations in the United States and Canada. We consist of individuals on the autism spectrum, their families and friends, health care providers and specialists. We  are all people who know about the devastating effect autism has on a family.

One of the Autism Speaks blogs invites people to tell why they walk for autism. I walk for autism because there was no such walk in the 70s, 80s, and 90s. Autism was so rare that it was classified as an “orphan disability”, which meant that there was very little research and awareness because the incidence was so low. I could never have predicted that the diagnosis would increase so greatly. In fact, I predicted just the opposite.  We have made so many advances in medical science and technology that I thought autism would decrease instead of increase. I  also thought that I had retired from autism advocacy and awareness activities, but I feel compelled to help  do what I can when I can. It is never enough, though,  because we can’t solve the problem.

Another event that the PJ Foundation has been involved in is the annual “Living With Autism” conference sponsored by Henry Ford Health System and Metro Parent Magazine. We have been involved for the past two years.  We have also been involved in a Resource Fair held by the Autism Society of Michigan. When PJ was younger, there were not enough services to provide information about to give resource fairs. I have been trying to see what has changed in 35 years. That is one of the changes. More people with autism means more services.

I hope to see some of you at the Autism Speaks walk. Please stop by my table and say hello and pick up a gift for your child if you attend the walk.  If you want more info about the walk , you can contact the Autism Speaks walk staff at michigan@autismspeaks.org.

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

Claudreen Jackson

“The Power Of Positive Thinking” is one of my all time favorite books. It was written by Dr. Norman Vincent Peale, one of my heroes. Dr Peale was an author, a pastor and the founder of Guideposts Magazine and other publications.  I read the book before PJ was born and loved it. After PJ came along, I said, “Dr Peale never had to deal with a child handicapped by autism, so it will be impossible for me to remain positive in this situation”,  but I read the book again. I also read his publication “Thought Conditioners” over and over. I still do.

Dr. Peale doesn’t know what I’m going through, I would tell myself. You can’t always be positive, but I would try.  I was often negative which was so much easier because it was how I really felt.  I did learn that when I was negative, I was tired and weary and weak and could barely make it through the day.

I learned that on my positive days, not only did I feel better, but PJ did, too. The more Positive Energy that I expressed, the more Positive Energy  he expressed. If I could manage to squeeze out a smile, he was more pleasant. If I could manage to remain calm, he became more calm. So I learned to “fake it until I could make it”.

I had to learn to look at his behavior objectively. He was often aggressive, impulsive and inappropriate, but there was no malicious intent. Why was he acting that way? One day, he was stretched out on the floor screaming and hitting his fists and head on the floor. I could not stand this. I was leaning against the wall, crying and hitting my fists against the wall. It dawned on me that I was doing the same thing that he was doing, only I was standing up. Why was I acting this way? Because I was frustrated,  upset  and overwhelmed. Was he?

I saw that we were feeding into each others’ behavior. I removed myself and went into another room. PJ got up and followed me. This became our pattern. If he was doing something that I could not stand,  I would walk away and he would  stop what he was doing and follow me.  This was not what I had expected to happen, but it worked. I wrote this poem to remind me to be positive.

Positive Energy

How would it be if we could see positive energy? / The energy that is the key to set us free / And keep us young and well and strong / and help us bloom our whole life long?

Would it be bright like a light / to help us make it through the night? / Would it make sunshine in our soul / and keep us warm and help us grow?

Would it sparkle and shine like silver and gold? / Would it reveal a lie we’ve been told?Would it help us not to guess / if we should say no or yes. / Could we always do our best?

Would it lift us up above the fray? / Give us the strength to find our way? / Help us have a better day? / Would it soothe our spirit and dry our tears? / And help us chase away our fears?

I know you may be tired of me / speaking of this energy. / But wouldn’t it be nice to see?

Until next time; May the Light of God surround you; May the Power of God protect you.

Claudreen Jackson

Many studies have been done with people who are on their deathbed about what they would go back and do differently and what their regrets were. Most did not regret what they had done, but what they wished they had done, but now it was too late.  When I read this, I knew that my biggest deathbed regret would be not speaking my mind about autism when I had the chance.   I have no answers, but after having lived with a son who is handicapped by autism for 36 years,  there is much that I wanted to say.

I would not have had the courage to speak my mind if it were not for the professionals who pulled me off the sidelines and asked me for my opinions. Previously, I mentioned some of  the professionals that I came into contact with who were instrumental in getting me to say what was on my mind. They really listened and seemed to want to hear what I had to say.  I even had teachers who asked me to speak for them because they weren’t being listened to, but they said a parent would be listened to.

The teachers at Burger Developmental Learning Program for students with autism gave me their home phone numbers. What a gift that was! So much so, that years later when I started teaching students with learning disabilities, I gave my home phone number to the parents of my students. They never abused the privilege. I greatly appreciated the fact that I  could call my son’s teachers with my concerns, so I wanted my parents to feel the same freedom to call me with any concern they had. Just knowing that the teacher cared enough to give their home numbers gave  me the comfort and security I needed to not want to bother them after school hours.

These teachers also arranged for me to do a cable television show about autism. The show “My Piece of The Puzzle” gave me an outlet for my concerns and a chance to say what I felt needed to be said about autism.  The show was aired in 1987 and 1988 and won two awards. In honor of the professionals who refused to allow me to remain on the sidelines in despair about autism, I wrote this poem.  I found that speaking  out in a positive way and trying to help increase autism awareness was a stress management technique in itself.

Sittin’ On The Sidelines

Sittin’ on the sidelines,  looking at the ball / wishing I had thrown it, but afraid that I would fall.

Sittin’ on the sidelines, watching the parade / wishing I was marching, but I was so afraid.

Sittin’ on the sidelines, watching life go by / wondering if all that I could do /  was sit and watch and cry. / Don’t know if I will succeed / but I know I have to try.

Sittin’ on the sidelines, wanting to be heard. / Don’t know if anyone’s listening / but I have to say my words.

I am tired of sittin’ on the sidelines / and I’m gonna make a change. / No more sittin’ on the sidelines / ‘Cause I’m gettin’ in the game / Don’t know if I’ll win or lose / but I’m playing just the same.

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

Claudreen Jackson

I have often said that the educators and therapists who worked with PJ were not able to accomplish much in helping him recover from autism. This is true, but they accomplished a great deal with me. I want to say thank you to all the professionals who helped me to grow.  I’d thought I was “grown” before PJ came along, but I sure had a lot to learn. I am still growing. They were not able t0  “cure” PJ,  but they helped  to “cure” me. I hope that educators and therapists working with children with autism realize what an impact they can have, not only on the child, but on the parents.

There was  his first teacher.  He was in a classroom for children with emotional impairments. The teacher never raised her voice and always seemed to be calm.  I asked her how she could always be so calm and she told me that the more calm she was, the more calm her students would be. She said that she would only raise her voice if there was danger and her students would know the difference. This made a lot of sense to me, so I quit raising my voice at home with PJ.  We both became more calm.

A social worker from Detroit Public Schools made a home visit to see how PJ and I were doing when he was about six years old. I told her that I was sick and tired of being sick and tired  and wanted to quit crying about autism and to do something. She recommended me to Dr. Ingrid Draper, the director of Special Education, to be a member of her Parents Advisory Committee. Dr. Draper really wanted to know what parents wanted to see done. She actually listened to us and took our advice. I was amazed that we were  being responded to.  It was a revelation!

Another time, one of PJ’s teachers and a social worker made a home visit on their own time.  Some teachers even bought him gifts. I was learning that people really cared and that he was worth our time and effort. Even the cab drivers who picked up our children  seemed to care about them. How could  I do any less than the people who were working with him?

I was appointed to the board of directors of the Michigan Society for Autistic Citizens (MSAC), now Autism Society of Michigan (ASM). Our executive director at the time, Bill Walsh, started sending me out to speak about autism awareness. I was very intimidated because I was speaking to doctors, executive directors and other professionals.  Bill’s only advice was , “Tell them about your experiences with your son and what you would like to see done”.  Even though I was intimidated, I knew that I needed to speak for my son and others like him. There were things that I wanted said, so I had to get out and say them myself.

I became a member of the United Foundation Speakers Bureau, the agency that supported MSAC, along with many other charities. I wanted to be able to thank the people who gave and to help explain why their support was  so necessary.  I was learning that there were so many people who needed help, but there were also many people who wanted to help.

I was appointed by both Governors, Blanchard and Engler to their advisory council, the Michigan State Planning Council for Developmental Disabilities, (DD Council). The council was composed of people with disabilities, parents of people with disabilities and agencies that provided services to people with disabilities. We were to advise the governor on matters concerning people with disabilities in the state of Michigan. I was still intimidated, but was pushed along by autism. I was honored to be part of such an important advisory council.

I kept meeting professionals who seemed to care about people with disabilities. They each had a part in helping to shape me.  I wanted to help them to help us. I hope that this high level of professionalism and  caring is still going on.

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

Claudreen Jackson

I mentioned  that once I  learned how to accept PJ’s interests that living with him became easier. I also mentioned learning about unconditional love from PJ. From him, I’ve learned about purity in a person. PJ does not lie, cheat or steal. (He does sneak, though). He throws away food that he doesn’t want to eat when I am not looking. He also pours juice that he doesn’t like down the drain.

Something else that I’ve learned from PJ is how to tune things out.  Many times, his jumping and flapping his hands were an attempt to tune out whatever was going on around him. It used to be extremely hard for me to tune anything out, but I have learned that everything and everyone is not worth my full attention. It is especially helpful to tune out the rude, hurtful stares and comments that we used to get when we were in public. I hope that parents have it better now when they are in public with their children. Now that there are more children with autism, I hope there are less stares and comments.

PJ lives in the moment. He is not depressed  about the past or worried about the future. I can’t always live in the moment like he does, but I do try to relax and enjoy the moment when I can. I also try to plan some pleasant moments because they are hard to come by when you live with a person handicapped by autism. Sometimes, you can’t enjoy a pleasant moment because you are too stressed out or worried about what will happen next. I still struggle with that, but I am learning because living in the present can be a survival strategy and a stress management technique.

I’ve learned that we are all one accident or illness away from a disability. In fact a developmental disability is one that a person is born with as opposed to one that happened because of accident or illness. This fact helps me to be more careful and to take better care of myself because I know that accidents can happen.

I’ve learned to quit apologizing for PJ’s existence. I gave him birth, but God gave him life, so he is entitled to his little space on the planet just like the rest of us. In his book, The Prophet, Kahlil Gibran says,”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 you cannot give them your thoughts”.   This is especially important for us to remember when we have a child with autism or any other disability.

I’d thought I was “grown” when PJ came along. Because of autism, I’ve learned that we have to continue to grow. I read somewhere that God might not remove the irritation, but He’ll help you grow so that it doesn’t bother you as much. That’s how pearls are formed.

Something to consider, “All our failures, disappointments, heartaches and defeats were the soil in which we were planted in order to ripen. (I am Ripe!) Our tears were the rainfall. Our smiles were the sunshine. The ____ we have taken from others is our fertilizer”.  I don’t know where I read that quote, but it seems appropriate.

Until next time; May God give you the strength to carry on.

Claudreen jackson