A Spoonful Of Comfort

I spent so much time trying to teach PJ (usually without success) that it finally dawned on me what he was teaching me. He may have taught me more than I have taught him. What was important to me was not what was important to him ( reading, writing, talking). What was important to him was what he was interested in learning (cooking, art, skating). When we followed his interests, we had more success.

Cooking is not something I would have tried to teach him, but he watched me in the kitchen enough to learn how to cook his own fries, sausage, hot dogs, corn on the cob, etc Of course, he didn’t ask for permission, or he would never have been allowed to use the stove. One day, he just started cooking on  his own. He had a few mishaps in the beginning by overcooking things, but he kept at it and now is mostly independent when it comes to cooking what he likes. He is not much interested in cooking or eating anything green, unfortunately, but I have learned to accept his interest in cooking and to let him do things his way. This is one of the things that has made our life easier.

Another thing I have learned from PJ is about unconditional love. He loves me no matter what I am wearing, how my hair looks, whether or not I’ve had a shower, whether or not I cook or clean house. He holds my arms, looks me in the eyes and gives me such a look of love that it always surprises me. From a person who would give no eye contact to him looking  me in the eyes with a big smile lets me know how far we have come.

I had to learn to love him unconditionally. I admit that I didn’t always feel love for him, but I tried not to let him know it. We can’t help our feelings, we can only help what we do about our feelings. I thought that PJ would never love me back, but I kept trying to love him anyhow.  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 flow back to you and soften and purify your heart”.  I read this over and over and it always uplifted me. What a beautiful statement about love!

In his book, “The Prophet”, Kahlil Gibran says that, “as love is for your growth, it is also for your pruning”.  In her book, “In the Spirit”,  Susan Taylor says that the more unlovable a person is being, the more in need of love he or she is. These are some of the authors who helped me to accept my situation and learn to love my son. I also mention them  as some of my heroes  in “Inspired By Autism”.

I read  somewhere that people can feel it when love is being sent in their direction. One day when I said “I love you” to PJ, his  bowed down head lifted up, his eyes closed  and a look of peace replaced the look of misery on his face. I could actually see him receive the love. Another learning experience for me. I’ve heard that when you don’t get what you want, you get a learning experience. What a learning experience autism has been for me!

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

Claudreen Jackson

I hope you can find a way to get some “Me Time”.  If you have a child with autism, you need this time to relax and recharge your batteries. When PJ was younger and I was able go get some time without him, I did not relax and recharge.  I was worried and fearful of all the things that could go wrong when he was not with me.

I have talked to a couple of mothers who have other children who reminded me that even when they get respite for their child with autism, they still have to take care of the others, so they don’t actually get “me time”.  That’s why the parents need to get away from home for a few days so they can focus only on themselves. I know how hard that is, but the PJ Foundation wants to help if we can. One of our solutions is camp. Camp is good for the parent and for the child.

PJ is now 36. During these years, I’ ve had years when I tried to do everything by myself because of my fear and anxiety. I became so overwhelmed by autism, that five minutes short of me becoming autistic myself, I realized that I had to get respite. I don’t know how much respite is available now, but I hope you can schedule a few days of respite.

I finally realized something about PJ.  He needs “me time” too! Sometimes he would be downstairs and I would be upstairs. I’d decide to go downstairs with him. Then he would go upstairs. If I go back upstairs, he will go downstairs.   This has happened so much that I have finally accepted it. So now, we each have our “me time” when we need it, together, separately.

This is a poem that I wrote when I was yearning for “me time”. It was inspired by another mother of a child with a disability.  I hope you can relate to it. It is also included in “Inspired By Autism”.

If I Only Had A Day

If I only had a day to wash my cares away / To soak in a tub, to get a back rub / To find the me that I used to be / Do I still have an identity?

If I had a day without this child / Would I feel that I could smile? / Maybe for a little while / I could go to visit friends / and reacquaint myself with them / and I could feel like me again.

Could I go to see a show? / Relax and laugh and let troubles go? / Could I go to dinner to see how it feels / to really sit and enjoy a meal?

If I only had a day, would I find a way / to catch up on my chores / to sweep all my floors? To make my house all neat and clean / so I could have some company?

If I only had a day, would I have a chance to say / all the things that are on my mind / To feel like I have free time / to try on my clothes / to polish my toes ? / To exhale at last/ To complete a a big task.

I’m tired of cryin’ / I want to start tryin’ / to put things back together again./ But I need a day to find my way / It’s coming, but I don’t know when.

This mothering that never ends. / I’m smothering in all the trends / I really try to do my best / but don’t know if I pass the test / in trying to manage all my stress.

So if I only had a day / Could I find the proper way? Some time to work / Some time to play / Or would I just go to bed and stay?

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

Claudreen Jackson

We all know that prolonged stress is not good for the body. Stress affects us at the cellular level and can cause aging, accidents or illness.  Short bursts of stress don’t harm the body, but  extensive, prolonged stress is not good for us.

They have tests to measure stress, but I know that you know that you are under stress if you are the parent of a child handicapped by autism. You don’t need a test to measure it. The strain and pressure of caring for a child with autism is an extremely stressful situation that many people cannot relate to. How can they understand the stress we are under if they don’t have our experiences and challenges?

There were so many concerns about PJ’s future that Pervis Sr and I decided that we would be his future. When I decided that I was in this for the long haul, I took stress management classes because I thought that I could not handle the stress. I learned that if we can’t get rid of stress in our life, we have to change the way that we react to stress.

We have to do more deep breathing because stress robs our body of nitrous oxide and deep breathing taps into this and helps increase it.  Deep breathing and deep relaxation (tensing and relaxing ) of our body parts help decrease the effects of stress on our bodies. This is the bare minimum of what we can do to decrease the effects of stress.

We also need some form of exercise to develop and maintain our stamina. My exercise of choice is yoga. It has been very beneficial to me and is something that I don’t have to leave home or get a sitter to be able to do. I am not athletic at all, so yoga works for me. A more athletic person may choose something else, but some form of exercise is important. I took yoga classes during the 80s, but quit  during the years that I was teaching.  I started back doing yoga after I retired.

You may feel that you get enough exercise just taking care of your child, because they do keep us busy, but that is just more stress. Maybe there is an exercise that you might enjoy.  I don’t actually enjoy yoga, but I know it is good for me. I feel better and healthier when I do it on a consistent basis. (I admit, that is hard).

I hope that parents are doing something for stress management. I hope that you are able to get some “me time”.  Sometimes my “me time” came in the middle of the night. We spend so much time and energy on our children that we tend to forget to take care of ourselves. We also have to learn to pick our battles and not to waste our energy on unimportant things.

PJ has older sisters and an older brother, so I had sitters when I felt the need to make an escape from autism. I was able to get respite at least two weeks a year also. When my husband and I were separated, I tried to do everything by myself. That’s when I was really overcome by the stress of  autism.

They say  that you can’t help what happens to you. You can only help what you do about what happens to you. Try to remember to take care of yourself.

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

Claudreen Jackson

I’ve been trying to find out what methods and therapies  that were used 30 years ago  to treat people with autism were effective. I was extremely dismayed to find out that electrical shock therapy, a controversial therapy that I thought had been discontinued is still being used. One of the places where this therapy is still being  used  is at a residential treatment center in Massachusetts.

The May 25th episode of Nightline featured a story about the residential facility and the therapy. They interviewed the doctor who said that  electrical shock therapy  is the only solution for treating people with severe behavior disorders. I can’t believe that he still thinks that is the only solution.

In the 1980s, this same doctor was featured on a local morning talk show, Kelly and Company. I was then the president of the Wayne County Chapter of the Michigan Society for Autistic Citizens (now Autism Society of Michigan) and a member of the state board of directors. We decided to attend the taping of the show to make it known that parents disagreed with this treatment.  We were in the audience and made a point of voicing our disapproval of this kind of therapy.  30 years later and he is still at it!

The doctor said this is the only treatment that works to stop children who would hurt themselves or others. He said he knew that it was painful, but  that if it didn’t hurt, it wouldn’t be effective.

The show also interviewed a former patient of the facility who had been given the treatments. He told of  the  horror and the pain of the therapy.  The patient is strapped to a table, restrained and shocked. Sometimes it was multiple times, according to this patient. He said that he felt that permanent damage had been done to his brain because of these treatments. He stated that other children was experiencing these treatments and it seemed that no one cared which is why he was speaking up.

Michigan was one of the more progressive states that discontinued this therapy many years ago. Thank God! Some of us desperate parents who were told that this was effective might have felt that it was our only solution. I know that because of his behavior this treatment would have been used on  PJ if he were in this facility.

It gives me a spoonful of comfort to speak for someone who can’t speak for himself .  I know that without me, PJ would have been one of the outcasts of society. I know the desperation that parents felt 30 years ago. We would listen to anyone who claimed to have a solution to autism.

I am hoping that with the increase in the diagnosis that there is also an increase in compassion in the doctors  and other professionals who work with our children.

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

Claudreen Jackson

I’d assumed that anyone reading this blog already understood autism, but I have been asked to explain autism for those who are not familiar with the condition.

Autism is a puzzling disorder which is why the symbol is a puzzle. It used to be a child’s face in a puzzle, but now it is puzzle pieces. In 1987 and ’88, I hosted a cable TV show titled “My Piece Of The Puzzle.” I don’t know much more about the condition now than I did then.

Autism is a developmental disability. A developmental disability is one that a person is born instead of one resulting from accident or illness. It is a neurological disorder that affects the functioning of the brain. (In the 1970s when PJ was born, the condition was said to be caused by cold, refrigerator mothers). I felt so guilty.

Autism appears during the first three years when a seemingly typical child starts to regress.  Personality and behavior change during this time. Since PJ was so “normal” when he was born, I bought into the idea that I was somehow the cause.  I’m glad that they don’t burden mothers with that  theory anymore.

The condition affects the behavior, (sometimes becoming aggresive,  as PJ did),  social skills and ability to communicate. PJ still can’t talk, but he is independent enough that he doesn’t miss out on anything. He had speech therapy for two years, but did not really want to talk. He has a speech impediment and would have needed to want to talk bad enough to overcome the impediment. I could see after two months that it wasn’t working, but I did not want to give up.  They finally told me that it was a waste of their time and my money to continue. He is not as aggressive anymore and is far more pleasant and agreeable. He is still very unsocial and retreats to my bedroom if anyone comes to visit.

Autism affects all races, all social level and all ethnic groups. It is four times more prevalent in boys than in girls. When PJ was born in 1975, the diagnosis affected 1 in 10,000. Now the diagnosis affects 1 in 150. Why the increase? Another piece of the puzzle that needs to be solved. The fact that it affects more boys than girls hasn’t changed.

It is referred to as ASD or Autism Spectrum Disorder, because the condition ranges from low functioning people to extremely intelligent people. For the high functioning people, it is referred to as Aspergers. Some people with Aspergers become adults before they solve their piece of the puzzle about their behavior, lack of social skills or disinterest in popular trends.

Whenever I meet a person with Aspergers, I find them very interesting to talk to. I can question them and get some insight into why PJ has certain behaviors. I talked to a teen ager with Aspergers and asked him if he wanted to drive. He said that he didn’t want to drive because he did most things by ritual and driving was so unpredictable that he would not be able to ritualize it. I was very impressed at his intelligence and insight.

Autism is a disorder that baffles even the experts. I have 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. He, too, is a child of God.

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

Claudreen Jackson

I mentioned before that PJ and I were recently filmed for a documentary about living with autism. I don’t know when it will be finished or shown, but I do want to mention some documentaries that I have seen about autism that I really appreciated. When PJ was small and autism was unheard of, there was nothing like this for us to refer to. I mentioned these films in “Inspired By Autism”,  but this is for those who have not read the book.

The documentary “Autism, Oh The Possibilities” is full of good information about autism and the professionals who work with our people. They discussed ABA (Applied Behavior Analysis) which is a behavioral intervention program to work with people with autism who have problem behaviors such as PJ did. (It is too expensive for many of us, but greatly helpful to those who can afford it). It is one of the few interventions that has stood the test of time.

This show addressed the mercury in the vaccine situation by explaining that some children can excrete mercury and some can’t. They explained that there are things that can interfere with the excretion of mercury. Though I, too, am suspicious of the vaccines, I would never advocate stopping them, because that would cause an even bigger problem.

This movie gives tips on the diagnosis of autism, such as observing and making note of the person’s development; of their individual cognitive processing difficulties (do they understand what is said or done?); and of their relationship to others. It gives tips on how to relate to people with autism, such as following their lead, seeing what they are interested in and building on that interest. The film has so much more information than I can relate here, but it is well worth watching if you get a chance.

Another film that really interested me was “Autism, The Musical”.  It focused on the Miracle Project run by Elaine Hill  who led children with autism in writing, rehearsing and performing a musical. The show included interviews with people with autism and their parents so that we could get both perspectives.  The show explored the struggles that parents and children had to endure in order to create the musical and make it a success. I don’t know how they had the courage to undertake such a daunting task. I hope you get a chance to see it.

The movie “Rainman” starring Dustin Hoffman and Tom Cruise did a good job of depicting  an adult with autism. The movie, written by Ronald Bass won an Academy Award for best screenplay. They all really did their homework.

“Miracle Run”, a movie about a single mother of twins with autism did a good job of portraying the plight of  single parents who are raising children with autism.  “Family Pictures”, a movie starring Angelica Houston showed how autism affects the whole family and the conflicts that can result.

Of course, the movie “Temple Grandin”, starring Claire Dane is the latest movie about a person with autism. Temple has made a success of her life in spite of her obstacles. I saw Temple since the movie came out and she is very satisfied with the final product. Maybe you saw her at some of the Award shows that the movie was nominated  for. Temple is one of my Heroes.

Nothing like this was available when PJ was small, which only added to the sense of isolation that I felt. With the increase in the diagnosis, we need films such as these to help increase public awareness. From talking to parents, I am finding that public outings are still just as difficult as they were 30 years ago.

Until next time; May Peace and Love surround you.

Claudreen Jackson

No, I am not asking for help, but yes, I want to talk about help. I am a  person who does not like to ask for help. Three of the hardest words for me to say are , “I need help.” I am sure that all parents of children with disabilities hate to say those three little words. But we all need help. PJ will soon be 36 years old and I still need help. When he was born in 1975, I had reached a point in life where I thought I was through needing help. Boy, was I wrong.

Knowing that parents need help is the reason for starting the Pervis Jackson Jr. Autism Foundation. We want to help parents in need of help. So, now, here I am, a person who does not like to ask for help with a foundation that insures that I will be asking for help for a long time.  Autism has constantly pushed me out of my comfort zone.

But,  along the way, I have received a great Revelation!  I have discovered that some people want to help.  I have often found one of our scriptures  (Matthew 7:7) to be true. “Ask, and it shall be given unto you.”  Another scripture (James 4:2) says, “Ye have not because ye ask not.” Many times, when I have humbled myself  to ask for help, I have received it, but I still don’t like to ask.

If you know a parent struggling (it is a struggle) to raise a child with a disability, she (or he) probably needs help, even if they don’t ask for it. If you are one of the people who wants to help, I hope you will let them know. You don’t have to start a foundation to have “a spoonful of comfort.”  If you don’t know what else to do, why not pick up a copy of “Inspired By Autism?” It can be purchased on Amazon.com, at the Autism Collaborative Center at Eastern Michigan University (ACC-EMU), and at a few book stores. It will soon be available as an E-book.

Proceeds from the sales of “Inspired By Autism” are going into the Pervis Jackson Jr Autism Foundation (pjjraf.org). If you buy a book, not only will you be helping to give comfort to a parent, you will be helping  to support the foundation. (I know I said that I would not be asking for help). Sorry.  But I’ve gotten great feedback from parents who have read the book.

I want to do all that I can to help children with disabilities. You can help me to help them. I’ve heard so many sad stories down through the years that it is a blessing to say. “How can I help you?” instead of,  “How can you help me?”  I’ve had some blessings that many other parents haven’t had so I would like to pass them along. God blesses us so that we may bless others.

Blessings to all parents, whether your child has autism or not.

Until next time; May Peace and Love surround you.

Claudreen Jackson

I am very curious about what happened with some of the interventions that were used 30 years ago to help children with autism. Were they successful? Are they still being used? I did not get a chance to try them because of my son’s level of functioning and I would like to know what happened. If you have any answers for me, please leave a comment on this blog or e-mail me.

I’ve gotten an answer about what happened with facilitated communication. That was a process in which the person with autism communicated by typing. The autistic person did not type independently.  The person  with autism was aided by a person (facilitator) who supported  their arm over the keyboard. There was always a question about whether the facilitator was supporting the arm or guiding the arm. Was the autistic person actually answering or was the facilitator? If a different facilitator was used, would the answers change, as it sometimes did?

I tried to be PJ’s facilitator by supporting his arm while he typed. I found that he would rather type without me supporting his arm. He would type words or phrases that we put on flash cards, but I was never able to get him to type his own thoughts or feelings. He did not really have a desire to communicate and still doesn’t. He soon lost interest in typing as he did with other activities that I tried to interest him in.

The week of  June 12, the Detroit Free Press presented a week long story about facilitated communication gone wrong. According to the story, the process had been discredited over a decade ago and should not have still been used. It created a nightmare for the family involved and I have heard of other such outcomes. If you know of any times that it was proven successful, please let me know.

What happened with Auditory Integration Training (AIT)? This was a process by which headphones and individualized sounds were supposed to help adjust the brain waves of the person with autism.  It required a series of tests and treatments with the autistic person before it could be implemented.  I looked into it, but it would have required a couple of months away from home, not to mention the expense it would have entailed. Does anyone know of it being used successfully?  I did find that PJ likes headphones with music, sounds, or nothing at all. He constantly wears his headphones.

What happened with all the people on the lower end of the autism spectrum (such as my son) who were mainstreamed? Did it turn out to be successful? Where are the people now? What happened with the gluten free diets? Did it turn out to be a long term success? Are these people living independently in the community?

What happened with residential options for adults with autism? What kind of choices do parents have? From my experience, parents have to come up with their own solutions, which is why PJ is still living with me. When I was a member of advocacy committees back in the 80s, we tried to put some options in place that don’t seem to be available now.

What happened with respite? Have we lost some of our respite options? Do parents take advantage of this service? With the increase in the autism diagnosis, I hope that there is enough available. I’ve only survived autism because of getting respite when I needed a break.  Sometimes, just knowing that a break was coming gave me the energy to hold out until then.

I know I’ve asked a lot of questions. I hope some of you have answers for me. I would like to know what has changed in 30 years.   What interventions that I was not able to try proved to be a success?

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

Claudreen Jackson

This has been a busy week for me. I recently returned from a National Book Festival in Houston. There were too many books, too many authors and too many choices. It was so easy to get lost in the shuffle that I didn’t get to see other authors that I was interested in or to buy their books.  It was hard to generate much interest in autism, probably because the people most interested in autism were at home taking care of their children who are handicapped by autism. These parents don’t get out and about much. Though I didn’t accomplish all that I would have wanted to, it was an energizing and exciting event.

After I returned, PJ and I were interviewed for a documentary about living with autism. (You know which one of us did all the talking). Although PJ is very independent at home, (doing chores, fixing lunch, cooking his own fries, etc), I’ve not been able to get these activities on video when  we have been filmed.  He does not perform on cue. He cooks if he is hungry and fixes lunch in the evenings before bed. If we are ever filmed again, I may have to set up a situation to show him in action.

As it was, he reluctantly looked at pictures with me, said a few words and played the bongo a little. He spent most of the interview hiding out upstairs in my bedroom. Still, that is an improvement because he was calm and pleasant. There was a time when he would have been aggressive when asked to do something he doesn’t really want to do. He is better at doing what he wants to do when he wants to do it. As I said before, we have to savor our small successes. I will keep you posted on when the documentary will air.

I was also interviewed for the documentary  about the Spinners  on an episode of the TV show”Unsung”. It was shown on the  TV One Channel and it will be rerun.  I hope you get a chance to see it. The Spinners were gracious enough to allow me to participate to speak for Pervis. It was bittersweet, because I would  rather that Pervis have been here to speak for himself. I am honored and thankful that they wanted Pervis remembered. That tells you the kind of men they are. They are world class men, both onstage and off. They are some of my Heroes.

Pervis was always mentoring me and encouraging my writing. He did not live to see it or to accomplish some of his goals for people with autism, so I feel that it is my responsibility to speak for both of the Pervises while I still can.  Pervis is gone, but if I did not try to move forward with our plan, I would not have comfort myself. I have to at least put forth the effort. If you never try to accomplish a goal, then you will never know what the outcome could be.

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

Claudreen Jackson

I don’t know about a happy ending, but I do know that the impact of living with a son who is handicapped by autism has caused me to a be stronger, kinder, healthier person. I’d thought I could not endure all the sacrifices and challenges of living with PJ and did not plan to live with him this long, but I am feeling better at age 70 than I did at age 40 and 50.

We were so worried about his future that Pervis and I decided that we would be his future. Once we decided that we were in it for the long haul, I had to develop a system for how I was going to cope with his behavior. I took stress management classes that are still beneficial to me. One of the outcomes of these classes was learning how important it is to get respite.

I also had to develop Faith. Faith is hoping for a positive outcome in spite of all evidence to the contrary. If you already know the outcome, you don’t need Faith. I would rather have Faith for years and then be disappointed, than to be disappointed for years because I had no Faith.  My Faith was not in me, but in God.  God might not move the irritation, but He can help you grow past it. That’s how pearls are made. (I don’t know where I read that, but it is a spoonful of comfort to me).

I gave PJ birth, but God gave him life, so I learned to quit apologizing for his existence. He is entitled to his little space on the planet just like the rest of us. Is he worth any less because of his condition? Would I still love him if he did not recover from autism? God did not cure PJ,  but He cured me.

In his book, “The Prophet” Kahlil Gibran said, “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 can’t give them your thoughts.” This quote has always  been a spoonful of  comfort also.

I am closing with a poem that I wrote over 20 years ago when PJ was at his worse going through puberty.  It was first published in my book of poems, “Let There Be Light” in 1995. It is also included in “Inspired By Autism”.

Will There Be A Happy Ending?

Will there be a happy ending / when all of this is through?/ Or will I wish I’d given up / and found something else to do?

Will there be a happy ending?/ Will I laugh instead of cry?/ Turn lemons into lemonade / Can I make it if I try?

There springs the hope eternal / that things will turn out right. / Please don’t confuse me with the facts / ‘Cause then I’d lose the fight.

One day, I’ll say, “It’s worth it all / the troubles I have seen”.  / Or do I have the wrong perspective?/ Am I allowed to dream?

Will I find the pot of gold? / Does the rainbow follow rain?/ Or will I open up my eyes to see / optimism was in vain?

I know that “happy ever after” / only comes in fairy tales./ But I can’t shake the feeling / that all will turn out well.

So you may think that I’m a fool / but I must stop pretending / I can’t accept the doom and gloom / I’ll have my happy ending.

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

Claudreen Jackson