A Spoonful Of Comfort

Where is she? / The me / that I used to be / before my autism odyssey?

During my 35 years of living with a son handicapped by autism, I’ve walked (or crawled) a fine line between trying to balance his needs with my needs. Most of the time, my needs lost out. In the beginning, I was totally focused on autism and what I needed to do even though half the time I didn’t know what to do. I spent a lot of time paralyzed by fear.

For years, I was so oppressed by autism that I could hardly make it through the day. I was drowning in my misery and feeling sorry for myself until I noticed that PJ was drowning in  his own misery. He had no way of telling me that he was in pain and I found out that sometimes his outbursts and tantrums happened because he was in pain from ear infections.

I hope things have changed with the increase of the diagnosis, but when PJ was small, taking him anywhere in public was an exhausting ordeal. He looks so normal that when he did something inappropriate or made some of his loud vocalizations, people thought that I was a terrible mother. I know what they thought because they would tell me. People would flash me dirty looks and say rude things. ‘What kind of mother are you? Make your kid stop that? Why don’t you keep that boy at home?”

I did start keeping him at home. For three years, I did not take him anywhere because I was tired of public embarrassment and humiliation. I hope things have changed so that now parents don’t have these feelings when they take their autistic person anywhere in public.   During this time, I was not going anywhere by myself either  unless it was absolutely necessary.

I finally realized that I needed to try to have some kind of normalcy in our life and quit hiding out. I needed to take a break from autism. I was blessed that PJ had older sisters and an older brother who could stay with him when I made one of my getaways. They were my first support network. I pray that parents now have some kind of support when they need a break. Parents need “me time”.  That is why we formed the PJ Foundation, to offer support to parents in need. I pray that the foundation grows so that we can offer more  in the future than we can now.

PJ is much easier to live with now, or we could not still live together. I never expected to live with him this long. I still have to balance his needs with my needs, but it is much easier.  I always said that I would have to adjust to him because he could not adjust to me, but he has adjusted to me. We have both learned and grown. I found out that lost sleep, heartache and anxiety doesn’t kill you. They say that what doesn’t kill you makes you stronger.

Where is she?/ the me / that I used to be / before my autism odyssey?

Autism rocked my world / Changed me from a woman back to a girl / Thought I was grown / but now I know / that once again, I had to grow.

And keep on growing, / again and again. / When will it stop? / I don’t know when.

If God brings you to it / He’ll bring you through it. / But it seems I’m never through

So after all these many years / I still don’t know what to do.

So the me / that I used to be / is still trying to be free. / Did autism steal my identity? /

or did it create a better me?

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

Claudreen Jackson

Here are two of my favorite PJ stories.  They  are  in “Inspired By Autism”,  but I include them here for those of you who have not read the book.

PJ is an extremely good athlete. He won many gold medals in the Special Olympics for running, jumping and skating. He could not understand rules and regulations enough to play team sports, but he loved the individual events.

The first time that he won a gold medal, he came home, removed the medal from around his neck and proceeded to drop it in the trash. I rushed to intercept his medal disposal and explained to him that this was very important and we wanted to keep it. The medal did not have the meaning to him that it does to us. After that, he would take off a medal that he won and hand it to me.

He is a very fast skater, both roller skating and ice skating. He often skated in Special Olympic events. PJ was the biggest, loudest, fastest, (not to mention blackest) skater in these events, so he became well known.

People began to cheer for PJ. In one event, so many people were calling his name that he turned to look to see who was calling him. He didn’t miss a beat skating, but he did miss skating around one of the cones, so he was disqualified. The officials made the announcement that Pervis Jackson was disqualified.  We all realized this, but PJ was clueless and continued to skate and came in first.

It was decided that he would receive the third place medal because of his disqualification. As the winners came to the podiums, PJ’s usual routine was to step on the third place podium, then the second place podium to get to the first place position. He followed his usual routine, not realizing he was supposed to remain on the third place podium.

The first place winner was already standing on the first place podium and PJ joined him, so we had two smiling winners on the first place podium and none on the third.  (We know that this would never have happened with our “typical” athletes. Can you imagine this scene in one of their events?)

PJ participates in sports for the joy of the sport, not for the reward at the end. I wish I’d had this attitude as I was growing up. I was terrible at sports and would never participate because I knew that I would not do well. There was no “joy of the sport” for me, so that was something that I missed out on, but PJ didn’t miss it.

To paraphrase Thoreau , ” those who do not keep pace with their companions may hear a different drummer. Let them step to the music they hear, however measured or far away.”

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

Claudreen Jacks

I forgot to mention PJ’s art in “Inspired By Autism”. On the cover of the book, the art work that I am proudly displaying was done by PJ. For a period of time, he was  very interested in creating pictures with beautiful, bright colors.

We accidentally discovered this interest when I was working with him with coloring books and crayons. No matter what the picture on the page was, PJ always colored the same way, with no regard for lines or the actual picture. People, animals, landscapes all looked the same when he was finished with the picture. Other than carefully choosing his colors, he seemed not to care what he was coloring.

I was constantly explaining the pictures, “This is a boy; This is a house; This is a car. etc. We have to not color past the lines.” I would hold his hand and try to guide him to the correct way of coloring a picture.  Our sessions always ended with both of us being frustrated and me feeling more and more depressed.

One day, it dawned on me to  quit upsetting both of us. He loved coloring, but he wanted to do it his way. I quit giving him coloring books and started giving him plain paper, crayons and markers. Lo and behold, he enjoyed coloring again. His style of coloring was mixing bright colors in a way that pleased him. His art was the only thing that he did not have to be prompted to do and he worked on it every day.

He did not see lines in pictures, so once  I quit trying to force this, I could see his vision. I had to change my perception of how he should color.  Dr. Norman Vincent Peale said that “Once your perception of an object changes, the object itself changes.” Same thing with people, especially people with autism. Autism forces you out of your box and your comfort zone!

I loved seeing PJ sit and work on his art. I even sold a few pictures, trying to prove that he did have some skill, because most people were either intimidated or “put off” by his strange behavior. However, my dreams of him being this great artist came to an end because after a few months, he totally lost interest in the activity that I was so proud of. I have not been able to inspire any interest in him again.

It was important to me that his art be the cover of  “Inspired By Autism”.  My publisher felt that I should be shown featuring his art. That is how the cover of the book came about. The cover was “Inspired By PJ”.

I would like to close with a comment from Mary O’Neil, the director of Burger School for students with autism, the school PJ attended for most of his life. She wrote the foreword in “Inspired by Autism” and this is part of it.

“We learned from PJ the important lessons in life, to love the raindrops on our faces, to keep the music in our heart and to color each of our days with the brightest crayons in the box.”

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

Claudreen Jackson

God bless America because we have freedom of speech. In school, I learned about the freedoms we have in America, but never thought much about it. I didn’t appreciate what a great country America is. I didn’t say a perfect country, I said a great country. People are trying to come to our country everyday.

I never thought about freedom of speech until I became the parent of a son who cannot talk, so I have to speak for him.  As I met others who cannot talk, I realized that I could speak for them. Someone had to.

So that is why I tell my autism story, even though it is not a success story. I came very close to “keeping my mouth shut” because my story was not a story that everyone wanted to hear. It was extremely difficult because I was a shy person, but I learned from other parents who were speaking for their children.

When PJ was diagnosed, autism was so rare that it didn’t even have its own medical category. I became a member of the Board of Directors of  MSAC (Michigan Society for Autistic Citizens), now Autism Society of Michigan  in 1982 when PJ was seven years old. The board members had been to the State Capital in Lansing to a legislative session to get a separate medical category for autism. They had been turned down.

When I joined the board, we were set to try again. That’s something else I learned from parents, not to give up on something as important as this. I also learned that in America, we can change a law if enough people present the right information in the right way.

After the board members had reworked our petition to satisfy the requirements, we were ready to try again. We said that if we got turned down again, we would take our children the next time, because our lawmakers  did not really understand why autism needed a separate category. If we could not tell them, we would show them.

I will never forget the drive to Lansing. I was the only person coming from Detroit, so I had to drive there by myself. We were due to meet at the State Capital at 7:30 a.m. It was dark and raining when I left home and it rained all the way there. This was before the days of mapquest and  cell phones, so of course, I got lost because my directions were not correct. No businesses were open for me to make a phone call. I finally passed a factory that had a huge door open, so I stopped and asked the workers how to get to the State Capital.

When I finally arrived, I was escorted to the session that had already started. I was hoping that this time we would get a separate category for autism. The Bill passed and it became a law that autism now had its own medical category. God bless America where I got to see the legislative process at work.

I’d thought that I was through speaking up for people with autism, but here I am again. I am not always comfortable speaking up, but sometimes you want something said so bad that you have to say it yourself. Thank God I live in America where I have the right to say what is on my mind.

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

Claudreen jackson

“He’s always going to have to live with you and you’re not going to live forever.”  “He can’t be cured because there is no cure for autism.” “What he’s doing now is what he will always be doing”. (What PJ was doing was jumping, flapping his hands and screeching). “He is severely mentally impaired as well as autistic. Nothing can be done.”

These are the comments that I got from doctors as I was trying to find answers for my son. I went from doctor to doctor to doctor, hoping someone would say, “I can work with him.” I never heard these words until I enrolled him in Detroit Public Schools Project Find.

I was making the rounds of the doctors looking for “The One” who would help me. No luck. Other than the psychiatrists who would prescribe his medication, I got nothing except “You’ve got to keep him “centered”. “How do I do that?” I would ask. I never got any answer.

There was one exception. There was one doctor at Lafayette Clinic in Detroit who did help me. She agreed that he could not be “cured”, but she did give me some guidance and instruction. She also gave me sympathy. Lord knows, I sure needed sympathy.

She videotaped PJ’s behavior and we sat and watched it together. She pointed out  that he had powers of reasoning and logic and how she could tell this from his behavior. No one had ever said anything positive about my son. She gave me other insights from her observation of his behavior. I still appreciate her and this happened in the late 1970s.

Special Education was a different story from my experiences with the doctors.  I sat down with PJ’s  teacher to go over an IEP as she told me her goals and objectives for him. The doctors had already told me nothing could be done, so I didn’t really believe she could accomplish anything. Lo and Behold, she accomplished some of her goals,  such as toilet training  (Whew), less destructive behavior, less abusive behavior, etc.

I know that there are doctors who have done much for people with autism, but my help came from professionals in the field of special education. I wrote this poem for all the professionals in the special education field who helped save my sanity and kept me from becoming autistic myself. This is the first one of the “Special” poems that I wrote.

“Special” Special Educator

Special is as special does / and “special” you shall be / when you care for special  people who are not like you and me.

You’re trying to “save the children” / and you’re doing it with grace / and love and dedication / and a smile upon your face.

You all are “special” people / you taught me how to see / to look into the inside / and let the outside be.

Your determination caught me. / I can make it if I try / I am learning to be patient / I am learning not to cry.

I am learning to be positive. / I’ll do what I can do / and if I make some progress / It’s what I learned from you.

I don’t know why you do it. / I don’t know why you Care / But I have to tell you how I feel. / Thank God that you are there.

During the years that Pervis and I were separated, I knew that I could always count on him if  I needed something for PJ or myself.  He paid the bills at our house when he paid the bills at his house.  He gave me extra spending money  and constantly checked on us to make sure that we didn’t need anything.

However, there were times when I decided that I would not rely on Pervis and that I would handle my situation by myself. I hated the fact that I always needed help. I still do. When you have a child handicapped by autism, you need help. You can not do it alone.

So that’s how it came about that my electricity was cut off. I never saw a notice about this, or I would have let Pervis know what we needed.  It was a Friday evening  in the early 1980s and back then if your utilities were cut off  on Friday, you had to wait until Monday to get them back on.

Pervis came to check on us and we had no electricity.  The house was not only dark, it was also cold, because with no electricity, there was no heat. Pervis was shocked and extremely upset with me. “How could you let this happen? This did not have to happen. Why didn’t you let me know you needed money for utilities?’

For his part, PJ was frantically running around the house flipping light switches and trying to turn on radios  and TVs.  “Look at our son”,  Pervis said. “He doesn’t understand any of this. You two can’t stay here in  the cold and the dark. You have to come home with me.”

I looked at PJ getting more and more frantic as his behavior began to accelerate. I felt so bad and incompetent.  We were in for a difficult weekend if we stayed at home. I agreed that this situation didn’t have to happen. I packed a bag for PJ and me and we went to spend the weekend with Pervis where we would be warm and have electricity. I again had to admit that Pervis wasn’t ALL bad. He constantly tried to make sure that PJ and I were OK.  It was this kind of  looking out for us that led to us eventually getting back together.

What do parents do who don’t have someone to help them? We thought there should be a place where parents could get emergency help without having to jump through hoops. This was the beginning of our wanting to start PJ’s Foundation.  Years later, after we started the foundation and I mentioned this to a parent, she said, “I’ll jump through the hoops if I have  to”. We parents  get so used to all the red tape and hoop jumping that it becomes a part of our life as we try to find services for our children.

We are a small foundation and we can’t help everyone, but we can help someone.  So can you.  A friend or family member trying to parent a child with a disability may need a little support and assistance now and then. You, too, have  “a spoonful of comfort” to share.  I hope that you give this some thought.

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

Claudreen Jackson

In Downtown Detroit is a large conference center, Cobo Hall. Many conferences and events are held there. Every holiday season they have a beautiful display of Christmas trees, decorations and holiday items. When PJ was four or five, his teacher had scheduled a field trip to take the class to see the holiday wonderland. She asked some of us parents to go along to help with the children.

That was the last thing that I wanted to do.  I reluctantly agreed because I knew that my son was one of the most aggressive, hard to control students that she had. I thought about keeping him and me home and skipping the whole outing, but decided to support her efforts by going along.

Of course the trees and decorations were beautiful. I wondered if PJ even noticed them. He didn’t seem to be aware of any change in his environment during that time. I told myself that even if I was wasting my time that I was trying to be a good mother.

I started looking around at the other children who were there. I saw children in wheelchairs, walkers, braces, helmets. That brought me out of my PJ induced self pity.  I had never seen so many children with disabilities in the same place at the same time. What is going on?

Then it hit me. Duh. That’s why you are here today. It is children with special needs day. I was surrounded by children with special needs. That meant that their parents also had special needs. I was not the only parent who had challenges in raising her child. I looked at each of these children and realized that they also had a mother who loved and protected them. If their mother could not love and protect them, I understood that. I’ve been there, too.

Blessings to all “special needs” parents. If I had not become the parent of a child with a disability, I would never have understood what you go through. I wrote this poem for PJ, but feel free to accept it for your own child.

“Special” Special Child    (with thanks to Rogers and Hart)

You are my little special child / My funny valentine / An accident of Providence?/ Or are you by design?

It matters not the answer / for you are here with me. / That you’re not like the other kids is mighty plain to see.

But you are a worthy person / who has come a long, long way. / Helping you has helped me grow / to where I am today.

There’s something I must tell you / thought the words are nothing new./ They’ve been sung so many times / I say them now to you.

Is your figure less than Greek? Is your mouth a little weak? / When you open it to speak are you smart?

Though other folks may think you odd / you’re my favorite work of art. /  My funny little valentine / you’ve slipped into my heart.

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

Claudreen Jackson

The way we were before the mid 1970s is that we were a country of large mental institutions where we sent the people with mental impairments or challenging behaviors. When my son was born in 1975, handicapped by autism and severely mentally and emotionally  impaired, I set about looking for the right institution for him. I thought they had the answers to my problems. I was told that there were “places for people like him”.

The more I discovered about these institutions, the more depressed and horrified I became.  I found that children with my son’s challenging behaviors were heavily drugged, restrained or both. I talked to parents whose children were institutionalized and heard many horror stories. The way people  were showered is they were lined up naked against the wall and hosed down. People were dressed in the dirty clothes that someone else had worn the day before. Electro-shock therapy was routinely used.

I found out so much that I realized that I could not institutionalize him. That was not MY answer. I was paralyzed by fear and did not know what to do. I was afraid to keep him and afraid to turn him over to anyone else. My fear of what would happen to him if I didn’t keep him at home was greater than my fear of keeping him.

In 1975, the Federal Government mandated that the states close down the big institutions if they wanted federal money. Now there was the problem of what to do about them. That was left up to families and caregivers who did not have the answers either.

A study was done that found that the biggest  categories of people in institutions were severely mentally impaired, severely multiply impaired and autistic. Michigan State Senator Debbie Stabenow,  (now a United States Senator) became my hero. She authored a bill so that parents of children in these categories would get a stipend from the Department of Mental Health to help keep their children at home. It wasn’t much, but it was enough to let me know that someone cared. Isn’t a society judged by how it treats the poor, the elderly and the disabled? Someone has to care about them.

So, without knowing it, Senator Stabenow became my “spoonful of comfort”.  We need people who care in positions such as hers. This all happened during the 1980s. but I will never forget how she impacted my life.

I have learned so much during my “autism odyssey”.  I have learned that there are people who care and there are people who don’t care. We are a society who worships the biggest, the brightest, the richest, the prettiest. Are people with disabilities worth less because they do not fit these categories?

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

Claudreen Jackson

If you are the parent of a child with autism (or any other disability) you are in my thoughts and prayers. We have so much stress and pressure in trying to raise our children. I don’t know what you are going through, but I know you are going through something. We have the same problems that everyone else has (bills, sitters, romance, etc) but problems in our life is multiplied by the challenges we have with our children.

You are my Heroes. When I was trying to adjust to PJ’s autism, I joined many parent groups that helped me to adjust. I learned from these parents who were committed and dedicated to making life better for their children. Many advances in awareness, social acceptance and better services were made because of parents tirelessly working to achieve them. We wanted improvement so much that we had to do it ourselves, and still are.

If you  and your child are not a success story, (as PJ and I are not) I hope that you will remember to savor your child’s small successes. I hope that you will not compare your child to other children his or her age who do not have a handicapping condition. I hope that you find support and respite and someone who understands what you are going through. Pervis and I started the PJ Foundation for this reason.

When I was down, I could often find my spoonful of comfort in the Bible. One of my favorite scriptures that gave me a lot of comfort became the Guiding Principle for the PJ Foundation: “As you have done it unto the least of my brethren, ye have done it unto me”. (Matthew 25:10)

When I was weak and at the end of my rope, a scripture that gave me comfort was Phillippians 4:13, “I can do all things through Christ which strengtheneth me.” Take your burdens to the Lord and leave them there was my method for making it through the day. I didn’t always remember to do this but when I did, my day was much better. When we are in the dark, God will turn on lights for us.  We might not get all the light that we want because it may be one light at a time.

I wish I could do something for all of you. All I could do was write you a poem.

“Special” Special Parent

Most “special” of the special ones / You were my Guiding Light / When it was cold and it was dark / and life was black as night.

When I was cold and I was scared / and lived in lonely fear / You showed me just what I could do/ and helped me dry my tears.

Though you could not cure my son / You helped me to “cure” me. / You turned on lights to chase the dark / so I could plainly see.

Now, I know that you get weary / and I know that you get worn / But you’ve earned your Star in Heaven / since the day your child was born.

I know you’ve had some sleepless nights / and you could use some rest / But love is shining through the worn spots / I pray that you be blessed.

Though I’d like to give you medals / to show you that I care / All I can do is give you Love /  and remember you in prayer.

Until next time : May the Presence of God watch over you. May the Power of God protect you. May the Love of God enfold you.

Claudreen Jackson

It was in 1972 that Pervis and I decided to have another baby. The Spinners had their first gold record and the future looked bright and shiny.

Pervis Jr (PJ) was born in 1975 and the family was overjoyed at our new addition. It was  months after his first birthday when the doctor told me that he had regressed since his last visit and mentioned the word autism.  As his behavior became worse and worse, I had to accept that there was a serious problem with our son.

While I was bawling and crawling and bumbling and stumbling under the drama and trauma of autism, Pervis was traveling the world performing. He was also denying that there was a problem with PJ. He looked so normal that it was easy for him to convince himself that PJ was going through a temporary backslide.

When there is a child with autism,  50% of the  marriages don’t survive. I also had to contend with the groupies and gropies who were trampling all over our marriage. We were  not prepared for the chaos and conflict and ended up separated.

That’s when I found out just how much I could depend on Pervis when it came to our son. During all the years that we were separated, he was always there for PJ. No matter how we felt about each other, when it came to our son we were together. We were each others’ support network.

After years of separation, we got back together and discussed what we could do for people with autism and their families. Pervis and I both felt that we had a responsibility because we knew just what families have to endure. We had many discussions before we decided on the Pervis Jackson Jr Autism Foundation.   We were both “Inspired By Autism” to start the foundation.

Pervis died before we could implement our plan. Pervis was the one with all the courage (some might say nerve) and now he was gone. I had to decide  if I was going to try to fulfill his wishes. Thanks to the support of the  Spinners, the Spinnerettes (Spinner wives) and some great friends,  we were able to start the  PJ Foundation.

Pervis is gone,  but the lessons, inspiration and motivation he gave me will go on and on. The author and motivational speaker, Les Brown, reminds us to not die with our music still in us.  Pervis died before his words about his son could  be heard, so I am including one of his poems to PJ.

From Pervis to Pervis

People look at you like you don’t exist,

But you have a lot of qualities that the people miss.

You’re different from others is so many ways,

There are a lot of things that you want to say,

So I’ll be your voice, come what may.

You look to us for guidance and truth

I’ll try to do my best for you.

I’ll do for you whatever I can,

You are always part of my plan.

The bottom line is, I’m your old man.

And I don’t care what people say

I’m going to love you anyway.

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

Claudreen Jackson