Our Civil Rights

This post is inspired by Bruce Hawes, songwriter, producer, arranger, author of “Growing Up In The Sound of Philadelphia”.

“Sing a song, full of the faith that the dark past has taught us. Sing a song full of the hope that the present has brought us”  (from “Lift Every Voice and Sing”)

I am sure that you have heard the words of this song which was the anthem for the civil rights movement 50 years ago, and is becoming the anthem again. I have never wanted to write about our civil rights. I still don’t want to, but in light of all the news stories I feel compelled to say what is on my mind. I write not only for my son, Pervis Jr,  who cannot speak, but for other men in his situation. Men with a mental impairment who may not know how to follow police instruction, who may not be able to explain their actions.

Some of our civil rights are the right to privacy; the right to free speech and expression; the right to freedom of movement: the right to life and safety. These rights should have freedom of infringement from government, social organizations and private individuals. I want to say that my civil rights have not been violated. In fact I am making use of my civil rights to write this message.

Today is Martin Luther King Day and  there is much being said about a new civil rights movement. I am wondering if we are back where we started from.  So are many others. You have seen the marches and the protests, not just by black people, but by people of all races. Who would have thought that we would be going backwards? We know that the power structure in this country is tilted away from some people. Men with with mental impairments are especially vulnerable. A physical impairment can be seen and recognized, but a mental impairment is invisible.

Thank God that in America, we have civil rights. That’s why the news media can show what is happening across the country. That is why we know what is going on. There are countries where the news media can only show what the government wants to show. There are countries where people can be killed for speaking up against the power structure. We are blessed to live in America and I don’t want to see us going backwards. “Those who don’t remember the mistakes of the past are doomed to repeat them.”

There is a new generation of marchers in the streets. There are many people concerned about us losing some of our gains.  If there is a new civil rights movement  going on, I know that I will not be joining in the protests and marches, but I cannot remain silent about our fears of losing some of the ground that we had gained. I feel that I must try to protect Pervis Jr and others like him. They know nothing of their “civil rights.” They are generally well protected and not out in the community alone, but it has happened. Are they considered worth less because of their impairment, compounded by their race?

Pervis Jr’s autism has compelled me to speak up even when I don’t want to. It has pulled me out of my comfort zone for many years.  Pervis Jackson Sr pushed and prodded me to write and speak because he felt that we owed it to our son and others in his condition.  I agreed, and I always had his support and encouragement.  When Pervis Sr. passed away in August 2008, I lost that support, but the other Pervis is still here and still needs my protection.

I am thankful that I live in America where I can use my freedom of speech. I am thankful that there are the “best of them who look out for the least of them”. I am thankful that we are not just a “survival of the fittest” society,  that everyone has worth.

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

Claudreen Jackson

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From The Lower End Of The Spectrum

“As you have done it unto the least of my brethren, ye have done it unto me”.  Matthew 25:40

I am speaking of the autism spectrum and ASD. I am speaking from the lower end of the spectrum because that has been my vantage point for the last 39 years. My son Pervis Jr is on the lower end and we have not been able to elevate him. He still cannot read, write or speak and cannot live independently.  He has come a long way from the aggressive person that he used to be, but he still has deficits.

I feel compelled to write about this because of  stories that Dr, Phil did on Sept 14 and 15 about two parents with aggressive children on the lower end of the spectrum. One parent wanted to kill herself and her child and the other actually tried and is now in prison. She does not belong in prison and I am glad that Dr. Phil is trying to help her. I have heard many such stories down through the years.

I know their pain. I have been where they are now. I know the devastation, the desperation, the despair and the hopelessness  that drove them to do the unthinkable  I also had those thoughts, but I could never act on them. I was blessed to have doctors who figured out the right combination of medications to help my son control his behavior. I also did all I could  to learn to manage his behavior.  I also had help from his older brother and sisters.

When I was in the depths of my despair, I could not predict that one day Pervis and I would be able to live together in peace and harmony. We parents of the severely impaired do not have a lot of resources or people who want to work with our children. I understand. They want to work with children on the upper end of the spectrum where there is a chance of success.

That is why I am thankful to Dr. Phil for tackling such an unpopular situation. He talked to Dr Frank Lawlis who has written a book, “The Autism Answer”. Dr Lawlis said that his book helps people with autism no matter where they are on the spectrum. Dr Lawlis said that these children have brain processing problems (I know) and certain things in their body or their environment can trigger this challenging behaviors. We figured out what some of the environmental triggers were for my son and had to eliminate them. It was called “structuring the environment”.

I have not read “The Autism Answer” by Dr. Lawlis, but a book that was a great help to me was ‘Gentle Teaching” by Dr. John McGee who was a psychiatrist at the University of Nebraska Psychiatric Hospital and on the staff of the university. When I was on the board of directors of the Autism Society of Michigan, some of us went to Omaha to study with  Dr. McGhee.  The time with him had a great influence on how I managed my son’s behavior (and mine) when I returned home. We do not have enough people like hum working with our children and parents.

I wrote about “Gentle Teaching” in a previous blog post, but what Dr. McGhee did that helped me so much was to teach us about “caregiver behavior”.  He taught us to decide what kind of caregiver we wanted to be. He called it “defining our posture”. He also taught us to decide ahead of time how we would handle challenging situations. When you are in the midst of the challenging situation, you are not thinking as clearly.  (Sometimes, I handled it by removing myself and getting a glass of wine).

Not much impresses our children on the lower end of the spectrum. Pervis Jr did not know or care that his father was a well known entertainer. As a member of the Spinners singing group, Pervis Sr had received many awards and traveled to many countries around the world, but Pervis Jr was unaware of any of his father’s accomplishments.

Since my son cannot speak, I feel compelled to speak for people in his situation. He is a large, intimidating looking black man who cannot talk which is a recipe for disaster in the wrong situation. You have heard those news stories.

Thanks to Dr. Phil for trying to do something about our situation.

Until next time: May the love of God enfold you.

Claudreen jackson

 

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It Could Be Me

“Let not your heart be troubled, Neither let it be afraid”.  John 14:27

Words of comfort that have seen me through many a troubling situation with Pervis Jr. When you are the parent of a child with autism or any other disability, there are going to be troubling situations. When Pervis Jr was younger, I was full of fear and anxiety about his condition and his future, so I was always looking for comfort. I was also comforted by the words of Dr. Norman Vincent Peale, “The only force more powerful than fear is faith. When you feel fear, counter it with an affirmation of faith.” This has been one of my guiding principles during my autism journey.

But I do have to face reality. One of Pervis’ realities is that he is a large, intimidating looking black man who can not talk.  In  light of some of the situations that have happened, I know that he is a perfect candidate for what has happened to other black youth. If you just look at his appearance, you might not think that he has a handicap. He has learned to control most of his challenging behaviors, but can still be unpredictable.  When he was younger, he had  many behaviors that would get him shot  today if he were alone in the community.

He is so well protected, that he is safe because he is  never alone in the community so I don’t have that concern, or do I?.

One day, my doorbell rang and I answered it to see a woman standing on my porch talking on her cell phone.  I waited for her to finish her call, but wondered what she wanted. It turns out that Pervis Jr had left the house and  was walking on the next block.  He was barefoot and in pajamas. She had started questioning him and of course, he did not answer. So she called the police to make a report. However, her questions did cause him to come back home and slip in the side door  from which he had left. She had followed him to see where he was going.

I knew none of this. Her cell phone call was to cancel the police report.  When she informed me of where she had seen him, my thought was that he couldn’t have gotten that far since I had only been upstairs in the bathroom for a couple of minutes. I thanked her for looking out for him but wasn’t sure that she was right about his being that far away. We talked about how to make police aware of people with my son’s condition and I promised to keep a better eye on him. That’s why I  say it could be me. My situation could have turned out much differently and I could have been one of the mothers crying to the TV cameras and saying that my son did not deserve to be shot.

The next time that I went upstairs, I was watching to see if he would slip out of the house.  He did, but this time I was aware and I was following him. He was down the block, around the corner and on the next block in less than a minute. So now, I knew that he could go that far that fast. He moves very fast when he gets going. I followed him to the corner where he was starting to cross the street even though the light was red.

I called his name and he stopped, surprised to see me. I brought him back home, but now, here was a new worry. Pervis Jr, alone in the community. He was starting to slip out whenever he thought I was busy upstairs.  (And they say that autistic people don’t sneak). I finally had a doorbell installed that would ring whenever the door was opened from inside. When I would hear the bell and catch him trying to sneak out of the house, he did have the decency to look guilty, but he stopped this behavior.

They say that you can either worry, or you can pray, but don’t do both. I have chosen to pray, because I have spent too much time with worry.

May the love of God enfold you. May the power of God protect you.

Claudreen  Jackson

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A Bird In The Air

“A bird in the air will carry your voice to those who will listen.”

I don’t know where  I read that quote, but it has been my guiding principle whenever I write. I thank those of you who have responded to my posts in person or by adding comments. You all have inspired me to continue writing.  Thank you for listening and giving feedback. I have no answers for autism, but I do want parents and families to know that someone understands the challenges they face.

That’s why we formed the Pervis Jackson Jr. Autism Foundation (pjjraf.org) after my husband,  Pervis Sr died in 2008. Pervis was a member of  the Spinners. one of the top singing groups of the ’70s and ’80s. We had discussions for years about how we could help children with handicaps because we knew first hand about the challenges. Our son, who is 39 years old now never understood that his father was a public figure, never could sing along with us and was not impressed by fame.

Having a voice is also why I wrote “Inspired By Autism”,  my book about my experiences raising a child who was and still is handicapped by autism. I did not want to write the book because it was not a success story, but Pervis Sr nagged and pushed me to write.  He said that  it was an autism story and every autism story is not a success story. I hope that along with the increase in the diagnosis came an increase in the success stories. With all his prodding and pushing, Pervis did not live to see the final product.

Having a voice is something that my son does not have, nor does he want.  We spent years and money trying to get him to speak. We took Pervis Jr to speech therapy long past the time that we saw that it was not working.  He has a speech impediment and needed to want to speak bad enough to overcome the impediment. Speech therapy brought out his aggression and hostility and all the challenging behaviors that you hear about with children with autism. The speech clinic finally discontinued him.

We found out the hard way about trying to force a child with autism to do something that he or she does not want to do. Pervis Jr  also has cognitive impairments and does not want to do anything that he does not see a reason to do. To this day, if he sees a reason for something, he is far more agreeable.

My son’s lack of voice is what compels me to speak out. He is a big, intimidating looking black man and does not know the effect he has on others. Thank God we live in America and have freedom of speech so that we can speak out. Freedom of speech was not important to me until I became the parent of a son who had no speech.

Another of my guiding principles for writing is also a quote that I read somewhere, “If there is  something you genuinely need to say, there is someone who genuinely needs to hear it.” I genuinely need to share my thoughts and feelings about being the parent of a son who is handicapped by autism, which is one of the most misunderstood of the disabilities. Not only is it a puzzling condition, the fact that the diagnosis has so greatly increased is puzzling.

I will end with the scripture that is the guiding principle for the Pervis Foundation, Matthew 25:40, “As you have done it unto the least of my brethren, ye have done it unto me”.

May the power of God protect you. May the love of God enfold you.

Claudreen

 

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A Trip To The Hospital

“For lo, I am with you always”. Matthew 28:20  /    “Trust in the Lord with all thine heart; and lean not unto thine own  understanding”. Proverbs 3:5.

These are the two scriptures that I kept repeating to myself last week during a recent hospitalization. When an illness struck, I asked to be taken to the emergency room of the hospital that has all my records. I was so sure that they were going to treat me and send me home that it never occurred to me that I was sick enough that they would keep me.

This hospital did not have a good reputation according to friends and  acquaintances. This is the hospital where my husband died. This is the hospital where my father died. People had said to me that if I had taken Pervis to a different hospital, his life might have been saved. I always felt that his condition was serious enough that the outcome would have been the same no matter where I took him. so I was mostly confident of my choice. Same with my father. I saw how hard the staff worked to save his life.

Still, I had this nagging doubt once I was admitted there. I was awake all night worrying and  wondering if I had made the right choice. Suppose I came in with something minor  and they made a mistake that would cost me my life. Suppose all the detractors were right and I had come to a hospital with an incompetent staff.  Suppose I came out of the hospital more ill than when I went in.

The two verses that I started this entry with were my only comfort during that long worrisome night. I kept repeating them to myself and doing what we are supposed to do when we face an uncertain outcome. I put my Faith in God who is in charge of everything, including the doctors and nurses in this much maligned hospital. I felt better, though I still could not sleep. I tried to not lean into my own understanding because my own understanding was confused, at best.

I made it through the night. The next morning, they started testing me to get to the bottom of what had caused my illness. Test after test, until the realization dawned on me that they were leaving no stone unturned to diagnose my condition.  There was still the worry that someone would read a test wrong. I realized that they worked in teams and had to come to agreement about test results, so that made me feel better.

I am so blessed! All my tests came back with good outcomes and what had brought me there was a temporary condition that would pass. Now, I have my own experience with the hospital. When anyone makes a negative remark, I can recount my positive experience. I am so thankful to the doctors and nurses for their care of me. My daughter also reminded me of people who had been saved in this hospital.

I did not have to worry about PJ. As I mentioned before, he lives in a group home most of the time now. For the first time in 37 years, I could concentrate on myself during an illness. We parents of children with disabilities take care of them “in sickness and health”.  Sometimes we don’t take good enough care of ourselves. I pray that you have someone to lighten your load when you are ill. I pray that you remember to care for yourself along with all your other caregiving. I pray that the PJ Foundation maintains the funds to help parents in need.

My scriptures that have always comforted me are still my comfort. “God is our refuge and strength, a very present help in trouble”.  Psalm 46:1

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

Claudreen Jackson

 

 

 

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PJ’s Art – 2

I am using a sample of PJ’s art at the beginning of my blog. That is also his signature on the right side of the picture. I am so proud of all of his art, but he totally lost  interest in any art projects. He used to come home from school, get his papers and his markers and color for most of the evening. I loved watching him because when he was engrossed in what he was doing, I saw a different PJ.  He was focused and seemed to know exactly what  colors he wanted to use and how he wanted the picture to look.

So, of course, I thought he was going to be an artist. Then, one day, he wanted no more to do with his art. In fact, he started taking down the pictures that I had framed and hung on he wall. Then he started tearing them up. I took the rest of them off the wall in order to save them. His art is featured on the cover of “Inspired By Autism”.  It is also featured on the cover of the PJ Foundation calendar for 2013. I was very sorry that he lost interest.

It was the same thing with music.  PJ has good rhythm and can keep a beat, so we bought his a bongo drum, which he seemed to love. We even hired a bongo player to work with him. PJ loved playing the bongo, for five minutes. His music tutor told us it would be a waste of money for us to keep paying him to give PJ lessons. PJ was not interested in fortune or fame which were the two forces that drove musicians who wanted to be a success. When PJ’s arms got tired, he was through and wanted no part of music lessons. You know how our people with autism can be if you try to push them too far.

PJ has a beautiful singing voice. He does not sing the words, but  is good with the melody and the timing, so you can always recognize what song he is singing. But he only wants to sing his favorite part of the song. You can’t get him to sing the whole song. So his sister, Stephanie, who also sings decided that they would do a duet and she would sing until they got to PJ’s favorite part, then he would take over. Nice plan, but it didn’t work. They were to sing at a benefit for autism, so I thought whatever he did would be appropriate. He sang with his back to the audience and to the microphone and would not turn around to face the audience. This incident is one of the comics that I have included in “Inspired By Autism”, but I wasn’t laughing at the time.

In fact, the comics in “Inspired By Autism” are about  things that I thought we would be successful in getting PJ to do. I was always proven wrong. I’m sure you have heard the saying “laughing to keep from crying”.  I finally learned to laugh, mostly at myself for always thinking my projects with PJ would have a different outcome.  I had to learn to accept the fact that PJ was always going to be PJ and my goals for him were not his goals.

Those of us whose children do not “recover” from autism get disappointment after disappointment in our quest to help our child. I shed many a tear about these failures. I learned to stop crying and accept PJ as he is. That fact did not diminish my love for him. In fact it made me love him more. He is just as worthy as he would have been had we succeeded in some of our attempts.

He has matured into a pleasant, agreeable young man who does not want to hurt anyone. I would never have predicted the young man he has become. I am proud of him because I know that he has overcome many obstacles to become thew person he is today, autism and all.

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

Claudreen Jackson

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Merry?? Christmas

You may have heard the old saying, “a dollar short and a day late”.  I try not to live up to that saying anymore, but I am a day late (maybe even two) in writing about Christmas.

Before PJ, Christmas was a time of joyful celebration. My house was always decorated for the holidays and we had open house during the holiday season. There was always food and people coming to visit. My house was the gathering place for the family and I enjoyed entertaining.

After PJ, everything changed for me. Depression and exhaustion took over during the holiday season. But being as how back in the 70s and 80s, people didn’t really understand what you were going through when you had a child handicapped by autism, I tried hard to keep up appearances and traditions.

I did not feel up to having company, but I still allowed my house to be the gathering place because I had other children and  grandchildren and I wanted them to have as normal a holiday as possible. My husband was an entertainer, so people in the business would often drop in for holiday festivities.  So I pasted on a smile and tried to carry on. Smokey Robinson and the Miracles had a song that I always thought about during these times. It was called “Tracks Of My Tears”. Part of the words were:

Take a good look at my face / you’ll see my smile looks out of place / If  you look closely, it’s easy to trace / the tracks of my tears.

Of course, no one was looking closely, so people didn’t really understand what I was feeling. I was also trying to get PJ to be interested and excited about Christmas; to no luck. In fact I still have a picture of him with Santa Clause and they both look like they would rather be someplace else. PJ was well behaved, but totally unimpressed. Santa was no more impressed with PJ than PJ was with him.

I had such mixed feelings about Christmas. Part of my pain was that I really did not want my house to be the gathering place anymore. Part of my pain was caused by the fact that I was resisting the truth about PJ and still trying to “normalize’ him.  He just did not care about all the people and decorations. He would much rather be away from all the celebrating.

And that is just what he did. When people would start arriving, PJ would retreat to his bedroom and close the door. When the house was full of my “merry” family, PJ was nowhere to be seen.  Everyone was “merry” except PJ and me.  I would take food up to him during the course of the day, but he wanted no part of the traditional Christmas menu. He just wanted his same old fries and sausage. I was thankful for his way of handling the situation because at least if he were away from everyone, there would be no meltdowns or explosions.

So now, PJ and I are both old enough for me to opt out of all the Christmas festivities. This Christmas is only the second Christmas that I let everyone know that there would not be food and fun at my house at Christmas. What a relief it has been! I have finally learned to be true to myself.

I would not change the way I have done things, but I am changing the way I will do things for the future. For most of the Christmas gatherings, PJ Sr. was alive and helpful, but now he is gone and PJ and I are on our own.  I will soon be taking a trip and PJ will be at the group home, which he seems to like.

If you are the parent of a child handicapped by autism, I won’t say I hope you had a “Merry Christmas”.  I will say that I hope you were able to enjoy the day and that you weren’t the one responsible for everyone else’s enjoyment.

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

Claudreen Jackson

 

 

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A Place For A Gold Record

I have mentioned before that Pervis Sr was a member of the Spinners, an award winning vocal group. They began their career with Motown Records, but most of their hits were with Atlantic Records. Although Pervis Sr was a man of many accomplishments, Pervis Jr (PJ) is unaware of any of them.

PJ is unaware of fortune or fame. Does he even know who his father was? Does he care about gold records or awards?

He does not. He is unimpressed by his father’s accomplishments.  Pervis Sr and I would look for any glimmer of awareness in PJ, but there was none.

I, on the other hand am very proud of all that my husband accomplished. His gold records  and awards are still on the wall in  our family room. I am reluctant to part with any of them, but I did recently.

I donated a gold record, a Grammy nomination award, a poster, a picture of the Spinners on a corn flakes box and a set of well-used drum sticks to the Detroit Historical Museum. The Museum just re-opened after six months of renovation with new or enhanced  exhibits.

One of the new exhibits is the Kid Rock Music Lab. Kid Rock is a great Detroit booster who donated a large amount of money to the museum to fund an exhibit about the history of music in Detroit. That is where you can find Pervis Sr’s gold record along with donations by other Detroit artists.   I can’t think of a better place for it to be. Pervis would be very proud.

His gold record  and Grammy nomination award are in a display on the wall to your left as you walk in. There is a large screen showing videos of various concerts. There are two pianos below the screen. I know that he would love to be remembered in such a way in such a place. Thank you Detroit Historical Museum and Kid Rock.

Pervis passed away on 8/18/08. His death happened so fast and so unexpectedly that I am still recovering from losing him. Things like this make it easier. I am not sure how much PJ understands. We took him to the funeral home to view the body and to say good-bye to his father. He kept touching him, so he realized that something was different, but I don’t know how much of the finality of  death that he understood.

The Spinners had a song titled “How Could I let You Get Away?” That is exactly how I feel. Death of a loved one lets you know just how little control we have over saving someone and just how powerless we can be.

Pervis and I had an on-again, off-again marriage, but through it all, he was always there to encourage and support me with PJ, which is how we finally ended up getting back together for good. Pervis also pushed me to write a book about our experiences raising a son who is handicapped by autism. I would say that I can’t write a book because our story was not a success story. Pervis always said, “It’s an autism story, write it.” I am glad that I did because it gave me a purpose  and a focus after his death.

He didn’t live to see the final product of all his pushing, but he would be very proud of “Inspired By Autism”.  He would be very proud of the PJ Foundation which he also pushed for. He would be very proud to know that he is in the Dertoit Historical Museum.

The Kid Rock Music Lab is not the only exhibit. If you do go to the Detroit Historical Museum, there are many other exhibits worth seeing. One of my favorites is The Streets Of Old Detroit. Another favorite is the Underground Railroad exhibit which I like better than any other Underground Railroad exhibit that I have seen elsewhere.

Pervis Sr is gone physically, but he is still a large part of my life. I am sure that he is smiling down on all that has been going on since he left us. I had no courage. Pervis was the one with all the courage. He pushed, mentored and encouraged me, so I am carrying on in his name.

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

Claudreen Jackson

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More More Questions Than Answers

Being the parent of a son with autism has been the ultimate challenge of my life. Most other challenges pale in comparison. Since it is such a long lasting, never ending  challenge, I have been taught patience and endurance, but I have not learned to be content with unanswered questions.

I would like to know more about how adults with autism are living. How many have jobs? How many have been able to hold onto jobs once they get hired? I’ve heard stories about the unsuccessful attempts. I want to know about the successes.

How many adults with autism are able to live independently in their own homes? What about all the children with autism who were mainstreamed? Did it help them to be able to be more independent? PJ has made a great deal of progress, but he is not able to live or work independently.

I have recently been attending parent support group meetings for parents of children who attend some of the Detroit Public Schools special education centers. We all have questions. There is a mixture of disabilities so not all the questions are the same but we all have to learn to live with unanswered questions.

We live in a society that wants people to “fit in”.  Our children do not fit in.  I remember when the fit in problem was so important in my life that I spent three years keeping PJ at home and out of the public eye. We always got  a lot of unwanted attention whenever I took him anywhere. Has that changed? Are our children more acceptable to the public?

When I was keeping PJ at home, I had decided that I would parent him by myself. I spent all my time being enveloped in autism and trying to teach him. I felt that if anyone else had taught their autistic child, I could teach mine. I felt isolated and alone and realized that the situation was more than I could handle by myself.

With our children, it really does take a village. I finally realized that I needed the help and support of professionals and other parents. They became my Heroes.  At least, most of them. Back in the 1980s there were some professionals who had very little respect for  parents. When we made a suggestion, it was often dismissed.  We were made to feel that we were incapable of being a part of our child’s treatment team. Has that changed? Are professionals more accepting of parents’ input?

I had professionals talk to me about “manipulation at home”. I was basically feeling incompetent and they helped me to feel this way.  One of the goals that parents back then  wanted  to accomplish was to get more respect from professionals and to be considered as a team member when treatments for our children were being discussed.  I hope that that goal was accomplished.

I learned that whatever our child’s disability, we parents had a lot in common. We had love, commitment and dedication to our children. We all had to learn tolerance and compassion.  We all  had fears for our child’s future. I had to learn that I couldn’t let fear of the future spoil the present moment.

I am old enough to have a different perspective. Many of the hopes that I had for my son did not materialize. I had to accept the fact that my hopes for his future were not going to come true. I am now living in the “future” that I was so afraid of. PJ has matured and mellowed far beyond what I would have expected. He still has autism, but he has overcome so much that I am very proud of him. I did not think that I could say that unless he was “recovered” from autism.

He seems to want instructions now. When he was younger, he was resistant to learning and would get upset when he was told what to do. Will this continue? Will he continue to  be more co-operative, agreeable and open to instruction? Will he ever communicate in a social situation? Will I ever quit asking questions?

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

Claudreen Jackson

 

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More Questions Than Answers

Since “Inspired By Autism” came out, I have been trying to get answers to questions about autism. I know that there are not a lot of answers, but I have been trying to find out about treatments that have actually worked for people with autism. I haven’t had much luck.

In the 1980s, when PJ was younger,  AIT (Auditory Integration Training) and FC (Facilitated Communication) were being promoted as effective treatments for people with autism.  In Auditory Integration Training, the person with autism was fitted with headphones that produced sounds that were supposed to help untangle brain waves. Of course, this was not being done everywhere and PJ and I would have to travel to Toronto, Canada for the treatment. We would have to be there for at least a month while they individualized the sounds for PJ. The treatment was expensive and I wasn’t sure it would be worth the hassle and expense. I would like to know if it worked and if it is still being used.

In FC, an aide, known as a facilitator would support the arm of the person with autism as the autistic person typed his or her thoughts. The facilitator was only supposed to support the arm of the autistic person, but some of the messages typed were questioned as to whether the facilitator was just supporting the arm or guiding the arm. In the beginning, I thought it was effective, but there were many questions concerning  this treatment. Was the person with autism actually typing his or her own thoughts or were they the facilitator’s thoughts?  The typed  messages sometimes got the parents or teachers in legal trouble.

As recently as last year, a case was settled in a dispute about FC.  Because of the typed  messages, a girl with autism and her brother were removed from the home and the parents had to go through extensive and expensive legal actions to try to prove that the typed messages didn’t come from their daughter, but from the facilitator. They finally got their children back, but it was a harrowing ordeal. We had many harrowing ordeals concerning our children thirty years ago and I am sad that it is still going on.

I did find out that FC was discredited and I thought it was not being used anymore until I heard of this  recent case.  I would like to know if it was ever accurate or effective. I tried it with PJ, though I was not a trained facilitator. He would type words that I put on flash cards, but I was never able to get him to type his own thoughts.

The Option Institute  therapy was something else that I wanted to try. PJ and I would have had to travel to Massachusetts to take the training which was also very expensive. Parents of a son with autism taught the methods that they had used to train their son to help him recover from autism. They were the first success story that I heard of and I really wanted to try this for PJ.  I finally decided against it, but I would love to know if this treatment was successful for other people with autism. I have heard of cases where it was not successful because to fully implement the treatment once you returned home was  stressful, expensive and exhaustive.

In the 1980s, the statistics were that 50% of marriages failed when the family was raising a child with autism. I would like to know if that still holds true. My own marriage came to an end, but because PJ senior was a great help and support during the many years that we were separated, we eventually got back together. PJ was our common ground and we always worked together to make sure his needs were met. I have mentioned before that PJ senior was a member of the Spinners singing group. He traveled extensively, but always tried to make sure that PJ and I were well taken care of. He was so kind to us during our separation that we eventually got back together, which proves that God is still working Miracles in the world.

To parents of children with autism, I want to remind you of one of my favorite scriptures, Galatians 6:9, ” And let us not be weary in well doing: for in due season, we shall reap, if we faint not”.

Claudreen Jackson

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