The PJ Foundation Calendar

Posted on October 13, 2012 by claudreenjackson

“We are the children of God”. Romans 8:16

The PJ Foundation is publishing a calendar for the year 2013. The children featured in the calendar are all children with disabilities, including PJ.  Most of our “calendar kids” attend one of the Special Education schools in Detroit. I know about the push for inclusion, but some of our special kids need to be in a center based program. Our calendar kids have various  and multiple disabilities. PJ does not have multiple disabilities, but he has multiple deficits.

In 1975, the same year that PJ was born, the Education For All Handicapped Children Act was passed.  It said that handicapped children must be educated in the least restrictive environment (LRE). Thank God! Were it not for that law, I can’t say that I would have sent PJ to school. He was so difficult in the beginning, that I was afraid to let him out of my sight. Thank God for the special education teachers who made me feel that they could handle his behavior. I owe a debt of gratitude to Detroit Public Schools Special Education Department.

I mentioned in a previous entry about how our children were treated before special education started. In the beginning, they were tied to a wheel in the schoolyard and as they were walking around the wheel, other children threw stones at them. That story still gives me chills. In the 1940s when I was in school, the ones with difficult behaviors, such as PJ were kept at home. Others were sent to school and just sat in the back of the class, ignored by teachers and fellow students.

How far we have come! We may not be where we want to be, but we are not where we used to be. I am so proud to present some of these students in our calendar. Our students do not get much attention and we want to give them a chance to shine. We are going to make this an annual project and we already have children lined up for the 2014 calendar.  It is called the “Inspired By Autism” calendar. The cover  features PJ’s art (of course) a picture of PJ and a poem ” Special Special Kid” that I wrote for him. The poem is included in my book.

The poem contains the words from a song, “My Funny Valentine” that I used to sing to PJ. Though I have no  my singing voice, PJ did not care. He loved for me to sing that song to him and it was almost as if he understood the words. After one of our singing sessions, I was inspired to write the poem.  PJ loves to sing, too. Although he cannot sing the words, he is good with the melody and the rhythm.

At one point,  Pervis Sr.  tried to sing with PJ to encourage him. It did not work too well because Pervis Sr. was a bass singer and PJ was trying to imitate his father’s voice. PJ still enjoys singing, but you can’t get him to sing on cue. You can’t even get him to sing the complete song. He sings the part that he likes and only if he feels like it. His sister, Stephanie, tried to give him voice lessons, but there were some notes that he didn’t like and he would hit her when she hit one of those notes.  So, “My Funny Valentine” became “our song’.  I could calm him down with it.

Though I wrote the poem for PJ, it applies to all our special kids. It also applies to all our special mothers, though I wrote a poem for them “Special Special Mothers”, which is also included in “Inspired By Autism” and in a previous blog post. We special mothers love our special children, no matter the challenges,  and as  the poet Kahlil Gibran says of love, “As love is for your growth, it is also for your pruning.”

If you are interested in purchasing the calendar, contact me at jacksonclaudreen@sbcglobal.net. You can also get it at zoelifepub.com.

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

Claudreen Jackson

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The Autism Walk At The Palace–2

Posted on October 1, 2012 by claudreenjackson

Growth comes when we aim for our ideal, and not necessarily when we achieve it. –Sheryl Towers

Once again PJ and I participated in the Autism Walk that is given by Autism Speaks  every year all over the country. This was the fifth year that the PJ Foundation Team walked. I am so thankful that we have a walk for autism awareness. For years, I wished that we had a walk, so even though I am old and tired, I feel the need for PJ and me to walk. The walk was held again at the Palace of Auburn Hills. The Palace is the arena of the Detroit Pistons and holds many events year round.

I am sure that you know about Autism Speaks. It has been the fastest growing national organization for autism. It was founded by Suzanne Wright when her grandson was diagnosed with autism a few years ago. Her husband was the head of one of our major TV networks, so she had far more contacts and power than most of us. She was able to accomplish a lot for autism in a short time. I am so thankful for her. My book, “Inspired By Autism”, and this blog are listed on the Autism Speaks web site under Parent Resources.

I also had a booth to sell books, calendars, and note cards featuring PJ’s art. The PJ Foundation is selling a calendar for 2013 featuring children with autism and other disabilities. I am very proud of the calendar and all our “calendar kids” and hope that you will get one.

The day of the walk was cold and windy.  I had dressed us for the weather, but we still got cold after being outdoors for a long time.  The wind kept blowing our  vendor signs and literature away until we came up with  ways to secure them. I got a lot of positive feedback from people who had purchased the book last year. I really appreciate feedback from autism parents and professionals.

PJ has put on weight lately, so I’ve purchased new clothes for him. He was wearing a pair of the new jeans that he had not worn before. They were too big and we had no belt. PJ was circulating around the area where the vendors were. His sister, Stephanie, said that at one point, his pants fell completely down. (Talk about pants on the ground), I’m glad that I didn’t see that happen, but I held on to his belt loops and held up his pants the whole time that we walked. I tried to get him to hold them up, but it doesn’t bother him if they fall down, so I wasn’t taking any chances.

I am still amazed at how many people turned up for the walk. People with autism and their families, professionals and friends all walking together. I find it hard to believe that the diagnosis of  autism has increased so much that now almost everyone knows someone   with autism. In 1975, It was almost unheard of.

I think of all the years I spent being depressed by PJ’s condition. I am trying to make up for those years now. When PJ came along, the Spinners  had hit records and I was enjoying life with travel, parties and shopping sprees. This autism was so far out of my way of living that I could not handle it. I could not pay enough to get sitters for PJ, but if I could, I was afraid to leave him with anyone except his brother and sisters. I wasn’t getting any sleep and my house was being destroyed.

I was traveling among the “Beautiful People” in the world of show business and this child did not fit into my plans. But I found another group of “Beautiful People”; parents of children with autism and professionals that worked with us and our children. I can never thank you all enough for all I have learned from you. You are truly my heroes!

I will leave you with the words of Kahlil Gibran; “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”.

Claudreen Jackson

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Inspired By Autism

Posted on September 15, 2012 by claudreenjackson

“How people think about events in their lives determines how they feel about them”. Aaron T Beck.

This is another way of saying the same thing that Dr. Norman Vincent Peale said, “Once your perception of an object (or situation) changes, the object itself changes”.  After 37 years of living with autism , I can confirm their statements. I am now “Inspired By Autism”, but it wasn’t always that way. I used to say that PJ was my burden. Then he became my challenge. Now, he is my blessing. Being his mother has been a lifelong education for me. Because of him, I’ve learned that we are never “grown”; that all of life is a learning and growing experience.

Because of PJ I am still coming out of my “comfort zone”. In fact, once you become the parent of a child with autism, is there such a thing as a comfort zone? I am not comfortable speaking to a room full of strangers, but PJ cant talk, so I have to. I am so sorry that I don’t have any answers for autism, but I want to have my say about autism, which is why I speak and write.  PJ can’t do either, so at 70+ years, I am still dealing with the challenge of autism and talking about it.

Thank God that I live in America, where I have freedom of speech. I can share my thoughts and experiences without having answers. A psychologist that I spoke with years ago told me that I might have to learn to live without answers. I am still trying to do this. Even when I get an answer, it is not the right answer for PJ.

I wonder if he could talk, what would he say? The only time you can get a conversational response from his is when you mention the word “Disneyworld”.  Then he will say a few words, “Mickey  Mouse, Donald Duck, ride the train, water.” He will say these words over and over until I am sorry that I mentioned it since we are not going to Disneyworld and I am not sure if he understand that.

I saw a teen-ager named Carly who is handicapped by autism. Carly was on “The Doctors” TV show this week.  Carly has apraxia, which is the same condition that PJ has, so Carly doesn’t talk either. However, Carly writes. She has written a book and writes a blog called “Carly’s Voice”.  Seeing her was such a revelation because there is so much more to her than meets the eye. Her father and her therapist had been working with her for years using a picture board and got so much more of a breakthrough than they were expecting.

Carly uses the computer to write and is intelligent and eloquent. She explains a lot about autistic behavior.   Carly says, “Autism doesn’t define me, I define autism”. She proceeds to do just that. She explained the stims of people with autism and why they do it, but she goes even farther. She says that a lot of typical people stim, too. We tap our feet, tap our pencils, doodle, pace, etc. Since our behaviors are considered appropriate, it is not called stims when we do it. People with autism have  stims that don’t look socially appropriate  and that  is why they get so much attention.

Carly explained being overwhelmed by her environment and how she reacts to it.  (This is something that all autism parents are familiar with.  This is a reason for a lot of inappropriate behavior in our children).  The doctors had asked her the questions ahead of time so that she would have enough time to type the answers. On the show, she appeared to be totally autistic and the only thing that she communicated during the show was that she wanted a coke in a can. She did this by using a talking picture board.

After seeing Carly, I wonder how many more people with autism have so much more to share than they appear to. How many more people with autism could tell us how they feel as eloquently as Carly if they had the right interventions, PJ included? I try to console myself with the fact that we all did our best and that was all we could do.

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

Claudreen Jackson

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A Group Home Picnic – 2

Posted on August 31, 2012 by claudreenjackson

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

Last year I wrote about the wonderful group home picnic that PJ and I had attended. The picnic is an annual event held by Bennett Care Homes. Reverend Germany Bennett and his wife, Kimberly Bennett run a number of group homes and PJ has been a resident of one of the homes for the past few months. They really fulfill the PJ Foundation guiding scripture  with which I began this post.

This year, the picnic was in the same location, but was even better than last year’s picnic.  We had wonderful food; hot dogs, hamburgers, bar-be-cued ribs, macaroni, potato salad, corn and green beans.  There was soda pop and ice cream. PJ was only interested in soda and hamburgers, but his mom enjoyed the full menu.

The Bennetts had a children’s petting zoo with lambs, goats, chickens and  turkeys. There was even an alpaca (which I thought was a llama until I asked). Young children in the neighborhood were invited to enter the yard and pet the animals. This is a picnic for neighborhood residents, as well as group home residents, so all are invited.  The children really enjoyed the petting zoo, but PJ was not greatly interested in the small animals, though I tried to interest him.   There was also a trampoline and one of the bouncy houses to keep  young children entertained.

PJ was interested in the horse, though.  The Bennetts even provided  horseback rides. There was the calmest, most beautiful horse whose owner was giving horseback rides to everyone; old and young, disabled and able-bodied alike.  PJ rode the horse and I took pictures. (If I were more computer literate, I would include the pictures in this post, but it’s all I can do to write the blog). Seeing the small animals and the horse in the middle of the city of Detroit was a special treat provided to us by the special people who care about our special people.

Once again, there was a  great band and a disc jockey who kept us entertained.  We even managed to get PJ to sing (sort of). He sings with his sister, Stephanie, and he really has a great voice. He cannot sing most  words, but the melody is clear and correct. When he wants to sing , he does a great job, but he  did not put forth the effort that he is capable of at the picnic. With him, you never know what you might get.

When I was active in the Wayne County Chapter of the Autism Society of Michigan, we had PJ scheduled to sing with his sister at one of our events. My thought was that since the event was all about autism, that whatever PJ did would be  acceptable. When PJ and his sister took the stage to sing, PJ turned his back to the audience and to the microphone, so you couldn’t really hear him. That’s the reason that I never really pushed his singing.  He is not interested in fortune or fame, so he only sings when he feels like it and he only sings the part of the song that he likes. No singing on cue for PJ.

I am so thankful for people like the Bennetts. Parents can not do it alone, especially parents my age. That is why we formed the PJ Foundation, to offer parent support.  I am so proud of all you parents who deal with the daily challenges of raising a child handicapped by autism.

“And let us not be weary in well doing; for in due season we shall reap if  we faint not”. Galatians 6:9.

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

Claudreen Jackson

 

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Ghetto Child

Posted on August 5, 2012 by claudreenjackson

I have mentioned before that my husband Pervis Jackson was a member of the Spinners, an award winning singing group, originally with Motown Records. Ghetto Child is the name of one of their recordings. I am including some of the words to the song because they seem so appropriate for our situation as parents of a child with autism. PJ doesn’t talk, but some of the higher functioning people with autism that I have spoken with have expressed these same sentiments.

“They used to laugh at me / Children called me names. / I would run and hide / feeling so ashamed / just for being born. / I was just a child / punished for a crime/ that was not mine. / Life ain’t so easy / when you’re an autistic child”.

I substituted the word “autistic” for the word “ghetto”.  In 1987 and 1988 when I was hosting a cable TV show that focused on autism, “Ghetto Child” was my theme song. (I wish you could hear the melody).  The show was titled “My Piece of the Puzzle” because I had no answers, only pieces of the autism puzzle. I was trying to increase awareness because there was so little information about autism during that time. I felt the words so strongly and I was glad that PJ did not feel them.

The media and the schools are paying more attention to the bullying problem now that it has become even more widespread. People with autism who were mainstreamed  and who could express themselves talked about being laughed at and bullied . That’s one of the reasons that I was comfortable with PJ being in a school that was for people with autism. It was called a “center based program”, but the mainstream advocates referred to it as a “segregated facility”.  I knew that PJ could not tell his side of the story  if anything happened and I was afraid that he would not become more aggressive if he were bullied.

I wasn’t the only parent who felt that way. When the “segregated facility” was scheduled to be closed, the parents banded together and campaigned to keep it open. They wrote letters and testified at hearings and worked hard to achieve their goal. Though I did not believe they would be successful, they managed to keep the school open and it is still operating today.  Another example of Democracy in action.

I felt that it was a good school and that the teachers were dedicated to doing their best with our challenging children. They even gave the parents their home phone numbers and made us welcome to call them if we had any concerns or questions. I appreciated this so much that years later, when I became a teacher I did the same thing for the parents of my students. No parent ever took advantage or became a pest, nor did I.

I realize that a lot has changed since then because of the increase in the autism diagnosis. I don’t know if there is a “perfect “solution for educating those on the lower end of the spectrum. I have seen students with autism in regular education buildings who were supposed to get support services.  I have seen them get too few supports or inadequate support. I have seen teachers with too much to do in the course of the day to give each special education student all that they needed.

I think that all parents do what we feel is best for our child with autism. There is no one size fits all solution in our situations. We just keep on doing our best and following our hearts as advocates for our children.

Until next time; May the Light of God surround you and may the Love of God enfold you.

Claudreen Jackson

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The Big Ticket

Posted on July 19, 2012 by claudreenjackson

The Big Ticket Classic is a golf event that happens every year.  It is played by some of the top golfers in the city and I am honored that they are supporting  the PJ Foundation. They have been donating a portion of the proceeds to the foundation since our beginning in 2009.

This is something new for me because until this classic, I had never even been on  a golf course. This is the third year of PJ and me attending the event. I love the golf course but I do not want to play. No way was I going to embarrass myself in front of these serious golfers.  I did ride in the golf cart to see the signs that people had sponsored for us.

The event was held at the beautiful Pontiac Municipal Golf Course.  After PJ and I toured the course, we remained in the club house.  It was almost empty at the beginning of the day, but began getting more and more crowded as the golfers came in after the first nine holes or after they finished their game. There was much greeting, laughing and talking.  I was worried because PJ does not always like to hear a lot of loud conversation.

I was so proud of him! He was on his best behavior for 90% of the time. In fact, he was so good that people were asking me if he was there. Time was, you knew when PJ was anywhere because he always got a lot of attention. He was either in constant motion (sometimes inappropriate) or so noisy that he could not be missed.  I was always afraid to take him anywhere because it was way out of my comfort zone. I  was very uncomfortable with the stares and remarks that we always got because of his autistic behavior.

It is still out of my comfort zone, but taking him  out in public is so much better than it used to be. He is starting to fit in (almost). He seems to want to fit in.  He  ate hot dogs and fries and drank soda and seemed to be having a good time. (Part of the time he sat with his face to the wall and his back to the people in the clubhouse).  He would occasionally get up and walk around but didn’t bother anyone except me. It was a long day for him but he maintained control.

My thanks to all the golfers who participated. One of the things that I have learned since becoming PJ’s mother is that there are a lot of good people in the world.  People who want to support and help others.

This Sunday, July 22, we have another event. The Locker Room Lounge on Livernois in Detroit is having their annual car wash to raise money for the foundation. The Locker Room  has been fund raising for autism for more that 25 years and I am very grateful to them. I am not as concerned about his behavior because this will be a much shorter day and we are much closer to home. The car wash will last from noon to 6 p.m.  If you are in the area, come by and say hi and get your car washed.

The PJ Foundation is grateful to all of our supporters. We can’t do everything for everybody, but we can do something for somebody. That’s why we say “a spoonful of comfort”.  A spoonful is the minimum amount of sustenance that we can share.  I know how much of a struggle it is to raise a child with autism or any disability. I wish we could do more to help all of you parents. You are all my heroes and I have learned a lot from you.

You do not have to write a book or form a foundation to offer “a spoonful of comfort”. We all have a spoonful of comfort. If you know someone who is the parent of a child with autism or any other disability, can you see what you can do? You can offer to make (or buy) dinner for the family once  or twice a month. You can offer to take the family to the park for a few hours. If you are a family member, you can offer to sit  with the child so that the mother can run errands in peace.

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

Claudreen Jackson

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The Best People

Posted on July 12, 2012 by claudreenjackson

If you are wondering who the “best people” are, look in the mirror if you are the parent of a child with autism or another disability.  In the 37 years since I have been dealing with autism, I have met some of the best people in the world; parents of children with disabilities and people who work with our children. I have been uplifted and inspired by many of you as we struggle with our challenging situations with our children. I have been inspired by the adults with autism that I have met who have overcome their condition.

Maybe we parents don’t always feel that we are the best we can be, but I know that we all try. They say that when you don’t get what you want, you get a learning experience. What a learning experience we have had! We all want what is best for our children and sometimes we don’t even know what that is. I read something that has helped me tremendously; “The Desire to do right carries with it a great power. You are in harmony with the Omnipotent Plan of the Universe”.  If you are doing what you think is right, then you are doing your best.

There are no easy solutions to our autism challenges. There are no quick solutions. There are many times of parent panic, but we continue to grow as we help our child to develop whatever potential he or she has. If you are struggling with a child handicapped by autism, you are earning your star in Heaven. Another of my favorite scriptures is Matthew 25:40; “As ye have done it unto the least of my brethren, ye have done it unto me”.  This is the motto for the PJ Foundation.

Of course everyone who works with our children are not the best people. I just saw another TV show about a treatment facility in Massachusetts that uses electro-shock therapy for children with behavior disorders. The doctors who run the facility were trying to rationalize and explain why this is the best therapy for severe behavior disorders. They said it was much needed and necessary. I disagree! PJ was extremely self abusive, hostile and aggressive. There was a time when I might have felt that they were right. Thank God that I live in Michigan where we have more humane methods of handling behavior disorders.

The show was very painful for me to watch as they administered this treatment.  It was painful for the parent of the boy getting the treatment. The mother said that her son was catatonic after the treatments and had never been the same since. The children wear backpacks with electrodes that give a shock to the student when misbehavior occurs, sometimes many times per hour. I am dismayed that this is still going on. I thought we were progressing past that, but they are finding more effective ways to deliver these shocks.

I know that the facility has been using these treatments for more than 35 years. Where are the people who were given these shocks 30 years ago?  What are they doing now? Were they cured and did their condition improve? I would like to know the answers to that.  I would like to hear from them. The only person that I saw who had the treatments and would talk about it said that they were torture.

I am sorry to learn that some parents think that this is the only solution.  I know that there are more agencies offering services to our children than when PJ was younger.  There are more agencies offering positive, humane services. Thank God for them!

PJ is far more pleasant and agreeable than he was as a child.  He is still handicapped by autism, but he no longer abuses himself or anyone else. He does not want to hurt anyone. With the combination of medication, behavior management and teaching, he has learned to control his impulses. Now he wants to follow directions and does not fight against being told what to do. I am so glad that I never thought that electro-shock therapy was my only answer. I believe it would have made his condition worse. Mine, too!

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

Claudreen Jackson

 

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He Ain’t Heavy

Posted on June 30, 2012 by claudreenjackson

The road is long, with many a winding turn / that leads us to who, who knows where? who knows when?/ But I am strong, I’m strong enough to carry him./ He ain’t heavy, he’s my son.

These are the words to a song that inspired me many times in my autism journey. (I changed the word “brother” to “son” to make it apply to my situation).  I am sure you know that I was not always strong and sometimes he was heavy, so heavy that some days I didn’t know if I could make it through the day. There were days when I felt it was impossible to show him any attention of affection. He was wearing me out.  But now, at age 73. I can see where the road has led us. I am now strong enough to carry him.

I was forever pushing myself. Bishop TD Jakes said “If you don’t feel it, do it until the feelings come.” (Fake it until you can make it), so I did a lot of faking and pretending to be the mother that I thought I should be. And, lo and behold, one day the feelings did come. I did become the mother that I wanted to be. Of course, when you have a child with autism there is never enough that you can do. I had to learn that some things were out of my control. I could not make PJ learn or behave above the level of his ability.

Bishop Jakes also said that your situation does not have to be your world. Your world is bigger than your situation.  He said that through our disaster, our strengths are developed; that pain gives you conviction about your Purpose. He said that what you think is working against you may be for your growth. He was right. But if I were choosing a Purpose, it would not have been autism. Many times I did not believe those words, but I was faking it until I could make it.

Dr. Norman Vincent Peale said that the secret of life is not what happens to you, but what you DO with what happens to you.  So just short of me becoming autistic myself, I decided that what I could do was speak for my son and try to make conditions better for him. We are such a “survival of the fittest” society that some of us tend to look down on those who we feel are “less than”.  PJ was constantly looked down on. He didn’t know this, but I did and it was very hurtful. So hurtful that for two years I did not take him out of the house unless I had to. With the increase in the autism diagnosis, I hope things are better for parents today.

I was so full of fear. Fear for him, fear of him, fear for the future, fear for the present, fear that I would not survive autism, fear that I wasn’t making the right decisions. I daily read one of my favorite scriptures , II Timothy 1:7: “For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.” Dr Peale also said that there is only one force more powerful than fear and that is faith. When fear comes to your mind, counter it with an affirmation of faith. He also said that love overcomes fear. Dr. Peale is one of my heroes that I talk about in “Inspired By Autism”.  My heroes have been instrumental in helping me adjust to my son.

PJ is now 37 years old and I can finally say that “He ain’t heavy”.  Recently he has been spending a lot of time in a group home and we both seem to be adjusting quite well. My home will always be his home, but I am past 70 now and want to feel that he will be taken care of if something happens to me as suddenly as it happened to his father. I can’t pretend that I will live forever, or that others will care as much for him as I do.

Until next time; May your Faith and your Love overcome your fear.

Claudreen Jackson

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Caregiver Fatigue

Posted on June 14, 2012 by claudreenjackson

Before I talk about caregiver fatigue, I want to mention that my computer was hacked, my facebook page and e-mail were hi-jacked and I could not receive or send e-mails. The perpetrator pretending to be me was asking for money and who knows what else they did.  I had to pay a company to straighten things out so that I could  get back on track.

Part of our fatigue when we are a caregiver is that we have all the same problems as everyone else, along with our responsibilities to our loved one. Some of us parents of adults with autism are also caring for aging parents. That is why we have to be aware of the stress that we are under and to try to be a caregiver for ourself sometimes.

Fatigue is defined as extreme tiredness from prolonged physical or mental exertion. We become exhausted. We have feelings of anxiety and depression. We feel depleted.  As parents of children with autism, we become part of the 65 million Americans who are caring for someone who is disabled or elderly.  That is why it is important to be able to ask for help when we need it. We don’t like to ask for help. One of the hardest facts that I had to face was the realization that I would always need help because of my son’s condition.

I tried to go it alone and just five minutes short of  me becoming autistic myself, I realized that if I were going to last long term, I would need help. I have been burned out, worn out, washed up, used up, fed up and deep fried. Many times I felt like I couldn’t make it anymore. I had been pushing myself and pushing myself and pushing myself and trying to push PJ (who does not take well to pushing) and realized that I could not go on like that.

That’s how I know that we need a support network. My first support network was my older children who were available (sometimes reluctantly) to help with PJ. If you don’t have a support network, then you really will go through caregiver fatigue. That is why we started the PJ Foundation (pjjraf.org). We can’t do something for everyone, but we can do something for someone. That’s why we say ,”a spoonful of comfort”.  A spoonful is the very minimum that we can give and you don’t have to write a book or start a foundation to offer a spoonful of comfort.

I hope there is someone in your life who can give you a little comfort. Whether it is a respite break by sitting with your child for a few hours, cooking (or buying) a meal for your family or helping with shopping and chores. If you are not the caregiver, but know someone struggling with a loved one who needs constant attention, please consider offering them a little respite. A little respite can go a long way.

As parents of children with autism, we are under the extra pressure of trying not to miss the “window of opportunity” during which our child can be taught enough to recover from autism.   We need a team of professionals to help with this project and most parents can’t afford this. So then, we have the feelings of guilt that we are not doing all that we can to help our child.

I had to rely on all my Re words.  Try to remember the Re  words. Relax– restore–  repair- refresh–recharge– so that we can recover–readjust–renew– regroup –recreate. If you are under extraordinary stress, you don’t have the energy you need to reach inside yourself and your body can get overwhelmed and this may affect your health.  You may need help with this as I did by taking stress management classes and arranging respite breaks.

I will leave you with another of my favorite scriptures: Matthew 11:28, “Come unto Me, all ye that labor and are heavy laden, and I will give you rest”.

Until next time: May you have Respite, Recharging and Renewing  time in your life.

Claudreen Jackson

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Autism Conversations

Posted on May 28, 2012 by claudreenjackson

In the 36 years since I have been a part of the autism conversations, I have  read and heard much about autism. Some information that helped and some that didn’t.  Information about gluten free diets, infusions and medications. There has been conflict and controversy at times because parents, families and professionals don’t always agree on treatments, services and information.

When I first ventured out of my house to try to answer some of my questions about autism, I found much disagreement among parents. I was on the state board of directors and asked Bill Walsh, who was our executive director why there was not a Wayne County Chapter of the Autism Society of Michigan. Detroit is in Wayne County and it is the largest city in Michigan. He told me that I should re-activate the chapter that was no longer meeting.

As I re-activated the chapter, I found out why it had been discontinued. Parents were angry with each other about previous disagreements. Meetings were filled with debates and arguments and it was hard for everyone to get along with each other. I feel that we get so much grief from our children that we should be kind and supportive of each other. I was even blamed for some of the state board decisions that parents disagreed with.

Back then, (the 1970s) the autism conversation was that autism was caused by cold, refrigerator parents. I knew that that did not describe me, but I still felt guilty for being a part of causing my son’s condition. I hope that they are not still putting parents on that guilt trip. Parents were seen as incompetent and I felt that way many times. We worked to get parents to be seen as part of the child’s treatment team.

In the 1980s, the conversation was about Auditory Integration Training (IAT) and Facilitated Communication (FC). IAT consisted of treating the person with autism with a series of  sounds and sound waves that was supposed to help improve their behavior and clarify their thoughts. When I was investigating this treatment for PJ, I found that it was only being done in Toronto, Canada. We would have to be there for at least six weeks while they individualized a program based on PJ’s abilities and behavior. I decided against it, but I would love to hear if it worked for anyone.

In FC, a person, referred to as a facilitator supported the arm of the person with autism as the autistic person typed his or her thoughts. There was much debate about whether the facilitator was influencing  what the person with autism was typing. There were disagreements and lawsuits about the typed material and the practice was supposedly discontinued, but there was a recent lawsuit in Michigan where FC was being used with  a girl with autism.

In the 70s and 80s, many agencies that helped children with disabilities did not accept children with autism.  The autism conversation became trying to get these agencies to accept our people. Our children had a reputation for being hostile, disruptive and aggressive and since that described PJ, I did not try to influence the agencies, but I did try to help increase autism awareness. I could not have predicted how the increase in the diagnosis would help increase services to our children.

The debate about medication was another conversation. In the institutions, many were over medicated and I was afraid of what effects the medication would have on PJ. However, after three nights of neither of us getting any sleep and PJ screaming all night, I told his doctor,  “You’ve got to medicate him or me, preferably both of us.” His doctor understood and gave me prescriptions for both of us. I have often taken medication for my nerves during my journey with PJ. Since I am so old now, I take the medicine on a regular basis. Medicine was created for a purpose. It is people who have abused that purpose.

I decided to write and to blog because I wanted to express my thoughts and be a part of the autism conversation.  I am glad that people with autism are now a part of the autism conversation. That is evidence of how far we have come.  I appreciate what they have to say. We don’t have to always agree. We can disagree without being disagreeable. I love what Pastor Rick Warren says; “We don’t have to see eye to eye to walk side by side”.

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

Claudreen Jackson

 

 

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