Category: Lost in The Spectrum, A Mothers Story of Raising an Autistic Child

Lost in “The Spectrum”: Autism and Mental Health

Our Experience

This is the hardest article yet to write about the story of raising an autistic child. Again, this is ONLY my experience. I’m sure that some autistic individuals may read this and I particularly want you to know, if this does not apply to you, then it doesn’t. This information is about mine and my son’s journey. I never mean to hurt anyone’s feelings. I write to hopefully help others navigate the sometimes daunting world of autism by reading about our triumphs and trials. You know, hind sight is better than foresight.

“Doctors”

As early as the age of 3 years, “well-meaning” church folks were following me outside the church to give me medical advice about how to raise my son. Although they did not work in the medical field, I was “strongly advised” to take Lucas to the doctor and “get him on Ritalin”. He had outbursts that were disruptive in Sunday School and other church activities. I simply was not going to drug my child to make other people more comfortable. When I was not trying to make him conform to the rituals of church activities, he was not nearly as difficult. I decided that I was going to give him time to grow up before making the decision about medication, so as best as I could, I tried to provide him with a safe space to grow into who he was going to be without drugs.

And Other “Professionals”

When the nurse brought Lucas to me in the hospital, after I had held him in the delivery room, I began reading to him. I think that I would have started reading to him in the delivery room but he was born by Cesarean section and I had to just lay there and wait for my incision to be mended, so I couldn’t sit up and hold him. We read to him every day and night and before long, he was reading to us. I am not talking about memorization. By the age of two, he was reading books and newspapers that he had never seen. This is called “hyperlexia” and many autistic individuals have it. As he approached the age for kindergarten, although it was against my better judgement, I put him in a day care facility where he was SOON discriminated against. That didn’t last long. I took him home. Again, I was advised to drug him by non-medical people. I always found it interesting that if I had advised people to medicate their child, as a nurse, I would be in trouble, but non-medical daycare workers could do just that. It made no sense. Although I believe that there is a place for almost all medications, there was no way that I would allow my child to be put on psychotropics at that young of an age. A lot of those drugs have negative side-effects after being on them for a while. If he had to be medicated at some point in his life, I wanted to wait until it was a quality-of-life issue, HIS quality-of-life, not mine or anybody else’s.

As Lucas grew up he began piano lessons at the age of six years. Although he is not a savant, he does have a very special gift in music. He has chromesthesia and perfect pitch. He took to the piano easily but he never really loved it. We had a family member, who is no longer a part of his life, that was adamant about him practicing and drilled him daily to measure his progress. If Lucas ever had any affection for the piano, being pressured to perform changed that. Now, with a beautiful, bright toned, black lacquered Yamaha U3 piano sitting in the living room, and a degree in music, he does not play. Music comes easily, but holds no charm, for him.

Apathy

While he was growing up we went everywhere. We bowled and swam, a lot. He was home-schooled and had to have some physical education so we joined the Y.M.C.A. He had swimming lessons and a bowling tutor. Life was good when we were active. Later I found out that he didn’t actually enjoy any of these things. He just did them because he thought that he had to. He found no joy in the things that most children enjoy.

He did like zoos and as I mentioned before, museums, so we frequented those. In the museums, he pretty much just ran through them over and over, for what seemed endlessly, for hours. He would stop to look at the displays but he was more interested in the pathway through the buildings. Only the animals at the zoos really gave him cause to pause. He has always loved animals. Day trips to these places were the best because then it was just the two of us going. If anyone else went, the day was sure to dissolve into mayhem. I always knew that he had to have space to just be. Other family members always wanted him to conform and I always knew that was not possible. You can’t change an apple into an orange. They’re different. Lucas was noticeably different and I supported him. Although I so wished that he could enjoy some things that other kids loved, I did not expect him to be like anyone else. When I was growing up, I was pressured to conform and it was horrible. Although I am not autistic, I never could just do, or not do, anything just because other people reacted that way. I didn’t expect him to either.

Alone In A Room Full Of People

Something that was noticeable about Lucas was the obvious detachment that he had with his surroundings. He seemed to move through them but never be in them. It had a dissociated appearance. He seemed to be absent from his own body at times. The truth is, I believe, based on things that he has told me, everything in the environment bothered him so much that he just went inside his own mind. He has always been sound and light sensitive and when he looks up, especially at the sky, it scares him. The fear of looking up is called anablephobia. I suppose he has that to deal with also. It infuriates me to think that when he was suffering with all of these issues, all anyone wanted was a pill to make him easier to tolerate. Some might say that maybe those magic pills would “cure” all these unusual tendencies, gifts and phobias. No, they won’t. So much of this is his version of autism and so far, that’s not something that can be changed. He doesn’t want to be autistic, so if I could fix it for him, I would. He completely understands what autism is and he hates it. His place on “The Spectrum” is filled with anxiety.

Progression

After Lucas graduated from college with his Bachelor’s Degree, he went on to the graduate program. In March before he was to finish in May, our house was hit by a flurry of violent tornadoes within about 30 minutes. We had three direct hits and a fourth was coming straight at us but bounced to a nearby town instead of hitting us that night. Our home was destroyed with us in it and Lucas and I separated from his dad that night. There was a lot of tension between them. I went on to be a full-time nurse and Lucas was happier than he had ever been. The constant tension in the household of a couple who could not get along was turning into something that he could no longer bear. I have since found out that those years took a terrible  toll on his mental health. You know, again, hindsight is better than foresight but if I had those years to live over, I would have made that change at birth. I home schooled Lucas because he would have been bullied mercilessly in the local school by students and teachers alike, so I couldn’t have changed that unless I had moved to a major city where better schools were available, but looking back, that might be what I should have done. The point here is this, I did what I thought that I should do at the time. I did my best. That’s all that anyone can ever do. I thought that staying in that relationship where I could stay with him and school him and protect him was the best thing for him. Now, I’m not so sure, because when he was diagnosed recently, the therapist told me that all those years in a difficult living arrangement followed by the destruction of the tornadoes had devastated his mind. Now, at the age of 26, he has a therapist and a psychiatrist. I had tried to get him into therapy for years but he refused. Finally, one day, he looked at me and said, “Mom, I need help.” and he got it. Lucas does take some medicine now, by choice, HIS choice. A decision that he made as a mature adult with autism, a decision that he made to feel better. Slowly, but surely, my sweet boy of long ago is making an occasional appearance. Although I know that we have a long road ahead, it does lead to a better place. He has some peace. When he was little and  people would ask, “What do you want him to be when he grows up?” I would answer one word, “Happy.”

I think we just might be getting there.

 

 

Lost In “The Spectrum”: The Joy of an Autistic Child

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Again, I must remind you, this is MY EXPERIENCE ONLY. Autism is different for everyone. I never want to hurt anyone’s feelings. I’m just being real.

Everyone knows that autism can be daunting. We all know that it tries our nerves and patience at times. It’s so frustrating to put everything that you’ve got into a child only to feel like it didn’t help them at all. It’s mind-numbing to try to comprehend that regardless of all of your efforts, your child is still autistic. While you may say that autism is not something to be corrected, I always wanted my son to have what we think of as a “normal” life. I wanted him to have friends and a girlfriend. I wanted him to get married. I wanted him to drive willingly and get a great job and be financially secure. It scares the Hell outta me to think about dying and leaving him at the mercy of the World. I have to stay real healthy.

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Having said that, I must also say that there are unique joys in raising an autistic child. Parents of average children have many of the same frustrations that we do but while they have the typical milestones that we long for, they don’t have the unique perspective of autism in their view of life. I absolutely love the fact that my son has never bent to peer pressure and can’t imagine caring what anyone thinks about anything he is, does, thinks or says. I love that independent, “So what?” attitude. Other parents spend endless hours putting emotional band-aids on their kids when they begin to grow up and venture into the World. We don’t. Our kids reject the notion that anyone’s opinion other than theirs is even remotely important. If someone rejects them or laughs at them, it’s usually meaningless. While they are targets for bullying, bullying is not particularly effective on them. They will usually either just walk away or end it quickly. By the time we find out what’s going on, it’s over. I love having a child that can’t be successfully bullied. You have to give a damn about what someone thinks for them to effectively bully you. My son couldn’t care less.

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I believe that all parents go through a stage when their child is young where we think to ourselves that we wish that they would stay little for a long time. I remember one night when I was putting Lucas to bed, I was praying for him as I did every night. In my prayers, I  remember asking God to “keep him little for a long time.” I know, it’s selfish and stupid, but I so loved my little one. I dreaded the time when he would be at the mercy of the World that had dealt harshly with me. Everything in me longed to protect him. I knew that as long as he was little, I could. I already knew that he was unusual, that he would have difficulties that were greater than mine. This article is not about me, so I will just say that even though I should have had a very sheltered, easy life, there were circumstances that had made it more difficult. I simply could not imagine life more difficult. Later, when I realized that Lucas certainly would be “little for a long time”, I realized that in many ways, God had given me exactly what I asked for that night. Those of us who enjoy nurturing others, have someone who needs that nurturing. Even though this is something that no one talks about, it is real. While there is NO WAY to make someone autistic, like people infer because we hover and dote on our children, it does seem that quite often, we are paired with these children who need natural nurturers. The task is daunting, but we always feel needed. This is in no way intended to fuel the lie that mothers are responsible for autism. That is a lie out of Hell. Anyone with any knowledge of autism knows that no one is that powerful. Autism is an all-encompassing disorder that affects every aspect of a human being. An autistic individual is different from the ground up. Many of these differences are wonderful but they are all difficult for them to navigate and they need our unique gift of care giving. They give us purpose in a World where that can be difficult to find.

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When our children are happy, their joy is pure. It transports us back to our childhood. Non-autistic adults derive happiness from sources different from our kids. Our kids can be joyful in the moment with no thought of the past or tomorrow. They don’t need recreational drugs or alcohol to arrive at this moment of joy. A funny memory or anticipated new purchase can bring about smiles for miles. Their laughter is spontaneous and intense. Sometimes when Lucas laughs, I remember moments from my childhood where I almost got in trouble for laughing. You know, those times when everyone was silent except you and your best friend but you just couldn’t stop laughing. I even remember getting my Mother in trouble when I was 11 years old because my arm was stuck in the back of a dining room chair at the home of the  Chairman of The Board of Deacons in my Daddy’s church. Our laughter was uncontrollable and inappropriate and Lucas transports me back to that time. Location or appropriateness has no bearing on the laughter of my autistic son. In a World where almost no one laughs or smiles, he is a source of spontaneous joy.

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Our children really do have unusual gifts and talents sometime. While Lucas is not a savant, he knows things that broaden my horizons and teach me things that I might have otherwise forgotten or never known. When he was only 6 or 7 years old, he referred to “that purple sound” in the theme song for “Barney the Dinosaur”. I stopped in my tracks. I looked at him incredulously and began to question him. He assumed that everyone knew the color of various sounds. Most people are unaware that sound and color both have Frequency. Frequency is the link between the two. Lucas informed me that “All C’s are green.” I have discovered that this is different for different people. Lucas sees green for C’s, someone else may perceive a different color, depending on the source of the sound. The name for this gift is Chromesthesia, sound-to-color synesthesia where sound automatically evokes an experience of color, shape and movement. It’s real. It’s hard science. They are NOT crazy. If I had not known Lucas, I would not know chromesthesia. I had heard of it but had never been around anyone with it. When Lucas went to  college, he had a teacher with this gift. As far as I know, she is not autistic but it’s entirely possible that she falls somewhere on the spectrum. These children open our minds to so much!

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Have you ever been on vacation with other adults who somehow manage to make a great trip merely another day? I can promise you that you won’t have that experience with an autistic individual along. While some of our kids are difficult to take anywhere, when we do muster up the courage and resources to travel with them, the trip will be anything but boring. It’s unbelievable how the average adult can look at a glorious display of nature, or even man’s talent, and see nothing. An autistic individual sees the wonder in it all. While they may not be able to communicate what they are experiencing, when and if they do, in any fashion, your eyes and your heart will be opened. I remember staying in the aquarium in Gatlinburg, Tennessee for EIGHT (8) HOURS because Lucas simply would not leave. This aquarium is massive and has sharks and all kinds of marine life. The building is very user friendly so that you can move around from one exhibit to another in more than one way. There are inter-active displays and souvenirs. Lucas could not get enough of that place. So often, people spend money for their families to go to an attraction during vacation and they walk through in 30 minutes at the cost of hundreds of dollars. We got a full day and a complete education on marine life that day. The real kicker came on the way home when Lucas talked about, or mimicked, the narrative that we heard over and over.  I can answer about anything you want to know about the ocean now. Fifteen years later, I remember that day with delight. Had my son not been autistic, I would possibly not even remember going to that aquarium. It would have been a non-event. The same is true of many other museums and art galleries. We always got our money’s worth. If you have an autistic child that you can take out, you might want to try museums and aquariums with them. They seem to love the order and detail that goes into the displays. They also seem to enjoy the orderly system of the walk-through. Be prepared to be there a while and have money for the souvenir shop because I promise you, they will want the biggest, most expensive offering that the shop sells. Just buy it, you will never regret those days.

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Last but far from least is something that I refer to on more than one occasion. While Lucas has cousins that have lived a large part of their lives in jail or rehab, he has not. The young people who are highly social can do some stupid stuff to impress their friends. Autistic people don’t see the need to impress anyone. The boys don’t normally drink and drive and father children at 15 and the girls are not quick to chase after boys and have a baby while they are still a baby themselves. As a matter of fact, many autistic individuals are asexual, with little to no sexual behaviors whatsoever. While you would not choose for your child to grow up without a family of their own, this trait can certainly keep many of them out of a lot of trouble. Lucas has never understood why anyone would ingest drugs or alcohol. He understands the use of prescription medications but is highly intelligent and immediately sees the dangers of illegal drug use. He understands the legality of the issues around marijauna. One time when he was abandoned by a professor that he rode with to a music event, he had to ride home with other college students. A girl fired up a pipe and starting acting crazy while she drove down a dangerous mountain. When I picked him up at the college, he was furious, stating that he would NEVER go to anything like that again. From then on, I always drove him, sometimes hundreds of miles. I would do it all again. He has a drivers license and is an excellent driver but simply hates to drive. I consider it an honor to chauffeur a young man of such high standards, especially since he’s my son. If you have an autistic child, they may never be in the trouble that so many others accept as a normal part of becoming an adult. Jail, unplanned pregnancy, drug abuse and alcoholism are not a good part of the adult experience and you will most likely never have these heartbreaking experiences with your child. I have relatives who tried to infer that Lucas’s problems are my fault. I have asked them to explain what happened to their kids.

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While the difficulty level of raising our children is higher than that of some children, they are worth it. They have high standards, high intellect and tremendous capacity for joy. Absorb that energy. It will give you life.

Lost In “The Spectrum”: The Illusion of Milestones

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Not My World

Oh, my goodness! I do wish that I had a dollar for every time that I heard, “Well, he’s X years old now! You need to stop doing so much for him! He needs to take care of that for himself!!!” or, “Well, he should be doing X by now!” I’ve got to tell you, in the beginning, it really hurt, a lot, but as the years wore on , I developed the attitude that “Well, if a frog had wings, he wouldn’t bump his butt when he hopped.” Guess what. That’s not the way it is. Welcome to my world.

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Early Milestones

I remember so well the day that my Mother looked at me and said, “Brenda, you need to set him up in his stroller. He should be sitting up by now. If you don’t do that, he never will sit up.” Well, it seemed odd to me. I really knew little to nothing about babies but honestly, I thought that any living thing would naturally grow and begin to sit up or roll over or crawl or walk as the time unfolded for that to happen. I did begin setting him up and soon, he started sitting up on his own. It was a little late… I just accepted that it was my fault like almost all of the Mother’s of autistic children do. Almost everyone implies that all of our children’s difficulties are our fault. We usually just silently accept our psychological flailing and move on. Over time, we feel responsible for every bad thing that happens in the entire Universe. Interesting, if we were that powerful, we would be a god.

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Playtime!

Lucas had never been too interested in rolling over or playing with the lovingly chosen crib toys that I had selected and bought. I was so excited to be getting this baby! I had not had the desire for a child until I was 35 and the odds of still having one were pretty slim and yet, here he was! I was in awe! The entire time I was carrying him, I was preparing to be the best Mom in the world. His crib toys were intended to stimulate him intellectually while still providing endless hours of playtime. I ordered special, expensive toys. I’m not sure why, because once he got here, he was seldom in his crib. He cried endlessly if I put him in there almost from the moment he came home. He simply would not be alone. I tried letting him “cry it out” one time. It was absurd. From that moment on, he was in my arms or on my hip. I learned to do everything from cook a meal to water my flower garden holding my baby. Of course, when he wasn’t crawling, it was my fault for holding him too much… Truth is, a lot of autistic babies never crawl. When they get ready, they just get up and walk. That’s what Lucas did. At 10 months he took his first steps but didn’t walk again until he was about 1 year old. People were slightly obsessed with the fact that he didn’t crawl, again, my fault.

Earlier milestones such as smiling and copying facial expressions were on time but the fact that he seemed uninterested in most toys was unusual. Most babies start making some verbal progress at about 6 months by making “ah” or “oh” sounds. Lucas did these things so seldom that if he did, it was a real surprise. I remember when he was 12 months old, he said “BOM”. Nobody knew what he wanted except me. He wanted a “B”ottle “O”f “M”ilk. At 12 months, he was a little behind in his speech and the trend continues to this day. Communication is so difficult for him, even after graduating from college, that it’s a handicap. Interestingly, he could give excellent presentations in college and get good grades. The reason is that a presentation is not true communication. It is a presentation of facts which autistic people are sometimes very good at. It doesn’t require nuance and perception of the feelings and thoughts of others, just the facts, and Lucas remembers facts.

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Early Skills

Babies usually point to the things that they want at about 9 months. Lucas did not. Much later in life, at about 10 or 12 years, he found his “point” and I was thrilled. He had never done it before. Neither did he look where I pointed until about the same time. It’s a small thing but it is a bigger part of the human experience than we know until it’s not there.

Most babies will “help” when you dress them at about 1 year. Lucas did not. Whenever I dressed him, he just lay or stood like a mannequin. He never pulled his arm out of the sleeve or pushed his leg into his pants. It was like dressing a doll.

He never shook, banged or threw his toys like most babies at 1 year. He did not wave good-bye. He didn’t pull up on furniture and always, the message was clear from so many, it was my fault.

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Around 18 months when most toddlers begin to hand toys to others to play, Lucas would have an all-out melt down if anyone took a toy from him. He was not remotely interested in social play. In the church nurseries that he attended, that was always a problem. I was an only child and didn’t really understand the significance of that behavior. I thought that the teachers should make the other kids leave his stuff alone. I didn’t know that the others were beginning to socialize. Some of the others were saying single words to communicate with other children but not Lucas. He was isolated in his own world. When snacks were served, he always wanted to eat with his hands regardless of what the snack was, again, this was a problem. They assumed that he ate like that at home. He did not. I bought expensive children’s utensils and he used them. What I didn’t understand was that he was beginning to lose some skills already. A lot of autistic children acquire skills only to lose them very soon. It’s hard to watch them lose ground but so often, we do.

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About 2 years of age, when other children were getting excited to be around kids, he was not. He didn’t want to be left with groups of children. He wanted the familiar, his room, books, T.V. shows, games and Mom. He didn’t seem to understand why I was “abandoning” him to rooms full of children. It never went well.

When he was 3 or 4, I became aware that other children were dressing themselves! I was shocked! No matter how many times I showed him how to put on his pajamas, he just would not do it. It seemed to confuse him. He seemed to simply not understand the process, so I would dress him myself. This was the case for years. Finally when he was just getting too old for Mom to be dressing him, I just told him to do the best he could and left him to it. It took FOREVER! I had to allow as much as an hour for him to get dressed. It made us late everywhere we went. No matter how much time I allowed, there would almost always be an argument because nobody understood how hard it was to get an autistic child ready to go anywhere and they would be mad when we finally arrived. I well remember my grandmother’s anger at Christmas when he was 2 years old. He had fought me relentlessly that day. He didn’t want to get dressed and certainly didn’t want to leave home. He had some new stuff and going to Maw Maw’s seemed absurd to him. Leaving home always took a long time. He always wanted to do “one more thing” before we left.

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Around the age of 4 or 5 when other children were role playing, he did not. I have never seen him role-play. He never played “Power Rangers” or cowboys and Indians or army or anything else that little boys might play. He never pretended at all. He has always been literal minded and that is so obvious in the absence of role-playing play. When he was in college and played characters in musicals, it was a delight to see him in his costume in character. He didn’t have speaking parts but he did stay in character and it was fun to see him enjoy that. The professor that worked with him on that is dead now and I remember her with great affection. She was a strict disciplinarian and enforced high standards on her students. Lucas complied. I remember those as the best days of his college experience. She was a choir director and the choir was formal. He would walk out in his tuxedo with that beautifully dressed group of young people and for a moment, he was just one of the crowd. When the event was over, however, while the others were leaving together, Lucas was with us. Nobody ever asked him to do anything. It was just as well, I suppose. Some of his college “friends” wound up in jail.

One of the most specific developmental milestones that most 5 year olds reach is the desire to please friends or be like them. He has never cared. Again, that’s not all bad. Peer pressure gets a lot of kids in terrible trouble. I have not dealt with that.

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Conformity

About this same time, a family member thought that he should be in sports so I enrolled him in T-ball. Oh, dear… It was a disaster. He hated the hot, black polyester uniforms that baked the children in the hot, humid Alabama Spring. He hated the sun. He hated the noise. He didn’t want to run. He hated his Coach. The family member that had encouraged this nonsense came to one game, saw the Coach dragging my screaming son all over the field to try to force him to conform and never came to another one. I let Lucas quit that dastardly team. It was horrible. I didn’t blame him.

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Wheels!

We were living out in the middle of nowhere in rural Alabama, miles from any grocery stores or doctors when Lucas was about 15. Although I had wanted to move into the small college town nearby, it was looking like it was not going to happen. I was not about to get old and die out there in the wilderness and leave this autistic boy unable to drive. While other 15 year old kids were begging to drive, Lucas absolutely did not want to. I insisted. I asked other family members to teach him and even tried to take him to a driving school. Neither happened, so I taught him. There was more than one day that I questioned my sanity. We did have some adventures! He learned and got his license but he all but refuses to drive. It scares him. We moved into the middle of town to accommodate that. Now he can walk almost anywhere he has to go. There is bus service available and if he chooses to drive, it’s not very far. That special day where your kid gets his license was a non-event. I was thrilled, believing that, with God’s help, I had achieved the impossible, Lucas was mortified, fearing that he might actually have to drive sometime.

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The Dream

Throughout college and for a while afterward, Lucas wanted to get married. He really didn’t understand the concept of courtship or wooing a girl. He has always thought that he would just meet a girl and they would get married. It has not happened and he is sadly abandoning that idea. For many years, I was also blamed for that. Never mind that I taught him to drive, bought him the clothes, talked to him endlessly about how to act in public, tried my best to make him realize that basic cleanliness like having your face washed and your teeth brushed DO matter and even tried to “fix him up” a time or two. Oh yes, let’s not forget about pushing to get him a good, pretty car that he didn’t want and won’t drive… I did all that I knew to do to help him but still got the blame when it didn’t happen.

Lucas is 26 and I still care for my son. I love him with all my heart and think that he’s pretty awesome. He’s highly intelligent and I understand him. If you find yourself facing the wrath of the world because your child, THEIR grandchild or THEIR nephew or niece or THEIR student does not hit the milestones, remind them of the frog. If he had wings, he wouldn’t bump his butt when he hopped. He doesn’t. He’s a frog, exactly like God made him and he’s supposed to bump his butt. It is what it is. Love these kids for who they are. Do your best for them but always remember that they are different, and some of that difference is wonderful.

If you would like to read more of my articles about raising my son see The Angry Baby , Educating My Autistic Son and Take Care of YOU! There is more to come.

Lost In “The Spectrum”: Take Care of YOU

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A Mother’s Life

I remember my mother working day and night to take care of my Dad and me. She was a stay-at-home Mom, but she got up at 7:00 A.M. every day and cooked, cleaned and shopped when necessary, to provide us with a clean, stable home and good, nutritious meals. Although I know that she was tired, she did go to bed at a regular time every night. Our home ran on a pretty tight schedule. No matter how much most parents of autistic children try to achieve that ethereal goal, it almost always eludes them. While the child and Dad may be in the bed on time, quite often an exhausted Mother is burning the midnight oil, finishing tasks that fell to the wayside as she toiled endlessly trying to make life the best that it can be for her child. As a result, the Mothers of autistic children have unique health challenges. Remember, your child does need you, now and much longer than most kids need Mom. Taking care of yourself is also taking care of his/her future. And also, always remember, you are a person too. You matter.

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Necessary Remarks

I will frequently reiterate, this is MY experience. Yours may be different. This is not a complaint about how hard our lot in life is. We are blessed to have children who do not understand peer pressure like some other children do. For the most part, they simply don’t care what others think of them. That’s a good thing. While my son has highly social cousins who have spent a lot of time in jail and rehab due to their social behaviors, he has not. I know other parents who have autistic daughters who have not been in trouble with boys the way that some other girls have. Some things that a lot of other teenagers do, don’t make sense to many autistic kids. This article is not about how bad raising an autistic child is, it’s about taking care of yourself because it is difficult and presents unique challenges that can wear you down. No one can deny that truth.

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Health Risk

As Lucas began to exhibit more and more autistic traits, I scoured the libraries for information that might help him. He’s 26, so there wasn’t much good information available at the time. I was a nurse when he was born and I chose to quit working outside the home and stay with him before I had any idea that he would be a little different from most other children. I didn’t have brothers and sisters and had never done much babysitting. I really knew very little about babies or toddlers, but I did know about autism. At first, I couldn’t believe what was unfolding before my eyes. Autism was not as common as it is now and it was unbelievable that my child was autistic. At first, I was a bit numb but soon came to see it as merely a word. The word had no power. What Lucas could NOT do was unimportant to me. It was what he COULD do that mattered. I labored endlessly to strengthen his God-Given skills, gifts and abilities. He was highly intelligent and creative. He took to the water like a duck. I took him to piano lessons and swimming lessons. I made sure he was in church all the time because church people had to be nice to him, (or so I thought…). I took positions in churches to facilitate his activities in them. I studied nutrition and exercise and psychology and autism. I was frantic and manic in my efforts to “pull him through”. I really believed that if I worked hard enough and prayed hard enough and advocated hard enough, that one day, he would “fly” and be merely a little odd like the “Absent Minded Professor” in the Disney movie. I know that most Mother’s of autistic children do the same thing and in all of this hard work, they fall apart. In “Medical Research Archives” of 2015, the statement is made that raising these children may impact maternal health. (1)

 

Life Goes On

Life and it’s hardships don’t stop or give you a break because you have a special needs child. I was in a terrible marriage and felt absolutely helpless to change it. I wanted to stay with Lucas and home school him to strengthen his already strong points and protect him from the horrible bullying in the local school system. He had cousins who had graduated from that school and it was so bad that even some teachers verbally bullied the kids. There was a special needs child who had been abused and that case was “swept under the carpet” but the parents found out anyway and it became quite the scandal. There was NO WAY I was going to subject my Son to that terrible environment. As a result, I ate to alleviate stress, and just for fun, because believe me, in that house there wasn’t much of that. My ex-husband and I argued almost every day and due to Lucas being literal minded, he didn’t tolerate silliness very well. I couldn’t even be silly when my ex-husband was gone. I had to be calm, quiet and orderly all the time and it was exhausting. I have always been a bit of a “cut-up”. I couldn’t do that…ever. The stress was suffocating. I gained weight and didn’t exercise until I started taking Lucas swimming and then I was in for a rude awakening when I had to buy an “old ladies swimsuit”. I was so sad, sad and tired, very, very tired. I stressed my way to a size 22. During this time, my Grandmother had a health crisis and I was the only family member that could or would stay with her. After 5 weeks in her home, on-duty 24 hours a day, I went home. I felt strange. My blood pressure was 220/120 and my pulse was 39. I should have been dead. I began to change my life THAT DAY.

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The Facts

This is an excerpt from the paper cited below. This is a PDF so if you find this link, it will download on your device. When you click the link, you will go to a page where this article is the 5th article down. Click on that to read the entire study. What the above is saying is that the mothers of children on the Autistic Spectrum without Intellectual Disability have poor health compared to other mothers. We, and in some cases, other Mother’s that have children with ID also, are more likely to die from cancer and heart disease. We have poorer antibody response, so we have lowered immunity. We have more asthma, back problems and headaches. We have more obesity, high blood pressure, high blood cholesterol and diabetes. To top it all off, we have more hot “flashes”. This paper is based on 60 other scholarly articles. There is no getting away from the fact that raising our children exacts a price.

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You’re In Charge

As scary as this is, there is a remedy. You have to prioritize your health. The day that I found myself almost dead, I joined the YMCA and started swimming 2 hours a day, 5-7 days per week. Lucas and I began to bowl. Instead of just “going to the playground”, I found parks with walking tracks and we walked the track. It was also good for him. Previously, although I was always finding activities for us to do, I wasn’t prioritizing exercise. That changed. We both lost weight. Due to the stress in our household and the sedentary lifestyle that we were living, Lucas was also obese.

David has a saying, “You can’t outrun a bad diet.” and no truer words have ever been spoken. Until the revelation that I was eating myself into an early grave and bound to leave Lucas at the mercy of the world, I kept Little Debbie Snack Cakes all the time. I kept them in a fridge on my enclosed back porch, thinking that it would discourage me from eating them…wrong. It was a short trip to my back porch and I made that trip frequently.  I got no support from my ex-husband to lose weight, and he insisted that I continue to buy those snack cakes, so I bought just enough to put in his lunchbox that I made for him every night. When my beloved Grandmother would call and ask me if I wanted the cake that she had just taken out of the oven, I said “No.” She would bake the cake, eat one piece and give it to us up until I began to refuse. She was showing love to us but it wasn’t good for any of us so I stopped it. Here at David’s Way, we provide you with healthy recipes for almost any food that you might like. Just go to the search box on the Home Page and search for whatever you want. You can also contact us through the Contact Button to request a special recipe and we will help you find what you’re looking for. Your life is in your hands. Choose your food wisely.

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Another tenet of David’s Way is “Make Your World Small.” (David Yochim) This simply means to remove negative people from your world. As the Mother of an autistic child, I can testify, everyone is not sympathetic to your plight. If they are not supportive, drop them. Move on. Get over it. Your life will be better and so will your child’s. Those kinds of people will make you unhealthy as you try to move Heaven and Earth to please them. There is a special freedom that comes when you separate yourself from negativism.

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While the challenges that face the Mother’s of autistic children are unique, you can navigate these treacherous waters with finesse. My Son is 26 and moderately autistic. I am 63 and work full-time and lift heavy weights and abstain from sugar and other unhealthy foods. I count my calories, carbs and protein and make my nutrition my first priority. I am frequently the one who is called upon when there is a physical challenge at work. I am happier today than at any other point in my life after many years of psychological abuse by more than one family member. I increased my workout today, adding extra squats and David’s “Burpees from Hell” to my routine and walked my dogs after an hour and a half of my regular weight lifting routine. You can take care of yourself if you make it a priority and if you have an autistic child, it is a priority. Take care.

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https://www.google.com/search?q=health+of+mothers+of+autistic+children&oq=health+of+mothers&aqs=chrome.1.69i57j35i39j0l6.8240j0j7&sourceid=chrome&ie=UTF-8

Lost In “The Spectrum”: Educating My Autistic Son

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“Baby Mickey’s Red Ball”

When I first found out that I was pregnant, I was overjoyed. I had a miscarriage the previous year and being pregnant was an answer to prayer. I made all kinds of plans and had high aspirations about how I would educate my baby. I had always made good grades in school and loved to learn and my ex-husband had also. It was the one thing that we had in common, we were both geeks. We decided that we would read to the baby as soon as he was put into our arms and we did, not in the delivery room, but when we got to our regular hospital room. I had chosen the Disney book, “Baby Mickey’s Red Ball” to read first and as soon as they brought Lucas to me, I read. He seemed enthralled, a little too much for a newborn baby.

As he grew, we both read to him a lot. By the time that he was two years old, he was reading to us. I am not talking about memorization. I am talking about presenting him with reading material that he had never seen before and he read it to us, at the age of two. I had a Great-Uncle who was both fascinated and terrified at this amazing feat. At the age of four, we were visiting with my Great-Uncle and Aunt and Lucas read a newspaper that was laying on the dining room table. I’ll never forget the shock on my Great-Uncle’s face. He was a highly intelligent man who worked for the Agricultural Department and he was astonished.

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The Basics

I was working with Lucas at home because I wanted him to be advanced academically. I was teaching him his numbers and ABC’s. Once he grasped the pattern of our number system, he could count indefinitely. I remember him counting to 200 sitting on his potty for training. He began counting to 300 and I realized that he “got it” and never had to address that issue again. He was two.

Teaching his ABC’s seemed almost ridiculous. He was reading, but he did need to know how to spell, so it seemed to be a reasonable pursuit. Little did I know that he could already spell anything that he wanted to spell. It was very unusual.

This fascination with letters and numbers and advanced reading ability at such a young age is called hyperlexia and many autistic children have it. At the time I thought he was just brilliant, and he is. He is also autistic.

Pre-School

I mentioned his pre-school in my previous article. I had to go right back to the facility within hours of dropping him off at school. He was laying in the floor in the fetal position screaming to the top of his lungs. A few days later, a boy advanced towards him on the top of the slide in the little covered playhouse at the top. The boy was imitating the children’s show, “Power Rangers” and Lucas did not understand what he was doing and pushed him off the slide to the soft sawdust underneath. The boy was not hurt but Lucas was suspended. A few days later they were to convene in a meeting of “The Board” to determine if they would allow him to stay in school. I took him home and told them to forget it. I did not want him in a place where he was not wanted.

Kindergarten

About this time, a friend looked at me and said, “You’re going to home school this one aren’t you?” I desperately wanted to do just that, but had no idea about how to go about it. I knew that he was academically advanced and emotionally behind and that public school would not support his advanced intellect and that he would be bullied relentlessly. The school that he would go to was notorious for bullying by children and staff alike, and there was NO WAY that I would allow that to happen to him. I began to investigate home schooling.

After choosing the curriculum and informing family members about our decision to home school Lucas, I began using the workbooks provided. “Friends” and family alike were in a rage about Lucas being home schooled, as if it was some of their business. They had never watched as he was treated like an outcast by “a good Christian woman” in a room full of “normal” children. They had never seen people laugh when he read the words to a song from the church hymnal, thinking that it was just a memorization. They had never seen a 18 year old boy scream at him in the church parking lot until he ran to the car crying. They only knew that they wanted him to be like other kids. You know what they say, “Opinions are like (body part), everybody has one.” I have also heard that you can wish in one hand and urinate in the other and see which one gets full the fastest.” and “You can’t always get what you want.” as spoken by the great Mick Jagger. People who supposedly readily accepted the will of God in their lives were simply unwilling to accept the fact that the same path is not necessarily the best path for everyone. I home schooled him anyway.

The truth is, we pretty much just jumped right over kindergarten because Lucas already knew all of that. We went right to the first grade studies and the work was incredibly easy for him. By law, you only have to spend a few hours per day in actual studies and even that was not necessary. After he saw the material one time, he had it. The worksheets and tests were a breeze. I had been right, he would have been held back in the public system. Book knowledge came easy for him.

The Grammer School Years

We were able to join the YMCA and swim most days. Lucas is a great swimmer. He took lessons there. We bowled and hiked and took vacations and all the while, his curriculum was with us. We might study in the park one day and at home the next. Those days were the easiest days, not easy, but the easiest. We were not under pressure. Lucas still cannot handle stress well. Home schooling was great for him.

High School

As he neared the end of his mandatory years of study, the work got harder but he still excelled. He took his ACT and aced it with a 27. As a result of that test he was awarded a full Faculty Scholar scholarship to Jacksonville State University where he chose to major in General Music and Minor in Communication, (NOT Communications). Communication studies are mass communication and Communications is more technology oriented.

University

Lucas is a gifted pianist. He had lessons from the time he was 6 years old throughout his life and he excelled in his music. The Communication studies were just as easy for him. He could easily present a paper to an audience of 2 or 200 with no qualms. He was creative and resourceful and used Apple T.V. and Power Point and all kinds of technology to present to his class. He gave personal recitals and played in “Concerts and Recitals” for the staff and students and always got good grades. He graduated with Honors at the top of his class and went on to pursue his Master’s Degree. All of this was on the time table recommended by the University. He got his Bachelor’s Degree in four years and finished the Master’s program in two. It was pretty amazing to see. What no one saw was the endless shopping that I did, buying him everything that his heart desired, just to keep him sane. Those six years cost a fortune. The stress of a State University was too much for this autistic young man and he began to deteriorate mentally. By the time that he finished the Master’s program, he could not even pass the Comprehensive Exams. He walked in graduation but that was all. He never earned his Master’s even after successfully completing the course of study with mostly A’s and a few B’s.

While it is amazing for an autistic child as affected as Lucas is to earn a Bachelor’s Degree and finish the Master’s program, if I had it to do over, he would have never gone to University. His degree seems to be worthless. No one will hire him. He had been a church pianist before going to college at age 16. He did that again for a few months after graduation but he didn’t need a degree for that. The stress of college changed him in an undesirable way. The pressure of keeping his scholarship with high grades, along with the stress of performance and social pressures that he just could not understand, was too much for him. His behavior became erratic. He never thought about his actions before performing them. He became depressed and sullen and the social structure that was foreign to him due to his autism made him feel like a stranger in a strange land. An autistic girl struck up a friendship with him only to end it abruptly when her Mom disapproved. The loss of what he thought was the only friend he’d ever had was too much to bear on top of the rest of college life. He changed from a light-hearted gamer to a sad and lonely young man. He got his degree but lost so much more. He would have benefited so much more from a good trade school where he could have learned to do something useful. As it is, he is unemployable.

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Lessons Learned

As the old adage goes, “Hind sight is better than foresight.” I truly believed that Lucas would “fly” in University. I knew that he was intelligent and gifted. I figured that he would wind up being a geeky college professor like the character in the Disney movie, “The Absent- Minded Professor”. Instead, he had a breakdown. From what I understand, students do occasionally suffer mental breakdowns in college. I know of others who have had that experience who are not autistic. With his limited reasoning ability, he just could not make sense of the whole experience and with academic pressure and pressure at home, which has since been eliminated, he collapsed. Now, I advocate for him to have insurance, some income and a secure future. All that we can do is the best that we know. Nobody is perfect. The thing that I want you to remember is this, “Do your best. That’s all you can do. Your best is not the same as my best or anyone else’s best. It’s YOUR best. We are all imperfect and work with limited resources, both financial and otherwise. Once you’ve done your best, rest. That’s all that you can do.”

Love to all,

Brenda Sue

Lost in “The Spectrum”: Autism and the Angry Baby

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The Beginning

First of all, I want to say that everything that I say in this series of articles about raising an autistic son is my experience alone. I am not suggesting anything for you or anyone else. I am speaking about my experience only. It has been interesting.

I had an easy pregnancy that culminated in a scheduled C-section. It was also easy, no labor, no pain, nothing remarkable. I was terrified at the responsibility that I had brought on myself, by choice. I dearly wanted and loved this precious soul that had been entrusted to my care. I was a nurse but I couldn’t bear to leave my son, and my then husband wanted me to stay at home with the baby, so I did. We moved into the house with my parents shortly after his birth for about 8-9 months and one day I was in my Mother’s upstairs bedroom talking to her, holding Lucas, as usual. I almost never laid him down because when I did, he cried a lot. He didn’t cry himself to sleep. He just cried like he was furious. Since I was thrilled to have him with me, carrying him around seemed completely normal. He had my undivided attention. During this conversation with my Mother, he hit me hard. It was a deliberate blow. It seemed that he did it to get my attention, and he did. My Mother said, “Did that baby hit you?” and I said “Yes, he did.” She said “Brenda, something’s wrong.” I knew in my heart that she was right. It was a strange thing and I had never seen another baby do anything like that.

Expressions of Anger

We were living way out in the country in rural Alabama and I had grown up there, so lonely, so I was determined to take Lucas to town at every opportunity and find something fun for him to do. I took him to “The Imagination Place”, an educational, interactive museum in downtown Gadsden when he was less than a year old. It had displays for every age group and he grew up going there for years. We frequented parks and playgrounds of all sorts. We joined the YMCA and he took swimming lessons. We were always on the go. When he was still just a baby in the car seat in the buggy in Walmart, he would scream so loudly that people would come from all over the store to see what was happening. I always said that there were two kinds of people that did that in those days, the ones (who usually had NO kids…) who said, “If he was mine, I’d wear him out!” and then there were those with DHR on speed dial on their flip phone, waiting to see if I was going to do just that. None of them had any idea of what they were seeing. They just knew that their shopping trip had been disrupted by a screaming baby. In Walmart, he was always screaming. We went anyway. No way was I going to stay at home. Quite often autistic children, and their parents, are lonely and isolated because of the behavior of these kids.

His dad noticed a behavior that had escaped my observation because they interacted differently from Lucas and me. His dad was more physical with him, like men often are with babies. He would lift him up in the air and “fly” him around. He would play with his toys with him and make funny faces. I noticed one night that his dad was making a grunting sound and laughing. When he saw me looking at him he said, “He sounds like he’s mad! If I touch his toys or make a face or fly him around or anything he says “Uh!” like he’s mad!” His dad was making that sound back at him. Again, it was odd. I had never seen a baby get that mad about things like that. His dad’s behavior was appropriate. He was merely playing with Lucas, but it angered him and he was quite verbal about it. I told his dad that he probably shouldn’t make him mad. I didn’t know what to think of the whole thing.

Exclusion and Expulsion

As Lucas grew, so did the anger. We catered to him, spoiling him with everything that we could think of that might give him a diversion. Most of the time, he was content but when we went out, he got angry. Lucas and I accompanied his paternal Grandmother to a doctor’s appointment in Birmingham, Alabama at The Kirklin Clinic one time. The drive was not pleasant and neither was the company. My Sister-In-Law had brought her son who was two years older than Lucas and they didn’t get along. By the time we got to the Clinic, Lucas was fit to be tied. As we sat in the waiting room, he became hyperactive and when I tried to keep him from bothering the other people in the room, he screamed, loudly and for a long time. We were thrown out of The Kirklin Clinic.

About that same time, I took my 14 year old step-daughter to a teen line-dancing party one night at a teen club. Lucas would not stay off of the floor and screamed like a banshee when I tried to keep him off of it. There was a rule about the age at which children were allowed on the floor and two was underage. It was to keep them from getting trampled. As he screamed and screamed, he upset the whole building and again, we were asked to leave.

At the age of 3, I reluctantly enrolled him in daycare. I had a bad feeling about it. I left the church in tears and went home. In about an hour, the head of the daycare called me to come back. Lucas was lying on the floor in the fetal position, screaming. I took him home and day after day, took him back and sat in the hallway waiting until the inevitable meltdown. It always came. Then one day another boy aggressively approached him on the top of the slide with moves from The Power Rangers children’s show. Lucas didn’t know what he was doing, and as the boy swung wildly at him, Lucas pushed him and the boy fell to the ground, unharmed. It was a short fall onto sawdust, but it got Lucas into trouble. At the age of 3, he was suspended from daycare until the Board could meet and discuss whether or not to allow him into their facility. I said “Never mind.” and took him home. I did not want him to be in a place where he was not wanted.

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Pardon the condition of my picture. It survived a tornado.

The Chosen Path

There were many instances of exclusion and expulsion. He was seldom included in other children’s plans, never invited to a party and never, not one time, ever asked to come over to another child’s house. The behavior of the adults in our lives was horrendous. Only cookie-cutter children were given those privileges and Lucas was not a cookie-cutter kid. He was autistic and he was ostracized. My heart broke for him. Although he was autistic and did not understand social norms, he still had the heart of a child and wanted to be with other children. I must say that the love for my child kept me in church for years, because church was the only place that had to accept and include him. I did every job that you can think of in churches while he was growing up. It gave him a circle of friends that were taught to love others. Some of the time, the children were kind but Lucas was actually psychologically bullied by a couple of adults, church leaders who thought that his anger was funny. I told them specifically what I would do for them if they ever provoked him again. It stopped. I home-schooled him to protect him and to encourage his natural gifts, which are profound. He scored 27 on his ACT and went to college.

I had to advocate for my son in ways that I never thought should be necessary because a lot of people in the general public are either idiots or simply uninformed about autism. Autistic children are not brats, they have a developmental disorder and I frequently had to “educate” others to this simple fact. If you are raising an autistic child, know this, your child is not a brat, is not demon-possessed and can’t help most of his behavior. Social moors are nonsensical to him. Imagine what the world would be like if you really thought that nobody noticed if you didn’t wash your face or brushed your teeth or you thought that nobody could see you if you picked your nose. What if you thought that nobody heard you talking to yourself? What if you walked with one foot turned out so far that you tripped other people around you? What if you really thought that the sky was falling if you looked up at it so you just never did? Did you know that all musical C’s are green? Knowing the color of sound is called chromesthesia. My son told me these things and much, much more and still does. His world is not like mine. He graduated college, with his Bachelor’s Degree, on a wing and a prayer but could never pass the Comprehensive Exam for his Master’s Degree. That’s way down the road in this story. There’s much more. I am still caregiving and he is 26 now. I do it alone, by choice. It’s part of advocating for him and the journey is ongoing. It’s necessary to be as healthy as I can possibly be so that I live for a very long time, in good health. I work full-time and arrange therapy and other necessities for my son. If you live this life, take care of yourself. Your child is depending on you.