Autism Awareness Month Is Upon Us: But This Is My Life Everyday

Growing up, I imagined myself graduating high school, marrying, graduating from college and medical school, having a great medical practice of my own, and being the mother to a girl and a boy, and living in this perfect and amazing little world that I created for myself. So I actually DO have evidence that my mind was very imaginative and creative at one time! Today my life is very different than that white picket fence world I created so many years ago. I am the mother of three boys: Jordan, who will be 19 in August, Kobe, who just turned 17, and Zachary, who will be 15 in June.

Jordan was born at 23 weeks gestation, given the medical title of micro-preemie. He weighed in at an overwhelming 1 lb 4 oz, and was 11 ½ inches long. His eyes were still fused shut, much like a kitten’s when they are born. He was not breathing on his own, and had to be placed on a ventilator which he stayed dependent on for 18 months. During his initial 10 month hospitalization, he had many bouts with deadly viruses and infections, respiratory failure, congestive heart failure, and surgeries to have a tracheotomy and feeding tube placed. Due to these underlying medical issues, his development was delayed, and he had limited therapy. His therapists would come in to visit and he would go to sleep, or throw a fit and the nurses would make them leave. He learned pretty quickly that he had us all very well trained.

Kobe came along a year and a half later. My pregnancy and his delivery was all pretty normal, and without any real complications. He weighed six and a half pounds, and, fortunately for me, was a very good baby, because I still had my hands very full with Jordan. Kobe has since been diagnosed with ADHD and compulsivity by his pediatrician, as well as my additional personal diagnosis of “middle child with only child syndrome”.

Jordan received “round the clock” nursing care in our home, and from day one had constant adult interaction. The nurses would talk and play with him constantly, and he had constant attention from family and friends that would visit. What had previously been our dining room had been converted into a makeshift hospital room for his crib and all of the equipment that stayed hooked up to him. BACH was still visiting several times a week to work with him to catch up on some of his development that had suffered because of all of his medical issues.

By the time Zachary came along, the boys and I were living on our own in our new apartment. I had finally found a nurse that became very close to us, and managed to cut back to having her as Jordan’s only caregiver. Zachary’s birth was traumatic, and came with several serious complications which left me very sick and caused him to be hospitalized for a week following. He was the biggest of all three of my sons, weighing 6 lbs and 9 oz. He was very happy, and he smiled a lot. But all of that changed suddenly around one year of age.

Zach became very ill at around one year old and had to be hospitalized with RSV. Having had the experience I’d had with Jordan, I knew that RSV wasn’t a common diagnosis for a “healthy” child. Most children would have been diagnosed with a minor cold and that would be it. Generally when a child was diagnosed with RSV, it was an early indication, at least to my knowledge, of some sort of immune deficiency. When Zach was finally released from the hospital, I began to notice some serious changes in his behavior. By this time, I had become very well versed through my dealing with BACH for Jordan on what was “appropriate” behavior and milestones for children. When Zachary stopped making eye contact with me, smiling, eating foods, crawling, and doing all of those “normal” things, I was shocked! Something wasn’t right, and I knew it. But I didn’t know what it was, or why. And to add insult to injury, not only did he refuse all of these activities, but he began throwing fits. Not just little crying spells, but HUGE temper tantrums. Temper tantrums that would run the neighbors away. He would have to be held constantly, rocked VERY hard, patted on his bottom VERY hard. There were times that I would catch myself loading the baby in the car and driving for almost an hour, praying he would just fall asleep, because NOTHING I did would make him happy. Finally, after many, many sleepless days and nights, I mentioned to one of the therapists that perhaps they should take a look at him.

Jordan had settled into a living skills class by this time, and was making tiny steps of progress. He had begun to make noises and say small words, and was finally walking without a walker. He was still very happy, other than his little outbursts we associated with his inability to communicate what he wanted. Based on evaluations by BACH staff, Zach was placed into speech therapy and physical therapy sessions with their staff. During one of these sessions, he lost his temper and had a complete meltdown. And then he did it. He BEAT HIS HEAD ON THE FLOORMAT! The therapist and I just looked at each other, and then back at him, and at that very moment I looked at him and I KNEW exactly what I was dealing with.

Zachary was tested through the school and was finally given the label Pervasive Development Disorder, which later, after being evaluated further, was changed on his file to Autism. Not long after, Jordan was also tested through his school and it was decided that he too, would wear that label. Zach was placed the following year into the CATS program, which was a pilot program geared towards students with autism, and appropriately stood for “Children Achieving Through Scheduling“. In that year, the change I saw in him was remarkable. He relied on a picture board schedule to instruct him on what his next task was for the day, and it seemed to calm him, for the most part. Besides of course, having to deal with the expected behavior issues that would come from teaching a child to “do what your friends are doing”. They call that modeling. I call it frustrating. It really makes you rethink that old phrase “If your friends jumped off a bridge, would you?”

Over the course of the years to follow, we have had to learn to conquer each situation as it comes. Each situation I came across would have to have its own unique solution. I quickly learned that Autism is a huge word. It’s a question that has no right answer, because with every kid the answer is different. My two boys are like night and day. Zachary was trained with the modeling and scheduling approach. He has a very controlling and almost obsessive way about him. Everything is very black and white to him, and when he is sure that something is wrong, it is very difficult for him to let it go. In elementary school, he actually physically fought his friend at school during his school play performance, because he was sure the boy was standing in his spot, and that was NOT the way they rehearsed it. Needless to say, I got some very good video footage of what was the best 2nd grade performance of “Pirates” that I have ever seen!

Temper tantrums were treated differently with each child. With Jordan, we realized that he had “warning signs”. He would begin to make noises where we knew that a meltdown was coming. Then it was a race to the finish to find out what was causing the problem and remove it, and if that wasn’t possible, then we would scoop him up and run. Our outside the home activities were very limited, because we found that there were A LOT of things that set him off. Until then I had no idea that small appliances made noises that most people can’t hear, well, except for Jordan. We couldn’t use the vacuum with him in the house, we had to stop using the blender, the fans, and pretty much anything else that made things easier. We couldn’t have balloons at any function, or even balls that had to be aired up. With Zachary, the tantrums almost NEVER had a warning. One minute he was content with life, and the next thing we knew he would be screaming! My first instinct was to hug and squeeze him until he was happy again, but I learned that was not the answer. The therapists suggested at first that I leave the room and go to another. When I did that he would stop crying. But then he would walk right up to where I was and throw himself down to cry again. Finally the light bulb came on and the best idea ever was born! His occupational therapist gave me a tape recorder and suggested I tape him throwing a fit, then the next time he did it, I should play it for him. It stopped him in his tracks. For about a week he would throw a fit and I would turn the tape on so he could hear himself. Then, at the first of the next week, as requested, I took the tape to his teacher and therapists, who all pulled Zach into a conference room and they ALL listened to it together. As soon as he realized that he MUST have broken a rule, he hung his head down, and he NEVER did it again. Because it was against the rules. And his life is controlled by what he knows as “the rules”.

One of the most difficult things I deal with in working with my boys is trying to teach them appropriate social behavior. Social stories have played a huge role in my home because it gives them the chance to visualize and discuss social situations before they encounter them so that they can “practice” their behavior. This has always given them the chance to put words to feelings they have and understand that other people have those feelings too. Of course you are going to have moments where all training goes right out the window. I remember very clearly one time thinking I had prepared Jordan for our trip to the store, explaining what we would be purchasing, and that there would be no new toys on this trip out. “Yes ma’am. I understand” he said. Halfway into our list, I took a wrong turn in the store, and the toy section came into view. That did it. I heard the first indication there was a problem when he began to make what I call “car sounds” like a revving engine, but there was no time left on his short fuse and he began to scream and rock in the basket, leaving me red-faced and humiliated from the stares of others.

Raising these boys, I have found that the majority of lifestyle changes though, have taken place within myself. I have had to develop habits in my home and my routine that will allow the boys their comfort, and in turn allows me to accomplish daily tasks that everyone else takes for granted. A lot of people who know me well like to joke that I have developed a OCD type condition in the things I do. But when you have a child who can be thrown into a tailspin just because you turned the wrong direction to go home, you find it easier to just adapt than to fight it. When we run errands, I carefully explain everywhere we are going and when we are going home. This helps ease the anxiety that comes with the unknown.

It doesn’t help much that the boys’ behaviors contradict the other. Jordan would spend hours playing with cars and books and leave them very well categorized all over the living room. Cars would be arranged by colors, books read (very quickly) and then thrown into a pile. Zachary’s sense of order would kick into high gear and he would pick them up and put them away, the whole time yelling loudly that Jordan was very obviously breaking the Rules. This of course, would cause a vicious cycle between the two.

Raising a child who is not autistic between these boys has been a challenge as well, but I find that it has been very beneficial. My family has been given the opportunity to teach tolerance and educate others that we come in contact with about the boys’ very unique situations. My son Kobe seems to know when there is something different about a child, and has been in several situations at school where he has been described as the “defender” of kids who are being picked on or treated badly. This hasn’t always been “good” in the eyes of the school, but it is heroic in my eyes. I truly believe that my efforts in teaching him how to deal with his siblings have engrained that in him and it makes me proud.

A diagnosis of autism can hit you like a ton of bricks, you feel like there’s no hope and no way to fix your child. Know this: I decided long ago, that I am not trying to fix my sons. It’s impossible to succeed with that perspective. My goal is to help my children find a way to make their disability work with them. I don’t tell my children they can’t stim. I just make sure that they are somewhere where they don’t bother others or hurt themselves when they do so. If you take into consideration that we all have habits that provide us that source of guilty pleasure, then we ALL do it. I don’t want to take that from them, but instead teach them where it’s ok to do that.

Like any parent, you must learn to pick your battles. There are some things that your children will do that may drive you crazy, but you have to ask yourself, is this worth the outcome? Zachary’s sensory issues make it very difficult for him to tolerate eating foods that have a soft consistency. This was a big deal for me, because as hard as this may be to believe, I LOVE to eat. I felt like he was missing something special by being so limited to this, but I soon realized that constantly trying to force him to eat those things was taking a toll on his personality, and in turn causing regression in academics and other goals. After speaking with his doctor and having all of his blood work run and checked, I finally realized “This just isn’t a big deal.” He was a healthy kid, gaining weight and the only harm being done was he wasn’t enjoying what I did. That had to be ok.

If anyone can understand feeling alone in this, I certainly can. Even with numbers as high as the statistics are for autism, there are many people who dismiss it. Living with a child who has any form of autism makes it very difficult to relate to other parents who don’t have those issues. I have heard from very close friends and family members that my children are “just spoiled” and that “they will grow out of it”. I have even heard the comment “There’s nothing wrong with him, he’s just mean”. Friendships and family relationships can become strained when people who were close to you refuse to accept the situation for what it is. People are going to stare at you like a bad parent when your child is pushed over the edge by too much activity around them. I want to remind you that “Your worst situation might be someone else’s best.” People cannot always relate to my life, because they don’t live it. I try to remember that when I speak to people about my children. I made a point to stay in contact with my children’s teachers and counselors, as well as therapists that work with them in the school. If I encounter a behavior at home then I make sure that I contact someone for advice if I cannot use redirection to correct it. These children learn from repetition, and sometimes someone else’s perspective can help solve these issues. Every child with autism is different, and each situation has to be addressed a little differently based on the child. There is certainly no shame in asking for help when you don’t know what else to do. Make a point to ask questions about methods being used at school and adapt them to your home life to provide that consistency.

In that perfect world I mentioned previously, everyone would have the knowledge and ability to understand and provide support to parents like me. I want people to understand that my life is difficult, yes, but so rewarding, just as it would be had my children been “normal”. To us, this life is “normal”, and quite frankly I wouldn’t have it any other way. My boys are all very talented children, and I continue everyday to be amazed by the way their brains work. Not everyone can say that their child is a self-taught reader, or that they can do math problems in their heads with little effort at all, or that they can sing songs exactly as they hear them, or even that they are capable of memorizing vast amounts of information. I choose to see my boys through CAN DO eyes and not CAN’T DO eyes, and encourage them to challenge themselves to keep trying on things they struggle with. My duty to my children is the same as any other parent, and that is to make sure they become the best adults they can possibly be. I urge you all to continue working to raise education and awareness, so that every child on the spectrum is looked at through CAN DO eyes as well.


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