A Father's Tale by Charles Durham Marshall

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A FAther’s tAle
By Charles Durham Marshall
Charles Marshall works in the financial services industry and lives in Scottsdale, Arizona, with his wife, Lisa, and son, CJ. He is very active with the 501(c)3 organization Dads 4 Special Kids (www.dads4specialkids.org).
who can easily do things, a child with autism may need years of coaching/habilitation to accomplish the same task. As fathers, we are expected to be the “fixers,” and the bottom line is that you cannot easily “fix” autism. What you can do is hold on to hope, support your wife, and cherish each minor/major victory as the equivalent of shooting a winning basketball shot at the buzzer. Getting a diagnosis Our pediatrician referred us to “the place” in town for developmental disabilities. After the several-month wait, we got a diagnosis of “gifted with learning challenges,” not an autism diagnosis. We continued to go back, but we were not satisfied. The “not knowing” or dissatisfaction consumed our lives. Luckily, my wife got a referral to our school district’s preschool program for children with learning delays. It was the best thing that could have happened because my son got used to the school environment. Also, it was through the school that more than a year and a half later our son was tested, which led to a diagnosis of autism. As we look back now at that time, CJ was a poster child for an autism diagnosis, which still frustrates me intensely. My wife and I were not familiar with autism. When you are about to have a child, you are not warned about the signs of autism or special needs. If I had to do it all over again, I would have been more aggressive. We thought his lack of speech might have something to do with chronic ear infections in his early life. We did not even know to consider autism.
n the summer of 2000, I was blessed to become a father to a very wonderful baby boy, CJ. I vowed to be Super Dad. We had a few early health issues typical for a preemie – survived those and seemed to be progressing normally up to about 18 months. At that point, being an involved uncle to nine nieces and nephews, I started to have suspicions about my son. In my wildest dreams, I had no idea the road we were going to follow. The nature of dads The hardest part of this entire seven-year (so far) odyssey is the fact that, like most men, I found it extremely difficult to talk with my family and friends. The reason it is so hard to talk about your special needs or child with autism is that others don’t understand it because they don’t live with it day in and day out. Unlike a neurotypical 3- or 4-year-old
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Then I heard a specialist give a speech, and I approached him afterward to explain my son’s issues. The speaker said, “If your child can tell you the word you missed in a book when you read it to him, but he is not talking, that is because of something else. Your kid’s not talking is a symptom of something else. Like throwing up when you have the flu. The throwing up is the result of the flu. The language delay is a symptom of a developmental disorder of some kind; it is not an underlying language problem.” He encouraged me to continue the fight and get more testing. Since he was 2, when I knew my son had issues but we could not get anyone to diagnosis them for us, I have rarely gotten a solid night’s sleep. This has improved recently because I have made friends with other fathers of special needs children. The entire ordeal of misdiagnosis and delay leaves me wondering to this day if I failed my son. Other fathers and mothers of special needs children have shared similar feelings with me. Life with autism Here’s what our weekend life was like for years: My wife and I would devise a weekend battle plan. We would leave the house at 7 a.m. and take our son to different activities that interested him. We stayed with that activity until he lost interest. Then we would move to another venue and set of activities. One of us would get dropped off around 1 p.m. for a nap; then we would switch, and the other would get dropped off at 3 p.m. for a nap. The reason we left at 7 a.m. was that our
The reason it is so hard to talk about your special needs or child with autism is that others don’t understand it because they don’t live with it day in and day out.
son would get up at 4:45 a.m. and announce, “I am up for the day.” After being up for two hours, we were climbing the walls, so it was time to get out. When our son was mostly nonverbal, he loved to chase pigeons. I freely admit that I bought four large loaves of bread each time we went to the park because he would talk about chasing the birds afterward. The closest my wife and I have ever come to a divorce was because my son refused to get into a bathtub or shower. This meant we had to bathe him in the bathroom sink and wash his hair in a booster seat placed on top of three plastic mats in our living room and work with bowls and tubs of water. Let’s just say my wife’s skills as a project manager orchestrated each home-salon treatment beautifully. But here’s the problem: men are from Mars and women are from Venus, and my lack of organization and communication skills nearly put us into divorce court. My wife’s gentle introduction of the bathtub and other items eventually led to the acceptance of those items by our son – but it took a long while. Once, while trying to earn good hubby points by giving my wife a break on Saturday mornings, I enrolled my son in a Little Gym class. I thought he would take right to the class. To my dismay, the first two weeks he stood in the corner and cried for the entire class. Thinking back on this, it should have been a red rocket in front of my face, but that’s Monday morning quarterbacking. I explained the situation to my wife and, to her credit, she came the third week, kept him in a little area until he was comfortable, and by the middle of that session people said they did not recognize the child because he was so happy. Also, at birthday parties for neurotypical kids, the children would sit for a magician or want to learn games. But not my son. At birthday parties, he stuck out because we would be in the bounce house or going down the slide or running up the hill over and over again. Up until recently, going to a sit-down restaurant would entail bringing special food, a massive quantity of books, and at least one or two electronic devices while promising him a reward for being good. Another challenge has been being away from home for a night. I bought a VCR/ TV player for $80 when my son was 2 so he would always have his favorite videos. I have spent a significant amount in tips to make sure the beloved VCR/tape player has
ISSUE 33 2009
survived transport on trains and hotel luggage carts on the few occasions we have attempted short trips. Like most autistic children, my son has a very select diet. Every time we travel, we bring our own cooler, the aforementioned VCR player, and now we have our own “portable” microwave oven. We recently stayed at a very nice resort that has the top-rated chef in our state, and I brought my microwave oven to the hotel and walked past the restaurant with it. What my son lives on is not on any hotel menu. With the microwave, we cooked his meals in the room and helped him chill out, so we could travel with reduced stress. I used to take the fact that my son was not toilet trained very hard. I did this until the day that the state administrator who approved us for services pointed out to me, “Mr. Marshall, you have nothing to be ashamed of. I have worked with special needs children for two decades. Over 60 percent of them, when they start school, are not toilet trained.” This came as a great relief to me because several people in my life had stated we were bad parents because our child was 4 and not toilet trained. One of the limitations of living in the state we live in is the lack of specialized therapists in speech and occupational therapy. For 18 months, I drove my son the equivalent of 90 miles a week, after work, in rush hour traffic, to get him the services he needed. During this time, I felt totally isolated from the rest of the world because all I did was drive. Went to work and drove. I have not gone to a happy hour or an after hours work function with my co-workers in four years. I am sure the afterschool program receptionist thought I was mad because I would run in, get my kid, and get out, no matter how much they wanted to talk to me. I just told them “call me.” Why? I had to get on the road. I got tired of the radio and bought some different tapes of my favorite groups, so my son knows quite a few classic rock songs. Understanding from others A parent of a special needs child quickly learns who his or her true friends are. Unfortunately, 95 percent of your friends evaporate. Once you find fathers of other special needs children, your isolation can diminish. My sister’s children were blessed to have sports and afterschool activities dominate
their lives. They do not understand why, to this day, my son has not been on one sports team or in one T-ball or YMCA basketball game. They do not understand that, for my son, I can have either a sports jock or a child who can write legibly and perform basic life skills but, at least for now, not both. My immediate family, for the most part, lives thousands of miles away, and my son has difficulty traveling. It is hard for them to fathom why I won’t meet them at wonderful resorts in distant locations. My family has come to visit a few times. Unfortunately, during these visits, I have had to decline certain invitations because I will not put my son in a social situation where the outcome is sure to be stressful. We tried early on, and it was a disaster that set us back months. Often family members can’t understand why special needs parents need to stay home so the OT/ speech provider or hab worker can come to work with the child instead of going out and socializing. Recently when my family was visiting, my wife went on her first overnight trip since my son was born, and naturally our babysitter was on vacation. I would not take my son out of his regular Sunday routine when my family was in town, and I know they were very unhappy with me. However, I have learned that I need to keep the drama caused by change in our lives to a minimum. My family knows that when I was single, I used to know where the assistant line coaches of NFL teams played college ball. From 2002 to 2007 I might have watched
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the equivalent (20 minutes here, 40 minutes there) of one entire NFL game per season. Instead of watching incredible catches and tackles on the field, we were engaging our son on family outings, trying to get through to him when he was isolated in his own autistic world and introduce him to our world. My family does not really understand this. I am not a drinker; however, the first day my son went up to a kid at McDonald’s Playland and asked him to play, I wanted to buy a bottle of Dom Perignon champagne. It had taken me well over a year to help him to accomplish that. School support The Battle of Shiloh in the Civil War was the day of reckoning that showed both sides how long and bloody the war was going to be. My day of reckoning was the first day of open house for kindergarten at my son’s elementary school. At the time, my son was not very verbal, but he could read. We got to the open house, and he read every kid’s name from kindergarten to fifth grade, looked up at me, made eye contact (which is very hard for an autistic child to do) and asked, “Dad, where is my name?” Being dumbfounded and heartbroken, I walked into the school’s office and was informed that they did not put the special education children’s names on the board because they were not sure which class they would transition to. To this day, my blood boils when I think of this incident. I have never felt so helpless as a father. The other dreadful experience that week was when the short bus started stopping at my house. There are three excellent elementary schools within a five-minute drive of our house, yet my son needs to be bused 45 minutes each way each day to a school with services for him. Another part of the isolation is that we have no neighborhood friends for our son. Special educators are, for the most part, very well meaning and very dedicated individuals who are trying to help special needs children; however, dealing with them has involved one snafu after another. My wife, in her professional capacity, has successfully negotiated with two of the largest Fortune 50 companies, but to get our son out of a self-contained classroom setting we had to hire an advocate. After three years of IEP (Individualized Education Program) meetings, we were emotionally and physically worn down. It took us six and a
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half months of negotiation and meetings to get him out of that class. During that fight, we were in survival mode – we paid the bills, stayed healthy, and made sure food was in the house. That was about it. I believe parents should not go into an IEP meeting by themselves. It is like negotiating against new car sales staff. The school knows all the tricks, and you are at a total disadvantage until you learn them. So, bring someone with you. I strongly recommend documenting everything. During the battle of getting our son out of the self-contained classroom, our documentation was so extensive I believe school personnel did not want to take the chance of a due process hearing. Of course it took time. In fact, we had to sit through the first IEP meeting for two and a half hours, during which time we were told our child was a behavioral problem who needed drugs. After we showed them some of our documentation, our child was recharacterized at the next meeting as an extremely intelligent young man who was a bit impulsive. I could tell by the second week of my son’s first-grade year that the year was totally lost because of the lack of funding and overburdened aides and teacher. Also, the teaching techniques used in the self-contained autism classroom totally contradicted the organized chaos of a regular classroom. Bluntly speaking, Custer did better at the Little Big Horn than my kid did at his first try at inclusion part-time in first grade. For the record, in his second attempt at first grade (we fought and made them let him repeat first grade), he is flourishing. Lessons learned I owe a large debt of gratitude to our babysitters. We live in a community where there is a large state university, so I advertised on its Web site specifically for early childhood development, education, and speech majors. To this day, most of his babysitters are still in touch with us, and some are still a part of our son’s life. We have also been blessed with some excellent, dedicated, passionate therapists who have stated they are reinvigorated and reenergized by the commitment, dedication, and effort
we put into our son to help him reach his full potential. For me, one of the hardest things to do as a father has been to walk the walk after talking the talk when it comes to adjusting my expectations for my son. My son has learned to play baseball; however, he still takes batting practice sitting on top of the slide. Though he can hit the “T,” his choice is to sit on top of the slide and let me pitch balls to him. I feel strange every time, but I still need to go out there and play with him the way he wants to play. Having to deal with the stresses of autism has, at times, put a significant strain on our marriage. One way we deal with this strain is to have one date night every week. I would encourage anyone who has children, special needs or not, to have a weekly ironclad date night. In our case, we hired one babysitter to work one shift every week for this purpose. Even if my wife and I were too tired to talk, we would at least go out for an hour to a local restaurant for a bite to eat and be together. Like most fathers of special needs children, I am truly indebted to my wife. Her love of our son and organization of therapies is amazing. If you are reading this article and you are not a parent of a special needs child and your sibling or friend is and you want to help him or her, it’s really easy. Offer to get to know the child so that Mom or Dad can get a two-hour break. Offer to have them over for dinner or bring dinner in for them. If they are overwhelmed by the school situation, help them find an advocate. Have your child play with the special needs kid (IT WILL MAKE THEIR DAY). I have learned about the important things in life from my son: a good sense of humor, the joy of going somewhere as a family, and the power of an infectious laugh. What I found out from other special needs fathers is that I should be eternally grateful for my son because, compared to what other fathers have to deal with, I really have very little to complain about. As a nation we need to tackle autism now because by all indications it is only going to get worse. Yachting is a rich man’s sport; autism is a billionaire’s disease.
I have learned about the important things in life from my son: a good sense of humor, the joy of going somewhere as a family, and the power of an infectious laugh.