One of the greatest resources in dealing with autism is the
ability to communicate with other parents through the Internet. When Alex was
first diagnosed with autism, the presence of autism support groups was somewhat
limited, but using my dial-up modem and belonging to a few Listserv groups
allowed me to gain a wealth of knowledge from other parents who were in similar situations to ours. Thanks to Facebook, parents today have many autism
groups from which to choose, giving us the opportunity to share ideas,
empathize, and gain insight into ways to help our children.
Perhaps because we have been dealing with autism for more than twenty years, the attitudes of some parents on these online groups puzzles me. In fact, they remind me of some of my former middle school students. While many are earnestly and eagerly seeking information, others ask questions that have repeatedly been answered, and still others who don’t like the provided answers argue with those who have told them the truth. For some whose children have recently been diagnosed with autism, they want solutions that are inexpensive, easy, and quick. Of course, parents don’t want their children to suffer more than necessary, and we seek the best ways to help our children. However, autism treatment requires money, dedication, patience, and time.
Over the years, we have tried a variety of therapies and interventions to help Alex: speech, occupational, sensory integration, cranial, chelation, behavioral, music, and vision therapies, along with the gluten-free/casein-free diet, nutritional supplements, vitamin methyl B-12 injections, and medications. Some methods worked better than others, but all of them have contributed to helping Alex make progress. When Alex was younger, insurance typically did not cover expenses for autism therapies, and we paid for these therapies ourselves. We were blessed to be able to afford these expenses somehow, even on our teachers’ salaries. Thankfully, more therapies are covered for families by insurance and state funding, as Alex’s current therapies are, so that families don’t have as much financial burden as they did in the past. Nonetheless, I don’t regret a single penny that we spent on Alex’s treatments because I know they helped make him healthier and improved his skills.
Along with the expenditure of money, parents must also realize that helping a child with autism requires a great deal of effort. Certainly, putting a child on a restricted diet can seem overwhelming at first, but the benefits of improved behavior and healing digestive issues reward those efforts. However, parents need to be fully committed to making changes before attempting interventions. When we decided to put Alex on the diet free of glutens and milk products, we committed to removing these foods completely from his diet for at least three months. After seeing improvements during that trial period and grateful for Alex’s cooperation with the diet, we have kept him on this diet for nearly twenty years.
In addition, therapeutic interventions, such as speech and behavioral therapy, often require a great deal of practice and take months and even years before significant progress is made. Rarely do sudden changes occur in response to interventions. For us, the quickest changes we saw were in response to the supplement melatonin that immediately helped Alex sleep better instead of wandering around in the night and vision therapy that significantly improved Alex’s balance within a few weeks. Another intervention that had sudden impact was the introduction of vitamin methyl B-12 injections. Within a week of starting the B-12 shots, Alex was finally able to use the toilet independently after ten years of potty training. Apparently, the methyl B-12 injections caused nerve healing that allowed him to feel the urge to use the toilet. In this situation, a seemingly quick fix solved a problem we had been dealing with for many years. However, most of the improvements we have seen were more gradual, requiring dedication and patience, even when we could not see much progress being made.
For those of us whose children are now adults with autism, we have gained years of experience that we are happy to share with others. We have learned that treating autism is not a sprint race, but instead, a marathon where we must pace ourselves along the way. Perhaps one of the best pieces of advice I learned came from Alex’s childhood doctor, who always reminded me to begin only one new intervention at a time so that we could assess the response to therapy accurately. In addition, she advised us to give new things a fair trial because healing is not usually instantaneous; progress takes time.
Most of all, the lesson I have learned along the way is to trust God, especially in the difficult times and when progress seems slower than I’d like. Despite our fervent prayers for Alex, God has His own plans for healing. Through our experiences, we have developed our faith as we’ve waited and been encouraged by the progress we have witnessed. While Alex has not fully recovered from all of the issues autism has caused, his support team of therapists calls him “a success story,” and we realize that all the costs, efforts, and time have been worthwhile. Moreover, we are thankful that Alex is happier and healthier, and we continue to place our hope in God, knowing that He will always be faithful to us, just as He has always taken care of our needs in the past.
Perhaps because we have been dealing with autism for more than twenty years, the attitudes of some parents on these online groups puzzles me. In fact, they remind me of some of my former middle school students. While many are earnestly and eagerly seeking information, others ask questions that have repeatedly been answered, and still others who don’t like the provided answers argue with those who have told them the truth. For some whose children have recently been diagnosed with autism, they want solutions that are inexpensive, easy, and quick. Of course, parents don’t want their children to suffer more than necessary, and we seek the best ways to help our children. However, autism treatment requires money, dedication, patience, and time.
Over the years, we have tried a variety of therapies and interventions to help Alex: speech, occupational, sensory integration, cranial, chelation, behavioral, music, and vision therapies, along with the gluten-free/casein-free diet, nutritional supplements, vitamin methyl B-12 injections, and medications. Some methods worked better than others, but all of them have contributed to helping Alex make progress. When Alex was younger, insurance typically did not cover expenses for autism therapies, and we paid for these therapies ourselves. We were blessed to be able to afford these expenses somehow, even on our teachers’ salaries. Thankfully, more therapies are covered for families by insurance and state funding, as Alex’s current therapies are, so that families don’t have as much financial burden as they did in the past. Nonetheless, I don’t regret a single penny that we spent on Alex’s treatments because I know they helped make him healthier and improved his skills.
Along with the expenditure of money, parents must also realize that helping a child with autism requires a great deal of effort. Certainly, putting a child on a restricted diet can seem overwhelming at first, but the benefits of improved behavior and healing digestive issues reward those efforts. However, parents need to be fully committed to making changes before attempting interventions. When we decided to put Alex on the diet free of glutens and milk products, we committed to removing these foods completely from his diet for at least three months. After seeing improvements during that trial period and grateful for Alex’s cooperation with the diet, we have kept him on this diet for nearly twenty years.
In addition, therapeutic interventions, such as speech and behavioral therapy, often require a great deal of practice and take months and even years before significant progress is made. Rarely do sudden changes occur in response to interventions. For us, the quickest changes we saw were in response to the supplement melatonin that immediately helped Alex sleep better instead of wandering around in the night and vision therapy that significantly improved Alex’s balance within a few weeks. Another intervention that had sudden impact was the introduction of vitamin methyl B-12 injections. Within a week of starting the B-12 shots, Alex was finally able to use the toilet independently after ten years of potty training. Apparently, the methyl B-12 injections caused nerve healing that allowed him to feel the urge to use the toilet. In this situation, a seemingly quick fix solved a problem we had been dealing with for many years. However, most of the improvements we have seen were more gradual, requiring dedication and patience, even when we could not see much progress being made.
For those of us whose children are now adults with autism, we have gained years of experience that we are happy to share with others. We have learned that treating autism is not a sprint race, but instead, a marathon where we must pace ourselves along the way. Perhaps one of the best pieces of advice I learned came from Alex’s childhood doctor, who always reminded me to begin only one new intervention at a time so that we could assess the response to therapy accurately. In addition, she advised us to give new things a fair trial because healing is not usually instantaneous; progress takes time.
Most of all, the lesson I have learned along the way is to trust God, especially in the difficult times and when progress seems slower than I’d like. Despite our fervent prayers for Alex, God has His own plans for healing. Through our experiences, we have developed our faith as we’ve waited and been encouraged by the progress we have witnessed. While Alex has not fully recovered from all of the issues autism has caused, his support team of therapists calls him “a success story,” and we realize that all the costs, efforts, and time have been worthwhile. Moreover, we are thankful that Alex is happier and healthier, and we continue to place our hope in God, knowing that He will always be faithful to us, just as He has always taken care of our needs in the past.
“…And let us run with endurance the race God has set before
us. We do this by keeping our eyes on Jesus, the champion who initiates and
perfects our faith…” Hebrews 12:1-2
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