Jais’s Journey

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I wrote this March 9, 2007.

Yesterday Jais was officially diagnosed with autism. It is something we’ve suspected for awhile now, something we’ve struggled to accept and understand. Though we were pretty certain autism was to blame for his developmental delays, we held on to the hope that his symptoms would pass and the doctor would dismiss him as a “normal” two year old. However, our happy baby boy does indeed suffer from autism. We love him no less, in fact if it is even possible we love him more! We only seek to understand the world in which he dwells, one different from our own. We seek to be able to communicate with him, so his needs can be met as every child deserves. So, with this diagnosis in hand, we are ready to begin the arduous journey to our ultimate goal of Jais’s recovery. Since this all began, our lives have changed tremendously. We thought we knew where our lives were headed, we thought we knew what God’s plan was for us. However, now we realize that God always has surprises in store. My plan was to be student teaching this semester, and possibly entering the work force as a teacher next year. However, I feel that my calling now is to be an advocate for my children and the ultimate teacher for them, who need me more than the students I might’ve had. I find myself wondering if this is why I went down the education route all along, to someday be not only a teacher, but an informed teacher for my own children and a soldier aganist autism. I don’t know where life will take me now, Ionly know that I want to help my son. Our plan is to begin a therapy called ABA (Applied Behavioral Analysis) as soon as possible. It is a very intensive therapy that research has shown to be effective in helping children recover from autism. In the meantime, I am sending out this letter to all of you for a few reasons: for prayer, for understanding, for hope, and for help. I only ask that if you know of anybody who could help us on our journey by offering advice or resources, that you pass on our names and numbers or e-mail addresses. I ask that if you can find the time, you say a little prayer for our Jais, that he may someday soon be able to communicate effectively in order to enter school without difficultyand that we can build a bridge of communication with him. And I ask that you read the following information about autism, to understand what a problem it has become in our society. So that next time you see a parent like me, struggling with a child who seems “strange” and “out of control”, you will understand and remember that there is a 1 in 150chance that the child is autistic (Plus being a mom is hard anyway, right?!). So, please help that parent out by being understanding. And if the opportunity arises, share this information with others so they can do the same. Thank you for reading this note, which comes from theheart of our family
:)Joy Steuer

What is autism?Autism is a complex neurobiological disorder of development that laststhroughout a person’s lifetime. Because persons with autism exhibitdifferent symptoms or behaviors, ranging from mild to serious, autismis a “spectrum” disorder, or a group of disorders with a range ofsimilar features.Children with autism have difficulty communicating and interactingwith others. Many individuals with autism seem to retreat intoisolation , or fixate on a word, an object, or an activity.Sometimes symptoms are seen in infancy, while other children developnormally for a year or more before they begin to slip into their ownprivate world. At best, a high functioning person with autism maysimply seem eccentric, a loner. At worst, a person with more profoundautism may never learn to speak or care for themselves.You are never prepared for a child with autism. You will graduallycome to believe it, but never fully accept it, get used to it, or getover it. You put away the hopes and dreams you had for that child -the high school graduation, the June wedding. Small victories arecause for celebration – a word mastered, a dry bed, a hug givenfreely.How common is autism?Autism is a national crisis. It is the fastest growing disability inthe United States. A child is diagnosed with autism every 20 minutesand it now affects one in every 150 children.More than a disorder, autism is a national crisis affecting more than1.5 million Americans and costing the country more than $90 billionannual. As the rate of autism accelerates, so do our efforts.What are common signs of autism?Children affected by autism do not always experience the samesymptoms. The symptoms depend on the severity of the disorder. Theimpact or manifestation of these behaviors can range from mild todisabling. Early signs of autism are:Loss or lack of speech around 18 months of age.Little or no eye contact.Loss or lack of gestures, such as pointing or waving.Repetitive speech or actions.Unusual reactions to the way things look, feel, smell, taste or sound.How do I know if my child has autism?A qualified professional, such as a developmental pediatrician orpediatric neurologist, makes an autism diagnosis.A professional may use a screening questionnaire to gatherobservations from the child’s parents. If the screening indicates thepossibility of autism, a more comprehensive evaluation is oftenconducted by a medical team that includes a psychologist, neurologist,psychiatrist, speech therapist and other specialists.How is autism treated?Early Intervention: programs include educational programs and behaviortraining programs that emphasize developing language and socialskills.Special Education: specialized education programs geared to maximizethe potential of each individual, taking into consideration theirsocial needs.Family Support: counseling for parents and siblings of children withautism is encouraged and often helpful to cope with the challenges ofliving with an autistic family member.Medication: pharmaceutical interventions are prescribed to helpchildren develop social and language skills.Alternative Therapies: there also are a number of alternativetherapies available for children with autism. However, few have beensupported by scientific studies. Parents should research the providersand the treatment before beginning a course of non-traditionaltherapy.What causes autism?At this time, scientists do not know exactly what causes autism.Because no two people with autism are alike, autism is likely to bethe result of many causes.A number of research studies indicate a genetic link as the underlyingcause. Researchers are also examining possible neurological,infectious, metabolic, environmental and immunologic factors.Is autism genetic?There is strong evidence of a genetic component in autism. Inidentical twins, the chance of a twin developing autism if the othertwin is autistic is as high as 60%. The chance of a sibling or afraternal twin developing autism is 10-20% higher than in the generalpopulation.Cure Autism Now created the Autism Genetic Resource Exchange (AGRE).AGRE is a DNA bank of more than 647 families who have more than onechild with autism.I have heard about a new therapy. How do I know if it is safe for my child?As the number of children with autism has increased, so have the typesof therapies being offered. There are both medical treatments andalternative therapies to consider. For example, Applied BehaviorAnalysis (ABA), focuses on the behavioral aspects of autism disorders.Others deal with physiological aspects, like diet and sensory issues.In terms of safety, it is best to seek the counsel of a medicalprofessional before attempting any type of treatment program, and tolearn as much as you can before committing to a course of treatment.What services will my child need?Because the characteristics and severity of autism vary from person toperson, there is no single guideline for treating or helpingindividual with autism.Some will be highly functional and need assistance finding a job orattending college. Others may simply need help finding a roommate orapartment. Individuals with more severe autism will likely require agroup home setting.What is the prognosis for people with autism?Our hope at CAN is that by finding the causes and effective biologicaltreatments for autism, we will improve the quality of life for allpeople afflicted with this disorder. For years, parents were toldthere was no effective treatment for children with autism. They weretold to let go of dreams for their children and invest only in thehope that future generations might benefit from researching the causesand a cure for autism. Cure Autism Now has demonstrated that sciencecan indeed be hurried , through hard work, more funding andinnovation. A cure is closer than we thought – in time for thisgeneration.In terms of life span, barring additional health complications, peoplewith autism live as long as the average person. Quality of lifedepends on the individual. Some people with high-functioning autism orAsperger’s Syndrome do marry, attend college, have successful careersand participate in their communities. Other individuals with autismwill require lifelong care and guidance.How can scientific research, like the studies funded by CAN, make adifference in our lives?In 1995, the National Institutes of Health (NIH) devoted only $5million of its annual budget to biological research in autism. Morerecently, NIH reported spending $100 million annually on autismresearch. Cure Autism Now parents drafted the legislation that becamethe Children’s Health Act of 2000, and we led the way to itssuccessful passage. Cure Autism Now continues this fight by drivingpassage of the Combating Autism Act, designed to commit anunprecedented $860 million in federal funds to research, screening,intervention and education efforts.The scientific exploration, field building and increased awareness ofCure Autism Now’s first 10 years have laid the foundation for excitingdevelopments over the next decade. We are pleased by this, but we arenot satisfied. We are inspired to push harder and work faster tobring a better future to those who are burdened with the challenges ofautism today.This information was taken from the Cure Autism Now Foundation website:cureautismnow.org
–“There are only two lasting bequests we can hope to give our children.One is roots; the other, wings.” — Hodding Carter

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