The guilt factor...ain't it true...lol...and then cry...

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When a child is diagnosed with autism, parents develop a new vocabulary.Conversations contain words like ABA, receptive and expressive language,discrete trial training, eye contact, floor time and biomedicalapproaches.Parents share their joys, their fears, their strategies and theirdreams.In fact, almost everything is easily discussed except one thing – THEGUILT FACTOR.While it's proven time and again that parents are NOT responsible fortheir child's autism, many parents have this nagging little feeling somewheredeep inside that they are to blame. If they don't feel they caused theautism, they typically feel that their child would be doing better andprogressing faster if they just put more effort into it.One can only equate it to

preparing for the Bar exam. No matter how muchyou study, you could always do a little more. Simple every day activitiesresult in great emotional stress for an autism spectrum parent. It's notlong before the "guilt factor" spills over into every area of life.HOW THE GUILT FACTOR IMPEDES YOUR LIFEYour autism spectrum child is interested in animals. In a completely"non-typical" method of conversation, your child names all the farmanimals and wants you to repeat it back to him. Again and again and again! You doso and the guilt factor sets in. "This is so inappropriate" you think toyourself. "I should take this opportunity to teach my child how toconverse appropriately." But you know that if you don't comply to yourchild's wishes he'll have a meltdown, and you're busying making dinner,your two year old is crying because she's hungry and your eldestneeds help with her homework questions.

Disheartened, you continue the banter withyour child, blaming yourself for not doing a better job.The telephone rings and it's your friend. You're thoroughly enjoying theconversation but just then you notice your child repeatedly spinning thewheels on a toy truck while making a strange noise. "I shouldn't betalking to my friend. I should be teaching my child how to play with thattoy" you silently berate yourself. Then your child begins to run up anddown the hall and you silently reprimand yourself. "I must get off thisphone. Time is precious and I should be engaging my child". Feelingdiscouraged, you're torn between hanging up on your friend andredirecting your child.When picking up your child from OT, you chat politely to the otherparents. One mother mentions that her daughter has extra speech therapy. Anotherone talks about the social skills group she enrolled her son in. Anotherone

declares that she just signed her child up for Karate with an aide tohelp him. Despair and guilt wash over you. "These parents do so much" youthink to yourself. "How do they do it? Where do they find the time? Ishould do more. Perhaps I should have signed my child up for Karateinstead of swimming." As the guilt factor sets in, you shamefully accuseyourself of being a bad parent.It's been a long day and you're exhausted. You've been to work, dealtwith tantrums, spoken to three teachers, rearranged your child's therapyschedule, cooked dinner, bathed your children, cleaned up andprompted your child through simple activities. As you plop on the couch to watch someTV, that feeling of guilt washes over you. "I shouldn't be relaxing." Yousay to yourself. "I should be re-writing my child's program. I should beresearching new methods of treatment. I should be going over my child'sIEP." But your brain can't

take one more thought about autism and youguiltily sink into the couch and think "Tomorrow, I'll tackle it tomorrow".KEEP IT IN PERSPECTIVEParadoxically, parents of autism spectrum kids are one of the mostproactive groups that exist. While they commonly feel they're not doingenough, these parents should be honored and commended. They're able tocope with more in a day, a month and a year than most can conceive ofcoping with in a lifetime. Their resilience, creativity and persistencehelp their children progress and reach potential that nobody thoughtpossible. The great strides that have been made in the autism communityare largely due to parent driven establishment. The next time the guiltfactor sets in, keep it in perspective and remember the following points.1. You're not aloneYou are a great parent. You are your child's best advocate. You have alot on your plate. Your days are often

filled with a great deal of mentalanguish and emotional stress. You help your child through smallactivities that most parents don't even think about. You fight for services for yourchild. You fight for the best class placement. It can be tiring. It canbe exhausting. As you look around, you often feel that other parents aredoing a better job. Realize they think the same of you. The guilt factorimpedes their life too. Parents of autism spectrum kids have a commonbond. They understand, they empathize and they spur each other on. If youdeclare "My 6 year old dressed independently today" they rejoice withyou, because they too appreciate every milestone, large or small.2. OrganizationsParents of children with autism have been the catalyst of some of thelargest and most successful establishments for helping those on thespectrum. This is on a worldwide basis. A large number of autism schoolshave been

driven by parents. Special education distributors andmanufacturers often have parents at the helm. Researchers and educatorsare often parents.. Increased services in schools and communities are theresult of parent driven efforts. Non profit establishments have teams ofdedicated parents who are committed to helping those on the spectrum. Youmight not be part of one of these establishments but you have made adifference. It's the combined unity of parents and a strong voice whenadvocating for your child that calls these organizations into being.3. RelationshipsWhen your child is born you are instantly a parent. The role of a parentis to love, educate and support your child. You provide your child withvalues, teach right from wrong, build their self esteem and guide them tobecome happy, independent adults. When you have a child with autism, youbecome a teacher. The role of a teacher is to educate a

child. Whetherit's a small task or a large task, teachers use every opportunity toeducate a child. As a parent of a child on the spectrum it's difficult tomaintain a balance. While you want your child to learn as much aspossible, you also simply want to be a parent. The next time the guiltfactor sets in because you're not teaching your child at every moment,release it immediately. Your child loves it when you're just being a Momor just being a Dad. While it's perfectly fine to teach some of the time,a healthy balance leads to a healthy relationship between you and yourchild. Enjoy those moments with your child. Even if they aren't typical interactions,they're certainly fun!4. AcceptanceOn asking adults with autism "What's the single piece of advice youwould give to parents of autism spectrum kids?" the answer is almost always aunanimous "Unconditional love and acceptance." For just a moment,

viewyour child's perspective. Almost every action gets corrected. Almostevery behavior is modified. Method of play is considered inappropriate.Self stimulatory behavior is often halted. Your child is constantly beingtold to think, talk and act in a way that is foreign to his inner nature.It can't be easy to keep one's self esteem intact. I certainly advocateteaching as many skills as possible to help your child function in life.However, it's essential your child knows you believe he is perfectjust the way he is. It's simply unfortunate that others might have difficultyunderstanding him. Your child should intrinsically know the reason he'slearning new skills and altering his behavior is not because youwant to change him, but because it will help others relate to him, granthim acceptance and allow him to lead a more productive life. The nexttime you feel guilty about not correcting your child's behavior

or mannerisms,

remember that delighting in your child's unique qualities is just aimportant as teaching appropriate actions.The next time the Guilt Factor impedes your life, simply acknowledge itspresence. You don't feel guilty because you're a bad parent. You feelguilty because you're an outstanding parent. You're a parent who lovesyour child dearly. You're a parent who is so committed to helping yourchild learn that you feel bad taking time for yourself. Your hard work,dedication, energy and eternal giving are unbeknown to most andrecognized by few. I acknowledge you and say "Well done! I know how committed youare and what it takes. You are an exceptional parent and I recognize yourgreatness!- By Jene AviramNatural Learning Conceptswww.nlconcepts.com

ElissaMom to (6), Jennah (4- ppd-nos, adhd), and Jesmarie (2- lipomyelomeningocele, tethered cord, syringomyelia, neurogenic bladder, grade II reflux, daily prophylaxis, surgeries at 3 months and 10 months)

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