Sunday, February 12, 2012

Autism Parents & The Guilt Factor written by Jene Aviram

 AUTISM DADDY'S COMMENTARY:  I've been living this autism lifestyle for almost 7 years now and I still succumb to GUILT on a weekly basis.  Not guilt over me or the wife being the cause of my son Kyle's autism... but more guilt about not doing MORE.  If you read this blog or my Autism Daddy Facebook Page often enough you'll see "guilt" creep in to my writing often.


I was thinking about it and I googled "autism and guilt" and wouldn't you know it, I found another great article about it written by Jene Aviram.  I've reposted a few of Jene's articles on my blog (here) & on my FB page (here & here).  She has a TON of great articles about autism from a parent's point of view and from my experience her articles do not seem to be very widely circulated, at least not within the autism blogs and fb pages that I'm reading.  So from time to time I'm going to repost her stuff cuz I think it's THAT good and deserves a bigger audience so please read, enjoy, comment and share. 


Ok, so without further ado here's...




"The Guilt Factor" written by Jene Aviram of National Learning Concepts




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 biomedical approaches. Parents share their joys, their fears, their strategies and their dreams. In fact, almost everything is easily discussed except one thing – THE GUILT FACTOR.


While it’s proven time and again that parents are NOT responsible for their child’s autism, many parents have this nagging little feeling somewhere deep inside that they are to blame. If they don’t feel they caused the autism, they typically feel that their child would be doing better and progressing faster if they just put more effort into it. One can only equate it to preparing for the Bar exam. No matter how much you study, you could always do a little more. Simple every day activities result in great emotional stress for an autism spectrum parent. It’s not long before the "guilt factor" spills over into every area of life.


HOW THE GUILT FACTOR IMPEDES YOUR LIFE


Your autism spectrum child is interested in animals. In a completely "non-typical" method of conversation, your child names all the farm animals and wants you to repeat it back to him. Again and again and again! You do so and the guilt factor sets in. "This is so inappropriate" you think to yourself. "I should take this opportunity to teach my child how to converse appropriately." But you know that if you don’t comply to your child’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 eldest needs help with her homework questions. Disheartened, you continue the banter with your child, blaming yourself for not doing a better job.


The telephone rings and it’s your friend. You’re thoroughly enjoying the conversation but just then you notice your child repeatedly spinning the wheels on a toy truck while making a strange noise. "I shouldn’t be talking to my friend. I should be teaching my child how to play with that toy" you silently berate yourself. Then your child begins to run up and down the hall and you silently reprimand yourself. "I must get off this phone. Time is precious and I should be engaging my child". Feeling discouraged, you’re torn between hanging up on your friend and redirecting your child.


When picking up your child from OT, you chat politely to the other parents. One mother mentions that her daughter has extra speech therapy. Another one talks about the social skills group she enrolled her son in. Another one declares that she just signed her child up for Karate with an aide to help him. Despair and guilt wash over you. "These parents do so much" you think to yourself. "How do they do it? Where do they find the time? I should do more. Perhaps I should have signed my child up for Karate instead of swimming." As the guilt factor sets in, you shamefully accuse yourself of being a bad parent.


It’s been a long day and you’re exhausted. You’ve been to work, dealt with tantrums, spoken to three teachers, rearranged your child’s therapy schedule, cooked dinner, bathed your children, cleaned up and prompted your child through simple activities. As you plop on the couch to watch some TV, that feeling of guilt washes over you. "I shouldn’t be relaxing." You say to yourself. "I should be re-writing my child’s program. I should be researching new methods of treatment. I should be going over my child’s IEP." But your brain can’t take one more thought about autism and you guiltily sink into the couch and think "Tomorrow, I’ll tackle it tomorrow".


KEEP IT IN PERSPECTIVE 


Paradoxically, parents of autism spectrum kids are one of the most proactive groups that exist. While they commonly feel they’re not doing enough, these parents should be honored and commended. They’re able to cope with more in a day, a month and a year than most can conceive of coping with in a lifetime. Their resilience, creativity and persistence help their children progress and reach potential that nobody thought possible. The great strides that have been made in the autism community are largely due to parent driven establishment. The next time the guilt factor sets in, keep it in perspective and remember the following points.




 1. You’re not alone
You are a great parent. You are your child’s best advocate. You have a lot on your plate. Your days are often filled with a great deal of mental anguish and emotional stress. You help your child through small activities that most parents don’t even think about. You fight for services for your child. You fight for the best class placement. It can be tiring. It can be exhausting. As you look around, you often feel that other parents are doing a better job. Realize they think the same of you. The guilt factor impedes their life too. Parents of autism spectrum kids have a common bond. They understand, they empathize and they spur each other on. If you declare "My 6 year old dressed independently today" they rejoice with you, because they too appreciate every milestone, large or small.


2. Organizations
Parents of children with autism have been the catalyst of some of the largest and most successful establishments for helping those on the spectrum. This is on a worldwide basis. A large number of autism schools have been driven by parents. Special education distributors and manufacturers often have parents at the helm. Researchers and educators are often parents. Increased services in schools and communities are the result of parent driven efforts. Non profit establishments have teams of dedicated parents who are committed to helping those on the spectrum. You might not be part of one of these establishments but you have made a difference. It’s the combined unity of parents and a strong voice when advocating for your child that calls these organizations into being.


3. Relationships
When your child is born you are instantly a parent. The role of a parent is to love, educate and support your child. You provide your child with values, teach right from wrong, build their self esteem and guide them to become happy, independent adults. When you have a child with autism, you become a teacher. The role of a teacher is to educate a child. Whether it’s a small task or a large task, teachers use every opportunity to educate a child. As a parent of a child on the spectrum it’s difficult to maintain a balance. While you want your child to learn as much as possible, you also simply want to be a parent. The next time the guilt factor 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 Mom or 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 your child. Enjoy those moments with your child. Even if they aren’t typical interactions, they’re certainly fun! 


4. Acceptance
On asking adults with autism "What’s the single piece of advice you would give to parents of autism spectrum kids?" the answer is almost always a unanimous "Unconditional love and acceptance." For just a moment, view your child’s perspective. Almost every action gets corrected. Almost every behavior is modified. Method of play is considered inappropriate. Self stimulatory behavior is often halted. Your child is constantly being told 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 advocate teaching as many skills as possible to help your child function in life. However, it’s essential your child knows you believe he is perfect just the way he is. It’s simply unfortunate that others might have difficulty understanding him. Your child should intrinsically know the reason he’s learning new skills and altering his behavior is not because you want to change him, but because it will help others relate to him, grant him acceptance and allow him to lead a more productive life. The next time you feel guilty about not correcting your child’s behavior or mannerisms, remember that delighting in your child’s unique qualities is just as important as teaching appropriate actions.

The next time the Guilt Factor impedes your life, simply acknowledge its presence. You don’t feel guilty because you’re a bad parent. You feel guilty because you’re an outstanding parent. You’re a parent who loves your child dearly. You’re a parent who is so committed to helping your child learn that you feel bad taking time for yourself. Your hard work, dedication, energy and eternal giving are unbeknown to most and recognized by few. I acknowledge you and say "Well done! I know how committed you are and what it takes. You are an exceptional parent and I recognize your greatness!



Written By Jene Aviram This article is property of and copyright © 2003-2007 Jene Aviram of Natural Learning Concepts. Reference of this article may only be included in your documentation provided that reference is made to the owner - Jene Aviram and a reference to this site http://www.nlconcepts.com/ 
Toll free: (800) 823-3430 Main: (631) 858-0188 Fax: (631) 858-0061 sales@nlconcepts.com


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17 comments:

  1. Word. Once again, Jene is spot-on. You don't do too shabby yourself.

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  2. Thank you so much. I needed this. Having two special needs kids makes the guilt factor even bigger. Nancy

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  3. I feel guilty all the time because when he gets home from school I let him watch tv or just do what he wants for the 5 hrs he has till bed..I always think is there more I can be doing with him to help him..should I be doing this. Should I be doing that.. But he works so hard in school all week i don't wanna work him too hard at night too... It's very hard..

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    1. I feel the same. She likes to shut out the overstimulii by playing on the computer with headphones on. If she's had a bad day, she plays longer. I don't like to inturrupt her 'calming down' time. Sometimes, it's MY calming down time!

      When I was reading the article, and it was talking about 'you are too good enough, it's not your fault, you do enough..." I kept thinking, "Don't say that, don't say that". If I were doing it right, it wouldn't hurt so much.

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  4. This is the worst part of it all in my opinion. I have an autistic 4 year old son and I also have his four year old typical twin and a 6 year old daughter. I feel tortured all the time....If I am paying attention to Kevin, I am ignoring the other two and vice versa---I always feel like I am failing someone...I just miss being a mom without all the awful guilt...the problem is if someone told me that my autistic son's condition is what it is and i just have to deal with it I could make peace with it but there is so much literature showing they can be helped and that every moment counts...so you feel like you can never relax and that failure to act could make the difference in his quality of life...I have a four day week job and I am just exhausted all the time...but I feel so bad when I get home and my son is just stimming and I have to run after him and try to engage him and all I want to do is just relax and interact with my kid without working so damn hard all the time...the guilt is overwhelming..I can never relax even when they sleep....I feel like I should be working on it even when they sleep.... Nancy

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  5. Another amazing post.

    Thank you so much for taking the time to write these.

    :-) x

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  6. I feel so fustrated most of the time... Everyone says early intervention is KEY. What if you don't have the money or resources to help your kid get better or you have a spouse that believes your child will just grow out of it and keeps you from being proactive for your child. What happens then? The guilt is overwhelming all I do is worry and cry some days...

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  7. www.mumonamission.org I'd like to add a like and part of this story to my website. Its great to read a dads perspective

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  8. www.mumonamission.org I'd like to add a like and part of this story to my website. Its great to read a dads perspective

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  9. I was just discussing this with my husband yesterday. Feeling like we haven't done enough. That nagging feeling is always there, too. Always.

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  10. I feel this way too. My husband and my sons teachers say I am doing everything I can but I feel sometimes I can do more. At the same time if I push my 4 year old son then we have melt-downs. I was told my OT and speech to do fun play/learn, but by doing that I feel that isn't enough. But then I think whatever I am doing must be working because look how far he has come. It doesn't stop the guilt but I try to take it one day at a time.

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  11. That was very helpful to read right now. It's spring break, and I feel guilty about how much YouTube my twins have watched, and how much time they've been wandering around the house. I am going to focus on how relaxed and happy they've seemed!

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  12. I think I fall under the "feeling bad for taking time" for myself. I am up to my eyeballs in research continuously, nightly, thinking "if I just check one more source I'll find that answer I'm looking for..." I do feel guilty. all the time.

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  13. I needed this article today and this past week. I have a 6 year old daughter on the spectrum and this last Friday I went out for the evening, without her or my 11 y/o NT daughter, for the first time in almost 7 years. I'm a stay at home mom and full-time college student. While I was preparing to go out, my 6 yr old kept putting her shoes on thinking she was going with me. Which is usually the case, when I had to tell her no she was staying home, as I walked out the door, her cries and screams followed me all the way to the car. It was heartbreaking knowing I was upsetting her by leaving her home. The "guilt" encroached and I almost returned home. I know she was fine after her 5 minute meltdown, but I still cursed and accused myself for being "selfish" and going out, but it was a much needed time away.

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