A Ventography!

Just two moms letting off some steam

THE SECRET WORLD OF AUTISM PARENTING

23 Comments

INTRODUCTION TO THE SERIES: AUTISM PARENTING

We are introducing a new series of posts about what it’s like to be an autism parent. This is our way of contributing to autism awareness.

In this series, we are not going to discuss the definition of autism or potential causes. We do, however, find those issues extremely important and we have and will continue to discuss them in other series on our blog. But for this new series, our purpose is to make people more aware of what it’s like to walk in an autism parent’s shoes for a day.

We are trying to increase autism awareness by sharing our life and the lives of our closest friends who are living with autism. We want the reader to get a true glimpse into our world, our reality… the “raw” side of autism.

People can’t help or begin to truly understand autism if we don’t open ourselves up and share the struggles we all go through on a daily basis.

Autism parents are stuck in a vicious cycle. We have learned to be masters of “keeping it together”. We tell people everything is fine. We are not very good at asking for help or sharing our sorrows. We often isolate ourselves from society because we’re sick of explaining or making excuses. We know the general public can’t relate to what we’re going through and we’re too tired to educate. Instead of speaking out, we tend to internalize things.

But this is exactly what bites us, the autism community, in the butt.

This is a major reason that so little is known about autism by the general public. And because the public doesn’t really even know what autism is nor what it’s like to parent a child with autism, people are often harsh and judgmental.

We believe autism parents (ourselves included) need to do a better job of letting people in, versus living secretive lives. It is time to speak up.

Perhaps, if the public hears real life stories from autism parents in the trenches, they will become more understanding of our children and less judgmental of us as parents. People may even realize there is an autism epidemic affecting today’s youth, fund autism research, or hound the media to give autism the coverage it deserves.

One percent of the population currently has autism, and many say that number is still rising. Right now, the autism community is easily “swept under the rug” because we (autism parents) are taking care of everything… the bills, the childcare, the healthcare, the education, EVERYTHING. But what is going to happen when we die? When one percent of the population is parentless, and potentially homeless. Who will be responsible then?

Wake up world – autism is going to affect you in one way or another. Please help us now before things get out of control!

What can you do? Forward our autism parenting posts to increase autism awareness and help end the secrecy.

Copyright © 2012 [A Ventography!]. All Rights Reserved.

Advertisements

Author: A Ventography!

A Ventography is about: 1. Encouraging and empathizing with other parents on the autism spectrum. 2. Recycling and simplifying information on the latest autism news and health and diet tips. 3. Asking thought provoking questions designed to make us rethink what we've been told about autism. 4. Helping connect the dots that show, in some cases, autism is more than a brain disorder. 5. Challenging parents to rethink what they've been told, refuse the status quo, and escape the whirlwind of confusion.

23 thoughts on “THE SECRET WORLD OF AUTISM PARENTING

  1. I am so grateful to find this forum. My husband and I say daily how “If anyone had to walk a day in our shoes…” We also have triplets on the spectrum and are on constant “ready”. I explain it as having to be tag team life guards 24/7.

    Our triplets are verbal, but unconventionally so. A window into our experience is when I tried to take my older girls to dinner for their excellent report cards with the triplets. Forest refused to wear his shoes, kept chanting “home is far, far away” and proceeded to hurl his corn cob across the room. Laurel sang her a,b,c’s louder and louder each rendition, and Sky stood up in her chair, peed, and announced, “I tinkied and fed a tree!”

    To all those parents and siblings out there- give yourselves credit every day. Know that what you do is amazing, unrelenting, beautiful work for your family. I think sharing our stories can help us know we are not alone.

    Like

  2. Hello Mommies. I am new here at wordpress.com and I am trying to migrate my blog from blogspot.com. I am a mom with 3 kids with special needs and two of them have autism. I am from the Philippines. I really do understand where you are coming from. There is so much challenge in bringing up our kids, that I had long stopped looking for the answers to all my questions and learn to accept to live my life day by day by sensing the signs. Blogging was one of the good things that came out from that acceptance.

    Feel free to visit me at http://thebrightersideoflife57.wordpress.com and drop me a line or two.

    Blessings.

    Like

  3. My Ex-Wife and I have two son’s born almost two years apart. Our first born has asthema and our second has autism. In the begining we heard momma and da da from our second born child, then by 18 months to two years after several series of vacinations and fevers, there were only vowels or sounds, then no speech. We initial thought there was some type of hearing loss but tests by doctors verified that his hearing was normal. My ex would get emotional and fuss about his autism and the possible causes, heck i even thought it was my fault. We later learned he was autistic, non-verbal with the acute ability to understand speech fairly well. However the tantrums, short attention span, and negative behaviors got so bad he had to be transported to a phciatric hospital via ambulance from one of his schools and admitted for five days. At the hospital my son meet a specialist who is now his phychiatric doctor and whose speciality is children with autism. Our Autistic Son’s eight now we are divorced and I have physical custody of our two boys during the school year and they stay with their mom during summers and school breaks due to us residing in two different states and other factors. Our autistic child still has behavior issues at school and at before school care. As a result he was kicked out of the before school progranm and I had to find a new one. I will never give up on him and the possibility that he will one day be able to live a normal life. I’ve had family members, fraternity brothers, and even women who once told me they loved me become distant and cold because of my son his autism and his behaviors. They’ve said just give him to his mom, you know they got homes you can put kids like that in, I’ve even been told that he will never lead a normal life and that he is a burden I dont have to bare. Of course these same people are either stepping back, gone, or rarily around. Even his mom seems more concerned with the social security check she gets in the summer and how much more she could get if our son live there with her. Instead trying to find treatments or services that could possibly end his autism and improve his quality of life. Yet I continue to try to keep her involved and informed as I work at trying to find treatments therapies to help our son. I’ve spent lots of dollars in treatments, diets, supplements. Even now I’m considering HBOT,Neurofeedback, brain balancing, and anything else I can find to heal my boy. I believe in my sons both of them and I refuse to give up. I’ve experienced obstacles at my sons school, at my place of employment. Yet I remain determined. My son is now experienceing issues in hygiene involving bathroom issues, which were working on, and as challenging as things are I remain resolved in my determination to help him rise to his full potential. If you have any suggestions for us we live in michigan. The stories of your committments to your childeren and your unyeilding resolve are inspiring. As a dedicated parent I thank you all.

    Like

    • We admire you so much. We love talking to other parents who have that “never give up” attitude. We felt so sad to hear of your son’s regression and can identify so much with your pain. We are horrified by the people who’ve told you to put your son in a home… shame on them. Never give up your determination to heal your son.

      We want to help you in any and every way we can. We are not sure if you’ve read our posts telling “our story” which details the interventions we’ve tried or if you’ve had a chance to visit our website (www.healthinducedautism.com) which lays out a protocol that helped our kids. Please email us privately (if you want) at ventography@gmail.com and ask us questions. We don’t live near Michigan, so we are not aware of specific resources in your area, but we can certainly comment on many interventions you may be considering. Molly has tried HBOT and almost did neurofeedback. We are both very curious about brain balancing and vision therapy. Please keep in touch. -Molly & Leah

      Like

  4. My son was different since he was little. Everyone blamed me. He doesn’t want his hands in dirt because he’s a ‘girly boy’ from being raised by a single mother. He throws raging tantrums because I am not with is father. He acts like that because he goes to day care. You are a bad mother for working full time – you are letting others raise your child….that’s a small list of the comments from others. I was very young, on my own in all aspects of life, and really struggling. I tried talking to doctors and my family about my son’s odd behaviors. They all, including the doctors, said it was my fault. I just needed to be a better parent. I was a young single parent and got judged much more harshly than other parents because of it. I stopped talking to people and stopped seeking help for many years. I felt so isolated. I took the blame they all gave me. I read books about parenting. I implemented all the techniques and was consistent about everything, to still be told I must just not be doing it right.

    I felt like the worst parent in the world. I was trying so hard, but I was so miserable, which made me feel worse. Why wasn’t I enjoying being a parent? Why was this so hard for me? Is this really what parenting is like? Why do other moms seem so happy? Yes, it must be me.

    His behaviors were odd and disruptive to some aspects of life, but he was extremely smart. He did not have any behavior problems in daycare or in school. I decided to just accept him as he is.

    Throughout the years, things got more concerning. I thought he was just gifted and gifted kids are usually kind of strange. I put all my effort into nurturing his intellectual needs. By age 7 he was having extremely violent rages that would go on for up to 6 hours, 3x a week. By age 8 he was threatening suicide. This is when I took him to the first psychologist.

    After a few years and many diagnosis, many thousands of dollars and many doctors later, we received the proper diagnosis; PDD-NOS, Sensory Processing Disorder, Mood Disorder-NOS. It was just in time because it has gotten so bad that I was facing having to quit my job to care for my son. Being the sole provider for my family, this wasn’t a good option.

    I had prepared myself for a dx of bipolar disorder. I was not mentally prepared for this dx.

    The reaction from others was very mixed. There were some “Ah-ha! That makes so much sense now!” to “Are you sure? Maybe you want another opinion” to “He does NOT have austim. I have a friend who’s kid has autism and I know all about it and your son does NOT have it”.

    Guess what? Suddenly many people feel bad for me…they want to help. Why couldn’t they help me with him for the past 9 years? Why now that we had a dx is there suddenly sympathy? Nothing had changed other than having a dx. I was resentful of people who suddenly wanted to help. I was resentful towards parents of NT children. I was resentful of all the people who criticized me.

    I was even more isolated then. The financial burden of ‘alternative therapies’. The thousands of hours of research on how to parent him and what medications and supplements would help. The endless appointments. Constant problems with the school. Even with the dx, the doctors could provide very little information in terms of a plan. I had to figure it out myself.

    To complicate things, at the same time we were getting his dx, I had another child and ended up raising two children on my own. Within one year I had another baby, I was getting divorced, bought my first home, dealing with 6 hour violent rages, got the PDD dx, dealing with my younger son’s health issues, and was getting about 3 hours of sleep a night. I became extremely depressed. I gained weight. I stopped showering. I could care less about anything other than getting through the day.

    My second child had a mysterious health problem. He stopped growing at a year old. He also started having seizures. Here we go again. More specialists, more endless appointments. EEGs, MRI, x-rays, neurologist, pediatrician, endocrinologist, hundreds of hours of research. I got the same reaction about my younger son’s problems as I did with my older son’s problems. “You just don’t know how to feed him” to “You’re short, so he’s short” to “You’re just looking for something to be wrong with him” to “I don’t understand why you are putting him through all these tests” (as if I had ordered the tests myself…).

    I was so depressed and isolated. Every time I tried talking to someone I was criticized. Criticized for putting my older son on an anti-psychotic medication to stabalize his mood so he didn’t commit suicide and criticized for putting my younger son through all these tests. I stopped talking to anyone. I always felt worse after I confided in someone.

    My older son is now stable. He still has his moments, but I consider him recovered. I take full credit for his recovery. I recovered my son from PDD, SPD and his Mood Disorder. I am proud of that. How many parents can say they cured autism? I can.

    My younger son received a dx of growth hormone deficiency and is on daily growth hormone injections. He is very healthy now. No more seizures since starting the medication.

    My life is still getting back to normal. We are almost there. It’s our normal, not anyone else’s.

    One day I was in the waiting room at my PDD son’s vision therapy appointment. There was a mom there that I would chat with every week. This particular week she started complaining about this kid in her son’s school that was such a menace and how bad the parents were. She said the kid has autism, but still….the behaviors just come down to bad parenting. I let her talk and I listened. Then I told her that she shouldn’t blame the parents. I briefed her on my story and what I had gone through with my son. I told her how I have been judged many times just as she was judging the parents of this child. I told her she has no idea what the parents are dealing with. She never talked to me again.

    Many people still treat me like an idiot parent. They give me stupid advice. My response is that I have been a parent for 12 years now and I know what I’m doing, thank you very much. I do know what I’m doing; they don’t.

    We are no longer isolated. When I have the opportunity to educate someone, or share my story with someone who might be able to relate, I do. I don’t push it though. If they aren’t open to it or try to argue that my son’s dx isn’t right, I am polite, but I stop talking.

    From the outside, I seem put together and like I have a great, blessed life (other than the single parent part). I have two special kids (now 3 yrs and 12 yrs), two dogs, a cat and a house I purchased all by my self. I have been through hell and back. The time, money and research I put into my kids was worth every second and every dollar. They were given to me by God because He knows that I will take care of them and get them everything they need NO MATTER WHAT. As far as I’m concerned, anyone that has a problem with me or my parenting or my kids can go screw themselves. I trust myself and I know what I am doing.

    I went from being a guilt-ridden, insecure parent to one that is full of confidence and pride. It has been a long journey but we made it through what was, hopefully, the hardest part.

    Like

    • WOW!!!!!! Thank you for sharing your soul with us. This is exactly what we want other parents to hear. You are an incredible mom! Your children are so blessed that God chose you to be their parent. You truly have been to hell and back. We are so sad and angry that you have been criticized and judged by people who are oblivious to what you’ve been going through. We too often wonder why a diagnosis makes such a difference to people.

      Thank you for being gutsy enough to share your story. As a side note, we’d love to hear details about how you recovered your child from autism (as this is our biggest dream for our children). We understand you may not have the time or energy to share, but if you are willing, we’d love to know anything you want to tell us. You can email us privately (if you want) at ventography@gmail.com. We also wanted to ask you if you’d ever consider writing a guest post for our blog. We think you have an amazing story to share. Thanks again for taking the time to comment. -Leah & Molly

      Like

  5. Pingback: Take the “Shine”Challenge | Outersparkle's Blog

  6. Great idea….Even though my son is an adult now…I can remember feeling all the feelings written in this first blog. A lot has changed over the years….but the feelings of isolation still ring true. Looking forward to hearing more….

    Like

  7. I think other parents believe that I’m a bit authoritarian…but without a schedule, my son would probably fly apart without someone to keep him on task. I would love to have a hand with him at Church in particular-but everyone thinks it’s a parenting issue or a discipline issue or “he’s just a bad little boy” issue instead of actually asking me, “can I give you a hand? You look like you could use some help”. (I’ve heard all of these at one time or another-I’ve even been offered books on discipline.)

    Like

    • Yes – we would be viewed as authoritarian and rigid schedulers as well. Too much down time is not good for our kids. I (Molly) have the same problem with my church… so frustrating! In fact, I’ve asked them to start a special needs ministry to help me (and others) and they turned it back on me and said “Great idea – why don’t you start one?” I don’t feel I have the time or energy to do that right now. I need the ministering myself! We get so upset when people think children with autism need better disciplining… it’s so much more complicated than that! -L&M

      Like

  8. What I struggle with the most is the very people you turn to for help ask if you’re ‘sure’ your child has autism. Then find ways of making the autism symptoms and the way of life with an autistic child seem ‘normal’ or slightly differing from the norm. Instead of helping, they’re just forcing the parent further into isolation.

    Like

    • We love the point you’re making. It sounds like you have a child similar to ours – what we call “in the middle”. Children in the middle are not severe enough for everyone to recognize that they need help and yet, they are not “typical” enough to be able to attend regular school (without help) and do the things neurotypical children do. We really empathize with you. We are going to be doing a post on this soon so… stay tuned! Thanks for reading. -L&M

      Like

  9. I have a different point of view, If as parent we are tired of educate, explain or share about autism. It is because we are trying to let everybody know about it. As a mother is difficult when you explain and people still insensible, it make me, heartbroken. Sometimes I see Adults with special needs and think about my son. It make my cry (silently). When I see how people mock them, oh boy! So, I will keep trying and educating people, but sometime we need a break. I need privacy and take control in these uncontrollable world of autism.

    Like

    • Yes – it is so heartbreaking when we make the effort to explain and people still don’t get it. We understand your point that privacy sometimes make us feel in control when everything else is so out of control when it comes to autism. Thanks for reading. -L&M

      Like

  10. Not only end the secrecy end the fear. Most people are afraid to help others they do not understand. Some people can’t even help themselves. I have people in my own family that say nothing and do nothing. One has to remember to tend their own backyard. If one can keep the beautiful flowers healthy and growing the seeds will spread to all unsuspecting gardens.

    Like

  11. I’m so in on this one! Wendy

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s