I have worn glasses for many years...since the awkward age of 9 years old. I hated wearing them then, but now I use my frames as part of my wardrobe. It is fun to be funky sometime.
What I am getting at is that my vision is pretty lousy. Without my glasses, I cannot see 4 feet in front of me.
Yet, through my aging worn-out eyes, I see things others have a really hard time seeing.
I have been reading alot about autism lately. You really cannot help it....Autism is EVERYWHERE. I get recognized all over as the "Mom of the Autisitic children"...I like that one.
What I am reading disturbs me beyond belief. Every one is determined to find the cause of Autism...I have read it is too much television, not enough television, mother's, father's, age at time of conception for both parties, misdiagnosis (my personal favorite), over-diagnosis, genes, Immune Disorders, etc.
It really is becoming quite ridiculous and quite a little money-making scheme for alot of not-so-nice people.
Today, I read where one mother of an autistic child tells another mother to get a second mortgage on her home to finance her biomedical treatments and her DAN! doctor. WHAT????
Ladies and Gentlemen, you are the parent's of autistic children. They will always be autistic children. With maturity and much, much LOVE, your children WILL GET BETTER....I promise.
How discouraging it must be to lose so much time measuring and counting out pills, inserting suppositories, rubbing creams, etc into these children...and in the end you have an autistic child.
How discouraging it must be to believe that you are watching recovery on a big screen at a DAN! conference....and in the end all you see is a more mature autistic child.
My family has been involved with autism for 16 years. They have not always been easy. We have had all of the ups and downs involved with raising autistic children. We have watched these amazing children go from the worst autism has to offer to respected individuals in our community.
I DO NOT understand why parent's of autistic children have such a difficult time in dealing with the autism. The autism is a condition your child has, it does not define your child.
If you feel the need to define them, then purchase one of the tee-shirts that so love to label the child.
So THROUGH MY EYES....as poorly in vision as they are....I see a home full of the most amazing children:
I see:
Caitlin-my artist
Deirdre-my philosophist
Erin-my rock star
Meaghan-my governor
Patrick-my wrestling country singer
and
Kiernan-my sunshine on a rainy day
And that to me is so much better than 20/20 vision
About Me
- Mom26children
- I am the proud mother of 6 children. 5 of our children have autism. We do not feel our world has ended, but just begun. We do not chelate, intervene biochemically, give shots of any kind, practice ABA, etc. We treat them as we treat any humanbeing. We treat them with kindness and respect and expect the same from them. They are exceptional children.
Wednesday, March 07, 2007
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16 comments:
After 32 years of much love and maturity my son did not get better and is in an institution. Any words of encouragement on that?
Anonymous,
I worked with autistic teenagers in 1982. These young adults would be in their 30's today. They were instituionalized and drugged with many anti-psychotic drugs back then. They were not educated in the way autistic children are today. Doctors and educators did not know how to deal with autism then.
I am sure they are still institutionalized....
Fortunate for us, we have evolved and our children are getting the needed education and are drug-free.
I think often of the children I helped care for...I hope they are all safe now....I know they were when I helped take care of them.
My son wasn't institutionalized until he was 30. We raised him with respect, love, and gave him the best life that we could. When he nearly killed my husband with his aggressiveness it was time to let go. My son has never been on anti-psychotic drugs and was very well educated in the best school system our state has until he reached 21. Our system did know how to deal with autism in the 80's. They use many of the same techniques as they do now with much success with SOME children.
It didn't get better for my dear son. It got worse as he got older. I just wonder if you really think that all individuals with autism grow up to be like your children?
Anonymous,
I do not take well to people who respond Anonymously....I blogged about this previously.
I have 2 children in my home who may, at some point, have to be placed somewhere more appropriatley. I hope that is when they are much older.
My children are not older, they are still very young.
Do you think your child would have benefitted from the treatments used today...that were not used in the 1980's? I mean, chelation, biochemical interventions, ABA, etc????
I have much respect for you for raising an autistic child PERIOD...
I do not have respect for ANONIMITY....
I'm sorry I do not have an account and have never posted with an account name. Take care. -Karen
Mom26:
First- I empathize as a fellow myopic (BTW, if a "cure" was available for it, I would take it yesterday, even though glasses/contacts are a way of life for me).
I just wanted to clarify- are you bothered by the fact that people are looking for a cause for autism or just by some of the crazier hypotheses out there(like TV watching etc) ?
You say that autism is a condition your children have, it doesn't define them. I used to think the same thing- back in my cure-seeking days. Now I came to realize that autism very much defines my son- it colors his way of thinking, talking, processing his environment, relating to people, eating, walking etc. Has this not been your experience too ? I am not happy about it, but this is the way it is, and I will help him make the most of/with what he's got.
Correct me if I'm wrong, as I don't subscribe to much of the ND philosophy, but isn't the whole essence of it to not regard autism as a "condition", but as a person's entire way of being?
Because if it's just a "condition", then what's wrong with looking for a cause/cure?
Lillian
Hi Lillian,
I am writing about how I view my children. My children are not, in any way, disabled to me.
These children think differently than I do. They see the world differently than I do....what right do I have to say that is not normal.
I do have a HUGE problem with how autism is marketed. I think it has become big business and some parent's will spend every last dime to "undo" their children's autism and some "doctors" will take those dimes in the name of a "cure".
In our home, we have noticed great improvements with maturity. IN OUR HOME....
It is a condition, and it is difficult for me to deal with sometimes. But I have to say that
there are doctors and therapists and others that I have come across that take advantage of parents' hope and willingness to do what is best for their child. They have been fed information that causes them to believe that their child's life is a hopeless train wreck and there is no way their child will ever amount to something. So therefore, try this $$$ therapy and this $$$ vitamin and this $$$ cure. Now, if this stuff REALLY worked and cured children, why wouldn't it be COMMONPLACE for these children to receive these things for free? I mean, seriously. If it was only the result of a vaccine and chelation or Hypobaric chambers and drugs could help, then why aren't these things more in the fore front? It seems odd to me that these "cures" are a big secret and no one wants to discuss them with anyone who has a differing opinion. I was treated badly because I DARED to ask too many questions, and this is LONG before I made up my mind. I was still in the info gathering stage and was basically told, "if you don't subscribe to this thought then get out, we don't want to help you." Strange, when all i want is to be able to help my children succeed, just like anyone else.
Now, I am not saying there aren't situations (like anonymous)where something goes horribly wrong. And I think the point that Mom26 was trying to make (if I may be so bold as to assume) was that you just have to do the best you can, find what is special and unique about your children and celebrate it. See them for who they are, not what they have. If you had a "typical" child, you would do the same.
PS. there is nothing wrong with looking for a cure or cause, in my opinion, if there was truly something WRONG with my kids. But autism isn't something wrong, it is just one little thing about them.
Yes M-J,
It appears that discussing is not an option...you must agree to believe in the treatments.
That has been my problem since I started reading about alternative treatments. There are no answers...just listen to them and shutup.
I still believe parent's need to see both sides of autism...the biomedical side and the Neurodiverse side. Who knows, there might be a middle ground....MIGHT.
You know I have to repsefully disagree. While I can't deny the simplistic and often hurtful solutions offered by some, I would put forth that we are dealing with a very complex disorder, with many potential causes and 'cures'.
To give up on finding this causes is doing a disservice to potentially thousands or more that 'cures' (or better said treatments) could be implimented.
We could find treatments releiveing some of devestating side effects like the ones Karen has had to work through.
I can't completely discount ANY treatment out there simply because it does not work for ALL. ABA, like autism, is a broad definition which cannot be discounted in it's entirety. Discreet trial with negative reenforcers is not the standard practice of the day; much of today's ABA is closer to play-based therapy than anything from the 'old days'.
Many things have changed in 20 years, we now have semi-reliable detection strategies for very young children, we have early intervention strategies that show much promis; we have a geneome to explore and have found many potential indicators for autism. Who knows what the next 10-20 years might bring? Nutrigenomics might be an up and coming strategy to help autistics better cope with sensory inputs.
Again, I do agree we have to watch all those who are selling a 'cure', but I don't think that looking for a cure is in conflict with accepting autism...
Bill
Hi mom26:
Sorry, I didn't mean to step on your toes or make you defensive.
My question (largely unanswered) really has nothing to do with biomedical treatments or crook doctors etc, but for some reason, you always come back to these issues, even when the discussion seems to be of a much broader nature.
Again, I apologize, it's your blog and you write beautifully, I was hoping to move away from the "creams and shots" a little bit :)
Bill:
"I don't think that looking for a cure is in conflict with accepting autism..."
That sounds like pretty decent common sense to me, too :)
Best to all
Lillian
Hi Lillian,
Nah, you did not step on my toes...
The reason I started blogging is that whenever I tried to defend not doing biomedical, I was called all kinds of names. I was called neglectful on one forum, trashy on another....
I have never, ever called names to anyone or anybody.
I was trying to have a place where one could calmly show parent's of newly diagnosed autistic children what my family has learned in 16 years.
I love your comments...they are so welcome here.
Whenever I hear the word "celebrate" used in conjunction with autism, it always makes me scratch my head. What am I supposed to do, buy a cake? Unfortunately, DAN! is expensive because most people are used to having insurance pick up the tab. Insurance will pay for kids to be drugged but not to get to the actual root of the problem. Traditional medicine is really bad at dealing with root sources, preferring pharmaceutical bandaids instead. So parents are left with two choices, pay out of pocket or give up. Actually, in our case, my child is excluded from our insurance policy because of the preexisting condition of autism. I guess the insurance companies don't want to celebrate. So we pay out of pocket no matter what we do. I'll pay for biomed, thank you very much. Money comes and goes. It is JUST money. But all I hear in the ND movement is "blah, blah, money, money, biomed expensive, blah blah". My child deserves a shot at life, that is worth paying for. There are other recovered kids out there, just open your eyes and look.
googlybear,
My children are getting better without any prescription medications. They have flourished.
Yes, I will celebrate autism, because I celebrate my children.
Not doing biomedical DOES NOT mean "giving up". I have never given up on my children....they amaze me every day.
Jeanette
Mom26,
I should have phrased that better. I didn't mean that you have given up on your kids, just that some people are so daunted by the expense they "give up" on paying for alternative therapies out of pocket. Some people have no way to afford, so they end up "giving up" by default. We did for quite a few years. I don't think the traditional medical system gives our autistic children any hope. They placate parents by telling them there is no hope, just acceptance. I spent many years working in the field of developmental disabilities before having my children. It is unbelievable how many people with a developmental disability also have other physical or mental illnesses. Many times something is just plain gone wrong in the body and needs to be righted. I don't believe in programed genetic issues that are unavoidable.
To the anonymous above with the son in an institution. My heart goes out. Please look into some of the alternative treatments that are out there for your son.
my son is 7 years old and has autism. Lately he has been saying things to friends and family members that they find hurtful and often times offensive.He most recently caused his grandmother and her fiance to break up.He informed him that, "he was only in the way of his granmother", and to"get off the farm his grandfather had left him." He only done this because the man who my son likes very much mowed the grass in a different direction than normal.Afterwards my son was very distraught because the man had left believing he had heard an adult say something similiar.
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