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Autistic children and their familiesI am writing about a topic near and dear to my heart - children with Autism and their families. Did you know that parents of these children can lose the other children in their home because of the Autistic child??!! It is true and I know it to be true as it has happened to me!
Fact: Although there are methods of working with children with a Pervasive Developmental Disorder, MANY professionals are at a loss when it comes to these kids and what to do with them. They need to be kept updated, be required to be kept updated, as without such they cause more harm than good due to the mishandling of treatment with these kids!
Fact: It is difficult, if not impossible to obtain appropriate treatment for these kids because of the former fact.
Fact: As it in nearly impossible for both parents to work in a home with an Autistic child, most of us are flat broke with no hope on the horizon. SSI helps, but does not nearly cover the costs of dealing with these children.
Fact: Families of these kids are ruled by their needs. As social skills are not their forte, we are forced to live in secrecy, away from society. We have no privacy and conversations are controlled by their twistting of our words and spewing them out embarrassingly. There are no boundaries with these kids and parents have no privacy with them.
Ideally, parents of these kids will no longer be punished for having them in ANY way! There will be no custody issues of our "normal" children. We will be given the help that we need, via an aide in the home. If our children had health problems, we would be afforded nurses, qualified nurses, yet we get minimal help and are forced to live in a prison of our children's minds. We NEED help, a qualified aid, so that we can have a true family life, so that our divorce rate isn't so scary, so that we don't have to live like we are lepers. Our children need qualified help to insure their futures and they should have it without fighting from their parents. This country is neglecting the needs of these children. We, the families of them are sick of hearing "we don't know", when there is information out there. We are sick of having to search out agencies that DO know what they are doing with these kids because most don't. We are sick of watching our children disintigrate with the latter of these agencies! We are sick of being condemned to our lives when we KNOW there is help out there!
We, the families of the Autistic, invite you to live our lives for 1 month, and strongly feel that all agencies, government officials, involved with the funding of programs that DO help these children should live in our shoes for at least one month, so that they know what they are limiting, how they affect our lives! If you know whereof I speak, I strongly, strongly encourage you to open up your mouth and SCREAM!
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Right to Life
The right to life should include accessibility to prompt, adequate healthcare. No rich person should hold more expectation to a long, healthy life than a poor person can.
I always hear people talk about how great America is but there are countries in which the people who pay the bills have healthcare. It's one of their basic rights. It should be one of ours.
No parent should have to look their sick or disabled children in the faces and wish to high heaven they could do something more to improve the quality of their lives.
I will always believe that many illnesses/diseases are caused by under-regulated businesses and major corporations whose bottom line is all that's important. I think that these corporations and businesses should have to pay a healthcare tax which would be based on a ratio of percentage of the citizenry in their surrounding areas with major health concerns that could be caused by pollution/the cost of treating those illnesses. That tax should go to fund assistance for families like yours, with autistic children.
Or - the government should crap or get off the pot already, and realize that it's time them to stand up for healthcare coverage and it's time for HMOs and major phrama to sit down.
Do you mean to tell me...
...that when someone figures out a way to make cash IF they can get folks to labor for a low enough wage, then they will just have to settle for less cash?
And just so those who provide the labor and soldiering can have more?
I'm sorry but that attitude is only allowed within the upper crust.
The rest of us must continue to bitch about each other getting the crumbs.
Oh, and the gays. Or is it Blacks this week? Woman??? I can't keep track of which shiny object I'm supposed to be transfixed on.
Mechelle, my son has autism.
He's 24 now and falls in the high spectrum of autism.
Yes, we need help- especially programs that work with all of our kids,
including those who are higher functioning.
I have yet to find one.
I know how difficult it is- those " milestones" take a lot longer
and are much harder for them to reach.
I have never heard of anyone losing custody of child
living with a sibling with autism!
Is that what you are telling me happened?
That's outrageous!
We need programs for our kids that work, programs that prepare them for
the world outside of the home.
They need better social training programs,as parents we can only do
so much. We need lots of positive reinforcement from others who
work with them.
Please keep in touch- I care and I'm there, right now.
IN RE TO KWAHLF
Yes, I have lost custody of my other children due to my autistic child and his behaviors. and YES it is a NIGHTMARE! The current trend seems to be to leave the Autistic child in the home as much as possible, even if things are so rough and there is so little help that you become more of a behavior therapist and prison guard to them than a parent and lose ALL of your privacy in the process, let alone your nerves due to the high stress level... With Managed Crap, I mean care, it is even worse as they only want to pay for minimal services and then tell the parents that it is your child, you deal with it with NO WAY OUT! Yes, these things have happened to me, I speak from experience! And they claim that "I have a friend in Pennsylvania"! My claim is that it is difficult, if not impossible, to trust people and ESPECIALLY the SYSTEM! And most of the people involved are, you guessed it, REPUBLICANS!
On the Outside Looking In...
When my second son was born, I knew something was different about him. Breastfeeding was excruciating for at least the first several minutes each time he latched on, and he didn't stare at me the way my first son did. He also didn't enjoy skin-to-skin contact, and was very sensitive to sound, light, heat and other stimuli. Unlike his elder brother, who almost NEVER cried, Cameron would scream for hours and hours. I had to relocate him to the laundry room just so the rest of the family could sleep.
I read everything I could to see if I could understand why he was so different. I just couldn't find a Doula, Nurse or Doctor who listened to me detail my son's tendencies and temperaments. They would say such obvious things as, "Every child is different" or "It's really too soon to tell". I knew that there was something unusual about my son, and yet I couldn't get any medical professional to give me anything but a one-size-fits-all approach to health care and parenting. But, trusting my own instincts, I began to educate myself.
Before he was a year old, I had narrowed it down to Autism or Fragile X syndrome, a somewhat similar but much rarer disorder.
Though he didn't enjoy being touched, I touched him anyway. I hugged him, stroked his cheek and held his hand as often as he would let me. Initially, he pulled away, then gradually allowed my touch in increased frequency and duration. Even though he was born with an aversion to physical affection, in time, we were able to reverse that. Today, he is one of the most affectionate people you will ever meet.
I broached the subject of my diagnoses with my pediatrician, who told me that people are so quick to slap labels on things they don't understand, which, at the time, made me feel better. But when he was 2, and was lagging in some age-typical milestones, they sent him to be evaluated by the Spokane Guild's School, a nationally recognized neuromuscular facility. He was diagnosed as being "developmentally delayed" which I still regard as being a catch-all term for kids who have PDD, ADD, ADHD, and ASD.
In school, and after the implementation of an IEP, he began receiving the sort of attention that I had hoped--attention that began at the Spokane Guilds' School and Neuromuscular Center and was matched and then exceeded by the programs, services, care and education given to him by the staff and administartion of our own school district. Since then, he really has blossomed.
These children are far more overlooked than their other special needs counterparts because they often appear "normal" and fairly rarely require the sort of physical attention needed by many children, such as those who suffer from Cerebral Palsy or an obvious physical abnormality or deformity. To the untrained eye, they seem like any other child. The general public simply doesn't understand the behavior of these children. As if it weren't challenging enough raising special-needs kids, we as parents are constantly bombarded by useless or outdated advice and suggestions from nosy busy bodies whose need to spout unfounded and unpractical solutions routinely supercedes our needs to explain our parental policies and practices. A simple trip to the mall or the park can be a nightmarish prospect to those who routinely deal with the general ignorance of others. You may even find yourselves excluded from your own family's weddings and other events, based on the remote possibility that your child may cry and spoil their perfect day! No exaggeration--it has happened to me personally (even though my son is very high functioning and a very sweet kid). After confronting the Aunt who excluded me from attending my cousin's wedding, I promised myself I would never allow this sort of discrimination to occur in my presence. Now, I wouldn't so much as piss on that woman if she were on fire.
Since we are almost guaranteed to encounter hostile and ignorant people wherever we may choose to go, many of us opt to live relatively reclusively, so we can shelter our sweet children as much as we can. We stay the course, hoping someday the message will get out and people will begin to understand just hown common and pervasive Autism actually is. We hope for understanding and acceptance, but we don't dare expect it. All we can do is be happy within the confines of our own close-knit family, and hope that everything else falls into place.
I don't know what the future holds for my Autistic son, but I DO know that no matter where the road ahead takes him, he is happy and confident enough to venture forward bravely. And he knows that I will be with him each and every step of that journey.
Badsymbiote, thanks for sharing your story.
You state so well what many of us have been through and what we
are experiencing now. You describe my son, ( and myself) especially
in the last two sentences.
My son also has an aunt like the one you describe.
I remind him that it's her loss not to acknowledge him,
but it's still painful.
Thanks again, you speak for many parents of autistic children.
:-)
My son is autistic and this list is hogwash
Did you know that parents of these children can lose the other
children in their home because of the Autistic child??!! It is true
and I know it to be true as it has happened to me!
I have never, ever heard of this happening. When was this? Where? Who else is it happening to? What's your proof?
Fact: Although there are methods of working with children with a
Pervasive Developmental Disorder, MANY professionals are at a loss when
it comes to these kids and what to do with them. They need to be kept
updated, be required to be kept updated, as without such they cause
more harm than good due to the mishandling of treatment with these
kids!
The understanding of Autism Spectrum Disorder is advancing every day. It may take a little patience, but people can find help for their children.
Fact: It is difficult, if not impossible to obtain appropriate treatment for these kids because of the former fact.
Completely untrue. Even in a small, rural community like mine, there are opportunities available to receive help and at little, if any, cost. My son was diagnosed by professionals who came out to my area from a metropolitan area. They not only diagnosed him, but they told us how to get him the help he needed.
Fact: As it in nearly impossible for both parents to work in a home
with an Autistic child, most of us are flat broke with no hope on the
horizon. SSI helps, but does not nearly cover the costs of dealing
with these children.
We're a lower-class household - our combined income is less than $30,000/year, but the cost of helping our child was minimal. There are options. There are people who can help. And they are closer than you might think.
Fact: Families of these kids are ruled by their needs. As social
skills are not their forte, we are forced to live in secrecy, away from
society. We have no privacy and conversations are controlled by their
twistting of our words and spewing them out embarrassingly. There are
no boundaries with these kids and parents have no privacy with them.
This is just plain scare-mongering and completly untrue. My son and family are active and valued parts of this community. He loves school, sports and Cub Scouts and excels at all of them. He and we have lots of friends who enjoy our presence. There is no hiding him away, privacy issues, or people abusing our conversations.
Families with autistic children need our help and support, but spreading scare-mongering and blatant falsehoods like this is exactly the opposite of what they need.