Should Autism Parents Have to Become Therapists? What's Your Opinion?
Parents of children with autism may not diagnose their children. But once that diagnosis is complete, it's up to parents to research the treatment options and select those they personally feel are most appropriate. Once they've made the selection, it's not unusual for parents to actually administer the treatments.
That's tough enough when parents choose to put their children on special diets or supplements. It can becoming overwhelming when the treatment of choice is hours-a-day interventions such as SonRise, Floortime or RDI (Relationship Development Intervention). Some parents even go so far as to get training in and provide their own child with Applied Behavior Analysis.
As it happens, I chose to use Floortime therapy with my son. Like many parents, I read the books... attended the conferences... watched the videos... and did my own thing. I worked with my child for hours a day, twenty minutes at a time, entirely on my own. I saw results - and so I kept at it. Had I chosen to, I could have hired a consultant (at $150/hour, NOT covered by any insurance I'm aware of). After trying one or two such sessions, though, we as a family decided to go it alone.
Recently, I've been in conversation with an RDI therapist who explained that RDI consultants really don't work with children at all - but instead train and work with parents so that the parents can work effectively with their children. Like Floortime, RDI is not covered by any insurance; and, like therapists trained in every one of the behavioral and developmental interventions available, RDI consultants charge thousands of dollars a year.
Of course, parents can get involved with RDI (or SonRise, or ABA, or...) as I did: read the books, watch the videos, attend the conferences, and do your best. I must say that, at the time (when my son was smaller) I really did feel good about my work with Floortime, and had no qualms about taking on the role of therapist. And at that time, while I would have liked a consultant to help me along, I simply didn't have the cash - nor, perhaps, the intense desire - required.
Now, though, I find I'm indignant about the ways in which autism therapy is provided. WHY should parents be expected to become therapists? WHY do therapists charge such a fortune (and it's very rare to find a therapist with a sliding scale)? WHY are doctors so unwilling to suggest specific directions and provide parents with resources and names of recommended therapists?
Many of you are doing just what I did: you're acting as therapists to your children. How do you feel about your role? Is it reasonable and acceptable to you - or do you feel that it was the only choice available given the cost of hiring an outside consultant or therapist? Share your thoughts!
Whether we like it or not, parents are therapists to their children. It might not be a conscious process, we might not be well trained or trained at all, but… we are teaching children how to go through life, advising them in how to deal with problems and react to unfavorable situations. When it comes to children with autism, being a parent (and thus a therapist) is even more difficult – there’s so much more to understand and deal with, there’s so much more that your child needs. Yes, I’d like to have someone there helping me (and I’d like to be able to afford it), but I don’t want someone else to raise my child for me. Which means that I’ll do everything that I can.
There is another way to look at this. All parents have to find the best ways of teaching and socializing their children. Most new parents read books and articles, consult with other parents, ask advice from doctors. But because a common neurology can be assumed between parent and child, the work feels very instinctive. Not so much, perhaps, when the child has different needs. More education for the parent is required.
Enter the “expert.” Some of the therapies, (or the basis for them anyway) you mention here would be very instinctive, intuitive for someone like me. “Floortime” is just an elaborate way to construct following the child’s lead. I could change a few things, give it a new name, write a book, do a lecture tour, and sell it to you as something your child absolutely needs and will never succeed without.
However, that wouldn’t be ethical.
I see the problem not as kids needing expensive therapies so much as the parents needing some basic instruction. Too many “experts” are lined up waiting to sell their particular expertise. To make money on this, it is called therapy. Really, it’s just parenting.
Historically, all psych treatment of children has been via the parent. Until managed care came around, if a child was suicidal, depressed, violent, etc, family therapy was the treatment of choice. And like Alzheimers, Schizophrenia and other neurocognitive diseases, the focus of treatment needs to be on the behavior (as opposed to old fashioned talk therapy). Doing 1 hr of behavior mod. in a therapist office isn’t going to make a dent in the problem. In lieu of sending an autistic child to a residential setting, the best alternative is for the parents to engage in the behavioral techniques needed.
To have a more natural setting, I think parents are best being the therapist for some things. Kids generally would spend a large portion of the day with the parents and family and parents can be the best modeling therapists there is, and having the best end results. You also don’t have to worry about the ‘other’ therapist taking a new job else where and hoping your child connects with the new one.
The whole thought process that you ‘need’ a therapist, instead of you also being one to help your child needs to change a little. I can see when the child is in school, the parent lets the therapist do their jobs however with a child with autism, the intervention should not end when that therapist goes home. Intervention really is all hours of the day and night the child is awake- for my at one time it was 20 hours a day until my kid started sleeping.
There’s a market for many interventions for autism and in the private sector, it’s an open market due to the demand. Many things were covered under our private insurance however if you have so many back to back or for long hours of the day, when does the child just get to be a child? At age 4, that was what I asked myself. Do I add more interventions or do I wing it and let my son just be a kid for a while? Then I found info on RDI which is parent-based. RDI becomes as natural as redirection does or how you avoid things you know to avoid. I never had an RDI consultant, bought a book and joined an online group and the RDI site news letter. There’s also people out there who put on video RDI in action with their own child for others to view. A parent is going to interact with the child, why not make it a benefit and productive? RDI enabled that for me.
I have no regrets about being therapist/ mommy. In no way could I be therapist/ educational teacher and mommy LOL! I drew that line! But I’d had taken whatever role was needed, be it changing tubes and pee bags to therapist teaching life skills to my child (which every parent does anyway) but we do it with a twist and a turn.
I agree with you, Lisa, I think it’s a strange world we live in that we expect parents of an affected child to “figure it out” on so many levels. Not only to sort through the myriad of options on therapy without professional guidance — our pediatric neurologist who specializes in autism didn’t offer any help in sorting out treatment options. And mind you he charged a hefty price tag of $350 an hour without taking any insurance!!
We have plowed LOTS of money into ABA therapy, and it’s making a big difference. After a year now, we are starting to cut back on formal “therapist” hours and doing more of the hands on work ourselves. We’re doing this mostly because we can’t afford the out of pocket of 30 hours per week. But frankly I’m worried sick that the progress our son’s making will regress if we’re not skilled enough. And we’ll end up blaming ourselves for not sacrificing enough.
So, while I applaud all those parents for whom autism therapy seems to come naturally, I don’t agree that our society should continue to force every family stricken with this illness to buck up and “figure it out.” There’s simply too much at stake!
of course they should. Their kid is only their responsability!
Sounded a little cruel??
I know about autism.
My grandson is autistic, unlike the Movie Star that makes all the money with her “autistic” child… that wasn’t autistic at all! His name is Kevin.
His Mom, my daughter-in-law, is an angel. She never expected someone else to be responsible for her kid.
She home schooled him because, if you have an autistic child, you know the child is never really welcome anyplace. Wow… is that an understatement? Kevin was kicked out of everything.
Autism is a brain development that requires time to develop. Not having some reaction from a vaccination and then 10 seconds later the child is Autistic.
Of course Autism is a genetic thing and I have known for a decade. Isn’t it amazing that some of the “experts” are finally working it out! The same thing that causes all the more than 8,000 known genetic diseases the synthetic chemical interrupters that cause gene mutations causes it.
What else besides our genetic makeup develops each of us from a fertilized egg, builds all our organs, and maintains us throughout our existence?
My grandson graduated from high school last year and God has done a lot of miracles for him. We went through all the screaming, banging the head, learning to repeat one word, two words, three words, isolated from the world, but I kept saying… He is in there.
Kevin is also legally blind… I know about Autism
Sorry, I was in a rush and put “His name is Kevin” in the 1st paragraph with the movie star information. Kevin is the name of my grandson.
Again, sorry about that
Lisa, you touch upon a number of important issues. The cost of effective therapy for autism (or even for ineffective therapy!) is astronomical and, more often than not, comes out of the pockets of parents. Your readers might want to know that a number of states are now putting out bills to have medical insurance pay for certain effective therapies, most notably applied behavior analysis, up to a certain number of hours. As expected, the insurance companies have been fighting this, claiming that ABA is still “experimental” despite nearly a dozen published peer-reviewed research studies focusing on the effectiveness of overall ABA treatment programs and over 600 studies that have investigated the effectiveness of various specific teaching techniques in ABA. It raises one’s eyebrows to learn that, although ABA is called “experimental” as a therapy, acupuncture and various homeopathic remedies are covered by some medical insurance companies despite the fact that there is not one controlled study demonstrating these strategies to be effective for any medical condition.
As far as parents becoming therapists for their own children, a recent New York Times story chronicled how close to 20 parents of children on the spectrum had decided to become therapists and receive training in ABA so as to provide better services for their own children. As a professional in the field I have never expected parents to become therapists. It is, however, unbelievably inspiring to see parents do so. One of the parents said something to me that I will never forget: “Ken, you chose this field and you can go home at the end of the day. I didn’t have a choice; this field chose me and I have to listen to the call for my child.”
I agree with the statement that we as parents are always therapists.
I’ve been asked as recently as today “how do you do it?”
There is no magic formula, you just do it, whatever “it” is.
My autistic son was #2 out of 4, and all of my kids have benefitted from us taking a more therapeutic approach to parenting in general. Floor time therapy lead to most playing happening on the floor for siblings, “Circle of Friends” was encorporated with siblings so they could learn how to play with their brother, and he with them. Because we were so used to explaining everything in easier terms as to how things work in life i.e. the infamous question”What’s that?”, all of my kids have benefitted from those explanations. With doing speech therapy with my son, again, my other kids are more articulate and know how to play and have fun with words.
All in all, most therapy approaches can be encorporated into an every day lifestyle if you would like to see it that way.
Kids with medical issues do have the benefit of more doctors on hand, but the parents still have to do a phenominal amount of work too, keeping track of medicines, reactions, keeping track of when the medicines need to be given and everywhere they go, they have to keep in mind that theyneed a place where medicines can be given. Just because doctors help them out with prescribing, doesn’t mean that those parents don’t take on a nurse’s role.
My peanuts’ worth anyways
Cheers
Caroline
It’s not always a matter of money. Were I live there not a lot of people offering services even out of pocket.
I get an OT once or twice month and a speech pathologist every few months because that’s how much those experts come into town. The OT has been supper supportive of my play therapy and has left me with sensory activities.
My husband has been supportive.
A teacher trained me in ABA just because she thought more services should be being provided for me. This wasn’t part of my iep she just offered.
As someone else said in another post. Do it yourself is not do it yourself.
My results were just as good as if I spent loads of money.
The best part was I made it fun for both my children.
I meant Do it yourself is not do it alone
Wow…a lot of different opinions on this issue. I personally would love help in the department of what is available…what is best for my son. Of course I have done research..read…and struggled with the doctors to not put my son on meds except for melatonin to help him sleep…at least for a while. My son is deaf…and has multiple things going on with him besides just autism. I’m a divorced mother…and I have raised my son Storm on my own…since my ex plays no part in our life…He and his family act like Storm doesn’t exist…and I have no family. So I’m completely alone in this world doing the best I can. The one thing I can say…Storm is the most happy child you can imagine. He does have self injury issues though…when he is stressed overtired…overstimulated…transition and numerous other things. So ….YES…I would love to have someone help guide me..and for me not to have to try to figure it all out on my own. Thirteen years of not getting a night of sleep…brain can overload very fast.
Storm is 13…but more like 3 or 4. He has taught me many many things.
I don’t have a problem with being my son’s therapist, but what has bothered me is that there have been so many times when I feel paralyzed because I know I’m not doing it correctly, he’s not improving, etc. I have had consultants from time to time but have never been able to afford having someone in permanently. And for Keith, I’m glad your grandson has improved so significantly. My son has not been so lucky. Perhaps the lead and mercury in his body are the reason?
While there are many different types of treatment out there – research is clear on two things: Autism intervention must be intensive and begin as early as possible. Research out of Santa Barbara demonstrates that training parents is an effective method because the intensity of treatment hours increases when parents know how to create learning opportunities in the child’s natural environment.
Not all parents, however, are emotionally ready to take on the huge task of becoming their child’s “therapist”. It is important that we remember it truly does take a village to raise a child and support those families that are not ready or able to take on the load themselves. Insurance laws are changing and will make that more feasible – it will not however replace the fact that parents really have to be partners in intervention!
First let me say that the movie star, ie Jenny McCarthy, was in the same boat alot of us find ourselves in; we have an autistic kid and are left to figure it out.
So, she has more resources than alot of us. Does that mean she should have done less for her son, so she wouldn’t offend others? Should we expect the same from other families with money, for example Katie Wright?
Of course the answer is, all of the autism parents I know work their hardest to help their children. They stretch their budgets to get supplements or special food or therapies for their child. I’m on the lower end of the financial spectrum. Although I wish I had the resources others have, I wouldn’t take anything away from their children.
I think the greatest tragedy of us all being left to sink or swim is there are many people out there who aren’t inclined or able, for whatever reason, to do much of anything for their children. These lost children are the ones who suffer most because mainstream medicine wants to pretend autism just magically appears and, once it does, nothing can be done to fix it.
Jenny McCarthy is outright offensive regardless of her income and contradicts alot in her interviews as well as being out right rude to other guests. I doubt her struggles compares to any of ours, autism or not.
There is plenty that can be done for children with autism, I’m not sure who cant do much at all and not all parents need to go beyond mainstream medicine to help their kids. Mainstream medicine in my opinion is not hiding anything, nor is my child ‘lost’ and he never was and if he was, it certainly wouldn’t be blamed on mainstream medicine. It would be blamed on plain autism.
A few suggestions…
Get the caustic home products out of your home…. All of them
Forget the air filters that at best just catch the caustic chemicals and recycle them in your home.
That will help with the genetic war going on in the kid.
Major important! Make sure the autistic child has peace and quiet… a peaceful environment. .
Pray a lot!!!
This web site might help
http://www.ourlifeline.net/whocares.htm
keithwren@comcast.net
Thank you Tracy!
I will rejoice with you when your kid gets better as well. I have spent more than a decade researching the whys. Genetic is not necessarily synonymous with heredity. Might be nice if it was… then we could see it coming.
In my opinion, working with an autistic child is a lot like programming a computer to help the thought process.
I call them “the smart kids”. In many ways they have abilities that we could envy, but none of us want the other things that go with it.
I am not too hip on therapists because of the training they receive simulates a “one size approach” fits all.
There are as many different types of autism as there are autistic children.
God bless them all!
Interesting!!! I just commented on this, again, today to my mother-in law and my husband. I am so fed up with the fact that as parents of autistic children, (WE HAVE TWO!!!) that we have to pay for everything. Everything being information, materials, all medical treatments including all therapy etc, and every single thing that has come our way since the day there were diagnosed!!! There are no freebies in this car ride at the fair!!! Even the crazy bracelets, car magnets, and puzzle pins are $5-$30 dollars each!!!!!!!!!! What the heck!!!! And why is it that there are not anywhere near the doctors, therapists, naturalists for the diets etc. that are trained in the field for hire and NO ONE WANTS TO GET TRAINED AND OR GET MORE TRAINING AND GET THE INFO TO AND THEN ACTUALLY SHARE IT WITH US FAMILIES. The therapists and doctors are charging an arm and BOTH LEGS to the families (insurance isn’t budging to include the DX anytime soon in covered treatments!!! (this is a crime and someone should go to jail in this coverup!!!) What is going to happen when these kids are 14-25 and then older. Who is and where are these now adults going to be taken care off. Our local gov. offices have adults with disabilities sleeping (or trying to!!!) in their offices as they have no place to send them (place them!!!). This is from a mother that stays at home and has no respite care and I take care of both these kids 24/7 365 days a year and just this year, finally has both of them been in school for 3 hours in the morning so I can at least get a shower or mow the lawn. I have attended every therapy session (damn near it!!) and can do it all!!!! I will raise these kids, but the answers have to be shared with the families and we have to stop being robbed of food out of our mouths and the clothes off our backs to just get a blasted paperback book on ABA or a box of gluten free pasta or having to call the State Board of education just to find out how the school system is being sneaky and not giving our children a lawfully appropriate education!!! My body needs sleep, more than 1-2 hours a night, and we need to drastically lessen the stress of our financial situation but a present I don’t see this happening. Your article is accurate, and we currently must be therapists and even though I can say that there are some very, very good ones out there and also some pretty good doctors they are not around every corner!! I have worked with tons and tons in this past 7 years and more were a “joke” then actually efficient and worth their $$$$$!!!
PS. Our kids are extremely smart, not only our opinion but told to us daily, and proven on all testing that has been done (doctor and school too!!) So, not only am I taking care of them (as I would do 100% autistic or not) but I am treating them too and this disability so there!!!!!!!!!!!!!!!!!!!!!!!!!!!to some of the comments above that were rather mean to the parents out there!!!!!!!! Walk a mile in our shoes, many do at our house and guess what! They sit down and then go “what the hell, this is crazy!!! And, then tell me I need help, and I say yeh, you go find it and then find it and the $$$ and pay for it for our kids!!!!!! No one ever comes back and knocks on the door to give us anything to help or even to just do what I do, again, for even one more day. We have hard time just getting the two grandmas to come over and babysit (and we pay them, including gas money now!!!). This is just pure crazy!!!!!!!!
Respond to Comment by CatEyes — June 24, 2008 @ 1:17 am
“Interesting!!! I just commented on this, again, today to my mother-in law and my husband. I am so fed up with the fact that as parents of autistic children, (WE HAVE TWO!!!) that we have to pay for everything.”
If you didn’t pay for everything, then who should?
Other people have their own kids and expenses. For other people to pay for your children, money has to be taken away from the people that earn it and given to you. This has to be done by intimidation by people with guns and threats of imprisonment for non-compliance. Called the IRS or state revenue collectors. Pardon me, but I like to choose the people that I help. As far as information not being free, I posted vital information right above your post that just happens to be free.
The autistic brain development in your two children did not happen because the baby didn’t have crazy bracelets, car magnets, and puzzle pins Why don’t you people all stop running around in circles chasing things that don’t work.
Genes generate the protein that makes up the structure of the brain. Gene mutations generate the protein that makes up the structure of the autistic brain.
You said “I will raise these kids, but the answers have to be shared with the families and we have to stop being robbed of food out of our mouths and the clothes off our backs to just get a blasted paperback book on ABA or a box of gluten free pasta.”
Take advantage of the information available for you that is free.
Again http://www.ourlifeline.net/whocares.htm
We will keep you in our prayers.
keithwren@comcast.net
Keith – I don’t understand what you mean by “for other people to pay for your children, money has to be taken away from the people that earn it and given to you. This has to be done by intimidation by people with guns and threats of imprisonment for non-compliance. Called the IRS or state revenue collectors.”
Obviously all Americans pay taxes – and taxes go to support a myriad of programs and services in this country. Those include a great many medical and support services for people with disabilities and their families. And so far as I am aware, the IRS doesn’t come after us with guns blazing!
Having looked briefly at your site, I understand your position is that parents are poisoning their children by using common household products. The truth is, though, that there are toxins in the air; in the water; and in the ground. Even if we used nothing but organic foods and household appliances, we would still be exposed to a huge number of toxins (some natural, some human made). And unless we hide out somewhere far from public roads, using no electromagnetic devices and avoiding all contact with the world (presumably living off the land but avoiding mercury in fish and so forth), I don’t see how we can avoid contact with toxins.
Of course, you won’t hurt your child by choosing organic products – but I believe that part of Catseye’s point is that those products often cost double what typical products cost. Not everyone has the cash to double their budgets, no matter how much they might want to.
Lisa (autism guide)
Actually, Keith has many valid points. And yes, I have walked in your shoes, Cateyes. Regardless of what disability a child may be born with, parents are going to spend more on their care than those of other children and are often financially strapped. ABA and GF/CF diets are mainly a choice, not a life or death choice. If a child had celiac, those parents would have to provide GF diet with no outside help to pay for it. Not everyone qualifies for respite either. Most of the bracelets, car magnets, and puzzle pins funds go to some good cause. I made my own and gave them to all my friends and family. As for private insurance, anything considered alternative, for autism or anything else, generally they wont cover but at the same time, that private insurance is based on a package prepared for the employer for the employee’s. One can not say all insurances are the same since ours covered anything I wanted for my child, other than alternative. I also quit my job to stay home with my child, who never slept and it was well worth me staying home.
We all make choices and have to make hard choices in life. Everything is going to cost something, most doctors are spendy for an office visit, and an RX w/o insurance is even worse. Maybe if parents were more proactive in their child’s therapy, that supply and demand for therapists wouldn’t make the price for them so high. Autism interventions over the years are trendy, which makes it difficult for one to even figure out which might be best for their child. Nothing worse than spending a ton of money on something to find out it wasn’t the right thing.
So, bottom line, spend wisely and don’t expect anytime soon to see free bracelets are car magnets or ABA.
Many of the statements seem all fine and dandy for a MARRIED couple! I wonder how many of the commenter are married and/or their ex is helping with visitation, etc.
However, back to realty; Mother of autistic child is single and MUST maintain steady employment. Step back; how might she actually provide IBI while trying to keep her child fed and clothed? .
Seriously folks, it would be ideal that we could all implement this great program that we truly are not properly trained to implement in hopes that we could actually help our child. In the perfect circumstance we would have ALL of the time to do so. However, the truth is that most marriages involving a special needs child result in divorce and then one parent is left to care for the child alone. Now imagine this family has more then one child. How might therapy happen then at say even the minimum of 10 hours a week of IBI, still maintain daily household chores, care for any other child/ren, and Work for the green paper? Oh, I didn’t even add in the personal time that all human beings require or SLEEP!
I for one am a single mom that has been stuck providing therapy for my daughter and also taking her to the OT, PT, ST, and multiple doctors for another serious medical condition and I cannot even imagine going back to work until we get an IBI agency in here. She is on a g-tube and our state has all these pathetic rules, so i cannot put her in daycare. FYI-almost no daycare is going to support an IBI program and if they do I wouldn’t want to see the bill.
Not to be cynical, but be serious and realistic folks!
Sorry for being so charged up, but sometimes it urks me that current society does not consider what is BEST for the child, not most convenient and cost effective!
P.S. I may have given birth to my daughter and she is my responsibility, BUT government created sicknesses are NOT! I firmly believe she wouldn’t be as sick as she is today if I hadn’t been coerced to stick her numerous times with toxic viruses that landed her in the hospital for weeks at a time after all series! You’d think someone would have caught on after the 2nd ER report stating “possible adverse vaccine reactions”. If not, the 4th sure should have!
I’d like to touch on RDI and why it is so important for parents to become the primary “therapists.” Children on the spectrum have developmental gaps some going back as far as infancy. RDI is teaching parents how to reestablish a “typical” parent child relationship where parents are able to reestablish the feedback system that was lost or altered with their children with autism. If you think about how typical children learn the things they do at that young age, it is taught to them by their parents. Who better than the parents to teach these things?
I love being my child’s primary therapist and so does his dad. However, my son needs more consistent support than we are able to provide, therefor, we need teachers to support his learning consistently and effectively at school. Also, in the home and out in the community he needs consistent and trained help to learn how to function in this world. He can learn if we teach him. However, the number of hours that he needs to learn these skills are beyond what we can physically do ourselves.
So, yes, Lisa, I do find it frustrating to be letting my son down because parents alone cannot support his needs without help. Effective treatment for other medical conditions are covered by insurance or other programs. As a whole, we had better get better at teaching and helping them get better whereever possible and not just supporting these kids. There are more and more of them every day.
Studies of children with autism have found abnormalities in several regions of the brain, which suggest that autism results from a disruption of early brain development while still in utero.
The absorption of those deadly chemicals is overwhelming to the immune systems and consequently is adversely affecting every bodily organ for you, for your family, and even more especially for the baby in the womb. The baby in the womb is at a critical window of vulnerability. In the nine months of gestation the human body undergoes phenomenal changes and its most rapid growth, making it especially susceptible to environmental toxins.
For the unborn baby, many different environmentally toxic synthetic chemical interrupters readily cross the placenta, which is the primary source of nutrients for the baby. It is through the placental circulation that these toxins may enter into the babies’ blood supply and are distributed throughout the developing organ systems. This does not allow the organs to develop appropriately. The end result is catastrophic.
While environmental toxins in the mother’s blood stream may result in enormous clinical effects in the mother, there may be much more detrimental, long-lasting, effects to the baby. As neurotoxins enter the babies’ blood supply, they can affect the specificity of the brain’s network of connections, permanently altering a child’s intelligence and the ability to development.
The EPA rates indoor air pollution among the top environmental health risks. The air in homes in America is routinely 3 to 5 times as toxic the outside air and can be 100 times as toxic.
Translation… If you pay attention to the news, people are combining household cleaning products to make a deadly gas to commit suicide and mass murder.
The stringent rules for carry on containers on airliners are to prevent exactly that same thing from happening on an airline flight.
One scientist said “We will be the only civilization in the history of the world that willingly destroyed itself”.
I totally agree, and nothing will turn it around.
Our home environment is the only environment that we have the power to change.
Quote from Lisa… “Having looked briefly at your site, I understand your position is that parents are poisoning their children by using common household products. The truth is, though, that there are toxins in the (outside) air; in the water; and in the ground”.
Lisa, that is all true for sure, but here is a little more truth… The EPA rates indoor air pollution among the top environmental health risks. The air in homes in America is routinely 3 to 5 times as toxic the outside air and can be 100 times as toxic.
I personally believe that rubbing those deadly products on your skin, wearing your detergent, sleeping in your detergent, is worse than the toxic air.
Our home environment is the only environment that we have the power to change.
Are we blessed or what?? Of the main sources of pollution… outside air, pollution in the water supply, and the ground, the only place we have the power to make appreciable changes just happens to be the one that is by far the worst, the environment in our homes!!!
Bottom line… everyone that gets those deadly products out of their home and start using products like we use in our home, regardless of their health condition, gets better… they all do.
more information here… http://ourlifeline.net/andbabymakes3.htm
I agree with Lisa that the cost of therapies are overwhelming, but in my case I have to say that I have found it very empowering and thus positive to learn more about my son’s therapies. Floortime has made me and my son reconnect and grow closer together. I understand so much better what his problems are and where he needs my help and support and we can actually have fun together playing again!
Auti-Land Mommy~ It’s always interesting when people bring up single and married couples and autism. Autism is difficult for either parent or parents. I was and am both. My son does have those visitation however they are not as pleasant as one may think for my son when his dad’s does not acknowledge his autism and the transitions are horrible. I cant begin to express the issues that arise from those visitations and my son.
Some marriages begin during the midst autism, as mine did. Although I now have a hubby, it doesn’t at all make autism any easier, or me getting more sleep. The human body does require a certain amount of sleep, and I was one that always needed my full 9 hrs. My son taught me never say never and it’s amazing how long a human body can go without sleep when you need to be awake for your child. My hubby couldn’t help with that lack of sleep and there often are times he doesn’t follow routines or rules that we end up paying for later. Divorce rates of a family with any disability are high, just not with autism. And it has to do with coping skills of the parents or more like the lack of.
I do not believe in government created sicknesses. Most parents have a choice about vaccines, and all it takes it to say no but it seems so easy to put the full blame of this choice on others.
In the end, regardless of typical child or not, some parents must work, some don’t. Some have active family members who help out as ‘therapist’, some don’t. But for the time at home a parent spends with their child with autism, you are the teacher, therapist and model for that child.
Well, all of the comments have some truth. All are addressing a larger problem than becoming a parent therapist. We are all involved in a major piece of history.This gigantic, international epidemic is in its baby stages of being understood and funded. We as parents are helping future parents get the help they need. It is a bummer but that is the time we are in. Our children and Our budgets will be underfunded and misunderstood. One thing I am sure of is that the future will hold the same basic information that we know now. The parent is the teacher, provider and relationship guide for their children, autistic or not. Learning how our children function neurologically is the crux of Autism. It is not any one area of the brain but rather the connections between them. This causes the absence of dynamic thinking. (among many other things) It is my intention to share with you what it means to be a parent of an autistic child and someone who got certified in RDI. I do not think it is possible to learn all that you need to learn and be a present parent. Exhaustion, grief and unemployment would become large hurdles in your life. Having someone who felt passionate enough to go out and learn what, why, and how this Dis- ease works and how to re-mediate it is exciting and hopeful. If I could do it for free I would. I need to pay for the education the technology and scads of other things to get the help to people they so desperately need. I could never have learned what I needed to learn to effectively help my son’s. Reading a book and watching a tape will not a normal life make. I want them to move out. I want them to go to prom. Have girlfriends. Get dumped, cry and call their buddies for a game of basketball. Prompt driven rehearsed and memorized is detected by all that are typical. It is never fun to fake it. As for the persons that think that all moneys should come from the parents, if we do not help our children now, you as the tax payer will certainly be funding their entire adult life, starting at 18. They grow up and move into a residential care facility or a transition program. They have one friend outside the family and they do not work even if they went to the University. Check the stats. Let us all dig in now. If this was your life and they were choosing what they could afford to get for you as far as real, honest, effective help, what would you tell them, that is if you were verbal? I hope for their sake you choose what they need and deserve for a shot at a quality of life we all take for granted.
I have heard of agencies who supply parents with in home respite care..actually train the parent
to be a LNA. Then hire the parent….and assign
their own child as a client. They receive a paycheck
and take care of their own child or are free to use that paycheck…and hire someone with specialty
education in autism , therapyist …so they have someone at home….So they are not really
doing the job they are ” hired to do” They are just basically getting a paycheck to use
to pay someone else.
How is this legal? never mind is it moral?
It seems like its sort of scamming the system?