Do You Provide Your Child's Autism Therapy Yourself?
Of course, not every family is attempting to pay that cost out of pocket. Between insurance coverage, school programs and state programs, many forms of therapy may be available at low or no cost to families. But for the most part, these therapies are not implemented by people with extensive training or plenty of time to devote to your child's individual needs. Rather, they're often harried professionals (and paraprofessionals) who may have relatively little training, time, or ability to individualize their therapies to the children they're serving.
What's more, the therapies provided by public services may not be the therapies parents want for their kids. Setting aside controversial biomedical interventions (which are almost always provided out-of-pocket), many parents want to see their children engaged in intensive sensory integration therapy, floortime therapy, relationship development intervention (RDI), full-scale social skills curricula, and more.
To ensure their kids get the therapy they need at the level they need it, many parents are doing it themselves. In some cases (floortime, RDI, SonRise, etc.) the therapies are actually designed to be implemented by parents. In other cases (Applied Behavior Analysis, sensory integration therapy, social skills therapy), parents are either learning on the job or actually receiving professional training.
Are you providing your child with therapy or therapies? Which therapies do you provide yourself? How did you prepare yourself to provide the therapy? Is it working? Share your experiences!
Comments
I suppose it would be nice to just be a parent, but when you have a child with autism, the parent is the on-going example and model for the child.
I did not choose RDI due to money issues. I chose it based on the concept of what it can provide and that it makes my modeling more effective, plus is was more a natural setting. I did not attend a seminar, I bought the book, joined online groups for support and the RDI news letter.
RDI tries to get at the heart of autism, teaching dynamic informational processing (relative
vs. absolute processing) and establishing social referencing and regulation that is so important for all social learning. In a nutshell, RDI teaches the child to connect socially and emotionally with others, and to welcome living in a life of dynamic change. Whereas other therapies teach social scripts, or discrete behaviors, many autistic kids never understand the meaning of these scripts. RDI teaches social motivation underlying our basic need to relate to others. Neurologically, it means establishing neuro-pathways between the frontal cortex (executive functioning) and Limbic (emotion,motivation) parts of the brain, so that the child’s information has emotional meaning.
What RDI has helped with is being there during peer play, and as a therapist would, make suggestions to my son. For instance, instead of his statements of what he wanted to do, suggestion to him to ask what the peer wanted to do. Also, it has helped with flexibility and sudden changes and how my child can deal with those when they occur. These days they’re much more excepted without a major melt down. Instead of avoiding some fears, I brought them right out, like balloons popping and the smoke detector. Eventually with the smoke detector, I was then able to get past the feat of the noise and on to what we’re suppose to do when it suddenly goes off. The best thing I think we’ve achieve is instead of my son’s interests running the show, he can now have an interest in others and to ask them what it is. RDI allows parents to feel adequate and competent again than always relying on an outside therapist to provide for their child.
RDI is worth looking into. It can be used along with other interventions as well.
“Why is your child autistic” video.
http://www.youtube.com/watch?v=StZq-hbdzgE
http://www.youtube.com/watch?v=StZq-hbdzgE
PhilCommander is the dad with the video’s I mentioned in another topic, of RDI in action. A great place to start.
My son was diagnosed 18 months ago. We have spent tens of thousands out of pocket for ABA therapy. The state of florida provided around 10 hours a week and we had to fight for that. We did mediation, and due process and now my wife is appealing the due process. Our insuramce that we pay $1000 a month for a family of four will not pay for therapy. We are living off of my income and a shrinking home equity line of credit.
My wife loves floor time and is able to engage my son better than I can.
My son turns three and all the state paid therapy goes away.
Bottom line is that the state of florida is a poor place to get help with an autistic child.
We have no choice but to do it ourselves. The government, medical community, and the media have all but turned their backs on us.
Your not going to get the desired results from your survey because parents are getting fed up and becoming recluse. Why would we sit and listen to NPR(who I love) tell us that vaccines didn’t make some impact or the type of food we eat don’t have some impact. The parents know the facts. And the facts are overwhelming!
How many of you parents out there have had the doctor try to put your child on lifetime MiraLAX treatments. Or have the media tell us that we are all looking for sympathy.
We homeschool.
My wife doesn’t work.
All treatments are paid by us, not my medical insurance from my union job.
90% of all marriages with a disabled child end in divorce.
We don’t whine, we just pray that it doesn’t happen to one more child.
I normally wouldn’t have answered your survey, but I hope to reach some young soon to be mothers out there and show the real dangers of our modern day world.
The way I see it your trying to make money off of our kids disabilities.
That proves that autism is a real issue affecting a larger amount of people than you realize.
NPR has a history of bashing families with autism, if you don’t believe it then look it up, I did.
I’m so sorry about the NPR statements in my last post.
I had been researching on NPR’s website about autism and vaccine links and thought it was another article. I should have paid closer attention.
Completely my fault and I apologize from the bottom of my heart.
Doug
Doug~ some times autism just happens, as it did with my child and many more like him. Warning new parents of the present day dangers may not prevent a thing. They still may have a disabled child born to to them. Also, most times you have a disabled child, you’re going to have out of pocket expenses more so than of other families.
Doug – not quite sure why the NPR stuff is relevant here anyway: I have no connection to NPR! But no biggy.
I DID want to note two things, though.
One – that 90% divorce rate you cited is a bit of a boondoggle. I’ve researched it, and while divorce among parents with kids with disabilities IS higher than among parents with typical kids, there IS NO research that I’ve found that looks at divorce rates solely among people with kids on the autism spectrum. I suspect someone made that figure up and it got passed around the web… It’d be very tough to measure, too, since “autism” includes such an incredible range of abilities. Why would parents with an Aspergers child, for instance, divorce more often than parents with an ADHD child?
I also wanted to address the issue of Floortime. We were and are to some degree still a floortime family – and it has certainly been a very positive experience (nearly for free). RDI is also very popular among homeschoolers, and seems to be easy to integrate into a homeschool program (again for low cost, certainly relative to RDI).
Best,
Lisa (autism guide)
Its’ difficult enough to explain autism or autistic characteristics to another parent, when they are not experiencing it.
It’s even more difficult to find the right treatments that help your child. Good article.
Our son is 3, diagnosed with Autism Spectrum Disorder, and was recently enrolled in a Florida ESE Pre-School. I have been trying to simply be allowed go to his classroom, and that has been strongly discouraged. I have looked a LOT at approaches to teaching my son myself and I am probably going to do so. I believe that I can teach him speech and occupational therapies. Through those therapies I believe I can teach his basics in vocabuly and beginning academic concepts, etc. gradually progressing toward school goals. There seems to be more and more information available to support/guide parents in that effort. The costs for therapy are inflated and excessive and to me make no sense whatsoever. My speech therapist was paid $80 for a half-an-hour session (by my insurance and the government) and she did not want me anywhere near her classroom. We switched therapists to one who brought our entire family into the classroom so that we could all learn to work with our son (more of a 24/7 approach). There are too many assumptions today about the “cost” of everything. With the amount of information available to motivated parents, those who want to can make a considerable difference without spending $70,000.