Yesterday, I wrote about a man who is planning to sell his kidney to pay for his son's behavioral therapy. While I don't know all the circumstances of his decision, I can only assume that he feels it's the best and only option to care for his child's needs.
In response, a number of commenters noted that they felt a parent could reasonably read up on behavioral, sensory, social and/or developmental therapy for autism -- and do it themselves. The fact is, a great many parents are doing just that, many with good outcomes. I myself am a self-taught Floortime therapist, and while I'm no pro, I suspect I've done a reasonably good job for my son.
Here's what one commenter, Tom, had to say:
There are plenty of resources available for people to learn how to do the necessary therapies on their own. Applied Behavioral Therapy, Occupational Therapy, Physical Therapy, Speech Therapy, and Social Skills therapy all have books written about them which people can use to get the basics. With a little study, time and effort, no one need give up a kidney, and no autistic needs to suffer.Nicole Caldwell, of PositivelyAutism.com, recommends a mix-and-match approach:
I think that Tom is right, that parents and family members can often do many interventions themselves. In terms of ABA, I would still recommend that a family hire a qualified behavior analyst to supervise the program and occasionally check in with the family, but parents can do a lot to help their childen learn with this method instead of hiring many staff members.Have you tried DIY therapy for your child with autism? If you have, do you feel it's a good option -- or even a better option than paying out-of-pocket for expensive trained therapists?
If you're a therapist yourself, what do you think of the idea of DIY therapy? Assuming that most parents have limited financial means, how would suggest that parents provide therapy without bankrupting themselves?
I think the ideal is a combination of DIY-ing therapy and of hiring therapists—-a parent can get too emotional and not be able to best chart a child’s progress and learning needs. And parents are faced with an infinite array of “teachable moments” throughout the day, in which they can teach incidentally and in the natural environment. My understanding of ABA and of speech therapy techniques, sensory integration, VB, and a lesson or two from my own occupation as a teacher has enabled me to help Charlie learn to play piano, go to grocery stores and movies, and is why I’ve been able to start him on cello.
I don’t think a parent should DIY totally, or they’ll become burned out. A parent of a child with autism however becomes more than just a parent, they are the full time ultimate model for their child. So learning some of these DIY options can only compliment the child’s progress.
I chose RDI (relationship development intervention) that is parent/ family based and it became as natural as redirection did.
The key for any parent to remember is no intervention works over night. From the time my child started al interventions (public and private) I seen no progress at all for over a full year. Each child progresses at their own rate and as much as we’d want it, you can make that happen before the child is ready/ able. A parent also has to consider being able to provide such things for a length of time, so considering DIY can some times be an easier choice than considering out of pocket therapies however some therapies are not as expensive as other’s.
Since I went for 39 years as an undiagnosed female who is on the autism spectrum, my circumstances required me to DIY in relating to my condition’s facets.
Bear in mind that during the times in my childhood when my issues were extremely problematic, I did not know that I had AS. Nor did my family, my teachers and my peers — which made dealing with things even more traumatic.
I think, altogether, that I’ve turned out pretty OK and I really like myself. Knowing more about myself has made all the difference.
I would certainly advocate DIY based upon my own experience. But I wouldn’t entirely rule out the expertise of a professional.
I think that a team approach could be very beneficial if each party is willing to accept that there are other members of the team who can each make valuable contributions.
To paraphrase a line from “Birth,” a play about the maternity industry, I believe that the person who has AS should be the “captain” of the team.
I feel so deeply for this father. I gave up buying a home and an advancement at work just to take my son to various therapies that would not be covered under insurances. I would have to continue home therapy (homework) with my son. Although I can no longer afford a certain therapy I do know that I can do it at home if my son would cooperate. That’s the difficulty I am sure other parents face. He cooperates for his mobile therapist. I do hope that father finds some financial help. Some states do cover OT/PT and mobile therapies.
I think parents are more than capable of doing the DYI-therapy thing, but it’s not for all parents and it’s not for all kids.
What are the advantages? It can save a lot of money. The child knows the therapist. Parents also tend to feel that they are doing everything they possibly can (although not always humanly possible…and there is a difference)for their child.
What are some of the disadvantages?
The child may not work as well for a parent as a therapist.
The child doesn’t learn how to listen to others, and they can even listen to one parent more than the other (listen to the one who does the majority of the therapy, rather than the other), despite the same thing being said by both. Children need to learn to listen to a variety of people, and if the only people in their life is family, their social circle does not get developed. Therapists, if they are in the picture, are a part of a child’s social circle if the child is recieving therapy.
Over-extending of the parents…parents already have their plates full doing the normal parenting things, and outside of designated therpay time, are busy running their life as a giant therapy session just to cope with some of the behavioural challenges.
If there are other children in the home, extra sibling rivalry can result, because mom/dad are spending “more” time with the one child than the rest, despite the reality that it’s actual Therapy time. Siblings may see with their feelings rather than reality.
A lot of times, depending where you live, if a family member performs the therapy, the autism funding will not be allowed to be used to cover the cost(s), including paying for therapy materials.
It helps add to the “Super Mom/Super Dad” Syndrome, where the parents are seen by others, including gov’t officials that parents can do it all. Services can be effected, not only for the family who does DIY therapy, but for all families.
The danger of this last thing?
When Super Mom and Super Dad burn out, who is left to help them out?
Just because a child goes to a therapist, doesn’t mean that the parents are not expected to follow through at home with the therapy goals, which on its’ own is a huge task, never mind being the therapist themselves.
After writing all of this, I should actually read this back…because I am a DIY-Therapist. Why? Because it makes me feel like I am doing everything I humanly can, and my husband feels the same way. I can get my son to work with me every bit as well as the therapist could. I didn’t leave the therapist, rather she felt that she couldn’t really take my son too much further anymore so she thought it would be in his best interest for us to go with someone else. I am on a forever wait list now, and literally took off from where the therapist left off, and it is working out great.
I just do wonder when both my husband and I crash despite all the efforts we take for self-care, who will be left to take over where we left off?
Caroline
I think DIY therapy can work and a lot of previous comments have done a good job of pointing out how it can or cannot work.
But, there are parents (like myself) who are not capable of this for various reasons. Maybe they suffer similarly as their child. Some are not even diagnosed yet themselves. In my case, I am disabled from other physical ailments, so DIYing is definitely out.
I grieve for that man in having to come to that kind of decision, but I, myself, am beginning a home biz just to support EVERYTHING the insurance won’t. From therapies to educational advocates. Whatever can insure my child get a fighting chance against his difficulties, I am willing to do. Though I don’t expect the govt to cover everything, we do need more help. Possibly, more private funding could be made available. This may sound silly, but the Bill Gates and Oprah Winfreys of the world could stay closer to home with their philanthropic largesse.
I am a music therapist providing services since 1978 to schools and families in a cluster of small communities in north central Texas that has limited access to specialized services for people with autism. The families,teachers,and therapists around here are in the “do-it-yourself” mode, but, probably because we have all been in close contact over decades, everyone pitches in – sort of like a caring, extended family.
From my perspective as a therapist and a person who is deeply involved in the lives of many individuals with autism, several thoughts come to mind when thinking about DIY therapy:
1. “Do-it-yourself” does NOT mean “do-it-alone!” Find mentors (other parents, caring therapists and teachers) who can share ideas for dealing with challenging issues. Find folks (personal friends, family members, pastor) who can help you keep your sanity and your spirit and your joy. Find one supportive, non-judgmental heart partner to whom you can express frustration and concern and confidential issues. This is a person who can stick with you through thick and thin, but will not let you get stuck in a pit of self-pity. Your buddy need to help you stay balanced and in the real world.
2. Avoid the “all eggs in one basket” approach. Since I started my career in 1973, I’ve seen various approaches to autism come and go, and then come back again. I’ve seen parents who spent most of their money and most of their time focusing on the needs of their youngster with autism. I’ve seen other situations where kids tagged along with disorganized, happy-go-lucky families. I’ve seen a few of my more intense DIY friends become so focused on helping their youngster that they get detached from the real world. In my humble opinion, no ONE approach nor any ONE structure at home and at school works perfectly. Although we should certainly give our kids our best shot, they all seem capable of thriving in “less-than-perfect” circumstances. What they need most is people around them who are loving, humorous, fallible,and real.
3. In my therapy practice, the schools and families and I use sliding scales and scholarships to help every person have access to quality services. Maybe this is only possible because I live in a small community and because I am self-employed. But no person is going to be turned away because of lack of ability to pay. I’ve also learned that small group sessions help build community for individuals with autism AND their parents. And the cost per person is less.
4. Intensity is the key to value. My goal is to make every minute count in therapy. Every therapy session is filled to the brim with learning experiences that develop connections and maximize potential. The individuals with autism and family members leave with new insights and a pocket full of tips and ideas to implement during the next week.
5. Therapists can provide more effective services if they make connections with families and individuals and develop personal relationships outside of the therapy session. I realize this isn’t possible in all situations, but the most valuable “therapy time” can be in passing at the grocery store or while walking in the park or sitting in lawn chairs at an outdoor concert.
6. No such thing as DIY! It seems to me that the REAL professionals are actually the families and individuals with autism. The role of therapists is simply to provide perspective based on their experiences with other individuals and to provide tips and strategies that they have seen work in other settings. No one person – therapist, teacher, family members, nor individual with autism – can DIY. ALL therapy is teamwork.
I am a speech therapist in a public school. I have been working with the same little boy with autism for seven years. I am paid by his school district.The father who wants to sell his kidney must make sure the school district is doing everything they are supposed to do. A lot of parents do not realize this. A good source for this father to check out is Wrightslaw.com. He can e-mail them. They will tell him the things he needs to do.Doing DIY is a fine idea.I think most parents do this anyway 24 hours a day.
I’m an ABA therapist with over 15 year of experience. I think that the parents who are helping their children are DIY-ers and the ones who don’t learn anything from their therapists hinder their children’s learning. Therapists are only there for brief windows of time and if what they are doing is not supported in the child’s home life then chances are slim for progress. Parents must get involved and learn what they can. What we do is not terribly complicated and many parents do it instinctively. Set clear boundaries, follow-through, reinforce good behavior, ignore/punish bad behavior. Don’t say anything you won’t follow-through on “If you don’t put on your shoes you won’t go on vacation”…always a bad tactic:) Therapists are DIY-ers with degrees:)
DIY? I feel like I have to do “it” too, whether it is with or without the guidence of a therapist. As a parent I have to reinforce whatever is taught to my child while instilling my morals and ethics. We only have them close to us for a short time. So the least participation would be WITH a therapist.
I work with Dr. James D. MacDonald in Columbus, OH (I do his web work). He believes strongly that parents are really the best people to work with their children.
Sometimes it’s not just the money but finding someone qualified to do the therapy.
There are also huge waiting lists for some people. Though I would worry about burn out. Maybe family members could also train themselvs so that mom and dad could have a date night once a week.
I am a speech-pathologist who believes strongly in parent education for carryover of skills. I would never recommend a parent just DIY, however. I often see children with mild disabilities for a period of time and then move to a more consultative model, but this is only after intensive work with the child and family. With more involved conditions such as autism, I am often involved in the family’s lives for several years.
Just remember that while what we do often looks like play, there is a rationale and a skill behind eliciting language, physical, and behavioral responses. A therapist is trained in the sequence of how to work on a skill and understands the inner workings of training a skill. I’ve seen many parents DIY and end up with a child with many “splinter skills” as the parent did not understand child language/behavioral development. I’ve also seen parents try to “copy” their Occupational or Physical therapist. This can be very dangerous and lead to muscle tears, joint issues…leave this to the professional. Please don’t copy a speech therapists feeding therapy. You could literally end up killing your child.
Parents, look for a therapist who welcomes you into their sessions. You can learn a lot from “working in” on your child’s therapy from time to time. I caution parents of just sitting in the waiting room during your child’s therapies and walking out at the end of 30 minutes. It takes a team approach and carryover of skills to make progress. My job is to educate you to continue the work at home. Also find a therapist who will take an active role in consulting with your child’s school and training them to work with your child.
In short, don’t DIY. If you are an engineer, I can read all day about your job and have a good working understanding of the field. I may be able to converse with you on the topic, but I still couldn’t go do your job. Rehabilitation fields (speech, behavior, occupational and physical therapies, and psychology) are complex sciences and trying to DIY without proper professional guidance can lead to overall poor skill set development and weak carryover.
Don’t sell a kidney… There are many organizations such as Elks, Shriners, and other private organizations that will help with cost. My practice often discounts rates for needy families.