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Ten things you can do as a parent to improve your child's behavioral program


Disclaimer: This is not a comprehensive list of everything you can do. This is a list of helpful hints that I've put together based on my own experience with my autistic child having ABA/behavioral programs for the past 5 years. It also incorporates input from other parents and Behavior Therapists and Case Managers that I've met and/or worked with over this journey. As you well know, autism is a spectrum disorder, and the variation of deficits and needs is different and veritably unique for each child, so the most important things for your child will vary. These are simply things to consider.

I really wanted to make sure I got this up before the end of Autism Awareness Month. So here it is. I hope it helps. Please feel free to add your own ideas and suggestions in the comments.

Full post under the cut:


1. Observe (Watch and Learn): This goes first because it is the foundation block for everything else that I will talk about. I know the temptation (and even the dire need) to use the time the therapist is working with your child on other life needs – concentrating on your other children, getting housework done, or simply having some rest and alone time. But you need to make a little time to watch the sessions- not the whole session, just some of it, even if it's a spot check of 5-15 minutes here and there. I used to try and stand a little bit away and out of my child's line of sight. Get to know what types of programs the therapists are working on. Get to know how they engage and speak with your child. Get to know what your child responds to, withdraws from, or gets upset and frustrated about. Overall observe what his programming looks and feels like, and get to know how your child is doing. What are his strengths and his greatest deficits? Where does he excel? When does he get frustrated and have a meltdown? What does he seem to enjoy? What does he hate?

2. Know the team: Get to know the team and hierarchy of who is working with your child. Know their names, education, training, and experience backgrounds. Who reports to whom and what each individual's responsibilities are. In the case of supervisors/case managers, get to know how many years they had as therapists and how much training and experience they have in supervisor/managerial roles. This is another foundation piece, and other suggestions below will be dependent on your understanding of the personnel and their roles. It is also important that you understand:
- Who is responsible for training the therapists and ensuring that they are doing the programs appropriately (how often will the therapists be observed by this person)?
- How often does the team meet to discuss the overall state of programming (and if at all possible try and be involved in these team meetings)?
- Who is responsible for setting and updating the programs, procuring materials, and communicating with the therapists and parents? What is their philosophy on therapy in general, and specifically for your child? (e.g. How much Discrete Trial/Table time vs. on the floor/play time, philosophy on rewards/motivational methods, philosophy on dealing with negative behaviors, etc.) Ask lots of questions. Make a list of your questions for this person.
- Also make a convenient list of everyone and their contact numbers for quick reference.

3. Follow the data trail: DATA!!! Applied Behavioral Analysis is dependent on the collection and analysis of data. Here are some common pitfalls you can help smooth. And again, this is another foundation.
- Look at the data sheets and see what kind of data is being collected as well as observe the therapists (remember#1?) as they collect the data. Is it obtrusive? Working with your team to collect the right amount (not too much / not too little/ the right kind) and easy to transcribe during the sessions is very critical to optimizing the therapist.
- Who is analyzing the data (remember#2?)? This often a huge pitfall – the data black hole. Therapists collect reams of data and no one is analyzing it or analyzing it in a timely fashion. Make sure the data is being looked at, charted, evaluated, etc. So important! This will help with program selection, moving mastered programs to maintenance, knowing how fast to introduce new programs, etc.
- Note: the type and amount of data is dependent on the type of therapy. DTT will have a lot of data. Play based therapies and RDI type therapies will have less, but it is still important that daily data on your child's overall behavior, compliance, and other observations be noted and tracked.

4. Communicate: Now that you know about the therapy program, the therapists/supervisors, and the data, it's good to communicate with them as well as review the giant binder (or master file) that they have sitting in your house (if your therapy takes place at home) to see what programs your child is working on and ask questions about it. Foster open communication, even a few minutes here and there, between you and therapists and supervisor. Create a team atmosphere and you are part of the team.

5. Integrate the therapy into your child raising strategy: Try and integrate everything you've been learning (also from speech, OT, or other therapists as well) into your daily life. This is huge. So many of the techniques can be used for how you talk to your child and how you interact and play. Use these same techniques at meal times, bath time, getting ready for bed, going on an outing, etc. Things like PECS and schedules can work wonderfully in daily routines. We put up a PEC strip and social stories in the bathroom. We used a small wipe board to write up simple schedule for a Saturday morning: 1. Breakfast, 2. Get Dressed, 3. Park, 4. Grocery Store. And any time you have a few minutes try out the DTT programs and use flash cards. Find interesting games and toys that would make good teaching materials that are reinforcing the subjects that the therapists are working on. (ex: the therapists are working on animal names & sounds, get a zoo or farm play set and work on reinforcing that topic). You can also find tons of great shape used toys on Ebay and Craigslist.

Without a doubt we changed how we "parented" and used a lot of these same techniques with success on our typical child.

Suggestions 1-5 were more overall/general that can be applied to the whole therapy scheme for your child. Suggestions 6-10 are more specific ideas to think about.

6. Typical Peers: When someone asks me what do I think is the most important thing to do with your ASD child, I usually answer, "Get them some typical peers." They need these models and experiences to have friends and relationships of their own age. Cultivate these peers and get them into your child's therapy sessions. Typical peers are of course great for Integrated Play Groups (IPG), but they can also be very successfully implemented as part of DTT, floor time, RDI, role playing and social stories, and other behavioral therapies. And certainly any additional playdates that you can arrange for your child (at home, in the park, even just sitting side by side and watching a movie together) are great, the more the better!

7. Pacing of Programming & Programming Setting: This I found was another huge pitfall. You want the pace of the programming to be as fast as your child can possibly go. Mastered programs should be moved to maintenance and new programs introduced. I touched a bit on this above, but this deserves it's own number. In particular, if you have a high functioning child who responded incredibly well to ABA and is picking up things fast, you need to keep on those supervisors/managers to keep moving and updating his programming content. Some children will master a task just after a few sessions. Also if your child is moving very quickly through DTT, move those programs into naturalistic/play-based settings and out of the table time. Keeping the programming fresh will keep your child progressing and enjoying his therapy sessions. Moving programs/skills into a naturalistic setting will help your child to generalize.

8. Consultant: Most people who work in this field are constantly doing training sessions, reading, and going to seminars. This field is constantly changing and growing and people are learning. This should be met as a learning opportunity for your current team (I would be very skeptical of a team that was not open to this idea). Bring in another Case Manager/Expert from another company to come and observe your current child's programs, therapy, review the binder, etc. Then have a team meeting with their observations and suggestions. This should be a meeting of the minds not an "evaluation." Make it a positive and proactive experience – not a 'see if your current group isn't any good' experience. Don't focus on "wrong" but ideas about different methods, data collection, and evaluation of performance. Also what types of programs could be introduced to your child's therapy, and what perhaps doesn't seem to be working and what are alternate ideas for that. Six to eight hours of consulting time could translate into hundreds of improved hours for your child.

9. Idea Generation: A good idea can come from anywhere: friends & family, the World Wide Web, autism boards & groups, teachers, books, etc. I know that time often seems fleeting, but any and all time you can spend doing a bit of reading and research will help. Then pass those ideas to your team. Brainstorm about them. Often programs to help some of your child's greatest deficits are created with bits and pieces of ideas and therapies culled from various locations. Behavioral therapy is not a concrete list of programs. It is fluid, changing, and often custom made.

10. Support Network: This one is for you! The better your physical and emotional state, the better you will be for your child. Reach out to friends and family and help them to get involved with your child. Cultivate other people who know and know how to care for your ASD child, both friends and babysitters. Parents with kids also on the spectrum can be a great support, but so can parents with typical kids. Give them a chance to come into your life and get to know your child. I have been utterly blown away by the caring and effort put forth by many of my child's typical peer's parents.

Comments

( 10 comments — Leave a comment )
balamuthia
Apr. 29th, 2009 12:44 am (UTC)

All of these things are helpful, important, and things I know logically I should be working on more- I just don't physically have any more to give.

Number ten has honestly been the most difficult for my family. We have close friends, but most of them aren't equipped to keep up with the active attention it positively requires to keep Juniper engaged.

I have been pretty lax about actively seeking out support groups in my area and that's a bad on me but I have my own problems with socialization and forging lasting contacts. There's just so much to traverse that sometimes we get lost in it.

autismblog
Apr. 29th, 2009 02:22 am (UTC)
Being a parent is exhausting. Being the parent of a special needs child is a whole other dimension of exhaustion. When there's a daunting or overwhelming task or situation at hand, whatever it may be, I try to pick one small thing that I can change, do, accomplish. Start small, chip away. Maybe find that one thing that won't sink you, but you can accomplish, and maybe it will help.
west66
Apr. 29th, 2009 02:26 pm (UTC)
Thanks for sharing these. My son has been doing ABA for almost 7 months. I observe and communicate wit the therapist but I don't do the data. I am very lucky we have a super autism support group locally.
autismblog
Apr. 29th, 2009 03:01 pm (UTC)
I'm glad that some folks will get maybe get a little something out of it. Food for thought.

The data black hole is often a big problem in kid's programs. It is truly a fine line between collecting the right data and right amount vs. collecting too much and it taking too much of your therapists time. A good question is to ask your therapists if they've worked for other companies and how do they feel the data they are collecting now matches up (takes too much time, not as much data, thinks it's great, thinks they're not collecting something imporant). And ask your supervisor/manager what they do with it and how often. Good luck :)
nicolemedina
May. 6th, 2009 03:32 pm (UTC)
Great advice!
This was amazing advice! I am an ABA therapist and although a lot of it will keep me on my toes, I sent this as a link to a client and recommended it to many people. The more parents are involved in the therapy process, the better kids will do overall. Thank you so much for posting this!

Parents, keep heart! If you have a good therapist he or she should be willing to go the distance for and with you! That means that when you are tired and don't want to do the research etc. they should be helping you and supporting you with tips and tricks or even just an ear to listen to you! That's what they are paid for and they should and do love you and your kids! That means showing you how data works, how to integrate ABA principles into your lives, etc. If you aren't getting that, something is wrong.

autismblog
May. 7th, 2009 05:34 am (UTC)
Re: Great advice!
Thanks so much for the feedback. When I first created my website I tried to put up as much info as I thought would help someone with a child/newly diagnosed, but I've been a bit lax on the meta and really wanted to try and put some new info up.

And yes, I have found some amazing friends in his therapists (and so has he), friends who stayed close even after they stopped working directly with my son. They have been both a great source of information and friendship.
vonblueguy
May. 11th, 2009 12:50 am (UTC)
This post is relatively useful and very timely. Thanks for sharing them. Gawad Kalinga
(Anonymous)
Jan. 7th, 2010 01:15 am (UTC)
schKIDules
If you dont want to make your own, schkidules.com sells some pretty good visual schedules and what I like is they will make digital phot magnets for you.
(Anonymous)
Jan. 13th, 2011 09:51 am (UTC)
I recently stumbled upon this page, I'm just totally excited I've at last came across it
Decent blog post! Will you follow up on this subject?
autismblog
Jan. 18th, 2011 01:37 am (UTC)
thanks for stopping by :)
I try to post something ~1 month. Ethan's 9 now and has transitioned from more traditional ABA to social groups and school based intervention. I hope you peruse what I've written and can get something out of it.
( 10 comments — Leave a comment )