ABA help needed

Vanessa Doofenshmirtz · September 2012

I've shared with you before our misgivings about our ABA implementer. We have stuck with her, mostly because she's so damn sincere and sweet and she's trying. But she's just not very good and often has to call the BCBA during sessions for advice. When sessions go badly long tantrums and such it is incredibly stressful and draining. I'm instructed to ignore DS, but it's impossible to get anything done at home when he's screaming and I can't leave, per policy. Sometimes it just feels like I have a very overpriced "mother's helper" who isn't very helpful. ;

Therapy nights are almost always bad even after she leaves. Dinner, bath and bedtime are usually more stressful.

Our implementer has given notice for January. Our BCBA was going to wait until November to screen replacements, but the agency decided to send a new one along to shadow ours yesterday. He, too, is brand new. Like our currentzero reallife experience with ABA implementation before walking through our door. And, zero professional experience with kids, period. He comes fresh off a direct care situation for three grown men.

I didn't like him. He seems young, inexperienced, and going through the motions. He said he was doing this to earn some of his 1500 hours toward BCBA degree.

Does anyone here get an actual BCBA as the primary contact with the child? Ours only observes once every 3 or so weeks. She says it's due to insurance.

We feel our agency is just finding the cheapest employees they can. Everyone is training on the job and it doesn't seem worth it. And I question the goals. They asked for our input but then work on things like making patterns with MMs, which doesn't seem to address any of the needs I prioritized.

However, this is the only therapy covered by our insurance and if we quit, all we have are school IEP services 3 hrs/week total.

If we take a break, I will feel like I'm not doing what we should.

Please share any thoughts you have about this situation or your own ABA experiences. DS is 4, with autism.

Thanks!

Eta: my gut is telling me to drop it for now, and enjoy more playtime with the boys in the afternoon. I'm also pregnant, and dealing with the drama of our ABA sessions is incredibly draining.

We have seen very little carryover for the goals he's met in session. He may learn to take turns with the implementer, but it's hard to determine what greater impact it's had in real life situations.

lindzed · September 2012

Sorry that is a tough one. I had a speech therapist that was the same issue. So nice and she tried very hard, but every session was a disaster. I finally changed and it was do much better. My biggest piece of advice is to follow your instincts. I spent the last 6 months trying to do this and we have all been so much happier.

Sorry to answer your question, I do have a bcba for my aba provider. No way would I let someone with no experience work with my child if they were not being directly supervises by someone with lots of experience. I would call the company and insist you interview the provider and approve them. I bet you will be surprised what the company will do for you when they realize you may stop the service. Also, call your insurance company yourself to figure out coverage you may have better coverage than they are telling you. My new big insurance trick is to ask for everything to be sent to me in writing. So far about 1/2 of the time the coverage has been better than they told me on the phone.

If all else fails I would quit aba. Honestly to me no therapy is better than bad therapy. The more I push my son into bad situations where frustration is too high and he has to act out to try to express that he is very unhappy then the more he begins to retreat into his own world. At that point doing anything productive is impossible.

Vanessa Doofenshmirtz · September 2012

Lindzed,

That's a great idea about checking with the insurance company. I think our BCBA said that insurance only pays for her to come every 10th session, which seems so strange. She literally had not met our current implementer before the first session, and everyone seems to be flying by the seat of their pants.

Thanks!

st.augbride · September 2012

Well, up until Monday we've been working only with the BCBA. She is absolutely phenomenal. However on Monday our insurance decided to pull the rug out from under us and will no longer cover ABA for ds b/c he does not have an ASD diagnosis (even though his developmental ped says he needs ABA and benefits GREATLY from it). We just can't afford the BCBA without this, so she will now supervise a different therapist who she says is good, and I hope she is, but I know I have high expectations now given how great the BCBA is. She was specifically recommended to me by our developmental ped who is quite familiar with the providers in the area. Because I have a good relationship with our BCBA and she says this therapist is good, I am hoping it works out. But if it even starts to feel like it isn't going well, then we will figure out other options. I don't think I'd entertain using someone without any experience at all...especially given the experience you just had. I would probably hold a meeting with your BCBA and explain your concerns. Perhaps ask them to lead one of the sessions and watch and see if it goes differently. If so, at least you know it's the provider and not just the process.

Vanessa Doofenshmirtz · September 2012

St. Augbride,

How frustrating! I'm sorry they did that. Our supervising BCBA has been involved in a lot of sessions over the past year and it's often and night and day difference. She is so great with him.

It's hard for me to talk frankly with her about concerns over the implementer. Both women have such compassionate hearts and it's uncomfortable to be as honest as I should be, and say that fundamentally we just need someone with better experience. And that's on me, I'm not serving my son well by being a big chicken.

When I've addressed it somewhat, saying "things aren't going well" etc., she seems to take it seriously and advise implementer and maybe things are better for awhile. But the bottom line is that when DS acts in unexpected ways (which he does all the time) BCBA knows how to go with it, and implementer gets frazzled. Much like me. I can't fault her too much, half the time I sit around scratching my head and wondering "do I ignore this? Time out? Redirect?" But then I'm not paying myself a $50 copay for all this head-scratching.

st.augbride · September 2012

-auntie-:

I've never done ABA with DS, but I know a few BCBAs. They're very expensive people and most would say a child needs a minimum of 20 hours a week, ideally 40.

Globalizing skills is a huge issue for kids on spectrum whatever therapy modalities are used- they are black and white thinkers who lack the abstract reasoning to master a skill easily and effectively apply it in a well practiced situation much less one that isn't exactly as scripted. Floortime is a little better at teaching thinking rather than behavior, but even there globalizing skills is a huge challenge.

The people I know who are successful with any of these approaches do them as a family lifestyle. We live CBT in my house 24/7. Yeah, DS has a private psychologist for 50 minutes a month- the rest of the responsibility for his therapy is on him and us.

I will say that this varies by child. We met with several recommended ABA providers before selecting one and while our developmental ped mentioned the 20 hours per week mark (for all therapy combined, not just ABA), the ABA providers said that this varies substantially by kid and ultimately they aim for the minimum number of hours needed to see the changes and progress we're targeting. For ds, that really seemed to be about 2-3 hours per week. Now though, with the costs being dumped on us by our insurance, this will have to go to 1 hour per week, but as you mentioned, dh and I continue working on this skills during the week, which we also count as therapy.

KelliO924 · September 2012

I agree that a good therapist makes a world of difference. We've always had a therapist/implementor (or two alternating to help globalize) and then a BCBA that would come supervise once a month or when programs needed to be written. At one point, we did have a brand new therapist, I was leary, but she ended up being a good fit. In all honesty, I would give the guy a chance, if he's getting his BCBA hours, then he at least knows the fundamentals of ABA (versus a new employee that knows nothing about it and just needs a job). Don't be afraid to ask for a new therapist if it just isn't a good fit, they should be willing to do that.

All that being said, we've cut back on our ABA now that school has started. At this point, my son's biggest deficits are social rather than behavioral and I just feel like he also needed some time to be a little kid. We kind of structure our lifestyle around ABA principles, so I feel like it was all becoming overkill and we were experiencing a bit of burnout. If I see issues cropping up, I have no problem adding additional hours back in, but for now, I think he (and we) also just need some normalcy in a world where everything we do isn't about autism. Do what's best for you and your family, you can always add more later if you just need some time to regroup. Best of luck!

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