ASD moms help: I want to pull my son out of his ABA therapy

lolc · October 2011

My son J is 4, will be 5 in January. He has had an autism dx since he turned 3. He has been with Early Steps(FL's early intervention) since he was just over a year. Once he turned 3, he was qualified into FL's public school system. He is able to go for a full day, where he receives OT as well as speech therapy. It seemed to help but did not address most of the behavioral problems we encounter (major issues with transitioning, STILL not potty trained, super restrictive picky eating, etc).

Anyway while at school last year, his pre-school teacher (he is in a blended class) told me about another asd child in her class whose mom found a place that taught her son how to potty train within a week, and I should check into it. So I got in touch with the mom, who talked about this therapist who does ABA therapy. I got in touch with the guy, and my immediate feeling was not a good one. He seemed strange and he is extremely socially awkward (like he'll stare at you waiting for you to say something, allows long awkward pauses in conversations... just really... weird). I chalked it up to the fact that maybe he himself is on the ASD spectrum somewhere, and as long as he has gone through the schooling, received the training, that's fine with me.

This guy was able to put me in touch with the right people at my insurance company to get the therapy covered. The only thing is that it would be $20 copay per VISIT. But this guy said that even though he is supposed to collect it, he doesn't... and that the only time he will need to collect it is if insurance catches on? So being that I want my son to get services that he needs, and his not requiring my copay was a benefit to us, I said OK.

So he runs what they call an academy out of a private school (they basically rent a classroom). He has several workers there, each work one on one with the children. While I know the director has the proper credentials (I don't remember what they are off the top of my head, but I know I looked into it, googled his name and saw that he is legit) - I don't know about his workers? I don't even know their last names, which weirds me out.

Anyway so J has been going, 2x per week (instead of regular public school, which he attends the other 3 days per week) - he goes from 10-2:30. He seems to enjoy it there, but I haven't seen any real benefit other than the fact he seems to enjoy being there. The only thing I ever see him doing is playing the computer. They have them do other activities (like he and the other 2 ASD children in the room took turns playing "baseball" and cheering each other on, etc) but as it stands my son is still not potty trained (and any steps forward we have made have been through us, not through any ABA help), he still doesn't transition well, still throws temper tantrums and throws himself on the floor.

Just today we had his halloween party. This was the first opportunity I have had to spend any amount of time in the ABA classroom with him since my 1 year old was allowed to be there this once. J's (therapist? the girl who works with him regularly) allowed him to get right on the computer and play, and she just basically sat there and watched him. Then when there were directed activities and he threw his tantrum, she would just stand there. At one point I was like "ok how is this addressing the problem?" and she said "well we wait it out, he knows what he has to do..." Whaat??? I will openly admit I am pretty ignorant to what ABA therapy is all about... I am still trying to figure out how to handle my son and I am completely lost with everything.... but just letting him flail around on the ground and not addressing that behavior?? I'm not OK with that.

Then, one of the other therapists there (and I use the term therapist loosely... I know of NO credentials for these people) - I was DISGUSTED by her. She was maybe 25-27, wearing yoga pants and a black shirt (and she had put makeup on her face to look like a "cat") ---- last I checked, cat's butts don't play peek-a-boo. Geezus it was gross. She was wearing NO underwear, had VERY obviously worn a thong while tanning, and her pants kept falling obscenely low every single time she... MOVED, basically. And she didn't pick them up all the time, just half the time. This wasn't something I was trying to see. I was trying as much as possible to avert my eyes because I DON'T want to see that, nor do I want my son to see that! It made me VERY uncomfortable and I couldn't believe she was allowed to be there dressed like that, much less working with the kids like that. And even if the kids don't notice... it was highly - HIGHLY inappropriate. Maybe I'm just a fuddy duddy at the ripe old age of 30, but it was really offensive to me that I had to be exposed to more than just plumbers-butt-crack, but 2/3's of a butt, the majority of the time.

Anyway that whole issue further put me off to this place. Where is the professionalism? Not to mention the party... well, there was no party. I didn't bring my son a lunch because it was said there would be food, drinks, and even candy (everything gfcf) - and there was nothing at all.

I feel like when I bring my son there, it's essentially a daycare with a little more personalized attention. But I don't see the benefit that ABA is supposed to have. I'm not even sure that what they are doing is true ABA.

Anyway, my mom-gut-feeling is telling me to pull him out of this NOW.

Here are my concerns:

1.How else can I get him the therapy he needs? (I know the answer to this one, we have a children's hospital not far from us, I will be contacting them)

2. (the biggest concern): How do I tell this director that I don't think his "academy" is a great place for my son? How do I tell him I'm not sending my son there anymore? I am afraid of talking to this guy because like I said, he is very - very - strange. I may have my husband deal with this because that's how off-putting this guy is to me. Anyway I am afraid a negative interaction might make this guy turn around an insist that we pay all the copays he didn't require us to make (which would amount to hundreds by now, which would be difficult at this time of year!)

Sorry this is so long, and above all, sorry if this is so rambly and doesn't make much sense!!!! I have had to write this in bits and pieces because I have a 1 year old and then my 4 year old is also home because after being inundated with buttcrack and just feeling overwhelmingly like this is a bad place to have my son, I told them that I was bringing him home because I didn't pack a lunch for him and didn't bring him a change of clothes (he came in costume), so we'd just go home for today. "see you wednesday" - except I don't want him going back....

Should I follow my gut? And what should I do regarding letting this place know I don't want him going back?

lindzed · October 2011

I am new to this so I apolgize if I make any mistakes, but the 1 thing I will tell you for sure is go with your gut. If you don't think its right its not.

As far as ABA therapy goes I find major differences in the way each therapist uses it. I personally like a little more of a laid back approach than strict ABA, but it doesn't sound at all like what you are describing is ABA therapy. ABA therpist is usually very structured with a therapist and student working 1-1.

In my opinion you need to take your child out. Call your insurance company and find out what other ABA programs they will cover. Go to the places and ask lots of questions. I went through 4 programs/therapist before I found one I liked.

lolc · November 2011

-auntie-:
lolc:

Hi lolc. I am so sorry you are dealing with this. This is quite a story you are sharing. Short answer is that you should follow your gut, in fact you probably should have followed it a while back. Trust yourself to make the right choices.

It's great that you were proactive and able to get a dx at 3 along with an enviable preschool placement. It's important to understand that sometimes teaching new skills can take some time to emerge and then be mastered. Also certain adaptive skills like dressing, toileting and feeding are usually considered parenting activities rather than educational in nature. Schools will generally support a family around these but the parent must lead the teaching. Are you working with someone privately or from CARD to help around these issues?

I agree entirely that these are activities that families should focus on, not teachers. I have been at my wits end with the potty training and at this point we don't know who to turn to. We have been working - dilligently - on potty training - for 2 years now. Every.single.day. It is one of the absolute most frustrating obstacles to overcome. I do not understand how he can have certain sensory issues to touch (for instance any sort of pasta) yet he has no problem sitting in his excrement. The problem is that he does NOT give any indicators when he is going. None at all. No grunts, pushing, hiding in a corner.... nothing. And his eating habits are so picky and so sporadic that we have no predictability. So as of last year, it had gotten to a point that we were asking any and every one to please help us get him potty trained. I worked ALL summer long trying to get him trained. And he is STILL in pullups. We have even put him in underwear on more than one occasion, only for him to soil them. We have used the PECS system, we have used positive reinforcement, we have used everything we can think of. We have never turned to the school and said "It's all you." We try different methods at home and then ask that they help us with the follow through. And they get the same result that we do. Same with feeding issues. Clothing issues we have finally made some headway and he can dress himself with help.

I should note that about a week ago, I purchased a potty watch and we have been using that. So far he has NOT gone #2 in his pants, which is GREAT. We think we may be ready to finally take off the pullups. *Today* he went to the bathroom before the potty watch song came on because he had to go. I cannot begin to tell you how proud I am! And I hope we see consistency with this (because efforts have been promising in the past but for no known reason he regressed).

Anyway while at school last year, his pre-school teacher (he is in a blended class) told me about another asd child in her class whose mom found a place that taught her son how to potty train within a week, and I should check into it.

BTW, this is a huge red flag that your son's teacher didn't feel it was her job to toilet train your son.

So I got in touch with the mom, who talked about this therapist who does ABA therapy. I got in touch with the guy, and my immediate feeling was not a good one. He seemed strange and he is extremely socially awkward (like he'll stare at you waiting for you to say something, allows long awkward pauses in conversations... just really... weird). I chalked it up to the fact that maybe he himself is on the ASD spectrum somewhere, and as long as he has gone through the schooling, received the training, that's fine with me.

Did you confirm any of this? I've read the C.V. for all of DS's doctors and therapists. It's critical that we make sure we are spending their time and our resources wisely. Word of mouth can be a great was to gather potential names, especially when multiple families rave about a single individual. But the onus is still on your to check credentials. There was a situation a few years ago where one of the foremost experts on special education and learning differences came under fire for sexually absuing boys in his care. You can't be too careful.

I was able to confirm that he does hold the appropriate degrees and has the certifications needed.

This guy was able to put me in touch with the right people at my insurance company to get the therapy covered. The only thing is that it would be $20 copay per VISIT. But this guy said that even though he is supposed to collect it, he doesn't... and that the only time he will need to collect it is if insurance catches on? So being that I want my son to get services that he needs, and his not requiring my copay was a benefit to us, I said OK.

This is dodgey sounding. Not sure if it qualifies as insurance fraud, per se, but it's pretty irregular.

So he runs what they call an academy out of a private school (they basically rent a classroom). He has several workers there, each work one on one with the children. While I know the director has the proper credentials (I don't remember what they are off the top of my head, but I know I looked into it, googled his name and saw that he is legit) - I don't know about his workers? I don't even know their last names, which weirds me out.

Yeah. This would weird me out too. Especially for a challenging young kid who doesn't have verbal skills for reporting.Exactly

Anyway so J has been going, 2x per week (instead of regular public school, which he attends the other 3 days per week) - he goes from 10-2:30. He seems to enjoy it there, but I haven't seen any real benefit other than the fact he seems to enjoy being there. The only thing I ever see him doing is playing the computer. They have them do other activities (like he and the other 2 ASD children in the room took turns playing "baseball" and cheering each other on, etc) but as it stands my son is still not potty trained (and any steps forward we have made have been through us, not through any ABA help), he still doesn't transition well, still throws temper tantrums and throws himself on the floor.

I could probably come up with a plausible scenario where they could claim that using the computer as a carrot to engage autistic kids into a game in which they could practice sportsmanship skills. Don't love it as much as getting them interacting without the distraction of a scene but I'm old school. Some people love them some technology; see all the posts about moms and ipad apps.

It could be your son isn't going to learn to transition appropriately any time soon. This can be really hard for some kids on spectrum, even really bright kids get stuck and act out their frustration. What sort of things are you doing at home around flexible thinking? Do you have a priavte behaviorist? We do not have a private behaviorist currently.

Just today we had his halloween party. This was the first opportunity I have had to spend any amount of time in the ABA classroom with him since my 1 year old was allowed to be there this once. J's (therapist? the girl who works with him regularly) allowed him to get right on the computer and play, and she just basically sat there and watched him.

Was this a reward for behavior from earlier in the day? Was it a special treat? No, it was what he did immediately upon getting into the classroom, and she followed him over to the computer.

Then when there were directed activities and he threw his tantrum, she would just stand there.

That can be a legitimate way to extinguish this behavior if the antecendent is attention getting. My guess is that if he self settles in under 20 minutes, it's a real possibility and actually bodes well for him eventually gaining more self control. My husband thinks the same thing, said the same thing you did when we talked about it this evening. When I wrote this earlier he was sleeping because he works midnights.

At one point I was like "ok how is this addressing the problem?" and she said "well we wait it out, he knows what he has to do..." Whaat???

It sounds as if he's been trained to work through the options and come to the conclusion of making the better choice. Assuming he has the intelligence and the emotional maturity to work through it, this is promising.

He definitely has the intelligence. He has been able to read for two years. I never taught him how to read. At first we discovered it was just hyperlexia - he could read and sound out the words, but we weren't sure that he understood their meaning. Now at 4, we can see that he understands, or at least APPEARS to understand what he is actually reading. So that's great. He is probably lacking the emotional maturity.

I will openly admit I am pretty ignorant to what ABA therapy is all about... I am still trying to figure out how to handle my son and I am completely lost with everything.... but just letting him flail around on the ground and not addressing that behavior?? I'm not OK with that.

Best to get the education. Understand ABA so you know what you've signed him up for. It could be that ignoring the behavior is acting as an aversive to extinguish the behavior. If her earns nothing for his meltdown, it's a successful strategy toward teaching him that tantrums aren't effective which will reduce and finally make them go away.

But you really need to understand the options so you can be a fully competent advocate for him. I know this is hard stuff, but ultimately you are responsible for getting the best program in place that you can. The buck stops with you.

For the day to day parenting of an ASD kiddo, nothing beats the support of a behaviorist familiar with ASD kids because so much of it is counterintuitive. Can you get a referal from CARD. Worth it even if you pay out of pocket.

Then, one of the other therapists there (and I use the term therapist loosely... I know of NO credentials for these people)

Because you haven't asked.

- I was DISGUSTED by her. She was maybe 25-27, wearing yoga pants and a black shirt (and she had put makeup on her face to look like a "cat") ---- last I checked, cat's butts don't play peek-a-boo.

It was Halloween. Can't say her butt being out was a good thing, or especially professional, but it's not a hill upon which I would choose to die. You're grasping at straws. Focus on the credentials of these people, whether they are delivering a quality ABA program and whether ABA is the best therapy tx for your son right now. That's what matters.

I do get the impulse to insult. The director of special education services at DS's school looks like a month old corpse wearing tangerine lipstick. My loathing for this woman is based on her crappy attitude though I do enjoy being 10 times better looking than she'll ever be even on my worst hair day.

Geezus it was gross. She was wearing NO underwear, had VERY obviously worn a thong while tanning, and her pants kept falling obscenely low every single time she... MOVED, basically. And she didn't pick them up all the time, just half the time. This wasn't something I was trying to see. I was trying as much as possible to avert my eyes because I DON'T want to see that, nor do I want my son to see that! It made me VERY uncomfortable and I couldn't believe she was allowed to be there dressed like that, much less working with the kids like that. And even if the kids don't notice... it was highly - HIGHLY inappropriate. Maybe I'm just a fuddy duddy at the ripe old age of 30, but it was really offensive to me that I had to be exposed to more than just plumbers-butt-crack, but 2/3's of a butt, the majority of the time.

It's more upsetting to me that you know everything about this woman's underwear or lack thereof and nothing about whether she's BCBA or what. You are right. As a parent I dropped the ball. I should know what their credentials are. Ew, I hope my post didn't come off like I was some kind of perv? (I felt kind of pervy with this sentence!) Seeing that woman's crack was the LAST thing I wanted to see!!

Anyway that whole issue further put me off to this place. Where is the professionalism? Not to mention the party... well, there was no party. I didn't bring my son a lunch because it was said there would be food, drinks, and even candy (everything gfcf) - and there was nothing at all.

The GFCF would be a red flag. While the ABA schools near me would respect a parent's right to choose an alternative biomed therapy, and would keep the child out of forbidden foods, none would restrict other children's diets.

I feel like when I bring my son there, it's essentially a daycare with a little more personalized attention. But I don't see the benefit that ABA is supposed to have. I'm not even sure that what they are doing is true ABA.

If you have a private therapist or behaviorist, they can observe your son in the program and make the call whether they recommend keeping him there. We did this when DS was little and it was some of the best money we ever spent.

Anyway, my mom-gut-feeling is telling me to pull him out of this NOW.

Here are my concerns:

1.How else can I get him the therapy he needs? (I know the answer to this one, we have a children's hospital not far from us, I will be contacting them)

Contact CARD at https://card-usf.fmhi.usf.edu/ Thank you, will do.

2. (the biggest concern): How do I tell this director that I don't think his "academy" is a great place for my son? How do I tell him I'm not sending my son there anymore? I am afraid of talking to this guy because like I said, he is very - very - strange. I may have my husband deal with this because that's how off-putting this guy is to me. Anyway I am afraid a negative interaction might make this guy turn around an insist that we pay all the copays he didn't require us to make (which would amount to hundreds by now, which would be difficult at this time of year!)

Just write him a letter saying you are withdrawing your son. If he holds you to the co-pays, you'll have to pay them. You might call your state's insurance commisioner to see if his behavior constitutes fraud.

Sorry this is so long, and above all, sorry if this is so rambly and doesn't make much sense!!!! I have had to write this in bits and pieces because I have a 1 year old and then my 4 year old is also home because after being inundated with buttcrack and just feeling overwhelmingly like this is a bad place to have my son, I told them that I was bringing him home because I didn't pack a lunch for him and didn't bring him a change of clothes (he came in costume), so we'd just go home for today. "see you wednesday" - except I don't want him going back....

Should I follow my gut? And what should I do regarding letting this place know I don't want him going back?

rainydayluck · November 2011

Sorry to intrude, I was just lurking, but did you check to make sure the staff running things were BCBA or at least supervised by one? Does Florida have licensing yet? I am a BCBA in MO and whenever I come across people practicing without credentials or practicing unethically I report them to the BACB and licensing board. It really sucks that there are good and bad BCBAs out there and if it doesn't seem right, pull him out asap. CARD is a great organization. Toilet training is usually a pretty high priority for behavior analysts. Sorry you are dealing with poor service.

ASD moms help: I want to pull my son out of his ABA therapy

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