2nd round of ABA

[happycc]

with another a new program and it has been horrible.

 

For some reason, ABA does not work for our family. 

 

They want my involvement too much. I have too many kids. They want us to send the kids to school etc.

 

They want this and that--a lock here, a lock there, change this, change that. Buy a new table, rearrange the house, video tape, read a chapter, take a test etc

 

We rent here as it is and can't make major changes to the house. 
 

We were with Behavioral Support Partnership and now with East Bay Easter Seals. I think all the people running these places all are on the spectrum because they are all so rigid themselves. 

 

I am just so frustrated. It is hard enough as it is with two kids in the house on the spectrum. 

[Crimson Wife]

Easter Seals has a ton of subcontracted agencies. Technically we are getting ABA through Easter Seals but I've only ever dealt with the subcontracted agency. They haven't told us to make any major changes, though I did realize that we were unintentionally reinforcing certain negative behaviors and we obviously changed that. My little one is in PS but they know that we HS the two older kids and it didn't seem to faze them any.

 

Parents Helping Parents in San Jose has a support group for HSers with spectrum kids. If you aren't already involved with that group (it's just too far a drive for us so we're not), I'd recommend checking it out. Someone there might have a suggestion of an Easter Seals subcontracted agency more used to dealing with HSers.

[happycc]

Hi Crimson:

 

I am not understanding the term subcontracted agencies. We got our services paid for except for copays from Kaiser.  All I know was that I had to go to the Oakland Easter Seals office for both boys to get them started. They had me start with one guy and took him off and replaced him with another woman midway who has been an absolute nightmare. She really didn;t do much and not very effective and when she did do something it was to write a nasty email to me telling us of all our short comings. We had two head honchos and a bunch of BIs under them. I wish the guy was back with us. He seemed normal and reasonable and realistic as he has kids of his own. All these other people don;t have kids and have not a clue what family life is like. I have learned that the ones without family are the worst whiners in the world and complain about everything. They have these idealistic glasses on their heads of how things should be.  

 

San Jose is another good 45 min to hour drive for us so there is no way we will do that especially in traffic which seems to be all the time as of late.  

 

Yes they were pushing PS on my spec ed son but after seeing what PS did to my older teens I am wary of PS right now. Looks like we are on our own and mustering our way through the darkness again. 

[kbutton]

with another a new program and it has been horrible.

 

For some reason, ABA does not work for our family. 

 

They want my involvement too much. I have too many kids. They want us to send the kids to school etc.

 

They want this and that--a lock here, a lock there, change this, change that. Buy a new table, rearrange the house, video tape, read a chapter, take a test etc

 

We rent here as it is and can't make major changes to the house. 

 

We were with Behavioral Support Partnership and now with East Bay Easter Seals. I think all the people running these places all are on the spectrum because they are all so rigid themselves. 

 

I am just so frustrated. It is hard enough as it is with two kids in the house on the spectrum. 

 

I opening this thread to see if I could glean any information about ABA because we haven't used it, and it has sounded promising in some ways. 

 

I am commenting just to say that I'm sorry this is how things have worked out for you in this case. I have dealt with rigid people who have only one answer for me and criticize me roundly when it doesn't work. Just wanted to chime in and say that I understand, and I have often thought people in positions of authority are sometimes far more rigid than my kiddo on the spectrum (and sometimes they are complaining about his rigidness while being very rigid indeed!).

[Guest sunniechild]

Sorry to hear its so overwhelming.  I can totally relate.  My kids all have special needs and ABA hasn't quite worked for us either.  I do what I can and sometimes its more and sometimes its less.  I have a sister that I vent to and I have had to go to therapy for me just to get my own head straight and deal with the overwhelm.  I came to the point where I listened to everything I was being 'advised' to do and picked what I could do and what I could afford and did it.  Its best to be consistent with one or two things than have a list of 20 things that just aren't going to happen and beat yourself up over it.   I have to reevaluate and do this about every 3 months because things change.  Hope that helps.  Hang in there, your not alone. 

[happycc]

So here is what I know about the two different ABA I have been with:

 They have the main boss in charge of the whole organization. 

 

Then each family gets assigned two honchos. 

Not exactly sure of what each does. One definitely does the scheduling. But they come in and observe an hour or so once a week or so.

 

Now they have these BIs come in during the week to work with your child a few hours a week or so. A different Behavior interventionist a day, sometimes two different ones a day. So think sometimes 4-6 people for you and your kids to get to know a week plus the two honchos that come in and out throughout that time. 

 

They want to talk to you in the beginning of the session and then at the end and ask you to participate in the middle of the session. These sessions are 2.5 to 5 hours a day.

 

They leave messes everywhere.  They come in and play with the toys and child and then we go back in the room and the toys are everywhere. 

 

They have my son eating and leave the plates/bowls on the table. The expectation is to put the plate/bowl in the sink when done and not attract flies. 

 

They want my kids all have separate shoes just to go in the backyard. 

 

They want different locks on the gates to the backyard. 

 

They get upset when my son is still sleeping when they come in however recently we have had some changes in husband work and he is not home til midnight. 

 

They want my participation constantly and I just can;t do it when I am busy with the other kids. 

 

They say they cannot include another sibling in the play when another does. All the Bi's have different ways of dealing with things. 

 

They want you to have a definite schedule everyday down to the 5 minutes.

 

No baths allowed. Well I cannot help when the kids get dirty when they are under their care. When my younger baby poops, in order for the smell to completely go away even with diaper wipes, he needs a bath. Then the older son sometimes wants to jump in too. 

 

My older son doesn't wipe his behind so we have to come in and do it for him. They are supposed to work on him not needing our help anymore. So they are upset that he aren't there ready to wipe him and he has to call for us. SERIOUSLY. If he were my only child, then I suppose I can be there ready constantly but I don;t. 

 

Instead I am busy dealing with paperwork, paying bills, organizing the house, cleaning house, making meals, researching curriculum, planning the schedule, reminding kids what they need to do, teaching, talking on the phone and discussing finances with husband or dealing with the bank, talking to doctors, therapists etc. I am definitely not sitting on my behind and sleeping all day. On top of it I am also running a nonprofit organization to teach kids and their adults STEM skills. 

[kbutton]

It doesn't sound like they are prioritizing anything, and they are expecting you to accommodate a lot. It's always amazing how "easy" the solution is to someone else, but if it were easy, you'd have done it by now.   :grouphug: 

 

A schedule down to the five minutes...wow, just wow. So not my cup of tea. 

 

 

[Guest]

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[happycc]

So what resources did you use to do ABA by yourself?

[Guest]

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[Lecka]

I have a different take because I am happy with my home ABA, overall.  

 

I am also frustrated sometimes (often, but only for the 5-10 minutes it takes me) to be picking up after them.  They are supposed to pick up after themselves, and they do pick up some and have my son pick up some. But they never seem to get everything, and it can be really irritating.

 

It used to be a LOT worse.  Then I realized I would just have to take some time and space to simplify things.  This means -- I cleared out closet space in that room's closet, my hall closet, and one shelf in my cleaning supplies cabinet by the hall closet.  Here I am fortunate that I do have some storage.  But I don't have a lot of storage, and I had to clear out things I would not have cleared out if not for ABA, and it is irritating.  But I made space for some clear plastic boxes.  Then I sorted some of the frequently-used things into the boxes.  Then I cleared some incidentals out of that room and moved them into my other son's room.  So now -- my kids can still have the toys in my other son's room, but those toys are not getting messed up during ABA just at random.  

 

So now it is easier for them to pick up, and it is easier for them to see that stuff is out (though they still miss things), and they are more likely (much more likely) to naturally take down one plastic box at a time, and put it up before getting down another.  At most they have 2 boxes out at a time.  I do think it is easier for everyone.  I have to remind myself, also, that maybe they don't know just how everything is supposed to be the way I do.  

 

Another sometimes irritation is when little pieces of food are under his work table, b/c he has been a messy eater.  Now my little daughter actually enjoys and is great with my little hand-held vacuum cleaner.  I ask her nicely and she is happy to vacuum up under there.  It is a 2-minute job, it is just irritates me to have to go in the garage, un-plug it, take it back to the garage, plug it back in, several days a week, when I think it is ridiculous, in a way.  But my daughter does not mind, and she is happy to be my helper, and I tell her how much I appreciate it.  

 

Then here is my second take.  It it not nice.  I don't think personally against you, just the situation.  It does not sound like home ABA is a good fit.  I think it sounds like a time, you might ask if your funding could be used at a center, if you would like a center.  

 

Here is what I am picturing.  Your original guy, the one you liked more, is at a meeting with his supervisor or case manager or whatever.  Here is what he says.  "The parents do not want to do any parent training.  The parents are not willing to take any suggestions I make.  The parents act irritated with me all the time."  Then the supervisor/case manager says "well try this and this."  He tries it and still the parents seem like they are "not a good fit for him."  He is frustrated and feels like he is not able to do his job the way he wants to.  Maybe (not definitely, I just think it is in the realm of possibility) he asks if he could transfer to another case when another case becomes open.  Maybe the supervisor makes that decision b/c that is what he/she thinks is best.  

 

Then you get the new person.  Either, a) the supervisor didn't assign you someone so good this time around, maybe the supervisor sends the better people places where they are more appreciated.  Or, B), you have got the person that your case manager sends when the parent is seen as more difficult to work with (maybe not personally, just the whole situation) because this person has a thicker skin or just doesn't care.  In this scenario -- this person has shown up on day 1 having been told by the supervisor that "the prior therapist found this family difficult to work with."  In that case -- you are not getting a fair shake from day 1.  But when the supervisor asks -- this person is also going to say "well the parent is not willing to do parent training or listen to my suggestions."  

 

B/c -- that is just how home ABA programs are designed.  They are designed for their to be parent training and for parents to take suggestions into account.  If there is a center -- the therapists have made it how they would like it, and aren't in a situation of being in someone's home and needing things to be a certain way to do their job effectively, and not being able to do anything about it.  Also you can drop them off -- they are not coming to ask you things every few minutes, or needing this and needing that.  

 

For us home-based is the right decision for a few reasons.  But it is really irritating at times, for sure, to come be interrupted and have to pick up after them.  It is intrusive.  It is not even like it is the two of us thinking it is intrusive.  I have read "pros and cons of home-based vs. center-based" and a con of home-based is that it is intrusive.  

 

So I wonder if your same funding could be used for a center?  My funding could go to a center, if there was a space available.  There are a lot of people who prefer a center.  Everyone with a job.  Everyone who doesn't want to be stuck at home with their other kids during therapy hours.  This has changed as my son has gotten older, but I used to feel like I was stuck at home with my daughter.  Now my son is older and it is not the same, but when he was brand-new I would feel that way, and miss outings I had with my kids that now were replaced with being stuck at home.  

 

I also used to (again, not so much now) have my other kids watch tv while I observed his therapy and had parent training.  It did not work out, a lot of days, for me to either get anything done, or spend time with my other kids, during therapy.  I would need to be in observing and being observed doing things with him.

 

But this was more needed.  I needed to know how to handle things, I needed to be observed with him, and I needed to know what he was doing so I could work with him the rest of the day and know what skills he was working on and get ideas for how to add that into the rest of the day.  He was having a lot of behavior problems.  I had to and needed to make him my number one priority, I had to let some other things go for a while, b/c I really had to work with him.  That is where we were at for a while.  But that situation got better after.... about 4 months it was better, and quite a bit better after 6 months.  After a year (and when he was age 5) it would be rare for things to come up or me to "need" to be in observing.  I still need to keep up, but it is not so difficult, it is more at my convenience now.  

 

But realistically a part of me is wondering -- you don't have time to do parent training, but you are going to have time to work with your child instead of the therapist?  I can see that you might schedule your day differently, if you weren't expecting the therapist time to be time for you to do other things.  It is irritating -- but the fact is -- maybe that can't be "do other things" time, in the beginning.  Maybe you have got to hover around some, and then do chores or kid things where it is not going to bother you to be interrupted all the time.  That is what i have done.... dishes and laundry are fine for interruptions.  They are good things for me to plan/expect to get done.  But some things I just do not like to be interrupted, and it is better for me to do them at a time when I can be in charge of my home, not sharing my home with a therapist.  

 

I also do really like my son's therapy with the therapists, and like them, and think they are a good part of my life and my childrens' lives.  After about 6 months, my daughter was able to participate with my son all the time, whenever she wanted.  In the beginning that was not possible, but in our case, it was more short-term -- it was not going to be like that forever.  It is much easier/better for everyone since she started being able to be involved.  But we had to wait for my son to work up to a place where that was appropriate and good for him.  Before he could not handle the distraction.  

 

But anyway -- I think there are some maybe-unwritten expectations that go along with home ABA, that don't seem like you are able or willing to do.  And that is okay -- there is nothing that says "you are wrong if you don't do home-based ABA therapy with an outside therapist."  If it works out I think it is a great thing to do.  If it doesn't work out -- then I think I would get to a point of highly resenting and disliking the therapists and their messes and their "excuse mes" when they ask for things.  But I do think they also have an expectation of the parent being interested in what they do, being willing to work with them and follow up on things they are doing, and being willing to make some changes in the home.  

 

I think with renting -- that it is worth a shot to ask the landlord.  Maybe your landlord would not be willing -- but some landlords might be more willing to work with you.  That is if the whole gate-latch thing is not just plain stupid.  It may be.  I declined getting a locking box to keep some of MY things in, that was brought up to me.  But no one got huffy -- they just seem like they like it and that other parents they have worked with have liked it.  But I do my best to consider their suggestions as I am able.  I have needed to buy a few things here and there, most of it has been no big deal, but I have agreed with it being useful.  It has not been for things I think are stupid and/or not needed.  

 

Also, with our agency it is possible for me to call and say I don't think a therapist is a good fit for my family.  So I think that is an option, too.  

 

I have also heard, around locally, that there are people who discontinue therapy for a while and are not sorry.  They got started with the home therapist, and then felt like they would rather do it themselves.  I think it works out well, from what I have seen.  Some people also will switch from home-based to center-based.  

 

For us, I am more pleased with how things are going than some other people I know locally.  I think this is partly my son, partly the therapists we have had, and partly that I am better at not minding the irritating things.  I think this is partly my personality.  I was the youngest kid in my family and had to get used to things being not on my terms (though I vastly prefer things being on my terms in my own home and with my own kids).  If it was my oldest sister in this situation, I think it would be much more difficult for her, b/c she is so much more used to being the one in charge in a home/family/kids setting.  But for me I am someone who credits the home program we have for so much.  It has been great.  It has been great enough that I think I will probably forget the irritating things before long.  Or it will be funny, "oh yeah, my daughter vacuuming up crumbs, ha ha ha."  If I did not like his program, I think it would be more like "nothing came of it, AND my daughter vacuuming up the crumbs, grrrrr."  But it has turned out to be a really good fit for my son, and that makes the irritating things seem like they are worth putting up with and even like they are minor in the scheme of things, set against all the positives.  Plus by now I enjoy seeing his therapists and spending a few minutes talking with them here and there.  

 

Also, I was at a point of feeling like "I need help."  So I was willing to accept, and even desirous of, the parenting advice.  I think the parenting advice is so irritating and insulting and hard to take for some other people I know.  They like how they are doing things and don't want to change, they have good things going with their kids, they are more ambivalent about the idea that their child needs services and the idea that their child needs/requires things to be done the way the therapist wants.  But I was past that point -- we did not have a good situation, we had a bad situation, I needed help.  So just a different situation, and one where there parent-therapist relationship is a little different.  Also I have been very fortunate to have good therapists for my son.  

 

I also had a bad experience with the center in my town, for speech and OT, and pulled him from there.  They were "not a good fit" meant they were bad with my son, my son had bad times with them, he would have been better off not being in there.  If they had been inside my own home bossing me around -- I think I would pull out my hair.  It was the right decision to take him out of there, even though it meant he didn't receive those services for a while.  

[Crimson Wife]

Hi Crimson:

 

I am not understanding the term subcontracted agencies. We got our services paid for except for copays from Kaiser.

 

Kaiser runs all the ABA in our area through Easter Seals but Easter Seals does not have the capacity to serve all the children who need ABA. So they subcontract out to a bunch of different agencies. We only deal with the subcontracted agency and have never had to go to Oakland to the main Easter Seals center. I had a list at one point but I think I recycled it because it was old and likely out-of-date.

 

If you start contacting agencies (CARD, STE, Trumpet, Positive Behavior Supports, First Steps for Kids, etc.) they should be able to tell you if they are subcontracted with Easter Seals for Kaiser coverage.

[Guest]

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[Guest]

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[Lecka]

The center in my town has ABA, speech, and OT and they will schedule kids back-to-back with transitions/breaks through their sensory area.  So -- kids can be dropped off for 3-hour or 4-hour blocks of time.  For a much younger kid that is probably still too long, but in a year it might be very reasonable.  It is also possible to pay for private transportation here, and there are people who car-pool, b/c a lot of people are driving quite a ways for the center.  Some insurance will pay for private transportation if it is qualified as a necessary service, but mine does not, so I don't know too much about it, I just know sometimes it is possible for some people to have it be covered.  

 

It has a pretty nice waiting area, too, and is near a coffee shop -- It is not such a bad place to go and be able to do some errands or go with a lap-top to the coffee shop.  It is near the library.  

 

It was a poor fit for my son, but someone on FB just posted a picture with an amazing update of her son there, and she is really pleased with how it is working out.  So -- I do think it is good, they just did not know what they were doing with my son.  

 

For me it was also a huge hassle, at the time, to get my son dressed, into the car, keep him in his seat (we ordered the huge Britax carseat which worked great, but it took a while to arrive in the mail), get him into the building, keep him calm in the waiting area, etc.  It was a huge, huge hassle.  Then he would usually be very upset afterwards and I would be calming him down for quite a while afterwards.  It was just not a good situation.  But if it had worked out, I could have done a 2-hour drop-off and headed out with just my daughter.  It just didn't work out, and the home-based services we have are a much better fit in every way.  But that is just how it worked out for us locally.  

 

 

[happycc]

So basically the schedule had been homeschool the older kids in the AM while ABA is going for number 7. All number 7 wants during ABA is to eat and that requires me to make everything for me. Not ideal. Number 8 wanders around-gets diaper changed, nurses, eats. Sometimes 4,5,6 gets tutors who come in during this time. Spanish tutor or gardening teacher. AN online math teacher. The online math teacher situation is rough going when you have ABA happening at the same time. Number 7 screams and balks and runs around and it gets interference on the computer. Life is so much quieter without the ABA therapists here. Number 7 is on ABCmouse right now. Plus on top of everything, I am running a nonprofit organization and have meetings with interns during this time. UGH! It was horrible during the summer. Interns are gone so I don't have to deal with this. Everything was happening all at the same time. The timing of everything was horrible as the interns schedule was not as flexible as was perceived.

 

Numbers 1,2,3 are older but do not help nor live near by to help but requires me to drop everything and talk to them on the phone and drive up to where they are because they have frequent teen issues as my number 2 is pregnant now. And I have had to cancel everything when she has a prenatal appt and drive up and be with her. 

 

Then a quick lunch, get number 8 down for nap. Get afternoon snack and water packed.

 

Get number 8 up from nap and rush to Speech for number 7 and 8 at another center. 

 

Then rush numbers 4,5,6 to their other programs: piano, park day, gymnastics, a reading program

 

Number 8 gets an infant specialist and speech therapist that also comes to the house. 

 

The 1st clinical supervisor actually left before we started home ABA. He was just there for the testing time and then they said they had to reorganized the staff. I sense that this new supervisor has some personal issues that is affecting her. I can tell by the way she talks. Some kind of anxiety or something going on. 

 

I don't think I can do another center base program. I am driving too many places as it is. 

[Crimson Wife]

If you are getting services through the Regional Center, there is supposed to be a way to get transportation to and from center-based services like speech, OT, and ABA. A bunch of the kids at my DD's Early Intervention preschool program got medical transportation services funded by the RC. I preferred to handle transportation myself because that way I got a chance to talk to the teacher, but in your situation, I would definitely pursue it.

[happycc]

yeah the nearest center is an hour away apparently. 

 

No way am I transporting back and forth an hour. 

 

No we are getting services through kaiser. I was told to get a hold of Autism Heath Insurance Project to switch to a subcontractor. 

 

SO our two choices are Pacific Child and Family and the other is First steps for kids..any experiences? 

 

If these don;t work , i am just going to hire some child development students out of pocket and give them some ABA books from amazon. One is listed in one of the above posts. 

[Guest]

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[happycc]

Hi everyone:

So I am going to give one more place a roll: First steps and waiting until they are ready for both boys. 

Then we will see how it will go. 

 

If not, then we are moving on to plan B...hiring someone to come to my house like an ABA student. 
Where do you find ABA students....craigslist?

[happycc]

By the way anyone here has a child who has intense fear of going to the bathroom by himself. he has to have someone accompany him which is really difficult if we are all busy. Plus he wont; wipe himself. He is 5yrs old. He will scream shout cry and pee in his pants. We have had to put a pull up on him at nights as I have found out he pees in pants because he is too scared to get up in the middle of the night or early morning to go pee. This started about a good 8 months ago. No major changes happened to our family then. 

[happycc]

Ok now they are changing it to STE Consultants. I am getting very close to just hiring a friend to handle this now as I am highly annoyed with them. 

[Crimson Wife]

I've heard good things through the grapevine about STE. Hope everything works out for your family!

[Guest]

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[happycc]

STE consultants did a good job with my youngest son who is now 4 years old.

His main issues are really minor at this point: articulation, fine motor delay with fisting still, having to undress full when going number 2, needing to sniff me constantly 

 

I think they could have worked more with my older son who now has a dual presentation of ADHD and ASD and possibly dyslexia. 

He is still screams and can be pretty rough and aggressive to himself and others. Just a pretty intensive kiddo. 

Academics is a challenge for this kid: reading, writing mainly

Focus and attention issues too

 

We had two ABA therapists with STE consultations to begin with. I liked the one for the older kid and got rid of the one for the younger kid and moved the one for the older kid to the younger kid since he was lower functioning at the time. They got a new one for the older one. He was ok but I could tell they didn't really bond all that well and his services with my son ended in November. We just have supervisory hours now. I really liked our clinical director too. However in Jan our ABA therapist for the younger kid left to work with Kids Overcoming. And we were really bummed. We have a new one and he is ok. Plus our Clinical director changed position so in one month we got a new ABA and a new Clinical Director. Sigh. So much turnover. 

 

Remember this is our third ABA company since we started this whole ABA situation 5 years ago with my 7yrs old.