TTMA ABA therapy

[freezorburn]

It's been nearly a year since we started the process of getting DS's ASD Dx (4 years old, primarily social communication delays; repetitive speech and behaviors; intense and deep interest in a few subjects) and last month an ABA therapy practice finally had an opening for DS. So we've been going through their evaluation process and will be reviewing their recommendations over the next couple weeks, and hopefully DS will start therapy once it's greenlighted by insurance.

I'm starting to get nervous because DS's dad had started this process with what I would call a healthy skepticism but is starting to drop hints that he doesn't want DS to do the ABA at all. He has said that he is skeptical of the ASD Dx to begin with, and in general he is very distrustful of medical and mental health professionals. I'm worried that we might be dead in the water before DS even has a chance to start.

Part of the problem is that it's probably a bit difficult to be convinced of the value of ABA, when we are still learning what it is and don't fully understand how it applies to DS's specific needs. It's also possible that he is concerned about what our out-of-pocket costs may be (some will be covered by insurance, but we still don't know how much) ... but I'm sure he would never admit to that being a concern.

TL;DR -- has anyone dealt with a skeptical SO/co-parent/partner when making decisions about LO's care/treatment? Specific to ABA, any resources or personal experiences that might help de-mystify it for those of us who are in the early stages?

[mamaturtle]

It sounds like your SO sounds like he is in denial of your DS's diagnosis.

I can relate to some of your post and have been in your situation almost 4 years ago.

DH was in denial of DS's diagnosis for the first 3 years of DS's life and DH would blame me for DS's diagnosis. It was rather painful each time DH did this to me. DH did not say no to evaluations or therapies but I did a lot of the leg work in the first 3 years of DS's life making sure DS got all the therapies he needed.

It got to a point where I could not take much time off work while DH was unemployed, searching for work and stayed at home. It was time for DH to step up and participate at all IEP meetings, evaluations and take DS to therapy appointments. It was then that DH stopped with the denial and blame and became proactive about helping DS.

Has your SO spoken or met with the people providing ABA? Is there anyway they have some research articles to provide you both to read? Are you both going to take your DS to a center or will it be provided in your home?

[freezorburn]

Yeah, he has been at all but one of the meetings with the ABA provider. The proposal they have given us is that DS will have two 90-minutes sessions per week, one at their offices and one at home. So, he has been involved.

I will have to ask about articles. We do both have a book called "An Early Start for you Child with Autism" by Rogeres Dawson and Vismara, It seems that ABA principles are incorporated throughout the book. So that has been a big help as to what it is.

DS's dad could very well be in denial ... but I feel that his attitude isn't unique to this situation. It's just ingrained in his bones to be distrustful of medical professionals. And when it comes to psychologists and counseling professionals, they are not to be trusted, at all. He has always been like this, I just never thought he would be unreasonable when it comes to our child's health and development. And, maybe he won't be. But I feel like he is getting ready to hit the brakes on just as we are receiving a treatment plan. And I want to be prepared to advocate that this is something we should at least try, maybe for a couple of months.

[cam]

From what you describe, it does sound like a general distrust of the medical community rather than denial as one of the natural stages of processing a dx. Dx or no dx, does he recognize that your LO needs some extra help? The answer to this question would greatly impact the approach I would recommend taking when discussing your LO's dx and related care.

As for the ABA, are the two short sessions a starting point that the provider will use to get your LO use to the therapy and then work up to a more standard number of hours? Do they do straight ABA or a blend of ABA with another therapy style? "Making Sense of Autistic Spectrum Disorders" by James Coplan might be useful to you, particularly the chapters in the second section which explain many of the common therapy types with regards to where a child is developmentally at a given time rather than the common misconception that there is one best method for all kids on spectrum at all points in their lives.

[numbbears]

DS has been in ABA for almost a year and it's been like he's a totally different kid. Before ABA, he had between 0-5 words/animal sounds at any point and he really struggled to keep focused during therapy. With ABA, they introduced a communication board and after that the speech just started coming and hasn't stopped. So from no speech at one point last year to short sentences and actually communicating with us beyond asking for things, it's been a big accomplishment. But obviously it's so much more than helping with the speech. The one-on-one interaction really worked well for him.

Also, I was the denial parent. I hated the idea of DS sitting in therapy for 20-30 hours a week at such a young age but kept in mind that early intervention was so important. Do they have an observation area at their center? We were able to watch the therapists and line tech interact at one of the places we considered (not the one we went with but it was helpful). Seeing success stories really helped and that's probably what made me really go for it.

[Deleted]

No experience with ABA. Everything I have read and heard advocated for early intervention. You are doing the right thing for getting therapy ASAP.

My skeptical husband has been relating to DS's hearing loss. He doesn't get how DS sounds. The fact that his speech is off. He doesn't get how many times DS says what, or that I have to practically scream at him or that I have to repeat myself a lot. He thinks his hearing is fine, and that DS is just ignoring us and using his hearing loss to his advantage. He doesn't think he needs hearing aids. For some reason, it really helped him to go to our IEP. I was so nervous that he would stand in my way of us getting DS what he needs. But H was able to express to them his hesitation over the special ed label. He was able to tell them that he doesn't want DS to be teased or for him to wear a hearing aid. The hearing teacher told him that DS might outgrow it. Our ENT said the same thing. I am a realist/ pessimist, so I think there is a chance, but maybe not a big chance like maybe 25% chance he would outgrown it (Eustachian tubes). H is an optimist, and seems to be fairly certain he will outgrow it like 95%. That makes him feel better and be more on board, which is good. I guess we will cross that bridge when we come to it.

I think you just have to keep going down the path, and hope he comes around. I understand about the medical bills. We have had so many, and their billing is obnoxious. Everyone makes mistakes, and we have to fix it for them. So many bills I could fill my bathtub with them. It makes H so mad especially because he pays the bills. I can't do anything for him in that but support him. Listen to him, try to find ways to save money. It adds another level of stress to an already stressful situation. Hopefully you will find that your OOP is less then you think.

[freezorburn]

Sept 13, 2016 18:11:59 GMT -5 cam said:

From what you describe, it does sound like a general distrust of the medical community rather than denial as one of the natural stages of processing a dx. Dx or no dx, does he recognize that your LO needs some extra help? The answer to this question would greatly impact the approach I would recommend taking when discussing your LO's dx and related care.

As for the ABA, are the two short sessions a starting point that the provider will use to get your LO use to the therapy and then work up to a more standard number of hours? Do they do straight ABA or a blend of ABA with another therapy style? "Making Sense of Autistic Spectrum Disorders" by James Coplan might be useful to you, particularly the chapters in the second section which explain many of the common therapy types with regards to where a child is developmentally at a given time rather than the common misconception that there is one best method for all kids on spectrum at all points in their lives.

Thanks for your perspective ... I think maybe just having a conversation about whether DS needs extra help would be a great place to start. Because DS's behavior can vary widely in different settings, and his dad doesn't get many opportunities to observe him around his peers, so that might be contributing to his view on things.

The ABA provider started out recommending two 2-hour sessions, but our schedule is too tight so we are now looking at 90-minute sessions. What is a more standard number of hours? He'll also be doing a pre-K social skills group once a week (also 90 minutes) with our local school district. And he'll also be busy with his regular preschool, and other activities (gymnastics and we are looking into Tae Kwon Do) which are not ASD-specific, but in general support the goals that we have for him. I think it's just straight ABA. I'll look up the Coplan book, thanks for the recommendation!SaveSave

[freezorburn]

numbbears, @clarypax, Thanks so much for sharing your experiences. It helps me to think about how I might approach this with DS's dad.

[Life is interesting]

My guy started at 2 with 15 hours a week and by 3 was up to 30. He learned quickly and would not change this! We transitioned to home aba due to insurance at age 4 and did 12-18 and then phased out and have a shadow at preK.
Highly recommend as many aba hours as you can afford!

[cam]

Sept 14, 2016 13:55:19 GMT -5 freezorburn said:

Thanks for your perspective ... I think maybe just having a conversation about whether DS needs extra help would be a great place to start. Because DS's behavior can vary widely in different settings, and his dad doesn't get many opportunities to observe him around his peers, so that might be contributing to his view on things.

If he is still processing the dx, it may work better to set that piece aside. Approach it something like this perhaps: "Dx or no dx, we can both agree that LO needs at least some extra help, right?" ::Your H hopefully agrees with that sentiment.:: "Let's try this therapy, giving it a good solid chance, and if it isn't working, we review our options and try something else. It won't hurt to try." Also, get your H in some situations where he can see LO with his peers. Be careful not to accidentally pit against him with an 'I want you to do X so you will see I am right' vibe, but just suggest family outings now and then like going to the park or a local event aimed at kids or whatever.

The ABA provider started out recommending two 2-hour sessions, but our schedule is too tight so we are now looking at 90-minute sessions. What is a more standard number of hours? He'll also be doing a pre-K social skills group once a week (also 90 minutes) with our local school district. And he'll also be busy with his regular preschool, and other activities (gymnastics and we are looking into Tae Kwon Do) which are not ASD-specific, but in general support the goals that we have for him. I think it's just straight ABA. I'll look up the Coplan book, thanks for the recommendation!SaveSave

30 to 40 is the typical recommendation, though some regions have 20 to 30 as more the norm for what is actually delivered. Some are center-based where the kid goes instead of a regular daycare, and some center-based places have a preschool. Some places are in-home, and the therapist may go along to the kid's activities, playdates, the grocery store, the post office, the zoo, wherever they have skills that need to be worked on. It varies so much by provider and situation of the family (parent's/parents' work schedule/schedules, age of kid, needs of kid, etc).

[freezorburn]

Sept 14, 2016 16:46:59 GMT -5 cam said:

Sept 14, 2016 13:55:19 GMT -5 freezorburn said:

Thanks for your perspective ... I think maybe just having a conversation about whether DS needs extra help would be a great place to start. Because DS's behavior can vary widely in different settings, and his dad doesn't get many opportunities to observe him around his peers, so that might be contributing to his view on things.

If he is still processing the dx, it may work better to set that piece aside. Approach it something like this perhaps: "Dx or no dx, we can both agree that LO needs at least some extra help, right?" ::Your H hopefully agrees with that sentiment.:: "Let's try this therapy, giving it a good solid chance, and if it isn't working, we review our options and try something else. It won't hurt to try." Also, get your H in some situations where he can see LO with his peers. Be careful not to accidentally pit against him with an 'I want you to do X so you will see I am right' vibe, but just suggest family outings now and then like going to the park or a local event aimed at kids or whatever.

The ABA provider started out recommending two 2-hour sessions, but our schedule is too tight so we are now looking at 90-minute sessions. What is a more standard number of hours? He'll also be doing a pre-K social skills group once a week (also 90 minutes) with our local school district. And he'll also be busy with his regular preschool, and other activities (gymnastics and we are looking into Tae Kwon Do) which are not ASD-specific, but in general support the goals that we have for him. I think it's just straight ABA. I'll look up the Coplan book, thanks for the recommendation!SaveSave

30 to 40 is the typical recommendation, though some regions have 20 to 30 as more the norm for what is actually delivered. Some are center-based where the kid goes instead of a regular daycare, and some center-based places have a preschool. Some places are in-home, and the therapist may go along to the kid's activities, playdates, the grocery store, the post office, the zoo, wherever they have skills that need to be worked on. It varies so much by provider and situation of the family (parent's/parents' work schedule/schedules, age of kid, needs of kid, etc).

Ok this rings a bell now. I went back to DS's original evaluation and it recommended 25 hours, but it can be a combination of things, not just ABA. Could be working on things at home that we are coached on, to support what he is doing in ABA or social skills group. "Other structured activities" can also count ... Preschool is Waldorf-inspired so has a strong social component, as well as an approach of just meeting each child where they are. So we count that, even though it isn't ASD specific.

We had a good conversation today with our ABA consultant, and I think DS's dad is a bit more comfortable with what is being proposed. I've also been trying to encourage him to get more involved with preschool gatherings, so that he can see DS in settings with his age peers. So he gets to take him to a birthday party next weekend, and in October they go on a camping trip.