XP - Dealing with inner demons today

[muppetinma]

If I'm going to post about the journey of Andrew, I've got to post the good and not so good. This will likely be word vomit and full of typos. Sorry in advance.

How do you know what's right and what's wrong? How are you supposed to know what choices to make and whether the payoff will be worth it? Today, I'm really struggling with this - specifically the choice about how aggressively to pursue therapy. Andrew gets between 6-8 hours of structured therapy a week right now. Most of it is speech, with some behavioral and general skill things thrown in. This is in addition to what we work on at home by ourselves. This is all in preparation for full-time ABA. ABA is what is the most highly studied and recommended treatment for ASD. Everything you read tells you to do this, do it a LOT, and to do it early. DH and I did our research, found a group of therapists we liked, and went through their barrage of evaluations and questionnaires. They think it's a good fit for him and want to get him started, as soon as a therapist becomes available. They want to start with six hours a week, but eventually work up to 20+.

Because the American healthcare system sucks, ABA isn't covered by insurance. (This is in the process of changing, but not quickly). Even if we take our time getting into this, it would cost an obscene amount of money out of pocket.

I sit back and marvel at my kid and how well he's doing with what we've got going on. He's starting to use two and three word phrases. He's starting to communicate his needs. He's starting to understand emotions a bit. He doesn't have aggression problems. He's not losing abilities. He doesn't have a whole lot of obsessive behaviors. I know that all can change, but if I worry about the what-ifs in this department, I'll go crazy.

If we jump into ABA head on, our life is going to change drastically. We will all have a lot less downtime. DH will have to work All. The. Time. He could work 365 days a year and we'd still have to bust into our savings and investments to afford it. Andrew would never see his dad. The level of resentment between DH and myself would skyrocket.

ABA is what everybody in the field talks about. It's supposedly what works. But at what cost? Would Andrew thrive with the recommended therapy? Or would he thrive being able to see his dad and go to the playground? If the areas he needs the most help in are social, would he really benefit with intense one-on-one therapy?

I've been driving myself insane thinking about this. But the more I think about it, the more I want to abandon ABA. I just think that the damage the expense and schedule would have on our family dynamic would be devastating, and I'm not even sure if there would be a sizable benefit. The unknown is killing me. Am I doing Andrew a disservice by not going with what "works?" Just because ABA is what is recommended, that doesn't mean that other things won't work, right? Ugh.

I haven't talked to DH about my feeling about this too much yet. I feel like I need to know how I feel before I talk to him, but I keep going back and forth.

If you made it through all that, here is a drink on me - :drink: Also, here is the obligatory photo of my cute kid.

[craftyone]

Does your state have a Medicaid waiver for disabilities? My son qualified under what is called an EDCD waiver back when he was 3, but there are different waivers based upon the disability(which we will pursue when he hits the minimum age). We get 20 hours a week of ABA through medicaid. We also have private insurance that has ABA coverage.

My son is about to turn 5. Here next month we are moving him to a full time private preschool that teaches ABA, and after school hope to due 10 hours a week of ABA at home. Luckily most of the cost is covered and they time of year with when deductibles are due we only will have to pay the Max yearly out of pocket. I plan on throwing in speech when we can. Honestly I know it's hard, but my son loves the structure. He is sad if the therapist can't come that day. I don't see it as him being in therapy all day. Most of the time they have tons of breaks and make it seem such not like 100% working all the time.

I've spent the last year pushing and pushing for as much as I can, because I know it really is what will help him. I've finally had 4 complete months of ABA in a row (1 on 1) and I can see such changes. I can feel like I can go to the bathroom without feeling like he'll hurt himself, bolt outdoors etc.

Oh and because we qualify for the EDCD waiver I get respite care which allows me to have a careworker come here (usually to help watch my son) so I can get other things done.

[craftyone]

I see you are from Atlanta

dbhdd.georgia.gov/developmental-disabilities

dbhdd.georgia.gov/dd-community-based-services

[hopecounts]

OK I admit to bias because ABA has been beyond Amazing for DD so read the following with that in mind.

ABA is the gold standard treatment for ASD because it works, ASD isn't a Intellectual Disability, or even a Speech problem it is a social/emotional disability.
At your son's age that is not as apparent because most kids have limited social/emotional skills at his age. And yes ABA will help with that, they will work on him with basic skills (from something as simple but important as eye contact and turn taking on to how to have a give and take conversation which kids on the spectrum usually struggle with) and often set up opportunities to work with him and other kids as well to address play skills once you reach that point.
ABA helps retrain the brain and work on those skills to help the child be the most successful and independent they possibly can by addressing those needed skills. Given how well he is doing ABA could do amazing things for him and really help him be comfortable in a mainstream classroom/the real world as he gets older.
Now that said just because they recommend 20 hours doesn't mean you have to do 20 hours, figure out what works for your family and do that.
We personally shoot for 20 hours of therapy time total (OT,ST, and ABA) which seems to be working for DD.

[craftyone]

We qualify for 20 hours a week too, but 5-10 is generally used for administrative purposes (ie the BCBA reviewing reports, family training, paperwork) and we do 10 hours of 1 on 1.

[muppetinma]

Georgia has medicaid for special needs, but they won't cover ABA. Neither will our private insurance. It would be 100% out of pocket at this point, as well as the foreseeable future.

The problem I'm having, if you even want to call it that, is that Andrew is SO high functioning. He's great with eye contact. He's great with taking turns. He's great with following directions. He's not quite engaging other children without prompting, but will play when they initiate. And he JUST turned two this past weekend. I work with him for several hours a day on these types of things. I've taken workshops in ABA, and I spend an insane amount of time doing research on it and other therapies. I just feel like we've got a good thing going. He's starting mainstream preschool in the fall with a therapist/aide assigned to him. I'm just feeling that at this point, I want to wait and see how he does with all of that. Then, if we decide we need more help, we'll go down this route again.

[hopecounts]

You are his Mom and you know him best trust your instincts, if they are saying KoKo do so.

[craftyone]

As another option, when does your school system start with IEP's? Our state allows us at age 2. When you say your LO is in preschool is that private or public? I would look into if you are doing private, what the school system has to offer in regards to therapies. At least speech/OT. My son is going to private preschool for a year before kindergarten, but our district is still required to give some services because he has an IEP at the private preschool.

[muppetinma]

The school system starts at 3 here. He'll be in private preschool in the fall. When he turns three, he can enter the public special needs program. He doesn't have to wait until the beginning of the school year. We'll wait and see how he does in the private school setting and then reassess from there. But yes, when he is of age, he can get services even if he stays at private school.

[litebright]

We considered ABA. To do even close to a reasonable # of hours -- 10 per week -- would have cost us $60K a year. OOP. No insurance coverage for autism at the time (now we have some OT and speech visits covered), and we make way too much to qualify for needs-based assistance. I tried and tried and tried to find a way to make it work, to get it covered, and in the end every agency, insurance agent/broker and advocacy group could only say "I'm really sorry." There are many other families in this same boat. My DD1 aged off the wait-list while waiting for state coverage for ABA. We were on our own, except for some initial financial help from my parents and about $1500 a year from the local development disabilities board (non-needs based help).

My DD1 is very high-functioning. Very few undesirable behaviors and no tantrums, aggression, etc. Social skills are her major deficit, although she had speech and fine motor when we started. After doing weeks of research and interviews, we chose RDI (Relationship Development Intervention), which for us worked because it taught US the skills to interact with her in ways that improved her interaction skills, to implement in every day life beyond therapy hours. This was combined with in-school services and some private speech.

Yes, ABA has the years of peer-reviewed study. I'm not knocking ABA. But IMO it's not the only, or necessarily the best, choice for every kid on the spectrum. Newer, psychology-based therapy approaches haven't had the time or resources to be studied, or are in the study process, but I don't think that makes them less worthy a choice so long as you are careful. I do not consider -- and I think most people in autism-world don't consider -- choices like RDI or DIR/Floortime to be fringe therapy options, and we've personally seen great growth in my DD1 with them, along with a variety of other therapeutic activities and actual therapies that we've done.

The other thing I love about RDI is that it is HUGE on parent resources and support. Seriously, their online resources can only be accessed if you have an RDI consultant, but they have tons and tons of incredibly useful information compiled for and from other parents and the network of RDI consultants. The in-office therapy is only the tip of the iceberg. They put a huge emphasis on not just training, but educating parents and equipping you to be an effective parent.

I totally get the struggle. For us it was a matter of balancing both a treatment that we felt would be effective for DD1 and that wouldn't bankrupt us or strangle our lives as a family. If she had been too severely impacted, the choice would have had to go a different way. Luckily, we were able to find a core treatment that was the right balance and that served her, and us, very well.

[KB]

DS started ABA last month. I know it is early, but I haven't seen any measurable difference in ability or behavior. He is also high functioning but we are starting to have tantrum and compliance issues. We switched insurance to have coverage but even then there were only 2 groups in our entire region that accepted insurance and we had to wait almost a year for a therapist to become available. **disclaimer** I know it's still early in the process

[auntie]

Apr 17, 2014 16:28:38 GMT -5 muppetinma said:

If I'm going to post about the journey of Andrew, I've got to post the good and not so good. This will likely be word vomit and full of typos. Sorry in advance.


Post away. The more information, the better people can answer appropriately.

How do you know what's right and what's wrong?

In hindsight.

How are you supposed to know what choices to make and whether the payoff will be worth it?

I always polled my experts, synthesized the recommendations in the context of the person offering an opinion and trusted my gut.

The best rubric I've found was the one offered by DS's psychologist. Consider where you want/expect your child to be in 5-10 years. What skills will he need to thrive there that he needs to learn? Focus on teaching him those skills so he'll have them when needed. In your case, 5 years out is about 7- Do you see him independent in a mainstream classroom? Do you see him in a hybrid setting with part time inclusion on top of an intensive support classroom to prepare him to brighe to mainstream in 3rd?

Today, I'm really struggling with this - specifically the choice about how aggressively to pursue therapy.

It's hard to say.

You've mentioned a couple times how "high functioning" your DS is. When docs use this term, it only means they don't think your DS has an intellectual disability, i.e. his IQ is over 70. It can be hard to get an accurate IQ on any child this age, but with strong rote memory skills. hyperlexia, adult-like interests and  occasionally very advanced speech, some littles on spectrum can seem smarter than they actually are.
How did he get an ASD dx at 2? Does he have a speech dealy? Fine motor issues? SPD?

Andrew gets between 6-8 hours of structured therapy a week right now. Most of it is speech, with some behavioral and general skill things thrown in. This is in addition to what we work on at home by ourselves.

Is the work you do at home overseen by his team? Are they giving you "homework"?

This is all in preparation for full-time ABA. ABA is what is the most highly studied and recommended treatment for ASD. Everything you read tells you to do this, do it a LOT, and to do it early. DH and I did our research, found a group of therapists we liked, and went through their barrage of evaluations and questionnaires. They think it's a good fit for him and want to get him started, as soon as a therapist becomes available. They want to start with six hours a week, but eventually work up to 20+.

Anyone who's been knocking around Autismworld knows ABA is the only therapy protocol with years of peer reviewed study. For the right kid, one with challenging behaviors or few adaptive skills, ABA can prepared them for inclusion in less therapeutic settings. One downside to ABA is that it tends to teach more scripted interactions rather than actual social thinking. Floortime is another approach that could be useful for a younger kid, either with ABA or perhaps instead. ESDM might be a better choice for some little kids. It has some ABA features but adds a more Floortime approach along with it to offer the best of both plans. 


I'm always a little wary of taking therapy advice from the actual therapists. There's an old saying that when you only have a hammer, everything looks like a nail. For this reason, I perfer to poll DS's dev pedi, psychologist, psychiatrist for input since they don't stand to gain financially from the choice. 

Cobbling onto what litebright said, I don't feel ABA is for everyone. Nor do I think the sense of urgency around therapy is valid. I mean if a kid is so impaired and atypical, go for it. He'll learn skills to help him settle in better, but it's not going to fundamentally undo his ASD. FWIW, the most powerful therapy for DS has been a combination of CSIT (like RDI) and CBT- something most practitioners won't do until a kid hits a certain level of maturity. DS was about 7 before we started with CBT.


Because the American healthcare system sucks, ABA isn't covered by insurance. (This is in the process of changing, but not quickly). Even if we take our time getting into this, it would cost an obscene amount of money out of pocket.

Would a Katie Becket Waiver pick up ABA? Will he get ABA in the public preschool setting? Most insurance companies consider ABA to be education rather than medical tx.

I sit back and marvel at my kid and how well he's doing with what we've got going on. He's starting to use two and three word phrases. He's starting to communicate his needs. He's starting to understand emotions a bit. He doesn't have aggression problems. He's not losing abilities. He doesn't have a whole lot of obsessive behaviors. I know that all can change, but if I worry about the what-ifs in this department, I'll go crazy.

It's great that he's doing so well. Whatever you're doing must be right at this point. Things could change, but it's unlikely he'll regress- that's pretty uncommon. Obsessive behavior and special interests require a certain amount of bandwidth- you may see these as more of an issue closer to 4.

If we jump into ABA head on, our life is going to change drastically. We will all have a lot less downtime. DH will have to work All. The. Time. He could work 365 days a year and we'd still have to bust into our savings and investments to afford it. Andrew would never see his dad. The level of resentment between DH and myself would skyrocket.


I think it's important to keep a perspective. If ABA is what he needs- then it's best to make that happen. It's rare that a higher functioning kid would need ABA for years and years at a time. It could be something you do for a year until school takes over or until he doesn't need it anymore. DS attended a private reading lab school- it was crazy expensive but we felt strongly about making it available. Yes, it bled us dry and required me to drive daily, year round to another state to make it happen. We knew going in it had the best chance of making a difference and that it would be 3 years- tops.

ABA is what everybody in the field talks about. It's supposedly what works. But at what cost? Would Andrew thrive with the recommended therapy? Or would he thrive being able to see his dad and go to the playground? If the areas he needs the most help in are social, would he really benefit with intense one-on-one therapy?

Gold standard ABA is 40 hours. It's a rare kid who needs/gets that much. I don't see how 20 hours a week would prevent having a life. 

I've been driving myself insane thinking about this. But the more I think about it, the more I want to abandon ABA. I just think that the damage the expense and schedule would have on our family dynamic would be devastating, and I'm not even sure if there would be a sizable benefit. The unknown is killing me. Am I doing Andrew a disservice by not going with what "works?" Just because ABA is what is recommended, that doesn't mean that other things won't work, right? Ugh.


It's a tough spot. What does your dev pedi/psychologist suggest? On one hand ABA isn't the only therapy, but it can be life changing. You don't want to look back and wished you'd done it. If there's one theme in special education it;'s that there's less and less available for kids as they get older. Plus it is arguably better to do as much as you can before kindie when pull outs start to impact instructional time and can create a situation where a child is a guest in his own classroom.

I haven't talked to DH about my feeling about this too much yet. I feel like I need to know how I feel before I talk to him, but I keep going back and forth.

I get a sense that this situation is impacting your marriage/relationship. Are you and dad not on the same page vis a vis ASD and the need for treatment? Does dad share your sense of urgency or are you sort of alone with your worries about this? BTDT, it can make all of this harder to figure out. DH is a world class dad to DS, but it took a while to get him to understand what we were up against.

If you made it through all that, here is a drink on me - Also, here is the obligatory photo of my cute kid.

[hopecounts]

Apr 18, 2014 7:47:32 GMT -5 KB said:

DS started ABA last month. I know it is early, but I haven't seen any measurable difference in ability or behavior. He is also high functioning but we are starting to have tantrum and compliance issues. We switched insurance to have coverage but even then there were only 2 groups in our entire region that accepted insurance and we had to wait almost a year for a therapist to become available. **disclaimer** I know it's still early in the process

In our case the first month was a lot of easing DD into ABA type work.
The therapists focused on making her successful so she would learn their expectations and how therapy time would work without stressing her out and creating a bond with her so that she would be excited for 'playtime' with them. 

Basically setting her up for success the first few weeks so it was a positive thing rather then upsetting for her.
Once they got into a rhythm and she was used to them they started pushing her and upping her VB-Mapp and general goals and from there DD took off and has been doing great and making such wonderful progress that we are thrilled!
I recently watched Her day 1 video compared to her 6 month video that I took and they are so incredibly different it is amazing to see.

Though some of that is our team keeps us very informed and we work with her religiously at home as well, whatever skills are being addressed in therapy are reinforced by us so that has helped keep her moving and generalizing skills.

[litebright]

I just want to ditto on something auntie said. If you're interviewing ABA therapists, they're going to say ABA is the best fit. The ones we interviewed surely did, and they touted ABA for social/pragmatic skills when I knew from my own research that there is controversy over how well ABA does with the higher-order, non-rote social skills that we felt were crucial to address. And IME, because ABA has the study behind it, it was the default recommendation from the child psych who dx'd DD1; I didn't get the sense that she knew much about the other therapeutic approaches out there, and that there might even be a CYA element to not recommending them. If we wanted to explore anything other than ABA it was largely on us to inform ourselves and assess the potential efficacy.

I had to do my own research and ask a ton of questions from neutral parties at advocacy groups, other parents or therapists that we *weren't* considering; I remember one conversation in particular with someone at an organization we ended up not using, who really gave me some great insight into autism and therapy approaches in general even though she never saw my DD. She was just someone who was willing to take 30 minutes on the phone to help a newbie parent through the first days, and thank God for people like that.

I also found Coplan's book on Making Sense of Autism Spectrum Disorders to be really, really useful in assessing therapies. It gives descriptions of what different types of mainstream ASD therapies are like, but also he has graphs in the book that basically split ASD into four quadrants of functioning and where each type of therapy fits in terms of likely being a good fit, depending on which quadrant your kid falls into. That was really eye-opening for me as a parent who needed guideposts and helped us make decisions.