Very frustrated with obsessive behavior

greyt00 · April 2014

WHEN do I have hope of this getting better? Opening/closing doors/drawers, turning on lights..... Saying "light on" or "light off" about every other object/scene he sees (even a picture in a book where there is no light pictured -- well, that would be "light off"). DS1's behavior is worse in places outside our home. I don't want to take him anywhere, even to my parents' house. He is obsessed with the kitchen right now. Ovens and microwaves. Today at my parents' house all he would do is stand in the kitchen, open and close doors, reach for the microwave open door button (thankfully can't reach it yet but it won't be long). We cannot get him interested in anything else. And even trying... it is too hard. Can I just let him stim for awhile? I'm not supposed to, I know, and I feel like by letting him do it for an hour or two I am failing, not doing my job. But if someone who deals with this stuff tells that it's OK sometimes, maybe I won't be so miserable.

He is in 32.5 hours ABA per week (yes, lucky insurance -- though I have been fighting since we started to get them actually to PAY), and the other 13 hours or so per week are day care. He gets 2 hour per week of OT as well, which was already showing progress before he started ABA.

I hate the stimming. It's depressing. I just don't have it in me to try and get him to do something else very much of the time. It's impossible.

hopecounts · April 2014

((hugs)) it can be so hard.

Has your ABA team given you any help in how to address it?

If so and it's not working let them know and see if they can suggest other options.

Is RDI/ESDM an option? It may be better suited to his challenges and I say this as someone who loves ABA but if the ABA approach isn't addressing a core weakness then it may be time to revisit what will help him most.

What does he do if you try to add one to his repetition?

For example if you are reading a book and he says 'no light' could you add 'but there is a chair' (if there is a chair on the page obviously) basically trying to get him back on track to the book? Not to stop it but to try to help him work through it.

And yes ABA says to stop it 100% of the time but I think we have all been there where it's just too exhausting to fight the fight for the millionth time.

But due to their black/white thinking it is important if you are doing ABA to follow through as much as you possibly can and accept that it will cause a reaction or need to be repeated for the millionth and one time if you are going to successfully break the behavior. And more importantly his entire team (DCP, parents/grandparents, etc) all need to be on the same page.

Does your H do his share of stepping in? DH and I have a tag team approach when addressing this type of thing we take turns which helps each of us hang in there longer.

typeset · April 2014

-auntie- said:
Can you retrofit your home to take this behavior off the table? I know families who have gated spaces, installed magnetic locks on cabinets and furniture, locked doors and boxed switches- this allowed them some breathing space to engage the child more effectively with more functional entertainment.

Yup, I was going to say cabinet locks and switch guards/covers. Keep him out of the kitchen if the oven and microwave are too tempting.

We found as ABA ramped its demands, his stimming would increase. Sometimes it's like playing whack a mole. You eliminate one only to find something less desirable taking its place. Your providers should absolutely be able to work with you on a plan for when they aren't there.

Be forewarned that extinction bursts are hell on earth. It will absolutely get worse before it gets better. Hang in there.

greyt00 · April 2014

I don't know these abbreviations: RDI, ESDM, ID.

Yep, it's not fair. IT SUCKS. For now, DS1 is simply not going to my parents' house again for awhile. Maybe that's not the best thing to do, but that's what I'm doing. Especially if my sister is going to be there.

We removed gates and patched walls several months ago. Don't really want to put them up again. Would like to find another way, but there are too many doors and crap everywhere so I guess there is no other way. Not fair to DS2, though, not to be able to roam.

I don't think I have it in me to discuss this week with his BCBA right now. My husband is out of town all week and I don't want to talk about it with her. I just need a few days. Yesterday sucked.

Day care sucks. DS1 gets to stim there, I think. He's usually pushing a button on the microwave when I pick him up. I don't know what we can do about it. We have to work, and they don't have a better set-up after hours. What are we supposed to do?

IMO DH doesn't quite do enough to stop him. I prompt him sometimes. If I'm nearby but doing something else I will say, "X, do you want to read a book? " Sometimes that's enough to wake up DH. Wish I didn't have to do that, though. No marriage advice, please. Try to stick with what I can do and I will figure out how to get it across.

greyt00 · April 2014

And as far as more functional entertainment, I don't even know what that would be. HE DOESN'T WANT TO DO ANYTHING. F**** you autism. Die in a fire.

greyt00 · April 2014

Also, his neurologist wants to put him on Depakote. No thank you. We need to find a new dr. because she is hellbent on this and we don't like her anyway. Have you ever heard of people using Ritalin? My distant cousin really, really did not want to do that, but it ended up really helping her son calm down on similar behaviors.

greyt00 · April 2014

We've FINALLY gotten our insurance company to start paying for ABA. We don't have the ability to pay for a bunch of other treatment, and more to the point, we don't have a way to drive him here and there and everywhere to all these different programs. The place he is now, it's a full-time thing.

typeset · April 2014

greyt00 said:

I don't know these abbreviations: RDI, ESDM, ID.

Relationship Development Intervention.
Early Start Denver Model.
Intellectual Disability.

Yep, it's not fair. IT SUCKS. For now, DS1 is simply not going to my parents' house again for awhile. Maybe that's not the best thing to do, but that's what I'm doing. Especially if my sister is going to be there.

You do what you have to do, frankly. I'd see about having a behaviorist accompany him to someone else's house during the week to work on it.

We removed gates and patched walls several months ago. Don't really want to put them up again. Would like to find another way, but there are too many doors and crap everywhere so I guess there is no other way. Not fair to DS2, though, not to be able to roam. I don't think I have it in me to discuss this week with his BCBA right now. My husband is out of town all week and I don't want to talk about it with her. I just need a few days. Yesterday sucked.

Send him or her an e-mail. You can C&P the OP here, even. Get a plan brainstormed and then you can wait to implement until you have backup.

Day care sucks. DS1 gets to stim there, I think. He's usually pushing a button on the microwave when I pick him up. I don't know what we can do about it. We have to work, and they don't have a better set-up after hours. What are we supposed to do?

We dealt with this and continue to deal with this. What's the kid to teacher ratio? How aware are they of his needs? Can your ABA provider accompany him there? We did that for many months. It helped channel him into more appropriate activities and educate some of the staff about what to look out for. We did eventually change settings when we lost the 1:1 support.

IMO DH doesn't quite do enough to stop him. I prompt him sometimes. If I'm nearby but doing something else I will say, "X, do you want to read a book? " Sometimes that's enough to wake up DH. Wish I didn't have to do that, though. No marriage advice, please. Try to stick with what I can do and I will figure out how to get it across.

Mhm. No marriage advice, but been here, too. Parent training, involving him in clinic meetings, and telling him about what works for me have helped. For a long time he didn't see just how interfering some of the behaviors were and encouraged them. We still disagree on encouraging certain seemingly intellectual "quirks" versus working on social skills. Teaching him the Gettysburg Address by rote isn't going to do shit for him on the playground.

greyt00 · April 2014

typeset said:

-auntie- said:
Can you retrofit your home to take this behavior off the table? I know families who have gated spaces, installed magnetic locks on cabinets and furniture, locked doors and boxed switches- this allowed them some breathing space to engage the child more effectively with more functional entertainment.

Yup, I was going to say cabinet locks and switch guards/covers. Keep him out of the kitchen if the oven and microwave are too tempting.

We put cabinet locks (the magnetic ones) on a few of the doors and most of them have broken. Don't know why. We replaced a broken one and it broke, too. We're cursed I guess. There are too f***ing many cabinets. I guess we will just have to gate off the kitchen. There is a long hallway the other direction from the living room where DS2 can ride and push things, so I guess it's not that bad. The second entry to the kitchen is narrow double doors and we can put a chair against it. Or since it's narrow we can get one of those cheap tension gates. It's the wide openings that really suck.

Is RDI/ESDM an option? It may be better suited to his challenges and I say this as someone who loves ABA but if the ABA approach isn't addressing a core weakness then it may be time to revisit what will help him most.

I would say no, it's not an option, because we don't have a way of driving him around to things that aren't all day. We looked at a private school and a new floortime preschool but neither would work because they are only half day. The preschool was worse, it was a little shorter than half day and not even EVERY day. Nothing is all day, except ABA, probably because it's the "oldest" treatment model, so the most standard, and most established with most options. In 15 years I bet they will have more options, even hybrid ones perhaps.

What does he do if you try to add one to his repetition?

For example if you are reading a book and he says 'no light' could you add 'but there is a chair' (if there is a chair on the page obviously) basically trying to get him back on track to the book? Not to stop it but to try to help him work through it.

That's good, we will try that.

I don't think DS1 has an intellectual disability. All of the trained professionals that have worked with him have said he is smart, and they wouldn't say that just to be nice.

I actually did email the BCBA already. I just don't want to get into a phone conversation.

greyt00 · April 2014

My gut is telling me he is in the right place and we just need to make some adjustments. Maybe the increased stimming is a response to increased demands at "school." Maybe it's in response to the feeding program they started. In general, he does very well at school (I call it school, it's just easier) but I recognize that we need to try to find a way to improve on the dismal day care situation and improve on things at home.

hopecounts · April 2014

It is so hard especially when there are so many different players to keep on the same page.

How does the ABA team communicate with the DCP? Is it directly, through you, through notes?

My ABA team does a weekly update sheet discussing what goals they are working on, what goals she has mastered (if any), what goals she is struggling with, and a 'homework' section which are what we and school need to work on specifically for the following week.

I give this to her school teacher and aide who are fortunately happy to use it as a guide, they aren't as strict with enforcing and working on them as I am at home but at least they understand where DD is and try. They do tend to let things slide and I try to observe periodically and gently remind them that DD can do x or that we are working on Y so could they please make sure to keep that in mind. But it does help that the request is coming from someone other then me initially
DD is the go along to get along type so she will do the minimum requested and doesn't cause problems so in her SN preschool group that means she can get away with slacking.

greyt00 · April 2014

I don't think they communicate much. Day care is at the same facility as treatment, and I think one of the girls I see helping with day care at times also does therapy for Connor's class. But most of the workers in the day care don't seem very educated about the issues some of the kids have. I can't expect that for day care prices.

I guess I will ask the BCBA if she knows of any contacts for finding a private therapist that could help instead of him being in day care. Not like we can afford it, but I can ask. Does anyone know, in general, what school districts do for this type of need from 3-5 PM type of hours? Or do they only operate stuff during the hours that school would be in session? I HATE to ask my dad to drive him twice per day, but if there was something he could do with the school district, I guess we could think about it. Maybe he wouldn't have to do it forever....

greyt00 · April 2014

-auntie- said:

greyt00 said:

Yep, it's not fair. IT SUCKS. For now, DS1 is simply not going to my parents' house again for awhile. Maybe that's not the best thing to do, but that's what I'm doing. Especially if my sister is going to be there.

If you're not up to the wrangling to intervene away from home, this is absolutely the right decision for now. Once you have better control in your home, you can work to globalize that behavior to grandma's and other places. DS used to glom onto ceiling fans, I had to keep him out of Home Depot and Lowe's. What ever it takes.

What's up with your sister? Is she mean, judgmental, ignorant?

None of the above, really, just made a bad joke one time. I think she had a hard time with her son, who is NT, but is in some sort of counseling now. There is 1 weird thing that goes on at their house which I won't discuss. Anyway, I think parenthood did not exactly turn out like she thought it would. Some days she said she had 1 kid not 2 because her DH didn't want more, other days she says it's because her son was so difficult (was extremely wild, hit them a lot -- and HARD). Anyway, after struggling with infertility (we were about to do DE, though my family doesn't know how close we actually came to it), I got pregnant. Nearly the first thing my sister said to me after I told her was, "You're going to be missssssssserable!" She said it sort of gleefully, like it was funny, and I guess she was teasing, but I was pi$$ed. I told her that she should not have said that to me. She apologized. Whenever DS1 is stimming in front of her, I think about this, that some small part of her is laughing at me, that I'm miserable like she apparently was/is some of the time. I doubt she even remembers saying this to me. I don't know. She is probably sympathetic, but I just don't like her witnessing stimming and knowing how hard things are.

We removed gates and patched walls several months ago. Don't really want to put them up again. Would like to find another way, but there are too many doors and crap everywhere so I guess there is no other way.

Probably not. If your DH travels, this may be your only option until he's past this stage. I think the hardest part when you're in the moment is feeling as if something is forever. You'll get your house back.

Yeah, I've resigned myself to putting the gate back up when DH returns.

Not fair to DS2, though, not to be able to roam.

It's not fair for him to have an older brother with autism. Especially if that means he'll be responsible for his care and safety as an adult. If DS#2 is in day care, I'm sure he has plenty of time to roam freely.

Yep. It sucks. But I guess he won't be responsible if he ends up being on the spectrum, too (or have other issues). Too soon to tell. At this point I don't have any real worries with him besides picky eating. I'm watching him like a hawk.

Day care sucks. DS1 gets to stim there, I think. He's usually pushing a button on the microwave when I pick him up. I don't know what we can do about it. We have to work, and they don't have a better set-up after hours. What are we supposed to do?

Are they willing to work with you? Would they listen to your BCBA about why this is harming your DS? Do you have a better option? There's a special needs day care at DS's community college where students in the ECE department provide care after the IU classes are over for those who work. Your local support group might know about options like this.

I've asked and I've told her if we can't improve the situation we might have to remove him (and do what I have no idea). I just don't know what I can expect from $8/hour care. We'll see how she responds. As I've said before, part of the problem is transportation. My dad already drives DS1 to treatment every morning. I hate for him to drive in the afternoon as well. I really want our current situation to work because I can pick up. His school is remarkably only 10 minutes away from my new job. Got the job in December, DS started here the next month. But if we can't, we can't, I'm not above changing it.

hopecounts · April 2014

How much does your DH travel?

Do you get any breaks when he is gone, and work doesn't count

This road is extremely hard and you have to make sure you take care of yourself so you can take care of your son, put on your oxygen mask first and all that.

It sounds like your Dad is around and helpful and I'm sure you don't want to impose but sometimes you have to do what you have to do.

greyt00 · April 2014

-auntie- said:

greyt00 said:

Also, his neurologist wants to put him on Depakote. No thank you. We need to find a new dr. because she is hellbent on this and we don't like her anyway. Have you ever heard of people using Ritalin? My distant cousin really, really did not want to do that, but it ended up really helping her son calm down on similar behaviors.

Why does he see a neurologist? Is he having seizures? Most kids on spectrum see a dev pedi unless they have a comorbid seizure disorder or significant hypotonia.

We were referred there for his initial eval. He had a 23 hour EEG and there were "occasional sharp waves" during sleep only. He had MRI and it was normal (you know, to rule out a tumor I guess in case he has ASD AND a tumor). Absolutely no other evidence of seizures. Some hypotonia but not severe. I honestly don't think he really needs to see a neurologist, and we don't like her anyway.

Depakote is sometimes prescribed for seizures, but like Risperdal it can also be prescribed to treat obsessive behavior, anxiety and aggression in those on spectrum. It can make a huge difference in ability to be available for intervention and improve the rate of progress toward goals. It can also help with tantrumming caused by getting "stuck" on an idea or activity.

To take Depakote you need genetic tests ruling out some condition (some form of mitochondrial disease, I'm sure you know about it). I think the dr. thinks that since my insurance approved (or SAYS they approve) coverage for the blood test, that we should do it. We have a track record of insurance saying they will pay for stuff, and then not pay. They approved the 23 hour EEG, then declined. Dr. had to appeal to get that $6,000 item through. They said they would pay for his initial genetics test and then didn't. Fortunately, the lab ate that $3,600 bill. Plus they declined, declined, declined 3 months of ABA therapy even though the coverage is CLEAR AS CRYSTAL. I finally got that sorted out, I think. Any wonder why I'm not keen on this? Plus, perhaps the best reason of all, my son gags/throws up liquid medication. And he won't reliably eat anything we can mix it in. I HAVE NO F***ING WAY OF GIVING HIM ANYTHING. Especially not twice per day. Kill me now. We already do antibiotic shots if he needs abx. And for fever pain? Suppository up the butt.

Ritalin is an approved medication for narcolepsy and ADHD. If your cousin's behaviors were driven by ADHD, this would be an appropriate choice. Since your son doesn't have ADHD, but rather autism, Ritalin could make things worse. Most clinicians don't prescribe stimulants for ADHD without a dx and many won't dx until 6-ish. Stimulants come with significant risk of side effects. His stimming is likely a function of anxiety and Ritalin will exacerbate that. It could also trigger tics and impact his growth.

I'm getting info second-hand through my dad... so I will just discard. Maybe that kid had ADHD too, I don't know. Anyway, DS's growth is already stunted by his crappy diet.

hopecounts said:
How much does your DH travel?
Do you get any breaks when he is gone, and work doesn't count
This road is extremely hard and you have to make sure you take care of yourself so you can take care of your son, put on your oxygen mask first and all that.
It sounds like your Dad is around and helpful and I'm sure you don't want to impose but sometimes you have to do what you have to do.

Not much. This is the first time in a year. He might travel again in August but I think I can squash that trip if I have to. When he goes, it tends to be for a whole week. It's rare, though. He also have to work in the evenings some, every other week. Because of that he wasn't supposed to be traveling anymore, but if they get busy, what do you do? I don't get much breaks. My dad took DS1 for a walk for part of the visit yesterday. When he got back, that's when I left because he wouldn't stop stimming. Yeah, we'd probably be dead without my dad.

hopecounts · April 2014

so it sounds like you are doing a lot of the care here while working and taking care of a second child with minimal time to decompress with your H working extra time in the evenings regularly.

Can your dad come to your house once you have it blocked off again while you go do something for yourself. Even an hour at a bookstore or starbucks or walking/sitting in the park with some consistency might help you recharge and feel better.

I had this realization several months ago, shortly after DD's diagnosis, and my MIL and Mom have come through for me. Between them DH and I get some downtime a couple times a month and it is amazing how much knowing that time is coming helps me get through the harder days. I can do a countdown, (10 more days and I get a break) just that reminder that I just have to get through today helps. It has helped my sanity in amazing ways.

DH and I also make sure we each get an hour or 2 to ourselves each weekend most weekends (easter and holidays can be crazy for obvious reasons) and that helps. We both need it, DD is a full time job in herself and with DH working and me being home with her full time we have realized we have to schedule time for ourselves to keep our sanity.
So please reach out to your support system and be honest about needing help.

I know this isn't what you posted about but it may be a piece of what is going on for you and how you are feeling right now so wanted to address it, I hope that is OK.

greyt00 · April 2014

I'm going to make a rule, if it's DH's off-week, he puts DS1 in bed every night. This way if it's his on-week, but he's working, then it's still like we're taking turns because he'll do it every day of the other week. I get tired of reading the same 3 books every night, that's all. We used to toggle days, but now we'll toggle weeks. I will also tell him that I would like for him to try to read to DS1 more. That seems to be one of the few ways to get him into if he's stimming. Even if it's Brown Bear again. Then branch off to something else from there. Reminds me, I should order another copy of that book. One for upstairs and down. -_-

hopecounts · April 2014

Sounds like a good plan.

greyt00 · April 2014

I'm not trying to knock DH.... He does virtually ALL the cooking. I hate cooking! He made me lasagna before he left which I can get 4 meals out of. He takes DS1 to the grocery store every week (well, this past Saturday DS1 wouldn't go, that's a first) so that actually feels like a break. I get to be with DS2. And he has started taking DS1 for a drive on the weekend in hopes he will fall asleep. This may sound sad, but he doesn't quite get enough sleep, and then he falls asleep on the way home during the week, which is not good. This drive usually overlaps a little with DS2 naptime, so then I get a short break. I forgot about these things, probably because they didn't happen this weekend. I won't lie, we are both frustrated with the after hours work DH has to do now. But this job provides the insurance coverage few get (even if I had to fight to get it). Many people have fought with their insurance company over less. Anyway, I think some parent training on a weekend here sometime soon could help. Simply having a whole week off from DS1's bedtime might help. Something I can count on b/c DH should NOT be working, you know? I might need to be the enforcer a little, too. He takes turns with 1 other person. If it's not his week, WHY is he checking email? He needs his break even if I don't need him to have it.

thefuturemrskudla · April 2014

You are obviously a very dedicated mother, well educated on how to help DS. NOTHING IS PERFECT IN REAL LIFE! It is impossible to monitor and correct any child's behavior 100% of the time. Don't be too hard on yourself. DS will continue to make progress, and you will continue to be a great advocate and parent.

hopecounts · April 2014

I didn't think you were.

And I don't think less of him for doing his job, you have to do what you have to do.

But you still need to take care of yourself. And so does he like you said he needs a break from work no matter what.

Oh and we had to resort to attempting the car nap for a while when DD was fighting sleep but still desperately needed one. So absolutely no judgment there.

Something about the pressure of the carseat restraint and the movement of the car worked to put her to sleep sometimes and I did what I needed to.

greyt00 · April 2014

OK that's good. I was kind of enraged earlier so I wasn't sure how I sounded. ;-)

I'm terrified of the future as well, as many of you understand. I don't want DS1's life to suck and I don't want DS2's life to suck. DH and I will die and my 2 (I'm projecting) will have sad lives. Doesn't help that I slammed my toe into the foot of the bed last night and I think one of them is slightly fractured. I'm also ticked off that no one else in my family deals with this. So there is that distant cousin.... What about my other cousins who have hordes of children, no infertility and no neurological / emotional issues. They could pop out 100 each and this wouldn't happen. They are SAHMs, too. Rainbows and ponies all around.

I'm just being a brat now, so I'll stop. *sigh* We'll put the gates up, and maybe that alone will do a lot to refocus DS1.

On the car nap, our drive home is long so that's one bad thing about that place. He falls asleep and that wouldn't be a problem if he ate decently. But he gets really upset when we wake him up and then he won't eat. So it's a big problem. We're hoping if he gets a nap on the weekend, that will save us for a couple of days. My fighting to keep him awake while I drive home is not real safe and I just can't keep him awake sometimes even when I try.

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