intensive home therapy, anyone else tried it?

[paperplate]

ok, so we're starting home therapy. It's pretty intense, but the psychiatric says it's the only way we'll get anywhere. A psychiatric comes to you home almost daily and basically blends in. After a while, we all drop our guard and the psychiatric can see the root of the problem and help us to find a solution. I'm guessing it's going to be a little strange. husband showed up at the psychiatric appointment (never thought he would), anyway, he told the psychiatric about the financial control, the obsessive behaviors etc... psychiatric told him he is Obsessive Compulsive Disorder (OCD) clearly, but she's willing to work with him. It's kinda strange, because I never envisioned him seeing a therapist. psychiatric said I'm overprotective and walking on eggshells etc...duh! Anyway, husband is living at his parents, which the psychiatric said was a good idea and she felt we could get more done that way. If husband agrees to work with her, he can have appointments working with his relationships with the kids. Meanwhile, I'm wondering what it's going to be like having a therapist practically living here, it's a daily thing. I had explained how DS13's behavior changes based one who is with. They didn't feel like 2 days a month was going to help, because anyone can put on a show for that long. With the therapist here daily and basically becoming a family member, they feel true colors will come to light. I hope they're right. Actually, when I showed her some of the hidden videos I'd been recording, she was shocked, she said that's not the kid she sees in her office. Which is WHY I've been recording stuff. I know DS13 well. I love him, yet I see a side to him that can be very cruel. And Autism and Epilepsy is not an excuse for unruly. So we have a lot of work to do. She involved husband, because she said if he's willing to try, everyone will have a better outcome. In the end, even with divorce, we all need to remain decent and nobody needs to snap. This will hopefully make the whole transition smoother. So we'll see how it goes. I for one feel better knowing someone else will be here when times get tough. But I was wondering if anyone else has tried this before? How weird is it having a therapist in the house everyday?

 

[DaisyFace]

Hmmm...

I've never heard of having a psychiatrist basically move in with a family. You'll have to let us know how that goes...

 

[paperplate]

yeah, it's going to be different. Kind of reminds me of nanny 911, LOL. It's considered home based services. If nobody else has heard of it, then we must be total mess over here! But I'm desperate. My fear is that if my DS13 can't get under control (especially with me being a 'single' parent now), he'll wind up a big MESS of an adult! I don't ever want to get one of those phone calls that DS has been arrested for 'such and such', but that's where we are headed. Mainly because he doesn't even understand that the stuff he does isn't 'socially acceptable' behavior. He's been beat up by other peers more times than I count, mainly because of the things he says. And the sad part is, that because he 'looks' completely normal, it's hard for the other kids to grasp that there's anything 'off'. The problem is a LOT of stuff pointed to autism at a young age : Developmental delays, therapy as toddler to get him walking, large head, milk allergies, not understanding facial expressions, speech evaluations etc...but at NO POINT did the peds doctor say 'autism'. He would just send for therapy for coordination, speech evaluation etc...but other than that, I had NO idea what autism really was. I thought it meant 'rainman'. I just got so used to his 'quirks', tapping etc...because he still communicated with me. He was was brilliant. Still is. The math he can do in his head is amazing. He was reading Harry Potter in pre-school. However, since the seizures, only the math stayed. He lost a lot of short term memory and now reading is next to impossible. And nobody ever said that Epilepsy and Autism share a gene mutation and therefore they are common together. The only doctor to figure it all out was a new neurologist wh basically dug through his whole history and found the answer. And it hurt to hear it, mainly because had I known, I would have gotten help a lot sooner. Now I essentially have to learn how to 'parent' him all over again.

 

[llamafarm]

It sounds to me like you are on a good road. Getting help in the home is one of the best ways I think. I am impressed that your area has in home services that spend so much time "in home." Our in home services are very limited. We thought we made a breakthrough when we received home based services that on a good week has an hour at home a week. We are of course, on waitlist for a youth coach and in home assistance, just an aid, not a psychiatric. It will probably be difficult at first, but really I bet it will become a natural part of your family life.
Good luck, I'll be thinking of you.

 

[BusynMember]

I never heard of it either. Autism isn't a mental illness. I hope he understands it and can help.

Autistic kids and adults do have a harder time holding it together. And it's true...they sometimes don't "get it." Is this psychiatrist aware of autistic behavior?

Wishing you luck!

 

[buddy]

I think that's wonderful. Is she an autism professional? That would be my only.concern, she needs a tool bag full od ideas for someone who is brain injured and autistic. If you ever feel she starts leaning toward it's all parenting issues(which of course we can all improve on) be prepared to ask her to work collaboratively with an Autism Spectrum Disorders (ASD) professional. Even nanny 911 did that!

 

[TeDo]

Yea, Buddy and MWM, that is my concern as well. The psychiatric that comes in has to have TONS of experience (successful that is) working with kids on the spectrum. You really need to be cautious. "Regular" interventions don't work with our kids. If the psychiatric has no experience or very little experience working with autistic kids, I wouldn't do that to DS13. Personally, before the psychiatric is allowed to do anything, I would ask 2 questions: 1) How many autistic kids have you worked intensively with? and 2) Have you ever been asked to stop services and why?

I really hope this ends up being a great help but, based on other stories here, therapists that don't have a lot experience can do SO much damage. Praying this is NOT the case for you. I can only imagine what the bill for this type of service will be. LOL

As for the pediatrician not saying anything, DS13 didn't appear "classic" autistic and the doctor probably didn't know or didn't believe that there was a whole spectrum. That is NOT his/her area of expertise. I have the same regrets (my story is similar but worse) but ultimately, it was MY responsibility to follow up with professionals that would know. I didn't back then but I did now and we're doing the best we can and we're getting better every day.

 

[DaisyFace]

I can only imagine what the bill for this type of service will be. LOL

LOL - I wondered that myself!

 

[STRESSEDTOMAX]

Hi Paper - We've had Intensive-In-Home twice - two different agencies - and neither of them were "Intensive". I found it to be a waste of time. They would come in 2-3 days a week and nobody was a psychiatric - are you sure about that? Usually they are someone with a BA degree in psychology or something like that. They would help difficult child with his homework but there was NEVER any therapy. Some of them just came and hung out. Then there was the guy who started threatening difficult child with going to a facility, which was the last straw. I would never do it again...none of them had any experience with autistic kids, as far as I know. Somewhere in your post you said that autism is no excuse for "unruly behavior". in my humble opinion, it may not be an "excuse" but it can most definitely be a "reason".

 

[BusynMember]

TaeDo, was thinking the same thing. That he'll be pointing fingers at "parenting" and trying traditional behavioral methods that don't work.
I'd feel creepy having a psychiatric living with me. He could decide we were "incompetent" and turn us in all because he didn't understand autism. I personally wouldn't want anyone outside of our family to become one of the family. I'd be afraid for one.

Autism that isn't being treated correctly most certainly IS a reason for a child or adult to be unruly. They do not understand the world as we do. A good autism therapist and good interventions help the disabled child to understand the world so he can cope with it. This is NOT willful misbehavior. Sorry, have to strongly disagree. Punishment will not help. He needs to understand the world, people, behavioral norms...almost text book taught. He won't pick it up the "normal" way.

 

[susiestar]

I haven't had this, but HAVE known a couple of families who did. The entire family was observed, then the tdocs (in home and the reg one) worked together to help make changes and see if they helped. The one family got upset because it was their opinion that the entire problem was their child and when the tdocs wanted the rest of the family to help and to stop egging some of the bad behaviors on or to otherwise accept that they had a role in the problems, well, that just wasn't okay and wasn't happening.

The other family was more flexible, didn't get a lot of help AT FIRST, but stuck with it, showed the tdocs, esp the in home, how the traditional parenting stuff really made it worse, they made the therapist handle things when therapist insisted that something be done a certain way, and by working together, esp after the tdocs figured out that their traditional parenting steps were just not viable, well, things got a lot better. You have to be willing to make some mistakes, but that is life, in my opinion whether you admit it or not.

Sure, the in homes may not have a clue. If you get one who is willing to learn, listen and think, it can be better than one who already knows how to deal with your issues.

I don't think they really moved in, but were there several hours a day for maybe four or five days a week. The entire family couldn't hide their patterns for that long, so the tdocs got some clue of what really was going on.

I think given the problems with your husband, the fact that the rules are changing drastically because you are not afraid of what h will do to the kids if/when he explodes well, this is a good thing. Esp given how different he is at his therapist's. It gives the docs a chance to see what is going on and how to help.

You do have to make sure the therapist is literate in autism and kids who are not neurotypical. That makes a HUGE dfference.

 

[paperplate]

Yes, I'm a little worried, mainly because past experience with 'doctors' has told me that they miss a LOT! Like the peds doctor that said he had 'night terrors' and 5 years later that night terror lasted over 15 minutes and the paramedics we called FINALLY said SEIZURE! That's when we got him into neuro, had his first EEG and found out otherwise. Took FIVE YEARS to find that out. Meanwhile, in those 5 years, he was playing full on tackle football and we found out from neuro, bad idea! Seriously, I've about had it with doctors and their 'trial and error' medications etc... But at this point, I'm just desperate to get him help. I know we need someone familiar with Autism Spectrum Disorders (ASD). My issue is, the one facility we had been in touch with (they called daily to check on DS13 after his breakdown on Prozac), they DO have that experience, but that's not who psychiatric referred for the home services. It's some other place with a Children's HOME on the property, that makes me very nervous. My son is NOT leaving this house! So maybe I better call the first place and let them know whats going on. They had plans for a 'sensory diet' etc... They knew all about sensory issues, aversion to sounds and bright lights. I thought that was who she was referring us too. But no. Now I'm just starting to feel like I through my kid under the bus?! The Autism Spectrum Disorders (ASD) place opens at 9am. I'm calling them. They have home-based and any place with a 'group home' makes me very nervous. He'd never survive there. He barely makes it in the junior high and those kids are 'neurotypical, behaved kids'. I fear for him in a place full of unruly kids. He's soooo literal. If your tall, he'll say so, fat, he'll say so, short, he'll say so, etc... He doesn't mean to come off as rude, but he just does. Know what I mean??

 

[BusynMember]

I know only too well what you mean...lol.

A group home would not help a child with autism. Go with your instincts. If you think this psychiatric is behavior based, that's not probably what will help your son or what he will respond to. He needs somebody very familiar with Autism Spectrum Disorders (ASD). Good luck!

 

[susiestar]

They can't put him in a group home with-o your okay. Around here LOTS of the hospitals have group homes and inpatient wards, but they cannot just put people there. Once there, they cannot keep them there with-o consent.

Ask the doctor to refer to the autism people and if he says no, insist on a reason. If he won't see your point of view, don't cancel appts wtih him, but look for a new doctor from the autism group. Be ready to educate the new in home person on autism and if they won't learn? Toss them out and complain to the doctor. NOT saying not to listen to them, but if they flat out insist on not taking an autism approach, you don't wnat or need them.

I know this will be hard after all the years iwth husband, but from now on, if you instincts say no, you say no. You can explain WHY, but if your instincts are screaming, listen to them no matter what anyone else says. The biggest mistakes I have made as a person and parent all happened because I didn't listen to my instincts. Many parents I know say the same thing. Give yourself permission to follow your gut, and don't apologize for it. Not even if it angers husband. If he is abusive over something? Call the cops. You don't need to tolerate that.