Like your thoughts on these observations....

[Hanging-On]

I've been making some observations regarding difficult child. I'd like some of your thoughts on these please. Especially from you all who are outside the "system" I'm in right now. For 2 months my only human contacts have been with his "providers", and I feel very much like I'm being manipulated into their web. I have no outside resources except from them, or one of 'their partner resources'. And since they have encircled around me, I've become more confused and less in control. Today I woke up knowing that I have to stop this spiral, and get us out of their control. I'm not going to state my thoughts on these observations just yet, I want to see if you see what I do.

Providers mean: BMS (behavior management service), Therapists, CSS (community support service). BMS has him during the week while school is out, Therapists and CSS are in-home providers.




Observations:

During the week, when difficult child goes to the providers all day, and then therapists come to the house at night, these are my observations:

During the week when difficult child is with them all day, I have a crisis at night 90% of the time. (either calling 911, or his provider and me dealing with it). He's completely out of control, majority of time swinging from violence to emotional breakdown crying. Like a toddler who's beyond exhausted, and has that squealy /whiny crying until they just pass out.

During the week when difficult child comes home, and I unpack his bags, I have found not only his lunch uneaten but his medications. So they're not giving him food at all or food I haven't sent with him and approved and they haven't given him his medications. So his chemistry is completely out of whack when I pick him up.

When I ask him 'what did you do today', he ALWAYS puts his hand and fingers over his eyes by his temples and presses down hard and says either 'I don't know, or I don't remember'. If I press him, he then explodes.

If I talk to him, and ask that he looks at me he ALWAYS says 'I hate looking at people, it hurts'. But then other times, when I say nothing he will make eye contact and there's no pain response or symptom.

Most of the fights regarding ‘buying him something' is triggered because some provider got him to do something for them by telling him I would buy him something AND I KNOW NOTHING ABOUT THIS. So I'm ambushed and setup to look like a liar.

At night during the week when in-home providers come, they are always commenting on the fact that difficult child is NOT doing his routine or on schedule. (by the way, this is why THEY COME TO THE HOUSE TO SET-UP AND GET HIM TO DO THIS, LIKE AT THE Residential Treatment Center (RTC)............NOT ME. Then once it's in place and he's following it, I take over. So difficult child has ALOT of pressure on him to do all of this after being with other providers all day. So he's being directed to perform about 13 hours M-F. Although his day with them is doing fun stuff, it's pretty much also non-stop with no time to just gel.

At night during the week when they ONLY do parent/family strategies (like token economy), instead of pressing the routine/schedule he has a better night.




One the weekends when we have NO providers in our life:

On the weekends if he has an emotional crying fit on the floor, he falls asleep right where he is for a couple of hours after the fit. IE: yesterday and today around 11:30am this is exactly what happened.

On the weekends I make sure his primary food is protein (largest amount protein, then greens, and then small amounts of carbs). When he's with me and eats this way and takes his medications, our weekends are almost crisis free. Not perfect, but he's rational and can listen and can be cooperative. (dosn't mean he's doing his chores, and his routine, but pretty much no 911 crisis). Unlike weekdays when he's completely ODD, irratoinal, and in crisis majority of time.

On weekends I live by the basket approach, or pick your battles approach. Although he needs to be and should be on strict routine (like at the Residential Treatment Center (RTC)), I don't push it into a fight although I DO NEED him to help with the chores becuase it's just to much for a single working mom to do. Especially since he just throws his stuff on the floor walking in the door, and he's constantly getting into things and not putting them back....so now I have 10 times more to clean and pick up..... I would rather have peace in the house, so I'm doing everything right now.

When he's with me I DO NOT PROMISE TO BUY HIM ANYTHING!!!!! PERIOD!! He has to earn his privledges. If he doesn't, then he doesn't get what he wants. AND, I have a NO NAGGING RULE! PERIOD! If you nag me over and over about something, you will NEVER EVER GET IT. I'm seeing meltdowns and tamtrums regarding these rules from me, because weekday providers say anything to them to get him to comply, to make THEIR job and THEIR day with him easier....no matter that it is causing harm to his success and to our family success.


I'm sure there's more, but I just can't think of them right now. So what comes to mind for you when reading these things. Thanks.

 

[JJJ]

Can you get to wherever he is during the day to administer the medications and feed him lunch yourself? That is beyond unacceptable that they can't get those two basics straight.

I'm shocked that you are being allowed to send daily medications with him. They should have a nurse or other point person in charge of all medications and you should have to hand deliver a supply of the medications to her.

I can't remember how old your son is...

 

[Hanging-On]

He's 11 yrs old.

 

[whatamess]

I've been making some observations regarding difficult child. I'd like some of your thoughts on these please. Especially from you all who are outside the "system" I'm in right now. For 2 months my only human contacts have been with his "providers", and I feel very much like I'm being manipulated into their web. I have no outside resources except from them, or one of 'their partner resources'. And since they have encircled around me, I've become more confused and less in control. Today I woke up knowing that I have to stop this spiral, and get us out of their control. I'm not going to state my thoughts on these observations just yet, I want to see if you see what I do.I do know what it's like to have only paid people in my life. I relied on 'experts' to tell me how to parent when they really had no clue themselves.

Providers mean: BMS (behavior management service), Therapists, CSS (community support service). BMS has him during the week while school is out, Therapists and CSS are in-home providers.




Observations:

During the week, when difficult child goes to the providers all day, and then therapists come to the house at night, these are my observations:

During the week when difficult child is with them all day, I have a crisis at night 90% of the time. (either calling 911, or his provider and me dealing with it). He's completely out of control, majority of time swinging from violence to emotional breakdown crying. Like a toddler who's beyond exhausted, and has that squealy /whiny crying until they just pass out. Well, he probably is exhausted. When my son started back to school from being homeschooled and had a lot of people and demands placed on him, his safe place to let it all out was home.

During the week when difficult child comes home, and I unpack his bags, I have found not only his lunch uneaten but his medications. So they're not giving him food at all or food I haven't sent with him and approved and they haven't given him his medications. So his chemistry is completely out of whack when I pick him up.I would ask his providers about this. Perhaps he's refusing to eat?

When I ask him 'what did you do today', he ALWAYS puts his hand and fingers over his eyes by his temples and presses down hard and says either 'I don't know, or I don't remember'. If I press him, he then explodes.My son has this issue as well. He doesn't want to play 20 questions, so I try to have the staff workingn with him fill out a notebook to tell me about his day.

If I talk to him, and ask that he looks at me he ALWAYS says 'I hate looking at people, it hurts'. But then other times, when I say nothing he will make eye contact and there's no pain response or symptom.

Most of the fights regarding ‘buying him something' is triggered because some provider got him to do something for them by telling him I would buy him something AND I KNOW NOTHING ABOUT THIS. So I'm ambushed and setup to look like a liar.Perhaps he's asking them for an item and they are responding "you'll have to ask your mom about that" and he takes it to mean you will buy it. Talk to them about it.

At night during the week when in-home providers come, they are always commenting on the fact that difficult child is NOT doing his routine or on schedule. (by the way, this is why THEY COME TO THE HOUSE TO SET-UP AND GET HIM TO DO THIS, LIKE AT THE Residential Treatment Center (RTC)............NOT ME. Then once it's in place and he's following it, I take over. So difficult child has ALOT of pressure on him to do all of this after being with other providers all day. So he's being directed to perform about 13 hours M-F. Although his day with them is doing fun stuff, it's pretty much also non-stop with no time to just gel.

At night during the week when they ONLY do parent/family strategies (like token economy), instead of pressing the routine/schedule he has a better night.




One the weekends when we have NO providers in our life:

On the weekends if he has an emotional crying fit on the floor, he falls asleep right where he is for a couple of hours after the fit. IE: yesterday and today around 11:30am this is exactly what happened.

On the weekends I make sure his primary food is protein (largest amount protein, then greens, and then small amounts of carbs). When he's with me and eats this way and takes his medications, our weekends are almost crisis free. Not perfect, but he's rational and can listen and can be cooperative. (dosn't mean he's doing his chores, and his routine, but pretty much no 911 crisis). Unlike weekdays when he's completely ODD, irratoinal, and in crisis majority of time. Well, it sounds like with less demands there is less crisis. If the providers are placing demands on him, he is bound to be in crisis more often. If you asked the providers to come to hang out and place no demands, he'd probably be crisis-free then too.

On weekends I live by the basket approach, or pick your battles approach. Although he needs to be and should be on strict routine (like at the Residential Treatment Center (RTC)), I don't push it into a fight although I DO NEED him to help with the chores becuase it's just to much for a single working mom to do. Especially since he just throws his stuff on the floor walking in the door, and he's constantly getting into things and not putting them back....so now I have 10 times more to clean and pick up..... I would rather have peace in the house, so I'm doing everything right now.It's hard. You want the providers to help your son get his stuff done, but you don't want him in crisis. You want him to do his stuff when it's just you, but you don't want to push it to meltdown mode. You want what isn't possible right now ---> your son to do what he's supposed to do without major help or a crisis.

When he's with me I DO NOT PROMISE TO BUY HIM ANYTHING!!!!! PERIOD!! He has to earn his privledges. If he doesn't, then he doesn't get what he wants. AND, I have a NO NAGGING RULE! PERIOD! If you nag me over and over about something, you will NEVER EVER GET IT. I'm seeing meltdowns and tamtrums regarding these rules from me, because weekday providers say anything to them to get him to comply, to make THEIR job and THEIR day with him easier....no matter that it is causing harm to his success and to our family success.


I'm sure there's more, but I just can't think of them right now. So what comes to mind for you when reading these things. Thanks.

I think if you want less crisis, then you can ease up on the demands placed on your difficult child by providers, but you'll have to expect fewer things getting done.

 

[Hanging-On]

Providers know all about the lunch and medications issues. I have pushed them on it that I have certain providers not allowed to work with him.

I have actually been there when a provider has told him I'd buy him something if he did what they wanted, and I have told them in no-uncertain terms that this is completely unacceptable. And that THEY would have to go buy the very expensive thing themselves, and that they can NEVER say that again. And I have had them repremanded at work for doing it.

 

[Farmwife]

The first thing that comes to my mind is the fact that they do not have a strict medication policy especially for an 11 year old difficult child. That is a huge red flag for me. As mental health providers you would like to think they would be aware of what medications your difficult child is on and be responsible for them while your difficult child is in their care. That in itself sets such an unprofessional precedent that my opinions on the rest are a bit biased.

Lunch is such a critical thing when it comes to routines and difficult child's moods. In my case difficult child is 16 and in a regular school so it is his problem. In your case your difficult child is in a specialized program. Once again you would think someone would notice. I would wonder if that goes unchecked how they can offer higher level care at all? Unless they provide alternative meals it is an issue. If their job is to help difficult child get on track meals are a vital part of that. If it is an issue that is ongoing they should let the parent know.

Overlooking those two basic needs would be worrisome to me especially with "experts".

I would ask to meet with the teacher or director to ask questions. Don't go in with any agenda in mind, just seem genuinely curious. Then if you can ask to observe difficult child in an unobtrusive way do it. If you approach as a concerned parent who wants to help them they should be more than nice about it. If they get touchy about you observing or defensive about their methods and your questions all the while expecting you to just sit back and trust the process I would consider it another red flag. They should have nothing to hide and be there to help facilitate you and difficult child so an active participating parent *should* be a good thing.

While I agree that sometimes difficult child's get worse while their routine changes the staff should be able to tie all the services togethor and give you *actual* help rather than glorified daycare and lip service. If they agreed to do certain things they are obligated to provide them. If they are in any way state funded good luck with that. In my experience the state paid networks are often paycheck chasers, gravy trains and wanna be experts who are not much help. Though that can vary I am yet to see it for myself.

Start keeping a log of events and observations. Those are so vital if things begin to get hazy. That way you have a record over time if things continue to be fishy. If not it can at least lend you some insight into your difficult child. I keep mood and behavior logs on my difficult child just for home time and it is amazing how much I learned about him by looking back over time. The same may help you regardless of if this works out well or not with your services.

If things are not up to snuff you will need documentation. Again, in my experience rocking the boat when professionals are not performing to task ruffles their tail feathers. If they take it personally rather than a reminder or a suggestion they can really make your life difficult. Many of these people tend to have long term working realtionships so when some "whiney" parent has a legitimate gripe it can be hard to get heard because they may stand united as an obstacle for you.

Ask nicely at first and give them a chance to clear things up. If that fails most providers public and private have rights and responsibilities for clients as well as grievance procedures. People rarely pursue it but if you are between a rock and a hard place it may be all you have. Regardless of if they are self pay, insurance or state aide paid they are obligated to provide the services you contracted with them for. You don't need to accept cut corners.

 

[susiestar]

I am royally ****** on your and your difficult child's behalf!!!!! Regardless of whether he does ANYTHING else they want, they should be making eating the lunch you provide and taking his medications the TOP priority for his day. WHAT would happen if he went to school or this place and YOU hadn't given him his medications? If your area is anything like some of the places the rest of us live in, you would be facing a LOT of interference from CPS for not providing medically needed medications! HOW can this place get away with this??? You need to speak to the TOP person about this. First, for a week make a list of everything you pack for him and the medications you put in the bag. When he comes home make a list of whatever is in his lunch bag and medication box. Then go to the TOP person at the BMS, not in charge of the room or area, but the person who runs EVERYTHING and ask WHY.

Get an appointment with his doctor. Explain that you need a letter AND a note written on a prescription pad sayng that difficult child has food problems and MUST be fed the food you provide for him every day. It needs to say that his food must be very high in protein and low in carbs to meet his needs and that mother will provide daily meals that must be eaten. It also needs to outline what medications need to be given at what times. Some places won't honor a letter but will follow a "prescription", others are the opposite. Get both to cover the bases. Once they have these documents if they are NOT giving him his medications or his lunch they are then violating the advice of a medical professional and you can address this legally if need be. MOST places will NOT go against the advice of a doctor. Do they get any federal funding for their lunches, or take the kids to a local school for the free lunch program? If they do, and difficult child gets the federally provided meal at this place, the place (BMS or local school) can lose ALL FEDERAL FUNDS for this lunch place. on the other hand, if they use free lunch funds they often CAN give the free lunch with-o consequence because it is "approved" and NO ONE will stand up and say it is a cruddy lunch from almost any standpoint.

As for "Mommy will buy you X if you do Y", work with difficult child to tell them that they are LYING! You need to drill into him that no matter WHAT they say, if they are promising that MOMMY will do something they are lying. If Mommy says she will do something it is the truth, but these people are not mommy and do not know if she can afford it. Aspies are pretty good with rules that they figure out. Sit down with difficult child and ask him how many times that someone at school has promised to have Mommy buy something that it has come true? Ask him how many times has he come home and gotten upset because BMS has "promised" that Mommy will buy something and he has gotten upset because Mommy hasn't bought it. Let him know that you have NEVER told them to promise him something and that you are FURIOUS because they are LYING to him. difficult child knows that lying is bad and that he is not allowed to do it. (Whether he does it or not isn't the point here, lol.) So if Mommy promises something and always does it, and if BMS promises that Mommy will buy something and it never happens, and if saying something that isn't true is a lie, then BMS is LYING to him. Whether he looks at them and tells them they are lying or not is up to you and him. I am very sure my difficult child would look them in the face and tell them that they are liars. Of course my difficult child would never trust a word out of their mouths, but that might not be a bad thing in this situation, in my opinion. I would tell my son to NEVER fall for their lies again. That he needs to do what they tell him to with-o the promises, but that when they do make promises it is a LIE. I would decline to provide consequences at home for things he refused to do after they lied to him. At some point they will ask you to punish him at home for not doing what they want at school. Just say no because it isn't worth the effort or the uproar.


Is it worth more to have a fairly peaceful home or to have these people forcing your son into a meltdown? It is YOUR son and YOUR home. It is also YOUR easy child and YOUR person that have to suffer through the meltdowns along with difficult child. Tell the in home people that the structure is not working and that it is unreasonable. Your home is NOT an Residential Treatment Center (RTC) and there is NO WAY to provide Residential Treatment Center (RTC) structure in a private home. It just is not possible. Your difficult child needs some time in his day with-o demands. We ALL do. Regardless of his behavior, difficult child does NOT deserve to have demands for performance put on him during every waking hour. It will not EVER EVER EVER EVER EVER EVER work, regardless of how many people come in to force it upon him. As SOON as they are gone he is going to revert from any progress they make. It is NOT difficult child's fault or your fault. It just is. Either tell them to cut it out and approach him differently or tell them to go away. If you tell them to leave they likely won't offer services in the future, but that may or may not be a bad thing. It is a judgment call. You can ask for a meeting and tell them that this approach is not working and in fact is making things worse. Ask them to find another way, one that is less likely to provoke rages and meltdowns in an exhausted child, to help him.

Stop asking him what he did today. There are very few kids who will answer that. My youngest can SOMETIMES come up with something they did in class, if it was very interesting. He has aspie tendencies but is a total easy child and is teh top student in his class in every subject. Your difficult child is likely to be highly intelligent. If he is bored he probably won't remember. If he is having meltdowns he is going to forget things. MANY of our kids who have meltdowns often have a hard time remembering what they did during a meltdown with-o prodding. Wiz would know he had a rage or meltdown, but everything that happened during the event was a blur for him. I don't know why. I doubted it for a LONG time, but it wasn't a cop-out. Wiz has a phenomenal memory. He gets it from Gpa and I. We have always called it a "garbage can memory" because all sorts of bits of idiotic minutiae and trivia get tossed in there and never leave, along with almost everything that made an impact on us. We still forget things, don't get me wrong, but we have all sorts of irritating stupidity stuck in there whether we like it or not. But even with this memory Wiz still cannot remember ANY meltdown or rage he has ever had, not with any clarity. I don't know why, but I know it is true. Your difficult child may be this way. Of course I don't know for sure, but it is a possibility.

With all the demands placed on your difficult child during his day, your question is just one more demand and likely he is overwhelmed already. Let him know that you would LOVE to hear about anything that was exciting in a good or upsetting way, but you understand if he doesn't want to talk. In the long run it will likely make him open up more to you. The more you pester him to tell you about his day the more he will clam up. Pester is likely how HE sees your question, NOT how you are meaning it or actually saying it. After a while maybe you could ask him to remember 2 things about his day and you will tell him 2 things about yours. Give the issue a couple of weeks rest and then in a calm moment suggest it. See what he thinks. If he is not willing, maybe start telling him 2 interesting things about your day without asking anything about his. Give it a few weeks and then ask again if he would try to remember 2 things about his day to tell you. Maybe sit down with him over a snack to exchange interesting things.

Try to remember that it is your home and your child, not the experts. Put yourself in difficult child's shoes, would YOU be likely to be cooperative if you were treated the way these people are treating your son? Take control and if things are not working let the "experts" know that you expect them to come up with a new approach that will work with-o all the meltdowns that are now occurring. difficult child doesn't like the meltdowns either, and if these people are doing what it sounds like, they are more likely to PROVOKE a meltdown than to help difficult child do ANYTHING positive.

(((((hugs)))))