I think the stress of this one is going to be the one that does me in.....

[buddy]

I can't sleep and I am hoping my brain is making a bigger deal out of this than it will be but I had an unpleasant experience at the rehab center with the Occupational Therapist (OT) today. She came to me after and showed me a list of about 20 aggressive/inappropriate behaviors, with pictures by them, that htey had spent the session developing. She had him sign a "contract" that he woudl not do any of those behaviors even to me before or after therapy and if he did then he is suspended from the center...Occupational Therapist (OT) and speech for a WEEK. She presents it to me in the waiting room on the way out and tells me the plan. It is so bad on so many levels I didn't know where to start. I tried to explain that a plan like this is too overwhelming and will increase his stress. that suspension from school has been tried for ten full years and if a plan like this were to ever work then it would have by now. I tried to explain that I am fine with a plan but it needed to be an appropriate plan. She got defensive, said she was a professional (uggg how condescending...so I said well I am and OLDER professional AND I am his mom) and then she said well our clinic supervisor said we had to do it. I said well then we need a meeting. I feel so let down.


This kind of thing always backfires and his behaviors increase due to the stress. I have switched my whole life to pick him up at school because he goes to therapy after and so I get a tiny bit of gas money if he goes to therapy. WIthout that I am down another 200 dollars a month since he can't come home on the bus right now due to behavior concerns. If he is gone week after week, which WILL happen, then I will be paying for all of that too.

The worst is that his schedule MUST be consistent. He needs it to be or he falls apart and now everyone suffers in every setting.


I tried to reason but she was just rude and I kept thinking, here I go again. I thought I trusted you....this is a REHAB center where they specialize in BRAIN INJURY!!!!! I am beside myself. I wrote an email to his psychologist there and asked for advice. I am just sick over it and can't sleep. It feels to familiar. I couldn't eat but feel nauseated and know I should eat. I got Mc. D with Q and could only get a tiny bit down. ICK I dont want to go through this again.

 

[Malika]

So sorry to hear this and I understand your reaction of fear and stress. I think what you have to do - easier said than done - is to try to keep a sense of optimism and calm about this and make an appointment to speak to the clinic supervisor, where you set out coherently and calmly all the good sense behind why this idea is not a good one and will not work. Try to keep the sense that they are trying to help, but are misguided, rather than trying to obstruct you deliberately. Yes, very easy for me to see it like that because I am not emotionally involved... Deep breath, cup of cocoa or read a chapter of a novel and then SLEEP... Hugs.

 

[JJJ]

Ugh. Sometimes the "professionals" are a bigger problem than our difficult children.

So they are going to withhold necessary services because he needs them too much?????

I would file complaints up the chain. What an idiodic plan. Punitive measures do not work on a child who is unable to control his actions.

 

[klmno]

I'm sorry you have to deal with someone like that. I agree that a meeting and perhaps complaints are due. That is completely ridiculous to think they can punish this out of him.

 

[Marguerite]

Go to the person who is alleged to have required this.

It's possible that the supervisor SUGGESTED it and the Occupational Therapist (OT) has immediately gone to automatic pilot and IMPLEMENTED it.

So it's time for you to play both ends against the middle. Contact the supervisor (in writing if necessary, to keep a paper trail). Say to the clinic supervisor, "Occupational Therapist (OT) has given me a behaviour plan with no discussion or consultation and claims it is on your direct orders. Can you confirm this? The plan, as presented to me, is as follows: [outline the plan]. As you can imagine, I have considerable experience with my child as to what has been tried in the past and what has failed. I am concerned that this new behavioural requirement is too stringent and also too difficult for difficult child to meet. This has been tried in the past and the result was a rapid deterioration in behaviour especially if therapy was removed as a punishment strategy. It breaks his routine to do this and without his regular routine, it then becomes even more difficult for him to cope with his anxiety and complywith behavioural requirements. I am requesting that this behaviour plan not be implemented until you and I and other interested staff) have had a chance to meet and develop a more workable strategy with realistic and achievable outcomes. I look forward to hearing from you on this so we can begin to work on a joint plan which will help both your staff, and our difficulties at home."

If you phrase it in this way, "I have been told you said to do this, can you confirm if this is correct?" it gives the supervisor the chance to backpedal and drop the Occupational Therapist (OT) in it. It also gives the supervisor the opportunity to see that you are a reasonable, experienced person whose input is necessary to this process.

ALWAYS give them room to backpedal. Your aim is to get what you want for your child. To do this, you have to demonstrate that you are solution-focussed, even while you try to make it clear that you can assure them of what will NOT work.

Marg

 

[buddy]

I will do exactly that! Thanks, I just realized it is "that time" of the month again and this is exactly what happened last month when a bomb was dropped on me at this time, I just felt it too intensely. I wasn't going to post it because it felt like too much but I knew I was feeling too intensely and you guys would be able to help me validate the concerns and deal with it. I am not impulsive so did not send off any letters or phone messages. I wanted time to draft things and make it just that. Even when talking to her I over and over said, I fully agree with you that it is a great idea to have a behavior plan, I am just asking that we meet and talk about it before starting anything. But she really dug her heels in and said this is what we are going to do.

Yeah, I think going to the supervisor and putting it that way is a great idea.

 

[Ktllc]

Excellent letter Marg! Polite, summerize the situation, highlights the isssues and reminds everyone that "Mom" is a also part of the team.
I am glad that despite the emotions you could remain calm and had enough strenght to ive yourself sometime to think about it.
Always come here when need it. No sense of hesitating.
If you can' sleep, at least try to ay down with some music on or a book, a magazine. You need to think about something else for a little while.

 

[LittleDudesMom]

Ditta what JJJ said and great advice on a letter (or at least the words if you choose to do it in person) from Marg!

It's amazing to me that they would withhold services that he needs when he is showing so blatantly that he needs them!

Hopefully talking this out on the board has relieved a little of your stress.

Sharon

 

[pasajes4]

I am so sorry you are going through this.

 

[DammitJanet]

Isnt this tantamount to telling a blind child that they will withhold services because they just arent getting with the program and reading well enough yet?

 

[Bunny]

I have to say that I sort of understand the point of the contract, but I also understand your feelings about it. You have been dealing with this for how long now? You, of all people, should know what will and will not work for your child and if you tell them that this type of plan will only increase his stress, which will increase the behaviors they are hoping to put a stop to then they need to take your experience into account and ask for your input.

You do what I do. I always anticipate the worst, which makes my stress levels go through the roof.

Do what Marge said. Her wording is perfect!

 

[SearchingForRainbows]

Love the way Marg worded that letter! I don't have anything to add to what's already been said. Just want you to know I'm thinking of you, sorry you have to go through this... SFR

 

[StressedM0mma]

Marg worded it perfectly. I am sorry that the Occupational Therapist (OT) person jumped on that. I hate when people that do not know our children try to tell us what to do and what will work "or else" the "experts" Ugh. Sometimes I want to ask them Do you think I have never tried this before? Do they think you just let Q run amok all day everyday. ?

 

[welcometowitsend]

Buddy - Marg did word it so well and you did very well in your initial meeting with the Occupational Therapist (OT) as well. I can't imagine how nervous and frustrated you must be knowing the potential consequences and reactions to this 'plan'.

Just offering my support and knowing that you can handle this and work with the Occupational Therapist (OT) team in order to get a plan that will work for Q.

Love that you are taking some time to cool off, get your head clear and formulate what you want to say in a proactive way.

 

[susiestar]

As usual, Marg has a brilliant strategy for this. I also suggest bringing the law advocate into this. There may be things she can do to help this that they may not know she is ABLE to do. At the very least, her presence at meetings gives you some authority and a witness so they won't bulldoze you as much.

This is bs. I think you need to insist on a very clear policy that they will give NO future 'plans' or agreements or incentives until AFTER you have approved of them - and that until they speak with you they are not allowed to even HINT at these things with Q. This is as dumb as the one school that tried to flunk a blind girl because she couldn't do the part of her science labs that required her to use a microscope. These people are supposed to know better than this.

(((((hugs)))))

 

[buddy]

Sometimes I want to ask them Do you think I have never tried this before?

I very nicely did say essentially just that. I tried to explain (mind you, we were in the waiting room when she came up to me so Q was standing there walking around, I had to be very careful what I said because I dont contradict people in front of him so when he was out of ear shot I softly talked to her....) that this kind of plan has been tried year after year. She said well he is older now... .I thought, wow you are really not listening to me, he is not older than the last time this was tried....well he is three months older I guess.... since it was last tried at his middle school and we all know how that ended. At his current school he has asked them like fifteen times if he is going to be suspended. They finally told him he did not need to worry about that. They told him the only time someone in the school gets suspended is when someone gets really hurt. He told them that makes his heart feel better. Can you imagine? I swear these people think I am just making an excuse. This school has been analyzing every single outburst or issue and not once have they felt that a bigger consequence would make a difference. They said they know with him that every day has to be a new day, that is how he is wired. They are right about that. Right now, I keep him in so he can't go out to play with the other kids. I wish that would change the behavior. If it would then things would be improving. I still have to do it just to avoid a possible situation, right now there is no other way. But if this kind of method would work for changing the behavior then all the times he says he is going to earn going out by never hitting again, or never swearing, (and he really means it when he is making those promises), then it would be a done deal. How much easier would life be if it worked. And I would the first one forcing him to sign a contract like that if it worked.

I see the point of it too Bunny, heck, even Q sees the point of it. He is sincere is saying he will follow it too. When his neurological system is regulated, he follows rules and doesn't blurt, gets work done, cooperates, isn't oppositional, and will agree to anything because it is easy for him in that state. (anyone have a kid who uses the incredible five point scale or a similar type of plan? when he is at a 2 "ready" state or what used to be for him "green" that is when he can do well). When he is at a 1 (under responsive and then is pushed) or a 3,4,5 which progressively is revved up, that is when he needs help getting back to a 2. At those times he is unable to access parts of his brain and/or parts of his brain are literally firing extra electricity into the emotional areas of his brain. It is documented on eeg's, not just my excuse or anything. Multiple professionals have told me this and I have actually had to adjust my own parenting over the years...still do....because it is natural to first want to say, well then you just can't ahve X or you need to do behaviors 9, 8, and 25 to be able to earn this... I have to be so careful to make sure they are things that he has consistent control over.

It is just such a multi-layer problem...so many factors can influence control over what even the doctors are now calling tics. (medications, seizures, internal state/mood/hunger/fatigue/temp, how he perceives things socially, his ability to communicate/understanding and expressing himself/sensory issues etc.). They also are saying may have developed panic disorder, I thought panic was part of it...now how to treat it with all of his medication sensitivities and not being able to cooperate with many of the therapies that treat that disorder.



And suspension/consequence contracts can work for a child who can learn that way. It would have worked great for me if I swore or skipped school or whatever, because it would have devastated me to have someone angry with me. I doubt they would use this kind of system for the children who have any other neurological challenge (saying a sound correctly, doing a fine motor task, walking with a better gait, etc...even if the child could do it sometimes and could tell you what the right way to do it is).

I hope I can get a hold of the supervisor and I am going to actually say out loud what I want to say ahead of time to practice, then during the call I will be keeping my computer open with the summary I have from here and my own thoughts. I have had to deal with this stuff for so long I can be pretty tactful but inside and with you guys I can let it all hang out! I just have to be careful that my "ptsd" type of issues from this year do not take over and I do not uncharacteristically blow! (remember the poor jogger who crossed my path a month ago! That was so NOT me, but it really makes me know what Q must feel sometimes, I just lost it when he was so awful to us...good thing he didn't have a gun or anything--I do live in the big city after all, LOL)

 

[Tiapet]

You can do this Buddy, I know you can!

 

[lovelyboy]

Sorry Buddy....didnt have time to read all of the post!
Just wanted to let you know that I fully agree with you and Marg plan sounds great!
Lol....if she was one of my students she would have been given less than 50 percent!!!!!
The idea of showing pictures of aggression is a nice idea....not saying a good one....but nicish.....I would also make a poster with desired behaviour....With our kids they might know what is inappropriate behaviour.....but doesnt have the abbility to choose more desired behaviour....
Then....not punishing the inappropriate behaviour, but rewarding positive behaviour....little goals, calculated over the week to a final score.....then give him something special to do, maybe a faviourite activity AT Occupational Therapist (OT)....that is still part of the Occupational Therapist (OT) goals.....he cna choose at the end of every Occupational Therapist (OT) session......If he didnt achieve the goal for the week....NO punishment....just apsence of reward.....no big deal....discuss and try next week.
Isnt it AGAINST the law to withhold medical services.....think she might just be reported for misconduct if she implement her untherapeutic plan!
Buddy relax.....you or Q wasnt in the wrong! She needs to be worried! She if very close of causing harm to her pt and she could seriously loose her job, if you ask me!!!!!! Dont think you must worry to much.....she made a stupid mistake, dont realize it, because she is inexperienced! She will remember this lesson and hopefully learn from it!
Hugs

 

[TeDo]

Sorry I'm so late to this. My internet (and cable and phone) went out and we just got it back on.

Buddy, I really hope you do go to the supervisor. If the super agrees it was their idea and want it followed, go immediately to meet with the director. They are actually threatening to remove services if he's not nice to you. UGH!! Do they realize that his ABI isn't his ONLY issue, that there is more going on and that the many things combined are what makes his behavior the way it is?? Sounds like the Occupational Therapist (OT) (and/or super) is trying to be an ABA (and a bad one at that). You should ask to see their ABA certification or their PhD in psychology or their MD in Psychiatry or Neurology.

I can totally understand why this is doing the flashback thing for you. How dare a service agency withhold needed therapies for his behavior AT HOME. That is insane!!! Now you have me fuming.


{{{HUGS}}} sweetie.

 

[Marguerite]

The important thing to focus on here, is teamwork, and that the parent is a vital part of the team. Also that your goal is a positive outcome and improvement in conditions for everybody. A punitive approach will not work - not for Q, not for the Occupational Therapist (OT), not for you, not for the supervisor.

It does sound to me that the Occupational Therapist (OT) will NOT lose her job over this because this is probably endorsed by the director, at some level. It can always be construed that the Occupational Therapist (OT) is just trying to resolve a serious behavioural concern which surely you would be grateful to have removed. In other words, her heart's in the right place.

Then there is the more sinister aspect - "if we can't fix this kid's behaviour problems, we can't work with him or his mother." It's a way of ensuring their statistics reflect a higher success rate in therapeutic outcomes. Gewt rid of the more challenging cases so our stats can look good. You'll find a lot of health professionals work this way - it's a kind of triage and is surely not legal or acceptable ethically, but it can be disguised in so many ways, it is difficult to police it. Again, the Occupational Therapist (OT) would be able to justify her plan sufficiently to not only keep her job, but be congratulated for going beyond the scope of her job to try to get a positive improvement in the child's environment.

So what do you do? It sounds to me, Buddy, that you're already doing a lot of the right things. It is really important to keep in the front of your mind when talking to these people, "How can we work together to support one another, to get a better outcome for all concerned?" This makes the assumption, hard for them to refute, that your input is not only essential, it is desirable. It also implies fairly clearly that your input is unavoidable, that you are not going away and you are going to have your say on this whether they want it or not, so they may as well take you on board.

If they persist in being obstructive about involving you, watch for the pre-meeting meetings, where you turn up to have your input only to find that they present you with a list that has already been drawn up, and expect you to embrace it warmly. If this happens, be kind to them because they know not with whom they are dealing! Simply say, "It is gratifying to see just how much you care about my child. However, I grieve to see such hard work being misdirected because you did not get the benefit of my considerable experience with this particular child. While I respect your professionalism and expertise in your field, I am a generalist who has had to learn to think laterally and respond immediately. I can be an asset to you in this, and help you save a lot of time and effort."

The pre-meeting meeting is a common thing. I've attended many meetings which were pre-determined by a previous very exclusive little group getting their heads together and their stories straight, in the half hour before I arrived. Observe carefully, look for the little glances, the half-said comments "We talked about this already just this morning" is a dead giveaway). Merely take mental notes and if you feel necessary to call them on it, do it in writing after your main meeting and only if you feel you need to use leverage to require changes to their policy. Always keep your correspondence friendly and helpful. There are ways of being firm and insistent but still friendly. It also makes it harder for them to get upset with you, officially, because it makes them look like the troublemakers.

If you can do this, if you can keep it up, you often can win through. Simply because - "when rape is inevitable, lie down and enjoy it" applies here to the staff. When they see that they will have a lot more trouble caused by you if they ignore you, they usually take the line of least resistance and give way to at least listen to your concerns. And who knows? They may even take them on board.

If you still find extreme stubbornness and a refusal to even listen or to meet with you ("I have every confidence in the professional expertise of my staff; you've been working so hard with your child that you risk losing perspective; it's time for you to rest and let the professionals handle it") then analyse the situation to determine where else pressure is being applied to the service. Sometimes all it takes is one very strong-willed individual on a crusade to change the world, one difficult child at a time. Or you get the professionals who go into health-based work not to help people, but to eradicate the very thing that makes them uneasy. If you've got one of those and they're right at the top, then you can never succeed. But if they're not right at the top, you can find the chink in the system sufficient to insert your metaphorical oyster knife, and prise it wide open, enough to let you in too.

Buddy, you're already on the right (war)path. Carry on! Tally ho!

Marg