repost from SpEd - Need advice - goals being ignored

[sunxstone]

Hello,
Our child has been diagnosed with Asperger's, BiPolar, ODD, ADHD, Encopresis, and now they are looking into Conduct Disorder. Our main issue is the school (day treatment facility) has been reporting that he's doing just fine there, and even though he has yet to meet his goals, they keep talking about sending him to mainstream school in the next few months. One of the main issues we have been having is that his behavior at home has become much worse. He's been making threats, hurting the animals, stealing, as well as destroying property. For home services we have WRAP, as well as TBS working with us and him. Both have been saying that he is in need of residential care, but the school is having no part of it. After the last threat he made towards me, I had a sit down with him and explained that this behavior can not continue. We had spoken with the school and that if his home behavior did not improve, he would be going to residential. He then spoke with his school's therapist the next day who now is telling him & us that there is no way he would be going residential because he's doing "so well" in school.
At the moment I'm very frustrated & working on having documents ready for our meeting at the school tomorrow, but really could use some advice, or ideas on how to handle this. One of the things I'm going to bring up is with the threats daily on my life getting ignored by the school, when everyone else takes them serious, including my family whom has very little to do with him these days. That I'm letting my family know if he does end up hurting myself or him mother, that I do consider them dragging their feet makes them responsible.
Any help and advice is most welcome!

Chris Honey

 

[keista]

I'm no expert at all in this, but I'm awake so I'll offer the only thing I know I can.

If the goals are not being met, I don't see how they can seriously consider mainstreaming him. You don't have to sign anything at the meeting, you can refuse to sign it and request a folow up meeting after you've had time to digest whatever information they give you.

I don't understand how or why the school system would have a say in whether he's put in residential treatment, or not.

Can you get someone from any of your services to join you for the meeting or do you have an advocate already. I find the school 'team' is always more compliant to parental concerns when an outside 'pro' is at the meeting.

Sorry, not much help, but I'll be sending positive thoughts yur way tomorrow.

 

[Chris Honey]

Currently he's in a day treatment facility with an IEP.

We've called P.E.R.T. several times when he's made threats, and they have talked to him about the threats. Since he manages to calm down, and didn't try to cause physical harm they do nothing but give hime warnings. The school has had to call them as well in the past, and that time they actually did take him in for a 72 watch. By the time we got to the hospital to drop off clothes he had calmed down and they released him. We're stuck in a situation where we can't send him out for more help due to the contract we signed with the day treatment facility, but they don't want to work on specific behavior issues that are huge red flags for us as well as TBS. I have now started to give him chores for each threat, and had the therapist try to tell me that was wrong. Even though this was advice given to me by our WRAP team. Instead she was telling me I should take away something of his choosing for several days. The bad part was I was just told by his therapist a few weeks prior that taking things away for days doesn't sink in. Very frustrating!

I've been reading online some of the solutions other parents have come up when the schools are not matching the goals of the home. Documentation is the key from what I'm gathering, but I really would prefer if they would just get on the same page as everyone else, and work with us. I'd rather have our child stay in our home, and work on these behavior issues, but if the school doesn't care about the home situation at all, then he needs a higher form of treatment.
​

 

[keista]

Sounds like your therapist and your WARP team need to get on the same page too.

Well, if the day treatment place mainstreams him, what happens to the contract? Since he's no longer directly under his care, then I would think the contract was 'dismissed' and then you could seek whatever treatment you wanted. Possible?

 

[Chris Honey]

As soon as he would be sent mainstream, the contract would be void. The issue at hand is more of the timeline. His temper and threats keep on increasing each day, and August is when they plan on making the change to mainstream. So if we wait till then, who knows how much damage control we will have then, and how much will be able to be reversed. We also are worred about our youngest child who will arrive in a few weeks for the summer. He has hurt her many times in the past, and is one of the main reasons she's not living with us now.

 

[keista]

Sorry I can't be more help right now.

I'm sure the 'veterans' with similar issues/kids to your's will stop by in the morning. I know that won't help you prep for your meeting, but I'm sure it will help in general.

Best of luck tomorrow - I'm in the East and gotta get some sleep.

 

[Chris Honey]

Thanks Keista!

Knowing there are other parents out there who struggle as well, and still care to try to help us out is more than I could ask for to help keep my spirits up. I'm working on my notes right now, and really just trying to get ready for the meeting.

 

[ready2run]

so the school isn't doing what you want them to. can't you just pull him out and send him to whatever treatments you want? you are the parent. they are not. you are very brave. if it came down to having to chose between difficult child and easy child, i would not make the same choice you have. you must be a very dedicated parent.

 

[seriously]

Did you see my reply under Special Education?

When we were in a somewhat similar position up north difficult child 1 was being regularly hospitalized and we finally refused to bring him back home because he was a danger to everyone in the house.

That created a crisis that all the powers that be could no longer ignore. They threatened us with child abandonment but, as others will tell you, that was an empty threat. When we said we knew we could not keep him and his younger siblings safe and that was the reason we would not bring him home and they were welcome to charge us and we'd see them in court - that threat magically went away.

Instead there was a meeting with about 20+ people all representing the various agencies/organizations involved with our son's care. School, foster care, county mental health, psychiatric hospital. And they decided to place him in local foster care. Frankly, they did not believe us when we said he was unsafe at home because he was always fine in the hospital. when he had failed 2 foster placements for threatening staff with a knife or trying to run other foster children down with his power wheelchair - then they believed us. At that point he was placed in a therapeutic 1:1 foster home with an NPS school placement. This placement was 600 miles away but it was the only one in the entire state that would agree to take him.

Perhaps something like that meeting should take place about your child. I do NOT understand why he is still in your home instead of therapeutic foster care or residential treatment.

Does your child qualify for regional center services? If so they should be part of that meeting too.

We have finally gotten more help than ever before because difficult child 2 was charged with assault after throwing a plastic water bottle at me. Really that came about because we had called them repeatedly for help over a period of a couple months. They finally detained him after they had to come to the house and get him out of a locked bathroom where he had holed up with a knife.

That has gotten us extra services through a grant program. But it has not been the panacea that it was promised to be.

I feel for you and hope you are able to get some help quickly.

I'm not sure of what all the acronyms mean that you used in your previous post but I am assuming they are support services in the community. Are any of them through juvenile justice?

 

[sunxstone]

WRAP is another name of for Families Forward, and it's through County Mental Health. We have a child coach who does one on one with difficult child, a WRAP facilitator who runs weekly meetings and difficult child goes to a Leadership Group once a week through their program with kids similiar to himself.

TBS is Therapeutic Behavior Services, instituted by CPS after difficult child's latest (dismissed) account of abuse. There have been four in the last year.

Our TBS supervisor was supposed to accompany us to this meeting today but called this morning to let us know she wouldn't be coming after all, and to reschedule for next week.

We discussed with the therapist about the serious threats difficult child has been making against our lives, the cruelty to pets and wildlife in and around our home, and our concerns about his sister's safety when she comes to visit for the summer. His sister (the easy child) chose to stay behind with her dad after the divorce because she didn't feel safe with difficult child. We have several plans in place to protect her, but we can't supervise every second.

We discussed our concerns with the following behaviors in the home: threatening our lives, hoarding, stealing, lying, yelling, hurting the animals, constant demands and sense of entitlement ("I hate you! You're ruining my life! You're lucky I don't have a knife right now! Can you take me to Game Stop?")

We discussed the GI's finding that the encopresis and smearing is completely behavioral and what they could do to provide therapy and improvement in that area. Not much, we were told, besides the life skills which they provide in group, which he rarely participates in)

We discussed and figured out that difficult child has a two month span with the bipolar before he peaks and drops again.

We discussed our concerns that we cannot provide 24 hour supervision to keep him and us safe from himself, and that we felt he needs intensive therapy for the encopresis and violence.

She expressed that we don't yet have difficult child on the right cocktail of medications yet, and suggested Abilify for the ADHD which will also help stabilize his mood more.

We talked about a Life Skills group home setting for him instead of residential as it would be a better fit for his needs, which we agreed with, but more than likely we would have to take that step without the school's help because "he's doing fine and improving at school." We'd have to refuse their help and go through CPS or County Mental Health to take that step.

We just lowered the dose of Trileptal about a week ago and we're all ready seeing an increase in his irritability level, so will look into raising that back where it was previously.

She did say we were doing everything we could do. We explained we don't want him out of the home, but we may not have any choice as he refuses to cooperate with us, to try to get along with anyone in the family or care what he's putting us through on a daily basis. He just does not care to try to change his behaviors to make it easier on all of us, himself included.

We're going to call and set up a meeting with all of the services involved (school, WRAP, TBS, possibly County Mental Health) next week so we can have another round table discussion on what's happening with us, with difficult child and with each of their programs. TBS is very concerned about what they are seeing in the home, as they have been here for over 40 hours in home with him, how we are handling things and how he responds. The threats are very concerning and our TBS coach sees it as a very large red flag. He's had over 10 years with working with kids like ours, and he says difficult child is just off the charts.. he's finding himself frustrated some days, and says difficult child just has this disconnect that his actions = consequences, and how his behavior affects others. One of the blessings we're counting is that if this trained professional, who is amazing at his job and is not giving up on difficult child is frustrated and not sure which path to take because none of them are working.. we don't feel so bad.. its *not* us. We're following every example and tip they can give us, and it's just not reaching him. I'm thankful for the services that are provided here, that other people are seeing the situation.. it's where we can go from here. Is a residential placement good for not only us, but for him as well, or will it make it worse?

 

[sunxstone]

Seriously -

We were told difficult child is too high functioning for the Regional Center. None of our services are through juvenile justice as difficult child has a healthy fear and respect for the police still.

We were told, especially with Therapeutic Behavior Services input, that residential is in fact in our court, but that we would have to do it without the school's help as they can only make the call based on his school behavior, which isn't too bad. (it isn't stellar, either, but he has shown improvement *in that area*)

 

[sunxstone]

so the school isn't doing what you want them to. can't you just pull him out and send him to whatever treatments you want? you are the parent. they are not. you are very brave. if it came down to having to chose between difficult child and easy child, i would not make the same choice you have. you must be a very dedicated parent.

It is a very hard decision to make. We love him, we just don't *like* him, which is very hard as a mother to say. but he our son, and we do want what is best for him. We have a good support system in place, but this really is getting over our heads of what we can handle, because nothing we've instituted has had much effect on difficult child's behavior. We aren't giving up on him, but we're feeling like what he needs is exceeding what we can provide for him. We're fighting to keep him home, he's fighting us on wanting to be here. He's making the choice here, but we're not sure he understands that.

 

[seriously]

sunxstone -

Our difficult child 2 was severely impaired on many levels including physically. His psychiatric and behavioral problems only intensified the older he got. We struggled to hold on, to keep him at home.

I was struck by your words -

he refuses to cooperate with us, to try to get along with anyone in the family or care what he's putting us through on a daily basis. He just does not care to try to change his behaviors to make it easier on all of us, himself included.

We felt much the same way - that our son was "refusing" to cooperate; that he "didn't care" about changing his behavior.

It seems really obvious now - the reality for our oldest son - it was not a matter of choice or refusing. He is simply not capable of behaving differently now and I don't think he was then either. No amount of care, intervention, medication, or structure *on our part at home* was capable of changing the nature and expression of his sometimes subtle but incredibly disabling cognitive and emotional problems.

With 10 years of perspective (our son is now 28) I think that we should have moved heaven and earth to get our son into a therapeutic placement much sooner. Not just because of the strain on us - but because he was getting sicker and sicker and needed more help than we could give him at home.

The week of his 18th birthday he "attempted" suicide in our home 5 times. There was no parity then and we had 30 days of inpatient coverage a year. By then we had been through so much with him - for years - that every ER and psychiatric hospital in our region knew him and refused to accept him for longer than a few hours - which was about how long it took for his rapid cycling to drop him back into something approaching normal.

The fact that he was extremely physically fragile and required help with all ADL's made him a risky and expensive patient to care for since other patients could seriously injure or even kill him if they got physically out of control around him. Home was the placement of last resort - and our entire family paid the price.

My honest opinion, based on what you've shared and our experiences, is that this child needs some kind of residential placement and you should make that happen as soon as you can. As you have said, you have done all you can do for him at home - but things are getting worse to the point that you have reason to be concerned about the safety of your other child and yourselves.

I know you love him no matter what. Maybe it's time for your love and care to go to finding a safe, nurturing and appropriate placement where he can get the structured, therapeutic interventions that may help him learn the skills he is going to need if he is ever to live independently.

Peace