difficult child is regressing, cycling, and shutting down

[Steely]

Oh, you guys, please keep me in and Matt in your prayers. All of this moving around with him is taking it's toll, and I am so worried about him.

First the psychiatric hospital, where they lost the paperwork to 2 of his medications, and therefore he went cold turkey off of Paxil and Lamictal. Then to UT, where after 2 weeks of him being there they figured out that they can't keep him when he turns 18. Then to a wilderness program, group 1, for 7 days until he turns 18, and now group 2 for over 18. He had been doing pretty good with all of this change, a bit oppositional, and some periodic Matt issues ~ but now this latest move to group 2 he has totally crumbled. He has regressed into being the Matt of 7 years ago...........and it just makes me so sad for him. He is getting absolutely nothing out of the program at this point because he is cycling so rapidly, and escalating, and irrational, and not able to process things. I don't know what to do. And because it is a wilderness program the dr is a five hour drive. I feel like now I have made another poor decision for him, and now what ~ another program.

He has had too much change for a child like him in too short of a time. In the beginning he wanted to get this help, now he is just fighting it. I feel like everything he was working towards is crumbling, and now he is going to just start fighting everything.

I am so freaking sad right now. I feel like I have followed all of these people's advice on where he needs to be, and how, and where ~ and Matt has taken all of the advice and willingly done what was asked of him in order to get his life back on track ~ but now everything is backfiring ~ and he is done.

This is just a mess, a horrible, jerked up mess.

 

[gcvmom]

It is certainly not your fault nor his that the program you signed him up for CHANGED the rules without telling you. How much longer is he in this current program? What do the latest program leaders suggest as the next step for him? Or an alternate to where he's at now?

Sending huge hugs for you and prayers up for M that the people who are supposed to be helping him now do the right thing.

 

[change]

I'm really sorry. All I can offer is prayers. I'm in the same boat as far as how you're feeling. You're not alone...just know that. Don't feel bad for following other people's advice and then feeling like you made a poor choice. That's my life pretty much everyday in regards to parenting. I know it's awful. If I didn't force myself to eat most days, I would be anemic and look awful due to the feeling of inadequacy in that regard.

Prayers and a giant l-o-n-g hug your way.

 

[Jena]

hi

ugh i was so upset to see this because you were so hopeful. You know the drill better than anyone, take a deep breath on this, it may be his reaction to all of this (it may pass), yes i agree on the change thing. Yet keep in mind you listened, spoke to very good people and doctor's etc sat with it and made the best decision for M as you possibly could have. You know that. So do not beat yourself up at all. It was a very good decision. His reaction to it at this point does not mean it wasn't. Don't give up hope just yet.

I do not know what your feeling right now, i have my difficult child about 2 miles from me at school, so i won't pretend i know yet i will say your strength and perserverance is always astonishing. He will come through this ok.

What can be done at their end now to help stabilize him, without removing him from the program entirely.

Keep us posted

my thoughts are with you, hugs to you

Jen

 

[DammitJanet]

Steely...this is expected. He isnt expected to jump into a program and be perfect. If he could do that he wouldnt need to be there. Everyone knows this. If he backslides too far, they will get him help.

Its entirely possible he will fight this with every ounce of his being..up to a certain point to see if you will come rescue him. I think this is the place I failed. And am probably still failing. I kept/keep allowing people to tell me I have no choice but to bring mine home. I kept hearing that he had completed some program or couldnt make anymore progress so they couldnt keep him. Ummm...ok...so now I have to take him and he isnt any better? Makes sense to me!

Please start really looking at the future. Is Matt on SSI? If not, start that process. Start really thinking about where he can logically live as an adult. It wont be with you. This may mean the most run down trailer park in town living on SSI and food stamps. So be it. If he doesnt have any legal entanglements he can probably get into public housing. Start that application for him because it can be long. Is there any assisted living places...check for them. Maybe group homes.

All this will at least give you the feeling you are doing something...anything to help him.

 

[lizzie09]

Oh my God Steely I am so sorry to read this.
As I have a son with PWS who get NO support for his episodes I am saddened for you and understand how youi feel/
At times it all looks so hopeless but I bet you are like me and will bounce back again and I dont mean that I think that is easy for you.
Sernding you hugs and understanding. x

 

[smallworld]

Steely, I'm sorry for all that is going on with Matt.

My son tends to be more shut down, irrational and oppositional when his medications aren't right. Is there a chance Matt needs the Lamictal that was discontinued? Do you know how it can be added back in?

Sending hugs of support your way.

 

[butterflydreams]

Steely, I too am sorry that Matt is having such troubles. I know your mom heart must really be aching for what he is going through. Hang tight, keep your prayers going. Sending big hugs.

Christy

 

[TerryJ2]

Steely, I know you are stressing. {{hugs}}
I'm hoping and thinking that from what you've told us about Matt, that he is resilient and he will overcome this. Nothing it with-o it's problems and nothing happens with-o effort. He's still supposed to be with-people who are skilled in their field so I hope they are helping him through this.

How did you find out? Did they call you?

I do not think you made the wrong decision. Any decision or placement is fraught with-what-ifs and errors, and when you take into consideraton the fact that anything can happen--people get sick, prescriptions get lost, the weather turns crummy--it's no surprise that at some point Matt would rebel.

I would suggest giving him some time with this downward turn b4 you consider rescuing him, hard as that may sound. He won't know if he's got it in him unless he is tried under pressure. I don't know if the system is backfiring, as you say, or just that Matt has found his limits and needs to learn how to deal with-his own issues. (I am saying this under the assumption that he is back on his medications after the snafu, and fed up with-all the moves in such a short time, not that they've deliberately done something to him or have been more incompetent than usual.)

He wouldn't ditch them and sneak home to you would he?

 

[katya02]

I'm so sorry, Steely. How long has Matt been in the over-18 group? Has it been a couple of days, or a couple of weeks ...? I imagine that, since he's been in UT for awhile, he's back on his proper medications?

A regression with change isn't unexpected, but with some time the new situation will become 'normal'. I would encourage you to give Matt time to adjust to the new group. You're his mom and always will be, but ... Matt is not a child anymore. That doesn't mean abandoning him or not caring about him but it means allowing him to cope with adverse circumstances himself. He will have to cope with change as an adult - moving residence, changing jobs, learning new tasks at a job, keeping up with everything that constantly changes in the adult world. By trusting him to cope with this change of groups, you will be helping him with that adult task. He has adults there to supervise; they may have a different decision point at which to call in the doctor, but they will do it if necessary. This is hard for him but getting through it will help him so much.

Janet had some good thoughts about looking into housing and services for when Matt finishes this program. It would surely help your peace of mind to know that there are services and supports available for him.

Lots of {{{hugs}}}. Don't second-guess yourself and your decisions. You made thoughtful decisions based on the best knowledge and advice you had. It doesn't sound as though the decisions were wrong - problems can come up with any situation, but the overall plan is still good. Let the past go, think of the future, and - very importantly - think of yourself! Take a bubble bath, read your favorite book or watch your favorite movie, do something nice for you.

 

[Wiped Out]

Just adding in my prayers, I'm sorry things are so rough right now. (((Hugs)))

 

[Steely]

Well, it has been a crazy, no good, very bad day.............for both Matt and myself, but mostly Matt.

He refused his Lithium last night, and than tried to wave around a handmade bow and arrow at the staff as he demanded to have for me to be called. They called, and of course, I talked him down, which always seems to be the case when we have distance. However, OMG, he is seriously, seriously suicidal. The pain in his voice reached through the phone and seized me around the neck, I felt so intensely horrible for him.

He is cycling so fast he does not even know which way to go. One minute he is suicidal, the next minute homicdal. It is everything within my being to not go there just to give him a hug. I do not want to rescue him. I do not want him to come home. I just want to hug him, and somehow, someway help him so that he does not feel so manic aka aggressive, and then depressed all within 45 minutes. OMG I would be exhausted if that happened to me every day.

Then the psychiatric hospital in UT started calling me to get my insurance benefits ~ and I flipped my lid. No one at this program has even told me they were thinking of driving him 3 hours to an inpatient unit. Even is that is the plan, good luck with getting him there since he is 18.

Then I talked to everyone involved and they all assured me that no one had even called the hospital. Whatever. It is all I have in my being not to fly up there right now, and take control of the situation. I do not want to bring Matt home, or rescue him ~ I just want this situation to be handled in the a way that makes Matt better and healthy again. Is that too much to ask?

What a horrible predicament to be in as a parent. And so many of us are there. My heart just feels like it is breaking for every parent here, as well as for me........I swear if I had bottled up my tears all these years for Matt it would sink a ship, let alone a person.

PS
No, the medications that were d/c at the hospital were not restarted because it takes weeks to titrate up on them. He was doing OK off of them, until now, 5 weeks later, with all of this stress. Cr@p, I don't know what to do about the medications, and there is not a p-doctor at this wilderness program.

This program he is in is only an intermediate program to transition him to an adult living situation. Once we can get him stabilized, than he can transition. Then again, at this rate........I don't know what we are going to do.

 

[Stella Johnson]

I'm so sorry to hear he is falling apart again. It must be very scary to have him so far away and cycling.

Are you sure this wilderness thing is right for him? It still sounds like more of a program for troubled teens and not necassarily ones who have mental disabilities. From what i know of others teens, an EGBS or Residential Treatment Center (RTC) type program might help?

(((hugs)))

Steph

 

[amazeofgrace]

so sorry sweetie, know I am praying and have you both on my heart!

 

[Steely]

Yes, I agree..........The more I am thinking about it, I am feeling that this might not be the right placement for him.
God, how could I have been so naive to think this would work, when I know him so freaking well.
There is just too much physical and mental stimuli............and he is self destructing.
He is doing worse and worse, even tonight when I checked in with the counselor, things are going down hill faster than before.
Now what the H do I do?
OMG.
I feel so helpless. And oh so freaking scared.

 

[smallworld]

Steely, he needs care by a psychiatrist ASAP. However you make that happen, I think that should be the goal. Hugs.

 

[Stella Johnson]

Don't beat yourself up. It won't help anything. You were trying to help him. Is there a decent psychiatric hospital in the area where he is?

Steph

 

[TerryJ2]

I do not want to bring Matt home, or rescue him ~ I just want this situation to be handled in the a way that makes Matt better and healthy again. Is that too much to ask?

No. It does sound like they are not the best at handling his type of case. I wish I knew what to suggest at this point. But it definitely sounds like he needs medications and a calm, stable, safe place to be.
{{Many, many hugs.}}

 

[Jena]

hi,

i read your post and the pain your in. I"m going to say it again you are not naive or your thought process was not skewed you did what you felt was best. I know it is so very hard when your emotions are raw as they are now (from experience) that not beating yourself up is close to impossible.

try to remember though you always function with his best interests in mind. If he doens't calm over the next few days I think maybe removing him would be the best option and get him into a dr. to start the medications again. it's ok that you tried this and it didn't fly. yet how many days has it been now like 5 or 6 since this occurred? how is the staff there handling it? is he getting sleep at all? take a deep breath, call the place again and ask them you know matt best what are his days like now is he able to function to any degree at all, is he sleeping eating? can he be left alone at this point for any measure of time. get their feedback. then sit quietly and start a pro's and con list. pros' of him staying and what is currently going on, con's of him leaving and where would he go next. i often find when i put it on paper it removes my sadness a bit and makes me more functional my emotions become less raw and i am able to look at it from a different perspective. i wish i had more answers for you.


(((( hugs)))))

 

[Steely]

Thanks guys.
I am waiting for the dang phone call from the program that I have waited for for the last 24 hours now.........and they are late. So I am just sitting here, trying to figure out what to do, and what to say, and where to go from here.

There are so many challenges.
One is that getting him into a psychiatric hospital is not so easy anymore since he is 18.

Two is that it will not happen without me being present to make sure I am his advocate in the medical process. I have seen too many things go wrong, to just not be there for a hospitalization.

Three, the staff at this program are counselors not medical doctors. So their comment to me is "he is safe" just calm down. There is a red button for me! Let me see, if I said, I am going to drive a car over your foot every 45 minutes for days on end, but "you are safe", what would you say???

Why don't people understand that is what mental illness is? It is just as painful as someone driving over and over you ~ and yet not dying. Which is why he wants to die. It is like when you get the flu so bad, you want to die..........that is what it must feel like to a child/person that is cycling every 45 minutes all day long.

Fourth if I can get him in a hospital, how do I pick the right one in a city I know nothing of? How do I find a safe one? A qualified one?

Fifth if he is hospitialzied, than what? I guess from there he would just move right into a transitional living adult program. However, I worry about how I find the right long term place, when I have done so miserably with these 2.

God help me.
I will update you guys after the conference call. Thanks for your support.

Oh, one upside ~ out of the blue, 2 weeks ago, a dear employee told me that I had been on her mind (this was before all of this with Matt), and that if I ever needed to leave town to go find out what happened to H. she would be honored to dogsit. It touched me deeply. I called her last night, and said I am not ready to tackle H.'s case ~ but I may need to go help my son. She came over today, and is all ready to take care of the 3 dogs and cat as much as I need.
HUGE relief to me. HUGE.