It's time to let go...

[Pamster]

Been a rough spread of days, we did see his p-doc and she raised his medication that I knew had to happen and he was doing great until yesterday, he got so agitated and just into so much trouble. He put some duct tape rolled up in a ball into my hair when I wasn't expecting it so I ended up losing some hair unfortunately. He was angry we wouldn't give him any sugar free ice cream, needless to say we won't be buying it anymore.

He made a huge mess in the bedroom, mom brought over a bag of clothes someone from work gave her and he fit into about half of them, but obsessed on the other half and unfolded them after we'd folded them all twice. I get so exhausted with this kid, no one should have to live like this with such chaos in their live, but doing it with BP II on top of his DX? Ugh, I am really ready to just give in and send him packing to a group home and move out of this nice place and just exist somewhere in peace.

But the kicker is there are no group homes in our area that will take him. I just hate this situation. He broke a vase from my childhood last week along with a keepsake mom had bought in Mexico twenty years ago...I just hate that my stuff can't sit in tubs and be LEFT ALONE, I have NO possessions that are safe...so I have had a real sad week. Just hate sharing sad and depressing stuff, but that's what's happening. I wish he could learn to repsect other people's stuff, but I don't see that happening. :(

I hope that I can find a place or a roommate who can help me pay the bills and be able to stay here with me. I will post again when I know how long the wait is going to be for a group home. I am jus lost in a sea of torment here right now and it's got to stop, Jackie is taking risperdal now and it's not helping, nothing helps...I hope that if he finds a new environment postive that he can leave this violence behind him and grow up into being a good boy, even if it means we won't be living under the same roof anymore. :(

I hope everyone understands I think about you all every day, I come and read, but I just can't post, I haven't been able to for a couple weeks and I know you all think about me too, so I am sorry if I worried you, but I just hate posting about the sad stuff. :( Take care everyone, I think of you all fondly and wish you lots of luck in your days. :)

[moose53]

((((((Pam)))))),

http://img.photobucket.com/albums/v90/moose53/MINIS/HUGS/diddl-maus-044.gif

My heart just aches for you :( I can understand why you want to do this.

This might be kind of a weird question, but, hey, I think I'm a "talking moose" so I guess you can't get much weirder than that. Have you ever tried writing to "Dr. Phil" to see if he can help you?? I know it's a long shot, but, you'll be waiting for a placement anyway, right?? So it couldn't hurt to see if you can get on his show.

My son, when he was younger. Troubles. Fire-starting. Anger. Rages. I was never given a diagnosis by any of his psychiatrists -- other than dysgraphia which is difficulty writing due to fine motor control problems. His Father and I were divorced and his Father made every effort to do the opposite of what I was trying to (to 'balance' he said :mad: ). Whack-job :mad:

So ... I understand the fed-up with aggravation and troubles and tears. I understand it so much. I wish you weren't having to experience any of this. This is a time for Mothers and sons to be close and to have fun. I know that's all tanked because of medical and psychiatric problems. I ACHE for you. Pam :(

My son gets out of prison in a few months (road rage). He took, maybe #6 of an anger-management course recently and it clicked for some reason. 40 years old and he finally GETS IT. I sure hope your journey is not like mine.

That's why I'm suggesting "Dr. Phil". If you could get him the help that he needs now, it would make such a huge difference. I'm sure it would.

I believe that there is always a way to reach a kid that's having problems. It's a matter of finding the right key. Parents are restricted in this because of "school rules". There's so many different ways of teaching kids. If you let a kid play in the dirt with his trucks, he learns construction. If you let him collect bugs, he learns science. I had no problems at all in school. And I can honestly say that I didn't really start to learn until I got the heck of there. But, you throw in problems like my son had/has and like your boy has, it just makes it so much harder -- like swimming against the tide, huh?? :(

I can't do much except pray for you guys and hope that BETTER is in the near future for both of you. Of course, I can ((((((HUG)))))) you too :D Sometimes, you just wish you could do more.

You sound really tired and worn out and hurting -- do you have any relatives or friends that can give you a break. Even if you could just go out by yourself and get a cup of coffee -- sometimes that takes the pressure off the pressure cooker.

Does he calm if you do things with him -- like cooking or art or, I don't know, making a snowman, or going for a walk?? Do you think he's got the same inner rage that my son had when he was young??

Someday, I want to talk with my son and find out if he's figured out "WHY". I think a big part of it was I was extremely depressed and suicidal when he was young. He heard things from people that should have known how to keep their bloody mouths shut. Then there was the divorce. Sigh!!

I don't know but, I think that lack of success in young boys manifests itself into an anger or a rage. I can't imagine what it's like to not succeed at anything. The boys and men in this country (world-wide actually) -- a lot of them are having problems with rage and anger. We never get away from it anymore with the Wars and the horrible images on television. All they see are images of grown men fighting all the time. Sad.

Well, I'll get off my soapbox. Just know, that my heart and my thoughts are with you. I've been in your shoes -- for a slightly different reason, but, still, I understand. Bless you both. BIG HUGS.

Barb http://img.photobucket.com/albums/v90/moose53/MINIS/HUGS/holding-hands.gif

[Isabelle]

Pamster, in your case i believe that's something has to be done asap. hopefully, you'll find a kind place, willing to connect with jackie. have you already been looking at those places? as i said in your case you need a lot of support i don't know why social services is not there for you....

[milivica]

Pam, I sent you an email, we'll talk tomorrow ok?

This is not hopeless, I swear. But you need a right now solution. I know.

Glad to see you didn't do what I did a couple years back - remember when I posted my address and phone number online to anyone that wanted Vince. Remember that? Remember how crazy I felt?

Once I actually looked at Vince as he slept and felt he was the spawn of Satan, of evil, I mean I knew it wasn't logical. But life isn't logical when you have nothing you cherish unbroken, nothing is sacred or safe from destructo-boy, or so it feels, at least that's how it was here.

There were times feeling numb, was the best I could muster - it was definitely better than feeling. And when I say there were times, I think that means 'years'. With intermittent moments of celebrating what other parents with nt kids would complain about.

I'm so sorry things are so horrible right now, I'm here for you just like you've been here for me.

I'll talk to you tomorrow. I'm here, I'm here, I'm here. You're my friend, you will be forever, through thick and thin, I'm here. Call anytime. You can't call too late so don't worry about that (cause I won't wake up if I'm asleep, so you literally can't call too late).

Love your true blue friend Lisa

[Kristen (ColeysMom)]

Pam, gosh...I don't know what to say...

It's moments like this that I wish I had a magic wand! I know that's not helpful...I feel so incredibly helpless...I can only imagine how you feel!

And I know it goes so much further than that...I know this pales in comparison, but we decorated the tree this past weekend. We did have a blast...but we also had several broken items...and it's not like it was an accident, oh no, that would be sad or whatever, but it was all about his focus and stubborn/independant streak...the very thing that has me SO worried about his future...but then underneath it all, the pain and worry that is, is this pang of resentment...it wouldn't be so bad if it were an accident...it's that nagging feeling that this is the same thing that will happen to EVERYthing if things don't change!

You deserve so much more, this is SO hard, and why can't we just be able to enjoy the simple things, like that ornament that meant so much to me, or whatever...I mean for cripe sake what I really want is a vacation that feels like one, or one of those hallmark ice skating moments, or a Norman Rockwell ice cream...nope can't have that! So why the heck can't I just have a stupid ornament that reminds me of calmer more peaceful days?!

Girl, I wish I could hug you right now!!!!! I just can't imagine how hard it's been for you to even think about this never mind come to this decision...

I SOOOOOOOOOO wish I had a solution for you, how your heart must be breaking right now...I mean how much more of a failure could we as parents feel...Christ, it seems the world would have us believe that! And to feel like there is nothing you can do that someone else couldn't do better...my heart just aches for you right now!

And on top of it all...at this time of the year!

Sweetie, please tell me you have someone close by that is able to support you...

Please don't leave here...and don't worry about posting sad stuff...that is what we are here for!!!

And if that doesn't work for you, please PM me so we can trade e-mails or phone numbers!

OMG! I feel like I can't hit the send button...I just need to know you are ok.

Please post back soon!

Mili is so good at coming up with ideas...I KNOW she's got something good and I'm praying that God inspires you both!!!!!

[[[[[[[HUGS]]]]]]]

[MaryEvelyn]

Pam my hart aches for you and I sooo understand where you are coming from. We will not judge you because I believe that at one time or another we have all felt the same way. I remember that when Kyle was in 5th grade I thought that was the only answer for us we were seriously talking about putting him in a home because he was just starting to get scary with Rita, I thought he was going to hurt her. Than over the summer as we waited to talk to his doctor he just calmed down, this is they way it goes with him he will get really out of control than calm down. The spaces between these times have grown longer with more calm than storm, however I am never sure when the storm will come. I love you Pam and I am sending you a PM with my number. (PM me back with yours so I answer it, bill collectors you know) Just know that everyone here is sending you a large group hug.

[Kristen (ColeysMom)]

M.E. - I just wanted to second that...I have actually never thought of putting Coley in a home, but I have thought about abandoning him on the hospital door step..which I guess amounts to the same thing.

More often than not I think about walking out the door never to return...and I swear the thing that always stops me, not that I've actually gotten too far, but what finally stops the idea from growing, is the thought of DH trying to manage him all alone. I mean it's SO hard with the 2 of us... I just can't imagine how hard this is for anyone doing it without support from their spouse! I mean the fact that you guys don't crack is testimonial to your strength...

I have also thought about doing myself in on a fair number of occations...the stress is just too much sometimes! But for much the same reasons as not leaving...I have been able to wipe that idea out of my head...sad thing, not because I want to save my own existance, but because I don't want to make things harder on DH.

My existance...eeehhhh...what's it worth, cripes I can't even raise my child right...right?!

Reason I wanted to say all that, is because I felt doubly bad about everything for feeling this way....

You need to know that it's totally normal and totally understandable...and your mind and body and soul is telling you that you need a break...LISTEN TO THAT! I don't know how possible it is, or what you wouldl have to do to get a little me time...but you need to find a way!

Meantime, KNOW you are NOT alone!!!!!

[[[[[[[[MORE HUGS]]]]]]]

[AKF]

I'm so sorry it's gotten this way for you, but I understand where you're coming from. You sound like you're at the end of your rope, and I guess you are. We understand!! I know that doesn't replace the broken things or make your life any different, but know that we all support you.

I'll pray that you find a solution soon.

[peglem]

I know my feeling bad for you doesn't help you one bit, but I do anyway. I've been in the situation so many times. What do you need? Do you even know? Try not to let the pressures of the holiday get the best of you. What helps me sometimes is to just let it happen- "wreck whatever you want-go beat yourself up, you little booger, I'll deal with the consequences later." 'Course that only happens when she's completely broken my spirit and I'm sobbing miserably and just can't face another moment.

What happened with that assistant or something you had for him for awhile- I remember something happened that you had to change workers and then the second one didn't work out- but are you still eligible?

[milivica]

Mili is so good at coming up with ideas...I KNOW she's got something good and I'm praying that God inspires you both!!!!!

[[[[[[[HUGS]]]]]]]

Actually Pam is fantastic at ideas, when I manage to shut up and let her finish a thought. Also, when you have bipolar, it can be even harder to manage what is already, hard enough. Pam, to top things off, are you on a low right now? I can't imagine going through what you are, and being on a low to top it off. Call me aye? Jackie is at school today, yes?

Love you,
Lisa

[matika]

Pam.
Have a big Hug from us in Oregon. I wish there was a way you could get the help you need. Seems like the help we all need the most, we put on hold for until or nerves are fried. I can't say much more, I do not know what you are going exactly through, but I can imagine me going through it and it would tear me appart.

Hope you can find a home soon.

Blessings

beky

[tgrimes]

Pam - I feel so bad for you. I know I am overstepping my boundaries by saying this , but please don't do it. We can give you a break - Jackie can stay here for respite for a month or two until you feel strong again... Just drive down to pinellas and see if he would be willing. He would love Theo, I just know it.
You are just a couple hours away, right?

[milivica]

Tgrimes, at this moment I cannot think of a human I admire more than you, not even MLK.

What about it Pam? Something be worked out. Give you some sort it out time, some break time to think, recharge.

[Kristen (ColeysMom)]

OMG Mili, you beat me...I just read this reply and Grimey I am crying at your generosity and kindness...

Pam I swear to god, if you do not take her up on this, I will drive down there myself!

Even a weekend here and there...might be a GREAT opportunity for Jackie & Theo to become friends too...wouldn't that be awesome!

[LauraP]

TGrimes, what a wonderful person you are--words can't express it!

Pam--it is hard, when you are feeling besieged, to accept help from folks--I know, I've been there. I always wanted to be the person offering help, thinking that that was the path to grace. But, ya know, there is grace too in accepting help from folks who love you and Jackie. I was going to post to see if there were any sources of respite for you, so you can just breathe, fer cryin' out loud (seriously, sleep and rest from the problems can give a whole new perspective--they have to give leave to soldiers every 6-12 months, and you've done YEARS without it, under difficult circumstances, and you deserve a rest).

I felt really guilty about using respite services at first, and that was when Sierra was at the height of her destructive phase, when I wasn't getting any sleep, and was getting punched, kicked, head-butted, etc. I seriously thought about leaving, and I'm fairly sure I said it out loud more than once with my kids in hearing range. But, like you, I had to survive to be there to take care of all the responsibilities I had. Now we use respite camp twice a year (for a week at a time) as a chance to recharge our own batteries, even though Sierra is now an absolute delight to be around, and sacks every night at 7:30 p.m. and isn't violent. And having something to do is so much fun for her--the kids need a change of scenery too, right?

There is this old joke--a guy lives in a flood zone, and the river is rising, he's on the second floor, praying. "Please God, send me a miracle!". The Police Department comes by with a boat, the guy says, "No, I'm waiting for my sign from God!" and shoos the PD away.

The water continues to rise and he has to go up to the attic. Then, the State Emergency Response team comes by with a raft, offering to evacuate him, nope, says the guy "God will send a sign!".

Finally, the waters rise to the level of the attic, and the man is on his roof. A FEMA helicopter flies overhead, and they toss down a rope ladder. The man says, "Go away! The Lord will provide!".

Well, the inevitable happens, he does indeed drown, and goes to the Pearly Gate, where he's met by God Himself. "Lord, why did you abandon me? I was waiting for Your sign!!!" God says, "Joe, I sent you a boat, a raft and a a helicopter--what more "sign" were you looking for?"

Corny, but the point is that sometimes the answer comes in an unexpected way. Take Grimey's offer, and know that we are all rooting for you. A little time away will make all the difference in your perspective, and then you can make the right choice for you and Jackie.

Hugs from me too!

[RathyKay]

(((Hugs))) I didn't have a chance to post last night, but I did include you and Jackie in my prayers. I wish I had some wondrous advice for you. It's hard to ask for help, and it's hard to accept help. I do think some grimey respite would do you a world of good... just to have a chance to sit and maybe think clearly without worrying about what Jackie's going to do next. More (((hugs))), because sometimes you can't get enough. And prayers that God shows you the way.

[milivica]

Hey Pam. Went to bed thinking about and praying for you and Jackie, woke up the same.

If you're not already, get in touch with Grimey. Imagine what a weekend of recharging could do for you? And no doubt Jackie would have a blast.

Grimey you rock beyond what words can express.

[Pamster]

Oh I couldn't burden you like that Grimey, but God Bless you for the offer! :) I just spoke with his dr today and she upped his risperdal to three times a day, so we'll see if it helps. I just couldn't push him off onto you like that, but you are so wonderful to offer, thank you so much. I know his father wouldn't go for it though, even though it might be a good thing for all of us. We would worry the entire time. I am sur eyou understand how that feels, it's awful to not be able to relax, but I am able to finally with him in school. He's doing better in school.

We'll see how things go with the new increase the dr ordered in his risperdal. We go in again next tuesday and I fully expect to see him off the abilify Sunday like she told me to do when we talked today, and to see another increase. It will only be up to .75 by the time we see her Tuesday, but she might order another .25 tablet at 4 pm when he gets home because he is just so agitated in the afternoons that is when it happens.

Have any of you seen the documentary, "Stevie" (http://www.imdb.com/title/tt0334416/) before? It really made me cry seeing this developmentally disabled young man in such pain and in such trouble. It has me rethinking the group home option. I don't think I can do it just yet if at all. I just think that things have to get better with risperdal. They just have to.

Thank you all so much for the support, I have never imagined how hard things could get, it makes me appreciate his babyhood even more because he was a joyful little spirit, it's just that someone in school, another autistic child in his class taught him to be this way and I just don't know how to undo the damage. *sigh* I will keep you all posted on how things are going, thanks so much for your warmth and compassion it really helps me recharge a bit, thank you.

*hug

[milivica]

I'm behind you behind you behind you! Just think about this some, and just this once, think about you over your dh, it's not wrong to do that. Your dh is not a mom, it's different, I don't know why but it just is. Like we take our family's happiness and well being as being our job or something, and our joy revolves around theirs. At least that's a lot like it feels for me. When they're all happy, I'm like 'sighhhhh' sooooo soooo happy and content.

And yep, I sure saw that Stevie documentary. In a million years I don't see that future for Jackie, already he's known more love than Stevie has in his whole life.

[moose53]

((((((Pamsters)))))),

http://img.photobucket.com/albums/v90/moose53/MINIS/HUGS/thanksforbeingthere.gif

Keep Grimey's offer over in the corner of your mind. Sometimes, The Universe steps up and offers us another alternative just in time. (We can all see Grimey's halo shining -- we might just have your guardian angel hanging out on the forums here :D ).

You said you have problems with after-school/afternoons. Have you though about breaking up the afternoons a few times a week with something to do outside the house -- like going for cocoa and cookies at the local coffee shop or going to the library to pick out some books ... something that will act as a transition between school-time and home-time. Jackie might be one of those people that actually needs an "unwind time" at the end of his day. I know when I used to work ... it was hurried and stressed environment ... I couldn't switch right into my "home-face" when I got home. I used to sit down and have a cup of tea and watch the 6PM news as a transition.

Pamsters, you've got a ton of support and understanding (and also prayers) standing beside you.

Bless you and your dear, sweet boy. Hugs.

Barb http://img.photobucket.com/albums/v90/moose53/MINIS/HUGS/friends2.gif

[Kristen (ColeysMom)]

Pam & Grimey, here's a thought...not way out there so maybe you've already thought of it...

Maybe you could have a weekend away the 4 of you to sorta see how the 2 kids get along & all.

Maybe a sleepover with Pam & Jackie...

Maybe just an afternoon at some kid type place...

ease into it...

Who knows, maybe in time you guys could swap off some weekends...

I have a great feeling about it...maybe a good friend would do wonders for Jackie, and maybe Theo too...

It really does sound like a Christmas wish come true you guys...I hope you both take advantage of your relatively close proximity and your understanding of eachothers situation...I'd give anything for that!!!!

I'll but out now....praying for you and sending big hugs and loads of positive vibes!!!

KJ

[tgrimes]

I just couldn't push him off onto you like that, but you are so wonderful to offer, thank you so much. I know his father wouldn't go for it though, even though it might be a good thing for all of us. We would worry the entire time.

I totally understand how it might sound like a scary idea, but the offer still stands, no problem... we're all in this autism thing together, that's why we're here. I think everyone here knows what it feels like to feel desperation. And that's why we're motivated to help when we recognize it in someone else. So i'm still here if you ever need a break.
Sometimes just knowing you have a back up plan, when all else in your world is going wrong, is a comfort.
Like everyone here says, it wouldn't be a bad idea for all of us to meet just to spend a day together or something, that would be nice, we would probably all have a good time. Then, you always have that back up plan in the back of your head to comfort you. Sometimes that's all you need, is the feeling that you have options, so you don't ever feel trapped.

[Pamster]

I'm sorry I haven't replied to any recent PM's, I just haven't had time, been sleeping or shopping during the days and taking care of the lil guy after school. I just wanted to post that the increase (up to 3 .25 tablets a day) is making him a little easier to deal with, but he's still being aggressive. I don't know how much more we can take. But we go see the dr again tuesday and I expect another increase in the risperdal. He's almost off the abilify now too. Last dose is Saturday.

He was in his school 'play' today, they did a song from Peter Pan and he was awesome! So that's encouraging, people are pleased with his progress and all he's had have been good days since we increased the Clonidine a few weeks ago. So who knows? He's so unpredictable. :( It might work out. :) Just wanted to thank you all for your inredible support. It's helping me to stay strong and lord knows I need to do that, for everyone's sake. :)

[Kristen (ColeysMom)]

Thanks for posting Pam! I'm glad you can see a ray of hope!!! :)

I'll keep you guys firmly planted in my prayers! I hope all these med changes settle him down!

Sending hugs, positve vibes and LOADS of prayers!

KJ

[Pamster]

I swear I posted yesterday, weird how it's noth here today. I hear the state of florida has cut funds for the med-waiver so the only way to get off the waiting list is when someone else moves off it. It's just not fair that they did this to the programs, we need to be able to place him soon, not six more years from now if that is how long it's going to take to get past the folks on the list now and see them all placed before us so we can finally get our son placed.

Oh well, what a disappointment, I don't know what we're going to do if this risperdal seriously does NOT help eliminate this awful aggression/violence. I will PM you Grimey and we can talk about meeting, I am sure Jack will be against it but I would enjoy it and I am sure our kids would too. :)

ETA: Okay now I am officially freaked out, my post from yesterday was NOT VISIBLE when I wrote this, yet there it is now...Could you both see it yesterday? :eek:

[Kristen (ColeysMom)]

Ya, that's what I was replying to....

I wanna just add one more thing...and I almost hate to type it in a way...but feel like I should, as I look in from the outside of the situation, ya know...

First off, I can imagine what you are going through...Coley on tegretol nearly brought me to the brink...that was only 3 weeks though...so I am in awe of your strength and patience! I really DO hope you guys find the right dose, and FAST!

Well, having said that, I gotta just say that the answer for us, and perhaps you guys too, was a different med. So, even if upping the dose doesn't work...there is still hope...although it will require a HUGE muster of courage & strength on your part...med changes $UCK, as you know!

It's funny, with Coley, the meds always seem to do the opposite of what they are supposed to...baring that in mind has helped us on more than one occation!

Ok, just a couple thoughts...

Still praying hard for you guys...and sending more [[[[[[hugs]]]]] your way!!! Pam, you will get through this, I promise!!!

KJ

[Isabelle]

caring for our children there are tough times, hopefully the increase of risperdal help both of you through this rough patch and then work through the underlying problem and reduce slowly these drugs. risperdal is notorious for increasing weight and appetite which take you to hyperglycemia and diabetes. And, as you know some children develop bizarre, aggressive behaviours....good wishes!!

[milivica]

Oh Pam, I'm so happy to see you are going to talk to Grimey about getting together. It seems like this could turn into something great for both of you, just being in close touch with another mom that can understand, and visa versa - sometimes the whole isolation of autism itself is a whole nother facet of why it's so hard.

Anyhow I'm tickled for both of you, I think it's a totally great idea. Pam, my dh didn't even like the idea of moving out of our home state, or therapists in his home or pretty much anything I wanted to do. I'm may be a self centered wife, but when I see what my kids need I'm driven. I can't help it. I don't want to help it. I cared if he liked it or not, but couldn't stop if I KNEW it was good for our kids. I'd go forward, then when he'd see it was good for them he'd be fine. Then again, he's always claimed I'm the most stubborn person he ever met, so what does he expect, right?

Well I'm just absolutely happy for you both and your kids.

The risperdal, though it was fantastic for Vince at first, it seemed that it only lasted so many months. Then even bumping it up, didn't seem to do it. When I looked up info on risperdal, I remember reading something about it being effective for only 6 months when used for aggression or something like that. I'm saying this cause if you are using risperdal due to the emergency nature of things, what if another med would work more effectively? I hope your doc guides you in the right direction to get things more level and livable and safe in the family for everyone for the time being.

[Jamies Mommy]

(((((((Hugs))))))))
What state are you in? I'd like to help search for resources for you. here in California there are a couple of places where you can just get a weekend respite from your child intead of committing to the 24/7 group home. Is there some type of Afterschool/ Social Recreation Program you can get him in? Jamie goes to one for 2 hours a day after he gets out of school and it sure helps!

[Pamster]

Florida. I am going to be getting a behavior assistant soon, like beginning of next year. and respite care so things might be a bit better then. Jackie is still agressive and we're thinking it's time to give him a go of him being off anti-psychotics for awhile, so beginning next year I think we're going to talk to the doc and wean him off them slowly. :(