iliveforyou

Earlier I replied to a post and it brought back a flood of emotion and many tears as I was reminded of my best friend/soulmate's death. He died back in 2004 at 29 yrs old from complications of alcohol. Is this even normal after so long??? I don't know. I'm a mess. It hurts so deeply and it serves as a reminder how addiction can end. I walked away because I couldn't watch him kill himself and he had a baby girl I didn't want to keep him from. I never said goodbye. No closure. Was this enough to make me stop using heroin? No. Has his memory stopped me from from further addictions years later? No. His death tortures me and I feel like I should be "over" this but don't know how to reach peace.

On another note, I am having great difficulty with my daughter. The autism seems to be getting worse and I feel powerless. I bust my a$$ to do everything for my baby girl and still she's locked in her mind where I cannot reach her. And we won't start on my husband.

I am really hating life right now. The last couple of days my bipolar doesn't seem to be under control by these meds. I am having urges to use, perhaps triggered by all this $hit.

I feel so damn alone inside my mind.



-Jess

FT

Hi Jess,

I don't think we are supposed to get over the death of someone we loved. As much as we want to, the scar remains, and the wound can be reopened and hurt almost as much as it did to start with. At best, the pain dulls and becomes part of our deepest memories. Occasionally, I will see someone in a documentary about people who died in various wars, or in the holocaust, and if you watch the survivors recount those things, the pain they still carry is still so incredibly deep, and the tears rise to the surface very easily. So, you will continue to hurt if you go there in your heart. Maybe in some way, it honors the memory of those lost to us.

I am not an expert on autism, but I do know that growth and development, both mental and physical, is not always linear. And with developmental issues in kids with autism and other challenges (not to minimize hers), setbacks are probably more the norm than the exception. It's just that when we see progress, we want more. When we see stability, we want it to continue. When we see crisis, we want it gone.

Your daughter still has a promising life ahead of her. The kids that get through these challenges and still become amazing adults is by virtue of the parents and support people that surround them, making sure no opportunity is missed. Not all kids have that. Even kids without special challenges like she has don't always have the opportunities they could have, because they didn't get that support.

Jess, you work so hard, and I know your life is a struggle. At your young age, you can already look back and see all the things you have done right. Sure, you've done some "wrong", but so what. Of course you will be triggered by additional stress like what is going on with her at the moment.

If you are struggling with meds maintenance, I would urge you to contact your docs and counselors if you don't feel better pretty quickly. Maybe you need some medication adjusting. You know self-medicating only makes it worse, and you don't need chiding on that point.

Again, Jess, I think you are awesome.

Ft

NVRAGAIN3PCT

I'm here for you.

I understand all to well. Thought of you yesterday when my sons repetitive behaviors just about drove me to find ANYTHING to use. I swear I can't stand it somedays. I think no wonder I used. And I've got years to go

And sometimes we never get over losing someone. I feel like that with every significant other in my past. I so feel your pain.

You are not alone. Trust me.
I pm'd you. Hold tight.

You are doing great. Just hold on.

Hugs

MalcolmBliss

Hi,
If you don't know me, it's o.k. I had a friend who died from a heroin overdose. He was my "brother". I never got to go to his funeral or say goodbye either. So we have a similar situation here.
I too have a son who is developmentally-delayed. It's quite a challenge.
I have not forgotten about how my best friend left everything behind or can even understand why it happened. It still hurts the same.
I hate to say it but sometimes when these things well up inside you have to try to find another project to keep yourself busy. That is all I can do.
I'm sorry, I really have no good advice for you here. You're not alone.

FT has good advice about your medicines. The doc knows best in this case.

I really wish there was something I could say to make it better. I truly do feel the pain you are dealing with. I wake with it everyday. I'm so sorry.

Try to live for your child, it's the best thing you can do right now. I'm trying to keep my boys and my daughter happy, it's hard when you can't keep yourself happy though. I have done some things to make them laugh, I think about that stuff a lot. Perhaps that will help you.

iliveforyou

FT - I mention losing him in a reply and it opened up the floodgates that quickly. I think it has a lot to do with never saying goodbye and walking away from him when he needed me most. That tears me apart inside. I have never in my life felt the connection of a soulmate before. I only have 3 pics of him and honestly he looks terrible :\ It was shortly before he passed. He had dedicated the song "Vincent (starry starry night) to me, particularly the part of "this world was never meant for one as beautiful as you" F*cks me up every single time!! Sorry, getting this out seems to be helping. I'll carry his memory around forever until I die, I just hope that pain "dulls" as you mentioned. FT, you are so damn supportive, it's unreal. Always there in a time of need. So thank you. Again.

I know setbacks and regressions can happen...at times often. With my daughter...well, she experiences too much I sit here and watch how she's fighting an internal battle inside her head and it rips my heart to pieces because I stand f*cking HELPLESS. I spend the better part of my day, correcting behaviors, re-directing her to stop the excessive stimming. My heart breaks because this is the world she knows, she has so many sensory issues that cause her PAIN that I can;t stop - that is hard to accept. I can only try and make it easier on her. I know we can't always stop our children from experiencing pain but damnit she's only 3 1/2. I hate the parents who say " oh I hate this happened to me, or why did it happen to them". WHAT??????!!!!! Get the he!! out of here. Your child is the one who this happened to. I go to the grocery store and people stare because my child becomes out of control because of a sensory overload. They stare, they laugh, they point, the say ****, they tell me all she needs is her a$$ beat, asking me if I couldn't have left her at home. I always stand strong and have witty, hurtful comments back but inside I'm crumbling because they are laughing at my daughter. It's like a stab in the heart.

I will do EVERYTHING possible to make her life a great one. I will give her the tools, work on independance, homeschool her, do therapies, get her out and about into social groups and out to learning experiences outside the home. I will never give up on her. I have a psych appt for her Monday at 830am to determine if she's to get social security. Every single drop of it is going in a new acct that is not to be touched AT ALL unless she really needs something. Wanting to save when she gets older and will need tutors on subjects I cannot teach. She desperately needs this because the services they provide here are poor and they are trying to take her medical card away

I do work hard indeed and sometimes I wonder WHY (when it concerns household stuff) when I do everything and nothing is ever appreciated. I am running myself (and my back and knees into the ground) to do all of this!!!! I'm in so much physical pain and at my last check up things were depressing. He had taken new xrays of my knees and he said by 35 I will more than likely need replacements if I want to walk but then comes the issue of my back...things are only getting worse back there and this $hit is depressing. I have soooo much I want to do with Moira here in Chicago and all the wonderful things I want to do...but can't because I am well on the way of being literally crippled (not using it as a bad term but a REAL term) and I just want to scream. That and mymental illness - how much can a person TAKE before they SNAP?????????

I talked to my pdoc yesterday actually and she thinks everything is okay for now but to call her if it gets worse....

Thanks again FT

iliveforyou

NVRA - Oh, how I understand your struggles as well. My daughter does little else besides repetitive stim behaviors :\ I have also let it cross my mind "no wonder why the hell I used" We have a special job and blessed with special children (I'm an atheist)...they are a challenge but parents like you, I and Malcolm (and every other parent who takes care of a special needs child & doesnt neglect and abuse them or their needs) are special parents I dont believe in the saying "special parents get special children" I call BULLSH*T b/c we would see the horror in the news about this disgusting crap But anyways, please feel to PM anytime, I will write you back as well. Sometimes we really do need someone who understands!

*hugs* You are not alone either my friend

-Jess

iliveforyou

Hi Malcolm!

I have seen you around once in a while, although it seems to have been a while but I do recognize your s/n

I'm sorry about your friend's passing and I'm sorry you never got to say goodbye or go to the funeral. It's really hard, I know. Heroin is a devestating drug, I escaped it after using only 2 1/2 years but it did land me in prison. Saved my life that day because I promised I would die using at the time. This was end of 2001-2004 <--when I went away. Sorry I am rambling...again.

Yes, taking care of a special needs child is VERY challenging and taxing emotionally and physically. How old is your son? My daughter is 3 1/2.

I also cannot forget how he left a wonderful famiy and a baby girl behind that he had with his ex. It's such a shame what addiction with do. How it turns wonderful people into people we don't recognize sometimes. Wasnt the case with me because I met Daniel while he was an alcoholic. Was well aware of all of it....doesn't hurt any less. After all this time has passed. I see a rare picture of him and instead of smiling, I start bawling.

I agree, I had to find something to distract myself with, which happened to be music (just nothing he listened to lol). Usually worked. Oh, and I had cleaning to do cause my daughter destroyed this living room again for the 6th time this morning :O

Yes, you are right. I need to live for my daughter and focus on her She does give me incredible strength to keep moving. Making them laugh is the best!!

Thank you for your thoughtful response!

-Jess

FT

Hi Jess,

For what it's worth -- the human brain and body constantly seek equilibrium, which means an ebb and flow of systems "checks". Of course you know this, but in Moira's case, her little system is going through its own checks and balances. That means she has spurts of progress, followed by setbacks. I think in autism it is just more pronounced than in kids without that challenge. Probably, some of it, she needs to go through, and as much as it hurts to see it, it is part of her equilibrium, her balance. That doesn't mean you shouldn't protect her from herself -- of course, you should. But some of what you must do is observe, and allow her to go through her difficult behavioral spurts.

The same goes for your emotional pain in the grief process for your friend. "Grief work" has been intensely studied, and you may have read Kubler Ross. What they have discovered is that the grief process is not always linear, and in some people it never resolves. There are painful memories that are too hard to bear, and too hard to let go of. If you feel guilty, that is common, and you may relive those things over and over your whole life. But it does dull. It is always there waiting for you, though, if you let yourself go there in too intense a manner.

You work hard because you know what you have to do, and you are not one to shirk your responsibility. I wish we could control the behavior of others, but we can't. I always have the optimism that maybe by "modeling" good decisions and good behaviors to others, they will see the positive results those things bring and maybe follow suit. But, often I am disappointed. Everyone has their own journey, and I think bad decisions are paid for at some point. Not always, but usually. Another of life's checks and balances.

It is shocking about them trying to take Moira's medical card. Our healthcare system sucks bigtime. I get so irritated about the politicians' petty squabbles about "the debt ceiling", without having a clue what really goes on in real life for a lot of people. It is always the most vulnerable and those most in need who get hurt.

Hang tight, Jess. As painful as life is, all your hard effort and painful experiences will pay off in the long term. Life always seeks equilibrium, and nothing stays the same forever.

Ft

newwings

Jess, I haven't any real words of comfort, because, here I am, grateful for my sobriety but I've had a pretty cushty life so far in the grand scheme of things.

I too, lost someone close - my sister. I am eaten up with guilt for having to move 5,500 miles across the ocean from the UK to the US at the time of her diagnosis. I was in the US when she died a few months later, so there was no real goodbye or closure. One thing I've realized is that whilst I thought I was grieving for her, because I was drinking, it never really followed the normal healing part of grieving. So here I am, sober, and starting my journey of her loss all over again. It hurts, but it's REAL. Sometimes I am mad at myself for escaping for so long without dealing with it and I wonder if it will ever go away. I guess it won't - but it's work to be done.

I found a quote that helped me. I hope it does for you, too:

'We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way.'
~Author Unknown

NVRAGAIN3PCT

Jess- athiest here too.

Your post to me made me cry. I forget others struggle like we do. I love him so much. He's a genius if I could unlock his brain. At 7 he alienates kids but adults love him. Days like yesterday I can't take much more

I thank you for being here and understanding. I can't stop crying now. How will I do this clean.

Lordy one month and still a mess.

Hang tight.

Yes - we are special

MalcolmBliss

My son is only 2. He does not talk, or do the normal things a 2 year old does. We've enrolled him in a special needs course so that he will not fall so far behind, that it's harder to make him better later on in life.
The initial diagnosis was mild autism because of the way he get nervous around other kids and people he doesn't know, but we've cast that aside, for now.
I hope you are feeling better soon. I feel the weight of my friends death everyday when I wake in the morning, but somehow I manage to pull out the funny things. Like how we used to eat a bunch of hot wings during a ball game and have farting contests.
He always won. LOL!
Hang in there.
-Malcolm

iliveforyou

I'm still here everyone...I will respond to everyone's newer posts sometime tomorrow

Much love
Jess

iliveforyou

Hi FT,

Wow you always have a wealth of knowledge and I learn so much from your posts. Hell, I can learn something from everyone's but you have something real special. You were the sole reason I stuck around in SR and oh boy, I am thankful that I did.

I know that Moira has to go thru some setbacks in between progress but damn it is SO hard to watch it. It hurts to watch her constantly stimming and I can't re direct her at times. Having to physically restrain her when she has a meltdown hurts deeply. When she tried to bang her head in the floor or wall, biting, kicking, hitting, punching. I end up in tears as these episodes last at least 20 mins. If they take away her medical card I have NO access to get therapy she desperately needs. Behavioral mod and speech are the biggest ones.

I have been wondering why this pain cuts deep as a knife after all these years of Daniel passing. I know I couldn't have done anything to save him. He was as good as dead when we met. But I got to emotionally invested because I loved him...deeply. I saw past the alcoholism. I saw a beautiful, wonderful, sweet and talented man who I quickly fell in love with and soon after realized he was my soulmate. Part of a song he dedicated to me, "This world was never meant for one as beautiful as you"///feels like a lyric that suited him. I'm not sure if saying goodbye would have even mattered. I felt it deep in my soul when he passed, that's how close we were. Anyways I am sorry that I am rambling, again.

Yup. I work hard because it is my responsibility. Most don't understand how I do everything and homeschool. I feel this is my calling. It's exhausting and frustrating but incredibly rewarding.

Thanks for the hope my friend

iliveforyou

Thanks for the support and response newwings Just you responding is a comfort to me!

Everyone has different life circumstances, I just happened to get completely f*cked over with mine beginning at 2. But it is what it is, you know? I just have a lot of stuff to work thru that I masked with drugs and alcohol for 10 years, trying to run from the pain of my childhood and all the darkness in my mind. Yah, didn't work out so well lol.

Treasure that sobriety! How many days are you at? Congrats either way. It is no small accomplishment.

Wow, I am sorry you lost your sister *hugs* Not having closure is one on the hardest things I am dealing with. I hope you find a way to come to terms with her death

Thanks for sharing the quote!

xo
Jess

iliveforyou

Hey NVRA - Believe me, I know the struggles all too well. I also wonder how in the hell I am going to do this, all of this, clean :\ It takes great strength, determination and love to do what we do. I homeschool my daughter as well as being a housewife and taking care of Moira in general. Between my appointments, and all this stuff, my life seems to overwhelming. I look into my daughter's eyes and realize she NEEDS me. She depends on me...for everything. I cannot do anymore selfish crap that could take me away from her. If something happened to me my husband would lose his mind. He has NO damn clue on how to handle to stims and other behaviors. Sadly she'd end up in PS (which is crappy here in this part of Chicago) and not get everything she really needs. I must get myself healthy. I deserve to heal from my extremely abusive past and my drug addiction so that I can truly give my daughter a great gift - a healthy mother.

Too bad we don't live closer. Sure would be nice to know an Autism mommy. Not to mention an atheist one!!! LOL

When you have a bad day, write me! If you would like you can call me. Don't offer that much lol.

Take care of yourself mama

xo
Jess

iliveforyou

Malcolm, That is awesome that you are on top of things and getting your son the help he needs!!
Unfortunately our circumstances and state insurance together created a great delay in Moira getting her diagnosis. Sucks dealing with state insurnace only and now they want to take it away. I will fight tooth and nail to keep it. My daughter NEEDS it for therapy. Without it, she gets nothing.

LMAO Love the farting contests hehe that made me chuckle this morning

Thanks for you responses and support. I really appreciate all of you

xoxo

Jess

FT

Hi Jess,

You never ramble, kiddo.

How's Moira this week? Hopefully she has swung the pendulum back into a better rhythm of more positive behavior. If you think about it, we all regress at times, even as adults. I know that when I am extremely fatigued, stressed, or whatever, my mood sours, I snap at people, and I have even been known to go off somewhere and cry. As adults, we can control how far we go with letting things out, so just imagine how far a child without any control is going to go.

Just because stuff makes sense doesn't make it all that much easier to tolerate.

I just hope you get some breathing space this week.

Take care, Jess!

FT

NVRAGAIN3PCT

Jess- thinking of you.

Stay strong.

Hugs

Thank Carl.

Thank the Universe.

northernlight29

Hey jess...I just wanted to know how things are. Get back to me here, PM, or FB.... xoxox

BullDog777

when i was 17, i lost my girlfriend in a car accident. we had been together since we were 5. almost never a day apart since we were in kindergarten.
a day after her accident, i was holding her hand when she died.

we were gonna get married after high school, we had a great future ahead of us and in the blink of an eye, it was all gone.

that was 20 years ago and i still think about her every day.

i will say this... no matter how hard you work at therapy or healing, death is never something you ever get "over" -it's just something you learn to live with.

i have my good days and my bad days and that's OK too. don't begrudge yourself those sad days. you don't stop loving someone when they die. i'm happily married now, and have been for 10 years, but i still love Marie-I always will. and that's OK too so don't be so hard on yourself.

as far as the autism, my nephew was when he was younger. i say was because there's no way to tell now he ever was unless you take him to a really noisy place. you can tell that still bothers him a little. in all other respects, he's a normal 8 year old kid.

my brother applied for and got state help. he got a 1 on 1 case worker to help his kid 4 or 5 days a week for something like 5 years. he never spent a dime and it really made a huge difference in his life. you might want to look into it. California has an awsome program for kids dealing with autism. i'm not sure about where you live, but maybe it's something to look into.

hope you feel better soon.