When the long term future for your child is very bleak....

[pepperidge]

What do you do? how do you deal with it? practically? emotionally?

I am finally coming to see that many of my youngest's cognitive, emotional and behvarioal issues are tied to fetal alcohol. the more I read the the more I am coming to realize unlike for my oldest son whose mental illness is being more or less successfully treated, the organic brain demage isn't going to go away,either by medications or anything else. Inpart I guess we have been dealing with mostly mental health type professionals who have more the orientation of being able to "fix" things through medication and/or theraphy and who perhaps don't have the expertise in more of the fetal alchohol issues. It is so hard because as you all know, evrything overlaps, there are huge co morbidities and little clarity in the childhoodl mental health field.

It has really hit me in the last few days that he is at high risk for all sorts of bad behaviors, probably won't be able to function without close parental oversight well into his twenties if not beyond, am not sure he will graduate high school much less go to community college etc. He is of normal intelligence, but has much of the rest of the fetal alchohol baggage including a lot of cognitive issues.

I am very sad for him, sad for our family because his behavior makes "normal family life" difficult, sad for me cause I was kind of counting on getting my life back at some point, among other things and having my children grow up to be a little less difficult child some day ( I can always hope (lol), and do especially for my oldest). but my youngest, it seems like many of hte issues we are seeing now aren't something he is going to grow out of, therapy is going to dramatically change from all that I read. As they want more independence the discrepancy between what they they think they are ready for and what they can really handle must get wider and wider and the battles get bigger and the stakes larger.

For those of you with very 'challenged" children who don't seem to have much hope of whatever might pass for a normal, independent, productive life, does it ever get you down, espeically when they superficially pass for "normal"? how do you cope? how do you plan for the future when they might not be self-supporting emotionally together enough individuals--yet they no doubt think they are and am sure will want to live their own life.

The future looks pretty bleak to me right now, and we haven't even gotten to the hard teen age stuff yet. I know I will keep looking for professional help--I am going to be looking for more specialized help if I can find it, but I feel like I am in way over my head, depressed about the way I see it defining the rest of my life, very sad for my son.

Some of you I know are dealing with similar issues it would seem, I hope to learn from you.

 

[timer lady]

Pepperidge,

wm, in particular, has haunted me for a long time. I never see him living independently; I'm having more & more doubts about kt, even with her gains in life skills & such.

However, for the most part, I'm past the depression - the despair. I'm already searching for transitional living programs & adult group homes for the tweedles. Have been for a year or two now.

And I have to remember, this is nothing that can be fixed; it can be tweaked & fine tuned, but when dealing with organic brain injury & such there is little but skills training & supervision.

In the end, I hope that some of the love & values we have worked so hard to instill in the tweedles will shine through. That they will not have the need for the level of supervision for which we are preparing.

We are working through this with our assigned county mental health case manager & our CADI (community alternative for disabled individuals) manager. These 2 people are the ones we turn to for help with resources. Our CADI manager, especially, is looking ahead & scoping our ideas that we had no idea existed. I believe that she has kt & wm on waiting lists already.

It was only after beginning that kind of research & seeing an "actual" waiting list was I able to process my true feelings over this & work on the positives. Be able to enjoy kt's delightful sense of humor & wm's very intelligent & curious mind.

As your difficult child is, what 9 y/o, it's time to do that "prepare for the worst & hope for the best" thing - then it's time to start enjoying the child you have. The parts in that child that delight you & fill you with joy. Even if you have to look deep to find those parts, because I know there is something there that fill your heart with love for your child.

Take care of yourself. The daily grind of our little wonders can tear the spirit down. Find that one thing daily that is yours alone; that is therapeutic or spiritual or whatever , that gets you through the day.

 

[daralex]

i can't speak to it first hand, but my best friend's son had a stroke at the age of 3, doctors said he would never funtion correctly and I can tell you at the ripe old age of 24 he is in a college and trying to obtain certification to become a priest/teacher. She always taught him he could do anything and he ran with it. Yes, a million accomodations had to be made for him through school, and it was a struggle. I'm not trying to give false hope - but the theme is to teach them they can do anything and they will believe and so can you. Not always plausable I know! - but hang on to hope while living in reality. As said before - plan for the worst and hope for the best - sometimes you'll be surprised - and if not know that you have a plan to cover it when you've tried everything else! i worked in a long term care facility that housed kids with the need for long term care for a little over 5 years - I've seen kids with no brain stems laugh (appropriately!!)! You never really know what they're capable of - be supportive and hang in there, they may surprise you! If not you know you've planned for the worst case scenario and either way they will be where they need to be. My thoughts and hope goes out to you!!!
-dara

 

[DammitJanet]

I have a 26 year old that has taken longer than most to finish cooking. He isnt quite there yet but we are definitely seeing huge strides in the past 8 or so months. He is what I would consider an Aspie lite. He doesnt have any huge behavior problems but has definite social deficits and almost crippling anxieties. They are getting better and he is gaining some confidence in himself. He still thinks he knows all about everything though...lol.

I still have no clue how long he will be here and cant wait to get everyone out of the nest.

 

[slsh]

Pepperidge,

I'm "lucky" in that we started having to face this idea with our oldest long before we were hit with the possibility that thank you also may require life-long supervision. It's a famililar path to us now, but certainly never easy.

My best advice to you is not to look too far down the road right now. Yes, you have an inkling that perhaps independence may not be in difficult child's future, but ... it's not written in stone. I always expect the worst - that way if it happens, I'm prepared and not surprised. If it doesn't, I feel like I won the lottery!

For us, it seems we cruise along fairly well for a while and then the "differences" really hit hard. Milestones have always been the hardest - I remember last spring following an ambulance with Boo up to a hospital in the city, getting stuck in horrible traffic on the freeway, and there was a limo next to us with prom goers. I just sobbed. He should have been going to *his* senior prom (not that they have one for "those" kids), but instead we were schlepping up for another admission.

The grief comes in waves, then goes, then returns. It just is - I do think it's easier to embrace and deal with the grief than it is to fight it.

I've kept my ears open for years about services or programs, both for Boo and for thank you. Haven't done anything with the info yet but if/when the day comes, I at least have a starting place.

A gentle hug to you. It's a really hard thing to have to face and unfortunately, I think we have to face it over and over and over.

 

[Fran]

The statistics for my son's affliction are very bleak. I remember the sinking feeling I had when I realized those statistics were speaking of my son.

I know that he isn't ever going to have the life his easy child brother has or the one I had. Once I mourned the person I had hoped he would be and mourned my "failure" as a mother to fix him I took stock of what we had going for us.

Living a life that isn't what we call average independent doesn't have to mean a wasted life. I came to accept that difficult child will probably always need some sort of umbilical connection to someone. We worked on keeping him as close to his peer group as he could handle. We nudged him in areas where he didn't realize he should go.(driving, life plans, work)

I feel difficult child can hold a job under the right situation. I think he could live on his own with the right supports and I think he can marry in the right situation. It took me a long time to appreciate that it doesn't have to be our way or no way to live a life. There is something in between.

My goal is to get difficult child to the fullest life he can lead. I'll take that. My disappointment will be if he sabotages himself into having no choices but living a meaningless life.

I know this feeling, this realization that nature gave our certain difficult child's a deck that is stacked against them. Our jobs as warrior moms is to work with what they have and give them what they need.
Hugs and shared tears. Look for a light regarding difficult child and follow it.

 

[crazymama30]

I worry that difficult child will live independently and make very poor decisions. I realize I cannot change this, and I do not think about it too often, if I can. I just hope that once he is 18 he will realize the medications do help him and continue to take them. Or go off them under a psychiatrists supervision, if he so chooses.

My biggest fear for difficult child is that he will end up like his paternal uncle (who everyone says he reminds them of). His paternal uncle is a statistic. He comitted suicide. I believe he was undiagnosed something, but I really do not know what. husband, difficult child's dad, had a huge drinking problem, spent much time in jail for assault, and had multiple duii's. I want my son to avoid all of that, and live a long and happy life. I could care less if he pumps gas or is a doctor. I just want him health, physically and mentally.

 

[BusynMember]

I long ago, as early as when we adopted our son at age two, realized that we may be taking on a child who may not be independent. Statistics on children on the autism spectrum living completely independent are very low, and, frankly, I have decided that you can have a very full, happy life and live with some help. In fact, my son will probably be 80% independent and need some help with reminders about life skills and perhaps will do best in a sheltered workshop job. And he'll be happy doing it, unless he really changes! What WE want for our kids is not always what they want for themselves. My son was a very tortured toddler, but has grown into a young man comfortable in his own skin, although he realizes he is different. We are going to prepare him to be independent, as independent as he can be, and play it by ear. If he needs assisted living, so be it. There is nothing he can't do if he is in assisted living. He can still work, marry, do his thing, etc. He is so much more functional than he was when we first got him though. I really can't put a definite limit on his abilities yet. But whatever life he lives, he has it within him to be happy. That's what I want the most for him.

 

[trinityroyal]

About 3 years ago, husband and I finally faced up to the reality that difficult child will not likely be able to live a "normal" life. Strangely, I found it to be a freeing moment. Instead of having all sorts of interventions and programs to try and make difficult child more "normal", for the last couple of years we have focused on putting the supports in place that will allow difficult child to live his own life.

I still have moments where I mourn for the life he might have had, I think that's more about me and my dreams than about difficult child and his dreams. He seems happy in his life right now.

difficult child will probably never be able to live independently, but he will have all the supports he needs in order to live as independently as he chooses. He is making the transition from therapeutic Residential Treatment Center (RTC) to adult assisted living, and he seems very excited. He still has 24/7 staff support, but it's much more like "his own place" than like a group home. difficult child may never have a job. But I'm trying to learn to stop wanting that for him. difficult child seems happy for the first time in his life, and I'm learning to be happy with him and for him.

Trinity

 

[meowbunny]

Fetal Alcohol Effects (FAE) is not the end of the world. As was said, he can live a life that suits him. It may not be the choices you would have made for him, but it can be a good life. The good thing is you have time to find what is available to help him transition into adulthood. He may never be fully independent but he can have a rich, full life on terms that work for him.

It is okay to grieve the loss of what could have been -- I think we all do that. When we got our children, we have dreams of their future. As we see their issues and problems, our dreams fade. Slowly, we develop different dreams. Not what our friends with the college-track, career have, but ones where we see our children being happy, possibly productive with interventions. We'll be on the sidelines cheering their every step and we'll be here cheering the steps of our friends' children.

 

[Wiped Out]

Pepperidge,
My son is 10 and we know that his future will probably not include completely independent living. In addition to everything listed in my signature about difficult child I'm fairly certain it also includes Fetal Alcohol Effects (FAE). It's a long road, not one we necessarily bargained for.

As others said, we hope for the best, plan for the worst. We too need to start checking into what will help him most with his future. Right now we're just having trouble finding the right middle school.

Gentle hugs.

 

[Marguerite]

We can worry that our child will end up like the undiagnosed tragic relative who had no intervention - or we can get on with managing, day to day. Planning somewhat into the future in case our concerns come true, in terms of their inability to live independently - that is sensible. it takes courage to do this and it also takes facing our grief head-on.

But always remember - you have given this child every chance to develop to be the best they can be, even if that 'best' is not that much. They have been already given a great deal more, than that undiagnosed tragic relative.

My adopted nephew is a mess. My sister was told he was "retarded" when she got him, because the mother was "diminished responsibility" and he had been handed over by his grandmother. As he grew we could see physical problems, but he certainly seemed sharp enough - so sharp he could cut himself. He was also profoundly dyslexic.
With hindsight, we wonder what else should have been diagnosed.

My sister worked with him, she fought for support and understanding, she had a terrible time. Her husband was not supportive - when her son found out that he was adopted, he said, "Thank goodness. Now I know that ***** is not my father, I am so relieved."
He's been in prison. He's been on drugs. He's been on the streets.
But he has come home again.

When he was 12, my sister had him re-assessed and the people there told her, "We can't help you any more. You've already helped him achieve more than we ever thought possible. That he can read at all, is a miracle. Don't expect him to also write neatly, or with correct spelling. Everything beyond here is a bonus."

She did everything she could, and he still had problems. For a long time she blamed herself for not making his life perfect, but we told her, "At least he HAS a life. If you hadn't adopted him, what would his life have been like? Would he even be alive?"

And as I said, he has come back. He's made a mess of his life but is finally realising that his mother has been his best ally. He's quit the drugs, he's trying to help his own kids with their problems and is doing the best he can with what he has left.

He's not a success. But he is alive, and functioning positively now after all these years. And if it hadn't been for my sister, it wouldn't have a hope of being this good for him.

I was given a ball of wool which was being thrown away. It had moth holes in it. But I didn't like to see the wool go to waste, so I made a scarf. Maybe if it hadn't been for the moth holes, I wouldn't have had to tie so many knots in the length of wool. It might have made a prettier scarf, although the little knot ends give it character. It could have been a longer scarf, but it'll do. As I knitted it, I removed any moths I found and cleaned the wool. I put in some effort to turn a discarded ball of wool into something useful. Maybe if it hadn't been damaged, I could have done a better job. But at least I did it. A scarf of sorts is too good to throw away.

Marg

 

[BestICan]

I thought I wouldn't have anything to add to this discussion, but then I remembered my cousin J. She's in her 40's, has a job, a roommate, sends and receives lots of emails, swims with the special olympics, and lives in a sweet little apartment with 24/7 support staff. She is blind and developmentally delayed. Obviously I'm not her mother, so I never experienced the mommy heartbreak. But as her cousin, from a relatively objective viewpoint, dang, she's very happy with her life and would probably laugh if I suggested she's missing out on something.

As her cousin, I went to her moving "shower" - the party her family threw before she moved out of the house, when she was in her 30's. I cheered for her (long distance) when she swam in her swim meets. I listened to her talk on the phone about her favorite sports teams. I exchange emails with her. I'm one of many, many friends and family who do the same. I guess what I'm saying is, from my standpoint, she's perfectly happy and reaching higher than I ever imagined. Based on the little I've heard from my mom, J's parents had different plans for J, but eventually those plans morphed into what she has now. And by the time I was old enough to see it and understand it (I'm remembering the moving "shower" specifically), all I saw were two very proud parents.

Hugs to you!

 

[1 Day At a Time]

Best I Can and Marg,

I found what both of you had to say to be very inspirational! husband and I are struggling mightily with this issue right now. Maybe, I should say that it is mostly me who is struggling.... I see progress though, I am more and more at peace with difficult child, who he is, and where he is going.

Your story about the ball of wool is so true , Marg. There is much peace in acceptance and planning for the future. It's all in the point of view, isn't it?

 

[pepperidge]

Thanks so much for all your stories and support.. I know some of you are struggling with far worse than I deal with.

What's hard for me in part is the unhappiness and struggles of my son. If he were happy but limited and we could find suitable interventions there would still be the grieving and adjustment, but I would feel we were successful in helping him live his fullest life.

But with the spectre of drug& alchohol addiction a real possibility, extreme impulsiveness, his own knowledge that socially he is being marginalized, his own aspirations and the reality of what he can accomplish, and the reality of the hand life has dealt him, there are so many challenges. I think that is in part what makes life so difficult with our kids. There is only so much one can do to keep the self-destructive impulses at bay, yet the stakes are enormous. I need to do a better job of enjoying the good qualities--though I have to admit in early puberty here they are sometimes obscured.

For us it the future is not yet clear in terms of what kind of support will be needed, but I feel I have a different mind set now about the future, a new set of things to investigate. And that as some of you have said is liberating to some extent.

I feel like we need to find someplace to go to where we can find someone who is familiar with the difficulties of medicating Fetal Alcohol Effects (FAE) children, psychologists who may have some usefully guidance on dealing with the behavior challenges, and perhaps social workers or whatever who have some guidance on managing the long-term care issues. Does such a place exist?
It doesn't here locally, that's for sure!

It is certainly much more than I ever bargained for in becomng a mom. I have to say, I was pretty naive about the whole adoption things. Despite having done lots of research on the adoption agencies we used, one was closed down for falsifying records and lying to adoptive parents and the other admitted to us they did not give us the whole truth. But that is very much past history.

What matters is now, and here I am, along with you of all, warrior moms. Sometimes I feel the weight of the responsibility being the advocate for my children, in a world where our knowledge about what's right and best for them--much less the ability to access it -- is limited.

Sometimes it is a bit overwhelming, isn't it? but we go on.

Thanks again.

P.

 

[Nomad]

Would like to delete.

 

[Hound dog]

P

You're post touched me deeply because it wasn't so very long ago when I was where you are. Take a look down at my signature and read my son Travis' dxes. Quite a bit for one young man, huh?

Well, I can tell you that when Travis was about 13 I saw no hope of him living independently. None. Intelligence had nothing to do with it. The boy is highly intelligent. But at 13 he also was at the developmental age of a 5-6 yr old child. And their were cognitive disabilities, visual disabilities.....

I'd gotten thru some of the worst times of Travis' childhood simply by counting down the days til he'd turn 18 and I could have my life back. Don't get me wrong, his childhood was not where near all bad, but he was definately a kid that challenged me every moment of every day.

Then the realization that Travis may never be able to live on his own hit. And I nearly went over the edge. My heart was broken both for me and for him. I grieved horribly. I grieved for all the hopes and dreams I had for him, as well as the ones he had for himself that would never become a reality.

But acknowledging the reality of who Travis really is, and letting myself grieve for who he would never be allowed me to accept my son more completely than I'd ever done before. I'd spent his whole life doing everything within my power (docs treatments ect) to help him be as "normal" as possible. And it was a bitter pill to swallow when I had to accept that Travis will never be normal.

A bitter pill for ME to swallow. Not Travis.

From then on it was as if the blinders had be removed from my eyes. I began to accept my son for who he is. And while I've always loved him dearly, I found that I could love him even more.

That doesn't mean I stopped trying to help him be the best person he could be, it just means I stopped trying to make him be normal. Travis is not normal, and will never be normal. He is simply Travis.

And then, as Travis has done all his life, he amazed us. I never thought he'd manage to graduate hs despite his IEP. But he not only graduated hs but also a tech school that had taught him how to repair computers (A++ training). All through hs I watched him inching closer and closer to his peers.

After hs he was let down because the state won't modify the certification test for the computer. So he couldn't take it. But he still wanted to work and got a job. He couldn't drive being legally blind. But while that was a particularly hard blow on him, he's come to accept it.

At 21 if someone were to ask me his development age now, I'd place him around at least 16 to 17 yrs. Oh, he still has many problems. Most will always be there.

But guess what?

He wants to go to college next fall. He's doing all of the paperwork and loan stuff himself with my easy child. He's making all of the arrangements himself to be given statis as a disabled student. HIMSELF!

And I and the whole family are cheering him on.

Now if you'd asked me when he was 13 if I ever thought he'd go to college I'd have not hesitated to say no. If you'd asked me if I thought he could live independently I'd have said no. You'd have gotten the same answer at 16. And at 18.

But at 21, I'm waiting for Travis to show me what he can do. Yes, Travis is disabled, both mentally and physically. There are tons of things he will never be able to do that we take for granted. But he has taught me paitence. He has taught me to be humble. And he has taught me to never underestimate him.

Don't limit him now at age 9. Realistic is great. We need to be realistic. But he has alot of years between 9 and 21 to surprise you. Keep pushing him to be the best person HE can be. If it's not "normal" so be it. If he needs help as an adult, you'll deal with it THEN. But that's a long way off.

((hugs))