Heartbroken...again

[rose481]

I need to pour out my heart somewhere and I really have no where else to do so. Our oldest daughter and son in law adopted a new born baby boy 20 years ago. As he grew, we knew "something" was amiss, but what we didn't know. Then daughter and sister in law were notifed that there was a 2 1/2 years old half-brother available for adoption...were the interested. They were advised there were some "issues", that ear infections had delayed speed and there was some hyperactivity, but the little guy had been shuffled around...and so we welcomed him with open arms. Months later, the issues were diagnosed as Fetal Alcohol Syndrome (FAS) and now we also knew what was probably amiss with the older brother.

There have been hours of counseling, thousands of dollars worth of treatment/medications, IEPs, etc., etc. The younger boy spent a few months in an inpatient facility to try to regulate rages. Tonight the older has been admitted into a facility to try to regulate his medications in an effort to calm his outbursts/rages. These are not little boys any longer and they can create havoc and are capable of a great deal of damage, to material things, but to people as well.

My dear God...how does something like trying to have a family, give two little otherwise unwanted children a home bring such utter turmoil and heartbreak? How do families survive this...what does the future hold?

 

[HMBgal]

I'm so sorry you're going through this. I certainly have no answer for your poignant question. Love is the answer, it always is, but trust me, I know how simplistic that is. Sending you hugs and wisdom for your journey. And no, it sure doesn't seem very fair for children to suffer for what their parents do/did.

 

[BusynMember]

Hi there and I'm an adoptive mother as well. One of my children was exposed to both drugs and alcohol and had some rough years. He has autistic spectrum disorder and fortunately dodged the Fetal Alcohol Syndrome (FAS) bullet. God only knows why some kids dodge it and some don't. You can work with autism and my son is now twenty and doing quite well. Fetal Alcohol Syndrome (FAS) is different and I read a lot about it because when we first got him we didn't know if he had fetal alcohol spectrum or not so I wanted to learn all I could.

From what I read and plus a clinic I took him to in Chicago, which specializes in Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE), I learned that drinking alcohol while pregnant CAN (not always) cause organic brain damage which, if due to alcohol, is Fetal Alcohol Syndrome (FAS) or Fetal Alcohol Effects (FAE). There is no real difference between the two other than with Fetal Alcohol Syndrome (FAS) you can see certain facial characteristics and with Fetal Alcohol Effects (FAE) the kids look normal.

Fetal Alcohol Syndrome (FAS) kids tend to have swiss cheese thinking, whereas they may know how to read one day and forget the next day and they may not retain what they are told. They have a limited ability to reason and, even after being arrested and told why they were arrested, they often re-offend because they didn't make the connection. It is not their fault. It is not behavioral. It is not fixable by medication, although sometimes that helps with the hyperactivity and the crazy moodswings. From the last book I read about Fetal Alcohol Syndrome (FAS), which was more up to date, they are learning that the adults who have Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) are relieved to know why they can't seem to fit into the world well. The diagnosis makes them feel better.

The best way, again according to this book (I wish I remembered the name of it) to treat adults with Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) is 24/7 care in maybe a group home so that they can be monitored and not get into trouble. Although they may not understand what they are doing wrong or why they are in trouble, they get treated like "normal" adults and can get arrested and go to jail and it really isn't going to do any good.

How do you have a family? You have a different kind of family. I have adopted three children and I feel that they were the ones God wanted us to have. Not everyone is religious or feels that way, but that's why I feel we ended up with these three children. I do not, however, see my children as unwanted. Many adoptive parents may have adopted them, not just us. We just happened to be there when they were there and we needed each other. Your grandchildren need you, in spite of their disabilities.

Your grandchildren are not being defiant to ruin your lives. They can't help it. Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) is always a risk when you adopt children of unknown background. When we adopted our daughter, we got to know the birthmother very well and knew she was not alcohol affected. When we adopted our oldest from Korea, we took a chance. She does not have it. The child we adopted from foster care was born with cocaine in his system and we were told this. We pretty much figured that if his birthmother didn't say "no" to cocaine, she was unlikely to turn down a drink either. This particular child of ours will always be wired differently. We knew that would be the case.

I am really sorry you are so sad. I wish I could give you a hug. Encourage your children to get outside care for both children because they will not do well on their own and your kids need a break and so do THEIR kids. There is a lot of good assisted living out there. Even if your grandson has Fetal Alcohol Syndrome (FAS) and a group home sounds like a horrible life, it probably will be comforting to him and allow him to live as happy a life as he can with lots of help and supervision, which he will need.

I hope you find peace and give the care of these special children to caregivers so that you can all go on living your own lives, feeling good that the kids are well taken care of.

I find this article about a place in MN that helps Fetal Alcohol Syndrome (FAS) adults. It's a good, informative article about Fetal Alcohol Syndrome (FAS) adults in general:

http://minnesota.publicradio.org/display/web/2007/11/15/adultfasd

 

[recoveringenabler]

Welcome Rose. I am so very sorry you are going through this with your grandsons. You're absolutely right, surviving this is a heartbreak and it is filled with all kinds of devastation. Here on this site we are all at many different stages of this process, from the horror of it to acceptance and everything in between.......a long journey. No one deserves this, no one knows how to handle it either, we take it one step at a time and for most of us, we seek professional help. It is exceedingly difficult to be on our own through it. I would suggest you and your daughter and sister in law seek support in therapy, groups for parents who are dealing with what you are all dealing with. NAMI (National Alliance on Mental Illness) has chapters all over, you can access them online. They offer very good support groups for parents and information.

I wish I could answer your questions Rose, but I can't. I don't know why some of us go through this, I don't know what the future holds for you and your grandsons. All any of us can do is find the support we need, learn the tools we need, get information, put one step in front of the other and pray. We find answers, we find our way, we figure out how to do it and hopefully along the way, we learn, we grow, we find some grace and learn to live a healthy joyful life along with all the chaos and heartbreak.

I hope you keep posting, it helps to vent, it helps to throw out all our feelings and get heard by others who are in the same boat.......we're here for you if you want to stay around..........we really do get it. Sending you a warm hug and many wishes that your family finds its way to peace of mind.

 

[Liahona]

Welcome. This is a great place to vent. I think watching what my sons do is harder for my mom than it is for me. She feels very helpless and has the time to process the emotional impact they are having. I am in the middle of everything and have things I can do to help the situation.

 

[ksm]

I understand your grief... you hurt for your daughter and your grandchildren. I am in a similar situation, but we adopted our granddaughters when they were 5 and 7. Their biomom has big addiction issues and bipolar. My son had situational depression after undergoing spinal fusion surgery at age 28. When the kids ended up in the foster care system, neither parent was able to parent. The oldest daughter has some issuses that I believe are due to alcohol and drug use during the first 5 months of the pregnancy. I don't have a "true diagnosis" of FASD but her behavior sure fits the FASD list.

I can't say are people survive this... but they just do. Try to be available to your daughter and son in law. Give them a break once in a while. Tell them how proud you are of all they have done... even if it doesn't look like what most people would call success! They have my admiration! Do the boys act better around you and your husband? Can you take them out for a meal, have them over for dinner? take a short weekend trip? My difficult child seems like a perfect child around others.

Good luck and hang in there. KSM

 

[rose481]

Thank you all for your responses. I admire each of you greatly and I so appreciate your willingness to reach out to someone you have never, and will never meet, with words of comfort and encouragement. daughter has educated herself well but as previously stated, it is sometimes not only a day to day issue, but moment to moment. Exhausting isn't it? GS had a good night at the facility...he hasn't been away from home at night for 3 years, as he "roams" at night and gets into trouble...home is like Ft Knox, but sometimes he "breaks" out. A group home is part of the discussion, he still is eligible for one more year of high school and daughter & sister in law wanted him to finish at home. Getting waivers and such for group home eligibility is such a struggle here...the list is so long, but I really think he would be happier in one. But his rages and his habit of night "roaming" are issues which would affect the type of facility he needs and the location of such a home might not be local.

Again, thank you all for your kind words. I think I may have found somewhere where this heartbreak is understood!

 

[BusynMember]

Please keep posting. We'd be happy to "listen" to you

 

[Liahona]

It might hurt more at first but sometimes not local can be beneficial. I hope they find a good fit for him.

 

[rose481]

Just a brief update...DGS is still in the facility. They are going to try to adjust his medications...hopefully if nothing else during this time daughter & sister in law will be able to sleep a few nights without one eye open. The younger DGS got very upset this am and missed his bus. He was angry because daughter washed his jeans...why do these kids "like" dirty clothes? Does anyone else experience this? Getting this child (16) to shower and change clothes is a continual battle.

 

[BusynMember]

Maybe it's sensory issues and the dirty clothes feel softer than the washed ones? Just a wild guess. With difficult child's it could be anything. He likely doesn't know himself.

As for showering and the hygiene bit my autistic-spectrum son is still not good about that? In his case, he just doesn't care that much about how other people perceive him. I have to say, nobody ever says, "You smell" to him and he has a lot of friends at work, but he does sometimes smell a bit ripe when he's around me. We won't even go into brushing teeth.

I think these kids are differently socially and while they may have a desire to be accepted and have friends, they don't have ENOUGH care to do t he things that typical people demand in order to have friends. A lot of them are just fine being alone. My son is too old for us to wash. When he make him shower, we don't know if he really gives himself a good washing or just turns the shower on and sprinkles water on himself. And if they don't care, by the time they are adults you can't do much about it (shrug). I always chose my battles carefully and worried more about the big stuff than the little stuff. In general, our son has done very well, considering his birthmother used drugs and drank while he was not yet born and he was at a disadvantage from Day One. Can't complain too much.

 

[rose481]

DGS came home from the in-patient facility Saturday. He says he doesn't want to go back there. daughter met with someone from the state regarding waivers and possibility of group home placement. He may get his waiver in October which will allow more respite care and possibly some day services once he is out of high school, but the availability of a group home is down the road quite a way. You know how it is, we can support people who aren't even our allies overseas, but we can't take care of our own kids here at home. (Sorry...soapbox hijack!)

There will be "honeymoon" period in daughter's house and gradually, I am afraid, his behaviors will return. I just keep praying.

 

[rose481]

Well so much for my prediction of a "honeymoon" period for DGS upon being released from inpatient facility on Saturday. daughter said he had a small "melt-down" within 24 hours and Sunday a major one. She is calling doctor today, as DGS is not scheduled for a follow-up for two weeks. How can his medications have been adjusted enough to see the effect in as short a time as 5 days...and no blood work. Seems too quick to me and how do you check levels of drug or drugs and their combination without any blood work? Thanks for reading.

 

[Liahona]

Sorry there wasn't a honeymoon period. With how fast you can notice a difference with the medications depends on the medications. Some take weeks to work and others take hours.