FASD and grief

[Twinmom]

I think...well, more like I am sure as a mother but don't have an official label yet...that my DD13 has FASD. We have spoken to an FASD clinic and are going for an evaluation as soon as the paperwork has been completed. I'm an LCSW and intellectually I get it. I can accept it in my head. My heart, however, is following a different path. We've known all her life that she has difficulties but I've always believed she (and we as a family) can overcome them. We have sought treatment, sought God in prayer and believed that she could be healed. Now I see that this is not the case. We can make her life better, but healing is not going to come.

 

Static encephalopathy does not go away. This isn't an issue I can muscle through. Her life is going to be hard, forever...and as her protectors, so will be our lives. There is no way around it. The rest of the world will not understand, will continue to reject us and she will continue to fail to meet its expectations. As hard as we may try to teach her, she will continue to make moral and social mistakes and have to deal with the fallout. She will struggle academically and perhaps never go to college. People will judge her by her outward, normal and quite beautiful appearance and then will blame her when she cannot measure up. We will continue to be viewed as poor parents, despite our near heroic efforts to raise four drug and alcohol exposed children. This is our life, because we chose to love our little birds with broken wings.

 

It hurts. I know God can and will make beauty out of ashes, but it hurts. I don't want to be here. I don't want to do this. She doesn't, either. Today, I cannot see how I am going to make it through the rest of this child's life, not to mention what is going to happen to her when I cannot be there for her anymore. I'm sure others with FASD kiddos or other disabilities can relate.

 

Just needed to put that out there somewhere. Prayers would be appreciated.

[texasmama]

(((hugs)))  I don't have FASD kids, but I am an LCSW, too, and have worked with several kids who carry that diagnosis professionally.  I will offer hugs and prayers.  I believe that your children are with your family for a reason.  (((hugs)))

[SonshineMama]

I do not have a FASD child but I have a son who is a cancer survivor.  He looks totally normal but is horribly damaged.  Life will always be a struggle for him. The grief still comes in waves.  People think "8 years post diagnosis" that is awesome but every time a new struggle rears its head and he falls farther behind his peers, I grieve :(  

We continue therapy in hopes he will be able to go to college and live normally but it's just not known.   And I secretly fear he will never be ready for high school level work . . . 

 

I too know God has already made beauty from our pain.  WE'VE seen beauty from the pain.   Bbut it's still hard. . . a book that has been particularly helpful for me in this area is Randy Alcorn's deadline - totally not on this topic (it's all about eternity) but has a beautiful picture of down's syndrome children in heaven.   My son has an empathy and sweetness about him that is "special" the way downs syndrome kids are.  I have tried so hard to live for TOMORROW - as in heaven.  Knowing God made him for something special is just a huge help.

 

Yesterday, I was having a PTSD flashback to his concussion and flight for life experience (huge fall from tree that may be contributing to his issues along with the cancer - another unknown we will never have answers for).  I have long felt that God created ds for something really special but for the first time I felt like the Lord was telling me that the 4 times he almost died were Satan's doing and that God protected him from death .   I remind myself that God doesn't need special abilities or intellect that he needs people willing to be molded and changed by him.  Sometimes the weaker the vessel, the stronger God's power.  

 

That (above) is of course a good day, bad days I still sit and just weep for the pain.  Every . . . single. . . academic subject is a huge struggle for him.  I worry constantly that I'm not doing what is best for him (keeping academics short and sweet during the day) but then I remember his brain can only absorb so much at a time.    

When I think of what people will think, I try to stand tall and remind myself that it's what is INSIDE that matters. BUT there are days I just want a hole to crawl in and I want to scream "why him?  why us?"  

I will be praying for you 

[Tiramisu]

You will be in my prayers. I'm so sorry for your grief. :grouphug:

 

I have one who received a static encephalopathy diagnosis from two different neurologists. She doesn't have FASD. It may have been from unknown oxygen deprivation during birth or pre-birth trauma, or even something genetic, we don't really know. I was told that they put that very general label on when they know the brain isn't working quite right but they can't explain it.

 

The invisible things are tough. I get that.

 

God presented the opportunity to you to raise these kids, who are HIS kids, and you said yes to Him, willingly, with an open heart. You are now walking that journey he invited you on and it's a very hard one, but I know you will persevere. Nothing could be more beautiful, more heroic, more self-giving than you are doing. Your reward will come. Run the race.

 

:grouphug:

[rutamattatt]

Twinmom - I could have written your post nearly word for word.  

 

Our daughter is FASD, along with a myriad of other diagnoses.  I am with you - I GET IT in my head.  I have read the books, gone to the seminars, talked to the experts.  Cognitively, I understand to a competent degree what we are dealing with.  But living each day, moment to moment seeing the struggle, seeing the chasm between her and her peers, seeing her wrestle with frustration and the growing awareness that she isn't "right"...it is...overwhelming.  I understand what you mean when you say "I don't want to do this and neither does she".  

 

I am sorry you are dealing with this too, but purely selfishly I am so glad I found your post this morning.  I have been struggling to keep my chin up, to keep plugging along, while fighting back what I can only guess is the grief you are talking about??  We have no one IRL who "gets" it - many who support us, but no one really "gets it".  If you'd ever want to PM about it, please know I'd love to hear from another FASD mom.  It is lonely and it is sad.  

 

[Just feel the need to clarify that this post comes with the hopefully assumed - we love and adore our daughter and dealing with her challenges does in NO way change how we feel about her.]

[mamatohaleybug]

My DD does not have FASD but she does have static encephalopathy due to a serious congenital brain malformation, hydrocephalus and the horrible domino-effect they have had in her brain. She is beautiful, bright, sweet and funny. I have so much hope for her future, on the good days. But the good days are surrounded by the hard ones. I'm trying VERY hard to not fear for her or for myself. I'm trying to happily get through each day. It is so hard because I am afraid of what the future will hold. *deep breaths*

 

The grief comes and goes but it's always there. Just today I had to help her work through some fear (she had a shunt failure in April and has had a tough recovery from surgery). I hate knowing these thing will never get better. I send cyber hugs because while I, like you, chose this child, it doesn't make the reality of the difficulty of raising her easier. I would never not want to be her mama, I just sometimes wish it was a bit easier, especially for her. I'm really learning to trust God, I'm just a slow learner apparently. :blush:

 

I hope just knowing other parents get it helps a bit.

[Heathermomster]

My eldest sister was born with severe spina bifida and went through multiple shunts.  She went blind in 2nd grade after one shunt malfunctioned.  My younger sister and I were her caregivers growing up, and we love her very much.  A neurologist once looked over my sister's brain scan and could not believe she could speak or carry on an intelligent conversation.  The Dr. told my mother that he could not imagine the tricks she used to stimulate sister's cognitive brain functioning.  A sense of humor will take you far.  Anyho..

 

Trust the LORD.  Do not underestimate the effect your love, support, and sacrifice will have upon your DD's life.  Also, focus on what she can do as opposed to what she can't.  

 

For now, just take each day as it comes.  You are grieving, so give yourself some time.  When you are in a better mindset, address the long term issues associated with this new knowledge.  Blessings, h

[srs]

I just saw this today, but hugs and prayers for you. We also live with static encephalopathy, although for different reasons, and it hard some days to think about the "never getting better" part.

[Geo]

Twinmom,

 

I particularly appreciate posts like yours. The grief. The pain. Isolation and rejection. Who would WANT to drink from that cup? You may never see a big miracle, but I can't help but believe that you will see many little miracles. You're walking with her as far as you can go, she's not alone. You are Jesus-with-skin-on for her. She is blessed, and you are transformed into His likeness. Beauty for Ashes. I am praying for your family, and to be like you. <3

 

((HUGS))

[MerryAtHope]

(((Hugs)))  I'm so glad you posted. Grief like this can't be borne in isolation. I don't know why God has allowed your daughter to go through this, but I know every life has value to God, and he thinks your daughter is worth pursuing a relationship with, was worth dying for. He put her in a loving family so she could know him.

 

I know about crushed and broken dreams, though my journey has been very different from yours. My husband became disabled from chronic Lyme disease 13 years ago, and everything has changed. It affects his thinking, his ability to talk and read, to concentrate--he can't go to church with us because of chemical sensitivities and other issues. People run into him with shopping carts at stores because they are in a hurry and don't see that he isn't moving fast.

 

My children and I cry out to God for his healing--but we too see, that may not be in God's plans for my dh this side of heaven. Several years ago, I started changing my prayers and encouraging my kids to change too. We still pray for healing. But we need courage and strength and wisdom and love and perseverance to walk this road. And we need to see Jesus and to know with the depth of our souls, he is near. I wrote in my blog entry on Unanswered Prayers:

 

We do not have a benign paternal God who looks down from on High with occasional sympathy. We have Emmanuel: God with us. The God whose Holy Spirit has chosen to dwell IN us. Do we stop to think what this means? The God who lived through intense anguish in His life on earth, continues to choose to live through it along with us. He doesn't merely see our pain; He says that "whatever you did for one of the least of these brothers of mine, you did for me." (Mt 25:40). He is hungry, thirsty, a stranger, naked, sick, and in prison, along with us. When He says "never will I leave you, never will I forsake you," He means to impart a depth of love and grace that if we truly understood it, would take our breath away. 

 

What you and I live through, often involuntarily, God has chosen to live through with us, intimately, daily, weeping with us. He tenderly, faithfully, has carried us through so many years. And when I stray and struggle, he seeks me again and brings me back, reminding me again that I can trust him even in the darkest, bleakest, most destitute times.

 

Don't look too far ahead. It's too much to carry the worries of tomorrow or of years to come. Look at just today, or just this hour, or just this moment. A moment is about all we can carry. Give the burden of hours, days, and years, to the Lord. Rest in his arms and ask for the strength and perseverance for this moment. Then we learn to continually rely on him, the branches drawing on that life-giving sap of the vines that we can't live without for a moment, though we fool ourselves sometimes into thinking we can. Keep going to him for food. The rollercoaster--the ups and downs of dealing with any kind of chronic or "invisible illness" is hard--but God will sustain and encourage you as he has us.

 

When I get overwhelmed and think I just can't take it any more, sometimes all I can pray is, "help!" God has always answered those prayers--sometimes by changing a circumstance, sometimes by enabling me to go through it. (((Hugs))) Merry

[echoterry]

Hello.  I also have four adopted girls.  The two older ones have FASD for sure, but I am not sure exactly where on the spectrum they are.  I am also waiting on referrals.  The two younger ones, I am waiting and seeing.  I know for sure the baby was exposed and its very likely the middle sister as well.  I am praying for you and will be praying for a miracle for you.  It is hard.  

 

I know as their mom, you and I both want to solve everything and make it so their lives don't hurt like this, but we can't.  Keep turning it over to Jesus!  Praying for you!

[Rose in BC]

I feel your pain and know what you are feeling. We have two FASD kids. It's a challenge. Everyday. Take one day at a time. He will give grace for today and tomorrow give grace for tomorrow.

[LostSurprise]

My son doesn't have FASD, but I do share your fears for the present and the future for my own child. You have my thoughts and prayers. 

[Ravin]

I have a sister who was diagnosed with FASD. She was fostered into our family at 13. As an adult, she was able to get her hands on her psych records from when she was a juvenile in custody because of her employment connections. The prediction was she would wind up all messed up in a lot of ways.

 

She had some serious learning struggles, and some periods where she had to find her way (ran away and got pregnant, dropped out of high school her senior year). But she got her GED later, did an excellent job raising her daughter (despite the problems of her now-ex and the difficulties they faced as young parents), and has had a rewarding career working for social service agencies, taking care of kids in shelters and working her way into administration.

 

What the FASD didn't touch was her heart. She is a devout Christian and a person who tries to live up to what the model of Christ means to her. With our family's support, her faith, and her own determination, she avoided falling into the traps of alcoholism or other addictions (the same can't be said of her first husband, and she survived and broke away from his downward spiral with drugs).

 

She was never going to be an engineer or a doctor. But she's been able to lead a successful, independent life, has successfully raised her own child  and 100% broke away from the negative cycles that were her inheritance from her bio family--of whom she has remained in touch with a few extended family members, while keeping a solid place in our family despite never being legally adopted.

 

Struggles don't automatically mean doom.

 

 

[mamatohaleybug]

I have a sister who was diagnosed with FASD. She was fostered into our family at 13. As an adult, she was able to get her hands on her psych records from when she was a juvenile in custody because of her employment connections. The prediction was she would wind up all messed up in a lot of ways.

 

She had some serious learning struggles, and some periods where she had to find her way (ran away and got pregnant, dropped out of high school her senior year). But she got her GED later, did an excellent job raising her daughter (despite the problems of her now-ex and the difficulties they faced as young parents), and has had a rewarding career working for social service agencies, taking care of kids in shelters and working her way into administration.

 

What the FASD didn't touch was her heart. She is a devout Christian and a person who tries to live up to what the model of Christ means to her. With our family's support, her faith, and her own determination, she avoided falling into the traps of alcoholism or other addictions (the same can't be said of her first husband, and she survived and broke away from his downward spiral with drugs).

 

She was never going to be an engineer or a doctor. But she's been able to lead a successful, independent life, has successfully raised her own child  and 100% broke away from the negative cycles that were her inheritance from her bio family--of whom she has remained in touch with a few extended family members, while keeping a solid place in our family despite never being legally adopted.

 

Struggles don't automatically mean doom.

Thank you for posting such a hope-filled story! I'm glad your sister is doing so well.

[Rose in BC]

I have a sister who was diagnosed with FASD. She was fostered into our family at 13. As an adult, she was able to get her hands on her psych records from when she was a juvenile in custody because of her employment connections. The prediction was she would wind up all messed up in a lot of ways.

 

She had some serious learning struggles, and some periods where she had to find her way (ran away and got pregnant, dropped out of high school her senior year). But she got her GED later, did an excellent job raising her daughter (despite the problems of her now-ex and the difficulties they faced as young parents), and has had a rewarding career working for social service agencies, taking care of kids in shelters and working her way into administration.

 

What the FASD didn't touch was her heart. She is a devout Christian and a person who tries to live up to what the model of Christ means to her. With our family's support, her faith, and her own determination, she avoided falling into the traps of alcoholism or other addictions (the same can't be said of her first husband, and she survived and broke away from his downward spiral with drugs).

 

She was never going to be an engineer or a doctor. But she's been able to lead a successful, independent life, has successfully raised her own child and 100% broke away from the negative cycles that were her inheritance from her bio family--of whom she has remained in touch with a few extended family members, while keeping a solid place in our family despite never being legally adopted.

 

Struggles don't automatically mean doom.

Thanks for posting this.

[Twinmom]

I am so grateful that someone "resurrected" my post from July so that I could read it tonight! I have to admit to being so grief stricken when I wrote it that I could never bring myself to revisit the post, even to check the responses. The pain was just too raw...I've not even been able to revisit the special needs boards. To read it now, on the eve of some milestones in her treatment, is particularly poignant. To realize that I can feel so much better, so much more hopeful, just a few months later means so much. Your precious replies would have likely fallen on deaf ears back in July...tonight, they read like manna from heaven. I cannot thank you enough!

 

Over the last few months, I've immersed myself in research, in FASD trainings, in appointments and in dealing with the day to day of my other three special needs children. I've tried and failed many times to give it to God, just sort of hanging in there while waiting for the sun to come up so to speak. I cannot say that all is well, that she will be healed or that I know for certain her future will be bright, but I can say that I have begun to heal. I can see a future and a hope for her. I can see and remember the beauty of who she is even when she is hidden behind her disability. I can be calm when she rages. I can implement the new skills I have learned and recognize when they are working! I can, as Diane Malbin says so well, "try differently instead of harder." I can see God's hand at work in our lives. I can see that she DOES have an ability to learn and grow, even though she will grow differently than others.

 

Small steps have yielded big results for our family, and I know it is God's way of speaking to me. A simple post in the Chatroom led to a lovely conversation with a precious boardie who told me about Canine Companions for Independence, and we will likely be receiving a service dog for DD within a few months nearly at no cost to us! The folks working us through DD's formal diagnosis have been a God-send, confirming each step of the way that we have done the right things at the right time for DD's treatment despite not recognizing that she was FASD. I have made new friends who can support me in this journey both online and in person...who knew a support group for FASD was starting up here in my little town?!!

 

I am better. I am healing. My faith is deeper, my skills are improving and my DD is better for it. I am better for it, and though we have tough years ahead, I know God will walk with us.

 

I can hear you all now...thanks for "waiting!" ;)

[texasmama]

Such a wonderful update. (((Hugs))) thank you for sharing your heart with us.

[MerryAtHope]

Such a wonderful update. (((Hugs))) thank you for sharing your heart with us.

 

Yes!  So thankful for God's help and work in your life. I know it's a long road, but I so appreciated reading your update. (((Hugs)))

[Pen]

I only saw this now with the update post.   That is really encouraging!   I know things can go up and down, but the current up sounds like it may lead to yet more of them!

[Guest ettina]

I know this is an old thread, but I just wanted to give my take on it.

 

I am high functioning autistic, diagnosed at age 15. Although autism is not FASD, it seems like both conditions are similar in some ways - both are invisible, both can cause a person with a normal IQ to function poorly, etc.

 

The way I see it, the problem isn't really the way my brain works. The fact that my brain doesn't automatically mark faces as important, or that I have no internal time sense, or that I go off on tangents all the time, or that it takes conscious effort to imitate another person's actions - those are all just part of the package that makes me 'me', and that's OK.

 

What is a problem is that our society is built for people with a certain kind of brain, and isn't very good at accomodating those of us whose brains don't work that way. So people expect stuff from me that I'm not able to do. For example, they expect me to be able to tell my brain 'do X on Tuesday' and remember on Tuesday that I told myself to do X. I have no clue how people can actually do this - I sure can't. But when I forget, they assume I didn't care, and their assumptions cause more problems for me than simply forgetting does.

 

Another problem is that the people who've taught me life skills often didn't realize some of the skills I lacked, and when they did, they didn't know how to teach them. So I've come to adulthood with gaps in my knowledge. I only recently learned what executive functions are, and realized I have trouble with them. If I'd known that earlier, maybe I'd be doing better now. But you can never know with 'what if's.

 

I am never going to have a normal brain. But that's not the point. I can learn new skills. I can figure out strategies to work around my difficulties and make use of my strengths. I can teach the people around me to adjust their expectations and give me the help I need to succeed. I can find or build my niche, and do well in it.

 

And most importantly, I can be happy.

[canadianjen]

Thank you for this Ettina, this was exactly what I needed to read today.  My little girl is 10 and deals with FAS.  I struggle to parent and teach her but together we are learning what works and what doesn't (this week we had to have a ceremonial fire to burn her reading comprehension book because she just doesn't get it and it was causing so much grief for her and for me.  We tried, it didn't work, time to move on and find a new approach.  All I can teach her is that is we can try but if it doesn't work, move on and try a different way -- she can learn, she is capable, we just need to find the way that works for her...not alway easy. 

[Twinmom]

Thank you, Ettina, for that very encouraging post! So true, and just what I needed to hear this morning! Glad you are doing so well and succeeding despite the challenges. Gives me hope for my girl!!

[Guest dsporter]

Since I haven't been on here in awhile, I just ran across this thread.  I am so happy that you are getting the help she needs.  Our son, now in his 20's, was never diagnosed with FAS, but I am sure he has it.  I, many times feel guilty, for not getting him the help he should have had.  A pastor friend had mentioned to us, when our son was 4 years old, that he might have it.  I denied it.  I thought, at that time, he was normal.  I would scour the internet, but everything seemed so hopeless, like there was no help for him.   I would just get discouraged, be reminded of the verse, "God has not given us the spirit of fear, but of power, of love and of a sound mind".  Looking up information would put so much fear in me.  The older he got, the more he struggled, with school, with issues, with choices . . . but I did not know where to turn for help.  I guess it could have been pride, but I really did not know who to talk to or what to do.  Our son has made some horrible choices, and has a rough life ahead of him.  Because of his choices, he is now in another state, and we are not even around to help him.  He is doing fairly well on his own, for which I am thankful.  My husband and I do still have a good relationship with him, and we talk almost daily, for which I am also thankful!  I am continually reminded that God loves him even more than I do, and He can take care of him. Sometimes the only thing that keeps me going is having the faith that God is in control.  God could have kept him from getting FAS, he could have stopped any of our son's actions at any time, however, He has allowed it all for a reason.  Reasons I will NEVER understand.  Our daughter, age 17, also has some FAE, and even though her's aren't nearly as severe as our son's, it is hard to see her struggle.  She wants to play the piano, so badly, and can sit down and play quite a bit by ear, however really struggles, I'm sure because of the FAE, to learn to read notes.  In addition to this, my husband was diagnosed with brain cancer over 10 years ago and, even though it is "stable" at this point, it has affected his speech, memory, driving, etc.  It has been a rough road, but in spite of it all, I am so thankful that God gave us the children that He did.  I can't imagine where they might be if we had not adopted them.  I believe that, even though we will most likely never see a "healing" in our children, God can get glory out of any situation, and I pray that, in some way, He will get glory out of our lives.  Again, thank you for posting . . . not that you "wish" this upon other people, but it is good to know that you are not alone!

[freeindeed]

((Hugs)) and more ((hugs))

We don't know what caused my adopted dd6's problems, other than some kind of substance abuse in utero...possible FAS...no way to know. We are struggling, too...no advice...hoping to get some myself from this thread...but want you to know you're not alone.

[Twinmom]

There are no easy answers for a child with FASD and I don't imagine there will be short of heaven. However, Diane Malbin's book "Trying Differently, Not Harder" has made a big difference in our lives. The neurobehavioral approach to parenting my daughter has helped make her life so much better. Hope this helps someone...she does trainings and has also spawned a whole other group of trainers doing the same thing.