31 January 2008

Links on FAS/FASD info and some quick thoughts

I had some thoughts today about how to help parents who have children with Fetal Alcohol Syndrome or Fetal Alcohol Spectrum Disorders (FAS FASD). I am reading an article in the Journal of Biblical Counseling that points out the similarities in counseling and parenting. This particular volume has several articles focusing on family relationships, especially that of parent and child. The titles include : Helping the Parents of an Angry Child; Angry Teens; Counseling the Adopted Child; and Helping the Grieving Child or Teenager. (Journal of Biblical Counseling Winter 2007 Vol. 25 Number 1) I haven't completed my studies in the journal and so I cannot begin to write a proper synthesis of the various issues addressed, all of which I think may be helpful to parents of FAS or FASD children. But then, these topics aren't exclusive to FAS and FASD children.

I was blessed with raising some wonderful children in a unique set of circumstances. My sister died leaving behind 5 terrific kids. I had the honor of raising two of them. I have been thinking about what I needed to be an effective parent and what helped my kidlets thrive. One of the things that helped them is when people stopped treating them like' special needs' kids and started treating them like kids. In other words, people feeling sorry for my kidlets was not helpful. People making accommodations for their misbehavior by ignoring it was not helpful. I got the most help from folks who treated my kids like they were precious gems in puckish settings and were willing to help me shape their character.

It was difficult for me to determine how much to tell people about my kids. I didn't want them to be labeled but I did want people to know they had been through trauma. I didn't want trusted adults and friends to withhold discipline. Rather, I wanted them to be careful administers of discipline and love. It occurs to me that parents of FAS or FASD children must have a similar difficulty. People need to be aware of your child's difficulty with certain behaviors but they must not accept whatever behavior the child offers. Patience and the ability to redirect are essential qualities working with FAS/FASD children while corporal punishment seldom works as it very often escalates tension and precipitates outbursts.

Hope and resources for assistance are the primary tools stressed parents need. Hope in the God who changes hearts. Hope in the God who changes circumstance. Hope in a Savior who is not bound by what the world sets as limitations for a child. Parents of special needs children need advocates. They need understanding and informed friends who are willing to watch a difficult child for a few hours so they can regroup and recharge their souls. They need people who are willing to fight for them while they are busy parenting their children. Too little is known about FAS/FASD so teachers, officers and the general public are too often quick to pass judgment on both parent and child. Parents can feel tremendous guilt about their children's difficulties- especially adoptive parents who were sure they could love their son or daughter enough to overcome FAS/FASD.

All children are black holes of need, FAS/FASD children seem to have denser gravity than most. It's not so much that FAS/FASD children need different parenting, they need exponentially more of it over most of their lifetime. However, they tend to be oppositional and defiant to such a degree that they often do not accept the parenting they are offered no matter how lovingly it is administered. These parents need encouragement and help protecting their hearts from feeling like failures when their children reject their love and rebel against God and all boundaries.

If you're interested in helping parents of FAS/FASD children, or adopting an FAS/FASD child, you may find this site informative, heartbreaking and encouraging. The heartbreak for me is that this is preventable. The statistics in this power point presentation are mind blowing to me, though I haven't any way of researching their accuracy.

I am still searching for answers, Vicki. Don't give up on me yet!

6 comments:

Jo said...

God Bless you. As the wife of a husband who most likely is affected by a Fetal Alcohol Spectrum Disorder, I appreciated your kindness and compassion in writing about this.
He is one of the ones who fell through the cracks, and ended up being punished and ridiculed all his life for something he never asked for and that no one else recognized. In spite of this he has reached his 40's and has turned out to be a good man and a loving husband. My heart breaks when I see how people suffering from this are misjudged and to think of how his life must have been. Thank you for being another voice and spreading the word about FASD.

rosemarie said...

Jo,
Thank you for your kind words. I am so glad that your husband has 'beaten the odds.' Sounds like he has married a great advocate! His story needs to be told. His life can encourage parents of FAS/FASD children and perhaps keep someone from drinking.
Rosemarie

Lisa said...

rosemarie, i don't know if you're still maintaining this blog, but i'm hoping you're still there! your blog was the only site that came up when we searched for a Biblical/nouthetic approach to managing FASD. our adopted son has FASD and it has thrown us for a loop since the "normal" Biblical parenting principles seem to be ineffective with him to a degree. he is our oldest at 7 with 3 younger brothers, so this creates a host of other issues. he is also profoundly deaf so communicating the gospel to him is extremely difficult since his understanding is so limited even with a cochlear implant. if you have gained any further knowledge/resources for FASD, we would love to glean from your wisdom. we are in the beginning stages of research since it's only been over the past year that we recognized his condition. help please!!!

rosemarie said...

Lisa,

I haven't been good about posting on my blog and have been thinking about getting back into it. Though I have done more thinking about FASD/FAS I haven't written anything down.

You have been given a tremendously difficult task in raising a profoundly deaf son who is also suffering with FASD. The good news is God never asks us to do a task He isn't fully prepared to help us accomplish. Though I must admit He always finds a way to surprise me in how He will do it.

I have checked CCEF.org and searched for Fetal Alchol Syndrome and found nothing, I am afraid, though I found someone else had asked for help back in 2009 and they were going to refer the subject to Mike Emlet who is a medical doctor as well as biblical counselor. I did find this, which may be of value to you: http://www.ccef.org/help-caregiver-facing-challenges-understanding-and-strength

Let me think on this a bit and see if I can come up with something more substantial and specific for you, OK?

Lisa said...

thank you so much for your quick response! i am looking forward to reading the article you referred to in full. after glancing it over, it looks like it will be very helpful to us. it is ironic that it's about a man who had a brain injury b/c that's exactly what our son seems like he has (based on the chapter on "brain injuries" in "Blame it on the Brain"). except we don't have a "before" to compare him to. thanks again!

rosemarie said...

Lisa, I am about to do another blog post on FAS/FASD. I am sorry to say I haven't found anything specific to FAS/FASD in the biblical counseling but I am not giving up hope. Please don't give up hope either.