Thursday, July 1, 2010

Fetal Alcohol Syndrome - A Family United


As the name of the blog suggests our family is blended. We have 9 children. Dan had 4 children when we got married ranging in age from 6-12. A year later we added Trevor, the redhead in the family. (Occasionally he claims to be an only child because he is the only one I gave birth too. :)) Later we were given an opportunity to adopt a baby boy and we jumped at the chance. We received him into our home when he was nine days old. Then we got to have a wonderful 16 year old join our family as a permanent (at least we hope so) member. (She does have her own family and we love them, too. They have been very gracious in allowing us to lay claim to her, though.) Finally, through the foster care program we added two more to our family when they were 5 and 8. We have also had many foster children and I had a foster daughter when I was single that we have had the joy to have be part of our family.

Our family has always been so special to me because of the measure of love the older children have shown in accepting me when I came into the circle and then all these additional children that we have had the opportunity to love and combine into our lives. Our two oldest have married and added their spouses and now some granchildren to the mix and we have been thrilled with these additions and the tradition of acceptance has continued as we have seen the way their spouses have loved and accepted our family.


Our youngest has recently been diagnosed with Fetal Alcohol Syndrome. This stems from maternal drinking during pregnancy. We had some early ideas by some of his behaviors but had not been given a diagnosis. As his impulse control and temper and other behaviors have gotten more pronounced and intense we decided to have it looked into so we could be certain and know how best to help him. We had a MRI and pre testing done with Utah Valley Pediatrics. He was then referred to University of Utah so further genetic testing could be done. This was when we got a firm diagnosis.

Because I had been studying the outcomes of Fetal Alcohol Syndrome I was really hoping for ADD or ADHD or some other initials that would feel more positive. But our initials ended up being FAS. This was one of the few times in my life when I actually cried after being told something. I know how slim our chances are to keep our boy healthy and out of harm, through no fault of his own.

I cried again today because my sister suggested trying to find the "success" stories of FAS, meaning children that don't end up in prison, or worse. I have found that it has been difficult to find "answers" or even places to find things people have tried that have made a difference for these children. A friend said that is because there are so few successes.

As I talked to my sister she said what about the 10% not in prison or dead. Where are they? That is what I have been searching for. We have been trying to educate our family both immediate and extended about the behaviors that they will see exhibited so that they are prepared. As his mother I want people to love him and know that many of the behaviors that other children can control (which gives you good reason to punish) mine can't. It does not matter what his punishment is...he will repeat some behaviors. And we will repeat timeouts, taking away toys or rocks or many other things. We will try to keep him from dashing into the street because he wants to chase something and then stopping in the middle to see why we are yelling at him and running after him.

As I said I was sad again today. thinking negatively, which is really unlike my natural personality. I love to see the bright side. Anyway, talking with Kali today (a dear friend) she said why can't you be the 10% that help their child make it through this difficult path that lies ahead. I thought, she is right. Why not me or rather us because it is an us. Our family, extended family and community are all pulling for us to succeed. I know I have a support system in place in my life of so many willing to find new ideas and success thinkers willing to brainstorm with me to support this boy. This is one our our immediate family's best traits. We love each other. So we begin the process. We will try horse therapy starting in August as I have heard it is successful with many children with many different diagnosis. We are in the process of buying a home with a little land so that he can play and run outside and get out the excess energy in a safe environment. Mostly, though we are teaching him and each other love, patience, acceptance and a chance to grow and educate ourselves about something new. What we get in return are some of the best hugs, kisses and laughs you would ever want from a child. He has a sense of humor that is out of this world.

Here are some links for information...please share any you find as well.

http://www.nofas.org/about/

http://www.utahfetalalcohol.org/index.html

One last reminder about him and all these children...this was preventable. He did not take the drinks that have caused this. Please do not drink while you are pregnant.

7 comments:

WhoElse? said...
This comment has been removed by the author.
WhoElse? said...

Cara,
So sorry that you're at the beginning of this road. I have never had him diagnosed, but I am pretty sure that my oldest son (adopted at a year of age) is alcohol exposed. I tell people that every day is like the movie "Groundhog Day." It doesn't matter if he knew something yesterday, or was able to perform a certain task --- today is a new day and he might not be able to do it. Many of the ADHD meds do help with the impulsivity so that he slows down and you have a chance to keep him safe. There are also meds that help with sleep, if that is an issue.
I never cried as hard as I did when I realized that all I had done for him and was doing could not keep him safe from the behaviors caused by FAS. I am a very different parent to him than I am to my other kids. It is a constant swim upstream.
So, enjoy the little boy you have now. Use all of the resources provided by the school system. Start planning for his future and the idea that he might never live independently.
I used to read some FAS yahoo groups that were somewhat helpful, but I am pretty savvy about getting services and such. Long before I knew what it was, he was already getting pretty much everything he would have gotten anyway.
Make sure you give yourself a break sometimes --- it makes you a better mom. ---
Bonnie

Kat said...

If anyone can beat the odds you will do it:)

Becki said...

Love you Cara. And it's true if anyone can do it, it's you and your family. Xander came to you for a reason. I love you and your family. Thanks for letting me be family. I will miss you but I'll try to visit.

Kali said...

Hey Cara,
WOW! A blog!! I am SOOOO impressed! What a great idea!
You can do hard things. And the Lord knows you can do hard things. I adore you, Cara!
Love, Kali

Creston & Cynthia said...

Cara...I'm glad you finally got a diagnosis-even though it's not a great one. Like you said, now you can figure out ways to help him. I think that what Becki said is exactly right...Xander came to you because he was meant to be your son. Out of anyone I know I think you could create the best life for him possible...I don't want to get to cheesy here on your blog:) but seriously...you have such determination and a strong willed personality and I can see how much love you have for all your kids. The way you are I just don't understand how you wouldn't be part of that 10 percent? I think you're great and I hope everything will go well:) Love you!

Valerie said...

What a wonderful blog, Cara. My parents, long ago, decided that my brother, Joe, has fetal alcohol syndrome. Best wishes with Xander.
I recall now, that your mother served in the same mission as our eldest daughter, Courtney, --Manitoba, Winnepeg, but at a different time!