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.

On the move again

Hurrah!!! This week the scale started to move again after a 4 month plateau. I sat at 207 pounds since October. I was petrified that this could be where I would end. I wavered in my decisions about eating and whether it was worth it to stick so closely to what the expectations were about food after surgery if I was still going to be over 200 pounds. I fought about exercise and wondered if it was worth it if I was going to sit at 207 pounds. The worst was when I read in Oprah magazine about a woman who was just starting her weight loss journey and felt obese at 212 pounds.

I thought I was pretty skinny at 207 because I had lost 127 pounds to get there. The article was hard because it took all the positive I felt and flipped it to the, see, you are still fat thought. Even Dan couldn't snap me out of it and I wasn't enjoying his answers as they were not completely filled with confidence about me the way they used to be before the surgery. (In his defense, I am sure my doubts were wearing him down)

This week though the scale started to move again. I had been told and read often that I was probably just on a plateau because of the amount of initial loss I had had so quickly but 4 months is a long time to believe in for me. Anyway, it is moving and Friday I hit 198 pounds. What a relief!! Oh the joy I felt to get below 200 pounds. It all feels possible again. I will make my goal. I know it...getting under 200 pounds was another milestone and I am thrilled that I stuck with the program.

I am joining a new workout group Monday called Strong Women...they do cardio 3 days a week and cicuit training 2 days a week. I am excited and happy to say that positive affirmation every day on my way to work out. Where are you going? I am going to Strong Women. Which I am! I was, am and will be a strong woman because I come from a line of these women in my family. I am thankful for that strength and determination. I am thankful for the doubts, too because they make me look at myself and I find things I can change and tweak to renew my positive thoughts. The media does not do that for us. That is why it has to come from within.

Shoulds

These are the things I should be grateful for:

I should be grateful I have lost 127 pounds. I should be grateful I can run and jump and chase and play with my children again. I should be grateful that I can wun (walk/run) on the treadmill for 45 minutes without feeling completely drained and then go to a flexability class after. I should feel happy that I desire to work out in a way I never have before. These are the things I should be grateful for...instead I have entered a realm of unhappiness that is pretty unexplainable to most people.

A physician explained to me last week that there is a depression that, sometimes, goes along with this surgery. It is more a mourning. Mourning a past way of life. He had good advice in my opinion and that was to not run from those feelings. He even suggested (horrors) to feel them and recognize them and allow myself the opportunity to mourn. I decided to try this because so far my response to these feelings was to become angry and beat myself up and remind myself why I was a failure for feeling these feelings. If you all recall in the beginning I was not going to allow this. I was going to be kind to me throughout this process. Having made a small detour off that path I did need help correcting this directional challenge. I have found it.

I am allowing myself to feel these feelings now when they come up. Suprisingly this allows me to control my response to the feelings rather than allowing the the feelings to control me. I am able to recognize them and still follow what I feel I want to accomplish. For example I recognized sadness over a repeated behavior and instead of looking in the refrigerator to fill up my anger and frustration void I just sat and "enjoyed" the feelings but more importantly recognized them and acknowledged that I was angry and frustrated and then I took the time to change the behavior and took a walk rather than going to the cupboard. It felt good.