Parenting is so hard and unfortunately as we all know there is absolutely no handbook given out. I know that when you are all of a sudden parenting someone who has special needs then the need for a handbook becomes even more important. So hmmm yes there are parenting books out there but do they have all the answers? Well not usually as they cannot really account for every inevitability for each child. So how do we find the answers? How does someone whose child has just been diagnosed with Fetal Alcohol Spectrum Disorder or FASD find a good parenting guide?
I know that with the first child I had diagnosed we went in got told that the child we had come to love had been exposed in utero to alcohol. That this child had permanent damage due to this exposure. That is all I learned as the diagnosis was given and then we were shown the door. There was no offer of help at all or advice or anything. Just this child has Fetal Alcohol Syndrome (FAS) and good luck. I was devastated. I knew next to nothing of this disorder other than what I had read in the book The Broken Cord by Michael Dorris. I had read this book mainly as the children were from the Pine Ridge Reservation in South Dakota which is my home state and so it had been assigned reading in one of my college classes. The book had scared the crap out of me and so I did not want to ever adopt a child with this disorder. Now here I stood with a child who I loved with all of my heart. I had been foster mom for over 2 years and we (my husband and I) were in the process of adopting her. I did not know where to turn and went home to numbly tell my husband the news. I can remember us laying on our bed and crying for hours. The one thing I had been given with the diagnosis was that the Doctor had left me with the thought that “Remember this is the same child is the same child you walked in with you just know a little more about her and how to care for her now.” The problem was I didn’t know how to care for her now.
Where the heck was my handbook? I seriously wanted a map and there wasn’t one. I got online and looked everywhere for any information out there. What I found was so incredibly negative I was wondering if truly I was only raising her to be put out in a world that had no place for her. The future looked like prison or homelessness. I was sick as I looked at my 3 year old daughters innocent face and thought if I give up on her the way it seems the world is what hope is there? I could not do that. So I went back to the information and started looking further. I thought okay so there is nothing positive. I refuse to accept that. I absolutely refuse to accept that there is no hope for these kids. I have others who were also getting their diagnoses around the same time. So I started trying my own parenting ideas. I looked further until I found positive people and one of the best places I found was http://www.faslink.org There I found other parents. Then I started thinking of ways I could create this type of positive environment in my own community. I challenge everyone to start looking for the positives. There is so much negative out there. Not just negative but giving up on people who are more than capable and worthy they just do things differently. They may need help with things but they can still do them. Don’t give up just because it is different or harder. I love the whole motto of Diane Malbin of “Try Differently, Not Harder.” What a great way to look at it. The fact is we do all have to look differently but cannot give up.
There is so much that we can do. We can always find a way if we want. We have to get together and we have to support each other. I know that my circle of support grows daily and I am so lucky for it. We have to stick together. We can not only survive our children’s childhood we can help them excel in it. I am so glad to say that my kids are doing well. Do we struggle with mental health issues and behaviors? Oh yeah. Still who as a parent can say they don’t even with a non FASD child? If they say this they are most likely lying. We can pull together and we can show the world that our children and people with FASD are NOT throw away people! Society needs to see that they are worth a whole lot. If they are given a chance they will show you this. Let’s write our own handbook page by page and day by day together.