When we originally thought of being parents I can honestly say we never imagined the road this would lead us down. It has not been an easy road and a lot of the parts are still under construction but it is our families road and we are blessed to be driving down it. We have struggled through losses that at times make me feel like I can’t keep going but then I look at my other children and know that we will. This year our son passed away. I have not been able to blog since then. I haven’t been able to do so many things but I now know that I have to. I have to go back to talking and living. I owe D that. I want to share his life some day as it was incredible and has forever changed mine.
In talking with other parents I know that some of the things we wish people would know are that:
1.This child may be diagnosed with FASD but that is not who they are. My child is still a child and they may have issues due to their disability but they are still a child who also has gifts to share. It is important to not prejudge the child or person based on their diagnosis. This means lowering expectations too low but also means expecting too much. I think that one of the hardest things is when someone decides they know more than the specialists who have diagnosed my child.
2.My child has a disability and I cannot parent it away! Believe me if a stern talking to or even a spanking would make my child not have to deal with FASD for the rest of their life most parents would do it but the fact is that corporal punishment will cause the FASD child more issues rather than less. You cannot parent out brain damage and as hard as we all may try we can’t love it away either. We have to work hard to change the child’s environment and try to provide the environment that will help them to feel safe and able to function. So please don’t tell a mom or dad who is doing the very best they can that if only they would do x, y or z that their child would be automatically cured. This makes them feel as though you are saying that if only they were a better parent all would be well. And they feel that way because well that is exactly what you are saying.
3.Please if you care about me as a person be supportive and continue to care even if you don’t understand. So many parents of children with FASD begin to feel very isolated. They share that they have lost friendships and even family relationships because of people not being open to accepting their child. Or sometimes it is because they cannot accept the way the family is parenting. My advice is to try to just remember that your role as a friend or family member is to just love the mom (or dad) and realize that you have never walked in their shoes. You don’t know what their life is like. Try to just support them and show them that no matter what you are there. If the child’s behavior is such that you cannot accept it then maybe you still check in and call. Don’t cut them off completely. I know I have lost so many friendships and heard time after time to “give them back” etc. I hurt so bad with this as well this is my child. Whether they were born to me or not but they are part of my family and they can’t just be given away.
4.Our kids do not outgrow their disability and need everyone to love and support them. This is not like some illnesses where it can be outgrown. FASD is a lifelong disability. This does not mean that the person cannot be a wonderful adult with great skills but it does mean that they will always need some level of support from their environment. This support may just be understanding their emotional level may at times differ from their chronological level. It may be a payee so they are not talked out of their money by every sad story as FASD people are a generous sort. It may be that they need more support. The family needs to have people there to help them to provide this lifelong support as unfortunately so few of the people affected by FASD will qualify for the support needed. In our society we base everything on the IQ as far as qualifying for support in developmental disabilities(DD). FASD people can have a wide range of IQ’s with most of them not falling in the DD category but this does not actually show whether they need support. It only shows how well they were able to test that day. Some individuals with high IQ’s struggle more as adults than some individuals with lower IQ.
These are just a few of the things that as a parent of an FASD affected person I wish others would hear. I know that other parents could add more and I am going to ask that they do. I would like each of us to add whatever we wish others would know about us, our lives or our children’s lives.