Some days it is hard not to get down about how hard it can be for others to understand our lifestyles. Okay it is odd to think that really when you are dealing with Fetal Alcohol Spectrum Disorder (FASD) that you are dealing with a different lifestyle but you are. People don’t seem to understand the different parenting needed and the stress the family can be under. Because of all of this at times there are losses…
Sometimes we have to choose our children over friends or even relatives. Sometimes due to stress things are said or done that later we wish we could erase. We have to start finding ways to connect with others who “get it”.
With FASD all most people see is the behaviors…they see a child or person who doesn’t always react in the accepted way. This is often blamed on the parenting…there is so much advice given. I am sure a lot of the time this advice is offered with the best of intentions. The problem is when you are constantly hearing things like “Why don’t you…” or ” If you would…” well it gets so old. So sometimes this is not received in a good way.
I have received so much “help” and now try very hard to just remember that truly people are just trying to help. Then there is the professional opinions where it is very hard not to feel like you are doing something wrong. For some of our children who have medical issues secondary to prenatal exposure to alcohol there are many extra medical appointments. We had been in the doctors office one day with Doodle for hours. I had told him he had to stay in the chair. I was so proud of him because while he had been standing on his head at one time and kind of all over the chair he never left the chair and was quiet. He usually remembers very little and so this was a huge deal for him. I was feeling very good that he had done as he was asked. The appointment was drawing to a close and the genetic psychologist said “You really need to work on your parenting. I cannot believe that you allowed him to behave like that and just sat there not even trying to stop or correct it.” I was floored. He had done so well and I had felt so proud. Then he said “I could take him home and in 6 days have him behaving perfectly.” I looked at him and said “well I will see you back here in 6 days then.”
Yes what he said hurt but I also know that I do the best I can. I work very hard to be the very best parent that I can be. I know I am not perfect but I also know that I have done the best I can. Doodle is an amazing child who has so many medical issues. His brain damage is quite extensive. He tries very hard to please and to listen. I think it is hard for any child to be stuck in a doctors office for hours. The fact is that we often have to hear negative comments. We have to learn to just ignore it.
I do know that through the losses we learn to treasure the friendships we do have. We learn to find the positives and try to just let go of the negatives. So to all of you struggling…don’t listen to the negatives…let go of the things that are not helping you and just remember that through all of this we find the people who understand and can help us to stay positive.