We talk alot about the needs of the person with Fetal Alcohol Spectrum Disorder (FASD) but honestly it is important to talke about the needs of the caregiver. Can any of us be on our A game all the time? Truly to maintain a calm demeanor and let it all roll off is not something that anyone can do all the time. How often is it that we just are tired and need a moment to deal with a problem that has to be dealt with right now?
In order to take care of a person who needs an external brain pretty much 24/7 the fact is that the caregiver has to have a way to relax and unwind. Okay but it you are needed 24/7 when is that time to relax? This is where the support system has to come in and how is it that a support system can get built? It is absolutely pivotal that the caregiver have people who are willing to listen and be non judgmental. These people need to understand that the caregiver is not crazy that they are trying to explain a brain injury that can be very devious. See some of our kids sound great. They may be able to talk incredibly well but perhaps don’t always understand the messages they are receiving. The FASD person may be exceedingly bright but still have severe impulsivity issues. Just because they are bright does not mean that they may not need assistance to stay safe. The fact is that the brighter the FASD person is the more they may not get the help they need. This help may just be that they are easily victimized. So many FASD people are very giving and will give away their money, food and prize possesions so they still need that external brain. As caregivers we need to know that there is someone willing to learn to be that for our FASD people so we can have a break. If we get that break we are more likely to really shine for our children instead of just muddling through. I know that even having a few hours for myself enables me to come home and be ready to understand instead of feeling the frustration of burn out. I encourage all people to try to learn about FASD and to look into the need of the families dealing with this largely invisible disability. Stop judging parents and see that they are trying to educate and ask for help.
I know that I hear the most from families about how cut off they begin to feel from the outside world. They feel as though they have no one who could or would fill their shoes for even those few precious hours. Often families are broken apart due to frustration and anger. There are huge chasms created when well meaning family members try to brush away the parents needs or concerns with “if you would only…” or the wonderful “well you got yourself into it.” Hmmm…think of what a difference you could or would make by just listening and trying to learn and understand the needs. I challenge all to ask how you could help a family dealing with FASD to not have burn out!! I hope to hear many success stories in the future.