While professionals might give you all the bad news and statistics, allow me to share some of the positive ones. Your child does not HAVE to wind up homeless, imprisoned or institutionalized. Some will require supports their entire lives, but others can have a successful life. Every little accomplishment will be monumental and hard earned but can be achieved. Celebrate them like your child has won a Nobel Prize! Do not invite everyone you know for this celebration, keep it small and just within the immediate family, but still celebrate. Make your child’s favorite meal or have a cake even, the bakery will write anything on your cake! Your child will display a talent for something, be it artistic, scholastic, sports etc. Enrich it and let him or her see their own ability and be proud of what they can do better than anyone else. Understand that there will be days of anxiety where they simply are unable to function and may need to stay home curled up under a blanket. Push them to be the best they can but know when to stop pushing.
As for school, do your best to get staff and administrators to learn about F.A.S.D. Supply them with pamphlets, books, information on seminars etc. Unfortunately, at this time, depending on where you are in Canada or the U.S., you might have to educate the educators and advocate ferociously for your child. If they refuse to work with you, find another school. I know it is simply said, however when I pushed hard enough and would not back down, they relented just to shut me up and make me go away. You are your child’s only hope of receiving a proper education and you will most likely need to fight at some point for your child’s needs. The teaching parameters or ‘box’ needs to be ignored, thrown away and forgotten about. I am not saying forget about your child going to school, I am saying forget about your child keeping up with everyone else. Focus on him or her alone and give them options, not demands. If they excel at art, use art to teach the rest of the subjects, if music, use music etc. Not all days were meant to be inside a classroom, but outside too. Not all projects must be written out but can be acted out or sung. Do not push the child to frustration as that is when that proverbial switch is going to get stuck. Revisit another time and repeat, revisit, repeat.
As for your son or daughter, please have patience and don’t give up. I have read many cries for help on Facebook pages for someone to help these parents and cry for them when they can’t handle it anymore. But mostly I cry for the children who are then placed back into the system after having been rejected or abandoned again and again. We have a great propensity for making bone-head decisions and fighting to the death for them, but instead of saying ‘NO!’ give us options. The second we hear the word ‘No’ it becomes a challenge for us that we must pursue to the end of time. We can easily become fixated if given the chance and need to be regularly distracted. We may understand that we are wrong about things but will fight to the death without understanding why or having the ability to stop. This is simply the damage our brain has and we cannot escape the loop without help.
When we become enraged, we must be removed from the situation. We cannot escape the rage unless we are placed in different surroundings away from what enraged us, be it a person, place or thing. We might babble incoherently for the first few minutes we are removed but it is far easier for us to regain control once removed. And for God’s sake do not try to talk it out. We are not capable of discussion at this time, please call back later! This will only serve to refuel the rage and you will be right back to square one. You will not be able to discuss the incident until either they bring it up or days later when they are calm. We are not the kind of children who can sit down and be rational until far removed from the incident through time and place. I have wished constantly throughout my life that I had been able to say to anyone that I know everything I’m doing wrong. I know I should know better and it’s most likely that I do, but I simply can’t stop myself from doing. My switch is stuck! I’ve also wanted to scream that I know I am doing things wrong, is there anything I do right? People throughout my life have always been very quick to tell me I am wrong or doing the wrong things, but we so rarely hear what we are doing right. I know my parents praised me for my musical abilities and artistic abilities, but everyone else was so busy telling me I was stupid or that I wasn’t learning the way everyone else was that the compliments got lost in the shuffle. Other times, I simply didn’t believe I was that good; after all they were my parents and were supposed to be proud of me. Like any child or teenager, what my peers said to me meant more than what family said.
If anyone understands what it is like to grow up with a debilitating diagnosis, it’s Elizabeth Baker. Against all the odds Elizabeth has built the life she wanted despite being diagnosed with Fetal Alcohol Spectrum Disorder and Post Traumatic Stress Disorder. Elizabeth is an engaging, entertaining, and powerful speaker whose message about ‘Focusing on the Positive’ is clear, insightful and most of all, important for anyone diagnosed or living with a child with F.A.S.D. She clearly understands the desperation faced by many individuals with F.A.S.D. and addresses the nuances of behaviors associated with the diagnosis. Elizabeth is able to offer hope and clarity to those navigating the precarious life of a F.A.S.D. individual with compassion and humour.