For those of us with young adults with FASD and other Neurocognitive Challenges the biggest thing is that people do not understand their hidden brain differences.
My friend's daughter who has Noonan Syndrome is just graduating and we have deep conversations of the transition to adulthood will mean for her and the expectations of society. Talking with a friend last week, she told me that a long time co-worker remarked when meeting her daughter "She seems normal" and my friend added "She can't do normal". As we talked the it was the perfect example of what is so frustrating for us as parents, that people cannot see our children's challenges and executive function deficits.
It is the challenge that haunts our efforts to try to find them any sort of help. No one understands that no matter how much we try to teach, our kids seldom can manage to do things on their own despite IQ's in the normal range. They just need to try harder. We just baby them, we just this or we just that. We are blamed for our kids brain differences and that we didn't teach them to be independent. We are faulted because we cannot heal our children's prefrontal cortexes.
Do you think our kids like having us try over and over and over again teaching them and badgering them to do something that for so many comes simply? For mine and most of my friends children/young adults they are people pleasers. They want to please. They would do it if they could. They don't want to be seen as slow or "stupid" as Dee often used to call herself. Our kids are blamed because they can't do it independently and they feel different enough already.
Over the years myself and the other parents I know often talk about the frustrations of our kids not getting it, and doing it for themselves. We have tried over and over and over again to find a way for them "to get it". We have tried every chart, reward system, and any other strategy offered by well meaning providers and ones that our parenting guides say we should use to help our kids become more independent. But to little avail. The only one who learned anything was Mom who learned that they do not work.
Often we find ourselves lecturing, badgering our kids out of frustration forgetting ourselves that we are expecting them to do things they can't. Sometimes I wonder who has the brain injury, me or them?
We have to be the prompt to remember the prompt and thus adding more work and frustration to our list of daily duties. We have to prompt our kids to success and if we forget or are tired or back down, we find that they just don't do it no matter how many times we rehearsed the task.
For Detamara and some of my others, they live their lives one moment at a time. They do not plan ahead very often. If they have a mission they can do it, but to do the Activities of Daily Living they struggle. So that in itself causes even more misunderstanding. It they can do it sometimes, they should be able to do it all the time. It is their choosing to not do it leading to the often diagnosis of Oppositional Defiant Disorder or some other label. It is so misleading that these kids can be so compliant sometimes and not others.
They are propped up the the daily structure of the school calender and their families routine and structure. As they age and they are EXPECTED to do it for themselves they begin to flounder. Take away the structure and they can't do normal.
We have provided what they needed to function and as they reach that magic moment of 18 when society expects them to be able to run their own lives. As that magic age comes closer the parents begin to panic. The kids have been taught the concrete rules of adulthood and think they can do them. They do not understand that their concrete thinking and their executive function deficits impact daily life and their futures.
How to we protect them and help them make progress? Interdependence. Because without it they can't live independently and they need us to help continue to be their EXTERNAL brains, prompting them into their young adult lives.
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