The same kids I spoke about in the post FASD and the preschool years are now teenagers--14 and 16 years old. It is not them, but the rest of the world that causes such difficulty. The kids and their issues have changed little since the early years. Issues still remain with comprehension, organization, impulse control, immature social skills, difficulty with time management etc...
In the elementary school years, things were relatively calm for our first two with FASD. I had to fight to keep them on IEP's in school because they were able to keep up academically and went unnoticed in their lack of social skills. The issues were still there, but at school, they were under the radar of the schools. We knew the issues had not changed, but the demands on them and the natural supports that were in the classroom already were enough to get them by. At home, the same issues that we had struggled with were ever present. But, we had learned to adapt their environment, adjust our expectations and slow the pace of our life down to accommodate the needs of our kids.
Then the middle school years came, and things fell apart. Teachers were fed up with late assignments, tardiness and a seeming lack of concern for doing well. Behavior issues had to be addressed often. The lack of appropriate social skills became a struggle for everyone involved. The lying to teachers, stealing from other students and bullying that they were instigating was embarrassing and humbling for us. The expectations had increased dramatically, and the kids could not keep up with the new pace. But, what has made this journey so difficult at times, is the constant need for us to educate others about FASD and how it effects our kids. The world just does not get FASD. Our kids look defiant, lazy, uncaring, slow, and underachieving. They are none of these. They are great kids who want to do the best that they can but have not been given the appropriate supports to get them there.
One of my teenagers has dreams for her future and has even made some plans of how she wants to get there. She applied to an Arts school...she made it through an interview, an audition and wrote an insightful and poignant essay. They loved her and her work. But then they saw her grades, her late assignments, and her tardiness. "We only have one special ed teacher for the whole school" they said, "We can not support her here." Her heart is aching but she is resilient and she bounces back from the disappointment. My heart breaks for her and my heart is sad but also angry. If they could only see that she is so worth any chance they would take on her by allowing her in. Why are the doors open so wide for some children and close so tightly for others? At times, I feel like the school she attends currently does not even try to understand what it means to have FASD. When no one understands the unique learning issues that arise with FASD, and don't even seem to want to try and understand, how then is she suppose to be able to reach her goals and follow her dreams?
Our other teen feels so defeated, that he seems to have lost his dreams. Now, we are just struggling to build him up enough to look to the future. He is afraid to look to the future because he is afraid it will look a lot like the now...and his "now" is tough. He struggles in school. He struggles with friendships. He makes teachers mad because they think he is disrespectful and doesn't care. And soon, if he doesn't start getting the help that he needs, he will turn disrespectful and he will no longer care. That is my fear.
I am so tired of trying to teach the people who should understand this disability what it looks like. I try to explain that when other students hear the bell ring, they think "I better get to class now." When she hears the bell ring, she thinks "I better get to class today." Time means little to her. She can't estimate how long something will take her. She just tries to guess. And that does not work well in the high school setting. When she is given a task that is overwhelming, she shuts down. She ignores the overwhelming task until finally the special ed teacher sends home a list of things that need to get done TODAY. The list is now so long, that when I read the list, I am so overwhelmed, it brings me to tears. We spend the whole weekend on the list, completely what we can. I do the reading, she records the answers...given her way too much by the schools standards, I am sure. "She was gleaming when she turned in her assignments," the Teacher says. YES she was. Because she wants to be successful..she wants to do her best. She just needs help getting there.
"But she has to learn to advocate for herself," they say. But, they don't understand that she is difficulty self assessing the need she has for help. She has difficulty deciding when she needs help and what kind of help she needs. That IS part of her disability. She isn't being stubborn or prideful...and she does care. She is willing to accept help if it is truly helpful to her. The problem is that the help that is often given is not really helping her. It is usually more of the same. If she didn't understand it the first time, it is not necessarily going to help her to have someone tell her it again more slowly...she needs to learn it a different way..not the same way others have learned it in the past. It isn't that hard to think out of the box unless you have lived in a box your whole life and can not see that kids do not learn in the same ways all the time..especially when they have irreversible brain damage.
So, now it is time to make some decision about transition planning. What are realistic goals for the future of our kids affected by FASD? I don't want to sell them short but I am also tired of pretending that these kids are going to a 4 year college when they graduate..if they graduate. Both of our kids do not need higher education to find a meaningful career that will fit their interests. Each of them have many gifts and talents that will allow them to find joy in fields that are needed in our society.
And as a Mom, I feel inadequate so often. I can educate the world when I need to. But, I don't always have solutions. I don't have the answers. Am I selling them short by demanding that they work on more functional skills? Will I disable them more by not allowing them to work on functional skills in the school setting? But, when I think about the next few years, I know that I have to help them develop a realistic plan that is directed by their dreams, their gifts and their talents. We can not leave their futures to chance. Because the odds are against them in so many ways. I feel like there is little guidance and assistance our their to help us as parents pave this way for our kids. And then I feel like I "should" have done more. I "should" have not kidded myself into thinking that maybe their FASD was just in my head. Maybe it was just me.
And a long list of "shoulds" is the last thing I need in the midst of all the paperwork that is stacked up in my inbox. And so, out with the "shoulds" and in with the forgiveness and grace that has never failed me. I am learning to prioritize the needs of our children. Helping them to find success in the world is meaningless if I have not attempted to give them a taste of what it means to live fully for the Lord. I see children who are compassionate and kind, who are tender and thoughtful. I see children who love to worship our Lord--singing with everything they have got. And ultimately, I can only guide them, pray for them and love them with God given unconditional love. I can not decide for them if they are going to follow Christ. It is the desire of my heart that they would recognize that it does not matter one bit to Jesus that they have a disability, that they have little sense of time and organization. Jesus speaks to each of us in the unique way that we can understand. Ultimately, it is God who knows the path that our children will walk on. It is He that has prepared the way. I just want to set an example of faith so that my kids will not fear the future that lies ahead of them. For He knows what we need before we even ask...and he is sovereign, gracious and good.
Yesterday, we were talking about the proverbial glass being half full vs. half empty. I said to my sweet, always optimistic daughter that she is the kind of person who sees the glass half full. She replied, "I see the glass full enough and then I would stop talking about it and just drink it." I think she has been given the rare and unique gift of contentment...and that will bring her a long way in life!