A few years ago, maybe when John was around 20 or 21, he really believed he was going to become a rich and famous rock star someday, because he can play the drums along to the radio or a tape or CD. He imagined himself with a limo and girlfriends and fans and crowds applauding him. In his eyes he is really good. He is good, for a kid with FAS, as long as he is playing along and the band he is listening to is keeping the beat for him. But there is no way he could keep the beat for a band, there is no way that a regular band would let him be their drummer. I had to do some really painful reality checks for him to accept this.
But... sometimes dreams can come true, if those dreams are adjusted to match reality. About a month ago, Randy, the music director at the church we started going to, had a chat with John after one of the services we attended. We sit right up in front where we can watch the music group at this service that caters to teens and the young at heart. They have a contemporary music group that includes a drummer, a lead guitar, a bass guitar, a synthesizer, and sometimes they bring in other percussion instruments. It's really a rocking service. Everyone sings along to all the songs and it is easy to be uplifted and joyful. John had informed Randy that he can play the drums, so Randy said that maybe sometime after Easter, John could come practice with the group and maybe they would let him play the drums at a service sometime. John is on cloud 9. "I can't wait!" was his mantra for the past several weeks. He so looked forward to Easter because Randy said "sometime after Easter" and it's now after Easter. This coming Sunday, John is going to remind Randy, and I expect him to be invited to the next practice. Famous rock star? No, but this is close enough for John. His dreams are based more on reality now, and it is so rewarding to see his dreams coming true.
Johns other lofty dream was that he would fall in love with a beautiful woman who would also love him. And contrary to my realistic expectations, that dream is coming true as well. Some of you have read the story of John and Sheena. If not, see the photos and read about it here: John Visits Sheena. Next month, John and I will be visiting Sheena and her family again, so that John can take Sheena to her Senior Prom. It will have been a year since they met and fell in love, and they are as committed to their relationship as ever, still exchanging letters and gifts by mail and talking on the phone several times a week.
The big dream of most kids who are coming into adulthood is to attain independence from their parents. Some adult children with FASD are eligible for services for individuals with developmental disabilities. Some individuals are not. Laws for eligibility criteria vary, depending on the state or province where you reside. Even when support services are available, many adult children with FASD do not want to receive them, would rather try to make it on their own. Some make it, most do not. Around 90% of individuals with FASD need support services to live and work out in the world. Even when adults qualify for services, the quality of those services is often questionable, because social service employees are low on the payroll scale, in spite of the tremendous responsibility and stress that they have on the job.
John is one of the lucky ones who qualifies for DD services, and soon I will be looking into the possibility of his receiving qualification for residential placement, where he can live in an apartment of his choice, with a roommate of his choice, with staff support to help him be as independent as possible, considering the limitations of his disability. John is looking forward to the day he can move out and possible start a life "on his own," maybe with Sheena, if things work out that way. To be honest, I am not really looking forward to this transition. Not because I'm overprotective and can't let go. Not because I don't want John to find his own way without Mom right there all the time. But because it is hard for me to trust the "system" that will be responsible for his safety and well being. Up until now, I have done a pretty good job of keeping John safe and healthy, of protecting him from himself. I'm not sure I can just turn that over to someone else who does not have the same investment or commitment.
My lofty dream for John is that he will have that place of his own, that he will be able to marry the love of his life and grow together as a couple, that he will continue to be safe and happy and healthy in a protected environment with the supervision and structure he needs to succeed. Time will tell.
This dream will not happen by itself. I know I will need to continue to be involved with educating the community, especially the folks in the social services system, and I will need to continue to influence my senators and representatives to pass laws that will ensure that services will continue to be funded. I will dream. And I will work, and speak, and write - on behalf of my child and yours. Dreams can come true. Check back here in the future for updates on John's lofty dreams.