I’ve been away from my blog for over a year. The wind was knocked out of my sail last spring and at the same time, I needed to transition Josh from high school to adulthood. With his first year in the Access Program (18-21 life skills program in our school district) behind us, I can sigh with guarded relief. The staff there has been tremendous! They are flexible, helpful and sincerely dedicated to Josh’s success. They clearly care for him, and he clearly cares for them. He has been WILLING to get up and go every day! That sounds like such a simple thing, but let me tell you….if where he is doesn’t work for him, good luck and God speed trying to get his big butt out the door!
It’s difficult to know ahead of time the challenges you’ll face after having a child with special needs. With my daughter (non-fx and 8 years older than Josh), I kind of knew the flow of things along the way from the way my own life had progressed. There was an assumption that she would go to college, continue being surrounded by peers, decide on and pursue some type of career, start a job and make more friends at work, attend church and make more friends there. Hopefully, she would fall in love, get married and have children. And so goes the “normal” circle of life.
I’m learning this year that there is no flow of things and no “normal” circle of life with Josh as an adult. There is no natural access to peers and opportunities to continue making friends. It is up to me to find and fill his life with people and places and activities that fulfill him as an adult. Given the severity of his disabilities, I will always be searching for the next activity for him to participate in based on what he can handle at the moment. I will always be trying to figure out what will help him get the most out of his life. I can’t nag him to get out and look for a job. I will have to create a job that will work for him, and convince someone to take him (and me to assist him) at least as a volunteer in their business – I have been told that it is unlikely he would be able to secure a paid position. I will never have an empty nest as I have watched my friends experience in recent years. I will always be concerned about what will happen to him when I’m gone, no matter what I have put in place legally. It’s not easy. And, it’s always changing.
The good news on our new journey through adulthood is that I am not alone. I have a loving supportive family, amazing and supportive friends, and some awesome role models. I watch other Moms in the Fragile X community in constant awe. They are strong, unwavering, resourceful women who have figured it out and done it. I’m watching and learning from all of them. I count my blessings every day that our paths have crossed and I can learn from all of you.
We can do this, Josh! We can forge a circle of life that’s just right for you, buddy.