This week I’ve seen so many pictures online from my friends posting their child’s last first day of school. It’s a bittersweet time as they move into the next chapter of their lives.
Today is the last first day for my son Spencer and the only emotion that I have is pure fear. Spencer has intellectual disabilities and he’s 20 years old. Because of his issues he has been able to remain in school until he turns 21. If I had my way he’d remain in school – a safe and caring place – for the rest of his life.
At school people “get” Spencer. There are caring teachers and administrators. Yes, I do know that’s not always the case for many kids but we’ve been incredibly blessed. He’s also surrounded by his peers. For many kids outplacement isn’t the answer and inclusion is better but for Spencer that didn’t work.
In the world of disabilities, parents talk about the day their child leaves school as falling off the cliff. That’s when all services for our kids stop and we enter the maze of government bureaucracy trying to piece together a semblance of a future. New phrases such as “day programs” and “LON” and “residential services” become our new normal that we must navigate.
Our greatest fears are that our children will never find gainful employment, that they will be sitting home all day with nothing to do and that they won’t have a social life. Many of us are faced with a difficult decision – how do we care for our children and create a meaningful life while we have to be at work all day long to earn money to care for them – for the rest of their lives?
I look at my daughter who will be a junior in high school this year and am excited about planning college visits and dreaming about the exciting adventures her future holds. I look at my son and want to hold him tight and protect him from a world that can often be cruel to people who have intellectual disabilities.
And so, here’s Spencer’s last first day of school picture. I’m so proud of how far you’ve come and I will be there with you every step of the way to make your future exciting, safe and happy.