A couple of days ago I read a sweet article written by a mom of a teenage boy. She was reflecting on watching her little boy grow up and become more and more independent. He was taller, quieter, spent more time in his room alone, hugged her a little less, and was starting to have a life of his own. That’s what we all want for our children isn’t it? To grow up, go off on their own and have a good life with dreams of college, financial security, and a family of their own. That’s what I want for Sylvia, and quite honestly, and maybe surprising to many of you, for Jackson.
A few months ago I had the opportunity to visit a supported living home. The two women living there were part of a program called Roads to Community Living. RCL is a program to get individuals living in institutions out and place them in homes in the community. They are then supported in their home with caregivers who help them with their daily needs. The home was a duplex, nicely furnished, clean, and they even had a dog. Each woman had a room of her own. They each had a caregiver who had just made them breakfast and made sure they had taken their medicine. They were both dressed well and had clean a clean appearance. Best of all, they seemed very happy. It was my first look, and recognition, that Jackson could have a life of his own someday. Until that day, I often wondered to myself what our future with Jackson looked like. Would Jackson live with us until we died? What would happen to him when we died? How could Kevin and I possibly care for him when we are 70?! I can barely lift him now. Would I have to dress him, feed him, move him when I am an old woman? These are thoughts that have often preoccupied my days. I still worry, but visiting that home has created new dreams for Jackson.
I want Jackson to someday leave our home and have a life of his own. I want him to have his own house or apartment. A place he can call his own. Will he go to college? Who knows! I can’t predict what new thing that kid will do tomorrow let alone 12 years down the road. But if he can, and he wants, then I hope college is in his future. I want him to be able to work and have a job that he enjoys. I want him to have friends in his life that will go out to dinner with him or a movie. I want him to have a hobby or a sport he likes. I want him to be surrounded by people who love him on holidays and birthdays. I want him to have people in his life who will celebrate who he is and love him because of all his good qualities. Most of all, I want him to be happy. And healthy. I want all of these things for my son, just like anyone else would want for their son. I’m no different than any other mom.
Yesterday we had Jackson’s annual IEP meeting. We sat in a room with his teachers, the speech, occupational, and physical therapist, a vision specialist, the music teacher, counseling student, and district official. Every thing that was said about Jackson was positive. Over and over I heard “We love working with Jackson. He’s such a great kid.” The music teacher spoke about how Jackson comes to music every day with a different general education class. He said that even when Jackson tries to sing along and is loud, they love it because he’s contributing. What I heard was “He’s loved.” We had to change some of his goals that we set in August because he met them already. His teacher said “He’s smart. He gets it.” Last year the teacher had one main goal for him - pick up a block and put it in a box. This year he has learned to read sight words, knows numbers, colors, the names of his classmates, days of the week, weather, etc. My kid is smart. I always knew it, I just wished someone else would too. If Jackson can make that much progress in a half of a school year, the sky is the limit for his future. Living a life of his own someday isn’t just a pipedream, it’s reality. A reality we start working towards now, preparing him for his future.
Having said all that, it does make me a little sad. The thought of my baby leaving and not needing me every day makes me want to turn back the clock. One of my favorite things about Jackson is that in many ways he is still like a baby. He needs cuddle time. He smiles when I kiss him (which is numerous times a day). He follows me around the house. He still likes peek-a-boo. He laughs at new noises. He loves bath time. He tries to wiggle away when I change his diaper (this I don’t love so much though). He looks at me adoringly. He loves tickle time. He lights up when I come into his room to get him out of bed every morning. And the only consistent word he has ever said is “Mama”. Ugh! He’s my baby. Always has been, always will be. It will probably nearly kill me to see him leave and live a life of his own. But at the same time, I will probably be more proud than any mom out there because it will mean Jackson has grown, progressed and succeeded in creating a life of his own. Something a lot of people may doubt along the way.
Just because Jackson was born with disabilities, it doesn’t mean those disabilities define him. They are a part of his life, not his whole life. If, at 7 years old, we place doubt on his abilities, and focus on his disabilities, we will stunt him from progressing. We will send a message to him that he can’t do certain things and that his life isn’t nearly as valuable because he is disabled. I’m not doing that to my kid. If Jackson wants to do something, we will figure out how to do it. It may take a little longer and require more resources, but we will figure it out. As Henry Ford said “One of the greatest discoveries a man makes, one of his great surprises, is to find he can do what he was afraid he couldn’t do.”