Last week was difficult for me. I had a meeting with a board of people who work together to determine if Samuel needs certain kinds of support, how much of it he needs, and how much the county is willing to cover financially. Caring for kids with chronic illness is beyond expensive. Whether physical or mental; the appointments, therapies, medications, tests, caseworkers, hospital stays, specialists, blood draws, etc. all cost money. We have insurance, but the co-pays for all of this rack up quickly. One of the things I didn't know until the school system shared it with me was the assistance of the community services board and/or department of social services. I'd thought DSS was only in existence to work with families who had been flagged by child protective services- I had no idea that they did other things. Mothering a special needs child requires so much; there are countless things to tend to in order to create stability and ongoing health. When searching for support,"You don't know what you don't know", and for many years I've muddled through trying to find the place of support and help that would actually do something for us. But, how and where can you ask for help when you don't know what kind of help is available to you? That problem is one of the huge reasons I am so passionate about sharing our story. There is no need for families to have to reinvent the wheel over and over to get to the sweet spot of support and health and stability.
Anyhow! I had the meeting with the board who I've been working with for the past 3 years. It consists of multiple representatives from several community entities: someone representing DSS, someone representing the juvenile justice system, one from the county school board, a school transition specialist, someone from parent services, the community services board, and sometimes a few others. I also have my caseworker and our in home therapist's supervisor with me. We meet on average, every three months, to discuss how he's doing, what, if anything needs to be changed, and what the plans are going forward. They were the support system that helped me get him into the residential center which has changed our lives. The meetings are always a bit nerve wracking- it's never fun to discuss difficulties and struggles with people who don't know you outside of this one dimension. However, I've become more comfortable with them over the years, and they truly do care about Samuel and our family. The meeting went as usual. The caseworker gave her update, I gave mine, the therapist's supervisor shared hers too. The board asks hard questions and then discusses what needs to be changed to best support us going forward. After suggesting we increase our weekly in home therapy for him, they turned the conversation to concerns for his future.
He will be 17 this year. Which is only one year away from 'adulthood', which is one year away from losing a lot of the support that is available to minors. The board was concerned about his ability to get/hold a job; live on his own, continue to take his meds properly... and on and on. I could feel my head swimming. I've been more aware recently that he is heading towards manhood, and I've wondered what it might look like for him, but as they talked around me about bringing in disabled adult services, and trying to get him job training so that he could have the best shot in spite of his disability, I was numb. Every time they spoke the word disabled or disability, my heart stopped. I guess in reality, and on paper, he has a disability, and I'm more aware than anyone of how hard he works to live in a world where he doesn't quite fit and doesn't always understand- but I've never thought of him as a disabled person. His dreams for his future aren't always realistic, but I've always chalked that up to the dreams of all kids- sometimes seemingly far fetched, but usually settling into something more realistic as they grow and mature.
I signed the paper to get a referral for the department for disabled adults, and walked out of the building to the parking lot with my caseworker. We talked a bit and she asked about Tucker too. (She's also the caseworker for him). He's going to middle school next year and I had my meeting with the school earlier this week to go over his special education plan to get it ready for the transition. I've been concerned that it's going to be difficult for him - his autism creates anxieties and quirks that can be incompatible with the highly transitional style of middle school classes. I've put multiple things into place for him that will help support him as he transitions; from working in a small group that will focus on what to expect, to getting him a private tour and access to meeting his teachers alone without the swarm of other kids on orientation night, to signing him up for a summer program at the new school that is solely focused on preparing kids like himself for the change. But as I stood there in the lot, my caseworker told me she was very concerned about his transition and just knew he was going to have a difficult time.
It was more than I could handle. During the conversation I'd held it together, and she wasn't saying anything I hadn't already thought on my own- but as I got into my truck and headed home, it nagged at me. Over the next few days it really bothered me greatly. I've given my life to try and stabilize and provide the best chance for my kids to lead as normal of a life as possible- and while I'm hyper aware that they have issues that can bring challenges, I've also always encouraged them in their talents and skills reminding them of all of the geniuses, world changers, artists, out of the box thinkers who are different. Being reminded by a group of people of how incredibly challenging my kids' lives will be- statistically- was heart breaking. I sat in that low spot for a couple of days, and then one morning, a friend texted me the video I've posted. It was exactly what I needed to pull me out of the discouragement loop. I've read articles and cases about people who have lived wonderful lives- against all odds- due to the encouragement, hope, and affirmation of one person; a parent, teacher, pastor, friend. One person who didn't give up on them and reminded them of their greatness.
It's true that on paper we don't look so great statistically - in terms of having 'normal, successful' lives. But in my reality, I've been kicking statistic's ass for years, and have no plans to stop anytime soon. Call us the underdogs, overlook our abilities, be concerned for our futures- then watch as we blow through the low expectations every.single.time. I'm more than happy to be the test study for this group of board members as a representation of what tenacity, hope, and effort can do; and maybe in a future meeting with a single mother afraid about her kid's ability to have a good life- they'll tell her that he has just as good of a chance as anyone else; because they've seen the odds defied before.
(Please watch the video- it's incredible- whether you can relate to 'special needs' or not, it's inspiring)
