This is it, the first time in 27 years for us. A year with no back-to-school rushes, no watching for sales, no picking out school clothes or visiting several stores to find the perfect backpack. There will be no lunches to pack and no waiting for vans to arrive.
My youngest graduated in May, so there is no back-to-school at our house this year. That part of parenting as part of our family’s history now, memorable times that have now passed into family tales shared at get togethers.
For many parents this time is now filled with seeing their children off to college, going back to the careers full force, and enjoying their independence, it is a definite corner turned in their lives.
For families like ours, though, it is not so much a corner turned as much as a tunnel ahead. Our parenting journey is not over, I suppose in some of our cases, it will never be over.
The forms that come to us now are from state agencies. Forms and interviews that may, or then again may not, lead to assistance. Visiting programs that may or may not fit your child. Discovering that the lack of programs and funding for adult services especially for autistics, something you’ve heard as background noise and through random post for years now, becomes completely and glaringly obvious. We have no money is a refrain heard again and again from agency to agency and program after program. The stability that many of our kids need is now secondary to yearly budget constraints.
Yet still it’s not all bad, there are lights in this tunnel too. The state worker, who willingly goes above and beyond, the program that seems to help and the agency who always seems to have a way to keep you moving forward, whether with technology or fresh ideas. Then of course there are your kids, always your kids. If you are lucky as in my case your kids have now transformed more into best friends, traveling companions. You become a close knit support group, brought together by shared disability challenges and your shared triumphs over these challenges.
For many parents now is their time to plan their own life goals and their retirements. Those of us who are disabled parents plan for all our futures, knowing that the life you lead and your children’s lives will always be intricately wound together, by disability.
So, we muster our energy and once again begin to fight for them, fight for ourselves, knowing we are also fighting and building a road for everyone who parents disabled. We know as a family, we will get through this stage, like every stage, together, with warmth, dignity, humor, and that warrior spirit that burns inside. For in the end, we want what all parents want for the kids, independence, freedom and a full life. We just have to fight much harder to help them get it.