Alex and I have been attending a financial planning class at our church for the past few weeks. The first few lessons were about budgeting, saving and wise spending. All of which I'm more than happy to knuckle down and learn about to provide a better life for our family. But now is when the class starts shifting gears and beginnings focusing on the future.
The number one thing any doctor will tell you about autism, besides every case is different, is that you can never tell where a kids going to be in adulthood. We are meant to look at this with our "glass half full" glasses and never set a limit on their potential, which I completely agree with. But in the same hand, because no one knows where they will be come adulthood, we have to plan for best and worst case. For some, worst case is money for a group home, medical and living expenses for the rest of their lives, and someone to care for them after they die. Best case, college (maybe a lot of it if they Really love their chosen topic of study) maybe some help with living expenses if they have a job but it doesn't cover everything and maybe some medical costs, but nothing close to the costs of long term medical care.
How do you wrap your brain around two extremes? Yea, Xander's doctors and therapists all expect him to read, write and thrive in an educational setting once he gets used to it, despite being moderately autistic. But still the planning needs to be done. If something happens to us, things need to be taken care of. Even if we are still around, we need to start saving properly now, but pinching pennies and clipping coupons allow us to maintain life now life some many others in this economy and saving is always pushed to the back burner.
When Xander was born, we pained over which of our siblings we'd choose to raise him if it wasn't one of us and our parents were too old. We debated each family member and after a while made a chose. Fast forward, nearly three years later and that will hardly makes sense. We have a letter written up in case of our death in a drawer in our kitchen. Xander likes playing with the open/close game with that drawer and every time I walk by and close it I get a glimpse of the yellow legal paper we wrote it on and my stomach twists. How do I trust someone else with not only the challenge of raising my baby, but also the challenges of his special needs? Our families love him and they would do right by him but just trusting someone to fight as hard as you have fought as his advocate is a difficult thing. Pushing it under the rug and saying "I better not die," is a decision as parents we can't risk, there's no knowing what tomorrow holds, and we owe it to them to be prepared.