Not sure how long i have left.

[Bibliovore]

65. First off, congratulations

It sounds like you've had a pretty good life so far and have done well by yourself and your family. I know that doesn't make this diagnosis any less scary, but kudos to you for everything thus far, including on how you seem to be handling this.

December's a long time to wait for a more-specific prognosis and treatment plan, or to look into the possibilities of clinical trials as someone else suggested. If you haven't yet, you might talk with your regular doctor as soon as feasible to get some pre-pulmonlogist information and answers, and/or ask the pulmonologist's office if they have a waiting list in case an appointment is available sooner (say, if someone scheduled for tomorrow cancels and creates an opening). And if you may be eligible for any clinical trials -- either in your own town or in any you'd be comfortable traveling to -- those trial coordinators might want to see you themselves ASAP for assessment.

Other people have made really good suggestions about autism-specific organizations and support groups, and about trusts (though it sounds like that's not an issue for you). If your grandson will need to live with someone else eventually, it might be easier for him if you start looking into that sooner rather than later, together, so he can get your support for his own feelings and preferences and have some time to get used to the idea. It'd be great if you could meet and get to know his eventual new support, and share your concerns and get their views.

I understand that you may want prognosis specifics before you tell your family, and I don't know the nature of your family relationships or communication, but they might rather know earlier than later. It can be hard to find out that significant news was withheld for a while, and the sooner they know the sooner they can start working through their own thoughts and feelings and plans. Might any of your other family members have their own insights and assistance to offer for your grandson?

If you haven't been to see a counselor/therapist/psychologist, that might be helpful, too. A good one will have ideas on what you could do to help your grandson work on a positive attitude, and will also know (or have ready access to) exactly what services and help your local area has available for people on the autism spectrum. If your grandson doesn't already see a counselor himself, that, too, could help; having an extant relationship with one might make it easier for him to deal with grief and loss and change whenever that time comes.

One affairs-in-order thing that sometimes gets overlooked is having all necessary information organized in one place for whenever family members may need it. My grandparents kept what they called their "black book", a black notebook binder, by their desk at home; it had all details and numbers for their doctors, insurance (health, life, disability, home, car, etc.), my grandfather's military service and benefits, bank and investment accounts, billing/charge accounts, funeral service information, lawyer, etc. It was invaluable for each of their final illnesses and eventual deaths, and prevented a lot of added stress in a already-stressful times.

May you have many more years of comfortable and happy living, and may your grandson and all you care about thrive.