My name is Kath, and I am the mom of My Cozy Family. My husband and I are taking care of our two young adult daughters who both have severe to moderate disabilities. This blog is about our family life, and the challenges we face as caregivers helping our girls navigate the transition from childhood to adulthood.
Raising a kid with a disability can be very isolating. The more severe the disability, the more isolating it is, especially for the primary caregiver (usually the mom). But, when the child gets to the age mine are now (late teens) it becomes even more isolating than before. We are dealing with all the midlife stuff: menopause, aging parents, etc. At the same time, we have lost the camaraderie we had we other parents when our kids were younger, and we are more alienated from their schools once they get to high school. Plus, our kids are getting ready to transition out of school, into the real world. That’s scary and challenging. But, not as scary as our awareness of our own mortality and that we are not going to be around forever to take care of our dependent kids. And, we can’t just leave our assets to our children either. If our children are dependent on SSI and Medicaid, they will lose that if they have more than $2,000 worth of assets. So, there is legal stuff and trusts that you have to learn about, understand and implement. It’s not easy, this stage of life!
Plus, we are living with teenagers, and all that entails. Physical changes. Emotional changes. Social changes. But, our teenagers don’t have friends, they don’t get their licenses, they don’t go to prom (but they ask what prom is, and you know they are thinking about it), they don’t (usually) go off to college. Instead, they still watch Sesame Street and Sponge Bob. You are still buying pull ups for them and washing their bed linens every day. There are all kinds of safety issues to worry about, especially when your beautiful daughter is at school with people whose hormones are raging, or your nonverbal child is at the mercy of underpaid people with frustrations of their own.
These are some of the issues we’ll talk about here. I hope this humble blog can grow into a place of support and a resource for parents who are going through the same kinds of challenges and adventures.
I have chosen to write anonymously so that I can share openly with you, while protecting my family’s privacy, especially that of my daughters. We have nothing to hide, but unfortunately, there are people out there who don’t always have the best motives. For my girls’ safety and confidentiality, I choose to keep our identities anonymous.