Becoming a new parent is a huge learning curve. Add being a new parent to a child with complex medical needs, special needs, and the learning curve can quickly become overwhelming. Also add being caregivers to two elderly parents, each with their own complex medical needs, and the learning curve can suddenly appear insurmountable.
This is where my husband and I found ourselves shortly after my mother-in-law suffered a stroke. We were already on a challenging parenting path with our medically complex special needs son, when fate left us with a decision to make — put both Mom and Dad in a care facility, or move them in with us. We chose the latter option. And while we don’t regret that choice in the least, it left us with an awful lot to juggle. Talk about burning the candle at both ends? We were burning that doggone candle at both ends and in the middle too!
But hey, I’m a Type A overachiever, always up for a challenge, right? We can do this!
Turned out Dad had undiagnosed Alzheimer’s and Parkinson’s, and Mom’s stroke left her with very limited mobility and dexterity to the extend that using cutlery was a challenge. Meanwhile, we quickly discovered that being special needs parents isn’t just a learning curve — it’s an on-going, never ending series of problem solving and to-do lists. Never. Ending.
Sheesh. Does this all sound dire and hopeless to you? I’ll be honest, there were times I was deeply overwhelmed. The hardest part for me was trying to find resources and information that would truly make life more manageable. And while there’s a plethora of resources for “special needs” (typically autism and down syndrome), there appeared to be an underwhelming number of resources for children with severe Cerebral Palsy (GMFCS IV or V). Even medical professionals continue to come up short on the multiple challenges this specific people group face.
When it came to Alzhimer’s, we were delighted to find local support for families, but often it’s just emotional support — not necessarily day-to-day how in the world do I do this?
But, eventually, we adapted to our new “normal.” We found solutions. Tangible solutions, like how to manage medications for three different people. And through our struggles, my husband and I made a decision that we wanted to help other special families, by sharing what we’ve learned and how we manage the day-to-day. It’s like they say, knowledge is power. So let’s get more knowledge out there!
If you want to know more, please subscribe! Also, feel free to let me know what sort of knowledge you’d like more of! How can we help your family thrive?