Can’t ignore this kind of ugly. Nor can you hide it or hide from it. If I would have known how hard it would be to have Liberty cared for I would have started earlier.
This part of the job of the parenting gig is not discussed as often because it isn’t easy, or fair, or joyous. It is hard. And it sucks. This week we went to an intake appointment with another government program. Here is the issue: there is no place for Liberty to go during the day that is a professional care set up, aka Adult Daycare.
Ick #1- I started making the calls and paperwork in April. There is one place and the waiting list is five years deep. In order to get Libby’s name on the list we had to go through the appointment this week. The appointment required a full history, copies of our Power of Attorney ( they prefer Guardianship), medical information, and intellectual/emotional testing.
No parent wants to sit through an exam where it is stated, or you have to state, what your child cannot do. Or what she can no longer do. Ugly. In this scenario, Liberty has to be found to have an Intellectual or Devlopmental Disability, IDD, in order to be considered for the next level of programs. The IDD has to have been diagnosed before the age of 18, so the progressive degenerative nature of her conditions are iffy. She is a different person today than she was three years ago. Her body is VASTLY different.
The term used directly after the testing was “profound” disability.
Ick #2- We live in the wrong county. If approved, Liberty could be put on a waiting list for a place Plainview which is 45 miles south of our home. We currently drive 40 miles north for my job. We could move to change her address. Or just change her address. I asked about getting a waiver since we commute and that isn’t allowed.
Ick #3- If approved Libby could be moved up the list if we would check her into a nursing home for 30-60 days continuous. Uhm. No.
Ick #4- If approved it was suggested that I start considering a Group Home with other people with IDD.
Ick #5- If I weren’t working she would qualify for a shorter lists for the Group Homes. The struggle for me to hold tight to my career, my beloved teaching, gets more real every year.
Ick #6- More cuts to health insurance for the chronically ill/ disabled are coming. Liberty is covered by my insurance and disability insurance which is still not enough in this state. I pray for those that only have disability.
Profound underestanding for this mom is that there is a black hole of need in the Texas Panhandle for daycare for younger people with disabilities. Don’t need fancy or shiny, just a safe and happy place for Libby to go to have fun and be safe until my teaching day is over.
Here’s the kicker, there are funds that will pay for this kind of caretaking, through several programs. But there is not enough places willing to open their doors to Libby and many others.
Yes, I understand the difficulty that would come with taking care of many individuals like Liberty. I get it. We were reminded during our intake this week that many parents find it easier to stay home with their adult children with disabilities. Yep. That’ll wipe that ugliness off and make it all pretty again.
Since Liberty’s illness struck I cannot count the amount of times someone suggested that I just stay home and retire from teaching. Too many. That would be easier for some families, but not for us. If it becomes a medical necessity then it might be a consideration, but that is a heckuva long way down the road. I will not wax poetic about my passion for teaching because I won’t demean the passion I have for being Libby’s advocate. Nor will address the guilt and pure anger I feel when the easiest thing for everyone seems to be me not working. Because there is this:
Liberty under her willow tree.
Also enjoying a concert in the Amarillo Botanical Gardens.
Please don’t think I am whining or complaining just putting the ugliness on display that I have encountered as I try to navigate the world of taking care of a Liberty. Many of us struggle with various parenting/caretaking issues that cover everything from sassy talk to video games to bad grades. All are on the spectrum of trying to make sure the people we take care of have the best life possible.
Would we be a closer society if we admitted that we are dealing with some ugliness in our caretaking world and sharing what we’re learning? I believe so. I believe that only through acknowledging what is ugly in my world have I learned to truly embrace the magnitude of the beauty. And there is immense beauty. So I’m sharing the ugly knowing that only time, research, and unicorn glittered blessings can guide us.
My beautiful girls.
It’s okay to not know what to say when someone shares the ugly they are dealing with. We all have our own.
I’ll update as soon as more information comes in. Blessings of hope, love, and light for you all.
Ileana
