Landon, up until 6 weeks ago, was in daycare. Though I believed they cared for him to the best of their ability, I don’t believe they had the time or opportunity to really provide one-on-one time with him and work on developmental activities to the degree that he needs it. And when we brought him home in the evening, the few hours we had at night were not enough, when we could and when we would remember to do activities consistently enough to be effective.
Not long after Landon was hospitalized back in December, I learned about the EDCD (Elderly and Disabled Consumer Directed) Waiver. What it does is provide families of a disabled or elderly family member the ability to provide the care needed for the family member who would otherwise be institutionalized or put into a nursing home.
NO. Landon will NEVER be institutionalized. It breaks my heart to know that families do still make that choice. And that Virginia is one of the few states in the U.S. that still has institutions. Two of them.
My initial intention for the EDCD waiver was to hire a respite care provider to work with Landon maybe 2 or 3 evenings a week and some weekends. I found out later that he qualified for personal care – someone to take care of him in our home while we worked during the day.
You might have felt the ground shaking that day from my jaw dropping.
I had two strong, but horribly conflicting emotions – elation from what this opportunity meant for Landon and sheer terror that someone would be taking care of my child in my home alone, without supervision. I have worked in the criminal justice system for 10 years now. I know what people are capable of. I’ve heard the horror stories. I’ve seen the impact. Dustin and I had to make a decision, and we didn’t have much time in which to do it.
We went through a home health nurse program and Mary, a certified nursing assistant came into our home to take care of Landon. I find my expressive language skills failing me now to adequately explain what a positive experience this has been for Landon.
Landon’s development has shown so much improvement. Mary is present for Landon’s meetings with the infant educator and speech therapist and follows the instructions, activities and exercises given by the infant educator. Finally, someone is able to work with Landon on a consistent basis – and it is showing.
Now that this has been brought to our attention, Mary, Dustin and I make it a priority to point things out to Landon and we have taken more of an active role in showing him who is who and what is what. And Mary is persistently working on teaching “Momma” since Landon babbles “dada” all day long. I love it!
At his 6 month review, we set goals that we hoped Landon would have accomplished by this review. They included: Landon will eat some finger foods without gagging or choking (not met); Landon will finger feed himself a meal or snack each day (not met); Landon will sit independently for 5 minutes and free his hands to play with a toy (met); Landon will rock on his hands and knees while his big sister talks to him for 1-2 minutes each day (not met); Landon will crawl on his hands and knees from the family room to the kitchen to get a family member’s attention several times a day (not met); Landon will play in tall kneeling at a surface such as the sofa with a toy each day for 2-3 minutes (not met); Landon will combine toys during daily play time (not met); Landon will use gestures such as “up” and waiving both spontaneously and on request (not met); Landon will say Momma and Daddy to call his parents each day (not met); Landon will use sign or word approximations for “eat”, “milk”, “more” and “all done” to let his parents and providers know what he wants throughout the day (not met).
As of April 1, Landon had not met any of these goals, except sitting independently for more than 5 minutes. Now, he is eating finger foods without gagging or choking, he will feed himself a meal or snack each day, he is just beginning to scoot forward on his belly by pushing with his legs (his preferred method of transportation right now is log rolling), and he is waving. I believe all of this progress is due to the one-on-one consistent work that Landon gets from having Mary in the home with him. I believe, too, that he will accomplish the above listed goals by the time we review his progress in July.
Like I said, I have no doubt that he will blossom.