MarLeah is seven years-old and a vibrant, giggly little ball of happiness. She has a severe intellectual disability, severe cognitive impairment, dyskinesia, is nonverbal, and has an unknown white matter disorder in her brain. Though doctors aren’t sure exactly what’s causing her symptoms, a few of the diagnostic paths that are currently being explored are: perinatal stroke, Rett syndrome, and disease associated with a mutation of the DEAF1 gene. Our life often seems like a never-ending stream of therapy visits and doctor’s appointments!
The biggest problem is that while she is happy-go-lucky 99% of the time, she is unable to follow commands well and does not understand the concept of danger. Because of this, she is a danger to herself, and requires extremely close 24/7 supervision. It’s also not feasible to take her most places at this point, as the little critter equates destroying everything with playing.
I currently care for MarLeah 14-15 hours per day. Due to her conditions, MarLeah sleeps much less than normal children, and my day with her sometimes begins as early as 2-3am. She attends a special needs school or stays with her mother while I work the other 9-10 hours. I have been working seven days per week for most of the last 18 months to ensure that we could make ends meet.
I have always known though that I would eventually transition to providing full-time care for her, or else she would likely be placed in a residential care facility. That day has come much sooner than I thought it would.
As MarLeah has grown ( she is in the 95th percentile for height and EXTREMELY strong for her size), it has become increasingly difficult for her teachers and her mother to care for her. She is so big and strong now, and her willpower when she wants something is so resolute, that it has become a major challenge just to keep her from running away outside or playing with the stove, just to name a few examples.
Last week, I was informed by MarLeah’s school ( they are in session year-round) that once her first grade year started, she would no longer be able to attend the school. She has been there for the last two years, but they no longer feel that they are able to safely provide for her needs, and the safety of the other children when she is there.
That’s where I’m hoping that some of you may be able to help.
Last week, I began the process of attempting to become MarLeah’s full-time homeschool teacher/caretaker. If everything works out I should be able to take care of her while also being able to financially support us. At worst, I will still need to interview a number of different schools in the area, and have her evaluated by each of them, before I am able to place her in a new educational setting.
During this transitional period, I will be spending countless hours visiting a myriad of schools, shuttling MarLeah to intake evaluations, obtaining documentation from her therapists and doctors, and applying to a myriad of agencies and organizations to make sure she receives the necessary funding. And even if she is approved for the funding, there is no guarantee that it will become available before she begins her first grade year.
The worst-case scenario would occur if I am unable to become her teacher/caretaker AND I am unable to find a suitable school placement for her. She would then be forced to attend the special needs class at the local public school at that point. Given that the autism school she has been attending up until now decided that they could no longer care for her needs, I am strongly opposed to sending her into an environment which will likely be even less-equipped to care for her.
Her last day at her current school will be this Thursday, August 22nd. After that the clock begins. I have already begun focusing all my attention on resolving this situation, which means I have significantly cut back on my hours at work. I will need to do this for at least a couple more weeks while I continue pursuing solutions.
It would mean the world to me to know that our finances for the upcoming month were taken care of, so I could focus my time and attention on making this transition happen as quickly and as smoothly as possible. $2,000 would allow me to focus entirely on this situation for the next 3-4 weeks, and allow MarLeah to stay home with me while I do it.