I know that Eli is only 17 months but I worry daily about what we will do when he is aged out of ECI.
Will I be able to afford private? Will I homeschool him myself? Will we choose PPCD?
PPCD scares me the most. As helpful as ECI has been, I’ve still had a difficult time fighting to get specific therapies. Our therapists aren’t happy, don’t stick around, the company is difficult to work with and we struggle to get what Eli needs. True, we’ve meet some amazing people through the program that will forever be part of our family…but it still sets the tone for Eli’s education.
It’s going to be a fight. It’s going to be hard. No matter what we choose.
Private therapies are expensive. Our insurance will cover only 20 therapies of any kind a year. Eli gets 20 in a month.
It’s a joke- insurance.
He doesn’t qualify for Medicaid or SSI because they count what we make as a family and we make too much.
Private school is even less accessible.
There is an amazing school in Houston that has a waiting list a year long and a months tuition more than my mortgage payment. Not to mention it’s a good 45 minutes away with no traffic and I have a job that prevents me from getting him there.
It’s very discouraging.
We (my whole family, really) loves and believes in Eli. As cheesy and obnoxious as it sounds, we feel Eli is destined for great things. We want whatever he wants and more: college, marriage…everything as long as he wants it.
This past week my sister subbed at a school in the district I teach in and a possible school Eli would attend if we placed him in PPCD.
As an educator, in a great district, I have high hopes and expectations of the program. As an educator, I worry about the actual people running the program.
I’ve spoken with others in the system in the past with less than glowing reviews about the program.
My sister confirmed some of my darkest fears. She reported conditions that as an educator were deplorable and as a mom horrifying to imagine Eli suffering through.
Some of it was the program and the teachers. Some of it was Down syndrome.
When Eli gets to that place, will he be able to self feed? Zip up his pants? Be potty trained? Speak? Will they try to take away his therapies? He won’t be the only student…how much care will he receive? Will he be able to tell me about his day?
These are scary things to imagine…giving my son to people I’m supposed to trust who have become disenchanted as educators and frustrated by the system themselves (the paperwork, the expectations, the lack of help).
I can relate! I’m supposed to differentiate for 700 students every day while the children who need the most love ask for it in the most unloving of ways. It’s hard and it wears you down after a while.
So what’s a mama to do?
I watch Eli now and see how far he has come. I see how smart he is. But I worry. He doesn’t talk much (but does have words), he doesn’t follow directions well (like “come here” and “no”) and obviously he’s not walking or potty trained. Are these signs of problems to come, or just Eli being a 17 month old?…things he will eventually overcome in time for us to make a decision.
I will say it has pushed me more to finalize our plans with Little Giant Steps (also expensive and not covered by anything!!) and makes me fuss over him more.
I will also say, watching how Ruby has already changed some of his behaviors, and prompted him to try new things is amazing. It makes me excited to see what else his siblings will teach him.
I honestly don’t know very many other mamas who have already made this choice or are very close to having to. What did you decide? Why? Tips or ideas?
I know I have a while but preparing before hand is how I best handle anything.
Perfect timing to be thinking about this in the day I return to work. 🙂
Pray that I can remain full of energy, excited for my students and not let my desire to be with my children take away from my students.