Ok, so it's been a while. Sue me! Life has been crazy busy. (HAHA! I just misspelled busy as BUSTY! My life definitely has NOT been that!) We moved during the summer, just before the school year started.
So anyway, yesterday we went to the state legislature to testify before a sub-committee on the needs of our kids. Brought M with so they could put a face to the name/file/reality of this, as they aren't just random bits of information. They are beautiful little people with limitless potential. As we were waiting for our turn, I jotted down a few notes that basically became my testimony. Here's a rough transcript (at least until we got to a few questions).
"We are here on behalf of our children J and M, and to ask for more consistency, transparency and understanding when it comes to caring for both of our children, both of whom have special needs.
Quick background - J was born at 36 weeks. At about 4 months old, he was not meeting all his milestones, so we took him to our doctor. Six years and countless tests later, we have learned that our amazing boy is legally blind and has epilepsy. he cannot talk and has difficulty walking. He cannot feed himself and isn't' potty trained.
M was born at 24 weeks. If it can happen to a preemie, she did it - bowel perforation, brain bleed, eye and heart issues, etc. As you can see, she is dependent on a tracheostomy to breathe, but also a g-button for food and regular monitoring of her shunt for her brain bleed and oxygen saturations. When we as parents are not available, she needs to have professional nursing care, as we cannot just 'take her to a neighbor' as has been suggested.
As parents, we want to not only provide what's best for our family, but also continue to be productive members of society. however, all too often recently, it seems to be more so a choice of one or the other, both not being logistically possible.
I am a teacher and my husband is a sheriff's deputy, so you can imagine our schedules. neither of us works a typical 8-5 Monday-Friday. D often has to work late, unexpectedly to work accidents, fill out reports or answer emergency calls.
Not only do I teach teenagers, but I am also evaluated on my professional development and involvement in the schools. This often means taking a course to learn new technology - SmartBoards are the latest, working a track meet or sponsoring a co-curricular club.
These not to mention our personal businesses, all of which we do to try and make ends meet and provide for our children.
Yet we often meet resistance when trying to fulfill the professional duties. For example, just before Thanksgiving, I was asked about working wrestling meets and basketball games, but i could not. The managed care company for M says they will not approve any additional nursing hours since we are in the middle of our certification period. So not only is this costing us money we could put toward the betterment of our children, but it is also potentially hurting my job evaluations. We are left wondering if instances like these could cost us our jobs down the road.
We know these services are not cheap. But we are here to put a face to the need, to show that my children are worthy human beings, not just dollar signs.
At the same time, it is not only cheaper to have children at home (versus in an institution), it is also better for the children, the parents, the family, and the community at large.
By having my children at home, we are able to constantly and consistently work on skills - feeding with J, mobility for M. Elsewhere, work on these skills might be limited to 30 minutes twice a month for example. They also receive the love and attention of their family, something every single child deserves.
As parents and extended family, we gain skills, understanding and empathy by having our kids with us.
Our community gets exposure to differences. As we all know, we don't live in a cookie-cutter world. We are not all the same. And they only way we learn about and come to accept these differences is by being exposed to them."
The state Senator then asked a few questions about nursing not being covered during physical therapy sessions or the transportation to and from. I proceeded to tell them that while extended family members may transport the kids, they aren't qualified to take care of M's trach. A PT isn't qualified to put a trach back in either, and it has come out in PT sessions before. Hubby and I went through 6 weeks of training in the NICU before we were allowed to take her home, because if it comes out, you have about 30 seconds to do something before she starts to suffocate.
Here's hoping someone, especially lawmakers, gains some understanding from our story.