Visitation updates for July and other fun stuff

Recently, our visits have taken a slight turn for the better. On Saturday the 2nd, Alex was driven to our home and had a pretty awful day, but on the 3rd we visited him with his cousin and grandmother, and while the visit started off pretty rocky, he ended up having a pretty good day for once.

On the 9th, this last Saturday, things were pretty up and down, but we were able to see a few really great smiles from Alex, and though he was more aggressive than on the 3rd, he was also happier during his content times. He had woken at 2am, so it’s no surprise he had some rough patches.

Unfortunately we’re in that place where the ups and downs are very stressful — every visit is a crap shoot. Will we go home happy, feeling good about our son’s care? Or will we be in tears, wondering how such an innocent child can possibly be made to bear such a difficult burden?

This Wednesday, Alex will finally get some much-needed dental work. It’s too long a story to go into, but we’re extremely angry with the state of his teeth, given that my wife first brought up concerns in March of this year, and they went largely ignored by everybody she told, including doctors. Given that she’s right about Alex’s problems about 80% of the time, it’s unacceptable to me that we can’t get Alex seen when it’s clear to us that he has something hurting inside his mouth. Unfortunately, there’s no way to prove all his cavities were actually a cause of severe pain since he has so much else going on. This means it’s very easy for apathetic people to ignore Alex’s pain in order to make their jobs easier — I’m referring not only to the medical professionals, but also the state workers who should be representing his needs.

Later this month, Alex moves to another facility that will be further from us, but much closer to his primary care. I can barely deal with an hour drive (one way), so adding another 20-30 minutes seems like it will be unbearable. But his current facility has left us with a very bad taste. I don’t know what the problem is and I’m not going to try and assign blame, but since Alex moved in December, he’s been threatened by one staff member, left to wander the halls alone early in the morning when two staff members chose to sleep out of earshot of Alex, and pushed down by an angry staff member on a day when others had described him as very calm and happy.

Maybe all facilities will be this bad, but I’m hoping we’ve just gotten unlucky. The thought that so many problems could happen in such a short time is just awful — who knows what kinds of terrible things may have happened that haven’t been reported?

Please consider signing the petition to get HR 2306 a fair hearing. All this does is let states decide for themselves how to deal with cannabis legalization or criminalization. The federal government has no place making this decision for the entire nation, and shouldn’t be spending its money trying to do so. But the people in charge of what gets a hearing and what doesn’t have refused to even consider this bill.