Today I got a letter in the mail that took me to a very sad state of mind.
Even though Isaac has not been to respite since March ( He was suspended in April for aggressive behaviors), I held on to HOPE that Isaac would still be able to return to Smith Respite. Today I got news that due to underfunding, NOT lack of need…. They would be closing in January.
I realize many have no idea what Respite is. Been a while since I explained it- allow me to explain what respite is.
Smith respite is a home, that had 24 hour wake staff, trained to care for special needs kids, whose parents or caregivers needed a break. Many families- like mine, do not have any other option. I could not get a respite worker to work in my home with Isaac. So overnight away from home was pretty much all I had. For the most part- Isaac would be picked up from school on a Friday by the Smith team, and returned Monday AM in time for school.
It was a blessing. It gave me the opportunity to sleep without worrying that Isaac would wake up and need me. So 3 nights once a month… I had that to look forward to.
Like I said things have been escalated since March/April with regards to Isaac’s aggressive behaviors.
I have many people who simply have no clue what things are like in my home. If I bravely open myself to share, many times I open myself to being critiqued, judged for the choices we are forced to make.
Today I felt like the rug of hope was pulled out from underneath of me. We have sent Isaac to camp several years in a row. Due to lack of our funding and his behaviors I may not be able to send him to camp this year either. It would crush me if he destroyed more property there or harmed another camper or staff member.
Some ( more than a few) have suggested that we need to find a place for Isaac, outside of our home.
I stop and consider… Do they know the whole story? Do they know what our options really are? Do they know what the options are for special needs kids? For kids with autism? Especially those who are aggressive?
No. They don’t. I have a trusted case manager ( or whatever her title is!) That -as shared what resources are available. They are limited.
I am sharing this to ask you to pray for us. Our options are limited… Please pray for wisdom, strength,peace. And grace…. Grace to accept where we are in the moment.
Christmas break is ahead. The energy we need to get through will be daunting. And I still haven’t gotten up to see my mom, since the end of July.
Trusting God and taking that next step is what I do. And today… I cried. The loss of Smith Respite is huge. I will be preparing a letter to our state’s Lt Gov Brian Calley. As many families need more support than what is available. Quality support.
Signing off for now….