As our children get older, we wonder what will they become? Will they find their passion? Will they find that one partner who will love them and treat them well? Will they be happy and healthy without me there to oversee it all?
With Brandon, it is a bit different. Brandon has severe autism with sensory issues and communication challenges. Steve and I are his legal guardians. We make the huge life decisions for Brandon. The decisions like what day program to attend, which doctors to use, medication changes, things like that. Of course, if any program Brandon attends does not make him happy, we will find an alternative.
Brandon guides his decision making with foods and activities. We follow his lead with those things. But the big decisions, that’s Steve and I. And it will be that way for a long time.
What are our hope and wishes for Brandon in the coming years? Like many parents, we hope our adult children move out of our house. This includes Brandon. We know Brandon’s adult living situation will look much different than our other children.
There have been a couple of people who have said we should keep Brandon at home with us for as long as possible. And these same people said we should have him at home with us until we die. We absolutely do not want this scenario to happen.
We would like to see Brandon living with a couple roommates and 24 hour staff. We would like to see this happen within the next 3-5 years (we are very realistic about the funding issues and the wait list that comes along with that list).
I know this can happen for Brandon. Before I stayed home to take care of Brandon, I was employed by an agency as one of the directors of the community living program. This program was exactly what I described above…2-3 roommates with 24 hour staff.
Why do we want this for our son? Because, we feel, he deserves it. He needs to be able to live as independently as possible. He deserves to have this opportunity. I have seen the community living arrangement work for a whole lot of adults with developmental disabilities.
And let’s be realistic. Steve and I are not going to live forever. Brandon’s brothers know, and are willing, to take over Brandon’s guardianship when we are no longer able. But they are not responsible for housing Brandon with them. They will have their own families to tend to.
Brandon making this move before we are no longer able to care for him will only help him. He can move with our help and we will visit with him in his home. And he will visit with us in our home. We will still take him to Cabelas. We will still take him to the zoo and the Science Center. Brandon will make the transition with our complete involvement. I can’t imagine this happening without our help and input for him.
And to be quite honest, Steve and I will enjoy having an empty nest. We will enjoy watching all our boys grow to be the best and most independent they can be. We will love the staff who take care of Brandon. And we know they get to go home to their families at the end of a shift and rest for a bit before coming back in.
This is our hope for Brandon’s future. I hope we are able to see it through.
Stay well everyone!