always a wrinkle: the problem with State Budgets

The wide spectrum of developments when your child has a mental illness.

Plus side -wonderful weekend with Ben. Family game of Boggle as we hunkered down in the rainstorm. Ben beat us all, soundly.  His brain when balanced: amazing.

Minus side - Monday surprise: suddenly, the group home where Ben has been living for over five years has announced that Ben will have to leave soon; after all, they are "transitional housing".  No matter that the other residents have been there even longer than Ben.  Also, despite requests, his agency caseworkers have not moved at all in those five years toward getting him on a waiting list for another program.  So now everyone will have to move on this.

If Ben were to live here at home while in transition (not a good move anyway, as I am a much better mother when I am not a policeman/caseworker too), it would mess up his benefits (meager as they are).  This is what can happen when the State decides it has to make budget cuts that make absolutely no sense in the long run for those with mental illness who are STABLE.  At last. Weigh the cost of supervised housing/stability to homelessness/repeated hospital stays. Should be a preventive care no-brainer.

Grrr.

Good news for the memoir, though! some interest!
Ben Behind His Voices: One Family's Journey through Schizophrenia to a New 'Normal'

represented by Claire Gerus Agency

Bride's Best Man

My children gave me away this summer – I got remarried. At toasting time, my daughter Ali got so emotional she couldn’t finish her speech, so her big brother Ben put his arm around her, gently took the microphone, and finished for her. He began with, “First of all, Mom, you look so beautiful tonight”, and the entire room burst out in applause. Ben’s toast was one of our favorite memories from the wedding, especially because he rescued his sister when she couldn’t go on.

Ben is not “supposed to” care about others. He has paranoid schizophrenia. But he does. He is full of love, and we are grateful for his presence. Our family lives in the moment; there are, thankfully, many moments to treasure. We know, all too well, that tomorrow could bring change. Still, we have found hope and love that we once thought might be lost forever.

I am so grateful. There was a time I never imagined I'd have such a gift; there was a time, way before that, when I took its possibility for granted.

Daring to Hope

As Ben grows, and grows up (he will be 27 next week), it seems increasingly clear that his maturation process is in slow motion - but that it is happening, however slowly. This gives me hope, and great joy - as long as I remember to stay in, and enjoy, the present.

The Medicare issue seems to be resolved for now - a few calls and one visit to the Social Security office, where even the caseworker struggled to understand the government language of the letters I've received as Ben's conservator. I felt much better, and less stupid, after witnessing that.

Ben has called me three times this week with good news. Twice to tell me about good grades for his school assignments (!!!), and once to tell me he has a job interview on Saturday, which his job coach will help him prepare for. Yes, there was another call with another agenda - he and a night staff person in his group home are butting heads, and it's frustrating for him; but all in all, the good news calls outweighed the calls for help, and that's a miracle I'm savoring. I do think Ben is showing amazing progress, especially now that he's been on his medication more consistently, and out of the hospital for a few years. Could his brain cells be in repair mode, as research suggests?

If the other shoe falls - and family members of people with mental illness live with that, always- I know we'll handle it somehow. Meanwhile, I'm choosing to be happy! And to notice that Ben is showing signs of maturity that I prayed for while he was in high school, in what I now know was the early stage of his illness. He's doing his homework! He's even earning extra credit. He does not WANT to miss class.

So he's ten years behind in exhibiting these signs. Ten years behind kids who are luckier than he was - lucky enough to have unimpaired brain chemistry. This is still progress -and I'm so proud of him. Let this be a sign of hope to parents who are still lost in despair. There is hope. Patience. Do your best, and savor the good moments. With luck, there will be more of them ahead.

Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal
contact Claire Gerus, cgerus@comcast.net, literary representation.

college admission, and new research

News came in Google alerts today: "Schizophrenia may blur the boundary between internal and external realities by overactivating and hyper-connecting a brain system that is involved in self-reflection, and thus causing an exaggerated focus on self, a new MIT and Harvard brain imaging study has found." This is a new research finding, and it could explain a lot about Ben and his difficulty in seeing outside of himself. He tries, though - oh, how he tries to act as if he is interested in others. He hugs us, says he loves us, goes through the motions - and, sometimes, I even see the spark in his eyes that used to be there, like a candle struggling to remain lit. I know that he experiences and expresses love as much as his illness will allow. I also know, for sure, that he feels the love from his family and that it is essential to his recovery.

This afternoon we went to the local community college; Ben wants to sign up for classes again. I am both proud and worried about this. He was so sweet - introduced himself to everyone from the advisors and the bursar to the bookstore security guards and shook hands all around. He seems so happy to be going back to school. And yet -there was more than his usual amount of retreating inside of himself. I caught him muttering to himself a few times, or wearing that cagey expression on his face that says he doesn't quite trust the world. When I looked at him, he snapped immediately out of it.He kept saying "Thanks so much Mom. This is great!" What choice is there but to support this, his plan to take six credits and get good grades? I can only hope. I want to threaten him, to make sure that he knows not to blow it. This nagging, I know on a deeper level, will not help. But it's really hard to keep my mouth shut. Ben had initially decided to take only three credits, which seemed much more manageable to me. But it's his life - especially after I fill out the financial aid forms for him, so he can pay the tuition. I've laid out the money, but am going deeper and deeper in credit card debt trying to supplement his meager income from social security. I am more than broke. Where are the caseworkers to help him with these forms? What would happen to Ben if he had no mother around?

Do I do too much for him? I don't think so. He lives in a group home where his benefits cover room and board with $20 a week in spending money left over. I help out by paying for the dentist, supplementing his food with a $100 budget each month (he shops and keeps track), and getting him cartons of cigarettes. Beyond that, Ben has to budget his money. It doesn't go very far. He's working on getting a job, with an employment coach. That's in his lap. His life is in his own lap, and I can't let it break my heart that he has so little in the eyes of the world. Ben is almost 27 years old, and his friends from high school passed him by long ago on the standard paths. This is Ben's journey, not mine.

Ben wants so much to be normal. Will his illness let him have this dream? Will the stress of college be too much for him? Will he wind up overwhelmed, and escape with a psychotic episode like last time? Or will he be uplifted by this chance to rise to the occasion? Will he make some new friends at school? Will he ever get to the point where he accepts what has happened to him, so others he meets can accept and understand it as well?

Classes begin next week. Stay in the moment. I'm proud he has come far enough to try this.

Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal.
contact Claire Gerus, literary representation.