Yesterday afternoon Abby called me to give me a little summary of how it's going in group for Zack and a few other bits of info. I was pleasantly surprised when she said Zack seems a little more involved...he made some comments the other day and even cracked a few jokes. That really amazed me. Here, at home... when he is isolated and rarely volunteers speech, his sense of humor seems buried deep within him. I don't see that same group Zack here...so it was interesting that he was actually being somewhat social. I enjoyed hearing that news.
I asked her about the possibility of switching doctors and seeing Dr M on a regular basis. She said she would find out if Dr. M was in our insurance network. Seeing Dr. K this year has cost us a small fortune as he is out of network. I chose Dr. K originally because he came highly recommended, we wanted the best...and the cost didn't matter back then, when it came to getting our son well. We had hopes and delusional dreams that Zack would "heal". Money has become an object now that we've experienced the reality of the disease....the duration...the scope....and we've realize we are fighting a battle with Zack for his own recovery.
Abby also told me that Alaina had spoken to Zack about the group home idea. Zack was very resistant to a group home when they had their conversation earlier in the week....but Abby spoke with him yesterday morning before she called me and he was sort of willing... "a little less than willing" is what he told Abby... that leaves room for us to hope "willing" may yet come. Problem is that to get into a group home, you have to go through an interview. Depending on his mood of the day, he may or may not be accepted. I think that the fact that they are talking to Zack about a group home means that we really need to step up our efforts and get the SSI paperwork completed. If we can be lucky enough to find availability in a local home, I believe he needs to have the funding at his disposal. I don't know much about any of this - or even if the SSI would help fund the group home..I guess that's why I need the $70/hour case manager..... but I was told that applying for SSI would open other social service doors for him...maybe the door to the group home is one...and the funding isn't an issue.
When I picked Zack up yesterday, the first thing he said when he got in the car was, "So you're kicking me out today if I don't get a job?".....That caught me off guard... I have no idea where the "kicking me out" thought came from...what the job connection was about. I was confused and asked him what he means...he told me there was a Jimmy John's delivery at "Family Services"...and he was told that they are hiring near us. He wanted to go get the job. I told him no job.... no money. He twists everything so there is no logical sequence to reality. And again had to reiterate the benefits of the group home. And that it wouldn't happen right away....even though the girls asked me yesterday if now that Zack will be 21 we can get him out of the house....nobody wants him homeless. We just can't continue the roller coaster ride of Zack living in our home.
It's so strange how just the presence of somebody....rarely seen... seldom heard.... can effect the environment. We can go days without crossing his path...but he roams...and we know he's here. And sadly, that makes us uneasy.
When we do see Zack, or a clue that he's been out of his room, it's usually because he's made a mess in the kitchen, he's looking for something, used up all the hot water or towels, or happens to be in the shower when one of the girls needs to use it. He is on his own life schedule...a lonely one that doesn't coincide with ours. It will be a relief for all of us when he can move out. I hope. I won't sleep if I don't feel comfortable with where he's living.
This is going to be another busy day. After I pick Zack up at 230...I have to run and pick up Lucy at 3 from her school. Tonight is the first high school football game of the season and Lucy is in the front line percussion group with nine other kids. The front line kids want some fun hats for the show...so we'll be hitting the party store to see what options we can find. Then it's football and marching band for the evening. We'll all be going and having fun at the school while Zack sits in his room....gaming alone. I am prepared to feel a sense of guilt...but I'm going to learn to squash that because life has to continue on for the girls...and I can't be who I need to be for them if I'm dragged down by guilt over Zack.
To Be Continued.....
I love them so much
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