The wurster, the better

Things seem to be going smoothly, or should I say things that I can control. I had a nice night out last night with friends. Then, this morning, my wife tells me that the doctor increased our daughter’s medications from 350mg to 400mg per day because of an observation a therapist made. Our daughter’s behaviors change markedly when she is having her time of the month. Her therapist noted this and wondered if there was something that could be done to help her during this stressful time. So, the psychiatrist’s solution was to increase the dosage. That’s not what was asked but that was his quick and easy solution. Instead of thinking about how to help her cope during this time, let’s just increase her medications. I asked my wife why she complained to me about it but not to him. Who the hell knows? My wife is over-stressed and sometimes can’t handle things.

And I’m waiting for the lawyer to get back to me with his good tidings about helping the trust fund executor fill out the forms. I can now proceed with some other things. And also wait for my brother-in-law to do his thing.

I was thinking about a video snippet I saw the other day about Kendra. You know, from The Girls Next Door and an Eagle’s football wife-to-be. She was telling her Mom she was pregnant. Her Mom didn’t take it well and told her she wasn’t pleased and thought she was rushing things. Hello!!! Where has her mother been for the last several years? Why would she think this after letting her daughter live at the playboy mansion? Come on now, be supportive.

What is aggressive hugging? I’ll leave that to your imagination. Our daughter gets very lovable at times, sometimes knocking us over with her hugs )especially during her special time of the month). We understand this and can work with her to alleviate the situation. However, others who come in contact with her, don’t quite understand. Non-professionals really don’t understand, like children and adults. And why should they, unless they knew her or my wife and I had the opportunity to explain.

You would think that professionals would understand but they all don’t. And why should they? They are people just like you and me. But we do try to explain and help them understand and help them work with our daughter. It’s not the best solution to tell you that abstinence is the answer. Please stay away until this time passes. That’s how I interpret it. I can understand because in this situation, there are other children with a limited number of counselors to go around. And they can’t see every situation that is occurring or look out for situations that will occur. Although I understand, I don’t appreciate it on my daughter’s behalf.

And when this happened last week at a sleepover, we didn’t see it happen again since then, over the weekend, until yesterday. And it didn’t happen at home. Oh well, we’ll work this out at their recommendation.

I have been reluctant to express my feelings these past months since last August because I felt if I started, I would continue on and on. But now, I just have to. And I will go back in time and construct posts from the many notes I’ve taken. My daughter was hospitalized last August for almost 4 months. She had a breakdown. The saga of what happened since that time is interesting and dumbfounded and perhaps of interest to others who have children with mental and behavioral issues.

So, let me start with something that happened last week. Our daughter gets wraparound services from a provider in the Delaware Valley. There was a discharge plan and they were supposed to meet our daughter’s needs. Since our daughter came home right before Thanksgiving, the service has not been consistent. This inconsistency has affected the transition of our daughter as was deemed critical by the hospital team and her discharge plan. But, as we knew before she was discharged and over the past months, what should have been was not. What we, as parents, thought was needed was not provided. And there is no accountability which is a serious problem as I see it.

Since our daughter was discharged to us at home, the criticality is not there as would have been if she were discharged to a facility of some sort. There, the services would have to be provided. In our home, if they are provided then great. If they are not, then that’s okay too. As the provider will just not be billed. Something doesn’t jive with what we parents want for our children and what the provider actually provides.

If someone is supposed to come to our house 4 hours each day, then we expect that. We would like to be contacted if that is not going to happen. We would also like something to be put into place to avoid such a situation. If they know in advance that someone can’t make it, then they should find someone to replace that person. This is just the way schools work when a teacher is going to be absent. You can’t have a teacher-less classroom. That won’t do. We can’t have a daughter without services. That won’t do.

Our daughter was supposed to get at least 30 hours of service each week since she was discharged. I would say that for at least a third of the time, she hasn’t received services. And once the week is over, you can’t go back and provide her more services the next week. Consistent services are required but the provider is not accountable. I will say again that if they can’t provide it, then they just don’t bill for those services. They are not truly thinking about their client and his or her needs.

In my strange way of thinking, we parents should bill the provider for services not provided. That would then give the provider an incentive to do what is right and supposed to be done.

So the week before last on a Thursday we had a team meeting about services with all parties involved. We all appeared to be on the same page. But I guess we weren’t. We didn’t have any TSS come to our house on last Saturday. And we got no call from anyone. Then on Monday, when the Monday/Wednesday/Friday TSS came, she told us that the Tuesday/Thursday/Saturday TSS was no longer on the case. She said that she would pick up Tuesday and Thursday for the next 2 weeks while a new TSS was found. This was the first we knew of the situation. We didn’t hear it from the case manager of the provider but rather from the TSS who was hired from a temp agency. This is not right!

We had to call the case manager at the provider to find out what was going on – again. So, that was Tuesday this past week. On Friday morning, I hadn’t heard anything and so contacted the TSS who comes on Sunday to see if she could come on Saturday (today). She said she could but that the provider case manager would have to authorize this. I spoke with the case manager and told her. She said she would pass this on to the staffing person. Did I believe that this would take care of the situation? No and I was right. There was no TSS on Saturday.

What is their problem? This same thing happened in the past. This can only bring me to the conclusion that they just don’t care about our daughter as we do. It is a small and simple thing to make a phone call. We will see the TSS today and find out what happened or should I say, what didn’t happen.

I haven’t posted in a long time because i really don’t have much good to say of what has happened over the last 6 months or so. I am frustrated with many things but mostly with the behavioral health / mental health system in Pennsylvania. And so I write.

If people would only do a little bit more than just their job, everyone would benefit. Don’t just do the minimum to get the job done, go beyond and actually try to help your client. We are in a situation now with a company that we shouldn’t be. And if you were in such a situation with a business, a store, a consultant, a plumber, whatever, you would immediately drop that person or business and replace them with another who would give you better service.

It’s really very difficult for me to watch our daughter go through this re-learning phase of her recovery. She gets into everything and doesn’t always listen to us. We are now trying to contact individuals who can provide neuro-reorg services. Sarge is one and The Institutes for the Achievement of Human Potential is another. Our NFB professional goes along with my thinking that this is important at this stage in the game. Ans so we will try. Unfortunately, none of the other professionals responded to my question to them about this.

Tabitha is on her way to Paris as I write. I didn’t get a chance to say goodbye to her except to yell up the stairs “have a good time”, because I was taking care of her sister who seems to have continual accidents. Nothing ever unfolds as we would like it to. Then I got angry at my wife and daughter because I was upset. I should have realized then, as I do now, that all you can do is what you can do. Wish for nothing and you won’t be disappointed.