Just Another Manic Monday…

David is back in the hospital. We took him Sunday night. I knew it was coming, I just didn’t think it would happen so soon. He’s been spiraling since he got out last week and it finally got dangerous. He hit Abby in the back with a stuffed animal and she hit the tile floor. She got a few bruises. Then he shoved her into the dresser. I can’t watch them all day long, every minute of the day. I can’t make her stay in her bed all day either and there’s really nothing to keep them apart.

Abby spent Sunday night and last night with Jonathan’s family. The house is very quiet today. The only noise is the hum of the air conditioner and the trickle of the little fountain on the end table by the bed. I couldn’t take the silence so I put on a movie. I don’t know why but I decided to watch Rent. It’s been on my mind lately.

In my signature for my email I have these lyrics from Rent:

If you haven’t seen the movie, I suggest you watch it. Although the situation is reversed, I feel just like he does. The ridiculous tactics that CPS uses and the way everything is twisted and skewed is familiar.

It has been difficult since David came home on Monday. We went to court that morning and like Jonathan said this is going to be a lot more complicated than anyone said or we anticipated. As of right now and indefinitely we have no services for David except his P-doc and therapist. We are really discouraged. We were advised by our lawyers not to disclose any information to you-know-who and that being the case I won’t be posting much about what is going on. Vague tidbits here and there…but everything can be used against you in court. It’s all so ridiculous.

I have been better but I guess that is to be expected. There is so much with David that hasn’t changed, especially with how he plays with Abby. It’s so tough. I tell him he can’t sit on our bed but I have to put her there to keep them apart. If I leave them alone in his room I run the risk of her getting hurt and I have to be prepared at a moments notice to run in there.  They say nothing is sacred with kids, but we had plenty sacredness with Abby. It’s like we say, he is harder to take care of, requires more attention and keeps us from so much more than she does. It’s not fair to us.

David, once again, woke up at 3:30 last night wanting to play and I couldn’t get back to sleep because I kept thinking about all that we lose with him home. The sleep, the friends, the money, the getting out, the socializing. We can’t really enjoy and nurture Abby. We will never get these years back, they are some of the most important years of her life and we are missing them. It’s not fair to her.

I feel like I have to continually defend myself and how I feel. I love my son. I don’t want to get rid of him or dump him off because he’s holding me back. Children change things, especially ones with special needs, but this has gone way beyond the sacrifices you make for a special needs child. This has gotten to a critical, crisis level where if we keep going like this we are going to be back in the gutter with nothing like we were two years ago…living off the state, no job or money, no car. I can’t go back there and I can’t let my family get back there. I feel like I have to choose between David and the rest of my family. Between David and myself, my husband, my daughter. And it isn’t fair to everyone.

I’m hit once again with how hard life is going to be. Even as I am writing this David just screamed in Abby’s face and made her cry. It’s only been a matter of hours and I am already exhausted. It just isn’t fair.

So David isn’t home yet. We had the meeting with everyone..and I mean EVERYONE. Basically what DCF said is we either take him home and take FST or we abandon him at the hospital, they take him and file abandonment against us. Obviously we are not going to do that. So basically we aren’t agreeing with FST but refusing to abandon him. We are, again, left with nothing. Nothing that is substantial or would help David. The same crap from a year ago. DCF holds the purse strings and all services come through them but they’re refusing to do anything. It’s like the harder we push the worse things get. Like this court thing.

I was reading the last couple posts and I feel like I did when I was eighteen. I paid half the rent and half the bills on a house I shared with my mom. I paid her to watch David and everything she needed and wanted (including bills) was taken out of child support from my dad. So essentially I felt like I had as much right in the house as she did. 

So I was at work and I was telling one of my coworkers the nice thing about paying for everything is that at least I had some freedom and say in my life. So then my mom called me at work and told me that my boyfriend (now husband, Jonathan..how do ya like them apples mom?) couldn’t stay with me.  I was livid. Not only was I pissed that she had the gall to tell me what I could and couldn’t do when I was more adult than she was, I was thoroughly embarrassed. I felt like a veritable idiot because here I had told this person how great it was and now my mother was pulling the “I’m still the head of house” crap.

I kind of feel like that right now. It’s that complete and utter let down when you are expecting something and it dematerializes before your eyes. Embarrassment when you realize after all your gushing about something and hope in it, it’s not going to happen.

It’s like the feeling you get when you go down stairs in the dark that you know by heart and this time for some reason there’s a step missing. You step out thinking that you have finished all the stairs and the ground is flat from here on out and then…you drop.   For an instant you are nauseated, you feel like you are going to die, your head swims, and you doubt everything you thought to be true. In that situation those thoughts and feelings are instantly over. In THIS situation I am living in a perpetual 100 foot drop on a roller coaster.

All that nonsense to say I am exceedingly despondent.

Have you ever had one of those dreams where you are being chased but you can’t run? Or when you are trying to scream but no sound comes out? Yea…thats where I am.

We were supposed to meet with the social worker @ the hospital, the Dr. and DCF tomorrow. Without calling me or asking if it was okay they decided to reschedule it for tomorrow at 10:00. I told them there is no way.  Jon has to work and I am NOT going into another meeting without him there…someone has to be on my side.

Funny, I am also the last to know that David is going to be released on Friday. What is he coming home to? FST from Wheeler….FST FROM WHEELER!!!!!  Is somebody shitting me? Are we seriously back to the same bull shit we were going through almost 2 years ago and STILL no farther along?!?!  I had gotten my hopes up that maybe this time we had gotten somewhere. Oh, how wrong I was. We haven’t just gone nowhere we have gone BACKWARDS. I want to scream. I want to throw things. I want to cry.

We aren’t okay. We can’t keep doing this. David isn’t safe. Abby isn’t safe with David around. Our family is falling apart. We are suffering.

I am in agony…I am screaming to everyone…and nobody can hear me.

So this post will be short but just an update to anyone who reads. Last Saturday we decided that David had reached a critical point and we took him back to Yale. We, of course, sat in the ER for 6-8 hours with him hitting, kicking, screaming, scratching, biting. They gave him 5mg of Ativan along with his regular dose of 100mg of Seroquel and .05mg of clonidine. Just like last time, he could barely see straight or walk, but he was still attacking people. The social worker wouldn’t even come in the room this time. She wanted me to talk to her outside the room. It was a mess. Either way, we survived and he was admitted. 

After talking to me and hearing the story of everything that we’ve been through and the myriad of medication we have tried the Doc there said they were taking him off the stimulant, titrating down the seroquel and titrating up abilify. This is the first time they are putting him on a medication that I have asked to try…and I didn’t even have to ask. He had a reaction at first so they cut out the abilify and seroquel altogether and let him go w/out for a day or so.  Then they started him on a small dose of abilify and are going to increase it slowly. I don’t know what that means for how long he is going to have to stay, but I am glad that they are at least willing to try.

I just got off the phone with the nurse and with him and he sounds really good. She said he has had a great night, followed directions, and was really safe. He will spend his birthday in the hospital again this year. I hope, as I do every time, that this will be the last time we do this.

Waking up this morning was a lot stranger and harder than the other times. Not having David here was really sad this time. I think we have come to the place where we can accept that he can’t stay at home and we are realizing what that will feel like. 

He is only six and people make a big deal out of the fact that we feel out-of-home placement is what we want. It isn’t what we WANT. It’s what has to happen. It’s what our whole family needs. It’s not just convenience, what feels good, freedom…thats all crap. It’s David needs a 24/7 monitored therapeutic environment. It’s Abby doesn’t need to be beat up on. It’s Abby needs to get out. It’s we all need to be able to get out. It’s I need to get a job because we are drowning financially.

NORMAL families can’t survive on one income. NORMAL families couldn’t tolerate being locked in four rooms all day. Normal people can’t be isolated and not have a single friend. Normal couples can’t handle never being able to be alone with their spouse. Why should we be treated differently? Why are we expected to just deal with it, keep our chins up, be OK. I am not saying that people with special needs kids live the same lives as normal people….but even those couples get to go out together. Even they have friends that come over, or they can call. They have people that can help. Why do we have nobody? Because…we can’t meet people and the people we do meet can’t handle David.

He has to be somewhere where he can thrive and we can rebuild. Its like our family has been through a natural disaster and everything we had is gone, our friends and family are gone, we are alone with nothing. We need to rebuild our finances. We need to rebuild our self esteem and confidence. We need to rebuild our faith in G-d. 

I feel like its the morning after and he’s gone…

I don’t think David’s bus driver likes us very much. I can’t say I blame him, David is pretty challenging. Last week he took off his shoes and threw them at kids so now I have to take his shoes off when he gets on the bus. I had just gotten him on the bus when some jerk started honking. I have to do four clips in addition to his seatbelt because he wears a harness and it takes a minute or two. When I got finished and got off the bus he had the audacity to give me a dirty look and the people behind him stared as they drove past. It is so frustrating. I really wanted to give him the finger as he drove past and scream at him “You don’t know what its like ass hole. Get a life.” It still amazes me how people are so uncompassionate. You hear the stories and no matter how many times you turn a blind eye to the dirty looks, a deaf ear to the under-breath comments, it still stings and surprises me sometimes. Has our world gotten so disconnected from each other that we are unable to give others empathy or even think for a moment before being unkind to a fellow human? Anyway, I will get off my soapbox.

Yesterday was our court date. 

**UPDATE**
In the middle of writing this the school called and said David was not going to be able to ride the bus home and I needed to make arrangements to pick him up. I told her that they needed to call EMS because it wouldn’t be safe for me to transport him alone. They said they were going to do that and they had him taken to MidState in Meriden. Jon had to take off work early to come get Abby and I to go to register him. So while there David was out of control and the hospital wanted us to stay and keep him under control and be responsible for his safety. They said they were concerned for the safety of their staff and they had other patients to worry about. They wanted Jon to spend the night there with him…and what? David could sneak out of bed (like he usually does) run down the hall and stab someone with scissors and it would be our fault? I don’t think so. So this hospital is crap. I am so pissed that they did not take him to CCMC like I wrote on his intake papers. It wouldn’t have been that much farther and they are set up for kids. MidState is definitely NOT. They let us come home because he fell asleep but they want us to come back for a consult. Its a half hour drive there. When are we supposed to sleep?

While Jon was in the room with him David scratched Jon’s arm really bad. Jon started to bleed and David went over and licked his blood and said “MMM I licked your blood..” and kept saying “It’s good that I did that, I’m glad I did it, I am the strongest person in the world. It means I am stronger than you and I’m only 5.” It’s seriously frightening. He kept acting like he was killing himself, stabbing himself, throwing himself on the ground. These are the things that serial killers are made of. While at the school he put a shoelace around his neck and started choking himself. It has become apparent that we need serious intervention.

Oy vey.

So tomorrow is D-Day. Our first court date. I am trusting in G-d, truth and our love for each other as a family and hoping that those show through. I am praying that this will work in our favor and we will finally be able to get David the things he needs.

David started summer school. I was called last Friday to come and get him because he was not safe to get on the bus. Friday, as I am sure many know, was the launch of the new iPhone. Jonathan couldn’t leave work (he wound up working 17 hours) and I was frantic, I didn’t know what I was supposed to do. The school called back and said that they would bring him home in their van, but that they couldn’t do it all the time. It took four people to get him home. Two people had to hold him down in his seat. When they got there his teacher told me that they wouldn’t be able to do it again, as it was not safe.

It made me think, what was I supposed to do if I came to get him? Just me driving and Abby in the seat next to him. That is safe? I suppose if it happens again we will have to just call EMS or Mobile crisis. I am a little freaked out. He is getting out of control again.