Another Thursday gone by

Thursday's are my busiest days at work. I do payroll, everyone wants to get paid on Friday. I did my payrolls and it was overall an uneventful work day. Tori called me and told me Donna got through her surgery just fine and should go home tomorrow. I can't believe they are sending her home so soon. She was on life support less than a week ago! I think it's because they don't have insurance. Brandon had a good day with the sitter. Today was her last full day. She said she can still watch him Monday's since she has off. I called his old sitter, Renee, to see if she could watch him the last two weeks before school starts, and she said yes and was excited to see him again. I wish she could be my all the time sitter, but that's life. When I came home from work Brandon and I went to Walgreens to drop off his new scripts. I bought him a bionicle thingy that shoots balls. I bought some new shampoo. I will work on laundry tonight and try to restore some sort of order to the house. I'm am really, really drained and tired. My tooth hurts and I have to wait three weeks until I can have my root canal. Yipee!! Overall I feel relieved, grateful, and blessed. God always comes through for us, our needs are always met.

Brandon's Dr appointment and an update

Today Brandon saw Dr Hubbard. This was a good appointment. She saw him starting to escalate in the waiting room and when she came to the regular room he was calm and wrapped up in a blanket. She said it was awesome that he is learning to self soothe himself and can tell when he is over stimulated and block it out by using the blanket. He is also using a squishy to distract himself when he his getting revved up. She did some med adjustments. She upped to Lamictal, took away the Risperdal, and added the Invega. She wasn't happy with the weight he has put on since the last visit and think the Risperdal is the culprit. Once we get approval from the insurance company, I'll start him on the Invega. I'll up the Lamictal this weekend when I'm home and can watch him closely for side effects.

Donna had her electrical test today and her heart stopped while they were doing the test. They said she had to have the internal defibrillator in, they will do that sometime tomorrow. We went to the hospital tonight and Brandon got to see her. He was so happy and I think relieved that he saw her with his own eyes. I'm very anxious about tomorrow, and I have to work, so I won't be there. It really sucks. I hope and pray that she makes it through this. I can't even put into words the devastation that would result if something happened to this wonderful woman.

Wednesday's happy thought

If you want to make peace, you don't talk to your friends. You talk to your enemies.
Moshe Dayan (1915-1981)

an update on the crisis

Well I left off with Donna on life support. They took her off life support Monday morning. She was up and talking, in total disbelief about what happened, and no memory of the event. When I was visiting with her I told her that I loved her. The doctor came in while I was there. She just got over the shock of what happened and then he tells her that she had a massive heart attack. Not on Sunday, but some other time. He tells her that the muscles in her heart are severely damaged, only 20% effective. That she is at great risk for another one, but the real bad kind, the one that kills you. He goes on to tell her that she needs to be transferred to another hospital to run electrical tests and possibly implant and internal defibrillator. I am holding her hand, she doesn't hold it back, doesn't squeeze it, doesn't even acknowledge my touch. She had to be numb and in shock. Rich, Tori, Rick and I were there with her. I felt privileged to be part of this. Blessed to be a part of this family. At first I was apprehensive about what my place was, I still am. But I knew, I know that my place was with the family during this tragedy. They transferred her today, up to Sarasota. They will run tests tomorrow and we will go from there. There is uncertainty for the future, but definite hope for the best.

Tuesday's thought...

The will to live can get you through sickness,
but no one can live with a broken spirit.
---Proverbs 18:14

A Family Emergency

Last night we had Pat and Tori over for dinner. We were just finishing out chicken legs, when Pats cell phone rang. It was the police calling from Donna and Rich's house. Rich found Donna floating in the pool. We packed up Tori, the baby and Pat and Rick went with them to the hospital. I took Brandon to my moms, we prayed out loud in the car. I was so proud of Brandon, his little prayer to God was so sweet and heart felt. I got him calmed down at my moms and sped off to the hospital. She somehow had passed out in the pool, she was blue and not breathing. She is on life support right now. We stayed at the hospital until after 2am, making it home at 3am to sleep for a little while. Now we are getting ready to go back to the hospital, I called out of work and so did Rick. I'm so scared, she is a sweet, kind, giving woman and the center of the family. It was so horrible to see her hooked up to machines that were breathing for her.

Sunday's nice thought

Nothing is a waste of time if you use the experience wisely.
--Rodlin (1840-1917)

Cathy Cathy is here!

My friend Cathy is over from Melbourne. I won't get into great detail, but her son was killed by a drunk driver, (also an illegal alien) his wife was in the car, she lost her leg, and she has two little boys. Monday is this man's sentencing. Cathy is one of those special people, the kind of person who takes on your burdens as if they were her own. Life is always throwing things at her and she keeps saying the lord won't give her more than she can handle. She is truly an inspiration for me. One time I commented on how cute her sandals were, and she took them off and gave them to me, that's just the kind of person she is. If I called her tomorrow and told her I lost my house and needed somewhere to live, she would let me into her home. Well she called me up and wanted to know if we wanted to go to the movies with her and her grand daughter. I said sure! We went and saw Space Chimps, it was really a good movie. Brandon was really good and was nice to the 4 year old we went with. I notice that he does better with girl kids than boys. We dropped them off where they were staying and Brandon wouldn't get in his booster seat because the little girl left her "germs" on it. We washed it up and came home. So over all today was a good day.

Nice saying for the day

We cannot always build the future for our youth, but we can build our youth for the future
-Franklin D Roosevelt (1882-1945)

Day 1 of "the schedule"

We started the whole structure deal today, I made a kinda rough draft for the day. So far, so good. We started with breakfast at 8am (eggs and toast). At 9 we took the dogs for a walk. At 10 Brandon had a snack. Then he did a chore (put his pillow nest away). We went to the grocery store and was home at noon. I made him lunch (pb&j), and we made pineapple juice freeze pops. We are doing a 1 hour quiet time now. I'm letting him watch TV quietly and hopefully he will take a nap. He's upset that the pops aren't frozen and he's very agitated about that. He hates me and I'm a "shit face". A nap would be great! After his quiet time he will take his afternoon meds and then we will do an activity. I love the Dollar Tree! I bought some play doh, flash cards for math (Spiderman), pop sticks, and a squishy thing. I gave his the squishy thing when he was whining about the unfrozen pops, and it seems to help soothe him. I want to talk with the behavior support specialist about "brushing" him, I've read about it and want to see what she thinks about it. If the weather permits we will play outside for a little while, maybe on the trampoline, or maybe ride his bike. It's rainy season, so the storms usually start building up in the afternoon. If it's a rainy mess, we will do something inside. I'm thinking maybe a snack at 4pm, then read a book or do flash cards. Rick worked today, so I'd like for him to participate in one of the activities tonight. I'll keep my fingers crossed.

PS-some good news about the baby sitter search. I received contact from one of the sitters who had previosly applied and she wants to set up an interview. I'm excited and nervous.

Recap of visit with behavior support specialist

Tonight the behavior support specialist came to the house. We left Brandon at my moms so we could talk about him-without him knowing we are talking about him. It went pretty good. This lady is very down to earth and easy to talk with. I didn't feel like I was being judged, which is apparently an issue of mine. She recommended setting aside "family time" at least 5 nights a week. During this 45min to an hour we would play board games, play doh, make wood cars or birdhouses, playing outside, or taking a walk. She is going to look into some other ideas that we can all do as a family. I think if I can be consistent that it could really work. I have a hard time with that, and that sucks, because that's one of the things I'm failing Brandon and Kaylin. Another thing she suggested was to set up more structure at home.. That ones gonna kill me. She said start by setting up structured snack and meal times. Ideas she had included bagging up individual snack servings daily and give him snacks at certain times of the day along with set meal times. I'm thinking about doing a visual schedule that he can look at everyday too. We are also going to set a bed time, with bath time before that. We are also going to cut TV allot and use it as a reward, instead of the TV always being on as background noise. So those are our goals. I think Rick will have a hard time following through, and I'll have a hard time being consistent.

How sweet to snuggle

We really had a great night last night. Brandon was so sweet and snuggly. It makes the other side of it so much easier to deal with. He had one melt down yesterday over his chocolate coin maker, there were no chocolate chips to melt in it, so the baby sitter let him use chocolate syrup, on Ricks antique coffee table. It was still there when I came home from work. I asked Brandon to put all the parts that had chocolate syrup on it in a bowl, which I filled with soap and water so he could wash them and put them on a towel to dry. Then he put the non chocolate parts back in the box and I cleaned the table with wood cleaner. He didn't object, just did as he was told with no fight. We had a snuggly night on the couch watching TV and chatting about different things. It was really nice. He is going to my moms today, so I know I don't have to worry about things. She won't let him over eat, and he'll get to go swimming and help her in the garden. I love my mom! I wish she was well all the time (she has MS), I know Brandon benefits from his time with her. And she's my mom, and I turned out alright.

In regards to the babysitter issue, I put a post up on the bulletin board at work, asking if anyone had a nanny cam I could use. It would be nice to see what is really going on. Brandon does lie at times, and I would love to be a fly on the wall to see what the real deal is. Rick talked to her about the ice cream thing, and she said she wouldn't let him do that anymore. Yesterday he ate all but 8 fruit snack packages (out of 30). Not good. I contacted some of the other sitters that had previously applied for the position, hopefully I will get a response from them.

What does Brandon's future hold?

I think. ALOT. I wish I could glimpse into Brandon's future and see what kind of teenager, young adult, man, husband, and father he will be. Will his mental illness take hold in his young mind? Will he make choices that put him in the juvenile justice system? Will he choose to embrace his illness as something that makes him a unique individual? Will he take the foundation that I've tried to give him and build on it, or reject it? I know that he can learn to cope with his issues, I know as he gets older he will learn more self control and know more about what appropriate and inappropriate. It's there. You can see it. I really want to fertilize those seeds and nurture the tender shoots until they are strong and can stand on his own.

I believe the babysitter search starts over again...

I think I'm going to re post the babysitter position. She has been watching him for over a month now. Brandon still doesn't like her, and there is no evidence of them bonding at all. I was really looking for someone that would be a part of our family. I know you can't expect strangers to love your child like you do. But I do expect visible fondness or something that would show me that she likes Brandon. Brandon is special, I don't mean special needs special (although he is), I'm talking about his character. He's the type of kid who knows right away if you like him or not. And either you like him or you don't, if you don't, there is no need for you to be his child care provider. He knows, and he feeds off what ever energy he his getting from the people in his life. My overall impression of Veronica (name changed) is that she is lazy, non stimulating, and un attached. I'm not a neat person by any measure what so ever, but after I use a paper plate i throw it in the trash. I don't let a child eat a mostly full container of Breyers, or go through their parents drawers (finding the "tooth stash"). It seems that there is no other choice, unless something drastic happens where she totally flips around. I have no idea how to fire her!

Brandon had a good day :0)

Brandon had a good, non eventful day. I'm starting to wonder about the babysitter. She let him eat an almost full container of Breyers. It doesn't seem like she pays attention to what he is doing. He's been getting into stuff and eating things he shouldn't (no red dye). All he does is sit in the house and eat and watch TV. That and his meds are going to make him pack on some weight. Not good. Little boys need to play outside and ride bikes and jump on trampolines. Doing things to stimulate his mind and help with his sensory issues. Coloring pictures, playing with play doh, digging in the dirt, that's what kids do! I think she is lazy, and I feel like she's not bonding with him. I don't know what to do. This is the first time I wish someone read this stuff, then maybe someone could offer some insight. Only I could turn a good day and complain about it. He did have a good day. It was so nice, he was telling me he loved me and how beautiful I am to him. "Yur the best mom in the whole wurld".

Please kick this soapbox out from under me!

I'm in a ranting and raving kind of mood. You don't know me very well, so it's hard for to realize that this isn't the norm for me. I'm typically very mellow, non confrontational, patient and easy going. The last couple days, I havn't felt that way. Everything and everyone is agitating me in some way or another. I have been just plain cranky.

First we'll start with my friend Mary (not her real name), I accidentally stumbled upon her blog, which I didn't even know she had. I'll give you a little background on our relationship. She used to work for an organization that Brandon was part of. Believe it or not she was my family advocate. Her position was terminated with them and we remained in touch. She has a disabled child also, so we really connected with that common ground. I felt that I could trust her and she trust me, you know, a friendship. She then became my after school babysitter for Brandon. She would lie to her husband to stay later to get away from her home life (her husband wouldn't let her do anything, but he's his own Oprah show). He had trouble finding work, so they packed up and moved to Oregon (state changed). The more she shared of herself, the more I wanted to help her and her son Bob (name also changed). Through research I was doing for Brandon about different things that may lessen his condition, I always thought of Bob. I would email her articles about his medication, treatments, and his condition. I would call her and tell her different things I would find out, she would tell me her husband Horace (name changed) wouldn't let her buy supplements. I offered to purchase them for her if she would be committed. And so on and so forth. I feel that I really did have their best interest in mind, I know that I come across weird to other people, so I understand her scepticism to try something different. Was Horace really that controlling and messed up? I don't know, I just know what she tells me about him. Was she just using him to get her point across? I can't tell you. So there is the background in a nutshell. Now fast forward to present day-ish. Mary came down for vacation with Horace, Bob, and her daughter Edith (name changed). She came to the house with the kids. My son was being mean, calling Bob "evil" and "weird". I asked him to not say those names, that it wasn't nice. He told me he "hated" Bob. I choose to pick my battle. Mary didn't seem upset by the situation, so I ignored his negative behavior. This will usually prevent a full blown melt down, give him time to process, re group, and act like a human once again. Nothing was said, like I said, we both have disabled kids, so we understand these things. Brandon can't control his behavior anymore than Bob can. Mary suggested we go out to dinner, I said that was fine as long as you don't mind Brandon's name calling, let's go to Dennys after I get out of work. So that was that, we went to Denny's we at our dinner we went our separate ways. That weekend we went to the water park, we had a great time. It started raining, so we took cover. I foolishly choose behind the ice cream cart and that caused quite a giant ruckus. Mary wanted to wait out the rain, I was ready to go before Brandon escalated. We waited an hour. maybe more and then got rain checks for next time. I took her out to dinner and we had a nice time. That was that! Well apparently that's not how she felt, but she didn't say one word to me otherwise. I find the blog she wrote about those events, I read it and a shook all over, my heart was pounding, I was sweating. My one ally in this battle is now gone. It hurt. It hurt because I thought we were on the same page, and the she understood, really understood because she goes through it just like I do. I thought there was some kind of un written rule. I never judged her kid, so she wouldn't judge mine. So although this ranting and raving isn't all about Brandon, is it in a way. With my friend gone, she took that little piece of sanity I had, the one that told me I wasn't alone.

Rough Start to the morning

What a rough start this morning. Brandon woke up sweet as apple pie. He took his meds (Lamictal, Tenex, Risperdal), he took his supplements (Omega 3-6-9, and his multi). He told me I was the best mom in the world. We talked about the babysitter. We talked about his up coming birthday party, things were going just fine. I was starting to think he hated his babysitter just a little bit less. And then it happened......I put his clothes out for the day and asked him to please change into them. That was the end of our peaceful morning of sharing. The swearing started, the "I hate you!"'s came full force. Unknown to me, but quickly informed, I was trying to ruin his life. How dare I! How dare I make him change his clothes, especially when he was wearing his bathing suit going on the 4th day. I somehow made it out the door, leaving my angry, distraught, almost 7 year old screaming and swearing at the computer, which at that point of time was labeled "a piece of crap" (which he pronounces cwap). Poor Rick, it was his turn to deal with Brandon's wrath. Now I'm at working, obviously not working. The girl that called out yesterday (in my opinion she was lying) she at least showed up today. She is back to her I know everything/suck up status. Hopefully we will have a good rest of the day. I will wait for this phone to ring....

A Tuesday wrench

It was a quiet morning. I hit the snooze twice, got dressed, put my lunch together, put out Brandon's meds and supplements. Kissed him, told him I loved him and to be a good boy. Gave Rick a smooch and wished him a good day (Rick watched him today, he had off from work). I drug myself off to work for yet another repetitive day. I answered phones, processed payrolls, called clients, gossiped with the girls awhile. And then it happened, like it always does, when you think it's just going to be an ordinary day, and then you hear the time stopping sound of the cell phone singing it's song. I'm thinking; Is it the doctor's office? How is Brandon? What did he do now? Is it the babysitter calling to tell me it's not going to work out? This time it was Kaylin's step mother, Jess, calling to tell me she was sick. She woke up with bad ear pain and the side of her face was swollen, what should she do? Besides for the little problem of them being in Bradenton, and I work in Port Charlotte, there wasn't a problem. Kaylin needed to see her pediatrician. We worked it, her step mother took the day off from work, drove to Port Charlotte and met me at the pediatrician. What an awesome step mother! I mean that, I know that Kaylin is in good hands and piece of mind is priceless. So she's got double swimmers ear, which is not a surprise since she is a fish in the water. The doctor had to put a little tube in her ear since it was swollen almost shut, that way she would get her meds. I smooched my baby squirrel (her pet name) and told her I loved her. Sent her off with her very capable step mother and went back to work. My day finished without a hitch. I made it home in the usual amount of time, I walked in the door and Rick had straightened up the house. I was so nice to come home to, made the evening seem less ominous. Brandon's therapist Cindy came to the house for his 5:35 appointment. I really think this woman was sent from God. She listens to Brandon and me, she doesn't judge, it seems like she truly want to help. She even acts like a human which is hard to find in the mental health professional world. We went over his behaviors and what we were doing, what we needed work on, what wasn't working. She said to me today, "Julie, I think what we're dealing with here is Aspergers". When she said it I think she expected a reaction from me. She actually seemed disappointed that she didn't get one. I'm had Aspergers in the back of my mind since he was 8 months old. I kept telling the pediatrician he wasn't right, she kept telling me he was fine. It's gotten progressively worse since then. Well that was my Tuesday, as you can tell I'm a rambler, and a scatterbrain, but that just how I am.

Introduction to The Brandon

We will start with Brandon. He will be 7 on August 4th. What mental illness does he have? I don't know. Why don't I know...no one can pin point a diagnoses. His therapist told me today she thinks we are dealing with Aspergers. His behavior support specialist says conduct disorder. Coastal says bipolar. One doctor says ADHD. Her prescribing meds doctor doesn't want to "label" him. I've also heard ODD and OCD. Everyone agrees that he has sensory integration problems. He is finally going for an OT evaluation in September. His therapist wants him to have a neuro/psych eval. We will see what the insurance company says about that. What does he do? Allot of the time he is the sweetest most loving kind boy you'll ever want to know. The other part of the time you are fearful of what he is capable of. He screams, throws, hits, swears. He whines, cries, threatens you. It doesn't sound so bad when I'm typing, or probably when you are reading. But TRUST ME it's bad. Well..this is a start. I'll work on filling in some blanks at another time.