Archive for February, 2010

Neuroburst and Duck Tour

February 20, 2010

We arrive on campus at 8:30 to meet with A’s teacher. The school is beautiful. It looks like a mini version of a school- everything is on a smaller scale- there is a library, but it a smaller room than one would expect, with less book shelves and books. There are hallways, but not as long as a typical school. The classrooms look like a regular classroom, but smaller and with only 8 desks.

A’s teacher is Miss Debbie and she is a dream come true, She is impressed with how bright A is, but also sees his weaknesses and knows how to gently push him to be independent in those areas. When we leave D comments that the school and teacher are everything we have ever wanted for A.

Next we have an appointment with Dr Kroll , but unfortunately Dr. Kroll doesn’t know and we spend a lot of time waiting for her. While we wait, we meet with someone from the business office who tells us our insurance has denied payment moving forward. Dr. Kroll has already appealed and lost. Today there will be an expedited appeal. We are told we need to figure out what to do if they still refuse payment.

D and I discuss it quickly and agree A cannot come home yet. We will have to take out a loan to cover the cost of Meridell until Dr. Kroll says A is ready for family life.

Finally at 11 we meet with the doctor. We were supposed to have an off-campus pass from 11-4, and are concerned A is waiting and getting upset. Dr. Kroll calls his unit and updates them. We are able to discuss A’s testing and meds. She reviews the results of A’s QEEG again as well as his neuropsych testing. She has two concerns- that A’s adhd isn’t being targeted, and that he is depressed and we aren’t medicating for that either. She suggests adderall and prozac. She feels with the amantadine, the aderral should be fine, in spite of how he reacted to it in the past. She will also be taking blood levels of the prozac so she can monitor it closely.

We are comfortable with this and I am relieved that A’s reactions to meds are going to be monitored by them, not me.

Dr. Kroll is very upset that we need to self-pay. “I hate that you have insurance and they aren’t doing what they are supposed to.” She says she thinks A will be here for 2 more weeks, even though he really needs more time, but she warns us that she doesn’t want us to end up in a lifetime of financial difficulty from A’s treatment. We explain that if we have to pay $500 a month for the rest of our lives to ensure A is going to live at home successfully, we will do it.

Dr. Kroll adjusts Abe’s pass to read 12-5 so he hasn’t lost any time.

We go to Inner Space Caverns and take a cavern tour. All goes well! It’s exciting down there. A really likes it. We see bats, and cave ice. He loves this type of stuff. So does D. I like it too.

Next stop- shoe shopping. We already cleared it with A’s therapist- he needs shoes and he says A should be okay in a store. She’s wrong.

Not knowing Texas stores, we choose a Texas-sized sports store- bigger than anything D and I have ever been in. I keep close tabs on A. I see his face change and check in with him, as his therapist told us to do. “I’m just sad that I have to go back soon.”

We search the aisles for a pair of sneakers. But there are so many choices, Too many. A quickly loses it. He grabs my hand and squeezes. He tries to bend my thumb. “A, let’s breath deep,” I tell him. I am trying to remember what we are suppossed to do.

“WHISPER THAT MOM!” He gets mad that I am saying things loud enough for other people to hear. I suggest we go outside but he gets even madder. “I NEED SHOES! YOU NEVER LISTEN TO ME! MOM YOU NEVER LISTEN TO ME!” He’s gone. He is squeezing my hands — I sense he is trying to use some self control, but I have to get him out of the store.

We leave and get in the car. A starts to scream and cry and curse. “YOU NEVER LISTEN TO  ME YOU NEVER LISTEN TO ME!” I remember Dr. Kroll asking me when A was admitted if he ever repeats the same thing over and over when he has a rage. Clearly this is more than a poorly behaved child. D and I agree we have to get back to Meridell. I tell A that we need to go because we want to help him and they will know what to do. He gets madder and keeps screaming that I never listen to him. He throws anything he can find. He is kicking and banging on the seats, occasionally hitting me and trying to rip the arm rests off. I am at such a lose. I am trying hard not to cry. D knows. He tells me to stay strong. I am trying. I am try using the coping skills we are wanting A to use. How can I expect him to be in control of himself if I can’t do it.

Things are still flying in the car- its a rental and we’ve only had it 24 hours– I can’t figure out where all the things are coming from. I try to gather everything as D drives.

We make it back. What a relief. A looked so scary. It was like he wasn’t even there. By the time we arrive, he is less angry but very sad. We ring the bell and explain we need their help. Miss Christy, the nurse comes out and asks A what happened. “I don’t remember.” He cries. Mis Christy talks quietly to him. “It’s okay, A. We know that you and your peers here often don’t remember these neuro-bursts. It’s okay.” She goes on to ask him details- what does he last remember, were there smells or sounds that he remembers.

“I remember going into the store but it feels like three days ago.”

Miss Christy explains that often time is distorted during a “neuro-burst.”

“I asked my mom to get me out of the store and she just wouldn’t listen. It took her so long!” I explain that we left the store immediately.

“This is probably the same time thing- what was only seconds seems like much much longer for A during an episode,” Miss Christy explains.

She has an amazing way of talking to A, helping him calm down, helping him understand this isn’t his fault. “It just means we need to keep working on adjusting your medication.Coming back in the middle of the pass was using a coping skill. You did great! If you are calm enough you can continue your pass – maybe go get a slush at Sonic.” A says he is worried he will throw things in the car, or hit. Miss Christy tells us we should make sure there is nothing for him to throw and tells him to sit on his hands to remember not to hit. “It’s okay to use these tools to help you be successful A.”

We finish out our hour and bring him back. We are all exhausted. A is so sad. I am somewhat traumatized.

Dr. Kroll calls us to discuss what happened. She asks if we think he really doesn’t remember, and D andI both agree that he probably  doesn’t. He seemed so far away during the rage.  I ask how this doesn’t happen while he is at Meridell.

“Does the potential for this sit dormant in his brain until it is triggered? I ask.

She says yes, but not to blame ourselves. It was probably a combination of  anxiety over us leaving after the visit and overstimulation of shopping- not that D and I triggered him. She also tells us she was able to get the insurance company to continue paying through the weekend and will work on more days on Monday.

It was such an emotionally exhausting visit. A was so charming and sweet. Funny and so cute. And then like a flip of a switch he was out of control. And I felt so helpless. I had no idea how to handle it.

D and I unwind with our friends who we reconnected with last time I was in Austin- we enjoy a Texas BBQ dinner and come back to the hotel completely exhausted. A quick phone call to Meridell confirms A is okay now– and then we fall asleep early.

We awake to prepare for our 6 hour pass. The plan is to pick A up at 10 and head to Austin for a “duck tour,”- a bus that tours the streets of Austin and then plunges into the Austin Lake.

A is in great spirits- I can’t believe that this is the same child who was so out of control yesterday.

Not only does the tour go smoothly, but A answers every question the tour guide asks about Texas history correctly–he’s been studying it at school. No one can get over how smart he is. He even has a discussion with the guide about the different types of amphibious vehicles. He recalls that four years ago we took a tour on a similar vehicle in Philadelphia- “but that one was a DGB.” How on earth he knows the model is beyond me.

We have a nice lunch and go back to the hotel for some animal planet. A is sad and we encourage him to use “I feel” statements. He wants to know when we can comeback to visit. We actually forgot to ask his therapist, so we’ve decide to say we will come back in two weeks, but we’ll know for sure on Tuesday when we speak with therapist.  A says he would feel so much better if he knew for sure. I feel so badly for him.

We have to do this and we all know it. He is in the right place.

Made It!

February 18, 2010

The drama started last night. D and I have been preparing H and B for our trip to Texas for a few days. They knew we would be gone until Sunday. They knew they would be staying with my mom. We made playdates and plans for afterschool. I thought we had really prepped them well.

First H’s big toe hurt in her basketball shoes. Then it was her wrist. Oh, and I couldn’t do anything right. I was about to get annoyed at her, but I  started thinking that maybe this was a reaction to my impending departure. On our drive to basketball practice, after she was done being angry at me for who-knows-what, she started to cry. And cry.

I couldn’t physically comfort her while I drove, but I tried to talk her through it. “H, it’s okay. Talk to me about what’s going on.”

“I’m scared. I think you aren’t coming back, just like when you went to Atlanta and when you went to Texas last time. Something terrible might happen while you are gone.”

Oy, my poor girl. I reassured her that we will be home on Sunday and that nothing will happen while we are gone- she will be well taken care of. Somehow it works and she goes to basketball practice, but the slightest problem sends her crying into my arms. I try hard to validate how she is feeling, but to also let her know she can control her feelings and finish practice.

Just as we had rehearsed, after practice I bring her to my mom’s where B is already tucked in and waiting for my goodbye kiss. He seems to be okay with everything. H not so much. I eventually leave with promises of special time together, Texas souvenirs, and lots of phone calls.

I worry that she has a bigger problem than we are thinking it is. But, I also think it will either pass as things get better in our family, or, we will see that she needs more than an hour session every other week with a social worker.

I come home and pack. We are dog, lizard and kid free- but too tired to relish in it. And we have to wake up at 4:30.

We are up and out and at our gate by 5:30- we get on our plane and leave without a hitch. We are on our way! When I let my mind wander and think about where we are going, I get teary. It’s been a long time since I’ve been sad about our circumstances. The airport, the plane, it all brings back memories of flying with A desperate for help. Fortunately, I am exhausted and fall asleep.

“Ladies and Gentlemen, you are going to love this. We are having problems with  the pressurized air and will need to turn the plane back to Newark. We are sorry for any inconvenience.” D and I both open our eyes wide and check our watches- we’ve been flying for about 45 minutes- it will be a 2 hour trip to nowhere!

The plane is abuzz with talk about connections and other flights. We are told if we hurry when we get in we might catch a flight to Houston. But the connection to Austin won’t be until 3:30, or, most likely, 6:30 in the evening. I think about A trying to do his schoolwork -excited that he is going to see us around 3 today. D and I decide we will rent a car in Houston and drive to Austin. If we are lucky we will make our 3pm family therapy appointment.

We make the Houston flight. We even get free tv for our troubles.

We’ll make the best of this and get there in time. I watch tv and relax.

Breaking news- a plane has crashed in Austin. My first thought is that I am glad it wasn’t us! As I watch the news I realize the plane crashed very close to the highway- the same highway we need to be on to get to our boy. The highway is closed and when it reopens there is talk of traffic jams.

Somehow the time passes, we get off, and we hear some quiet chatter about an Austin flight leaving right away. I am determined to get on that flight. We find out the gate and make a run for it. I tell the woman at the desk that we have a ten year old son in the hospital in Austin and we have to get there ASAP. I start to cry. D rolls his eyes at me. I’m really not being overly dramatic. The tears are real. I just need to get there.

Drama or no drama- it worked- we get on the plane and in an hour we finally make it Austin. We are half an hour late to family therapy, but it’s fine. A looks great! He needs a haircut, his pants are frayed and under the heels of his shoes, he’s wearing beach shoes and his sweatshirt is not warm enough- a PERFECT 10 year old boy!

We hug and hug. I am choked up. He is teary. His therapist reminds him to control his emotions. D asks if she is talking to me or A. We all giggle and hug.

The family therapy session revolves around A’s progress- there’s been a lot- he is more open to using his coping skills and he is able to control his emotions now. The therapist credits A’s hardwork and the meds. A again tells me that within days of starting the amantadine he is “confident in controlling myself.”

A has been working on a list of expectations for when he comes home. It’s nothing we haven’t seen before- it’s a daily schedule and a list of acceptable behaviors – but this time it was A who designed it. I think that makes a big difference.

We also discuss the events of the next few days: today we hang out on the campus and after dinner A returns to his unit. Tomorrow D and I meet with A’s teacher at 8:30, Dr Kroll at 9 and then we head off campus with A at 11. He and his therapist researched local things to do and A chose a cavern tour.

The therapist tells us it is okay if A gets emotional, but, with our help and prompting, he needs to be able to pull it back together. If he can do that, he can have a pass again on Saturday. We are all excited!

We spend the afternoon walking around campus. A is collecting “fossils”- dirt rocks he is finding and shoving into my pocket. D tells him he can only keep 5. A tries to negotiate, but we remind him that accepting limits is part of being in control of his emotions. He accepts it–although later he brings it up again. It’s hard fro him not to dwell on things- we know that–but he doesn’t perseverate and carry on too much, so we move on.

We play pool in the family visitation room, we play with the campus cats that are wandering around. We have dinner together. A few times I see that A is getting anxious and I do what the therapist has told us to do. “A, it looks like you are getting anxious. Let’s take a few deep breaths together.” He does and it passes quickly. It’s almost 6:30 and A reluctantly tells us it is time for him to return to the unit. He hugs and kisses us and cries, but he walks through his cottage doors and says he will see us tomorrow.

Phew. We did it. I think he is doing so well. D agrees but cautions me that we’ve seen this before. I want him to join my fantasy of living happily ever after. But, he says he wants to protect ourselves. I remind him that this time is different. This time he is properly medicated, this time he is in a long term program and this time he won’t come home until we have the right school set up. D agrees we can be hopeful and optimistic.

We head to the hotel and H calls. She cries — she can’t stand being without me. I say my usual reassuring stuff.  It works and I can finally go to sleep!

Two More Days and Counting!

February 16, 2010

We leave for Texas the day after tomorrow. I am so excited- but so worried about saying goodbye. As usual I need to remind myself to stay present. We haven’t even gotten there and I am already wondering how we will leave!

A called tonite and H and I did a Mad Libs with him. It was a fun thing to do. He sounded so cute on the phone. It was one of the first times he and H spoke since he left. They were nice together. It was really heartwarming, even if it’s not reality. At the end of the call A cried when he hung up. I tried to hide it, but I cried too. I’m really missing him. I also worry, the longer he is gone, while it is going to help stabalize him, it will be harder to integrate him back into the family.

I just can’t wait to see his face. To see his smile-  I hope he smiles. I am realllooking forward to meeting his teacher. Can’t wait for this trip!

They See It

February 13, 2010

The days have been rollling by. We speak to A on Tuesdays and Thursdays and again on Saturday and Sunday. His voice is strong and sometiems full of excitement. He is happy and sounds so good. I am suprised when  A calls crying “I can’t do this anymore.  Get me out of here. I need you!” I don’t really know what to say but I try to distract him and talk about our visit next week. “And then I porbably won’t be able to see you for another month!” He gets hysterical again.

The truth is, we were hoping to increase our visits once given the okay, but I got a phone call from Meridell telling me that our insurance thinks A is ready to come home! They ask if private pay is an option. I start to cry. “I feel like it is a matter of life or death, so it has to be an option.” I start doing the math –private pay really isn’t an option, but I am referred to a company that gives loans for just this thing. It is too soon for A to come home.

A’s therapist calls to say she had a very frustrating session with A. “He just cannot be reasoned with.” A is very rigid in his thinking- you cannot negotiate or convince him of anything different than his preconceived notions. I am so glad they see this. And, I love where this takes them. “Dr. Kroll said that if I am frustrated, just think how frustrated poor A must feel.” I smile. He isn’t being seen as misbehaving or bad– she continues to say that when they reveiwed A’s neuropsych results, his perceptual reasoning scores prove that he physiologically CANNOT be reasoned with.

“This can happen because of two things. One is severe depression. The other is being so bright and verbal and understanding you can go on until the other person backs down.” I’m not sure I completely understand this– I thought the perceptual reasoning was how well one does with block design and spatial tasks, but I really think they are onto something. Dr. Kroll wasnts to administer a few more neuropsych tests and then will determine if A is depressed. If that is the case, she will start prozac (AGAIN!) I am not scared this time. I am hopefult his is the route they will go. They think the amantadine will provide a buffer from manic episodes. I remember A being so much more flexible when he was on prozac– I welcome it and I trust that they will carefully monitor him- more than I ever could.

The good news is this might be what it takes for the insurance to continue paying.

In my mind, D and I visit next week, and go back in two weeks. Then we come down with B and H and stay for an extended period- maybe a week. Give A a good dose of family life again so we all know what to expect when he is discharged.

Meridell has said that A needs a small class setting, low stimulation and a lot of 1:1 learning. I need to have this set up before he comes home, but the schools won’t admit him if they haven’t met him yet. So, I have to figure out that snafu.

I wish I could say I can’t wait for him to come home, but it’s been so easy without him. I am so worried that coming home will trigger all the old behaviors. I discuss this with his therapist and she tells me that we will employ consequences when he is oppositioanl. I explain that consequences make things worse- he will explode. She reassures me that that is where the medication comes in. “He won’t do that anymore. The medication is there so he doesn’t get so emotionally reactive. You’ll see.”

I breath deep and wonder what’s next.

Family Therapy

February 9, 2010

Today was a family phone therapy session. The sessions aren’t what you would think family therapy would be. The therapist called D and me first and talked about how A is doing- he is doing great. Too great. They want to see some of the behaviors. I knew they wouldn’t. I am trying not to get upset at how well he behaves there. She asks us why we think he isn’t out of control there. I tell her it seems to meet all his needs– special needs school and a very predictable “home” enviroment. She tells us that although the routine is predictable, the kids aren’t, but it doesn’t seem to phase A. As a matter of fact, a few days ago a boy asked him to play cards and when A said no, the boy threw the cards at him, but A didn’t do anything.

She reviews the results of A’s neuropsych testing- 97%tile verbal ability and 5th %tile in processing. Same as his eval a year and a half ago. It is consistant with ADHD and Non Verbal Learning Disability. Nothing surprising there. The neuropsych is recommending a small classroom with minimal distractions.

A is brought in on the session and the therapist asks him why he thinks he isn’t having any outbursts. He says since he started the amantadine he feels, “more confident to use self control.” It’s always a tricky answer- they don’t want him giving the meds the 100% of the credit. She discusses with A how he reacted to the cards incident. She wants him to discover that he used coping mechanisms and htat if he can do it there, he can eventually do it at home.

It’s a good session. We are all looking forward to next weeks- in person! D and I are going down on the 18th and staying for three days. They are considering giving A a pass to go off campus with us, in hopes he returns and meltsdown. Its ounds terrible, but they are upfront with him and tell him that if they see the behavior they will be able to tell him what he can do at home to avoid it.

He remains strong that he will not ever misbehave there.

A Better Day

February 5, 2010

D had the day off. It was nice to do the morning routine together. We went to the gym together. I swam. Not much. But it was great to get back in the water. I went into the eucalyptus steam room too. Loved it!

H came home from lunch today and she was in a great mood. Back to school no problem–but wanted me to pick her up at the end of the day. I told her I wasn’t sure I could. Turns out D picked her up took her to buy new sneakers  and B and I went food shopping. H called and said they were on their way home and wanted to make sure I would be at the house waiting– but I was still on line at the grocery store. She cried. “You have to be home when I am home! Please!!!” Oy. What a mess. I reassurred her that I would be there shortly after they arrived and that nothing bad would happen when I wasn’t there.

Tonight D took her to a hockey game. When they were leaving H told me not to go anywhere. “Make sure you are in the same spot when I get home!”  I promised and she went.

Today I can handle it. I see it for what it is. I feel good, glad I swam and had time alone with D. One day at a time.

The New Me

February 4, 2010

After I got home from Texas I was feeling pretty good. I got rest. I got time to myself. I spent time with H and B and D. I got into a “new normal.” But, over the last few days I’ve started to feel different. I’m numb. I’m annoyed. I’m crying. At the drop of a hat I cry. I am pretty much hiding it from the kids, but it doesn’t take much.

I don’t know if it’s me or them.I feel like H is so diffiuclt lately. She doesn’t want to go to school. She says she has no friends and everyone hates her. She says she is ugly. She hates all her clothes. She hates all the food we have. She says we hate her. She wasn’t feeling well and she wasn’t sleeping well. I chalked it up to that. Last night she finally had a good night’s sleep. I was so happy this morning, envisioning her smiling and well rested. But the minute she woke up she was whiney and demanding. It’s too much for me. That’s what I want to tell her. “Don’t you know I can’t take anymore from anyone?” But I don’t. I’ve decided she needs the compassion and the warmth that I gave A during his hard time.

“Good Morning Sweety! You must feel better after sleeping all night.”

“”No. I feel sick. So sick. I can’t go to school. I am cold. I am hot. And, you lied to me. You told me that you were going to buy me art supplies and you didn’t”

“Come,get dressed- I’ll help you. During breakfast we’ll make a list of hte supplies.”

She starts to cry, “You neer do what you say you will!”

This is the part that is too hard. I feel like I damaged her. Like she will never get over me not picking her up from school for lunch the daywe put A in St Clares, or when she came home to school to find i left for Atlanta and then Ididn’t come back for so long.

Some how I manage to get her to school and I drop off B who is also reluctant to go.

I have a short list of things to accomplish and I do them, but I don’t feel accomplished. I feel like crawling back into my bed and crying. Things seem so hard. I should exercise. Ishould eat better. I shoudl sleep more. I think I am getting depressed. I know what I should do, but Ican’t seem to do it.

I call Meridell. All is well there. A is doing great in school. He is working on a powerpoint presentation. The teacher asks me what things trigger him in school- they would like to try to push him a little so they can work through some of the behaviors. I tell her that he has a lot of trouble working in groups. She hasn’t seen this yet.  I cry. I just don’t understand. Did I make this all up? I know, rationally, he is getting just what he needs there- a small classroom, 2 nurturing teachers, low stimulation. That is why he is thriving. That is the good news. It is also the bad. What if we can’t replicate that at home?

Today I really miss him.

H is in a better mood after school and she and I go for pedicures together. I usually hate that. I hate spoiling her like that and I hate that she intrudes on my special time, but today it seemed just right. We had fun. We both needed it.

A and I speak in the evening. He tells me about his power point project. He sounds excited. He is really learning, and I am glad. His brain is getting a break from all the craziness and it is so good. I tell him D and I are coming down in the 18th. We are both excited.

Moving Along

February 2, 2010

H was home sick today. I didn’t really believe her. But, I figured if she needs the attention, what the heck. Turns out she had a fever and doc suspects strep, so I’m glad she stayed home. 

Things are so easy with just H and B. I can’t believe this is how the rest of the world gets to live everyday. I can get used to this (actually I have!)

With the physical distance beings so far, I’ve managed to put a lot of distance emotionally/mentally between me and A right now. It sounds sad. I guess it is, but I need to make the best of this time. He’s safe, he’s functioning far better than he has in a long time. As a matter of fact, I put so much distance between us, I was shocked when 2 pm came and it was A’s therapist calling for Family Therapy–I guess I don’t win any Mother-of-Mentally-Ill-Children Awards today! But, I pretended I had waited anxiously by the phone (H and I were actually beading necklaces.)

A’s therapist is out this week (we knew this,) so we had a different person. A tells her that the only way things will go well is if he and I live apart from D, H and B.

“Really? That sounds sort of selfish and I know you aren’t a selfish kid. Somehow we are going to need to figure out ways to help you deal with your anger, because anger comes up for brothers and sisters everyday.” I think she was pretty expert at handling this. I like her.

“No. There is nothing I can do. Nothing works.” He is so stubborn. I am relieved not to have to deal with him alone today. I am pretty much silent except for times when prompted, “Mom, Dad, what are your thoughts?’ or, “Mom and Dad why don’t you chime in.” And, today, I let D do a lot of the talking. He outshines himself today.

“A, everyone goes through hard times. You just happened to do it younger than most and you’re actually lucky because we were able to find Meridell and we’ve heard from parents all over the country about how it helped their kids. It’s going to be okay.”

A tells us all that since the amantadine two days ago he doesn’t have any feelings. The therapist makes note of that and will tell Dr. Kroll. Suddenly A starts to cry- quite the opposite of no feelings– he cries a lot today. I cry on the other end of the phone- I don’t think A knows, but H is right next to me. It’s been awhile since she has seen me cry-I’ve actually been all smiles for a while now. I feel helpless. I want to reach across the phone and hug him. I want to yell at him “STOP ALREADY! Just behave yourself.” Why do I always want to fall back on that one? I guess it is because I worry that all the meds and therapy in the world’s best place just may not work.

But that means I have given up hope. And Aunt and Uncle taught me that I have to have it. So I do. I just keep going and I tellA its going to be alright- he is going to be alright.

Tonight we get to call and he sounds somewhat okay. A little sad. He cries a little. He tells me he was moved into a different group and he doesn’t like it. A asks that I tell staff, so I call back.

I speak with Jeff who can’t get over how smart A is. We hear this all the time. It’s actually kind of annoying. Cause, who really cares how smart you are when God tells you to kill people? Or that the only place you are able to function is in an institution. Jeff is concerned that A is doing so well that the insurance won’t keep him. I try not to think about that. I have hope. This is where he will get well and it will take as long as it needs to.

I tell Jeff about the new group and he will process with A. Because A turned 10 yesterday he was moved up. Jeff appreciates the feedback and wants me to call him more often to report what A is saying so he can put it in the chart for the insurance company. Jeff tells me that when he is doing 5 things on the unit he never has to worry that its about A. I don’t know whether to laugh or cry. Is this confirmation that A can’t live at home? I have to remember that other people have told me it can take weeks until they see anything.

Jeff asks about A’s meds and I tell him about the amantadine. “AHA! That’s like a miracle drug! We may never see anything now!” Laugh or cry?

Happy Birthday!

February 2, 2010

A turned 10 today! He sounds really good on the phone. I was so worried about his birthday this year- he wanted to plan a big party- but he really had no one to invite. I am relieved that he is in Texas- they had a cake for him and D and I will celebrate again when we go visit in a few weeks. A is okay with it. I am really surprised.

Today a report came from Meridell explaining the QEEG results and the implications:

“This is considered an abnormal study due to the isolated segments of aberrant reactivity in left temporal region during long latency auditory evoked response as well as aberrant reactivity occurring in right temporal/parietal region during long latency visual evoked response…P300 (cognitive evoked) responses: absent with frequent; present with infrequent target stimuli.”

The report goes on to say that the absent P300 response supports a diagnosis of ADHD. The aberrant reactivity is suggestive of neurophysiological problem which can partially explain some emotional or behavioral difficulties.

“A QEEG finding of aberrant reactivity leads us to give a diagnosis of Mood Disorder Secondary to a General Medical Condition (Cerebral Dysrythmia.) Cerebral Dysrythmia is treated with anti-convulsant medication but is not a true seizure disorder.”

Also helpful in the packet was a paper entitled, “The Neurobehavioral Program in Contrast With Traditional Treatment.” It really underscored to me what has been wrong with the various approached we have tried with A:

Traditional Programs use confronting, interpreting, structured consequences and the NP Program uses redirecting, behavioral contracts and structured consequences.

A traditional setting is lively  and cheerful, normal paced, large group and long sessions. In contrast, the NP setting is low stimulation (bare walls and quiet,) slower pace, small group and short sessions.

Traditional staff attitudes include ideas like the patient can learn from mistakes, needs to make choices, must become more self directed, and must take responsibility. The NP staff attitude believes that the patient does not learn from mistakes, should not be forced to make choices, needs more external direction and is given responsibility in small steps.

I finally feel like A’s issues are being addressed appropriately, and that what I instinctively knew about him has been given a name and we were actually given a handbook on how to deal with him.

This all gives me even more confidence in Meridell and our decision to have him there.

The rest of the family is really enjoying the break from him. I’m not so guilty about it anymore. I am just enjoying it. The afternoons I used to dread because I couldn’t plan enough activity, is so nice and slow paced. We have snack and do homework, play a game, run an errand, watch tv. The house is staying clean and organized. I am not going to deal with how to bring A back into the picture until he is ready to be here. Instead I am going to enjoy what we have right now.