Archive for March, 2010

The longest vacation ever

March 31, 2010

It’s Spring Break. Who’s idea was this anyway? Clearly someone who doesn’t live in my house! We solved our problems of fighting and boredom,etc with our “divide and conquer” strategy. D and A headed to upstate New York today for the first day of trout season tomorrow. They will stay at least two nights- more if A is into it and D is able to manage him.

B and H and I are doing stuff close to home, and are going to a family resort in the Poconos tomorrow for an overnight– got a good last minute deal – they are really looking forward to it. I am looking forward to not being the entertainment!

It’s a relief to have some time off from A. Although he hasn’t had any major outbursts, he is so inflexible with his routine and pretty oppositional. It’s exausting. H was getting pretty upset that she had to stay at my mom’s again while D and I took A to a school interview. “It’s always about him! It’s doctor’s appointments, school appointments. It’s not fair!” Well, at least she is articulate. The next few days should do her good.

We had some great news– A was accepted into another school and we were able to choose the school we wanted, and our district has agreed to send him! Now it’s just waiting for funding and transportation to be arranged. I am pleasantly surprised that the powers that be in our district seem well aware of the immediacy of our situation and it looks like they will move on this quickly, but I’m not ready to let my guard down 100%.

It’s a strange feeling though. Two schools for “emotionally disturbed” children and “severe psychiatric issues” find my son appropriate for their programs. Do we dance or cry? I find myself wondering what they read or heard that makes them think this. Really, it’s all my reporting. Maybe I’m wrong. Maybe I’ve exagerated. But, Meridell saw the issues (not the raging, but the other stuff.) They lived with him for two months. I didn’t make that stuff up.

I look forward to the day my mind doesn’t wander to the DSM and diagnostic criteria. I look forward to not having flashbacks of psychotic episodes and rewinding conversatins with therapists- “what did they really mean by that?” I look forward to wearing makeup again. Ihaven’t warn makeup since Oct 30th- the day A was admitted to the first psych hospital. I would awaken each morning, aware of what we were facing and not wanting to have racoon eyes from dripping eye liner. Each day I try to decide if I should start putting on makeup again and each day I decide I might cry– although I’ve had a string of a few tearless days lately. Maybe once he is in school I can start again.



March 28, 2010

Sigh. Today began our Spring Break- not really till Monday, but we ‘ve got a weekend on either end to get through. D and I know it means staying calm, organized and upbeat. That lasted an hour or so.

Everyone slept in, thanks to a late night of Kid’s Choice Awards on tv. Around 9 this morning they each migrated to our bed. It was pretty cozy at first. It didn’t last long- I guess it was a little too cozy. But D and I had a plan- a plan A couldn’t refuse (or so we thought.) First, a breakfast cooking project– A has always wanted to make crepes so this morning I was going to help him. Next would be cleaning their rooms so we could head out for a day of fun. The fun would begin with a trip to a pet store to play with puppies, fast food of their choice, then off to Toys R Us to buy nerf guns and ammo and then to a park to have a “family battle.” We designed the day for all the kids to enjoy, but we thought it would be especially motivating for A. He’s been having a hard time lately when we stay in the house, but he ‘s been doing very well in activities out of the house. The only problem is he is so oppositional that we can’t always get him out of the house.

Today we discuss the plan with everyone — I need to give A a written schedule because he can’t always remember what we are going to do next (probably a function of his poor working memory and sequencing issues,) but I haven’t written it yet.

A didn’t want to cook with me– so H and I made the crepes. Breakfast goes smoothly. Now off to the pet store- I convince B to stay with me and go grocery shopping so D doesn’t have all three kids alone. A is watching tv and won’t leave. D does everything right. He speaks calmly, he is encouraging. But A won’t budge. I feel badly for the other two kids who have done everything right and now we all are stalled waiting for A to decide he is ready.

I tell D to take H and B. I will take A with me. He has to stick with the family schedule. I’m frustrated because we aren’t asking much of him, yet he is digging in his heels. Theoretically, he is medically stable, although I am beginning to have my doubts. If he’s stable then he has to be held accountable. This is the plan. You are part of a family. You do the plan. I am sweet and nice about it, but this is the way it is. Only, it’s not.

He will have nothing to do with going shopping (the rest of the family has already left for the pet store.) A says he didn’t know about the pet store. He is upset because he wanted to go. I can’t give in and take him there to meet the rest of the kids. I really feel like if we stick to this he will see we are serious and hopefully he will  rise to the occasion. I tell A that the tv is going off and staying off for today and that he and I going shopping.  No dice. I explain we will sit at do nothing until he agrees to follow the schedule (which I have finally written out for him.)

I ignore him for the most part. I don’t want him to think he can stay home and play with his favorite toy- me.

D comes home after the pet store trip and he will stay with A while I take the others to get lunch if A won’t stay on schedule. A agrees to come with us he is grumpy to begin with but gets better as time goes on. We get drive-thru and head to buy our battle supplies. We discuss with the kids, mostly for A’s benefit, what to expect at the store, and if anyone feels overwhlemed we will go out, take a break and then come back in. All agree and we head out.

There is a glitch in our plan- it’s raining so we can’t play at the park like we originally planned. D and I cave and tell the kids we can play in the house which means a mess and possibly A melting down– somehow I picture running around the park shooting each other as a much more liberating experience than doing it in the house.

Toys R Us goes pretty smoothly except it’s obvious, in spite of our best efforts, A is overwhelmed. I try  Meridell’s advice of taking him out and coming back in, but when he gets in one of these moods, he isn’t going to comply with going out, so we just try to get through it as fast as we can.

Home– and we all load our new guns and the fun begins– it’s so much fun that D and I are falling down from laughing so much. It doesn’t last though. A gets frustrated by his gun malfunctioning and quickly deteriorates the heavy plastic gun becomes a real weapon and we have to wrestle A to the ground. We put him in his room- but he is throwing and breaking things so I go in and restrain him. It’s bad. He’s completely out of control.  I never know what to do – do I tell him he will have to go to the hospital if he can’t control himself? Do I show him I can handle anything he throws at me (literally?)

It eventually ends with A falling asleep. It’s not the first time and I worry that falling asleep is a sign of seizure. He was so “out there.”

I am frustrated. I feel like we made such a hard decision to send him to Meridell- and once that was done he should have stayed for much longer (although that isn’t how their program works.) If we were to bring him back to a residential program I think it would be so traumatic, but we are back to what is becoming our usual- trying to hold on until we get some help. But no matter what doors we are knocking on or what phones we are calling, no one is answering. I don’t know how long I can continue to get hit, bit and punched in the name of keeping us safe and letting A know it is going to be okay.

I also don’t want today to cloud how much progress there has been. There really has been. But today was just too much.


Rolling Along

March 24, 2010

Things have significantly calmed down since we discontinued the adderall. There has been no raging, although a few acts of aggression, but they are relatively minor. There is opposition, but I think that is related to not treating the ADHD now. Big bummer. It takes a lot of energy to get A to do what you want. It’s  a lot of preplanning and prepping and then sort of manipulating him. For instance, it’s a shower night tonight. I tell him in 10 minutes its time for a shower and he doesn’t want to do it. “It’s part of your daily schedule. It’s not a big deal.” He agrees but has to go to the bathroom first, which takes a long time. When he comes out I say, “Great, come, let’s get you in the shower now.” And he digs his heels in again- “Shower? You never told me it’s a shower night!” It’s really frustrating to say the least. I am going to start using visual schedules with him again to help with this. The only problem is that if it is on the schedule then A can’t seem to deviate if we need to. “It says Tuesdays are shower nights! We aren’t home but we HAVE to stick to the schedule!”

I keep thinking about what A’s Meridell therapist said, almost in riddle form– she wants us to go to therapy to learn more about A’s diagnosis of PDD NOS so we can better understand him and how to handle him. All well and good, but I wish she would have just spelled it out.

I’m tired. D is tired. Next week we are all home for Spring Break. I wish we could get away to the beach or something. I could use a vacation!

Failed Experiment

March 22, 2010

After a weekend without adderall and without any major behavior issues, we gave A 5mgs of adderall in the am and another 5mgs at 1pm.

Our morning was great. A had an appointment with Dr. Hubscher in his Cedar Knolls office, which is about half an hour away. He tolerated the ride with no problem. He played a hand held video game– I attribute that to the adderall. This weekend, sans ADHD meds, he never played any type of games, didn’t measure his rocks, or do anything else that required sustained attention, but, he also was sweet, easy going (well, for A, anyway,) and wasn’t aggressive or angry at all.

Dr. Hubscher was amazed at the difference. He couldn’t get over how A had changed. “Clearly, the aggression was from the adderall. The difference is startling.” I am really glad he witnessed it, otherwise I could be convinced I made it up.

A has trouble focusing on school work, so I don’t push it too much. We do spend a lot of time measuring rocks and recording their information. While we do this, the words “narrow interests and repetative behaviors” comes to mind- diagnostic criteria of autism spectrum disorders. I wonder if A will ever find a friend who wants to do this with him, or am I doomed to find the volume of pepples in our driveway forever?

I notice that around 3ish A is starting to get a little agitated. I try to get him hooked into a tv show, and it works for a little while. I am worried because it’s time for everyone to come home.

He watches tv through homework time, which is great because I can give H undivided attention. I come downstairs and sit with him for awhile- D and I are trying to give A positive attention so that when he is quiet by himself, he is praised and given our proximity. It’s easy to shut the door and not do anything until he pipes up. I notice A is getting more agitated by the second- probably the adderall is wearing off and he is rebounding now. We talk about it and I give him a benadryl to “take the edge off.”

H comes down and her presence is annoying to A. But H won’t move to the other side of the couch. A isn’t wrong, H isn’t wrong either, but it could get ugly– and it does. A hits H – I grab him and tell him that if he can’t keep his hands off people he has to go to the hospital. Of course, (DUH) this incites him even more. “You told me that I won’t go to the hospital because it’s the adderall!” He’s right. I try to back peddle and explain that no matter the reason, he needs to be taken to a hospital and be sedated if he can’t control himself.

This leads to a two hour restraining session. I keep calm though. I tell him its the adderall and it will wear off soon, but he has to try to do things to calm himself. That suggestion is met with curses and attempts to bite and head butt me. D keeps the other kids upstairs for the most part, but they do wander down to us on occasion. I want to say I never will understand why, but I do– they want my attention. They want to see what is going on. I tell them that A is having a reaction to medication and it will be over soon.

I text D and tell him I think we should call an ambulance and have A taken to the ER for sedation. I got this idea from the Meridell staff who told me to do that if A because a threat to himself or anyone else.

He’s completely out of control– really trying to hurt me. I hold him, but try to ease up every once in awhile to see what he will do– but it’s not good. D doesn’t think we need the hospital. He calls Dr. Hubscher who agrees with him. More benadryl and keep holding him (easy for them to say!) I keep telling A this will pass. I am here. D is here. I can’t believe how long these episodes can last. I tell A he has to take another benadryl or we have to go to the hospital. He takes it and I tell him he has 20 minutes to calm down. Slowly he starts to relax. But, he gets revevd up every now and again, for seemingly no reason. At one point he head butts my jaw and it makes me cry momentarily. Everyone tells me I have to be strong and can’t show him my emotions, but I can’t help it. And it actually made him stop. He fell to the ground and layed there. I cover him with a blanket and he asks if I am okay. I tell him I will be. He is done and he is hungry.

D is getting the other kids ready for bed. I give A some food and D watches tv with him while I put H and B to bed. I am so tired. I can’t believe this.

Everyone is successfully asleep and I cry. D is so tired but we talk a little before he falls asleep too. He says it was a pretty mild episode from an outsider’s point of view- “We’ve had worse.”

Well, no more stimulants for A.

Another Great Day!

March 21, 2010

Yep! He did great today! Of course there were some issues, but they are helping me understand him. I noticed that A got very frustrated when I told him to first “do that” and then “the other one.” He got really stressed, and looked like he was going to meltdown, but he didn’t, and he was able to tell me that he didn’t understand what I was referring to (I had pointed at what I was talking about.) I think this is his problem with pragmatics. I have also realized I can’t give him spatial directions (“look under there,” etc.) This makes sense since he has such poor spatial ability.

B and A were wrestling today. I was trying to get them to stop- but not soon enough. A bumped his head and immediately he went from horsing around to wanting blood from B. D and I managed to calm him down, but now I can really see where he is still out of control.D accidently pinched A’s finger and the same thing happened, A immediately flew off the handle and started to hit and kick. He stopped quicky, but he insisted D did it on purpose– and it is so clear that when something sets A off, he is on auto pilot.

Other than those instances, the day was fun. We did a lot of bike riding and playing outside. It’s a full time job keep A busy and active. I can’t wait for him to start school, but until then I have to just keep going. D has been amazing with A since he has been home. It is so helpful. I turn to him when I am losing patience and really feel like I can trust him to handle A and deescalate things.

A and I were talking about adderall today and he said, “Since we know it is the adderall that made me act like that, does that mean if it happens again we  just stop the adderall, I won’t have to go to the hospital?” Poor kid.

Tomorrow we have a 10am appointment with the psychiatrist. I am praying A will go without issue. Our next step is to get an inhome behaviorist to work on a reward system and help us with behaviors at home. 3 good days under our belt is just amazing!


March 20, 2010

I am pleased to announce that we have had two great days in  a row! We didn’t give A any adderall yesterday and the difference was incredible. He had no big outbursts and limited opposition. The only problem was that he couldn’t focus for a second. There was no use even attempting school work. We sat down to do a few math problems and he couldn’t even get through one in fifteen minutes. A was really hyperactive also. I’m not sure if it would be considered manic or hyperactive, but he was on the go and you could not stop him. If he wasn’t racing through the house he was opening every draw and every cabinet.

We took A for a school interview and they accepted him! But, it’s my second choice – we visit my first choice next week. Even though they have accepted him, our district still needs to agree to send him. But, it was a great feeling to be moving toward the ultimate goal of getting him back in school. D and I were both very surprised when the administrators asked us to step into a different room so they could get to know A, and he didn’t flinch.

A’s only problem yesterday was after the school visit. He was hungry and couldn’t decide what he wanted to eat. He ultimately ate a burger even though he didn’t like the bun and the pickles weren’t the kind he normally eats, but he ate it! He didn’t throw it at me or try to lunge at us.

The day went so well we decided to buy tickets for all of us to see a movie. But when the time came to actually go, A didn’t want to. I stayed home with him and he did have a minor burst of aggression–pretty much unprovoked, but I was able to talk him through it. He fell asleep at 8:30 and didn’t wake up until after 9 am this morning.

Although Dr. Hubscher suggested we give A a smaller morning and afternoon dose of adderall today to begin figuring out an optimal dosage for him, D and I decide to hold off. Let’s get a few good days under our belt. There is no need for A to focus today- it’s Saturday. And, if he does get nutty from it, let’s do it on a day the other kids are at school. We go to the dog park this morning. Perfect weather and fun activity. A is no problem there. We have B with us and they get along fine. It’s there that I start thinking about A’s amantadine- I know very little about it, and there isn’t much on the internet about it. He takes a second dose at 2, so it must be short acting. That must be why we are still seeing some dips in behavior, like last night. I also remember reading or hearing that it works in conjunction with adderall, so I will call the Meridell doc on Monday and see if she can help us fine tune things.

The difference in A without the adderall is so clear- both good and bad. He isn’t a raging lunatic. But, he is impulsive and loud. So loud. He spends a great deal of time today just screeching. No reason. H is beside herself and follows him around crying. We tell her to move to a different room, but she insists he stop instead. I remember fighting with my brother and sister and my parents telling us we had a whole house to be in, why were we all in one room? Well, history repeated itself today, but it was okay. It was normal sibling stuff.

We did a lot of bike riding. We went swimming at the gym. We played tag outside. A played fine – never argued at all.The only issues were before his morning meds, mid afternoon and then about an hour before bedtime– all times when his meds were wearing or worn off.I feel like we are getting a handle on things.

Tonight A gave out little toys that he had collected for B and H. He got them at the Meridell Point Store- during the week he earned points for behavior and could trade them in for little trinkets. He explained to B that he saw a prism at the store and thought of him and he gave it to him tonight. I was so touched. I had tears in my eyes, and for the first time in a long time, they were happy tears.


March 18, 2010

D stays home with me today. I need back up. A is oppositional. I need to get A and H to school but I can’t count on A agreeing to go with us.

We met with Dr. Hamway, our new psychologist yesterday and I asked him if rather than battling with A to follow the schedule we had designed with Meridell- the one that D and I felt like was setting him up to fail– would we be better off creating a schedule that he can’t refuse- give him some experience being successful. Dr. Hamway agrees- “Do whatever you need to to keep things going smoothly until he can start school.”

So, rather than demand he get in the car in the morning, and then starting an oppositional cycle, take the pressure off all of us. I bring H and A to school and come home to take a nap. I need to get more sleep if I am going to handle what is being thrown at me(sometimes literally.)

D takes A for a long bike ride. It’s so good for A. D is really helping out so much.

A comes back in a good mood and I tell him after a short break we will start schoolwork. He willingly comes to the table and we talk about the plan for the day. He runs through the order of his schoolwork.   I am glad he is so willing to do his work, but I tell him that we have to leave shortly for a psychiatrist appointment. That throws him into a complete frenzy. He claims he didn’t know about it and now he won’t go. When he hears that isn’t an option he tries to bargain with me- he will go tomorrow, he will go in 1 hour,etc. I try to draw him back into school work, but it’s pointless. He keeps up the negotiating and I stand strong. It’s time to leave for the doctor and he won’t budge.

Togther D and I manhandle him into the car. D drives and I hold A. Given the opportunity he tries to bite me (sometimes successfully,) kick me, pinch me, etc. He is also trying to open the car door. He says he will jump out and run home. I tell him it’s too dangerous and he says its okay he wants to die. D and I keep talking, prompting him to use his coping skills, it doesn’t help A, but it helps me. I like having D so calm and supportive.

It feels like we spend a week in the car on the 30 minute drive but we finally arrive. As expected, A won’t get out. D carries him in and we make it into the office where I have to sit on A to keep him from running out. At one point he grabs my pinky and bends it- we both hear it crack and he looks upset. “A, don’t hurt me because you will feel badly after.” His response– “Okay, then I’ll hurt Dad.” And he lunges at him.

It’s finally time to go into the Dr. Hubscher’s office. We drag A in and all sit on the couch. A is reluctant, but not fighting us anymore. We run down all the positive things A has managed to do since he is home and Dr. Hubscher runs with it. I am glad. I don’t want to sit there and run through all the bad things. We do end up discussing his rages and out of control behavior, but it’s not in a way that I think is upsetting to A. A is uncharacteristically quiet- won’t talk or look at the doctor.

We start discussing the adderall and finally A speaks up. “After they raised my adderall at Meriidell I couldn’t stop paying attention to somethings. It makes me feel stuck.” Dr. Hubscher thinks we need to lower or discontinue the adderall- it can cause agitation as well as overfocus. He also tells A about meditation. He takes out a meditation bowl and shows A how to listen to the sound of the bell. It’s a nice experience. A is calm and I am looking forward to finding a meditation teacher for him.Of course, we could just do it at home focusing on our breathing, without an instructor, but A needs to framework of a course or outside structure to learn meditation.

A leaves on his own – we don’t need to carry him out, but he’s grumpy and hungry. We stop for a burger- he’s annoyed that the pickles are the wrong kind, but we make it home unscathed.

I pick up H and B. I am tired of making them come second. D stays home with A and they do well.

Later in the day H and I are bicycle shopping and I get a call from B. “Mom, Daddy is wrestling A. I’m in the bathroom.” I tell B to stay on the phone with me. I talk him through finding the toilet paper and eventually how to leave the house with D’s phone and knock on the next door neighbor’s door. I’m impressed he makes it and is welcomed with open arms. After years of not telling people what goes on in our house, our lives are now an open book and it is paying off. Our friends and neighbors have offered so much support. I am glad B found a safe place.

H is afraid I am going to cut our trip short, but B is safe so we finish without rushing and then go home. H suggests she go to the neighbors and get B and then stay out with him. I go inside and A is watching tv-almost sleeping. D is upstairs- he says A was working diligently on a computer project- printing out pictures for his rock log- he is documenting each rock we have collected and measured with a photo- without warning he let out a scream and lunged for D. A knocked things over, ripped D’s necklace off, overturned furniture and also told D he wanted to kill him and kill himself.

We make a plan. D will take the other kids to my moms and have dinner. I am going to call Mobile Response. We are desperate to avoid another hospitalization and we want to give A a chance to be properly medicated AND have a proper school placement. We are back in the familar pattern of keeping A safe and waiting.

A is asleep and I make the call. The operator asks me SO MANY questions. So many stupid questions. “What kind of picture was he printing?” “A rock? Is that r-o-c-k?”  I am put on hold and when the operator comes back I am told they won’t be coming out. They say I need to take A to the hospital. I explain I am calling then to help me deescalate things so he doesn’t have to go to the hospital. “So, you are telling me that I am calling you for help in a crisis and you will not come?” After much coercing they tell me they will come, but while we are the phone I have to wake A and tell him they are coming. Not only are they coming, but they are coming with a police escort. I am shocked. i am horrified. He is not a criminal. He is a little boy in crisis. I want someone to come talk to him and give us a n objective opinion as to whether or not he needs to go to  the hospital. I tell A, but he’s not really awake. Somehow this is okay and they agree to come out. After our one hour and seven minute phone call we hang up and I fully awaken A and tell him what is going on . I explain the police are coming and it’s silly. Not to worry. They arent going to arrest him. Just help. He’s ok- a little nervous, but ok.

We wait. And Wait. They finally arrive an hour later. The police offficer comes in and spends less than a minute — he sees A is just a boy and not agitated. Then the intake workers ask us questions about A’s history, his meds, etc. They agree to make a referral for services through the state. I wonder if I am being naive thinking they will help. I feel like I am opening Pandora’s box.

One of the worker’s tells me that they really shouldn’t have come out. Once there is aggression, they aren’t supposed to get involved. I am confused and ask him to clarify who, then, is suppossed to be using “mobile crisis?”  He tells me there can’t be talk of suicide or agression and usually its for oppositional defiance. So I ask if A refuses to stick to the schedule we have set up should we call. But he tells me that is a parenting issue and we need to send A the message that we can handle discipline. I am so confused.  I really dont know who that number is for.

They leave, D comes home with the other kids. A is fine for now. We discuss the plan for tomorrow- schoolwork and a school interview. D is home again tomorrow. Thank goodness, because I am sure A will not go to the interview willingly.

Tonight I had an idea. I have heard of something called “video feedforward” used to help kids with selective mutism. They are videotaped answering questions that their mother (or the person they will speak to ) is asking. But, instead of the video showing the mother, the teacher is spliced in asking the questions. The child watches the video and sees themselves talking with their teacher and it does something to them- they can now speak with the teacher in real life.

I started thinking that if we could video A just before he rages, and the splice in him handling the situation properly, maybe it would convince him and his brain that he could do it. It would be like erasing the event and replacing it with a better memory.

So I’m worn down. I am mad. I am mad at the system. I am mad at Meridell. I feel like we knew what would happen when A came home but they wouldn’t listen. It feels like they are being smug with their attitude htat we have to “show him who’s boss.” I can’t believe this is happening to our family and I want to fight it at all costs.


March 17, 2010

I thought a lot today about what I was going to write. As things happened I thought I needed to include them in my blog. But, they were the bad things. The horrible, unimagineable things that I actually don’t want to ever think about again. Instead, I have to remember the good that happened, because mixed in with the restraining, the cursing, the threats, there was good.

A sat with me and did all his school work! It was miraculous! He even told me he liked working with me a lot. He amazed me with what a quick study he is. (I amazed myself that I still remember fractions and decimels!) We went for a nature walk and A started a log book for rocks– we collect them. He measures them “tip to tip: and “end to end” and then he figured out how to calculate the volume using a measuring cup and water and water displacement. We did this for hours- he was so focused and so into it. So cute.

He says he doesn’t like tv anymore and wants to be outside playing!

His sister wrote him a beautiful letter about siblings-most siblings don’t get along all the time and at her game there were so many who were fighting and arguing with parents about having to attend a brother or sister’s game— and she forgave him for missing her game tonite and having me miss it also.

He played with Ben outside and went bike riding with him.

He went to his doctor’s appointment.

He used “self-time-out” and went to his room to cool off.

He asked Ben to leave the room because he didn’t want to hurt him.

He pet the dog when he got upset.

He navigated a store with David without incident.

He fell asleep at 10:00 instead of 1 am.

Let the Fun Begin!

March 15, 2010

D and I leave early in the morning to catch a 6:30am flight. We have to change in Charlotte. I was hoping for nonstop–I want to be well rested and on top of my game when we pick A up. Well, the bad news is our flight was delayed- no way to get the connection. The good news is we were put on a non-stop from a different airline that got in early. We had time to get settled in the hotel, eat, etc. before we picked him up.

He looks great- down 11 pounds since he came- I think its mostly from the adderral, but we tell him that’s what being active and eating healthy can do.  We get his suitcase and all his belongings together. The nurse gives us his meds and instructions. There are enough meds to get us through until tomorrow night. We have to have his prescriptions filled when we get home. I priced his new med regime-$960/month! But, today we got a call that we were able to get a prescription rider added to our health insurance, so now it will be a minimal cost– what a relief!

A signs his safety plan promising to use his coping skills and communicate to us when he is upset. We leave. It’s pretty exciting! A is really calm and collected- I’m glad D sees what I saw on my last visit. It is pretty remarkable. We head to the hotel and repack A’s belongings, out of paper bags and into suitcases. I come across a school paper that I assume was written by his teacher, but A tells us he wrote it. I am in shock. We find a writing sample from his first few days at Meridell and compare. It is unbelievable. I tell A that he has really worked hard on his handwriting. What I don’t tell him is that I know the adderral has always made his handwriting MUCH better. I want him to feel like it’s not just medicine making these changes- I know how important that is, but I’m not sure if I really believe it.

The afternoon goes along without a hitch. D is great. He seems to know exactly what to say to A. We all plan the next few days and talk   important it will be to keep a structured day.

We go out to eat. A doesn’t eat much, but attempts to eat some veggies and steak. This is a far cry from the boy who used to eat until he threw up. I know we have to keep a close eye though to make sure he is eating something. D and I think maybe we need adderral too!

A’s concentration is remarkable. He sits for a long time with a paper airplane book and folds his way through a few models. He also plays computer games on the laptop for a long time–not something he usually has the patience for.

It’s medicine time and we let him know the computer needs to be turned off in 15 minutes. He takes the meds but when 15 minutes is up he begs for more time. We let him finish the level, but then lights out. Before the level is complete, he starts banging the computer. My first instinct is to yell at him to stop and take the computer away. I have to remind myself our goal is to set him up for success. Consequences may stop the computer banging, but it will escalate his opposition. I tell myself I can do this and I gently put my hand on his computer. “Let’s get through this A. It’s bedtime, we need to get up early.” He starts to mini-tantrum. I remind him of his coping skills, but he says he doesn’t care. I stay calm on the outside, but I am panicking on the inside.

He manages to put the computer away and make his way to the bed.

“Well, this isn’t going to work, ” he tells me.

“What isn’t?”

“I guarantee you I will be back at Meridell in 4 weeks.” I almost stop breathing. Earlier today he was so rational and together, he told us he knows every few years he will need to have a “tune up” of his meds in a hospital and that was okay.

I tell A that he is going to do great. No one is perfect and he handled the problem much better than he used to. “Daddy and I know you can do this. You will use your coping skills and we will help you.”

He looks a mix between angry and sad. “I never said I was going to use my coping skills. I need to live somewhere where a doctor will watch me and get my medication right. I can’t go home- by tomorrow night, just you wait, you will have to put  me in a therapeutic hold because I am going to hurt Hannah and Ben.” He even threatens to burn the house down. I wonder if this is a new “trick” he picked up on while he was away.

I remember that between hospitalizations a few months ago he had a lot of anxiety about not being able to function outside of a hospital. I tell him that this time is different we have all learned new skills and the doctors have gotten the medicine right.

We talk in circles for what seems like a really long time. I do my best to convince him that he is going to do okay and he tells me why I am wrong. I am at a loss. D comes over just in time and completely distracts A with pictures to look at. He handles him so expertly, keeping him distracted by the pictures but also letting him know that we are here for him and that worrying about going home is normal and he’ll do great.

We all get into bed and D falls asleep quickly. A, on the other hand, is the least bit tired.–another adderral side effect. He is up to 5mgs of melatonin (after years of .5 mgs which would knock him out quickly.) I also gave him some benadryl- partly because his ears were bright red and partly because he told me he has been taking it at night to help him go to sleep. Minutes pass, and so do hours. He is still awake.

I start wondering if I can return him. I feel terrible feeling this way, but he can’t sleep and he so quickly reverted back to old behavior– we barely had a honeymoon!

I pretend to have to use the bathroom in our hotel room, turn on the sink, and I call Meridell, not to return him, but to get some advice. Mr. Jeff tells me that yes, A has had a hard time falling asleep lately. Benadryl seems to do the trick but also not to pressure him to sleep. “He’s not the kind of kid that does well with pressure. I found letting him do quiet things until he was ready to lay down worked.” He also tells me that A sounds nervous about returning home and to keep telling him what we have been.

Somehow when I am talking about the issues we have, it seems so obvious what we need to do, but when they happen, I can’t seem to find the right way to handle it.

A is still awake. We need to leave for the airport at 5am. I hate that our debut back into family life begins with a bad night’s sleep. I was hoping for angels singing in the mountains while A reunites with his sibs and relatives at home and we all live happily ever after. Oh well.

What A Day

March 12, 2010

By 9 am I am already exhausted. And I am only parenting at 2/3 capacity. Enroute to school today, H asks if I remember what she told me yesterday. I struggle to remember 5 minutes ago, but I do recall a conversation with her about how she cries in school for no reason and doesn’t know what to do.

“Yes, I do remember.”

“Well, I feel like that today.”

I tell H to think about a safe place where she is happy and feeling good. She tells me the two of us are sitting together.  I have her describe how it feels and looks and I tell her to think about this place when she feels like she is going to cry in school. Except it backfires and she starts crying in the car. “But it makes me miss you!” Somehow she pulls herself together before it’s time to get out of the car and we say a cheerful goodbye. It doesn’t miss my attention that she looks great today — albeit in shorts in 45 degree weather. She has such style- her backwards pink baseball hat, her pink football sweatshirt. She exudes confidence- if I only I could convince her of that.

As we pull away from H’s school Ben pipes up. “I’m not going to school today.” I explain, as I have done for the last few days, that school is not optional. You can choose how you go there- nicely or getting dragged in, but all children go to school. “I’m not going because I don’t have my cleats on.” We looked for the cleats all morning. He was finally given the choice of barefoot or sneakers. He chose barefoot and I hid the sneakers in his bag. He whines and cries the whole drive about not going to school. I don’t even want to engage him in why. I start thinking about when this started– it started a few weeks ago. Sure, he has so many reasons to have problems with separating from me right now, but this seems to be more severe than that. By the time we get to school he is having an all out tantrum.

It hits me. It’s March. A’s school refusal always started in March. We never knew exactly why, but once the bipolar was diagnosed, we started reading about bp kids with a seasonal component. There is even a name for it, “March Madness.” Why is B having March Madness? Have I missed something? I run through the early warning signs we missed with A- social problems, no pretend play, never played with toys. But B doesn’t have these issues-he does have speech articulation issues, but they always seemed to be in isolation. Maybe the class is too overstimulating? 

I’ve learned a lot, and I know the teacher will tell me that B is just fine right after I leave, and that may be so, or she may be missing some subtle issues. I speak with the director of his school and she agrees we should have B evaluated by the county child study team. Phew.  I feel relieved that at least we got the ball rolling and this time I will have a better understanding of the results so I can push for answers if need be.  A’s test results have been steady since the first time he was evaluated at 3- but no one ever told me they indicated problems, until the last few years.

As a matter of fact, Dr. Kroll at Meridell added a diagnosis- PDD-NOS- Pervasive Developmental Disorder, Not Otherwise Specified. My understanding of this is that A meets some criteria of the Autism Spectrum, but not enough to call it Aspergers or Autism or PDD. Oddly this new diagnosis has taken some of the wind out of my sails. True, A had previously been diagnosed with Aspergers, but that was retracted when our neuropsychologist said he has a Non Verbal Learning Disorder. I spent many months in a fog and wondering how I could have a child with autism and never really have noticed it. Now here we go again, only this time it really makes sense and I see it loud and clear. With A’s other issues well medicated, the weekend trip with H revealed so many of A’s social deficits and so much of his rigid thinking and narrow interests.

I tried to make sense of it all with Dr. Kroll on the phone and her answer was not to worry about labels. Which I completely agree with, but I still want to understand the alphabet soup — BP, ADHD, ODD, NVLD, and now PDDNOS.

I don’t have too much time to ponder it though because A’s therapist has called to tell us he is coming home! I am half excited. Half scared to death. I try to explain this to the therapist, Dr. Kroll and unit nurse over the phone during a “family” session (A isn’t included in this one and D is out of cell range.) I have so many questions about how we will handle things should he get upset or oppositional. They tell me I sound like I have a lot of anxiety around his return. I almost snicker out loud.  Of course I have anxiety!

We have been  more than thrilled at the top notch level of care A and our family has received from Meridell thus far. Sadly I am feeling like their discharge planning is lacking the same expertise. I don’t feel well equipped to parent A. I don’t know what the “tools” are in his “tool box” they keep referring to. Anytime I ask about it they tell me that if I don’t feel like he will succeed then he won’t. It is all up to me and my attitude. I ask them to explain how this time it will be different. And their answers are good and valid- he is properly medicated and he has been away for a longer period of time. But, we really don’t have anything set up for him at home yet. We end the call with me singing the praise of how well A will do when he comes home- after all, if I think it will work, then it will, right?

I call D and tell him A is scheduled to be discharged early next week. “They are setting him up to fail,” he tells me so matter of factly. I don’t handle it well. I scream at him to stop saying that. And then I hang up. Poor D.  We speak a little later and I explain what was told to me –if we think he will fail then he will. But I know this isn’t a battle of wits and expectations. And D knows it too. But I want to believe them. They are smart. They know what they are doing.

D offers to help me get A’s room ready for his return. This is the concrete help I really need. We need to declutter –As room has become a bit of a dumping ground for all- things- not- needed- right- now -that- we -will- deal -with- before- he- comes- home.  And that’s now. We also want to make the room less visually stimulating. I am so glad D helps me. It is so overwhelming being A’s mother. Apparently even when he isn’t home.

Plans are made. Tickets bought and “A Home” is written on our calendar for next Tuesday, March 16th- D’s birthday.

D and I are still very skeptical that we can handle this. We scramble to find a psychiatrist and a therapist. D comes home early to accompany me to an appointment with a new psychiatrist. We are both pleasantly surprised that we like him. He agrees to follow the medication protocol that Meridell has set up and agrees to keep in phone contact with Dr. Kroll since the new doc hasn’t used Keppra or amantadine before for kids like A. He is impressed that Meridell has looked beyond the traditional meds. I like that. D likes that. Dr Hubscher, the new doc, endears me to him further when he says that we have to have a real solid plan for when A comes home and having A sit home waiting to be placed in a special need school can be dangerous. He confirms that D and I are not nuts for thinking that A will decompensate without school.

Meridell’s plan is for me to keep A on a strict school-like routine. “Math for 45 minutes with a 5 minute bathroom break, next is reading for 30 minutes, another break and it’s time for social studies. You keep this going until it’s time to pick up the other children.” I tried to explain that this sounded like a plan for disaster for a boy with attention issues, a history of opposition, etc. But I was told that if I think it will fail then it will.

Dr. Hubscher didn’t think it was mind over matter. “He needs to get into school as soon as possible. ” He offers to help us in anyway he can. I like him. I really really like him.

I am still puzzled by Meridell’s lack of understanding about this. I think some of it has to do with New Jersey being very different than Texas in terms of how school placement works, but more than that, they don’t seem to be giving us enough direction with his homecoming.

Which means it is up to us. We have a meeting scheduled with a parenting coach from The Nurtured Heart Approach — a program/philosophy that I stumbled upon a few years ago and loved. She will help us set up a behavioral plan to implement. I am very much looking forward to our meeting.

Our health insurance does not allow us to go out of network for services. And very few therapists in our area take insurance. I am worried about the quality of therapists who do, but am determined not to have to pay $200-$300 an hour for therapy- especially when, at least initially, A will need to see someone once or twice a week, in addition to family therapy “to heal relationships” (As per Meridell.)

So, I search the insurance website for providers. I click and scroll and depending on what I input I come up with thousands of providers or none. I make it my project today to find someone. Someone who I only pay $20/hour.

I make my first call- “Hi you’ve reached Gary and Sue…” Ugh, that’s not the right number. I call the insurance company who gives me the correct contact info. “You’ve reached Dr. Anthony Smith. Please leave a message. Oh, and, peace be with you.” He lost me at the whole peace thing.

Next call. Voice mail. I start leaving a message when the therapist beeps in “I think I just missed a call from this number?” I go into my lengthy description about A’s history and upcoming homecoming. He finally interrupts and says,”I’m sorry, I am in the middle of a session, can I call you back?” CALL ME BACK?!?!? He called me!! In the middle of someone else’s session!

This is proving to be as difficult as I had though it would be. But finally, after numerous phone calls to therapists who don’t see children, or who feel seeing a child individually and then with the family is a conflict of interest, we hit gold. A psychologist who not only takes our insurance, feels he can help us with all the issues we will be lugging to him, but h had a previous career in special services in New Jersey School Districts. I am so happy I start to shake. 11:15 Saturday. We’ll be there- with $20 in hand.