Archive for April, 2010

Baby Steps, Baby

April 28, 2010

I’m sorry I didn’t write yesterday to report how wonderful things had been going. A was a superstar. He was compliant, agreeable, social, happy, participatory. He woke up at 5:30 in the morning yesterday but told me he knew he couldn’t watch tv until 6 am- so he would lay with me until then and at 6 would quietly go downstairs and watch tv until the rest of the family woke up at 7. When I went downstairs at 7, A had gotten dressed and walked the dog! The only glitch we faced yesterday was his homework- it was so hard and hit upon so many of his deficits- way too many things on a page and too many steps, but he was okay with me writing a note to his teacher that he tried his hardest but couldn’t do it.

I hated to think it, but I knew it couldn’t last. This morning the “other” A woke up. Cranky, irritable, maybe manic? He was spraying his lizard and accidently sprayed the heat lamp- which caused a little explosion. iIstead of running from it, A loudly calls, “code red code red.” I come in to see him standing in his room with a fire extinguisher. It took a few minutes to understand what had happened. I explained that A has to be more careful, next time leave and get me- don’t get the fire extinguisher, etc. While I’m cleaning up his room, I hear screaming from upstairs.

A has gone into B’s room and awakened him-“B! THERE’S A FIRE GET OUT OF BED!!!!” Poor B. I calm him down and I get A to the kitchen for breakfast. But he wants to eat downstairs. We’ve started working with an in home therapist and amongst our rules, “no eating outside of kitchen,” is listed and posted. A puts my new skills to the test and refuses to bring the food upstairs.I explain to him that he needs to “reset.” That’s Nurtured Heart Approach speak for “stop what you are doing and follow the rules.” I try to focus on what A is doing right- as per the new approach. Hmm…spilling cereal all over the floor, being nasty-not much to comment on, so I leave the room. To my surprise A comes upstairs with his bowl. He is looking for a fight from his siblings- I ignore that and thank him for bringing the bowl up. A goes downstairs, puts a blanket over his head and declares he isn’t going to school today.

My heart sinks. I finally realize what is so frustrating with the therapies, the classes, the videos, the websites, etc that we have been attending, researching and studying. They all give us advice on how to parent during the good times. No one has said what to do during the crisis. How do I get him school? Nechama, our in home therapist, has helped bring me back to what I feel is my natural state, of compassion. Of remembering that my goal is help A succeed. I rub his back and talk to him about going to school. He isn’t budging, but I’m not yelling or threatening. I manage to stay calm, and there is no violence, so I give myself points for that one.

I call “the team.” A’s school therapist and Dr. Hamway. No one answers either call. I do eventually hear from the school therapist while I am driving B and H to school (I left A home. It’s a quick 10 minutes at most and I knew I couldn’t get him out of the house anyway.) We agree that I should drive A in to speak with him and then take A home- I am glad that the therapist sees this as a successful step, rather than A manipulating.

A is able to articulate that his classwork is just as difficult as his homework. He says he loved the school at Meridell and wishes his new school was the same. I’m glad I listened to him today. I’m glad I slowed my day down and could hear him. I just don’t know if it matters- I don’t know if the school can or will change the material for him.

We take the 40 minute trek to A’s school, meet with his therapist- which goes fine. We agree that on days A won’t go to school it is a “bread and water day.” No tv, etc. but I know that it doesn’t really matter. On the other hand, it may not be boring enough to make A choose school over home, but at least it isn’t reinforcing A staying home. The therapist tells A that when there are problems A needs to come to school so he can deal with them. He also talks about A’s behavior chart at school (A is worried about getting a zero for homework.) It’s sort of a mixed message, but the therapist tells A that getting a zero doesn’t mean the world is coming to an end, people won’t dislike him, etc. I do like this approach over manhandling him and dragging him in, but I also know that every day I can’t get A to go to school is another day that makes it harder and harder to go.

We have an allergist appointment and the doctor prescribes chromalin- he says it is the only medication he knows of that has NO side effects- A is very happy.

We also see Dr. Hubsher who is pleased with A’s progress, even though today wasn’t so great. Dr. Hubsher tells A that A is getting better- I like that message. I just wonder how long I can fumble through this with no direction.

I really like the  Nurtured Heart Approach, I’m just not sure it is this approach we need. Firstly, I’m not sure adhering to one method is the right way to go. I would rather take what works and combine it with other things that have worked. In my head today I have designed a program that I think, with the right support and manpower, can really make a difference.

The basics are what we already know- not too many rules. Keep them posted, although, A knows right from wrong, but we need to be able to show him the rules to get him “unstuck” when he perseverates or tries endlessly to reason with us. “A, look, it’s a rule.” Short and simple.

We need a routine and someone to run A through the routine 1,00 times. Morning, afterschool, bedtime and weekend.

We have to decide what our goal is. Today my goal was to get A to go to school with me. It meant I had to put his socks and shoes on. It meant not asking him to clean up before we left. Those were all obstacles and diversions. I don’t think it will have to be like this forever, but it’s a tactic for crisis.

A needs rewards for following the rules. Of course he should be intrinsically motivated to have good behavior, and he probably is, but he is a concrete thinker (and a boy,) so getting something he really wants AND getting a warm y feeling on the inside is going to reinforce positive behaviors.

Now I need a staff. I need someone here morning noon and night to help me implement. Someone in addition to me and D. Even if money weren’t an object, finding qualified people is very difficult.

I tell A that in the morning he will wake up, get dressed, eat breakfast and go to school. He agrees. I brace myself.


Redefining Progress

April 26, 2010

A lot of my “free time” (ha!) is spent being upset about A’s lack of progress. Then it dawned on me that I need to change my definition of progress. There actually is quite a bit-

*A has been home and hospital free for over a month!

*A is going to school on a (somewhat) regular basis!

*A does have SOME ability to handle “no”- although it is still very hard – but instead of becoming a psychotic aggressive lunatic, he will perseverate, “why not,” “did you change your mind yet,” “Why not,” “Please Mom,” etc. It can go on for a very long time, but it doesn’t always end in physical assault (I am thankful for little things these days!)

*A has had a few playdates! He had a very successful one yesterday- at one point he retreated to his room and shut hte door, but this was after a long time of socializing.

*A is no longer anxious (from what I can tell)

*A is playing with lego — and it seems he has developed some imaginitive play- instead of just a tower that he measures and records, A is building a hollow tower- a “jail” and putting “prisoners” in them (small legos.)

*physical restraints are minimal- maybe once a day if that.

So, there is progress. Baby steps.

I am having a harder time dealing with him lately. I am tired. I am tired of being in crisis all the time. There has to be a light at the end of this tunnel.

We saw a new doctor last week- I was actually done seeing docs, but the appointment sort of fell into our lap because they had an immediate cancelation. He is a neuro-developmental pediatrician. He was great with A. He said that the neurological exam was pretty good- which is great- but there were somethings he picked up on-like A can’t move one hand without moving the other-he can’t draw a picture (well, he can, but it looks likea 3 year old did it,) he can’t close his eyes and know what letter is being drawn on his hand. He wants A to have an eval of his sensory motor integration and visual focusing skills — both of which we know are poor– but this doc offered some new ideas– the first being more OT to address some of A’s issues in a non pharmalogical way. He also ordered bloodwork to rule out any chromosomal or genetic disorders. There will be more brain scans as well. He is confident with the new information he can help medicate A and also know why A is so hard to medicate.

D always tells me that there is always something else to try. I get frustrated when he tells me that. But, I know he is right. And this doc may be just what the doctor ordered!

And the beat goes on…

April 21, 2010

A goes to school Monday, but comes home very irritable. He rips up his homework. He is so unstable again. I don’t know what to do or who to turn to. A goes to school Tuesday. He has a little league game– I have to go to Hannah’s softball practice, but D goes to the game and is amazed at how well A does socially I thought the same when I saw him at practice a week ago. Tuesdays are a very busy day for A, so his opposition is somewhat tolerable since he isn’t home much of the afternoon and evening.

A wakes up this morning very congested.I give him benadryl.

“I’m not going to school like this.” i explain that even with allergies people go to work and school and he needs to also. A is blowing his nose non stop. Blow, throw tissue, reach for new tissue, blow again. It’s so annoying to watch. It’s so annoying to hear. When he runs out of tissues he yells for more and if I don’t come as quickly as he wants (which is everytime since I am not going to jump through his hoops,) he throws things and curses.

His minivan arrives and A says he won’t go. I try all the usual tricks and finally tell him my only option is to call the police– which my new therapist told me might have to be a solution. I call, they come and speak with him and then tell me they can’t make him go. The leave. I cry. H has already left for school with our neighbor but B is here and he rubs my back and tells me it will all be okay. I do my best to pull it together for him. I feel so badly that this is his life.

I call A’s clinician at his new school. He tells me to bring A to the doctor, make sure there isn’t anything medically wrong and have doctor tell A that even with allergies he has to go to school. We also talk about possible reasons A is refusing to go to school- I am pretty sure his mood is unstable from the steroids and I also think his teacher isn’t understanding A’s learning issues– she actually told me she hasn’t read through his file yet. The clinician wants Abe to come in so he can see the process of resolving any problems that may be happening at school. I also tell him that A came home upset about an incident with a teacher’s assistant who A says “ruined my life- she made me get a math answer wrong.” A says he was very upset at school about it, but didn’t tell anyone until he got home. This is definitely a pattern I want them to work with him on.

We go to our doctor who gives A nose spray and he promises he will take it in the morning and go to school. We get int he car and A announces he won’t take the spray and he won’t go to school. It’s already 1:30 so I can’t take him to school today. I feel like A won. Not even the police can get him to go. D tells me A just needs a little extra TLC today. I don’t know why- probably a mixture of exhaustion and depression, but I really don’t care that A needs TLC- he threw things at me this morning, he cursed at me– maybe D should come home and give him TLC.

We have an appointment with Dr. Hamway, the psychologist. Whenever I go there I am glad we did and I realize we are probably underutilizing him by not calling during crisis. Dr. Hamway gives us practical solutions- vicks vapor rub on A’s feet with socks at bedtime, special decongestant vapor discs in the shower and be easy on A today- there is an adjustment period with a new school and he does have a lot of congestion. He also wants me to get teacher on board with A’s non verbal learning disability.

H has a friend over after school- A actually plays hide and seek with them. I’m too burnt to appreciate the enormity of this. I take B to judo- he has been begging to go- we have role played and rehearsed how he will do the class while I watch. I fork over $50 for a uniform (no uniform- no class) and $20 for his first class. B sits on my lap and cries. “I want to do it but I’m scared. Please make me not scared!” It was a long hour.

Back at home to take A to Dr. Hubsher- we were only able to get an 8pm appointment- A falls asleep in the waiting room while I speak with the doctor. But it is a great appointment- Dr. Hubscher thinks out loud about what could be happening and comes to the conclusion that A’s atypical reactions to meds is due to what Meridell found on the QEEG- the brain damage. In that case, he surmised, the steroids aggravated that area creating irritability and aggression so A needs more anti-seizure meds. We are going to increase the keppra. I am so glad there is something to do. If he told me to feed A elmer’s glue I would have- I just need something to go with.

This has really taken a toll on me. My least favorite question, “What are you doing for you?” Ha! What can I do? In between police visits, psychiatrist appointments and restraints I am suppossed to get my nails done?

Poor Kid

April 17, 2010

Well, we were right. A cannot take steroids and possibly other allergy meds. By mid-week he was completely unstable. Wednesday night he didn’t fall asleep until 2am because of all the breathing treatments-they really stimulate him. He was up at 5:30 screaming and punching walls. I managed to settle him back down and he fell asleep. I originally thought I would keep him home from school so he could rest-he had a 1 o’clock pulmonologist appointment anyway. But, what I saw what he was like at 5:30 I decided there was no way I could stay home with him.
I knew he would hold it together in school and that $ay be what we needed to “snap” him out of it.
Of course my attempts at waking him and getting him dressed and fed were met with hostility and aggression. He begged me not to send him to school because he said he didn’t know of he could hold it together and he didn’t want anyone else to see him like this. My heary broke for him, but I still needed him to go. Not sure how I did it, but he went. I called school and gave them a heads up. I also told them that he would probably be a perfect angel for them –and I was right. I picked him up for the doctor appointment and was told had I not called they never would have known something was wrong.
Off to the doctor–its an hour ride but A is in good spirits. We arrive early and do paperwork. A is getting restless. The wait is getting excruciating. When I inquire about when we will be seen, I’m told our appointment was actually for 1:30 not 1–more waiting. A is growing impatient. He is threatening to leave.
Finally we are brought to the exam room. More waiting. Eventuallu the doctor comes in–we give him a rundown of A’s allergy/asthma history plus med history and psychiatric history. As I’m talking I start thinking the doc is in over his head.
The doctor wants to do a breathing test. After the test he will give A a breathing treatment. The doc heads to his next patient while we await the test. And wait. And wait. A is growing agitated. He tells me he is afraid to take the breathing treatment because he doesn’t want to get manic from it like he has been. The doctor returns-surprised we haven’t had the test yet. I tell the dr. A and I are both concerned about the breathing test. He agrees not to do the breathing treatment but tells us about using an inhaled steroid instead. He explains how so little of the steroid is actually absorbed by the body. A asks to read the packakge insert and the doctor grows impatient and tells him no. A cries and says he is scared to take medicine because he doesn’t want to hurt anyone and thinks he will. The doctor goes into a song and dance about if you think it will happen then it will. I need to deescalate A who is squeezing my hand and quickly losing it. I tell the doctor that I will get A to take the meds and we will be on our way.
But the doctor won’t let us leave. “He has made some serious threats-i can’t allow you to leave without talking to your paychiatrist first.” He calls and is told the psychiatrist will call back in 90 minutes. The pulmonologist tells me we have to wait, or go to the ER for treatment.
Its after 4. We’ve been in the office for almost 4 hours and A is hungry. I tell the doctor we are leaving and will await a call from our psychiatrist. I wonder if he will call the police or something.
A is crying. He feels as if he has no control in the situation. Dr. Hubsher, the psychiatrist, calls us and says to get A food and then go back for the inhaled steroid–its safe. A agrees to the plan. Just before we arrive at the pulmonologist’s office, Dr H’s office calls to say the pulmonoogist closes at 5 (its 4:55.)
A is scared he is going to die–the doc was trying to convince him to take the meds by telling him how he will turn blue if he doesn’t. Now A doesn’t know what to do.
I tell him not to worry-I’ll make the decision for him. We are going to the ER.
We are seen pretty quickly. There is discussion between the ER doc, Dr. H, our pediatrician and pulmonologist. I am pushing for them to admit A and give him the meds in the safety of the hospital. No one wants to take that responsibilty, but our pediatrician does finally come around and tell us that A will be admitted and given all the meds he needs to get his breathing stabilized -she says it will only be for a few days. I am so releived. D meets us and I go home for the night. A is started on a steroid drip and breathing treatments. He doesn’t get aggressive, but he definately perks up.
D calls in the morning to say they are discharging A. I quickly call our pediatrician who tells me A’s breathing is better and he tolerated the meds fine. I explain that it builds up in him and this doesn’t sound like what she told me yesterday in the ER.
“To be honest with you, and please take this in the spirit it was intended, A didn’t need the meds, he didn’t need to be admitted. We did it to boost your confidence and show you he could take the medication. And, to be honest, if he tolerated the iv steroid then there is no way he had a reaction to the pills earlier this week.You just need to have faith.”
I’m speechless. I’m horrified. I’m mad and I’m scared. Im unable to express to her the danger she has now put A in and the danger the rest of us will now be in. The doctor is pregnant and I resist the urge to tell her that I hope her baby never has problems like this.
A’s mood is good-as it always is in the hospital. He knows the plan and we all head home.
We can’t keep A outside and busy because it can make his breathing worse. So we watch a lot of tv. He is ok, but I can sense he is growing more and more agitated as every hour passes.
H is in a school show and B and I go to watch. Aunt K is in from out of town so she comes too. A and D stay home.
There is a tribute to the graduating class–what would have been A’s class. I wanted him to be in a special class for so long, but seeing what could have been-the other 4th graders in their matching school shirts swaying to sentimental songs as they watch a photo montage of their years at school–it feels like a slap in the face.
A is already asleep when we get home. D is working overtime in the early morning and Aunt K will come over to lend a hand on the morning.
A and B awaken early –they get into my bed to watch an early morning movie-no problems at all. I give A his meds plus the inhaledb steroid. A is HUNGRY and needs to eat NOW. He wants leftover pizza –so does B. I heat it up but A is livid that B is going to have some too. It becomes, literally, q knock down drawn out fight between me and A. He is raging. He’s got “the look”-the farway eyes-he’s repeating the same things over and over…I manage to alert D who calls my mom’s house and he starts making arrangements to getbome.
Aunt K comes-by now A is calmer-burt he is definatley agitated and looking for a fight.
I am in survival mode-make sure everyone is fed and safe-nothing else really matters on these kinds of days.
A has no frustration tolerance today. A problem on the computer sends him into a fury and I restrain him. He manages to get a good bite out of meiaiand he’s not his usual remorseful self.
I’m exhausted. This is too much. This is so sad. Why didn’t the doctors listen to us? It feels like our circle of trusted professinals is gettong smaller and smaller.
D comes home and he restrains A while I take the other kids out. I don’t want to deal with A. I leave the house sans guilt and with no desire to go back home.
At around 7:30 A’s mood has noticeably taken a turn for the better (It hasn’t gone unnoticed that this is 12 hours from the steroid dose) He’s back to sweet and cheery-not demanding and irritable and violent.

When everyone is asleep D and I talk. I cry. I tell him I can’t keep doing this. I am depleted. He tells me this too shall pass.

His simple and practical attitude infuriates me and soothes me all at once. I don’t know how else to communicate to him just how unable I am to go on. But, going on is just what we have to do-there are no other options-no babysitters, no sending him back where he came from. We are stuck with this. He is too. What a shitty way to live.

S C H O O L!

April 13, 2010

A loved his first day of school! He didn’t give much detail, except it was “great!” He did his homework with minimal issue. I hope this lasts.

Today was his second day of school and it is so nice to wake him up and get him out! I think there is a whole different feel to the household – A has purpose now.

I gave him a schedul eof the day to take to school this morning so he knew what to expect when he got home- Hebrew tutor and homework.

When he got home he refused to work with tutor, but eventually came around. Next he refused to do homework. I don’t really know how the school wants to handle it, but I didn’ t want to get into a battle with him. I find myself initially thinking he will have to facve the consequences and then think I need to help him be successful. I leave his homework folder out and occasionally try to encourage him. “A, why don’t you do one sentence and then do the rest later.” I eventually give up. To my amazement, he does it on his own while i make dinner. He then tells me he will have to give himself a “1” for homework on his behavior chart at school. “I refused homework- guess I get a one tomorrow.” I giggle to myself. It seems like he is in the right school now.

I feel like we have finished a very long chapter and am hopeful the new chapter is fun and easy. I tell D that we have come so far- we waited for 2+ years to get A into a special school and we finally did it! D agrees it is exciting but says he doesn’t want to let his guard down- we still have a long road in front of us. I understand, but I want to have a chance to celebrate our many accomplishments. If we always have to be cautious about being happy then I feel like we will never really be happy.

I took a lot of deep breaths today. We made it. I made it. I need a few days of rest and then need to et my life back in order. I need to do things for myself again. I need to organize the house, my business, etc. I am starting to see that I need to process what has happened to our family. I think if I don’t I might convince myself it didn’t happen.

No Rest For the Weary

April 11, 2010

So, if there were any doubt in my mind that A is bipolar, I am completely convinced now. This morning, after having a puff of his inhaler, he started manically flushing things down the toilet! D tried to stop him, but it mad A more agitated.

I was actually on my way to the car to drive H to Hebrew School while this happened. I had just told her that B would stay with my mom and A with D and she and I could have the afternoon together after Hebrew. I forgot my phone so I ran in to get it and then I heard the chaos.

When I caught up with A he threw a hairbrush at the mirror in my bathroom- missed, but hit the flourescent lightbulbs and shattered them- ran from there pushing and throwing everything in his reach. He made it to the other bathroom and punched the window- I got so scared. He didn’t break the glass but it really came close. I tried to calm him. I play a little game with myself now, so I can stay calm. I pretend to be Miss Christy from Meridell- this keeps me from getting angry or upset. It didn’t help — he punched the window again- not sure if we have bullet proof glass or something, but it still didn’t break. A started screaming that he couldn’t control himself and he had to break glass and throw things. D was outside and I was scared.

I ended up calling 911. I don’t know if that was the right thing to do. I probably could have restrained him and eventually calmed him down. A and I waited on the couch and A screamed and cried. An officer came and A calmed down very quickly. EMTs came and took his vitals, but we said we didn’t want him to go to the hospital.

A was agitated for the rest of the day. But, manageable. He slept. Tomorrow he starts his new school. I can’t wait.

I feel so badly for him. I feel terrible for H. I feel the strain that this puts on our marriage. B is so cranky. This just sucks.

Moving Right Along

April 10, 2010

The fishing trip was a success –although the boys didn’t catch many fish. But, D and A managed to stay there until last Sunday, which gave us all a nice break. D and I should have prepared a better reunion because A got pretty aggressive when he came home, but the next day he was fine again. I took B and H to school- but when I arrived to B’s school there was no one else there! H was not too happy being the only one who had school that day. Turns out B’s school was closed for Passover until Wednesday.

It’s allergy season and all three kids are really suffering. H has bronchitus, B can barely open his eyes and A is sneezing and coughing. I don’t dare give A any allergy meds except benadryl. I know from years past that his bad behavior can get worse from zyrtec, claritin, etc. I give H and B daily doses of claritin.

B tells me he wants to get hit by a truck so he doesn’t have to go to school anymore. H is an emotional wreck and can’t put two sentences together without breaking down in tears. We stop the claritin (and H’s round of steroids for her bronchitus,) and they are back to regular.

A has a playdate with another boy with similar issues and it is a great success. I overhear A speaking with someone, “My friend said…” Ha! I don’t know when the last time I have heard A refer to someone as his friend. It feels great! We make plans to get he boys together again soon.

A is doing really well. He has his moments, but he can say, “Mom, get B away,” or “I’m really frustrated…” It is pretty miraculous. He is still struggling with distraction and inattentiveness/hyperactivity and it gets really annoying, but I thank my lucky stars that he isn’t psychotic or suicidal or homicidal.

We get word that A will start High Point Elementary School in Morganville on Monday, April 12th. The town is providing transportation via minivan and driver– he is the only one from our district attending that school, so it will just be him in the van. I think I like that. D and A take a trip to the school to deliver A’s meds and for an extra chance to see the classroom, kids, etc. A is really excited!

I set my mind on just getting through the week and weekend and then structure and stability from school will really help A. And having A in school will really help me.  We have a fishing playdate with another boy and mom and it’s a success as well.

Maybe too much time outdoors during allergy season- A has an asthma attack while he and D are out and they head to the ER. A is given breathing treatments and they have to give him steroids. I am not happy. We finally have a week or two of stability and it could all get shot to hell now. A is released from the hospital and comes home late. He is wound up, but does eventually fall asleep and sleeps through the night.

A gets a breathing treatment in the morning and we head to a doctor’s appointment. We are hoping the doc says he sounds good and we don’t need to continue the steroids or treatments. The morning is  a disaster- A is really aggressive and oppositional. He is hurting B. He is refusing to go to the doctor. He tells me B wants to kill him. Here we go again.

I do manage to get A to the doctor- B has to sit in the front with me because A keeps pulling his hair and punching him. This incites A even more because it is against the law. But I drive on. Story of our lives.

Doc says we must continue both meds. We consider we may have to hospitalize A to keep him and the rest of the family safe during his asthma treatments. While it is a possibility, our immediate plan (as usual during these times, ) are to keep the kids separate and make it to Monday. Problem this time is that A can’t go out because of allergies, so we set to keep him indoors and entertained for the weekend.

I draw on what I have learned from these past months. My mind wants to go to the “what ifs…” What if the asthma meds destabilize him for good and we have to start all over? I’m panicked, but I have to stay focused. We have to get through a few more days and there is a good chance once we discontinue the steroids and breathing treatments A will go back to the good place he has been in.