Chronic Crisis

It seems like we get two or three good days and then are hit with bad. I came to the conclusion recently that there is no magic. No magic pill. No magic doctor. No magic school. We have a good day and recover for the horrors of the day before and just when we settle in, we get hit with a bad day again.

A’s asthma seems to have come from out of the blue. D and I think it may be medication related- and sure enough a side effect of the amantadine is asthma. I contact Dr. J who says it is worth a shot to take A off the amantadine for 72 hours to see if the cough goes away. We do and it does- but then H gets it, so chances are it was a virus.

But something else happened when we took A off the amantadine– he smiled! We didn’t realize that A hasn’t smiled in such a long time until we saw it! He was so happy, compliant and not irritable at all. Maybe a little too happy– he was incredibly hyperactive and impulsive, like he is on speed- he told me he feels like he can’t slow down. His teacher tells me he seems more “vocal and is disinhibited” in class now. He needs a lot of attention and redirection to stay on task. But he goes to school and he whistles a happy tune along the way.

D and I debate not putting him back on the amantadine since there is such a drastic change in his mood. But, he is all over the place- can’t sit still for tv, to do legos, even play with his pets. How quickly I forgot how he used to be.

Our happy camper woke up on the wrong side of the bed this morning though. Refused to go to school. Grouchy. Irritable. Oppositional. Hitting and kicking. I stayed home with him all day, but didn’t give him much of my attention. He knew not to turn on the tv.

Although he was in a nasty mood all day, he didn’t rage- he seemed on the verge, but never crossed the line. I can’t help but think the amantadine made him rage.

D and I agree we will try the amantadine again and see what we get.  Our house looks like a hurricane went through it– all of A’s manic projects he started but never finished over the last few days. I actually can’t wait to start the meds again!

When A didn’t go to school today I resigned myself to knowing that no one is going to help me. I left a message with his school therapist that he didn’t get on the bus. He did call back, but just to confirm he got the message. I pretty much have given up. If A can’t get to school and no one is able to help me get him there, then A will go to boarding school. We’ve talked a little about it to him- making it sound great a privilege only the elite get. He doesn’t buy it. But today I tell him that we are excited about all his summer plans and that after that he may be headed away- and that D and I will make that decision. I tell him all kids feel the way he does about going but that after a few weeks they don’t even want to come home.

I feel sad about that. One of the schools I’ve looked into (www.hunterschool.org) boards the kids in typical looking homes with “house parents” and each child has his or her (mostly his) own bedroom. I think I will be so sad to know that he comes home to his “house mother” instead of me. Why can she make it work and I can’t?

My goal has been to get him properly medicated, in the right school and have the right home supports. But we can’t seem to get all three going at the same time. It seems like therapeutic boarding school is the easy way out. But I also know that it may be the best thing for him and for the rest of us.

I’m feeling like constant crisis is our normal and I hate it. But I don’t know what to do.

This Kid Never Gets A Break!

D and I sat down with A and went over the rules of our family- No hurting anyone, no speaking disrespectfully, Go to School, Follow the schedule. We outlined his privileges he could earn and the consequences for breaking a rule (which we need more help with.) We told A that he has to do it, or we will send him to a residential program. We didn’t want him to feel rejected, so we sort of wrapped it all up with how much we love him and think he is great. He got the message. I just wish I hadn’t made boarding school sound like a punishment, because the more I looked into it, the more it sounds like a great place for him- where he could finally excel academically and also get the emotional support he needs.

A rises to the occasion and is following rules, attending school, earning his tokens. But, last night he started coughing and sniffling. I started worrying he was getting a sniffing tic. But my fears were put to rest this morning when I took him to the pediatrician who said his chest was so tight he needed to be on an inhaled steroid twice a day and nebulized every two hours. We had two great days and now this.

A handles things well almost all day. B’s school is closed today and they were together without incident most of the day. When it was time for A’s Dr. Hamway appointment, however, A won’t go. He was not finished with a breathing treatment, but I told him it was okay to come back to it later. No dice. I am not going to beg or plead or get upset. “A make a choice to come or make a choice to freeze privileges.” He doesn’t come and is getting agitated. I take B and H with me so D doesn’t have all three.

Dr. Hamway and I speak briefly and he tells me that although everyone agrees A has emotional issues that impair his ability to function, etc. it still seems as though A is “holding the family hostage” with his behaviors. I completely agree, but have, over the last few days, decided that it can’t be this way anymore- we have been working for so long trying to change things. I can’t have H and B suffer anymore. And it’s not fair to A either, but I just don’t know how to change things. I don’t get a chance to ask because B and H want a turn to speak with the doctor. We all chat and B does his usual sitting on the arm of the couch and sliding off, pulling a book from the bookcase, interrupting, saying he’s bored. We leave with an ADHD diagnosis for B. I come home and tell D I need more time to be in denial before we can address this.

 I do peek at the DSM criteria for ADHD, which I’ve looked at before- except this time I notice he doesn’t need symptoms in “A” and “B”– six in B is enough for a diagnosis of ADHD, hyperactive type- B has all of them. Yeesh. But, he is so different than A- I guess he is “just” ADHD and A was so much more, we just didn’t know.

D and I have talked a lot about boarding school. We agree it may be the only way A is going to get healthy.  The websites actually look great and it seems like an incredible opportunity for him and us. I’m all gung-ho until I think about leaving A in Texas. Thinking about doing it again is almost too much for my heart to handle. But this is different. We would see him on a regular basis. He would be engaged in incredible hands-on learning and projects 24-7-just what he craves.

The best part about thinking about boarding school has been that it’s taken a weight off my shoulders. I don’t feel like I have to force A to follow our rules, go to school, be respectful. We’ve set up our system. If it doesn’t work we have options. Really good options. Ironically, for the most part, A is falling in line (okay, for two days– but still!)

We told Nechama she wasn’t a good fit for our family. The state agency that had sent her will be sending someone else next week. A will also be getting a behavioral assistant and a mentor who will take him on activities in the community. Just when I thought I’d come to terms with him going away all kinds of home supports are coming through!

Tomorrow he is allowed to bring his cockroaches into school to show his classmates. He was excited, but tonite, in his asthma med  induced mood he told me he wasn’t going. I didn’t react. And if he doesn’t go I won’t react. He knows that he has to stay in his room – no tv, no pets, no fun.

Welcome Home- NOT!

What a great weekend! Everything was exactly how I had envisioned it being- the food, the ambiance, the classes, the outdoor activities…it was hard to get in the car last night, say goodbye to J and drive off into the proverbial sunset. Hard because I had no idea what I was facing once I got home. D, A and I had a family session scheduled with Nechama from 5-7. As much as I kept explaining to Nechama that I would be away, she kept telling me it was important that we all be there together. D and I agreed that I would come for the latter half of the appointment and he would handle to beginning so I wouldn’t have to rush home.

I make it home and see my boys- who saw a bear on their camping trip! We don’t have much time to compare weekends, because there is work to be done. We have asked Nechama to make sure we get the school plan done and come up with a credit and reward system –we feel we’ve waited long enough and we have to have one ASAP. We roll up our sleeves to get to work, but there is a lot more talk about parenting and reaffirming who is in charge, but little gets done in the way of concrete planning. Nechama does say that A needs to attend school for a certain period of time to earn the annual shark trip he and D go on. D isn’t pleased. I’m ambivalent and willing to try anything, but I know D is usually right. He tells me later that the shark trip at the end of June is not a quick enough reward for attending school in May.

A is very upset by this. I keep telling myself not to sway. Nechama talks to him about the reasons why there are rules and why he has to go to school and how everyone has responsibilities. D and I know it is a meaningless discussion that will not end well. A doesn’t understand reasoning. As good as he “looks,” he cannot process the information fast enough to have a rational discussion and the internal frustration he experiences will cause a rage. And, sadly, we were right. After quite a long discussion A threw a water bottle at us and then lunged at me, punching me in face– got him down on the ground and then went through the usual routine of restraining him. At least Nechama could see what we were talking about.

A eventually calmed down and Nechama left, apologizing for leaving us without a concrete plan, but praising A for calming down and going into his room at the end of the rage, and letting us know how much progress she sees.

I get everyone to bed and look forward to getting into bed with D to talk about our weeekends and what to do from here about A, etc.

Except D is asleep and I am left to process it all by myself, again. It is hard not to take his sleeping personally –of course he is tired from a long weekend of camping and he has to get up early, but we all make sacrifices for things that are important. I think about what it was like when we are in our 20′s and so passionately in love and my heart breaks. We have been changed by our circumstances so much that it hurts.

It’s a new day and I’m up early- eager not to define who I am by this past year- a decision I made this weekend. I am not going to eat crap because its been a hard year. I am not going to cry easily because its been a hard year. Im not going to give D the cold shoulder because it’s been a hard year and I am not going to get easily angered by children because its been a hard year.

Of course, that is easier said than done. I make breakfast but A doesn’t like it. He eats a little bit and the bus comes. I help with socks and shoes. Time to go. But he won’t. He’s hungry and I never listen. I am so fed up with this and I am fed up with stickers and warm fuzzies and withholding a shark fishing trip (as A said last night, “ISn’t Nechama supposed to be encouraging me and Daddy to spend time with each other?”)

I will not be defined by this year or my ill child. It sounds stupid even as I write.

“This is your responsibility and your choice. You will either get on the bus or, as much as we love you and want desperately to have you home, I will make plans for you to attend boarding school.” I try not to give much back and forth conversation and I leave to bring the other kids to their schools. A doesn’t come out. I send the bus away.

I am at a loss. I am so sick of every conversation being about how to get A to go to school, follow the rules, etc. I am so torn by my understanding of how hard life is for him, by how hard he makes life for everyone else. I don’t want to have meetings about this anymore. I don’t want to read books or watch videos. I want action. I want help.

I make my rounds for drop-off.  I text A and tell him he can come now and start over- I will drive him. He texts back. “I think we can work together and I won’t have to go to boarding school.” I indulge the texting a little to hear his idea– but it doesn’t go very far- he doesn’t want to go to boarding school but school is too stressful and won’t go.

I call Rachelle at Meridell. I had pretty much written them off because I had left so many voice mails that were never returned during his initial return home. To my surprise I get through and Rachelle had very good advice. Stop waiting for someone to help me come up with a plan- I know what is best. Give him a token for every difficult task he has to do each day. Then he gets rewards for them. Let D and A do their bonding trips un-earned, as long as there are some motivating things to earn as well. Sit with A, tell him the plan (she thinks he isn’t able to work ont he plan with us because of his slow processing,) and that boarding school is the option if the plan isn’t followed. She also will talk to Dr. Kroll about tegretol. And she referred me to www.successplans.net who will fly to anywhere in the country to assist with parenting a child who has just come home from a residential program. I am awaiting a return phone call. A is asleep. I am tired and want to go back to the spa. B’s school called- his sprained pinky hurts and he wants to come home. D is leaving early so we can make a plan. I am very appreciative of his help today and hope we can turn it into the passion of yesteryear, but think life has taken over.

You Could Hear A Pin Drop

No one is home except for me. The dog is at the sitter. A and D are sitting around the campfire and B and H are at my mom’s. It took a full day to coordinate,pack, and drive to empty out my house, but I did it! I’m alone. It’s actually lonelier than I though it would be. But tomorrow is going to be great! J and I have made our appointments and class reservations at the spa:

Saturday:

Facial with Eye Rescue    11:00 am‑11:50 am

Trail Biking                                           2:00 pm‑ 4:30 pm                                                    

Sunset Kayak                                        6:00 pm‑ 7:00 pm                                                    

May 16, 2010

Sugar exfoliation, body wrap and massage                   10:00 am‑11:40 am

Watercolor                                             1:00 pm‑ 3:00 pm                                                     

Cooking Demo                                      3:00 pm‑ 3:50 pm

I come home to an in home therapy session Sunday evening- D, A, Nechama and me. It may be hard to leave the spa!

D and I had some time alone today which we really needed. Fridays are his days off, so I think we will try to spend them together more often, although it’s sailing season and after 15 years together I am smart enough to know that I am no competition for a sailor’s love of his boat. I got to spend a really nice afternoon with B and H today too. B was sweet and funny and nice–I needed that. H and I joked about who she is going to marry one day, about how embarrassing it is that I don’t know that Justin Beiber has an earring in each ear. It was just what I needed to go away guilt free!

A is doing ok. He went to school Tuesday through Friday–the most days he has gone consecutively since he started his new school. D and I told him how great that is. A thinks it is deserving of a pet rat. He is wrong. Very wrong.

A is still really moody and pretty mean to his sibs. He can’t walk by them without hitting or cursing at them. I’d like to think it’s not constant- that I’m just not remembering something fun they did together this week, but I think it’s pretty much anytime they are together A can’t stay calm. He has his very sweet moments with D and me, which we desperately need. He also has his awful moments with us- which we could do without, but no raging this week and no restraining. YAHOO! If we could get these other behaviors under control I feel like we will be home free. I do wonder though, is his irritability because he is depressed? And can we get to the behaviors if his mood isn’t stabilized? I guess we will find out. I am desperately hoping that together with school and Nechama we get a reward system going ASAP. I think we will get a clear understanding of what is “learned behavior” and what A simply cannot control.

But, in the meantime, for the next 48 hours my biggest dilemmas will be pink or red nail polish, sugar or salt exfoliation and whether to have an in-room massage or venture to a treatment room.

School Shmool

A has had a few pretty bad rages over the last few days– seems like it is on a daily basis now. And, he says that D wants to kill him when D restrains him. A really means it. It is scary. Yesterday morning, when B kicked A for using his stationery supplies, D had to restrain A (I was in bed “sleeping in” for Mother’s Day.) D says he barely touched him, but the screams coming from A were horrible sounding- and the repetition “I WANT MOMMY I WANT MOMMY!” in his usual possessed screech. I relieved D and also barely held A. When A told me D wants to kill him I said, “A, your mind is playing tricks on you. He’s your dad, he loves you. He doesn’t want to kill you.”

A kept insisting, “If he doesn’t want to kill me why did I feel his hands around my neck?!!!”

I decide to try some logic- “A, if Dad wanted to kill you he would have already done it. I mean, he’s bigger than you and could do it. But, he doesn’t want to. He loves you.”

I told A that as soon as his rage cycle was over he would feel better and realize that it was his mind playing tricks. Later, when everything was calm I asked A if he still felt that way and he said, “No, Dad was near me and really nice, so I know that it isn’t true.” This scares me because it is sounding like psychosis is creeping back in.

All in all, minus the early morning, Mother’s Day was  really nice. I got lots of handmade projects and cards and really loved them. The kids and D really tried to make me feel special and appreciated. And it worked.

This morning B was very excited- I would be chaperoning a field trip for his class. It meant the two of us leaving the house earlier than usual. My mom came over to get H to school and A on the bus. 8:15. That’s the time the bus is supposed to come. And, apparently, the only time A will get on. H calls me while I’m on the field trip bus with 20 kindergartners. “Mom, he won’t go. A says he is supposed to go to school at 8:15. The bus came at 8:25. So he won’t go.” I tell H not to worry and get off to school. I tell my mom to leave A with the cleaning lady. I don’t want to take away from B’s thrill, so I have D handle it from work. He has a Spanish speaking crew member call the house keeper and she is fine with staying until 1, when my mom can get back.

I make a few phone calls to therapists and school while the wheels on the bus go round and round. No one seems panicked that A won’t go. No one seems to think this is urgent. Except me, of course. Everyday he doesn’t go to school is another day that he knows he doesn’t have to go to school. “He’ll make a friend or find an activity he really likes at school and then he’ll go.” That’s the resounding mantra. But I don’t think so. I think A has anticipatory anxiety about what will happen on the ride to school, about the classroom being too loud, the math being too hard.

A and I speak about it. “I am going to school everyday this week. Don’t worry, Ma.” Who me, worry? Ha!

A says he got frustrated waiting for the bus when it didn’t come on time. “And I didn’t know what to do with the frustration so I didn’t go. And anyway there are too many kids in my class.”

I have a long list of appointments and errands (and work!) tomorrow. Fingers crossed…

The Best Day Ever

Today was the best day ever- and it had nothing to do with A. Or, actually, it had everything to do with A. I booked a weekend away for myself! Next weekend D is taking A on a cub scout camping trip and my very gracious mother offered to watch B and H. I was consumed with guilt for weeks- how could I leave them again. I should take the time to do something fun with them. We really could use the money for expenses, meds, etc. Tonight I finally made the reservations- it’s only one night, not two like I had hoped for, but girlfriend getaways have gone up in price since last time I looked and I needed to stay within my budget. I’m going with my sister-in-law J and cannot wait! We are headed to a destination spa where there is kayaking, mountain biking, geocaching, hiking, yoga, swimming, cooking classes, water color classes, great food and big fluffy beds. I am a little worried I won’t want to go home.

But, home today was pretty good. A went to school. He had a great morning, but once it was time to wait for the bus, it was like the anxiety washed over him. He had to change his pants because “water” got on the ones he was wearing–nothing was really there, but he gets it in his head that a speck of water and kids will say he peed. Then he told me that he would not get on the bus until 8:15 and if the bus came later then he wasn’t going to go. The stars must have been aligned because at 8:14.30 the bus pulled up and A went. VICTORY!

A had a Dr. Hamway appointment afterschool. He went with no problem. Dr. Hamway commented that you would never have known A had an issue last week– that’s his signature– you never know what you are going to get from one minute to the next. Dr. Hamway wants us to work on A’s bedtime routine and getting him to sleep in his own room for the whole night.  He reminded me that it will be a struggle at first but will get easier. It seemed like a weird thing to tell me- like stating the obvious, but when A balked at the idea tonite it was good to remember what Dr. Hamway had said.

A had a baseball game tonite. He continues to amaze us with how well he is doing with typical peers. It’s a far cry from a  few years ago when I would sit in the stands and cry when he paced in the dug out talking to rocks in his hand while the other boys laughed at him.

So socially things are looking up. Athletically, well, let’s just say that when he got hit with a pitch it was a relief not to have to see him strike out. But he did get hurt. He cried and his teammates walked him to the dugout. I had to almost physically force myself not to go to him. I wanted to scoop him up and wipe his tears, but instead the coach socked him in the arm and told him how tough he was.

A loved the attention– maybe a little too much. He told everyone he was sure it was broken and he would have to miss school. I told him that we would wrap his arm in an ace bandage and put him in a sling. I would even write a note excusing him from gym tomorrow. A was grinning ear to ear. I think I averted a school refusal.

A collects medical supplies, but he was sure he didn’t have a sling and he grew more and more impatient in the car when I wouldn’t take him to buy one. I don’t really know what happens to him in this state, but he keeps saying over and over, “Mom you never listen. You never listen. Would you listen!!” It’s such an altered state that there is no reasoning. We made it home and I started my hunt for the sling- which I couldn’t find. I tried to let A know that I knew he was frustrated and that he was handling it better than ever. When I say stuff  like that sometimes it agitates him more. “Want me to get mad instead?” I give it no mind- he needs to hear the good and I am no longer going to give energy to the negative. It’s so hard. He can be so mean and so hurtful. I hear him throw something– it’s a cup of water. ” IA SOOO ANGRY!!!!”  I tell him it is great that he is stating how he feels instead of acting on it right that minute (while a seond ago he was hurling water at electronics.) He asks me why the cable box went off. I explain (calmly, of course…) that the water got into the box and we need to dry it so there is no fire. I guess I didn’t need to be that dramatic, but I knew it would stop him in his tracks. And it did.

I agree that he can call D to ask him to pickup a sling that A will pay for with his allowance. I have a feeling A won’t like it and is going to have a meltdown. D tells me he will buy a few and then return the ones that A doesn’t like. Sounds good in theory, but A is going to lose it. I brace myself. I text D so he is prepared.

But I am wrong! A likes the first one and happily wears it. We talk about how he will wear it to school tomorrow and he is feeling fine about it. I praise A all over the place.

Next- bedtime– in his own room. A doesn’t like the idea. I tell him I will lay with him. Somehow he thinks that means all night — I don’t correct him. He falls asleep. I hope he doesn’t awaken in the middle of the night mad as can be when I am not there. I did warn him that if he doesn’t see me it means I went to  the bathroom or one of  the other kids needed me upstairs. I worry that he needs to know that he is capable of functioning in reality. I remember this from when he was in Four Winds and he thought I was sleeping in the car in the parking lot next to his unit. The staff made me tell him the truth.

But today nothing can keep me down…I’m going away! AWAY! AWAY!!!!

Made It

It’s Sunday night and we made through the weekend relatively unscathed. Mostly because D took A away fishing on Saturday. Sunday they went also, but A was so bossy to a friend they brought along, they ended up leaving.

Friday we had a big meeting at A’s new school- with the school therapist and people from our “home team.” Our in home therapist, Nechama, a parent suppport person and our case manager. It was pretty overwhelming. I never did understand the purpose of the meeting, but it was good that there will be a home/school connection. I think that can make a big difference.

I spent a lot of the meeting feeling like no one was understanding what I was saying. And, I felt the same about them. It sounded a lot like, “BLAH BLAH, boundaries. BLAH BLAH BLAH chart. BLAH BLAH BLAH BLAH support.” I will say, Nechama’s messages came through loud and clear and I left with a much better understanding of how to use her approach– it was actually pretty simple– anytime A (or any of the kids,) breaks a rule, you say, “You broke a rule. Reset.” Reset is the new “time-out.” Rahter than be removed from a situation the child stops the behavior and then the whole family moves on.

I like it because we no longer have to struggle to remove A (and B- but never H )) from where they are and make them stay in timeout. B does really well with this. His behavior has been building and building but he really was fun this weekend – I’m sure not being around A helped.

A gets annoyed with the new techniques. He hates when I comment on what he is doing, or how impressed I am with something. But, he seems to be responding also. I think the biggest change is that I see how often A is actually do the RIGHT thing, rather than acting out. So, it’s a fresh perspective.

This evening was hard though. I don’t even know what led to his meltdown. He had a very quiet afternoon home with legos and tv (he is building amazing lego creations! I never thought he would be able to do that!) This was a great “reset” from his behavior early- A had a girl come fishing with him and D– she is someone we met at the dog park- an “older woman” of 12. She seems to have some social issues as well. So, when she took a liking to A we embraced it. A does pretty well with her, although he told me she asked if he thought she was pretty and he told me he was afraid to say ‘no,’ because she would be upset, and ‘yes’ would mean he LIKED her. Kinda cute.

When A was irritable this morning, his friend told him she didn’t like how he was bossing her around, and furthermore, she didn’t like how he spoke with his dad. Gotta love the articulation skills of girls!

Not sure if A “got it,” but maybe on some level peer pressure will help.

I praised A a lot for his calm afternoon. He wanted to clean animal tanks, but I was busy making “breakfast for dinner.” A new invention of mine to make things more fun around here- I gave everyone a menu of breakfast items to order and then I would cook them– except everyone ordered something different- pancakes, french toast, omlette. I thought the kids would get a big kick out of it, but I think the joke was on me!

A was growing impatient. He was starting to curse and get annoyed by typical family sounds. I came in to help him but within a minute he had cursed at me. I told him he broke a rule and he needed to reset. “I DID! SORRRRY! Now help me.”

But nothing I did was right and A got more and more upset. I told him I was going to walk out until he was able to reset. But instead he followed me and punched me over and over. I felt awful because Hannah witnessed it. “Doesn’t that hurt Mom?” YES! “Then why do you let him do it?” What is my answer? I was trying really hard not to physically stop A, because I think it gets him more upset sometimes. On the other hand, A is almost begging for me to physcially get him under control.

I stayed calm, and matter of factly said, “A, you need to reset.” I felt like an idiot. There aren’t many people in this world who I would allow to punch me and then the only reprucussion is “reset.” And, it didn’t work anyway. A continued his rampage throwing, kicking, etc. I didn’t restrain him until he really needed it and was going to hurt me. (H was already out ofhte room- I had taken the advice of my therapist who told me rather they yell “GET UPSTAIRS AND LOCK THE DOOR” like there was a terrorist in the house, I should say, “Please leave the room so your brother can calm down.” She was very good about it today.)

But I did have to restrain him. At that point I didn’t really know what to say to him. What does our new strategy say to do? So, I just hung on and occasionally told A that he could calm himself down, etc. After a few requests for water, and then cups of water being thrown at me, and a few failed attempts of letting go, he did calm down and “reset.”

I wanted to give him his meds — he didn’t want them “They aren’t working. It’s still happening!” I felt so bad for him. There have been so many times that he has shown great control but the occasional rages are what sticks with him. I tried to get him to remember that this hasn’t happened in many days and that he is making so much progress.

The rages still seem to have such a “seizure” quality to them. We just got the new month’s prescriptions filled and his keppra, the mood stabilizer/anti seizure medication, is still the generic (although we’ve been told the breand would be better, but even with our new script insurance, the brand would be $360 for the month,) but made by a different company. That is the only difference there has been. I know that we can’t react to fast to any med changes,etc. We just need to sit back and watch. I hate that. It feels like my perspective is so skewed. What should be obvious isn’t.

This weekend was a nice mood switch for me. I had a rough week in my mind last week. I recall a conversation with a waitress about her children. “Yeah, girls can be so tough. You can’t imagine what it’s like to have 2 girls.” I instantly felt like we were from a different planet. That feeling never left all week. It was so isolating. There are very few people on my planet. And, it’s really hard to let people come to this planet- even for a visit. I always loved the company of friends and family, but it feels like when I let my guard down and “let them in,” it backfires. So, here I am on this crazy planet- just me, d, and the kids. I do have some good friends on this planet too. thank goodness. But, I miss the family gatherings, going to friends houses. But, this weekend was my reset. I almost convinced myself that A was a typical kid and had we just parented differently from the start we would have avoided everything. Then he raged tonite- almost a welcome reminder that something is different.

Baby Steps, Baby

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

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…

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?