Progress In Inches

We’ve made some progress this week! Maybe things are getting better!

(I know – I should shoot myself now for saying that. It will all go to hell now that I’ve made a positive parenting-related comment!)

Jack saw his therapist on Monday. Together they brainstormed ideas for how to deal with anger (besides hurting himself). Jack used one of these methods last night – he drew a picture of the thing that had angered him, then ripped it up and taped it back together in a funky pattern. This seemed to give him a bit more control over the situation and he was happy that he “showed it.” I was proud of him!

He has seemed to be more open to talking about difficult subjects since Monday. Back when Jack was diagnosed, we were given an activity book that is supposed to help kids explore their emotions about their chronic illness. Jack has mostly refused to talk about cancer at all before now. But last night I said I had a neat workbook that I hoped he would try and suggested that it would be helpful with some of the frustration he’s been feeling. I sat next to him and flipped through the book, summarizing the different activities. When I mentioned “Things That Make Me Feel Alone,” Jack said he felt alone when his dad takes him to the redwoods and also on an empty street. 🙁 He didn’t want to draw or write that down, though. I moved on and when I got to the one entitled “Things I Hate About The Hospital And Clinic,” he grabbed the packet and took off to the living room where his colored pencils were located. He drew a syringe, an elevator, a dressing change, and he wrote down ‘procedures’ because “I don’t know what they look like since I’m asleep.”

It was interesting that in thinking about it, he said there are several things that he doesn’t mind at all – i.e. the waiting, the examinations, the infusions. I made sure to point that out to him – it’s not all horrible even if it’s boring!

He went on to another page and drew the reactions of people around him when he was diagnosed. His picture showed indifference, the one of his parents showed worry, the doctor looked confident (“like ‘I know how to fix this!'”), and new people he met were nervous.

WOW. I was so relieved that he was actually expressing these things! Jack is a total people-pleaser and doesn’t want to talk about things that aren’t happy or cool because he doesn’t want anyone to be upset. It was part of the reason for the delay in realizing he had cancer – he won’t complain about something until it is unbearable. And even when he does complain, it’s understated – “my throat feels weird” becomes puke two minutes later. “My legs are floppy” means his legs are feeling weak and unsteady and he can’t walk well. The things going on with his body are generally the last thing on his mind (which can be good and bad).

We’ve been encouraging him since he was admitted to the hospital to complain more. I know that sounds strange! But his physicians would ask if he was having diarrhea or headaches or cloudy urine or tingling in his hands and we would have no idea. He’s king of “I’m fine!” But seriously, kid, we need to know if anything at all is bugging you because it can be a sign of something big!

Anyway, he’s getting better. He definitely complains more, although often still in a roundabout way. It’s weird when you have to suggest to your kid that he needs to eat or maybe he needs some allergy or headache medicine! And while I know what to look for to anticipate these things (hm, he’s very intent on coloring that dragon even though it’s lunch time and he is surely hungry!), others don’t and I’m not there all the time.

One thing he definitely hasn’t had trouble complaining about is clothing! It’s been an ongoing battle to find comfortable things for him and sometimes we lose the battle. However, I took him to buy (a third pair of) new shoes two nights ago and after trying nearly every pair in the store on, he was absolutely sure that some fur lined boots were The Ones. He freaking loves them. Yay! Now to find more pairs because those are not gonna last!

I’ve ordered socks without seams (they have them on Amazon!) and socks of various lengths and good quality in the hopes that we can get past his sock issue (also – he doesn’t feel right NOT wearing socks). And yesterday I ordered NINE pairs of shoes from Zappos that looked comfortable – some of which are fur-lined and others that are just fairly trim in design. I hope something works. Summer is coming and he’s not going to be able to wear those fur-lined boots forever. (I’ve tapped out my local resources for shoes – at least as far as how much I can afford!)

I’ve spent ungodly amounts of money on clothing for Jack this year. There should be a special charity for soft, comfortable clothing for kids with cancer!

David took Jack out for ice cream yesterday after he got 10 lilypads colored in on his behavior chart (he gets one each time he finishes homework, brushes his teeth without dawdling, and remembers to not maul the cat). We’re trying to reinforce the fact that he’s good and does good things because he’s WAY too hard on himself. The therapist said we should avoid charts with sad faces since he already focuses on his ‘bad’ behavior so much. Anyway, this seems to be working.

It’s a weird balancing act to parent such a sensitive kid. It’s nearly impossible to discipline him because he already punishes himself more than necessary! I’m not exactly a subtle person so it’s been challenging to dial back my reactions to some of the things he does – even a stern look will have him in tears in no time flat! Thank goodness I’m not more authoritarian – that would crush him!

The insight shared by you all has helped me, as well. I’ve learned that six year olds are very particular and kinda jerky. I’m trying to remember that his behavior is usually not a reflection of what I’m doing (or not doing) – it’s more about what he is feeling or trying not to feel. I can help guide him but I can’t fight all these battles for him.

So…progress for him AND me. I’ll take it!

The Littlest Disciplinarian

Living with cancer is no easy feat (duh) and the medications certainly don’t make things any smoother. There are side effects galore and dealing with those on a regular basis can be be SO incredibly frustrating. Aside from the physical effects, Jack has had difficulty with memory and regulating his emotions. Then there are those weeks when he’s on the steroid – and we are all tip toeing around hoping that we don’t make a joke that offends the kid and sends him into a depression spiral.

Jack’s done so amazingly well this past year dealing with all of the cancer crap that it really should come as no surprise that he’d stumble a bit. But still, it was surprising AND alarming.

I don’t recall when it started exactly, but sometime in the last year Jack started to get really upset with himself for forgetting things or doing things wrong and he would react by hurting himself. Sometimes he would hit himself in the face, sometimes he’d bang his head against the wall, and we even saw him push his thumbs into his eyes (cringe!). Not too long ago he came home from school and told me he’d put himself on time out during recess after a teacher asked him to stop bouncing on her shoulders.

We’ve told him over and over again how much we love him, how it’s our job as his parents to protect him and not let anyone hurt him – including himself! We explain that it’s okay to make mistakes and that we are there to remind him of what to do when those mistakes come up. His job is to try to do better in the future – not to punish himself for making those mistakes! This hasn’t seemed to get through to him, though.

Sometime before Christmas I sent a message to Jack’s Case Manager at the hospital to ask for a referral to a therapist. It was clear that Jack was having some anger management problems and we were at a loss as to how to help him express himself better. We were referred to the department’s social worker, who, unfortunately, happens to be the least helpful person who very much would like to help EVER. And so she called me and got some information and then sighed and expressed her sympathy and said she would get me some information so that we could take Jack to therapy. Except she didn’t.

A couple weeks later when I saw her at the clinic and she still hadn’t gotten me that information (and it was STILL an issue), I reminded her. Alas, no help came.

Then, in the epic awesomeness (ha) that was last week, we had another incident that scared the shit out of us. Jack was working on his homework but kept getting distracted by a paper monster sitting nearby. When David attempted to move the monster so that Jack could concentrate, Jack got upset and grabbed the monster and threw it. David reminded him that throwing things isn’t okay, and Jack responded by grabbing his pencil and aiming it right at his own eye. David grabbed it before he could do any harm, thank goodness.

But holy crap! Our six year old almost stabbed himself in the eye with a pencil to punish himself for throwing a paper monster!

So it was time to take matters in my own hands and I made an appointment for him to see a doctor that afternoon. After some discussions with the pediatrician’s office I was then referred to the intake psychologist in the psychiatry department, who gathered more information about our situation and decided we should probably skip the regular intake routine and go straight for an appointment ASAP.

Had Jack had any big changes or stressful situations in his life over the last year? Oh, gee, where do I start??

Has he ever said he wanted to die? Um, no! Shit! He’s six!

Thankfully, we got Jack an appointment with a child psychologist scheduled for Friday. I was told to keep all sharp objects, medications, cleaning supplies and other harmful things out of his reach. Which is just NOT something you expect to EVER hear in relation to your first grader! (And, well, he doesn’t have access to those things anyway! But David did hide his safety scissors from him just in case. And now he’s a bit behind on homework since pencils suddenly posed a threat.)

All of that and Jack wasn’t even on the steroids last week. He started those today!

The appointment went well. Jack liked the therapist and even drew him a picture that he got to keep (which is pretty rare). He and the therapist came up with the idea that rather than trying to hurt himself to teach himself a lesson and help him remember, he would instead draw a picture of what he wasn’t supposed to do and tape it to the wall in his bedroom. This has seemed to work so far – Jack now has a “DO NOT JUMP ON MOM” picture on his wall.

This week is steroid (Decadron) week, though, so we’ll see how it goes. We see the therapist again on February 4th. I’m hoping things won’t be too chaotic in the mean time. We could all use a less eventful week.

A little bit of discipline in my life

There is a part of me that really misses those earlier days of parenthood when all I had to worry about was keeping my baby alive and myself sane.  It didn’t seem like such an easy task at the time but at least it was fairly simple.  Now it’s not enough to keep the kid alive – I need to teach him stuff, too, and he is not quite as open to learning as he was as a little chubby, spongy baby.

Jack has been testing limits all over the place.  When he is asked to do something, he says “Mooom, I WILL – in 5 minutes.”  When that 5 minutes is up, he needs another 5, etc.  It’s not enough to give him choices or bribe him – he thinks even if he takes an hour to get dressed, he is still entitled to a reward.  And whenever he eventually does get around to doing what he is supposed to, he doesn’t want any adults watching him.  It’s like he is saying, “I can behave, but I refuse to do it for your benefit!”  Then there are the times when I tell him I need to take something away from him until he complies, he often responds with, “You can’t do that!”  It takes a lot of self control to not engage in an argument about what I certainly CAN do as his mother!

He’s been increasingly vocal about disliking going to daycare, as well – a place he has loved for nearly two years.  He claims he doesn’t like it there, that he doesn’t like the provider, that he doesn’t like learning or painting…nevermind that he is the last one to put his painting supplies away and many days when we pick him up he doesn’t want to leave.

Last week he started pushing some of the smaller kids in daycare (apparently because he doesn’t want them to touch his toys), and he has gotten into a “fight” with another boy his age.  Suddenly I am needing to discipline my kid!  We had a talk about appropriate behavior and I took away one of his favorite shows (Ben 10) until he could show me that he could behave at daycare.  There have been some major crying fits over this and that has been very hard for me.  My instinct to make him STOP CRYING is insanely strong and it kills me to hear him upset (and I now TOTALLY understand why some moms say “your dad will deal with you when he gets home!”).  I held my ground, though, and finally yesterday he got himself in gear.  He got to watch his show last night and this morning he asked if he could watch it again if he had another good day.  I said yes and then we talked about alternatives to pushing when the younger kids try to grab for his toys.  So…fingers crossed.

I’m not entirely sure what is driving Jack’s recent behavior (maybe it’s just a 4 year old thing) but theories include the testosterone surge that supposedly happens in 4 year old boys and the possibility that daycare isn’t challenging him properly anymore.  No matter what the case, we’re thinking it’s a good idea to channel this energy into something productive and maybe more physical like a tumbling class or peewee sports, where he can learn better impulse control.  His dad will be taking him an extra day a week soon and there are a lot of community resources for this type of thing in his area, so he’ll try some things out soon.

This is a weird place for me to be in.  I’m a real grown up now.  I’m that person saying, “You need to listen to me because I’m your mom and it’s my job to teach you about life!”  This more than anything makes me feel old.

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