Sundry

D and the Troublesome Pump

Remember that super easy, no big deal surgery D had last November? The one that was just routine? To replace his Medtronic Baclofen Infusion Pump? Well, as I have come to know, nothing with D is ever easy.

Around late December, he developed this crazy abdominal infection and the incision around the pump opened a bit and goo drained out. So, there was weeks of antibiotic injections and trips to the doctor to check it out. The doctors told us that in 95% of cases involving pump site infection, they have to remove the pump and start over again...after waiting for two months with no pump before replacing it.  Two months of choosing between crazy spasms or being drugged beyond recognition to prevent crazy spasms were not options we liked, so we were hoping that D would be in the 5% who could clear the infection quickly.

And one Sunday, a couple of weeks ago, I administered the last antibiotic shot. The wound had closed, D felt fine, it looked like we made it. Two weeks of good health followed and I thought we would be on our way for a bit.

Oh, No. That just doesn't happen for D.

Today I got "One of Those Calls." I had actually just put a pork tenderloin in the crock pot with BBQ sauce for pulled pork sandwiches, something that I'm not crazy about eating, the kids don't like, but D has been wanting for a while. I found pork tenderloin on sale so I finally acquiesced.  Right when I'm done with that, he calls me to tell me that he bent over or something and his incision ripped open and his pump pretty much fell out of his body. Like he could see the internal stitches used to secure the pump in place and everything.

Lovely.

So, to the hospital he did go and now he is scheduled for surgery tomorrow to take out the pump. They are going to leave the wound open and pack it, PICC line him with some Vanco, and put him on oral baclofen for the next two months.

Things I say to my SO that I bet you don't say to yours:

"Well, too bad, cuz I'm making BBQ pork sandwiches and now you're not going to get any since you went and let spare parts fall out of your body."

He is in a relatively good mood about it. Me? Not so much. I'm like thinking of how this will impact all of our next two to three months because of course it is going to be a big wonking thing that will mean a ton of things get put on hold or not done.

It will be okay, though. It is one of those things where it is as big of deal as you let yourself make it be. D and I usually try to keep things on the lower end of the Big Deal Spectrum. I doubt I'll get up there tomorrow for the surgery, but I'll probably take the kids up on Sunday. They like to go to the "hopisal." But they always ask me why they can't ride in the ambulance. (Done that. Don't plan on doing it again if we can avoid it, kids.)

Reason to Homeschool #635

Because I've had such trouble sleeping the last few months and have been really sick of the 24 hour kid duty, I have questioned my homeschooling resolve. At times it seemed like Kindergarten couldn't get here fast enough. I would daydream about shoving them out the door and having all those glorious, glorious hours to myself!!! My decision to homeschool has never been set in some kind of principled stone. It has always been what will be best for the kids, and me, and all of us as a family unit. If I were to be this tired and burnt out of kids by the time kindy came around, then it would be to nobodies advantage for me to homeschool them. I thought, maybe I will  put them in PS, and only if there are big problems will I take them out to homeschool them. Like, say, if the teachers start telling me they are ADHD and need to be put on twenty psychotropic drugs, then I will take them out.

And I still have not totally counted PS out. Again, it will be a decision I don't make until that time, and then it will be a decision that is re-evaluated from year-to-year. My district has rezoned AGAIN, and now the kids won't be going to the far away school that is impossible for me to get to, nor the two really close schools that I could easily walk to--but a school that is about two and 1/2 miles away. I can get to it with a small bit of public transportation effort. So, that is where that stands. They still might change it in the next two years.

But something happened the other day that reminded me of one of the many reasons I want to homeschool them. In the grand scheme of things, this is not that big of deal, but I just thought it was funny.

One of the things I don't like about PS and education in general right now is the narrowing of the definition of "normal" or "typical" or whatever you want to call it. It has been done entirely out of necessity. It is entirely a response to school overcrowding and high teacher:student ratios. The more kids in a class with a teacher, the more they need to fit a mold of typical. The teacher doesn't have time to individualize and adjust for differences. Thus, the only way to handle kids who don't fit into a very narrow range of normal is to push them off into special ed with labels like learning disabled, ADHD, behavior disorder, etc.

So kids now have 'sensory integration disorders' and 'auditory processing disorders' and they are 'bipolar' and whatnot. Now, as I've said before, I'm not saying that YOUR kid, the one with the auditory processing disorder or whatever? I'm not saying your kid really doesn't have auditory processing issues. What I am saying is, but is it really a disorder? Or is it one of the myriad of characteristics kids have in the normal spectrum of characteristics kids have? Ah! That word "spectrum." Used with autism and aspergers mostly, kids fall onto the Spectrum and are sometimes called spectrum-y.

OK. We ALL fall somewhere on the spectrum. But some experts have decided where the line is on the spectrum that qualifies you as normal vs. spectrum-y. The range of normal on the spectrum has been getting narrower and narrower. Now again, don't email me and tell me that your kid is on the spectrum and the wonderful special ed services he is getting have changed his life. If something is working for your kid, great. But does it have to be special ed? And does he have to be labeled with a disability to get those services? Or could we just incorporate these services into education for any and all kids who need them.

In my work as a sped teacher, I've always been amazed and amused by these hyper experts who will diagnose any kid with anything just so they can say they diagnosed them with something. Just so they can be an expert. I can't tell you how many times my mouth has dropped when a kid came in to be assessed with maybe a problem reading or whatever. And left with thirteen arbitrary diagnoses. Usually enough to put them on drugs or get them out of the regular classroom (aka overworked teacher's hair) long enough to give said teacher some relief. I mean, I've seen kids who probably need just some reading tutoring after school or a good, consistent behavior plan be diagnosed with so much crap that has been so obviously pulled out of the expert's ass. (Or pulled off some stupid assessment tool. Which is just something pulled out of the assessment tool creators ass. So its just once removed, but the same thing.)

So a strong motivator for me with homeschooling is that I don't want to deal with people with expertitis. (Not that homeschooling completely removes that threat, but it puts you more in control). I don't want my kids to be "disordered" into conforming to the narrow definition of typical. Or disordered out into the silliness that is most special ed programs. Now, I of all people have no problem with the label of 'disabled.' It is something I wear with pride. But disabled to me is about the community, not about the disorder. My kids are already indoctrinated into the community. If a legitimate issue comes along health wise that we have to deal with, then we will deal with it. But I'm not a fan of dumping my kid into the assembly line PS system where you either swim like the other kids or sink into the disorder/disability labeling soup that has been concocted by  the establishment.

Now, with that big build-up, this story is going to seem really silly, that this bothered me so much. But I just found it funny, that on the kids very first day of their very first class they have EVER taken (without me with them, at least), I got called back to the principal's office and got hit with a small dose of expertitis.

My plan in getting Aaron to stop destroying my house is to tire him out with something physical every morning. A plan that works really well when I can pull it off. I have signed the kids up for a couple of classes. One is this class at the gym that I go to called "Sporties for Shorties" where they take 3-5 year-olds to the gymnasium and just do little stuff like play basketball with the short baskets, or kick around a soccer ball or whatever. My father and I have been quite amused watching this class in the past. The kids are pretty funny in it. It is semi-structured. They have a circle time warm up period. They line up and run across the gym and back, they have little practice drills, and have some free time and then a cool down circle period.

The kids have previously taken a class in the gym called "little feet friday" where 2-5 year olds have a free for all in the gym. Aaron is fine, here. But it is too loud and unstructured for Naim. (It is VERY loud.) There also always seems to be very aggressive big kids in it, like 6-8 year olds who sneak in. So it is a rough room. The sporties class is quieter and more structured, and so I though Naim might do better with it. In little feet, he stands in the corner sucking his finger. Any improvement on that and I would be happy. Aaron is fine anywhere.

So, when I signed them up, I told the instructors that a) this would be their very first structured class ever; and b) they are behind on gross motor skills and will not be able to do everything the other kids do. Fine, they say. No problem. I told them that I just want them to have fun, run off some energy, improve their gross motor, and get used to following along in a class. Great, they say.

So they go to the class for the first day, and me, my dad, and my dad's cardiac nurse (he is in a cardiac rehab program at the gym) were all watching from a place where the kids couldn't see us. And it was hilarious. Aaron was happily running around. He did need to be herded a couple of times and he could not do the jumping jacks they did in the circle, but he did stand in the circle and watch with interest. He played with the balls, put them in the basket several times. Ran from line to line like the other kids with a bit of direction. Seemed perfectly happy with himself.

Naim came to the class about ten minutes late (a bathroom issue, I'm told). He came in when the class was in a bit of chaos. But he didn't have a meltdown. He mostly hung around either Aaron or one of the adults, and didn't do much. But I did see him put the ball into a basket once or twice and I did see him happily run around with someone holding his hand. He seemed reserved, cautious, but happy. They did as well as I could hope for and I was pleased all around. My dad thought they did really well. And even the nurse, who just met the kids that day, said they seemed to really enjoy it.

So I was surprised when I came to pick them up that I was called to go talk to one of the instructors. (There are three adults in this class, and about ten kids.) She told me, with the authority of someone with expertitis, that my kids "JUST WEREN'T INTERESTED" in the class. It was the way she said it, like the thing had been a total failure and they had no place there and I would be crazy to have them continue. And then she gave examples about how they didn't participate in circle time. (I had to remind her that they CAN'T DO jumping jacks, nor had they probably ever seen jumping jacks before or knew that terminology. That should not indicate non-interest.Perhaps they could work with them on that?) She went on and on about how they just didn't seem like they liked the class. And she seemed a bit taken aback when I said I (and my sighted reinforcements--always gotta have those to make my opinions count) had watched the whole class and had been pleased and thought they did quite well. I reminded her that they don't have experience in a structured class and can only improve there. I also reminded her that they can't jump, dribble a ball, or run with as much coordination as the other kids, that they JUST turned three and there is a big difference between three and five. And that they need time to get the system down.

I gave her one out. I said, I know they required a little extra help today. Is it a problem for you to have to take so much time with them? At this point, this is the only excuse I would have taken, even if I thought it was lame because the class had almost a 1:3 ratio. One teacher could have easily handled my kids plus one other, and if you are smart, what you do there is split my kids up and group them with a four or five year old. Not hard.

She said, no. Not at all. She seemed to be a bit insulted that I would suggest that they couldn't handle it. There was absolutely no problem at all with that. She just wanted to know what my 'expectations' were. Because she just worried that I might be let down.

WTF? Expectations? Lady, they are three. If they run around smiling and don't have a meltdown, I'm happy. Do I think they are going to learn how to play basketball? Um, no. Do I care? Not at all. I think what it came down to is that my kids are a bit of extra work, and she was too lazy to do it. To which I say, a) hey, I gave you and out there and you didn't take it; and b) if you are going to open the class to three year olds then you have to be willing to deal with three year old skills and three year old behavior.

What it comes down to, if she had been open and nice about her concerns, I probably wouldn't have cared. I probably might have thought that she was nice to be so concerned about them. But she pulled expertitis attitude with me. And I have enough experience as a teacher with expertitis that I'm not really intimidated by that. (It is sad how many times I've seen unsuspecting parents fold to the 'experts' demands.) Bottom line? The kids are still in the class. And hopefully, I was nice enough that she isn't going to go on an expertitis vendetta on them and start looking for failure in them. (A horrible side-effect of expertitis disease.) I think we ended up having a good conversation after a rocky start.

On Monday, they go to a tumbling class. And in this class I have arranged for them to be with the 18mo. to 2 yr. olds. So they will (for once) be the bigger and more advanced kids. If they do well, or if it seems too easy, I can move them up to the three to five class--no problem. I love nice, understanding, flexible teachers. Why is that so hard?

But, too also? The Aaron destruction machine has been on leave since we started the morning classes and activities, so yea! And we are doing Funshine Express "school" in the afternoon again (after I kind of blew it there for a few weeks) and they really enjoy "school time" and ask for it. So, I'm back on the homeschooling bandwagon again.

For now.

Morning People? They are Liars, All of Them.

I won't bore you with the latest updates on my crazy sleep situation except to say this:

All my life I have been told by my family how wonderful and useful and practical it is to be a morning person. My family extols the virtues of the Morning Person (cue angel music) as if by being a Morning Person (angel) you will have a better career, more money, more time in the day. You will be more efficient. You will be more ambitious. You will be smarter and have better sex. Or something. All my life I have watched my sister and dad jump out of bed each morning and make fun of me because I would sleep as long as humanly possible in the morning. And the ENTIRE reason I was not a morning person, according to them, was because I stayed up too late at night. But even when I did go to bed early and wake up early, which I could do if I had to, I still felt tired for a couple of hours in the morning. And this, according to my family, was such a slothy, shameful way to live.

I ended up taking Ambien for only four days. And then something weird happened. I became a morning person. Now, I'm not just saying that I switched my hours so that I went to bed earlier and woke up earlier, I'm saying that I became a true morning person. One who jumps out of bed with tons of energy at six am and who goes to bed within a half hour after the kids went and hit the bed snoring.

This is probably the first time in my life I have felt this morning person phenomenon. And guess what? It sucks. I don't know how people live this way. I don't get ANYTHING DONE.

It is nice to get up well before the kids and eat my breakfast in peace. But that's the only advantage I am seeing. What happens is, my morning time is limited by things out of my control. Once the kids wake up, my time is over. I have to stop whatever it is that I'm doing and deal with them. At night, I can finish up what I need to do and decide for myself when "my time" is over. The other problem is, I have chronic back pain issues, probably from being a blind chick that drags tons of stuff on my person while carrying a cane or dog and walking miles in lieu of throwing all my crap in my car and walking a few feet like normal people. That, and lifting and throwing around disabled people all my life, not to mention the thirty pound kids I've got right now. To go from six am to, say, 2:30 when the kids (sometimes) take a nap is living hell. I am in pain by 9 am. By one, I'm pushing myself to hold back tears and any chance I can, falling to the ground to rest my back. But I have a job right now (actually two jobs) where I am up and on my feet doing physical labor all day long. The rest periods just work better if I sleep late and stay up late.

But the main thing I hate about being a morning person is that, although I have lots of energy in the morning, I burn out by 5 or 6 pm. And I still have three to four hours of work to get through by that point. And it KILLS. I have never experienced burning out in the evening before the day is through. I'm cranky at the kids, I take shortcuts (ah, forget about brushing your teeth, kids. Just go to bed. And baths? Oh, forget it.) I can't get things done that need to be done at the end of the day after the kids go to bed. All I want to do is get myself to bed. And that push to get through things at night is a billion times worse than the push to wake up and get going in the morning.

In the morning, if you are a grumpy, groggy person like me, at least you know it will get better. You know that you can just start slow and work your way up and in an hour or so, you'll be fine. There is something to look forward to. Saving all the tired at night and having to push those last three or four hours? That is a living hell. There is no solution to it but to get the shit done as sloppily as you can and forget the rest. So many little things go by the wayside because I just don't have the night time energy to do them.

I always thought my family was such a bore because they came home from work, ate dinner and then plopped on the couch in front of the TV for 3 hours and did nothing every single night until bed time, promptly at ten o'clock. They were probably just exhausted. One thing I always remember about my mom is how tired she seemed all the time, especially after work. I don't want my kids to remember me as tired and crabby every night.

I'm sure this little morning person phase won't last. But it sure has been an eye-opener to see how the other half must live. The grass is not greener, and I want my quiet, get-things-done, chill-out nights back.

Comments

[leslie]

I'm sorry to hear about D's surgery - I can only guess how hard that's going to make everything for the next couple of months.

I know what you mean about the experts and labels. My middle child has NLD (non-verbal learning disability) and finding the right school setting has been an ongoing issue. We home-schooled her very briefly in 5th grade when she had a teacher who thought her issues were just bad attitude. This was before she was diagnosed. Now she's a 9th grader in a private school, one not particularly focused on kids with learning disabilities. Some of the teachers are fabulous, really get her and work with her. Others, not so much. Public school was fine until middle school (which was 5th grade here at the time). Punitive attitude towards anyone who wasn't perfect all the time. All three of my kids ended up in private school at that point for different reasons but it was what they needed. And you're right, learning differences aren't necessarily disabilities -we're not all the same. longer response than necessary- you hit a hot button for me I guess!

[Jennifer]

I believe all children benefit from sensory integration "therapy", as we all are born with the tactile, proprioceptive,and vestibular base senses, from which grow all other forms of intelligence, from posture, gross motor, eye coordination, and, ulimately, cognition and intelligence. Most children find ways to meet these needs for stimulation for these senses, others need unique ways to find input for these senses via input from occupational therapists specializing in sensory integration, or by parents who involve children in things like you seem to be doing. A lot of what you do you seem to understand can be done on your own time, like running around in the park, kicking a ball, etc. I passionately believe in using these techniques to better organize each infant's brain, and to optimize each child's potential. Good luck to you and God Bless.

[Lisa]

A lot of what you do you seem to understand can be done on your own time, like running around in the park, kicking a ball, etc.

Oh, no doubt. But my alterior motive is that this class gets my kids outta my hair for a bit. My father will be taking them and then putting them in daycare, giving me three whole hours by myself!

Also, I think PTs and OTs do great stuff. And there are obviously some kids that need these services more than others. My main objection is that kids have to pass a magic test to qualify under the arbitrary level of 'disabled' to get these services. Many teachers understand that this is an administrative issue based on funding, and don't take the "diagnosis" that seriously. But others, the ones with 'expertitis' build their ego around these diagnoses and seem to get off on touting them. They see all of these kid characteristics and needs as "disorders," a deficit from the specified norm, not a characteristic on the range of normal.

[Angela]

Sounds like fun time for the boys. My son enjoys running around with the older kids.
I hope everything goes well ith D. It just isn't easy is it.
I am glad you have worked out a way to get some time on your own.
I was a evening person until I started working full time now I have o be up by 6:30am and I want to go to bed by 11pm.

[[email protected]]

Great posts, as always!

Myself, I have never been a morning person so I always chose to work swing shift! But when you have small children, what do you do? Have you tried Rock Star? A few swigs of that and you will be ready for the most hyper child! Huge problems will seem petty and your appetite will be nil. :)

Way back when I was forced to work the a.m. shift,I actually got myself out of bed and excercised for half an hour each morning to get my blood in Drive! It worked. Many,many of us need a stimulus to get us going in the mornings. I am now retired and my husband tippy toes around in the mornings so he does not get bitten! It is difficult to change how we are, but there are ways to work around it. (Yawwwwn!)

[cherylc]

I'm sorry about D's pump. He must have been a little taken aback when it fell out. On the other hand, two months is not that long so I hope it passes quickly.

As far as morning vs. evening people, I think one can have either good time in the morning or good time in the evening, but not both, unless the person is really exceptional. I get up in the morning because I have too, and I'm exhausted by evening and it sucks. I totally bathe my child once a week and skip toothbrushing on occasion. I don't want my daughter to remember me this way either, but I haven't come up with a solution yet. Your schedule sounds like it makes much more sense when you sleep in the morning, so I hope you can get back to that.

[Alanna]

I love your point about how night people don't get cranky before bedtime. I think that having mom go through mornings in a fog is a small price to pay for mom who's fun at bedtime.

[shannon]

I can't wait until my kids are old enough that I can trust them to be in the house unsupervised when I'm sleeping. I will straightaway return to my sane and sensible 2 am bedtime and 10 am wake-up time.

It stinks that our culture is so morning-person-centric. You're not lazy because you sleep different hours than other people!

And this is yet another reason to home school. No need to get them up and dressed and on the bus (or worse--all the way to school) before 8 am!

[Mary Grace]

As a mom of three kids, I can tell you that all of them--yup, even the one who has actually been diagnosed with an "issue"--have *stuff*. The key is whether or not you let that *stuff* run your life or whether you choose to wrestle said *stuff* into submission and just get on with life. We chose the latter.

Finding a safe place for Atticus to just *be Atticus* when he was three was near to impossible. People looked at him like he had suddenly sprouted horns the minute he displayed any behavior that deviated from what their ideas of normal were. Let me tell you, playdates were few and far in between as I struggled to make sure that no one passed on their own biases to my boy.

He's now 7.5, very well adjusted, homeschooled and considered a leader in all of his activities: soccer, AWANA, etc. From spaz to leader in 4 years. Not bad, huh? :-)

Keep at it. Advocating for your kids is WORTH IT.