Friday, May 14, 2010

trudging a bit...

Well, things have been kind of 'sloggy' around here as of late; lots of pressures and things to do and illness but never a break, it seems. We managed to make it through the winter with nary an illness, but this spring we have been dogged by illness; one after the other. Currently we have Mas recovering from his 'fluid-in-the-lung-and-in-the-ear' infection, and then I managed to catch it, and I can report to you, (since Mas could not) that it feels like someone poured super glue into my lungs. Really heavy super glue....maybe concrete is a better descriptor. At any rate, I have been coughing until I see stars and my hands and feet get tingly....this is after tylenol with codeine. It scares me because I don't know how Mas is ever going to clear this. He is still on an antibiotic for his; about 1 1/2 weeks into it and still he coughs. His cough is probably not weak in the medical description of 'weak cough', but, it is a weak little cough nonetheless, and not much moves when he does it. It's one thing to be sick yourself, but quite another to watch your kids be sick. We are always on *high alert* when he has any infection in his lungs, since things can go south so quickly when that happens. That being said, we are watching him closely and doing all the preventative things we can.

On the school front, somehow, (still not sure how) we managed to snare a Complete Team for Mas; by complete, I mean we have a team of people working with him right now who all Do Their Jobs. I know. It's a very cool thing to have happen. His main teacher is currently out due to her baby being born early, but even with losing her momentarily, (she's a gem) things are going very smoothly at school. We have a new behavior therapist who thought it might be a cool idea to actually **observe** Mason, and then she wrote up a new treatment and care plan, and then she trained the staff on how to follow it, and now she is going to make sure they are implementing it correctly. I cried when I read her email; how amazing that she is going to all of this work for Mas. (And yet, shouldn't it always be this way??) The thing is, in society today, we are all lucky to run across people from time to time who know how to do their own jobs. It doesn't happen very often. If he is able to progress and move forward, the time is now and the people are in place. The rest is up to Mas and God.

Our big push for Mas right now is controlling his behaviors. Due to being stuck in an environment for almost 5 years now where hitting, scratching, hair pulling, shoving, spitting, etc. happens all day long, Mas has developed quite a unique repertoire of behaviors. Of course, some of them he had when he started there, but I can testify to the fact that he has learned quite a few of them by watching his peers closely while at school. Combine that with a behavior therapist who did not observe Mas, (she was the one who was replaced) and the behaviors have kind of run rampant on us. We are not only presented with a behavior, but also a range of options as far as what do we do about them? Early on our behavior therapist liked to use "extinction", which was basically ignoring the behavior. That is only as successful as the staff carrying it out, though. Even if they look or smirk or just acknowledge the behavior in any way, Mas notices that and keeps it up. Other methods have been redirection, trying to keep him from getting bored, time-outs, losing items, etc. Here's an example: Mason spits on the ottoman. He puts his finger in it and starts to kind of 'zone out' and do finger-painting-like movements with it. Do we wipe it up? Do we ignore it? Do we have Mas wipe it up? Do we wait until he turns around and then wipe it up? Do we say anything about the spitting? And so on, and so on. This is how it goes with every single behavior he has.

Luckily for us, we now have a behavior therapist who is One Smart Cookie. She is two steps ahead of Mas and is not fooled by his impish grins and belly-busting laughs. She is highly observant and has been trained to 'know what to do' in those situations. We feel incredibly relieved, but also a bit frustrated that we couldn't have had her five years ago. I guess a person has to experience the lows to appreciate the highs. At any rate, we are pinning a lot of hopes on the fact that she will be able to help us out a lot. If you are the praying sort, say a little prayer that she is able to help guide us to get his behaviors under control.

These behaviors don't just make his school days long and difficult, but they are starting to interfere with our life at home. I have been struggling for some time over what exactly to do about them. The short answer is to make him a resident at his school and let someone else deal with it. It gets more and more probable-looking each year that passes by. The problem we have with that is, how do we explain any of that to him? How do we let him know he has to sleep there and stay there? How do we tell him his home is now just a place he can visit on occasion? It is an awful, awful spot to be put in as parents. We know we just wouldn't be able to live with ourselves or with that decision if we were forced to make it. The other option is to make things work while keeping him at home. I feel we have sacrificed a great deal to keep him home these 12 1/2 years; I have basically become a hermit and truly have very few friends that I am able to keep in touch with. (The good part of that is you sort through the fluff pretty quickly and really find the friends that are true.) We have adjusted our entire family schedule around Mas and his sleeping/bathing/eating habits. His sister has had to deal with us having to consider Mason's mood, health status, behaviors, and schedule before we can decide to do anything as a family. We have dealt with drool on the windows, windowsills, carpet, tables, dogs, etc. We have dealt with changing diapers for almost 16 years now. We have tried to incorporate him and his demands into our lifestyle, but it is no easy feat. I just told someone the other day, "I love Mas, but I hate the work he takes." That is the truest description I can give.

I guess we all have our jobs, and some days it feels like you are just cruisin' through the day and everything is going A-Ok....other days, it feels like you are carrying the weight of the world on your shoulders and if something doesn't give, you will break. I feel like we have all been bending an awful lot lately; it would be nice if our burdens would ease up just slightly so we could at least stand up straight...if only for a moment.

When I was volunteering up at the local school about three years ago, an elementary music teacher was visiting with me about Mason and my life since he was born. She asked some questions about him and then said, "I can't IMAGINE not having to work." I cleared my throat and said, "I work." She said, "Well, when he's home, but during the day, I mean." I just about lost it. It's amazing to me that people just do not get it. When he is home, it's like having a 12 year old infant who is mobile. When he's gone, that's when I do all things that other people do during the evening hours; dishes, laundry, cleaning, gardening, dog baths, dog walks, meal planning, etc. I have since been tempted, on many occasions, to invite this woman over for a day to see how our days play out. I wonder if she would still say that I don't work.

A typical day the past few years has consisted of the following: waking up to urine-soaked sheets, changing the sheets and the waterproof mattress pad, washing all of these items in bleach, changing Mas into his clothes for the day, cleaning the smell of urine off of his body, feeding him breakfast, giving him meds, brushing his hair and teeth, taking him to the bathroom and hoping he will pee before the van arrives, (most times he urinates after we've sat on the toilet, which means taking him back to the bathroom to re-dress from the waist down...if we're lucky...sometimes it also involves his shirt) having him lick the screen or the window of the door and throw toys around while we wait for the van, having the van pick him up, continuing to wash his sheets/clothes/pillows, etc., doing the laundry, doing the dishes, cleaning the house, gardening, taking the dogs for a walk, running errands, buying his many supplies (diapers, wipes, certain foods, etc.), gassing up the car, buying groceries, mowing the lawn, weed-eating, dealing with any school items that he is in the middle of (IEP preps, therapy notes, teacher notes, etc.), stocking up items to send in to school for his backup supplies (including diapers, wipes, bibs, shoes, socks, jeans, shirts, etc.), dealing with his speech device issues (charging them, dealing with maintenance, washing the food-encrusted covers, programming them, etc.), bleach cleaning his bathroom, keeping the supplies stocked in his bathroom and bedroom, cutting pills in half for his daily meds, washing assorted urine-soaked clothes when he gets home from school, plugging in his speech device, looking for any notes in his backpack, reading emails from his teacher and therapists during the day, making a meal for him, and then usually at least one other meal for the rest of us for supper, keeping him on a tight schedule for supper and bathtime and bedtime, keeping his shows organized on our dvr, getting him drinks in a straw cup with a lid so he doesn't spill, feeding him his meals, picking up a mountain of toys at the bottom of the stairs a couple of nights a week, spot-painting divots in the sheetrock from him throwing toys, cleaning the windowsills/tables/furniture with drool and dried food on them, never leaving things around that he could throw or ingest or hide, cleaning him up in the bathroom from bowel movements, triple bagging the diapers so the house doesn't reek for hours, bathing him, changing countless soaked bibs, putting him to bed and hoping he will go to sleep right away, listen to him pound on his window for hours if it is raining or snowing, going in to try to settle him down only to close his door and hear him get right back out of bed, tiptoeing around the house so as not to wake him, dealing with his night-waking spells that occur about one week out of every three months (4-5 hours of being totally awake in the middle of the night), saying "I'm sorry" and "excuse me" to strangers whenever we need to take him shopping or out to eat, having him spit food when we are eating, enduring endless stares and rude comments.....this list just goes on and on and on and on and on.....

As I said, it would be nice to invite this woman over for a reality check sometime. I don't think any of us realize what this type of job is truly like until we're in it. If I were a friend of mine, I would tell them the same things my friends tell me; get respite care, make him a resident at school, get away more often, do things for yourself, etc. Our society is just completely unaware of what a caregiver goes through on a daily basis. I think it is only normal to feel overwhelmed at times, and to maybe even engage in a few pity parties now and then. It's never a good place to stay, though. That's when things get too heavy and it's too hard to shake it off. I am hopeful we are just visiting the heavy side right now and that things will start to lighten as the weather improves and everyone's moods improve, as well.



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