Yeah, yeah, I know; the crickets have been back around here. I've been in the midst of a major carpal tunnel flare-up, so typing blog posts isn't exactly the best thing for me to be doing. But it's late, and despite taking two benadryl and two fioricet (I've struggled with severe tension headaches since high school) I'm wide awake all by myself, so tonight I feel like writing.
Labor Day weekend I was excited to have a friend & her family staying the night with us. She and I met through a Catholic homeschoolers FB group, so this was our first time meeting in person. She, her husband, and four kids were such a joy to have in the house! There was definitely some wound up loudness that evening, but it was that happy excitement sound that I love to hear in the house. My disability has turned me into a bit of a homebody, but I love to have my little house full of people and fun. The only hitch to that visit was that Papa Bear was working out of state, so I was by myself getting the house ready and taking care of all the hosting duties. I may not have been quite as prepared as I would have liked, but sometimes that's a good lesson for me to not insist on perfection.
Sunshine and I started our new homeschool year about a week before Labor Day - 2nd grade! Sometime soon I'll have to post about our curriculum choices for the year. We mostly use a typical textbook approach, but I'm a bit eclectic in that I source all of our books myself rather than buying a full curriculum from one provider. With neither of my kids falling into a typical, age-appropriate behavior range, I can't imagine that sort of thing ever being a good fit for us. We've been a little slow going, but I think we're finally starting to hit our groove again. Her homeschool gymnastics class started about a month ago, 3 weeks ago we started back with Girl Scouts, and just today she started her catechism class and children's choir at church. Now that all of her extracurriculars are in progress, and Fidget's therapy schedule has become pretty routine, hopefully we can firmly decide what times each day work best for her studies, and what balance of subjects works best around our other goings-on.
Speaking of Fidget's therapy, his ABA is continuing to go well. His case worker Miss S came out today to do some parent training with me: teaching me how to run some of their program lessons when he has days off, how to improve his compliance, and how to better manage his attention-seeking behaviors: esp the negative ones, like last weekend's incident where he buttered the cat. Let me tell you, Earth Balance spread is not easy to scrub out of cat fur! S is coming back Monday evening to do the same with Papa Bear, and moving forward we may set up some parent training sessions for going our to eat, as that has been a huge behavioral issue. At home we can work through things, but it's hard to work through a kid throwing bean burrito in a restaurant! But with a trip to WDW in the spring, we very much need to learn how to manage it and help him cope. I have to say, I love that his therapy contract includes coverage for these parent training hours!
Now that we are starting to settle into our new weekday routine, hopefully I can start attending to some of my own personal business again. I've been holding onto a script for wheelchair repairs for over two months now, and I desperately need a new set of tires! I've got some other organizational projects around the house that I really want to tackle as I know the holidays are just around the corner, but I've got to get this CT pain to settle down first. Ironically I'm already scheduled for a nerve conduction study at my next neuro appointment in October so we'll see how things go then. I'm hoping he won't say it is to the point of needing surgery, but I wouldn't be surprised if he does.
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Tonight one of my favorite bloggers, Chrissy from Life with Greyson + Parker posted a list of ten random facts and invited her readers to do the same. So I thought I'd post them here and just link to it in her comments. Some I'm using the same categories she did, others will be my own. So here you go!
1. Favorite TV shows: I very much miss the 80's/90's family sitcoms. My absolute favorite of all time is The Cosby Show. Maybe it's because of watching Bill Cosby do all those Picture Pages on Nickelodeon as a kid, but Cliff Huxtable has always been my favorite TV dad. Aubrey loves to watch Full House with me, and as I have a lot of fond memories of myself watching Nick at Night with my mom (Donna Reed, Patty Duke, Dick Van Dyke, Lucy, Mary Tyler Moore, etc) I'm happy to indulge her and pass that memory on.
2. I've never really been one to struggle with major addictions, thank goodness. Not a smoker, not a daily drinker, never did any illegal drugs. But my one vice, which I know is bad for me but I love, is soft drinks. A can of Dr Pepper Ten is my version of a morning cup of coffee! Esp in the last almost-ten years, one of my medication causes horrible dry mouth so I always feel like the carbonation helps take that dry feeling away. And when I was pregnant, plain water actually made me more nauseous with both kids. Go figure.
3. I've had a big interest in the space program ever since I was a kid. I always wished I could have gone to Space Camp, and have sometimes pondered that if many individuals with paralysis can move better in the water, what would it be like to send a paraplegic into space? The Right Stuff and Apollo 13 are two of my favorite movies.
4. While I try not to overshare TMI details, I fully admit to posting a lot of mundane stuff on FB. I think part of it is that since I'm a stay at home mom, and don't drive, FB is a big source of adult interaction for me. I know it's not the same as being with real people, but at least it gives me a chance to be involved in mature adult conversation.
5. I started covering my head for mass at the beginning of advent last year. I was always curious why Catholic women quit wearing veils/scarves/hats to church, and when I started researching it I found that I wasn't really satisfied with any of the answers. Nothing I read seemed like enough reason to eliminate a practice that had been in place for hundreds of years. I don't know that I'd say the church should demand it for all, but personally I find a lot of devotional value in it.
6. Like Chrissy, I am almost always running late. DH is more of an early bird though, so I've had to really work hard to overcome that chronic lateness and meet his expectations of at least being on time. The tendency of my family to be running a little late has become a running joke of it's own!
7. While I can be a perfectionist about some things, I'm also work best in a state of organized chaos. My house may look like the clutter is just a big jumbled mess, but I almost always know exactly where things are. When they get lost is when I clean and put them away!
8. Some of the holidays I can take or leave, but I looooove Christmas time! Last year Fidget was only able to participate in opening presents for a short time before he needed to retreat to his sensory safe place, which we affectionately call Fidget's World, so I have to adjust my Christmas morning expectations a bit to meet him where he is, but I really do love the whole season. All the decorations in the stores, songs on the radio, lights on houses, special treats....I just love it all! So many people are going gaga over pumpkin everything in the fall, but I'm just biding time until all the pepperminty things come out.
9. DH and I both like to cook, but despite working a full day DH often comes home and fixes dinner. He's pretty much always got the option, but most days he would rather cook than wrangle kiddos. We're both having to change some of our techniques at the moment though, to allow for Fidget's dietary restrictions.
10. Our cat loves to sleep in my wheelchair at night. Once I've put Sunshine and Fidget to bed, she will often start meowing at me to go to bed as well because she wants my chair! She's always been very protective of Fidget though. When I was pregnant with him she would come lay curled up around my belly (even when I wasn't showing much), and if he is crying she will come and start meow-crying at me to make sure I go attend to whatever is bothering him. And thankfully, as evidenced by the cat-buttering reference I made earlier, she's always been very patient with him and tolerates a lot before she starts batting him away.
And a bonus random fact: I frequently get confused over which is the proper American spelling: gray? grey? I always forget. At the moment I'm pretty sure it's with the "A", but mainly because Sunshine corrected it when I wrote it on the while board. Oops, teacher mama fail!
So there you go! Have a great rest of the week everyone!
Adventures of a Catholic stay-at-home wife and homeschooling mom living with paralysis
Wednesday, September 10, 2014
Thursday, August 21, 2014
Whirlwind Wednesday 8/20: Fidget updates
I'm finding that Wednesdays are one of my favorite weekdays. I know this sounds crazy, but it's because it is the only day of the week that we have NO morning therapy! It's nice to have at least one day that we can be a bit leisurely with getting the three of us fed and dressed in the morning. It's probably one of my least productive days since I'm having to keep a close eye on Fidget, but that's a small price to pay!
I can't complain, though; we're blessed to have all of Fidget's therapy set up in home, we're fortunate that our insurance policy is written through a state which has mandated autism coverage, and we're thankful that he's making such excellent progress. Every other week we have a meeting with his therapists, case manager, and once a month his clinical supervisor to go over all of their data tracking, see what skills he is mastering, what he's having trouble with, what new goals we can set, etc. This was a meeting week, and as always it's so helpful to have their experience for me to bounce questions off of, hear their opinions of what they're seeing, etc. In most areas he still has a long way to go to catch up to his same-age peers, but to know that they're seeing such great results really affirms that we did the right thing by pushing for early evaluation.
Getting the ear tubes in and improving his hearing was big part of the equation, but what has surprised me has been the effect of dietary changes. On the advice of Dr. C, we started by eliminating casein (a protein found in dairy products) based on some of his physical symptoms - constant runny nose, frequent loose poop, keratosis bumps on his arms and thighs, and Dr. C said she even noticed slight dark circles under his eyes. In the process of removing the casein we found that most products that were casein free were also gluten free, and since we knew that was also a possible recommendation we decided to go ahead and make his diet gluten free as well. We've played around with it for a couple of months now, and I can now say with a fair amount of certainty what each of those food types does to him. The casein ramps up his aggression, tantruming, and self injurious behaviors; I wouldn't be surprised if some of that is an emotional manifestation of the digestive distress the dairy causes him. The gluten, on the other hand, is practically his toddler crack: it makes him quite hyper and overactive to the point that he can't stop himself even if he wants to. And when he's in these gluten highs, he is so overwhelmed with the need to bounce off of everything in sight that it is harder to break into his head and communicate with him. I'm sure he hears us, but it's like he can't make himself respond because he has to move, has to touch, has to mouth things. Now without the gluten he's certainly still a 2yo boy with lots of energy, but he is at least able to control himself and interacts & communicates with us much more easily.
One thing we are struggling with is his insistence on sameness with regards to meal time. If he has a different type of plate, or different food to eat, etc. it causes him to melt down to the point of flinging dishes and food if he is able. It happens at home, but is especially bad when we are in a restaurant. One recent restaurant attempt resulted in us having to box up his and Papa Bear's meals; P.B. had to take Fidget out to the car while Sunshine and I ate because Fidget was trying to throw pieces of bean burrito. Thankfully though they've said we can arrange for therapy outings where a therapist will come out with us, because right now it's to the point that we're avoiding eating out. We've got a trip to Disney World planned for the spring, though, so we really need to work through this by then.
Most other things are going well, though; even some early potty training! They've said it's a potential that in maybe 6-12 months he might be ready to spend some time in a regular preschool class with a therapist shadowing him, so I'm going to start putting out feelers this fall as to who might be open to such an arrangement. Part of me is hopeful that eventually we'll be able to bring him into our homeschool, but I've seen how much he learns by imitation, so I'll support his need to be around other "neurotypical" children as long as it seems beneficial. As I've said before, we love homeschooling Sunshine but we're not firmly tied to any one educational setting; for us it's all about what is best for each child at that particular time.
Papa Bear's vacation got cancelled due to a project starting, so over the weekend he got the kids' bunk beds built! I was wanting them done before our school year started anyway, but as Fidget kept ripping the mesh panels on more than one bed tent, the need for them became rather critical. Everyone who has seen the pictures has been raving over it; it still needs to have a finish put on but otherwise I am so pleased with the finished product. They're so cool they really deserve their own post, so more about them soon!
Otherwise we're just winding up our last few days of summer. I'm working to get our office prepared as a guest room for a friend & family who are staying from out of state at the end of the month, as well as getting all of our ducks in a row for starting our new homeschool year. All we need to do is replenish our school supplies and order a few supplemental materials, so hopefully I'll have things physically straight enough that we can start on Monday!
I can't complain, though; we're blessed to have all of Fidget's therapy set up in home, we're fortunate that our insurance policy is written through a state which has mandated autism coverage, and we're thankful that he's making such excellent progress. Every other week we have a meeting with his therapists, case manager, and once a month his clinical supervisor to go over all of their data tracking, see what skills he is mastering, what he's having trouble with, what new goals we can set, etc. This was a meeting week, and as always it's so helpful to have their experience for me to bounce questions off of, hear their opinions of what they're seeing, etc. In most areas he still has a long way to go to catch up to his same-age peers, but to know that they're seeing such great results really affirms that we did the right thing by pushing for early evaluation.
Getting the ear tubes in and improving his hearing was big part of the equation, but what has surprised me has been the effect of dietary changes. On the advice of Dr. C, we started by eliminating casein (a protein found in dairy products) based on some of his physical symptoms - constant runny nose, frequent loose poop, keratosis bumps on his arms and thighs, and Dr. C said she even noticed slight dark circles under his eyes. In the process of removing the casein we found that most products that were casein free were also gluten free, and since we knew that was also a possible recommendation we decided to go ahead and make his diet gluten free as well. We've played around with it for a couple of months now, and I can now say with a fair amount of certainty what each of those food types does to him. The casein ramps up his aggression, tantruming, and self injurious behaviors; I wouldn't be surprised if some of that is an emotional manifestation of the digestive distress the dairy causes him. The gluten, on the other hand, is practically his toddler crack: it makes him quite hyper and overactive to the point that he can't stop himself even if he wants to. And when he's in these gluten highs, he is so overwhelmed with the need to bounce off of everything in sight that it is harder to break into his head and communicate with him. I'm sure he hears us, but it's like he can't make himself respond because he has to move, has to touch, has to mouth things. Now without the gluten he's certainly still a 2yo boy with lots of energy, but he is at least able to control himself and interacts & communicates with us much more easily.
One thing we are struggling with is his insistence on sameness with regards to meal time. If he has a different type of plate, or different food to eat, etc. it causes him to melt down to the point of flinging dishes and food if he is able. It happens at home, but is especially bad when we are in a restaurant. One recent restaurant attempt resulted in us having to box up his and Papa Bear's meals; P.B. had to take Fidget out to the car while Sunshine and I ate because Fidget was trying to throw pieces of bean burrito. Thankfully though they've said we can arrange for therapy outings where a therapist will come out with us, because right now it's to the point that we're avoiding eating out. We've got a trip to Disney World planned for the spring, though, so we really need to work through this by then.
Most other things are going well, though; even some early potty training! They've said it's a potential that in maybe 6-12 months he might be ready to spend some time in a regular preschool class with a therapist shadowing him, so I'm going to start putting out feelers this fall as to who might be open to such an arrangement. Part of me is hopeful that eventually we'll be able to bring him into our homeschool, but I've seen how much he learns by imitation, so I'll support his need to be around other "neurotypical" children as long as it seems beneficial. As I've said before, we love homeschooling Sunshine but we're not firmly tied to any one educational setting; for us it's all about what is best for each child at that particular time.
Papa Bear's vacation got cancelled due to a project starting, so over the weekend he got the kids' bunk beds built! I was wanting them done before our school year started anyway, but as Fidget kept ripping the mesh panels on more than one bed tent, the need for them became rather critical. Everyone who has seen the pictures has been raving over it; it still needs to have a finish put on but otherwise I am so pleased with the finished product. They're so cool they really deserve their own post, so more about them soon!
Otherwise we're just winding up our last few days of summer. I'm working to get our office prepared as a guest room for a friend & family who are staying from out of state at the end of the month, as well as getting all of our ducks in a row for starting our new homeschool year. All we need to do is replenish our school supplies and order a few supplemental materials, so hopefully I'll have things physically straight enough that we can start on Monday!
Wednesday, August 13, 2014
Whirlwind Wednesday, 8/13
Late in the day, yes, but at least it's still Wednesday!!
I want to start tonight with a riddle: what do you get when you add an abscess, a broken air conditioner, 17 hours of therapy, two torn bed tents, and two rooms being reorganized/redecorating??
The answer: Our life the last two weeks!
Just writing that was exhausting, and living it was just as crazy! And since living through it all in such a short time has my brain a bit addled, I'll be recapping in a totally different order than I listed it. Ya know, to make sure we're all on our toes around here. (Speaking of "on our toes" does anyone have suggestions for breaking an autistic child of toe walking? Just curious if it is something he will outgrow, or if we should be more proactive.)
We're in the process of cleaning out both the kids' room and our office right now. In many ways I'm nuts for attempting this, but part of the project involved moving a shelving unit from the kids' closet to our office closet to provide better storage for Papa Bear's tools. And we're getting ready for overnight, out of state guests at the end of the month, AND getting ready for the new school year, which will include moving most of our school time to the office to accommodate Fidget's ABA therapy, AND we've got to find a way to keep the little man in bed, sooo....two rooms at once it is. Sunshine, God bless her, is doing her best on their room, but in typical six year old fashion she gets distracted and starts playing, plus when it's totally disheveled it's like she can only see the forest and not the trees, and can't figure out where or how to start. (We have this problem when she's sent to look for something around the house too.) But she is making some progress, and is sorting things out to get rid of, pack up, and keep, so hopefully she'll be ready when we move to the next phase of their room next week. Papa Bear is taking a week of stay-cation, and should be building the kids new bunk beds!
I'm so excited about this for mulitple reasons. For starters, the room is certainly crowded with two twin beds in there, so going up will open a lot of floor space again. We're also going to re-configure their closet to allow for more storage space, which is much needed. And very importantly, it will allow for a sturdier way to keep Fidget in bed! He now has ripped multiple holes in the mesh sides of his twin bed tent, and also one in the travel bed. And sadly, I'm not sure how I'm going to repair one of the holes in the twin bed tent; in fact, it's a wonder Papa Bear was even able to blockade that end so that he can't get out. When we build the bunk beds we will enclose the bottom to keep him secure, and hopefully this will prove more durable. I look forward to a day when guaranteed containment isn't such a concern, but right now it is a big safety issue. Even with furniture secured to the wall, I worry that he will climb and fall from a tall piece of furniture. Because we don't have the space for me to empty the room, I worry that his pica will result in his consumption of small toys: legos, little Barbie accessories, etc. And he's starting to open doors, so the thought of him eloping from the house overnight is quite frightening. So for now I need to know that once he's in bed he will stay there. This is def. one advantage to having Fidget and Sunshine share a room; should he get out of bed she can alert us, and if there were an emergency she can get him out and help him to safety.
In the office, I'm purging a lot of stuff as the room has turned into a bit of a dumping ground. I'm reorganizing the closet to make better storage for Papa Bear's tools, which have become quite scattered and disheveled. I'm clearing out book shelf space to make room for Sunshine's chapter books, so that she can access them while Fidget is napping, and also will be setting her up an art station and hopefully a fold out desk space. (I'm also toying with hanging a white board for myself.) And I'll be clearing space where we can set up an air mattress or something so my friend and her husband can sleep in here when they come to visit. Oh, and I've GOT to catch up on my paperwork from the last school year before we start the new one!
I had first started on the office a week and a half ago, but then was sidelined for five days by a staph abscess. One of the worst things was the location - on the inside of my left bicep. Being a paraplegic this basically took all of my mobility away: I couldn't push my chair, transfers were excruciating, even rolling or sitting up in bed was painful. It took multiple visits to the walk in clinic and then ER to get it all cleaned out, and it will take awhile for the incision to fully heal, but thankfully I'm back to my normal productive self.
Unfortunately, when I finally got back to work on the office this past Sunday I shortly discovered that our air conditioner was not working! Had to replace a couple parts on the outside unit, completely recharge the system with Freon, and replace the thermostat. The bill wasn't pretty, and will result pushing our plans to build Fidget a dedicated therapy room back to the spring, but I'm so glad to have it back up and running. I'm also thankful that because this is hurricane country, we had three window units stored that we could put up to keep the house cool until the central air was fixed. And since we had to replace the thermostat anyway, I talked Papa Bear into upgrading to a WiFi thermostat. The thermostat is mounted at a level which is difficult for me to read, plus walking over to it is not always a simple task, so it is a wonderful convenience to be able to adjust the temperature right from my iPad!
We still have a week or two until I start our school year, but I think by now all the school districts around us have begun. Therefore, we started our fall schedule for Fidget's therapy and Sunshine's gymnastics this week. Her gym is the exact same class as last school year: a discounted homeschool class one afternoon per week. For Fidget, his regular calendar has him with 15 hours of ABA therapy spread over four days, and two afternoons of early intervention therapy (one each ST and OT). As sad as it is to see another summer slipping away, it's nice that we have a couple weeks to settle into our routine of these activities before starting our homeschool year. Then her CCD and parish children's choir will start in September. This school year I'm letting her do her catechism in class instead of at home with me, though I will be supplementing at home for sure since this is a sacramental year for her. She'll make her first Reconciliation right after her birthday, then her first Eucharist in the spring. I can't wait to watch her move on to this next, more involved point on her journey as a faithful Catholic Christian!
There's been a lot going on the last couple of weeks, but I suppose I better buckle up and get ready for a wild ride, as it's only going to get crazier!
I want to start tonight with a riddle: what do you get when you add an abscess, a broken air conditioner, 17 hours of therapy, two torn bed tents, and two rooms being reorganized/redecorating??
The answer: Our life the last two weeks!
Just writing that was exhausting, and living it was just as crazy! And since living through it all in such a short time has my brain a bit addled, I'll be recapping in a totally different order than I listed it. Ya know, to make sure we're all on our toes around here. (Speaking of "on our toes" does anyone have suggestions for breaking an autistic child of toe walking? Just curious if it is something he will outgrow, or if we should be more proactive.)
We're in the process of cleaning out both the kids' room and our office right now. In many ways I'm nuts for attempting this, but part of the project involved moving a shelving unit from the kids' closet to our office closet to provide better storage for Papa Bear's tools. And we're getting ready for overnight, out of state guests at the end of the month, AND getting ready for the new school year, which will include moving most of our school time to the office to accommodate Fidget's ABA therapy, AND we've got to find a way to keep the little man in bed, sooo....two rooms at once it is. Sunshine, God bless her, is doing her best on their room, but in typical six year old fashion she gets distracted and starts playing, plus when it's totally disheveled it's like she can only see the forest and not the trees, and can't figure out where or how to start. (We have this problem when she's sent to look for something around the house too.) But she is making some progress, and is sorting things out to get rid of, pack up, and keep, so hopefully she'll be ready when we move to the next phase of their room next week. Papa Bear is taking a week of stay-cation, and should be building the kids new bunk beds!
I'm so excited about this for mulitple reasons. For starters, the room is certainly crowded with two twin beds in there, so going up will open a lot of floor space again. We're also going to re-configure their closet to allow for more storage space, which is much needed. And very importantly, it will allow for a sturdier way to keep Fidget in bed! He now has ripped multiple holes in the mesh sides of his twin bed tent, and also one in the travel bed. And sadly, I'm not sure how I'm going to repair one of the holes in the twin bed tent; in fact, it's a wonder Papa Bear was even able to blockade that end so that he can't get out. When we build the bunk beds we will enclose the bottom to keep him secure, and hopefully this will prove more durable. I look forward to a day when guaranteed containment isn't such a concern, but right now it is a big safety issue. Even with furniture secured to the wall, I worry that he will climb and fall from a tall piece of furniture. Because we don't have the space for me to empty the room, I worry that his pica will result in his consumption of small toys: legos, little Barbie accessories, etc. And he's starting to open doors, so the thought of him eloping from the house overnight is quite frightening. So for now I need to know that once he's in bed he will stay there. This is def. one advantage to having Fidget and Sunshine share a room; should he get out of bed she can alert us, and if there were an emergency she can get him out and help him to safety.
In the office, I'm purging a lot of stuff as the room has turned into a bit of a dumping ground. I'm reorganizing the closet to make better storage for Papa Bear's tools, which have become quite scattered and disheveled. I'm clearing out book shelf space to make room for Sunshine's chapter books, so that she can access them while Fidget is napping, and also will be setting her up an art station and hopefully a fold out desk space. (I'm also toying with hanging a white board for myself.) And I'll be clearing space where we can set up an air mattress or something so my friend and her husband can sleep in here when they come to visit. Oh, and I've GOT to catch up on my paperwork from the last school year before we start the new one!
I had first started on the office a week and a half ago, but then was sidelined for five days by a staph abscess. One of the worst things was the location - on the inside of my left bicep. Being a paraplegic this basically took all of my mobility away: I couldn't push my chair, transfers were excruciating, even rolling or sitting up in bed was painful. It took multiple visits to the walk in clinic and then ER to get it all cleaned out, and it will take awhile for the incision to fully heal, but thankfully I'm back to my normal productive self.
Unfortunately, when I finally got back to work on the office this past Sunday I shortly discovered that our air conditioner was not working! Had to replace a couple parts on the outside unit, completely recharge the system with Freon, and replace the thermostat. The bill wasn't pretty, and will result pushing our plans to build Fidget a dedicated therapy room back to the spring, but I'm so glad to have it back up and running. I'm also thankful that because this is hurricane country, we had three window units stored that we could put up to keep the house cool until the central air was fixed. And since we had to replace the thermostat anyway, I talked Papa Bear into upgrading to a WiFi thermostat. The thermostat is mounted at a level which is difficult for me to read, plus walking over to it is not always a simple task, so it is a wonderful convenience to be able to adjust the temperature right from my iPad!
We still have a week or two until I start our school year, but I think by now all the school districts around us have begun. Therefore, we started our fall schedule for Fidget's therapy and Sunshine's gymnastics this week. Her gym is the exact same class as last school year: a discounted homeschool class one afternoon per week. For Fidget, his regular calendar has him with 15 hours of ABA therapy spread over four days, and two afternoons of early intervention therapy (one each ST and OT). As sad as it is to see another summer slipping away, it's nice that we have a couple weeks to settle into our routine of these activities before starting our homeschool year. Then her CCD and parish children's choir will start in September. This school year I'm letting her do her catechism in class instead of at home with me, though I will be supplementing at home for sure since this is a sacramental year for her. She'll make her first Reconciliation right after her birthday, then her first Eucharist in the spring. I can't wait to watch her move on to this next, more involved point on her journey as a faithful Catholic Christian!
There's been a lot going on the last couple of weeks, but I suppose I better buckle up and get ready for a wild ride, as it's only going to get crazier!
Sunday, July 27, 2014
Answer Me This: July 27 (and Shaking Out the Crickets)
I know, I know, my keys have been ridiculously silent most of this month. There has been sooo much going on around our house, and I just haven't taken the time for myself to find quiet(ish) moments in the office for writing. Most of my browing is done on my iPad Mini, but I don't find the touch keyboard, or even my bluetooth keyboard, comfortable enough for my poor hands to do an extensive amount of typing. (More on those hands in another post.)
The biggest changes are that Fidget has finally started both OT and ABA therapy this month! Our OT is through our state's early intervention program, so he is approved for an hour a week in-home at no cost to us. (Thank you, taxpayers!) However, we had a substantial amount of time pass between when he was approved to add OT to his existing services - initially we started with just speech while we were waiting for his diagnosis - so the past two weeks she has come for both our regular weekly session and a make-up session. She had good things to say about some of the things we are already doing for him, and has lots of helpful advice for other things we can implement. She made the comment that he may be the most sensory-seeking child she has ever worked with, which is a bit mind boggling if I imagine how many kids she's likely worked with, but at the same time it's very affirming that my perception of the extremes of his behavior were not inflated...he really is this intense! When we've met new therapists of any discipline, my best way of describing him can be summed up in one word: more. More movement, more light, more sound, more touch, more flavor, more texture, etc. We've always done as much with and for him as we can, but at least I feel understood in being overwhelmed trying to meet his insatiable need for input.
On the ABA front, his current permanent schedule only has him with 7 hours per week, but they are constantly calling to offer us more hours when they have availability, and we accept those hours as much as possible. A couple weeks ago he had I think 21 hours of ABA; the goal is to work him up to about 35 hours per week. When we reach that full schedule, it will mean therapy twice a day, six days a week! It's overwhelming to think of him working so hard, but I know that all the current research shows that the more intense the therapy at this age, the better the long-term results. And we're already seeing noticeable improvement just over the last four weeks, so it gives me a lot of hope that we're on the right track. And in all of his therapies it is very play based, so to him it's like his therapy team means a constant stream of grown-up friends coming to play just with him! We're having almost all of his sessions in home for now, but hopefully in time we can add more time at the center so that he can get some group therapy as well. It's rather bittersweet to know that his fall he would have been eligible to start at the preschool in our church parish, which Sunshine attended for three years, but I know it's not the right fit for him, and the biggest factor in all of our educational decisions thus far has been what is the best choice for THIS child at THIS time. I can't say what either of them will need in the future, but I am confident that in this moment we are giving them each what they need.
And speaking of Sunshine, she had her first trip to resident camp this month! It was nice, our camp offers a half week session for the youngest girls, so she and a friend from her Daisy troop went for three days, two nights. Came home missing a few possessions, but nothing that can't be replaced; and she came home with lots of great memories. She's already asking about going for a full week next summer!
More on what we've been up to later; for tonight I will leave you with this week's installment of Answer Me This, sponsored by catholicallyear.com!
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The biggest changes are that Fidget has finally started both OT and ABA therapy this month! Our OT is through our state's early intervention program, so he is approved for an hour a week in-home at no cost to us. (Thank you, taxpayers!) However, we had a substantial amount of time pass between when he was approved to add OT to his existing services - initially we started with just speech while we were waiting for his diagnosis - so the past two weeks she has come for both our regular weekly session and a make-up session. She had good things to say about some of the things we are already doing for him, and has lots of helpful advice for other things we can implement. She made the comment that he may be the most sensory-seeking child she has ever worked with, which is a bit mind boggling if I imagine how many kids she's likely worked with, but at the same time it's very affirming that my perception of the extremes of his behavior were not inflated...he really is this intense! When we've met new therapists of any discipline, my best way of describing him can be summed up in one word: more. More movement, more light, more sound, more touch, more flavor, more texture, etc. We've always done as much with and for him as we can, but at least I feel understood in being overwhelmed trying to meet his insatiable need for input.
On the ABA front, his current permanent schedule only has him with 7 hours per week, but they are constantly calling to offer us more hours when they have availability, and we accept those hours as much as possible. A couple weeks ago he had I think 21 hours of ABA; the goal is to work him up to about 35 hours per week. When we reach that full schedule, it will mean therapy twice a day, six days a week! It's overwhelming to think of him working so hard, but I know that all the current research shows that the more intense the therapy at this age, the better the long-term results. And we're already seeing noticeable improvement just over the last four weeks, so it gives me a lot of hope that we're on the right track. And in all of his therapies it is very play based, so to him it's like his therapy team means a constant stream of grown-up friends coming to play just with him! We're having almost all of his sessions in home for now, but hopefully in time we can add more time at the center so that he can get some group therapy as well. It's rather bittersweet to know that his fall he would have been eligible to start at the preschool in our church parish, which Sunshine attended for three years, but I know it's not the right fit for him, and the biggest factor in all of our educational decisions thus far has been what is the best choice for THIS child at THIS time. I can't say what either of them will need in the future, but I am confident that in this moment we are giving them each what they need.
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| Our adventurer |
More on what we've been up to later; for tonight I will leave you with this week's installment of Answer Me This, sponsored by catholicallyear.com!
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1. What’s your favorite thing on YouTube?
It's sad, of the time I spend on YouTube, very little of it is watching things for myself! That doesn't mean I don't find it beneficial though! Over the years we've been able to pull up favorite shows for the kids during difficult moments. Sunshine and I pray our weekly rosary along with YouTube videos. And lately, she and I have been watching a lot of Rainbow Loom tutorials.
2. Who taught you to drive?
Believe it or not, but Papa Bear mostly did! I took driver's ed in high school, but the instructor I had was rather harsh and actually gave me a lot of anxiety about being behind the wheel. Then I attended college out of state, and had free access to an excellent public transit system, so the whole time I lived in Pittsburgh I never had a license. I finally got my license when I was 23, several months after moving back home. My parents took me out some, but it was mostly Papa Bear who helped me feel comfortable about driving. And lucky me, I need to basically do driver's ed again, to work with a therapist to "officially" learn how to use my hand controls and get my license back. Ya know, in my spare time....
3. What’s your favorite thing to cook?
I'd have to say my mom's recipe for skillet lasagna. It's practically how I won Papa Bear over! Before I got my license, he would pick me up from nursing school once a week, and many weeks he would already have stopped and picked up all of my ingredients on his way to get me. And it makes a large quantity, so it's great for having leftovers. I'll have to revamp it a bit to make it friendly for Fidget's GFCF diet (more on that soon too), but it's def. got a special place in our relationship.
Recipe:
Brown one pound of ground meat of choice with one diced onion and some minced garlic, drain and return to pan. Add two jars spaghetti sauce (any flavor, I find the chunky sauces work nicely) and stir, once it starts bubbling stir in one bag UNCOOKED medium egg noodles. Reduce heat to simmer, cover and cook approx 20 minutes, stirring occasionally.
Meanwhile, add parmesan cheese, basil, and oregano to one large container small curd cottage cheese. When noodles are just slightly underdone, stir in half of cheese mixture. Spread remaining cheese mixture over the top, recover and cook approx 5 more minutes or until cheese begins to melt. Serve with garlic bread and salad.
**My apologies that I've made it so many times that I don't know exact measurements or times anymore. I just cook by sight and flavor!
4. Are you a hugger or a non-hugger? Why?
This is the south, I am def. a hugger! In all seriousness though, I think physical touch is so important for our stress and mental health. Magazines may write constant articles on a couple's intimate relations, but I think little things like hugging and holding hands are even more important. And a hug can say so many things to so many different people in our lives: parents, siblings, spouses, children, friends, etc. Great meaning can be conveyed without uttering a single word.
5. Where do you pray best?
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| The view from my side porch toward the front yard. |
Here at home, I like to pray outdoors. We have a small side porch off our master bedroom (emergency egress for me in my chair in case of fire) that is shaded by a tree, and with the house next to us on that side vacant for almost the whole time we've lived here, it is typically very quiet and peaceful. I may have to find a new happy place once they finish renovating it and a new family moves in! And while the opportunity doesn't present itself often, I love to pray in Eucharistic Adoration.
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| My paternal grandparents |
6. When is the last time you saw/spoke to your grandparents?
Hmm, let's see.... Unfortunately, I never knew either of my mom's parents; her dad died before I was even expected, and her mom died when I was just a newborn. My Grandpap (Dad's dad) died in March 1992, about a month before I turned 12, so I hadn't seen or spoken to him since the summer before. My Grandma passed when I was 19, on Dec 23, 1999; I had just seen her at Thanksgiving and don't recall if I talked to her in between or not. For many years Papa Bear's maternal grandmother - the only surviving grandparent for either of us - was my surrogate grandma, she loved all of us who married in as if we were her own. She passed in September 2011, while I was pregnant with Fidget.
Friday, July 4, 2014
Joy and Happiness Part 2: Finding good in the bad
Welcome to the second installment in a series of posts about happiness. The first installment can be found here.
This isn't exactly the post I had planned, but the status I posted to my personal Facebook page this evening lead me in this direction. Shortly after dinner, I wrote the following summary of my day:
When Papa Bear finally made it home from work, and I began recounting our day, I realized that I had become my own worst enemy. I was allowing all those frustrations to overpower and make me forget all the good things that happened today. So before coming here, I made another FB post:
Having battled depression off and on for the last 10-12 years, I know that it's not always easy to find the good in the bad. It is much easier to let ourselves fall into mental despair, and the further into the Pit of Despair we allow ourselves to fall, the harder it is to find our way out. Yet my history of depression has also taught me just how important finding the good is for my well being. Perspective is such a valuable gift, and it is one which we can give ourselves.
Because where does all that pouting get me? Nowhere. I still have all the same challenges as before, but now I've put myself in a bad mood and wasted time and energy that could be put to much better use actually dealing with my obstacles rather than whining about them. Just as I said in the last post that fear is not a good place from which to make choices, neither is frustration or sorrow. It's not easy, but coming to a point of acceptance is crucial in changing our perspective from despair to joy. Our problems aren't going to disappear on their own; we have to accept them for what they are so we can begin the hard, messy work of either solving them or learning how to live with them. In time we discover how to find the happy bits in the midst of all the turmoil; and eventually to push the turmoil into the shadows and realize that we have more than just happy bits - our lives are full of happiness.
I could get angry about the food from the freezer we had to get rid of tonight. But I know it wasn't intentionally left open, and there was a lot of food we were able to save. Also, food in the freezer means we had the money to put it there. And hey, it's even trash night, so I don't have to worry about spoiled food stinking up my trash can for days. Those are all things to be grateful for - with the right perspective.
I could pout that Papa Bear has been working so much, that we haven't had much time for each other lately, and that I'm having to pick up some of his duties around the house. But at least he has a stable job, he is a hardworking man who gets up every day to provide for his family, and the overtime has helped us meet some unanticipated expenses. I've been blessed with such a great husband; he is a tremendous source of strength in the places where I am weak. Part of my job as his wife is to show him how much I appreciate him, so how can I do that if I'm busy complaining? The answer: it can't be done. I have to let go of the frustrations - and change perspective - in order to acknowledge and thank him for his efforts.
In many ways, happiness can be a choice. Everyone has struggles and bad days; there's no way to completely eradicate sadness from our lives, but we can choose how we let it affect us. Negative thought is such a self-fulfilling prophecy. If you're looking for nothing but the bad, then the bad is all you'll find. But fortunately positive thought can work the same way. If you remember that there's good out there somewhere, and make the effort to find it, pretty soon you'll be finding it everywhere.
This isn't exactly the post I had planned, but the status I posted to my personal Facebook page this evening lead me in this direction. Shortly after dinner, I wrote the following summary of my day:
Lets see: Fidget's puppy lovey is missing in the house, Sunshine accidentally thawed the whole contents of the deep freeze, the kids jointly put a small crack in my iPad screen (which may have voided the warranty), and Papa Bear is on his 3rd job of the day with no clue when he will be home. This is one day I will be happy not to repeat!
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| I *think* maybe I found a replacement lovey on ebay?? |
To say it's been a difficult day is an understatement. Fidget's had a number of big meltdowns, Sunshine fussed about needing to do some school work (we still need about 15 more school days before I call the end of our year), and little interruptions kept preventing me from meeting some of my goals for the day. By the time I posted those thoughts, I had fed us all dinner, and was now cooking a roast in the crock pot, browning some ground turkey, and sauteing some crab meat and crawfish tails. Both kids were still bouncing around like it was the middle of the day, and I was aggravated and tired.
When Papa Bear finally made it home from work, and I began recounting our day, I realized that I had become my own worst enemy. I was allowing all those frustrations to overpower and make me forget all the good things that happened today. So before coming here, I made another FB post:
I hate to go to bed with a negative attitude, so here are some happier thoughts to end my day:- Papa Bear working late means that he has a steady job, and all of the OT he's worked recently has helped pay for a lot of Fidget's treatment expenses without dipping into savings.- The freezer was not very full when it got left open, and I was able to salvage most of the contents. All of the uncooked meat is now either cooked or marinated, so as a bonus I've got a lot of my meals for the next week already done!- Fidget did a great job with his first working ABA session. We identified some problem areas to monitor or add to his behavioral plan, but there were also areas he did better than expected. And he pooped on the potty twice today! In a couple months the ABA team will throw him a "potty party" for intense potty training, for now we're just offering it as he asks. Thankfully, he went down at both nap and bedtime without a meltdown over his missing lovey. He was definitely asking for it, but since he has his bear blanket he was willing to settle for that. - Everyone in my family is going to sleep tonight in a comfortable bed with a full tummy. Regardless of what frustrations I dealt with today, that simple fact alone makes us extremely blessed.I could have easily gone to bed in a foul mood, and probably woken up the same way in the morning. But by writing that second post, I made myself focus on all the positive parts of the day. Now I can go to bed with happy thoughts, and wake in a good mood ready to celebrate the holiday.
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| The Pit of Despair |
Because where does all that pouting get me? Nowhere. I still have all the same challenges as before, but now I've put myself in a bad mood and wasted time and energy that could be put to much better use actually dealing with my obstacles rather than whining about them. Just as I said in the last post that fear is not a good place from which to make choices, neither is frustration or sorrow. It's not easy, but coming to a point of acceptance is crucial in changing our perspective from despair to joy. Our problems aren't going to disappear on their own; we have to accept them for what they are so we can begin the hard, messy work of either solving them or learning how to live with them. In time we discover how to find the happy bits in the midst of all the turmoil; and eventually to push the turmoil into the shadows and realize that we have more than just happy bits - our lives are full of happiness.
I could get angry about the food from the freezer we had to get rid of tonight. But I know it wasn't intentionally left open, and there was a lot of food we were able to save. Also, food in the freezer means we had the money to put it there. And hey, it's even trash night, so I don't have to worry about spoiled food stinking up my trash can for days. Those are all things to be grateful for - with the right perspective.
I could pout that Papa Bear has been working so much, that we haven't had much time for each other lately, and that I'm having to pick up some of his duties around the house. But at least he has a stable job, he is a hardworking man who gets up every day to provide for his family, and the overtime has helped us meet some unanticipated expenses. I've been blessed with such a great husband; he is a tremendous source of strength in the places where I am weak. Part of my job as his wife is to show him how much I appreciate him, so how can I do that if I'm busy complaining? The answer: it can't be done. I have to let go of the frustrations - and change perspective - in order to acknowledge and thank him for his efforts.
In many ways, happiness can be a choice. Everyone has struggles and bad days; there's no way to completely eradicate sadness from our lives, but we can choose how we let it affect us. Negative thought is such a self-fulfilling prophecy. If you're looking for nothing but the bad, then the bad is all you'll find. But fortunately positive thought can work the same way. If you remember that there's good out there somewhere, and make the effort to find it, pretty soon you'll be finding it everywhere.
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