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!

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!