7 Quick Takes Monday (?) of Breaking the Plague of Silence

Yes, yes, I know....I once again allowed the crickets to overcome my blog. I mean for Pete's sake, I haven't written in a month! 7QT has relocated since then! Thankfully it has not been a plague of biblical proportions, and we're all surviving over here, we've just had a lot of things going on. So in honor of the hosting duties moving to Kelly @ This Ain't The Lyceum, I figured this was a good time to jump back in...even if it is a Monday. So I'll do my best to summarize the last month of our life in seven theoretically quick takes (have to be pretty quick, since I need to finish before Sunshine comes home from gymnastics!), and expand upon parts of them at a later time.

---1---

Sunshine had a really good birthday. She got one gift from us, but a big one. I took one corner of my office/our school room and turned it into what we're calling her "creation station". This will most definitely be getting a post of it's own! She loves doing crafty stuff, but lacked good space for both creating and storing in such a way that her materials and projects would be safe from the wrath of Fidget. So I decided to repurpose a lot of materials, attempting to focus my budget on getting her some more grown-up, quality supplies, and give her a space in which to express herself. She's been absolutely in love, and declared it the best present ever. More pics will come later, but here's a teaser of my artist at work.

---2---

A couple weeks after her actual birthday we had her party here at home. She chose a Lego Friends theme, and I made my first attempt at decorating with (marshmallow) fondant! Not professional quality, but I don't think anyone will post it on cake wrecks, so I'll call it a success! The kids played in the yard, we had a mega block relay race and a pin the stud on the Lego brick game, and of course time for the kids to just play in her big bin of Legos. And she got lots of craft kits to add to the creation station, which made her very happy. She also got a Lego Friends advent calendar which she is very much enjoying.

---3---

The day before her party, the four of us went out to a nearby state park for a family Thanksgiving celebration with her Girl Scout troop. It was great to see them putting their newly acquired fire building and camp cooking skills to use! We weren't sure how Fidget would do with so much open space to run, and us occasionally being busy and not able to attend to him closely, so we arranged for one of his ABA therapists to come with us as a community outing. He did better than I expected, and it was good social skill practice for him.

---4---

Our personal Thanksgiving had a strange vibe to it this year, with my Dad gone, but we had a good time celebrating at my sister's house. For once we didn't try to see both families, and I got to enjoy the entire Macy's parade which I haven't done in awhile. I also made some new recipes to meet Fidget's GFCF diet, which came out really good! A cinnamon no-roll, which was almost more cake like, for breakfast; spinach mushroom quinoa; and an apple cranberry pie. I also made some rolls with my favorite GF baking mix.

---5---

Sunshine and I have been doing a lot more with her DIY membership. She has earned her Maker skill badge, and has many more in progress. One of the things that we have done is to finally start her Etsy store! She's been planning this since late spring, and spent the summer and fall building up her inventory. She is selling Rainbow Loom accessories for American Girl dolls! She's had lots of views and a few things added as favorites, but no sales yet. I'm hoping she will get at least a couple before Christmas, as to not squash her little entrepreneurial spirit.

---6---

Shortly after Thanksgiving, Papa Bear had to go to Florida for about a week for work. This was his first trip out of town since Fidget's diagnosis, and I could definitely tell the difference all his therapy has made. Before, although I'm sure he noticed, he never expressed any awareness at his father's absence, but this time we had a great many circular conversations about "Daddy go bye-bye. Daddy go work. Daddy go white truck. Daddy come back?" "Yes, Daddy is at work, very far away. He will come back, but not tonight." "Not back night. Daddy go work. Daddy go white truck. Daddy come back." That made it even cuter though to see his excitement to talk to Papa Bear on FaceTime in the evenings.

---7---

We had been prepared for Papa Bear to be gone even longer, so we decided that we would forgo our annual trip to the Christmas tree farm and go with an artificial tree. I got it put together while Sunshine was at gymnastics last week, then she and I decorated it. She was quite miffed about the break in tradition at first, and I think doubted my ability to make it actually look like a real tree, but even she conceded that it was easier to decorate, since we could make holes where we needed them, and didn't have to worry about "pokey, scratchy needles." And I think not a bad decorating job, for a 7yo and a Mom on Wheels :-)

In other advent preparations, we've got our advent wreath up, and are doing our Jesse Tree using the ornaments Sunshine made last year (printables she colored, and then we glued on to cardboard from soft drink boxes to make stronger). And of course, our nativity went up before anything. It will also be the absolute last thing we take down. My sister gave us a Fontanini 5" set as our wedding gift, and it's been one of the most used things we received. We've also added a few pieces over the years. We don't do the travelling Holy Family or Wise Men, but we do have the manger empty, and baby Jesus waiting up in the loft. On Christmas morning we will sing Happy Birthday and put him in before opening any of our gifts.

We have an elf in our family, though not the typical Elf on the Shelf. I've never been fond of the fact that the EotS is supposed to be there practically as a spy for Santa, as well as the restriction on the kids touching them. Our elf Hazel is an Elf Magic elf, and her story specifically mentions that she is here to spread joy and remind us of the true meaning of Christmas. In our house, Hazel does some of the silly things like EotS, some of the Kindness Elves type things, and some religious things like reading scripture, or playing with the nativity. Last year she even brought the gifts for St Nicholas Day! In order for Hazel to "keep her magic" she has to be set out each night and sprinkled with "magic snowflakes" and needs snacks of ice water and crackers. So if Sunshine doesn't take care of Hazel, we don't have any elfcapades to discover in the morning.

So that pretty well brings us up to now! Tomorrow is a big day, at Fidget's monthly clinic meeting we will be joined by his caseworker from early intervention and a representative from the school district to discuss his transition of services that will occur when he turns three in March. Our current plan is to send him to our parish preschool part-time with a shadow from his ABA provider, but are hoping we can still maintain speech and OT from the school district. Either way it should be quite informative; praying that it is a fruitful meeting as well!

7 Quick Takes: Of the Birthday Girl

Hello all!  This weekend is Sunshine's birthday, so today's quick takes are all dedicated to her!

--- 1 ---

A very brief birth story: we got pregnant with Sunshine almost exactly two years after I became a woman on wheels. Because of my paralysis, I was automatically considered high risk, and saw both my regular OB and maternal-fetal medicine the entire pregnancy. Because of risks that I could go into labor undetected, and an unattended delivery could become a serious emergency, our plan was always an induction at 39 weeks, with immediate epidural to avoid the complication of autonomic dysreflexia. Pretty much from the beginning, she measured small, but was growing steadily. At about 35 1/2 weeks, literally the day after our baby shower, it was discovered on ultrasound that she was now "too small", and MFM recommended moving up delivery day to 37 weeks. Two days later, though, it was discovered that I had large amounts of protein in my urine, and as my blood pressure was also elevated I was admitted straight to the medical obstetric unit due to pre-eclampsia. The doctors took that afternoon and the next day to stabilize my condition and monitor Sunshine, and we induced on Friday morning. We started at 8:30am and Sunshine slid her way into the world - without a single push from me and almost before the doctor was ready - at 2:56pm. She was 4lb 12oz and 18 inches long, so quite tiny for a 36w baby, but perfectly healthy. She roomed in with me, and we only stayed one extra night for some temperature regulation issues she had before bringing our little sack of sugar home.

--- 2 ---

We had just started building our house when we found out I was pregnant. We had hoped to be in the house by the time she was born, but we were doing all the interior work ourselves, and VASTLY underestimated the time involved. The day after we brought her home, we received a certified letter saying that the mobile home park we were living in was shutting down. Since we had the house under construction, we opted to sell the trailer and let them move it, rather than moving it ourselves, and moved in with my sister for eight months. We then stayed in a studio for about 4mo until the house was complete. Our first night sleeping here was Christmas Eve, when she was 13 months old.

--- 3 ---

As a baby and toddler she was the type of kid who made this whole parenting gig look easy. It was clear she had a lot to say from the beginning; I can remember her at 5mo old, sitting with me babbling intensely and energetically, as if telling me a story. Her first word was "mama" at nine months, and she had about half a dozen words by her first birthday. I tried to keep up with her words until she was about 18mo; at that point she started gaining words so fast I couldn't keep up! By her second birthday she was already speaking in 5-6 work sentences! She was very compliant as a 2yo, and never really went through the terrible twos; looking back this was probably an early sign of asynchronous development, which often accompanies giftedness.

--- 4 ---

Most of her defiance and testing limits came from ages 3-5. Over the last year things have really improved, though she still feels emotion very intensely. Not in a bipolar way, just that the peaks of her highs and lows are more extreme than most people. This can be challenging when they are feelings of anger, sadness, fear, or frustration; but it also makes her feelings of joy, happiness, and excitement that much sweeter. Not many turning-seven year olds I know still stop what they're doing and run outside to see an airplane or helicopter fly overhead! She struggles with frustration and perfectionism, but is also very helpful, compassionate, and giving. And I don't think she's ever met a stranger; she manages to find a friend everywhere she goes!

--- 5 ---

By her second birthday she knew all her letters, basic colors, and basic shapes. I started suspecting her giftedness around her third birthday. She had an intense ability to concentrate; she would sit and play with puzzles, little people, or look at books for hours at a time! I vividly recall a conversation around that time, one day after preschool as we were eating a snack of teddy grahams and yogurt. I commented that our snack of "bears" started with the letter B, and she then embarked on an hour long conversation of "what else starts with B?" All her teachers commented how quickly she picked up new information, the complexity of tasks she could handle, even the way she could engage adults in conversations. We considered trying to put her into kindergarten "early", still the fall that she turned five but her birthday came about six weeks after the cutoff. We discovered that our school district doesn't even consider it, so we left her in preschool while we assessed our educational options. We loved the parochial school we visited but it was well out of our budget, and we just had a nagging feeling that while we both did fine in public school, it just didn't seem like the best fit for her. I did some research about home schooling, and brought up the issue to Papa Bear. He was a bit skeptical of how we would do with it, but agreed to let us give it a shot for kindergarten; we surmised that she was so far ahead, even if my attempt to homeschool was an abysmal failure she wouldn't be behind if we put her in school for first grade. We made the decision in late February, and despite still being in preschool, she wanted to start right away! So we started part-time right before Easter of 2013.

--- 6 ---

Here we are about 19 months later, and it has gone much better than any of us thought. She has completed kindergarten, first grade, and we are now working on second grade (at a minimum). We haven't had much opportunity to be active with our local homeschool group, but she's involved in a homeschool gymnastics class, Girl Scouts, our church children's choir, as well as CCD classes to help her maintain the skill of appropriate classroom behavior. She also spends lots of time playing with neighborhood kids of many ages, so she certainly isn't missing out on opportunities for social time!  Her favorite things in school are reading, logic puzzles, science and art projects, and world geography. To help me make sure I incorporate lots of hands-on activities for her, I have signed her up on the DIY website, where she can explore skill building activities in artistic, scientific, and athletic areas.  We also use the Little Passports mail subscription to give us a jumping-off point for our geography exploration, and incorporate reading, art, cooking, and even TV programs. (She loves Bizarre Foods with Andrew Zimmern!)

--- 7 ---

Other Aubrey favorites & fun facts:
Colors - pink and purple, also anything red white & blue;
Foods - aside from the usual kid stuff, she loves salad (I used to pack it in her preschool lunch box!), hummus, and sushi;
Sports - she only does gymnastics, but likes to watch baseball and football with us. Some time in the coming year she wants to try out a team sport, maybe soccer
Books - she is currently working on the Castle Glower series by Jessica Day George
TV shows - Full House, Wild Kratts, Tanked, Treehouse Masters, Bizarre Foods
Activities - Reading, riding her bike, creating art projects, singing
Toys - Lego Friends, American Girl, Barbies
Future aspirations - a mommy, a religious sister (gonna have to pick one way or the other on those two!), a fireman, "someone who teaches people to drive with their hands" (aka an OT who specializes in hand control driver training), a teacher, "a tv person who gets to travel the world"


I couldn't be more proud of the sweet kid she has become. I'm so glad I get to spend my days exploring the world with her, and can't wait to see what paths life takes her on.  Happy birthday, sweet girl!

For more Quick Takes, visit Conversion Diary!

7 Quick Takes: Of Stay-cation & Education, Ghouls & Souls

Better late than never, right? Welcome to

--- 1 ---

Papa Bear has still been on stay-cation this past week. I've tried not to hit him with much on the honey-do list, so that he could recover from the crazy schedule he worked, well, pretty much from mid-spring to now! (Not that there aren't big things I need done, but the man deserves a break!) It's just plain been nice having him around, and having an extra pair of hands to help with the kids. After two weeks of having him at home, I've been spoiled!

--- 2 ---

With Papa Bear around, we were able to move Fidget's bi-weekly ABA clinical meeting to the office instead of in home, which was helpful since this was one of the weeks that his clinical supervisor is also in with us. As usual, everyone is impressed by his progress! We discussed a few problem issues we were experiencing, evaluating what skills he has mastered, and setting updated goals. Since we were at the office with Dr. C, I was also able to ask her about something that had been kicking around in the back of my brain for awhile: the potential that Fidget may be 2e (aka twice exceptional, in this case both autistic and intellectually gifted). I was a gifted child, there are others in my side of the family who are, and Sunshine is presumed to be so. I know it is typically said that siblings fall fairly close to each other in IQ, and that autism and giftedness are not unusual combinations, given that both are just diagnoses where the brain is uniquely wired and the person thinks about things differently than most others. Literally everyone who has worked with Fidget has commented how smart he is, and how quickly he picks up new skills, so that made me curious. Dr. C said it is a bit early to speculate, but is something to be on the lookout for, and that probably in about one more year we could take him in for IQ evaluation. Upon telling this story to our new OT/special instructor from early intervention, who teaches the special ed class at our local elementary, she said she was glad to hear we are planning to homeschool him along with Sunshine because especially if he is indeed 2e then she isn't very confident how well the school system would be able to meet his needs. They would want to put him in either special ed or gifted, and likely wouldn't know how to handle a kid needing both!

--- 3 ---

Speaking of Fidget's educational path, I spoke last week with the director at our parish preschool, which Sunshine attended for three years. The ABA team feels that the best setting for him for the preschool years would be a neurotypical classroom, with a shadow which they can provide. Public schools can be funny about letting in an outside shadow, plus the only class they offer at 3yo would be special ed, so it was suggested we look for a private preschool. The director at our church preschool said they've never had a full time shadow like that, but that they do have speech or occupational therapists from time to time, so she didn't see where it would be a problem. Such a relief! Our hope is to start him next summer part time, mostly to help improve his social skills, and that likely he will be able to learn so much through imitation that by the time he is kindergarten age we can bring him into our home school and just address further social development through extracurriculars such as scouts and sports.

--- 4 ---

The four of us had a fun evening trick-or-treating in my mom's neighborhood on Halloween. Sunshine dressed up as an EMT, we made a fire truck costume for my wheelchair, Papa Bear wore a fire department shirt (he was gong to wear his bunker pants at least, but he was worried about possibly having to run after Fidget). And as for Fidget, he was supposed to be a fireman, but the little stinker refused to wear even a SINGLE piece of his costume! So he just wore jeans and a t-shirt that does at least have a fire truck, police car, and helicopter on it. Oh well, at least it is big enough that he can wear it again next year, and then we'll know to spend some time acclimating to wearing it before Halloween night!

--- 5 ---

Fidget is still trying to adjust to a recent increase in ABA therapy hours, so we kept it pretty low key over the weekend. We caught up on some chores Saturday, and that evening met my cousin and his wife for dinner. They were in from out of town, and it was her birthday, so we were glad to get together. (Their daughter is Evan's Godmother, so we're always excited to see her too!)

--- 6 ---

Sunday of course was All Souls Day in the Catholic Church. I hated that we never made it to mass for All Saints Day, but I woke up with a nasty ear ache, so we missed both mass and the All Souls memorial service for all our parishioners who have passed in the last year. We did at least make it to blessing of the graves, though. It was my first time visiting since Daddy's grave marker was put in place. Bittersweet. The deacon who married us and baptized Fidget came over to bless Daddy's grave. Deacon P is a veteran himself, plus the personal relationship we have with him, so that was extra sweet of him. Such a kind man.

--- 7 ---

Oh, not to be left out, we had a new addition to our family last week!!!  No, not expecting a baby, but rather a four-legged addition! A stray cat wandered into our yard and was lingering around. We made certain no one knew him, then we took him to the vet who confirmed that he is healthy and doesn't have a microchip with owner information. So now Tuxedo Man (aka Tux for short) is all ours! Our other cat, Boots, still isn't keen on him, but I'm sure she will adjust soon.

For more Quick Takes, visit Conversion Diary!

7 Quick Takes: Of a million places to be in one week

I totally did not intend to go an entire week without a blog post, but we have been very on the run this past week! Lots of things to share, so we'll hit the highlights here. No time for pics now, will try to update with photos tomorrow.

 

--- 1 ---

Last Sunday, our parish children's choir was invited to sing for the noon mass downtown at the Cathedral. Sunshine was so excited! Papa Bear sadly was working, so we arranged for his twin brother & wife to keep Fidget (which allowed him to be there for our niece's birthday party) while my mom went downtown with us for mass. We were nearly thwarted in our attempts, as my mom saw a couple of small pieces fall off of my chair as she was putting it together at the church - pieces that hold the backrest on! I didn't have any tools with me, but thankfully a parishioner from an earlier mass happened to see our distress, found the Cathedral maintenance man who had just what I needed, and he came out to my mom's car to fix my chair just in time for mass. Fr. gave a sweet homily to all the children in attendance, and the choir performed well. Then as part of their "Grand Day" celebrations there was a big block party! Petting zoo, pony rides, face painting, balloon animals, live zydeco music, hamburgers/hot dogs/ice cream/drinks, a man dressed as a shepherd, and even Bubbles the Camel made an appearance. We had so much fun; Aubrey spent a lot of her time going around with one of her choir friends, which made me happy to see her building friendships through her extracurricular activities.

--- 2 ---

Monday was surprisingly an even more hectic day! We moved Fidget's morning ABA session from home to the clinic, as I myself had a dr. appointment at the neurologist. It was mostly just a routine visit for new prescriptions, but we also did a nerve conduction test on my hands, since I reported at my last visit that here Fidget is 2.5yo now, and I never have gotten full sensation back since the severe Carpal Tunnel Syndrome flare-up from pregnancy. Unfortunately the results aren't good; severe CTS in both hands, doc recommending surgery by the end of the year. So I'll go to see my neurosurgeon in 3 weeks. Normally this is done one hand a time so that people still have one good hand left, but just taking away one hand removes my ability to push my chair, transfer, use the bathroom, etc. so I may ask him about doing both at once. It means I'll be completely out of commission, but in this situation at least I'll only go down once instead of twice. The doctor actually finished sooner than expected, so we walked over to Barnes & Noble and browsed for awhile. On the way to pick up Fidget we got lunch at Dairy Queen, then once we had him shot off across town to Sunshine's gymnastics class. I don't normally go with her, so it was a treat to get to watch her practice and thankfully Fidget wasn't as much of a pill as I expected. Her coach reported she can tell she is getting stronger, which is great. We're mostly just in it for the fun and exercise, but I wouldn't be surprised if she gets into competition at some point. My main concern though is just that she develops good technique and conditioning so help prevent injury, which her gym does a great job of ensuring.

--- 3 ---

Tuesday morning Sunshine and I worked on her room while Fidget had ABA, then that evening we all went with her Daisy troop to a nearby pumpkin patch. The kids had a hayride, story time, got a snack, and each one got a mini pumpkin. Fidget esp. enjoyed himself; so many new sights and textures! He had this one pumpkin that he kept picking up and putting in my lap, so it came home with us as well. Tuesday was also my mom's birthday. None of us wanted her to just sit at home alone all day, this being her first birthday without my dad, but neither of my siblings were available, so Mom joined us for the pumpkin patch then we took her out to dinner. One of the local pizzerias was donating a portion of that evening's proceeds to our church parish, so we took her there. And wouldn't you know, we got sat right next to our priest! Papa Bear and I were a bit nervous how Fidget would do, but we actually managed to all make it through an entire restaurant meal for the first time in MONTHS! This was a huge relief and gave me hope that maybe we'll all actually survive our trip to WDW in the spring.

--- 4 ---

Wednesday was the one relatively low-key day of the week. Fidget's ABA case worker came to do a couple hrs of parent training with Papa Bear and I while Sunshine *finally* finished cleaning her room. We got some school work done in the afternoon, Sunshine went to CCD, and Fidget had his OT session. I was extremely glad for the quiet day; after three straight days of running around I could really feel myself struggling with fatigue.

--- 5 ---

Yesterday Papa Bear took Sunshine on a field trip to go hunting! Not much to shoot, but at least they had a nice hike. Papa Bear is on a stay-cation from work so he's been enjoying having some fun time with the kiddos. Fidget had morning ABA yesterday; they recently updated his schedule so he now has a full morning on Thursdays instead of just two hours. During the afternoon Sunshine and I read up on the sun and eclipses, and made two different kinds of pin hole projectors, but unfortunately thick cloudcover moved in about 45 minutes before the solar eclipse began. So we had to settle for watching the live feed from NASA, and Sunshine helped her Daddy fix supper while Fidget had speech. I loooove his speech therapist, and will be so sad when we lose her in the spring (when he ages out of early intervention). She said he is doing so very well; it amazes even her to think back to where we started 8 months ago. He didn't even call me Mama, would only label Papa Bear and Sunshine, not use their names for any purposeful reason, and wasn't attempting to name things around him. He had little receptive understanding as well. He still needs a lot of work on articulation, and there are still some things that he cognitively doesn't understand when we speak to him, but his vocabulary is almost caught up! Absolutely astounds me.

--- 6 ---

ABA this morning was cancelled, so we had a quiet morning around the house. Papa Bear fixed breakfast, then we all played outside and the kids "helped" him wash both cars. Sunshine has spent the afternoon playing with a neighbor friend, and Papa Bear went out to run some errands for me. This evening we have a Halloween party at Fidget's ABA clinic, which should be lots of fun. Tomorrow I'm going to try to have a regular school day with Sunshine, since we've slacked a bit on the formal school work this week. Fidget has ABA until noon, and Papa Bear is taking the troop camping training class at one of our council's camps. Then we'll all gather around the TV to watch the big LSU/Ole Miss game!

--- 7 ---

I'm happy to report that although I still have a day or so of medication left to take, I successfully made it through staph-watch without a trip to the ER. There were a couple of evenings I was a bit concerned, but by morning it always looked better. Especially in light of my now upcoming surgery for my hands, it was nice to dodge the bullet of a hospital visit at least once!

For more Quick Takes, visit Conversion Diary!

7 Quick Takes: Of germs and anniversaries

I've been missing doing a link-up since there's no longer a weekly Answer Me This, and our Wednesdays are proving to be way to busy for Whirlwind Wednesday posts, so I'm going to try to start linking up with

So to anyone who may be visiting my little corner of the digital world for the first time, welcome!

--- 1 ---

Maybe not the best way to greet new readers, but anyone who doesn't want to hear about my heebie-jeebies, feel free to skip this one!

For those who have never had the displeasure of experiencing it, staph infections are miserable. And once you've had an infection, you're "colonized" with it and it can recur at any time. The first time I got it was back in either 2003 or 2004, just before Christmas. I just went through a really painful one in August, and had another one pop up at the beginning of last weekend. I've been pushing my body rather hard lately trying to keep up with all the demands of my life, and obviously pushed it a little too far. I had come down with a cold on Thursday (which was thankfully short lived) and then Saturday I noticed a spot on my leg looking a bit infected. Since this isn't my first trip around this block, I went into wound care mode right away: washing with hibiclens soap, keeping it topically medicated with bactroban, gently helping it drain once it opened up. By Monday it had grown but was still staying relatively in check; I might have considered going in to the doctor then but Papa Bear is working a big turnaround at one of the local refinery plants, and my mom had gone to Disney World with my sister and her two teenagers while the kids were on fall break. So I kept managing it at home until Wednesday evening, when all the sudden the hot redness and swelling really flared up; then I had a second spot appear on my wrist Thursday morning.  So off I went to the doctor yesterday (both kids in tow) for oral antibiotics. I got gently reprimanded from my doc that I shouldn't have let it go so long, and he said it was "a breath away" from needing IV meds. He put me on two oral antibiotics, instructed me to continue what I'm doing with wound care, and that at any sign of worsening or lack of improvement relatively soon, and I'm to go to the ER. Easier said than done with needing someone to watch both kids, someone to take me in, Fidget's ABA schedule, and Papa Bear working roughly 24 hours on two job sites today, but we always seem to have a team of people around us who rally and pitch in when we need it. I just hope that after an initial dose in the ER they'll set up any further doses through home health and not admit me; I can break away for a few hours but can't imagine being MIA from the house for several days!

--- 2 ---

It's truly only because of Papa Bear that I was able to get over my cold so fast. I've learned from experience that with my chronic fatigue and autoimmune issues, when I'm coming down with something I have to give my body more rest than an average person would need so my body can focus on healing. So thanks to Papa Bear stepping up, I was able to spend pretty much all of Thursday evening in bed, as well as Friday morning during Fidget's therapy and the afternoon while he napped. And Papa Bear always fixes me my favorite sick dinner: grilled cheese, tomato soup, and a cup of hot tea. Now if I can just remember to take better care of myself! As much as I want to tell myself that I'm living a normal life, I have to realize that being an active paraplegic does take a toll on my body, and I need to build more recovery time into my weekly routine.

--- 3 ---

Speaking of Papa Bear, yesterday was our 10th wedding anniversary. Statistically we probably shouldn't have achieved this milestone: we were together less than four months when we got engaged, only about 14 total months when we got married, we married before 25, I was disabled less than six months after we got married, we've been through debt struggles, unemployment, and now raising a child with special needs. I'm pretty sure all of those should raise our likelihood of divorce, but before we got married we both discussed the fact that we intended this to be a life long commitment. "Irreconcilable differences" just isn't an option for us. We even went so far as to choose a covenant marriage license when we got married to ensure that if there was damage to our marriage, we would have to do absolutely everything in our power to repair it. Now, I know that I have my share of personal faults, just as there are things that Papa Bear does that bug me. But it's kind of like with kids - you have to pick your battles. Some things might be annoying, esp if they are habitual, but not worth making an issue over. If something is worth making an issue of, we try to address it calmly; he's not my third child, so there's no reason to fuss at him as if I'm fussing at one of the kids. (Though also like with kids, there are definitely times that we lose our temper with one another.) And for myself, if I feel like a bunch of little issues are piling up and I'm really getting aggravated with him, I try to sit down and literally make a list of all of his good points so that I don't let it build up until I snap. When I sit and remember all the reasons I married him in the first place, and all the ways that he has proven himself to be a good husband, then the little things don't seem so bad. I also try to sit and think about my own behavior, and if I have possibly done or said anything to provoke him annoyances. And unless one of us says we need time to cool down and finish a discussion later, we try to never go to bed angry. It means we've sometimes stayed up well into the night to work things out, but our marriage is certainly worth it.

--- 4 ---

While we were certainly excited and proud to have achieved such a milestone, our celebration yesterday was much less exciting. I spent the morning at the doctor, Fidget had two therapies, Papa Bear worked a little late, and he had to get to bed early because of his early wake up and long hours today. So for now it was just Papa John's pizza and Pitt football on the tv for our "celebration". (Hey, at least Pitt won!) Papa Bear has to take his vacation time soon so he doesn't lose it, and we have some gift cards to go out to eat, so hopefully we can actually enjoy a date night in the relatively near future.

--- 5 ---

The one exciting thing we did do for our anniversary was to get new wedding bands. Neither of us can actually fit in our wedding rings at the moment, not to mention that mine was getting a bit banged up from constant contact with my wheelchair rims, and Papa Bear isn't allowed to wear his gold one to work. So for our anniversary we got silicone wedding bands from Qalo, which will be both more forgiving of size fluctuations, as well as more suited for our lifestyle at this time. It was only recently that I had to quit wearing my original wedding band, but it's been quite awhile since Papa Bear wore his; it was nice to look over during dinner last night and see a ring on his finger again.

--- 6 ---

With me not feeling well and so much to juggle, school for Sunshine has been rather minimal this week. We did take an afternoon Tuesday to work on the basics, but mostly we're working in more of the fun things right now. (She's expressed to me some feelings of me never having enough time to do fun things with her anymore.) Last week in my bed we did 3-D illusion pictures of our hands, we've been reading books about cave men and germs, and working on some skill challenges for her DIY membership. Yesterday she drew what she thought a swimming skill badge might look like and made a list of potential requirements to earn it, as one of the challenges for the Maker badge. Another challenge is to make something that is your avatar picture, so we started making some lady bug rocks which we hope to finish today.

--- 7 ---

As for Fidget, we seem to have gotten past a reappearance of his fecal smearing. I think he was cutting a molar, and also HE IS NOW PACI FREE!! We are seeing an uptick in the pica as a result of no paci, which we knew would happen, but are working with the therapists to address that in an appropriate way. And he's been doing a lot of pretend play recently which is a big change for him: just this morning he and Sunshine were trotting (or at least he tried) back and forth across the living room pretending they were riding horses. Another funny thing he's doing is if he's on his way to find you in another room, he'll say "Coming! Coming! Coming!    What?" as if you had called for him (even if you didn't). So stinkin' cute.

For more Quick Takes, visit Conversion Diary!

A wonderfully delicious, not typical day

In contrast to yesterday's "typical" routine, today was anything but. Wednesdays are the only weekday that Fidget doesn't have morning therapy, so it's always a roll of the dice how our morning is going to go. Some weeks he'll play nicely on his own so that I can oversee a fair amount of Sunshine's schoolwork. Some weeks he'll be all about Mama time, and inevitably those are also the weeks that Sunshine can't manage to complete a single assignment without me hovering over her.

Today fell into neither of those categories. Sunshine brought me a bowl of cereal in bed. Fidget couldn't yet be bothered with food, and started playing cars. After she ate, Sunshine joined him. And they then spent the ENTIRE MORNING playing together! They played with his cars, they cooked in the play kitchen, there was some serious banging and giggling coming out of their room, and a declaration from Sunshine that her brother got bitten by a spider and died - "but don't worry mama, we're just pretending together."

Did I seriously just hear that??  They are pretending together. In a game that doesn't involve emergency vehicles and putting out pretend fires, which is what most of his pretend play has been surrounding lately. She was dictating the course of a game, and he was following. If I could have frozen time and savored the moment, I totally would have.

I did have to peek in at them at one point, because Sunshine had closed the door on Fidget's bottom bunk with herself inside and couldn't get the latch back open. While I was in there he started emptying out a doll high chair - my old Rainbow Brite doll high chair - and was about to climb in it. Thankfully I stopped him in time, and offered him one of Sunshine's baby dolls to put in it instead. He did so, made a comment that "doll eat" which inspired Sunshine to start a new pretend game. They carried the baby & high chair back out to Fidget's World, and fed the baby doll play food from the little kitchen and read it some of Fidget's board books.

Before long it was approaching lunch time. Sunshine hadn't done a single moment of school, and I didn't care a bit. What had just transpired over the course of our morning was so much more important than anything I or a school book could teach her. She's harbored some difficult feelings about her brother's autism, and the fact that he usually can't play with her like a neurotypical child his age, but I pray that this morning she saw a light at the end of the tunnel and can take comfort in the knowledge that all this therapy is helping, and in time he will become a more equal companion for her.

Fidget requested three bananas in a row, and several spoonfuls of peanut butter for an early lunch. Not surprisingly, he then declared "all done. go nap?" and went down a bit early and without complaint. Sunshine and I ate lunch together, then had about two and a half hours to do the essentials of school work before she & Papa Bear left for CCD and children's choir at church.

(And can I just say I think it is so sweet that he spends the entire two hours there on the weeks he is able to take her? He either goes upstairs to the chapel in the faith formation center or back to the adoration chapel -  in what used to be a sister's residence in the early days of our parish - and prays while she is in class, then he sits in the church and listens to the choir practicing. I loved my man before he was Catholic, but it is so beautiful for me to see him living out our common faith since his conversion.)

While they were at church, we had our first actual therapy session with Fidget's new therapist. We made the choice to part ways with our previous OT for a variety of reasons, and the new therapist is contracted as a "special instructor" with early intervention, which means she can actually work on multiple disciplines. As well, she's a special ed teacher at the school which he would attend, so hopefully she will be able to provide some valuable insight as we near him aging out of early intervention in the spring. She came out last week for just a meet & greet, and within five minutes of starting therapy with Fidget this evening, I could tell she will be a much better fit for both him and our family.

Papa Bear & Sunshine picked up pizza on their way home. Yes, it means that we totally broke Fidget's dietary restrictions, but sometimes the kid deserves the pleasures of a normal life. He sat nicely in his high chair and we were all able to enjoy dinner, and both kids got to watch a little of their favorite shows before bed: Full House for Sunshine, and a particular Fireman Sam movie for Fidget. There weren't even any crazy antics or stall tactics at bedtime.

I know the chaos which is our normal will return, probably first thing in the morning. But the blessing behind that chaos is that when simple days like this drift by, I am now so much more appreciative of them.

Homeschool 2014-1015: A Day in the Life of A Mom on Wheels

I've been wanting to chronicle a typical day in our house since my curriculum post, but I'm honestly not sure that we've had a typical day in that time span! Papa Bear had some weekdays off last week, a re-emergence of Fidget's fecal smearing, and some other non-standard stuff. Thankfully this week we seem to be just dealing with the normal levels of chaos and frenetic energy.

Tuesday, 6:30a Hubs leaving for work, says both kids are wide awake in their bedroom. I fall back asleep.

7:45a Sunshine has gotten her brother out of bed. They come to wake me up, then she fixes both of them cereal. Fidget, despite having asked for the cereal, dumps his all over the table then tosses the bowl on the floor. Yay, I love messes when I'm half asleep.

8:00a Sunshine has finished her cereal, the kids go in Fidget's World to play with cars while my brain wakes up. Finally get my version of coffee, a can of Dr. Pepper.

8:30a Realize that therapists will be here in half an hour, I take my meds and go get dressed. Sunshine eats more breakfast (yogurt and an orange). I then try to coerce Sunshine to get dressed herself. She wants to stay in her PJs, and isn't pleased with what I set out for her last night, so she reluctantly traipses off to find a different outfit. I'm way behind on putting away clean laundry, but getting caught up is not an option for today.

9:00a Therapists arrive as I am changing Fidget for the day. I try to quickly sweep the living room; Fidget swipes GF "Oreos" from the pantry. I finally get him to sit on the couch and eat a banana while watching Mater's Tall Tales on my iPad. Therapist P has a trainee today, so it takes them a little bit to get ready. Sunshine takes out the recycling and brings the can to the road, and fills up her water bottle before retreating to the office/school room. At some point Fidget talks me into a second banana.

9:30a I finally make it into the office, leaving Fidget and a bag of grapes in the capable hands of his therapists. Sunshine is coloring a picture of Our Lady of the Rosary which I printed out last night.

10:00a Sunshine finishes coloring. Claims she needs a snack already. No dice kid, you haven't done any school work yet. At least get through your morning journal, then I'll get us a snack. Fuss fuss fuss, whine whine, then finally she complies.

10:25a Halfway through journal, we have a prolonged potty break.

10:40a Finally getting back to journal. (She can do her whole journal in about 20 minutes; this is just typical almost-7yo dawdling and stall tactics.)
10:42a Sunshine is muttering under her breath that Fidget and the therapists are outside.

10:50a Journal done, we have pretzel thins and cheddar cheese for a snack. Typically I give Sunshine time to go ride her bike about now, but we've been dealing with some major sassy mouth and task avoidance issues lately, so no bike today. I point out that this is a natural consequence of making a 15 minute journal assignment take nearly an hour.

11:00a Get Sunshine going on English.
11:05a Sunshine is whining that this is boorrrrringgggg, I haaaaate schoooool, etc etc.
11:08a Sunshine gets back to work.
11:11a English done...amazing how quickly things done when you focus! Try to capitalize on the momentum, offer to let her do the workbook portion of English after lunch, and keep moving forward.

12:30p we've made it through spelling, a map skills worksheet, and half each of science and math.  LUNCH TIME!

1:40p Kids have eaten lunch, therapists are gone for the day. Fidget has been changed, read a story to, and put down for a nap; Sunshine has about 20 minutes of free time. She opts to get the iPad and go read on her Epic app in my bed. I throw in a load of laundry, check the dinner menu (thankfully just leftovers), catch up on this blog post.

2:10p Twenty minutes turned into thirty, but we're finally getting back to work.

3:15p Papa Bear is home. Reading and religion are done, still need to finish science, math, and the aforementioned English workbook.

4:00p We finish the day's school work just as the public school bus is passing by. Time to start getting ready to leave for Sunshine's scout meeting. Never did get to that English workbook; it will have to wait until tomorrow.

4:15p Papa Bear wakes Fidget to get him ready to go. A litany of "where is..." are sent my way. Smock, tote bag with her Daisy books, the movable pieces that go on the kaper chart I made for her troop, shoes, wipes, sippy cup, etc. One of the most exhausting parts of a SAHM's job is having to know where everything is!

4:30p Leave for meeting. Meeting runs from approximately 5-6:30. They review one of the petals for the sake of our new girls, and finally start their new journey book. Try to keep Fidget from being loud and disruptive in the meeting room, keep him away from the craft project that one of the older siblings is working on out in the hallway. Realize while the girls are eating their snack that I never ate lunch. Or breakfast, actually. Just that snack Sunshine and I had mid-morning. Monthly awards at the end of the meeting - their safety pin, last month's patch of the month, and a couple fun patches from last weekend's trip to camp. After the meeting, talk to her leaders about the investiture ceremony I've been working on plans for.

7:00p After stopping at the store for a couple things, we arrive back home. The remains of the pot of chili are quickly turned into a quick dinner of frito pie.

7:45p Send Sunshine to get ready for bed; Papa Bear and I tag team Fidget to get him changed, teeth brushed, and into jammies. Should probably offer the potty first, but we're all running out of steam, and we're still in the early, low key phase of just getting him used to the potty, so we skip it tonight. At some point when we hit heavy duty potty training we won't have that luxury.

8:00p Read stories to Fidget
8:15p Read stories to Sunshine
8:30p Kids' lights out (though Sunshine will probably read to herself with her little LED lantern). Take my meds, get myself ready for bed.

9:00p Crawl into bed to watch Chicago Fire with Papa Bear.

10:30p Lights out for Papa Bear. I'll pull out my iPad and check FB, play a few games, read until I'm drowsy enough to fall asleep. Set an alarm with intentions of getting up to see the lunar eclipse, but forget to un-mute the iPad from the Daisy meeting, so no eclipse for me.

11:30p Put the iPad away, say my prayers. Good night world until tomorrow!

Homeschool 2014-2015: My curriculum choices, and now we're official!

When we first decided to homeschool, I was surprised to discover that here in Louisiana children do not reach compulsory age for school attendance until age seven! This meant that as we were homeschooling kindergarten and first grade, we did not need to submit any notification to the state because Sunshine was not yet legally required to attend school. (Just don't tell her that!)  She will turn seven this fall however, so this school year marks our first as official, state-recognized homeschoolers. There are two registration options for homeschooling in Louisiana; we have chosen the least involved method for the time being, which simply requires that we register with the state as a private school. This meant our school needed a name, so we have chosen St. Dominic Savio Academy. I like that St. Dominic Savio isn't terribly common, but he's also very relatable for kids. He himself was still a teenager when he died, was very devout, and tried to help his schoolmates life holy lives for Jesus; a trait which I think any Christian parent hopes their child will have.

As a complete novice homeschooler when we started out in kindergarten, I opted to use a complete "box" curriculum while I was still discovering our styles of teaching and learning, as well as what types of curriculum were out there. For first grade I made a few substitutions, and this year for second grade I've gone totally eclectic and chosen all subjects myself. With Sunshine's giftedness this really is the best option for us, as it allows me to choose materials that are on her level, regardless of what letter or number is printed on the cover.

Image Source Image Source

Update: Links have been added! In the next few days I hope to have time to share my morning work printables available for download in a new post.

Morning Work: For her morning work, I created journal pages for Sunshine to keep in a binder. One side has her writing her name and the date (since she's my only student, she never has to do so for any of her papers!), our number of days in school, some basic addition, subtraction, and greater/less than, as well as writing the time in both analog and digital. On the back I give her a sentence to proofread for simple mistakes, she has a place to write her spelling words for the week, and a short 2-3 sentence journal topic.

Math: We're sticking with MCP Math, which we started off with in Kindergarten. It's not mind-blowingly exciting, but it seems to be getting the job done so I figure why fix what isn't broken? We're supplementing with Math Wraps to help practice her facts, some Base Ten blocks, pattern tiles, and logic puzzles.

Reading: I wanted a program that used real books and not readers, so once we got through the Little Stories for Little Folks phonics readers and Bigger Stories for Little Folks short stories from Catholic Heritage Curriculum (CHC) last year, we moved on to the Storytime Treasures series from Memoria Press (MP). The reading material in Storytime Treasures was a bit simple for her, but I found it to still be a good fit for her as she gets used to the comprehension portion of the student guides. We're finishing up More Storytime Treasures now, then we will move on to MP's second grade literature program.

Handwriting: Up until now, we used and liked the handwriting books from CHC. Sunshine, however, really wanted to learn to write in cursive this year, and CHC doesn't introduce cursive until third grade. So since I would say our current curriculum is Kolbe Academy "inspired," we're using this book which they recommend. I like that it reviews printing one more time before moving on to cursive writing.

Phonics & Spelling: Sunshine has always been a strong reader, but I wanted to make sure that for the sake of her spelling she didn't miss out on learning phonics rules. I particularly went looking for phonics and spelling programs that worked together, and settled on the "plaid" phonics series and Spelling Workout series, both from MCP.

Grammar & Writing: Last year I totally could not settle on a program, even after reading through lots of reviews. I was already using a couple of things from Houghton Mifflin Harcourt (HMH) and was pleased with them, so I found their English materials on Amazon and decided to just go with that until I found something else for the long term. I still haven't found anything else, and like I said with Math why fix what isn't broken; so we're sticking with Houghton Mifflin English again this year. It's obviously designed for use in a traditional classroom, but thanks to Amazon I can get the textbooks, workbooks, and even teacher editions pretty inexpensively.

Science: Since this was and is still my favorite subject, we decided it would be the one thing we would splurge on. For second grade we are continuing with the Harcourt ScienceFusion series. Each year I've been able to save 40% by purchasing through the Homeschool Buyer's Co-op; it's still expensive, but the multidisciplinary approach of digital lessons, book work, and hands on experiements really seems to help her grasp the concepts more clearly.

Social Studies: For the past two years we've used a general social studies, Harcourt Horizons, which I was buying inexpensively on Amazon. I've been happy with it as a general course, but this year at Sunshine's request we've decided to go it alone as we are starting in on world history. We're using "History Year by Year" as our spine and fleshing it out with library books and other activities. Continuing this year is our world geography using Little Passports as our spine (which is one of Sunshine's favorite parts of homeschool), and we're using the Evan-Moore Daily Geography Practice to work on map skills.

Religion: For religion this year I'm letting Sunshine go to CCD classes at church; last year since we were just starting out I did her CCD at home while we settled in. But I'm still supplementing at home with the CHC sacramental prep materials "Preparing to Receive Jesus" as well as the Baltimore Catechism, saint stories, the CHC character cards, etc.

Extracurriculars: We are of course continuing gymnastics classes for part of her PE lessons. She's still in Girl Scouts, and as her art/music class she has joined our church parish's children's choir. We also enjoy using the Wee Sing cd's and books at home. And for visual arts, in addition to our random arts & crafts projects she has requested an art center in our office/homeschool room for her birthday, so soon I'll be assembling a collection of nicer art supplies and a space to work. Plus we've signed her up with a membership on DIY, so while we haven't had much time to play with it yet it looks like it will be a good tool to give her an incentive to explore a lot of different areas.

We certainly don't get to every subject every day, but when I lesson plan I just make a list of lessons for each subject, rather than actually scheduling lessons onto a calendar, and when we pick something up we just start again where we left off. I figure the school year isn't a race, and we've got 180 days to fill. As long as I feel like we're making satisfactory progress, I don't stress too much. After all, one of the joys of homeschooling is flexibility, right? The weather is FINALLY nice after the sweltering southern summer, so a lot of days I let her out to just enjoy the freedoms of childhood. There will be plenty of cold, wet days and hot, sweaty days to hide inside with our formal learning.

Homeschool 2014-2015: How we got here

Sunshine and I are now about a month into our new school year, so I thought this would be a good time to remind myself and share with everyone else how we got to this decision and place in our family life. Later I'll write more about our actual curriculum this year.

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Neither Papa Bear nor I were homeschooled, and I don't think I ever knew anyone who was. Papa Bear attended local public schools from K-12, I attended public schools from K-8 before asking my parents if I could attend parochial high school. (This is ironic because he and I actually lived in the same school district growing up, but on either ends of town. Had I gone to public high school we would have graduated togther, but instead I never met him until we were grow up.) We live now under the same school system we grew up in, though since we live one town over a whole different set of local schools. Our school system as a whole is one of the best in the state, and a big factor for many people who didn't grow up here but moved out this way to raise their own kids. So for Sunshine, going to public school certainly would not have been the end of the world, but we both had this nagging feeling that it just wasn't the right fit for her at this time.

You see, I was identified as gifted in second grade, and had services from the end of that school year through 8th grade. There are a lot of gifted tendencies in my side of the family, and though we never have had her evaluated we presume that Sunshine is gifted. This is based not only on our own observations, but those of her teachers and directors in our church preschool, as well as some of Fidget's therapists, plus discussions with our pediatrician. Because of her giftedness, a number of things made me feel uneasy about putting her in a public school class.

For starters, the state requires children be 5 by September 30 to start kindergarten in a public school (and most private schools use the same criteria). In our church preschool we weren't too bothered by waiting to start because we were mostly sending her for social reasons, and her school days were pretty short. But as we started looking toward kindergarten, our school system said they flat out do not consider early entry at all, and they would offer "enrichment" at that age level but not acceleration. I know teachers are used to offering differentiated instruction, but I don't see what enrichment they could offer without acceleration that would actually be useful in preventing her from getting bored.

We also worried about boredom turning into a behavioral issue, esp. as we have only full day kindergarten here. One aspect of her giftedness is clear asynchrony in her emotional development, so I worry that frustration and boredom would have led to inappropriate outbursts. Also, so much is written these days about how pliable and wired to learn the young mind is; therefore we felt like making her sit in a class that was below her skill level would be in many ways a waste of her time. And from personal experience, I worried about years of teaching below her abilities would lead to poor study habits which would come back to haunt her later in life.

Next we looked at parochial K-8 schools. Our parish doesn't have its own school, but the school we would have considered seemed amazing and not terribly far. And I do think they would have done a better job of challenging her. But there was the transportation issue, plus the biggest concern was how we would ever afford nine years of it for her, plus nine more for Fidget. So after eliminating our two traditional, mainstream options we began to discuss homeschooling. At that point she was so far ahead that even if homeschooling was a total bust and we put her in public school starting in first grade, there was little concern about her falling behind her peers. I presented my findings from internet searches about the strengths of homeschooling in general, and he agreed to give me one year to try it out.

This was in about February 2013; Sunshine still had preschool until mid-May. But once we told her we had decided to homeschool, she declared she was ready to start then, even though she was still in pre-k! So I ordered the kindergarten curriculum from Catholic Heritage Curriculum (CHC), and about a week before Easter we started kindergarten. She truly flew through her lessons and by the end of August had completed all of her kindergarten books. We started first grade the day after Labor Day 2013, and finished up first grade around the end of July this past summer. (We had numerous breaks through out the year because of life getting in the way - my nasal surgery, my dad's hospitalization and eventual passing, Fidget's developmental evaluations, his ear tube surgery - so our school year got drug out quite a bit.)

This first year and a half certainly had its share of difficulties, but what doesn't? In particular because formal homeschooling is new for both of us, there has definitely been a bit of a learning curve to figure out what works for us. But I feel like we're finally finding our groove; and while there are some moments when I would gladly get up and shove her onto that yellow bus, there have been so many more that I am quite grateful for the opportunities that homeschooling allows us and look forward to many years to come.

Will Fidget enter our homeschool one day? I hope so, but only time will tell. We're not ones to put down an entire school system, or condemn all teachers. I know there are lots of good, traditional brick and mortar schools and teachers that do great things for a lot of kids. This decision was all about what was right for one child at this one time in her life. If at some point an option presents itself which we feel is better, then yes we might consider sending either of them. But there's no reason to rush; right now I'm just taking second grade one day at a time.

Random midnight musings

I have no idea what thoughts are about to flow forth from my fingers to this screen.

It is 12:30am as I sit down beginning to type this. I should be in bed. I was in bed. So why am I now up staring at a computer screen??

I. Can't. Sleep.

I haven't been up and down with either of the children (though Fidget did have a fever at bedtime). Papa Bear isn't traveling for work or out on a fire call; he's snuggled up sound asleep with his other bed partner (aka his c-pap machine). Even the cat is curled up on the corner of my bed, near where my legs should be.

I just can't sleep.

<Random sidebar #1: I say near where my legs should be, not where my feet should be, because I sleep with my feet hanging over the edge of the bed. Post-SCI, what sensation I do have tends to be hypersensitive, and when I sleep on my stomach, the pressure of the bed against the tops of my feet is actually to the point of being painful, esp against my toes...so I can feel that my feet are in pain, but I can't move them to fix them. It's obnoxious.

<Random sidebar #2: Sleeping flat on my stomach is for the sake of the skin on my rear. When you're hospitalized with paralysis, nurses want to come in day and night so they can turn you so as to prevent bed sores. Important, but annoying. So I set about to strike a deal with my night shift staff; since I was a belly sleeper anyway pre-paralysis, if I got them to help me roll all the way over would they please just leave me alone the rest of the night?? Luckily for me they went for it. At home, I will typically put my feet up on the bed, and then instead of a lateral transfer I just roll into bed, so I'm already belly down.>

Once I fall asleep I'm usually fine, but I've battled trouble falling asleep for a long time; over ten years I'm sure. I've tried all the methods that are "supposed" to help one fall asleep, but with little success. I think it comes from my gifted brain; I have major trouble shutting my thoughts off at the end of the day. I know it is often recommended to put your thoughts down in a journal at bedtime, but that doesn't work for me because I just keep making more and more thoughts. Mental plans, stewing over things that have gone awry, perseverating over random bits of information...it's like the Energizer bunny lives in my head. Usually I have success putting sitcom reruns on the TV: ones that I've seen so many times that I can just listen to them without having to actually watch the show, and following the dialog is just enough distraction to save my mind from itself. The Cosby Show is one of my favorites for this; well, actually, it's just one of my favorite sitcoms period, and the fact that I've each episode so often makes it quite useful for this purpose.

<Random sidebar #3: I'm so used to writing things on my iPad, that I now find it really annoying that the computer doesn't automatically correct my spelling/caplitalization/etc.>

Other nights, though, even the Cos can't help. My only recourse is some benadryl if I'm desperate, and then running myself to the point that I drop of sheer exhaustion. Once I reach that stage where I can hardly keep my eyes open, I'll climb in bed and put some instrumental music on Pandora, and finally drift off to sleep. I just wish that had come about two hours ago. My only saving grace is that because of Fidget's fever I cancelled his ABA for tomorrow. Mondays are his early day, with the therapist coming at 8am. Obviously I wish he weren't feeling poorly (esp since I'm not sure exactly what the problem is) but it will be nice not having to be up and moving after being up late.

It has now been half an hour since I sat down at the keyboard. I can feel the benadryl kicking in, and my yawns are coming pretty frequently. So I will shut down the office (again) and the living room lamp (again) and put on some relaxing music (again). I will offer prayers of eternal rest for my Dad - this past Saturday would have been his birthday - and pray that this time God grants my body rest before doing it all over again tomorrow.

Whirlwind Wednesday: Sept 17

Today was just...odd. Nothing particularly out of the ordinary happened, but our plans were constantly changing, and when I'm juggling so many balls at once I really prefer to stick with the game plan. Deep down I'm a much more relaxed, go with the flow type of person; but at this point a plan of attack is a matter of self-preservation. Changes to Papa Bear's work schedule mid-day, which resulted in having to find transportation home for Sunshine after CCD and Children's Choir at church; Sunshine being less than cooperative with school work in the morning (but thankfully straightening up and working really well all afternoon); and Fidget being offered ABA hours this evening to make up from a missed session on Monday -- it seems like I was constantly getting thrown curve balls and having to adjust. But we made it through to bedtime with no major issues, so I guess that's really all that matters.

Poor Fidget was so confused tonight; usually he had OT on Wednesday evenings, but we recently terminated services with our therapist. I liked her fine on a personal level, but for a variety of reasons it just wasn't a good therapy fit. We've already been accepted by a new therapist, just waiting on paperwork to process. But since he is blissfully unaware of these things, he kept asking me if, "J come?" I tried to explain that she isn't coming any more, but he was stuck on that line of questioning. Then when his ABA therapist showed up, he was really confused as she's normally only here in the morning!

ABA is continuing to go well; Tuesday we had his bi-weekly clinic meeting with his case worker & therapists going over what goals he's mastered in the last two weeks, and what we need to work on next. And Papa Bear had his parent training session this week also, which I am very grateful for. It's one thing for them to teach him things, but another thing for them to help us reach him, be consistent with teaching compliance, etc; but with most of the ABA during normal working hours Papa Bear doesn't get much opportunity to observe and ask questions. Speech is going well also; to look at his monthly report from when he started in March, to his most recent one from August, is really staggering in the volume of words and quality of his communication. 

And despite this morning's attitude hiccup, Sunshine is continuing to settle into a groove with her homeschool work. We've still been sticking with mostly the 4 R's - with only occasional science, history, geography - but I anticipate us diving into those next week. She and Papa Bear took a trip to the library last week, so I'm stocked up with books for those subjects again. And now that she's adjusting to the increase in difficulty from 1st to 2nd grade, Sunshine is getting quicker with finishing her core schoolwork. It also helps that she is eager to start those subjects since they are more fun, but knows she has to get through her core work each day before we can move on to the fun stuff. And we've had a number of discussions about the fact that Not Everything In Life Is Fun! But lucky for her, when you're only in second grade there is still a LOT of fun to be had. :-)

Whirlwind Wednesday, and 10 Random Facts

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!

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!