Whirlwind Wednesday 6/11

Sometimes I feel like Dory in Finding Nemo:



We're still in the thick of it with Papa Bear working 7 days a week. I barely even know what day of the week it is any more, since there is so little variation in our daily routine right now. I just keep trying to remind myself to be thankful that my husband is busy working; esp. with so many health expenses for Fidget at the moment. And while it seems it's been going on for ages, I know it won't last forever. Just keep swimming....

Fidget is now fully recovered from his ear tube/adenoid surgery. We had our follow-up visit last Friday, and not only do his ears look good, he also passed his hearing test! Before surgery he was showing a 30% deficit in both ears, so this is a huge relief. We'll continue following up with his ENT every four months until the tubes are out. He's not a fan of his ear plugs, but hopefully will get used to them over time. I got an email from his ABA therapy provider today, asking for me to confirm his availability for sessions, so hopefully this means we will get that ball rolling soon. Unfortunately, I'm still waiting to hear from his new occupational therapist, so I put in a call to our case worker. There aren't very many OTs working for early intervention in this area, so hopefully we can finally get in touch with her and get things started; I'd hate to have to fire her before even meeting her, and I've heard that once she gets going she's really good for kids with sensory issues. We're also in the process of trying some diet modifications to see if they will help; I'm slowly removing dairy from his diet and it does seem like his bowels have improved, so hopefully we'll see some of his other physical issues improve as well.

And speaking of poop, someone used the potty for the first time this week! I'm not at all trying to potty train him yet, but he was in the tub and kept asking to sit on the potty. Once he was able to pee a little, and once had the smallest poop I've ever seen. I think he was mainly asking b/c he likes to flush the toilet, but at least is shows that he has some control over his elimination functions. Hopefully we can tackle this together with our ABA therapists; not only does he not have the ability right now to communicate a need to go, he also doesn't have the motor skills to get clothes off & on. And with is tendency to engage in fecal smearing, I worry that he'll go but then play in it. <sigh> But I can't get ahead of myself, no sense in worrying about those things until we're there. For now I suppose I need to either get a new little potty, or an insert to put over the toilet, so that we're ready to go when his therapists are.


Sunshine had fun pulling Fidget around the yard before dinner tonight. Right after I snapped this he chuckled and said "Car-car!"













Sunshine is still chipping away at first grade; she's either done or almost done with most of her primary curriculum, but she still needs about 30 more school days to meet the state's requirement, so I've brought in some fun, supplemental things. Lots of Rainbow Loom-ing going on for art, I recently restocked her with bands, got a storage box for all of them, and got her one of the new little Monster Looms. She definitely seems to have an easier time with that one than the full sized one, which she will get all the bands placed on but then pawn the looping part on to me. We've also got a new reading curriculum that has her reading actual books instead of readers; the books are a bit simple for her reading level, but it makes her think about comprehension more than she is used to, so overall it is a good balance. Our math book has been replaced by a book of logic puzzles (though we're still working on fact memorization on the side). and we're taking our time to go in-depth on her current science chapter about space.  Yesterday we started painting a wooden solar system mobile kit I got from Amazon, and she has a Magic School Bus chapter book on space for her free reading. We're definitely moving at a slower summer pace though so she has time to play with her neighborhood friends, and for formal summer activities. Tomorrow she finishes up two weeks of swim lessons, and next week she will attend Vacation Bible School. Then we'll have some (relatively) quiet weeks before she and a troopmate have a 3 day/2 night resident camp session. She's had sleepovers with family plenty of times, but this will be her first time sleeping at camp, and with no family accompanying her I know she's a bit nervous. It does help some that she went with her troop up to this camp for a service unit at the end of May, so she at least is a little familiar plus excited to see more. And I attended this same camp as a girl, and am confident that she'll settle in and make friends quickly, and will be too busy having fun to think about missing us. She's also excited about some of the new camping gear I'm getting her. I could have bought it more over time, and some things could probably wait, but I figure by buying it now she'll get more use for the money than if we waited a year or two.

I wish I could say I had something fun and exciting planned for Father's Day, but since we don't know yet if Papa Bear will be working I really can't plan anything. I'm also trying, though not succeeding, to avoid thinking about the fact that this is the first Father's Day since my dad passed away. But it seems like lots of things keep popping up to bring him to my mind. All happy memories, but the timing makes them bittersweet.






My Daddy holding little 3 day old me



Papa Bear has gotten a couple of his gifts early, because Sunshine is pretty much the worst secret keeper ever, and was busting at the seams to give it to him. A few days ago we gave him this gorgeous rosary from cordbands.com

And today this came in for him from Amazon. Not really a gift, per se, but I know he needs the organizational space and will appreciate it over time. One thing that is sorely lacking in our house is storage for all of his tools and lawn equipment, so hopefully getting the big long stuff out of his main storage cabinet will make it easier for him to put some shelving in to organize the rest of it.

I do have one more gift up my sleeve for him, but that one I'm not even telling Aubrey about, and he'll really have to wait for this one.




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As for me, aside from just holding down the fort I've been working on planning some home improvement projects, particularly redecorating the kids room now that Fidget is in a twin bed. They actually still had their "nursery" decor up, which we chose while pregnant with Sunshine, so I figure we got good money out of it, esp as nursery themes go. I'll have to wait on Papa Bear to carry out most of the execution, but I always have fun with the planning stages as much as the actual project. But for now there is a bed across the house calling my name. Many days lately I have stayed up late to work on domestic duties, but they'll have to all wait for another day.

Whirlwind Wednesday...

might become a theme on this blog. It seems like I'm constantly reaching mid-week before I finally get a chance to catch my breath and reflect on our goings on. I think because on Mondays we're trying to get our school week started in the morning, then Sunshine has her gym class in the afternoon; then on Tuesdays she has Girl Scouts in the early evening, so either Papa Bear gets home and almost immediately leaves with her, or else her troop leader picks her up to bring her, and Papa Bear joins Sunshine at her meeting. So even though we're already to mid-week, this is our first day of the week with nothing going on...at least, for now.

First off, aside from detesting his ear drops, Fidget is doing quite well since getting his ear tubes out in and adenoids cauterized last week. I'm absolutely amazed how quickly I have noticed an improvement in his enunciation. Words are definitely coming out more clearly now. Tomorrow morning will be his first speech therapy visit since getting his tubes, so I can't wait to get his therapist's professional opinion on his improvements. And speaking of therapies, we got confirmation from our case worker that the state has approved our request to add OT to his early intervention services, and our second choice therapist has accepted us as clients. I'm giving her until the end of the week to contact us; otherwise I'll be calling her to set up our first appointment.

As well, yesterday we had our intake appointment with our clinical supervisor from CARD, the Center for Autism and Related Disorders, which is the organization that will be providing Fidget with in-home ABA therapy. She has a PhD in behavioral analysis, and been with CARD since 1999, so I have great confidence in her abilities to oversee our ABA team. We had a good two hour discussion about his history and current abilities & struggles. Fidget was even "kind" enough to demonstrate some of his most problematic behaviors while she was here. Dr. PhD is recommending 35-40 hours a week, so once things get rolling that will likely mean 3-4 hours in the morning, and another couple hours in the evening, six days a week! I try not to think about the sheer volume of the therapy and how we're going to make it all work too much, not because I'm in denial but just to avoid feeling overwhelmed. But however it works in practice we'll deal with; my #1 earthly goal for each of my children is for them to be the best version of themselves possible, and as their mother my most important task is to give them each the tools needed to meet that goal. So if ABA gives him the best set of tools, then ABA it shall be.

Likewise for Sunshine; our biggest reason for deciding to homeschool was because we felt that for THIS child, at THIS time in her life, homeschooling would give her the best tools to be the best version of herself. Public and parochial schools do great things for many children, and the vast majority of teachers and other professionals working in the school systems are hardworking, devoted men and women who don't get near the appreciation they deserve. We aren't ruling out the possibility of either child transitioning to a traditional brick-and-mortar school later on; we're just taking things one year at a time and seeing what each of them needs in that moment. Especially for Fidget: we certainly have several years until we reach that point, but I would have no hesitation to admit if he needs more specialized help than I am comfortable giving him. But with countless hours of multiple therapies between now and then, it's not a decision we'll worry about until its time comes.

At this moment in time, Sunshine is absolutely thriving in homeschool, and I don't regret our decision at all. Because her birthday is late in the year, our school system would have required her to be in kindergarten this school year. We did start with a kindergarten curriculum, but let her move at her own pace, and since graduating pre-k last spring has not only completed kindergarten but is almost done with first grade! The public schools in our area are finishing school this week, but since we didn't move on to first grade until September, plus the need to take time off here and there for surgeries, general illness, bereavement, etc we still have about 40 school days to complete. But I'm not worried about it; as long as we keep chipping away at things over the summer we'll get there when we get there. It's been such a joy this year to follow her down the rabbit trails of things she wanted to learn, to be alongside her when she would have "ah-ha" moments as new concepts clicked, and it also gave us more opportuities to talk about emotional issues and work through some of her behavioral struggles. One thing she is lamenting is the lack of regular playmates, esp during the day. She plays quite a bit with the neighborhood kids in the afternoon/evenings, but when none of them are able to play she finds it hard to cope with. Partly I think this is because her brother has not yet become the reciprocal playmate we would have expected. The other part of it is that life  circumstances have caused us to not be as active in our local homeschool group as we had hoped. Hopefully we'll be able to participate more in the upcoming school year, or at least set up more play date visits at our house. My childhood best friend has a daughter who is only 6mo older than Sunshine, and they are homeschoolers as well. The girls are two peas in a pod just like their mommies; they're coming over for a visitFriday afternoon, so Sunshine has been looking forward to that all week.

We'll also be continuing both gymnastics and scouts in the fall. This week was the last week of her spring gymnastics session, but we decided to take the summer off from gym so that she can enjoy some other opportunities: swimming lessons, vacation bible school, and *hopefully* a three day/two night session of resident camp. She's been away from home for that long many times, but always staying with family. I'm talking to some of the other scout moms to see if anyone else is interested; I think I've found one of the girls who might like to go at the same time. If she has a friend to go with I am confident she'll be ready to go; if she has to go on her own, it's a bit more up in the air. Their troop is going to camp for the day on Saturday, so I'm hoping that will give her "camp fever" and help her feel both more excited and more confident about an overnight trip.

As for myself, I'm just doing what it takes to stay afloat around here. I'm coming down with the sinus crud the kids had last week, plus Papa Bear is traveling for work right now, so my hands and time are quite full juggling my health, the kids, the daily household chores, making all of our summer arrangements, researching complementary therapies for Fidget, and soon will need to make some choices on Sunshine's curriculum for the fall. One thing is for certain: even an ordinary day around here is never boring!

How I Got Here

During my first pregnancy, people said, "You'll be raising a child and you're a paraplegic, that's so interesting! You should write a blog!" But I'm just a regular mom aside from the wheelchair, who would want to read about me?

When I started homeschooling my oldest, people said, "You should blog about your homeschooling!" But there are so many great homeschool blogs out there, and I'm just a beginning homeschooler; what would I have to share?

Then my youngest was diagnosed with Autism. Again people said, "You're a disabled mom homeschooling your gifted daughter, and now working with your autistic son. You've got so many unique perspectives to share." So I started thinking about it.

Last night, one of my favorite bloggers, who has two sons with autism, wrote about how we need to tell our stories. Then this morning, the topic of starting a blog came up in one of my Facebook groups. Today is my birthday, and after 34 years I think God is telling me it's time to start sharing.

And now here I am. So pull up a chair (don't worry, I brought my own), and join me as I share the stories of my life in all my many roles. I'm a woman living with paralysis, a wife, a stay at home mom, a homeschooler, and a cradle Catholic keeping my faith at the center of it all.