The Simple Woman’s Daybook: July 29, 2013

Simple Woman's Daybook

FOR TODAY July 29, 2013

Outside my window… sunny and cool for this time of year — only in the 80’s.

I am thinking… that naps are wasted on cats and on the young.

I am thankful… for access to good medical care.

In the kitchen… chicken marinating.

I am wearing… green “Online Debate Team” t-shirt and black running shorts.

I am creating… blog entries and devotions.

I am going… to have a crazy day on Friday with parent training for Daniel’s ABA therapy, a doctor’s appointment, and a massage.

I am wondering… if Daniel will nap today as he’ll have had school plus 3 hours of ABA therapy.

I am reading… Going Going Ganache by Jenn McKinlay. I still have Apologia pro vita sua on my NOOK but I needed something light for a little bit.

I am hoping… for a quiet night.

I am looking forward to… my nail appointment on Wednesday.

Around the house… got vacuuming done today.

I am pondering… too many things internally.

A favorite quote for today… ??You never know how much you really believe anything until its truth of falsehood becomes a matter of life and death to you. It is easy to say you believe a rope to be strong and sound as long as you are merely using it to cord a box. But suppose you had to hang by that rope over a precipice. Wouldn’t you then first discover how much you really trusted it??? ? C.S. Lewis, A Grief Observed

One of my favorite things… quiet. I don’t have it at the moment and probably won’t have it until Daniel goes to bed unless he decides to nap after therapy today.

A few plans for the rest of the week: Morning Prayer tomorrow with Anne, mani/pedi on Wednesday morning (I feel like a yuppie suburban mom), and my crazy insane Friday of activities. Daniel also has therapy today, Wednesday, and Friday.

A peek into my day… Sharing the video of Matt Maher at World Youth Day again. What can I say? It’s powerful.

Hosted by The Simple Woman’s Daybook

The Simple Woman’s Daybook: July 22, 2013

Simple Woman's Daybook

FOR TODAY July 22, 2013

Outside my window… cloudy. I’m kind of hoping for some rain as that may explain my headache earlier or it could just be the Rocephen shot from this morning.

I am thinking… that I really hope Daniel doesn’t get the cold that turned into bronchitis for me.

I am thankful… for my parents being able to get me home yesterday when I was in no shape to drive because of the bronchitis. I’m also thankful for access to good medical care this morning to get treated.

In the kitchen… chicken marinating.

I am wearing… a black t-shirt with white Freya fur and black running shorts.

I am creating… blog posts.

I am going… nowhere exciting this week. I’m kind of glad — I had enough excitement this weekend.

I am wondering… if Cullen will stop shunning me tonight.

I am reading… Newman’s Apologia pro vita sua still. It’s a long work and I haven’t gotten much reading time these days.

I am hoping… I sleep well tonight. I have to sleep sitting up because being flat or even tilted makes me start coughing.

I am looking forward to… feeling better and being able to breathe again.

Around the house… cleaning to do for tomorrow’s visit from the respite person.

I am pondering… way too many things internally.

A favorite quote for today… “God is love, and that love works through men ?? especially through the whole community of Christians.” — C.S. Lewis

One of my favorite things… naps. They are wasted on cats and on the young.

A few plans for the rest of the week: trying to get copyediting done, blogging daily as part of ConversionDiary.Com’s 7-posts-in-7-days link-up, interviewing respite people on Tuesday and Thursday, as well as Daniel having ABA on Wednesday and Friday.

Hosted by The Simple Woman’s Daybook

52 Weeks of Blogging with a Purpose: If I Were To Win the Lottery…

The topic for this week: if I were to win the lottery…

[+] I’d take the cash option. I’m with Becky on this one. It’s more money than I think I’d ever see in my life and I would be investing it so that the amount grows over time, especially if it was hundreds of millions.

[+] I would pay off all our debt and that of my parents and in-laws. Both sets of parents made a lot of sacrifices for my husband and I and it’s the least we could do to help them out. As for our debt, it would be nice to wipe the slate clean and not have a car payment, student loans, or credit card bills.

[+] I would set up a trust for Daniel. Best case, he will have something to help out when he gets older. Worst case, it would fund his care if something happened to Jon or me.

[+] I would re-train as a respiratory therapist. I actually do better when I am working because it gives me some structure and I’d love to be able to do something I love. Unfortunately, this means re-training so I’d like to be able to do so without having to figure out financial aid.

[+] I would give a huge chunk away. I would definitely tithe it but I’d also want to do things like build schools in third world countries, help to re-hire laid-off teachers in Sacramento, fund a preeclampsia study, fund autism research, and make a large number of Kiva loans. I’d also help out a bunch of families with their adoption expenses.

I don’t think I’ve ever bought a lottery ticket on my own but it’s nice to dream sometimes.

Now go see Becky and what everyone else would do if they won the lottery.

Blogging with a Purpose: 5 Years From Now

This week’s topic: 5 years from now…

In five years, I will be 38. While that is still young in the grand scheme of things, there are still things that I am hoping will be worked out. Anything I put here is up to God in terms of whether it happens because I know fully well that when mortals plan, God laughs. So this is what I’m hoping will be in place in 5 years…

The puzzle that is Daniel, my medical mystery, to be assembled. Every time I think we have Daniel figured out, something new gets thrown at us. I’ve finally stopped crying every time it happens… most of the time. (The latest is him having mild hearing loss.) I’d like to have things with Daniel more figured out and for him to be able to be mainstreamed into a regular classroom.

My family to be “complete”. This could mean that Daniel is an only child, that I have another one naturally, or that we are called to adopt. Whatever it means, I’m open to what God has in store for me in this direction.

To have my respiratory therapy training or whatever it is that I’m going to be when I grow up figured out. Yes, I’m 33 and I’m still trying to figure out what it is that I want to be when I grow up. Current thought: respiratory therapist. I’d like to have it figured out and my training done.

Being part of a community choir that allows me to indulge my “great works of choral music” itch. I love to sing. I don’t have a place to really scratch that itch at the moment.

To have grown in grace and love for God. It’s my goal pretty much every day and I pray in 5 years to be better at conveying God’s amazing grace to others and to be better at loving God and His people.

Now go see Becky and where everyone else who is linking up hope to be in 5 years.

The Strength to Carry On

For those not familiar with what’s been happening lately, Daniel underwent a sedated ABR on Thursday that showed mild hearing loss. This is not a surprise and while it seems like horrible news, it’s actually a blessing to find this out. Daniel is like a jigsaw puzzle of sorts and this is a puzzle piece that we’ve received as to why he hasn’t developed language yet. The next step is hearing aids and the fabulous audiologist is working on getting that in motion.

I truthfully exist in a state with a stress level of 7 or 8 being calm and normal. My FNP jokes that if I come in and my stress level is that low, things are going well because it’s routinely an 11 out of 10. I don’t whine a lot on this blog about how hard it is to be Daniel’s mom because so many other people deal with harder things regarding their kids and do it so gracefully. I will say though: it is incredibly hard some days to be the mom of an autistic kid with so many health problems and I don’t know how I do it, save for the grace of God who gives me the strength I need to persevere.

There are some thank-yous in order however.

Thank you to my wonderful husband Jon who kept the house quiet today and took care of Daniel (even cuddling him this morning while Daniel napped on his lap) so I could spend the day sleeping and trying to get some strength back. It’s been a tough few weeks and I’ve appreciated the chance to recuperate after beating myself to a bloody pulp as I’ve tried to push through.

Thank you to my wonderful mom and dad who hosted us last weekend for the Promise Walk for Preeclampsia, especially my mom who pushed me to finish the three mile walk and watched Daniel so I could take a hot shower and try to avoid my muscles spasming. She also walked Daniel around so I could attend the program portions of the walk. 4 years ago, she caught the first flight she could get to be with me for a week while I tried to heal from my c-section and dealt with the trauma of everything, holding me as I sobbed every time I left the NICU and ripping the neonatalogist a new one after he made me cry.

Thank you to my friend Mary Kathryn of Crochet Chiq who posted a prayer request to Facebook on *my* behalf, asking for prayers for strength for me to continue being the mom I need to be. I don’t think there are enough words to say thank-you for that and it made me cry tears of gratitude.

Thank you to Jeanne, Mandi, and everyone who emailed me to let me know they were praying for us. You give me strength as you reaffirm that I’m not alone and there aren’t enough words to express how much that means to me.

Thank you to my wonderful #Cathsorority sisters who bless me with prayers for myself and for Daniel despite the fact that I’m not Catholic. I appreciate all of you so much and wish I could tell you how much you bless my life.

Thank you to Thomas of Strong Catholic for letting me babble to you on Facebook as I was sitting in the Recovery Area waiting for Daniel to wake up. I appreciate you listening to me when I’m sure I wasn’t making a huge amount of sense.

Thank you to Audrey Bracchi Au.D of UC Davis for working so well with Daniel and I, helping me formulate blog entries to enlighten people as to the findings, for explaining all of this to Jon over the phone, and for taking care of figuring out the next steps so I don’t have to. I really look forward to working with you.

Thank you to everyone at the UCD Children’s Surgery Center for being so awesome and making this process so painless. From Child Life meeting us at the desk to awesome nurses, a wonderful anesthesiology resident, and everyone else, you made my life bearable on Thursday morning, This is why I love working with UCD Health Services — y’all are just so awesome and patient-focused.

There are many other people (like Mrs. H, Daniel’s teacher) who deserve my undying gratitude but I felt the need to give some massive thanks to all the people who have gotten me through the last couple weeks.

Why I Am Not Homeschooling Daniel (III): My Reasons

Bonnie of A Knotted Life left this comment on last week’s Quick Takes:

I would love to read that homeschooling post. I had a great public school experience, we live in a good district, I see a lot of perks to homeschooling, and I??m very drawn to the nearest parochial school. The way I see it, there??s someone waiting to guilt me no matter what decision I make for my kids?? education, which is especially difficult because there are great benefits for all three of my choices and the negatives all are of about the same weight.

I think it would be cool if we could kind of crowdsource an answer for Bonnie. If you are so inclined, please email me (jen at grace-filled dot net) and in less than 75 words, tell me which one you picked (public/private/parochial/homeschool) and why you made that decision or why you would make that decision if you either don’t have kids or haven’t had to decide yet. I’ll run all the submissions fit to print next Wednesday. Sound like a plan?

Onto *MY* decision and my reasons for making it.

If you didn’t already know, Daniel was a preemie and has global developmental delays as a result. In November of 2011, our Regional Center worker was doing her 6 month check-in with us and asked us if it had been suggested that he was autistic. I said “no” and she suggested that we get him tested, saying that the Regional Center would pay for the test. Fast forward to January 3, 2012 at a developmental pediatrics consult with the MIND Institute and the team came in and told me that Daniel was very clearly autistic and if we didn’t already have a test scheduled, they’d be having us come back so they could administer the ADOS. A week later, a psychologist contracting with the Regional Center administered the ADOS and formally diagnosed Daniel as being mild to moderately autistic. (For those whose kids are suspected of being autistic, I just want to warn you that the test takes around 4-5 hours and they don’t want you to interact with your kid so bring a book or two.)

In California, per the Lanterman Act, the school district assumes responsibility of any child receiving services at the Regional Center once they hit their third birthday. I met with one of the school psychologists in early January 2012 and we talked through what the process would be. They did their own evaluations and I signed a bunch of releases for Daniel’s pediatrician, the Regional Center, and Easter Seals to give reports. We met for Daniel’s IEP (individualized education plan) meeting in late March and were given three options: the autism class at the preschool, the special needs class at the preschool, or just receiving speech and possibly occupational therapy through the school district while either homeschooling or putting him in a private preschool.

Our decision: The autism class at the preschool.

Why did we decide this?

[+] I am not patient enough to homeschool Daniel. Usually, people just laugh when I say that and say something about how I must be kidding because they’ve seen me with Daniel. Yeah, the patience I have with Daniel is an acquired skill. It is not my nature, to which my husband Jon and anyone who has ever had to live with me can attest. When I want something, I want it NOW. Not in five minutes. NOW. Kids like him tend to take their time with milestones and because he isn’t verbal yet, I would have a really hard time in figuring out if he actually understood a concept like the color green and it would drive me crazy not to be able to figure this out. Also, take your worst day with your kids throwing a tantrum and that’s a normal day of summer vacation/Spring Break/Christmas vacation for us because Daniel has communication tantrums. Last week, I had a number of days where I was curled up in a fetal position by 3:00 p.m. with “Winnie the Pooh” playing on the DVD player because I had been screamed at for so many hours straight. The tantrums have gotten better as I’ve taken him by the hand and gently led him over to his PECS book, asking him to please point to what he needs and then cheerfully offering to get it for him. (This is taking every ounce of self-control I have.)

[+] I hate being a housewife and stay-at-home mom. Note: I do not hate being a mom. What I hate is not being able to work outside the home and contribute to the finances. I loved my job in Montana so much that I went back as soon as they could medically clear me after I had Daniel. (I was supposed to be off for 6 weeks minimum and I think I went back after 5 1/2.) When my maternity leave was up, Jon and I worked our schedules so one of us could be home with him while the other was working and we had back-up people if that couldn’t happen. When we moved up here, my plan was to go back to school to be a respiratory therapist or a nurse once Daniel was in school. (That plan has been altered by the circumstances.) I would be horribly depressed (or even more horribly depressed than usual) if I was always home doing school with Daniel and he would likely be miserable because he’d be around a mom who was not her best self. Yes, there would be field trips and all that but that wouldn’t be every day. It’s necessary for me to be home right now just with everything that has to be juggled for Daniel’s care but it isn’t my preference.

[+] I don’t have the education or skills necessary to give Daniel the best education. My mother-in-law homeschooled my husband and his sister 30 years ago when it was the weird hippie thing to do. She had to pretty much invent her own curriculum and patch together whatever she could find. Today, there are hundreds of resources, curricula, and even online charter schools so I could pretty much buy something pre-packaged and use it. That isn’t my issue. I don’t have a bachelor’s degree in human development or early childhood education, a master’s degree in Occupational Therapy/Speech Language Pathology/Behavioral Sciences or a Doctorate in Physical Therapy. I would need all those things to adequately teach Daniel because his learning processes are completely different than they would be for a typically-developing child. While I’ve had a little bit of training in Applied Behavioral Analysis (ABA for short — it’s the methodology used in Daniel’s autism preschool class), it’s only enough to reinforce what he’s learning from school or his one-on-one therapies that start next week. His preschool teacher is beyond wonderful and all the aides in his class are ABA-trained. He has access to speech during his school day instead of separately and I seriously don’t miss being there for speech therapy — it was the most aggravating hour of my week!

[+] It isn’t a necessity for us to homeschool him. If we lived in a place where the schools were abysmal or we morally objected to what Daniel was being taught, it would be a consideration. Our public schools are fairly good, the local preschool with Daniel’s class is on the next block, Daniel is thriving in his class, and I have no moral objections to the curriculum being taught. (Yes, I do live in California where they actually do mention great historical figures who were gay but I really couldn’t care less about that.) With preschool, they aren’t learning anything incredibly controversial and once he gets into grade school, we’ll keep tabs on what is going on in his classroom. I’m married to a pastor and Daniel has one of the largest collections of Bible story books known to man — I think we can manage to pass on our faith and our values. If there’s something morally objectionable being taught in one of his classes, we’ll deal with it at that point.

So anyway, that’s why I don’t homeschool Daniel. This post didn’t come totally out of feeling judged or anything — it was a random post seed that came into being with last week being really difficult.

7 Quick Takes: Fundraising, Baseball, and Eating Issues

7 Quick Takes

— 1 —

Kym’s Hysterical (not) Hysterectomy. My friend Kym DuPont was diagnosed with stage 1 uterine cancer a few months ago. They tried hormone therapy which ultimately didn’t work. The only cure at this point is a hysterectomy which she has to pay for out of pocket because she is uninsured. (Obamacare doesn’t kick in for people like her until 2014.) Surgery + anesthesia + everything else will be ~$60000 so she has a YouCaring.Com page up for it. If you can spare a few bucks head over there.

— 2 —

Promise Walk. Is this a good enough reason to sponsor me in the Promise Walk?

Baptizing Daniel at 4 days old.

That’s Jon and I at Daniel’s baptism when he was 4 days old. My little hand is on the bottom and Jon’s hand is on top. For those who don’t know the backstory, I developed HELLP Syndrome and they had to do a really quick ambulance transfer from my tiny town in Montana to the hospital in Great Falls that had a NICU and where my perinatologist was based. I was in surgery within 45 minutes to 1 hour after arriving and they delivered Daniel by emergency c-section at 29.5 weeks gestation. He was 14 1/4 inches long and weighed 1 lb 15 oz. at birth. Additionally, I had a 30% placental abruption that they discovered upon opening me up and was bleeding severely. (I just barely missed ICU admission because the HELLP Syndrome started resolving itself with the delivery of Daniel.) As a way of dealing with what I went through, I got involved with the Promise Walk in 2011. Preeclampsia is a condition that affects 1 in 8 pregnancies and we still don’t know the cause so I want to ask that you please consider supporting me (even $5) in this effort.

— 3 —

Orphans. Do you see these three adorable kidlets?

First row: Brett and Iris.
Second row: Kaia.

BrettIrisKaia

Brett still needs a mama. Iris finally has a family committed to her. Kaia has a family committed to her who will be traveling to her country at the end of July to meet her and spend some time with her as well as complete paperwork. Click on their names to see their Reece’s Rainbow pages.

— 4 —

Progress on the Whole Change of Diet. It’s been a hard week. Daniel is on summer break from preschool and is in “destructive toddler” mode. This makes it really hard to make food because I can’t leave him alone and he currently isn’t allowed in the kitchen. I’m trying to avoid processed foods as much as possible but it’s pretty hard because those are the convenient foods when you have little ones like Daniel. I’m also now finding out how many calories I was usually eating — a packet of gummy worms is 110 calories per serving… and a serving is 5-7 gummy worms, making the entire package around 770-800 calories! My head has become a calorie computer and it’s to the point where I could get really OCD about this whole thing. I don’t own a scale for a reason — I’d be completely obsessive about my weight and could easily cross over into eating disorder mode.

— 5 —

Baseball! *sighs* The Giants dropped two of their three games against the Pirates. Their effort yesterday was pretty good considering they were without Angel Pagan, the Panda, Marco Scutaro, one of their pitchers, and Bruce Bochy — 12-8 was not the worst they could have done. They shut the Pirates out today which helped. I believe they’re on their way to Atlanta now.

— 6 —

Entry in the works. I’ve been pondering a blog post on why I don’t homeschool Daniel in response to the annoying twits I occasionally encounter in the blogosphere who act like public schools are going to turn children into Communists and godless heathen or who can’t *BEAR* to be away from their children and not share in all their learning adventures. (Gag me with a freaking spoon.) I’m being judicious about it because I know so many moms who homeschool their kids and are lovely, well-rounded people like priest’s wife, Sara, Cari, Dwija, and Kelly. I’m also trying not to write it only because I’ve been stuck in a house with a four year old who has been having communication tantrums for 4 days and I’m counting down the minutes until summer school starts. (Autism is a freaking joy on occasion.)

— 7 —

Mani-pedi time. My pedicurist talked me into getting a mani-pedi tomorrow instead of just a pedicure so I’ll be doing that tomorrow morning. I have my hands in so much stuff that’s either gross or corrosive so I usually wouldn’t do it but I figured it’s worth a shot. After the week I’ve had, I’m looking forward to it.

For more Quick Takes, visit Jen at ConversionDiary.Com.