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.

The Simple Woman’s Daybook: May 20, 2013

Simple Woman's Daybook

FOR TODAY May 20, 2013

Outside my window… sunny and in the 80’s.

I am thinking… about the tornadoes in Oklahoma and all the first responders. I’m hoping and praying the death toll doesn’t go up any higher..

I am thankful… for a good birthday weekend.

I am wearing… preeclampsia survivor shirt and running shorts.

I am creating… plot ideas for NaNo.

I am going… to hope I can get some editing done this week in the midst of everything else.

I am wondering… what Friday morning will show. (I’m having an endoscopy.)

I am reading… I just finished Red Velvet Revenge by Jenn McKinlay.

I am hoping… that my endocrinology appointment goes well on Wednesday.

I am looking forward to… Daniel’s bedtime tonight. (Jon is at a meeting and the wee bairn refused to nap.)

Around the house… I’m loving the Roomba that I got from my in-laws even if I have to clean it out perfectly each night.

A favorite quote for today… “Evil is a parasite. It is there only because good is there for it to spoil and confuse.” — C.S. Lewis

One of my favorite things… Lipton Pure Leaf Raspberry Tea. I can get it in individual bottles at the store. Boo yah!

A few plans for the rest of the week: Morning Prayer tomorow, endocrinologist appointment on Wednesday morning and meeting with austism therapy people for Daniel’s evaluation on Wednesday afternoon, and the endoscopy on Friday.

Hosted by The Simple Woman’s Daybook

What I Wore on Sunday: May 19, 2013

Long, long ago, in a galaxy far, far away…

What I Wore on Sunday

Pentecost is kind of a hard birthday to have if you’re a pastor’s wife because it means festival worship (smells and bells though one step below Christmas and Easter) and it frequently means that it’s Confirmation Sunday so there’s usually a special reception afterwards which doesn’t work well with a child like Daniel.

Moving on…

Red and I don’t do well unless it’s a more brickish red and that shirt in my wardrobe is long-sleeved, making it incompatible with the temperatures in the 80’s today. Daniel also decided to disable my alarm clock (!!!) so I woke up at 9:45 and had to come up with clothes for both of us really quickly. Thankfully, I’d showered last night so my hair was manageable and I had clean clothes! Church also started late because of a recording malfunction that had to be fixed.

So… here are the outfits:

Jen with Daniel upside down

I need something to use as a prop because I feel strange posing by myself.

Just resetting the bear...

Daniel was more than happy to be my prop. 🙂 He also had no problem being upside down.

Jon with his guitar.

I decided to make this a family affair and hit Jon up for his picture before he headed out to his afternoon/evening engagements.

Here are the details on the outfits:

Jen
Shirt: Kohl’s
Pants: Kohl’s
Sandals: Naturalizer

Daniel
Shirt: Target
Shorts: Kohl’s

Jon
Shirt: Auton (hand-me-down from one of his father’s colleagues)
Pants: Nordstroms (hand-me-down from a colleague)
Belt: Kohl’s
Shoes: Kohl’s

Go visit Fine Linen and Purple and see what everyone else wore today.

The Simple Woman’s Daybook: May 13, 2013

Simple Woman's Daybook

FOR TODAY May 13, 2013

Outside my window… sunny and hot. I do not approve of 90F before June 21st (or really at all).

I am thinking… about the things I would totally say on this blog if I didn’t have to self-censor for pastor’s wife reasons.

I am thankful… for getting so much sleep yesterday and for Jon getting me dinner at Subway.

In the kitchen… spinach salad.

I am wearing… brown t-shirt with a ruched collar and black running shorts.

I am creating… plot ideas for NaNoWriMo in November.

I am going… to have a pedicure on Wednesday morning. I can’t wait.

I am wondering… some really snarky things about people.

I am reading… Red Velvet Cupcake Murder by Joanne Fluke. I’m reading a bunch of silly murder mysteries these days and it’s giving me a break from my regular life.

I am hoping… it doesn’t hurt too much when they use the Dremel on the calluses on my feet. (I’m a discalced kind of girl.)

I am looking forward to… seeing my parents/evil twin/sister-in-law this weekend for the communal birthday celebration.

Around the house… next question!

I am pondering… why people like to call me a “lib” or a “liberal” as an insult but get so incredibly worked up when I call them a “fascist moron”. 🙂

A favorite quote for today… ??…My idea of God is a not divine idea. It has to be shattered from time to time. He shatters it Himself. He is the great iconoclast. Could we not almost say that this shattering is one of the marks of His presence?..?? — C.S. Lewis

One of my favorite things… Lipton Pure Leaf Raspberry Tea.

A few plans for the rest of the week: Morning Prayer tomorrow, pedicure on Wednesday, autism team meeting on Thursday, and communal birthday celebration on Saturday.

Hosted by The Simple Woman’s Daybook

The Simple Woman’s Daybook: March 19, 2013

Simple Woman's Daybook

FOR TODAY March 19, 2013

Outside my window… cloudy with a chance of meatballs.

I am thinking… I have to stop biting my tongue.

I am thankful… that Daniel’s IEP went well yesterday. He has made progress and now that he can imitate, his learning can kick into warp drive.

In the kitchen… too many dishes to do.

I am wearing… purple shirt and Left Behind shorts.

I am creating… nothing at the moment.

I am going… to hopefully get adequate sleep tonight.

I am wondering… how I’m going to get the house clean for company next week if we’re going to be gone this weekend.

I am reading… The Alpine Uproar by Mary Daheim and Bread and Wine: Readings for Lent and Easter.

I am hoping… tonight’s episode of NCIS is good.

I am looking forward to… quiet when Daniel goes to sleep tonight. He didn’t take his nap so I didn’t get my necessary introvert quiet time.

I am pondering… various things.

A favorite quote for today… ??I can’t imagine a man really enjoying a book and reading it only once.?? ? C.S. Lewis

One of my favorite things… Cool Lime Refreshers from $tarbux.

A few plans for the rest of the week: WIC appointment on Thursday, this weekend TBA.

Hosted by The Simple Woman’s Daybook