31 Days of Parenting Kiddos with Special Needs: Mental Health

31 Days of Parenting Kiddos with Special Needs

Yesterday, I spoke about the caretaker parent needing to have time scheduled in for recharging. In the past, I’ve been told that making such a request was unreasonable and as the mother, it’s my duty to stay home with my son.

Yeah… no.

My mom stayed home with us until we were 4 years old and then had to put us in preschool/daycare because she had to go back to work. (My dad was a mechanical engineer and Silicon Valley was having job issues at the time. It was not economically feasible for her to continue staying home with us, even though she wanted to.) As much as I hated being left at daycare every morning (and howled for months every time we were dropped off), I did have fun and was in daycare after school every day until my brother and I were old enough to stay home by ourselves. When I got pregnant with Daniel, I expected that he’d be in daycare and I’d be working. The bump in that road came when he was born so prematurely. Daycares *REALLY* don’t like preemies because they tend to have lingering problems and their immune systems are really fragile. While we were living in Montana, Jon and I managed to juggle our work schedules so one of us could be home with Daniel every day. I didn’t start being a housewife and stay-at-home mom until we moved to southern California.

So… having said that, having that time to recharge (and I’m talking about maybe an hour or two to myself at the end of the day) is essential to my well-being and it’s not an unreasonable request. After all…

You can't give what you don't have.

There is such a thing as caregiver fatigue and I’ve seen some pretty scary cases of it in my own family. The caregiver needs to have some break from what they’re doing — it is impossible to give that much without doing something to recharge your mental/emotional reserves.

Another aspect of mental health is your spiritual life. If you’re atheist, that might look like keeping your belief in good people. If you’re me, that means getting some time each day to pray and read Scripture. What that prayer time/quiet time/devotional time looks like is up to you but it is essential to find time for it.

31 Days of Parenting Kiddos with Special Needs: Marital Impact

31 Days of Parenting Kiddos with Special Needs

Laura of Inclusive Ignatian Spirituality asked me a couple weeks ago if I could address the impact of having a kiddo special needs has on a marriage.

Absolutely. 🙂

I wish I could say that it had no negative impact on mine but it did. If I had everything to do over again, I would have really laid down what needed to happen back in 2011 when I was staying home with Daniel while Jon was off doing church stuff. It was really difficult for me to be home with Daniel because a.) I hate being a housewife with a burning passion, and b.) I felt really resentful that Jon got to leave the house every day and go work in an office, take drives, etc. without having to figure out how to occupy or take care of a kid who was a challenge to understand. I am a perfectionist to the maximum degree and the fact that I couldn’t figure out how to reach Daniel really caused me a lot of pain. Jon’s day off was Friday and I had to try and get all my doctor’s appointments, massages (medically-necessary because of the fibromyalgia), and Daniel business done that day so that Jon wasn’t having to blow off any of his commitments on other days to watch Daniel. My life got a lot easier when he started preschool because I gained a 5-hour window where I could try and get stuff done and not have to think about how to work Daniel into the equation. Still, almost all of Daniel’s care was on my plate in addition to the full-time job of advocating for him. (Those who think that Medicaid and SSI are easy programs for which anyone can qualify has never had to apply for either one or try to keep the services for which your kid qualifies.)

If I could do everything over again, I would probably have sat down with Jon at the beginning of his call in Galt and listed what needed to happen and divvied it up so that I didn’t have all of the housework, almost all of the Daniel care, and all of the Daniel advocacy on my plate. Ten days into our time in Galt, Daniel ended up in the PICU and that kind of threw everything off including the unpacking of the parsonage which really didn’t ever get accomplished.

I guess my recommendation is that a couple needs to sit down and talk through what needs to happen for their kid and how best to make that happen. If the mom is going to stay home with the kiddo, the dad needs to count on that being on the same level as his full-time job and not his wife having nothing better to do and able to take on all the housework in addition. Things like chores need to be split in such a way where the care-taking parent can focus on the kid but also get some time to recharge. I’m an absolute introvert and need to be BY MYSELF to recharge so that meant that while Jon, an off-the-charts extrovert, needed time with me to charge his batteries, that time couldn’t be time where I could recharge. Instead, things like taking a book to a coffee shop or restaurant and reading while I ate counted toward recharging time and I usually stayed out in the living room and watched TV/surfed the Internet while Jon put Daniel to bed.

Again, the way you make this work is going to vary from couple to couple and family to family. I never really felt like we made it work all that well because I was still under an incredible stressload; but I think part of that was the fact that I was a pastor’s wife and was constantly on display for people to critique so I always had to be perfect or else I incurred the wrath of some of Jon’s parishioners.

31 Days of Parenting Kiddos with Special Needs: An Example of Being Thankful in the Midst of Crisis

31 Days of Parenting Kiddos with Special Needs

I’m trying to get my Excel homework done and uploaded so please accept a snippet of a post on Thanksgiving in the midst of the PICU from 5 years ago.

So I’m sitting on my fold-out bed in the PICU (Pediatric Intensive Care Unit) with Daniel. (He got my cold. Chest colds and him don’t mix well. He spiked a 102F fever and started having problems breathing. I think the rest of the story is self-explanatory.) In an effort to ward off the pity party that I’m so incredibly tempted to throw for myself, here are seven things I’m thankful for right now. Oh yeah… updates on his condition and what’s going on can be found here.

— 1 —

Daniel having Medi-Cal through SSI. It’s paying for what our insurance doesn’t. Given that our last PICU trip involved a 19 day hospital stay, this could add up pretty quickly.

— 2 —

My mom. She drove us to the hospital (we’re down with my parents) and stayed with us until they brought Daniel upstairs. This entailed reciting loads of poetry and nursery rhymes and helping to hold the little bear down while they did unpleasant things to him. Words can’t express my gratitude.

— 3 —

My evil twin. He brought Jon down with a container of Mushroom Risotto for me. Last time we had a PICU stay, he stayed with Jon and I through the worst night and hosted my parents on the weekends so they could be with Daniel and I.

— 4 —

Jon. He read to Daniel and came upstairs with us and prayed with him. He also brought me clean underwear and pajamas as well as part of my prescriptions. I’m loving the clean underwear, the jammies, and the Klonopin.

— 5 —

The speed of the ER peeps once the words “respiratory distress” were uttered. We were only down in the ER for 3.5 hours. (Normal is 4+.) We had a doctor checking him within 10 minutes. That’s impressive.

— 6 —

People praying. I put out the word to my people and there should be prayers ascending. Please also add yours in. We can’t get enough prayer right now.

— 7 —

Being ahead on NaNo. It’s meaning that I might actually make it to 50K before 11/30 this year.

The Simple Woman’s Daybook: October 23, 2016

For Today…

Simple Woman's Daybook

Looking out my window… dark. It was in the 60’s today with some clouds moving in a little bit ago and a short shower. My joints are feeling better now that the BIG weather systems have rolled on through.

I am thinking… about my week and what is on my plate in terms of school, Daniel, church and everything else.

I am thankful… I’m doing better in terms of this stupid virus than I was last Wednesday afternoon and evening.

One of my favorite things… when all my numbers balance on my Accounting homework. 🙂

I am wearing… jammies. Church clothes were my turquoise/black/white bokeh Easter dress with a black camisole underneath (Kohl’s), my black cardigan (Kohl’s), black tights (Target back from when we lived in Montana), and my black flats (Naturalizer). A couple people commented on how pretty I looked in my dress. (I usually dress up for church but my outfit today was apparently a big deal?) After church, I changed into my blue-green shirt from Old Navy and jeans from Kohl’s.

I am creating… formulas for my Excel submission assignment that is due tomorrow at 11:55 p.m.

I am listening to… “Cops: Reloaded” on TV. I’ll probably switch to various musical pieces in a bit.

I am hoping… to be over this stupid respiratory thing soon.

I am learning… about adjusting entries in Accounting.

In my kitchen… steak, potatoes, bacon caesar salad, and cookies with ice cream for dessert.

In the school room… Daniel’s “fall family meeting” went super well. He’s making progress and his teachers/aides/therapists are smitten with him. 🙂

Post Script… You know you have the respect of your LGBTQ friends when ones that are very anti-religious send you an article from a religious publication you like and ask for your honest thoughts on it. 🙂

Shared Quote… I have two for you today. The one on courage is from my friend Laura.

A lovely RFK quotation.
Laura's quotation on courage.

A moment from my day…

Closing Notes: When I was writing my piece on Friday, a piece of code that was supposed to bold something got inserted in a weird place and I didn’t find it until last night when I was reading over something. It ended up putting the last part of the second C. Everett Koop in bold type… a part that I think *ALL* of us need to read and re-read endlessly in this election cycle.

Well-played, WordPress. Good move, God.

Hosted by The Simple Woman.

31 Days of Parenting Kiddos with Special Needs: Hospital Bags

31 Days of Parenting Kiddos with Special Needs

I’m still feeling like I’m dying so I unfortunately had to skip my grandma’s 96th birthday party today. (I’d feel really bad giving her this mutant death cold as a birthday present.) The kidlet and I went and got French fries after everyone left for the party and we’re currently hanging out on the bed having screen time.

Pardon my double-chin...

Given the amount of time I’ve spent in the pediatric ER and hospital with my kiddo when he has had mutant death colds, RSV, and respiratory issues, I thought I’d share what I used to keep in my laptop bag in the event that we were hospitalized.

  • clean underwear (because I can live in one set of clothes for days at a time but I need clean underwear to be sane)
  • a clean set of jammies (because inevitably, whether or not to admit him would be decided at 3 a.m.)
  • a 24-hour supply of my daily medication (because I have to function in order to take care of the kid and this gave me some time to compile a list of stuff for Jon to bring)
  • granola bars (because 6 hours in the ER makes you hungry)
  • travel-sized toiletries (in the event that the kiddo got admitted so I could take a shower on the unit)
  • a bunch of bottles of alcohol gel (because I’m germphobic to the max)
  • my e-reader (for when I would get to go have a meal by myself)
  • my laptop (duh!)
  • an extra power cord for my laptop
  • an extra cellphone charger

Any of my other special mama friends want to add to this?

31 Days of Parenting Kiddos with Special Needs: Choosing Life (III)

31 Days of Parenting Kiddos with Special Needs

I voted on Monday and wanted to be DONE with the election so I didn’t watch the debate on Wednesday. I am, however, hearing pieces of what was said and one topic that everyone seems to want to talk about is what Hillary and Trump said regarding late-term abortions, whether unborn babies have rights, etc.

I know that this is a serious issue and that people on both sides have very passionate feelings about it. However, I have one request:


I’m asking this as one who has both had their life endangered by their pregnancy and one who faced the possibility of having a baby with disabilities and was asked to consider terminating the pregnancy. Last year, I had a close family member ask me if we could screen for autism in the womb so I could abort my next kid if they were autistic. (I no longer have a relationship with said family member for a reason.) My views on abortion did a complete 180 after my pregnancy with Daniel, especially after I read the following quotation from former Surgeon General C. Everett Koop:

Protection of the life of the mother as an excuse for an abortion is a smoke screen. In my 36 years of pediatric surgery, I have never known of one instance where the child had to be aborted to save the mother’s life. If toward the end of the pregnancy complications arise that threaten the mother’s health, the doctor will induce labor or perform a Caesarean section. His intention is to save the life of both the mother and the baby. The baby’s life is never willfully destroyed because the mother’s life is in danger.

When I was trying to find the correct words for the above quotation, I came across another quotation of his that fit our current situation as a nation:

The American ideal is not that we all agree with each other, or even like each other, every minute of the day. It is rather that we will respect each other’s rights, especially the right to be different, and that, at the end of the day, we will understand that we are one people, one country, and one community, and that our well-being is inextricably bound up with the well-being of each and every one of our fellow citizens.

For the record, I think that Hillary is misguided in her view that unborn children aren’t people and don’t have rights… but I also know that what she’s trying to avoid is a woman being forced to carry a child, even if doing so *WILL* kill her. With Trump, I do not believe for one second that he is pro-life nor that his election as president will lead to Roe v. Wade being thrown out as people claim it will. Five of the seven justices who were in the majority on that decision were Republican appointees and it was a Democratic appointee who wrote the dissent. When it was upheld in Casey vs. Planned Parenthood, the five justices in the majority were all Republican appointees and the lone Democratic appointee on the court voted to overturn it. (Source)

I guess what I’m trying to say in all of this is that unless you, yourself, have been in my shoes, don’t even pretend that you have any right to judge any decision I did or did not make. I obviously decided in favor of not aborting Daniel (my words were along the lines of “I’ll have the ultrasound but I will not do amniocentesis nor will I abort my child because they will be loved regardless of the outcome” and the ultrasound backed up my decision); but I have several friends who made the decision to terminate the pregnancy when it was discovered that their child had problems that were indeed incompatible with life (I think in one case, the skull had not formed and the brain was floating in the amniotic fluid) and I can’t even comprehend the idea of telling them that they were wrong when I might have made the same decision when given the same information. It’s very easy to say that you would not decide to go a certain direction when given a hypothetical situation but it’s a decision that will feel like it’s about to rip you in half when it’s your baby or your life that is in jeopardy.

I’m also aware that this is not the most fluid response to what is going on but it’s a really tough issue for me and I’m trying to sort through all of my feelings right now.

7 Quick Takes: Sick As A Dog Edition

7 Quick Takes

— 1 —

Prayer Request. Yesterday, I got hit with the crud Daniel had last week as well as a severe fibromyalgia flare-up. The pain was so bad that I was almost in tears. I’m slightly better today but I had to miss class to sleep off the Flexeril I had to take to try and help with my achy joints and muscles. If you could pray for some healing for me, I would appreciate it. 🙂

— 2 —

Voting early and voting often. I got my absentee ballot in the mail on Monday and voted immediately, tossing it in the mail on my way to campus on Tuesday. Unfortunately, the mainstream media didn’t get my message that they could cancel the debate last night and as well as all the political discussion because I had already voted.

— 3 —

Speaking of the debate… Having the debate between Clinton and Trump was kind of pointless because I really don’t think there is anyone who hasn’t decided between those two. A more helpful thing would have been to have the debate between Jill Stein, Evan McMullin, and Gary Johnson — you know, the third party candidates that a lot of people are considering because they can’t fathom voting for Trump or Clinton.

— 4 —

Doing your devotions. Jessica talked this week about how she has her devotions. Mine really depend on the day and what’s going on but I’d love to know what all y’all do. Leave me a comment or email me and let me know!

— 5 —

A day in my life with Daniel. I blogged about a day in my life with Daniel yesterday. It’s slightly atypical in that I’m not usually in my jammies so early in the day, I don’t usually spend that much time in bed, and I usually have choir on Wednesday. Unfortunately, it was Day 1 of me being sicker than sick so I had to bow out of choir.

— 6 —

New glasses. I ordered my new glasses from Firmoo on Friday and they arrived in the mail yesterday! I cannot say enough that is positive about Firmoo — they have been a wonderful company with whom to work.

Glasses #1
Glasses #2

— 7 —

Astonished. I got another 98% on my Accounting test on Monday. (I missed a 2-point question on a definition.) Considering how mathphobic I used to be, I’m laughing at how much I am enjoying this. I even worked on Accounting homework while sick in bed last night!

For more Quick Takes, visit Kelly at This Ain’t The Lyceum.