31 Days of Parenting Kiddos with Special Needs: And So It Begins


31 Days of Parenting Kiddos with Special Needs

So here we are again. The Write 31 Days challenge is upon us and I had to come up with a topic for this month. As it is constantly on my mind these days, I picked “parenting kiddos with special needs”. I am hoping that whatever I write will help to encourage or educate or at least resonate with someone and make them feel less alone in their parenting.

This post will be stuck at the top of my blog for all of October so that y’all can have links to the things I am writing.

For the sake of disclosure, the graphic for this event is a picture of Daniel taken by his physical therapist at a park date with her in December 2011 and altered in MS Paint. (Canva wasn’t doing it for me this time.)

Day 01: My Story
Day 02: Developmental Delays
Day 03: Autism
Day 04: ADHD
Day 05: IEP’s and 504 Plans
Day 06: Blogger Spotlight on Mary of “Passionate Perseverance”
Day 07: Blogger Spotlight on Kelly of “This Ain’t The Lyceum”
Day 08: Doctors
Day 09: Information Literacy
Day 10: School Choices
Day 11: You Know You’re The Mom of A Developmentally Delayed Kid…
Day 12: ID Bracelets
Day 13: Checking In
Day 14: Snarky Answers to Stupid Remarks
Day 15: Blogger Spotlight on Rebecca of “Backwards in High Heels”
Day 16: Choosing Life (I)
Day 17: Choosing Life (II)
Day 18: Autism Speaks
Day 19: A Day in My Life with Daniel
Day 20: Blogger Spotlight on Kathleen of “So Much to Say…”
Day 21: Choosing Life (III)

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.

31 Days of Parenting Kiddos with Special Needs: Blogger Spotlight on Kathleen of “So Much to Say…”

31 Days of Parenting Kiddos with Special Needs

I’m fighting a bad cold so you’re getting another “cheater” post today.

Why I’m spotlighting this blogger: I got to know Kathleen probably 5 years ago while doing the “7 Quick Takes” meme when it was still hosted by Jen Fulwiler. We bonded over a love of music and our kiddos. She was one of my first blogging cheerleaders for Daniel because she knows what it’s like for your kiddo to *FINALLY* hit a milestone — her daughter Julianna was born with Down Syndrome and Kathleen has dealt with many of the same things with Julianna that I’ve faced with Daniel.

One thing I seriously love: she and her husband Christian take Julianna to medical schools to meet and talk to medical students so that they can see that while Down Syndrome can be a potentially “scary” diagnosis, it is not “incompatible with life” in the least.

Go check her out!

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.

31 Days of Parenting Kiddos with Special Needs: A Day in My Life with Daniel


31 Days of Parenting Kiddos with Special Needs

I thought it might be a good idea to show you what my day with Daniel looks like at the moment so you can get a sense of his routine, etc. I’ll be updating throughout the day so stop back every so often. 🙂 Oh yeah, I also use military time because it’s easier for me.

0100: I’ve been on Facebook with a friend needing someone to talk to and Daniel is now awake. Once I’m off of Facebook messenger, he looks at me and tells me, “I want cookie.” Fine. I tell him to go downstairs to the kitchen and I grab my phone on the way out of my bedroom in case he wants to stay down there a while. The Benadryl I took for my allergies is kicking in and I’m pretty sleepy.

0120: We’re back upstairs and Daniel hunkers down on my bed with his blankies. (Making him go back to his own bed is not a battle I’m choosing to fight when I’m feeling this crappy.) I put on a Viperkeeper video on Youtube and drift off to sleep.

0547: I’m woken up by the presence of a small child standing over my side of the bed and asking for a cookie. Fine. (This kid has a BMI of 13 so if he wants food these days, he gets it.) We go downstairs and I pray for Daniel to eat fast. He finishes quickly and I hand him his tablet, admonish him not to get up until my alarm goes off, and I go back to sleep.

0715: My sadistic alarm clock goes off and I drag myself out of bed. Daniel is already coming around the side of my bed to turn it off and I tell him to head to his room to get dressed. I grab my Jameson fleece and put it on because it is freezing in the house. The heat might have been on since 5 or 6 a.m. but it doesn’t seem to have made a difference.

0718: Next door in Daniel’s room, I monitor the dressing process. We take off his jammies, change his training pants, and I hand him clothes to put on for Picture Day (a navy blue polo shirt, a long-sleeved navy blue shirt to layer underneath, and jeans). Thankfully, he’s not feeling like messing around this morning and dresses quickly. I use part of the time he’s getting dressed to grab a cough drop off my desk.

0728: Daniel is dressed and I’ve had a chance to go to the bathroom so it’s time to head downstairs. I grab his glasses, a Windex wipe (for his glasses), his ID bracelet, his backpack, and his morning meds before limping down the stairs. My left knee is stiff and painful if I put weight on it so I’m predicting that today will be a day when I’ll be wanting a lot of Flexeril. Unfortunately, I can’t take it immediately because I’ve got a lot to do and the pill makes me a bit drowsy.

0734: Daniel is sitting at the table eating goldfish and drinking milk. I grab a spoon from the drawer and Daniel’s medicinal peanut butter jar (plain creamy peanut butter that we use for giving him his meds every day) from the pantry so I can give him his Adderall XR with a spoonful of the peanut butter. I’m thankful that he’s taking it without a fight now because it used to take my mom restraining him and me prying his jaws open to get him to take his meds. He takes the spoon from me and swallows it quickly so I give him 3 M&M’s for complying.

0736: Now that the kiddo is medicated, I pack his lunch. It’s pretty much the same every day and with the dry foods already in his lunch bag, I just have to add two cheese sticks, a banana, and his travel cup of juice.

0740: Daniel puts on his glasses and I put in his hearing aids. I thought I had brought his ID bracelet downstairs with me, but it’s not on the kitchen table with everything else. I limp back upstairs and find it next to the drying can for his hearing aids. I limp back downstairs and fasten it to him.

0746: Now that he has everything on besides his socks and shoes, I check his communication book to see if his teacher has anything to say. I fill out the back of the paper and pack the book into his backpack with his lunch and everything else.

0748: “Socks on, shoes on, Daniel.” While he puts his socks and shoes on, I head upstairs to grab my laundry from last night out of the dryer and put it on my Rubbermaid bin to fold once my bed is made and I have a big enough surface to work.

0750: Daniel is ready about 10 minutes before the bus arrives so I hand him his tablet and let him play after we get his jacket on.

0758: *beep beep* The bus is here (we get door-to-door transportation) and I step into my flip-flops before heading outside with him. I hand his backpack to the bus aide, give Daniel a kiss, tell him that I love him, and tell him to be *EXTRA* cute today. He gets on the bus and I head back into the house.

0806: My bed is made and I start folding my laundry. I only have three pairs of long pants so I have to do laundry a few times a week. I need to go to Fred Meyer or Kohl’s and pick up a couple more pairs.

0820: After putting all my laundry away, I toss on a long-sleeved black shirt and jeans. I sit down to journalize all of the goings-on this morning.

0845: I look down at my Fitbit Surge and see that it’s time to head to church for Mary’s Guild (women’s Bible study). I decide to finish blogging about the morning later on and stick my laptop in my laptop bag with all my Excel books. I am down the stairs, shoes are on, and am walking out the door when I realize that I forgot my crocheting. I limp upstairs and my mom happens to be on the 2nd floor landing. She asks me why I’m limping and I explain that my left knee is being spazzy. I grab my yarn, prayer shawl that is in-progress, and head back downstairs to leave. Before I leave the house, I grab two Babybel cheese rounds and put my coffee order into the $tarbux mobile app so it will be ready when I get there. (I cannot express how much I love the mobile app. It enables me to order ahead of time and then just walk in and pick up my order, completely forgoing the line all together.)

0853: I make it to $tarbux. Skagit PUD is still doing roadwork on Division Street and at the entrance to the back way out of my neighborhood so I am delayed by having to slow down for that. Thankfully, I was waved through the roadblock and do not have to stop for any length of time. I get smiles and waves from the baristas at $tarbux when I pick my drink up at the bar. I made a mental note to tip them well.

0903 I make it to church and walk into the fellowship hall. Several of the women and Helen, our rector, are already there and I get hugs from all of them. A couple of them comment on my froggy voice as we’re standing around getting our coffee and I explain that it’s probably allergies but it could be what Daniel had last week. Eventually, we sit down and share whatever food people have brought. This morning, there were grapes, nuts, and tangerines. We talk about anything and everything going on in our lives, in the community, the readings for Sunday, and whatever is relevant. Partway through, I start having the moving fibro pain in my legs and to avoid crying, I get up and walk around a bit, hoping that stretching out my legs will help.

1100: I bid my ladies “adieu” and drive to school. I decide to take the long way so I can get some prayer time in. Usually if I go this way, I pray the Trisagion but today’s prayer is just me begging God to make the pain go away and to help me persevere through until I can go home. I end up going through some wooded areas and am heartened to see that the storms from last weekend did not take all the leaves off the trees. The fall colors here remind me so much of how brilliant they were when I lived in Ohio from 2001 to 2003.

1115: I arrive at school and try to find a parking space near the front. No luck. I try not to grimace as I walk to the computer lab in Ford Hall to work on my Excel assessments. I log into my favorite computer and spread out across a couple workstations so I can listen to music and charge my laptop battery while I work. The assessments go relatively well and I finish a little before noon.

1200: I leave Ford Hall and head to the coffee shop in the student center where I get a wrap and a Coke for lunch. I have some time to kill before I meet with my conversation partner so I eat half of the wrap and work on typing up some of this entry. There are various people from CCF scattered around the student center having one-on-one mentoring meetings and they wave to me as they pass my table.

1230: I head to the International Student Office to meet up with my conversation partner. She tells me that she has had to drop one of her English classes, the one that required having a conversation partner, and she can no longer meet with me because of a new job. I smile nicely, tell her that it was nice to get a chance to get to know her, and wish her the best. I head back to the coffee shop and sit back down at my old table. I put my earbuds in and listen to music while working on this entry until one of the young women from CCF sits down at my table. We talk a little bit about ministry, Daniel, and I ask her some questions about the internship she is doing with her church. We hang out until I have to head back to Ford Hall to see my Excel professor during her office hours.

1330: I knock on the door of K, my Excel professor and she answers it once she is done meeting with the student in her office. I tell her that one of the online assessments fouled up and docked me points on last week’s chapter so she brings up the assessment, looks at it, looks at me, asks me to demonstrate something for her, and gives me full credit on that particular assessment. I thank her and walk back to my car.

1405: I get home from school, drop my laptop bag in my room, stick the other half of my wrap in the fridge, and wait for Daniel to get home. Usually, he gets out of school at 3 and home at 4; but because of parent-teacher conferences, they’re getting out early this week.

1415: Daniel is home. We head upstairs to take off the hearing aids, glasses, and ID bracelet. He settles on my bed with his tablet and I go let my mom know that I’m going to take a warm shower to see if it helps with the congestion and the fibro pain.

1445: I’m out of the shower and in my jammies. While I showered, Daniel had a banana for a snack downstairs with my mom. Mom and I talk about whether it would be a good idea for me to be at my grandma’s party this weekend (her 96th birthday is today) and we decide to play it by ear but that we probably will not have me and Daniel there so that I don’t give this cold to my grandma. We were also going to try having Daniel and me go see her today but that idea has been scrapped as well. Mom heads over to the assisted living facility to see her (she tries to go daily and we host dinner here almost every Sunday) and I curl up on my bed to blog while Daniel plays with his Legos.

1545: Cutie pie comes in and asks for “free fry” (french fries). This can be accomplished using a drive-thru so I can stay in my jammies. I tell him to get his socks and shoes on while I limp downstairs with my purse and let my dad know where we’re headed. As we’re leaving, the UPS man comes to the door and hands me two packages: one from Firmoo and one from Shutterfly. I am taken aback because I ordered the glasses from Firmoo on Friday and the cards from Shutterfly on Saturday night!

1550: We’re on our way! We drive to Burger King and get the kiddo some fries. I would usually try to extend the drive a little bit to give his tablet some time to charge but I am in serious pain by this point, so we just get his food and come home.

1640: We get home from our excursion and Daniel heads upstairs to commune with his tablet. I return to my spot on the bed and try to convince Homer (my parents’ grey kitty) to come and be my chest kitty. When he refuses to come when I call him, I go over and fetch him. He protests a little bit but soon begins to purr.

1730: Mom gets home from being with Grandma and we talk about her visit while I give Daniel his evening meds. He takes them again with no problem and receives a couple M&M’s. He goes upstairs to play in his room and I go back to my bed. The pain is worse than usual and the only thing I can think of that would cause it to be this bad is the weather systems moving through the area.

1830: I finally get to hit “publish” on this entry for the first time and I go to rouse Daniel to give him his shower. I find him curled up under his fleece SF Giants blankie. As much as I hate rousing him, he thrives on this routine and he needs a shower. He’s somewhat sleepy so I’m able to get him cleaned up quickly and we get him into his jammies. He heads downstairs for a snack and I follow him to get something for myself. I seem to have whatever respiratory crud Daniel had last week so I now understand his reluctance to eat or drink anything last Wednesday night. However, I have blood sugar issues so I need to eat *SOMETHING*. While he eats whatever is leftover from his lunch, I grab a banana and a Babybel cheese round. That should at least keep my blood sugar up and the protein from the cheese should keep me from getting hungry for a while.

1905: Daniel is back upstairs in his room and I retire to my room to watch TV. “The Big Bang Theory” is on TBS in syndication but I’m not particularly fond of the two episodes on right now so I switch to WGN and watch “Cops”. I also finally get to take some Flexeril now that I’m not going to be having to drive or make any serious parenting decisions in the next 12 hours.

2015: I stop hearing Daniel playing so I go check his room and find him asleep on his bed. He wakes up a little bit when he hears my footsteps and I stroke his head to get him to lie back down. I tuck him in with his blankies, give him a kiss, pray over him, turn out his light and leave his room. He’ll probably come climb up on my bed at some point in the middle of the night but it’s only been recently that we’ve gotten him to go to sleep in his own room for the first time since his hospitalization in March 2011.

2030: I grab my Accounting backpack and decide to take a look at the homework that is due on Tuesday. I’m caught up with Excel for the moment and I don’t want to end up in a situation where I’ve got to burn too much midnight oil to get everything done. Before I start looking at the homework, I email my professor about making an appointment for advising. I’m considering the pursuit of a certificate in Bookkeeping and I want to know what classes I actually have to take, given that I’ve already got a B.A. and part of a Master’s degree. (Is “First Year Experience” really a necessary class? Do I have to take “College Math” if I’ve passed Calculus?)

2230: I’ve lost myself in Accounting work. I decide to get some sleep and switch on the news after packing up my Accounting backpack. I’m falling asleep when Daniel comes in with his blankies and curls up with me…

{five favourites}: Miscellanea (LXXVIII)



“Cantus” by Connie Dover. This piece is so beautiful that it’s bringing me to tears, y’all!


This post from Kelly./strong> I don’t care what she says — Kelly is an exceptional mom.


This presidential debate “yoga” game. I definitely think doing this will be better than large quantities of alcohol in the long run.


“Immanuel” by David Wesley. If you like Peter Hollens and you like Christian worship music, you’ll like him.


“Build Your Kingdom Here” by Rend Collective. This is one of the songs I listen to when I need a pick-me-up.

Go love up Bonnie, DeBalino, and the others.

31 Days of Parenting Kiddos with Special Needs: Autism Speaks

31 Days of Parenting Kiddos with Special Needs

You know how I blogged on information literacy last week? (You didn’t read it? Go read it now. I’ll wait.) Well… I have an example of it now.

The website that is given out to every parent that gets an autism diagnosis for their kiddo is Autism Speaks. They’re the most vocal organization out there of all the resources on autism, they sponsor walks to raise money for research, and they’re all about managing autism/finding a cure etc. I was too shell-shocked to really read up on it when Daniel was diagnosed and instead focused more on learning about ABA because it was a way of working with him that seemed to reach him in ways that other things didn’t.

One small problem with the site: it’s run by neurotypical people and is aimed at making autistic people more like those who are neurotypical.

The problem with this: People with autism AREN’T neurotypical. It would be like putting someone in a room with speakers going at full volume with a million different sounds and then expecting them to carry out their life as normal. IT’S NOT THE WAY OUR BRAINS WORK!!!

A big problem that I have is that people act like autism is a deadly disease and that it’s incompatible with life. Seriously, I’m high-functioning (which we discovered AFTER Daniel was diagnosed) and my life is fine. Do I have to find ways to adapt to the world? Yes. I go into hiding after having to be social for an extended period of time and I tend to hyper-focus. I also have always taken what people say very literally and had to learn to distinguish between reality and hyperbole. Is my brain useful in this world? It is. I think my brain functioning in a slightly different way means that I have a way of seeing things and analyzing things that helps me and which can other people. Would it be that way if I wasn’t on the spectrum? No, and I think it would be boring.

After finding out what the signs for autism in girls are and discovering that I fit them, I changed my viewpoint quite a bit. Rather than hoping that ABA and other therapies would “fix” Daniel, I started thinking about what would help him to live in the world being the person God made him to be. I also eventually (like a month ago) stopped feeling like Daniel’s autism was a failure on my part. (And yes, I had been made to feel that way by a lot of people.)

Daniel never stopped being the kid he “used to be” — he has always been himself and will always be the kid he is. Instead, I need to work on myself and my expectations. I found this to be the case when I met with his teacher and two of his therapists today for my “fall family meeting” (a fancy-schmancy name for a parent-teacher conference) and they talked about how much a sweetie pie he was, how he interacts, how he participates so well, and just how much they love him. I used to freak out about him staying at grade level and now I’m more concerned with making sure that he learns to be kind and have made peace with him being whoever he ends up being as a student. (Kiddo *LOVES* school so I’m pretty sure he’ll catch up eventually.)

So how exactly does information literacy fit in? Well, they tell you to look at bias, manipulation, etc. as a means of determining which sources are more authoritative. Autism Speaks doesn’t (or at least didn’t for a while) have any autistic people on their board of directors or really in any high-up part of the organization which is a bit weird for an organization that purports to speak authoritatively on a condition.

I asked my dear friend Anita for an alternative and she recommended the Autistic Self-Advocacy Network instead.

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

31 Days of Parenting Kiddos with Special Needs

One thing I didn’t cover yesterday was the issue of when you get the news that your kid *DOES* have a condition that *IS* actually incompatible with life. Knowing that your kid will die the second they exit the womb is a scary thought and most people I know whose kids are diagnosed with anencephaly or some kind of similar condition have chosen to terminate the pregnancy. I cannot judge them for that decision because I don’t know what I would have done at the time if I was in their position.

Tommy Tighe, one of the people I follow on Twitter, faced this dilemma earlier this year when his fourth child was diagnosed with renal agenesis. He wrote about his experiences on Aleteia.Org and talked about the decision that he and his wife made to carry their child to term, knowing fully well that they were planning for a funeral instead of decorating a nursery.

I’m not condemning anyone who chose to end their pregnancy after a diagnosis like that but what Tommy wrote has made me think about what I would do in the situation.