7 Quick Takes: More Asthma Exacerbation Edition

7 Quick Takes

— 1 —

Sigh… Trick-or-treating on my cul-de-sac almost killed me because of asthma exacerbation (thank God Daniel only wanted to do five houses!) and I had to stay home from class on Tuesday to rest my lungs. I hate missing class but I also didn’t want to be puking from the asthma attack I would get from walking to the classroom from my car. Thankfully, it wasn’t a quiz day so I didn’t lose points for being absent.

— 2 —

World Series. My back-up boys have prevailed and Cleveland is back to stinking at sports! My only regret is that the Cubs didn’t sweep them; but at least they triumphed in Game 7 while playing *IN* Cleveland. (For those who are wondering, I hate all Cleveland sports teams and root against them at every turn. Thank various seminary classmates and obnoxious bloggers for this one.) Here’s hoping this is the beginning of some baseball dominance for the Cubs! They definitely deserve it. I’m so excited for my Illinois friends who are headed to a victory parade that has been a long time in coming. 🙂

And seriously, the rain delay was a joke. These men are being paid millions of dollars — if volunteer softball teams can play in the rain and football teams can play in -20F weather with blowing snow, baseball players can man up and play in the rain! I mean, are they going to melt?

— 3 —

The Write 31 Days challenge. I have prevailed over the Write 31 Days challenge! I need to do one more post aggregating all of the resources I linked but I’m glad I managed to write every day in October, even when I really didn’t want to write or when I was bogged down with homework.

— 4 —

Daniel and ENT fun. The munchkin had an early ENT appointment on Wednesday and was pretty good until we had to restrain him so that the doctor could examine his ears under the microscope. (To be fair, I’d hate to be restrained and have someone poking things into various orifices so I don’t really blame him.) He’s got serious ear wax preventing them from being able to do a decent exam and they couldn’t get it out so they’re going to have to sedate him to clean it out. This should be… interesting.

— 5 —

Election blah. I am so sick of the election that I’m pausing and then fast-forwarding through anything election-related on TV. I voted almost three weeks ago because everyone registered in Washington gets their ballot in the mail and they can choose to mail it back or drop it off in person. Seriously, there should be some chip in the ballot that automatically gets rid of political ads and all political content from TV once a person votes because this is too much.

— 6 —

Interesting… A small town in Macedonia has become a hub for pro-Trump websites. It’s a bit disturbing that Macedonian people are profiting off our electoral dysfunction.

— 7 —

*facepalm* I heard from one of my favorite $tarbux baristas that she had people whining about not having eggnog lattés on Halloween and that there’s some controversy about the green pre-holidays cup. Seriously?!?!?!?!? Eggnog lattés are foul-tasting and it’s not like it’s even Advent yet, let alone Christmas.

Some people seriously destroy my faith in humanity and I’m not even talking about Trump supporters with this one!

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

31 Days of Parenting Kiddos with Special Needs: Vaccines and Autism

31 Days of Parenting Kiddos with Special Needs

I saved this particularly scary topic (at least for some people) for Halloween. For those with a delicate constitution who are going to be easily offended by me disagreeing with them, I recommend something more soothing to read… like maybe a science book! For everyone else, go look under the cut.

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31 Days of Parenting Kiddos with Special Needs: Food Issues

31 Days of Parenting Kiddos with Special Needs

If you have a kid who was born prematurely, there’s a good chance that they have some texture issues in their mouth. Add in autism or sensory processing disorders (SPD) and you have a kid who refuses to eat what you put in front of them. As frustrating as this is, here’s how I’ve coped.

[+] Supplement with Pediasure or Boost. It is almost impossible to get enough calories into Daniel so that he can gain weight. A nutritionist put him on Pediasure when he was 2 years old and they were finally able to plot him on the growth chart. It’s not ideal for kids to get most of their calories that way but it sure does help.

[+] Gummy vitamins. If your kid likes fruit snacks, this is a way to get extra vitamins in. Again, it’s not ideal but it works.

[+] Pick your battles. Your kid only eats food shaped like a dinosaur? Congratulations! They’re typical. Order a dinosaur-shaped cookie cutter for sandwiches, stock up on those chicken nuggets, and explain that the broccoli on their plate are palm trees. No kid is perfect and it’s likely that they won’t eat what you put in front of them every time. If it is making mealtimes into battles, rethink your strategy.

[+] Find whatever you can get your kid to ingest and stick with it. Daniel has his own peanut butter jar because we use it to give him his meds and because the kid eats it out out the jar with a spoon! We allow it because it’s extra fat and calories for him, two things that my painfully thin kid needs! He loves whole milk so that’s why we buy. (I find that my crabby gut tolerates whole milk while nonfat milk makes it stabby. Lactose-free milk is twice as expensive which is why it isn’t in the budget.) We go through tons of bananas and shortbread cookies because that’s what he likes. Ditto with goldfish, cheese sticks (calcium and protein!), fruit snacks, apple juice.

[+] Model good habits. If your kids see you eating your broccoli, they are more likely to try it.

31 Days of Parenting Kiddos with Special Needs: Blogger Spotlight on Cammie of “Beyond Pearls”

31 Days of Parenting Kiddos with Special Needs

It’s another busy homework evening (Accounting) so here’s a blogger spotlight post to give you something to ponder.

Why I’m spotlighting this blogger: Cammie has been a friend of mine for probably 4 years now and we commiserate with each other about our kids’ conditions. Her daughter Sadie has ADHD, Maggie is severely autistic, and her boys have their own issues. She recently had her daughter Tessie and she’s got what seems to be some vision and hearing issues.

Cammie is amazing. Her kids have probably 50 appointments per month with all their doctor’s appointments and therapies… and she manages to juggle it all. There are also a number of food allergies and sensitivities between all the kids and she has to a huge amount of cooking from scratch. I can barely cope with one kid with special needs and she has five of them!

The woman seriously amazes me and I think you need to go check her out!

31 Days of Parenting Kiddos with Special Needs: Sleep Issues

31 Days of Parenting Kiddos with Special Needs

Parents with kids on the spectrum know how much “fun” it is to have to get those kiddos to bed at times and to keep them in bed when they are having sleep disturbances. Parents with kids who have ADHD deal with kids who have no off-switch regardless of how tired they are. Parents whose kids have both (like mine) are in a special kind of hell.

Here is what I’ve found that helps:

[+] Routines: It really does help to be able to direct your kiddo to the next thing on the list. Ours is pretty much the same as Daniel Tiger’s: bathtime, pj’s, snack, brush teeth, go to sleep. (We have this book as well.)

[+] A consistent schedule: This goes along with the routine. Everything happens at pretty much the same time every night, making it easy when I have choir practice or something in the evening and my parents are doing bedtime with Daniel.

[+] Melatonin: We give it to the kidlet along with his evening meds (Clonidine). It’s very easily found in the vitamin section of your local supermarket or drug store.

Daniel does still have nights where he’s wakeful but these three things tend to work pretty well for us.

31 Days of Parenting Kiddos with Special Needs: Inspiration Pr0n

31 Days of Parenting Kiddos with Special Needs

Inspiration pr0n is this:

Inspiration pr0n is all the posts of disabled people doing normal things like working out, and then “what’s your excuse” or praising them for the ordinary. It’s also the high school kids who vote the girl with Down Syndrome homecoming queen so that they can go viral on social media, but they would never have lunch or hang out with her in real life. It’s the objectification (that’s why it’s pr0n) or disabled people to make other people feel good about themselves.

It’s not wrong to be inspired by someone being resilient or someone doing something pretty amazing. The problem comes when you’re using someone else’s situation to make yourself look more tolerant, more humble, or more giving. People are not made to be used.

You also do not get to make comments about how much someone else’s life must stink. They might have a disability of some kind but that does not mean that their life is automatically horrible.

31 Days of Parenting Kiddos with Special Needs: A Re-Blogged Guest Post

31 Days of Parenting Kiddos with Special Needs

I’m up to my eyeballs in Excel assessments so you’re getting a re-blog of a guest post I wrote for Laura of Coptic Dad and Mom. Enjoy!

I probably should give you some background on why Laura thinks I’m qualified to talk about this.

My son Daniel was born at 29.5 weeks when I developed HELLP Syndrome. (The story of his birth is here.) Preemies tend to have delays because of their gestation; but Daniel did not even hit milestones when his adjusted age was factored in and he was diagnosed with global developmental delays at 18 months old. When he was 2 1/2 years old, we were at a developmental pediatrics appointment when they told me that he was very clearly autistic. My former husband was thanking God upon hearing this news because it explained so much. I, on the other hand, barely made it to the car before I started sobbing. The ADOS was administered a week later and Daniel received a diagnosis of mild/moderate autism. Appointments for glasses and hearing aids followed later that year. Last fall, his neurologist added an ADHD diagnosis to the mix and put him on Adderall which was life-changing for him and for us because it meant that he could sit still and play for longer stretches of time and other ADHD meds allowed him to calm down at night. At 7 years old, he is *FINALLY* starting to talk, he still is not potty-trained, and he attends a special autism program for school.

Additionally, being premature means that his immune system was very compromised until he turned 5 years old and we got to know the pediatric emergency room, pediatrics ward, and pediatric intensive care unit (PICU) at UC Davis Medical Center very well in the three years we lived near Sacramento. I spent over a month of my life sleeping in the PICU and the pediatrics ward during that time when Daniel would get RSV and I still keep spare underwear, toiletries, and a 24-hour supply of my medication in my laptop bag so that I am prepared for another hospital stay if it happens. I also got to be on a first name basis with some of the attending physicians at the pediatric emergency room because of all of our trips for respiratory issues and febrile seizures.

So yes, maybe I am a bit qualified. 🙂

I am not going to lie — parenting a kid with special needs can be very hard. I frequently describe life with Daniel as having multiple children at different developmental levels combined into one child and there are days where I’m banging my head against the wall because I feel like I am failing as a mom. Other days, things go smoother than expected and I feel like I *might* actually know what I am doing. Every kid is different and what I can tell you are things that have worked well for me as well as things that I wish I could say or could have said to people earlier in my adventures in parenting Daniel. Given that Daniel is autistic, many of my examples will involve that particular condition though they can apply to a number of other conditions that cause developmental delays.

For the parents:

[+] It is OK to be upset when you get a hard diagnosis for your child and it is normal to feel overwhelmed. My Catholic friends talk about their jobs as parents being to help their kids to heaven and when you get a diagnosis of autism or Down Syndrome, that gets a lot more complicated. I think as parents, we want the best life possible for our kids and it is incredibly difficult when we learn that this won’t necessarily happen. We also have images in our minds of things like introducing our son to their first roller coaster or walking our daughter down the aisle. These things may still be possible, but getting to that point will be harder than it would have otherwise been.

[+] Love the kid you have. Your kid may not fulfill all your dreams for them but they are still yours. Find things to do with them that fit where they are developmentally and in terms of abilities. Daniel’s former physical therapist used to tell me that “[they] treat the kids, not their diagnoses.” Your kiddo is more than a cerebral palsy diagnosis or an autism diagnosis — they are a beautiful child of the King of Kings who is loved by God more passionately than any mother or father can love them. I can also tell you from my experience that every milestone they hit will be ten times greater than it would normally be because you know the blood, sweat, and tears it took to get there.

[+] Build a support network. This network includes not only your kid’s therapists but also people who have children with the same diagnosis. Daniel’s preschool had “Picnic on the Green” twice a year and all of the parents of the kids in the ABA (autism) class usually ended up having their play area to ourselves as the parents of all of the other preschoolers generally congregated on the other playground. This meant that we had a small and intimate group every time and it became a time to talk to each other about what worked for our kids, how we were struggling or thriving as parents, and a chance to get to know all of them better. Given how completely shy and introverted I am, I probably would not have joined a support group on my own and I appreciated having this community. Your support network should also include people who you trust to watch your kid and who are willing to learn how to work with them as well as websites for any groups that deal with your child’s diagnosis. I personally found that the Facebook for the MIND Institute was a really good place to go to for information on how to work with Daniel.

[+] Support your spouse. I say this one from personal experience: having a kiddo with special needs can put a serious strain on your marriage; and unless both of you are supporting the other, it will not be good. This means that if the wife is home with the child all day, the husband needs to do bathtime or bedtime with them, learn how to work with them effectively in case the wife needs to go somewhere, and needs to give her at least a small break when he gets home from work so she can shower, catch up on housework, or stare at a wall for 10 minutes. I am not saying this to be a feminist — I remember the fatigue from having Daniel at home by myself for 16 hours on my former husband’s busiest days and not getting a break unless he decided to take a nap.

[+] Find what works for your family. Every kid is different and not everything works the same for them. We found that keeping our stroller for Daniel until he was almost 6 years old worked well for when I was headed to an appointment by myself because then I could strap him in and not have to worry about him running into traffic while I grabbed the Binders of Fun from the car or locked the doors. When I would travel alone with him to visit my parents in northern California, that stroller meant that I might be able to use a public bathroom without him running away or getting into things.

[+] Have a sense of humor. Life is too short to be serious and sometimes, you just need to laugh at the absurdity of a situation. The name “Binders of Fun” came out of the time when I went to register Daniel for kindergarten and did not have all the documents that I needed because the special education people had not told me what I had to bring. After dropping Daniel and my former husband at home, I grabbed the two binders of paperwork, went back to the school, and said something along the lines of, “OK… I have the Binders of Fun. What do you guys need?” The school secretary and the school psychologist laughed and those two (now three) binders of paperwork were christened “the Binders of Fun”.

For the community:

[+] Please don’t compare our kids to yours. Nothing is as soul-crushing as hearing someone say, “Your child started walking at 2.5 years old? *MINE* was walking at ten months old!” We are already quite aware of how delayed our child is or of what limitations they have. We really do *NOT* need someone to remind us. Instead, please celebrate our kids’ milestones with us because you probably do not see the amount of work it took to get there.

[+] Please remove the word “retarded” from your vocabulary. There are few things that are more hurtful than someone describing my child as “retarded” or someone using the word in my presence to describe the ridiculous actions of another person. There *ARE* better and more specific words to use. Please find them.

[+] Unless you are parenting a child with our child’s diagnosis or you happen to be a researcher on that particular subject, please do not give us advice unless we specifically ask for it. I have pondered creating a shirt that reads “Yes, my child is autistic. Yes, we vaccinated him. No, he is not on a gluten-free diet. Please go away.” The reason: I have had so many people come up to me and tell me about how my child’s autism was caused by me vaccinating him, putting him on a gluten-free diet would cure him. My response to this is to usually just stare at you as I try to summon up some polite words to tell you that you have no idea what you are talking about and you are telling me that the thing that makes my child unique is my fault. Vaccines do not cause autism (Daniel’s is genetic), going gluten-free does not work for many children, and autism is not a condition with a cure — it is a neurological condition that affects the way you process sensory information.

Also along these lines, please do not criticize any decisions we make about how we are choosing to deal with our child’s diagnosis unless it specifically endangers them. I have had many people berate me about why I am not homeschooling Daniel, why I have not put him on the GAPS diet, why I have not put him in an institution to make my life easier… (I am not kidding about that last one.) I lack the expertise and patience to effectively homeschool Daniel, I want him to be socialized and learn how to interact in the real world, and I want him to learn how to live independently. Please help me to do this and do not criticize me for how I choose to go about it.

[+] Please speak to our child normally. Daniel’s receptive communication (his understanding of language) is completely normal — it is only his speech that is delayed. This means that asking me nastily in front of him if he understands English is quite insulting to him and to me. He understands you when you say “hi”, he knows you are talking about him, and if you put out your hand for him to shake, he will shake it. When he was younger and we lived near Sacramento, a couple of the employees at the local Trader Joe’s would have one-sided conversations with him or make race car noises as they were pushing the shopping cart to the car. Those times always made me smile because they were including him and treating him like a normal kid.

[+] Please feel free to ask us polite questions about what you are seeing or ask us if we need help. Until Daniel learned to walk, I had to carry him everywhere and or stick him in his stroller. I remember a shopping trip two years ago when I dropped my wallet while trying to keep ahold of Daniel and pay for groceries. The lovely cashier at Trader Joe’s grabbed another employee to hold on to Daniel, helped me pick everything up, and made sure I had help getting to my car. Other people have opened doors for me when I had Daniel in the stroller, have offered to carry something to my car, or have held a shopping cart still so I could lift Daniel into it. (I am only about 5’1″ tall so putting him in a shopping cart requires lifting him up almost over my shoulders.) As far as questions, asking me politely if he is autistic is not insulting nor is asking me why I am doing something with him a certain way. I have no problem explaining why I am touching his mouth to get him to speak or signing “all done” to get him to move on from something.

This is just the tip of the iceberg on my experiences with parenting Daniel and I am more than willing to answer questions that people have. My email address is jen[at]grace-filled[dot]net and I am usually good (most times fanatical) about returning emails. 🙂