It’s technically 12:06 a.m. on the 8th as I’m writing this but… today was kind of a crazy day with a doctor’s appointment (flu shot AND a pneumonia shot — my poor left arm and shoulder!, a meeting with my conversation partner at school, and me trying (in vain) to concentrate on my Excel classwork/homework so you get another “cheater post” on a blogger.
Why I’m spotlighting this blogger:Kelly is another one who seriously needs to move to northern Washington because I need her level of awesome in my life outside of blogging! We got to know each other through the “7 Quick Takes” link-up over on Jennifer Fulwiler’s blog and got to be good friends that way. (Kelly is now the hostest with the mostest of the link-up.) Her two youngest kiddos Fulton and Teddy have spinal muscular atrophy (SMA) and their level of care varies between the two of them. (Fulton is a weak Type 2 and Teddy is Type 2.) Both are in power chairs and it’s been entertaining to read about some of the more “interesting” ways that changes things. (Some parents put their kids in time out. Kelly parks them.) She has blogged very honestly and authentically about her life and how their diagnoses have changed things for her. Honestly, I wouldn’t even know about the existence of SMA if not for her blogging and being open about her life.
Some of the cool things she has done:
[-] Run 7 5K’s to raise funds and awareness for the condition
[-] Create a science and adventure club so that her boys can have something cool to do with other boys their age — I wish we lived nearby because I am the world’s biggest introvert and I would totally be there with Daniel! (Kelly’s son Fulton has suggested we travel there by jetpack. If only, Fulton. If only.)
Some fabulous posts on the subject that she’s written recently are here, here, here, and here.
And honestly, I love her not only makes me laugh when I *REALLY* need it and she keeps me organized, but also because she and her family have prayed me through so much in the last 5 years. There have been times when those prayers, as well as the emails from her, have been one of the few things that have kept me from being hospitalized with depression. I can’t put into words what those prayers and emails and her friendship have meant to me.
The hazards of sleeping in. Daniel’s quarterly ADHD appointment was yesterday and I somehow set my clock forward an hour while trying to turn off my alarm so I was an hour early getting dressed, getting my latté, and arriving at school to pick up the kid. Of course, I discovered this when I looked at my watch while signing him out… and had to tell the secretary (who was on the phone with his teacher) that I was an hour early and would be coming back an hour later to get him. (I ended up going home and doing accounting homework.) When I came back to get him, his incredibly awesome teacher managed not to laugh when she brought him out and I explained what had happened. I’m also very thankful that she came out personally to bring him to the office because other schools would just send an aide. (Then again, his classroom is right across from the office so it was a matter of just popping out of his classroom.)
Blown away. We managed to get what I thought was the first appointment after lunch because the waiting room and office were pretty empty. (I later learned that his pediatrician takes a late lunch.) Kiddo was in a relatively good mood because it was a school day (he would go to school seven days a week if we let him) and was unusually chill when Dr. Awesome and her medical student came in and talked to us. (As it was an autism appointment, she just needed to make sure the meds were working and continuing to be a blessing for Daniel instead of a curse.) He was totally happy with her until she wanted to take a listen to his lungs. He was not amenable to this but having her listen to his lungs was not negotiable, so kiddo ended up on my lap with me holding him and telling him over and over that she was not hurting him. Other than that, she was fine with just watching him play tablet, talking to me, and surreptitiously observing him.
The nurse had asked when we came in if I wanted my kiddo to have a flu shot and I said “yes” because having to come back again for it was not going to make me happy. Once Dr. Awesome and her student were out the door, two nurses came in and while one of them prepped, the other one explained the game plan to me: put the kid on the table and have me hold down his upper body while one nurse held down his legs and the other one gave him the shot. I’m not even sure that more than five seconds elapsed between me setting him on the table and them being done with the shot — they were that fast! (Then again, they do this all the time so they have a good system.) In any case, I was incredibly impressed and told them this.
Baseball!!! DIDJA HEAR ABOUT MY BOYS ANNIHILATING THE METS IN THE NL WILD CARD GAME?!?!!?!? DIDJA?!?!?!? DIDJA?!?!?! The trash-talking has already started in anticipation of their play-off games with the Cubs starting Friday.
My pretty notebook. Jenny of Unremarkable Files asked for pictures of my notebook. I aim to please so here you go, Jenny! I apologize that my lines aren’t straight — I’m drawing all those things freehand and I’m incapable of drawing a perfectly straight line.
Prerequisite take on the VP Debate. I didn’t watch the debate for obvious reasons (as in, I already know who I’m voting for) but I find it amusing that two of my friends who are on opposite sides of the political spectrum and who don’t know each other came up with the same suggestion: each candidate has a shock collar and gets shocked every time they interrupt the other candidate or the moderator. Shocks also happen if they go over their allotted speaking time. THAT would be entertaining!
Another friend (completely unrelated to the other two) suggested that the moderator should get a taser. I’m thinking I like this one better?
You mean my college education is actually a good thing? I saw this story on the news a few days ago and it reiterates why a college degree or at least *SOME* form of post-secondary credential is essential. It doesn’t necessarily have to be a bachelor’s degree but at least some kind of specialized study is needed. So, if you’re going to claim that “not every kid needs to go to college”, think again. 😀
As for my “useless” degree in Religious Studies, it taught me how to learn, how to find research (a skill which I have heard my professors here say is sorely lacking across the board in students from homeschoolers to public schoolers these days), and proves to employers that I can stick something out long-term. If I was still at the import brokerage in Montana, I’d be eligible for management training simply *BECAUSE* I have a bachelor’s degree.
Choosing to do this challenge during this particular October was kind of a crazy idea because I’m currently juggling school, being a mom, my own 3+ times a week attempts at blogging, and making sure all the I’s are dotted/T’s crossed for Daniel. (That last one is separate from being a mom because it’s another full-time job on top of basic parenting.) Knowing this, I built in some “cheater” topics for busy days/weeks and one of them is spotlighting bloggers who have kiddos with special needs. There are some bloggers who were complete no-brainers in terms of inclusion: Mary of Passionate Perseverance, Kelly of This Ain’t the Lyceum!, Rebecca of Backwards in High Heels, Kathleen of So Much to Say…, Cammie of Beyond Pearls, and Sarah of Wifeytini. I’m going to spotlight Mary today and save the rest for other times!
Why I’m spotlighting this blogger:Mary is getting spotlighted because I wish she lived nearby as she is just awesome beyond words!!! (If you don’t believe me, read this post put together by a mutual friend. The author was hoping to get 7 things about Mary to post for 7 Quick Takes but got WAAAAAY more because so many of us wanted to share about her.)
Her daughter Courtney had seizures from infancy onward until she passed away on December 27, 2014 at the age of 22. She spent her life in a wheelchair, receiving tube feedings, and giving her parents and older brother scares like nothing else. I would have been the most bitter and angry person if this had been my life because Court’s level of care was so intense… and Mary *TOTALLY* isn’t. She has the same sense of gallows humor that I do, she went out of her way to encourage mamas like me even when Courtney wasn’t doing well or even in the weeks and months after Court’s passing, she made sure that Court was always dressed to the nines (we’re talking better clothes and outfits than I will ever hope to be able to put together), she chose to be authentic about what she was dealing with daily with Court and how it’s all OK (even when it absolutely sucks in the moment) because love ultimately wins, and she’s now writing books and speaking about her experiences in parenting Courtney. (If you’re in the DC area and need a pro-life speaker, get in touch with her NOW. I mean it.) After Court’s passing, she became the liturgical coordinator at her church which allowed her to be present with grieving families as they were dealing with a profoundly dark time in their lives… which is amazing because she was still dealing with her own grief. She recently made the decision to quit her liturgical coordinator job and is now writing and speaking on life with Court.
Seriously, I will be hugging her and probably bawling my eyes out if we ever get a chance to meet in person because she has been such a support to me (we’ve had Facebook chats while sitting in ER bays with children who seem to enjoy giving us scares), she has done vlogs where she encourages other mamas of special kids (with Courtney in the background making Chewbacca noises), and she just radiates happiness in her faith.
Looking out my window… dark. It was allegedly 70F but felt colder. It’s down in the 40’s right now.
I am thinking… about what to write tonight for the Write 31 Days challenge.
I am thankful… that my boys (the Giants) clinched a play-off spot. (Yeah yeah yeah… the Dodgers clinched the NL West but I don’t give a crap about that.)
I am wearing… jammies. Church clothes were my indigo shirt, black slacks, my black cardigan, and black flats. I traded the flats and slacks for jeans and a hoodie after church.
I am creating… Excel files to submit to my Excel teacher.
It’s interesting that this covers the month of October because I found out I was pregnant with the kidlet on October 11, 2008. It was simultaneously a joyful and terrifying thing. 🙂 I was due around Father’s Day 2009 and it seemed like it was going to be a semi-normal pregnancy… until my hands started swelling in March 2009 and strange symptoms started happening. I had no idea that I was going to have to have an emergency c-section at 29.5 weeks gestation because of Class II HELLP Syndrome and that Daniel’s birth weight was going to make my 3 lb 12 oz. one seem gigantic. (Kiddo weighed 1 lb 15 oz. and was 14 1/4 inches long.) I think it’s probably good that God didn’t let me in on that little fact when Jon and I decided to try for a baby because I can *TOTALLY* see myself pulling a Jonah and figuratively fleeing to Tarshish!
Daniel was pretty tiny and he did have a lot of growing to do… but he is definitely *MY* child because he ignored the memo on all of this and decided that 3-4 months in the hospital was a little too long to hang out there. He came home on his 2 month birthday and did not require oxygen. He did have an inguinal hernia that we eventually had repaired (once he was old enough for anethesia) and ROP but that corrected itself as well.
While he was as fierce as I am about overcoming things, he did unfortunately have a 50% developmental delay and we started him in physical therapy at 13 months old, occupational therapy at 17 months old, and speech therapy a little after he turned 2 years old. He didn’t sit up until he was a little over a year and a half old and didn’t take his first independent steps until he was 2 1/2. He is only now really using a pencil well with special grips and is finally developing speech and sentence structure. The good thing is that when something developmental comes for him, it takes off like wildfire so I’m thinking he’ll probably be talking somewhat well by his next birthday?
His immune system was also compromised because of prematurity and that unfortunately meant that he could not fight off basic infections, especially respiratory ones. The scariest one was probably the one that landed him on a ventilator for a week and a half in the PICU at UC Davis Medical Center followed by a bit more than a week on the pediatric unit. We’ve also seen quite a bit of time in various pediatric ER bays at UCD and had a couple more smaller hospitalizations, the most recent one being a week-long one three years ago.
He was diagnosed with autism at age 2 1/2 and started school in an ABA preschool class at age 3. We added in-home ABA therapies a year later. Four years later, he is still in an autism-specific class but we’re OK with that and he seems to be thriving with it. Let’s just say that I have become almost an expert on IEP’s. 🙂
A year ago, his pediatric neurologist diagnosed him with ADHD and put him on Adderall. While this is not a popular decision in some of the circles in which I travel (because, you know, ADHD *TOTALLY* isn’t a thing… except when you have a kid with no off switch), it’s been a lifesaver for us and for Daniel. He can sit down to play and focus on what he is doing, freeing me up to take care of my own school, do housework, take a shower, eat a meal sitting down… We’ve seen a child psychiatrist who met with us monthly and his pediatrician up here in Washington sees us regularly as well as his Adderall requires a special prescription and in-depth supervision.
So what would you like me to write about this month? Leave me a comment to let me know and I’ll see what I can do. 🙂
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.)
Apparently, I might be able to #bulletjournal? On Monday, my Accounting teacher collected all of our notebooks before giving us our homework quiz so she could grade our outlines (for those who decided to do theirs on looseleaf paper, she collected those) and upon seeing my notebook, someone blurted out that my notes were so pretty and precise and that I must be an engineer. Considering that I can barely draw a straight line even with the help of a ruler, I was suitably honored to hear this. #egostroked
Apparently, I might be able to do a #bulletjournal someday… if the #bujo can be in pencil. 🙂
A song for today. I went to the chapel service held by the Campus Christian Fellowship this week (think Intervarsity or Cru) and this song was sung. I’m kind of in love with it.
Proud of my home state. Because of the accounts scandal at Wells Fargo, California’s State Treasurer John Chiang has suspended business relationships with them for the state because he feels they should be punished for their wrongdoing. Considering they’re a crappy bank to use (I just ended my banking relationship with them after 18 years because of bad behavior on their part in the last few years), I’m happy that he’s taking a stand against them instead of being bowed by them because they are kind of a goliath entity in the financial world.
An interesting suggestion. Elizabeth Scalia of Aleteia.Org has an interesting suggestion: read aloud to someone. Even though I can read by myself now, it’s fun to be able to sit and listen and crochet while listening to someone read.
*facepalm*This personal anecdote about racism has been making the rounds on Facebook. My question to y’all: would you have stepped out of your privilege and comfort zone and stood up on behalf of Ashley (the protagonist)?
1.) His failure to actually research the kid’s vaccine reaction (and it would have been very well-documented if he had done so) if he had another one. I know from my own kid that having a paper trail is essential and having all of the records is vital if your kid has any problems, so much so that one specialist will not rule on anything unless they’ve seen all the records. I have never had a doctor take my word for it on almost anything related to Daniel — everything has to be backed up and it is considered to have never happened if it isn’t documented. This means that he would have needed records from the kid’s prior physician, ER records, or urgent care records from when the mom got the kid treatment for the vaccine reaction… because what mother wouldn’t take their kid in if they were having a reaction like that?!?!?
2.) By excusing the kid from future vaccines (and not just the one to which he reacted badly), he put both the kid at risk of contracting a disease that could have landed him in the hospital or killed him as well as anyone else who can’t be vaccinated for health reasons. One of the reason that they started requiring such a strict policy in California is that there were outbreaks of diseases like pertussis (for which you cannot vaccinate infants) and measles in the state that could have been prevented if parents hadn’t claimed phony “conscience” reasons for not vaccinating themselves or their kids. Having been in this situation, it is *HORRIFICALLY PAINFUL* emotionally to have to watch your kid suffer to breathe or to have your kid end up with a horrible side effect from a hospital stay. I know I would be angry beyond words and pondering a lawsuit if Daniel had gotten something like pertussis as a baby because someone unvaccinated (for no rational reason) was in the waiting room with him and Daniel died as a result. THIS ACTUALLY HAPPENED IN LOS ANGELES COUNTY IN 2010!!!
3.) For the love of all things holy, IT HAS BEEN PROVEN BEYOND A REASONABLE DOUBT THAT VACCINES DO NOT CAUSE AUTISM. Dr. Andrew Wakefield lied and his lie was heinous enough (he spread false information for his own gain) that The Lancet had to retract what was written (a big deal because lawsuits had been decided using the false information which created an entirely new headache for the legal system in the UK and the US) and his name was stricken from the British Medical Record (a.k.a. he lost his license to practice medicine in the UK). There is a lovely infographic which gives all of this information PLUS links.
4.) After one appointment, the child claimed he had been hit in the head by a hammer and Dr. Sears did not report it to CPS. He is a mandated reporter and if he heard something like this, he is required by the state of California (and every state in the nation) to report this to CPS and do an in-depth evaluation. He didn’t. That is a serious breach of protocol and could mean that the child (if he was being truthful) could be an abusive home and in danger. That’s lawsuit material right there.
An interesting response detailing why he’s being charged with gross negligence is here.
And yes, I know that this was not a quick take but I felt like this explanation needed to be presented. 🙂
