For the next couple days, I’m going to focus on the conditions Daniel has that put him in the special needs category. The first one will be “developmental delays”.
What this actually means: His development is behind what experts mostly agree are accepted milestones for development. In Daniel’s case, for example, he did not roll over until a certain point, did not sit up until 20 months old, was not crawling until around that time, and did not walk until he was 2 1/2 years old. We thought these were probably due to his prematurity (29.5 weeks gestation at birth) but genetic tests done 5 years ago are suggesting that they might be from the same genetic microdeletions that they think caused his autism.
How we treat it: Kiddo has been in physical therapy on and off since he was 13 months old, occupational therapy on and off since he was 16-17 months old, speech therapy since age 2.
How you can help out friends with kids in the same situation: Please refrain from making comments like, “[kid’s name] isn’t doing [insert milestone] yet?!?!? MY child did [insert milestone] at [insert insanely early age].” Believe me, we’re aware of how far behind our kid is and that comment is really rude.
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. 🙂
One of my favorite things… Homer being a snuggly kitteh.
I am wearing… jammies. Church clothes today were a black cardigan and jeans from Kohl’s, a black t-shirt from Old Navy, and my black flats. I ditched the flats and cardigan after church. I was also wearing my 49’ers necklace that Rebecca made for me so I could rep my boys at church.
Shared Quote… I seriously feel like this is a fitting quote that refers to everyone who tells me that Daniel’s autism is due to us vaccinating him. (For the 1500th time, vaccines do not cause autism.) Let’s also not even get into the political applications of it…
A moment from my day… I’m enjoying the various videos on bullet journals out there. I would love to have one but I am too much of a perfectionist and I lack the ability to draw a straight line.
Looking out my window… dark. We had a wonderful rainy weekend, some sun yesterday, more rain today, and I think we’re clearing up again.
I am thinking… about my Excel/Access class and how I’m going to structure my week to get in the work I need to get done.
I am thankful… that my first Practical Accounting class went well today. It seems like it will be a fun class.
One of my favorite things… Daniel not being wired and going to sleep without a fight. That isn’t going to happen tonight. 🙁 On the other hand, he had a good day of school today.
I am wearing… jammies. My outfit today was my charcoal shirt from Old Navy, jeans from Kohl’s, running shoes from (now defunct) Sport Authority, and my blue hoodie from Costco.
I am creating… this entry. 🙂
I am watching… COPS. It’s an addiction.
I am hoping… the Giants make it into the wild card game.
I am learning… about accounting basics and balance sheets.
In my kitchen… Dad made a fabulous tri-tip yesterday for Sunday dinner.
In the school room… Daniel continues to have a fabulous time in his class.
Post Script…
Shared Quote… I saw this on Facebook and it seemed appropriate. (Artwork done by Lori Hetteen.)
A moment from my day… One of my favorite songs to use when working with Confirmation kids.
Closing Notes: I am honestly disgusted that Ashley Madison (the dating site for lechers has a commercial on DISH Network’s non-local channels. Its existence is horrible in the first place but encouraging people to step out on their significant others is evil.
Looking out my window… sunny and in the 70’s. It was cold enough in the house this morning that I had a hoodie on over my jammies while getting Daniel ready for school and on the bus!
I am thinking… about the classes I’m going to try and take this fall.
I am thankful… for a wonderful alto part in the anthem we sang for the offertory yesterday. It is so rare to find one this good in regular choral music.
One of my favorite things… my iced grande vanilla latté from $tarbux.
I am wearing… a green striped shirt and jeans. I’m barefoot as usual.
I am creating… various things with yarn.
I am listening to… one of the classical channels on Dish Network. (I think it’s Ensemble?)
I am hoping… to get all the application and registration stuff done in time for Fall Quarter.
I am learning… what my stomach will and will not allow me to eat. IBS stinks!
In my kitchen… my mom made beef burgundy yesterday and we ate it over some squash that my aunt brought. Dessert was plum clafouti and ice cream.
In the school room… Daniel continues to enjoy school.
Post Script… I am totally *NOT* surprised that vaccine critic Dr. Robert Sears is being charged with gross negligence and about to lose his license to practice medicine. Seriously, why would you trust a doctor that does not do his due diligence and do something as simple as REQUEST THE FREAKING RECORDS for a kid he is about to exempt from vaccines, endangering the life of this kid (for whom there is no proof that he actually had the problematic reaction in question) and the rest of us?
Seriously, I cannot understand the complete stupidity of some people.
Shared Quote… This isn’t a quote but an observation. My parish has two congregations sharing a building and we’ve been worshiping together for most of the summer, which means that worship is in both English and Spanish. Yesterday, our first hymn was “Amazing Grace” which is “Sublime Gracia” in Spanish. I find the idea of grace being “sublime” to be an interesting thought. 🙂
A moment from my day… One of my favorite classical pieces — the Bach: Concerto for Two Pianos in C major BWV 1061 (Vivace). I will never have advanced enough piano skills to play even one of the parts but I love the piece. It showcases the intricacy of Bach’s music and why he is the composer whose music I go to mentally when I need a happy place.
Closing Notes: I came across this on Facebook and I recommend checking it out as the pictures of the athletes in their native dress are stunning.
Looking out my window… dark. It was lovely and in the 60’s with a minor rainstorm in the afternoon. It’s so wonderful after a week of humidity and temps in the 80’s.
I am thinking… about all the calls I have to make tomorrow to structure my week around Daniel’s school schedule as his bus transportation seems to be messed up.
I am thankful… for my church and the Spanish ministry to whom a bunch of school supplies were donated and for the people who offered to buy backpacks for the kids who need them. It was also wonderful watching Rev. Helen kneeling in front of the non-Communing kids at the altar rail and giving them the best blessing she could in Spanish. She is an asset to us in many ways.
One of my favorite things… being able to breathe normally. I miss it with this stupid asthma exacerbation.
I am wearing… jammies. Church was my indigo shirt from Fred Meyer, black capris from Kohl’s, and black flats from the Naturalizer website.. I exchanged the shirt and the flats for my blue-green shirt and black flip-flops from Old Navy.
I am creating… a prayer shawl on one of my hooks.
I am reading…Just Desserts by G.A. McKevvett.
I am hoping… I don’t have too much of a problem getting a follow-up appointment this week after my ER visit on Thursday. I’m still having asthma issues and I need to talk about my med list.
I am learning… the ropes of getting Daniel’s services up here.
In my kitchen… we had Sunday dinner here with my uncle and my grandma so we had pork chops, chopped salad, mixed veggies, corn on the cob, and apple pie for dessert.
In the school room… Daniel starts back on Tuesday and I’m trying to get his transportation sitch resolved.
Post Script… I wanted to share this for my musically-inclined friends.
Shared Quote… “I find that when I think I am asking God to forgive me I am often in reality…asking Him not to forgive me but to excuse me. But there is all the difference in the world between forgiving and excusing. Forgiveness says ‘Yes, you have done this thing, but I accept your apology…’ But excusing says ‘I see that you couldn’t help it or didn’t mean it; you weren’t really to blame.’ …And if we forget this, we shall go away imagining that we have repented and been forgiven when all that has really happened is that we have satisfied ourselves with our own excuses. They may be very bad excuses; we are all too easily satisfied about ourselves.” — C.S. Lewis, The Weight of Glory
A moment from my day… From one of our hymns this morning which I was bummed not to be able to sing because of my voice and lungs.
