{five favourites}: Miscellanea (LXXVII)

Posted on October 4, 2016 by Jen

One

This list of 8 things to stop doing for your kids. Everything on this list is something I was expected to do on my own when I was a teenager and even before as a middle schooler. Seriously y’all, it’s all doable and I’m even working with Daniel (and have been since age 5) on things like putting laundry away and picking stuff up so that by the time he’s 18, he’s able to do a lot of stuff on his own even if he’s not headed to college or living independently.

And on the subject of #3 on the list, don’t fill out your kids’ college applications or financial aid paperwork. If they belong in college, they can fill out their own applications, write their own admissions essays, keep track of their own deadlines, learn to read loan documents, and fill out the FAFSA themselves. I know that I had to do all of that when I was applying to schools at this time of year back in the late 90’s. (My parents did give me tax information for the FAFSA and financial aid paperwork but I had to fill out the forms myself.) I mean, we had to fill out college applications my sophomore and junior years for the college and career unit we had!

Two

This video from Kristina Kuzmic. Seriously, YOUR KIDS ARE ALLOWED TO BE MAD AT YOU. If your kid is your best friend, you’ve got a problem.

Three

Office supply stores. Staples is my idea of heaven. I love all the notebooks and pens and the potential that they have and the ideas for what to do with them and and and… Even the college bookstore’s notebook and school supply aisles make me happy.

Four

Sleep. My kiddo actually *SLEPT* last night. I am joyful. Really. I am. I’m just not awake enough to express it yet.

Five

Rain. We got some rain last night. It was glorious to listen to while working on things.

Go love up Bonnie, DeBalino, and the others.

31 Days of Parenting Kiddos with Special Needs: ADHD

Posted on October 4, 2016 by Jen

ADHD isn’t necessarily a condition that qualifies a kid as having “special needs” but it’s part of Daniel’s mix so I am including it here.

So… Daniel was diagnosed with ADHD a year ago. I used to say that ADHD was overly diagnosed and that parents needed to control their kids better… and then I gave birth to a kid with no off switch. Oops.

Anyway…

Attention-deficit/hyperactivity disorder (ADHD) is a brain disorder marked by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development. (Source: NIMH page on ADHD)

What this actually means: In Daniel’s case, it’s more on the hyperactivity/inattention side of things though he can be impulsive as well. Mostly, he just doesn’t have an off switch so it used to be really hard to get him to calm down to sleep at night. He has gotten better with age but he still has a hard time focusing on tasks at hand.

How we treat it: We medicate him, which can be a controversial decision because I encounter people who make snippy comments about whether I made the decision for Daniel’s sake or for mine. What I’d love to tell them is that if they are so sure that my decision is wrong, they can come and take over my life and take over bedtime with him. They can also try to get things done while there’s a kid bouncing off the walls. On medication, he can focus on things for a longer period of time, which helps with school but also helps at home where I can get stuff done when I’m not having to deal with a kid berzerking around the house. (Then again, it helps to not be having to restrict him to one room like we did when we were living with my former in-laws. Kiddo hates being restrained or restricted and he had serious cabin fever.) He also sleeps better and is happier overall on medication.

Daniel takes an extended-release form of Adderall in the morning and a low dose of Clonidine and a Melatonin pill at night. He used to not be able to swallow pills well and after trying and failing to be able to give him the powder in the Adderall XR capsule or the pulverized powder of a Clonidine tablet, we started giving him his meds with a spoonful of peanut butter. He still hated taking the pills for a long time so we (read: my mom and I and sometimes my dad) used to have to restrain him and give them to him with some M&M’s. He finally stopped fighting us this spring though he still expects the M&M’s which I am currently phasing out.

How you can help out friends with kids in the same situation: Understand that the decision they make might not be the one you would make and they probably don’t need to hear about how ADHD is a creation of the pharmaceutical industry. (Can you tell how many stupid comments I get from what I’ve said over the last few days? Seriously, some people have no filters on their mouths.)

Otherwise, ask if there’s something you can come and help with like doing dishes or folding laundry because your friend might be in the situation where their kid is trying to find things to do (like pry up the flooring) while the parent is otherwise occupied because they’re bored.

31 Days of Parenting Kiddos with Special Needs: Autism

Posted on October 3, 2016 by Jen

I’ve been pondering how to talk about this for a bit because there is so much misinformation out there and so many people who blog about the topic and have no concept of information literacy which causes them to perpetuate the cycle of misinformation. I’ll touch on aspects of this misinformation later as today’s task is to just talk about what this looks like for us.

So… Daniel was diagnosed at age 2 1/2 with mild/moderate autism.

What this actually means: I really like this definition from the National Institutes of Neurological Disorders and Stroke:

Autism spectrum disorder (ASD) refers to a group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction. The symptoms are present from early childhood and affect daily functioning.

The term “spectrum” refers to the wide range of symptoms, skills, and levels of disability in functioning that can occur in people with ASD. Some children and adults with ASD are fully able to perform all activities of daily living while others require substantial support to perform basic activities. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5, published in 2013) includes Asperger syndrome, childhood disintegrative disorder, and pervasive developmental disorders not otherwise specified (PDD-NOS) as part of ASD rather than as separate disorders. A diagnosis of ASD includes an assessment of intellectual disability and language impairment.

For my kiddo, this means that his brain receives too much sensory input and he has to figure out how to process all of it. He has apraxia which means that the connection in his brain between the words he is thinking and what he wants to say is not fabulous and he can’t make the words come out. (I explained it to my VBS kids as him having a roadblock that the words have to get around.) He used to deal with the overabundance of sensory information by opening/closing doors, flipping light switches, and opening/closing drawers.

How we treat it: He has been in an ABA or autism-specific class since his third birthday. (We were quite lucky that there was one just down the street from us at the local state-run preschool.) He has had in-home ABA therapy as well and when we’re trying to get him to do something, we resort to some of those tactics. We (well, me) also very intentionally force basic interaction in order to teach it to our kids by repetition.

How you can help out friends with kids in the same situation: Please be patient with us and with our kids. We know our child is doing [insert stimming behavior] and if we could stop it, we would. Treat our child normally and talk to them as you would anyone else. (In other words, no baby talk.) Please also refrain from telling us stories about your cousin’s roommate’s aunt’s second husband’s neighbor’s son who is autistic but is at MIT doing complex research at the age of 12 or telling us that you’ve heard that a gluten-free diet will cure it. THERE. IS. NO. CURE. IT. IS. A. WAY. OF. INTERACTING. WITH. THE. WORLD. The GAPS Diet also is not perfect and does not work for every kid, especially with a kid like mine who has a tough time eating anyway.

And for the love of all things holy, don’t even think about mentioning the fallacious link between autism and vaccines. Most moms of autistic kids will look at you with incredible pity that you are so misguided and will likely never trust any advice you give them ever again. Seriously, autism is not a death sentence and treating it like the most horrible thing in the world is insulting to us.

These are the three places I go when I need information on autism:

Lucille Packard Children’s Hospital Autism Services (I’m an alum of the NICU at the hospital.)

The MIND Institute at UC Davis

Seattle Children’s Hospital Autism Center

31 Days of Parenting Kiddos with Special Needs: Developmental Delays

Posted on October 2, 2016 by Jen

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.

31 Days of Parenting Kiddos with Special Needs: My Story

Posted on October 1, 2016 by Jen

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. 🙂

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

Posted on September 30, 2016 by Jen

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)
Day 22: Hospital Bags
Day 23: An Example of Being Thankful in the Midst of Crisis
Day 24: Marital Impact
Day 25: Mental Health
Day 26: A Re-Blogged Guest Post
Day 27: Inspiration Pr0n
Day 28: Autism Sleep Issues
Day 29: Blogger Spotlight on Cammie of “Beyond Pearls”
Day 30: Food Issues
Day 31: Vaccines and Autism

{five favourites}: Miscellanea (LXXV)

Posted on September 21, 2016 by Jen

One

Tim Hawkins’ “Hedge of Protection” bit. I have spit coffee out of my nose before when people have prayed for a “hedge of protection” for me because of this video.

Two

My boys winning tonight. It’s always wonderful when my boys (the San Francisco Giants) annihilate the Dodgers. #BeatLA

Three

My accounting class. I hated math. Let me make that more emphatic — HATED math. I got through Calculus by the skin of my teeth and swore I would never do anything else involving it once I ran screaming from Organic Chemistry. My Macroeconomics class in college had a little bit but it was just computation and a little bit of basic algebra.

Well… I discovered that I loved the accounting work I had to do at UPS-SCS when I worked for them and all the tax/records/reimbursement stuff I did as a pastor’s wife. I think it says something that I’m going to campus on my day off from class to curl up in the library and start my Practical Accounting homework early!

Four

My friend Gina. Girlfriend wrote an amazing piece on autism and suicide.

Five

Wrigley (maker of Skittles). Wrigley, maker of Skittles, weighed in today on Donald Trump Jr.’s odious Skittles analogy (which I am not sharing here because I don’t believe in posting hate on this blog):

Skittles are candy. Refugees are people. We don’t feel it’s an appropriate analogy. We will respectfully refrain from further commentary as anything we say could be misinterpreted as marketing.

By the way, the photographer who took the picture says that he is horrified that Trump Jr. is using the picture for his malevolent purposes because he (the photographer) is a refugee and Trump Jr. used it without his permission.

And for those who are ignorant as to why I’m making a big to-do over this, the origin of the Skittles analogy was a picture book in Germany called Der Giftpilz (The Toadstool) which was used to explain to children why it would only take one Jew to ruin the German people. The author, Julius Streicher, was hanged at Nuremburg for crimes against humanity.