About Jen

Jen isn't quite sure when she lost her mind, but it is probably documented here on Meditatio. She blogs because the world needs her snark at all hours of the night... and she probably can't sleep anyway.

31 Days of Parenting Kiddos with Special Needs: IEP’s and 504 Plans

31 Days of Parenting Kiddos with Special Needs

I’ve heard some of my homeschooling friends on Twitter talk about how they’re homeschooling their kids so that they’re not forced to have an IEP or 504 plan. I really wish I could tell them that neither one is a bad thing and that they ensure that their kids will have access to what they need in order to succeed in school.

So what are they, Jen?

An IEP is a written-out plan that spells out the special educational environment in which a student learns. (“IEP” stands for “individualized education plan”.) Putting it simply, it describes what needs to be in place instruction-wise in order for him to succeed. His covers not only educational goals but also goals for physical, occupational, and speech therapies. Every three years, they do what is referred to as a “triennial IEP” where they do very thorough testing (which is paid for by the school and/or district) to make sure that the student still needs an IEP and also to see where the student is in terms of their therapies and their psycho-social-behavioral development. To qualify, a student needs a diagnosis of one or more of 13 different disabilities and need a very specific environment in order to make progress in their education because of that disability. It came out of the Individuals with Disabilities Education Act (IDEA) which states that individuals with disabilities are guaranteed a free and appropriate public education in the least restrictive environment possible.

A 504 plan deals with ensuring that students get accomodations needed to make progress in their education. It covers things like audiobooks, notetakers, and extended time for tests. It basically exists to level the playing field for general education. A child qualifies if they have a disability and that disability makes it harder to learn in a general education classroom. The qualifications are a little more broad than they are for a child to qualify for an IEP. It comes from Section 504 of the Rehibilitation Act of 1973.

Which one does Daniel have?

Daniel has an IEP and has had one in place since March 2012. In order to put one together or make changes, an IEP meeting or IEP amendment meeting has to be called and the IEP team has to gather. The team is comprised of me, his special education teacher, a general education teacher for the same grade level, his various therapists, a special education person for the district, and a school psychologist. If a meeting is called and someone cannot attend for whatever reason, I have to sign paperwork excusing them from the meeting. Otherwise, everyone has to be present.

What happens at an IEP meeting?

At the beginning of every meeting, I get handed a thick packet which contains all of my rights and the procedural safeguards. They are required by law to offer it to me, even if I choose to refuse it. (I usually do unless it’s the first time I’ve met with the team at that particular school and/or that particular school district.) Everyone has to sign a paper saying that they were present and I have to sign something saying that the procedural safeguard paperwork was offered to me and that I chose to refuse it, because an IEP is a legal document and could be admissible in court if I sued the school or district for violating Daniel’s rights under the IDEA Act. We go over the various goals spelled out in the previous IEP, talk about any meeting of goals and/or progress made, and what new goals they are setting or new services they want to add. At the end, I have paperwork to sign, stating that I agree with everything outlined in the plan. If I don’t agree with something, I have right to refuse to sign it and they need to fix the issue to my satisfaction.

Honestly, it’s ~2 hours once a year for the yearly IEP review and maybe 20-45 minutes for an amendment meeting which is maybe once or twice a year (if even that often).

If you want a lovely table that illustrates the similarities and differences between the two, click here.

{five favourites}: Miscellanea (LXXVII)

#5Faves

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

31 Days of Parenting Kiddos with Special Needs

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

31 Days of Parenting Kiddos with Special Needs

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

31 Days of Parenting Kiddos with Special Needs

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.

The Simple Woman’s Daybook: October 2, 2016

For Today… October 2, 2016

Simple Woman's Daybook

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.)

One of my favorite things… Tillamook ice cream.

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.

I am watching… The Big Bang Theory re-runs.

I am hoping… my boys win the NL Wild Card game!

I am learning… how to do T accounts and various kinds of financial statements. I have a test on Tuesday!

In my kitchen… Mom made stroganoff and apple pie tonight.

In the school room… Daniel continues to do well and his teacher is smitten with him.

Post Script… Here are some American foods that foreigners find absolutely disgusting. I knew about some of these from the various exchange students that I interacted with in two of Jon’s parishes.

Shared Quote… From Nadia Bolz-Weber several years ago:

Reporter from the Grand Forks Herald: “what would you say to the folks who think that tattooing the body is a desecration of God’s temple”

Me: “that they should for sure not get any”

A moment from my day… I was telling someone about Tim Hawkins’ “hand-raising church” schtick today.

Hosted by The Simple Woman.

31 Days of Parenting Kiddos with Special Needs: My Story

31 Days of Parenting Kiddos with Special Needs

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. 🙂