31 Days of Parenting Kiddos with Special Needs: Information Literacy

31 Days of Parenting Kiddos with Special Needs

Before I write a blog post on the lack of connection between vaccines and autism, I wanted to do a post on “information” literacy” so that people understand why getting their information on vaccines from a blog on whole foods is not an appropriate thing to do.

So.. what is information literacy? Well…

Information literacy is a set of abilities requiring individuals to “recognize when information is needed and have the ability to locate, evaluate, and use effectively the needed information.” (Source)

Putting succinctly, it’s a set of abilities to process what you read and hear appropriately.

The competency standards are:

  • Determines the nature and extent of information needed
  • Accesses the needed information effectively and efficiently
  • Evaluates information and its sources critically and incorporates selected information into his or her knowledge base and value system
  • Uses information effectively to accomplish a specific purpose
  • Understands many of the economic, legal, and social issues surrounding the use of information, and accesses and uses information ethically and legally
    (Source)

The part of information literacy that I want to get into today is Standard 3, Performance Indicator 2 on this page:

The information literate student articulates and applies initial criteria for evaluating both the information and its sources.

Outcomes Include:

a.) Examines and compares information from various sources in order to evaluate reliability, validity, accuracy, authority, timeliness, and point of view or bias
b.) Analyzes the structure and logic of supporting arguments or methods
c.) Recognizes prejudice, deception, or manipulation
d.) Recognizes the cultural, physical, or other context within which the information was created and understands the impact of context on interpreting the information

Why this particular passage? Because I’ve found that there are a lot of people who take whatever they read on the Internet as completely true or who go searching for things to cite that fit their actual viewpoint instead of searching for what is true and provable.

The example given in the reading comprehension thing I had to do for the college was of a student doing a paper on acne. They had to choose between a piece written by the American Medical Association, something written by the maker of Accutane, and a blog entry. The question was about which piece was a better choice based on the criteria in this performance objective. (Psst! The answer is the piece from the American Medical Association.)

So why am I bringing this up? Because parents have to sort out all the good information from the bad regarding their kids’ conditions. For example, parents need to know to dismiss it when people tell us something about autism that they learned from their neighbor’s girlfriend’s college roommates’ boyfriend’s sister’s nephew.

This post lays out the framework for some things I’ll be writing in the coming days so thanks for hanging in there with this. 🙂

31 Days of Parenting Kiddos with Special Needs: Doctors

31 Days of Parenting Kiddos with Special Needs

Given that my kiddo had his ADHD appointment and flu shot on Wednesday and I had my flu shot/pneumonia shot yesterday, the subject of doctors is fresh on my mind. I thought I’d share some things I’ve learned in having to find doctor’s and specialists for Daniel. As always, your experience may vary.

[+] Do your homework. Generally, most medical practices have a website and they usually talk a little bit about the doctor’s education, what their passions are with regard to medicine, if they do anything outside of the clinic like medical missions trips, etc. Read up on all of this so you can ask intelligent questions.

[+] Look for doctors who can think out of the box a little bit. Daniel hates doctors. He HATES them and part of it is that he hates being stuck in an exam room or restrained for an exam. Dr. Phenomenal, his pediatrician at UC Davis, used to have them schedule us for her first appointment of the morning when part of the clinic would be empty. We’d go for a walk around the empty part so that Daniel could open/close doors to his hearts content and she and I could have a conversation about whatever was concerning me. We’d pop into empty exam rooms every so often so she could do things like check his ears or listen to his heart, but she was more than happy to let him run. In return, he was slightly better about her messing with him to check his ears.

Dr. Awesome, his pediatrician here in Washington, is similar in that her approach is not to mess with him unless she has to. She lets him play with the automatic paper towel dispenser and turn off the computer screen for her which probably makes him like her because he *NEVER* gets to do stuff like that when it’s just me in the room!

[+] Find a balance between respecting their education but also not letting them speak down to you. Remember that your technical degree or bachelor’s degree in the humanities is not equivalent to their medical degree. This means that while you can ask questions about that blog post you read on the Wheatbelly blog that talks about how all gluten is bad for us, they’re going to tell you that only around 1% of the population actually *HAS* celiac disease and the Wheatbelly people are quacks and you should *LISTEN* to them. (Dr. William Davis is a cardiologist, not a gastroenterologist. There’s a difference.)

By the same token, don’t settle for doctors being condescending to you. You know your kid and they need to treat you with respect, even if you come across as a hysterical mom. One of Daniel’s pediatric neurologists had a resident working under her who treated me like I could only understand one-syllable words. Later, I mentioned to the neurologist and her entourage that Daniel was starting an ABA preschool program and Dr. Condescending asked me what ABA was. The rest of the entourage was similarly clueless so the neurologist asked me to explain it to them. It was fun watching their faces when I told them that “ABA is a methodology of working with kids with autism in which you achieve the desired behavior by modifying the antecedent.” They looked at me as if to say, “oh crap… she has a brain!”

This is all for now. Leave me any questions you have.

31 Days of Parenting Kiddos with Special Needs: Blogger Spotlight on Kelly of “This Ain’t The Lyceum”

31 Days of Parenting Kiddos with Special Needs

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.

So please, go check her out!

31 Days of Parenting Kiddos with Special Needs: Blogger Spotlight on Mary of “Passionate Perseverance”

31 Days of Parenting Kiddos with Special Needs

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.

So please, go check out her blog Passionate Perseverance RIGHT NOW!

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.

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