Category Archives: Parenting Kids with Special Needs

31 Days of Parenting Kiddos with Special Needs: Blogger Spotlight on Rebecca of “Backwards in High Heels”

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31 Days of Parenting Kiddos with Special Needs

I’m in the midst of trying to get work for Chapter 6 in my Excel book done early (it’s due on Wednesday by 11:55 p.m. but I try to get stuff done at least 24 hours before the due date in that class in case there’s a problem and I have to do a lot of work at school), doing a couple extra problems for my Accounting class in prep for the test on Monday, and doing a boatload of laundry in case we lose power tonight when the really scary storm hits. (I only own three pairs of jeans and they’re all being washed. I need to hit up Fred Meyer or Kohl’s for more so I can give them to my mom to hem.) Because I have a deadline on how long I can probably work tonight, you’re getting another blogger spotlight.

Why I’m spotlighting this blogger: When I approached Rebecca and told her that I wanted to feature her and her blog for this, I wanted to be really careful because while her daughter Ella is in a wheelchair after losing the use of her legs at age 9, she’s not exactly what people would consider “special needs” (she prefers “adaptive”)…

(By the way, they finally have a somewhat firm diagnosis for her!!! Details are here and here.)

She’s currently the number two ranked professional female wheelchair skater (WCMX) in the world, I’ve seen videos of her doing rung pull-ups at her mom’s CrossFit gym (something that I lack the arm strength to even think about doing), and she’s perfectly capable of speaking up for herself on MANY subjects. In other words, she’s kicking butt and taking names so she’d tell you not to pity her. 🙂

What I want to feature, I guess, is what her mom Rebecca did to get Ella the wheelchair she needed. After getting denied multiple times by insurance companies (because insurance companies are that way), Rebecca took to Twitter with the hashtag #ellaneedswheels. Chevrolet mistakenly retweeted it… and that was a fabulous thing because the hashtag went viral which got the attention of the escalation department of her insurance company. Long story short, the insurance company caved after 3 Fox News Anchors and Michelle Malkin retweeted the story. 🙂 (An article by my friend Sarah about the whole thing is here.)

Oh yeah… there was also the online swear jar thing. 🙂

So please, go check out Rebecca’s blog while I fold laundry before the world outside fills with flying houses, witches on brooms, and flying monkeys.

My cup of cranberry juice.

31 Days of Parenting Kiddos with Special Needs: Snarky Answers to Stupid Remarks

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31 Days of Parenting Kiddos with Special Needs

Every parent of a special kiddo has had at least one person make a stupid remark to them. Some people have even let me do guest posts on this subject. 🙂 Now that I’m kinda sorta done with hell week (at least until I start correcting the issue with one of the problems on my Accounting homework), I thought I’d post a few here.

“Daniel is autistic? Did you vaccinate him? Have you tried the GAPS diet?”

*utters a gutteral growl and points to the shirt that reads “Yes, my kid is autistic. Yes, we vaccinated him. No, we’re not doing the GAPS diet. Now go away, you weapons-grade plum!!”*

The word “retarded”.

Apparently someone’s parents neglected to teach them manners! Good thing to know I’m raising Daniel not to be socially stunted enough to say something like that in public. 🙂 *smiles sweetly*

“Need help? (Usually said as I was trying to enter or exit with the kid in his stroller.)

Nope! What makes you think that?

“You need to take care of yourself. (Usually said after criticizing Daniel’s behavior or my parenting.)

You’re right! Thanks for offering to pay for a qualified sitter while you drive me to the local nail place for a mani/pedi and clean my house from top to bottom! Oh yeah… you can also pick me up an iced vanilla latté with whole milk from Whidbey Coffee Company on the way. 🙂 Don’t forget to scrub my toilets and fold my laundry before you pick me up! *smiles saccharinely*

It must have been so hard to leave your kid in the hospital and come home every night. (This was said to me at a church dinner after Daniel’s epic three-week hospital stay in March 2011.)

*glares* Who said I came home every night? Didn’t Jon tell you how much I *LOVE* hospital food, showering only once every 4 days, and sleeping in uncomfortable chairs while watching my kid hooked up to endless tubes and machines?

Someone calls Daniel the “Planned Parenthood poster child”

*repetitively throat-punches the speaker because there are some things YOU JUST DON’T SAY TO A MOTHER!!!!!!!!* (Making this even worse, it was a close family member who said it. Needless to say, we have no relationship anymore and I’m not regretting it.)

Something about how having an autistic child is the worst thing they could imagine.

Yeah, you know, having a child who makes comments like that to people must be pretty humiliating as well. I weep for your mom.

“I’m sorry your child is retarded.”

*shrugs* Eh, at least he’s smarter than you are!

It must be hard knowing that your kid is autistic because you chose to give him the MMR vaccine.

I dunno… I think it would be harder being so deluded that you believe that lie that vaccines cause autism even after *MULTIPLE* studies of millions of children proved that they don’t along with Dr. Andrew Wakefield admitting that he lied, The Lancet issuing a retraction, and Dr. Wakefield being stricken from the British Medical Record for knowingly deceiving people. But that’s just me. *smiles with teeth*

What other stupid things like these have you heard people saying?

31 Days of Parenting Kiddos with Special Needs: ID Bracelets

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31 Days of Parenting Kiddos with Special Needs

Good news: The nice people at Dayspring want to give one of you fabulous people a $100 gift card. I know that a gift card like that would *TOTALLY* pay for my yearly Christmas cards. 🙂 Go on over to yesterday’s post for the Rafflecopter.

Even better news: I figured out how to get my Desktop back after the [insert expletives] at the Evil Empire decided that it would be a *FABULOUS* idea to put my laptop in tablet mode after doing the Anniversary Update. This makes my life *SO* much easier than it has been for the last 2-3 weeks because I have my desktop, my taskbar, and the ability to layer windows back. I’m trying to work through my intense fury before I send my feedback to the lackeys at the EE’s headquarters in Redmond because they have MAJORLY inconvenienced me for the last few weeks.

So… today’s topic from “the cheater entry list” is ID bracelets for kiddos. If you have one who is non-verbal like my Daniel, this is important. These two are my favorite companies.

Road ID: I discovered them two years ago and Daniel is on his second one. (We’ve moved a few times.) One feature I love is that you can get the Interactive version of the nameplate which puts a code on the back that a first responder can call into a 1-800 number and have access to every bit of your medical information so that they have all your medications and drug allergies when they’re taking you to the hospital. A lot of hikers, backpackers, and runners use them and the whole concept came when someone had an accident and couldn’t communicate with the first responders. Additionally, they let designate a charity to whom they’ll donate part of your purchase price (you can pick between around 9 of them). I seriously cannot say enough good about them and they have been wonderful in terms of customer service.

Alert Me Bands: We switched to this one a year ago (before switching back to Road ID after this last move) after a friend pointed it out to me on Facebook. It’s a similar concept to Road ID and the bracelet we had for Daniel was similar to this one. (I added one in about Daniel being non-verbal and having asthma.)

31 Days of Parenting Kiddos with Special Needs: You Know You’re The Mom of A Developmentally Delayed Kid…

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31 Days of Parenting Kiddos with Special Needs

There is a giveaway from the lovely people at Dayspring. They really want to give someone a $100 gift card. The Rafflecopter for the giveaway is below:

a Rafflecopter giveaway

I’m in the midst of a week where I have a boatload of work due on Thursday and Friday so there might be “cheater” posts put up by me in the next couple days. Today’s is one that I wrote in November 2011 that applies to what I’m writing about this month. Enjoy!

Daniel had a pediatrics appointment today. After it was over, I seriously felt like I should be putting together a “You Know You’re A _____ If” list. So without further adieu…

You know you’re the mother of a developmentally delayed kid when…

[+] You rejoice because your kid is at the 25th percentile for height/weight/head circumference because they can finally plot the points on their growth chart.
[+] You can succinctly describe your horrendous pregnancy and birth experience in under 10 words but most of them have three or more syllables.
[+] The sight of your kid walking at 2.5 years old makes their pediatrician clap with joy because, dude, this is HUGE.
[+] You aren’t fazed by your kid’s abysmal MRI results because you got the report six months ago and your child’s physical therapist from Easter Seals talked you off the (figurative) ledge at that point.
[+] Your child’s pediatrician tells you that your child’s brain has many abnormalities (see “MRI results above”) and will never be like the brains of other kids their age. Your response: “We’ll see” while thinking to yourself that your child has a habit of defying predictions like these.
[+] Those abysmal MRI results get you a consult to every specialist you ask to see.
[+] Your child has more specialists in their lives than most hospitals have on staff. (Josh’s mother Susan is my former IV area director.)

Now for the ones that don’t apply to the peds appointment today!

[+] You know that you will cry when your child turns three and (in California) you lose your Easter Seals therapists. (Under the Lanterman Act in California, your child becomes the problem of their local school district once they turn three.)
[+] All your child’s developmental milestones are VERY BIG DEALS!!!!!!!
[+] You have stories from the NICU, PICU, and Peds wards of the hospital.
[+] You’ve had to explain to people why your kid is not waving at them, why your kid does not need a children’s menu, or why your kid isn’t doing ____ when other kids their age can do it.
[+] You finally just learned how to (joyfully) suppress the urge to say “Bite me!” to the person who asks the third question on that last item. (OK… again this is probably just me.)
[+] It makes you happy when people acknowledge your child/have a normal conversation with them instead of talking over them.
[+] You read the blogs of other mothers who have kids with developmental delays/Down’s Syndrome/autism spectrum disorders and can identify with their posts.

31 Days of Parenting Kiddos with Special Needs: School Choices

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31 Days of Parenting Kiddos with Special Needs

If you read my post on IEP’s and 504 plans, you’ll know that all children with disabilities are guaranteed a free and appropriate public education in the least restrictive setting. This can look different depending on what schools are available in the area.

Public schools: In California, the school district takes over services at age 3 and I think it is the same situation in Washington. In any case, the district would pay for certain evaluations to be done as well as accept reports from any therapists already working with the child. All of these evaluations are compiled together into a report and an IEP or 504 Plan meeting is called. The results of the evaluations are discussed and you are given a choice of programs. I think our choices for Daniel were the ABA classroom, a special day class, or neither one but to just receive certain therapies.

Private schools: This wasn’t an option for Daniel but it might be for your kiddo. If you can ensure that they have whatever supports they need and you’re willing to pay for it, go for it!

Charter schools: Sometimes a charter school exists like Land Park Campus in Sacramento. If the school meets your kid’s needs, this might be a workable option.

Homeschooling: If you feel like this is your best option, there are curricula like this one from Memoria Press. (HT: Julie.) You can get therapy services from the school district but educate your kid yourself.

What we decided to do: Jon was homeschooled from K-12 but I had no desire to homeschool Daniel, even if he had been neurotypical. With the added issues from the autism, there was just no way I could do it and retain my sanity because working with Daniel would require more patience than I possess. We were very fortunate to have the ABA class at our local preschool in Galt and that was the option we chose. I’m still in contact with his teacher and she was such a wonderful resource for me. It also gave me the morning for doctor’s appointments and to get done what I needed to get done. For Daniel, it became a fun place for him to go and meet people and grow as a child, something that doesn’t happen with a mother who is as introverted as I am. It was honestly a win-win for all of us.

31 Days of Parenting Kiddos with Special Needs: Information Literacy

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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

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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.