Category Archives: Write 31 Days

31 Days of Parenting Kiddos with Special Needs: Autism Speaks

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31 Days of Parenting Kiddos with Special Needs

You know how I blogged on information literacy last week? (You didn’t read it? Go read it now. I’ll wait.) Well… I have an example of it now.

The website that is given out to every parent that gets an autism diagnosis for their kiddo is Autism Speaks. They’re the most vocal organization out there of all the resources on autism, they sponsor walks to raise money for research, and they’re all about managing autism/finding a cure etc. I was too shell-shocked to really read up on it when Daniel was diagnosed and instead focused more on learning about ABA because it was a way of working with him that seemed to reach him in ways that other things didn’t.

One small problem with the site: it’s run by neurotypical people and is aimed at making autistic people more like those who are neurotypical.

The problem with this: People with autism AREN’T neurotypical. It would be like putting someone in a room with speakers going at full volume with a million different sounds and then expecting them to carry out their life as normal. IT’S NOT THE WAY OUR BRAINS WORK!!!

A big problem that I have is that people act like autism is a deadly disease and that it’s incompatible with life. Seriously, I’m high-functioning (which we discovered AFTER Daniel was diagnosed) and my life is fine. Do I have to find ways to adapt to the world? Yes. I go into hiding after having to be social for an extended period of time and I tend to hyper-focus. I also have always taken what people say very literally and had to learn to distinguish between reality and hyperbole. Is my brain useful in this world? It is. I think my brain functioning in a slightly different way means that I have a way of seeing things and analyzing things that helps me and which can other people. Would it be that way if I wasn’t on the spectrum? No, and I think it would be boring.

After finding out what the signs for autism in girls are and discovering that I fit them, I changed my viewpoint quite a bit. Rather than hoping that ABA and other therapies would “fix” Daniel, I started thinking about what would help him to live in the world being the person God made him to be. I also eventually (like a month ago) stopped feeling like Daniel’s autism was a failure on my part. (And yes, I had been made to feel that way by a lot of people.)

Daniel never stopped being the kid he “used to be” — he has always been himself and will always be the kid he is. Instead, I need to work on myself and my expectations. I found this to be the case when I met with his teacher and two of his therapists today for my “fall family meeting” (a fancy-schmancy name for a parent-teacher conference) and they talked about how much a sweetie pie he was, how he interacts, how he participates so well, and just how much they love him. I used to freak out about him staying at grade level and now I’m more concerned with making sure that he learns to be kind and have made peace with him being whoever he ends up being as a student. (Kiddo *LOVES* school so I’m pretty sure he’ll catch up eventually.)

So how exactly does information literacy fit in? Well, they tell you to look at bias, manipulation, etc. as a means of determining which sources are more authoritative. Autism Speaks doesn’t (or at least didn’t for a while) have any autistic people on their board of directors or really in any high-up part of the organization which is a bit weird for an organization that purports to speak authoritatively on a condition.

I asked my dear friend Anita for an alternative and she recommended the Autistic Self-Advocacy Network instead.

31 Days of Parenting Kiddos with Special Needs: Choosing Life (I)

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31 Days of Parenting Kiddos with Special Needs

This is a really controversial subject and I want to make it clear that I’m not judging anyone for the decision they did or didn’t make.

So…

I hate that I’m having to bring this up but… we have a problem in our society and it’s that we shy away from anything that inconveniences us. This manifests itself very prominently when it comes to our inability to accept any physical/mental defect in our children. The abortion rate for diagnosed spina bifida cases is 64%, for example, and I’ve heard people say that the rate of abortions of babies with Down Syndrome is around 90%. That last one doesn’t surprise me because I know they jumped me forward in line for a 3-D ultrasound with Daniel because there was a chance that he had Down Syndrome and they needed to know if they needed to do amniocentesis to get a diagnosis because the test result came back at ~20 weeks gestation and the deadline to terminate the pregnancy was 24 weeks. (For those who haven’t heard the story, my response was that I’d be happy to get the ultrasound but I was not getting amniocentesis nor was I going to abort my kid. It was a big step in my pro-life conversion.) Neither condition is actually “incompatible with life” as many doctors say they are and I think that this is a result of all the lawsuits brought for “birth injuries” because the kid did not come out of the womb in perfect condition.

And yes, the one thing I *WILL* judge are wrongful birth lawsuits. Those things make me vomit because you’re telling your kid that you would have aborted them if you had the chance. (Case in point.) In the case of this mother in Montana, she did not exercise her due diligence and participate in genetic counseling, which is apparently the fault of her doctors, right? (By the way, her daughter is doing fine.) It’s not like there are people who have it and are doing fine or anything…

What I really wish would happen is that doctors working with pregnant women would be required to spend some time interacting with people who *DO* have Down Syndrome or spina bifida because, as I said earlier, neither one is incompatible with life though they can and do make life inconvenient. Two of the daughters of the pastors in the bigger town where we lived in Montana have Down Syndrome and one of them lives on her own, has a job at a daycare, and is able to function on her own with a little bit of help. (The other daughter was quite young when we lived there but I do believe she is moving in the same direction.) I know several young men in their 20’s who are the sons of former colleagues of Jon’s and were born with spina bifida. Both are in college and self-sufficient. I can’t imagine the world without any of these four people.

I’ll probably re-visit this topic tomorrow. In the meantime, I have an Accounting test tomorrow and need to get some sleep!

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.