Category Archives: The A-Word

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

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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.

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

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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”

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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

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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.