Ch Ch Ch Changes…

Some may have noticed there are some changes to my site. It now has WordPress in the address as I am no longer paying for the pro account. I was not using it to the fullest extent as I should. Between school, extracurriculars and competitions, and downtime, I have not posted as much as I thought I would be able to.

I do still plan on reviewing board/card and video games and how they can benefit kids. We have a plethora we have not yet touched.

Our Facebook is still the same, that is the easiest way to reach out.

Back to School

The start of school is always a stressful time for any student or parent if an IEP or 504 is involved. The best way to navigate this is an intro letter. I now do this every year. Teachers love this.

Teachers don’t always receive IEPs and 504s until the 1st day of school.
Often times, non-core teachers won’t receive them until much later.
Schools can assign 504s and IEPs without the parent, so getting intro letters like this shows you are an involved parent.
Having a photo and a brief description brings your child to their attention immediately in a good way.

I used to talk to the teachers at Meet the Teacher night, but sometimes they are too swamped, or lately due to COVID, aren’t there… so enter the intro letter:

I use one of the “Provider Introduction Letter Healthcare” template on Word for the letters of introduction.

I change the photo to the child, remove the logos, and where the address is above the photo, I put “Ultimate Goals” as in what they want to be when they grow up for the older kids, or hobbies/fav subjects for the younger ones.

“Ultimate Goals” examples:

Thing 2:

Dream: To be a professional musician
Realistic: To be a band director/assistant director
Backup: To edit videos and music while tutoring music

Thing 4:

Something in Forensics
Video Game Designer with Disabled Characters

Sample Template:

Anything in Italics is not part of the template, but my notes to you. Feel free to put the verbiage into you lingo and writing/speaking style.

[Date]

Dear Teachers (include one for each core class and extra curriculars)

My name is [child’s name]. I am a [grade here] this year. You are receiving this paper because I am taking your class. (If a younger sibling, add fluff like, “you may know my sibling so & so”).

My parents and I know the beginning of the school year is chaotic and we want to let you know I have a [504/IEP/BIP,etc], in the event you don’t receive it before school starts. I have [medical/neurological/physical/behavioral/etc] issues that can impact my learning.

[Briefly state if child is open about medical issues with adults and/or peers, or keeps it private. If they have been bullied because of them.][List some of or all the issues, can also say refer to 504/IEP/etc about more private issues.][Include anything that my affect the child on the first day of school, ie: free bathroom breaks, frequent nurse trips, wheeled backpacks, anxiety, issues with new routines, etc]

[if child is open to talking about themselves and is higher functioning, “feel free to ask me questions” or] contact my [mom/dad/guardian type][guardian name], at [phone] or [email]. (Our school system encourages special needs children to advocate for themselves if they are able to once they reach junior high.)

[positive sentence about the future year]

[closing]

[child’s name]

Short but sweet

That’s all there is to this one. I wish everyone luck! Even if your school has already started, it isn’t too late to do an intro letter if you are concerned and didn’t speak with the teachers directly. This isn’t as necessary at an Elementary level when they have 1 or 2 core teachers, plus music and PE, but comes more into play when they reach middle school and higher when they have 6-8 different classes, not counting clubs and extra curriculars.

Communication is your friend. I make an “email group” so if one of the more medically fragile kids is going to have extended absences or surgery… I can just bulk mail. I don’t do blind copy ever. This also leaves a nice paper trail if any teacher doesn’t want to work with the extended absences or says they weren’t informed. Always CYOA, cover your own “tushie”.

Catch phrase here… still don’t have one.

Death by Social Media

This post is not a review, but I feel it is a very important subject. There’s a a couple of wrongful death suits against TikTok because of the deaths of 3 young kids who did TikTok challenges. I also know there are attempts of suits against YouTube for for similar incidents, but most of those are for dangerous “life hacks” that have been pointed out as dangerous or deadly, but the content has not been removed.

I write this not just for the special needs families, but for families of all children as ANY child’s brain is still developing, surprisingly, until the age 25. That’s right, most people don’t reach fully maturity until age 25. This is why so many of these trends and challenges affect children, teens, and young adults. Helping them understand the dangers from an early age will help them recognize it when they are not around you and are subject to peer pressure.

Note – when I refer to people being dumb or stupid in this article, I don’t mean intelligence… I mean when a person chooses to do something they know is dangerous just because they are hoping to become popular. The younger they are, the more lenient I am regarding this, which is why so many of these deaths and injuries are tragic. They’re 100% preventable.

“Smart people learn from their mistakes. But the real sharp ones learn from the mistakes of others.”
Brandon Mull, author of Fablehaven, Dragon Watch, Beyonders, Five Kingdoms, the Candy Shop War, and more

Media is Reconditioning our Brains

We didn’t allow YouTube in the house unless we were watching it as a family because of wide variety of content. And thanks to their algorithm, if you start watching a certain type of video, it continues to force feed those videos to you. Of course, the kids who lived in other houses, we didn’t have control over, but we noticed issues. They would watch videos similar to the America’s Funniest Home Videos, a compellation of videos with some cheesy music and a laugh track. However, what I noticed was instead of minor injuries shown like in the original show, these would have resulted in major trauma or death (insert my medical background here). I was horrified they found this funny. They started laughing every time anyone in real life was injured or was ill, they were completely desensitized (no, they do not have Autism). I had to recondition their brains and went about it rather untraditionally and unconventionally. (I also noticed Thing 3 started planning his own stupid, dangerous stunts and planned on recording them… yeah, no.)

There are lots of studies of the effects of laugh tracks on people. You can see it in real time by watching 100 Humans on Netflix, I think it’s the Pain vs. Pleasure episode.

So, I went back and watched some old Jackass clips. There is no laugh track in that show, most of the cast are professional stunt men. So I searched for clips where the end result showed them getting injured, possibly with the need of an ambulance. I started out with some easy ones. We all laughed out loud (it was all a ploy). Then I went to one with Johnny Knoxville on a dirt bike. I can’t remember what exactly happened, but he ended up unconscious. His crew called for an ambulance. The kids I was trying to recondition got really quiet. I decided to fake laugh and ask if it was funny. They told it wasn’t funny. I asked them why. They told me why. I replayed the video but added in a laugh track from my phone. They were horrified. I have not seen them watch one of those compellation shows again. It wasn’t my first choice, but sometimes a visual representation is the only way a child can learn. (Let me say that letting my kids watch Jackass would never be my first choice, but I do have to say, that show always showed the effects of their decisions, whether their friends getting angry with pranks, them getting hurt or sick, or even arrested. There was no sugar coating and it didn’t fade out after the stunt or prank leaving the audience wondering what happened next or leaving us thinking everything was ok. But I will also mention Jackass below in the challenges).

We do not allow the teens to have most of the social media. The teens that do have it usually only have it to connect with their friends or use it for art purposes. We are very involved with their “social networking” (not cyber stalking, but check in regularly and we do require some family to be social contacts for safety).

Back to the challenges:

Challenges

Most “challenges” appear on TikTok, but can show up on any platform. I will not be putting specific dosages of any of the challenges as I do not want to encourage them. (Some of these challenges have caused substance addictions with ordinary house hold items are are known in the medical community as “TikTok Drugs”, which can often lead to more dangerous drugs). Most of my statistics are based on the US, unless I say otherwise. (If I say “you, I don’t specifically mean you as the reader, I mean you and in any human being, but I get tired of writing people or humans.. the research for this was exhausting).

Banned Challenges

These Challenges are banned from TikTok. It’s not enough…

The Devious Licks Challenge

The Purpose:

To vandalize or steal from a school, usually the bathroom.

The Dangers:

Kids were recording themselves doing a crime, uploading it to the public… IT’S VIDEO EVIDENCE! SELF ENCRIMINATING!!

The Fallout:

Participants were arrested and charged. Some stole so much they have felony charges. Other fallouts include schools shutting down class-time bathroom breaks, reducing the number of bathrooms in use, especially for the boys. Students that require in class bathroom breaks may be ostracized or have to be physically accompanied by an adult. Special needs kids requiring breaks may have to go to the nurse’s bathroom, which may not be near them, which can increase the chance of an accident…

The Milk Crate Challenge

The Purpose:

Show your skills by climbing a pyramid of milkcrates and making it back down the other side without falling.

The Dangers:

Falling, falling on top of the crates…

The Fallout:

People fell… injuries included but were not limited to:

dislocated shoulders
rotator cuff tears
ACL tears
meniscus tears
broken wrists
spinal cord injuries

The Fallout:

Head injuries galore. A 14 year old did this challenge, except his friends wrapped him like a mummy. He fell into a concrete wall and a metal window frame suffering an aneurysm and crushed his eye socket. He’s currently blind in that eye.

The kiki challenge

The Purpose:

You get out of a moving vehicle (as the passenger) and dance along side the moving vehicle to whatever song is playing.

The Dangers:

Drivers have done this challenge… leaving a moving vehicle unattended is illegal. In several states, it is illegal to be doing ANY activity around a moving vehicle. The physical dangers are numerous, you can still be injured by a vehicle at slow speeds, people even run into poles. It causes car accidents.

The Fallout:

Besides the infractions from the legal issues, injuries are not limited to fractured jaws, being hit by oncoming cars, broking arms and legs, head injuries…

The Skullbreaker Challenge

The Purpose:

As its names states, you cause your victim to fall on the floor. Usually this happens by having a person one each side of the victim. The victim is instructed to jump, while in the air, the other two kick the legs out from the victim, causing them to fall backwards in mid air…. because it’s funny??

The Dangers:

The victims fall on their backs and heads. The name of the challenge is there for a reason.

The Fallout:

As you’d expect, there were numerous injuries reported. 2 teens were charged with a misdemeanor for the injuries they caused to their friend while doing this challenge. Remember, there is no consent by the victim. The victim is 100% a victim.

The Fire Challenge

So this actually started before the big social media boom. A lot of people blame Jackass for this one, among others like shopping cart sledding/jousting. But it really gained hype in 2014.

The Purpose:

Pour flammable liquid on self, light self on fire, hose self off with water OR see how long it takes to put themselves out.

The Dangers:

Besides second and third degree burns, the chemicals and smoke that is inhaled can cause permanent damage to the lungs. AND when you have a liquid accelerant and you add water, the water can cause the accelerant to just splash somewhere else, still on fire, rather than putting it out. Think oil fires in the kitchen.

The Fallout:

Life-threatening and life-altering burns. I can’t find the exact number, numerous. There’s a case where a mother was arrested for aiding her son in making the video, in which he was badly burned.

The Car Surfing Challenge

The Purpose:

Surf your car like Teen Wolf.

The Dangers:

You’re not a werewolf, you are a squishy human. No super strength, agility, or speed.

The Fallout:

Injuries and 7 deaths in 2016 alone.

The Dry Scoop Challenge

The Purpose:

You ingest a mound of undiluted supplemental energy powder (I don’t know why).

The Dangers:

An overdose of whatever is in it.

The Fallout:

A professional stripper suffered a heart attack at the age of 20 due to this. The medical professionals initially missed it and thought it was only an anxiety attack due to her age and profession.

The Scalp Popping Challenge

The Purpose:

To pull a bunch of hair or have someone pull your hair to “pop” your scalp.

The Dangers:

Your scalp is not a joint, it is not meant to pop.

The Fallout:

Bruising, scalp damage, bald spots, hair loss.

Dr. Youn, dermatologist

The Nutmeg Challenge

The Purpose:

To make a concoction of nutmeg and water to induce a high. 🙄

The Danger:

Science stuff… affects the central nervous system, causing:

hallucinations
drowsiness
dizziness
confusion
seizures
breathing difficulties
increased heart rate
stomach pain and GI issues

The Fallout:

Nutmeg poising can easily cause organ failure when the individual is taking other medications. This is highly important when a special needs individual is trying these “challenges”. From 2001-2011, in Illinois, there were 32 cases of Nutmeg poisoning, 17 were accidental, 10 were under the age of 13.

Chubbyemu is a PharmD who specializes in toxicology…

The Benadryl Challenge

The Purpose:

Take enough Benadryl to experience hallucinations…. yay (sarcasm).

The Danger:

Benadryl is an antihistamine. The symptom list is long in overdoses, not limited to:

increased heart rate
delirium psychosis
seizures
coma
death

The Fallout:

Numerous overdoses linked to this challenge including the death of a 15 year old.

Chubbyemu is a PharmD who specializes in toxicology…

The Sunburn Art/Sunburn Tattoo Challenge

The Purpose:

Create art using your body, the sun, and sunscreen/clothing/objects.

The Dangers:

Sunburns literally burn your DNA. This can cause it to mutate which can lead to skin cancer. 1 in 5 Americans develop a form on skin cancer during their lifetime.

The Fallout:

Some of these people have second and even third degree burns from doing this. But others will probably develop skin cancer later because they are repeat posters.

The planking challenge

The Purpose:

To show off your mad planking skills by planking in unusual places.

The Dangers:

Some people went to the extreme and planked in dangerous places.

The Fallout:

Many people were injured as they fell from heights while planking (light posts were a popular spot). An Australian man fell to his death in 2011 while attempting to plank from his balcony.

The Bird Box Challenge

The Purpose:

Because Sandra Bullock navigated rapids while wearing a blindfold, the challenge is to see what every day task you can do blindfolded…

The Dangers:

The Fallout:

The Outlet challenge/The Penny challenge

I can’t believe I’m even writing this right now.

The Purpose:

Partially plug a charger into the wall outlet and drop a coin into the gap.

The Dangers:

The Fallout:

Some teens prove to be larger, hormonal toddlers… If you are lucky, you have a fried outlet or a tripped breaker. This has caused some electrical fires and shocks. No reported electrocutions at this time…

The Hot Water Challenge

The Purpose:

It’s supposed to be a prank involving pouring boiling water onto an unsuspecting or sleeping friend. I don’t understand how ANYONE is this stupid.

Alternatives include drinking boiling water and throwing boiling water into the air during winter to create pretty patterns.

The Dangers:

Obviously burns, life altering burns than can require surgery. Death even. These kids must have never stepped foot into a kitchen.

The Fallout:

Severe burns. The worst being an 11 year old who had to be rushed to the hospital after her friend thew boiling water on her. An 8 year old died after drinking boiling water at a sleep over.

The cha-cha slide driving challenge

The Cha-Cha Slide, NASCAR edition, same effect as “influencers”

The Purpose:

To do the dance move, but with your car… so when it say slide to the left, you turn to the left. Criss cross means swerve back and forth.

The Dangers:

It’s reckless driving.

The Fallout:

Property damage, injury, no deaths yet

(why can’t people just do this on roller skates).

The Frozen Honey Challenge

The Purpose:

To freeze honey and eat it like a popsicle. Yum!

The Dangers:

Although tasty, this can drastically raise ones blood sugar all at once, causing a host of problems. Botulism spores do not die from being frozen, so the more honey you consume, the higher chance you have of getting botulism. Honey in small quantities is known to support respiratory health, in large quantities it does the opposite causing cough and congestion.

The Fallout:

The most common complaint associated with this challenge (and has even been caught on video) is headache and gastric distress including nausea, vomiting, bloating, and diarrhea.

The Silhouette Challenge

The Purpose:

To record yourself with music and a red filter so you can promote body positivity.

The Dangers:

People were manipulating the videos using software to find out the original footage, revealing if they were wearing clothes, reveal faces, and repost them online. This fed into child pornography.

The Fallout:

Ramifications of having nude photos or partially nude photos leaked on the internet. The distribution of child pornography. Need I go on.

Fake or Over Hyped Challenges

I have these in a separate category because they were either elaborately staged or not many people participated in them, but the media hyped them up.

Tide Pod Challenge – can be deadly. Very few participants. Was primarily a media mass hysteria
Corn Cob Challenge – This involved putting a corn cob on a drill bit and eating it. Was overly hyped, but was connected with a man chipping a tooth and a woman partially scalping herself.
Cereal Challenge – pouring cereal and milk into someone’s mouth, then eating it from said mouth. 🤢Rumors this one got banned even though it didn’t catch on. Alternative is they have a pet eat out of their mouth. 🤮
The Pee Your Pants Challenge – Billy Maddison, that you?
The Poop Pranks – They’re EVERYWHERE, I say fake because they’re done with melted chocolate or Nutella. Usually asking for help regarding a poop incident and to see what the reaction is.
Full Face Waxing – this isn’t hair removal wax, but exfoliation hot wax. I mainly see videos from one barber, so I don’t think it’s a big trend. They’re pouring it on the eyes!!! And it’s in the nose and covering the mouth!! Looks like they’re from a budget version of House of Wax… and that’s saying something.
Bright Eye Challenge – It started as fake, you can change your eye color naturally with bleach or alcohol drops! Surprisingly, or unsurprisingly, a few people actually tried this and it resulted in blindness/temporary blindness. Thankfully most people had common sense. The original posters did come out and say it wasn’t real, but people still did it…
Snorting Condoms – Rumored to be fake, but you know someone out there is dumb enough to do it.

Dangerous DIY “Life Hacks”

YouTube is probably the worst at pushing these with channels like 5 Minute Crafts, Blossom, Instructables and TroomTroom. Not only do the hacks not work, some of them are dangerous or deadly:

DIY Vampire teeth – many use nail glue… it’s toxic and it won’t come off
Tooth Filing – most of these individuals end up having to get veneers and those have to be replaced periodically. They’re expensive. This ruins your teeth. It’s better to leave cosmetic procedures to the professionals.
Erection Cream to Plump your Lips – Besides the chance of skin reactions, this can cause a drop in blood pressure.
Lemon Juice for Skin Care – It burns, It’s worse on your face.. don’t get it near your eyes!
Diet Cleanses – they’re either a starvation diet or they give you diarrhea. They’re called cleanse for a reason. Either way it will mess up your electrolytes and can make you sick.
Fractal Burning – 33 have died since 2016, not to count the near deaths, burns, and house fires.
and many more

Excellent Debunkers for DIY:

These individuals are our favorites for posting debunking videos regarding life hacks or trends. Some of these are great to watch with the kids, others you may want to screen first.

Ann Reardon, food scientist, tackles a lot of the cooking and kitchen hacks. Language safe

Dr. Mike “reacts” to medical hacks. Language usually safe (guests may not be)

Dr Youn tries out viral hacks and trends. Languages safe

NerdECrafter has followed “crafting guidelines” from diy channels and shows you the real results.

ImBrandonFarris tests hacks in funny and ridiculous ways to show how stupid these hacks are. Language mostly ok…

KallMeKris does reacts and tests out some hacks. Some swearing, some is censored.

Naomi Jon, a German Youtuber, tries out beauty trends and orders random stuff from questionable sites like Wish. Extreme language, no filters… but so funny.

Brad Mondo, professional hair dresser, reacts to hair videos and tries out viral trends and hacks on his dummies so you don’t have to. Bleeped out language, lots of bleeps.

Khaby Lame, a TikTok star who exposes the hacks as what they are… ridiculous. (This is not his channel, he doesn’t have a YouTube channel). No speech, generally.

Ending

I feel my IQ has dropped while writing this. I forgot how I was going to close this. I apologize. This stuff is brain melting. Rather than returning to this just so I can write a closing statement, I’m going to hope you can figure out what I’m trying to say. I don’t want to return to this, EVER.

“Learn from the mistakes from others. You can’t live long enough to make them all yourself.”
Eleanor Roosevelt

And then I was all ready to post this and it wouldn’t post… so I brought up a second tab to see when my last save point was and it was about an hour into writing this page… Guys, I lost hours of work. Thankfully I have my initial tab open so I’m just sitting here copying and pasting, saving. Hoping it doesn’t happen again…. It took me 1 hour and 45 min to copy and paste everything. Please be understanding if there are tons of errors. It is late and I have been working on this for 12 hours now. Fingers crossed it actually posts this time.

Money Makes the World Go Round…

This may sound like the most cynical title, but we know it’s true. There are countless poems and songs with this very line in it. Lets talk about teaching special needs kids about money management and financial responsibility. I know many parents’ goals is to help foster independence with their special needs kiddo so they may be able to function as an adult with minimal help, or when it is our time to go… (I understand this isn’t possible for every situation, but these steps will help in higher functioning cases). This is also going to be a long article because there are options available. I’m doing the leg work so you don’t have to.

Step 1) Identify Your Biggest Hurdle:

This is key. Individuals with vision issues will need to learn how to use apps on their phones to identify and count money, along with being able to identify money by touch (there are many ideas on folding paper money differently based on its denomination). Individuals with intellectual disabilities or Autism often deal with concrete truths rather than abstract ideas. People with dyscalculia may need help with the money calculations, but may be able to understand the concept of money management.

Step 2) Start Early, Start Young

Teaching children to count is as natural as teaching them the alphabet, shapes or colors. However, most people don’t think about teaching them about money identification until the school starts doing it. Down here, it is in 1st and 2nd grade (two different ISD’s).

Something to keep in mind about teaching them about money early on is be aware of the play money. Up until recently most play money was brightly colored and looked nothing like real money. (to be honest, we do use these in lieu of an allowance, I will explain bellow). But they don’t help the kids learn how to identify money or count it. I had to find play money at Staples years ago. Now they’re everywhere and even Melissa and Doug has a nice set. If your child has learning issues, repetition is key, recognition is key, so getting something as close to the real thing as possible is important.

Take them to the store. It may make the store trip take longer, but once they understand the concept of counting and higher/lower or more/less, you can start teaching them about sales and to look on the price tags at price per oz and such so they can learn how to spend their money better. Just because it says it’s on sale doesn’t mean it’s a better deal than getting the larger pack… bulk shopping won’t save them any money if the products expire before they use them… teaching them what sales tax is (if you live in an area that has it). Teach them early the difference between “WANT” and “NEED”.

Step 3) Practice, Practice, Practice

Talking about money with your kids can get extremely stressful so here’s some ways to make it easier:

Classes/resources:

Some schools have classes they can take. Ours offers “Dollars and Sense.” Thing 1 took it last year, Thing 2 doesn’t want to waste the school hours on it as she’s aiming to take college courses by her senior year, so she’s wanting to learn outside of school. Thing 3 will probably take it in high school, unsure about the other 2.

Some SNAP (Special Needs Assistance Partners) offices offers life skills programs that focus on how to purchase items and services they may need. Including, but not limited to planning ahead, becoming familiar with prices, taxes, and budgeting.

¢ents and $ensibility. This is a guide for people with disabilities regarding money management. It can be used by the individual or by their family as a teaching tool.

Practical Money Skills is an entire website for kids, parents, and educators to learn about money management. Under the teaching tab, there are lessons for special needs kids.

Check with your caseworker or regional offices to see what classes are available in your area.

Hands on Practice:

Let your kid practice buying things in a store with you there. When you feel confident enough to give them more financial independence get them a “debit card” you can control remotely.

We use Greenlight for Thing 2. She is entering into high school and is in extra curriculars. She has the freedom to be able to walk to the convenience store with her friends and grab a snack. She can access her card via her account on her phone so she always knows her balance so she can budget. Her card has her face on it as a protection feature. Any money she earns, she gives to us and we “load” it onto her card. We can give her any additional funds we want or as needed. We also have the ability to shut off her card if she is grounded or it is missing (in her room) or is lost/stolen. We can also restrict her purchases to disallow certain stores or only allow certain stores. As the other kids get older, we will get them cards as well. There is a monthly fee, but it’s per family, not per kid and rivals that of a checking account. I like getting the alerts of her spending habits so we can talk about her financial decisions. “Thing 2 spent $2 at Taco Time.”

I do have a referral code for Greenlight, if you click on the link or scan the QR code, you will get $45 when you set up your account. (This is as I write this, the amount may change in the future, a couple of months ago it was $30).

Board Games:

Of course you knew we were going to get to this…. this list is taken from several websites, but I have weeded out the more advanced games and listed them in the honorable mentions. The following games are sorted by age per the manufacturer, as always, the suggested age doesn’t always fit the age of your child’s needs.

Ages 5+

The allowance game

Ages 5-11, 2-4 players

Kids do chores to earn an allowance and can spend their money however they see fit.

Money management
Make change
Identify monetary values
Basic math

Exact Change

Ages 5+, 2+ players

It plays like UNO, except it uses coins and money in place of numbers.

Money familiarity
Make change
Basic math

Ages 6+

Buy it right

Ages 6+, 2-4 players

Kids learn how to make educated purchases and can set their own prices for items they sell. They learn how to correct errors.

Buy and sell
Identify monetary values
Make change
Basic math

Ages 7+

Money Bags

Ages 7+, 2-4 players

There’s not much to this game, except it a gamification way to encourage money recognition and counting of money. It also comes in a European “pounds” version.

Make Change
Identify monetary values
Basic Math

ice cream empire

Ages 7+, 2-4 players

It’s a competitive game to build your ice cream franchise across the board. Order and sell your ice cream at varying rates depending on location. The player with the most profits wins.

Entrepreneurship
Running a business
Inventory management
(Bonus) Geography US

Ages 8+

Payday

Ages 8+, 2-4 players

This game IS about finances and budgeting. The game board is 31 days long, but you can decide how many months you want the game to last. Each “day” has events such as a buying “deal” or “mail” which includes everything from bills to insurance offers. It even includes loans with interests. It’s thorough.

Earn and save money
Basic money management

Monopoly

Ages 8+, 2-6 players

I’m sure everyone knows what Monopoly is…

How it helps: kids have to lean the importance of budgeting their spending so they don’t bankrupt themselves. Cheat your taxes? Go straight to jail, do not pass go, do not collect $200.

Real estate basics
Buying and selling
(bonus) Anger management
(addl bonus) Who plays cut throat?

Confession, I refuse to play the board game because I am mean. I prefer playing the computer game because then I don’t have puppy dog eyes staring at me as I destroy them.

The Game of LIFE

Ages 8+, 2-4 players

Life happens…

Granted LIFE is more of a game of chance, you don’t manage your money as much as make decisions that impact your financial outcomes. They learn the financial consequences of losing a job, “kids are expensive pets”, car and mortgage payments, taxes, debt. Oh, the joys of life.

Controlled spending
Assets vs liability in a visual manner

This game is the most replaced game in our home due to tiny pieces… tbh, we haven’t replaced it…

Budget town and budget city

Budget Town: Ages 5+, 2-6 players

Budget City: Ages 8+, 2-6 players

These games are unique as as they were designed with special needs individuals in mind. Budget Town focuses on cash transactions. Budget City is more advanced, even includes five difficulty levels so you can tailor the game to the abilities of the player. This game introduces checks, credit cards, interest rates on savings accounts, in addition to cash. This teaches concepts like budgeting and banking.

Budgeting
Identify monetary values
Basic money management
Make change
Basic Math
Intro to banking

Honorable Mentions:

I was going to list a bunch of other games, but after listing 20 games, I deleted this whole section except ones I actually own or have played and can tell you why I can’t recommend them.

Act Your Wage (not a bad game, but you’re not supposed to go under your emergency fund… which is $1000… a disabled person on SSI disability is only allowed to have $2000 in assets. This game could cause undue anxiety as a result of unreasonable expectations if they expect to have a minimum of $1000 in their bank at all times.)

Catan (I like it, but it’s more bartering goods than money)

Machi Koro (no negative value repercussions, click for full review)

Video Games:

Video games are an excellent resource for kids to learn money management skills. There are no real life repercussions so they can learn from their mistakes in a safe environment without harsh consequences.

I discussed this list with the kids. We decided we would not list any games where you get money or loot from killing things, as that’s just not how things work in real life… so most RPGs are out, even if the store or trade system is excellent, but we just don’t see many treasure chests fall out of mobile skeletons these days. (There may be exceptions to these rules). I know people will say there are good sports games that teach money values, but we have no sports games in the home, so I cannot judge them.

The Sims

Ages Teen (due to WooHoo/sexual themes, crude humor/cartoon mischief, violence). Note: all “nudity” is pixilated out. However, there are mods out on the internet… so make sure you pay attention if your kid is computer savvy.

The Sims is probably one of the most expensive and expansive universes out there. The base game of any of them has you design your sim and you start from scratch. You have to help you Sim budget their funds to buy their first home, pay their bills, buy food, get a job, and slowly improve their skills so they can get promotions and find new opportunities. Through the series, more career paths have opened, reactions and AI are more realistic.

Budget skills
Realistic representation of money
Realistic consequences (hunger, utilities shut off, pets run away, CPS, etc)
Realistic goals and rewards

Thing 4 and I love playing this game. We still don’t have all the DLCs because it never ends.

House Flipper

Ages Everyone (except maybe one haunted house…)

The name is the game. Your job is to flip houses. Some have specific jobs they want you to do, some are yours free to design. There are several free and paid DLC available. The developer is also great and dropping a free special event house on occasion (holiday houses). This game teaches hard work yields results and when you “study” your market, you can yield higher profits. (Potential buyers tell you what they like and dislike). I will do a grander review of this game at a later date.

Money management, you can run out even on a job
You can set the currency (which is a cool feature so you can see average exchange rates)
The potential of real estate investment

Thing 2, 4, 5 and I love this game.

Slime Rancher

Ages 10+ (mild comical violence)

The game revolves around you rebuilding a farm and completing tasks. You use the money you earn and (should) invest it into better equipment so you can complete your tasks more efficiently.

Money management
Investing = potential

Thing 2 did a power point presentation to us parents on why she should have this game and why it isn’t a “dumb dumb game”. She loves the game.

Animal Crosing

Ages Everyone

This game disguises personal finances into a quaint adventure game. It’s not all fun and games, cutesy quests and décor

Mortgage, but without interest
the “Stalk” market

Thing 1 has every Animal Crossing game. Thing 2 has a few, loves New Horizon. Thing 4 originally had New Horizon, but got so frustrated with the game, she gave it to Thing 2.

Stardew Valley

Ages 10+ (alcohol and tobacco, simulated gambling, mild language, mild blood, fantasy violence)

Stardew Valley is a retro style game but with more modern color palates, making it beautiful. You manage a farm. Like most games on this list, you start with a very limited budget where you have to balance running the farm day to day and investing to improve it.

Money management
Investment opportunities
Entrepreneurship

Thing 5 loves this game. It’s growing on me as I grew up with Harvest Moon.

Graveyard keeper

Ages Teen (Fantasy Violence, alcohol, mild language, mild blood)

I wish I could say I was joking by adding this one to the list, but I’m not. It’s a weird one, it’s not for everyone. You are sucked into a portal and end up as a graveyard keeper. You make money by running your graveyard and other businesses, whether they be ethical or not is up to you. Hire (reanimate) workers to run your farm… (they’re zombies).

Money management
Investment growth
Entrepreneurship

The DLC’s don’t add to the money bit, but are great. Thing 2 and I love this game.

Almost any Real Time Strategy game

This isn’t all of them by any means, but these were the first ones we could think of

Age of Empires franchise
StarCraft
WarCraft (not to be confused with WOW)

Civilization franchise
Tropico
Sim City

Any Tycoon game (Zoo Tycoon, Prison Tycoon, Hospital Tycoon, Roller Coaster Tycoon etc)

Step 4) Stress the Difference of Plastic and Virtual Money

The most common issue I see is special needs individuals struggle understanding that credit/debit cards or electronic payments hold the same value as physical cash. Physically show your child your statements with the corresponding receipt so they can see they are connected. This is why I am such a fan of Greenlight over using a gift card. Thing 2 gets real time updates on her account balance when she uses her card. Even though she doesn’t physically have cash in hand, it is a constant reminder how much she really has.

Explain that using credit cards is a loan and you have to pay all the money back with interest. And always, ALWAYS talk about keeping card and pin numbers safe. Explain the scariest monsters in life are people (sadly) and there will always be people who will try to take advantage of their money either from your kiddo’s kindness or outright stealing from them. I admit this is always one of the hardest conversations I have.

Step 5) Mistakes Happen, so Let’s Catch Them While They Have Us

Every human being, even those without special needs will make financial mistakes. I remember running out of gas and it was a couple days until pay day and my mom having to drive 45 min to rescue my hide. College life, am I right? Who has gone through a phase of living on ramen and boxed m&c? Who is still in that phase not by choice? (not you Thing 1)

As you work with your kiddo, you will notice their financial strengths and weaknesses. Praise them for their strengths and continue to help them adapt with their weaknesses. Talk to them when they make mistakes, you don’t want them to be afraid of money or independence. Fostering independence will give them the best shot at life.

This isn’t going to be easy, I believe in you.

We’re having a heat wave…. but not a tropical heat wave.

School has ended. We unfortunately lost our older dog, Chessie, to a brain tumor. I won’t get into the specifics because it will make everyone cry, but I just wanted to explain my further delay in writing.

I’ve found as much as I wanted to do YouTube reviews, I cannot stand watching myself to edit them. I have no issues talking about games or answering questions, but I cannot spend hours editing myself. So for sanity purposes, I will rarely be posting videos.

As the daily temperatures are over 100, we cannot spend much time outside. So, [insert] indoor activities including gaming. A year ago, I did a blog on the benefits of video gaming in special needs communities. I said then I would do a review of older systems like the Nintendo Wii, the Sony PlayStation Move, and the Microsoft Kinect. I meant to do this in the height of the pandemic, but a heat wave seems like a good time, as well. (Due to the number of tables in this blog, I strongly suggest viewing this on a computer or in computer mode. I know all the lines are off in mobile version. It works okay on my husband’s android, and not well on iphone).

Why review old systems?

These systems were made with movements in mind using the TV screen. Unlike the newer switch, these were more durable… they were just built to last. Because they are older, if you go to a retro gaming store, you will often find these systems and games more affordable, which is a necessity for families with special needs kiddos.

I have owned all three.

Wii

Pros:

Can be used for rehab/therapy
Low cost, everything is a set
Gamification of motor rehab
Bluetooth capabilities
Lots of cool accessories… sports and car shaped ones… all sold separately
Can download retro Nintendo games for it…

Cons:

Not suitable for all conditions, requires hand use.
Requires calibration for every player
Large amount of titles appropriate for children
Base set doesn’t work well for full body movement, can be fooled and play while laying down and use like a remote control
The Wii remote uses infrared lighting and detection on the bar… its similar to the same technology as modern tv remotes (think Roku, they often use IR) and sometimes you push the button several times because of interference. This means basic interface… up, down, left, right sensors.

My personal experience with this was I could never get the sensor quite right. I was constantly having to re-calibrate it. We were largely not able to enjoy the more physically oriented games on it, and ended up playing some MySims games on it, thinking we needed to get used to the controllers. After beating those at 100% (while laying down with our arms propped on pillows because pointing the controller at the TV was never at the correct angle…) we decided to sell the system. Unless you get it to play old Nintendo games, I cannot recommend it for physical activity, especially a special needs kid. I want to foster enjoyment and independence, not frustration.

When I had mine, they didn’t have recharging stations for the controllers, I used rechargeable batteries. You are expected to change the batteries… constantly. The battery life didn’t last long with them.

Some people swear by the Wii… others have tried the other 2 I’m about to talk about and don’t look back…

PlayStation Move

Pros:

Rechargeable controllers, either plug into the system while it is on or use a charging station! 10 hour battery.
The PS Eye (camera) can locate the glowing orb in a 3D space, meaning not only can it tell where you are left and right, up and down, it can tell how close or far away you are.
High precision and accuracy
Rumble pack for player feedback
Unique accessories, all sold separately.
Compatibility: the Move controllers work on the PS3, the PS4, and the PS VR. (This means they’re not obsolete).

Cons:

Requires a PS3 or PS4
Sold separately from the PS console.
The PS Eye camera is not compatible across platforms, make sure you get the correct one for your console.
Joystick controller sold separately
Few games available outside of the use of “for the sake of gaming”

I thoroughly enjoy the Move. We have the joystick controller and the Wonderbook to go along with it. There are not enough Wonderbook titles, IMHO.

Here is a list of our favorite therapy friendly Move games:

Game:

What is it?

Specs:

Physicality:

You are a student at Hogwarts and attend spell classes. Your controller is your wand and the Wonderbook is your spell book.

Solo play

10+, 7 in UK

This game is one of the most gentle games there is. It does use the wand controller, but it doesn’t require the joystick controller. The entire game is played while seated in augmented reality.

our thoughts:

Love, love, LOVE this game. I will admit, I wasn’t a good student. I apparently almost always caught the drapes on fire when using Incendio… thus losing house points. LOL. While progressing through the story line, the book reads lore from the Potterverse aloud with animation styles similar to the story of the Deathly Hallows. Not enough games like this. I have embedded a video at the end of this section regarding the making of this game.

Once again at Hogwarts, this time in Potions class… with your Wonderbook acting as your potions guide.

Solo Play

10+, 7 in UK

This is still a sit down game requiring the lone orb controller.

our thoughts:

To be completely honest, this is a beast to find reasonably priced in the US, easy in the UK. We don’t have it, but want it terribly. As I’ve stated, there are not enough Wonderbook games, only 4, and of those 4, we are truly only interested in 2.

you follow a fun side story and play as Aragorn and Gandalf, the controller acting as a sword and staff.

2 player co-op

T for Teen for Fantasy Violence.

This does require both the orb controller and the joystick controller. Can be played seated the entire time. Easy enough my mother could play (with anoxic brain injury and mild strokes).

Most of the other Move games we have are for playing games. There is a variety of fantasy games where you use the controllers as wands or swords, most can be played while seated, which would work for wheel chair bound individuals. Most of these games are rated Teen and Mature, so outside the Wonderbook, a Move may not be the move you want to make until your kids are older, unless you also play.

Microsoft Kinect

Pros:

No controller needed! Just need the camera (If you don’t have voice set up, you may need the controller to get games started)
Has voice control you can use on many menus, including main menu of system.
Can be played in med and low lit rooms, will let you know if it needs more lighting.
Each gamer profile can be configured to fit the gamer’s physical needs. The Kinect will also auto recognize them.
No accessories needed.
Microsoft has designed games with the idea of therapy in mind, not only helping with coordination and mobility, but social skills and the ability to bond with their peers over video games.

Cons:

Camera sold separately, not compatible with multiple platforms. Sold separately for Xbox 360, Xbox One, and Windows.
Does not do well with tons of light, so cannot be played outside.
The more players you add, the more difficulty the Kinect has with tracking. Optimum is 1-2 players. 4 can be chaos, but is still fun.
Many games require the use of legs
More Kinect games are available for the 360 than the other platforms.

The Kinect is hands down our favorite. We originally got it for Thing 2 as a gift for physical therapy, which she was attending weekly. We lived in the south east on an island and she has a severe mosquito allergy. She had to stay indoors most of the time. The Kinect was a life saver.

We have a LOT of Kinect games, a majority of them being dance games because there’s no controllers! I will list some of the more unique ones outside of dance games, because I feel that genre is self explanatory. (Most of the dance games can host up to 4 players).

Game:

What is it?

Specs:

Physicality:

Fantasia: Music Evolved follows more conductor type movements. During musical pieces, from classical to modern music, players can modify it with different styles and featuring different instruments. The combinations are near endless, allowing for enjoyable repeat gameplay for music lovers.

The campaign mode is solo. There is a co-play mode, but the story is so much better played solo.

Rated 10+ due to some lyrics.

While it is designed to be played standing like a conductor, you can do this sitting, however, you may need some adjustments to allow for all the arm movements.

our thoughts:

This is Thing 3’s favorite Kinect game. The music is pretty enjoyable. I would have loved to have had more classical music. This game is largely underrated and we wish there was a sequel.

This game is the virtual theme park. The rides are mini-games. There are tons of things to do if you or the child isn’t particularly active that day, like search for hidden Mickey’s, collect autographs and photos, hug your favorite characters.

This CAN be played with 2 players, but works best with 1.

I don’t know why it says E10+, it’s 7+ in other countries. Thing 2 played it at age 4.

When “walking” around the park, only arms are needed, we have played it sitting down, but the mini games are often full body.

our thoughts:

Not only does this game encourage physical movement within your favorite Disney movies, it encourages social skills as your character interacts with the park characters. An example is you can ask for a hug either verbally or with specific non-verbal gestures. It reinforces waving hello and goodbye, shaking hands, etc. This was used as part of therapy for Thing 2. Other than the mini games, the background noises of the “park” while walking around are not overwhelming.

I will admit I played it in the middle of the night, I wanted all the autographs. ~sheepish grin~

This is somewhat like the Disneyland one, but with Pixar characters and less focus on a theme park, more on the minigames.

Up to 2 players.

E for Everyone.

Full body

our thoughts:

While cute, we definitely enjoyed Disneyland Adventures over this one. It was missing the magical feeling in the park. I know it sounds silly, since its a virtual park, but I’m just being honest.

This game follows the Fable trilogy as a mage, but less choices, more path led… so no more “Chicken Chaser.”

Solo play only.

Rated Teen (12+ in other areas): mild blood, mild language, violence

This game is made to be played while sitting. I will admit it is quite physical in the arms and upper body. I used this as part of my rehab and it was very affective, made me very sore.

our thoughts:

While this game is not designed for kids, not only small kids have disabilities. This is story enriched and is beautiful to look at. There wasn’t anything majorly offensive I needed to worry about for my kids (unlike the original trilogy).

Run a big cat and bear sanctuary and feed/train the animals.

It’s a better version of Nintendogs, Catz/Dogz…

Solo play

Rated E for Everyone.

Most care can be done while sitting. Some of the training requires full body movements and speech.

our thoughts:

This is a cute game, also probably one of the quietest games we have. The background sounds are peaceful without tons of music. Both Thing 2 and Thing 4 had issues with sensory overload when they were younger. This game was Thing 4’s favorite.

4 ways to play:

Jedi Destiny: Main story mode, become a padawan, use a lightsaber and the force to find your destiny.

Podracing: it’s racing podracers.

Rancor Rampage: mind control a Rancor and have them crush, crumble, and chomp.

Galactic Dance-Off: It’s a dancing game with parodies of modern music with Star Wars themed lyrics…

Co-op 2 players

Up to 4 for the dancing.

Rated T for Teen: Mild Lyrics, Blood, Violence

(If your kid is a huge Star Wars fan, this game is the least of your worries).

Depends on which mode you play. Podracing and Rancors require arm movements, while Jedi Destiny will require more movements overall. Dance obviously requires full body movements.

our thoughts:

I’ll admit, this game has some issues. If you are not a die hard Star Wars fan, pass and pass hard. The jedi controls are weird and cause some funny antics. We spend more time laughing at each other than we do actually progressing in the game.

I can think of better racing games than podracing… I like Rancors. ~shrug~

The dancing is debatable on whether it’s meant to be B-rated movie bad or Star Wars Holiday Special bad. I like B-rated movies. I haven’t been able to make it thought the Holiday Special in one setting yet. I was originally semi excited thinking of the cantina and Star Wars Galaxies… thought I’d get to be a Twi’lek dancer. Was in shock to see a bunch of storm troopers and bounty hunters dancing.

Boba Fett intro, Star Wars Holiday Special 1978

The Kinect is more versatile with a large game library, especially on the 360. I would suggest this route when looking into a physical video game.

Synopsis:

Wii

Sony PlayStation Move

Microsoft Kinect

Makes a better gaming system than a therapy adjunct.

The Wonderbook is amazing, but not enough titles for it.
Controllers are rechargable
Few child titles.
Excellent games that can be played from a seated or wheelchair position, but requires finger use for button.

No controllers
Lots of titles for kids of varying ages
Most games cannot be played seated
Almost half the game titles are exercise or dance games…
There are some really cool adult titles as well… we need exercise, too (Elder Scrolls V, to name one).

Another Hiatus… 6 Weeks of School Left

Since my last post, it’s been difficult to do any reviews. To be completely honest, we haven’t been playing many games. It’s been a struggle to get Thing 2’s grades up from the 1st semester so she could participate in the heavy duty band competitions (no pass/no play) and keep the grades up, while not having the other kids feel neglected. Sauin killed most of the plants, so to destress, I have been crocheting some fake plants he can’t kill… plus I can do that in the waiting rooms of the doctor offices.

We cleared out some of the games no one wants to play or kids outgrew during spring break… so here is part 2 of the Game Graveyard.

Game Graveyard/Retired Games:

Hedbanz and Hedbanz Act Up:

Ages 7+, 2-6 Players

Ages 8+, 2-6 Players

Instructions for Hedbanz:

Cards are shuffled and placed into a pile in the middle of the table. Players are given 3 tokens. You play “20 questions” while wearing the headband with a card on your head. if you guess correctly, you get rid of a token. If you give up, you take a token. The one to lose all their tokens first wins.

Review:

Those plastic headbands are a torture device. They never soften up, they stay perfectly round and are not human shaped what so ever. We even wore them over winter hats, baseball caps, etc, and still can’t tolerate them for very long. The novelty wears off very quickly. The game is also very frustrating when you have some kids who intentionally answer incorrectly or who don’t know the answer to your question, but refuse to say, “I don’t know”, so you or the other players will get frustrated when fruits/veggies are answered incorrectly or doesn’t know the difference between an herbivore or a carnivore. This game caused more fights among the kids than I like to admit. Was more fun with adults.

Instructions for Hedbanz Act Up:

This time the headbands are color coded with a matching dice. Each player gets 12 tokens to start. Shuffled cards are placed into a center pile. Each player grabs a card and places it in their headband. On a player’s turn, they roll the dice and that color shown will be the “actor” for a game of charades. (if the player’s own color is rolled or your have less than 6 players and no one is playing the rolled color, everyone is the actor). The player has 20 seconds to guess. If they guess correctly, the player and actor get to return a token to the “bank”. If they don’t guess, nothing happens.

Review:

Now you have those uncomfortable headbands on while moving around… and they fall off and come undone while moving around. We ended up not wearing them. Good idea, poor execution.

Bloxels:

Ages 8+, Solo

Instructions:

It’s not really a “game” per say. Yes, you can play retro style platform games on IOS and through Google Play, but it is also a game design program. You can build and play the games in the browser of the PC, but won’t by able to use the Bloxels sets. Those require the cameras on the smart phones and tablets. It is an output for kids to learn how to design and animate sprites (the characters), the environment, and the gameplay.

Review:

I can’t rave enough about this game/app.

Thing 4 started with this, but we have decided to no longer to keep buying iPads and have moved her to PC. She has since started to learn how to program games on Scratch and Python. She hasn’t decided if she wants to continue with Bloxels on PC since it now requires a membership.

With Bloxels, she has done some amazing stuff, like animating coins, making them spin as they did in the old Mario games, she’s made a mermaid’s tail swish while swimming… it’s amazing what she’s accomplished. Her favorite thing to work on is animating sprites. Bloxels is available for individual use or for use in the schools.

No Thank You Evil:

Ages 5 to Infinity, 2-5 Players or the Whole Family

Instructions:

It’s essentially D&D for kids… the stories are whimsical, the character classes are already flashed out, you can have pets if your kids understands the mechanics… It even teaches your child how to be a DM if they choose to go that route when they get older.

Review:

Super cute game. As a D&D fan, I enjoyed it and thought it was well executed and know several families of neurotypical kids who thoroughly enjoy it.

That being said, I do not have have neurotypical kids and found it to be a struggle. I was hoping it may help foster critical thinking skills and found it ended up causing more stress than not.

Example: There’s a scenario where they enter a dark room. They have a back pack (that’s essentially a bag of infinite holding) and in it is some stuff including a flashlight. I’m playing with 4 kids… not a single one use the flashlight. I remind them they can use their items. All of them said their items won’t be useful. I again remind them to look in their backpack. They refuse to use the flashlight. I flat out tell them to use one of their items… after telling them the 5th time and them repeatedly telling me they don’t need to, I had them lose a hit point for stubbing their toes for stumbling in the dark. To which 1 cried, 2 quit, and 1 didn’t understand… needless to say, its been a few years. Thing 2 wants to try it again. I’m hesitant, but I guess we will.

In closing:

The next 6 weeks we will be flying by the seat of our pants… Here’s to hoping I can start getting some gaming in this summer.

Today is World Functional Neurological Disorder Day. Thing 2 (Piper) was one of the people living with FND featured in an informational video. Her quote can be hard to read on smart phones, but says, “Everyone, regardless of ability or disability, has strengths and weaknesses. Know what yours are. Build on your strengths and find a way around your weaknesses.” The quote is from award winning teacher and author of Front of the Class, Brad Cohen. (Book and movie about his struggles as a child and young adult pursuing his dreams to become a teacher because of having Tourette Syndrome.)

Let’s Talk Dirty… Laundry

I’m sure most people are wondering why I’d make a post about laundry, but this site isn’t for or about “most people”. Special needs families often come across issues regarding laundry, sometimes it’s contact allergies, but the most common complaint is odor. We deal with body fluid more than most, spilled food, pet messes (because we have one cat who insists on peeing on everything that smells like human pee.)

Odors (meh, I’ll include stains in here, works the same):

In our house, we deal with night incontinency due to spinal cord damage, feeding difficulties resulting in spilled food, nose bleeds, hyper-diaphoresis (extra sweaty), teens/puberty, IBS, a senior dog, and that damn cat.

Separate your soiled clothes from the regular laundry: if anything is soiled with body fluids other than sweat and I can’t wash it immediately, I have a basket in the garage for soiled laundry. This helps maintain a fresh smelling house and keeps the damn cat away from it.
Rinse the mess: this is a must with blood or feces. They have to be hand rinsed first in cold water. For best results with dried blood, you can soak it in cold water overnight.
Wash with an enzyme destroyer: for said soiled laundry we use Nature’s Miracle, which is made for pets. It works great on human messes, too. Having worked in healthcare, I have used Odoban, but I have found that Nature’s Miracle works better (Odoban is also associated with that classic nursing home smell for me, which also still smells like human body fluids, so I can’t get on board). Also, if ANYTHING is strong enough to work on cat pee, it will definitely work on human… I fill the detergent area of the washer with the Nature’s Miracle, add NOTHING ELSE. Put the setting on the longest wash cycle you have, including soak, tons of agitation, and 2-3 rinses. I rarely have to re-wash them after this unless the laundry was urine soaked and sat for a while. (Anyone have kids that hide their clothes after an accident? We do!)
Wash other clothes, or wash again with a detergent that contains baking soda, AND use laundry sanitizer (not bleach): I have found Arm & Hammer works the best, even when I’ve used the unscented detergent. We also have several skin allergies and so far, no-one in the family is allergic to it. Lysol and Clorox both have laundry sanitizers Lysol is currently the only one with a hypoallergenic formula and kills more things than just bacteria (so I recommend Lysol). These kill 99.9% of all bacteria, including odor causing bacteria that like to sit in your sweaty or soiled clothes. Since COVID, these are often sold out in stores, but I highly recommend them. Use them in place of bleach for your washing machine.
Fabric softener and scent beads: If everyone in your family can tolerate them, I recommend using both, they keep clothes smelling fresh longer and they’re softer for people who have sensitivities to fabrics. I get the scent beads with Febreze in it, it also helps block odors. (NOTE: if you use either on materials meant to be absorbent, they will be less absorbent. IE, towels won’t dry you as well.)

Pro tip:
You can use the Enzyme Destroyer with your spot cleaner/carpet cleaner (Bissel or whatever). It works far superior to the “pet mess” formula that they make in their brand. You can also pour it directly onto a mess, and then use a wet dry vac after it sits. Can be rinsed the same way.

Lysol Laundry Sanitizers are more than just odor control:
*They kill 99.9% of bacteria, yes, some cause odor, but other cause infections:
Klebsiella pneumoniae, which can cause pneumonia, meningitis and GI-related issues
Staphylococcus aureus, which can cause staph infections
Salmonella enterica and Escherichia coli, foodborne pathogens that can cause gastroenteritis and systemic infections
Proteus mirabilis, which can cause urinary tract infections (UTIs)
*They kill 99.9% of fungi and yeast. This will help get any fungal or yeast infections under control. It even kills Ringworm!
*It kills many viruses after 5 minutes in presoak, this includes SARS and COVID, which many people are concerned about when using laundromats.

Recommendations:

Enzyme Destroyer

This is our go to for the laundry and for the senior dog accidents.

I’ve rarely had to use this one in the laundry, but it works great for the damn cat for things that can’t go in the laundry.

bonus

If you have a jerk cat that insists on peeing where there have been accidents, this is a must.

Detergent and sanitizer

This is our go-to. They Oxi is a must for stains, works well on food and blood stains. (Nothing really works on skid marks… buy dark underwear for that individual and make sure they’re always sanitized).

hypoallergenic – This is great for those with skin allergies or for washing items next to the face (like face masks)

fabric softener and beads

I prefer Downy over other brands. My grandmother always used Snuggle when I was growing up, and I found it flaired my eczema.

The ones with Febreze are far superior with odor than ones without, which just cover smell up like perfume.

Bonus

We use the spray for those with distinct odors due to their medical conditions or excessive sweating. It helps their clothes continue to smell fresh even when their deodorant stops working.

random cleanup

Smelleze. Think kitty litter, but for human body fluids.

Prevention:

Besides the washing methods above, the only prevention is soiling prevention.

Bed soiling:

waterproof mattresses

Waterproof mattresses are made with incontinency issues in mind. They often come in a variety of styles and sizes depending on how long the person is staying in bed or how soiled the bed might become. These are more comfortable than hospital mattresses and sometimes still fall under DME for insurances. You can often count it as a medical expense if you are purchasing out of pocket. Logo’s below have links to their sites.

SaniSnooze has a variety of options. The children mattresses start at a little over $300. They’re antimicrobial, antibacterial, and hypoallergenic. These are on our wish list. The vinyl cover has a more fabric look and feel.

This is the same brand that makes Sanisnooze, but these are the more economically priced ones. They do not say hypoallergenic, and the mattresses have covers and zippers which are known to fail after time, but they sell replacement covers…

The prices are about the same as Sanisnooze. The mattresses are covered in a thick, hospital grade,
waterproof vinyl.

mattress protectors

Of course, if you can’t afford a waterproof mattress, you can make your current mattress waterproof with mattress protectors.

Easy to clean:

Vinyl or plastic covers are the easiest to clean by simply wiping them down, but if you have a person that sleeps hot, these will trap the heat in and can make them extra sweaty.

machine washable:

These are more comfortable to sleep in, hands down. Everyone in our house has at least one of these on their beds just in case of spills or accidents (even us adults). The downside is if you want to have them lasting a while, they need to air dry, meaning you will often need more than one. The drier will break down the waterproofing and it will fall apart over time. Also, you get what you pay for. Cheaper ones, especially the ones with the lining will break apart over time if the sleeper is a restless sleeper (one kid shreds theirs in their sleep).

pro tip:

Get the crappy vinyl or plastic waterproof one for those who regularly soil or heavily soil their beds. Then put a plush waterproof one over that. The plush one can be washed, the other stays on the bed… and have extras of the plush one so you can easily remake the bed without worrying about accidents while it’s in the laundry.

chucks pads

disposable:

My suggestion is don’t use these unless traveling, or use on furniture and not the bed. If you use them on the bed, put them under the sheet above the mattress protector, but don’t have them make skin contact.

reusable:

There’s your standard fabric, washable chuck pads that are available almost everywhere. They have fabric toppers and vinyl lining. I’m not the biggest fan of these. The fabric is often stiff or scratchy which doesn’t work for people with sensory issues. I admit, I got spoiled with fabric ones from Babies’R’Us years ago that have the waterproof material sandwiched between layers of soft fabric. Alas, Babies’R’Us is no more, but I’ve come to love Target’s brand. They’re super soft and huge! (Koala Baby is the brand we used to use. They have branched out to other stores, but their waterproof pads are often out of stock, they do have waterproof mattress protectors for crib/toddler mattresses and they work great!)

diy chucks pads

The link contains instructions to make your own. They are double layered, but if you want to hide that waterproof layer, all you would have to do is put fabric on the other side as well.

incontinence underwear

Although I am inclusive to all gender types, incontinence underwear is often designed for the plumbing a person has, not how they identify. So please understand when I say boy/men, it means there is more protection in the front and girl/women has more protection between the legs. Shop accordingly. Many brands may be designed for women, but have options such as boxer briefs/boy shorts. There aren’t many other options for men other than boxer briefs or briefs.

disposable:

These include toddler training underpants, overnight underwear, and adult ones. There are many brands, they’re available almost everywhere, AND they are covered under DME by your insurance (unless you have Tricare because they won’t cover ANYTHING regarding incontinency).

I recommend these for night time use as they hold more than “leak proof” cloth underwear. Daytime use if the person wearing them has absolutely no control.

Bladder leakage pads also offer some protection and fit in normal underwear or can be layered in disposable underwear for extra overnight protection.

reusable:

Outside of the bulky training pants you see for toddlers, finding these are hard in child sizes. They’re great for minor leaks and they fit just like regular underwear, so it boosts their confidence. There are more available in adult sizes, but you have to filter through all the period underwear. The fabrics are also better for skin. Do not use fabric softener with absorbent materials, they will lessen the absorbency.

I do not recommend the plastic underwear covers. They trap heat and moisture in and create the perfect breeding ground for infections.

There are many types advertised as incontinence underwear, but unless it specifically lists the amount of absorbency it has, they are only meant to be worn WITH a pad or some other kind of protection. It’s very misleading. Also note sizes are weird. When I write teen, some of them start at 14-16, others as small as 10-12.

Some popular brands are:

kids:

There just aren’t many options.

Unisex – all ages – This brand doesn’t specify the absorbency amount, but they have multiple options including cloth diapers in kid and adult sizes and the ability to have additional absorbency pads in place.

Unisex – all ages – EcoAble has cloth snap diapers from baby to adult including an assortment of reusable absorbent pads.

Unisex – kids (4/6 to 14/16)/women (6 to 26)/men (up to 4x) – Conni brand underwear is for light bladder leakage only.

teen/adult:

There are more products for women than men. I don’t know if this is because leakage is more common in women or men just don’t talk about it.

Men – teen/adult – Modibodi also has a men’s line.

Women – teen/adult/up to 2x – Holds around 30 ml, comes in various styles and patterns.

Women – teen/adult/up to 5x – minor leakage, up to 8 tsp or 40 ml

Women – teen/adult/up to 4x – Knix has underwear that holds up to 8 tsp or 40 ml

Unisex – teen/adult/up to 4x (3x for men) – ONDR has styles for men and women, that start at an absorbancy rating of 6 tsp (30 ml) going up to 9 tsp (45 ml).

Women – teen/adult/up to 3x – Proof has styles that holds up to 10 tsp or 50 ml of bladder leakage

Unisex – adult/max of 1-2xl – PROTECHDRY doesn’t have much as far as style or patterns, but they do have a male and female line along with being able to hold up to 60 ml.

I’m sure there are others, but those are the ones I hear the most about or can read reviews easily for.

I know this post was absolutely no fun, but I hope it helps in some way.

Games Graveyard and Thing 2

Christmas is over. We got a bunch of new games we don’t have room for. That means we need to stop getting games.

Yeah, no. We retire games. Some games are packed away for future grandkids that we can’t part with because they have sentimental value, but the kids have all outgrown, others we pass down to other kids in the family or family friends when ours have outgrown them. It’s a great tradition. So before these games leave our house, I can talk about why.

Retired Games:

Skip-Bo Junior:

Ages 4+, 2-4 Players

Instructions:

Just like regular Skip-Bo, but with open hand of 3 cards. If you can’t play the 3 cards, you deal more cards onto those 3 cards (there is no discard stack in front of you unlike Skip-Bo). Cards go up to 10 instead of 12, there are still wild cards. The first player to get rid of their cards wins.

Review:

I’m not a fan. I was raised with Skip-Bo since I was a small child. We did open hand. The rules made this over simplified without the stack to pull from. Also, having Thing 2 and Thing 4 with Autism, they were overly distracted by the bugs on the cards (already knowing their numbers). We found it easier to just pull out cards 1-10 of the original Skip-Bo deck and play the original game with modified rules.

When I remarried and had step kids, never played it with them, always played the original Skip-Bo. It might work better with neuro typical kids or kiddos with different issues.

Clue Junior, the Case of the Missing Prizes (note, there are tons of Clue Juniors): (Cludo for everywhere else in the world)

Ages 5+, 2-4 Players, 20 min average playtime.

Instructions:

Each player moves their character around the board trying to get to ride at the carnival (where the clue cards are). When you arrive, you can look at the clue cards and mark them off your clue sheet. After every player has taken their turn, they put a “guess” token in the “guess” slots guessing who and when the prizes were stolen (and where for advanced games). You play until all 10 tokens are used (9 for advanced games). Reveal the winner by opening the “truth envelope”. Place the gold tokens in the matching slots. Which ever player that placed the most guess tokens in that guess tray wins!

Review:

So, I had seen some Clue kid games where it was a nice intro to Clue, it still had the paper check off sheet they had to fill out and it was still basically the same game, but easier… this wasn’t that game.

The guessing part ruined it. One of the kids hated it so much, to prove a point, they wouldn’t ever move their character to find clues, they would just make guesses based on other players guesses and they won 1/3 of the time. The game sucks. If we ditched the guessing part, it was ok…. do your research and get a different Clue Junior game.

I won’t be passing this one on to a family member… I loathe it so.

Also available:

Case of the Missing Cake – no guessing tokens

Case of the Broken Toy – no guessing tokens

It’s the same awful game with new packaing….

Eye Found It! Disney:

Ages 4+, 1-6 Players

Instructions:

Each player chooses a character mover. Start on the “Start” space. Use the “search cards” to find your objects, mark them with your markers (mouse ears for Disney). Race to the castle before the clock reaches midnight. If one player makes it, everyone wins (teamwork).

Review:

We loved this game. The board is 6 feet long. This allowed for several players room to play and for them to easily cooperate by designating search areas. It was an easy enough game where they could play on their own as well. That being said, my kids also love ISpy, Look and Find, and Where’s Waldo… We did have to forgo the small timer during searching, it did not do well for the kids with anxiety.

Searching games help with memory, focus, object identification, reading skills, matching skills, and this one in particular helps with teamwork and cooperation. This game has lead to a love of Hidden Object Games for some of the kids. (see my review about HOGs).

We are debating on passing this down in the family or packing it up for future grandkids. Oh the choices… but will I want to get on the floor by then… hmmmm…

Also available:

Minions (I expect this one would be hard… so much yellow)

Most of these are also available in card/travel form as well.

Cranium:

Ages 16+, 4+ Players (team play)

Instructions:

Reader’s Digest Version: It’s a party game, split off into teams, pairs are ideal. There are 4 categories, art, acting, trivia, and words/english. The rules are a combination of other games based on which section you are in…

There is another version for players 8+

Review:

I thoroughly enjoyed Cranium when it came out in 1998 and throughout college. That being said, it is not the game for us in my family setting. Having children who are NOT neurotypical, they do not switch from subject to subject well, and some struggle in other subjects and want to avoid them completely. This game ends up being the source of a lot of anxiety for them. That’s not what gaming is about.

Thing 2 Update:

Thing 2 had surgery on her sinus. she is miserable, but not as miserable as she was. she can finally smell again, meaning she can also taste food. Her chronic headache is finally gone. Although she is in pain from her surgery, it is a different kind of pain. I look forward to seeing how she progresses from here.

Sorry this is a short update, but I haven’t slept much as I was stressed prepping for her surgery. Hope to get back into a schedule soon.

The unexplained explained – hidden insurance perks for your special needs kiddos.

It’s the end of the year and the holiday season, you know what that means? Insurance policies change! You thought I was going to mention something fun, didn’t you?

Bah Humbug… a majority of the plans change around the beginning of the year, as I’m sure you’ve heard/seen on tv, the radio, or any electronic device hooked up to the outside world.

Having worked in healthcare, done medical billing, and being a special needs parent, I get asked about hidden perks or things that are available that’s not well known. Let’s dive in!

Please note, if you do not live in the United States and are receiving universal healthcare, this whole article will NOT make any sense to you.

First and foremost!!!!

Many people don’t know that MOST insurances have caseworkers available. You can request to be assigned to a caseworker. Said individual will help you with insurance claims and getting the items/care your kiddo needs. This is also available for adults, it’s great for people with disabilities.

I do not believe Tricare offers this. I haven’t had much luck with that, however, we have a caseworker with Thing 2/4’s secondary insurance. She checks in every 4-6 months, unless we need something. She goes to bat for us with the primary insurance, directs our call to the right department if we are having issues with claims/prescriptions, and best of all… she will communicate with the doctors’ offices to obtain prescriptions for health supplies/DME and coordinate with a DME supply company.

Medicaid

Medicaid is an insurance offered to children that fall into a certain tax bracket.
If your child qualifies for Medicaid based on house income only, you might lose it if you get another health insurance. The income levels vary at that point. Speak with a Medicaid rep if you are thinking of getting healthcare through the marketplace or work.
If you child has the special Medicaid for disabled children (there’s a list of qualifications, receiving SSI as a disabled child is the most common), you CAN have another health insurance, and is often encouraged. This may vary in some states, but please consult with someone.

How does the Affordable Healthcare Act affect me:

Previously, having any one with medical issues was a nightmare for obtaining medical insurance. People would get turned away for having pre-existing medical conditions or would have to pay premiums for 3-6 months before even being allowed to use their insurance. I remember this well because my thyroid died when I was in high school. When I obtained insurance through my then job, I was not allowed (per the insurance) to use it for 6 months all because I have a pre-existing condition. Mind you, 20 years ago, levothyroxine was less than $10 a month at the time without insurance. Even now, it’s less than $20.

Insurance companies MUST cover mental health. This is a huge win because many people with chronic illness or disabilities suffer from anxiety and/or depression and even medical PTSD. Caregivers can have caregiver PTSD or burnout.

Insurance plans must include at least a basic prescription plan. No more having to add on 50 million options to your basic crap plan.

Your insurance covers your child until they are 26, sometimes longer if they are disabled or special needs.

Durable Medical Equipment (DME):

What is Durable medical equipment?

Durable Medical Equipment is equipment that

is Durable (can withstand repeated use)
Used for a medical reason
Not usually useful to someone who isn’t sick or injured
Used in your home
Generally has an expected lifetime of at least 3 years, (some insurances require 5)
are ordered or prescribed by a physician

Examples of DME:

This includes, but is not limited to:

wheelchairs (manual and electric) and scooters
hospital beds
traction equipment
canes
crutches
walkers
kidney machines
ventilators
oxygen equipment and accessories
monitors

blood sugar meters
blood sugar test strips
continuous passive motion devices
continuous positive airway pressure (CPAP) devices
pressure mattresses
lifts
nebulizers
bili blankets and bili lights
suction pumps
breast feeding pumps
adaptive and assistive devices/technology*

* Adaptive vs Assistive devices/technology:
Assistive technology refers to “any item, piece of equipment, or product system, whether acquired commercially, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities”. These can be harder to obtain through insurance companies.
Where as Adaptive tech refers to items/equipment that are specifically designed for persons with disabilities and would seldom be used by non-disabled persons.

Adaptive tech examples

Screen readers – allow the visually impaired to easily access electronic information
Braille and Braille Embossers – a printer for braille
Large-print and/or tactile keyboards – the large print is self explanatory, but the tactile keyboards have additional raised portions on the keys (think of the bump on keys “F”, “J”, and num pad 5 on a standard QWERTY keyboard.)
Amplified telephone equipment – allows users to amplify the volume and clarity of their phone calls. Some have the option to adjust the frequency/decibel for those with specific hearing loss.

assistive tech examples

Adaptive Cutting Equipment – Cutting aids help make working in the kitchen much easier for one-handed people or sufferers of strokes/hemiplegia.
Holders – peeling plates for one handed peeling, pot and pan holders to prevent spills while cooking, etc
Non Slip Mats – often used for writing/drawing and prevents the page from sliding around on the table
Dinnerware – suction plates/bowls to prevent sliding while eating, equalizing spoons/forks for individuals with tremors, etc
Openers – one handed bottle and jar openers
Augmentative and Alternative Communication (AAC) Devices – one of the most requested assistive technologies, it’s a tablet or laptop that helps someone with a speech or language impairment to communicate. I will do a separate section on AAC.

How to get DME:

This part is pretty straight forward, only not. Your healthcare provider will write a prescription for said DME. Then you have to find an DME supplier that accepts your insurance. The supplier will work with you and your insurance to get the DME approved or find acceptable alternatives. (Or you can have a caseworker through the insurance company and they will do the leg work for you).

Don’t be discouraged if the insurance denies it the first time. You and your provider may have to provide additional documentation so the approval board will be happy. (Or get a caseworker….)

(Get the caseworker).

If insurance is a no go, there are tons of grants out there for various equipment and diagnoses. They are too numerous to add them all. I will list the ones for AAC below as it’s own topic.

Value Added Services:

What is a Value Added Service?

These are services that hardly anyone knows about that are available through your insurance and sometimes even your employer. Each insurance/employer has different services available, so you will need to specifically ask for “Value Added Services.”

These services often help patients with long term care by helping change behaviors vs throwing meds at every problem (which can be costly for the insurance and side effects can be a detrimental to the employer).

A common thought is providers don’t want to prescribe several pricy medications for something that will persist without intervention or behavior modification. (there are some outliers as you will see)

Examples of Value Added Services:

Not everything on this list is covered by every insurance or employer. I am also not listing everything that is available. You will have to request a list of what is available for you. Your caseworker can assist you with this. (How do you think I got all this info?)

Adherence and disease management programs – this often includes a treatment team (providers, nurses, specialists, pharmacist, dieticians, psychologists, etc) to ensure you are educated about your disease and are adhering to your treatment plan to best optimize your health with a chronic condition. Chronic medical conditions often included in this are:
- Diabetes Mellitus
- Congestive Heart Failure (CHF)
- Chronic Obstructive Pulmonary Disease (COPD)
- Coronary Artery Disease (CAD)
- Asthma
- Hypertension
Reimbursement assistance – they do a host of things, but most commonly are used for help covering copays and deductibles.
Data products for payers and manufacturers – analytics, numbers, stuff
Infusion therapy – simply put, home IV services
Physician education and support – required and bonus Continued Medical Education (CME)
Patient education and support – your discharge and summary papers are included under this. The staff or nurse will confirm you understand your instructions, give you a copy, and sometimes follow up with a phone call.
Patient lifestyle management – this can include support groups, classes, having a caseworker (not the kind I keep mentioning).
(my favorite) Special Needs Summer Camps – camps designed for people with disabilities or special needs. They often have specific diagnoses they take. I found out this was covered by our caseworker. I have a list of camps (that were still running summer 2021, as many shut down due to Covid).

The most requested – Augmentative and Alternative Communication devices:

So, these can be hard to come by because many times insurance companies will argue there are no-tech or low-tech ways to use Augmentative and Alternative Communication. They include:

gestures, pointing, and facial expressions,
writing,
drawing,
spelling words by pointing to letters, (Ouiji bord?!)
pointing to photos, pictures, or written words (eg: PECS or Picture Exchange Communication System)

These of course can be issues with mobility problems, Pervasive Developmental Disorders (body language is a no go), reading difficulties, and new situations an individual is not prepared for.

High tech AAC:

using an app on a tablet to communicate – most common wanted is an iPad
using a computer with a “voice,” sometimes called a speech-generating device (SGD). –
- eye gaze devices – these are for individuals who still have their mental facilities, but have extreme physical limitations. Common brands include Tobii (I’m not crying, you’re crying), and Eyegaze.
- portable electronic PECS – Lingraphica is a brand that is often approved by several insurances and is highly personalized with the words you want.

How to get an AAC:

insurance

I implore you get a caseworker. They have more pull in the insurance world than calling customer services.

The electronic PECS and SGD are easier to get because they are not used by non-disabled people. The hardest to get is a smart device, like an iPad because non-disabled people can use it. Many assume because it is less expensive than other AAC, it will be easier to get one or pay for one out of pocket, but they’re still pricey.

Most of the medical documentation is provided by the health care provider for AAC’s, however, should you fight for an iPad, you have to give clear reasons specific to your situation as to why an iPad would fit your needs. You will still have to be backed by a professional (letters of medical necessity).

List the cost of the iPad
list the apps you need and why
list the cost of said apps
attach any articles you’ve found regarding iPad and your child’s diagnosis (the more academic, the better)
attach any articles you find relating how the apps are beneficial (the more academic, the better)
educational necessity, as in the device will allow for your child to participate in a Free and Public Education (FAPE)

School

If the insurance route fails, schools can provide an assistive device. However, the device is still property of the school and you will have to receive permission to have the student remove it from the classroom/school. (Many school districts have pre-K available at age 3 for special needs children, after they age out of Early Childhood Intervention or ECI).

1) request for an evaluation by a professional knowledgeable with AAC’s. They will test your child with various AAC devices and make a recommendation for which device your child was able to work well with.
2) request it to be a part of therapy
3) amend your child’s IEP to include said device. Specify if you are able to take it home and what apps are allowed if it is a smart device. refer to How I do it: AAC in the IEP

grants

If all else fails, grants are often available to get an AAC for your special needs kiddo. Look around, ask your caseworker and providers. Hospital affiliated social workers can also be a help. I didn’t list ones that only serve specific counties as the list would be too long. Be sure to check in your local area if these don’t work for you.

iPads

Little Bear Gives accepts applications for fully loaded iPads for children with CVI (Cortical Visual Impairment)

Different Needz does fundraising throughout the year to provide grants for DME for children.

Cerner Charitable Foundation, formally known as First Hand Foundation, offers grant funding for medical costs, equipment, vehicle modifications, or displacement.

Friends of Man helps with DME, glasses, dentures, hearing aids, etc.

Autism Care Today is a grant program specifically for children with Autism to get iPads and other assistive devices, ABA therapy, safety equipment (like GPS trackers), social skills learning, and special needs summer schools.

Danny’s Wish raises money so they can assist with children with Autism getting iPads.

National Autism Association has grants for a 32 gb iPad, extra protection plan, the Avatalker AAC app, and a protective case.

not a grant, but Apple offers a Trade in program for old devices when purchasing a new one.

speech generating device

Different Needz does fundraising throughout the year to provide grants for DME for children.

Cerner Charitable Foundation, formally known as First Hand Foundation, offers grant funding for medical costs, equipment, vehicle modifications, or displacement.

Friends of Man helps with DME, glasses, dentures, hearing aids, etc.

Small Steps in Speech offers grants for AAC excluding iPads.

AAC Funding Help lists insurances known to regularly approve SGD and other ways.

your friendly, neighborhood Charities

If all else fails, you may need to contact a local charity who may help with funding or fundraising. Another option is a service club, they are designed to serve their communities. Like Lions and Shriners and Elks. Oh my!

I’d say look in your local yellow pages to see what clubs are in the area, but that would be dating myself.

Important Update!! 12-19-21:

There is a free app available to use across all platforms. It is not customizable and requires internet access as it is via the browser, but it is a good alternative while you are working on getting an AAC device.

In closing:

I know this post was long, boring, and tedious, but I am hoping I helped in some way.

Enjoy your holidays and stay safe out there. Deal with insurance stuff next year. ~wink~

Can’t catch a break and other holiday antics.

Thing 2 has had a setback, again. We believe it was triggered by a huge cyst in one of her sinuses, which turned into a massive sinus infection and another ear infection. Not to mention all the antibiotics and steroids. We are hoping to have it drained in the near future.

Poor thing is dealing with severe pain in her sinuses, her face swells on that side, dizziness, and constant headaches. It has affected her eating as she likes spicy foods. What happens when you eat spicy foods? Your nose will run. Hers cannot as the cyst is blocking the drainage to the nose, thus just causing more swelling. Ug.

In addition to that, she’s had neurological symptoms. Her Tourettes was out of control in October, we thought she was having seizures, she forgot how to do almost all of her school work routines and even how to play her instrument (she did regain her ability to play, but the rest is still suffering). It’s been a really rough time. She even couldn’t perform ADL’s for a couple of weeks. Doctors wanted her hospitalized, but our local children’s hospital converted half the wards into Covid wings. Because she was having neurological and psychological symptoms, they wanted her in the psych part of the hospital, but they were shut down to teen patients, sending all others to strictly psych hospitals (which doesn’t help when symptoms are caused by medical issues).

Answers, Finally:

However, on the bright side, with all these urgent appointments with specialists, we FINALLY have a diagnosis for her wax and wane symptoms. Functional Neurological Disorder. We have been looking for a diagnosis for 12.5 years.

“We know very little about the brain. We know about connections, but we don’t know how information is processed…”
Neurobiologist Lu Chen, PhD

The brief description is Functional Neurological Disorder is a disorder in the somatic nervous system, that’s the system where the brain and body communicate for sensory input (the 5 senses) and voluntary movement. They’re not sure why there is an issue on the somatic nervous system, but each person has their own triggers. Some people have this reaction in result to emotional stress, some to physical stress or illness, others to medications, some to heightened emotional states (like excitement). Thing 2’s triggers are illness and some medications. In her case, imagine that you would have pain from an infection in your ear. She often doesn’t realize there is an issue until it ruptures. While she should have a fever, she rarely has one anymore, however, she trades her normal illness symptoms for neurological symptoms and psych issues. It makes no sense, but the neurosciences is in its infancy compared to other fields.

Now, over the years it was NOT classified as a neurological disorder. Remember hearing about “female hysteria”? Current neuro specialists and those who study medical history believe it was Functional Neurological Disorder. Conversion Disorder? Also FND. The problem is because it was classified as a psychiatric disorder for so long and it is being transferred to being neurological, it still carries the negative stereotypes. Spread awareness. Remember, epilepsy was once thought to be hysteria or demon possession.

Because FND has an unknown origin, there is no treatment or cure. People will have relapses that can last from days to years. The only thing that can be done is treat each symptom individually. Therapies out the wazoo, medications for the physical, neurological, and psych symptoms, assistive devices if needed. It can be as disabling as Multiple Sclerosis and because of the stigma, very lonely.

Other news:

Thanks to autoimmune issues, I’m having to completely change my diet. So if anyone needs some tips about minimal salt, 0 saturated fats, and 0 added sugar, but NOT have your meals be depressing and taste like dogfood, I’m relearning how to cook.

This meant I was struggling for Thanksgiving. I gave up and made a buffet with tacos, burritos, and fajitas. Everything I could have except the full fat sour cream and the cheese blend. I didn’t make the cheese, sour cream, or tortillas, but I made everything else. I made the taco meat with turkey, so that counts, right? Tilapia, shrimp, mango salsa (don’t knock it), guacamole, salsa… It may be our go to Thanksgiving meal. LOL All the kids ate it.

Now, what to do for Christmas?

When is the next post?

I’ve been working on an informational post by request about health insurance (blech) and things you can get through them or via other means. The most common question is iPads. Since many insurance programs start at the beginning of the year, I’m hoping to dish the skinny in a day or two. Please leave a comment with any questions you may have and I will include it.

	Money Makes the Worl… on Machi Koro
	Fairy Queen on Honey Bee Tree
	Games Graveyard and… on Summer is too hot… and…
	Holli S. on Just a Little Bit Longer…
	Lori B Doyle on Just a Little Bit Longer…