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Living with Autism

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March 30, 2015

Autistic Adults in Hospital Settings

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Oh, we've been here. And back. Many times. A trip to the ER room. A hospital stay. Overwhelmed RN's who have never dealt with an autistic patient with epilepsy or self-injurious behavior. CNAs assigned as "sitters" who think every curious move is a seizure and every vocalization means pain. It's maddening, really. And dangerous to the autistic patient. There's just no way to teach strangers everything they need to know that fast.

For instance, the time our autistic son wanted to get out of the hospital bed, but each time he tried, he'd be excessively medicated with Ativan, so he couldn't get up.

The solution we came up with to avoid excessive medication during hospital stays is to have our own trained people who know our son by his side during the ENTIRE hospital stay. And the state can pay for it because it's needed to protect him. And he has a legal right to be protected in every setting.

Trained staff knew when to it was "safe" to allow our autistic son to take a short walk to relief anxiety and meet his sensory needs.

Trained staff knew when he was hungry and thirsty. Knew how to feed him to avoid aspiration. (One hospital CNA had no clue and kept shoving food into his mouth, while he was having myoclonus seizure activity.)

I also recall the time our autistic son was in hospital and the CNA "sitter" thought it was "okay to let him slap his legs", to the tune of hours of non-stop slapping that resulting in severe bruising to the leg. That's when we decided, oh, hell no, we are sending in trained staff to protect and assist him. This  is insane.

And you can't blame the hospital staff. They don't know him. They haven't been trained to deal with autistic patients who have complex medical and behavioral issues. So, you  must come up with creative solutions.

Below is a helpful article showing what a delicate situation it is when you have an autistic person who can't speak, needing medical attention:


Excellent article about the dangers of overlooking illness and injuries in NON-VERBAL autistic individuals.


http://www.theguardian.com/lifeandstyle/2015/mar/29/autism-ill-health-learning-disabilities-non-verbal-patients#comments



March 12, 2015

You Might Be an Autism Parent If...

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         You Might Be an Autism Parent if:



You've had to give up pursuing a career or working outside the home because you can never rely on respite services being secured or delivered in an effective manner. 

You have had to drop college classes, skip church, cancel gym memberships or miss dental appointments because you couldn't find anyone qualified to watch your autistic child. 


You have waited in line at a pharmacy more times than you’ve waited in line to use a restroom

You prepare 3-5 different meal choices daily. 

You know one does not simply “place an autistic child in a group home”

One does not simply "visit the doctor" "to see what's wrong." 

If it takes 3 people, 30 minutes to get your child to stand still to take one x ray, but he'll sit calmly during an extended blood lab draw.

You have had more conversations with doctors than friends

Your child takes 45 minute baths

You spend more time with the washing machine than your husband

EVERY month is autism awareness month

You shamelessly rely on family pets to mop up spilled food and drinks

You play music all day to drown out jungle sounds your child makes

When you say you don’t give a damn what others think, you mean it

You spend more money on VITAMINS and SPECIAL FOODS than you spend on GAS

You discover that an epileptologist is a neurologist who specializes in the treatment of epilepsy, because not all neurologists do

Psychiatry visits are more helpful to you than your child

Your child can't dress himself, but he can remember where to walk five years after he's been somewhere

Your child hasn’t slept for more than 2 hours, but is able to walk five miles

Your child is an adult, but still has the mind of a toddler, but the strength of a grown man

You cry at awkward moments and only other parents of autistic children know why

There is always something to worry about on an hourly basis

You’ve had to remind hospital staff that an autistic adult will not gladly stay in bed all day

You’ve had to remind doctors that autistic patients are not hospice cases, so yes, they’re Full-Code

You've ended up in a courtroom to get your child the services he/she needs

When your biggest fantasy is to reside in a city where everyone understands autism and every hospital has an “autism wing.”

You have lived with autism so long, you exhibit signs of autism

When you hear others say they went on a “family vacation”, you need a translator because you don’t know what that means

You hoping wine has more health benefits than the government is willing to admit

When you read stories of other autism parents struggling your heart melts because, well, they’re family

You feel as if you live in a subculture that only other people raising children with autism understand

You are amazed how other moms can wear artificial nails

You are annoyed with fiction, because you are always in "non-fiction" mode

You can instantly spot a person who isn’t on the autism spectrum, but is labeled or called autistic

You can spot someone who is on the autism spectrum

You have developed super-sonic  hearing

You have a complicated relationship with God

You have learned ABA is not just for children with autism, it's for adults, too

You have charred more than one dinner being interrupted to handle a behavioral emergency

Your recycling bin is filled with mostly items from Sprouts, Whole Foods and Trader Joes

You’ve witnessed the most diabolical and angelic sides of humanity

You’ve learned the hard way not to trust certain people with your autistic child

You know some high functioning autistics as the funniest comedians you’ve ever heard because they possess incredible observational skills-- WITHOUT a filter

You’ve had to remind people that an autism meltdown isn't for no reason

You have ever felt like surrendering and returning to battle in the same minute

Your definition of a hero is a KIND and LOVING person who works with autistic people

You must document everything, because you have had to prove everything

You’ve never heard a social service worker say, “No problem, we can offer you that support."

You are more stressed by people who are supposed to help your child, than by raising a child with autism

Your heart melts when your child makes a few seconds of eye contact

You’ve spent years educating people about autism only to have to start all over again when they still don’t get it

Rain Man is one of your favorite movies because Tom Cruise is so good in the role of a frustrated sibling

You wish Gordon Ramsey was in charge of training all autism caregivers

Your child takes the temperature, texture and smell of food personally

You are tired of explaining why your son is not like the Rain Man

You have stacks of individual assessments and plans in the same way others have stacks of magazines

You think special education teachers deserve higher pay

You find yourself mumbling more four letter words

Halloween is a sensory overload nightmare

You have given up on more than one Christmas

There are Easter eggs that have still never been found

You have sped out of a fast food drive-thru line, before getting the food

You've abandoned a full shopping cart 

You still bring snacks, juice boxes, baby wipes, diapers, change of clothes when going out, even though your child is over 18.

You’ve spent thousands on Gluten-Free food, only to discover your child isn’t gluten-sensitive, but you still buy it anyway, because it seems to help digestive issues

You understand the science behind Vitamin B-12 shots

An entire week, month or year, is a blur. 

You've advocated for brand name vs. generic names for epilepsy medications

You don’t have time to worry about what's going on in the Middle East, you’ve got enough of your own battles to fight

You obsess on irrelevant trendy issues, to escape from revolving inside the isolated world of autism

Your child goes through at least 3 pairs of clothes per day, though he's an adult, and he's not in a theater performance

Everyone comments how good looking your autistic child is

You stopped reading books about autism by authors who don’t have autistic children

You can’t predict if it’s going to be a “good day"

You've seen the best and worst of humanity

You've had to say, "Stop hitting yourself," or "Stop biting yourself." 

It's a battle to get in and out of the car, even though your child is old enough to drive

When you're in a long line while your autistic child is vocalizing, people BEG you to go to the front. 

You twitch and prepare to react when you hear any sound that sounds that remind you of a meltdown

You eat dinner at Midnight. 

You've purchased dozens of weighted blankets, chew toys and noise cancelling headphones 

You've spent thousands of dollars on vitamins, herbs, special foods, shampoos, soap, aromatherapy oils and lotions.

Your adult child still watches cartoons. 

Your child has never spoken, but you understand how he/she communicates

You are the primary autism expert and interpreter for your child

You learn a lot about people by watching how they react to your child

You can go from cordial/calm, to crazed/bitch if someone messes with your child

You can't help advocating for others with special needs and vulnerabilities

Your idea of a dream vacation is no seizures or behavioral meltdowns for a week

Your child has taught you the meaning of unconditional love

You know your child is smarter than they appear

You carry around an incredible amount of trepidation 

There's always Cheetos and chicken nuggets in your home 

You buy a new toothbrush every week

You are stronger now than you've ever been

You have an automatic love and respect for others raising children, teens and adults with autism 

Your dogs worship your autistic child because they're always dropping food on the floor

Transitioning in and of a car is like going to the gym for 12 hours

Your child slept 3- hours a night for 7 days in a row. 

Netflix is an intervention 
















































Kim Oakley