I’ve toiled over ideas for this post almost since I began writing the first. I mean, the first one is easy. Who are you and what are you doing? Done! Even the second one wasn’t difficult.
What’s up with the name? Check! This third one is much more daunting, though. Which topic that’s captured my heart will be the first to come to the page? Family? Food (Yeah, I’m a sucker for good food.)? Special needs? Chronic health issues? Chicken keeping? Autism? Service animal (That’s right! ANIMALS, not just dogs. I bet there are some things you didn’t know!)? Homeschooling? Day to day life? To be honest, I’ve dwelt on this longer than I’d care to admit….even to myself. I finally settled on not one, not two, not three, but, four topics that I felt I could safely bundle into one short series….so, buckle up! You’re in for a ride.
-Autism
-Service Animals
Now, let's get started with Autism. I'll warn you in advance that this will likely be one of the longer posts I'll ever do and it will still barely be a drop in the bucket on the topic of the Autism Spectrum. Its' a big subject!
According to WebMD, the definition for Autism is “a complex neurobehavioral condition that includes impairments in social interaction and developmental language and communication skills combined with rigid, repetitive behaviors.” That’s easy….simple, almost. It makes it sound almost like a child will outgrow Autism. Thankfully, we live in a world today where, though it is still highly misunderstood, misdiagnosed, and mistreated, Autism is, believe it or not, becoming much more normalized. Today’s physicians and society are coming to realize that Autism is a spectrum of severity, not a straight line. You could know a dozen people with Autism and have none of them present the same way. Today, we have IFSPs, IEPs, counselors, therapists of all kinds, and so many more resources than were had even five or ten years ago. In the slightly more distant past, Autism was often mistaken for “that kid just needs a whoopin’!” Even today, many people are quick to judge a child “pitchin’ a fit” in the grocery store when, sometimes, that is not the case. A child having an Autistic meltdown may look and seem to act the same way as a child throwing a massive fit for not getting their way or trying to run away to be naughty, but, the truth is far from that.
Imagine for a moment, if you will, walking into an unfamiliar place. The lights strobe and make you squint. The smells attack you so strongly that it is like walking through a perfume department and having every salesperson assault your nostrils at once with their own preferred fragrance. The sounds that are barely out of the ordinary for most are like the roaring of a jet plane instead of a mall’s central air system combined with the tinkling of symbols instead of keys and jewelry and the sounding of trumpets instead of the beeping of cash registers and an onslaught of every radio station at once instead of each individual store’s quiet Muzak. That is what it is like to walk into a mall or school or church or even a home for someone with Autism. It sounds horrifyingly similar to torture methods that might be used by rogue covert operatives, doesn’t it? Now, imagine, if you would, experiencing that not just while you’re in that unfamiliar place, but, in nearly EVERY place that most would frequent without a second thought. Do you think you’d get a little overwhelmed, too? Do you think your senses being assaulted and overloaded like that might cause a meltdown, especially in a child who has no control over where they go or how long they stay there, or, who may have exacerbating conditions that hinder impulse control? Welcome to Autism. Oh! One more thing. It doesn’t go away.
People with Autism, which often referred to as Autism Spectrum Disorder or ASD, are typically divided into two “types,” if you will. There are Sensory Seekers and Sensory Avoiders. Each is exactly as it sounds, BUT, the two are not mutually exclusive and those two traits are quite often present in the same individual. Those with ASD, who may have
formerly been called “Aspies” (short for Asperger’s, another “old school” name for ASD), find or create their own ways of coping with daily life. Noise canceling headphones are life savers, and I really do not mean that metaphorically. They can save one’s sanity and hinder self-injurious behavior. Essential oil jewelry can help someone control the scents they’re smelling as they change environments. Tagless clothing and softer fabrics help with keeping clothing on, versus on the floor. Sensory rooms are popping up in schools across the country and around the world to help those with ASD get sensory input. Those leashes many moms catch flack for using? Odds are that mom isn’t lazy. She is using a lifesaving devices that can keep a child with ASD from eloping and running into danger and, boy, are they good at getting away! Remember that the next time you want to berate a parent for “losing” their kid when you hear a search party is being formed. It may not be that the parent wasn’t watching the child. It’s probably that the parent took 30 seconds to heat up a meal or go to the bathroom and the child unlocked the multiple safety precautions to sneak out and find something or somewhere they love. Often, with Autism, that beloved place or thing is near a body of water, which has lead to many heartbreaking losses and the last thing a grieving family needs is judgment.
To better explain how a person with ASD may go about their day in the sensory-charged world we live in, let me describe a typical day for a little one I love.
4:30-5am Wake up before the rest of the household and go to their chosen “safe place” for sensory input and stimulation—the rocker, which has to have cushions and padding to avoid injuring this little one, because of the force they thrown themselves back to rock with. They’ll stay there for a good half an hour to two hours, depending on how they’re feeling that day. Often, they will not speak or even acknowledge that anyone else is up during this time. This is what we often refer to as their “prep time” or “coffee hour,” since it sort of mimics how some adults are before they have their coffee—“Don’t talk to me. Don’t look at me. Don’t touch me. Don’t breathe on me.” Sound familiar, coffee-aholics? Mom or Dad checks in, but, typically heads back to bed to rest for a little longer.
6:30am Snack/pre-breakfast This is usually a banana, string cheese, and/or dry cereal. There are approved snacks the kids are allowed to get into and this kid has this routine down, after all, routines are music to the autistic person’s ears.
7am More sensory input, typically in the form of rocking and an educational children’s show with lots of repetition and it is almost always a show they’ve already watched about a million times oooor ransacking the spice cabinet, if it’s a day with an especially high need for sensory input.
7:30am Chat with Dad….or silently stare at family members while Dad gets ready for work.
8am Dad leaves for work. This may start the first big meltdown of the day (there are often smaller ones if the perceived set order of above events is disrupted), if the preplanned order of events in their head does not match up with the actual schedule for the day, or, they may appear completely oblivious to the fact that Dad just left for work. There is no in between.
8:15am Breakfast, clean up, and get dressed
9am Homeschool starts for the day
10-10:30am Finish homeschool (This child is in K4 and, as such, doesn’t have a long school day….yet.) and play outside, weather permitting, or in the play room while the older sibling continues working and Mom makes lunch.
10:45am Lunch Yes, this is early, but, the kids are early risers and routine is essential.
11:15am Nap time More than needing a nap, this child craves and enjoys the quiet time in a quiet place like their bed with younger sibling asleep. They will often do quiet sensory input or stimming (physical sensory stimulation or input that is often a repetitive behavior such as hand flapping, rocking, jumping, stomping, singing, humming, etc.) in bed.
1-1:30pm Rise and repeat a shorter version of the wakeup routine from this morning.
2pm Snack
2:30pm Play outside or downstairs. This often means that they will play near, but, not with siblings. They do LOVE playing with the family’s off duty service dogs in training, who are very patient, loving, and helpful.
4pm Come inside for a video lesson in ASL. Mom and Dad are hoping having this skill will help with communication during nonverbal periods, like meltdowns, “prep time,” shy times, etc.
5-5:30pm Dinner
6-7pm Play (rock) with Dad or downstairs.
8:30pm Bedtime Again, this is a bit early for this child, but, by this time of day, siblings are going to sleep and they are completely done with all the sensory input and are ready for some quiet….or jumping on the bed with siblings, much to Mom’s chagrin.
10-10:30pm Actually go to sleep. By now, they’re calmed down enough from the day to get some rest and start it all again in a few hours. You will probably notice that there is not a large amount of sleep time for this child. Many children with Autism have trouble sleeping. One of the earlier traits that was especially noticeable in this child was waking up at 2am to find them running around the house as though they’d just slept a full 10-12 hours or refusing to sleep when other children their age would be exhausted.
If there is an outing or other scheduled event, that changes. Speech therapy, occupational therapy, physical therapy, equine therapy, and many others are very helpful for those with Autism. Even though schedules may vary for each day of the week, you’d be surprised to see how quickly this kid’s little mind picks up the routine. Monday Speech Therapy? They know that homeschooling will take place after naps instead of in the morning. Church on Sunday? They know the routine and schedule, even without being able to read a clock.
When Mom has nursery duty and cannot bring a SD or SDIT (Service Dog or Service Dog in Training) along to help, they’re likely to have a harder time adjusting. Going to a church with a special needs room with lots of sensory toys is an amazing help. Not all churches have
them. Not all churches are open to service animals. Our small town church is and it makes
me wonder how those in less accommodating churches make it with special needs kids. If your church doesn’t have a special needs room, program, class, etc., I’d encourage you to ask your pastor or children’s ministry coordinator about it, if you need one. Chances are, they don’t know it’s needed or they don’t know where to start. Help them! Lend ideas for what would or would not be helpful for your special needs child’s time there. Don’t have a special needs child? Volunteer to help someone who does! Many parents of special needs children aren’t just tired, they’re exhausted and I don’t mean the kind of tired a nap or good night’s sleep will fix. I mean that, to their very core, every part of them has been overextended on a daily basis for years on end and they are EXHAUSTED. Going to church or social events seems daunting and like it just isn’t worth the effort and exhaustion when they already know there’s a VERY high chance of it ending in a meltdown. Many people with Autism don’t like handshakes or hugs. This can be awkward and difficult for parents who are trying to encourage their child to greet others and help others understand that their child is not being disrespectful, but, rather, would find very real physical pain or discomfort from that hug. Offer a high five or a fist bump. They may not talk to you, they may not even make eye contact (this is one of the more classic signs of ASD), but, I promise you they will remember that effort. Our special little person randomly asked me about a person in our church by name after we’d only been there a short time. They’d never spoken to that person. They’d never looked at that person. They did remember when that person offered a (declined) high five each time they would pass by. That person is now our child’s favorite person at church.
I know that I could go on and on about Autism for hours, but, I’ve already gone on longer than planned. In closing, if you’re not sure if some kid in a store is pitchin’ a fit or having an Autistic meltdown, remember this: It. Doesn’t. Matter. It doesn’t matter. That mom or dad or caretaker is likely overwhelmed and trying to keep it together and keep nosey eyes off the child who is having a hard time. Don’t stare. If you do catch their eye, don’t give that condescending, judgmental look we are all way too good at. Smile. Nod or tilt your head sympathetically and let them know you understand. Even if you’ve never been in their shoes, you know that you’d be just as frazzled as they are. DON’T try to correct their parenting or their child. Ever. EVER. Let them parent. You know that saying, “Be nice to everybody, ‘cuz, everybody is having a hard day?” Well, it’s true, so, be kind. Don’t do something you wouldn’t want done to you (and, let’s be honest; you would not want a complete stranger sticking their nose into your family’s business, giving advice on something when they have no clue what they’re looking at or talking about.). Every single person you meet is fighting a battle you know nothing about, especially that mom or dad or caretaker or child who is having a hard time in the grocery store. In short, if you are adding yourself to the situation in any way, be an ASSET to the parent/caretaker, not an….well….you know.
Happy Wednesday, y’all! Now, go fight your battle!
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