Wednesday, February 19, 2014

Answering "The Question"

It's an interesting question when someone asks me, "I don't know much about autism, what is it?" I usually rattle off my normal response, something like, "It's a disorder where the brain doesn't speak in a 'normal' way to the body." Sometimes I'll make it more personal to my son, "Imagine a 3-year-old in a 6-year-old's body." But lately I was asked this same question again, and I realized that there is no "right" answer. Every autism parent you ask is going to have a different response, because autism does not present itself the same way in different children.

So right here, right now, I am going to give you a glimpse into my son's life. His brain, his body, his strengths and weaknesses, his likes and dislikes...

Immediately after his diagnosis, I went into "protective" mode. I shared information only on a need-to-know basis. But I quickly moved out of this phase and started sharing "general" information with the people around me and my son. Now, I give you my son...

The Brain (The Learning Center):
*He has an incredible memory. He remembers everything he hears about animals, especially African and Ocean Animals. He remembers details from trips, parties, toys, etc...from years earlier.
*His comprehensive language is awesome. He understands most everything that we say. He is great with his vocabulary words that come home from school.
*His verbal language struggles a bit, but he is verbal. He gets frustrated sometimes when he can't think of a word or how to ask for something that he wants. Wouldn't we all? He is also in speech therapy at school to help with the sounds of his letters.
*He struggles with reading, but just recently made a break-through! He is finally starting to sound out small (2-3 letter) words! This gives me a lot of hope, because you can see how hard he's trying and how much he wants to be able to read.
*He sometimes "loses" the numbers in his brain. He is getting much better at retaining his skills, but it used to be that he could count to 15 one day, and the next barely make it to 5.
* Not sure if this is the right category for this, but my son also has anxiety. He takes a natural medicine called Rescue Remedy when he is anxious, and it helps him enough to get through a new or scary experience, or any time when he is just nervous about trying something.

The Body:
*He is in occupational therapy at school for his fine motor skills. He has a hard time writing small letters and numbers, and his hand gets tired quickly.
*He may appear a little clumsy, but it is because his leg and core muscles are a little weak. We do a lot for this, especially in the summer, like horse-back riding and swimming. He is also in adaptive P.E. in school.
*He is allergic to dairy (makes his tummy so sick!) and highly sensitive to gluten (affects his behavior). He also gets hyper when he eats anything artificial (especially those nasty colors), so I try to avoid those things.

The Senses:
*He has sensory processing disorder that goes along with his autism.
*Certain lights, those that buzz or are too bright, bother his eyes. He does not like trips to our local public library because of this.
*Loud sounds can make him upset, but he is learning to leave the room or cover his ears.
*He likes to chew on things. Recently he lost his first two baby teeth, and that week he chewed holes in many sweaters and shirts. It was my teenage daughter who finally realized that he was "teething" just like an infant would -- smart girl!
*He likes to spin, jump, flap his hands and arms, and sometimes make loud noises with his voice. There are wonderful books about sensory processing with all of the technical terms for all of this (I recommend one called The Out of Sync Child).

The "Sometimes I Get a Little Stuck" Issue:
*I'm not sure where to list some of the following issues, so I came up with my own title...
*He reacts to things with a lot of Ta-Da!!! If he is happy, he will sometimes laugh uncontrollably (the cutest laugh ever!), and scream in excitement. But sometimes when he is very upset, he will have a tantrum (just like a toddler). And once in a while, it will turn into a meltdown (luckily these have decreased in frequency as he has gotten older.)
*He is curious, and may take things apart, especially toys. I have to make sure that toys are safe (no sharp parts) and can be chewed on. He is still learning how to play with toys appropriately...playsets don't always make sense to him and many times he'd prefer to line the objects up or group them with other "like" items.
*He is still working on potty training. We were told by his psychologist that the average age for a child with autism to be potty trained is 7. He is making good progress in this area.
* Even though he understands what he is being told or asked, he can take a few seconds to process it and give an answer or response (maybe this should be under "The Brain?")
*He doesn't understand the concept of time. Today he was talking about our trip to the beach, which happened months ago, but he was referencing it as happening yesterday. He will sometimes fall asleep for the night way too early (a couple of hours before bedtime...but, trust me, you don't want to try to wake him up!) and he wakes up early. I try to get him to sleep until 6:00 a.m., but he doesn't understand if you tell him at 4 in the morning that it is still nighttime. Sometimes another spray of Melatonin (natural sleep aid) will settle him down for a couple of hours, but, if not, the iPad is a miracle so mommy can get some more rest!
*He doesn't understand safety issues, although it's getting better. I have locks on the front door up high, and a gate on his bedroom door at night so that he can't "escape" and get hurt. He never plays outside alone. And I put him on the bus in the morning and meet him at the curb in the afternoon. He took swimming lessons last summer, but never really "caught on," but he thinks he can swim now...scary!

His Likes:
*Playing with siblings, cousins, and friends.
*Rough-housing, as long as he is in the mood to play.
*Eating (I am blessed in this area since most children with autism are a lot more picky than he is).
*Watching his favorite movies, over and over and over (currently Monsters University and Cloudy With A Chance Of Meatballs 1 & 2)
*Playing on his iPad.
*Going to the Zoo!
*Going to the Aquarium.
*Playing outside, especially water play!
*People who stay calm with him, especially when he is having a rough time.
*Riding the school bus!
*Any toy animal, big or small
*Paper Airplanes
*Toy Cars, especially remote controlled ones.
*Train sets
*Building Toys

Therapies:
*We've tried all kinds! Including the following...(I will not mention the ones he currently receives in school, most which have already been mentioned in this post...)
*Floortime
*Occupational Therapy
*Equine Therapy (Horse)
*Bio-Medical (DAN! Doctor)
*Psychologist
*Psychiatrist
*Currently we only see his psychiatrist (outside of school), and was just cut down to every 3 months since he is making such great progress! Yay!

The Future:
*I'm not sure if he will ever be able to drive a car.
*I'm not sure if he will ever be able to live completely alone.
*I'm not sure if he will go to college, or hold a full-time job.
*I AM sure that he has made incredible progress. He works so hard to accomplish the things that most of us take for granted.
*He will always love his family, because of his sweet innocence. And we will always love him.

I'm sure there is so much more to share, but this seems just right for now. My son loves welcoming people into his world, and showing them life through his eyes.

Links To Cute Cartoons Explaining Autism and Sensory Processing Disorder (SPD):

http://livingwithfasd.files.wordpress.com/2012/07/376426_10150992284126575_1452717755_n1.jpg

http://rockinmomsworld.files.wordpress.com/2013/06/spd.png

http://sunflowercyn.files.wordpress.com/2013/03/20130328-002722.jpg?w=547

http://www.kathiesworld.com/wp-content/uploads/2012/08/new-chart.jpg