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

New Journey

I had a surreal experience the other day. Let me back up and tell you that my son is in public school for the first time ever this year. We finally decided on trying out an autism classroom with him and, so far, it is turning out to be a positive experience. But, back to my original thought, the other day was back-to-school night. I showed up at the school just like all of the other parents. I passed the PTA table, and the spirit wear table where they were selling t-shirts and other items, all in the school colors. I sat in the large auditorium and looked around at the many parents, students, and teachers who were there. My son was at home with his big brother. I sat and listened to the principal give her speech about curriculum, grading, spirit week, etc... I listened to the PTA president talk about new programs that they are supporting in the classrooms this year. I watched and clapped as they introduced each teacher and what grade they would be teaching. My son's classroom had 3 women introduced, 1 teacher and 2 aides. There are only 7 children in his class. I was there, I participated, but, unlike most of the other parents, I went to the special needs classroom at the end of our group time in the auditorium. As I walked through the bustling, loud hallways, I felt like I was in a bit of a daze. My son is so little, so vulnerable, so dependent on others still. And then I walked into the quiet of his classroom and I was greeted by 3 wonderful women with warm smiles at the door who all knew my first name. And, unlike what I pictured was happening in the other classrooms that evening, it was like life slowed down in that instant. As other parents, and some of the children who are my son's classmates, joined us, our conversation turned toward making friends, eating habits, IEP's, and even poop. Yep, that is what you will hear in an autism classroom. Talk about diapers, potty time, and schedules. Talk about food allergies. Talk about routine. Talk about therapies. And in that moment I realized that this is where I was comfortable. This is what I knew. This is what so many years of parenting this special little boy has taught me. That I was meant to be his mommy. And he was meant to be my son. And we will go on this journey together this year.

Do I run? No, not me. I pick up toys...

My son insisted that every toy be removed from his room tonight before he would go to sleep. I could see it was actually going to build into an anxiety attack before I agreed to move everything into his brother's room. Well, at least I get my exercise!

Mmm...Breakfast Anyone?

My son's breakfast of choice this morning: apricot (pronounced "paper cut") soy yogurt, kalamata olives, and tortilla chips. An interesting combination, but I guess it could be worse. :P

Why Lighting It Up Blue Is Important To Me

April 2nd is World Autism Awareness Day, which kicks off Autism Awareness Month through April. Autism Speaks encourages people each year to "Light It Up Blue" by replacing your regular lightbulb on your porch with a blue one for one day (April 2nd). You might be asking yourself, how can lighting up my house with a blue lightbulb help in the fight against autism? To me, it's more about awareness and understanding of this mysterious disorder. What would happen if everyone took a day to become more aware of autism? There might be fewer people staring and making rude comments to parents fighting to keep their autistic child calm at the grocery store and other public places, there might be more bills passed to assure that insurance will cover treatments for these beautiful children, there might be more parents who would recognize the warning signs in their own children and get early intervention treatment so that their child might live the best, fullest life possible. What is my hope? That each of my friends and family would take a moment to learn more about autism. There are many websites that offer wonderful insight...a couple of my favorites are autismspeaks.org and reallookautism.com. And then head to Home Depot this week and buy a blue lightbulb to light up your porch on April 2nd. Tell your neighbors why you are doing this and encourage them to learn more about autism. You will not be alone; many prominent buildings and landmarks will also be lighting it up blue, including the Empire State Building, Niagara Falls, the Sydney Opera House, the CN Tower, the Cairo Tower, and Rockefeller Center. Will you pledge with me to open your eyes to this epidemic that now affects an estimated 1 in 110 children, including 1 in 70 boys? (And many believe that these are very conservative estimates.) Thank you, from me, my son, and my entire family!

Welcome To My New Reality (Or, Still Open For Business During Construction)

I know, I know...us autism mommies are supposed to have super powers, able to handle it all with a smile. I have to admit, my patience has grown by leaps and bounds in the last 3 years, even though sometimes it may not show (probably especially to my older kids), but I can feel it. There are days when I can read other autism blogs and feel proud to be in the company of such awesome people. Others who are proud because their child is potty trained, finally at age 10. Some are sharing the fact that their child slept through the night, or tried a new food, or didn't spit on anyone that day...and, trust me, they have a right to shout it from the rooftops! Those are big deals! All of them! And I blog about those things too. It's what keeps us from going insane and lets us remember the huge progress that our children have made from the time of diagnosis. But then there are the days when, yep, reality sets in. It's not invited, it just kind of creeps in and plops down on the couch by you. And then the train of thoughts starts running through your mind. The realization that you have a child that will be dependent on you, forever. Forever is a long time. Days are changed, routines are changed, friends are changed, vacations are changed, "downtime" is changed, reality, as we knew it, is changed. And it is not necessarily always a bad thing, but change can be scary. And when you have a stubborn personality like I do, well, change can be a hard thing to swallow. But I work on my flexibility every day, my spontaneity, and my "super powers." All because I love my son and he loves me. How do I know he loves me? Well, today I had allowed my eyes to close while he was playing near me on his iPad, and soon I felt a warm kiss on my forehead. Yep, it's all worth it. Even if my idea of reality is changing.

Thank You...For All Those Who Don't Run Away

I have never announced my blog publicly. I've been writing about our life with autism since 2010, and something still keeps me from "putting it out there." This post may change things...(we'll see how brave I am...)... We had friends over to our house last night that we have not seen in 8 years! 8 YEARS! With moving from here to there, we just haven't lived close enough to easily catch up before now. Okay, why am I telling you this? Because it was their first chance to meet our little boys. One "typical", the other autistic...both perfect in their own way. After they left, I found myself feeling very grateful and wanted to tell them Thank You, very loudly! You see, they didn't get scared off when my son (who will be 5 in the summer) suddenly needed a diaper change in the middle of our conversation. They didn't look at me in a judgmental way when he started screaming because of the new noise in the house. They didn't even shun him when he started spinning and didn't want to stop. And best of all...they asked questions! Yes, they wanted insight into our life with autism. They asked beautiful, thoughtful questions about why he doesn't feel pain, how he learned to be affectionate, what his language skills are, and how the siblings are involved. So thank you to this wonderful family (they know who they are), and all people like them who open their hearts a little more (and don't run away!)