Every Mother's Hope

In honor of today being April 2nd, World Autism Day, I thought I would hop on here and tell you a cool story. My story is very raw and real. I apologize for none of it. I have met too many mom's going through this for the first time in the last month and need a little light. This is for you, Linda and Libby.

You are NOT alone! We are with you! I hope my message in the end is one of hope and endurance. Keep going; keep fighting. I promise you, it is worth the tired.

Here is our story:

What Does that Mean?

It has been 3.5 years since we first got my son's diagnosis of Autism Spectrum Disorder. He was only 3 at the time and was still not talking to us. He could repeat anything you told him to (echolalia), but struggled to put two words together of his own. I took him to his pediatrician for a referral to a speech therapist to help AJ start building sentences. I explained to our peds doctor that AJ had a large vocabulary and said far more than the 200-word threshold for his age; I just couldn't have a conversation with him. She whipped up the referral and sent us on our way. We were none the wiser. 

I still remember sitting in the speech therapist's office when she calmly sat me down after only 5 minutes of assessing my son's "speech impediment". She said, "Mom, we need to talk. Have you ever heard of ASD and ABA therapy?" (Words that would become as common as pancake or sidewalk in our home) I smiled back and said, "Nope, never heard of it."

The next 10 minutes of her talking to me would be more of a blur than anything else. The room seemed to be spinning and our therapist's articulate explanation would turn to a hum that sounded more like Charlie Brown's English teacher than a person talking before me. 

She would go on to discuss treatment options, pre-school enrollment, other therapies, psychologists, referrals, and more...I felt the light in my life slowly extinguish. The future for me looked very dark and incredibly lonely.

I looked over my shoulder and my son was silently playing with some blocks over in the corner like he had every day before today...

The Worry

As much as you hate predetermining your child's future, you can't help yourself. Thoughts of the years ahead slowly start to creep in until they have flooded your mind with worry. Thoughts about playground bullies, potty training, prom dates, marriage, college, scholastics, sports, independent living, and every other thing that you thought was inevitable now seemed completely out of reach now that "you know". 

Such woes can put any mother over the edge and mine nearly did. I slowly started to sink into a dark abyss of defeat. I began to accept that my son would never have any friends; he would never know the excitement of going on his first date or a first kiss. He may not even be able to go to a regular mainstream public school.

As AJ got older, his symptoms became more pronounced. Autism is so much more than a struggle to communicate. There is the sensory side of it. Sensory irregularities bring complications with bathing, staying dressed, potty training, outings, play dates, birthday parties, eating dinner (forget eating out), and an array of other possible difficulties, too. Life with AJ started to look more and more burdensome.

As he got older, my life got harder. There were days I caught myself momentarily wishing I never had AJ. Feeling this way, even for only a second, then sent me into a whirlwind of guilt and unstoppable anguish. How could any mother wish her son away? I remember accusing myself thinking what kind of a monster are you?

I made the mistake of setting my expectations of AJ's life way below the mark. It was as if I had seen the worst-case scenario for his existence in a crystal ball and then decided that was his fate. It was only a matter of time before my emotions overcame me, and I knew if I was going to be the warrior mom my son needed me to be, I was going to have to get ahead of this.

So I got help...

Rewire the Brain

I went to an appointment with 'mental health' on the military installation we were assigned to and spent the next half hour explaining my difficulties watching my son grow up with this debilitating condition. I told him of the torture I experience watching him play all by himself on the playground while other children ran past him obviously absorbed into some kind of make-believe world. They were laughing and having fun amongst themselves while my son mimicked and scripted the latest movie he was keen on at the moment off on the sidelines. I explained how my heart ached at the thought that AJ didn't have any friends and how unfulfilling his life was at only the age of 4.

He sat there and listened for the first 20 minutes, like any good therapist does, and then he simply asked me some questions that would change my whole perspective. He asked me first and foremost, "Is AJ happy?" I replied, "In all honesty, I think he is the happiest person I have ever known." He responded simply with, "Then why do you feel the need to push all these disappointments on him? Are you sad because he doesn't have the things that you value in life, the things that make you happy? If he is happy without them, then why not just let him be happy?" 

He also told me it wasn't fair for me to decide all of AJ's life events for him before even entering Kindergarten. He frankly told me I couldn't predict the future and that if I raised AJ telling him he couldn't have all of these things, then AJ would grow up believing just that. 

In retrospect, I can see how ridiculous and obvious his counsel was, but at the time it was the revelation I needed to retrain my way of thinking. Now anytime I go off on a tangent thinking about future events (usually after a small setback), I remind myself, Kristi, you don't know that to be true. You can't predict the future. It's called challenging your own thoughts. 

When we went back to our diagnostician, a developmental pediatrician, there were a few books on display in her office for suggested reading material for parents. One in particular caught my eye. It was called Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm. I can't stress the magnitude in which this book has transformed my life. To this day I recommend it to anyone and everyone, parent of a child on the spectrum or not. 

There were three major points this book poignantly made to me:

1. This isn't happening to you! This is happening to your child. This is their journey and you are simply along for the ride. Truer and harsher words have never been spoken to me, but it was the necessary introspection I needed to wake myself up from my own self-pity. I had been grieving the loss of the life I thought I was going to have and all my focus had been directed at what this diagnosis would mean for me. 

It was time for me to stop living in my self-loathing state so I could see if AJ was alright. After all, he was the one existing in a hostile environment, not me! Off the pity pot!

2. There are two types of parents: 

            a. The parent that spins their wheels playing the victim. They want someone to blame. They want something to hate for what life has given them. They will spend all their time and energy searching for causation while their child grows up without them noticing all the wonderful things that they have accomplished. 

            b. The parent that accepts that their normal is different than everyone else's normal. They recognize and acknowledge their child has autism and then they look for ways to access all that life has to offer them. They celebrate the little victories and then set their eyes on the next milestone. 

I decided from the moment I read that text, that I would be parent (b), and I never looked back. 

3. Cherish who they are, not what they aren't. This helped me identify all of AJ's strengths rather than focusing on his weaknesses. Instead of spotlighting that AJ wasn't much of an athlete, he wasn't potty-trained at 4, or that he didn't wear clothes a majority of the time...I chose to relish in the fact that AJ loved his baby sister fiercely, and that he was incapable of lying because he worked too hard to articulate the truth. I opted to recognize his hard work ethic and his love of learning. 

These three things would set us up for years of success...

The Next Three Years...the Reality

AJ was enrolled in pre-school within a month of our first initial visit to the speech therapist. After a solid diagnosis was made, then came all the other referrals to additional therapies and regular visits to a developmental psychologist. 

AJ began an exhausting regimen of occupational therapy twice a week for an hour, food therapy once a week for an hour, bi-monthly visits to the psychologist, speech therapy twice a week for half an hour, physical therapy once a week, and eight hours of in-home applied behavioral analysis (ABA therapy). Keep in mind this is in addition to his 12 hours of pre-school already on the books. This kid had a SCHEDULE!

Many weeks I felt like I was living inside my van with my young son and brand new daughter, Paisley. It wasn't until a routine visit to the psychologist, that I would find a balance to life again. My doctor took down notes of all our appointments and looked at me completely exasperated. He asked me, "When are you just spending time as a family? Your kids are growing up in a doctor's office." I explained my logic in acquiring all the services I possibly could to obtain the best possible outcome. 

While he applauded my efforts and reaffirmed that all my work would certainly pay off, he also exclaimed that AJ was no more special than anyone else in our household, not me, not my husband, not the baby. I can't describe the gouge to my heart that sharp comment made, but as soon as I let it simmer, I thought he's right. AJ, although special, was no more special than anyone else in our home and I needed to stop living like he was. 

He told me this life was a marathon, not a sprint. He encouraged me to find a routine that was maintainable. He said, "You will burn out if you keep this up," and to be fair, I already was. That day I walked out and I cancelled OT, PT, and the food therapy group. I also cut back speech to once a week. 

The next three years would be the hardest working and the most rewarding years of my life. 

Fast Forward

We are now living abroad in Europe. AJ is still receiving speech services in the school and has a full-time para that works alongside him in his classroom. He is reading and writing at the same level as most of his peers and thoroughly enjoys school. He particularly loves math, science, and especially music and p.e. Right now he is learning martial arts and fully digs it! 

He is still receiving in-home ABA therapy, but has transitioned his care to a parent-based model, which means that I am now AJ's therapist. I receive 2 hours of training a week and then provide all of AJ's behavioral management throughout the week. This is the ideal transition from the get go, that one day all responsibilities and care will ultimately be handed over to the parents. 

AJ is making daily progress in his communication and has become very inquisitive. He wants to know the "where, what, who, how, and why" of every event he encounters. I welcome every bit of it. I spent too many years in the dark not knowing what he was thinking. 

I imagine all these years he has been absorbing words and phrases and is just now putting it all together. It's as if he had the "what to say" all along, just not the "how". We are seeing more functional language and communication everyday. AJ talking has become our new norm. I sometimes have to catch myself and think, Wow! Did he just say that? I can't believe how far we've come! 

The biggest triumph I wish to convey is that AJ has friends! Real friends! He has a buddy in his class named Danny. For whatever reason, AJ has decided his name should be Simon, so AJ calls him Simon. The rest of the class thinks this is so comical, including Danny, but he is cool with it. He told the teacher, "It's ok. If AJ wants to call me Simon, then I will be Simon to AJ." Danny, I mean Simon, also knows that when it's time to pair up for an assignment, that AJ will come looking for him so he no longer looks to find someone else. He simply waits for AJ to seek him out. 

The other precious event that happened just this week was the simple act of love and adoration from another little girl in AJ's class. Her name is Lucy. Lucy has an uncle with autism. Lucy recognized AJ's condition shortly after he joined the class. She immediately took AJ under her wing and is always looking for ways to support him. 

This week's homework assignment was to write a poem. Lucy wrote her poem about AJ. 

It reads:

AJ's trousers are gray.

AJ's as handsome as the King.

AJ's as smart as a teacher and AJ's smile is so pretty.

AJ's t-shirt is as white as a marshmallow.

AJ's skin is peach.

AJ's eye color is blue.

AJ's different to everyone in the class, but he is still my friend.

When AJ's sad, I cheer him up, and AJ tells his mum I am kind.

Hope

This small act will indefinitely supply me with hope for the future. Lucy's kindness promises me that others will see past AJ's quirkiness and notice what his uniqueness brings to their lives. She resupplied me with faith in humanity. As his mom, of course I see all that is wonderful about AJ. Lucy taught me that others do, too. 

My message to all of you experiencing this for the first time, or maybe you're a year in, or ten years into your journey. Remember to never lose hope. Celebrate the small victories and propel yourself into the next. 

This is a hard life, but it's also a good one. Enjoy it!

Happy World Autism Day! 

Light it up Blue,

~K