Thursday, March 24, 2016

On the First Anniversary of our Autism Diagnosis

To the parents anxiously awaiting that first doctors appointment. Hoping, wishing, and praying that all those "idiosyncrsies" you see in your precious child, are just that, eccentric quirks. You're longing to hear that everything will be fine - that it's all in your head. That you're just being overprotective, over reacting or jumping to conclusions.

I was you 365 days ago. 

One year ago I sat in that sterile, white neurologists office regurgitating information about my son while he threw blocks, cars, and anything else he could get his hands on in the corner of the room.

One year ago I was told that my life was essentially over - while attempting to keep my composure, words I never thought would describe my life as a brand new mother were thrown my way - autism spectrum disorder, lifelong care, endless therapy, and thousands of dollars out of pocket. I sat there, attempting to take it all in - to absorb everything as I listened to a man who had just met my sweet son and I try and tell me that my son may never live alone and I may go broke attempting to care for him.

But today, today I'm drinking a glass of wine (or five) and skipping my evening workout. I'm going to sit in front of my TV and binge watch Chuggington on Netflix while I hold my precious little boy at my side.

Because we've survived.

We've survived one whole year of autism in our life. If you would have asked me a year ago, I'm not sure I ever thought we would make it to the one year mark unscathed.

To you newly diagnosed parents, I know it might seem like theres a dark cloud following you around and although this is new territory you're venturing into, if theres any advice I wish I received at the beginning of our diagnosis, it would be...

Don't google.

Google is NOT your friend. I repeat, Google is NOT your friend! The day my precious baby was diagnosed with autism, I immediately went home, locked myself away in my bedroom and googled. A plethora of information, most scary and worst case scenarios came up in my searches. It was information overload.

It's okay to feel grief.

One of the hardest things about this autism journey is getting past the grief you feel and the expectations you previously held for your child's future. It's perfectly normal to feel a twinge of sadness as you see other children your child's age jumping through hoops in terms of milestones, while your child is seemingly getting left behind. It's okay to cry, it's okay to take time for yourself. It's okay if you don't know what to do yet. It's okay to search for what works best for your family.  It's okay to scream and lock yourself away for a little bit, because sometimes that is the only place where you can find solace, as long as you realize when it's time to brush yourself off, get up and be an advocate for your child.

Not everyone you meet will be kind.

Not everyone you meet will be sympathetic. Not everyone you meet will understand the struggle of raising a limited verbal child. Not everyone will understand how hard it is to go out in public and not have an anxiety attack or cry an ocean of tears, right along with your child when they're arching their back, hitting themselves compulsively in the face, and throwing everything off the grocery store shelves. When they struggle, you struggle. When they hurt, you hurt. When they feel overwhelmed with the world, you can't help but feel the same. You wish more than anything that the world would just understand your child. The stares. The whispers. The unkind words. The looks of disgust. Try not to let them hurt you too much, although easier said than done. Not everyone knows, understands, or cares about your battle. Allow those unkind and challenging instances to give autism a voice and to educate those around you.

Everyone will all of a sudden become "autism experts."

Many times when people think of autism, they immediately think of Rainman. Remember, every child with autism is unique. Post diagnosis, the floodgates of advice will open. Most mean well, but some don't. You will be told that your child "looks normal", you'll be asked "if you're sure." You will most likely get the spiel that vaccinating your child caused it - or that if you would just give them this or that, your child will be cured. Your child will be compared to your uncles, brothers, sisters, cousins, friend with autism. Your journey may be vastly different from those around you. What worked for one person, may not work for someone else. Oh yeah, and Jenny McCarthy is not God.

Find your tribe.

You can't do this journey alone. It's just not possible. When the world feels like it's spinning and you aren't able to stand still, your tribe will be there to keep you grounded. They will understand the struggles, the meltdowns, the anger and grief, the feeling of being alone. Find them. Love them. Cry with them. Thank them for being so freaking awesome in your life. Seek out any and every avenue to meet others faced with the same journey.

Don't discount those little milestones.

For us special needs parents, it's the little milestones that many neurotypical parents take for granted that mean the most to us. I remember the joy I felt the first time my son looked at me when I called his name. Or the time he used sign language correctly, after 8 months of practice, to communicate his need of wanting more juice. I think we both jumped up and down like crazy people the day he pointed to the fridge and attempted to say the word "apple" - meaning he wanted applesauce. You will never take those seemingly small moments for granted - and you will feel on top of the world, each and every time they occur. So many times your child will surprise you and exceed and surpass your expectations.

I know it might seem as though you have a huge mountain to climb - and you're afraid because you can't see what's on the other side, but I'm here to tell you that things WILL be okay. I was YOU one short year ago. I remember being devastated and terrified of this new life I was forced to live.

I won't tell you that it's been easy - there have been more days than I care to admit that I would want nothing more than to crawl into a hole and hide away from the world. There are more days than I care to admit that I wish and pray autism away. There are more days than I care to admit the defeat I feel for my child when I see how long it takes him to master a skill. There are more days than I care to admit where I feel sadness thinking of the struggles my child will face later in life. There are more days than I care to admit where I wish I could understand that little boy's world. There are more days than I care to admit where I wish self-injurious behaviors, anger, anxiety, and aggression didn't rule our life every second of every day.

Raising a child with special needs can be a tough pill to swallow. It alters your perspective on parenting and transforms you as a mother, whether you want it to or not. The days seemingly become longer and longer, and patience starts to run thinner and thinner. One year ago my world came crashing down around my feet.

But, over the past 12 months, we have been able to pick up those broken and shattered pieces of our life. We have been able to find some amazing therapy and a place that feels like home. A place that has allowed my child to thrive and progress, more than we ever imagined possible. We have pulled strength, courage, and determination from places we never knew or even realized exisisted, ESPECIALLY on those days where the weight of the world seems and feels like a never ending struggle. We have immersed ourselves in autism groups and become advocates for a child that doesn't yet have a voice. But, don't let that fool you, because even without words, this little boy is sharing his love of life with the world.

I feel hopeful and confident about our future. We have prevailed. We have overcome an abundant amount of roadblocks, many that I never imagined we would be able to maneuver through. I may not have all the answers yet and there may be more twists and turns on this adventure than I would like, but I realize our life isn't over and that autism doesn't mean a death sentence. That this is just the beginning of our new and beautiful life.

Saturday, March 12, 2016

The Long Road to an Autism Diagnosis

I had the perfect pregnancy with Colton. I couldn't imagine our life would be any less perfect after his arrival. I envisioned him being the perfect baby, I envisioned being able to go shopping and the people around me complimenting me on how awesome & well behaved my child was, I envisioned sleeping 12+ hours a night, I envisioned my parents doting after him... and then I envisioned our future - play dates, vacations, swimming, tee-ball, cookouts, road trips to visit family. All the "normal" things you do with your amazingly well-behaved children.

And then Colton arrived.

And the life I envisioned for us was nothing like reality.

And already my dreams were dashed when at 2 1/2 weeks old, we had to rush home to Indiana to say goodbye to my mom. A HUGE piece of my heart broke the day she died. Without her guidance, I wasn't sure I knew how to be a good mother.

My dreams continued to be dashed - at a month old I boarded a plane for Mexico without my infant by my side for my brothers wedding. At 2 months old, we flew, yet again, to Minnesota when my grandma passed away.

Life was a whirlwind and it wasn't until I headed back to work when Colton was 3 months old that we were finally in one place for more than a week.

And thank God for going back to work. I'm not proud of it - but I was a STRUGGLING mother for the first year of Colton's life. I was attempting to juggle the grief I felt after my mom's death, juggle working full time, and juggle playing mommy to the world's most UNHAPPY baby.

Anyone who knows me knows that the infant stage was FAR from my favorite.

Colton cried ALL. DAY. LONG. And when I say cried all day long, I mean CRIED. ALL. DAY. LONG. What I thought was colic turned into what I then thought was "high needs" when at 6... 7... 8 months old, he still cried day in day out.

At 8 months old, I spent the summer in Indiana with my dad.

That's also the first time I told Vince that I thought Colton had autism.

8 months old.

Now looking back at our journey, so many signs pointed to Colton's diagnosis in that early year of life.

-Crying for 10+ hours a day
-Food allergies
-GI problems
-Developmentally delayed
-Sensory issues

Colton was delayed in every aspect of development. He was slow to sit up. He was slow to grab toys. He was slow to roll over.

When I got back from Indiana, I brought my concerns to everyone I knew. And I was laughed at and told the cliche statements

"every child develops differently"
"give him time, he will catch up"
"he's too young, don't worry about anything until after a year old"

The problem was, he never did "catch up" and at a year old, he still wasn't talking, he wasn't walking, he wasn't pointing, he wasn't playing with toys, he wasn't pretend playing. He had suddenly regressed in the few words he knew. He hated to be touched, held, cuddled. He wasn't doing any of the things "regular" toddlers his age were doing. I knew he was different.

And that scared the shit out of me.

Someone finally took my concerns seriously when at 14 months old. Early Intervention (ECI through the state of Texas) finally came and evaluated him and at the end of our session after he had already qualified for PT and OT, the evaluator asked me if I ever thought Colton might have autism.

It was like being hit by a ton of bricks. 

That was the first time anyone ELSE noticed the things I noticed. And that devastated me. Despite "knowing" Colton was different, I still hoped, prayed that it was all in my head. That I was just being nitpicky. That he really was just young, that I was being overly protective.

We were then fast tracked (to the worlds BEST) Pediatric Neurologist at Texas Children's Hospital in downtown Houston.

And at 16.5 months old Colton was OFFICIALLY diagnosed with Autism and a rare chromosome disorder (1q21 Microdeletion).

It wasn't until December of this year, 8 months after our intital diagnosis that Colton was then evaluated a second time (by the world's BEST) Pediatric Neurologist who actually took the time to get to know Colton, to administer the CORRECT testing that our first neurologist failed to administer (M-CHAT, ADOS, ADI-R), and then REALLY explain to us his findings.

In December 2015, Colton was officially diagnosed as having severe autism. 

Then began our road to ABA therapy...

Thursday, March 10, 2016

Progress over Perfection

I can't say enough amazing things about Colton's ABA center, The Learning Lane! He literally has the best therapists EVVVVA! I cried happy tears when I received this video from them this afternoon [I tend to cry a lot when it comes to seeing this little boys progress!]

ABA has been so wonderful and amazing with teaching Colton life skills. Skills that usually come easy to most neurotypical children, but that children with autism typically struggle with. Today he officially perfected WASHING AND DRYING HIS HANDS!!!

Some days I get so so tired of autism in our life. Tired of rearranging schedules, missing work, chauffeuring Colton around to appointment after appointment, therapist after therapist, specialist after specialist. I get tired of dealing with the meltdowns, the communication barrier, and the self stimulatory and self injurious behaviors.

I won't say that the days are easy, because there are more days than I care to admit where I wish I could give up, crawl into a hole, and hide away from the world. But then I think of all the progress Colton has made, especially in the past 2 months and how blessed I feel to be on this journey alongside him. To see him thrive in an environment so perfect for him is so rewarding. Pre diagnosis, autism was strictly a word that held little to no meaning for my family and I. But I feel thankful that I'm able to help spread awareness to the 1 in 68 children affected with autism!

Learning to wash & dry his hands!!!!!

Working on his imitation and matching goals!!!