Saturday, March 24, 2018

In the three years post autism diagnosis

Three years.

Three years since we sat in that sterile white neurologists office with our shrieking toddler in the corner of the room throwing anything he could get his hands on all the while banging his head on the floor and wall.

Three years since I attempted to keep a calm demeanor, even while hot tears streamed down my face and that same cold neurologist told us, matter of factly and without any type of emotion, that our sweet and precious 16.5 month little boy had moderate to severe autism. 

Three years ago, we thought that our life was falling apart right at our feet.

As we walked out of that office into the warm and radiant March sunshine, the happiness and liveliness of our life suddenly turned dreary and dark and as parents, we were filled with despair and sadness. Our life was now separated in two - the "before" autism diagnosis and the "after" autism diagnosis.

Three years of attempting to maneuver through this new life that is autism. Three years of intensive and full time ABA therapy. Three years of devoting ourselves and our lives to making sure that our son had the best intervention and chance at life possible. Three years of extraordinary ups and dreadfull downs and all of life's little in betweens. 

If you would have asked me in those early days and months post diagnosis if we would have had made it to this point in our journey three years later (completely unscathed) I would have laughed uncomfortably, poured myself a large glass of wine, and cried alone in my dark bedroom, the only place I was able to find even a little bit of solace at times.

But, here we are.

Three years of realizing that our life wasn't actually over, that it was just beginning, in a new and different way. 

My heart breaks and I'm honestly embarrassed and sad when I think of how hopeless and bleak I felt about our life post autism diagnosis. It's definitely not a feeling I'm proud of or want to willingly admit, but if I'm being honest, that diagnosis was a punch to the gut as a first time parent and mother.

But, I can't even begin to express how grateful and thankful we are for our early diagnosis which led us to some of the most phenomenal therapy possible for children with autism spectrum disorder. ABA (Applied Behavioral Analysis) isn't the perfect fit for every family. But, for us, ABA therapy has been LIFE CHANGING. 

Our ABA therapists go above and beyond, day in and day out. They have helped us to be able to better manage Colton's aggression, anger, and self injurious behaviors. They have taught Colton appropriate coping mechanisms for his anxiety and anger. They have helped us with his feeding and sensory issues. They took on the huge task of potty training 2 long years ago (we are hoping the end is in sight SOONER rather than later.) They have loved our child when he was certainly unlovable. They have given their all, their time, their love and their knowledge and expertise into making sure that Colton grows up to be a productive and kind member of our society, no matter what he chooses to do with his life. They have taught Colton how to get along with his peers, how to play appropriately with toys, how to deal with his BIG emotions and respond appropriately to adults. Aside from the social and cognitive skills he's begun to master, they've challenged him academically so that when we do mainstream him this fall at their sister campus in the Woodlands, he will be on par or above his neurotypical peers and will certainly be ready to go to public kindergarten in a year. As an educator myself, knowing that there are wonderful people out there willing to work with our challenging and special children is such a blessing. 

We have a wonderful tribe of autism families surrounding us that not only "get" our life and help us to celebrate those little milestones and moments, but also understand that life isn't always rosy and positive, and cry right along with us when the grief of parenting a "different" child starts to rear it's ugly head.

We have a supportive family, both immediate and extended who continuously remind us that we are doing an amazing job parenting, even on the days where we feel less than mediocre. Who, without much knowledge of autism, choose to educate themselves in order to better understand our world and our charming little boy.

We have an amazing group of friends who uplift us and have remained constant in our lives, pre and post diagnosis. Who, even knowing more times than not that we will say no, regularly ask us to do things. But also understand that sometimes the anxiety of going out in public is just too overwhelming at times.

We now have a jovial, happy, and hyperactive 4.5 year old little "man" with a personality the size of Texas. Who loves everything trains and knows the name of every Thomas character ever created. Who is affectionate (we only had to wait 4 years for hugs and kisses 😂), funny, and has the best mohawk in all of Houston. Who loves to jump up and down, FaceTime with his Grandpa, and show his cousin how trains move along the track. Who goes from sweet to sour in nano seconds. Who has the most contagious laugh and the most charismatic personality. 

We sure are fortunate to live this life. 

The road of life has been anything but smooth with roadblocks at every twist and turn, but I couldn't be more proud or more thankful that God thought I was strong enough to be this little boys momma. And if the last three years of progress is any indication of this child's future, I know he's going to do big things. And I will be right there beside him, cheering him on and being his biggest fan and advocate through life.

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!!!

Tuesday, February 16, 2016

Our Journey to ABA Therapy

Thinking back to where we were just a few short months ago, it's hard to believe where we were just 4 months ago in our autism journey.

In October I began researching other treatment options for Colton as I was incredibly unhappy, disgruntled, and discouraged with the therapy he was receiving through ECI (Early Intervention through the state of Texas). At 2 years old, he was primarily nonverbal with a vocabulary of two words. ECI still believed that two 45 minute sessions a month was sufficient of speech therapy, OT, and SST (social skills therapy). His social skills therapist constantly cancelled appointments and he continuiously regressed after each and every OT appointment. I was banging my head against a wall and was determined to find a better option for Colton.

I began scouring the net for alternatives and thats when my saving grace came in the form of a Facebook group that dealt with autism insurance in Texas. I spent hours upon hours reading, educating myself, and looking into ABA therapy, which is one of the most effective and best documented treatment options for autism. Through this group we were able to find an amazingly knowledgable autism advocate and insurance broker by the name of Jason Farrell of Farrell Financial. He deals specifically with finding the best possible insurance coverage for autism families. That's when ABA began to be a reality. After the sticker shock of the outrageous price of ABA therapy (most centers cost upwards of $130,000+ a year), with Jason's help, we realized how feasible and cost effective it would be in the long run.

In November we signed up for a secondary insurance policy through Obamacare's Marketplace (due to the Texas Autism Mandate, ABA HAS to be covered through the marketplace insurance, where as most self-funded companies chose NOT to cover autism related services). In December we found the perfect home for our sweet boy and un-enrolled him from his daycare center and on January 4, 2016, Colton was welcomed in to The Learning Lane family. He began attending The Learning Lane full time, 30+ hours a week, nearly the max amount of time that's proven effective. He is currently in a class of 5 students with 4 full time ABA therapists. It's completely one-on-one and tailored to his specific needs. Vince and I, along with his therapists were able to devise a treatment and behavior plan that will help Colton progress and make gains in all aspects of life - visual performance, receptive language, motor imitation, vocal imitation, requests, labeling, intraverbals, play & leisure skills, social interactions, group instruction, routines, dressing, eating, & grooming skills, and fine motor skills. He has goals, objectives, and specific criteria that he needs to master before a new goal is set. He also has a behavior plan which addresses his top 3 negative behaviors - dropping (throwing himself on the floor), biting himself, and hitting himself.

In the past month of ABA, he has gained about 15 words and we have been able to deal more effectively with his behavior at home and in social settings. We couldn't be happier with his progress and the amazing therapists that work with him on a daily basis.

I feel blessed, lucky, and ecstatic to be this little boys advocate and that we have been able to get him the best therapy possible at such an early age and look forward to continued progress!

Snow Day at school!

Saturday, December 12, 2015

One too many Mai Tai's

That time we drank all the strawberry daiquiris in the whole resort, made them run out of tequila gift baskets, and drank enough Mai Tai's to last us the rest of our lives. 12 days after the death of my mom, my family and I boarded a plane to Playa del Carmen, Mexico for my Biggy's wedding. A crazy, drunken, and family filled week of wedding shenanigans is just what we all needed. Although our mom was never far from our minds, we all managed to have a great time, just like she would have wanted.

Happy Anniversary & Cheers to 2 years Michael and Karina!

Rehearsal Dinner
Rehearsal Dinner
Galligan & Benetiz Family

Pre-Wedding Fun
Morning of the wedding
Before the ceremony
The boys before the ceremony
Sissy & Biggy <3
The Wedding Ceremony 

All the guests!

The Reception

Mother/Son dance with my Biggy. Emotional is an understatement.
Mother/Son dance with my Biggy. Emotional is an understatement. 

Cigar bars are soo much cooler than candy bars!

Matchu rolling his cigar
Galligan Trio. Love my sibs!
It's not a true wedding until Scruggs takes his shirt off.

The After Party