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!

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!

Galligans

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

The Day I Thought My Heart Would Explode With Happiness

I have some really, really awesome news.

And I mean AMAZINGLY AMAZING news.

I OFFICALLY HAVE A WALKER!

That's right - my precious-almost two year old-stubborn and hardheaded toddler took his first steps last Friday while I was out of town at a funeral.

Cue ugly tears because ugly tears are exactly what was streaming down my face when I saw this video of Colt at daycare. Be still my heart little boy!

I think all momma's struggle at some point with comparing their child to other children around them. But, it's an even bigger struggle when you are the parent of a developmentally delayed child. Colton has always been behind in comparison to neurotypical children his age, but the older he gets, the more apparent and obvious those differences become. Previously, I still made the excuse that he was just "a little behind." But, there's no denying the fact that my baby is different. 

After his autism and chromosome disorder diagnosis, we attempted to bombard ourselves with research. We tried to cram every little bit of knowledge in our brains. Anything that had to do with autism, 1q21.1 microdeletion, sensory processing disorder, and apraxia of speech were on the forefront of everything we did. We knew Colt's two biggest struggles would be motor and speech. And that couldn't have been more spot on. We finally feel like we've made some headway in the motor department and although that is a load lifted from my shoulders, it just reminds me that we have such a long way to go in the speech department. I've been so focused on PT, strengthening his weak ankles, and walking practice that I have completely put speech on the back burner. Now that we have somewhat conquered one beast, I know I need to be better and more proactive in finding quality speech therapy for him. 

Although this little boy can't formally say words - he's never been short on something to say. He babbles ALL the time! It's so very precious but I really, really wish I knew what he was saying. The lack of communication has been the major source of meltdowns lately. Not being able to communicate with each other leaves us both frustrated, upset, and angry. 

It's really hard to believe that my handsome little baby is about to turn TWO YEARS OLD. Seriously, where has the time gone? It feels like it was just yesterday that I was feeling his little baby flutters and kicks in my belly and here he is, becoming such a big boy! 

Although I am SO happy to be seeing TWO - because let's be honest, the infant and baby stage was far from my favorite. But, the older he gets, the more mommy anxiety I get. 

Where will he fall on the spectrum? 

Will he be non-verbal forever? 

Will I ever hear him say "mommy" or "I love you?" 

Will he ever live independently? 

Will he be in diapers forever? 

Will he ever go to college?

Get married? 

Have children? 

What will happen once Vince and I are gone?

Will I ever be able to monetarily afford to give him the best possible life - along with all the help and therapy he deserves?

All of these questions and more float through my head on a daily basis at the speed of light. I try and keep a positive attitude, live in the moment, and be thankful for all the little successes. I tell myself that things could be much, much worse. And while I understand that and realize that, it's still hard to be upbeat when other kids are making laps around us in terms of development. While I bask in all the things he does and all the progress he makes, I still constantly question why and what I did to deserve autism in our life. 

There are more days than I care to admit that I grieve for the child I had envisioned Colton being when I first became a mother. I grieve for the dream I had for his life. I grieve for the difficult road we have ahead of us. I grieve for the "normalcy" of parenthood. I grieve the things Colton will miss out on because of the dreaded "A" word. I grieve the fact that our life constantly revolves around therapy, specialists, and intervention. I grieve the fact that all of those things are monetarily bleeding us dry. I grieve the fact that I can't give Colton the care and attention he deserves because I'm forced to work full time. I grieve the fact that I will never end up having the big family I wanted because the chance of having another child on the spectrum and with the same chromosome disorder is just too big of a chance to take. I grieve the fact that Colton will never have a sibling and have the type of relationship I have with my brothers. I grieve, selfishly, for the fact that I may have to take care of him for the rest of my life and never feel that "empty nest" feeling later in life. I grieve the fact that anxiety now consumes my life and that going out in public puts me into near panic attacks on a daily basis.

Despite those feelings of grief, I realize that just being able to make it this far on our journey is reason enough for celebration. And celebrate we will little boy, celebrate we will! 

Welcome to our new journey...

I know that my last post mentioned that I would no longer be updating this blog... But, at risk of losing all my old posts, I decided to make some changes.

And with a new layout and a new direction, A Day In The Life officially became Life Through A Different Lens!

The last few months have been overwhelming, time consuming, depressing, and honestly, EXPENSIVE. We have embarked and began a new journey as a family. One that if you would have asked me 6 months ago that this would be our life, I would have laughed at you (uncomfortably). Because, the truth is, I've known.

I didn't need a neurologist to tell me that my son had Autism.

And although I've felt it in my heart for months now, the news that he was officially autistic hit me like a ton of bricks. To say the least, I was devastated. Vince was devastated. Our families were devastated. To hear that something is 'wrong' with the child you deem as perfect would crush any parents. It was like being intitated into a club you wanted no part in. This is not how I pictured my life. This is not the life I pictured for my son.

But, the reality is that this is our life now. This is our "new normal." And at the end of the day, Colton is still the same little boy he was pre-diagnosis. Now, he's just a little more special.

Please sit, stay a while and follow along as we begin maneuvering through this crazy life on the Autism Spectrum!