Today

Today, August 13, 2013


Its 11:30pm and I can’t sleep for the life of me….the events of the day are still spinning around in the back of my head. “Yes, your daughter has Autism.” Oh those words that my husband and myself heard today only confirmed what we knew all along: Autumn is Autistic.

The tears started to form around my eyes as the doctor continued to disclose as to why she meets this criteria as the two nurses shook their heads in congruence with his words. We talked “mental health” jargon as Matt called it…”what grade of ASD? How much therapy? ABA? Prognosis, etc.”

I had mentally prepared myself for this day for months so I was okay. My husband, well I could see the hurt in his eyes. When we told his parents in person shortly after…the pain and disappointment in their eyes too. Talking to my mother and sister over the phone, the disbelief in their voices and sadness as I knew they were in pain knowing the journey for us all would be quite long.

A part of me wants to cry, have a “poor me, wine o’clock party” while the other part of me wants to just keep my big girl panties on and take it day by day. I am choosing the second, but don’t be surprised if I relapse and have some wine now and then.

Most parents would cringe or think it’s their “worst nightmare” being in my shoes right now, but to be honest, I am okay. Seriously I am going to be alright. Don’t worry about me, worry about Autumn and all of the trials that she will have face to overcome basic obstacles in her life. She has a long road ahead of her filled with potential social conflicts, stressors, and just getting through the combats of childhood so that she can reach her adult years. Luckily she has family support. Luckily she can possibly “climb out the window” thanks to early intervention and having a tough “helicopter mom” (that’s right, I said it) who sets the rules and boundaries that she requires in order to flourish…oh and a fantastic dad to boot.

One day at a time…one step at a time…small victories…the things that people who don’t know what its like to struggle intellectually, mentally, and physically (myself included here) have taken for granted until today. Today it all makes sense. Today I am at peace. I’ve accepted her Autism as a characteristic, that’s all it will ever be. Autumn isn’t going to be defined by one word. She will define her life based on her choices and experiences (with the right guidance of course).

Its sort of funny because I feel reborn today…tonight…into a more relaxed, I don’t give a crap what others think anymore, type of person. All of the things I festered about previously no longer matter. How I was as a parent, what I’m doing with my life, where I’m going…. Simply I don’t give a shit right now about “those things”. All that matters is making each day count. Putting the people I love and care about first. I want what’s best for my daughter and darn it, she will get it. I live for her now. Yes I live for me too, but she’s the main reason why I wake up each day and now I just received further affirmation as to why I need to be there for her more than ever, which means making sacrifices that I never imagined before she was born.

When I look back at the things I’ve accomplished in my life, the career paths I’ve chosen, the people I’ve been blessed to help and meet, who knew that all of this was preparing me for something much more greater in life? God definitely has a funny way of showing me this within my own child.

Those that are reading this, friends, family, anyone….don’t and I mean don’t feel sorry for us. We are strong. I am strong and believe me, there are worse things in life. I actually feel blessed. My daughter, my beautiful butterfly, is even more original and unique. I can only dream about her future talents and how she will excel. How she will achieve her goals. How loved she truly is. I can also only dream of the day when she will be able to verbalize her feelings, her wants, her needs, desires and love in return (things people take for granted). I can’t wait to hear her tell me “I love you mommy”….when that day comes, my life will truly be complete. I know it’s going to come. I have hope on my side.

So here’s to tomorrow. Another day, another step, and another small victory.

The Prelude

Autumn’s Journey began years before she was born. I wanted to become a mother in the worst way possible, but due to grad school and other factors, my husband and me decided to wait until we felt financially ready to become parents. Now if it were up to Matt, he’d still be waiting! So after eight years of dating bliss (married for 3.5 years), we decided to jump off the cliff and throw caution to the wind. I received my BFP (big FAT pregnancy) on October 27, 2010, after two months of “trying”. Needless to say I was beaming with glee. I endured a very beautiful pregnancy. I kept track of every little detail, from the first sounds of a fast heartbeat at 156bpm to my belly growth and finally showing after our baby moon to Vermont (at 24 weeks). Embracing all of the joys of “all day” sickness, to the exciting anticipation of those ultrasounds and getting a glimpse at my beautiful baby girl that I instinctively knew I was having. I can go on and on. I loved being pregnant. Every second of it. Yes, I was one of those annoying women who truly relished in her changing body, prancing around like a princess from a Disney movie, as if I was the “queen of the world”. I completed personal milestones with my baby girl bundled up inside and had the best support from family, friends, and colleagues alike. Life was perfect.

The Birth of Autumn

My baby girl came on her own terms at 3:51am on Sunday, July 10th, 2011. My birth experience was a good one. It was quick and relatively easy despite taking an Ambien due to being under the presumption that I was going to be induced at 8am and would need my rest for Pitocin. I went from zero to ten centimeters within an hour and she was out within an hour after that…pushed for 20-30 minutes, if that…so yeah…again very lucky… easy labor and delivery.

When she first came out, she wasn’t screaming, she was quiet, but they said it was because she came out so fast. All I cared about is why wasn’t she screaming like the babies they portray in the movies and what was that mark on her face…will she be okay? She was perfectly fine. Her birthmark was in a shape of a heart/V and now I can’t even picture my darling angel without it. I nursed her as soon as she came into my arms and it was true love, love so unimaginable that I can’t even describe the magnitude of that very moment she was no longer in my uterus but in my arms and laying peacefully on my chest.

The Days That Followed

I had horrible baby blues despite being in such a grandiose place during my pregnancy. I was struggling with breastfeeding and ended up given in to formula after my milk supply went kaput and I could no longer feed her without having horrible thoughts. It was for my and her safety that I discontinued breastfeeding. I cried often about her getting older and her infancy slipping away from me, plus my inability to nurse her like I did during the first few weeks of her life. Everything was trial and error. The snuza and her rock and play sleeper were my life savors. Its actually kind of funny looking back at the mom I was becoming. Autumn was my teacher and I her student during the so-called “dark ages” of baby spit up and sleep deprivation.

Autumn’s First Year

Overall, Autumn was such a wonderful baby. She was happy most of the time, slept through the night, and ate anything we gave her. We were truly blessed. She started to meet most of her milestones at the typical age most babies do: rolling at 5 months, sitting up by 6-7 months, crawling by 9 months, walking by 13 months. She said her first word “dada” by 9 months and said “mama” to me on my first mother’s day. She was truly coming into her own. We spent much of our time just being us girls as Matt was working two jobs a good 3-4 nights a week. I really missed him and felt very guilty that he was working so much after I received my MA Counseling degree. So I decided to work part-time so that he didn’t have to work part-time anymore. Probably wasn’t the best choice due to missing Autumn terribly and Matt being non-prepared to parent her since I did most of her caretaking duties daily. I am glad that I was able to gain counseling experience, but felt like it was at what cost…my husband being miserable, Autumn miserable and myself as well…but we adjusted and life was good.

Autumn’s Second Year: The Unexpected Detour

I noticed a change in Autumn around November, right after the devastation of Hurricane Sandy. She started to diminish her vocabulary and appeared more distant from family relatives, especially from Matt. It was around 19 months that I knew something about her was “different” as she would flap her arms, spin, tip toe walk, line up everything, and scream when things weren’t in order or the way she wanted and she wasn’t picking up on new words and would not respond or turn when her name was called. I decided to call Early Intervention Services to see if I could have her evaluated for speech and this was around the time Autumn was 20 months. I also decided to have her hearing checked and after going to two different audiologists and an ENT, she had fluid build up in her left ear and needed tubes. I thought that she must not be hearing, hence why she isn’t responding to us or picking up on words. She had her tubes put in on May 3rd and I got to watch my beautiful baby girl be put under for surgery. Not a pleasant experience, but I knew she would be fine. I thought that she would start talking right away and guess what? Nothing had changed. Her vocabulary stayed the same. I was definitely disappointed and my gut feeling told me something else is wrong…it’s not simply her hearing.

Now back to EI. They determined that she qualified for speech and developmental intervention services due to her lack of speech, inability to focus, make eye contact, and her “stubborn” behavior of not wanting to interact with others, and being very self-directed, etc.,. It was very difficult to hear she qualified, I cried during the meeting blaming myself for why Autumn must not be advancing and questioned my parenting skills often during this time in our lives, but I knew it would help her if she received additional help. She began speech therapy during the middle of April and then we decided to push the DI therapy off until June due to my hope that the latter would improve once the tubes were in. During the time spent with each therapist, things improved a little, but still with a lot of difficulty, repetition, and patience. To get my daughter to say the word “milk” was like pulling teeth from a disgruntled tiger. She had tantrum after tantrum, but finally said the word after an hour of working with her…talk about a yahoo moment, but still bittersweet as I knew the road ahead would be filled with many detours and road blocks. It had taken us three months to get her to say milk without the frustrations that accompanied each time and this was due to working with her nonstop. Small victories they say right? Right. Rewind. June: it was suggested by our service coordinator, her two therapists, and her pediatrician and ultimately my and Matt’s intuition to have her evaluated by a pediatric neurologist just to rule out any other underlying issue. Well August 13, 2013 will always be a defining date in my life: her diagnosis date…and here we are.

I seriously wasn’t going to write about Autumn due to personal and family privacy but I feel like her story is worth sharing and since writing has always been one of my favorite pastimes, the blogger in me has once again won. I also realized that I am not embarrassed or ashamed of my daughter’s diagnosis, despite the stigma and presumptions attached to Autism.

The main reason I decided to start a blog again with the focus on Autumn is that I am compelled to share this journey with others mainly so that people know they’re not alone and to hope to document growth within my daughter. I am not out to exploit her, gain sympathy from others or attention. I just want to help get the word out that females can be diagnosed too with ASD (Autism Spectrum Disorder), predominately a male diagnosis, and that despite how well one may plan their life to a tee, God has better plans (even though it may not seem like it). I don’t believe there is a cure for Autism, just like one being bipolar; it can be managed with the right types of support tools. The post titled “Today” is something I wrote on the night of her diagnosis. Please take a read. It describes my exact thoughts and feelings on that special day of my life.

About

Trish:
Starr. Pisces. Intuitive. Singer. Music Lover. Laughter. Ocean. The Shore. Cape May. Butterflies. Nature. Travel. Pinterest. Cooking. Coffee. Dunkin Donuts. Bacon. Hula Hooping. Yoga. Pilates. Daughter watching. Soul Mate. Lover. Jersey Girl. Fighter. Rocking. Wine. Cautious driver. Counselor. Wife. Mama. Daughter. Friend. Innovator. Daydreamer. Writer. Advocate. Loud. Sensitive. Dramatic. “The Guardian”. Me.


Matt:
Loyal. Trustworthy. EDM. Dubstep. Music Lover. Sound System. Workaholic. Ocean. Ortley Strong. Sea-Glass Collector. Handsome. Tall. Body Boarder. Kind. Quiet. Fun. Reserved. Family Guy. Husband. Daddy. Travel. Dunkin Donuts. Consumer of Sweets. Foodie. Craft Beer Enthusiast. Simple. Loving. Organized. Sewer Operator. Hilarious. Nature Lover. Dog Lover. “The Captain.”


Leah:
“First born”. Food-driven. Fast. Loyal. Playful. Patient. Loving. Fun. Labrador-Retreiver Mix. Protective. Hates Water. Obedient. Our “Keeper”.


Autumn:
Beautiful. Curls. Blue-eyes. Tall. Dancer. Jumper. Squeezes and Hugs. Runner. Books. Cards. Puzzles. Blocks. Outside. Laughter. Smiles. Fun. Energy. Active. Water lover. Car rides. Signing Time. Cookie. Ice Cream. Nuggets. Applesauce. Pocoyo. Cuddles. Music. Independence. Stubborn. Therapies. Sensory. Daughter. “Belle”. Butterfly. Perfect. “The Good”.