Tuesday, December 30, 2014

2014: The Year of Letting Go

As we fast approach 2015, this is the time when I usually reflect on the past year: the amazing moments, the lessons to be learned, and everything else in between. 

2014 was also the year of Disney's Frozen and all things associated with Frozen mania. 

For our little family, Frozen and learning to "let it go" has been our motto. I know were not the only ones who were inspired by Frozen, who adored the characters and felt that kind of connection, but when I say that this simple yet powerful movie brought this family even closer and "transformed" each one of us, I'm speaking the truth.  

I admit, the first time I saw Frozen I wasn't that impressed. It was on my iPad and I was distracted a bit, but it was the first movie that my daughter sat down to watch. She ended up falling alseep after the first scene, but I was like, "wow, okay maybe were onto something." I ended up renting the movie for us all to watch, and after the third attempt, we sat there as a family intrigued. Finally, I purchased it and we've probably watched our copy at least 100-150 times since, no joke. 

Now, the thing for our little Autism family and many others out there, once our kiddos have a routine, it's difficult to break it. Watching Frozen became a part of Autumn's nightly routine. Dinner, bath, books, Frozen, bed. We all relished in this routine because something started to happen that I credit Frozen for doing: 

1. Her relationship with her father strengthen by watching this movie together.

2. Autumn's vocabulary increased immensely by repeating the words said and sung throughout the film.

Before Frozen, Autumn struggled to make a connection with her father and as much as he tried, it was difficult for her to sit with him and formulate that bond. This was extremely heartbreaking for my husband. Imagine one's child not really wanting anything to do with them no matter how hard they tried. Because of Frozen and their popcorn routine, the two of them are inseparable. Autumn talks about her daddy, greets him when he comes home and sits with him nightly as he reads to her. Frozen helped them make that connection. Frozen gave my husband a daughter and her a dad so if anyone from Disney happens to read this, thank you forever for making our family become whole. 

In addition, every word, song, and moment being portrayed during the film, Autumn danced and sang along. She started to repeat words, phrases and now, she's able to sing sentences to the songs. I don't care if it's scripted speech, my kid is saying words and singing! A year ago, I wasn't certain if she'd be able to do such a thing. Also, everytime the beloved Elsa would come onto the screen, Autumn went crazy for her. She would verbally stim with sounds, spin and flap with excitement.  I know many little girls love Elsa because she's "magical" and maybe that's why Autumn loves her too, which is really cool because she too is making that connection. Still, seeing her light up everytime she saw her beloved "queen" always put a smile on our faces. In addition, after watching this movie on numerous occasions, my husband and me started to see many resemblances within Elsa and Autumn: both of them being born "different" and having to "conform" to societal norms. The more we watched as a family, the more we evolved as parents and within. 

Elsa taught us how to "let go" this year. To let go of the expectations set forth onto others and ourselves and to "come out" of our shells and stop pretending to have it all together, when were human and we don't. She also taught us to embrace our daughter and her autism rather than trying to "conceal" her stims or sensory issues that may set her a part from society as a whole. Elsa being "different" has helped me see my daughter in a brighter light. Someone who's beautiful and capable at achieving anything as long as she has the love and support to thrive. Now this where Anna comes in. She always loved her sister no matter what. That is why Disney writers (spoiler) probably chose to not go back to explain things to her when she was at the trolls with Kristolf and he says "I've seen this done before". It didn't matter to Anna, she loved Elsa unconditionally regardless of her magical powers. You see, I've spent way too much time watching and analyzing this movie (insert LOL)!

Overall, 2014 was filled with all things Frozen in this Autism household. We learned to let Autumn go and grow. She started preschool this year and it was very difficult for me to begin to move forward from EI services to preschool because moving forward meant that I had to let go of my fears and introduce change into our lives. It was also the year of many tests, tears within personal family struggles, and transition. At the end of it all, we survived.

Even though the Frozen hype isn't over yet, here's to hoping that 2015 is filled with much love, less stress for all, and more time to spend together as a family. 

I end with a quote I heard from my beloved sister, "Love is a four letter word: time." Let's make the best of it in 2015. 



The year of Frozen: 

Autumn's 3rd family birthday party. 

Autumn asleep on her daddy while watching Frozen.

Autumn as Elsa on Halloween

Autumn looking magical here during our holiday pictures 

Wednesday, December 17, 2014

Confessions From an ASD Child's Mother

Today I've decided to share something very personal, yet I know many can relate towards....drum roll please:

"Hello, my name is Patricia and I'm depressed." 

Whew, there, I said it and boy does it feel good. 

You see, I've been depressed for a long while now, but I've been fighting these urges for as long as I can remember. Maybe it was denial or shame, but I'm done living a lie and pretending to always have my stuff together. I don't. Not even close. So please before proceeding forward, do not pity me. I'm simply admitting defeat, and I feel relieved for waving my white flag today. 

Anyways, I know that being a parent feels like a very lonely road, add autism to the mix and take that lonely road times ten. 

Then take distant family members who only see your child a handful of times a year and act like they know what's best for them or pacify your concerns because they only see a glimpse of what you have to endure on a daily basis, add another five to the above number. 

The constant reminders from therapists, teachers, behaviorists, doctors and other "experts" informing you as to what is "best" for your child and the pressure this causes on said parents, add a three.

The little time said parents have to spend together to focus some time on their marriage because everytime they talk, there's interruption, they sleep, interruption, want to eat, interruption....you get where I'm heading towards? So by the time they DO have time together, they collapse and the LAST thing they want to do is spend quality time bonding because they just want to sleep. And we wonder why couples of special needs children have an 80% divorce rate?!

That every moment since the diagnosis, said parent's lives have been derailed. Their plans professionally, financially, physically and mentally have been put on hold in order to focus on their child's needs because "the child comes first". Hence no money, no time, increase in weight gain, decrease in everything else, etc.

All of the above factors, plus others I'm not even going to mention, are reasons as to why I've been depressed, but never fully admitted it to myself because, I'm supposed to be perfect right? Hahahha I wish. I feel like a horrible mother most days because I struggle to control my daughter, to make her happy, to "disipline her" due to not having all of the answers. I feel like I should because I'm considered an "expert" within this field and the secret is, I am not even close. 

It's been such a difficult pill to swallow having to relay on other "experts" to help my daughter when I haven't been enough and I'm never going to be enough for her. Yet, I work with kids like her and do my job well. Why is it that I can help them, but I struggle with feeling like I haven't been able to help my own child like I do my families? I know, I'm taking on a lot when I say the above and have become better at accepting the fact that her autism isn't a result of my bad parenting. It is just a part of who she is. It's that uniqueness that makes her special. 

However, the realization that my daughter's diagnosis and this journey were on will be lifelong, hasn't been easy on my husband and me. That I feel like I've already given my all to help her and that some days I loose it and I cry and I hate this life and wish I was alone and could run away from it all...but...I'm not a coward. I will NEVER do that to my sweet girl or husband. Ever. I realize that I can beat this fog. That I deserve my happiness. That I don't have to resort to antidepressants to clear the air (just not for me because it will make me worse- I've tried).  

Thus, I've made a decision, an investment for my future and happiness today that will begin in let's hope, two weeks from now. I got myself a treadmill (thank goodness for financing and holiday sales because we can't afford to buy one outright). I'm going to dedicate time to myself each day and exercise my ass off so that I can decompress and start to feel better about myself again. I need something. We all need something. This is and will be my something. 

I've decided that in 2015, I'm taking back my life. I'm going to train for a 5k and run someday. I'm going to run for autism awareness, autism acceptance and love. I'm going to run for our daughters and your sons. In going to continue to advocate for the beautiful people within this community. I may cry, I may fall while doing so. I am human and I will get back up keep moving along.

That's what this ASD child's momma is great at doing: falling, living and learning. 

Today is the day I've decided to combat my depression, admit that I have a problem and do something about it. Maybe tomorrow will be yours. Maybe not and that's okay.  

Hang in there. 

With love because I too "get it". 



Wednesday, December 10, 2014

Tis The Season

Lately, I feel like I've been flatlining. The holiday season is upon us all and that's enough to send anyone into a tizzy. 

With snow, sickness spreading around the household, and new demands at work, I just wish I can throw my hands up in the air and walk away or plan a really nice long vacation to be taken in my wildest daydreams. The vacation planning sounds more reasonable.

Anywho, I was waiting for Belle today during dismissal and those effing feelings of meloncholy came over me as some older kids walked by with their smiles and language in tact. Then at OT, hearing a mother and her child the exact same age as mine conversing over the snow falling outside and how easy speech seemed to be brought on those thoughts again. Lastly, scrolling through my Facebook feed seeing pictures of happy kids with Santa, kids participating in holiday functions smiling and engaged, and those darn elf on a shelf pics because even at three, their little ones understand the concept of the elf...and here comes the flood gates...

Damn it!! I thought I've been feeling so good and in a happy place regarding Autumn and her progression, but little moments like the above are getting the best of me. Why can't I just accept the fact that Autumn isn't like my Facebook friends kids? She doesn't give a shit about presents or Santa or making Holiday cookies! She may not ever care about the above and for a while, I was okay with that until it really hit me while driving home today as I questioned every  messily thought pondering in my head: Why? Why do I care? Why again? Oh yeah now I know why...

My memories of Christmas time as a child growing up in Nashville, TN takes the cake. The holiday visits to Opryland hotel, picking out our Christmas tree, listening to classic holiday music, the cookie baking, the blue lights, mass and choir music, and the fun family gatherings.  However, my favorite was the anticipation of waiting for Santa to arrive, falling asleep and then waking up my siblings and sneaking downstairs together to see the presents around our silver and blue decorated Christmas tree and goodness, oh how those short moments felt like magic! That's when my family was whole before the innocence of life was taken from each one of us with age. Oh how I miss those times so much. 

Fast forward to now, adult Trish, who tries so hard to keep old traditions alive even though they feel beyond her reach. Having a daughter with autism who struggles with doing "typical" holiday functions isn't easy to watch especially when her mother lives and breathes "hark the herald angels sing". I know she's still young but I remember when I was three and celebrating Christmas. I remember it because it was our first Christmas in Nashville. It was also when this occurred:
Oh the joys of having to share presents with the sibling on Christmas (I was such a spoiled rotten brat that even the elf on a shelf probably wouldn't have worked for me).

So why does it matter to me so much? Because Christmas time and the memories of this time of year are probably the best memories I have of my childhood and life. I so desperately want my daughter to get to experience the joys of Christmas that it's a pain in my heart knowing that were just not quite there yet with her and I need to accept this and move forward without putting more expectations onto her, but I'm having a difficult time accepting this and I just don't know how so I feel stuck.

Even this past weekend, in all of my sick glory, we went to the Caring Santa event sponsored by Autism Speaks and even though I loved that something like this was being offered to special needs families, Autumn STILL wasn't interested or ready for Santa Claus and I knew that going in, but why did I have her go? Why did I try? Hope. Hope that maybe just exposing her to Santa and to Christmas/holiday decor she may have a breakthrough, she may start saying "Santa" or "Christmas" like she says the word "speech". Maybe she'll want to help mommy bake cookies this weekend or go pick out presents for loved ones or want to talk about the snow over some chocolate milk/warm cocoa. Hopefully someday. Hopefully...hope. The hardest part is not knowing when that "someday" will be and that's why this time of year is beautiful, but hurts for many families like mine. "We keep trying, hoping, shinning, praying for a miracle that someday will be on the horizon." 

Until then, I will continue to try to make the best of our experiences together. I will continue with traditions but modify them according to what my daughter is capable of experiencing and call it a day. 

That's enough for now. Here's our Holiday card that I made for this year. It's probably one of my favorite pictures ever. I absolutely adore it as this is a memory within itself. It may not be a Nashville Christmas, but it sure is magical!