The Rainbow Connection to Positive Reinforcement

Over the last few weeks, Autumn has been displaying more outbursts within her private therapies as well as at home and in school. She doesn't welcome change easily and continues to have trouble with transitions despite the many different plans/coping mechanisms set in place. 

After speaking with her teacher, SLP and the school psychologist (her case manager), we've all come to an agreement that it's more behavior than anything else. I come to also learn that my daughter melts down whenever the classroom door is left open or if someone else sits in her seat (partly my fault because I like our bedroom and bathroom door shut and we sit in the same seats at home-opps). 

At home she becomes extremely upset if I were to move her blocks on the carpet or do something out of her routine. During her therapies, whenever she's challenged, she tries to avoid and escape so she screams until she gets her way as Autumn doesn't like change period. She likes familiarity and sameness, that's all great, but doing the same things over and over again doesn't challenge her or allow her to grow beyond those skills.  

Thus, many know that there's nothing better than positive reinforcement. Children thrive on being praised for good behaviors. Who wouldn't right? It's so nice to be recognized for doing "good", but it's also important to be confronted when doing something that's potentially harmful or out of context for that individual person. 

Therefore, I've decided to make a few fun charts to reinforce the positive behaviors that Autumn's doing at home. 

Now everyone has their own methods regarding positive behavioral motivators and what works for their family. I still need to fine tune some areas, but below is a good example of what I've implemented at home (her potty chart will be entirely separate and not shown here-that's a different topic for a different day):

In the above picture there are two charts. I will explain each of them here and how I will be using these on a daily basis. One is more "long-term" the other "in the moment".

First chart is what I'm calling "The Rainbow Connection". It has six different levels for all-day behavior. It reads:

Awesome!

Great Job!

Good!

Warning 

Time Out (starting out at one minute)

Lose Privilege (take away for five minutes)

***Im starting out with small minutes and as she gets older, then I will extend the minutes.

***This chart also includes a jar of Pom poms (marbles or tokens can also be substituted).

Each day Autumn starts at "Good". She will start each day with three Pom poms and has the opportunity to receive five Pom poms total a day. If she misbehaves, she will receive a warning (lose a Pom pom) but if she doesn't, she will gain Pom Poms (confused yet?). Once she fills the jar (has the opportunity to do so in one week), she will get to choose something out of her "Prize bag". The prize bag consists of toys that have never been open or given to her yet as we tend to rotate her toys around rather than give them to her all at once. 

The purpose of this "chart" is to support overall positive behavior during her day and to hold her accountable for when she's doing something that's not acceptable here at home. 

The second chart is her sticker chart. This is more "short-term". On the left side of the chart are things that Autumn does that deserve praise and stickers. They are:

Waits

Listens

Shares/plays nicely

Walks/walks independently up and down stairs

Asks for help/uses her words

Uses inside voice/no screaming

Is gentle with sissy 

Tries new (fill in the blank)

Cleans up 

I know, the above sounds like a lot, but these are all areas that Autumn will need to do as she grows older. Autistic or not, she will need to learn how to wait in order to help her with transitions. She will need to learn how to play nice so that she can make friends. She will need to learn how to clean up because frankly, this mother is not destined to be her maid, plus it teaches her self-adaptive skills that are vital to her independence. 

So each time Autumn does one of the above, she gets a sticker (she picks the sticker and puts it on herself) and then gets to choose an activity to do.

Those activities are:

music (dancing to her favorite songs)

iPad

Kinetic Sand

Trampoline (jump)

Legos

Book (reading her favorite ones)

*** I left out food because I don't want that to motivate her, she's not a puppy and even though I know she would LOVE her chocolate and would ask for it each time, I'm not going to give it to her every single time she does something positive. It would be too easy. 

I also plan on using actual pictures of the above and then Velcro them once I get laminate paper, but for now, Autumn will tell me what she wants and the pink hearts are working alright. 

Right now, the iPad and her Legos are her biggest motivators. She loves to build and do puzzles on the iPad. She also loves being praised and getting to put her stickers on. 

The goal is to try and fill up each area each week so that I will be able to keep track of her overall progression. For example, if she fills up "waits" now for weeks, she probably doesn't need stickers anymore for this area. It will be replaced with another skill. Or if she isn't getting stickers in "trying a new food" category, we will have to work on this area more than possibly the others. It's also a great visual for her to see. Autumn is a visual thinker and it's easier for her to understand things when she sees them. More stickers equates to less space on the board, which means lots of praise and hard work on her behalf that's she's doing without prompts.

Now I know that many of you are probably thinking, "The above looks an awful lot like ABA. I thought that you HATED ABA therapy with a passion?" Yes. You are all correct. I dont care for the "traditional methods" of ABA. The forcing a child to do something he/she doesn't want to do such as the elimination of certain behaviors (stimming, scripting, etc.) in order to "blend in with society". That's not what I'm doing here. Just positive reinforcers such as stickers and Pom poms to keep up the good work. I'm not forcing anything onto Autumn. She's not strapped in a chair and made to do the things listed above in order to comply. She's already doing them. Again, this is just another way to reinforce those positive behaviors and skills she does and knows.

So far, it's working. Autumn does something similar at school and she loves it. 

Hopefully she'll love it at home too. I wanted to try something fun for her to do, that would also reinforce me to keep my patience and cool with her as well. Sounds like a win-win situation and let's see how far it takes us. 

Xoxo,

Trish 

Our Yearly Neuro Visit

I'm still trying to wrap my brain around the words that were said the other day. We had Autumn's yearly follow-up with her pediatric neurologist and everything mentioned was what I figured he would say in regards to "continuum of care", but the prognosis part,  I still don't know how to feel about this. 

I knew that this past year has been filled with many accomplishments and achievements from Autumn due mostly in part to her intensive therapies and beginning preschool. The work doesn't stop there as we implement a lot of floortime at home with her as well (side note: I hate and I mean HATE traditional ABA with a passion and it will not ever be used on my daughter-floortime it is). She pretty much leads us in almost every aspect of her daily routine! 

But before I share what was suggested, I want this beautiful community here to know that I love and adore Autumn just the way she is. I don't care that she's Autistic. In fact, I love that she's autistic because it's something uniquely special about her and the way she sees the world. I accept every part of her being. I just want what's best for her so that she can live the best life possible. That means helping her develop the coping and communication skills necessary that will allow her to navigate through her surroundings. As said throughout my many rants: Autism (for me at least) is not and I mean NOT a tragedy. It's not a disease that needs to be eradicated. The most beautiful minds are autistic and keep this crazy world in order with their extreme brilliance and organization. Thus, the opinion of one person, in this case her neuro, is not the opinion of all. 

So after seeing/observing Autumn, the neuro recommended the following:

1. full-day school for her after she turns four so for the 2015-2016 school year.

2. He also suggested more in-school therapies and said that once she's in school full-day that the outside therapies should be decreased or completely omitted as it would be "too much" for her after a long day at school. 

3. He also wants her to be included in the general ed preschool class for snack time and other specials because he firmly believes that children learn/model their behaviors from other children and yes, her special ed class has been great for this, but learning from "NT" children wouldn't hurt (I also know that's the goal in special ed-inclusion). 

4. He also recommended that we sign her up for something like swimming or gymnastics that will expose her to typical peers and for her to do something other than "therapies" as our lives have been consumed with extra therapies every day except on Fridays we have our free day.

During our appointment, the doctor mentioned and noticed "splinter skills" within her memory as well as cognition. He stated that if Autumn doesn't make much progress within "socialization skills" (which I kind of shrugged here because she loves kids and people, it's just getting her pass those ice breakers), she will display symptoms along the lines of  "Aspergers", which is perfectly fine by me. 

I must say that I love her neuro because he didn't push extensive ABA therapies onto us. That he wants Autumn to also enjoy a "typical" childhood not entirely consumed with therapies. Luckily, Aurumn enjoys her therapists and it's "fun" for her. It's also been one crabby winter to do anything truly fun together so once the weather warms up, we'll be back at the playground and doing fun things again. 

Now this is what threw my husband and me for a loop as I wasn't expecting to hear these words. Quoting her Pediatric Neurologist: 

"In the 26 years that I've been practicing pediatric neurology, only a handful of my patients became undiagnosed with autism because they no longer meet the criteria for diagnosis. Reason being was because of early detection/diagnosis by age two and intensive/aggressive therapies and supports set in place. In addition, all of these children had a doctor (parent's profession) as a parent who knew how to formulate the best treatment plan/goals for their child. Which brings me to this, Autumn has made tremendous amount of progress within the past year that surpasses what we usually see/expect among the Autistic population. At the rate she's progressing, I believe there's a high probability that someday, within the next couple of years even, she too will no longer meet the criteria for being diagnosed on the autism spectrum." 

So even though what was said was a message of hope and possibility, I personally don't believe Autism is something that can "just go away". Even if she does get undiagnosed someday, she will always (in my mind) be autistic. It's great knowing that we have a team of professionals who do believe that Autumn has amazing capabilities and they don't see her autism label as holding her back in life. That, my friends, is true acceptance.

A part of me is angry at myself. I had shared this news with family and friends on my regular Facebook page and received many wonderful comments, likes, etc. I know everyone was/is trying to be supportive, but I can't help but think did I cause all of these people to view Autumn's autism as "bad thing" with my writing and words? Have I too contributed to the mass hysteria surrounding "finding a cure" just like certain organizations? I just really hope that my message sat with friends and family that I love my daughter and I don't mind or care that she has autism. That when we walked into that doctors office on Tuesday, I wasn't looking for a cure, for a way to eliminate autism out of my child, but for any extra tips to help ME better learn "her language", to also navigate through her world, etc.

I say this from the bottom of my heart that I'm so proud of Autumn. She's an amazing child and has changed my life in so many positive ways. It hasn't been easy to say the least. I've had to put certain things on hold to make sure Autumn received the time and attention she needed (still needs) to flourish. When I started my blog about a year ago, it was to document progress, growth. It was to share my struggles that came with being a parent to a child with special needs, but it was also to show my growth as well as a parent. 

We're changing. Each and every day. Regardless of what one person said, what others may think, what the future may hold, I'm going to enjoy this time, these small moments now with my beloved daughter, who, autistic or not, is my heart and soul. She IS my angel on earth and I thank god every single day for allowing me to be HER mother. 

Onto the next year!

Xoxo,

Trish 

When Everything Changes

There's always a point in one's world when they wake up and realize they're not in Kansas anymore and that they haven't been for as long as they can remember. 

Maybe it's been within me all along and has taken me this long to accept it or maybe it has been the influence of my little butterfly muse to help me reach this moment, but here I go with my words.

All of my life, I have always been different. I never cared to socialize with my siblings or even form long-lasting friendships with others. It was always a challenge for me to keep friends, let alone make friends and those who have stayed by my side are the lucky few. I preferred to be a loner and do my own thing and not "conform" to social norms/rules. Yet, people who have met me would think opposite. I can be extremely social when the setting fits. I've learned this self-adaptive skill in order to make my way through life and it's worked. 

Very much like Dexter (minus the serial killer aspect), I'm apathetic to a lot of things. I'm able to be a great therapist because I don't and never get attached to my families. It's a skill I've always had, yet I show empathy and understanding in the moment.

As a child, I would stim and rock and could memorize lyrics to a song after just hearing it for the first time. I read at a junior high school level by the time I was six years old. I was obsessed with school and learning and never needed parental guidance because I always knew more. A little Einstein was defintely something someone would've called me when I was in the second grade. I was going places and boy did I go...

So why am I sharing all of this? Because the more I become fluent in my daughter's language, the more connections I am making to my own life and childhood and why I am the way I am. How I've always struggled to get close to family and let my walls down. How I'm so honest, was/is horrible at lying, and wore my emotions on my face because I didn't know how to "fake it". After years of practice and a few psych degrees later, now I know, but it's still a struggle within. 

So back to my daughter. I'm realizing that she is so much like me. Maybe not within her spoken language, but her personality mirrors mine and I worry for her. I worry about her future and being judged and ridiculed because she's an autistic female. Her male classmates already have the upper hand. They will have each other, but will they be there for my dear Autumn? I pray each day that she will have "her village" and sure online here she does. Right now at school she does, but will she when she's 13? Who will be there for her then? I sure as hell plan on being there, but I know that "mom" won't be enough...heck, it wasn't for me growing up and I'm blessed with the most loving and affectionate mother out there, which brings me to my next point. 

When I started this journey, I wrote a lot about my own self-pity and had this "poor me" complex. I've grown immensely within the past year and no longer see Autumn's autism as the enemy, but the guiding light that will help navigate me into her world. I'm also not saying I'm autistic by any means, but it's connection does makes a lot of sense.   It's taken me thirty plus years to embrace myself, to accept the things I cannot control, and to love unconditionally those who deserve my love in return. Luckily, I found someone similar to me who counter balances my "I'm a bird I want to fly far far away from here".  I thank God every day for blessing me with him because he is my rock, the love of my life, and the fact that the two of us truly accept one another for all that we are and see the capabilities we have within, it's the best feeling in the world. I say to myself that if all of the struggles I had to endure during my childhood, the pain and rejections I faced was to lead me to not only my soulmate, but to our daughter, well it's been worth it times a million. 

Thus, ladies and gentlemen, I've decided that I'm going to be taking a different approach to "Raising a Butterfly" by still sharing Autumn's journey, but more along the lines of acceptance and advocacy. I still have so much to learn about parenthood and autism in general and I'm sure I will continue to complain here and there about the trials of being a mom, but that's parenting overall. 

I know that most have come here to relate to our story, to my words, as were in this journey together, but when I say this, I mean this: we ARE in this together and "this together" shouldn't be programmed as some sort of tragedy. It's not a bad thing that our kids are considered "different".  We need to each learn to embrace our children for who they truly are and not how they should be. As I said the other week, why have our children and ourselves conform to a world that's full of "quiet hands" and "look at me's"? Why take away what makes each of us unique? I'm done promoting such a thing. I know that I've contributed to the negativity surrounding autism by some of my self-centered, poor me posts. I've promoted organizations like Autism Speaks that preaches for "a cure", when I know there's never going to be a "one-size-fits-all" cure. I've reached this point where I'm choosing to not focus so much on the milestones and getting my daughter to stop scripting or perseverating on words, or stressing anymore about her sensory input. I will help her regulate and support her voice, but I don't want nor plan on changing her.  Frankly, I don't care anymore about what "society" wants from my daughter. She's perfect to me and I never want her to stop spinning, squeezing and loving me. I've officially embraced all of her and there's no turning back now.

Thus, in the coming weeks I will be asking questions and posting about "females and autism" as I want to learn all I can about the minority population within club spectrum (nothing against our males on the spectrum). I hope that this will help me better understand my daughter and how I can help promote a world best suited for her needs. Again, all about embracing as the more we accept, the more we love. 

Xoxo,

Trish 

PS, I leave with this sweet Vday card that I made my husband. We call ourselves "penguins" bc penguins are known to mate for life. We are huge Christina Perry fans. Autumn is as well. She freezes in her tracks when Christina come on and will sing along to the music. Thus, the  lyrics below/included are to her song titled "Penguin", how appropriate. ❤️

My Wide-Angle Lens

Happy New Year all. Maybe I'm still in the honeymoon phase or just high from all of these exercise endorphins (yes I'm sticking to my treadmill goals I had previously mentioned), but I feel physically and mentally healthier as of lately. I've been able to see my life clearer and gain control over the fears that once took over my mindset. Call me cynical, but it's finally becoming apparent that this life of raising a daughter with special needs isn't all that bad. 

Now this is where I may sound a little indifferent, spiritual, crazy, whatever people may call it, but I often wonder if my daughter being autistic is to protect us from something greater down the road in life. Meaning, because my daughter is autistic, the chances of her struggling with addictions, teenage drama, and so forth may be limited. Or maybe that's my wishful thinking, turning autism into something granidose when in reality, autism can be a huge struggle for many families out there. Thus, I'm not trying to glamourize autism. I'm just trying to understand it more, learn it's language as it applies to my daughter, and see it as something special rather than some sort of tragedy.  

Over the past few weeks, I've leared how wrong it's been to portray autism in general as being the wrongdoer in my and my daughter's life. Something I've played my personal fiddle to time and time again. Making excuses and crying the blues like "poor me, my life sucks" when in all actuality, I'm pretty darn lucky. Some of the things that make my daughter incredibly resilient and brilliant is due to her autism and not just because of her strong personality. 

Even though it may be a struggle for her and for me to understand her at times, and I'm certain the struggle isn't over yet,  I'm learning to become fluent in her language. I'm learning how to communicate and bond the best way Autumn knows how. I've adapted to her little world. Because of the above choices, she's allowing me into her circle during play. She tells me or shows me when she needs to regulate her sensory system or when she's feeling overwhelmed. The biggest challenge has been keeping my voice low and being patient with her when she wants to try to do something herself. I'm seeing that despite a label given to her by all of us (myself included), she's unstoppable. Autumn has already developed such motivation and a love for learning, being around other people and wanting to explore her world that at first, I was afraid to let her go, but now, I sit back and watch her flutter her wings. 

Isn't that the purpose of this journey? To have Autumn fly as high or as low as she chooses regardless of what the "experts, progress notes, and IEPs" say? In Autumn's world, I'm seeing that she has no limits. She doesn't see them like maybe we would. The rejections and the harsh judgments of society drowned in fear that holds many of us back hasn't gotten the best of my sweet girl. She doesn't view her world through a small picture frame but with a wide-angle lens seeing limitless horizons full of potential. So I've decided to do the same. 

I end with this tidbit. Recently we went to a play place where there was another little girl there that Autumn wanted to play with. The little girl wasn't interested in all of Autumn's jumping joy glory so she didn't want to play after Autumn tried to attempt socialization. Now maybe other NT little girls would've been hurt by this rejection. Well not my girl. She moved on quickly that eventually this little girl wanted to play with Autumn. By then, Autumn could care less at that point. She was already happily engaged into her Lego building/pretend cooking that she didn't notice the girl longing to play with her. She had moved on. She didn't let the initial rejection get the best of her or ruin her fun. Now that's a trait I'm sure many of us wished we possessed. Is it because of autism or not? Who knows...

Wide-angle lens all. The wide-angle lens.

Let's look through them like our butterfly  kids do. Like Autumn does on a daily. May that be a part of your New Years resolutions for 2015: any view can be limitless if you just look beyond your boundaries. 

Xoxo,

Trish 

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. 

Xoxo,

Trish 

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 

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". 

Xoxo,

Trish 

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!

Xoxo,

Trish