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. 

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 

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". 

Xoxo,

Trish 


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!



Xoxo,

Trish 


Friday, November 21, 2014

Back-Off

Last night was my very first parent-teacher conference at Belle's school. I walked in and her teacher was patiently waiting with a big smile on her face. I really like her. She's the epitome of what a pre-k and elementary school teacher should become. I'm going to miss her bc she's not technically Autumn's classroom teacher for the year; she's been the replacement teacher until Autumn's teacher comes back from maternity leave. Overall, she's done an exceptional job with my daughter. 

With that being said, I'm going to focus right now on the positive highlights of our meeting. The moment that I was brought to tears listening to how special my daughter is to her teacher and aides and how they truly love and adore my little girl. It makes leaving her a little easier knowing she's in excellent hands. Would I be saying the same if Belle wasn't in "Special Ed" ? I don't know. We discussed Autumn's progression and how far she's come since the beginning of the school year. The teacher listened to my woes and how difficult it's been to let her go. She responded to my concerns with such compassion. I couldn't be more grateful for her words. 

Now onto the "negative" part of the meeting: the topic of "full day" came up again. Apparently Autumn isn't progressing as fast as they "like to see". She's moving forward, but not up to "their expectations". Well more like not up to the BCBA expectations. I'm not going to lie, it pissed me off hearing this again. Since I have a good relationship with her teacher, my frankness came pouring out like tears. I informed her that we have her in outside therapies four times a week and despite her not being at school, we do lunch and out the door again for therapy. Are days are full. Plus, she LOVES her therapists and looks forward to going to see them. I also said this and rightfully, she agreed:
"Imagine having to leave your house at 8:30am not to return until 4pm at the ripe age of three?" That's a long day for an adult or any typically developing child, so why this for a "special needs" child? 

I went on and on about the appropriate use of ABA within our home, how I pick the activities she'll enjoy and that she leads me; I don't push and push and push her over the threshold because I don't want her love for something, such as learning, be jaded. I informed her teacher that Autumn loves school and her therapies and perhaps she could handle the full day, I just don't want that experience to take away from the joys of school that she has developed at this point within her life. 

Lastly, I love being home and present for my daughter. It has been quite the adjustment to leave her and go work with my little kids for the few hours I do. I miss her and look forward to picking her up daily and spending our afternoons together, whether within her therapy sessions and when were home. The past three years have flown by and I hate this so much. I hate that my baby is growing too fast for my liking. I hate that she's already at an elementary school doing things that my friends kindergarteners are doing. I hate that I feel like the past 18 months have been consumed with therapies and doctors appointments and ELAPs to IEPs. This wasn't the life I had imagined for my little family, especially for her. I hate that there's so much pressure on her and that I've been the biggest contributor to this "push" to "normalize her. How freaking selfish is that? I think about this pressure and if it's bad for her, how much more would be "expected" if she was NT? I think to myself how we put so much strain onto all of our children and we wonder why screwed up shit occurs. We wonder why half of Americans are on meds for physical and mental stress. We wonder why therapists like myself will NEVER be out of business because of these expectations that we choose to put within this heirachal latter, that "becoming someone important"  is more valuable than kindness. That a career "defines us" rather than our life choices and "what we do" to make a life for ourselves is seen as ideal, even if it means hurting those to climb up that "latter of success". 

Often I ask myself, what the heck is so wrong that she's "different"? What's so horrible about autism that people fear it, stigmatize it, and feel awful about talking about autism like it's the huge elephant in the room? That it's something shameful and should be kept away from the world. That there are idiots out there who choose to not of have their children vaccinated because of "fears of autism"? How effed up does that sound when autism is now being thrown into a life-threatening disease pile or seen as "cancer". This angers me so much can't even go there anymore. Granted, I know that autism can be very draining and hinder families, but there's something beautiful about my daughter's autism. Hers and hers alone. 

Maybe the above is just my ploy of feeling a little burned out from hearing the same ole "she needs to do more" mantra. Or maybe I just don't want her to change certain aspects about herself that make her special and unique that her autism has caused. That innocence and love for all things that I know this cruel world would've and will ruin for her if she becomes "typically developing" like it did for the rest of us. Then again, I don't want her to be blinded from reality as well. This will be the balancing act that I'm sure well work through as she gets older.

Overall, I'm honored that her school sees so much potential within my daughter. That she's been their little "project" of what successful tools utilized at such an early age can do for a child on the spectrum, but stop with the constant push. Stop it. I would be speaking the same tone if she wasn't on the spectrum. Kids need to be kids and parents need to be parents and enjoy phases of life together as life is too precious and short. Plus, at the end of the day she's three. Yes I know, I say this often as if it's my crutch, but it's the truth. Like my husband stated last night, "what's next, she'll have to memorize the Greek alphabet at four?". Because from the looks at what they want her to do, even most typically developing kids aren't expected to do those things "eighty percent of the time". Like the tortoise, she may be moving slow, but she will get there. She WILL. I've seen it and continue to see it and believe it. 

Thus, the teacher appreciated my words. I told her that I will be in contact with the BCBA and school psychologist informing them to stop pushing the full day onto us right now. Maybe next year, but it isn't happening this year. Done and done. I hope they respect my wishes otherwise, in my husbands words, she'll be pulled out if they don't stop with their "unrealistic expectations". 

I know that her language sucks compared to her peers, but it was only a short 16 months ago that it took her over 45 minutes to say the word "milk" after working and working with her and having our "break through". That this time last year she finally started to acknowledge Leah, that six months ago, her daddy and her truly started to bond over Frozen and popcorn, that her language has "blown up" to the point that she no longer needs pecs to assist. That her sensory system is much more regulated that shopping with her has become easier, that she greets everyone and looks right at people, etc.,. The list goes on and on. Things we've been working with her on for a long time. So feeling like we've been discredited is an understatement, which explains my emotions throughout this post. And it hurts. Period. But I know that I have the power to choose how I feel and I won't feel discredited or "less" bc my daughter isn't doing things on their terms. I know she's worked hard and I couldn't be prouder of my Belle. Here's to climbing this mountain together. All of us, together. 

Okay, I think I'm done for now. Happy Friday all.

Xoxo,

Trish 

Picture of Autumn using Leah as a car ramp/track...cleaver cleaver...hehe 

Wednesday, October 8, 2014

Leah, Our "Keeper"

"As I walked into the door, there she was, sitting on the steps in our first home in all of her glory, excited to see her "mama" for the first time in several days. I sat on the stairs next to her, embracing her, while the tears streamed down my face. Just like the movie, these words were said, "in a few minutes, your life is about to change. Your sister will be coming through that door." Her daddy walked in, holding the car seat as the tears overwhelmed his eyes when he greeted his girl with a new surprise: the baby. Inquisitive she was while looking at this new life, not sure what to make of this, but even, within those first moments, she was hers. She was always meant to be hers." (The first time Leah met Autumn)

Five years ago to the day, my life forever changed. It was the day we adopted our rescue Labrador Retriever mix Leah. I so desperately wanted to be a mom but knew my husband wasn't ready so instead of a baby, he gave me the go-ahead to adopt a dog. I searched for days for the perfect dog and knew what I wanted: a young female puppy that had to be some sort of retriever mix. Oh boy did I get more. 

When she first came to us, she smothered me with kisses and then went right into the kitchen, which is where she's never left. Training her had it's difficulties, granted she WAS a puppy after all, but we got through those tough days together. Not only did Leah become my companion, she helped me overcome my depression with her constant love, she got me into better shape with our daily walks, she kept me motivated to continue moving forward when I wanted to give up while attend grad school with that look in her eyes, and most of all, she brought the fun back into my life with our games of "ball" and dancing to christmas music. She filled many lonely days with love, laughter, and sometimes irritability because she loved chewing on my clothes. Aside from my husband, I had another "best friend" within my life. 

But things got even better. Fast-forward to after Autumn's arrival and the years that have since followed. We were so nervous as to how Leah would be when Autumn was born. We even took a dog class to help introduce the pup to her sister and felt ashamed for ever doubting her.  As we all know, Belle was diagnosed with Autism after she turned two and despite some of the hurdles she's had to go through, Leah has always been by her side and has loved her from day one. There's no doubt about it. The two of them have been inseparable, for better or worse, in sickness and in health, Leah's ALWAYS been right by Belle'side. Even though it's taken Autumn some time to "warm" up to her, she too loves her "sissy" more than anything. I can see it within her eyes, in both of their eyes, when we play outside or in her room, it's like magic.

As we celebrate five years of becoming a family, I can't help but think how precious time and life can be and how lucky we are to have this beautiful creature, who has captured our hearts, but most importantly hers, within our lives. I'm also reminded that there will come a time when we will have to say goodbye to our "first born", her "sissy" and "our keeper" and how on earth will we be able to get through that? How will Belle cope with this and how unfair it seems to be that our pets are not meant to outlive their owners. It just seems so cruel and breaks my heart at the mere thought of loosing Leah someday. 

I know I can't focus on the latter, but I will say that having adopted Leah, she's  taught me how to become a mother. She taught me how to love unconditionally and to try to see the good in everyone. She's taught me to give second chances to those who deserve them, to follow my instincts, and to also kick the grass behind me when when life seems to be full of crap. The best though, is she's allowed me to see what it's like to be forever patient, kind, enduring, selfless and always there supporting those who need love without muttering any words. That silence can be golden and a hug or a dog'a kiss goes a long way.

I know within my heart that there will never be another dog quite like Leah. She's been one of the best things that's happened to our family and for Autumn without a doubt. She's the perfect "therapy dog" (if you want to call her that) for myself, my husband and for Belle. Who can ask for anything better? How lucky we are to receive such love within our lives? How amazing is it that an animal, this four-legged enigma, can bring such happiness that I never thought existed?! Words cannot express my gratitude for you my "sweet Lee". Just like our song: "When somebody loved me, everything was beautiful, Every hour we spent together, lives within my heart
And when she was sad, I was there to dry her tears, And when she was happy, so was I, when she loved me." (Except I still love you and never will stop loving you.)

Xoxo,

Trish 

Here are some of my favorite pictures of Leah, "our keeper" and the best darn companion, a family could ever ask for!
(Leah on the beach for the first time)

(Daddy snuggles)

(My favorite picture of us)

(my girls)

(And there she is, Our sweet Leah girl)



Thursday, October 2, 2014

The Day I Stopped Giving a S***

Diagnosis day, or what us butterfly parents refer to as "D-Day", was the day I stopped caring and giving a shit about the one thing that most moms have dealt with in some form or another: the mommy wars. Oh yes, you all know what I'm referring towards. Those endless debates about how a mom chooses to raise her family and the cycle of narcissism that stims from these so-called "friendly debates" because we all know that "our way is the BEST way and screw everyone else".

I admit, I was one of "those moms", feeling like I had to "defend" certain topics in hopes that someone would approve of my parenting style and reassure me that I got this, "raising a child" thing down. When all in all, I didn't need anyone else's approval or support to tell me I was doing a good job, except maybe my husband. 

Thus, I happily raised my white flag in victor the day that my daughter received her autism diagnosis because everything up to that day no longer mattered. None of that petty shit was on my "defend list" anymore because I realized in those moments that there will be bigger battles ahead that will have nothing to do with what transpired within the first year or two of Belle's life. I had no choice, but to become stronger and resilient in many areas of life as a mother and a person in order to move forward for Autumn's sake. 

Also, when it comes down to it, I realized that no one really gives a crap as to how you "parent" your child, except your child. Who knows, perhaps in twenty-five years they'll be blaming you as to why their life turned out the way it did and I guarantee they will not complain about whether you "nursed them enough" or if they wore "cloth diapers" (unless they're bloody face from AHS-serious fan here- then maybe they will, joking!, insert LOL). Or maybe they'll be in college, living at home, on their own, married, kids of their own, etc., the opportunities are endless here. Regardless of where our children may be in the future, they'll STILL need our love and support and honestly, that's all that they will care about once they become adults themselves (scary bittersweet thought). Just like most of us "may" still need our parent/parents in our lives for emotional support. The cycle will continue.  

Having a special needs child diagnosed with autism changed my mindset, my focus, and helped me realize that there are so many more important things worth my time. I grew up a lot on her "D-day" and that feeling has been humbling. However, I feel that if we do decide to give it another go in the future, I'll be prepared, more confident in my choices as a parent, and won't need an "audience of approval".  Since having my first being a "butterfly", well, it makes this parenting road a little more interesting and unpredictable, but I've learned that's parenting in general. 

Thus, my journey isn't "greater" or "more difficult" than other parents and our opinions most likely differ, but if it's one thing we all can agree upon is that we love our children more than we'd ever thought possible. So for any new/soon-to-be parents out there, my best advice is, none. This is YOUR journey to take, your story to tell. It's not my place or position to say anything indifferent. In time, you may learn to take it all in stride and to not waste your time defending what "you do" as a parent. It took my daughter's diagnosis confirmation for me to realize the above. 

However, I will say this one thing and this goes for all parents out there: You ARE the expert on your child. No textbook will give you the answers. That's 100% the truth. Remember that! 

Xoxo,

Trish 

(This post was inspired by seeing all of these "mommy debate" blog posts throughout my news feeds. Below is a picture of Belle and me when she was ten days old. See the tired look in my eyes/face. She was also crying in this picture. Adjusting to the "newness" of motherhood/babyhood together.) 


Tuesday, September 23, 2014

You're Invited

Ahh what a terrific Tuesday. Yes it's been a good one so far marking the first official day of Fall (my favorite season). There's nothing better than pumpkin coffee from dunkin donuts (I'm a dunkin girl), crisp leaves scattered throughout the yard and sweaters to hide my arm fat. Ahhh Tis the season. 

My cold is gone and I feel 100% better. My body is finally getting adjusted to our new schedule and after last weekend's bitch post, I feel relieved to admit my faults and start putting things into perspective. Also, having a well-known blogger promote my Facebook page and blog was the icing on the cake. I had no idea he even knew I existed so "taken back" is an understatement. With that being said, I feel blessed having so many new followers and I'm certain that my writing won't disappoint as THIS is more than "therapeutic"; writing IS my passion. I too got that from my momma! So thank you and welcome. 

Anywho, my previous blogpost inspired many long conversations with the hubs over the past weekend. If there's one thing that we enjoy doing is talking to one another. We both came to some conclusions on things that've been troubling us and decided that we are going to try to make more time for each other after belle goes to bed. Sometimes I forget that I do have a partner in this all and often times, I just assume he knows what he's doing as a husband and father, thus "expecting him to know what I want and need" as well. I've realized that if I need something from him, I have to ask for it and not just "expect him to know." He's not a mind reader and it's only taken me about 12 years to figure this one out. 

Among our conversations, Autumn was a hot topic. We started to discuss how she's been doing at school and within her therapies and how she just seems  happier overall due to the new routine and structures set in place. Things seem to be going great for her. Finally it feels like were making some breakthroughs, but then a topic came up that had us both going a mile a minute. Birthday parties and other public "typical" family outings.

We're the first to admit that we're NOT "social people", meaning we avoid huge crowds and events like a plague. Even before Autumn, we were the type of couple who preferred matinees, dinners at restaurants by 5pm, and going on vacation in the off-seasons. So now here we are, parents, which as parents alone, taking their child to any sort of social function can feel like a chore, add the sensory issues and communication barriers and we have a recipe full of unpredictable chaos. Due to trying in the past to introduce belle to social events like zoos, play classes, birthday parties and then everything going bonkers, we've been declining those "you're invited" invitations from family and friends and have chosen to wait a bit to reintroduce her to the social world that caters to NT people because of many different reasons, but this one may have others reeling...and here I go.

(God please forgive me for even saying what I'm about to say, but this is being real and true and if you judge me for my words, that's on you.) 

So why do we not like taking Autumn to many "social places" or to birthday parties? It's truly not the constant work or anticipation of what may transpire (and believe me, it's constant work bc she doesn't stop). It's not because were lazy or just don't feel up to it (bc were not). The main reason is because going to these events is a constant reminder of what we were so close to having, but don't. It's the bittersweetness of observing what "might have been" say Autumn wasn't born "different". It's a constant reminder of Autism. Yes, Autism because as much as belle might look "typical", her behaviors are not, which make her stand out like a sore thumb. 

I know I sound like an ungrateful ahole for saying the above because we love our daughter and feel blessed that she's uniquely ours, but were still struggling within this area of our lives of accepting that the "what might've been" isn't and that's okay (yes, the hubs feels this way too). Things like going to the movies, carnivals, petting zoos and other functions just seem impossible at this point and that, my friends, is called disappointment. Sure, some may be thinking, "who gives a crap about her behaviors or the autism and what you "might of had", go and make memories!" and yes, those of you who believe this are correct within your thoughts. However, until we both, and I say both here, accept that the "what might've been" is now "what is" to the fullest, we will continue to avoid the crowds for the sake of our parenthood sanity and Autumn going into "sensory overload" bc 95% of the time, she still does anytime we do something "unfamiliar" to her daily routine (the 5% is the beach bc that's the only place she truly loves going). Plus, Autumn does better in smaller social settings anyways and to be honest, she's still too young to truly enjoy a movie or appreciate the sweetness of cotton candy or the cuteness of a baby goat. 

Right now, doing the above wouldn't be cherished as it should. I want our family memories to mean something to us and if that means going places when were the only ones there, I'll take it! I'm sure that with time, the above feelings will decrease as she ages and continues to become her own person and as we continue to become thick skinned and "parent pros". 

Until then, I'll enjoy the serenity of my home surroundings as belle sits snuggly next to me, wanting me to read "goodnight moon" for the twentieth time today. 

As always...xoxo,

Trish 


My sweet girl sitting contently inside her block basket, chewing on one of her favorite books while watching Wheel of Fortune (our nightly routine minus the popcorn). 

Saturday, September 20, 2014

I Should've Listened To My Mother

Hey all. Here's to Saturday and another 5am wake up in this household. What a great way to start the weekend (said no morning person ever). 

Lately, my emotions have been all over the place. The novelty of Autumn and her being in school is wearing off and the reality behind her schools and additional therapies hit me hard last night to the point that I went to bed crying, wishing this wasn't our life. I rarely cry regarding the autism, but the events of the day and past week just struck a chord with me that I had to get those musty tears out. My poor husband knew something was up as he went in to check on me and I just lost it. 

The past few weeks have been difficult on me in various of ways. The routine is something we haven't had to truly deal with ever and adjusting to that plus me working in between while Autumn attends school has also been hard. It's not like I go and that's it. I have phonecalls and the paperwork that is imperative for me to do my job well. It's not an impromptu, go into a home and pull some magic out of my bag. It takes planning and lots of it. 

I wish I would've listened to my mother and took it easy until Autumn was truly established into her new routine, but nope. She's always right and I'm realizing this now. That's what I love about my mom. She knows me so well and what I need to do for myself to be healthy and she knows that I take on too much too soon and it would cause me to feel exhausted, overwhelmed and angry at the world bc of feeling like I have to appease everyone around me.

"Can you take on these families?" 
Me: Sure! I'll take on these cases.
"Home improvements this week?"
Me: Umm okay...even though I don't know when I'll be able to help
"Can you go to xyz for me Hun?" Me:Anything for you dear, let me squeeze it in between her therapies and school time.
"Can Autumn come at this time bc of..."
Me: sure, I'll accommodate

I need to start staying No.

No, I can't take on all of these cases.
No, I can't do home improvements on the house.
No, I can't go to xyz.
No, we can't do this time this week.

Done and done. No more because. People need to learn to respect my "no" when I say no and because I have trouble doing so, I need to start because it's caused those to not truly respect my wishes even after I've expressed my concerns.

So take the above, plus Autumn being in school, and my reservations still regarding her starting school so young, her new morning wakeups (oh how I miss the days of getting up at 7am) and this cold that just won't go away, I'm mentally and physically shot and have had it with not getting the help I need in order to be the best parent I can be to Autumn.

I really feel like I've been a shit mom as of late bc I'm loosing my patience with her bc of the above and it's not her fault. None of this is and that's what really hurts. I cried wishing she didn't have to go through this all. She has, ready, 10, yes 10 different teachers and therapists that she works with on a daily. Add in the BCBA and her doctors and this number goes up. Ten people that I have to also be in constant communication with. Ten individuals who now have the distinct pleasure of working with my daughter, but ten people I would've  preferred my daughter to never having to work with three years ago when she was a baby.

I cried because I feel worn down and alone as everything regarding Autumn falls straight onto my shoulders and people wonder why I don't want another baby! I don't think I would care so much if Autumn was NT but she's not and requires much more support than most children and when it's constantly on you, yeah, it can wear you down and it can break you. 

Autism is breaking me here and if this isn't a cry for help or at least respect when I say no or to wait to do something when I can mentally and physically prepare for it, then I don't know what is. 

Thanks for reading. Carry on.

Xoxo,

Trish 







Monday, September 15, 2014

The First Week

We survived...barely myself, but she did. Autumn adjusted exceptionally well considering how she has a difficult time transitioning. I, on the other hand, have been exhausted from the "up before thy roosters" alarm clock (belle) and running around all last week. The stress and change of seasons finally caught up to me this past weekend as I had a cold and am still recovering. Ugh. I've been feeling like a zombie most days that my mantra has been "I need coffee NOW" all day long. It hasn't really helped. I also saw my first family working for EI. All went well. I never realized how difficult it can be to keep the family interested and the child engaged, even with a giant bag full of goodies. Hoping I'll get my groove eventually as time progresses.

Okay, back to Autumn now. The question of the week I've been asked on numerous occasions is "how does Autumn like school?" To be honest, I don't know. The only form of knowing how her day went is within her daily communication log, which only consists of a two-sentence update. I'm going to assume okay since I haven't received any phone calls or emails stating otherwise. They did call me on the first day to let me know how she did, which was nice. Also, I'm learning that as much as I was saddened by belle starting school early, it goes by so fast! She's there for only two and a half hours. So by the time I drop her off and go back home or go to meet one of my families for work, I only have two hours and those two hours fly by faster than a "rocketship, rocketship to the moon". 

Sometimes I think to myself, "maybe the full day wouldn't have been so bad" but then I realize how LONG the full day is (she wouldn't get home until 4pm) and when would we have the time to be able to fit in her private speech and OT sessions. Plus, she's only three. The full days of school will arrive at some point within our lives.  She now has OT and speech twice a week privately on top of receiving services while at school (4x ST, 4x OT). It sounds like a lot, but this is what she has to do now in order to continue moving forward. 

Also, the highlight of my week was having some coffee with a dear friend of mine who's been such a support system and understands what I've been going through with Autumn. We've watched our small children grow so she's known Autumn from day one. Throughout our chatter, I started to get emotional (something that happens often) when we spoke about Autumn's future. I keep having hope and faith that she will continue to progress and perhaps someday, maybe, she'll be able to tell me how her day at school went aside from a "well" or a "good" response, which she's not doing yet. However, she will say "purple cat" though on our drive home which has me convinced that she's seeing that damn cat from Alice in Wonderland in the trees. Go figure lol. 

In addition, this past week has also been a test for me to not get sucked up into the "autism vortex", which can easily subdue me if I start comparing other children in similar age to my Autumn or focus on the negative aspects of autism,which there could be plenty. For me, it's been more like a quick, "I wonder what she'd be like if she was doing xyz..." thought, but it's short lived and my brief woes are overtaken by gratefulness and love. I've been learning to remove those expectations and trying my best to not focus so much on the "what ifs" but on the "what is". 

"What is" thy may wonder? Well what is, is:  A little girl whose mostly happy all of the time. In fact, she rarely cries only when she's in a sensory meltdown or happens to come across the "Empire today" commercials (she hates them for some reason). That's something I hear often from family and friends. "She's such a happy child". Yeah she is, she really is. Despite the fact that she's considered "different" according to societal standards, she's happy and content and honestly, that's all that matters in the life of a growing child. It's what us parents strive to provide for our kids: happiness. Autumn may not be like most of her peers and as much as I've struggled with the fact that she may never be and that her autism is real, I'm slowly becoming content as well with this new life of ours.  I feel like because my attitude regarding life in general has improved, I've also been able to heal and "let go" in ways I never imagined. It's also kept the fears and anxieties at bay and that my friends, is always a plus in life!

So I leave with this sweet image. Last night Autumn climbed into our bed around 1:30. I always hear her get up and greet her when she comes into our bedroom. I don't mind it bc we coslept for 27 months exclusively.  As she got in her position, her little arms wrapped around my head and my arm wrapped around her body, I look up and see her eyes closed but with a sweet grin on her face. She was smiling. She usually does this every time she wakes up in our bed and goes to sleep at night. It's in these moments when I realize she's truly happy and wish to savor this moment for a lifetime. I believe it's because she's surrounded by so much love and that despite my worries as a mother, I must be doing something right. 

Content = Happiness= Love 

Life is good.

Continuing to "embrace the amazing"

Xoxo,

Trish 


(belle enjoying some iPad time and staying in one app thanks to Autism daddy's tutorial-thank you!!! She looks pretty darn happy to me!)

Monday, September 1, 2014

Dear Teachers

Since my Belle isn't able to vocally express her thoughts just yet, I decided to pen a letter on her behalf for her new teachers so that they can have a better understanding of whom Autumn is, her likes, dislikes, her strengths, and areas of focus rather than relying on just her IEP. This is all beginning to feel real. I really want to tell her new teachers that being able to work/care for Autumn is a blessing, a privilege and to guard her with your lives otherwise this Mama Bear will be roaring if something happens to her cub, but I can't come across too overbearing for now. Still, I can't help be a bit worried and nervous as I'm so protective over my Belle. I will give them the benefit and see how things transpires. I'm certain that she'll be in good hands.

Okay so here's Autumn's letter, with the attached pictures included.



"Dear Teachers,


Hello, my name is Autumn. I wanted to share some things about myself that may help us all begin the new school year off in the right direction. I just celebrated my third birthday this past July. Of course I had to have a Frozen themed birthday party because I’m obsessed with Elsa and everything Frozen. In addition, I spent a lot of time at my Mema’s (grandma) shore house this summer. I absolutely LOVE the beach, ocean and the sand. It is definitely my “happy place”. When I wasn’t at the shore, I was home swimming in my pool. I learned how to swim with my swimmer’s vest on. Mommy and daddy are so proud of me for being able to swim on my own without much assistance. I also enjoyed spending a lot of time in my backyard running and playing outside. Did I mention how much I LOVE to run? Sometimes when I run, I’m not aware of my surroundings and the potential dangers so my parents have to keep a close eye on me at all times so that I’m safe.

My parents say that I’m extremely active, which is the truth. I love to move and am usually non-stop throughout my day. However, I enjoy routines and structure, but have a difficult time trying something new and dealing with transitions. Mommy says that my “meltdowns” last for only a few minutes as I’m able to quickly move onto something else as she doesn’t “give in”. Anyways, the highlight of my summer was that I was in my uncle’s wedding as one of the flower girls. My parents were worried that I would scream, but with Mema’s assistance, I was able to walk down the aisle as mommy and daddy were also in the wedding.


When I’m not always constantly on the go, I enjoy reading my books, coloring, listening to music, puzzles, jumping on my trampoline, playing with legos and my dolls, watching Mickey Mouse Clubhouse or Signing Time. I absolutely LOVE “Miss Rachel”, Alex and Leah of Signing Time. I also enjoy spending time with my “sissy” Leah. She’s my parent’s “first born”. She’s our Labrador Retriever Mix and just celebrated her birthday as well.

As you may already know, I was diagnosed with Autism Spectrum Disorder right after I turned two. My mommy made sure that I received early intervention therapies in speech, occupational and developmental intervention. I loved the time I spent with my therapists: Miss L, my DI, Miss M, my SLP and Miss L, my OT. I miss them so much, but hear that I may be working with Miss L again since she’s an OT at the school. Early intervention helped me immensely over the course of the fifteen-month period while I was receiving therapies. However, I’ve been told that I still have a difficult time sharing and taking turns. I admit that I don’t like to share my toys and know that I will need to continue working on this in order to make new friends and play well with others. In addition, I do love other children and admire them so much, but still have a difficult time verbally communicating with them. I’m hoping that as my expressive language improves, so will some of my social skills.

Moreover, I absolutely LOVE input, which is probably why I’m constantly on the go. My mommy has me in private OT so that I can continue working on my sensory areas. I enjoy deep pressure, squeezes and hugs, but there are times when I don’t. It depends on my mood. I also enjoy praise. That will be the key to keep me motivated. Lights and noises can also bother me (too bright and too loud), so please keep an eye out for this. My mommy has a hard time shopping with me because of the sights and sounds. I’m also particular to certain foods and would eat pasta and chicken every day if my parents allowed. My parents have me drinking only Almond milk, but I’m not allergic to anything if that helps. I’m also not potty trained yet, but mommy is working on this with me even though I don’t show much interest in trying.

I also keep hearing that once my body is regulated, my expressive and receptive language will increase. My mommy has worked really hard to establish a sensory diet, which includes brushing, in order for me to continue increasing my language and decreasing my negative behaviors (whatever they are haha). She has me in private speech as well. Currently, I’m labeling everything and repeating new words and phrases each day. I still need some prompts, but I’m getting there. I’m certain that I will LOVE going to school daily. This will be the first time I’ve ever been left with someone other than a family member. My parents are nervous, but I reassured them that I’m ready and I’ll be just fine.

Hopefully by now those of you whom have read my letter have a better understanding of who I am. If not, please contact my mommy, Patricia. Her iPhone is readily available so she will respond back to you almost immediately. I know it seems like my mommy does all of my caretaking, but my daddy helps too. He just works long hours at his jobs and mom has been home with me from day one.

Lastly, when I’m focused, I LOVE to learn. I already know the alphabet, how to count to twenty, all of my colors, shapes, animals, and those things that most kids my age know going into preschool. It’s having a reciprocal conversation that I still need to work on, as well as my attention, but I’m getting there. All I’m asking of you is for your patience, to be caring and sensitive to my needs, and I promise that I’ll do my best to offer the same in return.


Well that’s it for now. Thank you so much for reading this and getting to know me. You will find that I love to laugh and am genuinely a happy little girl with so much potential. I look forward to starting this new chapter within my life as well as learning and growing with each one of you.


Best Wishes and Salutations,


Autumn"



****Probably a little much, but hey, that's how we roll. Hopefully this will help her teachers recognize her wants/needs. I'm sure that I've forgotten things, but this is good for now.

Thanks for reading and Happy September/Labor Day!!! "Tis the season of the Autumn, fa la la la la la la la. Enjoy some pumpkin spice and cider fa la la la la la la la la..."

XOXO,

Trish


Tuesday, August 19, 2014

I'm Selfish

So this morning I started thinking about Autumn and how did my just-turned three year old get so big? How on earth is it possible that she's starting school in just two short weeks? When did my life start to slowly slip away from underneath my fingertips as we all know that going to school is one of the first steps towards our child's independence. And then I thought: No. I don't want her to go. I'm not ready to let go. 

I'm selfish. Yes I'm a selfish mom because I don't want my three year old to go to school just yet, even though everyone else keeps telling me it's "for the best", like I'm not enough for her. That's how I interpret it EVERY SINGLE TIME I hear the above and then the guilt and pity sets in, because I take it personally, yes I know I shouldn't, but it's hard not to as if this is a reflection on my parenting. I suppose if I didn't have a degree or training working with children, it wouldn't affect me so much, but it does, and I can't just make this go away, even though I'm trying really hard to make this go away. 

Having a child with Autism means going down different paths than expected. For us here it's having Autumn begin school sooner than either of us wanted (yes my husband isn't ready too). It means sending our child on the same day, starting the same time, and attending the same amount of days as kindergarteners whom are five and their parents and caregivers probably got two extra years to prepare for this day. The thought of sending their "babies" at three was never an option, only maybe for a day or two just for social interaction, which would've been my plan if Autumn was "neurotypical". 

Sure, it may sound like bliss: having three precious hours to myself to do whatever I please, but maybe I enjoy being with my daughter? Maybe I don't want that break five days a week? Maybe I just love being her mom, even during the shitty times. I don't understand why some find this shocking to believe. I've said this time and time over again, our kids are so small for only a fraction of our lives then they belong to the world and us parents are left here waving at them as they step onto their ship called life. It happens way too soon and fast so yes, call me selfish for wanting to hold onto her as long as possible before that ship sails and then shows her the harsh realities of life like it did for the rest of us.

So while I reflect and wish I could hold onto her longer, I will send her despite how I feel. It's the right thing to do right? That's what I keep hearing so it has to be, but it's painful nonetheless. 

Lastly, I'm entitled to how I feel. I get that people just want to help me by saying all will work out and things will be great, but please don't. My feelings are not to be pacified. I don't need to justify my words. Being a mom is tough enough, add the autism to the ingredients and it makes for a lot of tears too soon. Yes tears bc again, if she wasn't autistic, this wouldn't have been the path we would've taken. 

I know I'm not the first mom to send their kid off to school. I know that every single parent has felt what I'm currently feeling, but this isn't about them or you, this is about me right now and again, I don't need to justify my thoughts. 

I hope those of you understand how I'm feeling and "get it". Please send your virtual hugs today as I need them. I'm glad I got this post out of the way now rather than in two weeks when she starts. Also, I KNOW Autumn will love school, I sure did when I was five. Heck I remember my first day of kindergarten like it was yesterday running up to my kindergarten teacher and giving her a big hug. Autumn may be fine, heck I'm sure she will be, but I won't. I will cry and pout and miss her like crazy. It's going to take me some time and again, I hope that everyone reading this can respect my feelings. 

Thanks again for reading. 

Xoxo,

Trish 

Up at paradise mountain in Sussex yesterday 

Tuesday, July 29, 2014

A Husband's Revelation

The last time I wrote I was upset over the subjective reports from Autumn's new SLP at the clinic. I had some words, released a lot of steam, and have since moved on. I understand that I'm going to come across all different sorts of individuals who will have their "expert opinions" and whom I will question from time to time. No big deal right? Gotta keep advocating for Autumn correct? Correct. 

So this past weekend (Friday-Sunday), we went back down to the shorehouse.  The weather, wind, and water conditions made it the perfect beach day. Long story short, Autumn had a blast. She was in her glory. She barely sat still from the time we got onto the beach until we left. In these moments, she was perfect. No limitations, no worries, no autism, just her being a sweet three year old enjoying the moment. As a parent, there truly isn't any words to describe my feelings in those moments. I kept saying to myself that with the input of the sand and water, this is the "best" OT session for her. No wonder she's in love with the ocean and sand! I also kept thinking to myself that I wish we could go to the beach often even though I'll be spending my time chasing after her rather than sitting my bum in a beach chair getting some rays...and that's okay too. Above all, I kept thinking how "normal" this all feels, how happy I was that she was happy and content and isn't that what we want for our children? Yes, yes and YES! Her inner peace is my inner peace here, it's no wonder that my in-laws and husband have loved every moment on that beach for over sixty years, which only makes sense that my daughter and myself are the happiest near the ocean and vision beach. So my goal is to get down to the beach as often as I can with Autumn before the water starts to get cold in October. 

While at the shorehouse and on the beach, I was so excited to finally talk to another "special needs" mom and family who "gets it". We shared our stories and frustrations and it just felt good to talk to someone whose been through similar experiences that were currently going through. This also brings up the next "topic" that's been inspired by the husband and I hope not to offend anyone here...

So my husband and me had a very lovely conversation Sunday driving back home and while at home. We talk a lot to one another, and I mean A LOT. After all, he IS my best friend and I am his. Any ways, I shared with him how great it felt that I was able to talk to another special needs mom and all that jazz. He went on to disclose something that was harsh, which excludes family members and my online support groups and here it goes: we don't have any friends. His point was very valid. The "friends" we do have don't understand what were going through with Autumn because they don't have kids yet, live too far away or are too busy with their "normal lives" to make time for us and who can blame them? As Matt put it, "normal parents want to do normal things with their normal kids...let's face it Trish, our little family will never be normal. This IS our normal." 

Theres a lot of truth behind my husband's words. He went on to disclose how he feels isolated at times and that at the end of the day, everything falls/is on us. Just him and me. It's a pain that I can't describe. I already know that his/my ideas on what parenting was "supposed" to be like have been jaded since her diagnosis, but these feelings of isolation and loneliness are even stronger. Bottom line: having a child with special needs, and in our case, autism, has made us (especially him) feel like were living on our own secluded island. Sure, this "island" is beautiful and majestic but the water that surrounds it can be very rough, which makes it difficult for those to "reach us" or for us to "reach them" at times. It's within those waters that fear lies. The fear that keeps those whom we care about away because of the unknown. A fear that builds barriers, walls and ignorance. The obligations behind the fear consumes our lives that we often forget how calmness feels like. A fear that I hope will subside with time and eventually we won't feel so alone anymore and we'll have "visitors" from time to time and we too can get off this island once in a while when the weather is appropriate.  

So after disclosing our feelings and hearing the hurt and pain within my husband's voice, I had to remind him how grateful I am to have him next to me on this journey and that were so lucky to have each other and really, that's all that matters at the end of the day. 

On the upside, I hear that the "special needs" parents in our town are wonderful. I am sure once Autumn starts preschool I will get to meet some moms who "get it" and they will become part of my village as I will in theirs. This doesn't mean that the friends I had previously don't matter, it just means were moving in separate directions and that's okay. That's life. The true ones will still be there regardless. 

Overall, my husband's revelation is a sad reality for many special needs parents: we do feel alone and isolated, even from family and close friends, until we find our "village" and those who truly "get it". Our marriage lives tend to be put on the back burner (no date night unless it's a wedding, anniversary or a birthday-as for personal time haha, unless driving and sleeping counts) and everything in our lives revolve around our kids who need extra, extra help and support in life in hopes that maybe, just maybe, they will grow up to be self-sufficient, responsible adults without requiring extra care someday.  Sure, don't ALL parents experience the above? Yes, but it's like comparing apples and oranges: they're both fruits but entirely different in their own rites. That's the same when trying to compare typical kids and not typical kids, one just can't. 

Lastly, ending with the words of my favorite singer/songwriter Sarah McLachlan that the hubby says reminds him of us (well Autumn and me) and he couldn't be more right. "We're gonna push on through, pretty girl, Just like we always do, beautiful girl. I know the world can be cruel, pretty girl. You're gonna make it 'cause you've got love on your side. One thing I know is it will get better." 

Yup, Sarah, I agree. It will. It has to because we do have love on our side. You're that love husband. Remember that. Forever and for always.  


Xoxo,

Trish


My true loves (missing Leah here). 



 

Tuesday, July 22, 2014

What IS Forever?

So yesterday I updated you all on how fantastic Autumn has been doing and on my new job opportunity working for Early Intervention services once she starts school. I was feeling FANTASTIC then poof, that changed as soon as I started to read her evaluations from her new SLP and OT. 

Within the past month, Autumn has had three discharge summaries, two Battelle evals, one OT eval for school, two evals at the clinic, an IEP and an eval for the VB-MAPP (verbal-behavioral milestones assessment performance program). Ten meetings that I've had to disclose the same words over and over again. Ten meetings where her "limitations" have been noted. Ten meetings to remind me, shit, this is real. Her Autism IS real. 

I know that my posts lately have been filled with rainbows and butterflies prancing around in the glorious sunlight, depicting hope and remaining focused on "the good" within my daughter. Not on just the negative aspects or the realities that could quite possibly be "her forever", "our forever".  It's a feeling that I've chosen to dominate my mind but the other still lingers there so quietly and that, my friends, is today's focus.

Now reading the reports, always subjective to an extent, made me very upset because it listed her social skills at being of a six month old. Wait, six month olds have social skills? I just assumed most babies that age were just learning how to sit up and coo at this point. I am extremely pissed by this and will be saying something today when we go back. To make a judgment off of five minutes of her going from toy to toy because she's excited, which I already mentioned prior to our arrival, just ticked me off. She scored the highest in social/emotional at the school and within the ELAP so explain this to me? Hopefully a typo error. I'll just approach it like that... 
*** UPDATE: I did confront her SLP today to ask her where/how she determined her findings and I think I probably made her cry...totally not my intention. Just didn't understand how her scores elsewhere were much more higher yet hers was so low. I told her everything I've mentioned here and I think and hope she agreed and was empathetic and understanding about. We will see how next week goes and if I still feel similar, then I will look at another place to take Autumn for speech (theres other things that bother me but I'm choosing not to mention here).

I know that I should just take their wordings with a grain of salt and keep moving forward like I always do, but I can't help but wonder AND worry about Autumn's future within this moment when I promised myself I wouldn't try to think too far ahead. The realities are there. Dang it. I seriously thought I'd be immune to these feelings, but I'm not. Watching some Autism documentaries this past week also amplified some of my concerns. I guess these "worries" have to keep me grounded and not so much in la-la land hoping that she is going to truly climb out that window and be a typical child someday, even though anything is possible (here I go being that internal optimist again). It also has made me realize, and maybe it's just the feelings of being burned out from evals and meetings this past month, how I dislike this all and just wish we had a normal, uneventful life. Not this running around all over the place, hearing everyone's subjective opinions about my child and feeling like you and you alone are the only one in the battlefield, advocating for your child and doing the best you can with minimal support.

I will tell you all this much. All of these opinions and subjections surely knock one off their horse from thinking that their kid "is the best" in life. Man oh man, having a special needs child of any sort really does ground parents and teaches us to focus on what our child can do, even though what they're not doing is a constant discussion and motivator. So I add to my list of "what my autistic child has taught me" and this probably summarizes this entire post/rant: It sucks, and yes I said sucks, hearing about how "un-perfect" my child is and how she has these so-called limitations and how she isn't "the best" bc she is "special" but "special" because of those limitations. I hate being critiqued. I hate hearing where I need to improve as a parent mainly because I'm not her only parent and feel that the other one gets off square cleaned. I hate it bc I don't like criticism and never had and feel like it's "all on me". It's a huge pill that I choke on constantly and this, my friends, is the biggest dilmemna that I've had to overcome or try my best to not take so personally. This, my friends, is MY biggest struggle that I fight daily and will continue to fight. I am sure I will just lol at it all and grow numb to it as I hear more and more about "improvements" Yada Yada Yada...

Now as for Autumn's forever? Who knows. Like I said previously, I can't think about next week, let alone "her future", which isn't probably very smart but it's my way of coping with the present moment. Even if this sounds naive and after my ranting and stating the annoyances above, I'm going to go back to thinking that everything is "rainbows and butterflies" today. I'm not going to allow the dark thoughts consume me or make me feel like a crappy parent. I'm not going to allow subjections rule my outlook on my beautiful daughter, despite what they think or say. I'm going to choose to see differently and even if it pisses people off that I choose hope. To hell with them as I smile and try my best to enjoy Autumn being Autumn. 

Here's Autumn being Autumn squashed between her teddy bear and chair:

Funny way to conclude. Yesterday were Autumn's first sessions at the clinic. Her OT comes out and says, "goodness, I don't know how mom you do it bc Autumn is intense within needing those deep pressure and lots of input." Yup, that's my kid. Hopefully the more and more she becomes regulated, the less input she'll need. However, I'm certain the hugs won't stop. 😉 

Xoxo,

Trish 


Saturday, July 19, 2014

The Week In Review: Awesome!

I suppose the title says it all and you all can stop reading (just kidding), but seriously, it was an awesome week. Busy, but awesome. 

Let me break it all down starting with her clinic evals. Autumn was her usual hyperactive self at the clinic because everything was fun and new. Her new OT and SLP seem lovely. It's going to take me a while to adapt to them but I really do like them and what they will be able to offer Autumn. They both determined that she could benefit from 2x a week speech and OT. I agree, however because of summer schedules, we might only be able to get in on service once a week and the other twice. They said they'd like to have her for OT and then speech back to back. I prefer this as well bc I personally don't want to be running her around all week if she can have the sessions back to back. She did this while in EI so I am sure she can handle it at the clinic. We start Monday with services. 

Second, the IEP. As my Facebook page updates had indicated, all went exceptionally well. Very pleased and grateful for the CST we do have here in my township. Overall, we agreed to have her be placed in a self-contained class. It is the best class for her that will have four aides and the most one to one attention that she requires. She'll go to the integrated preschool class for snack time and other activities as she gets older. She will be going half-days, five days a week. She was offered full days but I declined right now because I want to see how she adjusts to the school setting. She will be going to an elementary school so this is going to be an entirely different world for her. I also declined bus services. I want to be able to pick her up and drop her off on a daily basis. Until she's able to express her day to me, I will not be putting her on a bus yet. Someday yes, but not at three. She will also have OT and Speech, both 2x a week, individual for now until she is able to work within a group environment. They will provide me with daily progress notes, a speech and OT book so that I know what's she's doing and how I can carry over what she's learning while she's home. Every question and accommodation I wanted she's getting. I'm happy with that. Overall, the meeting wasn't as intimidating or overwhelming as I suspected. Luckily, Autumn's OT from EI was also present at the meeting bc she will be her OT at the school. Her and I spoke for a good 15 minutes privately after the meeting and it was nice hearing her comments and suggestions moving forward. 

Third, Autumns three year wellness visit went well. She's 40 inches tall and 38 pounds and is growing perfectly according to her pediatrician. She also received her MMR at this appointment and guess what, she hasn't melted yet. Still a jumping bean, silly little girl. The pediatrician and me had a good talk about Autumn's autism and him believing she will overcome some of the challenges associated with Autism due to EI and us being proactive by getting her extra therapies and the services she needs. He said she's probably on the mild-moderate level of autism but to not worry too much into it because he too has noticed a great change in her over the past year. He also stated what the CST stated, in a year, especially two years from now she's going to be an entirely different kid. I suspect this too because she'll be older (duh) but the concerns I've had will not be so heavy in the future. Still, I plan to take things daily and embrace the little things she does now. I also registered her for pre-k3 I can't believe Autumn is going to school this fall! I will be a total emotional wreck but I trust that she'll be in excellent hands. 

Lastly, and this one's about me. Starting in September (because it's going to take that long to do my trainings and paperwork), I'm going to be working for an agency that's contracted throughout the state to provide Early Intervention services. Thus, this mama bear will be working for EI! I will be providing behavioral intervention services and once I complete other trainings, I'll be writing the programs and behavioral plans for families. It's definitely not the path I envisioned when I started grad school, but because of everything I've been going through with Autumn, this new area/journey in life has inspired a shift career-wise. Sure, I want to still try to obtain my LPC but right now, I want to focus on helping families and children affected by Autism. I want to be an Autism advocate in regards to early detection and helping to implement services (not preventing or finding a cure) as well as focusing on parental support since this area is seriously lacking (especially up in my neck of the woods). Who knew that having my Autumn would be a game-changer in so many different areas within my life.  Sadly, I will make more money doing this than I do as an LAC. I couldn't be happier with this new job opportunity and my decision to work for EI. So, once Autumn starts school, I'll work with families during that time even if it's one family per day. I'm happy with this decision. Plus, we need the extra money so it's time for me to do this. Perfect timing I suppose. Talk about fate.  

So there you all have it. What an excellent week. 

Xoxo,

Trish 

Looking all grown up with her hair pulled back

Monday, July 14, 2014

The Silver-Linings of Autism

It's been a few weeks since I posted last. We had a week long family vacation spending half the time at home relaxing and having Autumn's birthday party and then the other half was spent down at the shore. Loved seeing Belle in the water. She enjoyed every minute of the beach. She better; it's in her blood. Now were back home again and it's filled with a week full of appointments and evals. Fun stuff. I received her multidisciplinary report in the mail from the CST and have read it several times and started to write another "poor me, poor Autumn" type of post but realized, "wait, nah, I'm not going to go there."

So despite all of the negatives associated with Autumn's Autism diagnosis, and believe me, there's a lot, I'm going to take some time to reflect on the silver lining points of it all.  Nothing is in particular order here so bare with me. 

1. Being a parent of a child with Autism has humbled me. Yes it has. I have learned to appreciate what my child CAN do and what her potential is capable of being. Sure, I've mentioned plenty of times her limitations and how they're stuffed down my throat, but I'm trying my best to choose to reflect on how far she's come and how much she's achieved rather than focus on her weaknesses. This brings me to my next point:

2. Being a parent of a child with Autism has also knocked me off my pedestal that I have to "do everything" for my child, all on my own. That's been my entire life: Trish never ever EVER asked for help. I did everything myself. Well not anymore. It's taken me the entire length of Autumn being in EI that I realized I can't continue to feel like I'm the only person to help Autumn. I can't do this alone. It takes a village to raise a child right? Right. The path I was on was making me a miserable person on the brink of depression and turning me into someone I know I'm not. Thus:

3. Having a child with Autism has taught me that there was NOTHING I did wrong, this isn't about me. I'm learning to let go of the guilt of feeling like I somehow caused her autism yet that sounds like the most selfish thing a person could say and what a burden to continue to carry. No wonder I was miserable! I've learned to stop thinking I caused her autism and to stop wasting time wondering what did. That shouldn't matter anymore. She's here and she is whom she is. I've learned to let it go. 

4. Having a child with autism has seriously made me focus on the here and now rather than the what ifs and the future. I was such a future-planning person. Not anymore. I can't think about Autumn in five or ten years from now, heck I can't even think about what our lives will look like next week. If I do, it brings out my anxiety and unnecessary worries and wasted time that I should be spending enjoying the moment. Yes, autism has taught me to enjoy the moment! 

5. Having a child with Autism has seriously made me appreciate all of the things my daughter does and to not take anything she does for granted, especially her words. As many of you know, I'm a talker. I love to talk! It's no wonder why I became a therapist. So having a child with a significant speech delay hasn't been easy because we've struggled in the communication department. However, as the words come, I sit with anticipation listening to that small voice. A voice I will never take for granted as I can only hope that someday I will be able to tell you all "this kid won't shut up"! I mean this about all of the things Autumn will do someday. I say do because of:

6. Having a child with Autism has broadened my faith in God. Sure I have my "poor me, why her, why us" moments but when I take a deep breath, step back and look at the entire picture, I see hope and potential. Sounds cheesy perhaps but that's how I have to get through this. The internal optimist always hoping things will get better and they will. I truly believe God only gives us what we can handle and he must of thought I can handle being a mom of a child with special needs. If that's my struggle in life, life can't be too bad. 

7. Having a child with Autism has possibly spared me from some of the "typical" struggles my friends will go through with their kids. The competitive sports crap, the girl drama, all of that jazz, I have a feeling we will only see minimal of that in Autumn's life and hey, that's fine by me. 

8. Having a child with Autism can be pretty cool at times. Yes it is. Want to know why? Autumn is very content with simplicity. Her routine, her books, her shows, just running and playing outside or on the beach is enough for her. She doesn't need constant stimulation that will make her go into sensory overload. She also doesn't need me 24/7 to entertain her every moment. She's predictable. I know what she wants and when she wants it and I know what makes her tick. So in a sense, parenting her is easy, but can be overwhelming because I don't get much "me" time alone, but that too will be coming soon enough. Also, because she's constantly moving, so am I. Who needs a gym when I have Autumn around. Somedays I want her to just sit and play but I am glad she likes to move. It keeps me going as well. 

9. As strange as this may sound, having a child with autism has made me love and appreciate my spouse even more. Long story short. Matt and I got married very young (he was 23 I was 24). We were college sweethearts and best friends. We knew when we were 19/20 we wanted to get married to one another. Not many people approved of our engagement bc they thought we were "too young" and didn't date enough people to know whether this was the right decision. Well we didn't care what they thought and got married anyway. We enjoyed our stress-free lives doing everything twenty-something yuppies do from traveling to buying our first home to degrees to enjoying life. It was awesome! Married seven years now and times haven't been easy, especially once we became parents. I hear the divorce rate is higher for special needs parents and I understand why. No alone time and focusing on the kids leaves couples exhausted and they put themselves last. Okay, so my point here is this: despite how busy and crazy our lives have been, the one thing that remains sane is my love for him. Even though I feel alone at times, I know he's right beside me. He's the only other person who gets this life we live because he's living it too. We are in this together, hand in hand becuse that's "true love" and Matt is and will continue to be my partner through this all. 

10. Overall, having a child with Autism has made me let go of everything I once thought about being a parent and to embrace the life I'm currently living. To try my best to stop complaining and feeling sorry for myself because at the end of the day, this is a pretty good life. I made the decision to become a mother regardless of my child's challenges and I'm trying my best to enjoy this journey as the scenery changes every day. It's an ongoing battle that I'm hoping the internal optimist within me will win. 

Yes, all of the above sounds so lolly gaggy, spinning around in circles on top of a mountain, too positive and possibility superficial, but I don't care if it does. This is me being real. I can either focus on all of the crap, because there is always going to be crap, or share the love. I chose to share the love and to conclude with more love:

Lastly, to my sweet Autumn: I love when you make crow sounds when you get excited. I love how your face lights up when you look at me after saying a word. I love how you squeeze me and find comfort in my arms whenever you need "pressure" to keep your sensories in check. I love how fast you run even though you never sit still. I love watching you flip through your books and recite the words from your memory. I love how eager you are to learn something new and to try your best to complete a task even though you sometimes get frustrated. I love how you'll say random words and make me giggle and then you laugh too. I love that you're talking more and saying "I love you" to daddy and me when we say it to you first. I love how content you seem when your eating your pasta or when you're on the beach rolling around in the sand. I love the way you grab my hand to  "walk" and you rock from side to side when you're waiting for your milk or juice. I love that you still want me to hold you and enjoy cuddles while eating your popcorn. I love that when I leave the room you cry because you miss me too. I love to watch you when your in the car and your moving along to the music. I love watching you when your sleeping because you look like an angel. I love it when you smile because it lightens my world. I love so many things about you there's too many to list here. Above all, I love you for you. 
(Autumn on the beach, she loved it) 

XOXO,

Trish