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). 

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 

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!)

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

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 

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). 

 

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