We Survived

(Exhales out) whew, we did it, we made it through Autumn's first year of preschool. I know it may not seem like anything to celebrate due to pretty much almost every child attending preschool is commonplace, but for us, it was yet another milestone to add to the parenting hall of gain. 

Not many parents can say that their child has an IEP going into preschool at 3 or can say that their child is autistic, which means the journey down the educational road will be quite long and possibly a rocky/bumpy ride, but I can. This past year was just the beginning of the many years to come when it pertains to my daughter's education and our experiences with the CST and school district as well as the many teachers, therapists, and other students that we will encounter all in due time. It's definitely not easy hearing all of the opinions of "professionals" stating what is "wrong" or "needs improvements" in regards to a small child who happens to be the love of your life. It took much pride swallowing and letting go this year in order to survive the not so pretty moments of Autumn being in preschool, but we did it and I can honestly say that I'm happy we did.

I've learned that just because my daughter needs extra help in life that I need to take the reigns and accept it. That there's nothing wrong with ME or my parenting that Autumn requires special education. I learned to limit the pity parties and feeling sorry for myself and to look at this alternate venture as an opportunity to become my greater self. Plus, I absolutely love and adore her school, teachers, therapists, and aides who've worked diligently to carve a small place within Autumn's overall future and her heart. They've definitely made their way into mine ❤️

For the parents out there getting ready to send their kids to school for the first time and are overwhelmed with emotion, its going to be okay. Feel how you feel, but don't stay there for too long. Yes, it doesn't feel fair to send your "baby" off to  school full/half days at barely three, but I promise you, you'll learn to love this new change, you'll adapt and you will get through this. Plus, think about all of the cute art work and projects they'll bring home, which will also be worth it. Above all, you're in excellent company. I will continue to be here to support the good moments and the bad. Remember, you're not alone. All the best!

Xoxo,

Trish 

(Left picture, her first day, right picture, her last day of pre-k 3)

My Best Advice

As many of you know, I'm a mother to a beautiful young daughter diagnosed with Autism. She's the light of my life and has brought so much happiness into my world, but at the same time, a lot of mixed emotions and do I dare say, stress, and plenty of it.

Even as a mental health professional and a self-proclaimed "wellness expert", I'm not immune to struggling to find a balance within and can often loose my temper due to the stress of it all knocking at my front door. It sometimes takes the best out of me, but has also provided me with strength and resilience when I've needed it most. 

Being a mother to a child with special needs as well as working for Early Intervention Services as a Behavioral Specialist, I find that some of my families lean on me for mental/moral support and I welcome it. I want to be there for my families in order to help guide them down the best path possible as I was once wearing those new "special needs parent" shoes that have since been worn in. 

I've been asked on numerous occasions by many what my best advice is to give to newly diagnosed families or just to any special needs family in general, and this is my staple that I live and abide by every single day of my newfound life as both a special needs mother and mental health professional: 

Take it "one day at a time."

Yes, I know, a very cliche saying often used among those struggling with addiction/mental illness, but it can also apply to those of us raising special needs individuals.

For instance, throughout most of my life I've struggled with anxiety and depression. I've been able to keep the black knights at bay due to developing coping skills that have since helped me grow into the person I am today. When Autumn was born and just a small baby, I would cry just thinking about her future as it seem so uncertain. I would worry myself sick over nonsense things that were completely out of my control. Even once she received her diagnosis, I spent much of my time reflecting on the whys and how's that I lost sight on the present and the good that she was doing. 

I became (and still do at times bc I'm not perfect) easily stressed and would cry often because as much as I like to think I have control over our lives, I too felt isolated, scared and alone, staring down at the journey of our future together with confusion, worry and sometimes doubt, not knowing if things would be okay with her or with me. I still don't know and probably will never know what precisely is in store for us, but to sit here in panic over the "what ifs" is a sign of a wasted life. I had to teach myself to stop doing this for too long as it would cause me to become angry and resentful, questioning my entire being. Not only did this over-worrying do the above to me, but it took away some amazing moments that have since been stored within my memory box in which I'll never get back again.

Thus, newly diagnosed parents and parental gaurdians of special needs individuals, do me a favor: don't sit in sorrow absorbed within the "what ifs" for too long. Yes, feel those feelings of pain, hurt, saddness, anger, blame, and even regret, but don't let the above emotions overtake the good ones. Trust me when I say, taking it "one day at a time" is the best option within this life of ours. It will bring a sort of peace and tranquility and lessen those anxious feelings of worry as time moves forward.  

I know it sounds too good to be true and that not thinking or reflecting on our childs' future sounds passive, but it's not.  When we put too much emphasis on the future, sometimes the beautiful moments of the present pass us by. Before we know it, tomorrow becomes yesterday and yesterday becomes years ago. Father Time has a funny way of showing us how heavy he can be, but how much we will yearn to feel those lighter weights upon our shoulders when life moves forward. Plus, we will never get this day or moment in time ever again. My Autumn will never be a baby again or two or three on May 31st. 

Learning to take things one day at a time has also helped me appreciate and enjoy each moment we have together in the present. If I start thinking about what Autumn will be doing in September or when she's five, ten or twenty, it will cause me to go into a panic. I just can't think that far ahead, heck, I can't even plan my weekends anymore! I've chosen not to think too far or too much into the future becuse it's path is still unwoven among the threads of life. 

The taking things "one day at a time" approach has saved my sanity and has left me feeling confident as a parent and a professional. I no longer feel as jaded or emotional regarding Autumn and her future because I've chosen to not focus too much of my time and energy worrying about the above. It will be in my face and here before I know it. 

Now excuse me while I go and have a picnic with these two. 

"Time is a wheel in constant motion, always rolling us along. Tell me who wants to look back on their years and wonder where those years have gone?" 

-Lee Ann Womack 

Xoxo,

Trish 

Transitioning Into Preschool

Parents and caregivers, if you find yourself here, it must mean that you have a little one whose getting ready to age out of early intervention. Each state has their own criteria, but most are similar within their practices. What I'm disclosing is simply a guideline as to what I personally went through. Hopefully this helps those of you searching for some insight regarding the entire transitioning process. 

As most of you know, a child who meets the criteria for a "developmental delay" is eligible for early intervention services until the day before he/she turns three. Once they turn three, the public school district takes over until they're twenty-one. 

For those who have children receiving early intervention services, right around the time your child is two or two in a half, your service coordinator should've arranged for a transition planning meeting to discus whether or not you want to move forward with having your child evaluated for special education services within your town's school district. Here in NJ, once a parent/guardian confirms they want their child to be evaluated by the school district, the school has to contact the parent/guardian within ten days upon notice to arrange for the ID meeting to do exactly that: meeting your child and yourself and to discuss a plan of action. This meeting usually takes place 90 days before the child's third birthday. In addition, your service coordinator will send in the paperwork to the school district indicating the above. 

If parents aren't ready to start the transition into preschool, they can waive this option with their service coordinator at the transition planning meeting. However, if in the future the parent wants to have their child evaluated for special education services within their school district, they will have to write a letter indicting this and send it into the special education department. I almost decided to go this route, but changed my mind because I wanted to get the evaluation process done instead of waiting to do it at a later date. 

Once the transition planning meeting has occurred (usually in the home with the service coordinator and someone from the school district-with us, just the service coordinator), next is the ID meeting. It will be a good precursor of what an IEP meeting will look like, well at least for us it was. We had the entire child study team (CST) there: the case manager, social worker, learning consultant, speech and OT, as well as a special education teacher in the room. This can look intimidating for those who've never gone through a meeting such as this one, especially since it may be your first rodeo with your child's school district. I highly recommend bringing another adult with you to help with your child and to also give feedback regarding your child. My husband came with us and our service coordinator was going to attend, but she cancelled last second. Thank goodness my husband came because he was such a help with Autumn while I did all of the talking. 

So during the ID meeting, I chose to disclose her diagnosis with the CST. Parents, you don't have to do this. I did it because I don't care or feel ashamed of a label. After hearing everything, the CST determined Autumn was eligible for an eval for special education services. During our meeting, the CST stated she gets into their program just because of the diagnosis, but they had to go through the proper protocol of evals and the IEP. 

Please keep in mind that even if your child has a diagnosis or is receiving early intervention services that it doesn't guarantee he/she will be eligible to attend your district's special education program. For instance, one of my work kids wasn't eligible because they didn't meet the criteria, which for my school district I learned is being "developmentally delayed in one area up to 18 months". 

Once eligibility at the ID meeting (moving forward with evals) has been determined, you and your child will have to come back to the school possibly several times to complete evaluations. For Autumn, they used the Battelle Inventory (the same one they use in NJ to eval for eligibility of EI services) to assess her skill set. We did this over the course of two appointments as I had to answer questions as well. In addition, Autumn was evaluated by the speech therapist for speech and she was also evaluated for OT (occupational therapy). Luckily, her early intervention OT works for our school district and was able to evaluate her in our home. 

Once the evals are completed, the CST should be sending home via mail an overview of the evals to read/go over before the IEP meeting. Usually the IEP meeting is scheduled right before the child turns three for those who are transitioning into preschool from EI like Autumn. However, since Autumn is a summer baby, we had her meeting a little after her third birthday. We also declined her attending the extended summer program because of her only being able to go for a week and then being out again until September. 

Now, parents, you CAN choose to have your child attend the extended summer program if your child has a summer birthday, it's solely up to you. If your child has a birthday during those months and misses the extended summer program, discuss with the CST as to what you can do in the meantime. We chose to take Autumn to private therapies for speech and OT so that she didn't regress. Luckily, our insurance covers her therapies, but I know not everyone is as fortunate. If insurance doesn't cover therapies, look into state programs. Here in NJ we have Perform Care that may be able to offer behavioral therapy as well as respite services. Again, each state is different so check in with your service coordinator or case worker within your local school district. 

At the IEP meeting, the CST will discuss goals and outcomes and outline them accordingly. Before the IEP, write down your questions as well as your personal goals and come in there prepared. Make sure the CST answers them all and do not feel like a question or a goal that you have is silly or wasting time. This is your child were talking about here. My personal tip is that I highly recommend suggesting a communication log for your child's classroom (most will already have one in place) and for all of their school therapies so that you can carry over what's being practiced at school at home. If you forget to ask something, email your child's case manager. Again, I cannot stress enough the need for constant communication with the school. You want to be on the same page with the CST and classroom teachers so that your child receives the best care possible. Once the IEP meeting is complete, your child can attend school the very next day. They can attend preschool on their third birthday if that's what parents and caregivers choose to do.

I'm sure I'm forgetting things, but in the end, you can go through the entire process above and decide to not send your child. Here in NJ, you can decline services/decide not to send your child, but if you do decide to within the year, you won't have to endure the eval process again. It's tedious and time consuming (felt like that for me at least) so be prepared. 

Overall, this is a very emotional time. Sending your "baby" to school is going to be tough. I know for me it was very difficult to let her go, but I did it. Parents and caregivers, take some time to grieve and process this transition. Reach out to others for support because even though our butterflies going to school really is beneficial, they're still only 3 and not 5 going to school for the first time, which was very difficult for me to grasp. It's like sending your kid to kindergarten two years sooner. That's how it will feel. Plus, within special ed, they want consistency and five days a week. Autumn goes five days a week, half-days, because I wasn't ready to send her full-day just yet. I still battle the idea of sending her full-day (deep breaths, she's going next year whether I like it or not), but I'll cross that bridge when I get there. 

Overall, you (parents) are the expert on your child and you know what's best for him/her. Go with your intuition and do what's right. Sometimes putting one's pride aside is all it takes (well for me at least it was). This is just the stepping stone to a lifetime of advocating for your child. In the end, you both will survive and prosper, and I'll be here for you the entire way. 

Xoxo,

Trish 

Sometimes I Wonder

Even though Autumn has made tremendous progress over the past six months, sometimes I wonder what our lives would look like without Autism.

Who would she be?  

Would her personality be any different?

Sometimes I wonder what it would feel like to just enjoy typical parenting experiences like going to the store together or to the library for storytime without worrying if we'll be judged because she still struggles to communicate past "hi". 

Sometimes I wonder if we'd have more friends and our days would be filled with play dates and mommy and me classes that have since been replaced with therapy sessions and preschool for the handicapped five days a week. 

Sometimes I wonder what it would be like to be able to play together without frustrations and constant meltdowns. 

Sometimes I wonder what dinners at the dining room table would look like together instead of her still being confined to a high chair and eating the same meals over and over again. 

Sometimes I wonder what her voice would sound like during a reciprocal conversation and not just echolalic-scripted speech.

Sometimes I wonder how awesome it would be for her to tell me how she's feeling, especially when she's sick.

Sometimes I wonder what her taking naps/quiet-time would look like instead of her being up before the roosters running around non-stop. 

Sometimes I wonder what different routes and sceneries would look like when driving. That talking would be okay in the car and not cause a meltdown. That talking in general wouldn't cause screaming fits period. 

Sometimes I wonder if she'll ever begin to wear her backpack, want to walk down the stairs herself without still being held, and not afraid to sit on a potty. 

Sometimes I wonder if I'll be changing her diapers forever.

Sometimes I wonder if my arms will eventually fall off from pure exhaustion from picking her up constantly. 

Sometimes I wonder what it would be like to leave her alone for more than one minute without having to constantly check on her. 

Sometimes I wonder if I'll always be this "helicopter mother" that's given me anxiety at night just thinking of ways to keep my daughter safe at all times.

Sometimes I wonder if family really accepts her and loves her or are they ashamed and afraid of her because she's autistic. 

Sometimes I wonder how it would feel to be able to attend a family gathering without worry that I'll be seen as a poor mom because of my daughter's sometimes unpredictable behaviors. 

Sometimes I wonder if she wasn't autistic would she already be a big sister.

Sometimes I wonder if I can really be a mother to one more child because I already feel drained just raising my one.

Sometimes I wonder what life would look like without so many professionals telling me what's "best" for my child.

Sometimes I wonder if her outside therapies are truly helping her or is it just another ploy to make money. 

Sometimes I wonder what she's doing while at school and if she's safe and being cared for with love. 

Sometimes I wonder if I can let my guard down and trust others that they do have the best intentions for my daughter at heart other than just myself and my husband. 

Sometimes I wonder about her future and if she will always be labeled autistic and if so, will that do more harm than good? 

Sometimes I wonder about the career I had to put on hold to give my daughter the best chance in life and the sacrafices I've made that seem to go unnoticed.

Sometimes I wonder if my husband is truly happy and if our marriage is strong enough to overcome the perils of autism.

 

Sometimes I wonder if we will ever be able to have regular date nights and newfound fun family memories that aren't plagued with worry over our daughter's sensory meltdowns and safety. 

Sometimes I wonder how simple things may be if I wasn't raising a child whose autistic.  

Sometimes I wonder if I'm good enough as her mother. If she deserves better. That I'm doing all that I can to help her.

Sometimes I wonder a lot about the "what ifs" in life, but I also realize that despite what may seem like "a missing piece", raising my autistic daughter has brought me so much joy that words cannot even comprehend my true feelings of love, happiness, and acceptance over my sweet girl.  

The people I've met, the friends I've  made, the community I belong within are enough to push those "wonders" aside and enjoy my daughter to the fullest and to appreciate the life I do have right now, today. 

Sometimes I wonder what our lives would look like without autism, but then again, I tend to stop myself from wondering because it's perfect the way it already is! 

Xoxo,

Trish

The Rainbow Connection to Positive Reinforcement

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

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

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

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

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

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

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

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

Awesome!

Great Job!

Good!

Warning 

Time Out (starting out at one minute)

Lose Privilege (take away for five minutes)

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

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

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

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

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

Waits

Listens

Shares/plays nicely

Walks/walks independently up and down stairs

Asks for help/uses her words

Uses inside voice/no screaming

Is gentle with sissy 

Tries new (fill in the blank)

Cleans up 

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

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

Those activities are:

music (dancing to her favorite songs)

iPad

Kinetic Sand

Trampoline (jump)

Legos

Book (reading her favorite ones)

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

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

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

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

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

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

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

Xoxo,

Trish 

Our Yearly Neuro Visit

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Onto the next year!

Xoxo,

Trish 

When Everything Changes

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

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

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

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

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

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

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

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

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

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

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

Xoxo,

Trish 

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