Friday, February 20, 2015

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:
Great Job!
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:
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)
Kinetic Sand
Trampoline (jump)
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. 



Wednesday, February 18, 2015

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!



Sunday, February 15, 2015

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. 



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. ❤️