Beautifully Different

Everyone is entitled to their own opinions and their perspective may not be like that of yours, and that's alright. That's what makes us different, and different isn't bad.

Somewhere along the way I think we lost that important piece of passage...Different isn't bad! 

Say it out loud

Different Isn't Bad! 

I was born to be different, unique and special. My differences are not like your differences. I'm short, very short. My husband is tall, extremely tall. Different indeed. But that just means he can reach the highs for me and I can get the lows for him. That's the way I look at life. That's my perspective. 

I'm not jealous or envious of his height, I embrace it, I accept it, and I include and incorporate it into my life. We work together as a team to get what needs to be done, done. I love that we are different. 

You can find the beauty in all differences and appreciate and learn from them. 

We all have our differences and we all have something to contribute. We are not the same, but we all want the same thing, and that's acceptance. 

We need to stop fighting about what makes us different because it's not a competition. All of us are wired and created differently, and we could all learn from one another and our beautiful differences, unity instead of segregation. 

I will not judge someone or put someone down for what makes them different, because different isn't bad. 

Celebrate diversity

Accept others 

We are all special 

Don't make different a bad thing, because it is a beautiful thing. 

Watching Inside Out made me a better mom

Anna is 4 years old and Zoey is 3 years old. Zoey was diagnosed at 21 months old with ASD, GDD, SPD, and Dyspraxia of speech. It changed our family and it changed how I parent, it did not change how I feel about my children. I love both of my girls, unconditionally!

The plans that I had in my head of what and who I thought I would be as a mother...well those plans were just plans, thoughts, dreams that played out in my mind. I'm not that mom that brings my girls to dance class or play dates. I am the mom that spends her time at doctor's offices, fighting on the phone for services, and I am the mom that turned into an advocate immediately after diagnosis day.

When you are given a diagnosis for your child something changes inside of you, you're not just a parent, you are their caretaker, you are their voice, you are their person. What you do will impact their future long after you are gone, and that thought never escapes you. You take on new fears, new worries, new struggles, you learn the true meaning of love and your heart has moments of beautiful joy and happiness as well as moments of sheer utter heartache and heartbreak, All of these feelings and emotions that you feel are a lot to carry. You push on and when people ask you "I don't know how you do it?" You just grin and bear that question because what other option do you have, there is no alternative, this is your child.

I poured myself into advocating, fighting for my child, and researching anything and everything that I possibly could. Autism became my life and everything revolved around autism...early intervention at home for over a year, paperwork, so many specialists and doctor's appointments that I lost count, paperwork, dealing with insurance (that's the worst) IFSP's and IEP's...did I mention the paperwork?!

Life as we knew it had forever changed, I was not the mom that I had thought I would be. I'm the mom just trying to survive, trying to make a difference, trying...trying...trying!

I tried so hard and so much that I failed!

I'm hard on myself, I know that...but I can't escape this feeling of guilt. That's how we are made, everyone has feelings and emotions and sometimes you get so wrapped up in your own feelings and your own emotions that you don't realize that a smaller version of you is having a hard time with her feelings and emotions too.

I was doing and being so much for Zoey, that I failed Anna!

You may think that your child is too young to understand and too young to know, but they do. Look at how you feel as a special needs parent and now double all of that. A sibling to a child with special needs feels all that you feel, as well as their own feelings. This little girl has watched and waited to have a conversation with a sister and still waits, she feels left out and not as special as her sister that gets SO much attention, she misses that she can't do something with her whole family, but she does cherish the moments when mommy or daddy do something special with just her, while the other parent stays home with her little sister. She has feelings and emotions that she doesn't know how to explain, so she keeps them locked away, and this little girl takes on some of the behavioral traits as her special needs sibling so that she too can get the same attention.


I didn't mean to dismiss her feelings and emotions and I never wanted her to feel like this! I'll be honest, I never would have realized what was happening, I mean I would have, but not as quickly as I did had I not watched the Disney movie Inside Out with my girls.  Watching that movie was the best thing I could have ever watched. I immediately related to Anna and her feelings and emotions, I watched this movie and saw my Anna and I knew what I had to do.

We were going to talk about her feelings. What makes her sad, what makes her angry, what fears does she have, what disgusts her, and most importantly...what brings her joy? We were going to talk and have a discussion about just her! That conversation happened as soon as the movie was over, I didn't and couldn't wait...she had waited long enough!

I pulled Anna aside and we talked about how much we liked the movie. I then asked her what feeling was she? She went quiet. I then asked "are you mad at mommy?" she looked up at me and immediately said "No!" I then asked her who she was mad at and she put her head down and pointed at Zoey.

I was feeling sadness and anger at myself. How could I have not seen this, how could I have failed her so much?

I had the "talk" with her.

Me: I want you to know that I love you very much, and I love Zoey and Daddy very much too. You and Zoey are sisters. You go to your school and you sing songs and play with your friends at school and you know how to use the potty like a big girl and you can tell me what you want to eat and what you want to drink, and if your belly hurts or you have to go to the bathroom...you can tell me and I help you, because I love you so much!

I also love Zoey so much. She can't tell me that she's hungry or thirsty or even what she wants to eat or drink, she can't use the potty and I'm not sure when she will use the potty. She can't tell me when she's hurt, sad, angry, or happy...I don't know her feelings at all. So Zoey goes to a special school where they work with her everyday to see if they can help her get her words out, so that we can help her, because we love her so much.

Anna: Why can't Zoey talk, mommy?

Me: Zoey learns differently than we do, Zoey has Autism. She is still our beautiful little Zoey Bear and that will never change, we just need to help her do things that she can not do for herself, do you understand?

Anna: Yes, Zoey has autism, but she's still our Zoey Bear.

We hugged and I told her again how much I love her and that she could always tell me her feelings, because her feelings are important. She smiled and went on her way to play, I sat there watching her walk away and I no longer felt anger or sadness, I felt joy and love...so much love!


Never has a movie spoken to me like this before, thank you Inside Out for teaching me how to talk to my oldest daughter about what it's like to be the sibling of a special needs child!

I'm a parent just like you!

I'm a parent to two beautiful little girls. Anna is five and Zoey is three, 16 months apart. They are so much alike, but very different. 

Zoey is a fiesty and strong little girl who loves music, apples, beefaroni, and walks around with her blankie and milk. And unlike her sister, we don't have conversations about if worms have teeth or not, we don't have conversations at all. Zoey has a very limited vocabulary as of right now, Zoey has autism. She can't speak for herself so I speak for her, and I've gotten pretty good at knowing what she needs, I'm her Mom. I just know. 

You see these little ones with autism grow up to be teens and adults with autism. I knew as soon as she was diagnosed the urgency of Early Intervention. I fought for her, I became the voice that she didn't have, I was not going to lose my baby. She started receiving EI at 19 months old, and I've journaled it all. I read all the blogs with the Moms with older children on the Spectrum and I think and worry about Zoey's future, that's what parents do...all parents! 

And just like that I became an advocate. 

Our life and our routine are not like everyone else's, I've had other parents look at me and judge me because of Zoey's behavior and her sensitivities. Zoey has autism and sensory processing disorder, and her SPD is considered on the severe end of the Spectrum. Yes, just like autism is a spectrum, so is SPD. 

People don't see what it's like in our house, they judge when we take her out in public. I've left grocery carts at the Grocery store, I've had to explain my daughter's quirks when a gentleman told me that I should have her on a leash, I've had people laugh and stare, and people have even mentioned "have you tried spanking her?"

It's sad! They don't know about autism or sensory processing disorder and they don't see our every day life. They see us for 10 to 15 minutes because I have a Doctors appointment or an errand to run. They don't see that as soon as we are home, Zoey will strip down to nothing and I have to give her my phone and play music so that I can keep her still so that I can put a diaper on my 3 year old before she pees or poops on the floor, and put her footed pajamas with the feet cut off on her backwards so that she can't take them off. 

They don't see me trying to soothe my child with music, when I really want to hold her and hug her, but her SPD is so severe that my child doesn't do hugs and she doesn't let me hold her. 

Food aversions, sound sensitivities, compulsive and impulsive behaviors, climbing anything and everything. Her favorite is the sink, she loves to hang off the kitchen sink and splash the water, why? Because she loves water. 

They don't see that my child is stuck in the house for her safety because she will not hold hands and she will bolt off and she will not stop when I yell "stop!"

They don't see that we have her bedroom furniture screwed into the walls. All doors are locked and we are talking about alarms and other safety options. 

As parents we do everything to keep our children safe from harm or pain, I just have to do a little bit more than most. And I will do everything I can to make sure that she gets everything that she needs. Because she will be a teenager and an adult, and I want to make sure she is ready for this world, even though she is stuck in her own. 

I will continue to be her voice until she has one, her advocate when needed, and forever her mommy that loves her! 

I'm her Caretaker, Protector, Teacher, #1 Fan, and yes I am her parent, and she is my child that just happens to be a little different and I love that. 

Awareness and Acceptance for All! 

Why I feel like an outsider and an insider as a special needs mom

As a mom to 2 little girls, my oldest Anna who is 4 and just as funny and loud and precocious as any 4 year old can be, and I'm Zoey's Mommy. Zoey is 3 years old and she was diagnosed at 21 months with autism, sensory processing disorder, and global developmental delay, she was considered severely nonverbal with no guarantee of speech, but if you've followed our journey on https://www.facebook.com/Life-With-Zoey-452893538181979/  you can see by her videos that she's proving them wrong!

We have some pretty significant challenges in our family and we have to take extra precautions to ensure safety for both of our girls. With a 4 and 3 year old, ya gotta be quick and ready for anything!

Zoey needs 1:1 supervision throughout her day at all times. She is impulsive and does not answer or quite fully understand verbal commands, such as "No, Stop, Get Down, Don't touch...DANGER!"

This makes everyday life just a bit harder. She's still in diapers, and I don't know when she will be out of them, she can't stand the way clothes feel on her, so she often strips down to nothing, going places is almost impossible because anything could set her off, bringing her into stores, birthday parties, county fairs, even family gatherings can trigger a meltdown. We've learned through trial and error what works and what doesn't work. 

Music works! She takes my iPhone and she skims through each song and she is instantly calm and we can avoid or quickly end a meltdown, usually. It depends on the setting. 

It's hard, because I don't want Anna to miss out on playing mini golf in the summer, so she and her Daddy went while Zoey and I stayed home. My husband and I don't get to "check in" at restaurants on Facebook and post selfies of us enjoying a meal I didn't have to cook. I'm home, usually cooking 3 different meals. 

And I'm usually sadly declining an invitation to a party or BBQ unless we have respite, which we don't get a lot. 

My daughter won't stop when I say "Stop!"

My daughter won't hold my hand and we have tried every harness, she can get out of your hands and harnesses so fast. 

My daughter doesn't understand the dangers of streets, roads, strangers, lakes, pools, and rivers, or fire pits, big barky dogs who may or may not be good with small children, and my daughter can't tell me or anyone else if something is wrong or if she is hurt! 

I see families apple picking, hiking, biking, trips to the circus, fairs, amusement parks, soccer games, dance recitals, birthday parties, and going to the movies as a family, oh boy that one hurts! I would love for the 4 of us to go out to a movie...but that's not our life right now! 

I watch this not from being outside, I watch it from the inside of my own home. I'm inside, but I'm the outsider. I'm the Mom watching these beautiful and fun family moments from my computer screen, I'm an outsider looking at your moments from the inside, hoping and wishing that someday I'm not the insider, I want to be the outsider having these moments with my family! It's hard to explain that to friends and family who ask us to get a babysitter, or come along to the circus, the fair, or a birthday party. 

What's it like to be on the inside? 

I am a stay at home mom and I've had the honor of watching my girls go from being babies to funny little toddlers with their own individual personalities. 

I have been here through 14 months of intensive in home therapy for Zoey, sitting on the floor, watching her learn and grow, and I too learned and grew from the experience, she let me into her world, and let me tell you...her world is full of music and smiles, I look at her and I know she is happy! I got to witness her "go away" and then come back in an amazing way. She has taught me what hope, faith, and love, unconditional love truly mean. 

Ahh, and my beautiful and quick witted, funny  little Anna. She taught me that she too has become stronger and how wise she is, she's an old soul in a 4 year old's body. She has shown me just how much she loves her sister, and I have witnessed their relationship turn from non existent to one of the strongest bonds I have ever seen. She has watched Zoey right along with me these past 14 months and she rejoices every time Zoey does something she has never done before, I hear all the time "Mommy, did you hear her, did you see what she did?" like when Zoey saw Anna walk into the room and Zoey yells "Anna!"  To watch your 4 year old light up after hearing her younger sister say her name for the first time...well nothing on the outside can even compare to that! 

I watch them run and play and laugh all through the house. We may not get out to go to the movies but we have movie nights at our house and I watch my 2 girls sit together and share a snack. I have watched Anna help Zoey and I have watched Zoey learn to interact and have a relationship with her sister. They love each other and it is obvious, and that makes being on the inside not so bad. 

Being on the inside, I have a front row seat to the biggest and best event I've ever seen. 

What is that?  

My children, my husband, and myself have become a closer family, we all love each other unconditionally. That makes being on the inside, not so bad! 

So for now I will be that Mom who watches your moments from the inside wishing I was on the outside. But I will also be that Mom who is grateful for being inside watching my family and our love for one another grow! 

"From the outside looking in, it's hard to understand. From the inside looking out, it's hard to explain!" - Unknown 

Melissa Cote 2015

The reactions we get when Zoey blasts her music wherever we go

I've gotten used to strangers and Doctors talking to Zoey without her responding back, I know why she doesn't, but they don't!

Zoey has nonverbal autism. She can hear you and I'm pretty positive that she understands you, she is after all still only 3 years old so with her you have 3 year old behavior along with autism...it's really interesting! 

I knew fairly early on that Zoey connected to music, it soothes her, she sings, yes she is nonverbal but she sings. I know, I hear all the time "How is she nonverbal but she can sing?"

I had that same question...

And the answer is simple, she's using a different part of her brain, the part of her brain that responds to music and singing and that is how my child communicates. It's fascinating to watch her! I have many videos of her singing, I sing EVERYTHING to her...cleaning up, getting dressed, eating, diaper changes, anything. You name it I have sung it and she responds to it. 

Music has helped us tremendously in our life. Carrie Underwood taught her to hum along and bring her to her Zen place. Michael Buble sings to her and she knows that she's okay, she's not Lost. Twinkle Twinkle Little Star is her Anthem and she will script it all day long. She is my little star, music runs through her and makes her come alive, I've never seen anything quite like it. 

I know with me that if I hear a song it takes me back to a moment in time and I sing along and I feel great. I enjoy it, music is thereaputic and healing. 

Having a child with nonverbal autism can be challenging, but Zoey makes it okay, I get her. She is the music, she is communicating by songs. She can take my iPhone and navigate through all of my music and she searches out what she wants to listen to...I'm in awe of her when she does this!

We left a neurologist appointment a few months back and she had my phone and was listening to Michael Buble as we left, the Neurologist says "she has good taste!" I laughed and said "she sure does!"

We've been in the grocery store listening to Mary J Blige's "Therapy" with many onlookers watching my child sit in a cart swaying to "When I can go therapy 2 times a day"

My favorite was yesterday. We met with a new Doctor for the first time and Zoey immediately puts on "Demons" by Imagine Dragons. As we sit there listening to the chorus "it's where my demons hide...it's where my demons hide" I listened to this new Doctor say "I love that song!" I laughed and said "yeah Zoey is really into music, it's her thing."

This Doctor started swaying back and forth as we are discussing Zoey's new plan of action and the Doctor stopped talking to me and was singing along with Zoey and said "she makes me wanna dance!"

Okay...out of ALL the reactions to Zoey blasting her music, that by far is my favorite. We finished our appointment, walked out to the front desk to set up a follow up in 3 weeks, and the Doctor followed up front, stood behind her staff and said "Do you hear her, did she play her music for you?"

Zoey was sitting in her stroller listening to "you are my sunshine" and I was a proud Mama because my child with nonverbal autism had communicated by way of music and made someone's day! 

Why I turn to Michael Buble when my daughter has a meltdown

What is a "Meltdown?" I don't know what other ASD parents call a meltdown, but I know what a meltdown looks like and feels like in my house!

Tonight, was going GREAT!! Both my girls were in their beds and asleep before 9pm! That is Awesome in our House. 

I was sitting down getting ready to clean my kitchen and do the things I do when my kids are sleeping. 

Then I heard it...screaming and banging! I rushed into Zoey's room to help her from whatever it was that was bothering her.

Checked her diaper first and that was fine. As I'm trying to figure out what could be setting her off, I notice that she's trying very fast to get her long sleeved onesie off and she is agitated! I go over with a short sleeve shirt and a pair of bloomers and I keep telling her "Zoey, it's okay, I can help...it's okay, I can make it better...you're okay."

As I'm doing this, she's thrashing and kicking and screaming!! I take a kick to the face and another to my throat and I just continue to change her and tell her she's okay!

My husband comes running out to help and I yell "Get my phone!"

He quickly returns with my phone and I immediately go to my music and I start to play one of her "calm down songs"

"Lost" by Michael Buble

As I sit next to her I sing along to the words, and she leans in next to me and I'm able to quickly kiss her forehead. I took her hand and placed it in mine and I just held it and she grasped her hand around my thumb and laid down next to me with her blanket over her head! She's never done that before, I sat there with the song on repeat for like 10 times. She started to make a sound like she was humming or at least trying to hum the song in her way. Then she looks up and smiles! That's what a meltdown is like in my house!

It is not a tantrum, it is Zoey's body and mind telling her and making her feel like she just can't handle or cope with whatever it is that is bothering her. It could be her clothes, it could be a sound, it could be that she just doesn't feel good and she wants to tell me but she can't because the words are trapped. 

I try and imagine myself as Zoey, and I have a very good idea of what it feels like for her, and it breaks my heart. Imagine having conversations and screaming for help but no one can understand you or hear you, you get so frustrated because you want milk, but you don't know how to point and say "milk" you don't know how to point or verbally express your needs or wants at all...and you so badly want to and when you try, only screams come out! Your voice is trapped...screaming and yelling are now your words as your speech is lost in translation. Frustration takes over and the only way to release that frustration is to rock back and forth, bang your head, flap your hands, or spin and sometimes you even just hit your limit and you throw yourself to the floor and cry and thrash around until that frustration eases. 

For Zoey, music helps her to calm down during a meltdown. She can hear the words and whoever is singing is singing to her, she has her favorites like Michael Buble...he sings to her and he's singing "baby you're not lost!"

If he only knew the impact he has and how when he sings to my baby she becomes calm, relaxed, and definitely not Lost! 

"Cause when you feel like you're done

And the darkness has won

Babe, you're not lost

When your world's crashing down

And you can't bear the thought

I said, babe, you're not lost

Life can show no mercy

It can tear your soul apart

It can make you feel like you've gone crazy

But you're not

Things have seemed to change

There's one thing that's still the same

In my heart you have remained

And we can fly fly fly away

'Cause you are not alone

And I am there with you

And we'll get lost together

'Til the light comes pouring through

'Cause when you feel like you're done

And the darkness has won

Babe, you're not lost

When the world's crashing down

And you can not bear the cross

I said, baby, you're not lost"

The beautiful ways my hopes and dreams changed for my child

When Zoey was diagnosed with Autism in August 2014 we were told that "there is no guarantee that she will ever speak."

I hang onto Hope, I cling to Hope, I wear Hope, I sleep and dream Hope, I breathe it in everyday and never release the Hope. It is a part of me! 

My child is a part of me too, she is a piece of my heart, she makes me want to be healthy, to fight for anything and everything she needs, she's made me into someone I never thought, or even dreamt I could be. 

I knew nothing about Autism! I didn't know the different severities, I didn't know that my child may never talk, I didn't know that she would not be able to communicate at all, I didn't know! 

What I did know...To never lose Hope, don't take the small things for granted, and that I love this child unconditionally with all of my heart...that I know! 

Of course I wanted to hear her say "Mama" and wanted her to hug me, and yes I was sad. I put the sadness away and focused on what she could do, she has made huge progress this last year with Early Intervention, and she has opened up to me and we have a bond that we didn't have before. I get hugs, she sits with me, she lets me rub her face, she shows me love without words. 

I was hoping for her to talk so that she would be less frustrated, instead we found a different way to communicate with each other. The funny thing about Hope...do you really know or want what you say you are hoping for, I had Hope that she would speak so she could say "Mama" or "I love you" or at least tell me what she wanted or needed. My Hopes turned into something different...I Hoped for her to be happy, feel less frustrated, and to feel and know love. Those Hopes have come true! 

Then Hope just floats around like a bubble, it's there and airy and beautiful! Then without you asking, praying, or dreaming for it...it just happens! I just make sure to capture that bubble before it pops and wait for the next one...because bubbles are Amazing! 

The great divide within the autism community

My daughter was diagnosed in August, right before she turned two years old. I did everything on the pamphlet that the Neurologist gave me when he said "You're daughter has Autism Spectrum Disorder."

I told family, she was already receiving EI but we were now going to be getting much more...intensive in home therapies everyday. I was praised and commended for being her advocate and getting her diagnosed early and for fighting...man did I fight! 

The pamphlet mentioned finding a support group, I looked and found none. I turned to the internet to find Moms and Dads like me, I knew I wasn't the only one who needed to talk it out and talk with people who get it, people who are living it, just like my family. 

What I didn't know was that there is a great divide in the Autism Community I didn't realize that not only would I be fighting and advocating for my daughter, but I would also be fighting and having to explain myself on how I advocate for her. 

I see it everyday...the great divide! 

I try and stay clear of it because I have a job to do. I am a Mom, Caretaker, Wife, Advocate, and I'm a person living with Autism! No, I do not have Autism...but my daughter does! I change her, not knowing how long she will be in diapers, I keep her safe by bolting furniture, and keeping all doors and windows locked, my kitchen chairs have been on top of my kitchen table for almost a year, I take her to every appointment and there are many, and I sit down on the floor EVERYDAY during her therapies so that I can take it all in and learn it so that I can teach her for when her therapists are not here. Her needs come before mine and I gladly make it that way...I have a job to do! 

I am an Autism Mom, I'm living with Autism! Autism came in to our House when Zoey was 14 months old, and it didn't just change Zoey's life, it changed all of us! I have become her voice, caretaker, teacher, and advocate...I'm living it with her, her sister is living it with her, and her Daddy is living it with her. It affects us all. We are her support system! 

So it baffles me when I see heated discussions through the Autism Community! 

"You can't call yourself an Autism Mom"

"You don't get it because your child is high functioning"

"You don't get it because your child isn't severe"

"Don't call me an Aspie"

"I refer to myself as an Aspie"

"No labels"

"Accept it, he or she is Autistic"

I've watched the fighting and I have seen people get mean and nasty...it's sad!

A child with Autism has a different journey and path than that of an adult with Autism. Each person with Autism is on their own unique and beautiful path...who is anybody to judge how a person advocates for their young child, or how someone chooses to advocate for oneself? 

Don't we all want the same thing in the end? 

AWARENESS. ACCEPTANCE. LOVE.

If we are judged by the way we choose to advocate for a child, teen, or an adult with Autism, then I'm truly saddened! 

That's not true Autism Acceptance! 

We need to Accept that "if you've met one person with Autism, you've met one person with Autism!"

We need to Accept that each path and journey will be different, and that the great divide isn't helping...everyone has their own story and how they choose to tell it...we need to accept that! If we as a community can not Accept one another, how can we ask others to? 

The day Zoey sang Led Zeppelin in the grocery store

Music has been the best therapy for Zoey, it has helped her find her voice, she is still considered nonverbal but this child can sing! 

Not all songs are pretty ballads or catchy lullabies, sometimes the song that she sings is a high pitched angry scream that sounds very much like a Led Zeppelin song. 

Yesterday was that Zeppelin song. We were at the grocery store and she had tried to bolt out of the cart I was pushing, you know the ones with the car in front, yeah well I had both kids in there and it was going great!

 I had stopped the cart and she got out...oh did I forget to mention that her nickname is Houdini. She can get out of any buckle or harness...we really don't know how, other than she's Houdini. 

So there I am chasing her through the produce section of the grocery store and I was able to scoop her up and put her in the carriage part while her sister stayed in the car part. I had just enough of what I needed and was bolting for a checkout...the whole time she's singing Zeppelin at the top of her lungs...you know the chorus screaming part of the song. No, she's not really singing this song, her constant scream is just like that of the song! 

http://youtu.be/kEGuHdKn0Lc

I'm in the checkout lane, groceries are on the belt ready to go...I'm waiting...the screaming chorus continues while everyone turns to stare at us. Not a fun moment. 

I kept looking at Zoey and I'm trying to get her to make eye contact so that she can see that I'm using the sign for sit down and all done, but her singing got louder and louder and it was all you heard throughout the grocery store. 

The woman in front of me turned and looked my way to say "It's that time of the day, huh Mom." I smiled, shook my head and thought to myself yes, if you're in the mood to hear Led Zeppelin's "Immigrant song" sure it's that time of the day! 

I continued trying to sign and get her to look at me, she wasn't having it. The young cashiers were chuckling and smiling, while I was not! 

Then I felt someone behind me, he put his hand on my shoulder and he said "you are a great mom...you are doing great!" Obviously a Zeppelin fan!! 

I thanked him and I said "she's Autistic and this is just a bit too much for her!"

He again looked at me and said "it's okay you're both doing great!" 

I left that grocery store with stares and eyes all on us, but I left that store feeling okay...with tears in my eyes because this one man reached out to say I was doing a good job, I was a good mom...when I felt nothing like that at all! That is Acceptance right there!! 

We got to the car and I immediately put on her calm down song "I will see you again" by Carrie Underwood. She had stopped belting out the screaming chorus of Zeppelin's "Immigrant Song" and instead was singing "Oh Oh Oh...Oh Oh Oh"

So yes, yesterday was plain awful, but that's then, not now!

© 2015

Melissa Cote 

How Carrie Underwood let me know that my autistic child would be ok

When we were given Zoey's diagnosis of Autism, Global Developmental Delay, Dyspraxia of Speech, (Zoey is nonverbal) Sensory Processing Disorder, and Obsessive Compulsive Disorder in August 2014, she was not quite 2 years old. 

Life in our House has turned into Therapy everyday for Zoey, and it has changed how our  little family of four operates. This was definitely not the life that we planned. 

We went full throttle into therapies, starting when Zoey was 19 months old, and we haven't   looked back...as far as therapy goes anyway!

Of course I've looked back, I'd be lying if I said I didn't! I looked back a lot! 

Zoey was hitting every milestone, most of them early, she was walking at 11 months. She was singing and babbling and screaming just to hear her own voice, I watched my beautiful baby grow and learn...at 14 months old I then watched as she "went away!"

She stopped babbling, she stopped eating on her own, she stopped playing with her sister, she hid away in other rooms, and I could no longer pick her up and hug and kiss her, and I missed her, because she was gone! She rocked and banged and screamed and we had to guess what it was she wanted or needed all while she screamed at us, yes her words that were supposed to have been there were gone! 

Frustration, Aggression, and Meltdowns became common and I felt helpless. 

Where did she go? What happened to my baby? She was just here and now she's gone. You see I have pictures and videos of my child  and I look back and all I keep saying in my head is that Autism stole my baby! She was here and then she was gone...I hated Autism for stealing my child, a secret I kept to myself until now! 

My intention is not to offend or upset anyone with that statement, it is something that I've carried with me for 10 months. 

To watch your child throw herself, bite herself, scream out of frustration, and watch her scurry away from you when trying to help or console her...well, that's just not fair, Autism! 

I was sad and depressed and hated Autism for stealing my child and leaving her speechless and frustrated and for making me scared. I was and still am scared for my child. Having a diagnosis of Autism at 2 years old is good and bad. Good because we got Early Intervention earlier than most, Bad because it leaves us with the uncertainty of her future. Will she ever speak, Will she experience the same things her older sister will experience...boyfriends,  (not that my husband and I are rushing that...at all) sleep overs, getting her drivers license, graduating high school, college, marriage, children...will she be able to live independently? 

No one can answer those questions for me right now, and I'm scared for Zoey's future, and the all mighty question of them all..."what if something happens to me...will she be ok?"

These were my thoughts for 10 months! Let me tell you what made me realize that everything was going to be okay.

Music is therapy for Zoey, most people may not understand her when she sings, but I do! She can sing Twinkle Twinkle Little Star all day, I can make it out even if others cannot. Her calm down "meltdown song" is " I WILL SEE YOU AGAIN" by Carrie Underwood. I gotta be honest out of all the songs for her to love, it is the most heartbreaking one for me! 

Here she is loving a song sung by a woman who is singing "I will see you again, this is not where it ends, I will carry you with me, until I see you again"

Tough lyrics for a Mom that blames Autism for stealing her child, and not knowing if I will in fact "see her again."

For months this song has been played on repeat in the car, house, and on my phone or tablet...I cried every time! 

Until I didn't! 

We were driving in the car and of course the song was on repeat like always, and then I heard it, I heard her! She was humming along to the song. Weeks went by and that humming turned into sounding out the melody, and then finally to her singing the song in her way! Others may not hear it, but I do, it's in her own way and it's beautiful...and I sing along with her, and she smiles and I smile. It's going to be okay...she's showing me and singing to me that "I will see her again, this is not where it ends!"

© 2015

Melissa Cote

Do not let anyone treat your child anything less than amazing

So, yesterday was a tough day. We had our 6 month review with Zoey's Neurologist which ended up really being 8 months, but okay!

I had to process the entire hour visit on the 2 hour car ride home, I cried all the way home out of frustration! 

Just because you have an MD after your name, that does not give you the right to talk right through me, talk over me, rush me out, and treat my child like a number from the deli line! He saw her for 1 hour, that's it! 1 hour. What I mean by that 1 hour appointment is how could he possibly know her progress by only seeing her in that 1 hour...without letting me talk and tell him her accomplishments. Just rude!  Zoey has ASD SPD GDD and OCD...I just wanted him to listen to me...she's made leaps and bounds...he didn't listen, he didn't care!

I was told she's made little progress and I was questioned as a parent on how I work with her. "Don't you listen and get instructions from the therapists on how to work with her weekly?" I felt judged as a parent. I showed him the video of her singing and tried to talk to him about all that she has done since he last saw her....he treated her like a statistic, while I wanted to talk about my child and her accomplishments.  He treated her like a label, she is NOT a statistic. She is a human being and so am I, how dare anyone treat us other than that!!

So No, I'm not happy! I'm not impressed! When did human compassion and caring for a patient get exchanged for..."Next!"

I was talked over, talked through, talked at and made to feel like I wasn't doing my job as a parent, and my child was nothing more than generic deli meat being passed back to me, with a "come back in 6 months."

I will not stand for this!!!

I've already made numerous phone calls and she will have a new Neurologist...WE as parents know our children, we see them everyday. I would NEVER say that she has made little progress...NEVER!!

Since EI started 10 months ago, Zoey can now:

*she looks us in the face

*She hugs me

*She sings

*She wants to be around us

*She has started wearing socks and shoes

*She can eat at the table with us

*She is scripting

*She is dancing

*She comes to me and pulls me saying "I want"

*She can count to 7

*She says "bye bye"

There are so many things that she's doing now that she's never done and it's Amazing!

She stopped saying anything, including babbling at 14 months old, she hid away, she was in her own world, and I missed her!!

I don't miss her anymore!! I'm getting her back everyday...that is progress, and it hasn't been slow...this kid is Amazing!! She will be 3 in 5 months and we will then transition her to a developmental pre k program. 

I refuse to have anyone treat her less than Amazing!

So I'm currently looking for a new Neurologist, one who cares, and won't treat her like a statistic and one who will listen to me and my concerns and answer my questions!!

DO NOT LET ANYONE TREAT YOUR CHILD LESS THAN AMAZING!!! 

© 2015

Melissa Cote

It changes nothing

And now we have a name!

We never knew where Zoey fell on the Autism Spectrum, we had a 2nd opinion today with a different Pediatric Neurologist who has just as many diplomas and degrees on his wall as the First Neurologist we saw in August.

Where does she sit on the Spectrum? That has always been my question and no one could answer me...until today! 

Zoey has Classic Severe Nonverbal Autism. 

I was praised for getting her diagnosed so early and was told she is getting more than most 2 year olds as far as therapy goes, with great Therapists. I'm doing everything I can do! I'm doing it right! 

Then why does it hurt so damn bad??? I went in there and said "Yes, I know she has Autism!" I never doubted that. I wanted to know where she was...because she can't tell me where she is...she screams out of frustration and tries SO hard to communicate and help us to help her...but it's painful! Painful for us to watch her scream out of frustration because she wants to eat or drink but the words don't come out and she can't point to what she wants, so she goes to the kitchen and screams. 

Yeah, I wanted to hear something different today...I wanted to hear "I think it's an inner ear issue that could be contributing to her lack of speech" the answer was No to that!

I watched as she turned the lights off and on in the exam room, and when we moved the chairs, I watched as she moved them right back so that she could keep doing it. I then watched as I said "all done" and she screamed at the top of her lungs and then threw herself and had a meltdown in the room. 

I finished with the Neurologist and we said goodbye, while she listened to Michael Buble's Lost on my phone to get her to calm down . We walked out with the Neurologist saying "She has great taste in music!"

She held my phone as I got her into her car seat. I gave her "blankie" and not long after she was asleep. 

I called my husband and told him about our visit and he said "it changes nothing" that is the same exact thing he said to me with her initial diagnosis in August. As I cried into the phone...he knew why I was crying, I don't care about the Autism, I wanted to hear something else, something that went like "yeah let's check her inner ear to see if there is an issue contributing to the lack of speech."

Why did I want to hear that? Watching your child throw herself on the ground because she can't tell you she's hungry or thirsty, or that her ears hurt her or she needs something. She can't point  or ask...she screams! Watching  her scratch and dig at her mouth out of frustration, because her mouth can't say what is in her head what she wants or needs. Frustration, I wanted someone to say "we can help her with her frustration!" It is excruciating and heartbreaking.  You see I can accept Autism, but the Frustration that Autism brings is not fair! I wish things could be easier for her.

She slept in the back, as I cried in the front, because I can't take away that frustration. 

I cried and tears were all down my face. As I waited in line at the McDonald's Drive up to get her chicken nuggets, which I knew she was just going to eat around the crunchy batter and throw the chicken on the floor,  I remembered my husband and what he said...

"It Changes Nothing"

* she's our child

* she has classic Autism

* we love her

* I still wish I could ease

  her frustration

"Classic autism is defined as the most serious form of autistic spectrum disorder. It is also known as ’severe autism’, ’Kanner’s Syndrome’ and ’autism disorder’.

Someone with classic autism has noticeable problems with speech, behaviour and social interaction. They are often hypersensitive and avoid contact with other people on many occasions.

This type of autism like many others is no respecter of age, authenticity, religion or socio-economic background.

Children with classic autism

A child with this type of autism is at the severe end of the spectrum which can be upsetting for their parents. This child will start showing symptoms of classic autism from the age of three onwards which include the following:

Rigid, dogmatic behaviour

Repetitive actions and speech

Self harm, e.g. hitting themselves

Withdrawn and avoids social situations

Obsessive, e.g. focuses on a single interest

The child is extremely sensitive to any form of sensory input such as touch, sounds, smell and sight. Basically, this means that they react violently to sound, light, colour, texture and physical contact. The autistic child dislikes being cuddled, held or touched in any way.

They will often be of normal or below normal intelligence. The classic autistic child will have the most difficulties with verbal language. Their speech will be severely impaired to the extent that they cannot articulate words and sentences and have to rely upon sign language and similar forms of communication."

© 2015

Melissa Cote 

What would I go back and tell myself on diagnosis day?

If I could go back in time and talk to myself on the day we got Zoey's Diagnosis...what would I have told myself?

Everything has just happened So fast!
She had her 18 month check up in May, her Early Intervention Evaluation in June, and she was Diagnosed in August...All SO much SO fast! 

She has been getting EI since June, starting with ST, in October BI started, and OT in December, and PT will be monthly, along with her monthly assessment from her BT who specializes in Autism and oversees all things Zoey!

I'm not trained, I have no idea what I'm doing and many times I have said "I'm just winging it!" I'm a wife, and a Mom. I'm a Mom to "Z" and to her 3 year old sister "A" I try to have nightly dinners ready or almost ready as soon as my husband walks in the door, he works 6 days a week every week and so I like for him to have at least 1 good meal a day. My house is always clean because "A" has allergies that have given her severe eczema and asthma. I try to balance it all...daily therapies with "Z" making sure I spend enough quality/quantity time with both of my children and cleaning and cooking, most always multiple dinners because "Z" doesn't eat what we eat, not for a lack of trying, trust me I'm still trying.
So where do I fit in???

Good question!

My husband and I were approved for Respite and we have been out twice alone without the kids, each time I felt guilty for leaving them, I know...I know, I'm working on that!
But then that's still not just "Me time." I admit, I don't have it. I never scheduled that in to all of this. I'm working so hard to make sure that my husband and my 2 children are okay and happy, that I lost myself along the way. 

So, I'm going to tell you what the girls Pediatrician told me just last night, and how appropriate to be told something like this on New Years Eve...this coming from my children's Doctor, not my own Doctor...I never have the time to see my Doctor, God how I wish this Pediatrician was a Family Practitioner!!

We were talking about "A's" eczema flare up and "Z's eating and sleeping habits and she stopped me and said "You need to take care of you too you know...you are doing everything for these girls and you won't be able to keep doing everything if you don't take care of yourself first!"

I explained that I just wanted to be doing everything that I possibly could for my children and that I was scared that "I'm not doing it right!"

She then said "You ARE doing it right and you ARE doing everything you can for them...but you need to do for you too, you won't be able to keep up if you don't take care of you"
And as always we finished our conversation with her telling me "We will get through this!"
And then she finished by giving me a much needed pep talk

"Look how early you got "Z" diagnosed, most kids don't get diagnosed that early. We will get "A's" eczema flare up under control, and we will just keep on working the Therapies with Zoey"

We said Happy New Year to each other and we hung up! 

After I got off the phone I let out the biggest sigh of relief, I felt as if I was finally given permission to do something that all the other Moms were doing that I was never able to do!
So, what would I say to myself on the day we got "Z's" diagnosis?

"It's okay, everything is going to be okay, not perfect like your brain thinks everything needs to be, so tell your OCD to calm down and take a break. Don't push yourself so hard and too fast that you lose yourself and who you are...yes, you are still a Wife and a Mother, but you are still You too, don't leave yourself out...and by the way

You Got This!"

© 2015

Melissa Cote 

The Cross Country Blanket

HOW PEOPLE ALL OVER THE COUNTRY STOPPED WHAT THEY WERE DOING BECAUSE OF A BLANKET!

This is not JUST a blanket, this is her life line, her constant, her meltdown diffuser, and her connection to the world. It is in just about EVERY picture I've ever taken of her. She eats with it, she wraps her whole body in it when she sleeps, it goes in the sand box and sensory table with her, and she would take it in the tub if we let her.

One of my friends started a Facebook post to help find a back up blanket for Zoey to help keep her calm if hers needed to be washed or even scarier if hers were to ever be lost. If that happened, well my husband and I didn't even want to think about that!

My friend is aware that Zoey's blanket is getting old and worn. When we wash it, it physically and mentally hurts her. She will cry and scream and wait at the gate to the stairs until it comes out...and that happens even though we wash and dry it all alone so it gets done quicker!

I'm in Awe of how far the
picture of her blanket went. So many people all over the country were looking for it. You see I had already been searching on my own for months, with no luck!

People that have never met my beautiful Zoey all stopped what they were doing to help her!

People shared the post, looked through their own items, and searched the Internet. It made it to the sale sites and Mommy groups and Blogs here in New Hampshire too! I was amazed!! People had stopped everything that they were doing and were on the hunt for this blanket, or at very least one close to it.

People that have never met my beautiful Zoey all rallied to help find her a back up blanket.

It took 1 Day of a picture of her blanket going viral! That night I got a Facebook Message that a woman in Louisville, KY had searched through a pile of items that she was getting ready to donate and found a blanket almost completely identical to Zoey's. She was mailing it the next day.

I was overcome with happy tears! The woman who sent it also has 2 children on the Spectrum so she knew how big a deal this was for Zoey. I offered money and to pay shipping and she said "No need."

The blanket arrived in the mail 3 days later and Zoey took to it immediately! I never met or spoke with this woman, and she has no idea how she changed our lives. This Blanket is her EVERYTHING!

I sent a Thank you card to this woman, but no card or words could ever express my thanks and appreciation for what she did for Zoey. If she ever comes across this and reads it...Thank You, Thank You So Much!

I'm thankful for the kindness and generosity of friends and people helping people! And because I am Zoey's voice, I thank you from her as well!

© 2015

Melissa Cote 

The day I became an advocate

THE DAY I BECAME AN ADVOCATE!

 On September 11th, 2014 I watched as my 22 month old daughter was held down by 5 Hospital staff; Nurses and Aides and wrapped in 2 blankets like a burrito to have EEG Leeds put on her head. She screamed and cried and tears fell down her face like she was being hurt! They kept saying "This doesn't hurt her"

Obviously they didn't get the memo...she's Autistic and Sensory Sensitive! Just having someone touch her hurts her, clothes  hurt her, putting socks, shoes, and a coat on hurts her!! They were hurting her!!!

 As I died inside!!!

I called out to her "Zoey, look at Mommy, I'm here...I'm here, I love you...you're okay"

She didn't look for me or look at me once, she just stared out into the room and screamed and tears fell from her face!!

Now if this wasn't bad enough, the Doctor who was on the floor that day came running into the room as this is happening and she screams "STOP...This can't happen today, we don't have a crib."

Any composure that I may have had left, quickly vanished! I looked at the child advocate and I broke down and I cried and I said "NO...I will NOT let you do this to my baby again...I am not leaving...I was promised a crib...GO find a crib, and if you can't, then I will sleep on the floor and hold her bed to make sure she does not fall out...but I AM NOT LEAVING"

This all happened while they were attaching the Leeds to her head and they only had half of them on!

We had this procedure scheduled the day she was diagnosed, and I had a child advocate from the Hospital that was in constant contact with me. I had explained that Zoey needed a crib and I was told we would have one.

They finished the procedure and they unwrapped her from the blankets that were used to restrain her, and she was able to sit up. I gave her some fruit loops and I watched as she crunched away.

All I wanted to do was hold her...she wouldn't let me.

 A nice woman who visits the Hospital with her dog every month stopped in our room and asked if my daughter would like a visit with the dog and I said "sure."

 This is the moment when any amount of denial I had quickly vanished.

I watched as this beautiful yellow lab approached the bed and my daughter didn't look up or even move, I watched as this big dog jumped up on my daughter's hospital bed and started eating the fruit loops around her feet...again, my daughter didn't look up or even flinch. My 22 month old non verbal daughter was in her own little world, she was on sensory overload and traumatized and this dog wasn't going to pull her out and neither was a hug from her Mommy!

I swear a piece of me died that day....and I promised, NEVER again!! This is why I fight, This is why I Advocate for Autism Awareness...I Do it all for her!!

© 2015

Melissa Cote

Be aware...I am a big bad mama grizzly bear!

I AM A BIG BAD MAMA GRIZZLY BEAR

I know now why moms of children with autism get the nickname “Big, Bad Mama Grizzly Bear.” Even before my daughter’s actual diagnosis, I fought and fought hard like a mama bear protecting her baby cub.

I remember the day we were “strongly urged to get her a diagnosis.”June, 2014. My daughter was 19 months old then. I got on the phone calling every pediatric neurologist in New Hampshire and Massachusetts. I was put on wait list after wait list.

My daughter’s pediatrician put in a “RUSH/STAT/ASAP” request on my daughter being seen… because early intervention (EI) is key, and my toddler was almost 2 years old. Timing was everything.

I finally got a call from a children’s hospital and was told, “We’re ready to schedule Zoey for her appointment with the neurologist.” I remember feeling elation, joy, excitement and thank God.

That all quickly diminished when I heard, “We’re booking appointments a year out.” I immediately burst into hysterics. I explained we don’t have a year, we need EI now… we can’t wait! She’ll be 3 and we won’t get the help soon enough.

The receptionist rudely said, “So do you want me to pull the referral?”

I was speechless, only sobs came out. I managed to utter, ” I don’t understand, her doctor put a RUSH/STAT/ASAP on the referral, I don’t understand,” as I sobbed and pled.

Not once did I hear an, “I’m sorry… I understand your fear.” No, I again heard, “So… do you want me to pull the referral?” I sobbed. “Yeah, I guess… I don’t know what to do… I can’t wait, she can’t wait… I guess I have to call somewhere else.” I hung up.

There’s no bigger hurt than trying to fight for your child and to be shut down.

Well… that’s where Mama Bear kicked in. I called the hospital back after I composed myself and I asked for a supervisor… I was going to be heard.

I got a department head on the phone. This was our conversation.

Me: I’m putting you on notice. The way that woman treated me was uncaring, without compassion, rude, and she made me feel like my child was nothing. I’m telling you right now, my child means something; she is something. For a hospital that prides itself on the care of children, you failed when it came to mine. I’m putting you on notice. I will go on every single autism blog and website, and I will tell them and the autism community that you do not care about children with autism.

Department Head: I’m so sorry you were treated that way… your child means something to me. Do I have your permission to log a formal complaint?”

I said yes. I finished my day with no hopes of anything, just the satisfaction that I stuck up and was my child’s voice.

The next day I got a phone call from the hospital. We had an appointment and her diagnosis 17 days later.

Don’t ever give up. Find your inner Grizzly… be your child’s advocate and his or her voice. This is why I’m proud to say I’m a Big, Bad Mama Grizzly Bear!

© 2015 Melissa Cote