Friday, December 25, 2015

The love a parent has for their special needs child



Either by choice or by accident you decide to bring life into this world.

A mother carries her baby from the time the ge/she is as small as pea until the baby is ready to take his or her first breath. 

This is a big responsibility and one that should not be taken lightly. A mothers love for her child starts before they are even born. 

When a mother or father holds their baby in their arms for the first time, it is like nothing else. It is bigger and better than any feeling, emotion, or thought. It is a blessing, miracle, it's magic! 

As a parent you hold that baby in your arms and you make a vow, you promise, and you swear to God to protect this child from hurt and pain, because, this child came from you, your very own creation, the greatest thing you've ever made. There is NO other love like this. 

You love your parents, you love your spouse/significant other, but it's not and never will compare to the love you have for your beautiful creation. This child you carried, that came from you, this beautiful being that you would lay down your life for in an instant...that kind of love, that is a parents love. 

What if your creation came into this world even more special than you could have ever imagined? What if your child was as fragile as an egg? What if you were not just a mother or a father, but you are now a mother/father as well as the caretaker?

That vow, that promise, that you made, intensifies to a whole new level. 

Imagine you have something and it is the most precious thing to you and you keep it safe and secure so that no one hurts or breaks it on you. You hide it away, you don't share it with others, and you protect it. 

Think about it, do you have something like that? 

You do, great! 

Now multiply that by whatever the highest number is on the planet...it is still not enough! The love a parent has for their child is indescribable. 

As a parent, when you have a medically fragile child or a child with disabilities that needs you to not only be their mommy or daddy, but also their caretaker, you now have the weight of the world and the weight of your child's world on top of your shoulders on top of that you still and always will have that indescribable 
love. 

It's scary, it's emotional, and all you think about, day and night is your promise to this beautiful creation. 

You fight for your child to get the treatment that they deserve, you use your voice to fight for your child because they can't and until they do and can speak for themselves, you are not going to stand quietly by while your child needs you to advocate for him/her. 

Your creation deserves that! 

As you do this, you are teaching this child that he/she is loved, you are teaching him/her how to advocate so that they know how to do it themselves, by you not giving up, you are showing them  how to be strong. 

As a parent you are raising your child to be independent for that day when you are no longer here, you prep them for the world and you give them every single tool that you have, because if you don't, you are setting them up to fail.

A parents love won't let that happen! 

Thursday, December 24, 2015

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. 


Tuesday, December 1, 2015

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!




Friday, October 30, 2015

Why I didn't think Modern Family's Halloween Episode Was Funny or Showed a Modern Family At All




I love Halloween, always have!

There are pumpkins and apples, trick or treating, costumes, parties, pumpkin spice everything, and Halloween themed TV shows for kids and adults...oh did I mention it is also happens to be my Birthday!

This year I was skimming through channels and I happened to find that Modern Family on ABC (owned by Disney) was airing a rerun of last year's Halloween show. I generally like this show and have laughed at many of it's episodes, I had not seen this Halloween episode that actually aired on October of 2014 so I was happy to see it as a rerun this year.

I didn't find it funny at all, and it didn't depict a "Modern Family" to me either. This show is supposed to focus on diversity and acceptance for all families, that's why I liked this show, but I gotta tell ya, after seeing this episode I wasn't impressed.

The show started off great, I have seen their Halloween episodes in previous years and have laughed at how much Claire really loves Halloween and how she gets into it by having the scariest house on the block, that's her thing and it's funny! This episode she had to work on Halloween and Phil, her husband on the show was in charge of Halloween this year. He was excited to be in charge because he was finally going to have a non scary Halloween, he was turning their house into "Awesome Land." Claire learns that her neighbors have a new competition happening in the neighborhood, every neighbor puts in $20.00 and whoever has the scariest house wins. It's funny because this is "Claire's thing...Halloween is her thing" there is no way that her neighbors are going to outdo her on Halloween. She calls out of work and enlists her children to stop what they are doing, tear down "Awesome  Land" and turn their house into the scariest house on the block.

* Commercial Break *

See, good so far! However, they lost me after they came back from Commercials. The show is back on and the Dunphy house has been turned into their idea of what they think is scary. I wasn't scared, I was shocked at what I was seeing and hearing. The house had been turned into a gory Mental hospital! She had her daughter Alex on a gurny with her hands chained and her son Luke standing upright with a straight jacket on...WOW what a way to send a message that Mental illness is scary, try living with it like I do. It is scary for me, I don't want people to be scared of me, is this the message that the creators of this show really want to send to millions of viewers, and at one point it looked as though they were going to redeem themselves in the episode by having someone being offended by this display...but in the end it was a joke! Is that the message? Mental illness is a joke?I live with it, and I'm sorry but I don't find it funny at all! Then I heard something else that just floored me. The son, Luke is standing upright in his straight jacket and he has fallen asleep, when he is woken up he says "wow, this thing is so tight, it's like a Temple Grandin hug."

Whoa!! Did they just go there?
Yup, they did!

I didn't care for that either, you see my youngest daughter was diagnosed with Autism last year and I find it offensive for someone to reference a tight hug to Temple Grandin...a true advocate and someone diagnosed with ASD.

To me that is just as bad as finding someone referencing something that they think is bad, uncool, yucky, or different to words such as: queer, gay, crazy, or retarded!

This type of show makes people think that it's okay to make fun of the mentally ill, and those who are Autistic. We need to be smarter than this people, end the stigma! With 1 in 68 being diagnosed with Autism and 1 in 25 adults just in the U.S. (10 million people) living with mental illness, well that is your Modern Family right there! We need acceptance and we need to end these stigmas on invisible diseases and disorders...we are more than a punchline in a joke on a hit TV comedy sitcom!

Be the change you want to see in the world. It's not black or white, gay or straight...it's Acceptance For All!

Friday, October 23, 2015

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! 


Friday, October 9, 2015

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

Friday, September 18, 2015

Early Intervention is vital



By now most people know me and refer to me as The East Coast Mama Grizzly Bear, I gladly take the name with pride. I am the author/writer of
How did I get that name?

Well that's my very first piece published on the disability website The Mighty https://www.facebook.com/permalink.php?story_fbid=596067520531246&id=452893538181979

I have sat down on my floor and been apart of every aspect of Zoey's therapy plan: Speech, Occupational, Behavior Therapies, as well as Behavior Intervention. For 14 months these professionals have come into our home and have taught me all about getting into Zoey's world! 

14 months of EI is huge when I was initially told I had a year wait, she would have missed out on all this crucial therapy, and it is and has been crucial. 

Zoey was developing and hitting every milestone, babbling and saying "Mama and Dada." 

We had no clue that in just a few short months that Autism would become apart of our life, it had packed its bags and moved on in and became a permenant member of our family. Like most new things there are periods of adjustment and boy did we have that and then some. We had no idea what we were doing, and we had no idea we'd be doing it alone. 

Our support system became the therapists, and my personal support system became other Moms and Dads like us on Facebook...a whole  community of people who just "got it!" I started blogging Zoey's journey with EI and it helped me and then I started getting messages of how I inspired and helped others. 

Zoey was diagnosed with ASD, GDD, OCD, and dyspraxia of speech, they considered her severely nonverbal. 

Our once happy go lucky baby girl had stopped wanting to be picked up, she would actually flinch and keep her arms down if we tried to pick her up, there were no more hugs and kisses. 

Now she sits on my lap, climbs all over me, I waited 14 months of her getting EI to get my first ever kiss from her without having to steal one while she slept, and when she hugs me tight she says "aww baby." She is 3 and I heard "I wuv you" for the first time just a few days ago. I waited 3 years to hear that and 3 years for that kiss and you know what, it was Amazing and so worth the wait.

My child would scream and scream because words were trapped inside her and she could not tell me what she wanted or needed. I never knew when she needed milk or food or what foods she actually liked. I was in a foreign country trying to understand the language and I had no manual...it was hard on all of us! You see, when you get a diagnosis, the whole family goes through every bit of it and we were going through it head on. 

I used to hear "She will talk when she's ready" or "my child didn't talk until he was four" and even "well, she doesn't look autistic"

We went through it alone! 

Not completely alone though! Zoey had in home intensive therapies for 14 months. 
We have this huge support system of professionals that have been in our house for 14 months. They have seen me in my pajamas, hair all disheveled, 4 months without sleep because Zoey was having continuous meltdowns, my house a mess, they have seen me cry, and they have hugged me and cried along with me. 

I'm proud of myself for fighting to get the EI services that Zoey desperately needed, and I am thankful to Zoey's EI Team, we really had the best of the best! As her EI ends now and she transitions to her Developmental Pre K program...let me tell you what Zoey can do!

She sings beautifully and I'm in awe every time I hear her!

She wants us to pick her up now, she comes to us and says "up."

She went from not being able to point or verbally tell us anything to now pointing at the  counter saying "Mo apples."

She hugs and now kisses us (my favorite)

She has words!! We were told that there was no guarantee our child would ever speak, Zoey can say:

Bye Bye
Hi
I wuv you
Ready set go
Daddie
Oey (Zoey)
Dog (with panting like a dog)
Apple
More (now handing me her cup when it's empty)
No
Yes
Pease (please)
Mama (another favorite)

Does she still scream out of frustration, absolutely. But she's mimicking more and more every single day! 

To be told that there was a year wait for EI, fight and get the appointment and diagnosis 17 days later, and to have my child that was considered severely nonverbal to have 14 months of Early Intervention...yeah I'm proud, and I would do it all again! 

I want to thank the BEST EI team for helping our family get into Zoey's world, for all that they have done for us emotionally, and for caring about our child and not treating her just like a statistic! This team is family, they rejoiced in all of the accomplishments and they helped us cope with the set backs. EI was vital for Zoey and we had the Best of the Best! 

Thank you so much for all that you have done for Zoey and our family, we are grateful to you Miss Heidi, Miss Barbara, Miss Kristen, and Mr Bill! 

You helped a sad and scared mom get to know her child, and for her to get to know me! I'm forever grateful! 

Don't let anyone tell you that it can't be done or that you have to wait, or to tell you No!

I didn't! 

We need to have the talk, Early Intervention is vital. In New Hampshire as soon as you turn 3 years old EI ends, and what's scary is that most children are not even diagnosed until after 3 or they are told to wait, like us. Why wait? Early Intervention has been proven to be  the best when a child is diagnosed early on for helping to get into that child's world and learn how they learn. 

Instead we have parents being told that they have to wait or that they missed the age cap. Well, what happens to these children when they become adults? Without this crucial EI we have Autistic Adults who are aging out and some living in assisted facilities. It doesn't have to be this way! 

There should be no age cap! Please help our children now! 1 in 68 children are diagnosed with Autism, that number grows every year. 
Do we help them now when they are newly diagnosed or do we let them age out and have the states pay for them when they age out at 20 years old? 

As parents and educators it is our job to shape and mold the mind of young children, Autistic or not! 

Saturday, August 22, 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! 

Wednesday, August 19, 2015

Remember to breathe in and out





"Good Days and Bad Days"

"Breathe in and out"

"One day at a time" 

"It could be so much worse"

" I don't know how you do it?"

I've heard these sayings and I've said these sayings, but there are days when I want to say 

"It's a bad day, I can't even catch my breath to breathe, it's hard when it's everyday, not just one day, yeah it could be worse, but that doesn't mean that it doesn't just plain ole suck, and I do it because these are my children, how could I not do it.

Raising a child with special needs is difficult, I'm not going to lie and say it's easy because it's not. Raising a child that is Typical with an Atypical sibling is even harder, I know first hand. 

* You try and give enough love and attention to both children and you still feel like you haven't given enough. You cry for your typical child because she or he feels left out or not loved as much or not given enough of your time. You also cry for you Atypical child because you can't ease his or hers frustration like you can so quickly with your Typical child. You feel like you are failing them both!

* You try and give your spouse enough of your time so that he or she feels loved, appreciated, and wanted. You often hear from your spouse "Do you still love me?" and then you argue about how both of you work so hard and start to compare how much harder the other one works, and in the end you settle and agree that you both work hard and that you are  both stressed out and you didn't really mean to argue or fight...and yes "I still love you!"

* You put your needs last because the guilt of actually doing something for yourself eats away at you so much so that you can't possibly do for you until you have met all the needs and wants of your children and spouse. You become physically, emotionally, and mentally exhausted. But you keep on going and doing because there is no alternative. 

* You think and feel things differently than if you had just had 2 Typical children, you try not to treat them differently but they are different. You're happy that one child can color and draw and ride a bike, use the potty by herself and talk so much that you have to say to that child "I know I heard you 3 times silly girl." And you're sad that your other child can't even tell you that she's hungry, hurt, and sad...she can't ride a bike, she's not potty trained, and you hang on waiting impatiently for her to say just ONE word and when you hear it you are elated and you cheer and clap knowing it may be the one and only time you hear it. 

* You think about these 2 children and what their future holds and you cry. You have one child that you can see living independently and being in love and having children of her own, working hard for her money and hopefully happy. Then you pray that the same can happen for your other child, your Atypical child. Will she ever live independently, will she find love and have children, a job and hopefully be happy. 

* You and your spouse learn different ways to do things for each child and sometimes that means that one of us stays home with one child and the other gets to go play mini golf with the other child, and you think to yourself " I suck at mini golf anyway!" It at least helps take the sting out of not being able to do things together as a family. 

* You and your spouse soon realize that being a special needs parent isn't fun, it isn't easy, you are hanging on by a thread wondering if you are even doing it right, scared that you are screwing it up and not fully equipped to handle the job and you are nothing more than just big failures. You don't like to explain to other people why you can't go do things, and why you can't bring your child to a busy crowded place, even though they think she would love it...you don't want to get into it, because they don't get it and you don't want to make them get it and have their pity...you don't want that at all! 

So

"Good Days and Bad Days"

"Breathe in and out"

"One day at a time"

"It could be much worse"

"I don't know how you do it?"

You are a special needs parent, you are a parent, you are a spouse, and you are human. 
You have been given a Special life and a Special family and all you want is to not mess it up! 

With that being said "Tomorrow is a new day!"


Monday, August 10, 2015

What happens to her if something happens to me?




Getting any diagnosis makes you think, those thoughts that are hidden so far in the back of your mind, well they quickly jump to the front of the line in your mind. It's all you think about, you try to stop thinking about them, but like an anxious teenager waiting in line for a roller coaster, they skip to get closer to the front of the line.

After our youngest daughter Zoey was diagnosed with Autism, Dyspraxia of Speech, Sensory Processing Disorder, and OCD, well that anxious teenager cut and was right in the front of the line. 

What was so important, to have to cut all other thoughts to be front and center and be the first in line in my mind...."What happens to her if something happens to me?"

I'm her Mother and now her caretaker, her future is still yet unknown. We don't know how or if she will ever be able to live independently, and it terrifies me. Who will take care of her if something happens to me, who will care for her when I'm gone? 

I'm not going to lie, it is all I think about. It is front and center in my mind and it gets more and more anxious as time goes on. 

I'm not just Zoey's Mom journaling her story and success, I'm a Mom that is going through my own life with struggles of my own. 

I'm starting a new journey in my life, well I actually started in February. With the many health problems I have, I consulted with my Doctor back in February and I have been taking classes and getting insurance and paperwork finalized, So that I can have a medically necessary surgery to be healthy and be around a long time for not just Zoey, but for my whole family. This is one of the hardest things I will ever do and it is a complete lifestyle change...but I'm ready! 

At the end of August, I'm going in for a Sleeve Gastrectomy. Yes, Bariatric Surgery. It is considered medically necessary due to my sleep apnea, high blood pressure, and being obese. 

I'm fighting so hard to make sure that Zoey is getting all of the therapies and seeing all the Doctor's and Professionals that she needs to be happy and healthy, it made me reevaluate my own life. I don't want to have to wonder "What will happen to her when I'm gone?" So now I can speak up and tell that anxious thought "Please go back to the end of the line, no cutting!"

I'm taking the steps to make sure that I'm happy, healthy, and around for a long time. 


Thursday, August 6, 2015

5 ways autism has changed my life for the better




How having a child with special needs changed MY life for the better


1. When our daughter was diagnosed with Autism last August, I changed. I became someone that I never thought I'd be and someone that I would have admired, respected, and looked up to. I found my strength and my voice, because my daughter had no voice, she can't fight for herself, and so I became her fighter and her voice.

2. I have learned so much about Autism and therapies and Zoey's world that I'm not trying to change her world, I'm trying to learn how to be a part of her world. She is Amazing and inspires me daily.

3. I know that I have a right to be heard and that my child has the right to services and that I can say "No" if something is not working for her. She's made me fearless. 

4. I now truly know what unconditional love is. My child is a gift, how I got so lucky...I don't know. I get to see the magic of Zoey everyday and I am proud to be her Mom. 

5. I'm not a quitter, I will NEVER give up on hope, faith, and love for this child...she's made me stronger, better, louder, grateful, and proud 

Yes, Autism has changed my life and yes for the better. I am THAT person, I'm her person! We are all different not less. I'm not just a Wife and a Mom who suffers from Mental illness, I am a Mom, Wife, and now an Advocate who happens to have Mental illness with a daughter who happens to have Autism.  I am raising my true super hero...she hasn't just changed my life, she's saved my life! 

Friday, July 10, 2015

Why I turn to Michael Buble when my daughter with autism 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"


Sunday, July 5, 2015

In our house the little things are big things



Moms and Dads you know what I'm talking about. When your child thinks and acts like you are their everything, their go to person, their superhero, they run to hug you when you come home or jump on your bed to wake you up in the morning, and when they hug you and want you to hold them...you feel it! You feel their love for you. I'm here to say Please don't ever take that for granted. 

One thing about Autism that hurts, is watching your child withdraw so much from you that you no longer are "their person."

No kisses, No Hugs, No Snuggles, No holding hands, No jumping on your bed waking you up, No naps together...you feel like you are not "their person" and you fear that you might never be. 

I watched this firsthand with Zoey. I remember holding her as a baby and kissing her face, hugging her, holding her, I watched her come to me as she learned to crawl and walk and I was "her person!"

Then I wasn't! 

I gotta tell ya, it hurts to love someone so much and then have that someone treat you as a stranger. I tried to hold her, I tried to hug her, I asked for kisses...she pulled away every time. 

I wasn't ready! She was a little over a year old and it was like she wanted to move out and be away from us...I wasn't ready for that, I still had 17 years to prep myself for her to live her own life and do her own things, I wasn't ready for that at only a year old! 

To put your arms out to reach for your child and she backs away with her arms half up as if I were a stranger to her...there is no way to explain that kind of emotional hurt. 

You see your friends holding their babies and cute pictures all over social media and you think, "Why...what did I do, why won't my baby come to me, why am I no longer her person?"

And yeah you get jealous, really jealous! And yeah you hate looking at social media and seeing all these cute pictures of moments that you so badly want...and you cry! 

But I'm her Mother and I never gave up, I never stopped trying to get those hugs or to try and hold her. I wanted to hold my child so bad and so much so that I showed her that it is okay, I can be her person, slowly I would get close to her and put my hand on hers and just show her that it's okay. This went on for months. Meltdowns and tantrums for being a 2 year old who is nonverbal, developmentally delayed, and diagnosed with Autism and Sensory Processing Disorder, my child was uncomfortable in her own body and surroundings. I had to learn that! 

With baby steps and intensive in home therapies, Zoey has come a long way, I journal it all so that she can look back and see how hard she's worked. I'm so proud of her! She has done a lot of "firsts" lately and it is Amazing to witness. 

After a year of therapies, I get hugs, she wants to sit with me, I can hold her for a short time...no kisses yet, but that's okay! 

I'm okay with it, we have a bond, I am her person! 

Today was one of my favorite "firsts" she lay down to nap and I lay next to her and we took our first nap together! My husband took this picture and if it never happens again...I'm okay with it, because I have this picture, this moment, and I know I'm her person! 

Melissa Cote 2015©

Wednesday, July 1, 2015

She gave me her voice and changed my life




I wrote a blog awhile back titled "Moms of children with Autism should be called Big Bad Mama Grizzly Bears."

And I am often referred to as an East Coast Mama Grizzly...I'm proud of it, I gladly accept the title. 

I was shy, non confrontational, I was the push over, and a people pleaser. I didn't know any other way to be. I didn't want to argue or fight or have any conflict with anyone and most times my kindness was taken advantage of and it became a weakness. 

Let me tell you, when you become a Mother your life changes. You turn into that Mama Grizzly protecting her cub, it waits inside you and when your cubs are born, you too are reborn. 

My daughter Zoey had an evaluation last June when she was 19 months old...we were strongly urged to get a diagnosis because at 19 months, Zoey had the communication skills of a 6-8 month old. 

I went into action and I called and called until finally someone was willing to give me an appointment so that we could get the diagnosis that we were so strongly urged to get. 

I was met with extreme opposition and just plain old rudeness. I was told that there would be a year wait, now I knew that Early Intervention was vital and that if we waited a year, Zoey would be 3 and she would miss out on so much...I couldn't wait, I wouldn't wait.

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.
I stood up for my daughter, I stood up for myself, I stood up for us! I was her voice, she gave me her voice. Without out me standing up for us, Zoey would have waited a year and we would not have the Amazing progress and results that we do now. Early Intervention was vital for my child. 
She gave me strength, courage, and her voice, and given the chance I'd do it all over again. I stood up for my child and got her diagnosed with Autism Spectrum Disorder, SPD, OCD, and Global Developmental Delay before she turned 2 years old, and instead of waiting a year for services, she has been getting services for over a year! 
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 

Friday, June 26, 2015

She's nonverbal but she sings beautifully




A nice nurse once told me "Don't EVER let them tell you that she won't talk!"

You hear a lot of famous singers say "I was singing before I was talking!"

 I'm here to tell you that I've seen it firsthand. 

My daughter Zoey was diagnosed with Autism just before her 2nd birthday and we were told that she was considered severely nonverbal. It was as if someone took all my air from my lungs, and my heart was pounding and aching as if it were in a vice grip, while my mind spun around with what we were just told.

We were just told that there was no guarantee that our beautiful 2 year old daughter may never speak, it hurt! 

My husband and I walked to the elevator with my husband carrying Zoey feeling shocked, emotional, and with no guarantee. We looked at each other and with tears in my eyes, my husband said "It changes nothing!"

Intensive in home therapies have been everyday now for a year, and we have seen Zoey make amazing progress and she is our beautiful almost 3 year old now and we have seen her do things we had no guarantee that she would do. She is Amazing. 

She is still considered nonverbal because she cannot speak, but what she lacks in words she totally amazes you with her voice...our baby can sing! Music is therapy for her, Music has allowed her to communicate through song and it is beautiful. We incorporate music into our daily routine and she sings all day long! 

So to that nice nurse that told me, "Don't EVER let them tell you she won't talk"

Thank you, she doesn't talk but she sings to me everyday! 

Here is one of my favorite songs that she sings...


Wednesday, June 17, 2015

The beautiful ways my hopes and dreams changed for my nonverbalautistic 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! 



Friday, June 12, 2015

Compassion can mean so much




I love my children...I have 2 beautiful little girls. My husband and I planned them to be close so that THEY would be close.

Our youngest, Zoey came earlier than expected, so instead of 18 months apart, they are 16 months apart, some would say..."that's not that big of a difference."

I had plans of them both being potty trained together or close to it, visions of them playing together and laughing and talking back and forth with each other and having conversations and witnessing their sisterly bond grow. Then they would go off to school and maybe have the same friends and stick up for each other when the other one needed protecting, fighting over clothes, boys, and make up...definitely clothes. 

My plan and my vision didn't quite happen that way. 

My oldest is 4 and Zoey will be 3 in 3 months. My oldest is potty trained, while Zoey is still in diapers and has to wear footed pajamas with the feet cut off, because if she were in regular clothes all day, well let's just say it's not pretty.  She strips right down, diaper and all and I would be mopping all day. 

There are no conversations between them, just my oldest saying "Mommy, Zoey did this, Zoey did that, Zoey won't get down, she's climbing!" 

My oldest goes to preschool while Zoey has therapies every day. My oldest will hold my hand and answer to her name and knows when I say "Stop, Danger, No, that she needs to stop and let me keep her safe. Zoey will not hold my hand, doesn't always answer to her name, and has no safety awareness at all. I literally have to carry my almost 3 year old or keep her in a stroller whenever we go out. When I would drop my oldest off at school in the morning it was a struggle. Where she would be ready in 10 minutes, Zoey took a half n hour...sometimes more. 

It was on one particular morning that I had struggled to get both girls into the car and off to bring my oldest to preschool, I'm not gonna lie I was sweating and out of breath and really dreading getting out of the car. I got out, had my oldest holding my hand and we walked over to get Zoey out of her car seat. I'm carrying Zoey and my oldest is holding my hand as we walk into the school for morning drop off. My oldest sticks to me like glue as Zoey is screaming, flailing, hitting, biting and kicking...I've got a good grip but she's heavy and I still have to sign my oldest in, get to her cubby, kiss her goodbye and wish her a good day. It was a mess! I manage to do all those things and Zoey manages to get out of my arms and starts darting through all the classrooms, my chase for her ensues. I scoop her up and she's not happy! Screaming, flailing, kicking, hitting, and biting I carry her out to the car. She then goes all stiff making it nearly impossible to get her into her car seat and buckled...but I've done this so many times before, I'm saying "Zoey, it's okay...you're okay...we're going home...bye bye!" as she aggressively resists. I finally get her in, turn around to see that my oldest was waving goodbye to me. I smiled the biggest smile with tears welling up in my eyes and I wave and yell "Have the best day baby, I love you!"

She headed out to the playground with a teacher and I took a deep breathe and headed to the drivers seat. Before I could even get in the car, my oldest' teacher came running out to me and I apologized and asked if my oldest was okay and she said that she had told her that she explained that Zoey was having a hard time and that everything was ok. 

I thanked her! 

We stood there, both of us with tears in our eyes and coming down our faces and she said to me "I know what it's like to have a child kick, hit, and bite...you did a great job!"

Again I thanked her as we both cried. 

She then said to me "From now on call inside and we will come out to get her so that it can be easier for all of you." 

I burst into tears as did she.

She told me "you're not alone, I can make drop offs easier for you...I see how hard you try and I want to help you...please let me help you!"

I shook my head yes as we cried at my car! 

Drop offs are MUCH easier now for everyone! 

Wednesday, May 27, 2015

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? 


Tuesday, May 26, 2015

Why we live in fear





When you become a parent you have hopes, dreams, and even fears of the unknown. It's normal, you carried this life inside of you, you brought him or her home with you and you made sure this little being had everything he or she needed...You became a Mother or Father and it was beautiful and terrifying all at the same time.

Am I doing it right? 

Is he or she hitting milestones? 

Does he or she know how much they are loved?

What did I do? 

Is he or she okay?

What happened? 

Tests and Evaluations and then more Tests  and Evaluations...you soon find out that you are not just any parent, you are a Special Needs Parent! 

Am I doing it right?

Is he or she getting everything and all services that they need?

Will he or she be okay?

What did I do wrong?

How can I help?

New fears come to your mind, fears you never thought that you would have to think about, and it hurts when you do think about them...why? Because this is your child! 
You are now a Mother, Father, Caretaker, Advocate, and most times the voice for your child! 

It's been almost a year since Zoey was diagnosed with autism...God, how I love and adore this child. She has taught me how to be a Warrior mom, an Autism mom, an Advocate, her Voice, and she's brought out strength in me that I NEVER knew I had...I thank God for her everyday! 

So, yes the fears of raising a child with autism are real and downright scary!!

Zoey doesn't hold hands, she doesn't always answer to her name, and she has bolted near our street and into our woods numerous times. She loves water and has no fear or safety awareness at all! My house is on lockdown with locks and furniture bolted to walls, the kitchen chairs are on top of our table, as she climbs EVERYTHING...if there is a way she will find it! 

We have a beautiful backyard where I wish she could go out in more often and just run and be a kid, but we can't get out there much because we don't have it fenced, and I can't take both toddlers out by myself. 

Wandering and Elopement are seen and heard all the time...that is my worst nightmare! 

So, we are applying for a Grant through our local area agency to see if we can fence our yard, I didn't even know things like that existed...So that's why I'm sharing this info. Talk to your local area agency find out if there are Grants that can help you keep your child safe from Bolting, Wandering, and Elopement. 

With Summer now upon us, the fear is more heightened...Safety comes first!






Thursday, May 21, 2015

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! 

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 


Monday, May 4, 2015

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




Friday, April 24, 2015

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