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