Thursday, January 5, 2017

Dear Governor Sununu

I am writing to you as a lifelong resident of our beautiful and great state of New Hampshire. I am also writing to you as a parent to a beautiful and gifted child, actually I'm a mother to two children, two beautifully gifted little girls.

How do I sum up and explain what it's been like in our House these past 2 years?

Some people have asked questions, some don't know what to say, and some are still in denial. It all started when my youngest daughter, Zoey was around 12 months old. 

Zoey who was so full of life and was just the most happiest baby you had ever seen, had just suddenly changed right before our eyes. She would bang and rock her head for her own comfort, she would run into another room to remove herself from being around us, retreating into her own space. She stopped making eye contact, she stopped letting us hold her and pick her up, there were no more hugs and kisses from my child, who for the first year of her life couldn't go a day without a hug or a kiss from her mama. She stopped eating and allowing me to feed her. She also stopped answering to her name, even when we yelled it as loud as possible, sometimes with the 3 of us yelling "ZOEY!" all at the same time. 

It was as if she went away and she wasn't coming back, no matter how much I prayed, and pray I did, every day and night. I wanted my baby back and I cried and begged God to bring her back to me. 

Zoey isn't my first child, she has a sister 16 months older than her. Yes, I have a 5 year old and a 4 year old...two toddlers. I know, I know! 

I also went to school for Early Childhood Education and I have been around children my entire life. I knew that Zoey was no longer hitting and reaching milestones and that her speech was delayed, and I also knew that I was scared.

You see Governor, my brain knew what my heart couldn't bare, there was something different with my child, and I needed answers and I needed to help her. 

At her 18 month check up, I mentioned the changes that had taken place with Zoey to her Pediatrician. And I watched as Zoey's Doctor evaluated her and called out my child's name, not once but multiple times in different tones, and my child didn't move, look her way, or flinch at all. 

 What followed next were 2 emergency hearing tests with an ENT and Audiologist, and the results were that her hearing was fine both times. 

It was at that point that I was told..."You should have a Speech Evaluation done." 

Okay! And I sprang into action. 

The Early Intervention team from Community Bridges came to our home, a physical therapist and an early education specialist. I sat down on the floor with these 2 women and Zoey, while my husband occupied our eldest daughter. 

 I was asked many questions and I sat there as they tried to involve Zoey in play and imitation, and watched as they tried to get her to make eye contact and engage and play with them and she did not. 

After the 3 hour evaluation was done, I sat there impatiently waiting for what they had to say to me about my baby! They talked about fine motor and gross motor, but that was not what I was sitting on the edge of my seat about...yes I knew she was delayed a bit in both fine motor and gross motor, more so her fine motor skills, but I wanted to know why my 19 month old daughter who at one point was saying "mama" and "dada" and "bye bye" was no longer saying ANYTHING at all, where did her voice go? 

 I waited and watched as this professional sat on my floor and looked at her paper reading what she had evaluated from being with my child and then she looked up at me and she started to speak and she said...

"she is a beautiful happy little girl" 

Then I heard a lot of things that I tuned out, because I could feel it and hear my heart literally pounding out of my chest and I could feel the achy punch down deep inside my gut, and I could see it written all over this woman's face.

"She has the communication skills of a 6 to 8 month old, but she is still your beautiful happy little girl." 

She said to me softly as if she were giving me devastating news, and in fact she was. 

I was sitting at the edge of my couch looking down at this beautiful baby girl and I could feel my heart quickly drop from my chest to my feet as I cried. Not just teary eyed cries you get when you watch a sad movie, but really big tears that I could feel dropping from my eyes like rain. These massive tears from my face covered my shirt in a pool of my own sobbing water. 

I looked at the woman as I cried and I said..."I'm so sorry! I know that must have been really hard to tell me, I'm sorry, so sorry."

 I got up and walked to get a tissue for my face and I heard the woman, who was visibly and emotionally upset whisper to her colleague..."that was really hard" and she was told "yes, but you did great." 

You see no one wants to give or get news like that!

After they left I got on the phone calling number after number trying to get an appointment for the diagnosis that these two professionals strongly urged me to get, immediately, as soon as possible, because Early Intervention is extremely vital when caught and diagnosed early. 

My child was not quite 2 years old and time was not on our side. In our state Early Intervention ends at three years old. Some states it's five years old, our state it's three years old and most children are not diagnosed until 5 or 7 years of age. 

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 vanished when I heard, “We’re booking appointments a year out.” 
I immediately burst into hysterics. I explained to her that "We don’t have a year, we need EI now and we can’t wait! She’ll be 3 and we won’t get the help that she needs 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 I begged for compassion and help for my baby. 

 
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.”  as I hung up the phone. 
 There is 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 was going to be my child's voice. 
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 and it was confirmed that Zoey does have level 3 autism, which is severe autism, which requires the most substantial support, she is also diagnosed with severe Sensory Processing Disorder, Global Developmental Delay, and severe ADHD with Dyspraxia of Speech with "no guarantee that she will ever speak."
My heart hurts for all of the children that are waiting and being left behind, not receiving vitally needed services. My heart breaks for the parents and caregivers that have to fight for services, quit or lose their jobs to be their child's full time caregiver, and I die inside when I see yet another missing autistic child or adult found in a body of water because safety and home modifications are denied to keep our children safe from bolting, wandering, an elopement. This is autism! 
Zoey was one of the lucky ones. Zoey was able to get Early Intervention Services for over a year, instead of waiting a year. Had she waited a year, we would not be where we are with her today. We had intensive in home therapies and she has worked so hard, but she still has so much more to go. Zoey requires 1:1 supervision 24 hours a day and she is a high risk for accidental drowning due to her disability. The leading cause of death in autistics from age 2-14 is accidental drowning. We autism families live in fear and are on high alert. So the need for Respite services is also something that needs to be worked on in our state. We parents and caregivers need your help to help our children. More awareness, acceptance, and funding is needed for the autism community and it starts with Early Intervention. We need to work harder for our children with autism, as they will become adults with autism. 
The need for Early Intervention is vital, our children should not have to wait and miss out on needed services, I hear from Moms throughout the country that they have missed out on services or that their state is eliminating or reducing services. Autism is on the rise, 1 in 45 children are diagnosed with Autism. Every 20 minutes a child is diagnosed with autism, yet there are still so many that are undiagnosed and that are waiting or are on "wait lists."
Without these vitally needed Early Intervention Services we are looking at these children growing up and becoming adults with autism. Autism is a lifelong neurological disorder. If we do not act now while they are young, these adults will have missed out on crucial therapies that could have helped them live a more independent lifestyle.
Without Early Intervention, we are looking at our state paying more money in the long run. Without Early Intervention Servives we are looking at institutions full of autistics that could have and should have been given the opportunity and the right to live independently. 
The need for Early Intervention is now and we shouldn't have to fight for it! Our children are struggling, we parents, caregivers, and advocates are fighting and struggling and we are tired! 
This is not a Republican issue, This is not a Democratic issue, This is a Human Rights issue. 
Governor will you stand with us and fight for what's right for all individuals, including the neuro diverse as well as disabled individuals, will you stand up for autism, can we count on you and your vote...please? 
I am writing to you as just a mom that wants what's best for her child and children like mine. 
Thank you so much for your time and I hope this letter finds you well 
My Sincerest Thanks, 
Melissa Cote