Saturday, March 21, 2015

"We strongly urge you to get a diagnosis"

 How do I sum up and explain what it's been like in our House the past year.  Some people have asked questions, some don't know what to say, and some are still in denial. It all started when Zoey was around 12 months old. She stopped answering to her name, even when we yelled it as loud as possible, sometimes with the 3 of us yelling "ZOEY." 

She also stopped making eye contact...I used to light up when I'd call her name and she'd turn to look at me with her big beautiful smile. She started pulling away from us, not wanting to be picked up or held. I couldn't just walk over to my baby and hug and kiss her like I had done many times in the past. 

Zoey isn't my first child, she has a sister 16 months older than her. Yes, I have a 4 year old and a 2 year old...toddlers, gotta love em!! I also went to school for Early Childhood Education. I've been around children my whole life. I knew that Zoey was not hitting milestones and her speech was delayed. My brain knew what my heart didn't want to know. At her 18 month check up, I mentioned it to her Pediatrician. I watched Zoey's Doctor call out her name multiple times in different tones, and my child didn't flinch!

 What followed next were 2 hearing tests with an ENT and Audiologist, hearing was fine both times. It was at that point I heard "You should have a Speech Evaluation done." Okay! 

The Early Intervention team came to our house, 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 4 year old. 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 with them. After the 3 hour eval was done, I sat there impatiently waiting for what they had to say to me about my baby! They talked about fine motor, gross motor, but that's not what I was on the edge of my seat about...yes she was delayed a bit in both fine motor and gross motor, more so her fine motor skills.

 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 "she is a beautiful happy girl" and then I heard a lot of things that I tuned out, because I could feel it in my gut, my heart, and I could see it written on this woman's face...then the words came out..."she has the communication skills of a 6 to 8 month old" and Zoey was 19 months old at that time!

I was sitting at the edge of my couch looking down at this beautiful baby girl and I could feel my heart drop from my chest 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, making my face and shirt wet. I looked at the woman as I'm crying 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 her whisper to the other therapist "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!

 I got in the phone calling number after number trying to get an appointment for this diagnosis that I was strongly urged to get. 

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.

Zoey has level 3 ASD, Sensory Processing Disorder, OCD, and Global Developmental Delay. 
Zoey has been getting Early Intervention Services for over a year, instead of waiting a year. 

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 their state is eliminating or reducing services. Autism is on the rise and has been for years, without Early Intervention Services we are looking at these children becoming adults that will have missed out on crucial therapies that could help them live a more independent lifestyle. Without Early Intervention this will cost more money on the states in the long run. The need for Early Intervention is now and we shouldn't have to fight for it! 

© 2015
Melissa Cote 

No comments:

Post a Comment