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
Hi Melissa,
ReplyDeleteI love this blog! I wanted to talk to you about reposting this on my website blog, https://TheBehaviorStation.com. I think this is a very important message for medical and service providers, and I would be honored to share it.
I became a Board Certified Behavior Analyst (BCBA) because I have family members diagnosed with autism, and I truly believe they are "different, not less." We are all different, regardless of whether or not we have a diagnosis. We all deserve the best, and people with diagnoses are no exception to that. I have chosen to spend my career working with people with autism and developmental disabilities to help them reach their maximum potential, because every one of my clients is someone's family member -- and I know what it is like to be that family member. I would be thrilled to share your blog as it advocates for this message; no person should be treated as "less than."
Please let me know how I can contact you, or email me at Tiffany@TheBehaviorStation.com.
Best,
Tiffany N. Kilby
hi..great blog..we've been through 4 neuros. We now see a research doctor at Texas Children's Meyer/Blue Bird Clinic. Great doctors there. My son has SYNGAP and sounds similar to your little girl. Has your little girl had the Whole Exome DNA test? Many gene mutations have been found to cause these symptoms, SYNGAP being one. Check out our foundation website to find out more about SYNGAP. www.bridgesyngap.org
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