I have been MIA because it’s been a very hard road these past few months. So much good that has also been accompanied with a lot of stress. It seems like for everything good thing that has happened to one child, it has been five stressful moments regarding the other.
We are living in the moment regarding Josiah’s tv pilot, ” IntelliGent”, being accepted into its first film festival. We are excited about some upcoming travel. We are prepping to get a new book going and Josiah is excited about starting the fourth grade soon. What 8 year old is excited about school?!
While so many wonderful things are happening for Josiah, Naiyah is struggling. Naiyah is struggling with self-regulation and all the comes with that. I am struggling to get a diagnosis of autism. Our current health plan is beyond frustrating concerning my daughter and her behavioral issues. This has been a 2 1/2 year struggle, if not longer, that seems to have no end.
My sweet girl has had issues since the day I brought her home from the hospital. She has had sleep issues. She has scream cried. She has texture and sound issues. She lines toys up. She stims by spinning, jumping, going upside down and running back and forth. She also watches videos on repeat. My little once cannot be left alone or her inability to control impulses will get the better of her.
Naiyah presents daily as a child on the spectrum with ADHD and ODD(Oppositional Defiance Disorder). I have also started to see signs of anxiety and emotional disturbance. This little cutie came to me through adoption and I am not able to get a mental health background from the birth parents. My little ball of energy was exposed to a lot in utero as well. There will be more about our adoption journey in a later post.
With the amount of inequity in access to healthcare due to racism, biases, outdated testing criteria and stereotypes it’s been a struggle to have someone listen to me. Ive filled out the parent input forms so many times but they aren’t being taken into consideration. I have so many videos of her behaviors and voice recordings of her meltdowns and tantrums. Nothing seems to matter to these clinicians. The only thing that matters to them is that she’s “very intelligent, very social, makes eye contact, plays with her toys and answers to her name.” One word, MASKING.
It is a proven fact that girls present differently than boys on the spectrum. Children of color also present differently than the “classic presentation” that is used to determine ASD. Girls are good at the social aspects and their special interests are things that are deemed “normal and appropriate” so the extreme focus on those things aren’t taken into consideration . Girls tend to be more social with friend groups and then explode at home after dealing with the stress of masking all day. Because of this, clinicians are slow to diagnosis.
My girl and I are going through this as I type. She was evaluated last week and the clinicians decided that she’s simply dealing with ADHD. I STRONGLY disagreed and let them know why. I am waiting for an appointment with a mental health specialist that can help me with a diagnosis and treatment plan. I have very little hope and faith in my current insurance provider but they do cover autism related expenses for Josiah.
We shall see what the next steps are for Niayah in getting the supports that she needs. I pray someone finally listens to me, takes the videos into consideration and observes her in her comfort place to see how she truly behaves. This is all important because my sweet girl ALWAYS presents as the perfect little princess until the moment we leave the clinician’s office. If they saw the way she behaves at home they would change their tune.
