When Life - Fighting for a Label

Labeling theory is the theory of how the self-identity and behavior of individuals may be determined or influenced by the terms used to describe or classify them. Labeling theory holds that deviance is not inherent to an act, but instead focuses on the tendency of majorities to negatively label minorities or those seen as deviant from standard cultural norms. A stigma is defined as a powerfully negative label that changes a person's self-concept and social identity.- Wikipedia

When I say I am a “Republican” you automatically assume some things about me. Perhaps you think they I am a gun owning, pro-life, Trump supporter. When I say I am a “southerner” you may automatically think I drink a ton of sweet tea and talk funny. When I label myself as a “Hot Mess Momma” you might picture me walking around Target, holding a coffee, wearing yesterday’s t-shirt and black leggings. These labels have allowed you to make some assumptions about me but are your assumptions about me correct? Labels allow people to judge you and make assumptions about you without even getting to know you. Labels are a way of putting people into a box. Labels, more often than not, are incorrect, unfair, and only a half truth.

This is me. Do I look like the republican you imagined in your head? Do I fit the southerner you imagined? What about the Hot Mess Momma? Is this what you pictured me to look like?

Now saying that, let me also say I have spent the last 4 years of my life looking for my son, Quin's label(s). I have spent hours on the internet looking for the label(s) that fit him. I have talked to countless doctors and asked them if XYZ label could be the one or if the ABC label was better fitting. I have kept journals looking for any sort of pattern that could provide a label. Why would I spend my time fighting to label for my child if I think they are incorrect and unfair? Because in the special needs world, a label opens doors, a label brings about understanding, a label starts the journey to main-streaming life, a label can bring healing.

When we first brought Q home, at the advice of our pediatrician, we found a doctor that specialized in Autism and Developmental Delay.  We immediately had him tested for Autism. We got the diagnosis that we expected but didn't want. "His test results show him on the high functioning end of the spectrum." Quin was labeled: Autistic. We were told that Q could also have RAD and that there isn't too much out there on RAD but that in young children the symptoms of RAD often overlap that of Autism and as Q grows older, we will see which one he has. Quin's Autism diagnosis was written up on some official form and distributed to his school and doctors.

This autism label was stuck to him like a name tag at a 10-year high school reunion.

Taken the day we got his test results. How can he be labeled anything other than perfect?

Honestly, there isn't much treatment for Autism. There is medication out there than can treat some of the behaviors and, as you know, we gave them a try. (Remember the medication roulette?) There is ABA therapy, which is a controversial topic in the autism world. Quite honestly, we decided not to go the ABA therapy route because we couldn't afford it. Insurance didn't cover it and they wanted $500 a week. Instead we opted for RAD therapy. We opted for this therapy for 2 reasons. 1) Because we could afford it & 2) To rule this diagnosis out and confirm the autism label. Our RAD therapist was downright amazing. She was honest. She was positive. She was loving. She was receptive. She was everything I needed her to be at that time. At the end of our time with her, 9 months later, she looked me dead in the eyes and said "Leah, Quin is not autistic. He has RAD." He was labeled: RAD. I knew in my heart of hearts that she was right.

I truly don't believe either of these diagnosis is better than the other. They're both a label. They both have special needs attached to them. However, the more I read on RAD and studied RAD, I knew 100% that the autistic label was wrong. I went back to that original doctor and requested new official forms be written up before Q started Kindergarten. I insisted that he not start "big kid school" mis-labeled as that wouldn't get him the therapy & services he needed. The doctor firmly disagreed and said "Not much is known about RAD, teachers and schools haven't heard of it. If we leave the autism diagnosis on the paperwork, you are more likely to get the services you want him to have."

I held my ground. I made my case why the autism label needed to be removed. I fought for that RAD label. Why did I care? Why did I want this RAD label so badly that I FOUGHT with a medical professional? Q was still Q no matter which label he carried, right? Honestly, it wasn't about the label. It was about the therapies, medications, and treatment plans. While the symptoms may look similar, the treatment plans look totally different. I wanted Q to start "big kid school" off with an IEP team that fully understood the child at the center of it all. I wanted to make sure we were all working towards the same goal. The right goal.

Since getting that old label removed and a new one put on, Q has acquired another label: ADHD. At first, I was in denial. I was excusing his behavior as "oh that's just the RAD showing." or "Gosh, he is all boy!" but I went back to my trusty ol internet and read anything I could find on ADHD. I joined FB support groups and read the posts looking to see if I related to them. I listened to the new doctor who gave us the label. I finally let go of my denial and moved on towards not only accepting it but embracing it. Q was labeled: ADHD. Why did I resist this label? Why didn't I trust a medical professional right off the bat? Why did I spend time in denial? Because this was another label on my child. Flat out. I just didn't want him to wear anymore special needs labels.

Everybody just wants their kid to be labeled "Normal". No mom wants their kid to be labeled the "weird kid" or the "special needs kid". Some moms may want their kids to be labeled "popular" but overall I think we can all say we just want our kids to be seen as typical so that they are accepted by their peers. When we got that autism diagnosis, it was a gut punch. I was devastated. Not because I couldn't see past the label. I knew I could. But could others? I just wanted him to be labeled "normal".

 It's funny how Leah and I met. We had been introduced on Facebook somehow and then not long after she came to one of my pop up events. She came straight up to the booth and said, "Hey, I'm Hot Mess Momma! Leah!" And the rest was history. 

We have been following and supporting one another since that day. One thing I can tell you is that us special needs Moms are some of the most loyal and supportive people you will ever meet. 

Thank you Leah for sharing a part of your journey with us. You are doing an amazing job with Quin! I am blessed and honored to be your friend.

If you are interested in finding out more about Leah, you can check out her website HERE. Or if you are interested in joining us in the Hot Mess Momma Club, come on over HERE. It's a Mom squad with a Stick to Kindness motto :)

Love and lemons,