I have always been very open and honest about Eli's struggles. I feel no need to hide them. His diagnosis have never hurt him. If anything they have opened doors to amazing things for him. Through each evaluation he underwent I was handed a piece of paper with a professionals name on it. Many of those names became conversations over the phone that turned into first office visits. Those office visits are what formed the village around my boy. They became MY village. The people that I automatically go to when I have a question. The people that I feel comfortable talking to about the odd things we experience. I am very open about my son's challenges. He has many. But he also has many many strengths. Today he was re-evaluated. He was diagnosed with Asperger's Syndrome around 5 years ago. Today he was diagnosed with Autism Spectrum Disorder, Impaired Speech Articulation, Coordination Impairment and General Anxiety Disorder. Guess how many of them surprised me? Zero. They are pretty much the same diagnosis he already had just in different text. All this means is that the school and insurance company will recognize his need for therapies and accommodations.
But for me this day felt like a victory. I left the building with a feeling of peace washing over me. This was what I needed for so long. When I would call and argue with the insurance over covering speech therapy and I kept hearing 'but his diagnosis is not coded as ASD' over and over. I needed this piece of paper to throw at them. Even though nothing about my child actually changed. He is the same child with the same exact needs, but now it is coded correctly. The crappy part is now the health insurance system is so broken that we probably will not benefit much from getting this. We will still have to meet a sky high deductible before any coverage is offered. BUT let's go ahead and count those therapy sessions that you are paying full price for off of your annual 20 visits. Tell me how that is even remotely fair? But I digress. I am moving on. I still needed this piece of paper for other reasons.
What I really want to talk about is the journey getting here. How it was challenging and seemed impossible at times. I remember days where I did not think I would ever see my son succeed in a classroom. I remember going to birthday parties and seeing my baby completely fall apart because the party did not go in the correct order of how he had in his mind. I remember holding him wrapped in a heavy blanket and rocking him in an empty room of a church because he didn't get a green piece of paper. I can still feel the stares of adults in the movie theater when he had a sensory overload. I remember holding him when he was falling apart and had no control over it. I remember the look in his big blue eyes when things got too heavy and too loud and too busy. I could see the explosion building. I tried to calm him in those moments the best I could. I wish I could go back to my 23 year old self and just hug her and tell her how amazing her little boy was. How brilliant he would turn out. I wish she knew that most people that know him now will compliment his manners. That most adults find him absolutely fascinating. I wish she knew that all those moments had a purpose. All of those judgmental stares and shaking heads helped build a rhino skin she would need to keep fighting for her little boy. I wish she knew that the meltdowns, while hard to endure, were there to teach her and that she would one day recognize exactly what caused them. I wish she knew how strong they both would become over the next 5 years.
I know our journey is far from over and there will be some very hard days ahead for Eli still. I hope that I can just remember to keep fighting. Keep fighting mamas! Your babies need you to be their voice in all the chaos they are experiencing.
