It's been one of those weird days where I have had so many emotions cycle through my brain that I cannot decide which one to grasp onto and which one to let fly loose. They are all just lingering in my mind and in my chest. My chest has felt tight and constricted on and off. There have been tears stinging my eyes, and my breath catches every little bit as I fight back the reaction I need to feel. Sometimes a girl just needs to cry, ya know? Men don't really understand this, it seems to baffle them. All they seem to want to do is try and fix whatever is making your eyes leak. It's sweet, but sometimes we just need a good cry. When life seems messy and unpredictable a good cry can make your entire perspective change.
Today we took our nearly 2 year old to a neurologist. We waited a while for this appointment. It was the appointment to rule out some things. You know, you go in and they look at your toddler and pat you on the back and say 'you are doing a great job! He is perfect.' That's what I always want to hear. That's the response all of us parents who are in the trenches of special needs want to hear. I don't know how this will come out. Probably in the form of word vomit. So brace yourself...or close this article if need be. I get it. These things get quite lengthy at times.
My crazy pants toddler is into everything. He is talking and he loves interaction. He loves trucks and the color yellow. He loves to throw a ball. He repeats stuff back to us amazingly. He just mastered the word "YES", and this pleases him immensely. He can climb all over the place. I mean you cannot take your eyes off this child. His hugs are my favorite. They can melt this mama's heart in an instant. He is my baby. But....there is always that damn but....he walks on his tip toes. He falls a lot. His little chubby legs have scrapes all over them. His shoes are so worn out from his tumbles and from his constant toe walking. It doesn't sound like a huge deal. I have heard so many people tell me about their cousin's kid who walked on their tip toes until they were 5 and golly gee they are completely normal. No big deal.
Except to this mama, it is. To a mom who has already navigated through the evaluations and checked the box next to 'Toe Walking', it is a very big deal. It is a red flag. When he started walking at 15 months I immediately noticed it. And in my head it was blaring lights and loud horns in my mind. That word. The word that no parent wants attached to their child, because it is so misconceived by others. It is a scratchy word, it doesn't come smooth when you say it. It squeaks out like a loose wheel on a bike. Autism. That word. The one that has already been such a huge part of our lives. It came with schedules and routine, medications, meltdowns, weighted blankets, appointments, therapies, counseling, battles with insurance. It isn't just a word. It is a monsoon of information and a spectrum so broad you can get lost just by a single google search. I have already been there. I have sat in a white room with a doctor we waited months to see and heard his voice squeak out Asperger's Syndrome. I have sat across from the pediatrician as she conducted the ADHD evaluation and discussed the medications available. I have been here before. I have felt this itchy scratchy word against my skin before.
Today was different. He is so young. The doctor just told us there was a high chance his toe walking is related to Autism, given our family history. Given that he has an older brother on the spectrum and that his other brother didn't speak until he was 4. He said it was very likely we would end up with a diagnosis for him in the future. I was prepared for this I thought. In the back of my mind I have known this was a possibility. I have watched him since birth for signs. I have said so many times that he reminds me so much of his biggest brother. They are so similar. His emotions are so passionate at times. But this hit me hard. I instantly felt my chest tighten and I felt the pressure under my eyelids. I could feel my reaction building up. Immediately I blinked my tears back, I repressed it all. I smiled and nodded and made a remark about how amazing his brother is doing now. How smart he is. It gave me a second to bring my emotions back into check. The doctor seemed to be finished with his spill. Get my toe walking toddler into physical therapy, and watch him closely for signs of ASD. Follow up with his pediatrician. High functioning autism isn't a grave prognosis. In fact, in this office it's probably one of the best ones to get. I gathered our stuff and folded up the report the doctor scratched up and crammed it in my goldfish littered bag. My husband, my rock through all of this, scooped up our toddler and we followed the nurse to check out. And that was that. We saw the doctor we had waited for. We came out without a diagnosis. We don't even need to come back unless we notice any regressions or signs of Autism. So why was I still holding my breath?
I texted my close friends who knew we were going to the doctor. My tribe of people know what we have dealt with in the past. They know how I have been called out of church because my child was freaking out because everyone else got a green crayon and he got a yellow one. A few have heard me try to calm him in the wake of a meltdown triggered by the busyness of a crowded room. Instantly, my phone started dinging with words of encouragement. It was encouraging to feel the support from my fellow moms. The ones who said they would pray for our family as we continue down this path. They tell me how well I have handled our other boys, this will be no different. But it feels different. It feels suffocating and unfair. When Eli was diagnosed I was a fresh new mom. I was ready to face whatever was thrown my way. Although, I was lost and had no idea which way to turn first. I had my adrenaline and enthusiasm to propel me through the muddy waters. Eventually, I found my way. And along that journey we fought for our other son. We had therapy appointments nearly every day of the week. They were filled with meltdowns, tears, power battles, arguments, and bargaining. It was exhausting. But I made it through them. We are down to almost no appointments now. The school takes care of a lot of things for my big boys. I just came up for air. I can finally feel the bottom of the ocean floor. For a while I had lost my footing and I was floating along, grabbing whatever floated by me to get me closer to shallow water.
And now here we have been thrown back into this deep sea of unknowns.
