Life is all about the ebb and the flow. No matter what a person’s circumstances, life inevitably ebbs and flows. We have been having a lot of ebb and flow in our home as of late. It’s part of our everyday circumstances. Nico is really in a state of “flow” right now which is making us so happy! I have always seen “flow” as the positive side to life whereas the “ebb” is the downside. Either way, nothing stays the same in our home for too long.
I’m trying not to hold my breath, but Nico has had some great moments lately so I am really trying to ride this wave of optimism. First off, he is using more and more language everyday. He is pronouncing words more accurately, reading more efficiently (while tracking with his finger which is an amazing early literacy skill…woohoo), and his echolalia has definitely decreased. The scripting is still going strong but as long as he is speaking I could care less if he repeats it multiple times a day. One thing I have recently introduced to his diet, after much research and positive reviews, is a new probiotic and I want to truly believe that it has been a major contributor to his burst in language. That was, after all, why I tried it out. For anyone interested in reading more about it (I am not a paid spokesperson or anything, just a mom who is seeing results), here is the website: https://myallstarnutrition.com/ He has also been having consistently great days at school. He’s focused more, listening better, and speeding through his target programs with ease. I am so unbelievably proud of Nico right now I could burst.
But, one of the biggest milestones we have been celebrating as of late (as if a burst of language wasn’t enough) is the fact that our Neeks jumped off our pool’s diving board and is fully comfortable submerging his head under the water! As a former competitive swimmer who lives for water, I was thrilled to the gills (pun totally intended) that my kiddo loved the water too. Nico has always gravitated to water, which can be a wonderful, yet terrifying thing all at once. One of the leading causes of death in the Autism community stems from drownings. However, it has been a labor of love to get Nico comfortable with being fully submerged. He wears puddle jumpers, but can easily navigate from the shallow to deep end with ease. He can swim on his back and tread water like a champ, but don’t try to get him to put his head in or jump off the side of the pool. My stubborn little cuss would refuse every single time….until last weekend!
After swimming all day in the pool and working with me as I pulled him under the water for brief moments at a time, I could tell he was itching to jump off that board. So, when we had our family over for a pool party and he constantly saw how much praise his younger cousin was getting as she jumped off the diving board (she recently started submerging herself too) he found the will to walk up to the board, make his way to the edge—he also counted to 3 all on his own—and JUMP off! My husband and I screamed and jumped to our feet with excitement and pride! He popped right up (those puddle jumpers are awesome) with the biggest smile on his face and said “hooray” to celebrate his accomplishment. He was hooked and proceeded to jump off the board at least 15 more times in a row! It was a great night! He slept like a rock too which was a plus! Now I understand why my Mom got me into swimming so early. She always said it helped me sleep. What she really meant was….it knocked me out and she then had some peace and quiet. Ha!
Ok…so that was our flow…here comes the ebb.
I shared the flow first because I work really hard to always find the silver linings in life, but with every flow must come an ebb. We also had Nico’s IEP meeting last week and my husband and I have been left with mixed feelings. Long story short, we are hopeful because we liked the staff and their eagerness to work with Nico, but what is scaring the hell out of us is the fact that Nico will not have an aid with him in the classroom. My son has only ever known a 1:1 environment and has had full support over these last two years with every therapy he receives. To think that he will be in a classroom with 20+ other students, one regular education teacher, and an occasional special education teacher—who will only be able to come to the class 2 times each week—makes me weak in the knees.
I know he is not going to receive a fraction of the attention and specialized support he receives now at his therapeutic day school and I am scared to death that he is going to go into sensory overload. He is still minimally verbal, can not communicate certain feelings and needs, and struggles with being surrounded by multiple people for long periods of time. How is his teacher going to be able to manage all of that while giving attention to the 20+ other kids who deserve her attention too? I was a teacher and even with a special education co-teacher I still had students whose needs were not met because it was virtually impossible to reach them all at the moment they needed it. It haunts me everyday that I couldn’t do more and I know for a fact now that I did have students on the spectrum in my room who needed much more than I could give them.
Nico demands a lot of attention. I wish he didn’t, but he does and so Kindergarten is going to be doubly difficult for him. I wish I could have sat in that room and demanded he have an aid, thrown out a bunch of legal jargon, and could have rattled off every law that applies to individuals with disabilities so that by the end of the meeting an aid would be guaranteed, but I simply have not had the time to study the laws and build a case. It makes me angry and sad and frustrated that I have to worry about things like this when so many others are just worrying about Kindergarten being a new experience for their child. I hate when the waves of resentment and envy wash over me, but I have been battling with it ever since we went to the IEP meeting.
And so when Nico had a rough day this week, I felt the fear and anxiety wash over me and it was suffocating. I even thought for a moment…”what if I just keep him at the Promise Center for Autism until they kick us out or quit my job and just teach him myself? He’ll be fine.” No…he won’t. That’s not a possibility. All I would be doing is making life that much more trying for him in the long run. I won’t be here forever and I have to teach him now what it means to work through his struggles, continue to persevere, and learn how to be independent. I am also going to have to trust. Trust Nico to continue to surprise us with how well he adapts. Trust the school to know what Nico needs and ensure those needs are met. Trust his teachers to have the patience and desire to want to teach my son. And, trust my strength to continue to carry me through.
I want so much to just live in a world where Nico can jump off diving boards all day, dance to the Trolls soundtrack (his newest music obsession), and read books to me because he is truly happy and content in that world, which means I am truly happy and content in that world. I just want things to flow for us.
This is what raising a child with Autism is like for us. It’s one of many hundreds and hundreds of stories being lived out by Autism families all over. I know we are not alone in any of this. I read blogs about children who hurt themselves physically everyday then turn around and smother their parents with kisses. Children who have not uttered a word for much of their lives then turn around and sing a full song, hitting every note and lyric perfectly. We are blessed in so many ways because we witness miracles and milestones that may go unnoticed to the outside world. We might have the hardest day of our lives, but all of that can change in an instant with a new word, a first kiss, or a moment of eye contact. It’s the ebb and flow that keeps us parents moving forward. Keeps us strong.
I know I say this a lot but it’s truly the mantra of my life: the struggle is real, but WE GOT THIS!