When there is so much to be grateful for, the bitterness can still seep in. When you are truly happy, excited and proud of all the achievements, bitterness still tinges the elation. This happens in all sorts of circumstances, and almost always, it hits you unexpectedly.
Proud of the fact your kiddo said a new word, but his older brother made a friend, they are not far apart in age, they should both have friends, but that is not the life we live.
Speaking to a dear friend today, about many heavy subjects, I was so pleased to hear her young son diagnosed with ASD speaking so well, fluently explaining where a marble had rolled under the refrigerator. Tears came to my eyes as I felt all the feels. The amazement of his achievement at only 4 years old, non-verbal only a year ago. Excitement that he is growing and thriving, getting the supports and developing faster than I had thought he would, based on my incorrect benchmark of my own son. Relief for her, for him, for the future.
Then it hit me. The sadness. The jealousy. The why not my kid?? Why is it still such a challenge for my boy to explain something complex? Why can’t I have a conversation about anything…my boy is 10. He is still struggling with words yet his communication is to be celebrated!!! Non-verbal diagnosis at 3, he can say his wants and needs, he can express what he is feeling. Spontaneous speech is emerging, but it is far from fluent. It is not on demand. He does not have a friend. Not one. In fact, he really does not get a long with the other kiddos in his class. He struggles with the kids he interacts with that are neurotypical for obvious reasons…but he wants to. He wants to be a part of them.
And it all stings. Watching another child, even a child with Autism, sail past my son, go beyond his capabilities. It hurts. This is grief.
I try to remind myself of all the progress, of the things they thought he’d never do that he excelled through. He is smart. He can read. He can do math. He is present. He is affectionate and empathetic. He is amazing. And yet, it stings.
It stings because, one day, hopefully a long way off still, he will be on his own. In a group home probably. He will have support staff. Roommates he will surely not like, maybe his brother will visit, I hope! But he will be alone mainly. He will not have the love he has now, surrounding him, cushioning him from the world. No one will ever love him like his family. Like me. No one will see the brilliance, the purity, the light within. That is the fear I sleep with each night. What happens when I am gone? Who will love him?
Author: Vic.E.
I am a Mom. I am a Caregiver. I am an Advocate. I get paid in unconditional love, in progress and by the amazing support of my very hard-working husband who is the greatest Dad to our two boys.
Our first child came in 2011. He was orange haired and big, 9.5lbs…yikes! He was a butter ball. Just perfect and delicious! His eyes came out green like Momma’s and his skin tone white with freckles like Dad’s. He will be taller than both of us, over 6’ according to the trajectory of his health chart! He has his great grandfathers build. He is smart, has an amazing memory, is super creative, and is sensitive, so empathetic. He is my first born and just perfect. He is also diagnosed with Autism-mild, ADHD, Anxiety, dyslexia, possible dysgraphia and possible other things…really, just all things to help him get the supports he needs to thrive in life. At his core, he is who he is. Full of silly laughter, big smiles, a warm heart, intense loyalty, a strong justice gene, and a fundamental belief in the good.
My second and last child, was born in 2013. The boys are a year and a half apart. He was born looking like an old man. Poor kid was induced early, for fear of another large infant and my ignorance I had a say. He had the umbilical chord wrapped around him and was blue as can be. He recovered fine though, no need for oxygen or anything. But he was checked on a lot to be sure. His skin would be tan like mine, but he won’t go outside much in the daylight. His eyes are closer to Dad’s and his Gran’s (my husband’s mom)…hazel green/dark blue. He has moles rather than freckles, but other than the should be darker skin and moles, he looks just like his Dad. A little mini-me of my husband. Same sandy dark blond hair, same darker eyes, same features. His body is more like my husbands as well. However, he is due to grow over 6’ and will most likely be taller than his big brother! He had a level 4 tongue tie. Something I thought would stretch and break on it’s own. I was a naturalist momma. Keep those sharp objects away from my babies!!! He was able to nurse just fine, and we got to take him home. He was diagnosed first, his symptoms were classic…development fine and then massive regression. He was around a year old when we noticed. The doctor at my other son’s check up saw it, and referred us to an “evaluation” which I did not understand at the time. Anyhow. He is Severe-Autism, ADHD, non-verbal. Although, 10 years on, I don’t like that term for him. He chats all the time, mostly scripts, mostly needs and wants. Rarely anything novel comes out, but when it does it is brief, but magical!!! He progresses every day.
My life went from social to isolation pretty quick. Other’s noticed the differences with our kids, my youngest was unsafe to take out for years. So, here are our stories. Jumbled up, in reflection, looking forward, retrospective. I try to write about our progress, our hopes and show the raw side of living a life in a house of neurodivergence. You are not alone, we are many. It’s time we showed ourselves to the world and stopped hiding our kiddos away. They deserve to be celebrated, included, loved.
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