Despite Nate's quirky behaviors and my suspicions of a disability, our family didn't get an official diagnosis of Autism until Nate was 8 years old. When the psychologist told us his findings, my first reaction was tears. For two reasons.... 1) I wanted to know if my son could feel my love and feel love for me... (which he can and does, by the way) and 2) I was so relieved to have my suspicions finally confirmed... I felt.... justified. I called Matt and we breathed a sigh of relief together. Now we would finally get help.
But then something weird happened. When we told people - our family and friends - they told us how "sorry" they were. And we were, like, "huh?". We were also told that we would now need to grieve the child we lost and learn to know our child in a new light. But here's the thing... we'd been living with Nate and his disability for eight years. Nothing had changed for us except that we will be getting extra school funding and some good resources to pull from! Yahoooooo! But so many people were very sorry for our diagnosis. And I get it... you definitely wouldn't want it to be you, right? And we wouldn't have chosen this for our son either. Even though we greatly appreciated the condolences, we were just happy to have confirmation and it renewed our passion in helping Nate.
After our diagnosis, I dove in head first at learning about our new funding, getting help for Nate in the school system, looking for new therapies and professionals that could help him, and educating others on his disability. I poured my heart and soul into our family... learning to parent differently, carving out one-on-one time for Arielle as this disability can be overwhelming to the "other" child, and trying to find ways to connect with my husband. And some very good things have come from this.
But, now.... two years later... I am grieving. And it's not grief over a child I've lost but rather a distinct grief over how Nate's life is "different" than that of a typically 10 year old boy.
Lately I am intensely yearning for a "normal" life....
The one where my son could play hockey instead of attend occupational therapy.
...where we could go to the ocean while on vacation and not worry that the texture of the sand on Nate's skin will be overwhelming and we will have to turn around and leave.
...where he would bring home a non-modified report card and I might just see an "A" somewhere on it instead of the report card that doesn't have grades. Because if there were grades... they would all be "F".
...where little girls thought he was cute and maybe, just maybe, they would fantasize over marrying him one day.
...where I didn't have to worry about whether the girl he loves will adore him just as much and will treat his soft, sensitive soul with compassion.
... where I didn't have to worry about whether or not he would be able to attend the emotional needs of his wife. Or will he even have a wife someday?
...where I could join in the conversation with the other moms about how busy their sports schedule is and maybe we could get together and drink wine while planning the next home tournament.
...where my son could try out for the basketball team and I wouldn't have to worry that he may not even make it through the gym doors because the noise of the bouncing balls is too loud for him. And that the coach might give him some feedback that he doesn't understand and he refuses to ever go back.
...where I can let him play with other children and not have to worry that he may not be able to regulate his emotions which could lead to him hurting another child... where I don't have to supervise him the way you do a toddler.
...where I don't have to watch other children laugh at something quirky that he says or give each other a knowing look of "wow... that kid is so weird".
...where I don't have to worry about his future... will he go to middle school or will I need to homeschool him? Will he be able to get a job?
...where I don't live in a world where I am revving at 100% all of the time. It's been said that autism moms have stress levels similar to that of a combat soldier.
...where I don't need to constantly worry that my daughter is lusting for attention... and that someday she may seek out that attention in a way that would break my heart in two.
...where I didn't wonder if we would have visits from family often if they didn't feel awkward interacting with Nate.
...where I don't have to take my son to a psychiatrist for his depression and anxiety. And I don't have to worry about the suicide rate in children with his disability.
...where I don't have to care about statistics like the 80% divorce rate for parents of children with autism and whether this is true and how we will fight to be the anomaly.
I am grieving the life with children that I never had. It has hit me like a sudden storm on a sunny day.
Writing is my therapy. And I will come through this... I always come through. But right now... I am going to dwell in my grief as long as it takes until I can move forward in a healthy way. Here I am... sitting with these feelings. As ugly and awful as they may be. And then, when I'm ready, I will be optimistic again.
