When Big Man had been in the NICU just over a week, and it felt like we would never bring him home, his neonatologist introduced us to a family whose 26 week baby boy was just getting ready to go home. Dr. S wanted to give us hope, let us know it was possible, there was a light at the end of the tunnel. That was the first clue we had an amazing doctor taking care of our boy. I am forever grateful to him for that introduction. It did give me hope – hope that carried me through so many bad NICU days. Later, close to the end of our own NICU stay, Dr. S brought a new family to meet us, to let them know there was hope, there would be an end to their own NICU stay, that they could make it, and our journey was the impetus for their hope.
Then when Big Man was four, I found an online community for NICU families. I knew I had to make sense of his early birth, and one way to do that was to reach back, and help families just beginning the journey. I shared our story repeatedly. I was honest about our journey to that point, and the challenges we were still facing. It became a mentor-and-be-mentored opportunity…..moms with preemies older than mine reached back and helped me; I reached back to pull up moms with preemies younger than mine. We built a community, and some of my closest friends today were formed then. And among family and local friends, I am the bedrest/premature birth/NICU “expert”.
My days were dark when Little Man was first diagnosed on the spectrum. It seemed there was an entirely new language to learn, new processes to develop, a new routine to become acquainted with. I was overwhelmed. I was heartbroken. I was terrified. It all seemed too much. But once again, there were people in my life further into the autism journey who reached back, shared stories, gave advice, suggested resources and different therapies, and offered a shoulder to lean on. I still lean on them to this day, as they are still ahead of me on this particular path.
We are six years into this life on autism street. We have some experience under our belts. We know what usually works. We have our toolbox. We know what to avoid, when to push, when to hold back. We know we can’t parent him out of being autistic, but we can parent him through it. Do we have absolutely shitty days, as we’ve had recently? Oh heck yeah. Being an expert on MY autistic kid doesn’t mean we don’t still face many difficult battles and challenges.
Again, though, I feel a responsibility to reach back to those just starting this journey, to once again share our story, mentor, suggest, provide resources, let them know what we’ve learned and used to get to this point. In that reaching back, I find hope, and I find a purpose I can handle. It doesn’t make me happy he’s autistic, but it just helps me make a little bit of sense out of it. I wouldn’t wish autism street on anyone, but if we have to be here, we may as well help each other through it, right?