autism

My little

by donna
Writing this blog is a trip down memory lane. I remember the good, the bad and the memories that lay somewhere in between. It seems I have many memories of Nikki, Donny and Catie together and then singular memories of Brian. For some reason there isn’t much overlap, almost like a chunk of time is missing from my psyche. Most of my memories of Brian start when he entered kindergarten –other than vivid memories of carrying him around everywhere (best arm toning exercise ever). Truth be told Brian was born in the midst of chaos. He was born in December of Donny’s first grade year and that is precisely when Donny’s struggles were taking on a life of their own. His delays were becoming more and more obvious and I could see kids moving forward and away from him. I had visions of how his future was going to look as school progressed and I didn’t like what I saw. My role as his mom was taking on many facets for which I was not in any way prepared. I spent a lot of time trying to explain to others his behavior but that was a very difficult task when I didn’t understand it myself. On top of all this I also had a preschooler and a fourth grader. A full plate for sure and I was overwhelmed. I think my brain went into self-defense mode leaving some hazy spots in my memory.

Many autism moms have probably experienced something similar as part of their initiation into the least sought after but fastest growing sorority around: the sorority of Isolated Autism Moms (IAM). I recently had the experience to act as a “big” to a recent initiate into the IAM sorority. My “little”  if you will, is going through a very hard time. I went to her house to offer her some much needed support. I couldn’t offer her any solutions to her situation because I haven’t figured that out in my own world but that was not the intent of the visit. Like a good “big” I offered her my unconditional friendship and told her I’m here for her. I told my “little” nothing can phase or shock me, and nothing needs explained to me. I will never think less of you as your child spirals out of control because I’ve been there. I shared with her some of my stories and battle wounds so she would know that I’m qualified to be her big. I will take her under my wing, show her the ropes and hope my life experiences can serve as a rough road map to her. I’ve missed being a big sister, here’s my chance to help someone. True gratification comes from within and helping this young mom  actually filled my heart more than hers.

When I left her house I cried. I saw pieces of both my sons in her precious nonverbal child. I also saw my younger self in her — the younger self who just wanted her worries to be like the worries of other moms. I wanted to be thinking about whether or not my son was going to make the travel baseball team. I wanted to sit through the presentation at Open House in the fall and have the curriculum actually pertain to him. It wasn’t much fun pretending it did while holding back my tears. I eventually stopped going. Like I did many years ago, this young mom now faces much more complicated worries, and she recognizes the road ahead is going to be rough. I felt her pain, witnessed her confusion but mostly I saw her unwavering love and devotion to her son and the desperation she felt trying to make hard decisions. Through my tears, however, I thought — what a lucky little boy. They will be okay, she will see to it. She will most likely keep readjusting her dreams like I did. My “little” can do this….she will surprise herself.

Someone very intelligent recently said to me…..why bother writing unless you are being authentic, so that is how I want to write my blog. I am striving to be honest yet positive. Dwelling on the negative is counterproductive — just as it is counterproductive to create a false depiction of reality for the purpose of sounding positive. Getting it right is my biggest challenge. The thread I’m trying to weave through this post is that you can always find a friend. Someone can move into your neighborhood and become your rock which is what happened to me years ago or you can meet your new bestie in a learning support classroom. Your Thursday evening bunco gathering can turn into your own personal support group if you let yourself get there. Shutting people out is easy to do as your path takes you further from the norm but in the long run will only make life more difficult. Take it from me…not a good idea. Good people are out there and they appear when you least expect them or they could have been at your side all along and you just were too distracted to see it. The autism journey will no doubt separate you from your friends because circumstances will demand it. While you are taking your child to therapy your girlfriends are taking their children somewhere else much more fun. Sadly, it’s just the way it is. But those same circumstances have allowed me to make friends with some of the most caring people I know like bus drivers, aides, therapists and teachers. These are people I wouldn’t know otherwise. Thankfully, someone has always appeared in my life at the darkest times and pulled me through.

Obviously, the sorority of IAM doesn’t exist in the formal sense, but quietly it has evolved and is very real. All autism moms are welcome and for the convenience of the newest members we have a rolling admissions process and no weekly chapter meetings. The socials aren’t scheduled on a regular basis as they usually come to be when someone is at the end of their rope. It’s no surprise that our philanthropy is autism awareness. Finally, there is no financial obligation because for God’s sake you’ve already paid your dues