Had lunch yesterday with a friend from work who has a very young child recently diagnosed with autism. We go to a lot of meetings together but rarely get time to talk about all of our autism stuff. I am trying to help her navigate therapy, insurance, doctors, school etc. I am way more than happy to do this; it is part of my journey with autism to help those that come after me as I learned from those that came before me. I am happy to report that this Mom has it going on and is on a solid track with schooling, therapy etc. I tried to offer up some lessons learned and I appreciate the ability to offer my experience. If I knew then what I know now…
1. ABA, get it early and often. The advice back in Bryan’s early days was, “it’s so rigid, it’s so tough, let’s wait and see if he really needs it”. UGH UGH UGH. He really needed it!!!! Once we started with this we started seeing changes. If I could turn back time… shut up Cher.
2. Don’t sweat the small stuff-this is clearly easier said than done. When they are little you want to solve everything and you want immediate progress and you want every single thing that you are entitled to at that exact moment. When Bryan was little we wanted him to be mainstreamed, “cured”, etc. Experience and exhaustion teach you to accept your child as they are and pace yourself. The wheels may be moving in slow motion, but at least they are moving in the right direction. Chocolate and vodka both help; together and separately.
3. Never, ever, underestimate the power of unconditional love. Love them, love their flapping, pinching, biting, and yelling random thoughts and all of their autism. They need it and it’s ok to have a child that is different. You won’t die of embarrassment, and if nothing else, your priorities will clearly shift in the right direction.
4. Take notice!!! On Saturday sitting at Football Buddies I was reminded of how well Bryan is handling this activity. I know that he is doing better, but it’s always great to hear from someone objective that they noticed your child is making progress. Also listen to those whose kids are older than yours; they will tell you, “when my child was your child’s age he or she couldn’t do x or y and now look at them”. Hope is alive and well and living in your neighborhood, embrace it warmly.
The great thing about helping others on this crazy journey is that it helps us too. It reminds us of who we are and who we want to be. It reminds me to go home and shut up and give Bryan a big juicy kiss and hug. It reminds me to go watch silly tv with him and do playstation and Wii and embrace the 12 year old he is and not to mourn the boy he is not. It also jolts me out of anything I may be coasting on, like behavioral issues or school issues. Never shed your mommy/advocate cape, never rest on your mommy laurels.