My daughter whispered to me at the supper table “maybe we can get Max something?” This was after I told her that April 2nd is Autism Awareness Day. Maybe she thought it was like Mother’s Day. If you’re a mom on Mother’s Day you might get flowers and breakfast in bed…if you have Autism on Autism Awareness Day you might get a new train? Something that spins, lights up, or cuddles you?
I told Max I wanted to write something to help people understand what the world is like for him. I went through a few ideas, but only one suggestion got a response. “Should I tell people if they give you more time to understand what they are saying or asking it will help you to figure stuff out?” Nod Nod…this IS one of the biggest pieces in our puzzle. The wait. Not just stepping back and waiting…but to be ok with waiting forever maybe. There will be those small moments where something HUGE happens and it becomes one of his major life steps …there will be displays of brilliance. There will be repetition. Sometimes we learn and kinda forget and need to start fresh.
Personally I LIVE for these routines. I adore that once I get to know how he likes a story read I just have to repeat it over the next few months or until something new takes over. It’s one of those FOR SURE things that make me happy and him happy and we’re all just one predictable story that allows us to connect and snuggle. Pretty good gig.
Every family has their different challenges. They learn what they are, they find ways to deal and succeed, they realize how lucky they are to have them. For in each challenge hides a bit of magic. You’ll discover it while you’re busy coping and conquering and doing your best. It will be hidden somewhere you never ever would have gone if you weren’t busy figuring out how to get through this world being the unique you that you are. You’ll feel stronger instead of weaker…and most of all you’ll realize the great importance of family and friends. They accept you and love you and will be there to lean on when the days out on your own drain you of your certainty. Be certain of this. You were meant to be exactly who you are. You were meant to bring your unique qualities into the world to inspire someone. My momma taught me this and I just hope I am teaching my kids this as well as she did.
I can only write about OUR story. I know how lucky we are to have a strong family unit and more moments of laughter than struggle. We know that autism DOES and WILL change things, so instead of forcing what we want we adapt it to make it work for him. We allow him to choose or give him time to come around to the idea of something he’s not instantly ready for. We’ve designed our lifestyle around Max. And me?
My hubby tells me all the time I am clearly on the spectrum. (no, he isn’t a doctor..he’s a pilot and from what I’ve heard it’s kinda the same thing hahah) Well, after this past year I started to see it too. OHHHH is this why I threw up everyday on the bus or at school. My incredible imagination, difficulty with certain light and motion, horribly strong aversion to certain smells, and fear of the unknown. Overwhelming sense of being overwhelmed? I can describe my day to day as feeling like I’m out there with my brain, ear drums, and emotional heart, exposed. OOOOO sensitive. Yes I am. I remember overhearing my dad say to my mom “She’s fragile, isn’t she?” Hmmm He could have said so much worse….how about…what a pain that she pukes everyday and has to be driven home by the bus driver or picked up in town.
He had a soft spot for me as I believe he was on the spectrum too. He would avoid social gatherings like they were a pitri dish of ebola. Then on the other hand would do exactly what a good social person would do if company came. Cuz even if things are really difficult for you, you can learn it and apply it. It can leave you feeling run over and upset. Yes, there are so many things that are worth this feeling. It’s a really big battle figuring it out moment to moment. I was lucky to have parents who loved and accepted me exactly for me. That’s love and that’s acceptance. They never tried to change me or “fix” me, just as I do not want to “fix” Max. He is my perfect son as he is.
Spectrum…what a wonderful term. Soooo many variables and so many variances. I laugh when I think about all the things that seem “funny” now that I’m seeing them through a mommy’s eyes, the mommy of a son with a diagnosis of autism.
I will never be assessed ….I have done the online quizzes…I score high on anything geared towards females with Aspergers….it’s actually comforting. At 40 years old it is so comforting to know that I don’t need to try so hard to “fit in”. I can be me. I can enjoy my quiet time. I can ask my husband to stop tapping the pen. I can be proud that I can’t lie, and I need to follow rules. I can stop forcing myself to look at people and give up discussing trivial stuff. I can avoid social interaction at all costs hahha. It’s me! I have Facebook…I love to connect there. I love people and I feel your joy and pain..I have an intuition that makes me want to blurt out things that will make you think I’m nuts. I do it now and then…I care SO much it hurts. I want to protect every child and underdog and lost pet. I wish I could never see a bad thing…never hear a bad word said to someone. I feel everything 500%…..it’s fabulous…and it’s draining…and it’s me.
I never ever would have thought about myself and how I fit into this intricate puzzle if I hadn’t had Max. Max is obviously very special. His incredible quirks made it easy for me. I didn’t go along as though everything was or would be fine. I knew so early on that hey something isn’t following the pattern I’m expecting. If he had eaten normally…if he had babbled and said momma…and then chattered like his sis. If.
I am so thankful that he has given me clear signs that alerted me to his special needs. I will always wrap him in my bubble wrap hug and make sure he is guided gently. Meanwhile he carries his poky wit and determination, popping those silly bubbles as he sees fit. I trust him to do it when he’s ready and I roll with it. I wouldn’t change one thing. I wouldn’t go back to my childhood and get any special help….because I got to see the world through my eyes…through my eyes trying so hard to see it through yours. Now I know how important it is …the most important thing for all of us is to be who we are… exactly how we feel, exactly how we perceive..to know it’s not only OK but required to follow our own drum roll. Wouldn’t it be great to know you weren’t in a world of people who were cooler and smarter and doing the right thing and you were awkward and unable to “get it” and not sure what the heck you were supposed to do in the easiest of situations??
My wish for reality. To live in a world where we all accept each other . Wow how generous. I accept you. I appreciate you. I would appreciate it if you appreciate me. Just me. Not the things you think I SHOULD do. Not the things you think I SHOULD be saying and thinking. Just me and my mind, and my ideas, and my wishes. Once you know someones story you realize so much. It may be things about them…it may be things about you. A little more understanding will shine a little more light.