Sunday, January 27, 2013


One of the most important things to remember when you have a child with autism is that they will only be a part of the community if you give them that opportunity. I remember how hard it was to take Chandler anywhere when he was three. Screaming meltdowns didn't make me want to take him to the gas station, let alone a restaurant or shopping place. I talk to parents with newly diagnosed children often, and it is a source of anxiety and panic for the parents as well as the child. And then, in mid turmoil in a public venue, you feed off of each other. The vibe you're giving off lends itself to your child and you meltdown together. I forced myself to breathe and work through episodes calmly for years to get to where we are. Take them anyway. Again and again. And again. Movies took me 13 trips, coffee shops about 10, and every other place along this journey countless, countless attempts. Do not say "My child can't handle this." Say "My child can't handle this today." And then try again. Today, we went to a coffee shop. We can do this easily now that he's ten. We order coffee, milk, and a chocolate chip cookie. We sit with my family and he only gets angry one time when our conversation gets animated, he covers his ears and yells. All I need to say is "I'm sorry we are being too loud." And we quietly resume. I see him watching the conversation when it's quiet, and he begins to lean in to me and hug me. Smiling he says "Hi.", and "Nice." I don't care that he is wearing his pajama pants, or his Cracker Jack T-shirt that is indeed inside out and backwards, but he did it himself. If people can see that you are anxious about your child, they will be too. I'm not saying let your child do what he or she wants in public, but if all the issue is, is simply a little stimming, some pjs, or an occasional yell...? This IS your normal, show everyone else that too.

Monday, January 21, 2013


I am the only person in the Dairy Queen Drive through tonight. It's ten below zero without the windchill. My suburban was pissed off when I started it. I am ordering three cones, and a milkshake. Though, he loves cake, we don't do cake for Chandler's birthday. I don't remember when we started this tradition, but we have to get DQ soft serve cones (Except Elliott who only will accept milkshakes with NO cherry on the whipped cream, he's my ultra clean child and cones are too drippy). We sing happy birthday in the car and Chandler giggles. I tear up for the tenth time in a day, and we drive home singing along to Ho Hey by the Lumineers. "I belong with you, you belong with me, you're my sweetheart..." I love this song. I love a lot of songs. Lyrics freak .com is in my favorites on my laptop. There are something about quotes that strike nerves in us parents that have kids with special needs. I see my autism parents constantly pinning them on pinterest, posting them on facebook. Inspirational, deep, or quippy things that grab on, then let go. Over and over. Most recently, one resonating with me is "Not all that is broke needs to be fixed....". This is true. We don't need birthday cake and candles. But why can't I always remember that it's okay? I don't think of my child as "broken", but I do see our situations that way at times. Having pizza one day a year with my ex husband, and we both try to get Chandler to play some games, and I try HARD, I tried to get him interested in air hockey. And his dad beats me 6-1 because I'm terrible at air hockey.  But when we quit trying to make him play, he began to laugh at us playing, and finally I give him the whole cup of tokens to shoot missles at sea planes, which is what he has taken to doing. I sit on the floor, and just enjoy him. That he is pleased. His dad buys the ball he wants instead of us trying to score 500 tickets for it, and its all fine. It's always fine. No need to force it, or fix it.
 Today is Chandler's 10th birthday. Ten. Double digits. Worry floods my thought process... middle school, puberty, guardianship, wills...I squeeze my eyes shut, and breathe. Let go Nicole, just LET GO. None of this is happening yet. Yes, your son is getting bigger, stronger, and you have days when the fear won't lessen, and when you want to protect him with everything that you have. And that can still happen. But there are these moments of clarity, when you realize that you are doing everything you can. And if you just sit back, and enjoy your child for the person they are, you begin to build a stronger love, a better bond. I don't have to do anything but be his mom, and that's enough. These last beautiful, hard, lesson-filled ten years I wouldn't trade for anything. Here's to the next ten....Happy Birthday baby. I'm so lucky to be your mom.

Tuesday, January 1, 2013

The New Years Resolutions I always make...

I cannot take the stimming tonight. It's loud, and its continual. I am downstairs trying to watch a movie before I go to sleep. Some days his stimming overwhelmes my nerves. I feel like a terrible mother when I can feel my temper, and blood pressure going up. When I want to yell shut up! I don't. But the incessant banging on his bed. The anxious feeling that the neighbors might yell at any second, or knock on the wall, or come to my door. He's making that sound with his mouth like the girl in the movie The Grudge. He's making joyous noises, and I think if I just shut his movie off the overwhelming stimulation from it will help him quiet down. It doesn't. He keeps turning a new movie on. The complexities of wanting to hear your child's voice, and wanting to hear silence is almost too much. I want school to start again so bad I can hardly stand it, and tears stream down my face again. I feel bad he is keeping his brothers up. I feel bad that I can't help him.  I think Gweneth, his therapy dog, feels bad she can't help him either. So her and I sit and continue to try to watch the movie, with the sounds overhead breaking into the only two hours I have left before my fitful sleep. I had someone tell me that I don't take care of myself. I don't. I think I do, but then I just sit here. I'm too overwhelmed to do anything but cry right now. I am making a point to make an appointment for a massage. And I am going to make the new years resolutions I always make and that's 1) to get organized. Lists. Shelves, rubbermaids, whatever it is. And 2) to eat better and work out, and 3) to take more me time. (insert eye roll, or laugh, or crying here). I need to make resolution 4) Do not bite off more than you can chew....And now, for those of you who don't know....A lesson on stimming: Enjoy!

What Is Stimming?
Stimming is repetitive stereotypic behavior commonly found in autism, but also found in other developmental disabilities. This behavior may involve any or all of the senses in various degrees in different individuals. Several examples are listed below.
Visual – staring at lights, blinking, gazing at fingers, lining up objects
Auditory – tapping fingers, snapping fingers, grunting, humming
Smell – smelling objects, sniffing people
Taste – licking objects, placing objects in mouth
Tactile – scratching, clapping, feeling objects nail biting, hair twisting, toe-walking
Vestibular – rocking, spinning, jumping, pacing
Proprioception – teeth grinding, pacing, jumping   
All of us engage in some of these behaviors occasionally, especially when we are stressed. However, your child may engage in these activities excessively so that they may interfere with learning or activities
of daily living. Individuals engage in stimming
as a way to self-regulate sensory input and manage sensory integration dysfunction. These behaviors may be excitatory (stimulating) or inhibitory (calming) with the result of normalizing sensations.