Month: January 2012

UGH! It’s so hard when your child struggles. It’s even harder when, as the mama, you have to tell your child one thing when all you want to do is scoop him up, hug him and tell him it will all be okay. But, that’s not always the BEST thing a mama can do for her son. Sometimes, she has to tell him what he NEEDS to hear, not what she WANTS to say. The eldest had a meltdown in class today. Why is basically irrelevant. He felt unheard. He felt un-valued. He is neither. But, that too is irrelevant. Sometimes, what we FEEL is more relevant than the TRUTH. Because while we feel unheard and un-valued, how can we hear the truth. It hurts my heart that I have to say, “Son, you CAN NOT behave that way.” “Son, you can not meltdown in class.” “Son…” Later, after the lectures have sunken in and we’ve washed the day away, I can hug him and tell him it will all be okay.

Dear Chet, I know that it is sometimes hard to be the little brudder, but know this: you are the best little brother God could have ever given Joe. You love him more than you love yourself, bacon and chocolate donuts with sprinkles combined. You help him in a way that mama and daddy could not. You have given him a reason to be social with kids. You help him know how to be. Beyond what you do for your brudder, you are special beyond words for being YOU. You are kind. You are FUNNY! You are sweet. You give the best hugs and kisses. You are smart. You are a social butterfly without caring what anyone thinks about you. If you ever get in trouble, it will be because YOU chose it. No one will be able to talk you into something you don’t want to do. You are silly. You love banjo at five. You love drums. You love Tom and Jerry more than Sponge Bob. You have eyelashes that already melt girls hearts. You stand up for what is right. You love God even when your brother questions his existence. You worry without letting it age your soul. YOU are special. Love, Mama

So, a month has come and gone. We are headed to Dallas later to find out what the craniofacial surgeon has to say about joe’s palate injury. I’m really struggling not to let the “what ifs” and “I should have done’s” plague my mind right now. We did what the doctor asked. I’m not a surgeon. I have to place trust in him and know that he knows what he’s doing. I just can’t turn my brain off…hmmm…could this be where the boys anxiety and worry come from?!? I slept with the boys all night last night. I always lay down with them, but usually I manage to make it to my room. I’m not sure who was comforting whom? Joe had his arm linked through mine until 3:00 am. Then I woke up. I know I have to keep a calm mind and body today as much for myself as for my family. No use in pondering if I did enough or should I have taken him to one more doctor or could THIS be the source of our year long struggle with fever or if he has to have an UNEXPECTED surgery how will he cope? It will be fine. It WILL be fine. It will BE fine. It will be FINE. My mantra for today. I know how lucky we are that we aren’t facing life-threatening illness. I remind myself of that daily. I still don’t like to see my boy struggle. I want what we all want for our children. Peace. Love. Comfort. Right now, though, what I really want for him is pizza! I know, you’re like, “what?!?pizza?!? This does not compute.” I can give him peace of mind. I can CERTAINLY give him love. I can even give him comfort. Really, those three things can be achieved through one hug. What I can’t give him is pizza. this soft diet is wearing thin on us all…especially him. So, here is to good news and pizza for dinner!

I don’t quite know what I expected when we received the asperger’s diagnosis. Perhaps, community? Understanding? Peace? I don’t know. It’s hard to feel part of a community when there is so much division and anger. One group says you aren’t autistic enough to be here…you don’t know our struggles. No I don’t. But, you don’t know our struggles, either. I mean this on the human level. How many of us know what it is like to walk in another’s shoes? None. Yes, my son is verbal. Yes, my son is gifted. But, you don’t see his ulcers from the anxiety he holds inside. You don’t see him when he has spent hisday struggling to contain stimms. You don’t see him when he is sad because he feels as if he has no friends. As HUMANS, we all want love and understanding. Because I speak of asperger’s it does not mean I do not want care about the autism spectrum at large. I do. I speak of what I know. Just as someone who writes about breast cancer doesn’t seek to diminish leukemia. We are all doing our best to navigate this world and form community. Perhaps, I look in the wring places. Perhaps community is closer than “message boards” websites and blogs. Perhaps, I need to forge a community of my own…