We now have a new website. Exciting, huh? I’ll post over at http://http://www.autisminourhouse.com from now on and post the links here. As of now, there is no new content and it’s a work in progress so be patient with me.
Today started out bad. The kind of bad where Big Brudder wakes up at 4 am full of anxiety about an upcoming field trip and can’t get back to sleep. I agreed to walk him in to school so that I could visit with his teacher about it and give her the low down about the bus anxiety.
Big Brudder is becoming increasingly anxious and whiny as we walk down the hall. I tell him that I won’t be able to walk him in anymore if this is how it’s going to make him start his day. We’re both exhausted; we are all too aware of how raw exhaustion makes our emotions. Especially if you are an already emotional person and it’s the full moon…
As I stand in the hallway talking to Big Brudders teacher, I peak in the door. Big Brudder has crawled under his desk. This is his go to place when he is overwhelmed, so that’s not a surprise. What I saw with him made my heart break and smile all at the same time. There on the floor in front of Big Brudder was a girl, sitting with her arms hugging her legs. Talking so kindly and gently to him, no exasperation in her demeanor. Also there on the floor were two other kids, clearly listening to what my boy had to say.
I am so thankful to have been witness to this moment. Big Brudder feels alone and nothing I say or do can change that, but knowing kids care about him and for him makes me happy. My wish is that one day, sooner rather than later, he can feel the love, accept the love and put it in his pocket for another day.
This post originally appeared on autisminourhouse.blogspot.com
A Letter To Big Brudder
Not too long ago, I shared a story about the Wee One and a conversation I had with him in a moment where he wasn’t doing so well. Today, I’m sharing a letter to Big Brudder.
Ten years ago, you came to us, this tiny little bundle with your wide smile and knowing eyes. You melted our hearts. To this day, my favorite story is that of mama’s best friend coming to see you the day you were born, holding you, looking at your face and saying, “Does he have a birthmark or something so you know they don’t give you the wrong baby.” I looked at her and smiled and laughed, “you mean something other than his cleft lip?” That moment is perfect to me because she looked at you and loved you and saw you in your perfection. Because you were born perfectly.
A few short months later, we said goodbye to the wide smile we’d become so accustomed to. I never knew how hard it was to hand your child over to a surgeon. I will never forget those hours you were in surgery having your lip repair. Never. I’ll also never forget the other times I’ve had to hand you over, sometimes screaming and crying, to the nurses who would hold you and care for you in the surgical room.
I will never forget the way when you were a teeny tiny baby you would look around, seeing the world, exploring the world with enthusiasm and care. I will never forget the way you always had to figure things out before you would play with them. I will never forget the way you loved bugs and had to know everything about them. Then came plants, trains, dinosaurs, pokemon, all things aquatic. I will never forget you thirst for knowledge, your love for your family and animals, and reading. I will never forget you walking with the speech pathologist to your appointment and when she said with astonishment “I have heard all I need to in the walk from the waiting room to the appointment. I’ve never heard an 18 month old with this kind of vocabulary.” I’ll never forget at the same appointment, her being equally astonished that you knew your alphabet by sight and the letter sounds and that you could read small words.
I will never forget the first time I asked the pediatrician about Autism. “He’s too social,” they said. I’ll never forget the years we struggled with food aversions, “He’ll eat when he’s hungry,” they said. I’ll never forget the years you had fever of unknown origin. “He looks so healthy,” they said. I will never forget every time you have persevered “He is a survivor,” I said. I will never forget the day I decided to ask for an autism evaluation through the school, “But he’s doing fine,” they said.
Here we are. You are a freshly turned ten year old boy who has the rest of his wonderful life in front of him. I can count on one hand the number of times in your life you’ve ever said, “That’s not fair.” I can not, however, count how many times you’ve said, “I love you” to someone. I can not count the number of ways you’ve made my life better. I can not count the ways that you amaze me. I can not count the number of times you’ve made me proud. I know that no matter what you decide to be when you grow up, you will have the drive and determination to make it happen. So many people have the luxury of walking through this world with no real challenges. You? In your ten short years, you’ve faced more challenges than I have in my lifetime. But with each and every challenge, you learn, you grow and you survive. Because of these challenges you’ve already conquered, you are ready. You are ready for more. You will face them head on, with determination like no other human I’ve ever known, and you will come out on top. I know this. I can feel it in my bones.
You, my love, are my heart. You are special. You are amazing. You are YOU. My hope for you is that you remember these things. That you hold on to the sense of self you have now. I hope that you remain true to yourself and your convictions. I hope that you find your people. Finding your people makes this life so much more bearable. Find the ones who love you not despite your quirks, but because of them. Find the ones who love your sense of humor. Find the ones who love your mind and your freckles. Find the ones who don’t mind you aren’t sporty, the ones who you can talk about books and art and documentaries with.
This post originally appeared on autisminourhouse.blogspot.com
Birthdays in Our House
These beautiful babies are about to turn ten and eight. This brings me to a time of serious reflection. I’ve been watching the endless slideshow of photos on our computer, sobbing, remembering, loving, feeling grateful, all those emotions and more at once.
It makes me remember our constitutional towards an autism diagnosis for BigBrudder. You may or may not know BigBrudder was born with a cleft lip and palate. We thought this would be our primary area of concern for him. For a long time it was. It still certainly occupies quite a bit of our parental thoughts and concerns, but little did we know that autism would become our main focus.
BigBrudder from very early on only liked to be held in a certain way. I would describe it as snug. He loved being swaddled and held firmly. He was always alert. Looking around and sometimes through you it seemed. He progressed normally and hit his milestones on time, mostly. Except language. Here he was hyper verbal. He didn’t really babble much, perhaps because of the speech therapy he received for his cleft lip and palate. Or, it could be that we didn’t baby talk. He spoke in complete sentences and loved showing what he “knew,” which was a lot.
Beginning at his two year well check, I asked every year about autism. He was a toe walker, he had a compulsion about lining up his toys a certain way, he would get lost in his own little world for hours at a time and not hear us, his food aversions were severe, and the meltdowns…they could last for days. I was told every year “He’s too social.” They didn’t see him at home. Yes, he interacted with us, but it wasn’t reciprocal. Until we had the WeeOne.
The other day, the WeeOne was in the midst of a rough patch (thanks full, super, harvest moon). We talked through it, and then I told him this: “You know how BigBrudder sometimes (okay a lot of times) seems lost in his own thoughts. Well, when he was almost two and you weren’t quite born yet, it was much more severe. We could call his name, we could talk to him and it was as if he couldn’t hear us. All of that changed when you came in to the world. Suddenly, BigBrudder was connected to someone in a way we hadn’t seen yet. He loved you more than he loved anyone before. I tell you this not to give you a burden but a gift. That is how much you are loved.” The WeeOne had tears rolling down his cherubic cheeks. I said, “Baby, what’s wrong?” The WeeOne Replied, “They are tears of joy. I want to tell this story to BigBrudder.” To him I said, “Baby, this story is for you to hold in your heart. Hold it close now and always. Remember it when BigBrudder doesn’t seem to be listening. You are his best friend, forever.”
Happy Almost Birthday, my loves.
This post originally appeared on our blog: autisminourhouse.blogspot.com