We now have a new website. Exciting, huh? I'll post over at 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.
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.
You, Big Brudder, are destined for great things. I can not wait to watch you go and get them.
I've been thinking about the different friends I've had in my life and the role each friend has played and then either moved on or stuck around for the long haul. I'm lucky to have had the same two very best friends since I was in sixth grade and my senior year in high school. They are soul sisters. They have been here for the long haul. Loved me when I was my least lovable but most in need of their love. They've never wavered. I also have some new, amazing friends. Friends who fill a different, equally important role.
SPRING Early Childhood Friends
I remember the first time I spent the night with a friend. Her name was Tonja; we watched Jaws, stayed up way too late, giggled, pestered her older brother, giggled some more. Tonja was my first best friend. We moved away from Tonja when I was seven; I was devastated. Until, I met Staci. She was my second best friend. She lived right down the road and had a swimming pool. We rode bikes and four wheelers with a kind of freedom that kids now wouldn't understand. I wouldn't dream of letting my kids roam the way I did, and I had the over protective parents! We swam all day, ate endless snacks, rode bikes back and forth and lived at each others houses for three years. We moved again after fifth grade. I thought, certainly, I would never have another best friend like Staci. I was right. I never had another friend quite like Staci.
SUMMER Middle and High School Years
We moved to a small town the summer before sixth grade. Here I felt like I would surely be miserable. I knew NO ONE. I was sad to leave the town I'd known, the school I'd known. After about three days in the new neighborhood, there was "gang" of kids riding bikes up and down our street. Really, it wasn't a gang. More like a herd of kids. Brothers and sisters, friends, deeply tanned from the hours on end roaming this small stretch of road and the fields behind the houses. On this small stretch of road, I met the most amazing friends. We too rode bikes, lived at each others houses, roamed our little neighborhood and often ventured across the railroad tracks to town even though it was expressly stated by many moms we were not to. In this small town, I met my husband. We went on "dates" in sixth grade with my mom and dad driving us all the way to the big city to see a movie. On this date, there would normally be four children in the back seat without a seatbelt to be found on. There would be Lucy, Brian, Me and Erin. I wouldn't dream of going ANYWHERE at that time with out Lucy or Erin. We would make "cozy turns" where all four of us would go scooting across the bench seat and see if we could make Brian's ears turn red. Those girls. They were my heart. Lucy was two grades older and Erin one. Eventually, because Lucy went to high school before me and was an athlete, our lives and friendship circles took different paths.
High School Years
Here I met new friends that basically revolved around my boyfriend (whoever it was at the moment). Looking back, I'm so lucky that my friend Erin saw me through this time. She stuck with me. Even when I wasn't a very good friend to have. Also during this time, I became friends with my other best friend April. Prior to our senior year, we were friendly. We went to the same small school so we knew each other and sometimes hung out at lunch, but our senior year, we had the same core group of friends. I am so glad we did. I don't know where I'd be right now without her! The girls here. Well, they'll always be "girls" to me. They are the ones I talk to once a week, still. They are the ones I love with a fierceness and a protectiveness that is only akin to sibling love. I don't have a sibling so I'm guessing here. They are perfect examples of kindness, generosity, forgiveness, calling bullshit when you're being stupid, letting you go ahead and be crazy when you need to, sending the best birthday cards even though I buy them the perfect card every year but never send it, and all around perfect friends. College Years (We'll count this as mostly leap year)
Let's just say I don't remember them much; I'm assuming I had friends. I'm also assuming I had a really good time. Let's agree to gloss over these years, okay? Except for two very important things. First, April stuck by me at my ugliest times; we'll leave that at that and agree that she's a saint. Also that at the end, THE most very important thing happened, Brian. Brian happened. Even at my most frustrated, I'm so very glad I pulled into that bar that had his name misspelled on the sign. The Early Working Years
Ah, you know these ladies. The ones you have so much fun working with. The ones you go to dinner with, have drinks with, go dancing with. I never thought I'd loose touch with them. But I did. One I've reconnected via FaceBook with, and it's fun to see her boys grow in a parallel world to mine. The rest, I look back and think of the fun times and wonder how they are. FALL The My Kids are in School Years
These are the moms that brought me back to myself somewhat. I don't know a lot of their real names. I know them as their kids' mama. But, they gave me something super important. They gave me a connection to this new small town Brian and I moved to. Someone to talk to, to fill the void of having no friends outside of phone calls to Erin and April. They gave me a reason to brush my hair and put on pants that weren't stretchy. We never socialized beyond the playground, but they too have an important role. I realized I need friends. One of the most important people I've ever met and grown to admire and love is my son's LSSP. She's more than that. She's his friend, she's my friend, she's the mama of my boys' friends.
The After Diagnosis Friends
Here is where I've met the people who get me through some day to day stuff. As I've mentioned before, BigBrudder was born with a cleft lip and palate. From the moment we found out at the twenty week ultra sound, we found a support group. These women. They saved me. They found ways to make us laugh, shared successes, fears, and understand the heartache of handing a child over for surgery. It's true that people don't get it unless they get it. You know? Then, there's this amazing group of women I've collected via the interwebs. They get the autism. They get the cleft lip and palate stuff. They get the solitude of being a mama. They get it. We rant, we rave, most of us will never meet in person, but we threaten to go to IEP meetings, we talk about gross things, we support one another. It's ah-may-zing! I have a few friends, autism mama's if you will, that I know in real life. They too are a life line. A reminder that I am more than a mom. You would think that all we talk about is Autism or disabilities or our children, right? Nuh-Unh. One friend, who has become one of the fastest friends I've ever made, we talk about our tiny bladders, we laugh till we nearly pee our pants, we shop, we go out and see music. Do we talk about Autism? Yes! A lot. But not as much as we just love and support one another.
So, through each of these seasons of friendship, some come, some go, some stay the course. I used to be the kind of girl that thought I didn't need friends or didn't have a lot of friends. The more I think about it, I DO have a lot of friends, they each have their own, very important, undeniable place in my heart. Each of these friends has me looking toward the friends I will have during winter. I hope that I get to meet some of the friends I have via the interwebs, I pray that my beloved friends will still be there. I wonder if during winter we'll have girlfriend retreats? I really hope so. I really hope that my two best friends can meet and love and support some of these other amazing women the way they have me, but only if they remain my best friends. I imagine a winter fire in a posh(ish) cabin , loads of fun with barrels of wine and beer and good music, food and laughter. Lots and lots of laughter.
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."
About every six months or so, the neurotypical Wee One has a rapid decline in behavior. This always gives me a whirlwind of doubt and guilt. First, I begin to doubt his neurotypicality. Then, guilt sets in. Finally, I remember it's time for this.
We don't do a lot of things well around our house, but I think we're pretty fair parents. We keep things equal. We praise both of our kids. But you know, I do not have a FB page and a working children's picture book called "The Neurotypical Wee One" do I?
Last night the Wee One
asked me to wake him up early for some am cuddle time. We did that, and man can that kid cuddle; he still pats my back when he is hugging me, and his giant head still fits in the crook of my neck.
Today is a half day at school, so after lunch with daddy and Big Brudder, Wee One and I will settle in for a Doctor Who Marathon. I think since it's his day, I'll fry up some bacon for dinner.
I have to remember it doesn't take much, and it doesn't take money to nourish the Wee Ones soul.
It's the first day is school around here. This mama has been a wreck. I've had stress dream, I'm anxious, I can't sleep. You know who my anxiety is for?!? I'll give you three guesses and the first two don't count. "Big Brudder?" You ask. Nope. I'm anxious as all get out for the NT Wee One. He's going to the big kid campus. Low man on the proverbial totem pole. Also, the one kid whose been a bully is in his class this year. Great. My kids are good at lots of things, especially holding a grudge. All I have to say is this kid better keep his hands to himself. The wee one will only tolerate so much and this mama? Well, we know about her.
Lunches are packed. Put in the first day empty backpacks. Let's get this day done!