Friday, October 17, 2014
Friday, October 10, 2014
Tuesday, October 7, 2014
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.
Sunday, September 14, 2014
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.
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.
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.
Thursday, September 11, 2014
Friday, August 29, 2014
Monday, August 25, 2014
Saturday, August 16, 2014
By this time last summer, I'd written our letter to the teacher. It's a good one. You can read that here. This summer, I'm wondering if I even need the letter. Big Brudder has changed and grown to a point that has me beyond pleased. Is he "typical" ? No, but more often than not, I feel like "he's got this." The NT (neurotypical) Wee One is going into big kid school; I honestly feel like he needs a letter to the teacher more than BB. He's definitely more challenging at the moment. His apple doesn't fall far from the maternal tree, bless his heart. Maybe this year instead of letters, I'll give those tiny little liquor bottles and gift certificates for a massage.
I'm ready for routine. I'm ready for my boys to miss each other at the end of the day. I'm ready to miss my boys at the end of the day. I'm ready to clean my house (did I jsut say that?) and to be able to enjoy the clean for a couple of hours. I'm ready to rock this school year like the awesome helicopter mama bear (did you know bears fly helicopters? They totally do!) I am.
Sunday, August 10, 2014
Verstehen is associated with the writing ofMax Weber. Verstehen is now seen as a concept and a method central to a rejection of positivistic social science (Positive School, although Weber appeared to think that the two could be united). Verstehen (ferchaen) is the use of empathy in the sociological or historical understanding of human action andbehavior.
Basically, Verstehen is taking empathy one step further. It is saying although I don't walk the walk in life you do, I will put myself in your shoes. I will listen and hear you.
An example where I would love to see this is when we discuss anything at all! This means, politics, religion, vaccines, wether I would change my child's neurology or not, wether I homeschool (or in my case definitely not), wether I buy all organic, choose gluten and casein free or not. Everything.
In having a discussion on FB (one of the rare ones where people didn't get irate over the topic of neurology I came to this realization. There has to be room at the table for all of us. We, every single one of us, need to embrace and support one another, not despite our differences in opinion but because of those differences. There is so much to be gained by actively listening to those with a different perspective. I would never ever change my kiddos neurology. But you know what? I recognize he can tell me he loves me, can tell me (most of the time) when he's ill. My son doesn't have PICA (the desire to eat not nutritive things), he doesn't smear his feces. If he did, I recognize I might feel differently. Our walks are different. Everyone's walk is different. You came to your point of view because you are uniquely you. I respect your walk.
Do I always practice what I preach? Nope. I'm trying. I'm trying really hard to remember that just because we disagree, that disagreement is not an indictment on my personhood. Feel free to remind me of this.
So let's quit calling "BS" when someone expresses a point of view we don't share. Know that my point of view isn't one of popping rainbows and unicorns. Someone else's is not that of bitterness and anger. Instead, let's take a breath, practice VERSTEHEN, look at how that other human we are sharing this world with came to their point of view, and play nice. If we do this, even just sometimes, I promise you we will be nicer human beings to be around.
VERSTEHEN on my friends!
Thursday, July 10, 2014
The whole "would you change your child" thing. Disclaimer: I come from the perspective of a mom to a profoundly gifted, child with Aspergers as well as a cleft lip and palate. Just because my child is on the "high functioning" end of the spectrum does not mean that he does not face challenges and obstacles that often far exceed what I feel like he can handle. Looking back to when Big Brudder was two, my answer probably would have been different. That was a time when he wouldn't eat...for days...I mean days at a time. His meltdowns were hours if not the whole day long. But you know, if I'd had a magic pill and changed him, changed his neurology at that very early point in his development, he wouldn't have some of the best coping skills out there. Due to his cleft lip and palate, my son has had countless surgeries. Several summers ago, he had a hole drilled into his hip where they took bone marrow and injected it into his gum-line. You know what that kid did? He rocked his bone graft like a champ. This kid, he is a survivor. He is a champion of champions. Does he still perveserate on things? Oh, the perveseration that goes on in this house. Between me googling sofas and him asking me every three minutes about something he's focused on, it's a miracle anything really happens around here. Does he still stimm? Like crazy, but he's learning when and where it's acceptable to do so. Does he still meltdown? Honestly, not really. On the very rare occasion, but he has learned to cope and use the skills he's been taught to work his way through. This kid avoids eye contact like the plague, but you know what he taught himself to do when he was three or four years old? Look at people's noses so that he was meeting the social expectation of listening. Two years ago when I was speaking with his principal about an issue that was happening at school, I had a realization. I understood, in that moment, that through the struggle of an awful school year, he had grown by leaps and bounds. This kid is ready for whatever life throws at him. He can handle more than most grownups I know. Does that mean he has friends? Not a real one. He's got a few that tolerate him. Maybe, I would change that for him. I would make kids see him. See past the squawks, see past the awkward gate, see past the inability to hold a real conversation. But, ultimately, he's got this. He's got whatever it is that life throws at him. No changing him. Besides, he is where the unstoppable force and the immovable object meet. No changing him even if I wanted to.
I've also been thinking about intent. So many people get so angry and frustrated (me too) by small things people say or do "to us." Lately, I've been thinking about the intent behind those actions. Surely, you've been given parenting advice. One of my faves was "He'll eat when he's hungry." Yeah, no he won't. That made me so, SO, SO mad. But, should it have? If I had had the clarity to take a step back from those situations, I could have asked myself, "Does this person mean me or my child harm by saying this?" Same goes for the "you can hardly tell he had a cleft." That is said meaning well. And, it means that my kid is gorgeous. Because he is. Along those same lines, a friend of mine blogged the other day (I had also written a FB post about this, so I'm totally not stealing her thunder, but you can go read her blog about it HERE ) is all the "what not to say" open letter type stuff. I get that when people say things, it can be taken a different way than they mean, but let's be honest. If you stop. Really, truly stop and look at the intent behind those words, shouldn't you a. be thankful someone said anything rather than ignore whatever situation you are in? b. be thankful that didn't say eff you, or if they did be thankful they said what they truly meant? I can keep that in mind, unless of course you question my kid's dx. Then, we've got trouble and I might take off my earrings and flip flops. ;-)
Autism and vaccines: Find my thoughts on that click here but not if language offends.
Finally on the autism communities' us vs. them vs. them rife: stop it. Stop it now. Our walk is our walk, your walk is your walk, their walk is their walk. Parenting is hard, typical, ASD, HFA, severe autism and a myriad of other stuffs. No one has the the exclusive on hard. Get over it.
So, now you know my opinions on everything almost under the sun. If you've waded through this, you deserve a treat. Go get you some chocolate or coffee or something.
Friday, May 30, 2014
1. Get my ladies check up.
2. Go to the dentist.
3. Color my hair.
4. Fold and hang all the laundry on the "guest bed" aka folding table or as hubs calls it, the giver of socks.
5. Clean closets.
6. Clean the bathroom.
7. Blog more.
8. Finish my children's' book.
9. Find an agent for said children's book.
10. Have lunch with my friends.
11. Mop my floors.
12. Clean off the coffee table.
13. Go furniture shopping.
14. Stock up on sunscreen.
15. Stock up on snacks.
16. Get our summer lessons ready.
17. Loose thirty pounds.
18. Shave my legs.
19. Organize my pantry.
20. Read a book.
I'll totally get right on that checklist on August 25th.
I've totally got 2nd and 4th graders in my house. Whoa.
Thursday, March 27, 2014
Friday, March 21, 2014
Sunday, March 9, 2014
1. I learned what it means to be loved unconditionally.
2. I learned that I only ever needed one spanking.
3. I learned that by not speaking to him for several days, I only ever got one spanking from him.
4. Milkshakes are okay at 10 p.m. as long as they are bought by Stocky.
5. Old lawn mowers make awesome go carts.
6. Little girls can make step stools too.
7. Tree house grand openings are all the sweeter when a fried shrimp dinner is served in them.
8. I often think my kids have strong Chisolm genes (they do), but when we perused photos of Stocky and his brother Lightning, I'll be darned if it wasn't like looking at a picture of Joe and Chet.
9. Pound cake is best made on the kitchen floor.
10. So are dinner rolls.
11. Both are completely acceptable breakfast foods.
12. When your grandfather pulls out a hundred dollar bill on vacation, you will be impressed.
13. Sometimes, it's good not to have a plan on vacation.
14. Sometimes, you stay in a dive because you don't have a plan on vacation.
15. You should always leave on vacation at midnight so you can get through the Texas panhandle in the dark.
16. Easter dresses are even more beautiful when Stocky buys them for you.
17. The Gingham Dog and Calico Cat is not a sweet poem.
18. Foot rubs can cure a little kids migraine.
19. Sometimes, the nicknames you are given define you. Take for instance "Stocky." That wasn't his given name. But it was who he was. I was pretty old when I realized neither of my grandparents names were their "real" ones.
20. Sometimes, the nicknames you give define how someone sees you. Bell. For my whole life, I heard, "hello, Bell!" I can still hear it. I miss it. I probably always will.
21. We should do things not because it is what is expected of us, but because it's what is right for us.
22. Gimme caps are cool.
23. Fur fedoras with ear flaps are cool.
24. Strawn, Texas is kinda neat.
25. Value education. Even if you don't have a degree from a college or university, never stop having a thirst for knowledge.
26. When I was about seven, I learned my grandfather could seriously jump rope. Like, he was really, really good at it.
27. Boxing might not be the best sport when you are five foot something or another, but it makes you a badass.
28. Leather helmets while playing football were crazy.
29. Sometimes staying married means that neither of you wants the kids. ;-)
30. Marriage is work.
31. You don't have to raise your voice to get your point across.
32. Value your family.
33. If you don't have something nice to say, don't say anything.
34. Sometimes, silence doesn't mean you don't have anything nice to say other than it's nice to be quiet with you.
35. Humming and whistling at 5:00 in the morning really do make you happier.
36. When you visit someone for a week, it's really awesome when you cook supper for them and clean their house.
37. It's special when you travel 250 miles to watch your grandkids track meet or basketball game or one act play.
38. You should always hold hands with your spouse.
39. Sometimes, your grandparents house becomes home.
40. History can be interesting.
41. Life ain't fair.
42. Anything that ugly ought to hurt.
43. If you don't know you're short, you aren't.
44. I am tiny but tough.
45. Butterfly kisses stop snoring.
46. Sometimes you are punished when you shouldn't be and sometimes you aren't punished when you should be.
47. It's never okay to use the "N word"
48. Sometimes, men are the better cooks and that's great!
49. Pancakes are a great breakfast.
50. Pancakes are an even better supper.
51. Sandwiches made on homemade dinner rolls taste better.
52. Little cans of orange juice and little bottles of sprite make vacation fun.
53. Listen more, talk less.
54. Wicked senses of humor are where it's at!
55. Take care of what's inside your car, you never know when Stocky's going to take it for an oil change.
56. Love someone when they are at their most unlovable.
57. Take care of your spouse when they need you.
58. Eating a meal together is of utmost importance.
59. I will endure a John Wayne movie because he liked them.
60. Watching Golden Girls with your grandparents will make you want to watch it forever.
61. The Cosby Show is still funny when you can't remember who is sitting next to you.
62. Dominos is not a game to be taken lightly.
63. 5 card draw will not be won unless you win it legitimately.
64. Solitaire is not boring.
65. Wind suits are cute on old men.
66. So are shorts with black socks and sandals.
67. It's great when men help with housework.
68. I might have to trim my husband's toenails when he gets old.
69. Grandkids are special.
70. Great-grandkids are even more special.
71. Your spouses family IS your family.
72. Mount Rushmore isn't that impressive at 12.
73. I want to visit Washington D.C.
74. My grandfather was one of the smartest men I'd ever known.
75. God loves you and believes in you.
76. An old man loosing his memory will still walk down a steep hill to watch his great-grandsons fish.
77. Great-grandsons will make you nervous.
78. Love the life you have.
79. Getting old means you can be a little eccentric.
80. I want to rust out not wear out.
These last few are hard for me...
81. Alzheimer's and dementia are unfair.
82. Moments of clarity are a blessing and a curse.
83. I will always look for Brian...even when he's right here.
84. I want to maintain my dignity until my dying day.
84. I want to remember my loved ones until my dying day.
85. I want to look back on my life and be proud of the choices I made.
86. I want my kids to be with me when I leave this world.
87. I want my husband to love me the way my Stocky loved my Teda.
88. My life was better because I had Stocky in it.
89. This world would be a better place if everyone had a Stocky in their life.
And a bonus:
90. My most cherished memory of his final year...I went to visit him at the "home" before taking my children for what I knew would be their final goodbyes. I knew I had to grasp this before I took the children to visit him. He was unresponsive and sleeping. I stayed for a bit with Teda. He never acknowledge either of us. He wouldn't take his medicine or even a drink. He wouldn't open his eyes. Later when I went to pick up Teda with the boys, we sat and visited and talked to him. When the boys went to give them his hugs and kisses, goodbyes and I love yous...he turned his head, opened his eyes and smiled.
Sunday, February 23, 2014
By saying parenting a NT child is easier by comparison does exactly what we don't want. It marginalizes our kids. It says to the world, they are harder to love, they are less than. They aren't.