I don't think it matters what Down syndrome means to our family. I don't think it defines anything at all to tell you how I feel about Down syndrome. The only thing that matters to me is what Down syndrome means to Addison.
The biggest thing I have noticed is this mother/daughter friction. She resents me for helping her. She resents me for not helping her enough. She is annoyed if I am trying to hang out with her and talk. She is annoyed if I'm trying to fix dinner and she wants me to come do something for her instead. She shuts me out. She welcomes me into her world with girlish whispers and face splitting smiles.
All of these things I don't chalk up to Down syndrome. I don't think that defines her or who she is right now. I think all of these things are characteristics of a very typical girl, working hard to figure out kindergarten and transitioning to life as a school child.
She is currently going to school in a mainstream kindergarten classroom- full time with a full time aide (who tells me Addison gets annoyed at her for helping Addison as well. This girl wants to DO IT HERSELF.) In addition to her classroom teacher and para, she has a special ed teacher and a team of therapists who are all committed to educating her alongside her peers. I could tell you how I worry about her getting so behind that she gets frustrated and stops trying. I could tell you how sometimes I can't sleep at night wondering how she is treated by her peers (or how she treats them). I could tell you how frustrated I get by not knowing what her day consisted of from her point of view because she can't/won't tell me more than a few words. I could tell you how THANKFUL I am for a team who is bending over backwards to give her the best school experience I could ever imagine (they put together a "daily report card" of her day for me after I told them I felt frustrated by not knowing how the day went down). But I really don't think my worries and frustrations and feelings matter in this story. The thing that matters? Is Addison's point of view.
I know that she wakes up every morning excited and yelling, "GET READY FOR SCHOOL!" If she comes to wake me up, it includes telling me, "GET UP! Friends! Classroom! School! GET READY!" with more enthusiasm than I have ever had for anything. Ever.
I know that when weekends come and I answer her with, "Sorry sweetie. No school today. It's the weekend!" She is momentarily crushed until she realizes that means she gets to spend time with Daddy.
I know that she gets excited about her peanut butter and jelly sandwich on homemade bread for lunch and will often save part of it to bring home and savor bite by bite as she watches her brothers play. I know that she is quite picky about what she will wear to school and often hides the clothes I pick out if it doesn't suit her fancy. Oh and she is obsessed with boots and leggings. (Girl is up on her fall fashions).
(and then there are the moments when what SHE picks out isn't going to work...at all...)
I know that her counting is really coming along, letter recognition is strengthening, and she is obsessed with reading even though her sight words can be counted on one hand. At night time after I read the kids their story, she will grab the book from me and say, "ADDISON read it now." With quite the bossy confidence.
I know that when we do our afternoon song time, she knows ALL the words to ALL the songs and sings along quite lustily. (The ABC song has gotten quite specific)
I know that when we went to her classroom open house, she was immediately flooded with classmates happily shouting, "It's Addison! Addison is here!" Almost as if "They party can get started now!!!" (This also happens when I drop her off)
I know that she falls fast asleep at 6:15pm every night. Exhausted. Snoring. Sprawled out on her "new bed". (This is what she still calls the bed that we bought her mid-summer.)
But as I see it- this story is about a little girl adjusting to school and learning. It has nothing to do with Down syndrome.
I am very careful about posting specific school details because:
1. I want to value her teacher and para's privacy
2. I want to respect the school's privacy
3. I feel that sometimes parents of older kids read about decisions we are very carefully making and automatically assume our situation is JUST like their situation and then I get a ton of message of well-meaning friends who tell me that I'm making the wrong decision since that is not what worked in their child's situation. Being totally honest here- that is not at all helpful. All of our kiddos are quite different not to mention the school/settings are different.
I feel lost as a new school mom and yet I feel empowered as I watch my child succeed in her own way. I feel overwhelmed as I juggle her drop-offs, Carter's preschool drop-offs, baby appointments, and a sweet baby Eli turned Terrible-Twos-I-Will-Run-Away-From-You-Every-Chance-I-Get Eli. And yet I feel strong as I have been stretched between many things...and yet still find a way to make it all work. Well. (It helps that Baby Sister has graciously allowed me to return to some half caf coffee).
But once again- when it comes to the story of Addison, of Down syndrome- I am just a minor player in the game. Addison is the one up to bat. It's her perspective that matters, and I am THRILLED to be hearing more of it from her.
I find myself backing off the Down syndrome posts because I am watching and waiting for her to pave the way to the next thing. I don't want to define it for her by my blog pontifications. She surprises me every day, and my job is to work on communicating with her, understanding her, and giving her the tools she needs to continue to succeed.
Oh. Confession time. I don't spend a ton of time outside of school hours working with her on her letters, numbers, and reading (other than our usual reading time). She goes to school every day from 8:00 to 3:00. When she comes home I want her to play with her brothers, to get some down time, to do things like help me around the house and learn life skills just as important as school stuff (in my humble opinion). I want to BE with her instead of pushing more learning down her throat when she is already exhausted and barely hanging on until dinner, bath, and bed. I am a firm believer in a balance between learning life and learning academics (with an emphasis on learning life for all of my kids at this point). Thankfully, her school assigns minimal homework and makes this really work for us.
This confession probably means I am a really bad Down syndrome mom. Go ahead. Say it. (Confession #2: I might be riding a rather intense Pregnancy Cranky High. Yes, that is a real thing.)
But like I said before, I don't see myself needing to focus on being a great Down syndrome mom. I am focusing on just being an OKish regular mom to all of my kiddos. Oh and surviving. I hear that's a good thing to do.
Here is your school update. Here is my reason for not posting a ton about Down syndrome this month. I share with you Addison- the whole picture (yes, I am on Instagram more than anywhere else right now. User: eanfe) I'm sure I will get back to specific Down syndrome advocating, but for now we are in a transition period, and I am hanging on for dear life. This new confident, independent, annoyed-with-me-like-a-teenager Addison takes everything I've got to mother. And yet it is amazing to see because it is so normal.
(one of the more seasonally appropriate outfits that she put together)