2014 has kept me on my toes so far! I feel like I have to stop and consciously remember to breathe at least every third day :) There was a time when I said having a child with special needs didn't make life harder and I'd now like to take that statement back. Let me explain....Now that we have three children with special needs, I am much more aware that this lifestyle we have chosen and been so blessed with makes living in a world where everyone is obsessed with the American Dream, SO hard! You see, I'm realizing more and more every day that our values are not the values shared by much of the world today.
We've been struggling with lots of transitions...Zoya will be transitioning to Kindergarten in the fall and Mila transitioned out of early intervention (and is doing some outpatient therapies now) and before I could even catch my breath from that they told me that it was time to start Sofia's battery of annual assessments and preparation for transition planning since she turns 3 in 5 months. With all of these transitions come assessments....you know, the kind designed to hold my kids up against a whole bunch of other kids WITHOUT any special needs. The kind that rarely showcase how much progress my girls have made....the kind that barely give them an opportunity to demonstrate their strengths. Much of the past year at least one of the girls has been undergoing "assessments." Now, as a former teacher, I logically understand the necessity, but as a Mama I think these assessments are absolutely over-the-top and a big fat waste of time, for the most part. Listen, we all know what our individual strengths are, and we all know what areas we need to continue working on. I've been stewing over why these assessments and transition meetings have stressed me out so very much.
When it was just Zoya, we sucked it up once a year for her annual evaluation, and we held our breath for the preschool transition assessments and meetings. We hated the assessments, but we sucked it up, got through it, and breathed a sigh of relief when they were over. Now with three children, the "assessment" brick just keeps knocking me over. Over and over and over I'm reminded of what my children can't do. I never felt the need for my children to try and "keep up" with other children their age...that's not why it bothers me. It bothers me because I know I can't change other people....I can't change their knee-jerk reaction to initially (and sometimes only see the deficits of my children). I guess the whole reason these assessments stress me out so much is because they just remind me that the world's goals and values are so so so very different from our goals and values. I can't change the world, I figured that one out a long time ago, yet I can't deny how much it saddens me still, when other people don't see the beauty in my children in even half the light that I do. They are so much more than an assessment.
They are not broken. They do not need to be "fixed." Of course we want them to do their best and will help them foster their God-given gifts and talents. We want them to be happy and we want to give them the tools for lives they can live as independently as possible. But you know what? If they live with us forever, neither Shawn nor I would be upset. In fact, try convincing Shawn that his girls very likely may want to move our one day and have lives of their own....he's not ready to hear that yet ;) Keeping the future in mind, yet valuing our girls for exactly who they are today is a delicate balance. The world says fix, fix, fix. I feel this at so many therapy sessions, so many team meetings where all the professionals try to figure out what is best for my children, so many social events where they don't quite fit in as perfectly as everyone else...and on and on.
I feel this pressure of the "American Dream." Five years ago the Lord spoke very clearly to Shawn and I that the purpose of this life was not just to go through the motions. Having our three sweet girls with special needs has reminded us daily that we are different, but it's also reminded us that that is something to be proud of. There was a time when material things mattered so much more to us...when we dreamed of making lots of money, having the biggest and bestest "stuff", going on vacations around the world and living a life just to serve our own desires. This cracked-out idea of the "American Dream"....guess what? I've got the inside scoop that those people chasing that dream don't and won't ever feel satisfied or happy. You know why? Because I used to be one of them. It wasn't until I kicked that "American Dream's" ass to the curb that I was able to see, and feel and live this beautiful dream that was always mine for the taking, if I just slowed down long enough to embrace it. And embrace it, I will!
Our American Dream now means....
loving without holding back....
laughing without ceasing.....
smiling for any old reason!
This great new "American Dream" means
Snuggling and just being!
Embracing our differences....
Truly enjoying the little things....
And sharing life deeply connected to other souls!
Our American Dream can't be measured in dollars, or job promotions, or fancy things. Our American Dream can't actually be measured at all. It can only be felt. And once you feel this, the worldly values just fade away.
Our American Dream can't be measured in dollars, or job promotions, or fancy things. Our American Dream can't actually be measured at all. It can only be felt. And once you feel this, the worldly values just fade away.
Only a heart that loves as the Father loves us can truly understand this! But that beautiful love that led you to your 3 treasures so outweighs anything that we could dream up in our American desires! Love this Sarah! And I will be praying you though those assessments!! (((BIG HUGS))))!!
ReplyDeleteBeautifully written!
ReplyDelete"The world says fix, fix, fix" Change it to "Grow, grow grow" Don't look at standards and norms and those results. Simply ask what they want to teach your girls. Tell them you don't care if writing her name is a four year old thing, you just want to know how they will reach that goal. Tell them if she needs to run 90 steps then how should we help her do that. Tell them you don't need to compare her to anyone else. They have to assess her but you don't have to compare her. Then when they hand you your copies, put them away. All you need is the IEP goals to make sure they are doing what they should. I was a teacher and I think parents should revolt and refuse to let the system manipulate them. Hmmm, maybe that's why I'm not a teacher now! :)
ReplyDeleteFor sure you have something different.
ReplyDeleteSomething more and this is rare.
You can just loving, just living, without comparing, just see the best of each girl.
I hope, one day, doing the same
Amen!
ReplyDeleteWendy
Amen sister! Great post!
ReplyDeleteI LOVE this post, Sarah... and for so many reasons. One being that you and your family are "the real deal." You are refreshingly honest! Another reason I love this post is that I totally feel the same way--the world places so much value on societal measurements of success. In fact, I still find it rather sad that, when meeting someone for the first time, the first question is often "So, what do you do for work" rather than "Who ARE you? What is it that makes you tick? What are your dreams and passions? What makes you laugh? What makes you cry?" I guess this is the social worker in me. But I also think it is because I have differences that I feel are often viewed as negative. I was a "late bloomer" in some ways and a lot of that came due to years of childhood abuse and unmet emotional needs. I do not drive. I am currently disabled and hoping to get back into the workforce very soon. I have a weight problem. In society's eyes, that makes me worth judging. At least, for many people. And therefore I have learned to judge myself harshly--but never others.
ReplyDeletePersonally? I think your girls are beautiful--they SHINE and I'm sure they have their strengths and weaknesses just like their peers but they are definitely NOT any less worthy! You are all very blessed to have each other and I'm so glad you do!
We all have dreams. Just keep dreaming big no matter what!
ReplyDeleteSaving and loving these three little girls is the most important action you will ever do. Many blessings!
ReplyDeleteLove your family!! You do not have to have them give you the results of the assessments. In my opinion, unless the assessments are for children with ds they are invalid. Let your team know that you focus on what the girls CAN do! Provide them with all the things the girls can do and have them do the same (ie..."since the last assessment, Zoya CAN__________", etc.) Then tell the team what you want them to be working on with the girls! As you know, you are the girls first teacher and always will be. You feel just as I do.......look at all the amazing things my kids CAN do!!!
ReplyDeleteSusan from Boston
Can I just say that you have the best blog ever!! I don't know you but stumbled upon your blog through Reece's rainbow and have fallen in love with your girls...but not in s creepy way, don't worry!! ;) I have enjoyed playing catch up this last month and just truly enjoy reading about your little girls. My husband and I have been blessed ourselves with a little boy with down syndrome through adoption and just think the world of him. I love that your heart for your girls really shines through in what you wrote so thank you for blessing me! :)
ReplyDelete