Since last fall, I have been dragging poor L to various specialists and working with her school to try to figure out exactly what is going on with her. Some days, I am convinced we are 100% on the right track. Other days, I think all the specialists are idiots and we are wasting a ton of time and money trying to fix a kid who isn’t really broken anyway.
What we have discovered so far is L is atypical. She has a smattering of small issues that are making her life more difficult than it needs to be. To complicate things a little more, these small problems are not necessarily related to each other at all. Each problem itself isn’t too big a deal, but if you look at the small effects of each and add those together, it might add up to be a significant problem. On the other hand, it might not.
The unrelatedness of her issues creates their own challenges. She doesn’t have many of the problems you would expect given with on the areas where she has challenges (e.g. she has vestibular issues, but doesn’t seem to have issues with proprioception). Because her issues are so scattered and unrelated, they are easy to dismiss or overlook entirely. We have been working to tease things apart to get to the bottom of what is really going on.
When we sit through these meetings with professionals who claim they have the answers, it becomes harder and harder to remember that it is L we are talking about. Instead, we talk about Sensory Issues, Vestibular-Ocular Reflex, Baseline Arousal Level, Motor Planning, Visual Processing, Midline Issues, Auditory Processing and Possible Future Anxiety or Attention Disorders like THEY are the person.
It makes it hard to see L when I look at her. Instead of seeing a girl who is thriving despite a few bumps in her developmental road, all I start to see are the bumps.
Those labels are not L.
My L, she is an amazing girl. She got a raw deal at the start of her life. She has survived a broken heart, but she keeps moving forward. She has a smile that lights up the room. She has a husky little voice and a funny chuckle when she laughs. L is as strong as a little monkey. She loves to eat snacks, but never more than a couple of bites of any one thing. She is easy-going, except for the rare occasions when she’s not. When she decides to dig in, we may as well give up and let her have her way because my girl can be very stubborn. She is a gentle little soul, but she is a survivor. She is tougher than most people will ever know.
There is no label that will encompass all the things that make L so perfectly herself. She is not damaged goods. She isn’t a jumbled bag of problems for us to solve.
I will try to remind myself that we aren’t trying to “fix” L. We are only trying to make life a little easier for her. I will let these specialists try to iron out the wrinkles, but I won’t lose sight of L in the process.
This is a very loving, sweet post. I like your intent to keep being aware that there is a Real Person behind all those labels…
And, yes, she is a cutie!
My L. . . My girl. . . There’s the mother heart jumping off this page. Hang in there for her. Mother does knows the big picture, therefore Mother knows L better than any specialist in one narrow area or another.
Yes, this is a sweet post. And a really great photo — I love that expression on L’s face.
she is perfect that wee one. I love her mucho. You are great parents. xox
my daughter has similar issues.
she is adorable!
Lovely post, a beautiful child, and great reminder that we are all in the parenting biz to companion our kids, not “fix” or “raise” them to be anything different than what they already are.
*Gasp* She’s gotten so BIG! I can’t believe that’s L! I love that picture.
Such a great post. Just wondering – are the therapies the same (whatever they are for speech reading etc) regardless of the label? Or are the professionals really looking for a label to guide therapy? Can’t they just start therapy first and figure out a label, if they must have one, by what works?
This post made me look at Malcolm. Thanks.
I love this post. As a momma whose daughter also survived a broken heart and deals with sensory issues, I love this post. Your L is a gorgeous little gal, inside and out.
Beautiful post!
I’ve been following your blog for a year or two and have never commented before, but this post was so incredibly moving… you are such a wonderful mother, and you and L are so lucky to have one another. Thank you for sharing so much of what’s on your mind and in your heart, and teaching me that parenting is about so much more than genetics and biology.
I came accross your blog via No hands.. and really feel for your situation. I am somewhat in the same situation with my son who spent 4 years in foster care – in good homes but still foster care. And ‘professionals’ just wnat to label and have some reason that this child – yours and mine – isnt normal. But our kids are exceptional. Do you know what they have overcome??? do you know that a weaker person would never survive what our kids have had to and still have to deal with?? Oh my heart hurts for your little sweetheart and my son and all the children who have overcome so much to be treated so poorly. As a result of school issues, I have made the decision to homeschool my son for the rest of this year, so that he can acheive without labels and negativism. And I too have sat thru so many meetings for his schooling only to walk out with the sense that he isnt the problem, its the teacher.
Sorry for my rant, but blessings to you but mostly for your daughter who has overcome and is continuing to overcome.
With love from my home to yours
Joyce
awesome post and a great reminder as I often get caught up in labels with my daughter
Great post! As a mom to another little beauty with sensory issues and other things, it is easy to lose sight & get caught up, thanks for focusing on the most important part of it all, your daughter. Your L is beautiful.
I love this: making life a little easier for your beautiful girl is exactly the point.