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Wednesday, September 30, 2015

Broken Mama Heart

Little Miss Ella had Occupational Therapy yesterday, as she does every week. When my friend, the OT, brought Ella out to the waiting room after her session, she had That Look on her face that I know so well. My friend had found something new for me to worry about for Ella. She had found another piece of the mysterious puzzle that is my daughter. I braced myself. 

It was something I already knew, something I had seen at home, and had actually already discussed with our educational advocate (who has already opened a little electronic file on Ella with all my emails, in the eventuality that my little dear also needs help to get help at school. It's coming, mark my words.). My friend, our OT, said that she noticed that it is very difficult for Ella to follow multi-step directions, despite the fact that she is paying attention and trying very hard. Something happens in her little noggin that makes it so difficult for her to understand and comprehend what is being asked of her. 

Yep. Knew this was coming, just was sort of waiting to see if the rest of the world would identify it as an issue. I was hoping I was that "crazy mom" that some people have accused me of being through the years: that mom that thinks all her kids have all kinds of issues that are actually non-existent. Nope. I'm not that "crazy mom." Unfortunately. I wish I was just crazy and that my kids didn't have all these problems. That would be preferable. But sadly, I'm not nuts.

I asked my friend, our OT, if Ella should get back into Speech Therapy to address these issues. They are the same issues that Aidan has been working on in speech for years. Isn't that sort of funny? Ella is turning out to be so much like Aidan in regards to the areas that they need support in. Ella doesn't get as confused as Aidan does with every day type things. She doesn't ask in September if it's February. She knows where the front door is. She understands which room of the house is the living room. But I definitely see areas of great confusion for her. When we do homework, she tries so hard. But she still is confused about what step to take, what to write, what the directions are asking her to do. I was hoping this was just part of her tough adjustment to first grade, and that it would all sort of even out and get better as the weeks went on. But it's not.

Yesterday Ella cried because she said everyone in her class is smarter than her, and that she is so dumb. She said she doesn't know anything and all her friends know so much more than her. Ouch. Do you hear that? That's the sound of my heart being crushed. I can see how the areas that Ella's brain struggles with could lead her to believe she is dumb, that she isn't as smart as her classmates. It's not true, but I can see how Ella could perceive that. I can see her self-esteem crumbling before my eyes. This has happened to Aidan too. Both of them are perfectionists, and when they cannot achieve perfection they are so hard on themselves. The irony is that they are two of the most incredible beings on this planet. It makes me so sad to understand that the world they live in is shaped in a way that they are made to feel dumb, when they are actually brilliant in so many things. I tried to tell Ella that yesterday. I tried to explain that sometimes math comes easy to friends. Or understanding directions. But sometimes those things are hard for someone, but they are smart in other ways that are just as important. Like Ella is so smart when it comes to understanding people and taking care of others. She is so smart when it comes to being a beautiful, generous human being. 

Ella just ignored my great speech and kept crying about how she's dumb. So much for my eloquent problem solving techniques.

Our OT thought it might be a good idea to get Ella's hearing checked to make sure all the ear infections she's had haven't damaged anything biologically. If that all checks out ok, then speech therapy will be the next step. Meanwhile, I'm sitting here with my skin crawling, knowing that my little girl is at school, not understanding half of what is coming her way, feeling more dumb as each day goes by. How do you put a shield around your kiddo who learns differently so their self esteem isn't damaged by a world that is made for typically developing kids? I want to jump in my big, dirty, popcorn-encrusted van and rush over and save my baby girl. It's not that she has a bad teacher- just the opposite. She has been blessed to have four absolutely incredible teachers touch her life these past few years. It's just Ella's brain. I don't know how to sit by and watch this happen to my baby- watch her self esteem go to a deeper place every single day. There isn't a quick fix for this. I'm afraid that by the time I get her into interventions, by the time the interventions start to help, she'll be so entrenched in her low self esteem that it will be impossible to crawl out of the hole. I want her hearing checked RIGHT NOW. I want her to see our Speech Therapist RIGHT NOW. I want her to have help at school RIGHT NOW. So we can salvage what is left of her beautiful self-confidence.

I do have to say, this is why I stick with the team we have in place for the kids for therapies, nutrition, medical advice, and school advocacy. This is it. My friend saw a tiny little thing that other people in the world may have blown by, not noticing the bigger problem that is under the surface for Ella. But not my friend! She notices all the nuances of what is going on with my kiddos. She saw the bigger problem. She is so gifted and talented and brilliant. All of our therapists and our advocate are like this. If it weren't for them helping me figure out what to do to help my kiddos, I would be totally lost. So many times a therapist has told me that there is an issue that requires a different approach, or a different therapy, and I depend on them for their expertise. I am not an expert in all these things that my kids have going on. I depend on our team to help guide me in how to help my kids. 

I depend on our therapists to tell me the bad news of what else we need to work on. Because while it is bad news, and I do have to brace myself because my heart hurts when I find out NEW bad news about my kids, it is also a gift to know that there is a problem, and there are steps we can take to help make the problem less enormous. I depend on our educational advocate (who is also known at our house as Mama's BFF) to help me sort out how to get the kids the help they need at school in order to function in a world that is not made for them. I depend on our nutritionist to find out what type of support the kids' bodies need to function better. I depend on our doctors to tell me what is going on internally with our kids. I depend on our audiologist to tell me if Ella can hear. I depend on so many, many other people to help me help my kids.

So I'm sorry, dear OT friend, if I looked terrified yesterday in the waiting room. I was trying very hard to not look like a deer in headlights while we talked. I was trying to look like "Hey, I hear bad news all the time about my kids. I can handle it. I'm a professional Bad News Hearer." I'm not sure I succeeded in looking nonchalant, but I know you understand. Thank you for seeing the deeper parts of Ella and recognizing that she needs more help.

I'm going to go put together a plan to help Ella as quickly as possible. Call the audiologist. Email our Speech Therapist. Email the teacher so she knows what I'm seeing. 'CC' our advocate so she can tell me when it's time to get Ella help at school. I'm going to put a plan in place before Ella's self esteem gets too low to scrape off the ground. Wish me luck. It's hard to be an efficient, powerful advocate while at the same time your Mama Heart is broken for your baby.

1 comment:

Full Spectrum Mama said...

Nodding along - such a beautiful and *heartbreaking* and open post.
Love your "eloquent" solution - I have MANY of those ;)
And the feeling that people are looking at you going, "crazy mom, kids are Totally Fine" - trying to write that post but too overwhelmed...
You're such a great advocate!
Love,
FSM