And let me just preface this by saying that I am not writing this for a pity party, or sympathy, or for people to feel sorry for myself or my family. My intentions of writing this post are a bit selfish-I am writing it in the hopes that there are other parents out there going through the same thing that we are going through. I want to find the support of those going through the same thing. (also, this is a loooooong post so grab some popcorn)
Don't get me wrong, we have the strongest support system in our family and friends. Their support is something that we are so thankful for, whether it be lending an ear, a hug, suggestions, its welcomed and appreciated. But with that said, talking with people who are going through the same thing is a whole different type of support that I know we could benefit from.
I guess to tell Ella's story we can start from the beginning....
You see, from a very early age, Ella has always had some...issues, I guess you could say. I hate to use the word 'issues' but there really isn't another word, is there?
From the time she was to be transitioning from baby food to regular food, there were problems. You put something like french fries or even mac and cheese on her high chair and there were tears, like you had put live snakes or something in front of her. Getting her to try food was a nightmare. Looking back, being that we were first time parents we didn't really know what to do so we didn't push too hard.
It didn't take long for her eating habits to evolve into yogurt for every meal, pretzels, granola bars, and some fruit. Her diet limited, her willingness to try other food pretty much non existent.
Ella's Thanksgiving dinner: Granola bar, grapes and pretzels
Not long after, we noticed she didn't like certain sounds, noises and smells. When we were in public she would cover her ears and say "it's too loud I want to leave" or "it smells funny in here I want to leave."
Taking her to the beach was out of the question- from the moment she touched the sand for the first time there were tears. Lots and lots of tears. She hated how the sand felt, and the sound of the waves.
This was her on the beach pretty much every summer (which even this was a struggle).
A lot of it was the texture. Not liking how the sand felt, she even said the sound of the ocean bothered her. Because of all of that, we typically spent our beach vacations at the pool. Correction- sitting at the pool steps. Getting in and getting her face wet was terrifying-something other kids had no problem with. But with Ella? It was the last thing she wanted to do.
You're probably wondering why at this point we didn't seek medical help or anything We tried. Believe me, we did. Every doctor appointment Ella had from the time she was to be transitioning out of baby food we expressed our concerns with our doctors. Their response? She'll grow out of it. She'll grow out of it. She'll grow out of it.
Nope. Doesn't seem to be. It was around the time Ella was three and a half that our good friend (Aunt Nikki to Ella) offered to informally evaluate Ella (she is an Occupational Therapist). She knew we were getting nowhere with the doctors and could sense there was something going on with Ella more than just "she will grow out of it."
Sure enough, she had (mild) Sensory Processing Disorder. Basically, her brain is wired differently. Our nervous system knows how to accept and process messages and turn them into the appropriate behaviors and responses. Ella's doesn't. Luckily, hers SPD is somewhat mild, in that she is high functioning- just like any other child.
Over the years, she has gotten SO much better with the sounds and smells. I honestly can't tell you the last time she has said "its too loud" or "it smells funny."
If only I could say the same about her eating. She has seen an OT for her eating, which helped to an extent (we loved Miss Jaime), but it got to the point where there really wasn't anything else they could do on their end.
A typical day (read: every day) of eating for Ella looks like this: yogurt for breakfast (if she has any), lunch is a Gogurt, granola bar, grapes and fruit snacks (same lunch since Pre-K 3), a snack when she gets home-chips or pretzels, oatmeal cream pie, or brownie, and then dinner is usually two Gogurts and a fruit.
We try. We reason. We bribe (although not anymore-her therapist said that wasn't good to do). One time she licked string cheese so we took her to Target and bought her a Barbie doll- we were that excited.
Her eating is a work in progress. Something that is frustrating and stressful to us as parents, and I know to her. Just last night at dinner she started crying and said she was afraid she was never going to eat normal food. What do you even say to that? We did our best to remind her how far she has come (although tiny baby steps) and that all she can do is keep trying.
We have found though that it's something that is most likely going hand in hand with her anxiety, which is a whole other story....
Ella has always been a very, very (very) cautious child. I always used to joke that she was scared of life. Typical things that other children would do, like go down a slide, get their face wet in the bath tub and pool, or ride a scooter, Ella didn't want to do. It was one of those things that we kept saying "oh when she sees other kids doing it she will change her mind." Nope- not the case. All of that came with time, but we often think how much she has missed out on because of her fears.
Over the years we have noticed that her fears have gotten worse, to the point where it affects her on a daily basis. It's been within the last year or two that the word "anxiety" has started to creep into any conversation we have about Ella.
You see, Ella is really smart. She's just plain intelligent. And this isn't just me being a bragging Mom. Sometimes I feel like she is smarter than I am! Because of how intelligent she is, she thinks of everything. Things kids her age would never even think of. She overthinks things, and doesn't let them go. She thinks of every little thing that could or could not happen in any given situation, whether it be good or bad.
As adults, we may have those same thoughts/fears that Ella has, but we have the means to talk ourselves from the ledge, or rather reason with our thoughts. Being that she is only 8, she doesn't. For example, last week Charlotte woke up in the middle of the night throwing up (SO GROSS). It lasted an hour-short but gross. What made her sick could have been anything. But Ella made the observation that Charlotte had a waffle that morning for breakfast- a waffle that she had never had before. So last night, as I was putting Ella to bed, I could tell that we were working up to a rough bedtime. I asked her what was wrong-she started crying and getting 'panicked up' as she calls it, because she was worried Charlotte would eat the same waffle she at last Wednesday morning for breakfast and get sick again. Now as adults, we can rationalize with ourselves that there were SO many different reasons as to why Charlotte got sick, but to Ella it had to be the waffles. It was something we had to talk her through to get her calmed down.
Every night with her is a struggle- that is the worst time of day for her. She just can't shut her mind off. Her light in her room has to be on, she has to have her Taggie blanket on her pillow facing a certain way (you can tell when she starts to get nervous as she rubs the tags between her fingers), the TV downstairs has to be loud enough for her to hear, the bathroom door and our bedroom door has to be closed, along with the hallway light on, and she has to have her yearbook in bed with her (if you follow me on snapchat, you probably almost expect a nightly picture of her laying in bed with her yearbook.)
It's almost trial and error as to what works with her. We have tried a therapist before and that didn't help. Her therapist was a middle aged man- I don't really think there was any sort of bond there, plus he made me talk about Ella in front of her, which I totally didn't like. She has gone back to her OT because she feels comfortable with her, even though she really isn't a therapist. But like I said earlier, we are kind of on our own for now- her pediatrician told my husband at her 8 year checkup that her anxiety and worries "are part of her makeup" and that we don't have to worry about it.
I'm sorry, but I feel like now is the best time to treat and take care of it, that way when she is older she has coping mechanisms. It's hard enough to be a teenager let alone a teenager with anxiety.
A lot of times, when Ella gets particularly worked up, she can't even tell us why. From "I don't know why I'm crying" to "there is nothing in my head to tell me what's wrong" it's heartbreaking. I can't begin to tell you how frustrating and stressful it is to see your daughter crying and you can't fix it. Some nights, she is so hysterical you would think someone is pulling her apart limb by limb. We try to help, but sometimes our frustrations get the best of us, and the night ends with us yelling (and I mean yelling) at her. That doesn't do anyone any good, but those are the nights we are just at our wits end. Those are also the nights where I usually end up in tears because I (and I know Ryan feels this way too) feel so helpless as a parent. We just keep reassuring each other that we are trying our best-this is uncharted territory for us.
When she's getting worked up, t's easy for us to tell her there's no reason for her to be upset, there's no reason for her to cry while we list a bunch of reasons everything is ok, but we don't know what she's feeling, how she's feeling. She told us the other night she's afraid to call for us at night when she's getting worked up because she's afraid we will get mad at her because of her problems. Worst.feeling.ever. Let me tell you, nothing like that to take you down a few notches. We tell her as often as we can that she's ok, is going to be ok, we just want to help her.
Our main concern is how much this is going to carry into her adolescence and adulthood. We worry that so many things will affect how she grows up and matures- how well we treat her anxiety, what we do, don't do, say, don't say. She is at the age now where she is starting to notice she is different. She's not dumb-she see's it. Because of that, we are starting to worry that this will lead into depression. Depression at such a young age? I can't even fathom...
I do a lot of praying. I know Ryan does to. Asking for patience, understanding, a night of peace at bedtime, strength to get through the nights that Ella is at her worst. Forgiveness for nights that Ryan and I are at our worst when dealing with her. Answers. Healing. Guidance.
Ryan and I don't quite understand Ella and her anxiety. Neither of us suffer from it so we have no clue what she is feeling or why. But we are trying. I know in the grand scheme of things we could have a lot worse problems. We are thankful in that none of this affects school-like I said, she is so darn smart. School is her thing, its where she thrives. She does so well in school-something we are so proud of. One thing we do notice is that we feel she misses out on fun things, because her anxiety gets the best of her. She has started to attend some friends' birthday parties, but there are some things she doesn't like to do because it is unknown to her, and that scares her.
She is a work in progress. We are all trying so hard to help her. Art therapy is on the agenda next and we have high hopes that this will help. Regardless of whether it works though, we are trying, completely motivated by love. Our hope is that through all of this (even the yelling) that she knows how much we love her.