7.13.2016

Ella's Story

I know I typically blog about fashion and beauty, but sometimes it's nice to take a step away and chat about something different. After all, this is a platform that allows me to reach a large amount of people (large to me, at least) so why not take advantage of it?

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. 











12 comments:

  1. As one of her grandmothers I have seen Ella at her best and her worst. Nothing is worse then seeing your sweet grandchild suffer and you can't do anything about it to ease her fears. Some one once told me that her eating was a sign of her trying to control the adults. Believe me that is not the case. I have seen her make great strides in her life the last year and hope she can get the help she needs. She is a wonderful, sweet little girl and her grandfather and I love her very very much

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  2. Thank you for posting this. My son is just shy of 18 months but I have noticed very similar behavior with him. He only eats certain things (yogurt and crackers being mainstays) and he practices extreme caution in everything he does. I always thought it was strange for a little boy to be so cautious. He has a thing with textures (he will only wear certain pairs of shoes and he HAS TO have socks on with them or else he melts down). I had no clue that Sensory Processing Disorder was a thing, but I now feel that I can start asking his pediatrician more informed questions. I hope that things continue to improve with Ella. You and Ryan are great people and I am positive that you are great parents.

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  3. As a mom of a (very smart) 13 year old with anxiety, depression, and ADHD I can empathize with you. We have been through several therapists and have tried art, musics, and horse therapy. The last two years have been very rough as her anxiety has now affected school--most days she would refuse to go. She has also developed a very picky palate. All I can do is keep praying. I will keep you and your daughter in my prayers as well!

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  4. Ella is so lucky to have parents like you. She is clearly an amazing girl, but one that needs support. Keep it up, Mama, and she's sure to live a happy life.

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  5. My son was a terrible eater for a couple of years and also showed lots of signs of mild anxiety. Over the past couple months (he just turned 5) he has had a great transformation with regards to foods. He still gets worked up sometimes over things that he is anxious about, but something finally 'clicked' with food and it has been a game changer. We had probably 2.5 years of the same peanut butter sandwiches, yogurt, and fruit... and believe me it was SO FRUSTRATING. Good luck to you and your family:) Your daughter is adorable, by the way.

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  6. Hi there ... definitely keep trying to find the right therapist ... a child therapist who specializes in anxiety if you can. Whatever is going on can be worked through in therapy. I have dealt with anxiety and it's awful, and it sounds like she has a bad case. Medicine can help calm you but you must attack the root cause. Anxiety comes from somewhere and can be controlled, but it needs to be addressed by a professional. You've done a lot of wonderful things ... and art therapy sounds good, but I think you need to have a therapist work with Ella on specific issues that worry her. As a parent, especially if you don't have anxiety, my advice would be to get on Amazon and get some books about child anxiety and just educate yourselves as much as you can- I think that will help you support her. My sister had anxiety as a child but it wasn't until she was older that we realized what it was ... she still deals with it, but she sees a therapist and uses medication to keep it under control, because it can control your life. Best of luck!

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  7. I don't really have any advice that will help but just wanted to say that you know your child better than anyone so don't give up when Doctors' say she will grow out of it. I do have two teenage boys and you are so right in thinking NOW is the time to do something. Teenage years are hard even without anxiety. I know it wasn't easy to post this but just know that you are doing the right things, even on those frustrating days :)

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  8. Thank you for being so poignant and honest about your struggles being a parent of a child with anxiety. When my oldest started having some "issues", we were told similar things..."she will grow out of it she is just shy, she is being manipulative, etc." I knew in my heart that wasn't the answer and fortunately she had a wonderful guidance counselor in kindergarten who gave us a workbook to use. It is called "What to do when you worry too much: A kids guide to dealing with anxiety" I would recommend it as it was very helpful in getting all of us to recognize her anxiety triggers and find ways to deal with them. There is no way to reason with them about why their fears are are not realistic. This book helped to slow down the amount of time we spent trying to convince (aka argue) with her. For our daughter it also helped to use bible verses that reminded her that God was in control and he cared about her worries. I would highlight the verses in her bible and she would take it to school every day ( despite the fact she couldn't actually read yet :-). Reassure Ella that she isn't the only little girl who feels that way. My daughter used to always say " my brain is different than everyone else's. Why did God make my brain different?" These girls' brains are different and God gave them the ability to be great thinkers and when they find a way to tap into the positive aspect of this they will be able to accomplish more than they dreamed. You are tremendous parents and just the mom and dad she needs to get her through this!

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  9. One of my sons has SPD and as he has gotten older it has gotten better. My other son had some anxiety around 6 years old and we used a book called: What to do when you worry too much: a kid's guide to overcoming anxiety by Dawn Huebner. I got it on Amazon and it was a life saver. We used it together and he was able to deal with his anxiety so much more easily... like Ella my son is intelligent and knew what was going on. The best of luck! It can be heart breaking as parents to see your kiddos go through such hurt and not be able to get answers when you know something is not right.

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  10. As a mommy with a son with Autism I totally get it. The anxiety, sensory, eating issues and obsessive behaviors, etc.. (Please don't think I am saying your child has ASD, I'm just saying mine experiences those issues as well as part of his ASD.)

    Sounds like you're on top of things and you're making strides towards helping her get her anxiety and sensory issues to a manageable level . And I agree as a parent, not knowing what to do can really be humbling and heart-wrenching.

    I would contact your child's school psychologist and have a discussion with them. They might be able to test her for things and she may be able to get some therapies through school.

    Also if you are getting nowhere with your regular pediatrician with her issues and your concerns about them, you need to seek out a DEVLEOPMENTAL PEDIATRICIAN, they will be able to steer you in the right direction to the right testing and therapies for your child and give you scripts for them so that they may be covered under insurance.

    Great idea on the art therapy! I would also look into music therapy as well if sound can be an issue. And definitely try finding another child therapist- one that she feels comfortable with.

    Also try looking into a holistic pediatrician- they can help with natural vitamins that help with her issues like anxiety and sleeping. I know melatonin is popular for kids who have trouble calming their busy little brains to sleep.

    Look up FB boards on SPD- other mommies in your situation are usually a wealth of knowledge.


    You're doing a great job momma! Best of luck to you and your beautiful daughter.

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  11. Perhaps we should compare notes sometime ;)...

    At 18 months old Aariana began walking. As time went on it was clear she was intelligent, but a little slower than the other kids. She always had a sensory issues with touch, so buying clothes is never easy. Her vocabulary is pretty great, but at 11 years old she still has issues with pronounciation. She's heavily socially awkward, and yes, displays many of the same anxiety issues your daughter has. And then there is the toe walking, and odd jerky walking in circles she tends to do when she's thinking.

    I've always known something was wrong...and had the same issues you do with doctors and their "oh, she'll grow out of it" mentality. At 6 years old we took her to Kennedy Kreiger in Baltimore for evaluation. They ran her through a battery of tests, but I could tell she was on her best behavior...they diagnosed her with ADHD and called it a case. My gut was telling me they were wrong, that they didn't have the whole story. We sent her to Montessori knowing that putting her in a public school was like an invitation for depression and bullying.

    Now of course she's 11. Two years ago she started getting physical tics. Facial movements, shaking her hand, and then the worst one of them all...high pitched squea king that happens several times through out the day. She tends to cycle through different tics, and that one has improved a lot since it began, but it has been ongoing for about a year now. Add that to the typical Nori hardheadedness (hah!) And her insistance on being a vegitarian because she feels really bad for the animals (she's obsessed with cats in particular) and i drew the line, fed up and completely frustrated. But i couldnt blame the docs at Kennedy Kreiger...most of this stuff only started showing up shortly after she turned 9, right around the time the very early stages of puberty started kicking in. I finally took her to a local pediatric psychiatrist who (finally) gave her a provisional diagnosis of Aspergers syndrome. ..which I knew was the issue years ago but couldn't get a doctor to listen. She's finally medicated to control the anxiety issues and tics, and treat the ADHD, which has helped immensely as far as much of the anxiety goes, but she still struggles with self worth issues, and some of the tics. We are still working on finding the best treatment for her, but trying to find the right help that is local (an hours drive or less) is a serious challenge.

    My advice...go with your gut. Don't stop seeking the right help...demand it. You're doing great! Never let anyone, especially a doctor or educator tell you differently. Never let her see the fear behind the smile, and just keep encouraging. Know that you have family with similar struggles you can talk to (oh, and if you happen to find a good behavioral psychiatrist down your way let me know... ;)). Take things one day at a time. And just keep telling her how awesome, wonderful, smart and beautiful she is...because theres no question that she is!

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