Monday, September 9, 2013

Guest Post! Scarlett's 30 Things About My Child’s Invisible Illness You May Not Know

As I mentioned in my own 30 Things About My Child's Invisible Illness post I am extremely lucky to have supportive friends to help me navigate the jungles of parenting. Sometimes they are simply amazing friends who understand. Other times they have a child like mine ... and a precious few have a daughter a bit older than mine and can lend an ear as I rip my hair out, parenting my growing girl-children.

This lovely guest author is all of the above. I'm so thankful to Scarlett for sharing her perspective on her daughter's invisible illnesses.

Please join me in learning a bit more about how Invisible Illnesses affect children and their families...

30 Things About My Child’s Invisible Illness You May Not Know

1. The illnesses we live with are ... anxiety, learning disabilities, severe anaphylaxis tree nut allergy, asthma

2. We got a diagnosis at the age of … eight. It feels like it was a very, very long time to get to that diagnosis. I remember when I told Missy about her learning disability. In an instant, she looked like the weight of the world had just been lifted off her little shoulders. The Disney Channel had been airing a public service announcement about Shake It Up’s Bella Thorne and how she dealt with dyslexia growing up. Knowing that there was something Missy could do about it, knowing that this was a beginning instead of the end, took so much stress away from her.

3. But we have observed/experienced symptoms since ... she was a toddler. I have always described Missy as going from 0 to 60 in point-two seconds. For so long I would say, she lives constantly “on edge”, a raw nerve. And because of that, she was libel to melt down or freak out, at the drop of a hat. I had no idea at the time that it was the anxiety causing the raw nerves.

4. The biggest adjustment I’ve had to make as a parent is… learning to advocate for my child. We noticed when Missy was in the first grade that she would mix up her letters. She mixed up b’s and d’s, m’s and w’s. It got increasingly harder for her to study and remember her spelling words. It was difficult for her to even copy words that someone else had written. She was transposing numbers. Instead of writing 302, she’d write 320. We spoke to Missy’s teacher who assured us that Missy was a VERY bright girl and that transposing letters and numbers and writing letters backwards was normal up into the third grade. So we waited. I spoke to the second grade teacher because spelling tests were becoming increasingly difficult. And as the learning disability presented itself more fully, the anxiety also began to make itself more evident. I wrote the second grade teacher a note asking about testing Missy for dyslexia. Her response was that we should continue to wait because, as the first grade teacher said, some of these “symptoms” are normal into the third grade. What I didn’t realize was that by me writing that note, she was required by law to get the process of testing underway. There was SO much I didn’t know at the time.

It took a lot of reading and research and talking with people who knew way more than I did for me to understand what my rights were as a parent. We had Missy tested on our own and through the school. I learned to ask for the services and accommodations Missy needed in school. I learned to follow my own heart (and her doctor’s orders) to determine what those services and accommodations should be. I had to learn that while the school personnel are there to make sure my child succeeds (after all, the better she does, the better scores she gives them on standardized tests, and the better they look), *I* am the person who knows Missy best. Therefore, I am in the unique position of knowing better than anyone else how she will do in different situations and what she needs to thrive. And I have equal say in what happens with my child when she is in school.

5. Most people assume … She’s simply misbehaving. Missy likes rules. Rules help keep her calm. Rules help her to know what is expected. Of course, this means that when people break the rules, she feels chaotic. She gets so stressed out and anxious that she can’t handle it. Additionally, she spends all her energy trying to keep it together during the day that by the time she gets out of school, things tend to go haywire and she fights, argues, or has a meltdown. She’s not trying to fight. And she’s actually much better this year than in previous years. Plus, I’ve learned that if she can run around after school and blow off a little steam, the rest of her afternoon goes much more smoothly. But she’s worked so hard to keep it all together during the day that she’s like an over-inflated balloon. One more breath and she bursts. The other moms at parent pickup look at me sometimes like I’m a horrible mother. Like I’m indulging her and like she’s spoiled and misbehaving. Yes, I know what those facial expressions look like. I’ve been guilty of giving them myself. But she’s none of those things. She’s just a ten year old with anxiety who has a mom doing the best she can.

6. The hardest part about mornings is… sticking to a routine. The routine makes the morning go smoothly (the same way it does in any other household). But not being a morning person by nature, Missy would much rather camp out in front of the tv in the morning and wake up slowly rather than getting ready right away and taking any free time that’s left over when all the necessary stuff is done. This push-back from her occasionally renders up late for school (not so late that she’s “tardy”, but late in that the first bell has already rung to let the kids get to their lockers. This is in complete opposition to Missy’s desire to be on time and follow the rules.

7. The hardest part about nights is ... When Missy gets so anxious that she can’t sleep. The knowledge that she needs to get to sleep only makes her more anxious….which makes her unable to sleep. It’s a horrid cycle for her. And as she gets more and more tired, she gets closer and closer to a melt down. And when she does melt, there are hysterics and hyperventilating and self-loathing and statements like “Why can’t I just sleep at night like everyone else?”

8. Gadgets we couldn't live without are ... The iPod & my phone. Without the iPod we wouldn’t have the audiobooks she clings to. Patience is not a Missy virtue. But playing a game on my phone helps her to have something completely innocuous to concentrate on.

9. A daily routine we can’t live without is ... I wouldn’t say that we *can’t* live without it because we can. But, during the school year, on school nights, my husband or I go upstairs with Missy and read to her. Then she reads to us. Then, when she gets into bed, she’s allowed to read by herself with her flashlight on and the room lights off. She gets instrumental music, a fan, and a number of night lights (she hates the dark). Without the music, noise, & lights, she wouldn’t be able to sleep. And the reading helps her settle and clear her mind before going to bed. We start this process at 8:30, which is early for a 10 year old, but she doesn’t end up with lights off until 9:30 and flashlight off at 10. Thankfully she is able to sleep until 7 a.m. which allows her a full night’s sleep.

10. A children’s book or TV show that helps my child cope is ... Harry Potter. I think it helps her feel safe that she knows the stories so well. It’s something she has read, listened to, and watched over and over so she feels comfortable letting herself just dissolve into that world. Plus, good wins.

11. Regarding alternative treatments … We are open to alternative treatments. My husband and I have agreed that we do not want to give Missy traditional pharmaceuticals unless absolutely necessary. So right now, she sees a counselor once a month. That’s her safe place to be able to unload everything that makes her anxious. Plus, her counselor teaches her deep breathing, meditation, and yoga techniques to use when she’s feeling anxious. Aside from that, we use homeopathic stress relief pills that are all natural, made from flower essence. They make Missy feel proactive about keeping on top of her illness. She also uses gum to relax in school; it helps her focus, and she stashes stress balls in her desk, locker, and bag. And when those things aren’t enough, there’s a punching bag in our living room ready to be any stressor that needs a beating. Regular exercise at taekwondo helps to regulate stress and provide a healthy outlet for her restlessness.

12. My child’s illness affects their friendships/social lives in this way ... She’s great at making friends and being a good friend, however, Missy often gets overwhelmed in social situations. When she goes to a Scout meeting, the chaos of the situation overwhelms her to the point where she sometimes has to remove herself from the group and find some solitude and quiet. Unfortunately, that makes her feel left out (even though it was her choice to leave the group, she doesn’t feel it’s a choice because it’s something she needs to do for her sanity.) She also comes across as a goody two shoes and tattle tale because of her need for rules. I can’t imagine that goes over well with her peers.

13. Regarding school and learning ... It took a lot to get Missy the services she needed at school. But once we did, she truly blossomed. That doesn’t mean that things are perfect, she still has a ways to go. She still writes her b’s and d’s backwards and she still spells like a second/third grader. And she still needs help getting the thoughts from her head onto the paper. But we did discover that she is incredibly bright. If she weren’t, we might not have noticed the learning disability as early as we did. But the progress she made over the course of one school year was astounding. Her teacher thinks that she may not need any additional serves by the seventh grade!

14. People would be surprised to know ... how incredibly sensitive she is. One mistake sends her on a self-esteem downward spiral. Comments that other kids brush off, she takes quite literally and often jumps to the worst case scenario. Once, a teacher told her that she needed to learn her times tables or else she’d fall behind. Missy came home crying about how she was going to have to stay back and repeat 4th grade. This was September. 4th grade had JUST started! And already she was concerned that she was going to have to repeat the grade. She didn’t, by the way. And when she does something she knows is wrong, her guilt eats at her. There is nothing like hearing your own child wailing about how horrible a person she is.

15. The hardest thing to accept about our reality has been ... that not everyone will understand, no matter how many times you explain it to them. Some people just don’t get it. Or they don’t want to get it. And that’s just the reality of life.

16. Something I never thought she could do with this illness that she DID do was ... Well, I never thought I’d see my daughter come home with top marks for a writing assignment. It takes her three times as long to do any writing assignment and it takes all of her energy to be able to focus her writing and spelling. And her learning disability makes it such that she has all of these really amazing ideas in her head, but they get lost between her brain and her fingers whenever she tries to put them down on paper. And I never thought she’d read books with hundreds of pages in them. Tell that to the dog-eared copies of the Percy Jackson series that she devours.

17. Public awareness about this illness is ... Crucial. No one thinks about a child having anxiety. Who thinks that an 8, 9, or 10 year old might have anxiety? I certainly didn’t before we got my child’s diagnosis. They are quick to jump to conclusion about behavior and don’t look to see what’s behind the behavior.

18. Something my child wants to do but is unable to do is ... have a slumber party without tears. Whether at our house or someone else’s house, she usually ends up in tears at some point. She gets overtired and over-stimulated and anxious because she’s not sleeping in her own bed with the sounds and sensations that she’s used to.

19. It was really overwhelming to see my child ... earn her first degree black belt in taekwondo. She was terrified for her test. So terrified, in fact, that she pushed her test off for two months because she couldn’t take the pressure. But she worked hard in class and outside of class and after three years of working her tail off, learning, competing…..she passed her test with flying colors. During her belt ceremony, I was actually in tears. She had worked so hard and that belt was a physical representation of that work. It was something she could be so proud of. Now, I wouldn’t care if she was a lousy martial artist. But the fact is that she’s actually a damn good one. Her success gives her a boost in confidence and self-esteem. And that, by itself makes it all worthwhile.

20. An activity my child loves and succeeds at is ... taekwondo. Watching her perform and compete actually gives me chills. And she’s always so proud of herself when she does well. Although being the perfectionist she is, she’s also just as hard on herself when she messes up. But there are far more successes than mess ups. So in the end, it’s all good.

21. If I could wish for one thing for my child to experience ... Complete and utter joy. She’s such a serious child and I wish she could experience one day without worry, without a self-esteem that sinks thanks to one mistake. Or maybe it would be to be able to walk into a bakery and order whatever her stomach and taste buds desire without fear of what nut it contains or what cross contamination might have occurred.

22. My child’s illness has taught me ... to slow down and explain.

23. Want to know a secret? One thing people say that gets under my skin is ... (This goes with #22.) So often, Missy gets anxious because she doesn’t have enough information to make a decision. The more information she has, the less likely she is to panic and get stressed out. For most parents, they tell their kid ‘no’ and that’s all there is to it. One word answers (even if they’re yes) don’t work for Missy. She needs more information. So when people turn around and say, “just tell her no”, it’s so irritating because that doesn’t work for us.

24. But I love it when people ... consider my daughter’s nut allergy when they’re planning an event, snack, etc. People who know where they bought something, who provide me with ingredient labels from packages, they are life savers. They are the people who try to make my life and Missy’s life easier.

25. A phrase/story that my family uses to feel strong and close is... Water off a duck’s back. My daughter loves ducks (some might call it an obsession) so when Missy is feeling particularly sensitive and prickles at everything, I try to remind her to let things roll off like water off a duck’s back.

26. When someone is wondering if their child has an invisible illness I’d like to tell them ... Find out. It’s the first step and learning how to make life better. The more information you have, the easier it is to learn to cope.

27. Something that has surprised me about parenting a child with an invisible illness is ... how horrible a mother I feel like some times. When I lose my temper because my own nerves are shot or because I’ve had such a horrid day/week/month, it’s not just me who suffers. Chances are she, Missy already feels badly about doing whatever it is that drove me nuts. Losing my temper with her only makes her feel worse, which, in turn, makes me feel worse.

28. The nicest thing someone did for me or my child when we were under stress ... One night, Missy had a sleepover at her bff’s house – a horrible anxiety-producing activity that she keeps trying because she desperately wants to have those normal girly experiences. Bff’s mom sat with her, until the wee hours of the morning, with Missy in tears and going back and forth about whether or not she wanted to go home. Together, Bff’s mom and I decided that Missy needed to stay to prove to herself that she could. Bff’s mom (and dad) reassured her over and over that she was safe and that her dad and I were safe and that she was okay to stay. She did make it through the night. Bff’s mom then spent about an hour texting with me to reassure me that Missy was okay and that they love Missy and want to do all they can possibly do to help her feel safe and comfortable at their house because they consider her a part of their family. To have another family care that much about my child and her emotional stability was the most amazing show of friendship. I can never thank her/them enough for that.

29. I’m involved with Invisible Illness Week because ... like with Missy, people can only make good decisions based on the information they have. I want people to understand what it’s like for kids like Missy. They don’t choose to feel the way they do, but it’s often more difficult for a child to handle because they aren’t always able to adequately explain how they feel or why they react the way they do.

30. The fact that you read this list makes me feel .... hopeful. .

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