Sunday, September 8, 2013

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

I began my life as a child with invisible challenges, illnesses. My parents worked with my doctors to make sure that I was able to have as normal, unlimited childhood as possible - despite doctors, surgeries and occasional precautions on sports. I expected to meet adulthood with the same challenges in place.

What I didn't consider was that I could end up in my parents' shoes ... raising a child with invisible challenges, invisible illnesses. When I wrote my first "30 Things..." post a few years ago, my daughter Audrey leaned over my shoulder and read it aloud. When she finished, she turned to me and said, "Mom ... I have an invisible illness too! We're alike!"

Last year I wrote about the stages of grief in relation to invisible illnesses through the eyes of a five year old in Maddie Portrays the Stages of Grief.

I know using the term illness to refer to neurodevelopmental challenges, genetic differences, severe allergies and the like may be offensive to some. And I really do get this. These kids aren't ill ... they are just themselves and they see the world in their own way. But there is a subset of families that have kids with invisible challenges AND parents with invisible illnesses.

When I spoke with parents in a Sensory Processing Disorder support group I was shocked to see how many of the parents there had Fibromyalgia, Crohn's Disease, IBS, severe anaphylaxis allergies, migraines, depression, bipolar disorder, anxiety. When my often isolated child reached out to read my Invisible Illness post, Audrey found a connection with me. She was no longer alone ... and she made that connection on her own. Via my Invisible Illness Awareness Week post, my baby found a common language we could share.

Edited to add ... my thoughtful kiddos suggested I share the book we wrote together with you. If you have a moment, take a peek at This is My Mom .

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

1. The illnesses we live with are ... Sensory Processing Disorder, asthma, allergies, anxiety and neurodevelopmental challenges.

2. We got a diagnosis at the age of … asthma/allergies at 5 years, SPD at age 6, anxiety and neurodevelopmental challenges are still being assessed.

3. But we have observed/experienced symptoms since ... birth. From her very first nursing session she acted like a neurologically premature infant even tho she was born full term. I remember that Audrey arced her tiny body away from me while she nursed, unable to handle too much physical contact at once. We soon learned not to make eye contact AND talk at the same time, and gently got her used to being held, talked to and touched. With the help of lactation consultants we were able to have a long nursing experience but the close contact was not always easy for Audrey. Having worked in the past with former preemies, I was amazed at how well she responded to the same socialization techniques I used with those itty bitties.

4. The biggest adjustment I’ve had to make as a parent is ...finding healthy ways to deal with my own emotions regarding our challenges. It's too easy to eat/shop/drink/over-exercise/read/facebook your pain, grief, exasperation and anger away. Parents need to find healthy ways to cope. We WILL slip into negative habits but it's really important that parent's forgive themselves for those lapses, find support to help pull out of the spiral they find themselves in, give themselves permission to grieve and then find the strength to head back towards healthy coping.

5. Most people assume ... my child is choosing to "throw tantrums". I wish they could see. I wish they could see her grieve after, apologizing, heartbroken, begging me to help her stop feeling this way. I wish they could see the overwhelming pain in her eyes as the sounds and sights and lights and smells and social expectations and excitement just melt her down. I wish they could hear her sobbing, "I ruin every single birthday party! Why can't I be like the other kids?"

Sound familiar? Read this When Do Temper Tantrums Signal Something Serious?

Some people assume I'm helicopter parenting, protecting her needlessly because of my own issues. I wish they could see how free I let her be, climbing trees, riding scooters and bikes in the middle of the street, swinging upside down from the top of the swingset at the playground while other parents cluck at me and shake their heads. I wish they could see me hug her gently but send her back onto the practice mat because she made a commitment to her team. I wish they could see.

6. The hardest part about mornings are... new for us. Suddenly this year Audrey is self-conscious about using her 504 plan accommodations. NOW what? I'm seriously stumped here, people. After being oblivious to the other kids for years, now she won't bring her noise cancelling headphones to school or keep her snack on her desk to prevent hunger-induced meltdowns. Ack.

7. The hardest part about nights are ... when my child melts down right before bedtime. She's asked me not to describe it but it very often ends up with her being physically and emotionally worn out, her father getting completely overwhelmed, her younger sister frightened (and then up til midnight) and me in severe emotional and physical pain. I can handle it well 95% of the times but when I fail her, when I meltdown myself and become the parent I swore I never would be, it breaks my heart and hers. Audrey also gets night terrors after stressful days, changes in routine or growth spurts.

8. Gadgets we couldn't live without are ... our travel sized acupuncture mat is fantastic for dealing with staying away from home. Noise cancelling headphones help not just for her, but for her younger sister when the eldest is melting down loudly. A stretchy jersey twin sheet is stretchy enough to wrap herself up tightly from head to toe, but thin enough that she doesn't get too hot. By saving electronics for extreme situations (car rides over 30 minutes, airline flights, hotel stays, long competition days, waits at the doctors) we're able to keep phones and tablets as novel distractions.

9. A daily routine we can’t live without is ... our bedtime routine. Before bed each child gets to pick a song for me to sing to them and then I sing one of my own choosing (Audrey and her sister share a room). When they are particularly strained or upset about we have a special prayer we sing in Sanskrit that helps them let go and relax. Loosely translated it means, "May all the beings be happy, healthy and free from pain".

10. A children’s book or TV show that helps my child cope is ... anything familiar or repetitive. Audrey deals with stress in a loud, unpredictable world all day long. Shows with repetitive plots (Scooby Doo or Too Cute on the Animal Channel) are comforting and relaxing for her. Audrey also enjoys putting on shows she enjoyed when she was younger that are simple, slower paced and familiar.

11. Regarding alternative treatments … we support our child as best we can using whatever modalities help. Neurofeedback sessions have helped to reduce anxiety and night terrors. Monthly chiropractic visits stimulate her sympathetic and parasympathetic nervous systems. Herbal teas and remedies soothe scratchy allergy throats that a child with sensory issues might fixate. We also use Aryuvedic techniques in choosing the seasonings and flavors of what we eat.

12. My child’s illness affects their friendships/social lives in this way ... my child has difficulty making and keeping friends at school. Taking judo classes and competing as part of a team has helped Audrey develop confidence, improve her one-on-one personal interactions and make real friends. My child's teammates love and accept her as the bright, fun child her classmates never get to see. Her judo coaches have provided the team with scripts for introducing themselves and welcoming visiting athletes to the dojo: "Hello, my name is Audrey (handshake), welcome to Pedro's Judo! (bow)." My sister and I were giddy this summer when we saw Audrey walk up to kids on the beach and say, "Hi! My name's Audrey ... what's yours?" Her coaches taught her a script ... and it helped her make friends. Unbelievable!

13. Regarding school and learning ... we struggle to get our child the help she needs to best succeed a school. Since Audrey has such a strong desire to succeed, she uses every bit of energy she has to avoid melting down at school. It's difficult for school staff to see how very miserable she is, and how she falls apart the moment she gets home. Some parents refer to this as "holding it together" or "maintaining". Either way, it ends up with a miserable kiddo, exhausted parents and teachers who are unable to assess the trouble brewing underneath the supposedly happy and quiet facade.

14. People would be surprised to know ... my amazing child can pick up and hold the most fragile bugs with no problem. Since Audrey was a toddler dragonflies have landed on her all the time! We call her the Bug Whisperer. She's also a fierce judo player and loves fighting with her team.

15. The hardest thing to accept about our reality has been ... that we weren't imagining it. That we were right, that this is real. That this is here. It's also hard to accept when people we care about roll their eyes and suggest that what she really needs is a "firmer hand". Criticizing our parenting doesn't help us, folks. It just makes us feel lonely, judged and isolated. Good job.

16. Something I never thought we could do with this illness that we DID do was ... we never thought she would be able to enjoy going to the movies as a family - early attempts were disastrous . Thanks to AMC theaters Sensory Friendly Movie program, we just enjoyed our first family movie in years! Check out this post for more information on this awesome program ... New to Sensory Friendly Movies?

17. Public awareness about this illness is ... well, huh. I'd have to say it varies. Libraries and movie theaters are offering Sensory Friendly experiences. There are sensory playgrounds, sensory toys, sensory accommodations ... but look in the new DSM-V (the fifth edition of the American Psychiatric Association's (APA) Diagnostic and Statistical Manual of Mental Disorders). Well, where is it? SPD is still not a recognized diagnosis ... which means that there are no diagnostic codes. A doctor can't send a child to OT for SPD ... they can type in a diagnostic code for movement disorder, ADD/ADHD, fine motor delay or something similar. Assuming the child overlaps those diagnostic codes a bit ... but it's tricky.

18. Something my child wants to do but is unable to do is ... enjoy school, birthday parties, play dates and things like rollerskating and bowling "like the other kids, Mom". Without being overwhelmed and melting down for hours after. A 24 hr camping trip with her Brownie troop was AMAZING ... and she broke down into a horrible painful meltdown for the next 24 hours.

19. It was really overwhelming to see my child ... enjoy her team activities. At Junior Nationals this summer, I cried hard, ugly tears when I looked across the mats and saw her laughing, warming up and playing with her teammates. I never thought I would see her as part of a team, respected and trusted by her peers.

20. An activity my child loves and succeeds at is ... swimming, creative writing, judo and chorus.

21. If I could wish for one thing for my child to experience ... it would be to have a group of close, loyal friends.

22. My child’s illness has taught me ... to try every day forgive myself. Parenting a child with challenges - especially when you are chronically ill yourself - does not always bring out the best in anyone.

23. Want to know a secret? One thing people say that gets under my skin is ... "Well, ALL kids have trouble paying attention/get worried/have bad dreams". Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.

24. But I love it when people ... see the beauty in Audrey's heart and appreciate how awesome she is - especially after they've seen her at her worst.

25. A phrase/story that my family uses to feel strong and close is... we refer to ourselves as animals. My Audrey is like a hedgehog - prickly and small, unusual, shy and very bright with a tender underbelly, my child needs a patient hand to encourage her to come out and play. My younger child is like a puppy - loud, happy, loyal, loving and bouncy with a good understanding of how to play games, join in with friends and enjoy others. I'm apparently the grumpy mama bear... but that's pretty self explanatory. Using these images helps my daughters understand each other better.

26. When someone is wondering if their child has an invisible illness I’d like to tell them ... where to go to get help and support. It's lonely out there, people. Talk to me, I'm here ... and if I don't have the answers you need I will FIND them for you.

27. Something that has surprised me about parenting a child with an invisible illness is ... how many people second guess my choices, my assertions about how severe her meltdowns are.

28. The nicest thing someone did for me or my child when we were under stress ... listen. hear me. No, REALLY listen ... with the belief that I really do know my child best.

29. I’m involved with Invisible Illness Week because ... I have my own invisible illness and I am proud to spread awareness with others.

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

 **I am in no way connected or receive reimbursement/product/kickbacks/magic powers from any of the companies mentioned here.**


  1. Oh Melissa!! My heart breaks over and over reading this posts. It breaks for Audrey, for how difficult her life can be for her. It breaks for you, knowing the amount of emotional and physical strength it takes to parent a child with an invisible illness. And it breaks for both me, and my daughter, because I see so many similarities between our girls. My hope is that some day, we won't need an "awareness" week or month or year...because I hope that by doing this now, people will understand better in the future.

  2. Thank you, sweetie <3 I'm thankful she is growing up in today's world and 30 years ago. Things are starting to change and adapt to the needs of reality - rather than force children to conform to one norm :)

  3. I loved #10. It's true of all children, and was a totally new way of understanding that for me. Definitely truer of children who struggle with the chaos around them. Thanks for opening my eyes to new understandings.

  4. You're welcome Dee :) And thank you for making me smile after a looooooooooong day!

  5. Hi, Melissa,

    I read your post with interest, thanks for sharing. My daughter and I have been diagnosed with 3 invisible illnesses within the past 7 years...I have one, she has two. I wish I could take her illnesses from her, but in a strange way, I am glad I have my own illness to sympathize with her. When she says, "you don't know how it feels"...I tell her, yes I do...we have the same thing, and I know it's hard, etc.
    Keep up the great work parenting your sweet little ones. I think you included a lot of excellent ideas for other parents dealing with similar issues. :)


  6. oh melissa, what a sacred treasure to have found you. i've found plenty of blogs about others walking through invisible illness. but yours is the first who understands what it's like to be the one with chronic illness AND the care giver (to a precious one also with invisible illness).

    thank you so much for sharing your story,

  7. I can't thank you enough for sharing this! As a mother of a 6-year-old who has been labeled "OCD, perfectionist and 'super-high' anxiety" by a counselor, I completely understand the isolation and misunderstanding (especially by the schools!) that comes with invisible illnesses. We are currently waiting for our son to be clinically evaluated, hoping at once that whatever official labels we receive will offer him help and that we can shelter him from any further stigma such labels might induce. It is emotionally overwhelming - thank you for so eloquently reminding me that we really are NOT alone.