Guest Blog by Alicia Huwyler: “From Mary Poppins to The Hulk: Life with a Newly Diagnosed Five-Year-Old” Part One

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23415447_10104775991312145_5748196829979969190_o“Okay, children it’s time to go!” she said ever so calmly in her best Mary Poppins voice. 15 minutes later… “I SAID IT’S TIME TO GO!!!” As the raging Hulk inside burst out of her. #reallifeeveryday

I’m sure many of you have seen the Motherhood Meme going around social media featuring Mary Poppins and The Hulk (also Batman as I’ve seen). I like to think I start every day with the optimism and patience of a modern-day Mary Poppins, however, despite my best efforts of keeping order and focus I often feel a bit more like Rosita from Sing, just with a few less piglets in tow. I’ll admit I am not proud of it, but the Hulk inside me makes an appearance a few times a week regardless of how many times I attempt to keep myself calm and collected, there are days I just can’t hold it together. This is something I struggle with, and as much as I wish I could contain the outbursts prompted by tantrums and unruly children, I find myself praying for God to give me strength. Strength not just to get me through the day, but really the first 2 hours of morning until I successfully walk my child up to her teacher and sign her away for the next four hours. Then, I take can a moment to breath and regroup. I seem to need A LOT of moments to breath and regroup. I mean the fact I am actually able to get my kids to preschool on time EVERY SINGLE MORNING is honestly beyond belief because I have no idea how we get out the door fully dressed, hair and teeth brushed, fed, with shoes (not always on, but at least in hand), backpacks (not always fully packed, but everything at least in the car), and a coffee in my hand.

It’s not just the mornings that are a whirlwind, as soon as we exit school chaos resumes and continues well into the evening when I am about to check out and my girls are still going like the energizer bunny at a speed I wish I could bottle and sell for millions. Of course, a big portion of my hectic life is based on the fact I have three energetic daughters ages 5, 3 and 1, and I am often single handedly trying to keep us afloat from the time they wake until late evening when my hardworking husband graces us with his presence. If that wasn’t enough for a mom to handle, God seems to think my heart and mind can take on a bit more pressure.

You see, my oldest daughter was recently diagnosed with ADHD and Primary Motor Stereotymies. A diagnosis we were not at all surprised with knowing my husband was diagnosed with ADHD as well as a young child. When we finally decided to have her tested six months ago for ADHD, autism, and Tourette’s, we were told that all of these, especially ADHD tend to go hand in hand with epilepsy, which she was diagnosed with 3 years ago at the age of 2. My husband and I had suspected some underlying issues present in Ashlyn since she was a baby, some including attention and focus, short temper, intense irritability, fidgeting, chewing, ticks and unconscious tendencies, highly activeness, impulsiveness, and oppositional defiance. Some of these tendencies and behaviors have intensified since her seizures began at the age of 2, and some tendencies are newer, and more noticeable just in the last year. But, not until recently did we feel the need to commit her to undergoing the behavioral and neurological testing that is required.

A big part of me was hesitant to even bring up the idea to our pediatric neurologist because of the reactions I had gotten from her teachers last year and our friends. They all would tell me “Oh, but she is so wonderful. There is no way such a kind sweet girl could have any of those issues”. As though children with these “disabilities” aren’t also capable of being kind, sweet, and companionate. It’s true, Ashlyn is a kindhearted, full of life, imaginative, social, sweet girl who happens to also be incredibly active and short tempered. She is the child that wants to know and be friends with every single person that she comes in contact with. She portrays such empathy and sympathy for others, especially her peers that at first her neurologist felt confident without even testing her that autism couldn’t possibly be present, and even more so when we discussed her extreme social abilities. Yet, that being said Ashlyn displays several symptoms associated with all three of the categories we felt she could possibly be living with.

Those few who are in close contact with us are more familiar with the real Ashlyn as a whole. The Ashlyn who is laughing one moment and then spirals into a full meltdown in a matter of seconds. Maybe because she didn’t get the bath towel she wanted, because I told her she couldn’t wear shorts and tank top to school on a day that wasn’t supposed to get above 45degrees, because our afternoon routine was off by 30 minutes, because if she doesn’t finish her dinner she doesn’t get a bedtime book or song. For Ashlyn, it’s the small things in life that she holds on to, and if there is a change, or even the slightest glitch in how we react to her in a situation she is a part of there is nothing and no one that can stop the meltdown from happening. It can happen in the grocery store, playground, doctor’s office, in the car, and most often at home. My poor neighbors I’m sure have thought we were being held captive and tormented from the intense screaming that rings from our house during these episodes. Surprisingly the cops have never come to our house to check on us…honestly this really does surprise me!

It breaks my heart when meltdowns occur, because she does a 180 and becomes a whole other person. She kicks, she screams, and throw things, hits us, and hyperventilates to the point we become afraid a seizure will begin. Often after 30 minutes if not more Jason or I are able to calm her down enough to communicate with her, which may or may not restart the fit. It’s a long exhausting process that we are still learning to deal with. What works one time to ease her fits doesn’t always work other times. We will be working with a behavior specialist in the near future to address and experiment with ways to ease and resolve her problematic times, as well as addressing other major symptoms.

On the flipside, when Ashlyn isn’t mid meltdown we attempt to manage her attention issues. Circle back to my Mary Poppins to Hulk moments because no matter how many times I tell Ashlyn to “get dressed”, “get your shoes on”, “where is your water bottle?”, “where is your school folder?”, “Ashlyn, we need to go!” “ASHLYN! We need to go!” “ASHLYN!!!! WE. NEED. TO. GO!!!!” inevitably Ashlyn’s attention and focus are sidetracked. If I ever had to compare Ashlyn to one Disney character I wish I could say she was most like Anna from Frozen, but though they share a lot of characteristics like compassion, kindness, adventure, and determination, she also is exactly like Dog in the movie UP. SQUIREL!!! Ashlyn’s capability of staying attentive and focused has become increasingly more of an issue as she is getting older, and again we can attribute some of her ADHD to her seizures as we have discussed with her doctors.

 

Stay tuned for Part Two to read about how we handled her initial diagnosis and what we’ve done to improve our lives since then…

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