The musings and rants of Julie Marie Miller, Special Needs Specialist, Parenting Expert & Mental Health Caregiver
  • Julie Marie Miller

Acceptance of good days

Updated: Feb 10, 2019

Her good days are the most difficult days for me.

I know what to do when she's crying and depressed. I hold her, brush her hair, prepare her bath, bring her food on a tray. Like the evening of our annual holiday family tradition, when she'd spent the previous four hours floating through sleep and tears. The entire family was available, this was the best, likely only night, before Christmas to do this activity that is a unique and wonderful bonding experience. But she doesn't want to go; she “can't.” So I sit beside her and reassure her that she could try. That I will help her dress and put on her shoes and that she was safely surrounded by all of her safe people. That at any given moment she felt sad or overstimulated that we would stop and immediately go home. With her little brother's help of some Christmas tunes on the car ride to the mall, enough dopamine was released to begin singing along to the familiar music that always seems to have magical soothing powers.

I know what to do when she's in a rage fit. I have one job: protect her from herself and give that “I got this - DO NOT CALL 9-1-1” stern stare. Like the time we left her biofeedback stress treatment and decided to get lunch from the same French bakery we'd enjoyed the week prior because she was “starving.” Oh dear God. They used a different bread. This “was NOT what [she] ordered!! What the fuck is wrong with these people!” I found myself offering to the owner, “she has Autism... do you perhaps have the same bread you served last week?” “No. Would she like something different? May I refund your money?” No. No. Just please make her stop crying. Just please let her see that it's the same sandwich just on different bread. No. “NO IT ISN'T!!!!” As we leave to drive away, three grown men glance to see if I'm okay but don't act (most people don't except that one school teacher on pick-up duty who called Child Welfare Services that one time a decade or so ago...) She's inconsolable. Still starving so I suggest she try to eat her Caesar salad which she tried until there were no croutons. My dashboard and car's air vents ate it instead. She is now “NOT FUCKING HUNGRY!! Let's just go!!” as rage festers and I caution her that I'm going to run out of options and may need to take her back to the ER. “That's a fucking stupid idea! You know how STUPID that is?! Now what are you doing?” as I pull into a parking lot and park, telling her it isn't safe for me to drive when she's so upset. Then I pointed out chain-food establishments in the parking lot - Subway, Panda Express, Jamba Juice, Starbucks - as I realize I must never take her to anything that doesn't serve franchised meals. Predictable is my safe plan. She continues to scream and yell, “I'm not fucking HUNGRY!! Just drive. Drive. DRIVE NOW!!” So I start my engine and pull through McDonald's drive-thru and order the exact same meal I've been buying her since she was three (we have subsequently developed a “Maddie's favorite orders” for her rage-filled and nonverbal days). She was still angry. Still calling me stupid as I explained that when she behaves this way, I get to make her choices.” Three hours later she ate it as I dropped her off at a friend's house for the afternoon. Poker face mastery.

I know what to do when she's fidgety and confused. Start tasks, invite her to join in, keep her mind focused. “Hey, Alexa, play Guardians of the Galaxy soundtrack.” as I grab my cleaning supplies, vacuum and dust. She almost always joins in, reducing her excess energy and within moments she's focused, even motivated to do something else - yesterday she taught herself to play ukulele.

When I feel completely lost is when she's okay. When she is fine. We have had two fine days in the previous 17. I thought we had other fine days but the day isn't done until it is. One day, when she was fine I had missed an important family event (5 year old niece's birthday party) because she wasn't up to being social but I didn't want to be an hour and a half away. She went with her boyfriend and brother to get breakfast and, upon their return, she was smiling and searching for socks, “we're going ice skating!” she announces, as my swell of confusion, resentment and frustrations pour onto my cheeks. I gasp to catch my own breath as I hear myself say, “I don't understand. [Louder] I do not understand,” as my voice chokes and every underlying emotion bursts through my vocal cords. I ruined that “good day” and we both spent the remainder of that afternoon sobbing together. That day I made a profound shift in my thinking.

Unconditional love means all of her. All of it. I don't get to choose which parts of her illness and disability that I accept. I came up with my own, new mantra that day:

just give her the fucking socks.

The same way I give her what she needs, as she needs it. My prayers and hopes and determination are to never hear my daughter say “I'm sorry,” for any of these extreme ranges of emotions. No one should be sorry for being ill - even when it's a good day.

She will continue to teach me. She will continue to teach others the true art of acceptance as we work to eliminate apologizing through acceptance; her understanding of her own illness astounds me. I pray, hope and ask for support in funding our GoFundMe to get the needed funds for her to tell her own stories in her own words through our future, nonprofit.

Today's blog comes with a book recommendation and just the title is an accurate description of life.

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