Learning from failure sets me up for future success as a parent
How I maintain my relationship with my AADC-deficient daughter
The sun hadn’t even risen yet, but my daughter, Rylae-Ann, was already melting down about changing out of her pajamas. By the time we got downstairs to start breakfast, her mood had only soured. By noon, everyone in the house had veins popping out of their heads and was red in the face from yelling at each other.
I’m an optimistic and positive person. I choose to focus on the good and beautiful moments, but upon reflection, I think it’s disingenuous not to mention the failures. I’ve written many columns discussing the challenges we’ve faced with a rare disease and documenting our family’s hard work, but I never talk about the times when I hung my head in shame.
Rylae-Ann begins to pout and argue after being told it’s time to go home. (Photo by Richard E. Poulin III)
My reflection was prompted by a post in a special needs parent support group from a dad who was sharing his frustration, self-disappointment, and despair. I related to his post and started chatting with him. Our conversation made me realize it’s crucial to share that I and many other parents experience these emotions. It’s no easy task raising a child with high needs.
His child had a different condition than my daughter, who has aromatic l-amino acid decarboxylase (AADC) deficiency. But regardless of the diagnosis, parents of children with special needs have additional challenges to overcome on top of the typical parenting issues.
As a principal, there’s no way I would ever accept a teacher yelling at a child or being heavy-handed. However, I’ve been this way with my own daughter. Even though I understand her limitations, I’ve let my emotions cloud my judgment. It’s happened more times than I care to admit. Without admission and reflection, there’s no way to improve. So this column is my step to ensure I can continue providing the best care possible for Rylae-Ann.
Exercise and healthy habits
When my workday has been long and my patience is exhausted, I need to identify that. Taking a break to recharge or engage in exercise helps reduce my stress. The best way to stop arguments is not to let them happen in the first place. If I’m already stressed, then the likelihood of one happening increases.
Sleep is a luxury, but I still need to focus on ensuring I get all I can. Social media left our lives once our daughter began exhibiting symptoms of AADC deficiency. But an interesting video on YouTube can easily entice me to stay up later than I should. Without sleep, bad decision-making is sure to follow.
Removing myself from the situation
Playing with slime is one of Rylae-Ann’s favorite activities, which makes it a great way to defuse an argument. (Photo by Richard E. Poulin III)
If an argument happens, I must identify it, do my best to talk, and express my feelings calmly and respectfully. Failing that, I need to remove myself immediately. Thankfully, my wife, Judy, and I work well as a team. She’ll usually step in as soon as she sees my temper rise, and I do the same for her. We tag each other in without hesitation or bickering that it’s the other person’s turn. If she’s not around, then I need to put space between Rylae-Ann and myself.
Sometimes that’s as simple as going to another room. But other times, Rylae-Ann will follow me, shouting and wanting the argument to continue. In those cases, I change the activity so she has something fun to do independently. For example, bringing out some tempting colorful dough or slime works like a charm. Filling up the inflatable swimming pool has been another great option to redirect Rylae-Ann and to cool off.
Creating meaningful memories on the journey
Life is too short, and we have overcome too much to waste time on petty arguments. The problems we encounter are a luxury I’m more than willing to accept. I’m only human, but by reflecting, learning from failure, and following the steps above, I help my family create more meaningful memories on our journey.
I’ll continue to manage my emotions to maintain my relationship with my daughter. We’re all finding our way on our journey. To provide the best care possible, I must ensure I have the correct state of mind and remember that I’m her role model. Rylae-Ann depends on me to be the best I can be.
Note: AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of AADC News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.
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