Balancing logic and emotion isn’t easy as a Sanfilippo parent

Parenting children is challenging. Parenting children with special needs or developmental delays is even harder. You must consider many factors: age, ability, environmental and situational dynamics, setting, time of day, and more.

My oldest daughter, Abby, was immediately admitted to the neonatal intensive care unit after she was born and has faced challenges ever since. She was diagnosed with autism at age 5, but her Sanfilippo syndrome wasn’t discovered until she was 22. She’s now 29, so we’ve been living with this diagnosis for about seven years.

Throughout Abby’s life, I’ve always sought balance when making decisions — weighing the risks and rewards, the pros and cons. It helps me make more rational, thoughtful decisions, even in highly charged situations. But it’s not always simple because my emotions often intervene.

I feel like a car heading toward a destination, but different drivers are trying to get me there. If my emotions drive, the route is much longer. I waver and struggle to make decisions. But when logic drives, my route is much more efficient. I weigh the good and the bad and make a choice. Sounds easy, right?

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Take Abby with me or leave her at home?

Currently, I am struggling to decide when to take Abby with me to places and when to leave her at home with a caregiver. On the surface, it seems so obvious that I’d want to bring Abby along whenever possible so she can get out and enjoy herself. But there are many factors to consider: her bathroom schedule, bathroom accommodations (she uses a wheelchair), how she and I feel physically, the number of people present, how long we’ll be gone, noise volume, the temperature (her body no longer sweats), and more. It’s complicated!

As the disease has progressed in Abby, she has become less aware of others and her surroundings. She has much less of a connection to people and places. I’ve also seen her become anxious during outings. Her noises became louder, she had an unsettled look on her face, and she appeared slightly agitated. This made me uneasy, too, and caused me to rethink automatically taking her with us when we go somewhere.

Balancing my wants and Abby’s needs

If I consider Abby’s feelings and try to guess her wishes, I think she prefers the comfort and familiarity of home. If I were in her shoes, I’d probably feel the same way. But as her mom, I fear she might feel neglected or unwanted, and that is furthest thing from the truth. I think it’s just my emotions trying to drive again, but the thought still creeps in at times and is hard to shut down.

I want to include Abby as much as possible, but it’s just not always practical or what’s best for her. I must balance my wants and her needs, which means logic needs to drive most of the time. Emotions can take a lap here and there, but they can really get in the way.

I know Abby realizes she is loved and treasured by us. We tell her many times a day and show her by taking care of her needs. We must take care of ourselves, too, though, so we can handle her needs as they arise. And an occasional dinner or movie out with just my husband provides us the respite we need.

Again, it’s all about balance.

Note: Sanfilippo News is strictly a news and information website about the syndrome. 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 Sanfilippo News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.