I Wish I Could Read My Daughter’s Mind

Most parents experience a time when they wish they could read their child’s mind. For example, when children are infants and can’t speak yet, wouldn’t it be great to know what they are thinking? Parents of special needs children may experience this feeling, either sometimes or most of the time, depending on the severity of their child’s disability.

Caregivers and loved ones who have family members with dementia, Alzheimer’s, or aphasia due to a traumatic brain injury may also wish they could read their loved ones’ minds. These diseases rob people of their ability to speak when oftentimes they could verbally communicate prior to the condition’s onset.

My daughter Abby used to sing and speak in complete sentences when she was younger. She was diagnosed with Sanfilippo syndrome at age 22 in 2017. She is now 25 and has maybe five to 10 real words left in her vocabulary. Sanfilippo syndrome is sometimes referred to as childhood Alzheimer’s because of its similarities to Alzheimer’s disease.

Being unable to truly know what she wants or needs is an obstacle. Luckily, she is generally happy and does not appear to have pain for now. I know this won’t always be her normal, and that is what scares me most. Seeing her in pain rips me apart. It is the most helpless feeling to watch someone you love experience discomfort or pain and not know what to do or how to help.

Currently, Abby typically resides in one of two general “modes”: calm and quiet, or happy and talkative. She can be cranky, too, but thankfully, this happens less often.

Her calm and quiet mode is just as it sounds — she is mostly still and hardly makes any sounds. When she’s happy and talkative, Abby mostly communicates via facial expressions and sounds. She laughs and produces silly vocalizations when she is happy or amused.

Fortunately, for now, she seems happy or at least content most of the time. But as Sanfilippo takes its toll, this will not always be the case, and I fear what is in store for her.

How will I know when she is hurting or uncomfortable? If her facial expression indicates that she is in pain, what if I am unable to determine what hurts? It is the most helpless feeling that a parent can experience, and it is a fear I live with daily. If only I could read her mind and know how to help her.

Being able to understand Abby’s thoughts at any time would be incredibly insightful. For instance, is she aware that she can’t do things she used to do? Does she understand why she is at home most of the time and why she has a caregiver with her each day? Does she have any understanding of what goes on around her? I wonder about things like this all the time.

I miss so much about “pre-Sanfilippo” Abby — her independence, her personality, her interests in different things. However, I am so thankful that she still appears content, and has so many people surrounding her with love. I hope she is at least aware of how much she is loved. I have to believe she can feel that.

***

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.