The Mom and Her Autistic Daughter by Regine Dubono is a fitting title for this book. Dubono explains the life and turmoil of Desiree, an adult with autism, and her mother. Desiree’s medicines’ effects and side effects are explored. The struggle to find Desiree a long term living arrangement becomes a source of contention between Desiree, Desiree’s mother, and her caregivers. Her mother finds it difficult to find balance for herself and her daughter while playing a deck that seems stacked against them.
The author delves into Desiree’s everyday life which feels tumultuous at best. Desiree has parts of her life she enjoys such as shopping and manicures, but everything apart from that feels tense. In working in Special Education I have found in the past that this is pretty typical of autistic children. I assume that would generally carry over into adulthood as it has with Desiree. My students have had areas they excel in and become almost obsessive about their particular interests. Anything else feels boring or daunting. Any deviation from their schedule can also cause a tailspin or meltdown. These are things that readers who have not worked with people with autism may not know and may learn from the book.
I’ve also had a bit of experience in dealing with drugs and their side effects while caring for my father. Dubono explores how drugs may “fix” one issue, but cause many more. One drug may also cause further symptoms that need to be controlled, thus producing the need for more drugs. These are frustrating waters to navigate. Readers may get more of a grasp of how many pharmaceutical companies and drug-pushing doctors work in this aspect. This part of the book is especially pertinent in today’s social climate.
Dubono’s explanation of the struggles in finding Desiree a permanent and sufficient placement especially hit home for me. Many readers who have dealt with this kind of thing will be able to sympathize with the accounts she gives. It is extremely hard to find caregivers for adults. It would be exponentially harder to find care for those who are prone to have outbursts and labelled as “difficult.” Clean and suitable facilities and genuinely caring and qualified caregivers aren’t always readily available. My family knows that from experience. Anyone who has dealt with this will find her accounts relatable.
The structure of the book feels somewhat lacking and feels repetitive at times. One letter in particular that is written by the mother is repeated almost verbatim in another part of the book. I had to flip back to make sure I hadn’t lost my place. There are quite a few grammatical and spelling errors throughout the book. There are also many abbreviations that are left unexplained. There is substance in the experiences and relationship of the mother and daughter, but the book doesn’t flow as well as I would have liked it to. I think the book would benefit greatly from an editor and proofreader.
There are important lessons to be learned here. This is a story that should be told as a cautionary tale and to help parents or guardians not feel alone in this situation. Desiree’s voice should be heard, I just think the book could use some revision and restructuring.
Pages: 123 | ASIN: B07H5RCYB5
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