The Mom and Her Autistic Daughter details the life and hardships you encountered when caring for an autistic adult daughter. Why was this an important book for you to write?
I wanted so much to help her because the child I remembered she was was very smart, very gifted in the arts (dance, music, painting), so sensitive to your feelings, so compassionate. The drugs had turned her into a disabled monster.
There is ample discussion given to the drugs that autistic people are often prescribed. What are some common misconceptions people have about this topic?
The drugs only serve to mask symptoms and give the false impression that they are solving the problem.
Do you plan to write more books on this topic?
Yes. I will continue this fight as long as I live. My next book may be titled: “After the Respite”.
Desiree has been given a status of emergency placement and Terry is her designated ICM. Attempts to place Desiree in a DDD licensed supervised apartment are tedious and difficult for she has e-bursts and night incontinence. Her issues are personal anger, and high anxiety. And perhaps because she was prescribed anti-depressant drugs, she can become violent. Unlike parents of mentally ill young people, Dubono pulled Desiree out of the shelter in an attempt to heal her, while awaiting the DDD placement.
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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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A true story about a mom who decides to help her autistic daughter live a normal life, took her out of shelter and into her own home. Parents of disabled children are passionate about their love for them and their love carries into adulhood. Soon, she discovered that her daughter, after over 30 years of psychiatric treatment, 17 of them in a group home, still displayed her original symptoms only exacerbated. She started reading Thomas Zachs and Peter Breggin, and learned about the design of psychiatric drugs as instruments to get rid of undesirable populations. When her daughter refused all the drugs however she caused her symptoms to rebound, and the mom now learned about how tragic it is to even start on a psychiatric drug. Only a very slow withdrwal under an MD supervision will avoid complete deterioration of brain and body, and avoic behavior problems such as outbursts and violence.
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