Guest Author - Bonnie Sayers
In a recent e-newsletter from the Autism Society of America Take Him Home and Love Him: A Story of Autism and How to Cope with It by Mary Ann Puckett was featured. It was the cover to this book that grabbed my attention. The title to the brief synopsis in the email noted, "Mother Writes Book About Raising Son on the Spectrum" and could have easily described dozens of books on the subject.
The book is available at www.autismreality.com, which is a website I was not familiar with so I headed over there to learn more about the book and ended up ordering it for $14.95 plus shipping and handling utilizing paypal. In one weeks time the book was at my mailbox and perused that same day. Just now as I visited the site it noted at the bottom page that I have visited the page three times. You will be greeted with music from the song "Paper Doll" at the site on the home page. The significance of this song is mentioned in Chapter One.
Take Him Home and Love Him: A Story of Autism and How to Cope with It consists of 168 pages covering twelve chapters, dedication, introduction, bibliography, index and a list of recommended reading. Among the list are a few books that I have read as well. Also at the back of the book are several blank pages for note taking.
I was able to read through the book in one afternoon between doing other things. Unlike other books by parents that tout a specific therapy or deal with their life before autism, Take Him Home and Love Him: A Story of Autism and How to Cope with It sticks to the topic at hand and goes through time in chronological order of her son Stephen's life. Written in 2004 when Stephen was 23 years of age and still living at home with Mary Ann and her husband.
Mary Ann does not mention her husband's name or his profession. Mary Ann was a teacher prior to having her two children. It was clear that Stephen had problems the first day he came home from the hospital. He screamed and started biting at a very young age. Mary Ann mentions many times that they never had a full night's sleep until Stephen was eight years of age. They had difficulty finding Doctors and she relied on the phone book to choose them.
Stephen had chronic ear problems, could not chew his food properly and suffered for years with Seizures before getting properly medicated for them. It was mentioned briefly that Stephen has OCD and Scoliosis as well, although the Obsessive-Compulsive Disorder was not discussed within the book.
When covering a subject that Stephen has gone through, Mary Ann explains to the reader what this word or phrase means in layman terms. This includes vitamin supplements, IEPs, advocacy and letter writing, In-Home Support Waiver, the battery of tests that Stephen endures over the years and medication side effects. I learned all about a bacterial antegen called Staphage Lysate, that is no longer used on humans. This was very beneficial to Stephen for two years.
Mary Ann stresses that had they received a diagnosis earlier in life Stephen could have benefitted from Early Intervention services. The same is true in regard to Sensory Integration as she recalls the issues Stephen had earlier in life, but they had no indication of what this was.
Stephen had problems with crawling and began walking and talking later than expected. He stopped talking at the age of two, becoming nonverbal until the age of eight. This is when they were introduced to Dr. Conrad, an allergist. Stephen has had sleeping and behavior issues since a baby. He was on Haldol before switching to Risperdal and other seizure medications along with his vitamin supplements.
At his Elementary school they called Mary Ann to pick up Stephen when he had behavior problems. They listed the same IEP goals for many years before Mary Ann started attending conferences and becoming part of an Autism Society Chapter and learned how to advocate for her son. When Stephen transitioned into high school letters were sent to the Governor, State Superintendent of Schools, Senators and the State Auditor. Her husband went to his office to discuss issues. It never dawned on me to contact the State Auditor.
Early on most of the professionals agreed that Stephen showed autistic traits, but since he recognized his Mother they all believed he could not be autistic. The Introduction lists the seventeen characteristics of autism that was previously published by the Autism Society of America.
Luckily they found a few good professionals along the way, including teachers and aides who had training and were able to work with Stephen and Mary Ann was no longer called to pick him up once he left the Elementary school level. "Living with autism is a study in how quickly behavior can get out of control."
They had to pay out of pocket for all the expenses since Insurance increased their rates to over eight hundred dollars per month due to what Doctors had written in Stephen's medical records. Stephen has had to wear a back brace over the years due to the side effect of his medication. Mary Ann shares what measures she had to take to deal with transitions when driving and how difficult it was to do this with Stephen as he would grab the wheel. She shared how one of his teachers tested the children by moving their desks each month. It took a few months for the students to overcome this monthly change.
The name of the book, Take Him Home and Love Him comes from what the Doctors told Mary Ann at the Child Study Center when they were reviewing the results of his tests including a CAT scan and EEG. At one point later on he was hospitalized with a ruptured appendix.
Mary Ann kept great notes over the years, which enabled her to write this book with such detailed information and reflection. Stephen has a fascination with vacuum cleaners, still has trouble using a fork and does not like a change in his routine. He works through a sheltered workshop where he worked part time with the school program. " The last 23 years have taken us in many different directions in the search in ways to help Stephen develop to his fullest potential."
During a period when Stephen would use profanities and even taught one to a nonverbal student before that child started talking, Mary Ann went on a field trip with his class. Stephen said one profanity when his teacher went with him on a walk away from the class. A few minutes later they came back and Stephen never used another profanity. Mary Ann asked the teacher how she was able to accomplish that. Turns out the teacher let Stephen say two profanities ten times in a row and then no more, so he got it out of his system.
The chapters in Take Him Home and Love Him: A Story of Autism and How to Cope with It are as follows:
I. Birth to six months, sleep disorder, DPT shots, delayed development, eating problems, proprioception, auto immune problems
II. Movement delays, tantrums, resistance to change, compulsions with vacuums
III. Hearing evaluation/results, modulation problems with the five senses, sibling relationship
IV. Treatment for nervous disorder, comprehensive evaluation age 3, speech therapy
V. School placement age 5, visual thinking, importance of one-on-one assistance, early interfvention, school policy, intervention programs
VI. Age six, amino acid testing, list of vitamin and mineral supplements, development of speech, allergy testing
VII. help with sleep disorder, hyperlexia (reading without comprehension), attempted mainstreaming, development of seizures
VIII. Appropriate placement in elementary autism class, behavior modification training, local autism chapter, grieving process of parents
IX. Middle School difficulties and resolution, legislation information on handicapped children, what is required of schools, management of seizures, behavior issues addressed with psychiatric medications, medication side effects
X. Transition to High School, Letters/Meetings to advocate for an appropriate autism class, intervention help from the Office of Civil Rights
XI. Waivered Services Program, Purpose of the Waivers, how to begin receiving waivered services
XII. Focus on the positive aspects of autism, autism in legends and fairy tales, refrigerator mother theory, need for more information and training on autism, legal guardianship, daily nutritional supplements, developmental improvements
The style of writing was very natural and easy to comprehend. I did not have to go back and forth to figure out how old is for each chapter. The examples really conveyed the point, especially when Mary Ann shared how she explained what life would be like after Stephen graduated high school to a Senator and was able to get the waivered services. This meant Mary Ann did not have to quit her job or place Stephen in an institution.
By perusing Take Him Home and Love Him: A Story of Autism and How to Cope with It parents and professionals will gain insights into the struggles of daily life through the years. The trials and tribulations of medication changes, routines and school transitions plus trying to find a Doctor to make an accurate diagnosis and get help for seizures.
This is a book to give to the relatives and let them know what living with autism is really like. It is an eye opener to show what type of research parents need to do to find help and resources for their children, plus the obstacles they come across and endure in this process of living with autism.
Autism Reality - purchase Take Him Home and Love Him: A Story of Autism and How to Cope with It
Educational Autism Tips for Families 71 page resourceful ebook for families entering the school system with a recent autism diagnosis. Find out what issues take place over the course of a school day and meet these challenges head on.