A Spot on the Wall by Martha Squaresky, eBook 2014; an Extended Review with < My Thoughts > by Sara Luker
Excerpts from the book – (8% indicates location in the Kindle version of the book, instead of page numbers).
8% It remained for us to explore the system and find appropriate ways to help Greg. I now had to count on others.
< My Thoughts > “It remained for us to explore the system…”
Again my point about how, even today, parents are left to learn about autism on their own.
8% Jay and I strolled out of the Regal Cinema… We waited on the carpet in the long corridor for our friends…Jay turned, glanced to his left and saw Greg. Our son.
Jay said “Martha. Look! There’s Greg.” Jay tugged on my sleeve.
I heard him, turned to look at my son and said, “Greg! Hi, Greg! Are you going to the movies? We saw a movie with Charlene and David.”
A bit confused to see Jay and me at the theater, he peered into my eyes, and then looked away as if mentally processing our presence in his life…
Evidently his private world no longer included us. He moved forward, ignoring me.
< My Thoughts > “…his private world no longer included us.”
Krauss, et al. (2005) tell us that, “… the perceived impacts … of co-residence vs. out-of-family living,” are often unknown or unreported. But, what is known is that “these residential decisions are consequential for all members of the family – including the son or daughter”…with autism.
“Decision-making about where a child with an Intellectual Disability, such as those with autism, will live as an adult is perhaps one of the most difficult issues families confront.” “…U.S. mandated school services end at age 22, under the Individuals with Disabilities Education Act (IDEA). According to reports from social services, this is a particularly difficult period for families…”
Krauss lists six major concerns for parents of adult-children with ASD living at home.
They are –
Aspects of non-family residence –
The authors admit that unfortunately, only through ‘living the experience’ can one know how everyone will adjust and how they will discover who will benefit and who will not.
4% “Go away. This is my life now,” I’m sure he would have said had he been able to communicate his thoughts.
I convinced Jay they would call if there was a problem.
3% You encourage your children to live independently in this chaotic world. That’s what all parents seek for their children. This story is about that seeking…
Jay and I are new to the freedoms of the empty nest. Our son and personal dictator recently moved out from the home where we’d sheltered him, loved him, cared for him, made him our life purpose for twenty-five years. Hard years.
We wanted him.
4% We will never return from this trip. It is lifelong.
No child was wanted as much as Greg. Except my first born, Adam.
We doted on him. And now he ignored us.
< My Thoughts > “…he ignored us.”
With foster children we have had, there have been similar experiences when the children were eventually placed in a group home.
One boy, upon seeing us unexpectedly, at the mall, was convinced that we had come there looking for him. That was very difficult for everyone involved, but he called us when he got back to the group home, as instructed… and queried, “Why did you want me to call?” The incident was already forgotten.
Another boy we had for over three years, after seeing us in a local store, saw us and looked horrified that we might try to come up and talk to him while he was with his ‘groupies’… we just smiled and walked on. His caregivers did say that he asked about us later. They offered a phone call, but he was satisfied to know that we were still around. No phone call necessary!
5% Greg became obsessed with Sesame Street. When he was one-year old, he did thirty-piece puzzles. The new baby next door couldn’t do anything except eat, cry and play with a rattle, but not Greg. Clearly, he was brilliant.
< My Thoughts > “Clearly, he was brilliant.”
The New York Times reports, in a July 2012 article by Maia Szalavitz, that “young prodigies scored high in autistic traits,” due most notably in their ferocious attention to detail. They scored even higher on this trait than did people diagnosed with Asperger’s syndrome, a high-functioning form of autism that typically includes obsession with details.
Three of the eight prodigies were diagnosed autism spectrum disorder. The child who had spoken his first words at 3 months, stopped speaking altogether at 18 months, then started again when he was just over two-and-a-half years old; he was diagnosed with autism at 3. What’s more, four of the eight families included in the study reported autism diagnoses in first-degree or second-degree relatives. Three of these families reported a total of 11 close relatives with autism. In the general population, by contrast, about 1 in 88 people have either autism or Asperger’s.”
According to the Center for Disease Control, the current number of children with autism is now 1 in 68 children.
5% He had some quirky behaviors that we explained away easily. His repetitive play confused us as much as it entertained us. After all, how many children stayed at a task for hours?
I faithfully recorded each new word in his baby book and according to our pediatrician, the same doctor that Jay had as a child, Greg was developing normally. I don’t know how Dr. Karp ever came to that conclusion since Greg screamed through every appointment.
< My Thoughts > “…screamed through every appointment.”
Major, et al. (2013), brought light to the fact that “…there has been little focus on improving ASD education during pediatric residency.” This study was to evaluate the curriculum that was out there regarding autism. They found a promising one teaching future doctors these 7 case-based modules –
In the conclusion, the authors stated that most pediatric residents felt training was important to their careers, but that “the current program was inadequate” and furthermore, “rated their competence regarding ASD as poor.”
6% Greg looked so normal when he was little.
People started to stare the older he got. It wasn’t so cute anymore to see Greg have a conniption in a store.
< My Thoughts > “…looked so normal…”
In reading the literature and in comments I have heard in general, people often say… “S/he is so cute and looks so normal… no one would ever guess there was anything wrong.” Of course… those in the community are often convinced that they are seeing a ‘spoiled brat’, when that cutie can’t get what they want in the store… and a meltdown occurs. The meltdown may in reality be from the overstimulation of the sounds, lights, and smells of that store. One store, where I am forced to shop because of competitive pricing, actually sets me off. My eyes burn and my throat closes up… I’m convinced it’s probably the bug spray they use at night… when no one is around. I know that I can never take Sonny in there! Ugh!
6% Age: two. When Greg’s speech regressed, we worried about his hearing. He still sang entire songs and recited the alphabet with Bert and Ernie yet he had no conversational ability whatsoever.
7% Greg did not tolerate certain smells causing him to shriek until dinner was over. Family mealtimes were often ruined.
Greg despised the smell of chicken, pasta, or fish in the kitchen. He gave new meaning to the need for sameness. Greg ate Boston Style pizza from a pizzeria… almost every day.
I left Jay and Adam to dine alone while I took Greg out for a car ride, just to stop the agony.
We only thought of survival, unaware that we were teaching Greg he could avoid what he didn’t like by screaming.
< My Thoughts > “ certain smells causing him to shriek…”
Wiggins, et al. (2009) found that although usually tactile sensitivity and auditory filtering were reported the most by parents of children with autism, they found that the next highly reported problem was with abnormal responses to tastes or smells. In this sensory domain, children with ASD allowed only limited textures or temperatures in food. They avoided certain tastes, and they were described by parents as ‘picky eaters’ and displayed an aversion to tastes and smells.
Remember too, that in addition to what is described as ‘aversions’ are often met with shrieking or screaming, because the child’s sensitivity is way beyond the intensity that you or I experience. Hearing can be very acute when one is dealing with sensory issues.
7% With Greg around, we regularly formed new understandings about life.
We couldn’t see autism. Greg was an adorable little boy in appearance.
7% Undoubtedly, we had a child prodigy; we just didn’t know in what other areas he excelled.
8% Sheila is my friend who had the courage to tell me that she was worried. At the playground on day, she plopped her daughter into the swing next to Greg and said “Martha, I have to talk to you.”
…”Oh, no. What?” I asked her.
“It’s Greg. I’m worried about Greg. I think there is something wrong.”
She was the first person who had the guts to say it. What courage that must have taken.
How does one mother tell another there is a problem with her child? I cringed inside, looked at Greg, looked at the other children and knew in my heart she was right.
I will never know what it took for Sheila to venture into the unknown with me, but Sheila’s bravery that day earned my enduring respect.
Age three. Greg now spoke in dribs and drabs. We knew he could form words. Why didn’t he use them?
There was clearly a connection missing between Greg’s brain and his ears and mouth. Adam, Jay and I tried to talk to him, but he looked silently through us.
< My Thoughts > "There was clearly a connection missing... "
Bradshaw, et al. (2015), “The first 2 years of infant development are marked by rapid change and an explosion of cognitive, language, and social abilities.” “The second year of life is characterized by an exponential growth of verbal communication”…and “by the time children with ASD are identified and enrolled in treatment programs… the gap between their abilities and those of typically developing peers has often grown quite wide.”
8% After Sheila voiced her concern about Greg’s development; I called a pediatric neurologist and scheduled an appointment. While we were at his office for an examination… he insisted he did not want to share his diagnosis… but he knew.
< My Thoughts > "...he did not want to share his diagnosis… but he knew."
According to Oosterling, et al. (2010), “Screening in primary care is a sensitive issue because false positive results may cause parents unnecessary anxiety or may result in a cascade of avoidable further assessments, while false negative results may falsely reassure parents and delay an early start of interventions.”
8% He predicted and confirmed the diagnosis of PDD (Pervasive Developmental Delay), sharing his opinion that we had lifelong problems, therapies and anguish ahead. Greg was only three years old.
When Greg and I arrived home, Jay was waiting on the porch, and I gave him the short version. “We have a lifelong problem.” Jay’s piercing eyes turned watery. He understood.
The doctor made us wait for a letter in which he provided all kinds of information about Greg’s autism.
But, it remained for us to explore the system and find appropriate ways to help Greg. I now had to count on others.
< My Thoughts > “It remained for us to explore the system…”
Again my point about how, even today, parents are left to find out about autism on their own.
9% So, Greg was autistic? Why had no one said it before? They’d masked it as PDD. A sickening feeling spread through me as I finally understood.
10% Age four. Greg sat next to me at the kitchen table. I took out a marker and tried to draw Cookie Monster. Unable to communicate with my son verbally, I decided to try to connect with him through art. Greg showed that he was able to learn, but his learning was mainly visual.
I drew Cookie Monster for a month or so, and being unable to draw anything more complex, I didn’t try other characters.
< My Thoughts > “…I decided to try to connect with him through art.”
When Sonny was a 9-year-old, we persuaded the school district to try him in a more advanced school for their summer program (ESY) Extended School Year. I also had a position with that school, teaching an older group of children with disabilities. Because Sonny was non-verbal, non-diagnosed autistic, the principal had her doubts, but as it turned out… Sonny was recommended to attend that school in the Fall. Yea Team!!!! But, my point is that in this more ‘normal’ classroom he not only blossomed, but he made some unexpected friends.
There was a bulletin board by the door, as you entered the classroom. Sonny always stopped to greet the characters posted there. Much as one would genuflect when entering a church. The teacher remarked to me that Sonny didn’t seem to recognize her or the aide, but always stopped excitedly to coo and mumble to the gang on the wall. At first I didn’t have a clue, and then we realized that he had books at home filled with those characters… Elmo, Cookie Monster, and Big Bird. Now we had a way to connect with him… and we were able to get that much closer to understanding how he connected to the world around him.
10% Greg watched, said, “Go Dabba” and “more.” Speech appeared only in bits. After producing each new sketch with his scented markers, Greg smelled the Cookie Monsters.
At the beginning of the second month of drawing solo, I asked Greg if he wanted to draw. He picked up the marker and drew an animated Go Dabba. His drawing was full of personality, and his use of lines and expressions was more creative than anything I ever drew.
Greg told Jay to write “Dear Cookie Monster’ next to Go Dabba. We never discovered why Greg said these words. Perhaps he wanted Cookie to come for a visit? We had no clue why Greg placed Cookie’s boots next to him (in the picture).
At age five, he had advanced beyond me! He seemed to have taken the picture of a character from his mind and reproduced it on paper.
58% Greg ballooned to two hundred fifteen pounds by high school. I had to put away my biking shorts and hat, but the stronger Jay rode Greg around the town, the beach, along the river and various bike paths.
We needed to find a niche for Greg in high school by taking a careful look at his educational opportunities. …Special education classes or life skills… The words, “public education” have a collective connotation. Individualized instruction was not in the job description. To go through due process for Greg took years. We didn’t have years.
I met my match at the first teacher/parent conferences when the special education math teacher approached me, shook my hand and said, “Greg should not be here. He should be in life skills.” …She was resolute.
< My Thoughts > “Greg should not be here."
Reed & Osborne (2013) found in their study, that there were discrepancies between parent and teacher ratings of behavior of children with ASD. Information about a child’s abilities are discovered through the completion of a questionnaire given to parents, teachers, and caretakers. They are asked to complete these questionnaires and then the information is compared. In the ones they used, they found that there was evidence, but not widespread, that the stress level of parents in their sampling was a factor in how their child’s behavior was rated by them. Another factor, yet to be explored, were the personality characteristics of the teacher / caregiver involved with the child.
As Sonny’s parent, this tells me that even though I perform honestly on an inquiry to rate his behavior, my concerns for his future will come through in my answers. I might describe him as, and make him look ‘more’ needy, because I worry that they will expect him to function independently.
As a teacher of someone like Sonny, I may feel that some of the behavioral challenges he faces can be overcome, with the right programming (which I can provide). Or, depending on my classroom experiences, I may not be so optimistic and may want to spare the parent what I feel are false hopes about his/her abilities.
There is also another component… the school principal. The principal has a staff and a budget by which to hire that staff. If Sonny… or, Greg requires a one-on-one aide to be with him in certain settings… like inclusion, then that becomes a factor. I have seen aides who were no longer needed, because their student had moved on, lose their position. But, if that aide is in a school where a new student needs an aide with that specific kind of training, then problem solved. Or, if the principal has to ‘find’ funds to hire someone as a one-on-one for that child… then you see the hidden dilemma.
59% I wanted inclusion. Was there anybody who would listen and continue to educate Greg in a regular education class?
The music teacher listened. The art teacher listened. Greg’s remaining inclusive classes were non-academic courses. Not core (Reading, Writing, & Math).
Producing works of art independently was out of Greg’s reach. Greg demanded assistance on every task. He produced beautiful pots, clay faces of all his favorite Sesame Street characters, and paintings.
With help, Cindy encouraged Greg’s talents, never admitting defeat. She focused on the whole child, working on his socialization and behavior.
I had to change my expectations. Too many obstacles. I fought for my son until the fighting was done. Although I prayed for a miracle cure, it was not going to happen. This was not a common cold. Greg had autism. We moved him to a life skills class.
< My Thoughts > “We moved him to a life skills class.”
Actually, in the school systems where I have taught, the life skills class is where they implement the use of communication devices, introduce social skills, and show videos of behavior to model to. So, I see moving Greg to life skills class as a good thing. But again, it depends on the resources and programs available… and so on. My advice would be to show up frequently to see what’s going on. Teachers can always arrange for you to ‘hide’ behind a screen or partition, so as not to disrupt the process. And of course, you don’t want your child to be ‘warehoused’ there and not have other opportunities for academics.
If all you can get your principal to agree to is to ‘allow’ your child to attend Art, Music, and PE, then that’s a step. The atmosphere in those classes is usually more relaxed… and, requires use of different parts of the brain. So, even though it is not a core curriculum the child is offered, it is still a form of inclusion with ‘neuro-typical’ peers. You have to pick your battles. Smiles.
Lai, et al. (2012), “Despite language disabilities in autism, music abilities are frequently preserved. Paradoxically, brain regions associated with these functions typically overlap…” making it possible for learning musical pieces. Especially songs.
64% Communication continued to be Greg’s biggest problem. His inability to ask for a simple glass of water and other essentials made meeting needs impossible.
The high school sign language teacher decided to try signing. Since Greg’s brain did not process expressive language with spontaneity, maybe sign language provided an alternative.
Once a week, she came to life skills class to teach sign to the entire group of special needs students. Greg formed letters and paid attention, yet did not employ the new language.
One needed to make choices in order to sign. Greg hated choices.
65% I really have experienced that dark side of the universe.
85% Greg’s fingers showed evidence of his own personal attacks. For years during tantrums, he bit his fingers. Calluses built up to the point that when we held his hand, we felt the hard spots on each side of his index fingers.
To better understand why Greg exhibited this self-injurious behavior, I compared it to cutting. Cutters seek a release from the emotional pain that they are experiencing, and may cut on impulse.
Greg felt better when he bit his fingers. Maybe there was a release of endorphins that brought relief from whatever was causing Greg’s tantrums, thus making it a compulsive behavior. In many ways his puking mirrored cutting.
My hope was that Greg understood the pain inflicted on him by a fellow sufferer of autism as nothing personal. I wanted him to find peace from his personal demons as well.
< My Thoughts > “Greg felt better when he bit his fingers.”
Boesch (2015), “… an individual may not exhibit impairment in current functioning until environmental demands outweigh the individual’s capabilities.” One of those impairments causing self-injurious behavior is communication and/or language deficits. “SIB’s are behaviors causing direct physical harm to one’s own body, resulting in physical injury and tissue damage,” (exhibited through self-hitting, self-pinching, self-biting). Occasionally they will bite others nearby.
Boesch continues, “SIB’s result in numerous negative consequences for individuals with ASD, as well as”…others. These individuals “are often stigmatized and experience peer rejection, sibling disharmony, and rejection by teachers.” Yes, their ‘teachers’. This is especially difficult for teachers who have this student in an ‘inclusion’ setting with ‘typical’ peers. “The impact interferes with student instructional opportunities, thus significantly impacting their educational achievement and future occupational success.”
Boesch goes on to say that, “Remediation in functional communication is often recommended as an appropriate starting point…” In this particular case study the student, Mike, learned through a rigorous program, to give up his spontaneous ‘manual signing’ method of communication and switch to using a speech-generating device, appropriate for his level of function and age.
11% Greg needed the special education component, but he also needed to receive services that were Greg-specific.
85% True to their promises, Milestone Achievement Center never called to report a puking incident. Melanie conducted music therapy in their music room, calming Greg, guiding him through his stressful times. Alice worked on Greg’s speech.
Greg’s conduct improved enough for him to secure employment. He survived a few punches. After graduation he had a job. We felt accomplished.
86% The week after Greg’s high school graduation, I put Greg into the community bus especially created to take people with special needs to work. Once again, I trusted the “system” to deliver results.
At 3:30 pm that day, Greg’s aide, James, arrived at our house to take care of Greg until I returned home.
At 4:00 pm, I left work to visit my brother and run errands with him. James (the fellow who stayed with Greg after school) called my cell phone at 4:30 pm. “I don’t want to worry you, but I’ve been waiting for an hour and Greg isn’t home from work yet.”
I looked up the number of the bus company in my little phone book and called from my car. I called Greg’s supports’ coordinator who agreed that this was unusual. She offered to continue to try to reach the company for information.
87% I called James from the highway as I sped home… A panic attack was on the horizon as I envisioned the possibility that Greg was suffering, and I could not help him. At 5 pm, Greg was still not home. James called to say that he hadn’t seen the bus. Greg was now an hour and a half late from work.
Jay refused to carry a cell phone, but I knew he, too, was on his way home from work.
87% James called at 5:15 pm to tell me that Greg’s bus had just arrived. (I rushed home…). Greg bounced out of the bus, dashed into the house to go to the bathroom and I heard the driver tell James…
“I was completely lost. I dropped off my next-to-last passenger. Greg was the last. I drove around and around, but couldn’t find Regent Drive.”
…”So I turned to Greg and said, ‘Greg, we’re lost.’” “I knew Greg couldn’t talk and had special needs and was probably going to start freaking out…”
“All of a sudden, I saw a finger point left, and Greg said, ‘This way.’ I turned left. Then Greg pointed again and said, ‘This way.’ He did that until we turned the corner. I guess Greg figured that if he didn’t get involved, he was never going to get home. He’s the man!”
99% Greg is heroic. He is living life independently despite having severe challenges in communication, meeting simple demands and making meaning out of life. That’s what I have to accept, and it’s the most difficult acceptance there is.
Greg doesn’t need me anymore.
< My Thoughts > "Greg doesn’t need me anymore."
Ah, but that is not the end of the story... saga to be continued in Martha Squaresky's next book!
==============
References used in < My Thoughts > are:
Boesch, M., Taber-Doughty, T., Wendt, O., Smalts, S. (2015). Using a Behavioral Approach to Decrease Self- Behavior in an Adolescent with Severe Autism: A Data-Based Case Study; Education & Treatment of Children, Vol. 38:2, p305-328.
Bradshaw, J., Steiner, A., Gengoux, G., Koegel, L. (2015). Feasibility & Effectiveness of Very Early Intervention for Infants At-Risk for Autism Spectrum Disorder: A Systematic Review; Journal of Autism & Developmental Disorders: Vol. 45: 3, p778-794.
Gonzalez, et al. (2015). Developmental Surveillance & Referral in a Traditionally Medically Underserved Border Community. Journal of Maternal Child Health. V19:p.2323-2328.
Krauss, M., Seltzer, M., Jacobson, H. (2005). Adults with autism living at home or in non-family settings: positive and negative aspects of residential status. Journal of Intellectual Disability Research; Vol. 49; p 111-124.
Lai, G., Pantazatos, S., Schneider, H., Hirsch, J. (2012 ). Neural Systems for Speech & Song in Autism. Journal of Neurology; Vol. 135:3, p. 961-975.
Major, N., Peacock, G., Ruben, W., Thomas, J., Weitzman, C. (2013). Autism Training in Pediatric Residency: Evaluation of a Case-Based Curriculum. Journal of Autism & Developmental Disorders; 43:1171-1177.
Oosterling, I., Wensing, M., Swinkels, S., Van der Gaag, R., Visser, J., Woudenber, T., Minderaa, R., Steenhuis, M., Buitelaar, J. (2010). Advancing early detection of autism spectrum disorder by applying an integrated two-stage screening approach; Child Psychology & Psychiatry, Vol. 51:3, p250-258.
Reed, P. & Osborne, L. (2012). The Role of Parenting Stress in Discrepancies Between Parent and Teacher Ratings of Behavior Problems in Young children with Autism Spectrum Disorder (ASD). Journal of Autism Developmental Disorders, 43:471-477
Wiggins, L., Robins, D., Bakeman, R., Adamson, L. (2009). Brief Report: Sensory Abnormalities as Distinguishing Symptoms of Autism Spectrum Disorders in Young Children; Journal of Developmental Disorders, Vol. 39:7, p187-191.
==========
Excerpts from the book – (8% indicates location in the Kindle version of the book, instead of page numbers).
8% It remained for us to explore the system and find appropriate ways to help Greg. I now had to count on others.
< My Thoughts > “It remained for us to explore the system…”
Again my point about how, even today, parents are left to learn about autism on their own.
8% Jay and I strolled out of the Regal Cinema… We waited on the carpet in the long corridor for our friends…Jay turned, glanced to his left and saw Greg. Our son.
Jay said “Martha. Look! There’s Greg.” Jay tugged on my sleeve.
I heard him, turned to look at my son and said, “Greg! Hi, Greg! Are you going to the movies? We saw a movie with Charlene and David.”
A bit confused to see Jay and me at the theater, he peered into my eyes, and then looked away as if mentally processing our presence in his life…
Evidently his private world no longer included us. He moved forward, ignoring me.
< My Thoughts > “…his private world no longer included us.”
Krauss, et al. (2005) tell us that, “… the perceived impacts … of co-residence vs. out-of-family living,” are often unknown or unreported. But, what is known is that “these residential decisions are consequential for all members of the family – including the son or daughter”…with autism.
“Decision-making about where a child with an Intellectual Disability, such as those with autism, will live as an adult is perhaps one of the most difficult issues families confront.” “…U.S. mandated school services end at age 22, under the Individuals with Disabilities Education Act (IDEA). According to reports from social services, this is a particularly difficult period for families…”
Krauss lists six major concerns for parents of adult-children with ASD living at home.
They are –
- Behavioral concerns (obsessions, aggression, tantrums engaged in by an adult-child)
- Social & communicative concerns (inappropriate or inadequate social skills, where isolation becomes a risk)
- Family related concerns (continued restriction of family life, need for person’s constant supervision)
- Education & related services (finding programs to further educate them, similar to those previously provided by the school system)
- Relationships with professionals (finding & funding similar private programs, similar to those previously provided by the school system)
- Independence (concerns about finding vocational training & placement, plus leisure time services, similar to those previously provided by the school system)
Aspects of non-family residence –
- Family benefits from a visitation plan (calmer life for parents & siblings)
- Adult-child benefits from learning new skills, becoming more independent.
- Family benefits from having less fatigue, for more free time, able to resume careers.
- Adult-child may have safety, grooming, & concerns & feel less connection with family.
- Parent may experience worry, guilt, loss of control & contact with adult-child, may miss caregiving.
The authors admit that unfortunately, only through ‘living the experience’ can one know how everyone will adjust and how they will discover who will benefit and who will not.
4% “Go away. This is my life now,” I’m sure he would have said had he been able to communicate his thoughts.
I convinced Jay they would call if there was a problem.
3% You encourage your children to live independently in this chaotic world. That’s what all parents seek for their children. This story is about that seeking…
Jay and I are new to the freedoms of the empty nest. Our son and personal dictator recently moved out from the home where we’d sheltered him, loved him, cared for him, made him our life purpose for twenty-five years. Hard years.
We wanted him.
4% We will never return from this trip. It is lifelong.
No child was wanted as much as Greg. Except my first born, Adam.
We doted on him. And now he ignored us.
< My Thoughts > “…he ignored us.”
With foster children we have had, there have been similar experiences when the children were eventually placed in a group home.
One boy, upon seeing us unexpectedly, at the mall, was convinced that we had come there looking for him. That was very difficult for everyone involved, but he called us when he got back to the group home, as instructed… and queried, “Why did you want me to call?” The incident was already forgotten.
Another boy we had for over three years, after seeing us in a local store, saw us and looked horrified that we might try to come up and talk to him while he was with his ‘groupies’… we just smiled and walked on. His caregivers did say that he asked about us later. They offered a phone call, but he was satisfied to know that we were still around. No phone call necessary!
5% Greg became obsessed with Sesame Street. When he was one-year old, he did thirty-piece puzzles. The new baby next door couldn’t do anything except eat, cry and play with a rattle, but not Greg. Clearly, he was brilliant.
< My Thoughts > “Clearly, he was brilliant.”
The New York Times reports, in a July 2012 article by Maia Szalavitz, that “young prodigies scored high in autistic traits,” due most notably in their ferocious attention to detail. They scored even higher on this trait than did people diagnosed with Asperger’s syndrome, a high-functioning form of autism that typically includes obsession with details.
Three of the eight prodigies were diagnosed autism spectrum disorder. The child who had spoken his first words at 3 months, stopped speaking altogether at 18 months, then started again when he was just over two-and-a-half years old; he was diagnosed with autism at 3. What’s more, four of the eight families included in the study reported autism diagnoses in first-degree or second-degree relatives. Three of these families reported a total of 11 close relatives with autism. In the general population, by contrast, about 1 in 88 people have either autism or Asperger’s.”
According to the Center for Disease Control, the current number of children with autism is now 1 in 68 children.
5% He had some quirky behaviors that we explained away easily. His repetitive play confused us as much as it entertained us. After all, how many children stayed at a task for hours?
I faithfully recorded each new word in his baby book and according to our pediatrician, the same doctor that Jay had as a child, Greg was developing normally. I don’t know how Dr. Karp ever came to that conclusion since Greg screamed through every appointment.
< My Thoughts > “…screamed through every appointment.”
Major, et al. (2013), brought light to the fact that “…there has been little focus on improving ASD education during pediatric residency.” This study was to evaluate the curriculum that was out there regarding autism. They found a promising one teaching future doctors these 7 case-based modules –
- Early warning signs of Autism
- Screening for Autism
- Communicating concerns: Screen & diagnosis results
- Making an Autism diagnosis
- Early intervention & education
- Treatments for Autism
- Autism-specific anticipatory guidance
In the conclusion, the authors stated that most pediatric residents felt training was important to their careers, but that “the current program was inadequate” and furthermore, “rated their competence regarding ASD as poor.”
6% Greg looked so normal when he was little.
People started to stare the older he got. It wasn’t so cute anymore to see Greg have a conniption in a store.
< My Thoughts > “…looked so normal…”
In reading the literature and in comments I have heard in general, people often say… “S/he is so cute and looks so normal… no one would ever guess there was anything wrong.” Of course… those in the community are often convinced that they are seeing a ‘spoiled brat’, when that cutie can’t get what they want in the store… and a meltdown occurs. The meltdown may in reality be from the overstimulation of the sounds, lights, and smells of that store. One store, where I am forced to shop because of competitive pricing, actually sets me off. My eyes burn and my throat closes up… I’m convinced it’s probably the bug spray they use at night… when no one is around. I know that I can never take Sonny in there! Ugh!
6% Age: two. When Greg’s speech regressed, we worried about his hearing. He still sang entire songs and recited the alphabet with Bert and Ernie yet he had no conversational ability whatsoever.
7% Greg did not tolerate certain smells causing him to shriek until dinner was over. Family mealtimes were often ruined.
Greg despised the smell of chicken, pasta, or fish in the kitchen. He gave new meaning to the need for sameness. Greg ate Boston Style pizza from a pizzeria… almost every day.
I left Jay and Adam to dine alone while I took Greg out for a car ride, just to stop the agony.
We only thought of survival, unaware that we were teaching Greg he could avoid what he didn’t like by screaming.
< My Thoughts > “ certain smells causing him to shriek…”
Wiggins, et al. (2009) found that although usually tactile sensitivity and auditory filtering were reported the most by parents of children with autism, they found that the next highly reported problem was with abnormal responses to tastes or smells. In this sensory domain, children with ASD allowed only limited textures or temperatures in food. They avoided certain tastes, and they were described by parents as ‘picky eaters’ and displayed an aversion to tastes and smells.
Remember too, that in addition to what is described as ‘aversions’ are often met with shrieking or screaming, because the child’s sensitivity is way beyond the intensity that you or I experience. Hearing can be very acute when one is dealing with sensory issues.
7% With Greg around, we regularly formed new understandings about life.
We couldn’t see autism. Greg was an adorable little boy in appearance.
7% Undoubtedly, we had a child prodigy; we just didn’t know in what other areas he excelled.
8% Sheila is my friend who had the courage to tell me that she was worried. At the playground on day, she plopped her daughter into the swing next to Greg and said “Martha, I have to talk to you.”
…”Oh, no. What?” I asked her.
“It’s Greg. I’m worried about Greg. I think there is something wrong.”
She was the first person who had the guts to say it. What courage that must have taken.
How does one mother tell another there is a problem with her child? I cringed inside, looked at Greg, looked at the other children and knew in my heart she was right.
I will never know what it took for Sheila to venture into the unknown with me, but Sheila’s bravery that day earned my enduring respect.
Age three. Greg now spoke in dribs and drabs. We knew he could form words. Why didn’t he use them?
There was clearly a connection missing between Greg’s brain and his ears and mouth. Adam, Jay and I tried to talk to him, but he looked silently through us.
< My Thoughts > "There was clearly a connection missing... "
Bradshaw, et al. (2015), “The first 2 years of infant development are marked by rapid change and an explosion of cognitive, language, and social abilities.” “The second year of life is characterized by an exponential growth of verbal communication”…and “by the time children with ASD are identified and enrolled in treatment programs… the gap between their abilities and those of typically developing peers has often grown quite wide.”
8% After Sheila voiced her concern about Greg’s development; I called a pediatric neurologist and scheduled an appointment. While we were at his office for an examination… he insisted he did not want to share his diagnosis… but he knew.
< My Thoughts > "...he did not want to share his diagnosis… but he knew."
According to Oosterling, et al. (2010), “Screening in primary care is a sensitive issue because false positive results may cause parents unnecessary anxiety or may result in a cascade of avoidable further assessments, while false negative results may falsely reassure parents and delay an early start of interventions.”
8% He predicted and confirmed the diagnosis of PDD (Pervasive Developmental Delay), sharing his opinion that we had lifelong problems, therapies and anguish ahead. Greg was only three years old.
When Greg and I arrived home, Jay was waiting on the porch, and I gave him the short version. “We have a lifelong problem.” Jay’s piercing eyes turned watery. He understood.
The doctor made us wait for a letter in which he provided all kinds of information about Greg’s autism.
But, it remained for us to explore the system and find appropriate ways to help Greg. I now had to count on others.
< My Thoughts > “It remained for us to explore the system…”
Again my point about how, even today, parents are left to find out about autism on their own.
9% So, Greg was autistic? Why had no one said it before? They’d masked it as PDD. A sickening feeling spread through me as I finally understood.
10% Age four. Greg sat next to me at the kitchen table. I took out a marker and tried to draw Cookie Monster. Unable to communicate with my son verbally, I decided to try to connect with him through art. Greg showed that he was able to learn, but his learning was mainly visual.
I drew Cookie Monster for a month or so, and being unable to draw anything more complex, I didn’t try other characters.
< My Thoughts > “…I decided to try to connect with him through art.”
When Sonny was a 9-year-old, we persuaded the school district to try him in a more advanced school for their summer program (ESY) Extended School Year. I also had a position with that school, teaching an older group of children with disabilities. Because Sonny was non-verbal, non-diagnosed autistic, the principal had her doubts, but as it turned out… Sonny was recommended to attend that school in the Fall. Yea Team!!!! But, my point is that in this more ‘normal’ classroom he not only blossomed, but he made some unexpected friends.
There was a bulletin board by the door, as you entered the classroom. Sonny always stopped to greet the characters posted there. Much as one would genuflect when entering a church. The teacher remarked to me that Sonny didn’t seem to recognize her or the aide, but always stopped excitedly to coo and mumble to the gang on the wall. At first I didn’t have a clue, and then we realized that he had books at home filled with those characters… Elmo, Cookie Monster, and Big Bird. Now we had a way to connect with him… and we were able to get that much closer to understanding how he connected to the world around him.
10% Greg watched, said, “Go Dabba” and “more.” Speech appeared only in bits. After producing each new sketch with his scented markers, Greg smelled the Cookie Monsters.
At the beginning of the second month of drawing solo, I asked Greg if he wanted to draw. He picked up the marker and drew an animated Go Dabba. His drawing was full of personality, and his use of lines and expressions was more creative than anything I ever drew.
Greg told Jay to write “Dear Cookie Monster’ next to Go Dabba. We never discovered why Greg said these words. Perhaps he wanted Cookie to come for a visit? We had no clue why Greg placed Cookie’s boots next to him (in the picture).
At age five, he had advanced beyond me! He seemed to have taken the picture of a character from his mind and reproduced it on paper.
58% Greg ballooned to two hundred fifteen pounds by high school. I had to put away my biking shorts and hat, but the stronger Jay rode Greg around the town, the beach, along the river and various bike paths.
We needed to find a niche for Greg in high school by taking a careful look at his educational opportunities. …Special education classes or life skills… The words, “public education” have a collective connotation. Individualized instruction was not in the job description. To go through due process for Greg took years. We didn’t have years.
I met my match at the first teacher/parent conferences when the special education math teacher approached me, shook my hand and said, “Greg should not be here. He should be in life skills.” …She was resolute.
< My Thoughts > “Greg should not be here."
Reed & Osborne (2013) found in their study, that there were discrepancies between parent and teacher ratings of behavior of children with ASD. Information about a child’s abilities are discovered through the completion of a questionnaire given to parents, teachers, and caretakers. They are asked to complete these questionnaires and then the information is compared. In the ones they used, they found that there was evidence, but not widespread, that the stress level of parents in their sampling was a factor in how their child’s behavior was rated by them. Another factor, yet to be explored, were the personality characteristics of the teacher / caregiver involved with the child.
As Sonny’s parent, this tells me that even though I perform honestly on an inquiry to rate his behavior, my concerns for his future will come through in my answers. I might describe him as, and make him look ‘more’ needy, because I worry that they will expect him to function independently.
As a teacher of someone like Sonny, I may feel that some of the behavioral challenges he faces can be overcome, with the right programming (which I can provide). Or, depending on my classroom experiences, I may not be so optimistic and may want to spare the parent what I feel are false hopes about his/her abilities.
There is also another component… the school principal. The principal has a staff and a budget by which to hire that staff. If Sonny… or, Greg requires a one-on-one aide to be with him in certain settings… like inclusion, then that becomes a factor. I have seen aides who were no longer needed, because their student had moved on, lose their position. But, if that aide is in a school where a new student needs an aide with that specific kind of training, then problem solved. Or, if the principal has to ‘find’ funds to hire someone as a one-on-one for that child… then you see the hidden dilemma.
59% I wanted inclusion. Was there anybody who would listen and continue to educate Greg in a regular education class?
The music teacher listened. The art teacher listened. Greg’s remaining inclusive classes were non-academic courses. Not core (Reading, Writing, & Math).
Producing works of art independently was out of Greg’s reach. Greg demanded assistance on every task. He produced beautiful pots, clay faces of all his favorite Sesame Street characters, and paintings.
With help, Cindy encouraged Greg’s talents, never admitting defeat. She focused on the whole child, working on his socialization and behavior.
I had to change my expectations. Too many obstacles. I fought for my son until the fighting was done. Although I prayed for a miracle cure, it was not going to happen. This was not a common cold. Greg had autism. We moved him to a life skills class.
< My Thoughts > “We moved him to a life skills class.”
Actually, in the school systems where I have taught, the life skills class is where they implement the use of communication devices, introduce social skills, and show videos of behavior to model to. So, I see moving Greg to life skills class as a good thing. But again, it depends on the resources and programs available… and so on. My advice would be to show up frequently to see what’s going on. Teachers can always arrange for you to ‘hide’ behind a screen or partition, so as not to disrupt the process. And of course, you don’t want your child to be ‘warehoused’ there and not have other opportunities for academics.
If all you can get your principal to agree to is to ‘allow’ your child to attend Art, Music, and PE, then that’s a step. The atmosphere in those classes is usually more relaxed… and, requires use of different parts of the brain. So, even though it is not a core curriculum the child is offered, it is still a form of inclusion with ‘neuro-typical’ peers. You have to pick your battles. Smiles.
Lai, et al. (2012), “Despite language disabilities in autism, music abilities are frequently preserved. Paradoxically, brain regions associated with these functions typically overlap…” making it possible for learning musical pieces. Especially songs.
64% Communication continued to be Greg’s biggest problem. His inability to ask for a simple glass of water and other essentials made meeting needs impossible.
The high school sign language teacher decided to try signing. Since Greg’s brain did not process expressive language with spontaneity, maybe sign language provided an alternative.
Once a week, she came to life skills class to teach sign to the entire group of special needs students. Greg formed letters and paid attention, yet did not employ the new language.
One needed to make choices in order to sign. Greg hated choices.
65% I really have experienced that dark side of the universe.
85% Greg’s fingers showed evidence of his own personal attacks. For years during tantrums, he bit his fingers. Calluses built up to the point that when we held his hand, we felt the hard spots on each side of his index fingers.
To better understand why Greg exhibited this self-injurious behavior, I compared it to cutting. Cutters seek a release from the emotional pain that they are experiencing, and may cut on impulse.
Greg felt better when he bit his fingers. Maybe there was a release of endorphins that brought relief from whatever was causing Greg’s tantrums, thus making it a compulsive behavior. In many ways his puking mirrored cutting.
My hope was that Greg understood the pain inflicted on him by a fellow sufferer of autism as nothing personal. I wanted him to find peace from his personal demons as well.
< My Thoughts > “Greg felt better when he bit his fingers.”
Boesch (2015), “… an individual may not exhibit impairment in current functioning until environmental demands outweigh the individual’s capabilities.” One of those impairments causing self-injurious behavior is communication and/or language deficits. “SIB’s are behaviors causing direct physical harm to one’s own body, resulting in physical injury and tissue damage,” (exhibited through self-hitting, self-pinching, self-biting). Occasionally they will bite others nearby.
Boesch continues, “SIB’s result in numerous negative consequences for individuals with ASD, as well as”…others. These individuals “are often stigmatized and experience peer rejection, sibling disharmony, and rejection by teachers.” Yes, their ‘teachers’. This is especially difficult for teachers who have this student in an ‘inclusion’ setting with ‘typical’ peers. “The impact interferes with student instructional opportunities, thus significantly impacting their educational achievement and future occupational success.”
Boesch goes on to say that, “Remediation in functional communication is often recommended as an appropriate starting point…” In this particular case study the student, Mike, learned through a rigorous program, to give up his spontaneous ‘manual signing’ method of communication and switch to using a speech-generating device, appropriate for his level of function and age.
11% Greg needed the special education component, but he also needed to receive services that were Greg-specific.
85% True to their promises, Milestone Achievement Center never called to report a puking incident. Melanie conducted music therapy in their music room, calming Greg, guiding him through his stressful times. Alice worked on Greg’s speech.
Greg’s conduct improved enough for him to secure employment. He survived a few punches. After graduation he had a job. We felt accomplished.
86% The week after Greg’s high school graduation, I put Greg into the community bus especially created to take people with special needs to work. Once again, I trusted the “system” to deliver results.
At 3:30 pm that day, Greg’s aide, James, arrived at our house to take care of Greg until I returned home.
At 4:00 pm, I left work to visit my brother and run errands with him. James (the fellow who stayed with Greg after school) called my cell phone at 4:30 pm. “I don’t want to worry you, but I’ve been waiting for an hour and Greg isn’t home from work yet.”
I looked up the number of the bus company in my little phone book and called from my car. I called Greg’s supports’ coordinator who agreed that this was unusual. She offered to continue to try to reach the company for information.
87% I called James from the highway as I sped home… A panic attack was on the horizon as I envisioned the possibility that Greg was suffering, and I could not help him. At 5 pm, Greg was still not home. James called to say that he hadn’t seen the bus. Greg was now an hour and a half late from work.
Jay refused to carry a cell phone, but I knew he, too, was on his way home from work.
87% James called at 5:15 pm to tell me that Greg’s bus had just arrived. (I rushed home…). Greg bounced out of the bus, dashed into the house to go to the bathroom and I heard the driver tell James…
“I was completely lost. I dropped off my next-to-last passenger. Greg was the last. I drove around and around, but couldn’t find Regent Drive.”
…”So I turned to Greg and said, ‘Greg, we’re lost.’” “I knew Greg couldn’t talk and had special needs and was probably going to start freaking out…”
“All of a sudden, I saw a finger point left, and Greg said, ‘This way.’ I turned left. Then Greg pointed again and said, ‘This way.’ He did that until we turned the corner. I guess Greg figured that if he didn’t get involved, he was never going to get home. He’s the man!”
99% Greg is heroic. He is living life independently despite having severe challenges in communication, meeting simple demands and making meaning out of life. That’s what I have to accept, and it’s the most difficult acceptance there is.
Greg doesn’t need me anymore.
< My Thoughts > "Greg doesn’t need me anymore."
Ah, but that is not the end of the story... saga to be continued in Martha Squaresky's next book!
==============
References used in < My Thoughts > are:
Boesch, M., Taber-Doughty, T., Wendt, O., Smalts, S. (2015). Using a Behavioral Approach to Decrease Self- Behavior in an Adolescent with Severe Autism: A Data-Based Case Study; Education & Treatment of Children, Vol. 38:2, p305-328.
Bradshaw, J., Steiner, A., Gengoux, G., Koegel, L. (2015). Feasibility & Effectiveness of Very Early Intervention for Infants At-Risk for Autism Spectrum Disorder: A Systematic Review; Journal of Autism & Developmental Disorders: Vol. 45: 3, p778-794.
Gonzalez, et al. (2015). Developmental Surveillance & Referral in a Traditionally Medically Underserved Border Community. Journal of Maternal Child Health. V19:p.2323-2328.
Krauss, M., Seltzer, M., Jacobson, H. (2005). Adults with autism living at home or in non-family settings: positive and negative aspects of residential status. Journal of Intellectual Disability Research; Vol. 49; p 111-124.
Lai, G., Pantazatos, S., Schneider, H., Hirsch, J. (2012 ). Neural Systems for Speech & Song in Autism. Journal of Neurology; Vol. 135:3, p. 961-975.
Major, N., Peacock, G., Ruben, W., Thomas, J., Weitzman, C. (2013). Autism Training in Pediatric Residency: Evaluation of a Case-Based Curriculum. Journal of Autism & Developmental Disorders; 43:1171-1177.
Oosterling, I., Wensing, M., Swinkels, S., Van der Gaag, R., Visser, J., Woudenber, T., Minderaa, R., Steenhuis, M., Buitelaar, J. (2010). Advancing early detection of autism spectrum disorder by applying an integrated two-stage screening approach; Child Psychology & Psychiatry, Vol. 51:3, p250-258.
Reed, P. & Osborne, L. (2012). The Role of Parenting Stress in Discrepancies Between Parent and Teacher Ratings of Behavior Problems in Young children with Autism Spectrum Disorder (ASD). Journal of Autism Developmental Disorders, 43:471-477
Wiggins, L., Robins, D., Bakeman, R., Adamson, L. (2009). Brief Report: Sensory Abnormalities as Distinguishing Symptoms of Autism Spectrum Disorders in Young Children; Journal of Developmental Disorders, Vol. 39:7, p187-191.
==========
