A Friend Like Henry by Nuala Gardner, eBook 2008 Edition; an Extended Review with < My Thoughts > by Sara Luker
Excerpts from the book (2% indicates location in the Kindle version of the book, instead of page numbers.)
2% For over two years, our days consisted of surviving tantrums of epic proportions. They were epic in terms of both duration and the ferocity of the frustration and anger that was being unleashed by Dale due to his inability to communicate with us on any level. Dale had no idea who we were and we feared we would never be able to reach him.
< My Thoughts > “…no one would listen to me for another two years, when finally, aged almost four, Dale was diagnosed with classical autism.”
Laura Crane (2015) from the University of London explains that parents “usually waited
a year from when they first had concerns about their child’s development before they sought professional help. On average, there was a delay of around 3.5 years from the point at which parents first approached a health professional with their concerns to the confirmation of an autism spectrum disorder diagnosis.”
2% Dale had no idea who we were, and we feared we would never be able to reach him.
< My Thoughts> “Dale had no idea who we were…”
There are many articles on the ‘signs of autism’ in a child,
but professional articles are scarce. Often this oddity of not recognizing or responding to parents, siblings, or caregivers is embedded in ‘Red Flag Lists’. For instance, early signs in babies…
2% …at a children’s Christmas party…Dale reacted as though Santa himself was a monster… Dale clung to me as though his very life depended on it.
On witnessing my son’s reaction, a nursing colleague gave me a word that made sense of Dale to her, but it left me feeling as though she had just told me my son had cancer.
She said Dale reminded her of a group of children she had worked with in the past, and they were autistic.
Excerpts from the book (2% indicates location in the Kindle version of the book, instead of page numbers.)
2% For over two years, our days consisted of surviving tantrums of epic proportions. They were epic in terms of both duration and the ferocity of the frustration and anger that was being unleashed by Dale due to his inability to communicate with us on any level. Dale had no idea who we were and we feared we would never be able to reach him.
< My Thoughts > “…no one would listen to me for another two years, when finally, aged almost four, Dale was diagnosed with classical autism.”
Laura Crane (2015) from the University of London explains that parents “usually waited
a year from when they first had concerns about their child’s development before they sought professional help. On average, there was a delay of around 3.5 years from the point at which parents first approached a health professional with their concerns to the confirmation of an autism spectrum disorder diagnosis.”
2% Dale had no idea who we were, and we feared we would never be able to reach him.
< My Thoughts> “Dale had no idea who we were…”
There are many articles on the ‘signs of autism’ in a child,
but professional articles are scarce. Often this oddity of not recognizing or responding to parents, siblings, or caregivers is embedded in ‘Red Flag Lists’. For instance, early signs in babies…
- doesn’t make eye contact when being fed
- doesn’t smile back
- doesn’t respond to familiar voice or to their name when called
- doesn’t try to get your attention, other than in an extreme way… tantrum, screaming, or other disturbing behavior
- appears disinterested in what is going on around them… or, who is with them
- seems not to hear (often parent rush to have child’s hearing checked, only to find that is not the problem)
2% …at a children’s Christmas party…Dale reacted as though Santa himself was a monster… Dale clung to me as though his very life depended on it.
On witnessing my son’s reaction, a nursing colleague gave me a word that made sense of Dale to her, but it left me feeling as though she had just told me my son had cancer.
She said Dale reminded her of a group of children she had worked with in the past, and they were autistic.
7% …I observed how different he remained from other children his own age.
The gap between Dale and them became increasingly enormous as time went by.
…I noticed he had no symbolic or imaginative play.
…(He) didn’t notice anyone else’s presence.
< My Thoughts > “…I observed how different he remained from other children his own age.”
One reason parents may not be aware of differences at first is that they may be very subtle, especially if the child is high functioning otherwise. Another reason so much time passes before questions arise may be that the child isn’t old enough to have clearly passed up their early developmental milestones (early on-set autism), before the pediatrician gets excited. Even children who have had some language and begin to lose it (regressive autism) don’t send up clear red flags to family or pediatricians. They just think the child is working on motor skills and language loss is temporary, an easy mistake for doctors and family to make.
Then there is the physician who tries to reassure the anxious mother with “some kids are late bloomers”. And the grandma who says “you didn’t even crawl… you just got up and walked at 9 months.”
Another scenario is that gradually, the family begins to accommodate their child’s behavior in order to keep the peace and before long this no longer ‘works’ for the parents. But to stop being compliant to the child wishes means severe tantrums and now the parents seem to be the unreasonable ones.
8% At the age of fourteen months, Dale suddenly found his feet. There was no in between stage; one day he was crawling, the next he was literally up and running.
I informed the medical professionals that he had developed a strange, tiptoe gait when walking, but they remained unconcerned. Now that Dale was walking, however, new and more challenging problems surfaced. …he seemed to have no comprehension whatsoever of even the simplest language.
< My Thoughts > …he seemed to have no comprehension whatsoever of even the simplest language.
Dale had only some of the ‘markers of autism’ among the many he didn’t seem to have. This would make it hard for family and physicians to show any real concern. One of the markers mentioned here would be –
“…he seemed to have no comprehension whatsoever of even the simplest language.”
From the Speech & Language Section of a typical autism questionnaire given to parents by evaluators: is (child)… ‘unable to use or understand the simplest language.’ Parents check a 1 – 5 occurrence; 5 being the greatest or most often. Because the therapist cannot quiz the non-vocal child, parent quizzes derive needed information.
8% …I tried to teach him to understand the two most basic and useful words in the English language: yes and no. He finally learned to love the concept of yes as it brought all good things his way. No was a different story.
…Dale’s limitless supply of energy had become one of our biggest challenges.
< My Thoughts > “limitless supply of energy”
Sometimes parents first take their child to visit the doctor because of the hyperactivity and this “overwhelms the clinical diagnosis” and other signs of autism are overlooked. Hyperactivity does not indicate autism… but, children with autism often exhibit hyperactivity.
The symptoms of hyperactivity, according to the latest from NIH, National Institutes of Health – the child will constantly be in motion, dash around touching or playing with everything in sight, talk nonstop, fidget and squirm in their seats, have trouble sitting during mealtimes or in school.
8% His running was repetitive, almost ritualistic, and without purpose.
< My Thoughts > The key words that we hear mom saying are “repetitive, ritualistic and without purpose.”
When the child is ‘driven’…’acting pervasively’…or, otherwise insistent on doing that behavior which seems odd or unusual, in that particular setting.
8% If anyone tried to stop him he would respond with a tantrum so extreme that nothing we said or did would get through to him.
< My Thoughts > “Can’t stop repetitive behavior.”
Restrictive repetitive behavior (RRB) are an expression of autism, but not unique to just autism. According to Harrod (2013), most children with autism will exhibit RRB’s at some point, but not all will act pervasively. In typical development, RRB’s will lead to mastery of a skill or task. In children with autism there are seen two kinds of RRB’s; ‘lower order behaviors’ and ‘higher order behaviors.’
‘Lower order behaviors’ are characterized by repetitive manipulation of objects, like spinning a wheel or lining up cars. While ‘higher order behaviors’ are more ritualistic in nature where the child will only walk a certain way across the room, for example.
My son’s bedtime ritual is somewhere in between. It’s his ritual but I have to do it. Smiles. The bed gets turned down; the floor lamp gets turned-on then turned-off. Then he get in bed (a certain way), then the ceiling light and fan get turned off twice and turned back on. The TV is left on, but turned down and he has certain books he takes to bed with him, too. Of course, if he’s not sleepy, the whole ritual is repeated over and over, or until he is… or, one of us passes out. Smiles.
8% He would charge across the room, bounce himself off the wall to gain momentum, and race back again – droning continuously… sometimes in a happy tone, sometime anxious.
< My Thoughts > “…sometimes in a happy tone, sometime anxious.”
Children with autism, when over stimulated through brain synapse, sensory overload, or whatever is playing out in their head…can react in a manner which looks like a tantrum or an episode of some kind. The causes of this can be either from a sense of sadness and/or anger…or a sense of happiness and jubilation.
When someone reported that Sonny was hitting his head with a clenched fist…we would ask – “Is it happy hitting or mad hitting?” Often times he would be smiling while severely clubbing himself on the head.
Either way, we cue him with, “Hand down,” and try to distract him without getting in the way of his fist. We have developed very good reflexes, as a result. We still, after all these years…try to figure out what could have brought it on. Of course, we cannot see inside his head…where it not doubt had some kind or disturbance.
Sometimes the behavior is a result of an earlier insult. For instance, he can’t find something he’s looking for… or, a scene on TV was over before he was ready for it to be. Smiles.
8% He had no sense of danger. …he knew how to use kitchen drawers as ladders if he wanted to climb up to sit on the stove.
< My Thoughts > “He had no sense of danger.”
Sicile-Kira (2014), in her paragraph on ‘Safety’ explains that “most children with ASD have no notion of safety. This is an area often overlooked yet vitally important, and can range from not understanding the dangers of traffic or fire to not understanding the possibility of personal danger from strangers or aggressive individuals.”
8% Mealtimes were another challenge. Dale was rarely hungry and in order to get him to eat at all, I tried to arrange the food in the shape of cars or Mickey Mouse or serve it on novelty plates.
< My Thoughts > “Dale was rarely hungry…”
There are all kinds of special diets for special kids. Maybe the child doesn’t like the look, feel, smell, taste of the food. It could mean he/she has sensory issues with food. Then there are some medications which can affect the appetite, any food can distress them.
The study by Sharp & Jaquess (2009) shows that there can be many different causes for ‘food aversion.’ When designing treatments for pediatric feeding disorders, particularly among children with autism, they try to identify the cause. They look at whether the child has poor oral motor skills (chewing and moving the food around in the mouth).
Or, they try to discover if the child demonstrates highly selective eating patterns, such as type and texture of food, as well as food color, shape, and presentation. In this study, they even looked at whether or not this was an ‘escape’ behavior and not really about the food. For children in the study who were only drinking PediaSure or eating only pureed baby food, they designed a transition program to slowly introduce solid foods.
When Sonny was 7 years old he only drank milk from a bottle. Baby food, when accepted, was sucked into his mouth from the spoon. The school therapist showed us (when we had him for visits, prior to becoming his foster parents) how to take him from this point to that of chewing a bagel with peanut butter on it.
This transition to solid food took us a little over one year.
Sometimes feeding him this way worked, but even then, more food would end up being thrown all over the floor.
9% …rejecting everything except sausages, French fries, chicken nuggets and pizza.
< My Thoughts > “pizza.”
Therapists used to say that pizza is okay because you can pile on nutritious foods and cover them with melted cheese. But, I’m not certain if that is still the prevalent thought. Certain diets may call for gluten-free crust and dairy-free cheese.
One parent shared with me that his son would not eat homemade pizza, only Joe’s Pizza from a neighborhood take-out. He said he often ordered pizza to be delivered in the middle of the night because his young son woke up screaming for pizza. That became their nighttime ritual.
9% If I introduced so much as a single pea or slice of carrot, he would protest by vomiting at will.
< My Thoughts > … “he would protest by vomiting at will.”
Sonny has vomited (not merely spit out) pills that didn’t agree with him. How did he know? And, if you try to get a vegetable covered with ketchup or p-nut butter past him… when you least expect it… out it comes… whole and unadulterated!
8% He would not let us hold his hand and would throw himself on the ground in fury if we tried…
9% My mum got him to drink liquid when he learned to like milky tea without sugar, and to this day Dale has never refused the offer of a cup of tea.
10% Dale would want to stay in the park for over four hours and even then would not want the visit to end. The whole experience had to be entirely on his terms. While there he had a set routine of rituals that had to be adhered to in order to prevent tantrums occurring.
His disapproval would be registered with a tantrum of mammoth proportions.
I had to carry him while he screamed, punched continually, kicked my shins, scraped his fingernails down my face, or tried to bite me to demonstrate the full force of his rage.
Jamie (my husband), I knew, had still been clinging to the belief that Dale’s behavior was the result of his premature birth and that things would improve over time.
But somewhere deep within me, the feeling of doom about the future was steadily becoming stronger.
10% Through dogged persistence, my mother had got his first word…at twenty-six months of age.
“Tree, Dale, tree,” and on this day she was utterly stunned to hear in reply a wonderful voice she had never heard before.
“Tree,” Dale shouted back with considerable enthusiasm. “Tree!”
11% I beamed at my mother, who observed, “If we can get one word, we can get two.” Dale seemed delighted with his new word, but the enormity of what would be involved in teaching him more soon became apparent.
12% In addition to those difficulties, Dale was still not toilet-trained.
< My Thoughts > “…still not toilet-trained.”
Toilet training brings on a whole new set of anxieties for parent and child. Flushing the toilet is very scary for some toddlers. Today’s diapers keep wetness off the child’s skin… so, you have to either use old fashion cloth diapers or put the child in underwear. For girls, pretty ones they won’t want to get wet. And for boys, superhero or those they like… for the same reason. It is easier to teach boys to sit for urination, even though ‘shooting down the Cherrios target’ is much more fun. Another tip is to increase fluids for a day or two before you start training. Also, interactive books with favorite characters can help to pass the sitting time. Also, interactive books with favorite characters can help to pass the sitting time. Sonny likes Sesame Street’s Elmo’s Play-a-Song, Potty Time Songs and Potty Time with Elmo.
Abstract from Cocchiola, et al (2012) –
“We describe an intervention program to toilet train 5 children with autism or developmental delays who demonstrated no prior success in the home or school setting. Intervention focused on (a) removal of diapers during school hours, (b) scheduled time intervals for bathroom visits, (c) a maximum of 3 min sitting on the toilet, (d) reinforcers delivered immediately contingent on urination in the toilet, and (e) gradually increased time intervals between bathroom visits as each participant met mastery during the preceding, shorter time interval. The program was effective across all 5 cases in a community-based elementary school.”
12% … (I heard) Dale’s cries of joy and laughter, smash, laugh, smash, and a louder laugh.
I hurried to find him standing barefoot in a sea of broken wine glasses.
I froze as he lifted up the next glass.
< My Thoughts > “… Dale’s cries of joy and laughter, smash, laugh, smash, and a louder laugh.”
From the studies I have read, and from my personal experience in the home and in the classroom, destructive behavior is very difficult to extinguish. Overall, behavior modification can include this, of course. But when you try isolating this behavior by offering reinforcers, such as time on the iPad, or time in front of the TV, then those very reinforcers often become the target. Why? Maybe because the child values them more… so, they get a greater ‘smashing’ high. Just guessing. We have always had a clear plastic shield in front of all our TV’s, for that very reason. The first time Sonny put his fist through our flat screen TV was a very costly lesson. Pain all the way around!
12% …I knew I couldn’t go on like this. Taking a huge deep breath, I composed myself and at last resolved that it was time to get help.
13% Suddenly I could contain my fears no longer and asked the psychologist directly, “Is Dale autistic?”
My words were left hanging in the air for several moments before she replied, “We are thinking along those lines, yes.”
Something inside me died.
“Is that the fancy name for it?” my mum replied. “Never mind, he’s still our Dale and we’ll do whatever it takes to help him.”
…we were shocked to learn there was no provision for children like Dale. Luckily, Dale and two other children would receive help from the head teacher at the Pre School Language Unit of a local primary school…for one and a quarter hours on Monday morning.
14% This is where I embarked on a major battle to increase the amount of help Dale would receive. It was infuriating that these children needed the most input and experience with their peers but were getting the least.
We asked psychologist Mary Smith to refer Dale to Yorkhill Hospital in Glasgow, in order to get a recognized diagnosis from a proper authority which would strengthen his case.
17% Attending to Dale’s needs became even more of a battle as his rituals and obsessions grew increasingly rigid and unpredictable.
I started having panic attacks and would be awake all night…desperately anxious about what the next day would bring.
< My Thoughts > What are Panic Attacks?
“Something feels dangerously wrong. A few minutes ago, something felt off, but you weren't sure what it was. Then it got worse. You started to feel weak. Your heartbeat started to race. Suddenly it starts to cascade out of control. You feel lightheaded - maybe a little dizzy - and your brain doesn't seem like it's working correctly. Your legs may feel weak, you may have a bit of chest pain - you can't seem to get a full breath.”
“It starts to get worse. Now you're certain something's wrong. The symptoms are getting worse and you're barely able to hold it together. This is the end, you're sure of it. You might die - you know it. You have an instant feeling of pure dread, and then it sort of fades away.”
“You're left wondering what happened. You're left believing that you may have just had a heart attack, or a brain aneurism, or some sort of terrible cancer. But what you really had was a panic attack - an anxiety attack so severe that it caused a combination of intense physical and emotional symptoms.” Retrieved from: http://www.calmclinic.com/panic/attacks, on May 2015
3% …I was suffering from stress and exhaustion… During the period of uncertainty and anxiety, the best advice to alleviate this condition was to try and reduce stress as much as possible, and to this end Jamie suggested it would be good to get me away.
< My Thoughts > “I was suffering from stress and exhaustion… ”
Johnson (2013) offers the maxim…“Parents are only as happy as their unhappiest child.”
Johnson found that the authors she read tended to conclude that the degree to which the parents suffer may be due to their feelings about “(a) concern over the permanency of the condition; (b) poor acceptance of autistic behaviors by society and, often, by other family members; and (c) the very low levels of social support received by parents.” She also found that mothers reported stress more than fathers. Also, parents state that their child rarely does things “that make me feel good.”
3% Jamie called his cousin David who lived with his wife, Isobel, in the large Scottish village of Auchterarder…
As soon as we arrived, Dale ran straight out to the back garden and as usual began what we came to call his Chariots of Fire relentless running routine.
< My Thoughts > “ his Chariots of Fire relentless running routine.”
Or, as my grandmother would say… “Running to Hell and back.” I’m not sure what that means… but it seems appropriate here.
3% Locked into this ritual, he would give a droning noise as he ran and would do this for ages if you let him. We got this name from the eighties film of the same name about Olympic run
Isobel attempted to divert Dale’s attention to a small soccer ball, but he resented the intrusion and continued with his run.
Undeterred, she told him, “This is one of the balls the dogs play with. Shall we go and get them?” Dale ignored her completely.
David nonetheless went into the house and liberated their two Scottie dogs, Barney, totally black, and Dougal, completely white, who came scampering out in full play mode, anxious for someone to throw their ball for them.
To Jamie’s and my surprise, Dale’s face instantly lit up, and David and Isobel proceeded to show him the dogs’ favorite game.
< My Thoughts > “Dale’s face instantly lit up…”
Sometime with our kiddos, the novelty of just the right thing at just the right time can be a hit! Can one sustain that interest and engagement is the question. My motto is to just keep trying by introducing it again at a different time… the interest may return, but don’t insist if it doesn’t… just give it again another time.
3% Dale seemed enchanted as he threw the ball, which Dougal promptly returned to him, dropping it at his feet.
Dale kept going, continually repeating the command Isobel had taught him. “Fetch!” Jamie and I stood by in amazement as for the very first time, our son interacted and played happily and naturally with another living being, something we’d never witnessed before.
“I can’t believe what I’m seeing,” Jamie told David. “If we were visiting anyone else, he’d be tuned in to a video by now.”
“Ever thought of getting a dog yourselves?” David asked innocently. “We need a dog like we need a hole in our heads,” was Jamie’s subtle rejoinder.
(A couple of days later, and several trips to the Library…) I didn’t hear Jamie come home…I quickly tried to hide the book under a cushion…” What are you up to?” he inquired suspiciously.
Conceding I’d been keeping a secret, I showed Jamie the book cover with a golden retriever on it. Then as his jaw dropped, I tried to plead my case.
Jamie’s response was tactful, sensitive, and to the point: “Are you nuts?”
A skeptical husband, however, cannot stand in the way of a wife on a mission, and the day inevitable came when we went to see the pups… (a vet told me about)…
We tried to explain the outing to Dale, but he clearly didn’t understand.
As Val showed us into her living room, Dale was quiet and withdrawn. He remained this way despite the deafening noise of dogs barking in the back room.
Val (left the room and) reappeared with two of the cutest bundles of fur under each arm.
When she set the pups down to run around, I was enchanted,
…but Dale ignored them completely. Worse, he started to rock and moan as if it were all too much for him.
Picking up on this, Jamie told me quietly, “This isn’t going to work, Nuala.”
Disappointed, but not about to lose hope, I replied, “Let him at least see the pups for a while.”
“He is seconds away from a tantrum” hissed Jamie.
Then to our dismay, Dale suddenly pointed to the bookshelf beside the television, exclaimed with great excitement, “Thomas!”
5% (With the video on…) he promptly kicked off his shoes, and settled down to watch from the big armchair in front of the TV, now totally content.
Even though Dale only had eyes for Thomas, I wasn’t yet ready to give up. I knelt down and began to play with one of the pups to try to catch Dale’s attention but to no avail.
“Maybe when the video’s finished…” I added hopefully.
But Jamie was emphatic. “He doesn’t want this, Nuala.”
Heavily disappointed, I had to concede. Then one of the pups wandered over to Dale’s chair and tried valiantly to clamber up onto it.
…rewarded with a helpful push…the pup…snuggled in beside Dale.
“Look at that,” I told Jamie… Dale was still engrossed the video but he was now also gently stroking the pup’s back – though he hadn’t so much as glanced at it.
< My Thoughts > “Dale was still engrossed the video but he was now also gently stroking the pup’s back – though he hadn’t so much as glanced at it.”
One of my students with Asperger’s confided in me that teachers think he is being rude or disrespectful because he is often engaged in two or three activities at one. “I pay attention” he said. “I don’t have to be 'looking' to know what’s going on.” I also hear the lights buzzing, the cars driving by outside, and the kids running down the hallway.” Often their filtering systems just don’t work, or they really don’t have any at all.
5% “Have you got a new friend there, Dale?” This little fellow needs a name. Can you think of a name for him, Dale?”
Dale simply leaned around her to see the TV, and at that very moment his favorite engine appeared on the screen. “Henry, Henry,” Dale cried and excitedly pointed with delight to the screen.
“Henry?” repeated Jamie, before muttering, “The poor thing’s doomed from the start.”
Val lifted up a floppy ear and wrote a big H in black felt tip pen, much to the delight of Dale, who found this hilarious.
While Jamie wrote out the check, I asked Val if she’d be prepared to take Henry back if his welfare started to suffer at Dale’s hands, and she confirmed she would.
We needed time to prepare Dale for this big change in his life. Val was happy to look after Henry for another two weeks while we set about trying to help Dale understand what was about to happen.
Jamie made a very professional countdown calendar, showing a picture of a specific dog item for each day, and Dale would tick off the appropriate item on a daily basis to give him a concept of time going by.
< My Thoughts > “Dale would tick off the appropriate item on a daily basis to give him a concept of time going by.”
Having a visual checklist and/or calendar to help prepare for an upcoming event is very useful to parents and children alike. There are calendars an organizational apps available on iPad.
6% We used a toy cuddly puppy on whose ear I had written a similar “H” to the puppy’s to reinforce our efforts…
…I could tell by the interest in his face that he seemed to be taking some of it in. How much or little I couldn’t know, but it was always worth a try.
< My Thoughts > The parents used very good strategies here to reinforce the upcoming event. Today’s technology would allow a phone photo of Dale and Henry at Val’s house to use as well.
6% We arrived at Val’s and as before, Dale went through the door without saying a word, but he was at least in a calm, good mood. He stayed close by my side as Val left us in the lounge to go and get young Henry.
When she came back with our pup…Val told me, “You’d better take him, Nuala, he’s a big lump now,” and passed Henry over to me.
…his two big front paws rested on my shoulder, with Dale contentedly stroking his back, I hugged him to me, nestling his soft downy coat and them placing a kiss on the top of his head.
What neither of us knew then was that this beautiful little pup was to change all of our lives forever.
17% (Meanwhile, in desperation after the panic attacks)…I wrote to…the head teacher of the Struan House School, who helped arrange an appointment for us to see…a professor of child psychology. We spent a full morning with her…
…Finally, after appointments with thirteen different professionals over a sixteen-month period, and Dale aged three years and eleven months, a diagnosis was made.
Dale had classical autism. At last we were to be allowed the dignity of acknowledging our son’s disability for what it actually was.
< My Thoughts > “Dale aged three years and eleven months, a diagnosis was made.” “Dale had classical autism. At last we were to be allowed the dignity of acknowledging our son’s disability for what it actually was.”
Sicile- Kira (2014), “…it is important that you have a diagnosis as early as possible, in order to access services.” “Research shows that our brains have neuroplasticity, which means that they continue to reorganize themselves by forming new neural connections throughout life.” “Many children with autism can improve and even recover from any challenges that keep them from living productive and happy loves. We are also learning to identify the strength that many on the autism spectrum have, and how to help each individual build on his or her talents.”
18% (The night we brought Henry home) Jamie and I had to go out for dinner with friends who were leaving the area, and so Mum and Dad came round to watch Dale and Henry.
(Upon returning home, after our evening out) I noticed something different. The fleecy lining that I had bought for (Henry’s) bed had been thrown across the room and Henry was now lying on Dale’s blanket with patterned trains on it.
19% …when Mum had tried to settle Henry down for the night…Dale had proceeded to lift Henry and wrap him in the blanket, saying, “Bedtime, Henry.” Mum and Dad had been pleasantly shocked by this unexpected communication and of course I was thrilled.
We woke up the next morning to two things: the surprise that there was no Dale in the middle of our bed and a lot of noise from him downstairs.
“What’s all the commotion?” asked Jamie… “That’s not commotion, its communication. Listen to all the language he’s using.”
…Dale was saying, in an uneven, sing-song style, “Henry puppy, Duck, puppy…Give it to Dale.” All of this was punctuated with shrieks of laughter and little yelps from Henry as the two of them engaged in boisterous play together.
< My Thoughts > “Dale had proceeded to lift Henry and wrap him in the blanket, saying, “Bedtime, Henry.”
Remember the study discussed earlier? The results showed that the pet-child relationship was more qualitative (quality of pro-social behavior… ‘offering to share’ and ‘offering comfort’) than quantitative (number of times this behavior occurred).
19% We’d never heard our son play so verbally or joyfully before with anyone either human or animal. When we finally went downstairs, we didn’t care about the puddles and mess on the floor…
…thankfully (Henry) just took everything in his stride. We had all bonded already with this gorgeous little bundle of joy, who had rapidly become a major part of the family.
(Dale) had suddenly been transformed from a lost and lonely child into a happy little boy, who at last had a friend to give him a sense of purpose.
< My Thoughts > There is not too much in the literature specific to using animals as an intervention to benefit children with autism. Sonny was very afraid of dogs, in the beginning, especially yappy miniature breeds. They set him off the same way a crying baby does. But, he loved our Calico cat and both our Golden Retriever and Yellow Lab.
The lab was a service dog, which my husband trained, and Sonny soon learned to work that to his advantage. The lab was very cooperative and always seemed to know when Sonny wanted either the cupboard or the refrigerator opened… so Sonny could treat both himself and the dog to whatever was inside. The cat served no real purpose for Sonny except that she was soft to pet and sometimes ran around the house jumping on furniture the same way he did… kindred spirits!
19% Our home had come to life in a sense we had not known before Henry crossed the threshold and began to work his special kind of magic.
< My Thoughts > “Henry crossed the threshold and began to work his special kind of magic.”
While pets are often used, sometimes inadvertently, to add solace and comfort to a setting… animals in the home, hamsters and rabbits in the classroom, real studies are few although much is written for the layman.
Grandgeorge and her colleagues (2012), did a study that “evaluated the association between the presence or the arrival of pets in families with an individual with autism and the changes in his or her prosocial behaviors.”
This was a rather large study of 260 individuals with autism who had the ability to engage in pro-social behavior. Two groups were assessed (through a parent questionnaire) about the presence or absence of pets in the household and whether or not new pro-social behavior occurred in the child with autism.
In one group the children had been born into a household with a pet. In the other group, called the ‘pet arrival’ group, 5-year-old children were given a new pet. The results showed that the pet-child relationship was more qualitative (quality of pro-social behavior… ‘offering to share’ and ‘offering comfort’) than quantitative (number of times this behavior occurred). The conclusion was that more related studies were needed to better understand how the ‘pet-child’ relationship might improve pro-social behavior in the ASD child.
19% We wanted Dale to learn how to take care of his dog and ensured he was fully involved with all aspects of looking after Henry. We hoped that in addition to the benefits this would have for Henry, Dale might also learn some things about looking after himself in the process.
Then, the ‘motivation’ to act can be encouraged or discouraged by the way the act is received. “For every action, there is a reaction.” If the response to the action fills a need, then we are most apt to repeat that action. If the response to the action doesn’t fill a need for us then we quickly abandon it.
Then, for the child with autism, there is another component. If the action is done with or for another, the child can be an observer of the action/reaction… Therefore, they are not directly involved. In other words, the child only has ‘one foot’ into the world in which the event (learning a skill or behavior) is occurring.
Then, of course, when Dale washed the dog… then washed himself… he was ‘generalizing’ the skill. He was able to take the learned skill (of washing the dog) and apply it in a different way (to washing himself). So, this was less a ‘mimicking’ event and more of a social event of caring for his pal, Henry. This is my interpretation of why Henry played such an important role in Dale’s learning self-help skills.
21% A further obstacle was that he would never get a bath until his trains had been placed round its perimeter, one at a time, in the precise order he wanted.
Dear Henry came to the rescue again. I simply plopped him in the bath…and amazingly Dale followed.
Dale’s aversion to having his hair brushed was reduced by adopting the same approach. I would take a brush to Henry…
21% We brushed Henry’s teeth…and this gave him independence in caring for his own teeth.
22% …dog stories and videos helped to lessen his need for Thomas, and his growing love of all things canine eventually led to a significant expansion of his social world…
< My Thoughts > “helped to lessen his need for Thomas”
This would also be an opportunity to give Dale an option from watching “Thomas the Train” videos and expand his world. Mom could get/make videos of dog shows, dog training, or otherwise ‘dog’ related videos to switch off with the beloved Thomas shows. For very young children, parent can say, “Let’s watch 3 minutes of this new video I bought… before we watch Thomas.” You would have both videos available for the child to see… and set a timer for the 3 minutes. Eventually, you can extend the time and hopefully the child will ask to watch both videos… the favorite and the new one.
22% A whole new world opened up as we visited dog shows and went for regular walks with Henry.
< My Thoughts > “whole new world opened up…”
Dale is now a participant in life, not just an observer. This is the perfect opportunity to work on skills for reading, writing and mathematics. Some ideas would be…
22% When people stopped to pet Henry and comment on him, this only served to increase Dale’s interest in his dog, as well as dramatically improve his socialization skills.
…Dale was due to start school in August, although a particular worry remained; at almost six years of age, he was still not fully toilet-trained.
23% One day, after a successful pee from Henry in the garden, followed by his reward, Dale and I went back into the house.
“I need a wee. Don’t want to make the house all dirty and smelly.”
I never put a diaper on Dale again…
< My Thoughts > This enchanting book continues on to include the reader in the drama which tells of Dale’s future and his sister Amy’s brush with death.
End of excerpts from the book
===============
REFERENCES used in < MyThoughts > are:
Crane, L. (2015). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom; Division of Language & Communication Science, City University London, UK; March 25, 2015.
Grandgeorge, M. (2012). Does Pet Arrival Trigger Prosocial Behaviors in Individuals with Autism?;
Public Library of Science: San Francisco, CA.
Harrop, C. et al. (2013). Restricted & Repetitive behaviors in ASD and Typical Development: Cross-Sectional & Longitudinal Comparisons; PACT Consortium: 14 November 2013; New York
Johnson, J. (2013). Parental Stress in Autism Spectrum Disorders; Autism Research Review International: Fall 2013.
Sharp & Jaquess (2009). Bite Size & Texture Assessments to Prescribe Treatment for Severe Food Selectivity in Autism; Behavioral Interventions 24:157-170.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.
=============
The gap between Dale and them became increasingly enormous as time went by.
…I noticed he had no symbolic or imaginative play.
…(He) didn’t notice anyone else’s presence.
< My Thoughts > “…I observed how different he remained from other children his own age.”
One reason parents may not be aware of differences at first is that they may be very subtle, especially if the child is high functioning otherwise. Another reason so much time passes before questions arise may be that the child isn’t old enough to have clearly passed up their early developmental milestones (early on-set autism), before the pediatrician gets excited. Even children who have had some language and begin to lose it (regressive autism) don’t send up clear red flags to family or pediatricians. They just think the child is working on motor skills and language loss is temporary, an easy mistake for doctors and family to make.
Then there is the physician who tries to reassure the anxious mother with “some kids are late bloomers”. And the grandma who says “you didn’t even crawl… you just got up and walked at 9 months.”
Another scenario is that gradually, the family begins to accommodate their child’s behavior in order to keep the peace and before long this no longer ‘works’ for the parents. But to stop being compliant to the child wishes means severe tantrums and now the parents seem to be the unreasonable ones.
8% At the age of fourteen months, Dale suddenly found his feet. There was no in between stage; one day he was crawling, the next he was literally up and running.
I informed the medical professionals that he had developed a strange, tiptoe gait when walking, but they remained unconcerned. Now that Dale was walking, however, new and more challenging problems surfaced. …he seemed to have no comprehension whatsoever of even the simplest language.
< My Thoughts > …he seemed to have no comprehension whatsoever of even the simplest language.
Dale had only some of the ‘markers of autism’ among the many he didn’t seem to have. This would make it hard for family and physicians to show any real concern. One of the markers mentioned here would be –
“…he seemed to have no comprehension whatsoever of even the simplest language.”
From the Speech & Language Section of a typical autism questionnaire given to parents by evaluators: is (child)… ‘unable to use or understand the simplest language.’ Parents check a 1 – 5 occurrence; 5 being the greatest or most often. Because the therapist cannot quiz the non-vocal child, parent quizzes derive needed information.
8% …I tried to teach him to understand the two most basic and useful words in the English language: yes and no. He finally learned to love the concept of yes as it brought all good things his way. No was a different story.
…Dale’s limitless supply of energy had become one of our biggest challenges.
< My Thoughts > “limitless supply of energy”
Sometimes parents first take their child to visit the doctor because of the hyperactivity and this “overwhelms the clinical diagnosis” and other signs of autism are overlooked. Hyperactivity does not indicate autism… but, children with autism often exhibit hyperactivity.
The symptoms of hyperactivity, according to the latest from NIH, National Institutes of Health – the child will constantly be in motion, dash around touching or playing with everything in sight, talk nonstop, fidget and squirm in their seats, have trouble sitting during mealtimes or in school.
8% His running was repetitive, almost ritualistic, and without purpose.
< My Thoughts > The key words that we hear mom saying are “repetitive, ritualistic and without purpose.”
When the child is ‘driven’…’acting pervasively’…or, otherwise insistent on doing that behavior which seems odd or unusual, in that particular setting.
8% If anyone tried to stop him he would respond with a tantrum so extreme that nothing we said or did would get through to him.
< My Thoughts > “Can’t stop repetitive behavior.”
Restrictive repetitive behavior (RRB) are an expression of autism, but not unique to just autism. According to Harrod (2013), most children with autism will exhibit RRB’s at some point, but not all will act pervasively. In typical development, RRB’s will lead to mastery of a skill or task. In children with autism there are seen two kinds of RRB’s; ‘lower order behaviors’ and ‘higher order behaviors.’
‘Lower order behaviors’ are characterized by repetitive manipulation of objects, like spinning a wheel or lining up cars. While ‘higher order behaviors’ are more ritualistic in nature where the child will only walk a certain way across the room, for example.
My son’s bedtime ritual is somewhere in between. It’s his ritual but I have to do it. Smiles. The bed gets turned down; the floor lamp gets turned-on then turned-off. Then he get in bed (a certain way), then the ceiling light and fan get turned off twice and turned back on. The TV is left on, but turned down and he has certain books he takes to bed with him, too. Of course, if he’s not sleepy, the whole ritual is repeated over and over, or until he is… or, one of us passes out. Smiles.
8% He would charge across the room, bounce himself off the wall to gain momentum, and race back again – droning continuously… sometimes in a happy tone, sometime anxious.
< My Thoughts > “…sometimes in a happy tone, sometime anxious.”
Children with autism, when over stimulated through brain synapse, sensory overload, or whatever is playing out in their head…can react in a manner which looks like a tantrum or an episode of some kind. The causes of this can be either from a sense of sadness and/or anger…or a sense of happiness and jubilation.
When someone reported that Sonny was hitting his head with a clenched fist…we would ask – “Is it happy hitting or mad hitting?” Often times he would be smiling while severely clubbing himself on the head.
Either way, we cue him with, “Hand down,” and try to distract him without getting in the way of his fist. We have developed very good reflexes, as a result. We still, after all these years…try to figure out what could have brought it on. Of course, we cannot see inside his head…where it not doubt had some kind or disturbance.
Sometimes the behavior is a result of an earlier insult. For instance, he can’t find something he’s looking for… or, a scene on TV was over before he was ready for it to be. Smiles.
8% He had no sense of danger. …he knew how to use kitchen drawers as ladders if he wanted to climb up to sit on the stove.
< My Thoughts > “He had no sense of danger.”
Sicile-Kira (2014), in her paragraph on ‘Safety’ explains that “most children with ASD have no notion of safety. This is an area often overlooked yet vitally important, and can range from not understanding the dangers of traffic or fire to not understanding the possibility of personal danger from strangers or aggressive individuals.”
8% Mealtimes were another challenge. Dale was rarely hungry and in order to get him to eat at all, I tried to arrange the food in the shape of cars or Mickey Mouse or serve it on novelty plates.
< My Thoughts > “Dale was rarely hungry…”
There are all kinds of special diets for special kids. Maybe the child doesn’t like the look, feel, smell, taste of the food. It could mean he/she has sensory issues with food. Then there are some medications which can affect the appetite, any food can distress them.
The study by Sharp & Jaquess (2009) shows that there can be many different causes for ‘food aversion.’ When designing treatments for pediatric feeding disorders, particularly among children with autism, they try to identify the cause. They look at whether the child has poor oral motor skills (chewing and moving the food around in the mouth).
Or, they try to discover if the child demonstrates highly selective eating patterns, such as type and texture of food, as well as food color, shape, and presentation. In this study, they even looked at whether or not this was an ‘escape’ behavior and not really about the food. For children in the study who were only drinking PediaSure or eating only pureed baby food, they designed a transition program to slowly introduce solid foods.
When Sonny was 7 years old he only drank milk from a bottle. Baby food, when accepted, was sucked into his mouth from the spoon. The school therapist showed us (when we had him for visits, prior to becoming his foster parents) how to take him from this point to that of chewing a bagel with peanut butter on it.
This transition to solid food took us a little over one year.
Sometimes feeding him this way worked, but even then, more food would end up being thrown all over the floor.
9% …rejecting everything except sausages, French fries, chicken nuggets and pizza.
< My Thoughts > “pizza.”
Therapists used to say that pizza is okay because you can pile on nutritious foods and cover them with melted cheese. But, I’m not certain if that is still the prevalent thought. Certain diets may call for gluten-free crust and dairy-free cheese.
One parent shared with me that his son would not eat homemade pizza, only Joe’s Pizza from a neighborhood take-out. He said he often ordered pizza to be delivered in the middle of the night because his young son woke up screaming for pizza. That became their nighttime ritual.
9% If I introduced so much as a single pea or slice of carrot, he would protest by vomiting at will.
< My Thoughts > … “he would protest by vomiting at will.”
Sonny has vomited (not merely spit out) pills that didn’t agree with him. How did he know? And, if you try to get a vegetable covered with ketchup or p-nut butter past him… when you least expect it… out it comes… whole and unadulterated!
8% He would not let us hold his hand and would throw himself on the ground in fury if we tried…
9% My mum got him to drink liquid when he learned to like milky tea without sugar, and to this day Dale has never refused the offer of a cup of tea.
10% Dale would want to stay in the park for over four hours and even then would not want the visit to end. The whole experience had to be entirely on his terms. While there he had a set routine of rituals that had to be adhered to in order to prevent tantrums occurring.
His disapproval would be registered with a tantrum of mammoth proportions.
I had to carry him while he screamed, punched continually, kicked my shins, scraped his fingernails down my face, or tried to bite me to demonstrate the full force of his rage.
Jamie (my husband), I knew, had still been clinging to the belief that Dale’s behavior was the result of his premature birth and that things would improve over time.
But somewhere deep within me, the feeling of doom about the future was steadily becoming stronger.
10% Through dogged persistence, my mother had got his first word…at twenty-six months of age.
“Tree, Dale, tree,” and on this day she was utterly stunned to hear in reply a wonderful voice she had never heard before.
“Tree,” Dale shouted back with considerable enthusiasm. “Tree!”
11% I beamed at my mother, who observed, “If we can get one word, we can get two.” Dale seemed delighted with his new word, but the enormity of what would be involved in teaching him more soon became apparent.
12% In addition to those difficulties, Dale was still not toilet-trained.
< My Thoughts > “…still not toilet-trained.”
Toilet training brings on a whole new set of anxieties for parent and child. Flushing the toilet is very scary for some toddlers. Today’s diapers keep wetness off the child’s skin… so, you have to either use old fashion cloth diapers or put the child in underwear. For girls, pretty ones they won’t want to get wet. And for boys, superhero or those they like… for the same reason. It is easier to teach boys to sit for urination, even though ‘shooting down the Cherrios target’ is much more fun. Another tip is to increase fluids for a day or two before you start training. Also, interactive books with favorite characters can help to pass the sitting time. Also, interactive books with favorite characters can help to pass the sitting time. Sonny likes Sesame Street’s Elmo’s Play-a-Song, Potty Time Songs and Potty Time with Elmo.
Abstract from Cocchiola, et al (2012) –
“We describe an intervention program to toilet train 5 children with autism or developmental delays who demonstrated no prior success in the home or school setting. Intervention focused on (a) removal of diapers during school hours, (b) scheduled time intervals for bathroom visits, (c) a maximum of 3 min sitting on the toilet, (d) reinforcers delivered immediately contingent on urination in the toilet, and (e) gradually increased time intervals between bathroom visits as each participant met mastery during the preceding, shorter time interval. The program was effective across all 5 cases in a community-based elementary school.”
12% … (I heard) Dale’s cries of joy and laughter, smash, laugh, smash, and a louder laugh.
I hurried to find him standing barefoot in a sea of broken wine glasses.
I froze as he lifted up the next glass.
< My Thoughts > “… Dale’s cries of joy and laughter, smash, laugh, smash, and a louder laugh.”
From the studies I have read, and from my personal experience in the home and in the classroom, destructive behavior is very difficult to extinguish. Overall, behavior modification can include this, of course. But when you try isolating this behavior by offering reinforcers, such as time on the iPad, or time in front of the TV, then those very reinforcers often become the target. Why? Maybe because the child values them more… so, they get a greater ‘smashing’ high. Just guessing. We have always had a clear plastic shield in front of all our TV’s, for that very reason. The first time Sonny put his fist through our flat screen TV was a very costly lesson. Pain all the way around!
12% …I knew I couldn’t go on like this. Taking a huge deep breath, I composed myself and at last resolved that it was time to get help.
13% Suddenly I could contain my fears no longer and asked the psychologist directly, “Is Dale autistic?”
My words were left hanging in the air for several moments before she replied, “We are thinking along those lines, yes.”
Something inside me died.
“Is that the fancy name for it?” my mum replied. “Never mind, he’s still our Dale and we’ll do whatever it takes to help him.”
…we were shocked to learn there was no provision for children like Dale. Luckily, Dale and two other children would receive help from the head teacher at the Pre School Language Unit of a local primary school…for one and a quarter hours on Monday morning.
14% This is where I embarked on a major battle to increase the amount of help Dale would receive. It was infuriating that these children needed the most input and experience with their peers but were getting the least.
We asked psychologist Mary Smith to refer Dale to Yorkhill Hospital in Glasgow, in order to get a recognized diagnosis from a proper authority which would strengthen his case.
17% Attending to Dale’s needs became even more of a battle as his rituals and obsessions grew increasingly rigid and unpredictable.
I started having panic attacks and would be awake all night…desperately anxious about what the next day would bring.
< My Thoughts > What are Panic Attacks?
“Something feels dangerously wrong. A few minutes ago, something felt off, but you weren't sure what it was. Then it got worse. You started to feel weak. Your heartbeat started to race. Suddenly it starts to cascade out of control. You feel lightheaded - maybe a little dizzy - and your brain doesn't seem like it's working correctly. Your legs may feel weak, you may have a bit of chest pain - you can't seem to get a full breath.”
“It starts to get worse. Now you're certain something's wrong. The symptoms are getting worse and you're barely able to hold it together. This is the end, you're sure of it. You might die - you know it. You have an instant feeling of pure dread, and then it sort of fades away.”
“You're left wondering what happened. You're left believing that you may have just had a heart attack, or a brain aneurism, or some sort of terrible cancer. But what you really had was a panic attack - an anxiety attack so severe that it caused a combination of intense physical and emotional symptoms.” Retrieved from: http://www.calmclinic.com/panic/attacks, on May 2015
3% …I was suffering from stress and exhaustion… During the period of uncertainty and anxiety, the best advice to alleviate this condition was to try and reduce stress as much as possible, and to this end Jamie suggested it would be good to get me away.
< My Thoughts > “I was suffering from stress and exhaustion… ”
Johnson (2013) offers the maxim…“Parents are only as happy as their unhappiest child.”
Johnson found that the authors she read tended to conclude that the degree to which the parents suffer may be due to their feelings about “(a) concern over the permanency of the condition; (b) poor acceptance of autistic behaviors by society and, often, by other family members; and (c) the very low levels of social support received by parents.” She also found that mothers reported stress more than fathers. Also, parents state that their child rarely does things “that make me feel good.”
3% Jamie called his cousin David who lived with his wife, Isobel, in the large Scottish village of Auchterarder…
As soon as we arrived, Dale ran straight out to the back garden and as usual began what we came to call his Chariots of Fire relentless running routine.
< My Thoughts > “ his Chariots of Fire relentless running routine.”
Or, as my grandmother would say… “Running to Hell and back.” I’m not sure what that means… but it seems appropriate here.
3% Locked into this ritual, he would give a droning noise as he ran and would do this for ages if you let him. We got this name from the eighties film of the same name about Olympic run
Isobel attempted to divert Dale’s attention to a small soccer ball, but he resented the intrusion and continued with his run.
Undeterred, she told him, “This is one of the balls the dogs play with. Shall we go and get them?” Dale ignored her completely.
David nonetheless went into the house and liberated their two Scottie dogs, Barney, totally black, and Dougal, completely white, who came scampering out in full play mode, anxious for someone to throw their ball for them.
To Jamie’s and my surprise, Dale’s face instantly lit up, and David and Isobel proceeded to show him the dogs’ favorite game.
< My Thoughts > “Dale’s face instantly lit up…”
Sometime with our kiddos, the novelty of just the right thing at just the right time can be a hit! Can one sustain that interest and engagement is the question. My motto is to just keep trying by introducing it again at a different time… the interest may return, but don’t insist if it doesn’t… just give it again another time.
3% Dale seemed enchanted as he threw the ball, which Dougal promptly returned to him, dropping it at his feet.
Dale kept going, continually repeating the command Isobel had taught him. “Fetch!” Jamie and I stood by in amazement as for the very first time, our son interacted and played happily and naturally with another living being, something we’d never witnessed before.
“I can’t believe what I’m seeing,” Jamie told David. “If we were visiting anyone else, he’d be tuned in to a video by now.”
“Ever thought of getting a dog yourselves?” David asked innocently. “We need a dog like we need a hole in our heads,” was Jamie’s subtle rejoinder.
(A couple of days later, and several trips to the Library…) I didn’t hear Jamie come home…I quickly tried to hide the book under a cushion…” What are you up to?” he inquired suspiciously.
Conceding I’d been keeping a secret, I showed Jamie the book cover with a golden retriever on it. Then as his jaw dropped, I tried to plead my case.
Jamie’s response was tactful, sensitive, and to the point: “Are you nuts?”
A skeptical husband, however, cannot stand in the way of a wife on a mission, and the day inevitable came when we went to see the pups… (a vet told me about)…
We tried to explain the outing to Dale, but he clearly didn’t understand.
As Val showed us into her living room, Dale was quiet and withdrawn. He remained this way despite the deafening noise of dogs barking in the back room.
Val (left the room and) reappeared with two of the cutest bundles of fur under each arm.
When she set the pups down to run around, I was enchanted,
…but Dale ignored them completely. Worse, he started to rock and moan as if it were all too much for him.
Picking up on this, Jamie told me quietly, “This isn’t going to work, Nuala.”
Disappointed, but not about to lose hope, I replied, “Let him at least see the pups for a while.”
“He is seconds away from a tantrum” hissed Jamie.
Then to our dismay, Dale suddenly pointed to the bookshelf beside the television, exclaimed with great excitement, “Thomas!”
5% (With the video on…) he promptly kicked off his shoes, and settled down to watch from the big armchair in front of the TV, now totally content.
Even though Dale only had eyes for Thomas, I wasn’t yet ready to give up. I knelt down and began to play with one of the pups to try to catch Dale’s attention but to no avail.
“Maybe when the video’s finished…” I added hopefully.
But Jamie was emphatic. “He doesn’t want this, Nuala.”
Heavily disappointed, I had to concede. Then one of the pups wandered over to Dale’s chair and tried valiantly to clamber up onto it.
…rewarded with a helpful push…the pup…snuggled in beside Dale.
“Look at that,” I told Jamie… Dale was still engrossed the video but he was now also gently stroking the pup’s back – though he hadn’t so much as glanced at it.
< My Thoughts > “Dale was still engrossed the video but he was now also gently stroking the pup’s back – though he hadn’t so much as glanced at it.”
One of my students with Asperger’s confided in me that teachers think he is being rude or disrespectful because he is often engaged in two or three activities at one. “I pay attention” he said. “I don’t have to be 'looking' to know what’s going on.” I also hear the lights buzzing, the cars driving by outside, and the kids running down the hallway.” Often their filtering systems just don’t work, or they really don’t have any at all.
5% “Have you got a new friend there, Dale?” This little fellow needs a name. Can you think of a name for him, Dale?”
Dale simply leaned around her to see the TV, and at that very moment his favorite engine appeared on the screen. “Henry, Henry,” Dale cried and excitedly pointed with delight to the screen.
“Henry?” repeated Jamie, before muttering, “The poor thing’s doomed from the start.”
Val lifted up a floppy ear and wrote a big H in black felt tip pen, much to the delight of Dale, who found this hilarious.
While Jamie wrote out the check, I asked Val if she’d be prepared to take Henry back if his welfare started to suffer at Dale’s hands, and she confirmed she would.
We needed time to prepare Dale for this big change in his life. Val was happy to look after Henry for another two weeks while we set about trying to help Dale understand what was about to happen.
Jamie made a very professional countdown calendar, showing a picture of a specific dog item for each day, and Dale would tick off the appropriate item on a daily basis to give him a concept of time going by.
< My Thoughts > “Dale would tick off the appropriate item on a daily basis to give him a concept of time going by.”
Having a visual checklist and/or calendar to help prepare for an upcoming event is very useful to parents and children alike. There are calendars an organizational apps available on iPad.
6% We used a toy cuddly puppy on whose ear I had written a similar “H” to the puppy’s to reinforce our efforts…
…I could tell by the interest in his face that he seemed to be taking some of it in. How much or little I couldn’t know, but it was always worth a try.
< My Thoughts > The parents used very good strategies here to reinforce the upcoming event. Today’s technology would allow a phone photo of Dale and Henry at Val’s house to use as well.
6% We arrived at Val’s and as before, Dale went through the door without saying a word, but he was at least in a calm, good mood. He stayed close by my side as Val left us in the lounge to go and get young Henry.
When she came back with our pup…Val told me, “You’d better take him, Nuala, he’s a big lump now,” and passed Henry over to me.
…his two big front paws rested on my shoulder, with Dale contentedly stroking his back, I hugged him to me, nestling his soft downy coat and them placing a kiss on the top of his head.
What neither of us knew then was that this beautiful little pup was to change all of our lives forever.
17% (Meanwhile, in desperation after the panic attacks)…I wrote to…the head teacher of the Struan House School, who helped arrange an appointment for us to see…a professor of child psychology. We spent a full morning with her…
…Finally, after appointments with thirteen different professionals over a sixteen-month period, and Dale aged three years and eleven months, a diagnosis was made.
Dale had classical autism. At last we were to be allowed the dignity of acknowledging our son’s disability for what it actually was.
< My Thoughts > “Dale aged three years and eleven months, a diagnosis was made.” “Dale had classical autism. At last we were to be allowed the dignity of acknowledging our son’s disability for what it actually was.”
Sicile- Kira (2014), “…it is important that you have a diagnosis as early as possible, in order to access services.” “Research shows that our brains have neuroplasticity, which means that they continue to reorganize themselves by forming new neural connections throughout life.” “Many children with autism can improve and even recover from any challenges that keep them from living productive and happy loves. We are also learning to identify the strength that many on the autism spectrum have, and how to help each individual build on his or her talents.”
18% (The night we brought Henry home) Jamie and I had to go out for dinner with friends who were leaving the area, and so Mum and Dad came round to watch Dale and Henry.
(Upon returning home, after our evening out) I noticed something different. The fleecy lining that I had bought for (Henry’s) bed had been thrown across the room and Henry was now lying on Dale’s blanket with patterned trains on it.
19% …when Mum had tried to settle Henry down for the night…Dale had proceeded to lift Henry and wrap him in the blanket, saying, “Bedtime, Henry.” Mum and Dad had been pleasantly shocked by this unexpected communication and of course I was thrilled.
We woke up the next morning to two things: the surprise that there was no Dale in the middle of our bed and a lot of noise from him downstairs.
“What’s all the commotion?” asked Jamie… “That’s not commotion, its communication. Listen to all the language he’s using.”
…Dale was saying, in an uneven, sing-song style, “Henry puppy, Duck, puppy…Give it to Dale.” All of this was punctuated with shrieks of laughter and little yelps from Henry as the two of them engaged in boisterous play together.
< My Thoughts > “Dale had proceeded to lift Henry and wrap him in the blanket, saying, “Bedtime, Henry.”
Remember the study discussed earlier? The results showed that the pet-child relationship was more qualitative (quality of pro-social behavior… ‘offering to share’ and ‘offering comfort’) than quantitative (number of times this behavior occurred).
19% We’d never heard our son play so verbally or joyfully before with anyone either human or animal. When we finally went downstairs, we didn’t care about the puddles and mess on the floor…
…thankfully (Henry) just took everything in his stride. We had all bonded already with this gorgeous little bundle of joy, who had rapidly become a major part of the family.
(Dale) had suddenly been transformed from a lost and lonely child into a happy little boy, who at last had a friend to give him a sense of purpose.
< My Thoughts > There is not too much in the literature specific to using animals as an intervention to benefit children with autism. Sonny was very afraid of dogs, in the beginning, especially yappy miniature breeds. They set him off the same way a crying baby does. But, he loved our Calico cat and both our Golden Retriever and Yellow Lab.
The lab was a service dog, which my husband trained, and Sonny soon learned to work that to his advantage. The lab was very cooperative and always seemed to know when Sonny wanted either the cupboard or the refrigerator opened… so Sonny could treat both himself and the dog to whatever was inside. The cat served no real purpose for Sonny except that she was soft to pet and sometimes ran around the house jumping on furniture the same way he did… kindred spirits!
19% Our home had come to life in a sense we had not known before Henry crossed the threshold and began to work his special kind of magic.
< My Thoughts > “Henry crossed the threshold and began to work his special kind of magic.”
While pets are often used, sometimes inadvertently, to add solace and comfort to a setting… animals in the home, hamsters and rabbits in the classroom, real studies are few although much is written for the layman.
Grandgeorge and her colleagues (2012), did a study that “evaluated the association between the presence or the arrival of pets in families with an individual with autism and the changes in his or her prosocial behaviors.”
This was a rather large study of 260 individuals with autism who had the ability to engage in pro-social behavior. Two groups were assessed (through a parent questionnaire) about the presence or absence of pets in the household and whether or not new pro-social behavior occurred in the child with autism.
In one group the children had been born into a household with a pet. In the other group, called the ‘pet arrival’ group, 5-year-old children were given a new pet. The results showed that the pet-child relationship was more qualitative (quality of pro-social behavior… ‘offering to share’ and ‘offering comfort’) than quantitative (number of times this behavior occurred). The conclusion was that more related studies were needed to better understand how the ‘pet-child’ relationship might improve pro-social behavior in the ASD child.
19% We wanted Dale to learn how to take care of his dog and ensured he was fully involved with all aspects of looking after Henry. We hoped that in addition to the benefits this would have for Henry, Dale might also learn some things about looking after himself in the process.
Then, the ‘motivation’ to act can be encouraged or discouraged by the way the act is received. “For every action, there is a reaction.” If the response to the action fills a need, then we are most apt to repeat that action. If the response to the action doesn’t fill a need for us then we quickly abandon it.
Then, for the child with autism, there is another component. If the action is done with or for another, the child can be an observer of the action/reaction… Therefore, they are not directly involved. In other words, the child only has ‘one foot’ into the world in which the event (learning a skill or behavior) is occurring.
Then, of course, when Dale washed the dog… then washed himself… he was ‘generalizing’ the skill. He was able to take the learned skill (of washing the dog) and apply it in a different way (to washing himself). So, this was less a ‘mimicking’ event and more of a social event of caring for his pal, Henry. This is my interpretation of why Henry played such an important role in Dale’s learning self-help skills.
21% A further obstacle was that he would never get a bath until his trains had been placed round its perimeter, one at a time, in the precise order he wanted.
Dear Henry came to the rescue again. I simply plopped him in the bath…and amazingly Dale followed.
Dale’s aversion to having his hair brushed was reduced by adopting the same approach. I would take a brush to Henry…
21% We brushed Henry’s teeth…and this gave him independence in caring for his own teeth.
22% …dog stories and videos helped to lessen his need for Thomas, and his growing love of all things canine eventually led to a significant expansion of his social world…
< My Thoughts > “helped to lessen his need for Thomas”
This would also be an opportunity to give Dale an option from watching “Thomas the Train” videos and expand his world. Mom could get/make videos of dog shows, dog training, or otherwise ‘dog’ related videos to switch off with the beloved Thomas shows. For very young children, parent can say, “Let’s watch 3 minutes of this new video I bought… before we watch Thomas.” You would have both videos available for the child to see… and set a timer for the 3 minutes. Eventually, you can extend the time and hopefully the child will ask to watch both videos… the favorite and the new one.
22% A whole new world opened up as we visited dog shows and went for regular walks with Henry.
< My Thoughts > “whole new world opened up…”
Dale is now a participant in life, not just an observer. This is the perfect opportunity to work on skills for reading, writing and mathematics. Some ideas would be…
- Locating dog shows online (reading and researching).
- Writing for tickets or accommodations.
- Using math skills to determine when the show starts, how long it lasts, and how much money this adventure is going to cost.
- Prioritizing/sequencing which shows to attend, when and why. This plan could be written as a document on the computer.
22% When people stopped to pet Henry and comment on him, this only served to increase Dale’s interest in his dog, as well as dramatically improve his socialization skills.
…Dale was due to start school in August, although a particular worry remained; at almost six years of age, he was still not fully toilet-trained.
23% One day, after a successful pee from Henry in the garden, followed by his reward, Dale and I went back into the house.
“I need a wee. Don’t want to make the house all dirty and smelly.”
I never put a diaper on Dale again…
< My Thoughts > This enchanting book continues on to include the reader in the drama which tells of Dale’s future and his sister Amy’s brush with death.
End of excerpts from the book
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REFERENCES used in < MyThoughts > are:
Crane, L. (2015). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom; Division of Language & Communication Science, City University London, UK; March 25, 2015.
Grandgeorge, M. (2012). Does Pet Arrival Trigger Prosocial Behaviors in Individuals with Autism?;
Public Library of Science: San Francisco, CA.
Harrop, C. et al. (2013). Restricted & Repetitive behaviors in ASD and Typical Development: Cross-Sectional & Longitudinal Comparisons; PACT Consortium: 14 November 2013; New York
Johnson, J. (2013). Parental Stress in Autism Spectrum Disorders; Autism Research Review International: Fall 2013.
Sharp & Jaquess (2009). Bite Size & Texture Assessments to Prescribe Treatment for Severe Food Selectivity in Autism; Behavioral Interventions 24:157-170.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.
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