Raising an Autistic Child: The Struggles of an Educator

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          Most autistic children end up being influenced during their formative years by two sets of people: the parents who give birth to them and the teachers responsible for their education. Unlike many neuro-typical children, a child diagnosed with autism is often placed in some level of special education and typically will have the same teacher for many years. Since early intervention is the key to obtaining significant gains in cognitive development, education for a child on the autism spectrum normally begins as soon as a diagnosis is received, which generally happens between the ages of 10 to 24 months. During these formative years, both sets of caregivers can become very emotionally invested in the future of the child. When you have two groups trying to plan the best course of action for one child, often there will be differing opinions on what the best means for receiving the greatest results are, which can lead to anger, frustration and a breakdown of communication and cooperation.

Autism is a fairly new concept to older “illnesses”. Less than a half a century ago, children that couldn’t function in society often ended up in insane asylums, mental hospitals, nursing homes or simply hidden away and rarely talked about. They fell into the broad categories of mental retardation, mutism, and insanity. In recent years, doctors and scientist have identified many of these past disorders as Autism Spectrum Disorder (ASD.) ASD is a spectrum of disorders signifying cognitive impairments that cause such symptoms as the inability to filter the intake sensory information, extreme fixation on objects, uncontrollable body movements such as swaying, tapping or flapping of the hands, the slow progression or inability to meet typical childhood milestones, delays with, or the complete lack of, communication skills, inability to function in or comprehend typical social situations, minor to significant learning delays and so on (Mayo Symptoms). At one end of this spectrum, you have children that have significant impairments, and at the other you have children that only have minor deficiencies. According to the Center for Disease Control, as of 2012 there are over 144,000 autistic children under the age of 18. In 2010, the number of autistic children being diagnosed was 1 out of every 110. As of 2014, the rate has increased to 1 out of 68 (CDC). This means that there are significantly more children being raised at home and receiving public education who have been diagnosed with some form of autism than ever before, and the simple fact is, the disorder is so wide and varied, and has so many different facets, parents and teachers both struggle to come up with meaningful ways to impact each child and provide them with quality life skills.

One of the key difficulties for many to understand about autism, is that the disorder can affect multiple parts of the brain, including the areas that involve speech, causing significant delays, while still leaving other areas completely untouched. This means that you often end up with an extremely intelligent child who is unable to communicate reliably, if at all, and only selectively understand communication input. A child with these delays might understand it when you say the word “drink” but wouldn’t understand if you said, “Go to the kitchen and pour me a glass of Pepsi so I can have a drink.” However, this same child might be able to plan complex strategies for unlocking a door, or be able to play specific song on the piano after only hearing it once. They might be able to take a box with thousands of tiny blocks and separate them not only by color, but by shape and size. They might be able to quote hundreds of television shows or songs verbatim, or remember every single statistic for a particular subject. No matter what level of the spectrum these children are on, they all have significant, brilliant moments of intelligence, and that is where most of the issues between educators and caregivers exist.

With neuro-typical children, generally the same teaching strategies apply across the board. Parents and teachers alike are able to apply standard strategies in order to get the best results in general education, behaviors and social interactions. Autism, on the other hand, has so many variables and components, both sides end up struggling to adjust the simplest of strategies to meet the most basic of needs. This can lead to intense disagreements about behavioral plans, intervention strategies, Individual Education Plans, and long-term goals. According to the journal, “Increasing Independence in Autism Spectrum Disorders: A Review of Three Focused Interventions”, most conflicts between caregivers and educators aren’t necessarily over the specific goals for the autistic child, but the steps needed to reach each particular goal (Hume).

The job of a parent is to raise a healthy, happy child to adulthood. The job of an educator is to provide a quality education that leads to independence and success. Most would see these two goals as coinciding and easily paired, but when autism is thrown in the mix, both sides often struggle to find common ground. Parents tend to see their child’s well being reflected in smiling faces, happy chatter and excitement to advance. With autism, many of those cues are nonexistent (Lecavalier). Instead, parents define their autistic child’s well being by the lack of stemming, no aggressive behaviors, lack of screaming and crying, and other tiny clues that might not mean anything to a parent of a normal child. With autism, it is very easy to develop a pattern of compliance in order to insure happiness. Unfortunately, this can lead to difficulties very quickly. One of the main characteristics of autism is inflexibility. A child will learn to do a particular thing in a certain way, and that will often become the ONLY way that they are able to do it. This sounds benign enough, but imagine having a child who will only go to the bathroom if you stand in the door and sing the “Star Spangled Banner” at the top of your lungs. Sure, it might be easy to explain when you are doing it for a four-year-old, but all children grow, so it becomes a bit more troublesome to explain the necessity for such behaviors when you are doing the same for a twenty-year-old. Educators often have to undo learned behaviors in order to teach independence. It can be difficult for parents to understand why an educator can’t just follow the same learned behaviors the parent follows. Parents tend to only see their child right now. An educator has to picture that child in five, ten, fifteen and twenty years and make decisions that will benefit the child over the course of time. This can cause often result in communication breakdown and bad feelings, as parents struggle to cope with the feelings that their child’s needs aren’t being met in specific ways. It can also leave educators frustrated by the parent’s inability to see the long term consequences of specific actions.

The two most frustrating parts of autism are its prevalence and the sheer lack of beneficial information available for raising an autistic child. Unlike “normal” children, you can’t simply develop one tried and true method of imparting knowledge. Generally, if you have six autistic children in a room, you are going to have to have six ways of teaching them the same thing. This is true for both parents and educators, leading to behaviors and outcomes that once would have been inconceivable.

Over the past few years, there have been incredible spikes in the levels of recorded violence toward autistic children by both sets of caregivers. In April, 2014, a paraeducator responsible for providing one on one care for an autistic child was caught on camera choking, pushing and hitting the young boy (KHOU). The same month, a distraught mother who felt she could no longer cope with the increasingly violent episodes of her severely autistic son, who was taller and weighed more than she did, killed herself and her child (Judd). Unfortunately, these are only two examples of incidents that are becoming increasingly common.

At the rate autism is being diagnosed, we can safely assume that more and more children will be affected by this disorder over time, and eventually those children are going to become adults. Without better education for parents, educators and the children affected by autism, we are looking at a very bleak future. Many parents fail to realize that the “bad behaviors” their small, autistic child display now, will eventually turn into very dangerous behaviors as their child grows. Also, as parent’s age and die, we end up with autistic adults who no longer have caregivers who understand, tolerate and know how to deescalate behaviors and compulsions.

The simple truth is, both educators and parents need to recognize and understand that autism is just one part of the child they both have a hand in raising. It in no way detracts from the need to impart structure, discipline and coping skills. If anything, autism only heightens the need for all of those things. Those skills may have to be taught in non-traditional ways, but they are essential for the health and well being of the child and those who care for him or her.

  •  This is just one viewpoint.  This particular essay’s guidelines were to argue ONE side of a particular viewpoint.  I fully realize that there is another side to this particular subject.

Works Cited:

“Caught on Camera: Teacher Aides Abuse Autistic Boy.” KHOU Khou.com. Georgia School District, 23 Apr. 2014. Web. 30 June 2014.

<http://www.khou.com/video/featured-videos/Caught-on-camera-Teacher-aides-abuse-autistic-boy-256396301.html&gt;

CDC. “Autism Rates: Data and Statistics.” Center for Disease Control, 14 June 2014. Web. 7 July 2014.

Hume, Kara, Rachel Loftin, and Johanna Lantz. “Increasing Independence in Autism Spectrum Disorders: A Review of Three Focused Interventions.” Journal of Autism and Developmental Disorders 39.9 (2009): 1329-338. Web. 30 June 2014.

Judd, Amy. “Distraught Mother Kills Herself, and Son with Severe Autism.” Global News. Global News, 25 Apr. 2014. Web. 30 June 2014.

<http://globalnews.ca/news/1290526/distraught-mother-kills-herself-and-son-with severe- autism/>.

Lecavalier, L., S. Leone, and J. Wiltz. “The Impact of Behaviour Problems on Caregiver Stress in Young People with Autism Spectrum Disorders.” Journal of Intellectual Disability Research 50.3 (2006): 172-83. Web. 30 June 2014.

<http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2788.2005.00732.x/full&gt;

Mayo Clinic Staff. “Autism Spectrum Disorder.” Mayo Clinic. Mayo Clinic, Apr. 2014. Web. 7 July 2014.

 

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Remember our children…

Remember our children...

On April 1, 2014, please use this graphic and spread it as far and as wide as you can. Post it to your wall, use it as your avatar, post it to your friends’ walls and group and pages, tweet it, pin it, do whatever you can think of so that people will remember the children who have died after an elopement.

Shared by Sheila Medlam, who honors her son, Mason Medlam’s, memory.

https://www.facebook.com/events/593656577387389/594936667259380/?notif_t=event_mall_comment

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The Witch’s Wand by Sheila R Medlam

The Witch's Wand by Sheila R Medlam

The land of Arias has always been filled with peace and prosperity until the day the black sword of Volor shatters the land, bringing with it devastation, poverty, war and famine. Now, after twenty years of hopelessness, the lost daughter of Arias’ King and Queen has returned and with her the chance of freedom. The only problem is, she’s only eleven and has no idea how to save the world.

Nora and her companions seek to find their only hope of salvation, the prophesied Witch’s Wand. But fulfilling a prophecy isn’t easy, especially when the people you have to learn to trust are your enemies and magic doesn’t seem to work the way it should around you.

http://www.lulu.com/shop/sheila-r-medlam/the-witchs-wand/hardcover/product-21535998.html?fb_action_ids=767514079925789&fb_action_types=og.likes&fb_source=other_multiline&action_object_map={%22767514079925789%22%3A1527463400813477}&action_type_map={%22767514079925789%22%3A%22og.likes%22}&action_ref_map=[]

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Let’s help Ian win an adaptive bike!

Let's help Ian win an adaptive bike!

Every little boy deserves to have a bike. Let’s help Ian win a super-cool, adaptive bike so he can experience one of the best things a boy can learn how to do! We need your help and your votes! Pass this on.

Ian is one of the most awesome kids in the world. He is funny, silly and too cute for words. He also has autism. This bike could make a big difference to this particular kid! It would be great to see something inspiring go viral for once. Help make it happen.

https://www.friendshipcircle.org/bikes/2014/03/ian-4/

Help save this boy’s life…Re-post and share

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Peter Johnson Jr. reported this morning on a harrowing story pitting the family of a seven-year-old Virginia boy against a drug company. Josh Hardy was stricken with an infection called an adenovirus after undergoing a bone marrow transplant in January.

 

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Josh has been fighting and winning his battle against cancer, along with heart and kidney issues, since he was less than a year old. Now, his mother, Aimee Hardy, says he will die if the curable virus is not treated soon.

Doctors believe the adenovirus can be cured with a drug named Brincidofovir, which is in the trial stage and has not been approved by the FDA. Doctors say the drug has been used successfully on kids with Josh’s infection.

Aimee says the drug maker, Chimerix, has so far refused their urgent pleas to give doctors the drug on “compassionate use” grounds. Kenneth Moch, the company’s president and CEO, said Friday that the company cannot approve “compassionate use” of the drug right now because it is in phase-three of the clinical development process.

“We understand this great need.That’s what drives us to focus on getting it available. It creates these really difficult complex situations where the need to pursue the formal clinical development under the FDA process takes precedent over other needs. As we progressed to larger and more complex safety trials, we made the decision two years ago to stop the program and focus resources on earning FDA approval,” said Moch, who added that his company is “acutely aware of the situation faced by this patient.”

Fox and Friends pointed out this morning that Chimerix has received $72 million in federal funds. Aimee called on the company to change its position, saying “there has got to be some other way to make this available to everyone.”

“To me it’s almost a crime not to make it available to everyone who needs it and I definitely am going to keep fighting for my son until they give it,” said Hardy.

Johnson said he was in contact with Moch over the weekend, asking him whether it might change his mind if he were to visit Josh at the Memphis ICU. Moch maintained that a visit would not change his mind, Johnson explained.

Hardy detailed that her son is very frail right now and has trouble staying awake because of all the pain medication he’s being given.

“Because of this unwillingness to release this drug, I have to leave him and come talk to you and it infuriates me,” she said.

For more on Josh, you can visit his Caring Bridge page. Hardy asked people to take to Twitter and Facebook and voice their support using #savejosh.

Below is information on how you can contact Chimerix. Watch Johnson’s interview with Hardy above.

Connor Elliott Graham – December 25, 2013

 

Connor Elliott Graham was missing from his bed when his parents checked on him at 7am.Connor Elliott Graham was missing from his bed when his parents checked on him at 7am. With his elephant toy in one hand and his Teenage Mutant Ninja Turtles pyjamas on, little Connor Elliott Graham simply wandered off into the night after Christmas. A 10-hour-search on Thursday by police, the State Emergency Service and hundreds of locals eventually located the four year-old’s body in the Clarence River, just metres from his aunt and uncle’s home on Chatsworth Island, north of Grafton. His parents, Caity and Dave Graham, woke on Boxing Day to find that Connor, who was autistic, was not in his bed. They had put Connor, his baby sister Matilda and baby brother Alex to sleep on Christmas night and checked on them at 3.30am because Connor had woken at 3am the previous night. When they checked again at 7am, the boy was gone.  His aunt, Kim Macfarlane, said the fly screen on his window had been pushed out and his toy elephant was found on the bank of the river close to her home. They searched the back and front yards before running down Chatsworth Road, screaming for help. ”We were out on our front verandah first thing this morning and the family came bolting up the road, just frantic, running in and out of every house asking if we’d seen a little redhead boy,” neighbour Robynne McKerracher said. The community of about 150 immediately mustered boats, cars and torches to search the cane fields and swampy rivers that surround the area. The PolAir and Westpac helicopters joined the search, along with the dog squad, Royal Life Saving volunteers and 29 SES members. A photo of the red-haired boy was shared thousands of times on Facebook, and Ms Macfarlane pleaded for help to find her ”beautiful nephew”. ”We are beside ourselves with worry,” she posted. However, just before 5pm, the family’s worst fears were realised when Connor’s body was found in the water. Inspector Brendan Gorman from Coffs/Clarence Local Area Command said: ”We believe the child left the premises of his own volition.”
 

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Connor Elliott Graham – December 25, 2013

Connor Elliott Graham - December 25, 2013

With his elephant toy in one hand and his Teenage Mutant Ninja Turtles pyjamas on, little Connor Elliott Graham simply wandered off into the night after Christmas.

A 10-hour-search on Thursday by police, the State Emergency Service and hundreds of locals eventually located the four year-old’s body in the Clarence River, just metres from his aunt and uncle’s home on Chatsworth Island, north of Grafton.

His parents, Caity and Dave Graham, woke on Boxing Day to find that Connor, who was autistic, was not in his bed.

They had put Connor, his baby sister Matilda and baby brother Alex to sleep on Christmas night and checked on them at 3.30am because Connor had woken at 3am the previous night.
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When they checked again at 7am, the boy was gone.

His aunt, Kim Macfarlane, said the fly screen on his window had been pushed out and his toy elephant was found on the bank of the river close to her home. They searched the back and front yards before running down Chatsworth Road, screaming for help.

”We were out on our front verandah first thing this morning and the family came bolting up the road, just frantic, running in and out of every house asking if we’d seen a little redhead boy,” neighbour Robynne McKerracher said.

The community of about 150 immediately mustered boats, cars and torches to search the cane fields and swampy rivers that surround the area.

The PolAir and Westpac helicopters joined the search, along with the dog squad, Royal Life Saving volunteers and 29 SES members.

A photo of the red-haired boy was shared thousands of times on Facebook, and Ms Macfarlane pleaded for help to find her ”beautiful nephew”.

”We are beside ourselves with worry,” she posted.

However, just before 5pm, the family’s worst fears were realised when Connor’s body was found in the water.

Inspector Brendan Gorman from Coffs/Clarence Local Area Command said: ”We believe the child left the premises of his own volition.”

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