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  • Gina

The Danger of Undetected and Misdiagnosed Needs in Children with Disabilities

Children sitting in classrooms with undetected or misdiagnosed needs are one of the greatest travesties in America’s public school system. A child whose needs go unmet can become increasingly frustrated and eventually lash out at those entrusted to teach them. These misunderstood children become anxious and their fight-or-flight instinct is engaged. For some, most of their time at school is spent scanning their surroundings for threats. In time, these children are incorrectly deemed eligible under the emotionally and behavior disorders category and placed in the “Behavioral Disorder” box. Once this label is attached to them, it is incredibly difficult to undo.

Typically a child with this label will be placed in a school district’s behavior disorder program, a placement for children with a behavioral or emotional disorder. Often times, particularly with older students, it is a self-contained classroom with little to no integration with “typically developing” peers. More times than not, the classroom disciplinary system is one of reward or punishment. Comply and follow directions and you will be rewarded. Act out or defy and you will be punished.

It is not uncommon for a child placed in this program to be prone to increased agitation and acts of physical aggression. When they feel threatened, the amygdala activates their fight-or-flight response and what little control they may have disappears. This is called “Amygdala Hijack.” The child may yell, throw objects, kick, hit, or flee. It is easy to look at this behavior and emphatically claim the child is defiant or difficult. The purpose of the behavior may be deemed as attention-seeking, an attempt to escape, fulfilling a sensory need, or an effort to obtain something tangible, but what if that is not the purpose at all? What if they have been crying out for help, but no one has listened, or worse, they’ve been punished because they’ve been telling you all along they were unable to complete a task the way you’d like?

In many instances, a child who exhibits this type of behavior is subsequently restrained by their teacher or other employee at their school and/or secluded from their peers and other adults. Encroaching on their personal space, physically touching, or speaking to them may exacerbate the incident. It is a no-win situation for the child. It is unlikely to change their “behavior” in the future. In fact, it may make it worse.

Back in the early 2000’s, I was required to be trained to safely restrain students when they became a danger to themselves, their peers, or a professional working in my classroom. My students all qualified for special education and were just beginning their time in public education. They ranged in age from 3 to 6 and had a wide variety of disabilities, from speech and language disorders to autism spectrum disorder, intellectual disability to other health impairment. Restraint was not a practice we had to implement often, but when we did it was intense and draining for both the adult and the child.

The type of restraint we were trained to use in my classroom looked like a sitting hug: the adult wrapped their arms around the front of the child with their arms crossed and lowered both of them to the floor while reassuring the child in a calm voice. Sometimes this escalated the situation and the child would flail and slam their head against the adult’s chest, while other times the deep pressure calmed them just enough for the incident to pass.

Generally speaking, my classroom was set up to significantly reduce the likelihood that a child would lose control. The schedule was predictable with visuals to guide us through our time together. Sensory needs were addressed with specialized seating, weighted vests or lap blankets, noise-reducing headphones, or adult support. Accommodations and modifications were put in place to minimize frustration and set a child up for success. When we encountered a problem, we sat down and identified potential triggers and brainstormed possible solutions as a team. It was a constant work in progress and I viewed each child as an intricate puzzle whose pieces needed to be properly put in place. All-in-all, from a behavioral standpoint, most days my classroom ran quite smoothly.

Sadly, when I became a parent of a child with special needs his experience was much different than that of my students so many years ago. Though he had diagnosed disabilities at the beginning of his kindergarten year (Tourette Syndrome and ADHD), the qualification process for special education in our home state of Iowa was an absolute nightmare. Iowa is the only state in the entire country that is non-categorical, meaning they either find a child eligible or ineligible for special education. In our son’s case, it was blindingly evident to us and the rest of the IEP team that his disabilities adversely impacted his education performance, but after the first round of evaluations, they were unable to figure out how to qualify him for special education services because he tested “too high” academically.

There was one not-so-small problem with this outcome: his performance in the classroom did not reflect his ability. The tics, impulsivity, hyperactivity, OCD tendencies, anxiety, executive function deficits, impaired social functioning, and a blatantly obvious undiagnosed specific learning disability in written expression (Dysgraphia) significantly impeded his ability to function in the classroom.

After a second round of evaluations, they deemed him eligible, but only provided goals in the area of behavior. It was a soul-sucking, disappointing process that yielded no meaningful results or appropriate IEP goals. There was no neat, tidy box he fit into and the fallout from this abhorrent failure to understand his needs has been devastating to him and our entire family.

My son is Twice Exceptional (2E): he is both gifted and disabled. From the get-go, the public education system was stacked against him. An outdated evaluation system, coupled with a lack of knowledge about Tourette Syndrome and the comorbidities that accompany it, prohibited him from ever finding success within the walls of his school.

Because his educational needs were never properly identified, and an appropriate individualized education program was never devised, he now suffers from PTSD due to the repeated use of seclusion and restraint in the public school setting. These incidents all occurred when he was 6 and 7.

The details of those incidents, including the frequency and duration, are not known to us, though Chapter 103, Iowa’s administrative rules on corporal punishment, seclusion, and restraint, requires specific documentation any time these practices are used. While there were days I received a phone call summoning me to the school to pick him up because he could not calm down, I am certain there were other incidents we were not privy to. This was a clear violation of an amendment that had been in effect for 8 years prior to his first incident.

As time has passed, more details have emerged as he has openly discussed some of the incidents with his therapist and our family. I feel tremendous guilt and physically sick to my stomach as I envision my young child being subjected to this trauma. If I, a licensed, experienced special education teacher, unknowingly let this happen to my child, how many other children have have endured or are currently enduring this trauma?

My son still crumbles into a ball of hysteria if we touch the back of his upper arm. He still balks at the idea of going into his room during the day and closing the door. He still becomes increasingly agitated if he feels he is losing control of a situation. Time has not healed all of his invisible wounds. It’s been four years since we removed him from public school and we are still dealing with the fallout of ill-advised practices and a significant misdiagnosis of his needs.

He didn’t need a behavior program. In fact, “In 2004, Tourette syndrome, was specifically added to the OHI category of IDEA because it is commonly misunderstood to be a behavioral or emotional condition rather than a neurological condition. Therefore, including Tourette syndrome in the definition of other health impairment may help clear up the misperception of Tourette syndrome as a behavioral or conduct disorder and prevent misdiagnosis of their needs (71 Fed. Reg. at 46550).”

He did need a team who was willing to dig deeper, listen to the experts, and think outside of the proverbial box. I cannot help but think how life may have been different for him and our family if someone, anyone, would have given pause and asked a simple, yet complex question: “What are we missing?”

I wholeheartedly believe his life would be infinitely different than it is now. For four years, homeschooling has been our only educational option. The impact of the trauma is too severe to even consider a placement in a public or private school. Even the mention of it sends him spiraling out of control. Thankfully I am able to step in and educate him. Many families up against the wall are not.

It is beyond time to move away from lumping behavior into four categories. For many children, like my son, this methodology significantly misses the mark and traumatizes children with disabilities. Behavior is communication. It is a symptom of a larger issue and that issue must be properly identified for a child to be successful in a school setting.

No amount of reward or punishment, seclusion or restraint, will ever remediate the behavior of a child desperately communicating their need for help and support. As we have experienced first-hand, these practices only exacerbated the situation and traumatized a child in the beginning years of elementary school. The impact of that trauma is still evident today and is felt by everyone who lives within the walls of our home. Our lives have been forever changed and our story, like many others, needs to be heard.

You can learn more about the impact of undetected and misdiagnosed needs by reading Exceptionally Unordinary, which is now available for purchase on Amazon.

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