Thursday, January 24, 2019

2e Life - Above the Grade

My son is gifted and has special needs. He is in elementary school now, and while he is above grade with high marks academically, his behavior is challenging to say the least. When people meet my son, we hear how cute he is, how clever he is, how charming and sweet he is. But wait a while… get to know him…. See his true colors… He acts out. He throws fits. He is socially and emotionally immature. He struggles to make and keep friends. He is lonely. He wants to be funny, but it often backfires. He has a lot going on in that head of his. He has low motor function and struggles with writing.

He is ASYNCHRONOUS! He’s been asynchronous LONG before Covid-19 distance asynchronous learning became a thing. His issues are related to his special needs diagnosis.

When my son was near the end of pre-school we started the IEP Testing process as I wanted to be proactive ahead of his starting kindergarten. I figured if we had the IEP in place it would make a smoother transition from private pre-k to public school. Since then, we have had 3 IEP evaluations with testing. In the first IEP we only knew he had been diagnosed with ADHD. After the 1st round of IEP assessment testing, the assessors determined he did not qualify for an IEP as he was academically advanced. They did grant him a 504 for his ADHD. At the time of the review (5 years and 1 week old), we were told he had a comprehension of an 11-year-old, and he had not even started Kindergarten yet. We were told that he tested with a high IQ score.

There was concern letting him start Kindergarten from us, as he still had not mastered toileting. But we ultimately decided he should go and we would add that into his 504 as an accommodation. When he started kindergarten with that 504 in place, he had a lot of problems in class. Mostly behavior, as he quickly advanced to the top of his class academically in a short amount of time. He basically completed all of Kindergarten required coursework needed to advance to the next grade, in 3 months.

We noticed more issues behavior wise and got a new diagnosis of OCD. In class he struggled with transitions and would lash out. If he did not want to do something, he would throw chairs and scream and pitch a fit. In class he would get stuck in verbal loops repeating himself over and over. If he were at recess and did not want to come in, he would run away. Later we learned that was called “Eloping”. This was a safety issue for him and the others around him. He spent a lot of time in the office during his time in Kindergarten.

I requested a 2nd IEP evaluation. The team did a second round of testing based on the new diagnosis of OCD with Anxiety and again determined he was still academically advanced and did not qualify for an IEP. 

Now he has: ADHD with OCD and Anxiety. 

Over that summer we did more developmental behavior evaluations and testing with pediatric behavior specialist. At the end of all of that we were told he had ADHD, OCD/Anxiety, plus SPD, DCD/Dyspraxia, and Dysgraphia. He would need behavior therapy, OT, and likely some form of medication. 

We transferred him into a new school for 1st grade. After he continued to have behavior issues, we went back to the developmental behavior specialist for further testing. We asked them to test for Autism. After they finished interviewing parents, teachers, and my son in person, the specialist told us he did not meet the criteria for an autism diagnosis and we left with a new diagnosis of ODD, Oppositional Defiance Disorder. 

This diagnosis did not seem to fit and we discovered later they leaned into this new ODD diagnosis after speaking with his teacher. She made a strong case that he was being malicious and was targeting victims. That his behavior issues in and outside of the classroom were calculated and on purpose. The teacher determined he was a predator. Due to this, we were not going to get an IEP, because ODD did not qualify. We were told the school could work with him. They created a behavior modification plan. The way that manifested itself was lots of disciplinary actions. He was not allowed to perform in the winter show. He was not allowed to audition for the Spring musical. He was denied recess. He was sent to the office often, and even had a couple of suspensions. 

At the beginning of 2nd grade, he was again off to a rocky start. He was sent home early on his 1st day for outbursts. Turned out his shoelaces came undone and he asked his new teacher to tie his shoes. She refused. He got upset. She sent him to her “quiet” corner. He continued being upset. She directed the children to ignore him. That did not help at all. Scenes similar to this was a frequent occurrence. He loved it in class when they talked about something of interest to him. He refused to participate when it was time to change the topic. He often just got up and left class, without permission. One time it was so bad, his class was evacuated by his teacher because they were in fear for their safety. He tossed the classroom many times. He would often sit in the principal’s office trying to calm down from a large outburst. He was out of class a lot.


 

He is above grade level academically and below grade level for maturity and behavior. When in 2nd grade, he was reading at middle school level (4th-6th grade equivalent), and he was upper elementary in mathematics. Basically, he is a 2E child in a school district that did not understand or support 2E.
“The term twice exceptional, often abbreviated as 2e, entered educators' lexicons in mid 1990s and refers to gifted children who have some form of disability.[1] These children are considered exceptional both because of their giftedness (e.g., intellectual, creative, perceptual, motor etc.) and because of their special needs (e.g., specific learning disability, neurodevelopmental disability etc.).” -https://en.wikipedia.org/wiki/Twice_exceptional
An IEP would be helpful. But because he kept presenting as academically advanced, and the schools wanted him to have the "least restrictive" learning environment, his school district did not appear to be able to support one for him. We were all working hard as his team, to get him on board with how he should act at school, and around other kids. It is always difficult to see him so lonely.

That same day he was sent home early, I reached out to the district again and requested a 3rd IEP assessment. I told them that I would not accept being told he is “academically advanced and therefore there is no need" anymore. I added to my request that his safety and the safety of those around him needed to be considered as well.

I tried stepping up my game to set up home play dates with kids close to his age. It was difficult since my son was labeled the "weird kid" by his peers. I tried to get him the help and support outside of school, since the district had informed us that he needs additional supports, and that we were to find it, and fund it ourselves. I continued trying to get the district to better support my son IN SCHOOL too through the 504 he did have.

We took my son to his new psychiatrist. She did a DSM-5 review with him. She determined he DID meet the criteria for Autism. She sent a letter to the district team doing the 3rd IEP assessment. The IEP review team also did their assessment in the shadows. In the shadows, they were able to observe the outbursts, the eloping, etc.

By late fall, he was granted an IEP for autism, and was transferred to another new school that was better suited to help him. Now he will have help and support for his deficits and his advancements. What this will look like in the near future is unknown. This is all still new to us and the district. He has now essentially been classified appropriately. He is now being taught as a 2E student. And now that form of teaching has a new name; 2E.

So many conditions/labels were following my son, before we landed on Autistic. These are often referred to as comorbidities. He was never the bad kid. He was the misunderstood kid. My hope is to continue the discussions on how to help/work with other 2E students.

Remember, a 2E student is an asynchronous student. They may have a variety of comorbidities. They can have ADHD and Dyslexia, or OCD with GAD, or Autism and ODD. The combinations are endless. They are gifted and learning disabled. 

2E is not easily identified in students. 2E students can exhibit a wide range of traits; many typical of “gifted” students. Often 2E students have a large gap between their “mental age” and physical age. 


It's important to SUPPORT these 2E students. 2E students thrive on challenges in their interest areas and abilities. 


Playing Chess - 1st grade
Table Manner Practice
Reads all the time

Telling his story ideas with Dav Pilkey
Collecting Eggs
   Learning about chickens, and collecting eggs
 
Many 2E students do best when given work that engages multiple senses and offers opportunities for hands-on learning.
 
Supports can start with a formalized IEP and/or 504 plan. Additionally…
  • Encouragement
  • Flexibility/Big-Picture learning
  • Compensation and accommodations where weaknesses are
  • Draw attention to their gifts more than their weaknesses
  • Interventions should address both the academic and social emotional needs of 2E students.
  • Combination of appropriate levels of challenges programing
Rethinking which student should have supports is a good place to start. 

My son kept getting diagnosis after diagnosis. He was an alphabet soup of diagnosis. He was academically advanced and struggled so hard with behaviors, social engagements, acting his age! Most of the diagnoses were incorrect! 

He can tell you everything you want to know about paleontology, and everything you didn't want to know. He can engage in deep conversations with adults about a multitude of topics. He's knows a little bit about a lot of things. If he makes a statement such as an Octopus has 3 hearts and blue blood; chances are he's correct. Doing a quick search on google has taught me this. 


He reads at a middle school level (6th-8th), he's in upper elementary math, he enjoys pre-school television, he can't tie his shoelaces, has to eat with his fingers, and he's still not fully toilet trained. But with all of that, we had to keep coming back over and over, requesting IEP assessments over and over... and were told no over and over UNTIL we came back to the table with Autism. 

The IEP list of qualifying conditions for special education made it difficult for us to get approval. And while working with the team of helpers, we watched my son slip through the cracks. HIS access to free and appropriate education (FAPE) was not being met. He did have a 504 for his ADHD and his dysgraphia. They could put a fidget in his classroom, and they could provide iPad for adaptive technology for his wringing learning disability. That was all the supports available to us until the 3rd IEP assessment with the new Autism diagnosis. 

We need to do better. 

There are 3 types of ADHD. My son's is Hyperactive and Impulsive Type. 
When people think of impulsivity, they most often think about cognitive impulsivity, which is acting without thinking. The impulsivity of children with AD/HD [ A.D.D. OR ADHD ] is slightly different. These children act before thinking, because they have difficulty waiting or delaying gratification. The impulsivity leads these children to speak out of turn, interrupt others, and engage in what looks like risk-taking behavior. The child may run across the street without looking or climb to the top of very tall trees. Although such behavior is risky, the child is not really a risk-taker but, rather, a child who has great difficulty controlling impulse. Often, the child is surprised to discover that he or she has gotten into a dangerous situation and has no idea of how to get out of it.
They thought he had OCD which presents itself for him, in a manner of roadblocks and getting stuck in a loop. It also came with anxiety as well which (at the time we thought) led to outbursts and tantrums.

Obsessive-compulsive disorder (OCD) is a disorder in which people have recurring, unwanted thoughts, ideas or sensations (obsessions) that make them feel driven to do something repetitively (compulsions). The repetitive behaviors, such as hand washing, checking on things or cleaning, can significantly interfere with a person’s daily activities and social interactions.

His SPD (Sensory Processing Disorder) presents itself with sensitivity to touch, light, and sound. He is a seeker, and often wants the comfort of pressure. He often has a blanket wrapped around tightly. He hates shoes and socks. Loud noises are upsetting. Sounds we hear normally are much more intensified for him. Bright lights hurt.

Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses. A child with sensory processing disorder finds it difficult to process and act upon the information received through their senses via sounds, sights, movement, touch, smell, and taste. It may cause difficulty with gross motor skills, creating a clumsy walking gait or frequent tripping.

His DCD/Dyspraxia is a Developmental Coordination Disorder.
A disorder that is characterized by difficulty in muscle control, which causes problems with movement and coordination, language and speech, and can affect learning. Although not a learning disability, Dyspraxia often exists along with Dyslexia, Dyscalculia or ADHD.
Signs and Symptoms:
  • Exhibits poor balance; may appear clumsy; may frequently stumble
  • Shows difficulty with motor planning
  • Demonstrates inability to coordinate both sides of the body
  • Has poor hand-eye coordination
  • Exhibits weakness in the ability to organize self and belongings
  • Shows possible sensitivity to touch
  • May be distressed by loud noises or constant noises like the ticking of a clock or someone tapping a pencil
  • Irritated by scratchy, rough, tight or heavy clothing
He has Dysgraphia
Dysgraphia is a learning disability that affects writing abilities. It can manifest itself as difficulties with spelling, poor handwriting and trouble putting thoughts on paper. Because writing requires a complex set of motor and information processing skills, saying a student has dysgraphia is not sufficient. A student with disorders in written expression will benefit from specific accommodations in the learning environment, as well as additional practice learning the skills required to be an accomplished writer.  








These are writing sample from my son with DYSGRAPHIA. 

He made this in 1st grade:


and now in 3rd: 


His ODD (Oppositional defiant disorder) diagnosis was wrong. We even went to special ODD therapy and it was highly unsuccessful. Probably because he didn't have this one. This has since been corrected and removed.

Symptoms of ODD generally begin before a child is eight years old. They include irritable mood, argumentative and defiant behavior, aggression, and vindictiveness that last more than six months and cause significant problems at home or school.

    • Having frequent temper tantrums.
    • Arguing a lot with adults.
    • Refusing to do what an adult asks.
    • Always questioning rules and refusing to follow rules.
    • Doing things to annoy or upset others, including adults.
    • Blaming others for the child's own misbehaviors or mistakes.
    • Being easily annoyed by others.
What everyone thought was ADHD, OCD, Anxiety, SPD, DCD/Dyspraxia, Dysgraphia and ODD was actually AUTISM with a handful of comorbidities.

This was difficult to diagnose because of his being academically advanced, ability to look someone in the eye, ability to discuss topics of interest deeply… because he is twice exceptional; 2E. When he was a toddler, we all thought he was a little Einstein. He did not have early interventions, and sadly, was slipping through the cracks. With what we know now about his abilities, we can create a BIP (Behavior Intervention Plan) that addresses his strengths and nourishes them while helping to strengthen his weaknesses.

Updated May 22, 2021

1 comment:

  1. I would love to look over his most current assessment report. Then I could give suggestions.

    ReplyDelete