Hayes was four years and nine months old when we got the diagnosis, and he would be starting kindergarten in five months. The recent medical evaluations qualified him as a preschooler with special education needs.
(If this is your first visit to my website, you might be interested in checking out my previous posts, Diagnosis And Death Certificate, Muscular Dystrophy Association, and Four Year Diagnostic Process.)
Child Find First Step
The Fun Fuller Family’s good fortune was that our neighbor Arline was a special education teacher and guided us to Child Find, the early intervention program. Pete and I were most grateful for her help, and we wanted Hayes to be evaluated before the start of school.
Child Find is an integral part of the Individuals with Disabilities Education Act (IDEA) that requires states to identify, locate, and evaluate all children who need early intervention or have special education needs.
Hayes’ Test Answer Cracked Me Up
My only favorite memory of this uncertain time happened during the pre-testing at Child Find before Hayes had been evaluated by the District Diagnostic Center. It was a forty-five-minute meeting with a diagnostician at one of the local elementary schools.
The diagnostician carefully watched Hayes walk, run, jump, climb, sit on the floor, get up, color some pictures, and cut paper.
Then she asked Hayes to complete a series of statements. She said, “Okay, Hayes, when you have a ball, you…and he filled in with “throw it.” And when you have a bell, you…and he replied “ring it.” And when you live in a house…and he said, “fix it.”
Hayes cracked me up with that last response since the last four years of his life were filled with fixer-upper memories, as I wrote about in Fixer Upper NDE and Fixer Upper Part Two.
District Diagnostic Center Second Step
There were two consecutive days of testing to determine Hayes’ special education needs at the District Diagnostic Center with a different diagnostician. I was not permitted to be in the room with him for this part of the evaluation.
I am including the detailed information below in case a parent, family member, friend, guardian, caregiver, or other caring individual might be reading this post. When shared, I believe it could help another family or child going through similar circumstances.
Summary And Conclusions
When you are responsible for a child with a lifelong medical condition and special education needs, a big part of your life becomes trying to understand diagnostic reports. Now, along with the medical diagnosis came the public school diagnosis.
“Present Levels of Performance: Based on test results obtained, the most valid estimate of current ability level for Hayes is considered to be 112. This score was obtained from the Kaufman Composite IQ, and is based on test results from the current evaluation.
- Hayes’ Mental Ability: Estimated from the K-ABC is well within the average to high average ranges. Likewise his measured (preschool) achievement is high average. His mother reports moderately low adaptive behavior overall with relative deficits in fine and gross motor skills. (I remember being concerned about my son’s gross motor skills but not low adaptive behavior or fine motor skills.)
- Communication Evaluation: The results of the present communication evaluation indicate that Hayes is exhibiting a severe articulation dysfunction resulting in poor overall speech intelligibility.
- Auditory Comprehension Skills: Verbal abilities skills and symbolic play skills are age appropriate. Hayes was observed to be easily distracted during the testing session, and he had difficulty sustaining attention to the test items. He refused parts of the oral motor examination.
- An oral motor examination is a procedure that evaluates the movement and function of the oral structures and muscles that are involved in speech and swallowing.
- Audiological Evaluation Results: Audiometric test results are consistent with normal hearing sensitivity for each ear. There is no evidence of middle ear disorder. Hayes is not expected to have difficulty hearing normal conversational level speech.
- Neuromotor Evaluation Results: Results of the neuromotor evaluation indicate that Hayes has fine motor skills and ball skills which fall within normal limits for his age. His balance skills, non-locomotor skills, and locomotor skills are all significantly delayed.
- Hayes exhibited decreased proximal lower extremity muscle strength and decreased range of motion of his ankle dorsiflexors. The decreased ankle dorsiflexion also affects his gait pattern, causing toe walking, some external rotation of the lower extremities and is probably occuring because of hip extensor weakness, related to Hayes’ diagnosis.
He is otherwise healthy. He passed subjective vision screening.“
“Exceptionality Step 3:
Based on evaluation procedures completed, and the Educational Standards for New Mexico Schools, one or more exceptionalities are identified as follows:
Communication Disordered/Articulation: Eligibility must be based on both (1) identified exceptionality and (2) needs requiring services additional to or in place of the regular program, as determined by the IEP Committee.
It is recommended that Hayes receive speech and language services focused on articulation.
Occupational therapy is not recommended at the present time based on current test results. Re-evaluation for monitoring may be necessary.
Mrs. Fuller will provide the District Diagnostic Center (DDC) with a copy of Hayes’ test results in March, which will determine whether or not he has muscular dystrophy.
School personnel and the school nurse need to notify his parents if they see signs of increased weakness.
No audiological recommendations are necessary at this time.” (Signed by the Certified Educational Diagnostician)
What was not included in the Summary And Conclusions were some key factors about the testing at the DDC.
On the first day of testing, I explained to the diagnostician that I suspected Hayes was not feeling that great and hoped that would not impact the test results. Most four-year-olds do not have two days’ worth of patience and a positive attention span. Note her comments above: “He was easily distracted and refused parts of the oral motor examination.”
She also did not include in her report what she said to me in person that Hayes had the Only Child Syndrome.
The Only Child Syndrome
As a parent and writer, whenever I do not know what something is and it impacts someone I care about, I research it. After researching the Only Child Syndrome, I understood why she did not write that assumption in her evaluation.
Here is what I learned from Verywell Mind’s article What is Only Child Syndrome?
The Only Child Theory was proposed in the late 1800s and early 1900s by some influential psychologists. Have you heard of Sigmund Freud, who founded the concept of psychoanalysis?
Mr. Freud believed that only children were prone to sexual identity issues and even suggested that parents with one child adopt a second child if they were unable to conceive again.
Another popular conclusion by an influential psychologist of that era, G. Stanley Hall, went so far as to declare that being an only child is a disease in itself.
Fortunately, in the second half of the 20th Century, research found that parenting styles, birth families, genetics, the home environment, stress, mental health and medical conditions, and life circumstances are more accurate predictions of personality and behavior.
Unfortunately, I have experienced that assumptions often cloud the conclusions of many people in authoritative positions. I believe the diagnostician assumed that Hayes was spoiled, incapable of sharing, unpleasant, and did not get along well with others because he had no siblings.
I think the photos in this post show otherwise.
My suggestion to all public school employees is if you choose to eliminate a statement in the formal written test results, please keep your opinion to yourself. Pete and I were trying to manage incredible stress and sorrow, and this did not help to develop trust in the public school system.
My Summary And Conclusion Of The Diagnostic Process
The diagnostician was wrong about Hayes having the Only Child Syndrome. He wasn’t any of those things written above.
So, according to the public school testing data from Child Find and the District Diagnostic Center, my son, who began speaking at the age of ten months, qualified because of a communication disorder.
She was wrong about him being Communication Disordered/Articulation. The neurologist report described Hayes’ mental status as “The child is awake, alert, talkative and cooperative. His speech is fluent and he is able to follow verbal commands well.” Exactly the opposite of what was written by the District’s Certified Educational Diagnostician.
She understood that Hayes needed to be eligible for special education services as soon as possible since the form of muscular dystrophy he had was still pending. That she got right.
Four Way Intersection
Our daily lives now included four levels: The Fun Fuller Family, The Medical Diagnosis, The Public School Evaluation, and The Grieving Process.
When I was trying to finish the draft of this story at this section, the words would not come so I stopped. Then in the middle of the night, I woke up several times to write down the bits and pieces keeping me awake.
I realized once again that it was the insightful message in Donovan’s song that I wrote about in There Is A Mountain. “First there is a mountain, then there is no mountain, then there is” reminded me that life for everyone is ongoing moments of joy and struggle. Life can be overwhelmingly hard and unfair.
There will always be mountains of your past, present, and future. With all those mountains surrounding my family in real time, I hoped I would have the courage and faith to climb them all.
How are you doing with yours?
The goal I stayed focused on was to make every decision for Hayes based on what was best for him as a whole human being.
Resources
Early Childhood Technical Assistance Center (ecta) https://ectacenter.org
Individuals With Disabilities Education Act (IDEA) https://sites.ed.gov/idea/
Office of Special Education and Rehabilitative Services (OSERS) https://www2.ed.gov/about/offices/list/osers/index.html
Tough Cookie Tip: Loving parents remain the lifelong support for their children with challenging daily lives while professionals come and go. Building mutual trust and respect with new and different educators and support staff that are constantly changing takes time. It also takes willingness to listen to one another and for educators to implement the laws that protect children in the public school system.
Copyright © 2022-2025 Marilyn K Fuller. All Rights Reserved.
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Educators seem to forget what it is like to be a kid. Did like seeing the pictures 🙂
Our experience with the diagnostic process was similar. Ultimately though, the goal was to get the services needed. I find the low lying fruit is often speech and language. Maybe because it’s easier to justify?? Once our child was approved for one service, and receiving therapy services, I also found it was much easier to get the other services. For example, speech therapists often recommend occupational therapy to address the motor issues they see. It’s a long, winding road to get the services your child needs. Great, informative blog post!