I feel like one minute I had a quirky kid, and then the next I officially had a “Special Needs Child.” Suddenly my life was doctor appointments, scheduling specialists, therapy and learning what the heck a 504 Plan was. If you’d have mentioned a 504 to me last month, I’d have thought it was a retirement plan.

Doctor Appointments and Paperwork

It’s been a bit of a whirlwind of doctor appointments and paperwork lately. We have a meeting at school next week to create a 504 plan for our son Keelan. It’s pretty amazing how far things have come for kids in school with special needs. I had never heard of the 504 until a week before Christmas break when Keelan started squeaking, in addition to his usual blinking, shrugging and grimacing tics.

He’s officially diagnosed with primary tic disorder but will most likely be deemed Tourette Syndrome after we finally get to see the neurologist in September. That was the first available appointment! Lucky kid also got OCD & ADHD to round things out, which is common with Tourette’s.

I even got to learn a new word: comorbidity.

Comorbidity is a term used in medicine to describe the presence of two or more chronic diseases or conditions in a patient. This term acknowledges the coexistence of these conditions and the potential impact they may have on each other.

Can’t Ignore It Any Longer

Keelan has had physical and verbal tics since he was four years old. It all started with a little grunt that persisted for several months. Every year I’d bring the tics up during his annual wellness check and the doctor said to ignore them and hope they go away. Last year when I pointed out that they not only were sticking around, but he was also adding to them, she sent me home with an informational pamphlet and more advice to ignore it.

We continued to do that, and some of the tics subsided, but then new ones were added. When the loud repetitive squeaking started, it was hard to ignore. I called the doctor and told them we were NOT ignoring it anymore and I’d like a recommendation for a therapist to help us work through this.

I walked in ready to fight, but this time they took everything more seriously and we actually walked out with a diagnosis and recommendations for therapy and a neurologist.

Then, shortly after the doctor appointment for the tics, he had a hearing checkup, and they also suggested a 504 plan. They recommended Hearing Itinerant Services due to moderate to severe hearing loss in his left ear. That was another new term I got to look up!

Hearing Itinerant Services are educational support services provided to students with hearing impairments. These services are usually offered by qualified professionals who work with students, teachers, and parents to address the specific needs of the student with hearing loss. The itinerant teacher may provide support in various areas such as amplification, speechreading, language development, social skills, and academic accommodations.

The ENT doctor said he probably can’t hear when the teacher verbally gives the class directions or assignments, and most likely won’t ask what was said. Keelan confirmed this and said he usually gets the info from a friend. So, one of the things that can be done is to have the assignments or instructions provided in writing.

Creating an Action Plan

Once we had the diagnosis, it was time to get everything moving and get appointments with therapy, neurology and his school. There was a lot of phone calls, scheduling, and filling out forms. I feel there is a lot of that in our future as well.

It’s crazy how long it takes to get a doctor’s appointment! We start therapy in March but can’t get in to see the neurologist until September. We are on a wait list for a cancellation, so hopefully we can get in sooner.

The therapy we’ll be doing is Comprehensive Behavioral Intervention for Tics (CBIT), which is supposed to be the most effective therapy for learning to control the tics.

CBIT is a specialized therapy designed to help individuals with tic disorders, such as Tourette Syndrome, manage their symptoms. This intervention approach utilizes techniques such as habit reversal training, which involves identifying when tics occur and teaching the individual to engage in a voluntary behavior that is physically incompatible with the tic.

Additionally, CBIT may incorporate relaxation training and social support to address the psychosocial aspects of tic disorders. The ultimate goal of CBIT is to empower individuals to better understand and manage their tics, thereby improving their quality of life.

Creating a 504 Plan

Next in our action plan is to set up the 504 Plan at school. For that I had to submit the paperwork from the ENT doctor and have a form filled out by his doctor. We have a meeting next Friday with his teachers, guidance counselor, and a school psychiatrist to create the 504 Plan.

A 504 plan is a legal document that outlines accommodations and modifications to help students with disabilities participate in school-related activities. The plan is tailored to the specific needs of the student and can include provisions such as extended time for assignments and tests, preferential seating, access to assistive technology, adjusted academic and behavioral expectations, and specialized services like speech therapy or counseling.

The goal of a 504 plan is to ensure that students with disabilities have equal access to education and the opportunity to demonstrate their knowledge and abilities.

The specific things mentioned by the doctor on Keelan’s form were to not penalize for poor handwriting, may need a tablet for some activities, waive time limits on tests, do not punish for interruptions due to tics and to educate classmates on tics.

These are things I didn’t even know were options before now! It’s pretty impressive that they do this in school so that kids of all abilities can have a positive school experience.

That’s all I have for now! I’m looking forward to the meeting next week to set up the 504 Plan and get him squared away for school.