Crohn’s Disease and Struggling With Learning Delay

I often look back at my kindergarten years with fondness. There was learning, there was playing, there was naptime. Oh my, how things have changed. These days, kindergarteners get tested, retested, and are structured to the nth degree. My nephew started his first biologic treatment for Crohn’s disease a month prior to starting Kindergarten.

Let that sink in. A few weeks before starting kindergarten or turning six years old, he was starting infusions to stop his Crohn’s disease. There were three sets of infusions that needed to take place before moving to a maintenance dose. He had to miss school for one of the infusions, and again for a scope. Then he had to miss more school because of the school sickies and tonsil removal. It’s tough being on something that suppresses your immune system in general. Getting exposed to new germs daily was a whole new challenge.

His teacher noticed certain things his peers picked up, he did not. It wasn’t for a lack of trying. He was just struggling — to stay awake, focus, take tests. Testing kindergartners feels absurd to me, but I was able to read small books by then and spell. He did not.

Side effects of taking steroids

My nephew has a secondary condition. Along with Crohn’s disease, he has a rare digestive disease called eosinophilic esophagitis (EOE). At the time, the only treatment available for it was steroids. My nephew has been on steroids his entire academic career for both conditions. Steroids, for those who aren’t familiar, steroids can cause rapid mood swings and affect one’s ability to sleep or concentrate. For a little one, that makes things much more complicated.

Although he participated in a pre-kindergarten program and testing was supposedly performed, I feel like they let him slide because he was sick. Similarly in kindergarten, this was happening until the end of year testing was gearing up. That was when his teacher raised a flag to his parents. It’s upsetting because if everyone was in the loop on his learning deficits early on, we would have been on it. This caused a lot of meetings and scrambling to get him to study after school.

Dealing with fatigue

An additional problem after school was his fatigue. This poor kid just wanted a nap. Instead, he is forced to pass a test. It’s not that he isn't learning, he learns at his own pace.

His parents faced making a decision. They could hold him back in kindergarten or push forward and continue studying after school. They chose to move forward. He still struggles.

What I wish we all had known in the beginning is that there is something that should have been done in the beginning. He needed a 504 Accommodations Plan. He had not received one. This plan will become more important as he continues schooling.

What is a 504 plan?

The 504 Accommodations Plan protects those with a recognized disability and requires their physical needs to be met. Things like additional testing time and a bathroom pass are part of the plan. Having this plan in place would have enabled him to have additional assistance with his school work as well. For example, if he missed school because of illness or had to leave early, he would receive time to make up work. Plus, when he missed work it was not reassigned as homework. This did not occur.

None of us asked to make these things happen, because it’s kindergarten.

The Crohn’s & Colitis Foundation has a section on its website dedicated to young Crohn’s patients in school. You can read more about the 504 Accommodations Plan and how to approach school faculty about the child’s condition at school.

Preparations for a child struggling with school

Now we are more prepared. We know where our responsibilities are, and what the school needs to provide. It’s still early on in his first semester of the first grade, but his new teacher seems to be on top of things. Technology has played a key role in helping his teacher communicate with his parents. She texts when he’s complaining about not feeling well, and she communicates about his testing and what to practice.

I’m hopeful now that his treatment seems to be helping, that he will have a better attendance year. And now that he is feeling better and we can recognize when he’s struggling with fatigue that he will retain more information.

If your child struggles with Crohn’s and learning, let us know how you helped aid that situation.