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Recently, my son who has Alagille syndrome (ALGS) started kindergarten and the germ train has been after us every single week. He is currently post-transplant and immune-suppressed, so it’s been a bit of a struggle for him to fully recover before getting hit with another virus. 

He has missed a lot of school time and I shared our struggles with that in a previous column. I decided before things got too far ahead of me, it was best to try to explore options with the school for what we could potentially do for him. And after seeking advice from fellow ALGS moms and how they have navigated their kids starting school and getting several ideas of different accommodations they request to protect their child, I reached out to the school.

The school has been very easy to work with, which I consider a huge win and blessing. I know some parents can struggle with getting their schools on board or communicating correctly and efficiently. 

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I explained to the school that I know we can’t avoid germs entirely and that it is not realistic for me to think so, however, I felt there were a few things we could do to help him be a little safer. They agreed and decided setting up a 504 plan would be best. I am so glad there are options out there available for those who need to have special accommodations for certain reasons. It can ensure that they are not discriminated against and that they are well taken care of. 

Read about HCP resources for ALGS

I’ve never worked before on a 504 plan, which is designed to assure some accommodations for disabled children while in class, so this is all new to me. The guidance counselor explained that a 504 is a legal document that will follow him throughout his entire life whether it be in school or even in the workplace. We were able to mold together a 504 that worked for us and him and now we just must receive some information from the doctor’s offices to support his diagnosis and accommodations. 

In addition to ALGS, we also have a recent diagnosis of alopecia, so we did make an accommodation for that. What we requested in the 504 was:

  • Frequent handwashing including handwashing before lunch and snacks.
  • Strategic seating in the classroom if a peer appears to be sick. 
  • Phone calls to parents if a child in the classroom goes home sick during the day and what their symptoms were. 
  • Allowance to make up all work missed due to medical appointments and sicknesses. 
  • Allowed to wear a head covering of choice at any time. 

These accommodations help me to feel comfortable and know that he will be taken care of. I know his current teacher is doing this for him without the 504 plans in place, but I want the legality standpoint set up so that if he decides one day, he wants to wear a hat, a substitute or another teacher cannot tell him to remove it. 

We’ve been putting these accommodations for the 504 plans into place for 2 weeks now and so far, so good. He hasn’t missed any time off school due to any new germs or sicknesses and he’s washing his hands frequently throughout the day which is a huge hitter. I would recommend the discussion of a 504 plan to anyone who is in a similar situation with their child because of how beneficial it is for us.