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When a New School Year Means Considering New Options for Your Child

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Editor's Note

This story has been published with permission from the author’s son.

When you are expecting a child, you dream of all the high points you will experience: holding them for the first time, first words, first steps, first day of school, prom, graduation, college, weddings, the list goes on and on. You never expect there will be a moment when your dream can change. You never expect that these “normal” things may not be your bundle of joy’s “normal.”

When your child is diagnosed with Elhers-Danlos syndrome (EDS), you adjust; when your child is diagnosed with postural tachaycardia syndrome (POTS), you adjust again; when you are then diagnosed with mast cell activation syndrome (MCAS), you feel as though you will never quit adjusting.

Even with all the adjusting, you try to keep a level of normal — some way of keeping them with their peers. You strive to keep the adjustments to a minimum. A brace that can be easily hidden, food substitutions that can be easily made, accommodations with the school that are easily incorporated and won’t cause additional attention. And, for some, it works; it’s enough. For my son, all the accommodations, all the changes just aren’t enough. The district we are in are is wonderful but it is ill-equipped to deal with this type situation. Something more is needed for him to have the best school experience possible to graduate with any self-esteem or confidence. I hate that, but after the year we finished in May, after over 400 missed classes due to health issues, it’s time for a new plan. Clearly.

After much thought, research, debate and prayer, we have made the courageous decision to change him to an online school for his junior year. It’ll be hard. Very hard. A huge adjustment. But a needed one. No more missed days, nurse calls, tutorials, falls down the stairs, etc. The list goes on and on. He will have the opportunity to allow his body to wake on its own, to work in jams and during the time of day he feels most functional, participate in group projects, and allow me to control his learning and progress without being responsible for the actual teaching and lesson planning. Having to work full time to provide for his medical needs, I do not have the financial resources or time to be solely responsible. This is the best of both worlds and hopefully will help him regain some confidence he lost.

I encourage all of you to search the different avenues available to you, allowing you and your student the best opportunity to succeed while caring for your child’s needs. Change and adjustments are hard, but sometimes so worth it.

Happy 2018-2019 school year everyone.

Getty image by MIND_AND_I

Originally published: August 15, 2018
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