Tuesday, May 2, 2017

In Search of a Special-Needs "Utopia"

© Jersan98115 | Dreamstime.com
If you could pack up and move to a place where your family would have everything it needs to thrive, where would you go?

It's a question I've been trying to answer for myself.

My family currently lives in the Netherlands, and when my husband's work contract ends in 2018, we plan on moving back to the United States, where we're originally from.

The next place we move to we'd like to settle down inpurchase a home, stay for many years, and help form a solid local support system for our son with cerebral palsyso it's important that we make a good decision.

After much discussion and online research, my husband and I have identified a metropolitan area in the U.S. where we'd particularly like to live. For privacy reasons, I won't mention the name, but I will say that we've chosen it because:
  • My husband's field of work is narrow, but in this particular area of the U.S., there are multiple companies that he is interested in possibly working for. If he finds a job in the area but later decides he wants to switch to a different company, there's a decent chance that he'd be able to do so without us having to move. (My work doesn't factor into where we move since as a freelance medical writer/editor, I can work from anywhere with a good internet connection.)
  • There's a children's hospital in the area with a strong neuro department, which would be good for my kiddo, who has epilepsy.
  • It's in a state with one of the better health insurance systems in the country, which would also be good for my kiddo since he needs physical, occupational, and speech and language therapies, and relatively frequent visits to various doctors.
  • It's a highly populated area, which translates to more opportunitiesto make friends, find doctors and therapists that we like, etc.and more options in terms of schools.
Having identified this metropolitan area, I've been researching specific towns that we might want to live in. Living near good schools is a top priority, as is minimizing my husband's commute time.

There's a private special-education school in the area that seems quite good. My hope is that my son wouldn't need it (and that a free public education would more than suffice), but to live within easy driving distance of it, just in case, would be reassuring.

So, I've been looking into towns between the town where that school is located and towns containing businesses where my husband is potentially interested in working, and researching their public elementary schools. In doing so, I've clarified some of my educational priorities for my son, who will enter pre-kindergarten or kindergarten after we move. Specifically, I'd like for him to attend a school that:
  • Has lots of support staff already in placespecial-education teachers, occupational therapists, and speech and language pathologists, at a minimum. Bonus points if there's a physical therapist, adaptive PE teacher, social worker, and/or special-education case manager.
  • Values inclusion. I want him to feel welcome at school, and respected. As I've been researching schools, I've noticed that I'm drawn to the ones that specifically mention inclusion on their websites.
  • Has strict food-allergy policies. My son is allergic to nuts, peanuts, and sesame, and due to communication issues, if he were to accidentally get exposed to one of these foods, he would have a difficult time communicating that he was having an allergic reaction. For my peace of mind, I'd prefer to have him in a nut-free, peanut-free school. In my research, I've been surprised to find that many elementary schools not only allow peanuts but actually serve peanut butter in the cafeteria on a daily basis. The thought of another little kid offering some of their peanut-butter sandwich to my son when an adult isn't looking, or even messily eating a peanut-butter sandwich in his vicinity and then him accidentally ingesting some of it, is quite scary. That's something I'm not willing to risk.
  • Is in a town that is reasonably affordable to live in. This is especially important as I think about my son's future. I'm uncertain what he'll need: Adaptive equipment and/or therapies that won't be covered by our health insurance? A private special education, if the public schools have difficulty meeting his needs? I want to make sure that our house payments are not so high that we can't afford to save for all of the unexpected future expenses.
Happily, I've found a school district that appears to meet all of my criteria. Of course, it's too early to register for a school, or even to visit schools, considering that my husband hasn't yet applied for jobs in the area.

In fact, I feel slightly crazy for having done all of this research on schools already, when it's not even certain that we'll be moving to the area. It's just that there's so much about my son's future that I can't controlWill he talk? Will he be able to live independently?that working on this one thing that I can control, relieves some of my anxiety.

I'm sure that wherever we end up won't actually be utopian. But as long as I have my family with me and access to good health care and a good education for my son (plus a good internet connection ;-) ), it will be "utopian enough" for me.

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