Hello readers, and welcome back to Part 3 of the interview with special needs dad Matt McNeil. In our final session together, Matt shares how his family stays involved with the special needs community. And he talks about his young adult novel, The Strange Tale of Ben Beesley, which was inspired by his children, Waverly and Oliver. (Click here to access Part 1 and Part 2 of the interview series.)

How are you involved in the special needs community?

Other than the faculty and staff at school, we interact primarily with other parents of special needs children.  My wife, Shannon, is something of an unofficial spokesperson for Jill’s House, a respite care facility in McLean, Virginia that was started to help special needs children and their families.  We’ve engaged in some fundraising activity for both Jill’s House and the National MPS Society, but that’s a role we are adjusting to; we weren’t parents who were able to dive right in to fundraising for groups that were doing good things within the special needs community.

What can churches, schools, friends, family, medical community do to better support parents of kids with special needs?

Start by appreciating that there are very real but basic needs.  Parenting can be very isolating and a parenting a special needs child even more so.  Basic stuff, like friendly hellos and invitations go a long way.  What has probably meant the most for us are parents who somehow prepared their healthy kids to meet and play with our kids.  We’ve had experiences where unprepared children recoiled from our children and were clearly concerned or afraid, and others who ran up to our kids to give hugs and present gifts they had been working on.  What a huge difference that makes.  We are fortunate to live by a church that has a very active special needs ministry.  They run everything from weekday camps in the summer to “date night” baby sitting once a month.  The kids are so well taken care of that it is actually easy for us to relax–not easy unless the caregivers display understanding and competence from the moment we drop off our children.  It all starts with recognizing that the need is there.

Tell us about your book.

I always wanted to write a book for my children.  I made several attempts at it before the kids were diagnosed, but it never got anywhere.  After we learned they had Sanfilippo, I started writing as a way to deal with my sadness and The Strange Tale of Ben Beesley was the end result of a year’s worth of scribbling.  It’s a kids’ book, primarily for middle grade readers (9-12), about two flies named Waverly and Oliver who get bitten by venomous spiders and their friend Ben who sets out to save them.  But the book really works on two levels: While it’s first and foremost an action-adventure story for kids, it’s also something of an allegory of a family’s fight with a devastating illness.  Any parent will be able to relate to the deeper themes in the book, but I think it could really resonant the book will really appeal to any parent who has been unable to give their children something they desperately need.  All proceeds from the sale of the book will be donated to the National MPS Society to support Sanfilippo research.

Thank You, Matt!

First, many thanks to this special needs dad for visiting this website and sharing your story. Second, if you would like to order Matt’s book, visit his website www.benbeesleybook.com where you can read an excerpt and reviews, as well as order the book. It would make a great gift for the tweens at you house. Finally, if Matt’s story resonated with you, please leave a comment to encourage Matt and his family. I’ll be sure to pass them along to him!

Part 1
Part 2

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