Special needs rambling

"Interviews with mothers revealed the dichotomy and dilemma of grief versus hope. If a mother places an emphasis on hope, friends may accuse her of being in denial. Conversely, if she grieves publicly or openly conveys her concerns, she may shape others' view of her child. In fear of creating a self-fulfilling prophecy for her child's future, parents often remain tight-lipped about the child's diagnosis. In some interviews, mothers shared that they intentionally avoid conversations revealing their daily realities out of fear that their friends would only see the child's disability, rather than their ability."

"Few things feel as threatening to a mother as does something that jeopardizes others' love for and acceptance of her child."

- Amy Fenton Lee, Leading a Special Needs Ministry

I've struggled with my thoughts here on the blog, as some readers have undoubtedly noticed. Do I want pity? No. But, do I want someone to ask every once in awhile how I'm doing or if they can help? Yes. Do I love Henry's quirks? Yes. Do I hate his challenges? Also yes.

I think Amy Fenton Lee's observations finally capture what I've been trying and failing to convey clearly. I don't have the "tight-lipped" problem, because I want people to correctly understand autism, but I do have this internal struggle on a daily basis that wonders if I've negatively shaped how everyone around us views Henry. It's kind of a mess to be a special needs mom. In many ways it's no different than regular parenting, as I've said before, but it does add another layer of hard that no one can deny.

Making sure a typical child is making friends, finding her niche in the world, getting the most out of his education, and learning about God's love and grace … it's a job. I've got friends with kids and I have three nephews and one niece, so I know this. Add on the layers of work for a special needs child, and it can be pull-your-hair-and-pour-the-wine crazy. (Not that I would know. Ha!)

Then, add on the questions: Who can I talk to about this? If I vent to her, will she think I have no joy in my life? Will she dart her eyes around and ignore me? Will I permanently alter her view of my child? Will she keep my confidence?

At the end of a hard day, this is where the brain often goes: I am so alone.

This is why support groups are so helpful, but they can be difficult too. For me, it's hard to vent when the other mothers are talking about challenges that seem so much harder than Henry's and mine. There's also the basement factor, which I'll maybe share on another day.

Right now I'm in conversations to build a more visible ministry for children with special needs at UUMC. It will be slow and painful, but I hope it will also bring more peace and joy for the families I know who are struggling. Church is the last place a person should wonder if their family is loved. Church is the one place we should know that a Jesus-feuled acceptance will be present.  I recently spoke with a mother who said, "We haven't been to Sunday School in a couple years because I just wondered if it was even worth it." My heart felt like a knife had punctured it.

So, I continue to struggle myself with "the dichotomy and dilemma or grief versus hope," but I hope I can be a small part of the plan that creates space for both, as well as welcoming space for our kids, at our church.