We Torched the Village. Now What?
by Shannon Aronin on November 1st, 2015

​I don’t feel well. My list of medications and disorders is very long. Most of them have clinically significant diagnostic criteria like bloodwork or imaging results; elevated white blood cells for example are hard to fake and impossible to control. Without boring you, I will say that what most of my conditions have in common is that they are exacerbated by stress. And I am not alone. Research has shown a connection between chronic stress and health outcomes in parents of children with intellectual or developmental disabilities.                                   

My to-do lists are long and I am tired. Between my son and myself I can only handle so many doctors or various therapy sessions at one time. I am always hearing how important “self-care” is, but I can barely make time to go to doctors in order of urgency as time allows, bonus if I make it in without re-scheduling more than twice. My fight or flight responses are high. I need to better manage stress. But yoga and massages are expensive and their effects seem so fleeting. Relaxing just seems like so much work. Again, I am not alone. One study found that “more than 30% of the mothers raising children with autism spectrum disorder reported moderate to severe depressive symptoms when their children were 9 months old. That rate compared to 21% of mothers raising children with other disabilities and slightly more than 16% of mothers with typically developing children.” 

I was recently talking to a mom friend about some horrible news story of massive neglect of very young children. It was a single mom with five kids. The common refrain was that “she should have asked for help.” Very different situations, but it made us wonder -- from whom? Is there a line of helpers in the wings I don’t know about? It DOES take a village. Unfortunately, we, collectively, burned that sucker down. I’m a pretty good mom. (My son’s counselor told me he talks about me as if I were a goddess, her words, not mine. No one is that complimentary of their mother in therapy, ask Freud.) But I’m not Mother Theresa. I understand the feeling of just not being able to go on, or what it’s like to walk away from your kid because you are so angry you need to have him out of sight… and he follows you.

I wish I could just take breaks with my husband. I need more than dinner and a movie, although it’s a start. Date night feels like a tease for what I need. If I could just have a couple nights a few times a year away with my husband that would help. But it’s not really possible. Our situation makes it more difficult, and more nerve-wracking, to “just get a sitter.” After our last real break together last March, my batteries were recharged and I was the mom I want to be for a solid couple of MONTHS. I think if I had four weekends off with my husband a year, I would be a lot closer to saint status.

I wish we could live closer to friends and family and had more help. But it’s more than distance from the places we grew up. And we are not alone. Most special needs families feel isolated. Story after story of people feeling unwelcomed, unwanted and a nuisance to friends, family and even their faith community. People have told me stories where loved ones did not want their child at family events, stopped including them, where their child has outright been referred to as a burden. Almost all the parents I talk to have had relatives suggest that maybe the kids will “grow out of it.” Families like ours are excluded from many things lest the child’s behavior inconvenience anyone. And when the child is symptomatic of their actual disability, their extended family and friends look away and wonder why we can’t all “just control our kids.”

In general, people don’t know how to respond well to mental health issues. In 2013, Larry Lake wrote one of the most poignant things ever published on the internet, “Comfort Food: No one brings dinner when your daughter is an addict.” I know common wisdom is not to expect anything from others. Every special needs parent I know is lonely and very few have more than a threadbare support system. We're all supposed to be these independent islands, asking for help is an imposition.

Part of it is that the chronic nature of mental illness and developmental disabilities makes it more difficult to discern when to jump in, but a lot of it is fear. When I talk to my tribe of special needs parents, the theme of the shared experience of badly needing help is fear. Our families and friends are afraid. I understand you’re scared – scared of administering medications, scared you aren’t equipped to handle a meltdown, scared the child won’t do what you tell him. We’re scared of those things too. Here’s a straw – Suck. It. Up.

I’m addressing the friends, family and loved ones of all special needs families, so pretty much everyone. Respite is a short period of rest or relief from something difficult. Raising a child with any disability is really hard. The longer you go without relief, the harder it gets. The harder it gets, the less effective we are as parents. Every single one of you reading this has a friend or family member with a disability that could use a helping hand. Maybe they don’t need two nights off, maybe they really would cry with gratitude if you just watched the kid while he was asleep for a late date. Maybe they really need a nap. Or a casserole.

Special needs parents aren't superheroes that God chose because they are perfectly patient souls. They are just people putting one foot in front of the other. Because we are parents, and we have the love only a parent can have that sees past the imperfections. So, what other choice is there? When you think "I could never do that," I promise you that you could. If you had to. I’m asking you, on behalf of all special needs families, lend a hand because you choose to. I nominate YOU to take a concrete action to help a family with a child with special needs.

Special needs parents, what is the kindest break someone has given you that allowed you to take care of yourself? To everyone else, especially during this season of gratitude and giving we are about to enter, what can YOU pledge to do to help lighten the load, to be a part of rebuilding the village?

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Sloane Dangleis - November 2nd, 2015 at 12:24 AM
I have an amazing friend. Jamie Cartwright she is 29, and my very dearest friend. She will come over and help me with Cassidy m; beautiful, smart, highly energetic 3 year old autistic daughter. She will let me take a shower and a nap!!! Didn't have a clue those two things would be so hard to achieve. I am 29 exhausted and do this with no family, husband or boyfriend!! All help is welcomed and appreciated, Thank you for this post!! Amazing people with beautiful hearts is what makes the world go round.
- November 2nd, 2015 at 2:17 AM
Single parents are heroes. I don't know if there is a word for the admiration I have for single special needs parents.
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