Parenthood, in general, is rich with “OMG moments.”If you’ve never had a child belch loudly during a religious service or run naked from the house to greet his sibling’s school bus, you’ve probably never had a child.
Parents of kids with special needs have more than their share of moments–some printable, some probably not. And like all moms, they do their best, with all the love and grace they can muster, every single day. On this particular day, a really wonderful group, led by Ellen Seidman of Love that Max, gathered in The Motherhood to trade stories, tips, and wisdom. Along with Ellen, we got to hear from Sunday of Adventures in Extreme Parenthood, Jennifer from Into the Woods, Living Deliberately, Lisa of Autism Wonderland, Dana of Uncommon Sense, Kate from Chasing Rainbows, Katy of Bird on the Street, Hallie from Visions of Johanna, and Shasta of Outrageous Fortune.
Handling Emotional Responses: Yours, Theirs, and Those of Total Strangers
So…those moments. Ellen asked the panel how they stay calm during OMG moments. Kate pointed out that it’s helpful to remember that “kids feed off our emotions.” If the adult can’t keep it together, there’s no way the kid will. Along the same lines, Ellen reminds herself to “Just breathe.” Dana hears, “Slow down,” and Jennifer tells herself, “I can do ANYTHING for fifteen minutes.”
And sometimes it’s not our responses to a meltdown that are the issue. So often, helpful folks in public feel the need to comment loudly on a child’s outburst or behavior, or at least stare with obvious dismay. Because, you know, nothing helps calm a distraught child (and mom) like public disapproval.
Sometimes, the rude people need a really direct response. For those folks, Sunday will stare right back and say, “My kid’s autistic–what’s your excuse?” Dana will also respond to a stare with a stare, and, if that doesn’t work, offer to allow the rubbernecker to come and fix the problem. (I didn’t ask, but I’m guessing that no one has stepped up.) For people who seem a little less hostile, both Ellen and Jennifer have found that introducing the person to their child in a matter-of-fact way goes a long way toward defusing tension. Even better, Jennifer notes, is if her daughter does it: “You can say hi. He just has autism.”
Siblings can be such great protectors and advocates for kids with special needs. But they have their own needs, too, and juggling everybody’s stuff is exhausting, as all moms know. It’s amplified when one or more of the kids needs extra transition time and has therapy and other appointments. Ellen and several other moms chimed in to say how important it can be to have a schedule. Sunday pointed out the impossibility of managing everything, saying, “Both my boys require 100% of me but I can’t do that so I do a sort of parenting triage. The big things get done first and the others have to wait.” Jo, another participant in the talk, added, “I guarantee your other child isn’t so much focused on the exact minutes spent with him/her vs. your child with special needs. Rather, make every minute count. And breathe into it. It’s impossible to please everyone all the time – for ANY parent – special needs or not.”
Spouses and partners (even exes) are usually a vital part of the operation–even if they don’t necessarily take control of it. Lisa said, I am so lucky to have the kind of husband I have. He’s very involved and supportive. Though I spend time delegating what needs to get done – but if I ask him, he’ll do it. If left to his own devices…” That seemed to be, as Ellen observed, a theme: Moms do the planning and big-picture stuff, dads do a lot of the day-to-day. And as Hallie pointed out, it can be a big issue in a marriage when both partners are not heavily involved with the kids, especially when special needs are in the picture.
Summertime, and the Living is
Easy Stressful. And Expensive.
Summer is coming up soon, and it doesn’t always mean relaxing days, especially when your kids have special needs. Sunday says she struggles to take her kids on outings by themselves because it really requires two adults to watch them both. Ellen commented on the general lack of summer programs for kids with special needs. Lisa said the worst part for her family is the transition back to school when summer’s over.
And of course, summer can mean vacations, which come with their own challenges. Jennifer said that her family finds it helpful to keep biological functions (eating, sleeping, and toileting) on the same schedule as at home. Katy also noted that even on vacation, it really helps to maintain a regular bedtime. She also passed along a tip from Pinterest: to keep kids from rolling out of bed, put a pool noodle under the sheet. Easing into vacations with shorter, weekend-length trips works for some families. And Ellen pointed out that Disney is really wonderful with special needs kids.
Mouse ears don’t grow on trees, though, which brings up a concern raised by Shasta and Sunday: vacations are expensive, especially when you’re limited to one income because someone has to take the kids to all those doctor and therapy appointments–which are also pretty costly. Ellen says her family has a special vacation fund. And Katy pointed out that sometimes spending the money on a vacation is just necessary: “I spent two years pouring every extra dollar–and some other people’s dollars into therapy. My husband got a bonus and I realized that sometimes having a good time is therapy too.”
It can be hard for any mother to take care of her own needs, especially when her child needs so much. Sometimes the self-care needs to come in the form of a much-needed vacation. And sometimes it comes in the form of a half-hour spent talking about it with friends who have been there, too.
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