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A special needs parent’s response to “I don’t know how you do it.” “I don’t know how you do it.” Special needs parents, raise your hand if this a sentiment you hear often. I hear it a lot. And I make a charming joke, “Not very well, that’s how I do it.” Small, calculated chuckles abound for five seconds making my conversation partner and I both feel good. But then the laughter dies, and I
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Special needs celebrations are still celebrations … “Mom, no! Too loud. I don’t like it!” I’m standing on the sidewalk outside our house with Polly, my seven-year-old daughter with Down syndrome. It’s the 4th of July, and our neighbors are shooting off fireworks. “Come on, Polly! It will be fun! Let’s just look. We won’t go close.” “No Mom! I don’t like it!” Polly crouches down to the ground and curls up in a ball.
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Go with the strength you have … It’s happening again … That horrible feeling that comes and goes as a special needs parent. Am I failing my kids? Should I be doing more? Could someone else parent my child better? I’m starting to feel like a failure. I just don’t think I have enough strength for this parenting gig today. And then I remember I am reminded of a lesson God taught me through a
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Joni and Friends Special Needs Family Retreat Report Last week my family had the honor of attending a Joni and Friends Special Needs Family Retreat at the Maranatha Center in Muskegon, Michigan. I’ve been on the Joni and Friends Chicago Equipping Team for the last year, teaching churches about special needs ministry on Sunday mornings and about respite. My friends at Joni and Friends gushed about Family Retreats that take place in several different locations
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7 Responses
Gillian , I have always heard “I give you alot of credit, I couldn’t do it.” To which I respond “I couldn’t either. If you want to give me credit, I’d gladly accept your credit card to help me with all the unexpected costts related to caring for my daughter!!!” I love your honesty! It is so rare in the special ed community for a parent to admit their disappointment, struggles, etc. I admire you greatly!! God Bless you! Sandie
I love that response, Sandie! I might need to borrow that ;).
Thanks!
I have heard both sides of the coin. I raise my son (Down Syndrome, Autism and non verbal, possible Apraxia) on my own since his father abandoned us five years ago. On one hand I have loads of people saying ‘I don’t know how you do it’ and then I have a sister of mine telling me that I’m not allowed to have bad days and stop acting ‘woe is me’ and that ‘it’s no different or more difficult than raising a normal child!’
No offense then, but your sister is a moron.You’re allowed to have bad days.
I loved this post! I often feel like I’m not doing a good job parenting my daughter with special needs (and even feel that way about my other two children without special needs) but your post encouraged me to remember tomorrow offers the fresh beginning of a new day! Besides, I can’t do it in my own strength, only in His. Thank you for sharing so honestly from your heart.
Hi Gillian –
Thanks for such an excellent blog. I’ve been an on & off reader for a while now. I have twin boys on the way, and while the chances of them having DS are extremely slim based on the genetics testing we’ve had done, ANY blog about parenting is very helpful. Also, as an educator, any blog about kids with special needs is a good read for me, too.
I really have nothing to add other than that I sub frequently at your daughters’ school, and I just wanted to say hi. I frequently subbed in Ms Domanski’s (& Ms. Bayer’s) room ( and really, everywhere else in the building), and assisted Luke H. a lot, so I had a lot of contact with Polly too. Such a good kid; it was always a pleasure when I got to spend time with her. She always brightened my day.
Anyway, you have great kids, you should be very proud. Tell ’em Mr. Van says hello. 🙂
Ive had people ask me “How do you keep your sanity?” and I say “I dont.” Thats not a joke or attempt at humor. I have three autistic children , no family support on either my side or my husband’s side. Nobody understands that most days are hell because who wants to hear how bad it REALLY is. I hate it. It’s not fair to us or our kids. I try to be patient and “cope” but I’m always on the edge. I don’t abuse my kids, I feed them healthy, and we have sacrificed a LOT to make sure they’re well taken care of and theyre blissfully unaware. I’m their biggest advocate. But am I okay with all of this and happy to deal with it 24 hours a day forever? Do I hold it together gracefully? Not by a longshot…