Gillian Marchenko

March Home Staging, Jooniper Design, Author & Speaker

A special needs parent’s response to “I don’t know how you do it.”

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 look away.

I don’t think the other person believes me when I say that I am not parenting my kids with special needs very well.

And that is probably my fault because I only show them the good parts of my day. The good parts of my kids. The good parts of my community service. The good parts of me.

As a parent of kids with Down syndrome, I don’t feel like I am allowed to talk about the struggles, because that somehow means I don’t love being Polly and Evie’s mom.

Not true. Struggles and blessings co-exist. Always.

My response as a special needs parent to “I don’t know how you do it” is this:

I do it because they are my children.

I do it because I am their mom.

On good days, I get up in the morning and cut my losses and struggles from yesterday (because when you parent a child with special needs, there are usually daily losses and struggles). I look my kids in the eye, breathe out a prayer, hug them, and hold on a while because they are worth it, and our life is blessed.

On hard days, I lock myself in the bathroom for five minutes, and cry over the fact that my my daughter Evangelline doesn’t talk, or that Polly hasn’t made any real friends yet, and I look my kids in the eye, I breathe out a prayer, hug them and hold on, because they are worth it, and our life is blessed.

I cry because they are my children.

I cry because I am their mom.

Let’s be honest.

What parent thinks he/she is doing a great job parenting their kids, “typical” developing or not?

Who doesn’t yell, or flip on the television, or lose themselves in the world of social media for an hour to get away from the high tension and exhaustion from parenting kids.

I’m not saying parenting kids with special needs is always easy.

Some days I don’t do it well. That’s just the plain truth.

And some days I do better. For that I am grateful to God.

But I am saying that my kids are always worth it.

And that’s how I do it, and why I do it.

Just like any other parent who attempts to parent well.

Because they are my children.

And I am their mom.

(*This post was originally shared in September of 2012)

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7 comments found

  1. 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

  2. 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!’

  3. 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.

  4. 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. 🙂

  5. 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…

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