Wednesday, August 24, 2016

What Life in a Special Needs Family Looks Like

I've been giving you the hard sell on my book lately and I'm about to stop; but, before I do, I want to show you what a day in the life of special needs family looks like. 

It looks like a sister and brother racing up and down hills on a walk. 

It looks like people "helping" to make pot stickers for dinner. 

It looks like kids being kids and my husband and I being parents. 

My family doesn't have a "normal" day - but I don't know any family that does. For us "typical" includes special equipment (like my daughter's motorized wheelchair and dressing tree or my youngest's splint), frequent medical appointments, and always trying to adapt and improve how we do things. 

Some days being a parent is the hardest things I've ever done; some days it's the greatest gift I've ever been given. Usually that's the same day. 

One of my biggest concerns about becoming mom to children with "extras" was how it would affect our typically developing eldest child (who had a more correctable need).  Early on, he helped lay those fears to rest. During the adoption process for our daughter, we showed our son pictures and video of his limb different sister, trying to explain her differences the best we could. 

Some time later, our son told us that our daughter wouldn't be able to play golf. We naively assumed he was telling us this because of her limbs and assured him that she would be able to golf, just differently. He insisted repeatedly that she wouldn't be able to. Finally, we asked him why he felt that way. His answer was so beautifully three-year-old boy: "Because her a girl," he said matter-of-factly. 

Well, that girl has shown him what's she made of time and time again. And that little boy had shown us what a wonderful big brother he is. Last week was back-to-school week for us, and now that they are in first and second grade respectively, they are on the same playground this year.  They spent the first two days of recess playing with each other (football, by the way). My rough-and-tumble guy's guy chose to forgo playing sports with his sweaty, arm pit noise-making friends in lieu of playing with his little sister. And it's not like he was doing her any favors. They each felt lucky that their sibling had chosen them instead of their other friends. Just hand those kids their diplomas already. 

Life, of course, is not always like that. We like to joke that there's often a lot of crying at our house and that sometimes it's the kids. (Naturally, our youngest who is on the school's TK/K playground felt left out when he heard about his sister and brother's joint playtime.) 

There is no average day-in-the-life of a special needs family. Each need is unique; just as each family is unique. A child with developmental delays and a child with physical or medical differences each experiences life differently, as do their families. The things that become my normal will never become another family's normal, and vice versa. 

The first time Matt and I ever went to a special needs support group, everyone went around the room and listed their child(ren)'s needs. Each time a family explained their situation, I thought, "Oh my goodness, that sounds so hard." In talking to some other families later, it turns out they were thinking the exact same thing about us!

If you're a special needs parent who feels discouraged and overwhelmed, please know that I've been there and that this perspective has been years in the making. 

If you're a prospective adoptive parent who is considering special needs and are scared and afraid, please know that I've been there. 

To each of you, I would say this: Seek out other families who have been where you are and who are where you want to be. Listen to their stories. Any family that only tells you the hard is only telling you half the story. Any family that is only telling you the happy is only telling you half the story. There are no good days or bad days in parenting - there are only days, each one more fabulous and maddening than the last. 

Here are some families I've followed in stalker-like fashion over the years, all of whom happen to have children with special needs. 

Finally, do you remember my friend Cal/Mr. Scientist who spend the holidays with us through an orphan hosting program? He happens to have a special need and he's still waiting for a family.  I know his family is out there, even if they don't know it. Dear Family, We've been praying for you and for this very special little boy. We know he'll fill a void in your heart and lives that you didn't even know was there. 

Please contact me to learn more about this very dear ten-year-old boy. 


  1. I will NEVER forget the first day of meeting your new daughter, she was crying and you picked her up to take her up to your suite. Her new big brother reached up and touched her toes. He told her not to cry he would always be her forever friend. And indeed he has been. Touches my heart every time I think about that moment. You might live loud, but you live LOVE!

  2. Still laughing at the "Because her a girl" comment! - K.