Wednesday, October 26, 2011

Parenting A Child With Special Needs

When you were a little girl, did you imagine yourself as a mother? Did you imagine your child as anything but healthy? Did you imagine your child would need a wheelchair, multiple surgeries, or that your child's skin wouldn't stay on their body? I have to throw in that last one because it's EB Awareness Week. Click on Williams Family Blog in my right side menu to learn more!

In the beginning of my adoption journey, which began in early 2006, I was open to a child with a special need. I didn't have anything specific in mind, but I knew I was open to something. When the time came to finally go with an agency, mine wasn't accredited for special needs at that time, but in my homestudy, I still had the statement included that I was open to a child with a special need, though the social worker wrote "mild" in there, too.

Then, I had nearly 4 years to imagine life with my non-special need child, Apple, the one I'm still waiting for. Part of me always accepted that she might have a special need that wasn't diagnosed, but it was a vague notion. Suddenly, a new program opens up in China and 7 months later, I'm home with my beautiful, perfect daughter. Perfect, yes, because we are so perfect for each other. But her body didn't form perfectly and I am now a mother to a child with special needs. NEEDS - plural. I knew that my daughter's need involved more than on part of her. I knew that there was a spectrum and she was at the more severe end. I knew about her little legs. I didn't know about her feet, but the information was there if I'd known where to look, and I'm not surprised, and I wasn't at the time I took off her little shoes and socks in China for the first time. In fact, I remember saying to my friend, "We've got some very unique feet."

What I am facing now, is learning how to parent my little girl with her special needs, along with the fact that she was adopted at the age of 7 years old. I think I come across as a very over-protective mother at first glance, but can finally put into words one of my gravest concerns:

Because I haven't had my daughter very long, because she grew up in a rural Chinese orphanaged and had never been outside of it, she doesn't have the experience or skills needed to filter all the behavorior she sees, or the moral compass to navigate with. If she sees kids having a good time, she wants to join in, regardless of what they are doing, good, bad, dangerous or otherwise. She also doesn't know to ask others for help and she's an easy target for anyone who wants to exploit her.

Don't get me wrong. She is very smart. She behaves very well. But ignorance is ignorance and experience truly matters.

She also doesn't know her own physical limits and I don't either, but we're learning. Honestly, we've applied for a handicap parking placard. My back is messed up from carrying her and the bag of necessities that accompanies us everywhere. We don't need it for the grocery store, but for big church events or museums, etc., where parking is hard and far, we've had some pretty painful times. The last of my blisters is finally healing after carrying Jie Jie down to the lowest of lows of the lower parking lot at our interstake center, a large meetinghouse for several area chapels. The hike down was three weeks ago! We were lucky to hitch a shuttle ride up. Another not-so-secret is that we use the stroller A LOT. Jie Jie is very energetic and plays hard, runs, jumps and all that "normal" stuff, but at play, she can and does stop when she needs to, most of the time. When we're out, we can't always stop and after three days of limping after a small zoo trip covering only half our small zoo, I knew we needed to reevaluate handling Jie Jie's feet.

It's hard to believe looking at my little nugget fully clothed that our van will soon be sporting a handicap placard, but one look at her in shorts paints a different picture. I never imagined it. Do I mind? On one level I mind for my little girl's sake; that her body didn't form in a healthy way. Reality, though, I can't wait! Today my back is screaming and I'm looking forward to our chiropractic appointment this evening. I welcome anything that will assist us where we need it. Anything that will help prevent my daughter from being in pain, and maintain good health is at the top of our list.

I admit to a new fear, a small one, but necessary, that sits at the back of my mind. Since learning about Jie Jie's spinal anomalies, I am more concerned about injuries. If she hurts her neck or her back, she may need radical treatment vs. treatment that a child with a normal spine would have. Same for her ankles and feet. A twisted ankle could mean major surgery.

There are many things like this going through my mind, as I learn how to be a good mother to my daughter and begin to understand the changes I need to make to accommodate her special needs. I am more eager to connect with other mothers like me, especially ones who have older children and have adjusted to this kind of parenthood because they have valuable resources and advice.


Catherine said...

K, you're doing a great job navigating your new world of being a mom!

Did you happen to see the series RQ did earlier this year on SNs? Wasn't sure if you might find someone there who might share some of what you do?

The series is listed towards the bottom of this link.

China Dreams said...

I returned four weeks ago with our 7-1/2 year old daughter from China. She was born with club feet and we knew that when we adopted her. We did not know that the Ponseti method (soft tissue corrective surgery) had been tried and failed. We did not know that her handicap is much more complex than expected. (It would not have mattered, but it makes a difference going forward)

She is only 40 pounds but needs carrying at times-up/down wide stairs or slippery surfaces. It hurts my back. She is a very happy girl and healthy otherwise, but I worry about whether or not the "simpler" procedure which will make an invalid of her for 12 months will be effective or if the more radical partial/full amputations may be necessary. She has no pain. If leaving her alone is the answer, we will leave her feet alone and she will live her life that way.

However, our first daughter had a growth problem and one leg stopped growing while the longer leg bowed. She needed radical surgery at age 13 because she had no growth plates left/was done growing. The surgeon said she would probably need her hips replaced by age 30 and her knees replaced by age 35. She is 28 and her hips have been bothering her for the past year.

I wonder what is happening to our new daughter's hips and knees and spine.

If you want to talk more personally, shoot an email my way.