Sunday, June 17, 2007

"What's wrong with her?"

Yep, I hear it. Not alot, but too much! It usually goes something like this, "Mommy, what is wrong with her?" To which the mother usually responds one of 3 ways. The first, "shhhh!" Promptly followed by the mom grabbing the childs hand quickly scurrying off, hoping I didn't hear the whole transaction. The second, the mom ignores the child all together. Again, she is hoping I didn't hear her child ask the dreaded question. Or, the third, the mom says, "I don't know. Let's talk to her." Or some variation of that.

Now, I have to make a confession...before Lil' Bug was born with birth defects, I was a bit "scared" of special needs people. It isn't because they themselves were scary, but rather my ignorance scared me. I didn't know what was acceptable to say or ask and so I just steared clear. With that said, I can't be too upset about the ways others deal with the same situation when seeing my daughter. But it hurts.

Right now Lil' Bug doesn't understand any of this. This is all she has ever even known. She was sized for her first pair of A.F.O (ankle foot orthotics) when she was just 8 months old. She has been wearing the braces ever since (albeit, she is on her 4th set). She was given her walker when she was about a year old, so she has used it more than half of her life. She doesn't know the difference. In my research I have learned that children don't really have self awareness (or recognition of their differences) until they are about 4 or 5 years old. That is not to say that Lil' Bug doesn't know she wears AFO's, but it is to say that she doesn't realize that isn't the norm.

As she ages, I get a little more nervous. At some point she is going to realize she is different from the other children she plays with. She will ask questions that we will have to answer. She may begin to question her value in life. When I did all the research about Spina Bifida before her birth, I read that children with Spina Bifida (and other birth defects) often suffer from low self esteem. My responsibility as her mother is to help build her self esteem now, telling her of her worth.

Most of my encounters during Lil' Bugs first year of life were limited to doctor's and parents of other children with special needs. Her physical therapist came to the house. I brought her to a group therapy session at her school once a week for strength building and balance. That was about it for a while. Also, she was little enough that she wasn expected to walk, so she didn't stand out as much. When she was tiny it was hard to see that she had a birth defect.

As she got older, it became more obvious to others. The first time I really hurt for her (and for myself) happened when we enrolled her in her first semester of music classes. I called ahead and spoke to the instructor/owner of the class. I explained her circumstances and she assured me that Lil' Bug would be able to be involved in all the activities. I was excited because I wanted to be sure to expose Lil' Bug to healthy, typical children, not limit her to just the special needs circle we were so involved in prior. We went to the very first class and although I blinked back the tears and was hurting on the inside, I had a smile plastered on my face. That was the first time the reality of it all really hit me.

I sat there while the children (ages ranging between 3 months to 3 years) ran around singing, dancing, and playing and I held on to Lil' Bug. I held her tight. She couldn't run, so I ran for her. She couldn't dance, so I danced for her. I became her legs. She was just about a year old when we went to this class for the first time. She didn't notice the differnces, but I noticed. I was sad. The other moms smiled at me, but didnt' ever really talk to me. I know they were curious of our situation, but none of them had the courage to say much. I felt alone. I walked out of that first class and quickly walked to my car. I placed Lil' Bug in her car seat and I started the car and took off. The entire way home I cried...yep, I cried! It wasn't because anyone said anything inappropriate. It wasn't because Lil' Bug wasn't included. It wasn't because Lil' Bug didn't have a great time (in fact, she LOVED it!!!). Nope it was none of those things! My crocodile tears were because I hurt for Lil' Bug and I hurt for me. I knew our lives would be different, look different, but until I let us be exposed to those things, I was able to hide from them. This class made it so very real to me.

I have since involved Lil' Bug in a lot more activities in which the vast majority of the kids are healthy. It has gotten easier. However, there are some activities that I have to decline because it is too much work for me to help Lil' Bug. For example, our MOPS group doesn't officially meet during the summer. However, twice a month they do get together at a local park for the children to play. Most of the moms are able to sit and talk while their children safely run around, giggling and playing. Not me! I have to be by Lil' Bugs side 100% of the time. First of all, she can't maneuver her walker through the mulch and sand, so she needs help. Second, she can't climb steps or other playground toys without assistance. Third, unless I am there to protect her and her walker, often times other children take it from her. If she is in it, she falls. If she is not, she is stranded until they give it back. So, I stand guard for her. Not to mention that I get exhausted. She weighs about 30 pounds and all that lifting and carrying makes my arms and back ache!

No parent ever wants to see their child hurt emotionally or physically. But, I don't want Lil' Bug to ever feel entitled to special treatment or not worthy of it either, if that makes sense. The Designer and I have tried with all of our might, to make Lil' Bug's life be as normal for her as possible.

One of the ways we have done to help build her self esteem is telling her that God made her and God doesn't make mistakes. We talk about differences. We haven't ever addressed her differences, but we point out different colored doggies, different textures, different activites, different whatevers. We are always sure to tell her that just because they are different doesn't make one better than they other. They are just different. We can't get into deep discussions with her. I mean, she is only 2, but she gets it. When I ask "who made you?" She proudly proclaims, "GOD!" When I say, "Does God make mistakes?" She shouts, "Nope, never!"

I know that I will face many more emotional challenges dealing with Lil' Bug, but I must admit that by God's grace, we have fared well so far. I think Lil' Bug is a fantastic child. She is a social butterfly. She is sweet. She is honest. She is the light of our house. Everyone that meets her is drawn to her bright smile and inviting eyes. I have been told by more than one person in the past that when they see Lil’ Bug, they see Jesus. No, of course she can’t be compared to Jesus. Nothing compares to Jesus. But what that says to me is that they see His love, His grace, His spirit in her. For that I smile!

For those of you that might feel like I used to…a little intimidated by a special needs person, I have a challenge for you. Get to know that person. Ask questions. I LOVE it when people ask about her disability. That is my opportunity to educate them about Spina Bifida. It also shows me they care enough about us to want to learn more. I have never been offended by a sincere question. I have corrected people’s wording before. That is not to make them feel bad, but to educate them. When people ask, “What is wrong with her?” I respond, “nothing! She just walks a little different than you. She is different, but not wrong.” People get are starting to get it, I think. That, too, makes me smile!

8 comments:

nush said...

Angie thanks for sharing once again. I am right there with you when it comes to having had feelings of discomfort around severely disabled children/people. And I too firmly believe it's due to ignorance, lack of experience, etc. I have found that the more I reach out and get to know people and new circumstances; the discomfort goes away all together. I so believe there is nothing “wrong” with disabled people. You are right God does not make mistakes. We are the ones that have individualistic ideals of what a person needs to possess to have quality of life. There may be a majority, but not "norm". God has created us all equal; however, we are all different in many ways. Each unique, special, possessing different talents, strengths, weaknesses, etc.. I think our lack of self esteem comes from our comparison to the world’s standards, and what it deems valuable. I think the only way to protect lil but and ourselves from falling into misconceptions about ourselves is to be constantly reminded of our value to God. You are awesome at that Ang! Lil bug gets her dynamic spirit from you!

BlessedWithDaughters said...

Angie,

Really really really appreciated this post! Bug is beautiful, by the way. Love her smile!

I especially related to the part that talks about how you love it when people actually ASK what they're wondering. I'm constantly telling my husband that I wish people would just come up and ASK us about our kids, rather than whispering behind their hands or making assumptions about our girls and our adoption. (It's not the same as a disability, I know, but since my kids are biracial, you wouldn't believe how many people assume that I cheated on my husband or that I was previously married--or that Rob's not my husband...there are lots of scenarios--when we're all out in public together...at least when they find a way to broach the subject, I can use the opportunity to teach them a little bit...)

Keep writing! This is a great blog and I can't wait to refer others here.

--Mindy

Angie said...

Thanks to both of you for your kind comments. I appreciate knowing that I might be making even a teeny-tiny difference in the world.

Honestly, I wouldn't change one thing about Lil' Bug. She is a wonderful child and I am a better person for having had the honor of being her mom.

Nush, I love that you haven't judged my family based on Lil' Bugs disabilities or shyed away from us. Blessed, I love that you can relate (even under very different circumstances). It makes the world feel a little bit smaller, knowing others around us can relate!

Erin said...

I know when I met you I didn't quite know what to say about her. How do you ask, and ask politely, I so often stick my foot into my mouth.

However, when you talk to her and spend more than a minute on the surface things you can see a sweet smart beautiful little girl. and that makes it easier somehow to ask. So often when you see a special needs person, you only see their needs and don't take the time to look beyond that.

Angie said...

Erin, thanks for your honesty. I guess as long as you are asking out of a sincere heart, desiring to know more about the child/person, there really isn't a wrong way to ask about a disability.

When people say, "I see she uses a walker (has braces, whatever). May I ask what for?" I find that to be a great ice breaker and then I can educate them.

Just asking, "Would it be okay for me to ask about your disability?" is even fine, as long as it is being ask because one really wants to know and not to just make conversation.

Doing anything that is out of our norm can make us uncomfortable, but the more you do it, the more normal it becomes and suddenly you realize asking about something doesn't seem so weird any more.

mommyof2boys said...

What a wonderful post. You and the Designer are fantasic parents to lil' bug the way it sounds. I have learned so much from your blog already - I hope you keep it going!

Sherri said...

I love this post :) I admit that I also used to be "scared" or nervous around someone with a disability because I had no idea what to say or how to talk to them. Glad I'm not the only one :)

Your daughter is beautiful. I can see why people say you can see Jesus in her. She is adorable and honest. Just from what you have told me I can't wait to meet her :) You and dh are doing a fantastic job raising her.

Natryn said...

Angie,

This post is so helpfull to so many of us, who are tongue tied when we want to ask questions and not sure how to put things into words... I dont want to ask questions a child might feel uncomfortable with, so if I say anything, I end up stumbling thru it and sounding like a fool...

I had a lot of practice with that as a photographer in the mall tho, because I needed to know if there was something children could not do, for my posing purposes.. I guess it got a bit easier, but I still stumbled thru it a little...

I know children can blurt out things they dont understand, like "whats wrong w/ her"~ I love your return statement and plan to use it "Nothing is wrong with her, she is just fine. She has a walker to help her walk, but she is walking right?"~ And GOSH I will be sure to teach my kids NOT to touch other peoples toys and other things, how rude!! I am sorry your daughter finds herself in that situation so often, that is unfortunate that parents arent teaching thier kids a little better then that.. (ok that last bit might be in response to your YMCA post, Im kinda just reading down to catch up hehe) :)