Friday, July 17, 2009

I Have A Special Needs Child

The other day, I took the kids to our local library. It's a wonderful place, full of Christian books and media and we all enjoy incorporating it into our summer routine. It's housed in a large, regionally-minded church. The bonus for me is that there is a lovely little cafe and an indoor play land on site also. We usually make a whole morning of it.

This week, our visit was different. This week, I was reminded of something that I don't have to think about every day. This week, the Lord used the events of the morning to show me something that I hope The Gang can all learn from and use to honor and equip our Li'l Empress for her future as a child with unilateral hearing loss.

Hang in there with me, this won't be the shortest post I've ever written. But I've been praying through the events of the day and processing it since Wednesday. I'm hoping that The Gang will learn from it; but also that you might learn something that you can someday, somehow use to bless another in your life. Not necessarily an adopted someone, or even a someone with hearing loss. I am hoping that the lesson we're working through will be able to translate to a variety of circumstances. When something big happens to me like this, I want to be able to process it and re-interpret it for a variety of similar circumstances in life as I experience it. Cuz' that's how I think. It's that big-picture thing I got goin' on, you know.

So anyway, this cafe and play land is a huge cavernous space, with tall ceilings, glass windows surrounding, and tiled floors. There are no softscapes to soften noise, save a couple small couches and area rugs around the perimeter of the space. The echoes themselves are startling. Add to that the regular noises of a busy cafe (grinders, steamers, cash registers, whirring fridges, running water, etc.). Add to THAT the normal exuberance of children running all over the space, laughing, yelling, crying, and sometimes screaming. Further, throw in a dash of mommies talking, often in loud voices over the hustle and bustle of the environment. What do you get when you throw all that together and give it a good stir?

Well, you get a really poor listening environment.

I never heard the term before we began working with our local Early Intervention team. But it is just what it sounds like. A really difficult environment to be able to hear individual noises. A place where the constant echo and the dull roar of what amounts to "white noise" is literally bouncing all around the room. A space where identification of sound and its source is nearly impossible for someone with unilateral hearing loss. You see, when we listen with both ears functioning normally, our brain can filter out the unimportant background noises and help us identify what noises we need to pay attention to. Voices of our children. The cashier telling us that our warm scone is ready. Children in distress. Cars speeding toward us. Fire alarms. You get the picture.

What I observed in our short time on our outing on Wednesday is that Li'l Empress was working really hard to keep up with all her little brain was taking in. She was having a hard time isolating the voices of those who make her feel safe. What the Lord graciously pointed out to me is that on days like this, I must remember that I do, in fact, have a special needs child.

Now, as her mommy, I am keenly aware that she is special. Not in the "all my children are special" way, although there is a huge dose of that in there. Rather, I am training myself to be aware as often as I can that she does not hear like the rest of the world. But quite frankly, in our daily home environment, that doesn't come into play in any sort of an emergent or crisis mode. It's more in observing that she's been playing alone for longer than normal. Or in noticing that she's sitting in her high chair with her head on a swivel while we're all chatting around her. Not the most polite or respectful way to treat her but certainly not unsafe. At those times, I stop the conversational free-for-all and remind us all to take turns and try to include Li'l Empress as much as possible.

It struck me while working quickly to wrap up our outing that these poor listening environments are physically exhausting for my girl. It was all too evident in her very short fuse and her emotional melt-down that was looming (why I was working so quickly to get us out of there!). The difficult thing is that I was also managing 4 other children who were blissfully unaware of the stress that their little sister was experiencing. And that I was trying to manage.

I'm a tad embarrassed to admit that while I was corralling everyone out to the van, I started to make the high-stress situation about the older kids' behavior. I focused on their actions (which were annoying and difficult to contain, but certainly not the SOURCE of the stress) and started to "go to town" on them. I felt a physical check in my heart and stopped my rant. It surprised them all. But in that moment, I told them what was really going on. I just laid it out, all that I'd observed. My gratitude that the Lord showed it to me in a safe and non-crisis situation. I reminded them, and myself. Li'l Empress has a special need. That need is one that effects every environment which requires her to listen. And our family must work together to help her first to feel safe and protected. Then work with her to learn to cope with and identify those sounds which are most important to know. We all needed that reminder. We all needed to stop and think about how things feel and sound from her perspective.

It's going to be a great thing for Li'l Empress, to be surrounded by that kind of love and care. It's a great way to further build our sense of family and mission. It's going to make us all better people. More compassionate. More aware. More in tune with the sounds that really matter.

A bloggy friend (and fellow LH'er) once said something to this effect (about her own daughter):

"She has a special need. Her special need is us.
And our special need is her."

That sentiment has stayed with me for our whole adoption journey and pounded in my heart as we prayed and sought the Lord for wisdom on whether or not to pursue a special needs child. It came back to me again on Wednesday.

I am The Gang's Momma. I have a special needs child.


Territory Mom said...

You made me cry today, but in a good way. Thank you. God is so good. Having a good listening environment allows you to hear the voice of God. I am now telling a little boy to be quiet. A little boy the doctors said would never speak.

mamamoosetakespictures said...

Perfect post Gang's Mama. Oh so true. I too have a child with special needs and I have a unilateral hearing loss too. I know how your little girl feels in a place like that, it's really overwhelming to the brain and even exhausting. Hopefully, she'll gain the skill I have in places like that...learning to self center and mentally block out the noise by focusing in on her thoughts alone.
Always feel free to email me if you need ideas/thoughts on hearing loss. I know a lot about it. :)
We have discovered w/ Moose girl that certain things that we can do easily she can't and it's made a reevaluate how we look at life, but on the other hand, there are things that she can do that we can't so, it works both ways.

heidi @ ggip said...

Great post. I think we all consider the different needs of our typical kids in everyday life, but it is harder when it is something that doesn't come naturally.

Debbie said...

I think this is interesting. Our daughter Molly ( who as you know has not had her CI activated yet) is completely deaf. But even before the implant surgery, it was so easy to forget what she must be going through because she is so bright and has adapted so well. I will catch the boys raising their voices to her because she did something they didnt like and have to remind them that you dont have to raise your voice...she cant hear you. This is a good reminder for me too.

Carol said...

Great post....thanks for sharing.....yes I think ME said best.......ok off to play with Em!

Trish said...

This made me think of my first attempt to take Michael to toddler storytime at the library. We left with both of us in tears after about 15 minutes, although I had no idea why it was so difficult until a couple of years later when he was diagnosed with autism.

I truly believe that you will see amazing things happen in you and in each of your kids (including Li'l Empress) through having her in your lives. Blessings to you!

Aus said...

What a wonderful post you made dear friend! And what a great piece of parenting you pulled out of your trick bag - and thanks for recognizing a little Divine intervention there too - that's soo often forgotten! Being pretty dang deaf myself (I wear hearing aids pretty much all the time and have noted over the last year a pretty profound increase in loss...) you are ever so correct in recognizing how quickly a bad hearing area can overwhelm us, the difference is I'm an adult! If there is anything you'd ever like to discuss I'm happy to share the experiences!

Hugs - great work - and yeah you are a mom to a sn child - and from my chair I'm glad you are there for her!

aus and co.

Jessica said...

This was a great post. I don't think I realized that you have a special needs child either. She is so normal to me and acts normal and until you posted even forgot that she has a hearing problem. thanks for sharing and helping me realize how to teach my children how to be around her too. Thanks and your doing a great job raising her. She is a precious little one.

pups n horses said...

Maybe just maybe stop thinking of her as “special needs”. Be aware that she has a difficulty – but in the big picture this is only a distraction. Teach her to be independent -- teach her that it is ok if she can’t distinguish a familiar voice. If you treat her like glass she will break. She is no different than the other children and that is what you must focus on – yes be aware of her hearing but don’t walk around on egg shells. I know this because we have a “special needs” child in our family. I know this because I used to watch a little boy with cerebral palsy, and he was also blind. I know this because a friend of sir jjj has hearing loss in one ear – born this way. From all the years we have known him his biggest frustration is people noticing that his ear looks different. I am not saying to complete ignore this, but don’t focus on it. The more you help her along to accept and adjust, the happier she will be as she gets older. Treat her as though she were any other child, if you focus on the hearing loss she just might think there is something wrong with her when in fact there is nothing wrong with her.

Thoughts from a practically perfect woman……….oooooops I keep thinking my name is Mary Poppins – my bad. 

adoptionroad said...

Thank you for perfectly describing a poor listening environment. Our 20 mos old has UMA and because she does hear so well in normal conditions I forget how easily a noisy place like that affects her. We just spent 3 days in Disneyland and although there were a few things she enjoyed, overall I think the place was less than magical for her. The constant noises and voices and music made her exhausted each day. It even made me exhausted!

Wife of the Pres. said...

Thanks for sharing. I needed this.