Can't Fix What's Not Broken!

(A milestone-crossing midline with her left hand. What does this mean?

The two lobes of her brain communicate.)

"Can you fix it?"

"Yeah sure, but I don't think it's really broken.”

Last weekend I went to Wal-Mart for the finishing touches for Ivey's party. As I was buggying down the frozen food isle, I passed a mom of two, one child had Down's. The little girl was extremely friendly and chattered toward me as long as I was in view. I did my best to speak to her, even though the mom wheeled past me at no less than the speed of light. I resisted the urge to chase the mom down and tell her its okay - I don't mind and secretly I pray that Ivey has those same homecoming queen ambitions about her someday.

On Thursday I ran to Pier One to pick up a cover for a director's chair. Knox accompanied me. As we entered the store five men were sitting in chairs, all of which were handicapped (mentally). I smiled and spoke to them; Knox paid them no attention (nothing unusual in this child's eyes). As Knox and I were circling a stand of candles, I watched the next customer enter the store, curious. The lady walked in looked at the men and her eyes dropped directly to the floor. She was not embarrassed, just uncomfortable. Why is that?

So for the past week, for some reason Ivey turning one really made me hone in on this, I have been debating what Ivey wants out of her future. Here's the kicker - She can't tell me and I can't read her mind.

How should we go about preparing Ivey for her future? How aggressive should we be? Which path should we take? How often should we push? Where should we begin?

I devised a plan.

Step one:
I took Knox and Walker to the library on Friday. No matter what Matt and I do for Ivey or what plan we devise, Knox and Walker will teach her far better than we ever will. We found one book about horses in braille (of course we have no idea how to read it, but it has HORSES!) and cards with the alphabet in braille. The boys were excited. They have no idea that they will develope a talent that most people do not possess. They will teach Ivey. There are specialists out there, but her brothers have a special touch that does not require years of study - they love her and she knows that they are 'different'.

Step two:
Ivey’s therapies are becoming more aggressive. Ivey has speech therapy once a week. For a year now I have kept physical therapy very limited. I also kept Georgia Pines at bay. It was all too much for Ivey. Her viability and growth trumped. Now Ivey is ready. In the past year, I have also asked around and observed other families with special needs. All families are individualized and do what they deem is necessary for their children. Some families are extremely aggressive...got to fix the broken. Other families could care less one way or the other. There are families that I aspire to model...their children are not broken; there is nothing to be repaired. The children need assistance in accomplishing tasks and learning in a different manner than you or I. The families have found the key to their children’s success - moderation. No matter what task Ivey does or does not accomplish or in what time frame, she will be just fine.

So here is where I stand for now. I think if Ivey could tell me what she wanted out of her future it would be very simple. She would want a lot of love and no boundaries. She needs therapy to help bring out her best, but not to make her something that she is not. In the meantime, I will have to speak for her and make some tough decisions on her behalf. A 'plan is in the works. It is complicated and always subject to change. I am sure that there might be a better way, therapies and activities that would be beneficial for her, but for now we are doing this

Ivey's way and our family's unique way.

Ivey also needs time for LIFE...piano lessons....playing...laughing...family....all of the rest will fall into place in due time....not our time.....but her time.

Ivey hard at work.

Ivey is turning her head toward the sound of the rattle.
Balancing for her brother.
The look of sheer determination.
We are working on her torticollis. She has a tendency to look to her right and down. It is hard for her to turn her head to the left. Not impossible, just harder and....it depends on her mood.
Practice. Practice. Practice. Working on arm strength and opening her hands.

It may look like Ivey has her hand up, but look again. This is a signal for her. Her own sign. I was touching her. Now she wants to know where I went. This is her sign to 'touch me' or 'come back'. Most of the time she does this with both hands up. She seems to do it frequently when her brothers are around. I wonder why? Maybe, just maybe, she knows things come flying out of nowhere when they are around! (Self defense.)