Wednesday, November 16, 2011

Moved from Facebook - 300 Words is Not Enough.

So I've been getting a few requests lately about sharing my experience of raising my princesses and I went through this blog and realized that its missing some of my first posts, which were made to Facebook directly. The next series of posts will be backposts with the dates they were posted on facebook. I hope they help.

It all started because someone asked me to write something to be shared at an event about Autism Awareness. They requested that it be 300 words or less... unfortunately 300 words were just not enough.

Originally posted to a Facebook note - Wednesday, December 30, 2009

The good thing is that I know everything that she’s done all day; the bad thing is that I know everything she’s done all day. My daughter has delayed echolalia, which means that she repeats whatever she hears, only not immediately. It used to be random. She would start talking and say entire dialogues from movies, or what her grandmother told her that day. But ask her if she’d like some waffles and she wasn’t able to say “yes” or “no”.

Now, she has learned to play with toys in “imaginative” play, and can say "yes" and "no" to simple questions, but sometimes she floats back and simply repeats and entire day’s worth of dialogue that she has overheard.

Movie dialogue used to be the only way she could communicate. If she was sad, she would say something “Franklin” would say when he was sad. If she was happy, she would say something “Dora” said when she was happy. She still sometimes repeats dialogue that she has heard, but thankfully now that is not the only thing she can say.

We had a cold night last night and I snuggled under the blankets to sing her to sleep. She likes her back rubbed and so I started to rub and sing. She looked up at me, not completely looking me in the eye, and said “Momma, your hands are cold!”. I beamed at her and we joked about my cold hands. Inwardly I was singing. She has known my name for a while, and has known what “hands” are. She is just learning about “Me, my, You, yours” and she is just learning “Hot and Cold”. Putting all of these together to form a complete sentence with meaning and context has been months in the making. So much practice, scripted play and long hours and my oldest can finally say a sentence. This may not last but I glory in the moment. 5 minutes later I may be greeted with frustration, “jargon” instead of real speech, and a good right hook or two. But for now, this moment is ours. We’ve worked so hard to get it.

My everyday is filled with slaps, screams and tantrums. My daughters are 2 and 4 and both are “on the spectrum”. One is verbal, one is not yet. Both developed normally until about 12 -18 months. Both are constantly frustrated about not being able to properly communicate with the outside world.

Most people, when they see me with my children, say that I have the patience of Job. I don’t, for sure. And it didn’t always seem that way either. But it’s amazing the things you can do because you have to, the things you’ll do for your children.

The struggles we have involve things that most parents do every day. But we do it to an amplified degree. We keep them safe, we teach them, and provide them unconditional love. Keeping them safe is harder, teaching them takes longer, and the love – while no less than the average parent – puts “unconditional” to the test on a daily basis.

Keeping them safe for us is not letting them bite themselves, bang their head on walls or let them run away from you when they are frustrated, because they are not aware of the world around them and may get lost.

Teaching them for us, is showing them for the (literally) 200th time how to do “simple” tasks, like sit in a chair, with patience and love in a way that they are never allowed to fail and become discouraged.

Unconditional love for us is ignoring when your child bites or slaps you and immediately responding with a hug and a kiss when she stops.

In our house, we call them “The Hurricanes”, “The Divas”, “The Ladies” – all characteristics that they posses for sure.

The Hurricanes, because you always know when they are around - everything is a mess. The Divas, because everything must be a certain way or tantrums ensue. The Ladies, because they are indeed little ladies who like frills, cuddles, kisses, feather boas and pretty shoes.

Life is harder for them than it should be. All we can do is help to make it better.

No comments:

Post a Comment