Friday, January 3, 2014

Love for the Special Needs Mom

Life will throw you curve balls, but that doesn't mean they are all bad. Curve balls are one of the things that keep life interesting, and sometimes difficult. How boring it would be to live constantly on the straight and narrow anyway, right?

Here's one of my curve balls...
This is Lily.
At 2 years old we found out that this non-talking, goofy, little bundle of attitude has Childhood Apraxia of Speech. I know none, or very very few of you, know what that is.

Childhood Apraxia of Speech is a motor disorder that affects a child's ability to talk. It is not a mental disorder. Mentally, they know exactly what they want to tell you. Lily still often slows down her speech and will attempt to act out what she is trying to tell me, because she knows the words, and her mouth just isn't letting her say them. I'm sure you can imagine the frustration of knowing exactly what you want to tell someone but no matter how many times you try it won't come out right. Picture thinking in English but whenever you open your mouth it call comes out in Klingon.

Because of this frustration Lily would (and still does at times) have fits out in public. Something every special needs parent has to deal with, sometimes on a regular basis. Remember when I asked you to imagine the frustration of not being able to tell someone what you need? Of knowing what you want to say and it never coming out right? Now picture for moment that you are 2 or 3 years and trying to tell your mother what you want to eat at a restaurant. You attempt to say it over and over again and she is still staring at you with that confused look, telling you that she still doesn't have an earthly clue what you are trying to say. And if you don't get this information across to her she is going to get you something you won't want to eat. (Which is a HUGE deal because many special needs children are very picky eaters) Would you be perfectly calm?

NO! You wouldn't! That's like telling the waiter you want a salad and every time he repeats the order back to you he says you want a steak, you'd get pretty upset with that waiter, huh? And I doubt you will be talking to him in a nice calm voice after he tells you for the third time that you want a steak.

Special needs children are not bad. They are not stupid. They do NOT have bad parents, in fact they have very devoted and hard working parents that likely go through things in a day you can't even imagine.

What they ARE is misunderstood.

So please... the next time you are in a restaurant, toy store, department store, anywhere... and you see that mom trying to calm down her child who is in the middle of a four alarm fit, do not judge her. Do not judge her child.

You don't know what curve balls life has given them.

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