Ava is functionally deaf. It hit me today.
Functionally deaf. Functionally deaf. Functionally deaf. (i.e. Can you hear me? Yes, but I do not understand ANYTHING you say.)
Will Ava ever get over this? Will she ever have a normal life? Will she ever be able to speak, converse, express and reciprocate language? Will she always be dependent on me - even as an adult?
You know, this autism thing SUCKS - because you do not know. And guess what? NO ONE ELSE DOES EITHER. With autism, EVERYONE generalizes, EVERYONE guesses, EVERYONE has no clue! Even the "experts". NO CLUE.
Insert explicative yourself, this is a G-rated blog. But you get the picture.
And so many parents who are angry, upset, confused. "It's vaccines!" "It's the environment!" "It's toxins!" "It's bad parenting!" "It's old moms!"" It's old dads!" "It's genetic." "It's in-vitro fertilization!" "It's c-sections!" "It's everything!"
But let me tell you something, no one knows for sure.
I look at my daughter and wonder -- will anyone ever know? Will someone PLEASE figure it out? And why, why, why on earth is it IMPOSSIBLE to get her what she needs to possibly overcome this disorder so that her life is not a complete mess later on? So that she does not spend each day in extreme anxiety, fear and discomfort? So that she is not ridiculed, stared-at and avoided? WHY? ANYONE WANNA GUESS? I will tell you -- MONEY! If we had money, treatment would not be an issue. She would be on the road to a typical childhood.
I have a child who is autistic, functionally deaf, with sensory processing disorder, auditory processing disorder, a sleep disorder and apraxia. Where can I go to help her? I mean, REALLY help her -- not some lame attempt to put a band-aid on her until she turns three.
Someone tell me where and how. And I will do it.
Recommend
Comments (5)
Teach her sign language. Even though I can hear and speak... I still find myself signing more often than not with the limited amount of ASL that I know. The movement connects with the words. It isn't even a visual thing so much as it is a movement thing. I have "made up" signs that my husband has caught on to... he knows exactly what I mean by what I'm doing with my hands, even if I can't think of the word for it to save my life. A friend of mine is an ASL interpreter. She half-speaks, half-signs at me all the time... our conversations often won't make sense to anyone else but us. That's ok. My kids know to watch me... I can communicate more with a gesture than I can with words half the time. I have another friend who is deaf... we chat on the computer all the time. We write to each other. I write much more clearly than I talk. I understand written words much more clearly than spoken words.
So... here's what I suggest.
1) Purposefully calm down... relax and accept the fact that you and Ava are going to have to work much harder than a "normal" parent and child to communicate. That is a given... there is no magic pill to fix it. It sucks but the quicker that reality is accepted, the easier things will go.
2) YOU are the expert on your kid. You spend more time with her than anyone else. Get to know her. She is unique. You will find what works... go with your instincts. Pay close attention to every little gut feeling you get, because chances are some of those things are coming from her. Not saying that autistic kids can project their thoughts per se, but you might be surprised at what you can pick up by watching her as you interact with her. Forget the expectations of anything resembling what you're used to calling normal and look for clues to what she is feeling, thinking, or otherwise needing.
3) Play with different things to see what she responds to... Does she respond to music? Does she respond to pictures? Does she respond to vibrations? (I don't really know how to tell you how to test that one... but knowing a few deaf people who can speak, they rely on vibration.) Does she respond to flashing lights? Motion? Find out what gets her attention and use it for all its worth.
4) Don't worry about tomorrow, tomorrow has enough trouble of its own. Concentrate on what you can do today. Ava doesn't need help being an adult right now, she needs help being a child. Focus on loving her and teaching her what she needs today, this moment. Live in the now as much as possible. Right now, she needs to learn to be two years old. Be two with her. Do things with her that two year olds do. Play next to her with toys. Talk to her, even if she doesn't seem to hear or understand. Kids that age are like little sponges. They soak up everything, even if they don't show any signs of comprehension. You might be surprised one day when she speaks her first words as a full sentence.
5) As far as the "experts" go, you're right... most of them are as clueless as the rest of us. The difference between a parent and an expert is that a parent LOVES the child. The "expert" studies the child. Love her. FEEL your love for her when she is around and she will feel it too.
BTW... What I'm trying to say is essentially... meet her on her terms. Learn how she thinks and then teach her to see how the rest of the world thinks. :)
I feel your frustration. But it looks like Carrie has some great suggestions. Hope they help
Enjoy the rest of the weekend
@keystspf@xanga -great advice Carrie :)
---****
NHL
Jersey Woman $ 40
---****
NFL Jersey $ 35
---**** NBA Jersey $
34
---****
MLB Jersey $ 35
---****
Jordan Six Ring_m $36 ---****
Air
Yeezy_m
$ 45
---**** T-Shirt_m
$ 25 ---**** Jacket_m $ 36
---****
Hoody_m $ 50 ---**** Manicure
Set $ 20 ... ...
http://www.shoes2.us/products/AIR-FORCE-ONES-8-s-1.html
http://www.shoes2.us/products/WOMEN-GUCCI-SHOES-48-s-1.html
http://www.shoes2.us/products/WOMEN-JORDAN-SHOES-180-s-1.html
http://www.shoes2.us/products/JORDAN-SHOES-9-s-1.html
http://www.shoes2.us/products/NFL-JERSEYS-150-s-1.html
http://www.shoes2.us/products/MLB-JERSEYS-199-s-1.html
http://www.shoes2.us/products/NHL-JERSEYS-7-s-1.html
http://www.shoes2.us/products/LADY-PURSES-1-73-s-1.html
http://www.shoes2.us/products/SUNGLASSES-AAA-165-s-1.html
http://www.shoes2.us/products/CAPS-172-s-1.html