Posts
It was a good day. I rolled with the punches. I"ve got to stop staying up like this. Going to be early (11pm) is aversive and so is waking up at 7am when I've gone to bed at 2am, 5 nights in a row. It's not a preferred activity.
Today is my brother's 47th birthday. I"m so proud of him. He's been sober for 25 years. He loves his nephew but just can't wrap himself around his energy sometimes. AND....the more tired C is, the more wound up he gets..... Chinese food, buffets and 7:00pm. Intresting combo. Try a GFCF diet there.........
This week, C happened to be listening to country (Toby Keith - I want to talk about Me and Alan Jackson - Chatahoochee); dancing and singing. It was really cute. I send out a text regarding both songs (a day apart) and I get a text from my brother; #1 "God, I'm kidnapping my nephew when I get back from San Antonio and indoctrinating him...." #2 (after Alan Jackson) "Ya, know, when I hear about my nephew's musical choices, I get more disheartened by the minute.....Hey, maybe there's a country song in there somewhere..." Atleast (for Uncle Rich's sake) C still likes "Werewolves" of London.
Well, we were at the sink again today. I just don't get it. I try and show him how to do stuff at the sink (rinsing a few dishes I may wash by hand - maybe I"m choosing the wrong time; don't know) and all he can zero in on is turing the water on, watching it be poured, dumped, filled, drained, bubbled, squirted, etc.
At one point today, he was spitting!!!???? What is that? I know he was bored. Poor guy. After loosing so much sleep this week, we have been toast for him and just laid around. Not motivated to do much of anything. So, he would get into mischief.....so, back to the schedule and choosing activities for the day.
Ahhh. life can be nuts sometimes.
Well, I"m off for the night. Have to get some sleep so I"ll make sense tomorrow.
Friday, July 9, 2010
Thursday, July 8, 2010
Watching Autism is a World
Well, it has been so long since I've been here. I couldn't find this for the longest time (ADD and being absent minded kicked-in). BUT, the desire to write never left.
I checked out a dvd out of the library; Autism is a World. It was done by CNN on a woman named Sue Rubin. She is 26. Until she was 13 she was believed to be retarded. Through a series of events, she has been able to use a communication device and now is attending college.
That is the definite upside. She has a wonderful family (they have always included her and never treated her different) a full life (spiritual - Jewish, social, mental), great care-takers and is very bright. On the more difficult side (I don't know any other way to put it; forgive me Kathie Snow - trying to remember people first language); she has severe behavior issues, doesn't speak (virtually non-verbal) and has other physical difficulties.
I see triumph and pain. What struck me the most was how she uses water to calm down. (Let me back track a little) She carries 2-3 spoons with her at all times in her left hand. She even says she doesn't know why, she just has to. When she needs to "get away," she will go to the sink, fill it slightly, letting the water trickle and fill the spoons and dump them out. It's her way of slipping into her world. Feeling a "unusual comfort" (to people outside of her world) in doing this activity. She said many don't understand. They don't try to slip inside her world and understand. I wanted to cry.
I thought, is this what happens with C when he plays with water? Am I not trying to understand where he is coming from, why he does it, why he almost can't leave it alone? Why elevators are so intriguing for him and he could play with them 24/7 given the chance. Why numbers, red/green/yellow lights strike him dead in his tracks sometimes? Stand stock-still until they change.
Why? This is so torturous. I know that God is with me, has given me so much but I see this and I"m scared sometimes. What will become of him? How will he change? Will he change enough? Will he be able to communicate if someone hurts him? I don't know. I"m frightened. This so scared me. What if C slips off into this world? I don't know. It's just scary. Will he have to have 24/7 care someday? I don't know. Will he needs some help? Will he always need me? What is to become of him? How will he handle college? Puberty? Life in general? Who will take care of him? How will he get through?
I want answers. I want it all laid out in front of me and not have to worry along the journey or trust. I want it here and now. To know all is okay. I want to see the future (to a certain extent).
I"m so scared sometimes. It gets to me. Heaven help me. Heaven can only help me. Psalm 4:8 " I will lie down in peace and sleep for you O, Lord; make me dwell in safety." I have to stand on that or I will drown in despair and loose all hope.
I just want to understand him (C) and give him the best possible life. Not always be forcing him to my way of understand but celebrating who he is, why he is the way he is and how he understands things. To join him in his world, so to speak. How to see things from his perspective.
It's so hard. So many things so little time. BUT, there is always hope. Always a silver lining. Always God handing you a bit of help from an angel, a friend or HIS direct hand; holding, guiding, loving. Loving us despite our foibles. Bless Him and Heaven help me today.
I checked out a dvd out of the library; Autism is a World. It was done by CNN on a woman named Sue Rubin. She is 26. Until she was 13 she was believed to be retarded. Through a series of events, she has been able to use a communication device and now is attending college.
That is the definite upside. She has a wonderful family (they have always included her and never treated her different) a full life (spiritual - Jewish, social, mental), great care-takers and is very bright. On the more difficult side (I don't know any other way to put it; forgive me Kathie Snow - trying to remember people first language); she has severe behavior issues, doesn't speak (virtually non-verbal) and has other physical difficulties.
I see triumph and pain. What struck me the most was how she uses water to calm down. (Let me back track a little) She carries 2-3 spoons with her at all times in her left hand. She even says she doesn't know why, she just has to. When she needs to "get away," she will go to the sink, fill it slightly, letting the water trickle and fill the spoons and dump them out. It's her way of slipping into her world. Feeling a "unusual comfort" (to people outside of her world) in doing this activity. She said many don't understand. They don't try to slip inside her world and understand. I wanted to cry.
I thought, is this what happens with C when he plays with water? Am I not trying to understand where he is coming from, why he does it, why he almost can't leave it alone? Why elevators are so intriguing for him and he could play with them 24/7 given the chance. Why numbers, red/green/yellow lights strike him dead in his tracks sometimes? Stand stock-still until they change.
Why? This is so torturous. I know that God is with me, has given me so much but I see this and I"m scared sometimes. What will become of him? How will he change? Will he change enough? Will he be able to communicate if someone hurts him? I don't know. I"m frightened. This so scared me. What if C slips off into this world? I don't know. It's just scary. Will he have to have 24/7 care someday? I don't know. Will he needs some help? Will he always need me? What is to become of him? How will he handle college? Puberty? Life in general? Who will take care of him? How will he get through?
I want answers. I want it all laid out in front of me and not have to worry along the journey or trust. I want it here and now. To know all is okay. I want to see the future (to a certain extent).
I"m so scared sometimes. It gets to me. Heaven help me. Heaven can only help me. Psalm 4:8 " I will lie down in peace and sleep for you O, Lord; make me dwell in safety." I have to stand on that or I will drown in despair and loose all hope.
I just want to understand him (C) and give him the best possible life. Not always be forcing him to my way of understand but celebrating who he is, why he is the way he is and how he understands things. To join him in his world, so to speak. How to see things from his perspective.
It's so hard. So many things so little time. BUT, there is always hope. Always a silver lining. Always God handing you a bit of help from an angel, a friend or HIS direct hand; holding, guiding, loving. Loving us despite our foibles. Bless Him and Heaven help me today.
Subscribe to:
Posts (Atom)
