Tonight was the game between the Lions Club and the JBSRA (Special Rec) kids. They do this every year. The Lions Club is a big contributor to Special Needs. The guys show up and play a game against our Jr and Sr team and then they feed everyone. :-)
The game began with one of the Lion's members singing the National Anthem. About half way through one of the guys from the Sr team went and stood by the Lion's member that was singing and put his arm around him as he finished the song. I don't think there was a dry eye in the house.
The game is always a lot of fun because the older Special Needs "kids" (a lot are adults) help the younger ones and really feed them the ball. The refs always call a lot of fouls on the Lions and not as many on our guys. ;-) It's just a great time and it's just FULL of celebration - there is absolutely NOTHING in this world that looks as good as a special needs kid that has just done something like make a basket or in Sal's case, inbound a ball. Their whole body lights up. :-)
It's very hard for me to watch and not just bawl my eyes out in happiness. There's just SO much happiness in that gym. What's also kind of cool is we usually draw a crowd from the other gyms and they all stand around and watch. The Sr team is really VERY good. They will be traveling downstate again this year to defend their gold title in Spec Olympics. Bill and I are very tempted to take the kids in March and go watch. But, being in Bloomington - it's expensive to get a room and food and all and we think it might be best to skip it. It's such a good time, though to watch those guys.
After the game the Lions served hotdogs and chips and soda and the kids all sat around and did their thing. :-) It's so neat to see them all talking together. These programs do SO much more than let them play basketball - there's SO much social practice and life skills there. So we said goodbye to our basketball coaches for the year. Of course we see them again at Social Club. :-)
Tuesday, February 22, 2011
Sunday, February 20, 2011
Stressed
It's been a stressed weekend. I don't tend to realize how stressed I am until it's over. I think I go on auto-pilot. I did this during labor too. Almost like you're in shock. Anyway - when I get home and the day is "over" or it's the next day like now - I feel wrung out and very tired and like my nerves are standing on end. And maybe because it's not "over". She's almost more keyed up when it's over. The screechy voice is out in full force. She can't be still at all. She's all over the place. I really wonder what goes on in her brain when she's like that.
Back to the Swim Meet. Sal got 3rd in her heat. She did 50 meters freestyle this time. Her first time to go down and back in the pool. She did REALLY well. I'm so proud of how she swims. She smiles and almost waves as she does it. :-) She LOVES the water. She chose Swim Meet over Social Club this weekend. As we were driving home from the Swim Meet she said "They went to Social Club without me, didn't they?" "Yes, they did," I said. "They miss me. " Sally said. "I'm sure they did, Sal." :-)
Grandma almost cried on the phone when we told her. Grandma doesn't swim and is scared stiff of the water - swimming lessons were the ONLY thing she put me in. It was THAT important to her. So for Sal to conquer the water is a big deal to her. *I* love the water and am SO pleased that Sal has followed. When she goes to practice, she swims the ENTIRE hour of practice. I'm always amazed at her stamina.
Water IS the great equalizer in Special Needs. A LOT of the kids that CAN'T walk, or talk, or do anything "typical" CAN swim. It's SO cool to see them lowered into the water in a chair or see them take the lead when their hands cant move - but those legs can kick like hell. SO much we take for granted.
I got a letter this week from a friend that asked about what Sal will do when we're gone. And I've said here before that I pray that I will live one day longer than her. Sal's ok financially and hopefully will be able to live on her own with minimal help (that's my goal) and hopefully hold a job. The government provides for 100% insurance (SSI) for her when she reaches 18. The thing is she can only hold $2000 in assets. So Special Needs families have to set up a Special Needs Trust. It is like a business in that it has it's own federal ID number and is separate from Sal's SSN . Ours will be funded when the last one of us dies. We have "2nd to die" life insurance. My Mom and Dad have also willed money to Sal and made it to go to the trust. It was a whole hairy mess - we had to have a special lawyer - not all lawyers are acquainted with Special Needs Trusts. But our Financial Advisor (who also happens to be my Mom and Dad's) worked with our lawyer and got it all straight for us. It's such a pain in the ass. Now I just have to watch any salary from any jobs she gets and make sure we don't go over the amount.
We have named a bank as the executor of this trust. They will have say over what Sal will spend money on AND they will account to shareholders of how the trust is doing. It *sounds* more complicated than it is. I've listed out what I want for her funeral and what I think she should have as far as wants. We always joke that Jack would be a LOT nicer to her if he knew how much she'll be worth someday. :-)
Special Needs is always an adventure from Dr's visits to playground play to even future planning. Nothing is every *easy*. I remember how it FREAKED me out so much at the beginning. I mean EVERYTHING has to be planned and thought through. I'm not as freaked as I used to be.
In Culver's yesterday (our treat after ANY sports function) Jack and Sal were at each other and Sal screamed - just a short burst - nothing major. A lady looked at me and said "He screams like a girl"
"That's because she is," I said "And she screamed because she has autism and isn't always good at minding her social skills." ( I wanted to add ; like you obviously aren't so good at social skills either - because we usually think before we speak) :-) I have to admit - sometimes I LOVE to put people in their place. I LOVE to see the dropped mouth and stupid look. I want so bad to say "yes, I know you were judging my parenting and I know you were thinking you were superior - but maybe you need to back off there, sparky"
:-) Granted, Sal does look like a boy - the short hair the non-girly clothes, I get that a lot. It was the look on the lady's face - that *she * could do better. The "um, um, I'm sorrys" are always great. :-) I have to admit - sometimes I'm catty. :-) But it's usually warranted. :-)
2 days off of school this week. ugghh. I was HOPING it was going to be nice outside. Doesn't look like it. Means Sal and I will prob be sick of each other by Wednesday. :-) I know I get on her nerves as much as she does me. And maybe that's not all bad. I think that's a "normal" daughter thing. :-)
Back to the Swim Meet. Sal got 3rd in her heat. She did 50 meters freestyle this time. Her first time to go down and back in the pool. She did REALLY well. I'm so proud of how she swims. She smiles and almost waves as she does it. :-) She LOVES the water. She chose Swim Meet over Social Club this weekend. As we were driving home from the Swim Meet she said "They went to Social Club without me, didn't they?" "Yes, they did," I said. "They miss me. " Sally said. "I'm sure they did, Sal." :-)
Grandma almost cried on the phone when we told her. Grandma doesn't swim and is scared stiff of the water - swimming lessons were the ONLY thing she put me in. It was THAT important to her. So for Sal to conquer the water is a big deal to her. *I* love the water and am SO pleased that Sal has followed. When she goes to practice, she swims the ENTIRE hour of practice. I'm always amazed at her stamina.
Water IS the great equalizer in Special Needs. A LOT of the kids that CAN'T walk, or talk, or do anything "typical" CAN swim. It's SO cool to see them lowered into the water in a chair or see them take the lead when their hands cant move - but those legs can kick like hell. SO much we take for granted.
I got a letter this week from a friend that asked about what Sal will do when we're gone. And I've said here before that I pray that I will live one day longer than her. Sal's ok financially and hopefully will be able to live on her own with minimal help (that's my goal) and hopefully hold a job. The government provides for 100% insurance (SSI) for her when she reaches 18. The thing is she can only hold $2000 in assets. So Special Needs families have to set up a Special Needs Trust. It is like a business in that it has it's own federal ID number and is separate from Sal's SSN . Ours will be funded when the last one of us dies. We have "2nd to die" life insurance. My Mom and Dad have also willed money to Sal and made it to go to the trust. It was a whole hairy mess - we had to have a special lawyer - not all lawyers are acquainted with Special Needs Trusts. But our Financial Advisor (who also happens to be my Mom and Dad's) worked with our lawyer and got it all straight for us. It's such a pain in the ass. Now I just have to watch any salary from any jobs she gets and make sure we don't go over the amount.
We have named a bank as the executor of this trust. They will have say over what Sal will spend money on AND they will account to shareholders of how the trust is doing. It *sounds* more complicated than it is. I've listed out what I want for her funeral and what I think she should have as far as wants. We always joke that Jack would be a LOT nicer to her if he knew how much she'll be worth someday. :-)
Special Needs is always an adventure from Dr's visits to playground play to even future planning. Nothing is every *easy*. I remember how it FREAKED me out so much at the beginning. I mean EVERYTHING has to be planned and thought through. I'm not as freaked as I used to be.
In Culver's yesterday (our treat after ANY sports function) Jack and Sal were at each other and Sal screamed - just a short burst - nothing major. A lady looked at me and said "He screams like a girl"
"That's because she is," I said "And she screamed because she has autism and isn't always good at minding her social skills." ( I wanted to add ; like you obviously aren't so good at social skills either - because we usually think before we speak) :-) I have to admit - sometimes I LOVE to put people in their place. I LOVE to see the dropped mouth and stupid look. I want so bad to say "yes, I know you were judging my parenting and I know you were thinking you were superior - but maybe you need to back off there, sparky"
:-) Granted, Sal does look like a boy - the short hair the non-girly clothes, I get that a lot. It was the look on the lady's face - that *she * could do better. The "um, um, I'm sorrys" are always great. :-) I have to admit - sometimes I'm catty. :-) But it's usually warranted. :-)
2 days off of school this week. ugghh. I was HOPING it was going to be nice outside. Doesn't look like it. Means Sal and I will prob be sick of each other by Wednesday. :-) I know I get on her nerves as much as she does me. And maybe that's not all bad. I think that's a "normal" daughter thing. :-)
Sunday, February 06, 2011
Rough Times
When Sal was a baby and she would wake me in the night I often sat there with her with a real wonderment of how I could love something so much that interrupted my sleep and that I didn't even get upset about it. That always amazed me that I never felt angry or ticky at her for getting me up time after time after time.
I thought back on this time tonight as I was once AGAIN showering her off because she had had an accident. Those days are gone. She can bring me to tears very easily - and I know that it really is no fault of her own. She can't help it today anymore than she could as a baby - but it's been 13 years, she DEMANDS now and she's NOT little. :-) But the wild thing is - she's still just as innocent.
Oh, for a look into that mind. I'd give anything - my kingdom for a look into her mind (and a coffee pot that pours correctly) :-)
My Mom called today and told me about a friend she was concerned about who's daughter doesn't engage in conversation. (She's has aspergers syndrome). My first thought was "and the problem is???" :-)
I had had a day (WEEK) of non-stop talking. Non-stop questions. I opinioned that we could bump the girls together and see if they could get a little of the other. :-) Everyone has their own cross to carry. Mine's just a little heavy tonight.
We had planned to go to friend's house and autism, once again, got in the way. And as I sit here a little irritated that I didn't get to go (feeling like Jack who pouts and stomps) :-) I also have to laugh at the girl who sits on the couch after being bathed and hair washed and teeth brushed saying "I love COPS" as she watches the show. ;-) And once again I am humbled by this crazy creature that evokes so many emotions in me. This person who is such a mystery yet such a constant. Someone who seems to know what I'm thinking so much that it's scary yet cannot even blow her own nose. :-)
I thought back on this time tonight as I was once AGAIN showering her off because she had had an accident. Those days are gone. She can bring me to tears very easily - and I know that it really is no fault of her own. She can't help it today anymore than she could as a baby - but it's been 13 years, she DEMANDS now and she's NOT little. :-) But the wild thing is - she's still just as innocent.
Oh, for a look into that mind. I'd give anything - my kingdom for a look into her mind (and a coffee pot that pours correctly) :-)
My Mom called today and told me about a friend she was concerned about who's daughter doesn't engage in conversation. (She's has aspergers syndrome). My first thought was "and the problem is???" :-)
I had had a day (WEEK) of non-stop talking. Non-stop questions. I opinioned that we could bump the girls together and see if they could get a little of the other. :-) Everyone has their own cross to carry. Mine's just a little heavy tonight.
We had planned to go to friend's house and autism, once again, got in the way. And as I sit here a little irritated that I didn't get to go (feeling like Jack who pouts and stomps) :-) I also have to laugh at the girl who sits on the couch after being bathed and hair washed and teeth brushed saying "I love COPS" as she watches the show. ;-) And once again I am humbled by this crazy creature that evokes so many emotions in me. This person who is such a mystery yet such a constant. Someone who seems to know what I'm thinking so much that it's scary yet cannot even blow her own nose. :-)
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