Bill and I are weird. We've decided this after watching a Special Needs basketball game where parents - mind you parents who have to help their child get dressed - yell at refs and coaches!!!!! LET'S GET SOME PERSPECTIVE PEOPLE!!!!!! Seriously - you have to zip your child's coat - a child who is at leas 10 years of age and you think that it's really worth your energy to yell at a coach for not playing your child more???
Bill and I also cheer for both teams - it's not like we made a pact or something - it just happens. If you really watch the game and see the intensity in their faces - that just running up and down the court is a BIG deal to them - you HAVE to cheer! I wonder - where is the compassion? Where is the camaraderie? I mean - we, as parents are all in this together. Aren't we THRILLED that there IS a Special Needs basketball team? Bill and I are. We're THRILLED with the coaches - who are young adults who could be doing a LOT of things on a Sat afternoon than this. Sure, they get paid - but you know it's not NEAR what the effort demands.
I'm embarrassed. A LOT. I'm embarrassed to be a Special Needs parent - and it's not the kids that embarrass me - it's the adults and I feel ashamed for their actions. Quite the same way I feel ashamed to be a Christian when Pat Roberts opens his mouth and has the audacity to give REASON to a HUGE tragedy the way he did.
The crazy thing is - a Special Needs person would no more yell at a Ref or a coach than Christ would blame God for Haiti. I question? Where are the camera's? I mean, we're surely on Candid Camera or Punked - right??? I mean - it's CRAZY what goes on in day to day life.
So Bill and I laughed our "we're sorry you're so pathetic" laugh that we share a lot lately. We cheered for our little "Brick" who stands - and I mean STANDS near the top of the key and waves to the crowd or tells the others what they should do. We cheer for the other team and tell the people in front of us how cute their son's smile is. We stand as the cheerleaders from the other team - one who is in a wheel-chair, get up and do a cheer for the other team. We joke with the coaches afterwards and tell them to do a shot for us - cause you KNOW after dealing with those parents they HAVE to unwind somehow. We shake our heads on the way home and try and teach Jack how very lucky he is to have a body that works correctly with his brain and how proud we are of him because he helped Sally during practice. And mostly we wonder if the world has gone mad. We wonder how it is that we have come through all this with the humor we possess and then we keep keeping on.
Life is hard enough with Sal (and Jack) to carry all that ANGER. My back isn't strong enough. But I have to admit to feelings of wanting to cross the court - call time out - and shake the CRAP out of the parents that are IDIOTS! The restraint I've shown is amazing. :-)
Saturday, January 30, 2010
Monday, January 18, 2010
Some More Time
Things have really been speeding along lately. Sal has swim club on Monday night, Jack has basketball practice on Tuesday night, Sal has Social Club and basketball games on Saturday and Jack has basketball games on Sunday. In between we have the usual homework and working on mult tables and subtraction and Sal's general upkeep.
:-)
Swim club is SO funny. I have NEVER seen anyone kick SO hard and really go no where - I really mean that - she travels no where. But she's smiling ALL the time! It is SO cute. Those squinty eyes all squished into her goggles, her little hands coming out of the water every so often as if doing a high five and her legs making a HUGE wake. :-) Her coaches love her so much. They all come up and talk to her before and after. I love the Park District staff. I know it's crazy but I always fear loosing such good people. I'm as hateful of change as Sal is.
Sally went to the dance at Humphrey last Friday. She had a GREAT time. As she was getting in the truck she told me "I threw pies". What???? My first question was "were you supposed to?" :-) I guess there were games there too and one of them was throwing pies at the Principal. She hit him twice, she said. :-)
Jack is becoming more and more vocal (nastily) with Sal and his tolerance is VERY low. I'm hoping it's because we haven't been outside playing lately. We decided he needs to be limited on the computer and his DS.
My sister is still going one step forward and 5 back. She has to force feed Mike and make sure he's drinking enough (or he'll end up in the hosp again). She says he's so mixed up sometimes. Last weekend as she quizzed him about the name of his sons and their wives and kids he replied "Jack" many many times. :-) Like I've always said "It's all Jack, all the time" :-) It's hard to hear on the phone. You just want to take it all away from them.
:-)
Swim club is SO funny. I have NEVER seen anyone kick SO hard and really go no where - I really mean that - she travels no where. But she's smiling ALL the time! It is SO cute. Those squinty eyes all squished into her goggles, her little hands coming out of the water every so often as if doing a high five and her legs making a HUGE wake. :-) Her coaches love her so much. They all come up and talk to her before and after. I love the Park District staff. I know it's crazy but I always fear loosing such good people. I'm as hateful of change as Sal is.
Sally went to the dance at Humphrey last Friday. She had a GREAT time. As she was getting in the truck she told me "I threw pies". What???? My first question was "were you supposed to?" :-) I guess there were games there too and one of them was throwing pies at the Principal. She hit him twice, she said. :-)
Jack is becoming more and more vocal (nastily) with Sal and his tolerance is VERY low. I'm hoping it's because we haven't been outside playing lately. We decided he needs to be limited on the computer and his DS.
My sister is still going one step forward and 5 back. She has to force feed Mike and make sure he's drinking enough (or he'll end up in the hosp again). She says he's so mixed up sometimes. Last weekend as she quizzed him about the name of his sons and their wives and kids he replied "Jack" many many times. :-) Like I've always said "It's all Jack, all the time" :-) It's hard to hear on the phone. You just want to take it all away from them.
Saturday, January 02, 2010
New Year!!!?????
Day number 2 - doesn't seem that different. But then again it does. I've had a realization this week. My sister and I were commiserating on the critics in our lives who, without even being close to us, feel they know better how we should act or what we should say.
We both kind of feel like "when you change your loved one's soiled undies on a daily basis - then you can talk to us", :-) So it got me to thinking.... It's always "family" that feel they can judge us like this. Is it because THEY can't fathom the idea of us being able to handle this? Do we not fit the mold they've made for us? Are we stronger than they've ever given us credit for? See, my theory is that they have placed us in a role (we all do it) and usually it is a role of "much less than" their role and now, suddenly or over time, they can't see us lower than they are - the way they were so comfortable in seeing themselves. Sometimes being around people that *you* feel are *more than you* is uncomfortable because you have to look at yourself and maybe they're not real happy with themselves??? I just say this because I know when I talk to people who have a lot of energy it makes me feel like a slug because I feel like I don't do anything. I think this happens to the older of the siblings. They have placed you in a role of always needing them. Of you never really amounting to much - because you were such a pain in the butt as a kid. I've always said - I could cure cancer tomorrow but I'd always be "Monster" to my siblings - the kid who was always in trouble and got bad grades. :-) And then again - I'm way off and some people are just nasty for the sake of being nasty. :-)
So, Sally said to me yesterday "Do I have to be a teenager?" :-) We were talking about what would be happening this year and such. We also got into a conversation about wishes - and what each kid would wish for. Jack wished for more wishes (big surprise there) but Sal wished that EVERYONE would have a wish! Awww - is that not sweet. :-)
The Holidays have been tough on her. It's an anxious time for all kids but for the Auti's of the world - it's even more crazy and then there's the whole "that was it?" let down that I think we ALL experience.
My brother-in-law has had some set backs. He went to surgery over the holidays and it all went well, BUT he decided he wasn't doing rehab at the hosp so they took him back to the nursing home. He went to the ER over the weekend and at one time it was a very touchy 24 hours. He has recovered and is prob going back to the nursing home on Monday. My sister is really having a rough time! It just seems like one tiny step forward and 4 huge steps back - ALL the time. Seems like she's getting called for all sorts of stupid reasons. His attitude is the WORST. Not that he doesn't deserve to be a butt head - but he had been much better - still a pain in the arse - don't get me wrong - he's still Mike. But this person is SOOOO bad. I wish he'd do therapy at the hosp - I think because *they* work with people like that MUCH more than the N Home they would prob be able to recognize what attitude was "normal" and what was meds, diet, etc. I worry about both of them. It's very hard to be away from everything - but I'm sure it's hard to be there too. You want to just wave a wand and make it all better.
We both kind of feel like "when you change your loved one's soiled undies on a daily basis - then you can talk to us", :-) So it got me to thinking.... It's always "family" that feel they can judge us like this. Is it because THEY can't fathom the idea of us being able to handle this? Do we not fit the mold they've made for us? Are we stronger than they've ever given us credit for? See, my theory is that they have placed us in a role (we all do it) and usually it is a role of "much less than" their role and now, suddenly or over time, they can't see us lower than they are - the way they were so comfortable in seeing themselves. Sometimes being around people that *you* feel are *more than you* is uncomfortable because you have to look at yourself and maybe they're not real happy with themselves??? I just say this because I know when I talk to people who have a lot of energy it makes me feel like a slug because I feel like I don't do anything. I think this happens to the older of the siblings. They have placed you in a role of always needing them. Of you never really amounting to much - because you were such a pain in the butt as a kid. I've always said - I could cure cancer tomorrow but I'd always be "Monster" to my siblings - the kid who was always in trouble and got bad grades. :-) And then again - I'm way off and some people are just nasty for the sake of being nasty. :-)
So, Sally said to me yesterday "Do I have to be a teenager?" :-) We were talking about what would be happening this year and such. We also got into a conversation about wishes - and what each kid would wish for. Jack wished for more wishes (big surprise there) but Sal wished that EVERYONE would have a wish! Awww - is that not sweet. :-)
The Holidays have been tough on her. It's an anxious time for all kids but for the Auti's of the world - it's even more crazy and then there's the whole "that was it?" let down that I think we ALL experience.
My brother-in-law has had some set backs. He went to surgery over the holidays and it all went well, BUT he decided he wasn't doing rehab at the hosp so they took him back to the nursing home. He went to the ER over the weekend and at one time it was a very touchy 24 hours. He has recovered and is prob going back to the nursing home on Monday. My sister is really having a rough time! It just seems like one tiny step forward and 4 huge steps back - ALL the time. Seems like she's getting called for all sorts of stupid reasons. His attitude is the WORST. Not that he doesn't deserve to be a butt head - but he had been much better - still a pain in the arse - don't get me wrong - he's still Mike. But this person is SOOOO bad. I wish he'd do therapy at the hosp - I think because *they* work with people like that MUCH more than the N Home they would prob be able to recognize what attitude was "normal" and what was meds, diet, etc. I worry about both of them. It's very hard to be away from everything - but I'm sure it's hard to be there too. You want to just wave a wand and make it all better.
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