Lot happening this week. Jack got braces put on Monday - stitches were dissolved and looking good. Sal registered for 7th grade! Jack registered for 4th grade! It's crazy to think of them being so old. *I* don't feel any older. :-)
Tonight both of my darlings are sick. Sal's been having accidents all day and then after registration, Jack complained of a headache and wanted to go to bed. They've both been asleep since 7pm.
It really stinks when they're sick.
Our good friend, Oscar (coach of Sal's basketball and swim team) has had a pretty nasty accident and has been put in a coma to stay for over a month. I don't know a bunch about it - Sandy told me on fb. Just never seems fair. He's a 20 something and has SUCH a good heart. We had the best time with him at State and other tournaments. He is SO good with the kids. He was the one that as he watched Sal do the back float (ALL limbs moved a lot but the body went no where) you could see in his face he was fighting everything not to jump in the pool and push her. :-) Things don't sound good for him at all - but I hope that someone has got the info wrong and he'll be fine.
Jeremy got home from vacation today and Bill is on cloud 9. :-) They're at the shag tonight - I'm the good Mom who stays with the sickies. :-) I'm so glad that Bill has a friend like Jer. It's good for him to get out and kind of download. Jeremy is good for him - even if he's a republican. :-)
The Jubilee starts this week (the Village's fest). We've had talks all year with Jack about why we were not attending Village functions. He's had quite the civics lessons this year. We explained to him that even though Daddy's job would probably never be in jeopardy (he's been there over 20 years) it's the fact that you must stand for what's right. Even if it makes no difference - it makes you able to lay your head down at night and know you did what your head and heart thought was best.
I got absolutely no flack about not getting to ride rides or go to the fest. I'm very proud of the little goober sometimes.
Tuesday, August 17, 2010
Saturday, August 14, 2010
Parents of children with autism: We struggle alone - KansasCity.com
Parents of children with autism: We struggle alone - KansasCity.com
Good article. It IS lonely. And yes, people DO shy away from you - but you learn that it's probably for the best. It's THEM that are missing a pretty fantastic kid.
The thing with Sal is that she's that nursery rhyme. "When she was good she was good and when she was bad, she was horrid." And the horrid part doesn't seem to be able to stop sometimes. It can become a very vicious circle.
I'm to the point that I'm not sure I really want a cure. Who would she be? I love Sal - just the way Sal is. I only wish I could understand the meltdowns more. I wish we could find a cure for the bathroom accidents. I wish she could do more with her hands. But that all makes Sal who she is. She is the TRUE test of love unconditionally. Some people don't pass that test. :-)
It IS exhausting, and I can empathize with the mother that killed her child and then herself. I am by no means excusing that - but I know where she's coming from. I pray every night that I live just one day longer than Sal. And mostly because I don't want her to go through the heartache of loosing me and then being all alone in a world that doesn't quite make sense to her.
I always look to the mothers of the adult special needs. THEY are the real hero's. In those days there was NO info about this stuff - and yes, they were looked down on BIG time! I get those comments - but I just slip one of the business cards I have made up that explain what the problem is. I LOVE the look of shame on their face after they read it. :-)
I also love hearing mothers "complain" about the VERY insignificant things in their lives. Sal has really put things into perspective for me. I also SO appreciate the people that take the time and DO come into our lives. I tend to gravitate towards REAL people who have kind of a dark humor. They seem to "get" me more. They don't gasp if you say how really TIRED you are of your kid. :-) There's not many, believe me. You can't pretend to be something you're not with Sal - she'll call you out. She's like a horse in that way. :-) I think that's why they all seem to gravitate toward her.
Back to the cure thing. I don't know if we'll see it or even if I want to. What I want more is TOLERANCE. It's a fine line - I expect her to do what she can - I expect her to try and hold it together but I want people to be tolerant when she doesn't . Not to treat her as a baby but to expect her to succeed but be ok if she doesn't. Crazy, crazy life and since I know no other - I'm very scared to change it. :-)
Good article. It IS lonely. And yes, people DO shy away from you - but you learn that it's probably for the best. It's THEM that are missing a pretty fantastic kid.
The thing with Sal is that she's that nursery rhyme. "When she was good she was good and when she was bad, she was horrid." And the horrid part doesn't seem to be able to stop sometimes. It can become a very vicious circle.
I'm to the point that I'm not sure I really want a cure. Who would she be? I love Sal - just the way Sal is. I only wish I could understand the meltdowns more. I wish we could find a cure for the bathroom accidents. I wish she could do more with her hands. But that all makes Sal who she is. She is the TRUE test of love unconditionally. Some people don't pass that test. :-)
It IS exhausting, and I can empathize with the mother that killed her child and then herself. I am by no means excusing that - but I know where she's coming from. I pray every night that I live just one day longer than Sal. And mostly because I don't want her to go through the heartache of loosing me and then being all alone in a world that doesn't quite make sense to her.
I always look to the mothers of the adult special needs. THEY are the real hero's. In those days there was NO info about this stuff - and yes, they were looked down on BIG time! I get those comments - but I just slip one of the business cards I have made up that explain what the problem is. I LOVE the look of shame on their face after they read it. :-)
I also love hearing mothers "complain" about the VERY insignificant things in their lives. Sal has really put things into perspective for me. I also SO appreciate the people that take the time and DO come into our lives. I tend to gravitate towards REAL people who have kind of a dark humor. They seem to "get" me more. They don't gasp if you say how really TIRED you are of your kid. :-) There's not many, believe me. You can't pretend to be something you're not with Sal - she'll call you out. She's like a horse in that way. :-) I think that's why they all seem to gravitate toward her.
Back to the cure thing. I don't know if we'll see it or even if I want to. What I want more is TOLERANCE. It's a fine line - I expect her to do what she can - I expect her to try and hold it together but I want people to be tolerant when she doesn't . Not to treat her as a baby but to expect her to succeed but be ok if she doesn't. Crazy, crazy life and since I know no other - I'm very scared to change it. :-)
Friday, August 13, 2010
Friends from the Hood
We all went into Shorewood the other night to meet Allen and his Mom, Mary Ann - who - used to live down the street from Bill and his family when he was growing up. Allen is Special Needs.
I always find it so inspirational to meet people and their families (namely Moms) who did it all BEFORE law 501 and inclusion. BEFORE a lot of the stigma was lifted (it's still there - but not NEAR as bad). I have to say - I was not let down. Talk about neat people!!!!! Mom is divorced (80% of us are who have Special Needs kids) and she raised 3 boys!!!! Talk about cross to bear! :-) I have ONE boy and find it VERY difficult. :-)
Allen is GREAT! Mary Ann did a FANTASTIC job. He's handsome and very well mannered. He has a job and has worked there for over 25 years! It just gives me such great hope for Sal. Boy, if we can get her to where Allen is - DANG! And again - I remind myself he came through the era where we knew SO little. I got some GREAT advice and felt very supported.
What a great night.
I always find it so inspirational to meet people and their families (namely Moms) who did it all BEFORE law 501 and inclusion. BEFORE a lot of the stigma was lifted (it's still there - but not NEAR as bad). I have to say - I was not let down. Talk about neat people!!!!! Mom is divorced (80% of us are who have Special Needs kids) and she raised 3 boys!!!! Talk about cross to bear! :-) I have ONE boy and find it VERY difficult. :-)
Allen is GREAT! Mary Ann did a FANTASTIC job. He's handsome and very well mannered. He has a job and has worked there for over 25 years! It just gives me such great hope for Sal. Boy, if we can get her to where Allen is - DANG! And again - I remind myself he came through the era where we knew SO little. I got some GREAT advice and felt very supported.
What a great night.
Tuesday, August 10, 2010
Vacation Cont.
Monday we went to see Brad and Becky's new house - NIIIICCCEEE!!! We also visited Illini West High School and sat in Mr Gooding's office. I told my kids it was to be the one and ONLY time they would be in a HS Principal's office. :-) He must be pretty good at his job - he has TWO secretaries! :-) So Lincoln and Jack has to part ways. Dang, they had a good time.
Tuesday the girls went to Quincy and bought fabric and stuff for my tee-shirt quilt. I went home thinking I would make it and kind of wound up giving it to Aunt Jill to do. :-) Figure she needs something to occupy her time. She just doesn't have enough to do. :-) We had a really nice time, though.
Wednesday we went to the horse show at the fair. Mary Scott got 3rd in her class (and there were 17!) . Tod and Rachel bought a FEMA trailer and fixed it up to live at the fair for the week. Two of their 4 children show livestock. We hung out there for a while. Rachel amazes me. I thought *I* was patient and tolerant. I can't handle the chaos like she does. What a nice trailer though - until you think about someone called it *home* and not "vacation" for a week.
We always have such a great time with the Perry's. Our kids all get along so well. I hope that continues. Jack got to stay and spend the day with them at the fair while the rest of us went back to Aunt Jill's to get ready for Maddux's birthday party that night.
We picked up Jack from the fair and headed into Quincy. We had to kill a little time before the pizza was ready so we headed over to West Quincy to get gas. Jack was amazed that we went to a whole other state "just to get gas". We also showed him the barge on the side of the road that had floated over when the levy broke in 93. We then picked up the pizzas and headed over to Upper Morman Park. The kids had a GREAT time until..........
Jack fell while playing on the playground and went headfirst into a metal step. Since I've lived with Jack for 9 years now I don't get too shook up when he starts to scream because he is SO dramatic! But the blood was gushing pretty good. We got him laid down on the picnic table and put some ice and pressure on it and let him chill. He fell asleep and the rest of us got into a squirt gun fight where Aunt Jill/Grandma Jill got doused with a whole cup of water. I hung out with Uncle Mike and since he's in a wheel chair - the rule was you couldn't squirt him. :-)
After about an hour I checked his mouth again and got new pink blood. Ok, bleeding that doesn't stop kind of bothers me and so we decided to make a trip to the ER at Blessing Hospital.
As we were checking in it dawned on us that we had been there almost 13 years to the day for Bill's finger that he cut while preparing Brad and Becky's rehearsal dinner.
:-) Jack was a real trooper. He got 4 stitches up on the upper gum and lip. We were in and out in about an hour and a half. We even saw the helicopter land. (the same helicopter that took Uncle Mike to the hosp after his accident).
Thursday was our traditional trip to HARNESS RACING! Ok, I could seriously get addicted to this. I LOVE watching the races and also LOVE betting. We do this thing where - as soon as we get there we go through the book and read all the names and each kid picks who they think will win in each race. Sally got 5/8!!!!! And on one of them she picked a real long shot and got more than $16 (we only bet $2.00 on each race). I picked 2 - Big Daddy Woo Woo (who I bet on last year too) and Natalie - I pick them for things that mean something to me( "Natalie's Nightie" was the play my sister was in this year) . I obviously have NO connection to the universe. :-)
Friday we drove back to Bolingbrook. The ride was HORRIBLE! I think Sal had held back the autism so much that it all just came spilling out! :-) Also we ran into construction so 4 hours quickly turned into 5. Mabel wasn't too keen on coming back either. As we packed up the car she slipped off into the pasture and just didn't listen when we called. :-) Aunt Jill hung back and pretended to not be going anywhere while we took off for Granma's and Granpa's. Mabel came back and Aunt Jill grabbed her and brought her into town. :-) She's been depressed ever since. You can tell - she wants to be a farm dog. :-)
She had the BEST time being out and without a chain ALL week. When we left she got to stay outside and be with the big dogs. :-) When we came home she was ALWAYS ready to come in and get out of the heat. Poor Tiny was really miserable. St Bernard hair is NOT meant to go though IL summer humidity. Aunt Jill lets him in to cool off and he sets up camp in the downstairs bathroom (the tile is so cool there). What's really funny is as you turn into the bathroom to use the facilities here is this HUGE dog just laying there. Sally wanted to know how she could close the door and we had to tell her to just go with Tiny in the way - he doesn't mind.
:-)
Tuesday the girls went to Quincy and bought fabric and stuff for my tee-shirt quilt. I went home thinking I would make it and kind of wound up giving it to Aunt Jill to do. :-) Figure she needs something to occupy her time. She just doesn't have enough to do. :-) We had a really nice time, though.
Wednesday we went to the horse show at the fair. Mary Scott got 3rd in her class (and there were 17!) . Tod and Rachel bought a FEMA trailer and fixed it up to live at the fair for the week. Two of their 4 children show livestock. We hung out there for a while. Rachel amazes me. I thought *I* was patient and tolerant. I can't handle the chaos like she does. What a nice trailer though - until you think about someone called it *home* and not "vacation" for a week.
We always have such a great time with the Perry's. Our kids all get along so well. I hope that continues. Jack got to stay and spend the day with them at the fair while the rest of us went back to Aunt Jill's to get ready for Maddux's birthday party that night.
We picked up Jack from the fair and headed into Quincy. We had to kill a little time before the pizza was ready so we headed over to West Quincy to get gas. Jack was amazed that we went to a whole other state "just to get gas". We also showed him the barge on the side of the road that had floated over when the levy broke in 93. We then picked up the pizzas and headed over to Upper Morman Park. The kids had a GREAT time until..........
Jack fell while playing on the playground and went headfirst into a metal step. Since I've lived with Jack for 9 years now I don't get too shook up when he starts to scream because he is SO dramatic! But the blood was gushing pretty good. We got him laid down on the picnic table and put some ice and pressure on it and let him chill. He fell asleep and the rest of us got into a squirt gun fight where Aunt Jill/Grandma Jill got doused with a whole cup of water. I hung out with Uncle Mike and since he's in a wheel chair - the rule was you couldn't squirt him. :-)
After about an hour I checked his mouth again and got new pink blood. Ok, bleeding that doesn't stop kind of bothers me and so we decided to make a trip to the ER at Blessing Hospital.
As we were checking in it dawned on us that we had been there almost 13 years to the day for Bill's finger that he cut while preparing Brad and Becky's rehearsal dinner.
:-) Jack was a real trooper. He got 4 stitches up on the upper gum and lip. We were in and out in about an hour and a half. We even saw the helicopter land. (the same helicopter that took Uncle Mike to the hosp after his accident).
Thursday was our traditional trip to HARNESS RACING! Ok, I could seriously get addicted to this. I LOVE watching the races and also LOVE betting. We do this thing where - as soon as we get there we go through the book and read all the names and each kid picks who they think will win in each race. Sally got 5/8!!!!! And on one of them she picked a real long shot and got more than $16 (we only bet $2.00 on each race). I picked 2 - Big Daddy Woo Woo (who I bet on last year too) and Natalie - I pick them for things that mean something to me( "Natalie's Nightie" was the play my sister was in this year) . I obviously have NO connection to the universe. :-)
Friday we drove back to Bolingbrook. The ride was HORRIBLE! I think Sal had held back the autism so much that it all just came spilling out! :-) Also we ran into construction so 4 hours quickly turned into 5. Mabel wasn't too keen on coming back either. As we packed up the car she slipped off into the pasture and just didn't listen when we called. :-) Aunt Jill hung back and pretended to not be going anywhere while we took off for Granma's and Granpa's. Mabel came back and Aunt Jill grabbed her and brought her into town. :-) She's been depressed ever since. You can tell - she wants to be a farm dog. :-)
She had the BEST time being out and without a chain ALL week. When we left she got to stay outside and be with the big dogs. :-) When we came home she was ALWAYS ready to come in and get out of the heat. Poor Tiny was really miserable. St Bernard hair is NOT meant to go though IL summer humidity. Aunt Jill lets him in to cool off and he sets up camp in the downstairs bathroom (the tile is so cool there). What's really funny is as you turn into the bathroom to use the facilities here is this HUGE dog just laying there. Sally wanted to know how she could close the door and we had to tell her to just go with Tiny in the way - he doesn't mind.
:-)
Saturday, August 07, 2010
Vacation
So we're home from the big vacation. What a trip. We had such a good time! We stopped in to Granma and Granpa's when we arrived. They *love* to see Mabel - esp Granma - she's a BIG fan. Ha ha ha. We were served fresh corn on the cob and BLTs with Ts from the garden. It was very good. We visited a while and heard about Gma's gun. Yes, my 81 year old father bought my 79 year old mother a Red Ryder BB gun. She wants to scare the blackbirds away. I'm not sure who is crazier.
When we got to Aunt Jill's we have to 'catch up' with all the animals. It was raining a little and Tiny didn't want to come out of the garage - he's very delicate you know. :-) Aunt Jill is housing a horse (Kitkat) and a mule (DR) for a neighbor in exchange for mowing of the fields. The mule is really kind of cool. He loves to chase Mabel. :-)
Bob Cat and Miss Kitty came out to greet us, but Booger stayed in the red barn and from what I understand only comes out to meow when he's being fed and then hides back in the shadows. My sister has some real strange animals. :-)
Brad and Becky and the boys came out and we had Jill's world famous lasagna. Sally has asked me over and over to make that (and you know how well Sal talks sometimes - lasagna doesn't sound like lasagna when she says it). Lincoln stayed overnight. Lincoln and Jack are definitely cut from the same cloth~ :-)
Saturday was Kid Day at the fair - which means arm band day and they can ride rides from 1-5. As always it was the HOTTEST, STICKIEST day, but we packed up, found a halfway un-muddy parking place and headed in. They had a BLAST! Rachel and her crew caught up with us and so did Cindy and her grandkids. Maddux and Bill appeared a little after we got there and you should have seen the welcome he got. All the boys hugged and then ran to get in line at the bumper cars. :-)
Aunt Jill rode rides too. Maddux drove her into Lincoln's bumper car and Sal was Lincoln's backseat driver. Lincoln is VERY headstrong and Sally *loves* to tell him what he should do - they're like oil and water. :-) But at a fair - EVERYONE gets along. :-)
We played our two games at the end of the day and then headed to Golden to picnic in the park with Uncle Mike. Uncle Mike scooted himself over while Aunt Jill walked. I pulled my traditional "run in to pee" at Mom and Dad's. ........When I was growing up my grandma lived only one block away and there were MANY times when the siblings came home for the weekend that I literally ran down to Gma's to pee and ran back (we only had one bathroom).
Lexy (who had been sick) and Mick met us and we dined on sandwiches, chips, bananas and grapes and of course chocolate cake. It was a lot of fun and my home town park has a GREAT playground.
When we got to Aunt Jill's we have to 'catch up' with all the animals. It was raining a little and Tiny didn't want to come out of the garage - he's very delicate you know. :-) Aunt Jill is housing a horse (Kitkat) and a mule (DR) for a neighbor in exchange for mowing of the fields. The mule is really kind of cool. He loves to chase Mabel. :-)
Bob Cat and Miss Kitty came out to greet us, but Booger stayed in the red barn and from what I understand only comes out to meow when he's being fed and then hides back in the shadows. My sister has some real strange animals. :-)
Brad and Becky and the boys came out and we had Jill's world famous lasagna. Sally has asked me over and over to make that (and you know how well Sal talks sometimes - lasagna doesn't sound like lasagna when she says it). Lincoln stayed overnight. Lincoln and Jack are definitely cut from the same cloth~ :-)
Saturday was Kid Day at the fair - which means arm band day and they can ride rides from 1-5. As always it was the HOTTEST, STICKIEST day, but we packed up, found a halfway un-muddy parking place and headed in. They had a BLAST! Rachel and her crew caught up with us and so did Cindy and her grandkids. Maddux and Bill appeared a little after we got there and you should have seen the welcome he got. All the boys hugged and then ran to get in line at the bumper cars. :-)
Aunt Jill rode rides too. Maddux drove her into Lincoln's bumper car and Sal was Lincoln's backseat driver. Lincoln is VERY headstrong and Sally *loves* to tell him what he should do - they're like oil and water. :-) But at a fair - EVERYONE gets along. :-)
We played our two games at the end of the day and then headed to Golden to picnic in the park with Uncle Mike. Uncle Mike scooted himself over while Aunt Jill walked. I pulled my traditional "run in to pee" at Mom and Dad's. ........When I was growing up my grandma lived only one block away and there were MANY times when the siblings came home for the weekend that I literally ran down to Gma's to pee and ran back (we only had one bathroom).
Lexy (who had been sick) and Mick met us and we dined on sandwiches, chips, bananas and grapes and of course chocolate cake. It was a lot of fun and my home town park has a GREAT playground.
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