It is Done.

I made *the* appointment to put my dear friend, Sadie down. I feel like a weasel. How do you "schedule" death? Damn. My head KNOWS it's right. But my heart just aches. Sadie hasn't been Sadie for a while. She hates being touched because of all the moles/warts on her. She can't see well, she doesn't hear almost at all, she's doing her business in the house and seems to not even know she's doing it.

Even at age 17 she's the BEST dog there EVER was - there EVER will be. We were married only a year before we got her. She was so cute - just 3 months old - she NEVER messed on the floor and only chewed a couple of shoes.

And then there's Mabel. OH Mabel! She is MORE than a handful! She sits in the window and howls because she can't go out. She's almost the opposite of Sade. And that's probably a good thing. I'll need that menace to get through the next weekend.

Bill and Taloola have offered to go but *I* need to be there - I want to be the last person she sees. She's always been there for me - now it's my turn. We told Jack about what was coming and he pleaded that we wait till after April 1 so she "could have one last birthday with us". :-) Gotta love Jack.

A Day ALREADY!

In our house you kind of have to hit the ground running, at least you have to hit the ground dealing with Sally. :-) This morning she flipped on my overhead light (I HATE that) and told me that she was sorry for hitting my car. What????? Well, when it all came out - she had hit my car with the plastic bin of garbage. Ok, so your heart recovers. Then she reported to me that Mabel was gone. Sally had seen her (Mabel) knock the front door open and then escape. Well, what's new. I figured someone would call.

I'm in the kitchen getting coffee and Scooter Pie(I added the pie part) is in his yard just going nutso barking. I figure Rexie is out there and he's trying to figure out how to scale the fence to get at her. But no, Rexie is on the table waiting to be fed. As I walk out to the back deck I see a HUGE possum waddling out from under the shed. I called the kids and we all went out and watched him take his sweet time trudging up the hill and out the side gate. But then he stopped. Guess who comes barreling over him? MABEL! Oh, Lord, love a duck. Just when Scooter Pie had settled down, Mabel comes charging in and makes the Possum retreat to the corner of the yard again. I do believe he either scratched or bit her enough to make her "get it" because I heard a little howl and she (Mabel) took off out of the yard again. We all headed back into the kitchen.

As we're making breakfast there's a knock at the door. I figure it's the delivery guys (my washer/dryer is due today) or someone with Mabel. It's the lady on the other block who tells us that yes, she had Mabel in her back yard and she's on her way to work. So the kids and I jump in the car and go to get Mabel. When we finally find the house there is no gate that I can see for her to come out of. Sooooo I got her to put her paws up the fence, grabbed her by the scruff of the neck and hauled her butt over the fence. Only then do I see the mud that she's COVERED in and now *I'm* covered in it. Oy. But I get her back to the car (where she spreads the mud) and try to contain her to the front seat. We get home, put her out on her chain and return to making breakfast. There's a knock on the door again. The delivery guys are here with the Washer/Dryer.

I went out to the driveway and was signing all the stuff when the guy says to me "We're not too early, are we." And as I was saying "oh no, we're up, don't worry." It dawns on me he had not really *asked* that as more *said* that. As I look down at my jacket - I'm COVERED in mud. So he's thinking - boy - you all need that washer NOW! :-) I had to laugh. He was a really nice guy and the kids got to watch him and the other guy use that thing on TV where you place the strap under the real heavy thing and you can lift it. It's pretty cool, actually.

Jack has been begging to play Clue, since last night and so I had told him that if he was all ready to go I would play before school. So as Sally got her backpack together, Jack and I played Clue. After I dropped them off at school I was thinking. Most people are just *starting* their day. Mine is really just winding down!!!!! So all is well. Mabel is in her house, Sadie is in my closet (her own little "house"), Rex is sleeping on the fireplace, the washer/dryer is in the garage awaiting Bill to hook it up, the kids are safe at school, and I've go the coffee made and files pulled to do payroll today. It's a wonderful life. :-) But a little like the Army "we do more before 9:00 than most people do all day". :-)

Things are Crazy

The house is up for grabs again. You know when everything in your life just seems so out of control and you feel overwhelmed? I call this "when the inmates start to run the asylum". The weekend was a doozy. We had the usual swim lessons and then the usual laundry and clean up (because Mom is working 5 days a week now and the piglets aren't picking up after themselves). Saturday night (after a day of kids running in and out and Mabel and her usual howling craziness when anyone leaves) my washing machine broke. I have a font loader and honestly have never really liked it and I think it took offense to that. After putting in a load (and a rather light load at that) the clothes (namely a towel) somehow got wrapped around the gasket that seals the door and wrapped so tightly over and over that it blew the door open. Not sure what it says about us - but we didn't even notice the noise. ;-)


So the washer sits - mostly full of water (as full as those front loaders get) with the gasket hanging out and a wire sticking out. Bill got up early on Sunday morning and went "shopping" for a stackable set. We have a "sub-basement" meaning that half the wall is underground and that half wall is concrete. So the dryer vent (and all other things) come into the house ABOVE this wall - thus making the vent have to do a hike UP the wall and out - we've always had problems with the vent. So with the stackable it now goes straight out.


One problem - they can't get the thing till Wednesday. ugghh. And of course, it has to be on the week that I have the motherload of all laundry. You know, sheets, blankets, the whole 9 yards. Just puts me SOOOO in a fowl mood. I have to say my kids get their patience or lack of it from me sometimes.


Bill got to really "download" with a couple from his childhood who he helped with a snow blower. I've always thought he needed a "Taloola" :-) It was nice to hear him explain how good it felt to have someone "really" listen about Sally.


Sally - Oh my. I can't believe I really CRIED thinking that child would never speak. One must really be careful what one prays for. If I would have taped her mouth shut this weekend I do believe the top of her head would have blown off. :-) As I was running her bathwater Saturday night I asked Bill "is it wrong to want to drown her?" :-) I know it's because of other stresses that my patience with her is down. Not her fault she has a lot to tell me when I'm consumed about getting crap done. :-)


The thing with Sal is that she's always thinking ahead. It's like being with a nagging blackberry. Always chirping about what's coming up when and what you have to do in the future and it's all I can do to make it through the time being. :-) We did broach the subject of putting Sadie dog down this weekend. Sal seemed fine about it when she was told that Sade would be going to heaven. Sally has a thing about heaven and Jesus and God. It's like she's been there before - like she's got a relationship with them that goes beyond spiritual. Heaven is not abstract to her and neither are the heavenly beings. She's very matter of fact like about it. And it's not anything she's been taught. I'm serious when I say it's like she's been there before and has a working memory of it.


It's all I can do to think about it without crying. I know it's for the best. Sade doesn't really like to be touched except the head and ears anymore, she's loosing control of her bodily functions and she's both blind and deaf. Mabel plays so rough with her and God bless Sade - she gives it back - but you can tell it's getting harder and harder for her to rebound. Plus, I don't think she's eating as much as she used to. She'll be 17 in April. She has been the BEST dog to EVER walk the planet. She's seen Bill and I both through some crazy ass times. We got her the year after we got married and I remember wondering what we ever did before she was around. ;-)

Jack Jack

Well, Jack has been at it again. I have discovered a stash of photo-copied "Crusader Cash". At school they give slips of paper (a little bigger than a dollar) for doing good things. Caught being good is a big thing at school and if you save these "dollars" you can buy things at the office. Some things are pretty cool - like lunch with the principal or a basketball game with the Assist Principal. Some classes have even saved up - putting theirs together to get extra recess time. Anyway - seems Jack has been trying to "re-create" these "dollars". I foresee prison in his future. He'll be counterfeiting 20s. Lord, help me.

Another thing I found out he had a police officer at school. The way I found out was that he told the cashier at the grocery store. So all those times I asked what happened at school and got "nothing" - well, seems *I* didn't count much. He was ALL talky to the cashier! So anyway, I asked if he had told the officer that his cousin Bob was in training to be a cop. "No, I was going to - but I couldn't remember his last name - oh, yeah - it's Dave Davidek, right?"

No, that would be the Bob's brother - Dave (Jack has always thought my brother had two sons named Dave) and his last name would be Beckett. :-) Oh, this boy......

And now the tearful part: Jack reported that they have been learning at school about what to do if a gunman comes in. It breaks my hear that he has to learn this - that the innocence of being safe somewhere is taken away. But I have to admit - Jack seemed to take it in stride. I commend Mrs Sievert for that. I think she handled it very well. Jack seemed to know all about the instructions of what to do - but had no drama or freakiness about it. And get this - he even went so far as to ask about what to do if he was in the bathroom (the boy spends a good part of his life messing around in the bathroom). After he was told that ONLY *IF* there was this problem that he was to lock the stall door and stand on the toilet. He then asked wouldn't the gunman know that if the door was locked that someone was in there even if he couldn't see their shoes. I was impressed that he had *that* much forethought. And then I started crying because my baby is having to think about being hunted. Just what are we doing to our kids????

I caught Sally (ok, so the whole neighborhood could *hear*) singing today and asked her where she heard that song. "From my mouth" was the answer with that look of "duhhh". I really think *I'm* the handicapped one sometimes. :-) Sally is also having a hard time with Mabel and asked if I "would speak to her about biting". :-)

And on THAT note. Sal had social club yesterday. She came home with a bite mark on her hand! The counselors had told Bill when he picked her up that Sal had got bit and really had not provoked it. So, when she got home I asked her about it. Yes, Brandon had done it and yes, he was her friend - but he had done it because he isn't a very nice boy. But he is still her friend. :-)
I guess she didn't even cry. I think she knows that sometimes things like that happen.

And back to Jack: I had one of the spec ed teachers ask me to stop in to school to talk about Jack. Talk about LOADED statement! So I ran through EVERY horrible thing the boy could have done. When I arrived she started telling me about a little boy in his class who has spec needs and is "self stimulating" (if you get my drift) lately. I guess he grabbed Jack's crotch. They put a stop to it immediately and after talking to Jack - he didn't feel it was his crotch but his leg the boy grabbed. Anyway - the teachers and aides made sure the boy knew that he was to keep in his own space and they wanted me to talk to Jack about how no one should be touching him anywhere. So we did. I was kind of proud that Jack didn't make a big deal of it and embarrass the other boy. Again, Jack knows how Sal has "space" issues too and probably was giving the child a break. But it was a good chance to bring up again the fact that it's ok to tell someone not to touch you. So afterwards the teacher saw the look in my face and said "I probably scared you, didn't I?" Yeah, I had the boy in military school already. :-) She seems to think Jack is very smart. I love him dearly - but I don't see smart. :-) Sneaky, conniving, that I see. :-) So it's been a week, let me tell ya.

I can hardly wait to see what's in store for next week. :-)

The Boy

Jack was in trouble last night. He had taken the wii controller to a friend's house after being told not to. He did the whole sneak thing and Sally told on him. :-) In his lecture, Bill tried to explain that what Jack did was actually stealing.

"Like, say you took a banana for instance." said Bill

"I wouldn't - because I don't like bananas." Jack interrupted.

Can you imagine how hard it was not to laugh out loud? :-) I just LOVE when Jack does stuff like that to Bill, because it's usually Bill doing this to me. :-)

We hit the library yesterday to get the book "I May Be Wong, But I Doubt It" by Charles Barkley. Sally has a report due on Thursday for Black History. I'm afraid I'm really having a hard time making "Sir Charles" a historical figure. He's in the news just recently for a DUI. So tell me how I spin *that*. I do hope I get a good grade. :-)

Sal had a ball at the library. She's like me - that whole huge expanse of books is just such a great feeling.

Well, off to work - to a nice quiet office where things stay in their place. "Just like heaven."

Oh, the Fun!

Sally had her last basketball game this weekend (unless her and I go to State). Mrs L and Mrs B attended and Sally just LIT up when she saw them!!!! When and if you talk about public school teachers - come sit by me and let me tell you how WRONG you are!!!





Sal has picked Charles Barkley as her Black History project and though I'm very sure "Sir" Charles is a lovely human being in person - I'm not finding all that much that *I* find historical about him. I mean, he's a lot like most of us - didn't make his HS team and fought back plus fought his weight and stature all his life. But he, himself, said that sports players should not be role models and I have to agree with him.





I found he has spit on people (not that they didn't deserve it ) and I'm not sure THAT's a real piece of history. He only went to college for 3 years. Again - not the best influence for a report. Just recently he rec'd a DUI and has announced that he will run for Governor of Alabama in 2014. Now IF he does become Governor - I do believe he will be the first African American to hold that office in Alabama. But other than than - I'm really not finding the big historical making stuff say like Harriet Tubman, Eli Whitney, Malcolm, heck even Harry Bontifelli. So, I'm not sure what Sal's going to speak on. Maybe we'll have to speak on the fact that we all make history, even in our bad behavior. ????





Jack is having some difficulty in school lately - nothing major - just some sliding grades and I think he's 1. rushing 2. pre-occupied and 3. lazy. So Daddy and I are going to nip that in the bud as best as we can starting tonight. He's not thrilled - but we explained that school is #1 and if he's needing a little help wrestling needs to come AFTER we get some practice done.



Day off today - it started at 5:45 a.m. Ugghhh. Why doesn't Sal get the meaning of "sleeping in?"

Autism and advocacy: are parents always right?
Monday February 16, 2009
Just to get my week going with a bang, I thought I'd blog a bit about a subject that's been under my skin for quite a while. That is - the assumption by so many parents that mom and dad, because they ARE mom and dad, must know exactly what their child with autism needs. Not just in the ordinary way ("when Johnny sounds like that, it means he's hungry"), or even in the "mommy ears" way ("it's too quiet up there") but in a mystical way that's far beyond all ordinary powers of knowing.
Apparently, there are moms and dads out there who magically know that their child with autism needs biomedical intervention X, will only thrive after treatment from therapist Y, or must receive services in a particular setting with specialized equipment provided at great expense through agency Z. Their child receives these treatments or services and - only six months or a year later - develops extraordinary new abilities.
As a mom, I do know when my kids have been stressed too much. I can see a meltdown coming a mile away. And I can make a good guess when a topic or activity will be of special interest. I know what foods my kids like, and when they're too tired to do a good job with school work.
But over and over again, I'm surprised by my kids. And that's a GOOD thing!
I was surprised when I found that my son actually WAS willing and able to pick up a paintbrush and help to paint the set for the local production of Pirates of Penzance. I was amazed when he decided, based on the promise of a prize, to bowl one-handed through three entire games. I was impressed when he had an eye-opening conversation with his speech therapist - and shared things I'd never heard before.
Most importantly, I've been taken unawares by sudden developmental leaps. Suddenly, a boy who had never asked a question is wondering aloud why his sister seems so sad. Or where his toy frog has gone. Or whether we'll see his grandparents soon. Had I been right in the middle of trying a new therapy, I would have assumed that it was the therapy that made all the difference. But lucky for me, I've backed off on the therapies. And so, when Tom makes leaps, I know to whom the credit is due. It's due to... Tom.
Over the years, I've learned that there are many things a parent of a child with autism can and should advocate for. A solid academic education. Appropriate supports in school and in the community. Funding for treatments, education, respite, and adult care.
But when parents assume they're always right, I've found, limits are placed on the child, the therapists, and the possibilities. If only Dr. X can make a difference, Dr. Y never gets a chance to try. If only setting A is right, we'll never know if setting B could have been better. And if no one but mom and dad get to make choices for a child with autism, the child himself never gets to see what he can do on his own.



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HOLY COW!!!! FINALLY A VOICE OF REASON!!!! Are we all listening??? Helllooooo??? All of you who are SO sure you know exactly HOW things should go and are SO certain that ______ (name the institution) is out to get you???????? This kind of logic goes to vaccines being the reason for ALL autistics - also goes out to Jenny M who is SO sure her child is *cured* now due to ________ (fill in whatever the newest thing coming down the pipe).



I've found there are TONS of variables - her mood, her development, the chemistry between her and whoever, (and sometimes SHE likes them and *I* don't and vice versa) , the time of day, week, year - you name it. I've resigned myself to the feeling that "the teacher comes when the student is ready" and to look at things with love, grace and common sense. I've also learned that it's OK to be #2 (or 3 or 4 or whatever) And the newest thing I'm trying very hard to teach Sal is it's OK - in fact preferable NOT to be perfect. To "go with the flow". That if someone makes a comment - that it's ok to not listen (that is - as long as they are not your teacher, aide, or parent) :-)



No, parents DON'T know everything - in fact, I've found that I know very little sometimes. One thing I have realized is that I DO know SOME "habits" of hers. And this fascinates Sal. I know when she has to use the bathroom and she always asks (as she's sitting on the potty) "How you know?" But aside from that - I know VERY little. Her and I are connected and there's times I get a little "tingle feeling" and find out later that something happened. I SO wish I could know what goes on in her head. Like for instance - why was she a monster yesterday at school? What made her not want to comply. Was it a specific thing? Or was it an independence thing?

Where's the owner's manual?

It's been a while

In my defense, I have neglected my blog duties because the Oct 97 list has been migrating to facebook. So blame them. I've caught up with the girls who have been missing in action. Like, Laura - who I had no idea has chickens - real live chickens. :-)



Plus, for as good as Sal was as a baby - slept MOST of the time. Well, not so much anymore. She's really coming into the "talk back" "I know it all" "big fat boss" kind of kid. She's always demanding something, or talking back, or correcting or just in general being a regular pain in the arse. And then there's Jack. Who has ALWAYS been a pain. Thank God he's cute and at intervals really makes your heart melt because otherwise you'd kill the boy.



So life has been "sticky" for a while. There has been some good stuff. Sally met for #2 track practice yesterday and we were told she's VERY good at softball through and 50 meter. *I* thought she'd be good at running. Even though she's a chub she really has a nice, smooth, stride. Definitely NOT like her Mom. :-)



I've also noticed some things.: Dealing with Special Needs children - I REALLY hate to say it - but Jenny McCarthy is right about men detaching and woman over indulging. Ok, I admit she was right about one TINY thing - but otherwise - she's an idiot. :-)



Bill is running for School Board. He has some really great ideas and I realized last night that this is *his* way of *helping* Sally. Men help in ways that kind of take them away from the "dirty work". And that's not a bad thing - just different. Me - well, I don't even think of things that *I* want to do - oh, sure - there's the thought of an hour quiet time with NOTHING to do - no children no hub no laundry - that kind of thought - but as far as career or future goals - well, just getting her independent, surviving long enough to make sure she's ok and then trying to prepare her for me to be gone. Makes me tired just thinking about it.

The house is still crazy - Mabel is still alive, for the time being. She has taken to chewing shoes - and the thing that really corks me is that she gets them OUT of my shoe rack!!!! I've always let her slide on chewing things because - well, we don't pick things up well enough and she finds a LOT of things lying around. BUT - today she took the cake. I have a pair of old blue shoes that I haven't gotten around to throwing out yet - they are laying on the floor in the dining room. She took the brand NEW shoes (bought yesterday) out of my shoe rack and chewed them. I tried to explain to her that ruining shoes is the surest way for me to take her to Uncle Tim's farm and SOON! (Uncle Tim owns a gun) :-)

We refinanced today. When we got to closing we were informed that the bank that bought our mortgage stopped taking notes today. We're praying we disperse. Mr Dan didn't seem to be too worried - so we won't either. :-)

We have our last basketball game on Saturday. Sal's looking forward to it. I'm in the process of looking into getting Gma and Gpa to see a game at state. The only thing is that means ALL of us in a motel room. You know how Sal doesn't do quiet on command - I've slept with her when she was sick and it gets very much like a Bugs Bunny cartoon : "I be quiet" " I no talk" " I be quiet for you?" over and over and over. Till, just like Yosemite Sam you want to yell: "Shut up, shuttin up"!!!! So, we shall see how that goes.

We found out some friends have been laid off today. Makes my stomach hurt to hear of people in such dire straights. And the worst thing is there is so little hope. Bill and I are truly lucky to not loose our jobs.

Just a Little FYI

Parents of children with autism quickly become authorities on the subject. But what about in-laws, teachers, coaches, and cousins? Few people outside the immediate family really want to read 20 closely-written pages from the National Institutes of Health. This brief, pithy article provides the bare bones basics for a quick read - along with links to more in-depth information for those who want to know.

1. Autism Is a 'Spectrum' DisorderPeople with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal, and autistic as well as mentally retarded, non-verbal and autistic. A disorder that includes such a broad range of symptoms is often called a spectrum disorder; hence the term "autism spectrum disorder." The most significant shared symptom is difficulty with social communication (eye contact, conversation, taking another's perspective, etc.).

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2. Asperger Syndrome is a High Functioning Form of AutismAsperger Syndrome (AS) is considered to be a part of the autism spectrum. The only significant difference between AS and High Functioning Autism is that people with AS usually develop speech right on time while people with autism usually have speech delays. People with AS are generally very bright and verbal, but have significant social deficits (which is why AS has earned the nickname "Geek Syndrome").

3. People With Autism Are Different from One AnotherIf you've seen Rainman or a TV show about autism, you may think you know what autism "looks like." In fact, though, when you've met one person with with autism you've met ONE person with autism. Some people with autism are chatty; others are silent. Many have sensory issues, gastrointestinal problems, sleep difficulties and other medical problems. Others may have social-communication delays - and that's it.

4. There Are Dozens of Treatments for Autism - But No 'Cure'So far as medical science is aware, there is at present no cure for autism. That's not to say that people with autism don't improve, because many improve radically. But even when people with autism increase their skills, they are still autistic, which means they think and perceive differently from most people. Children with autism may receive many types of treatments. Treatments may be biomedical, sensory, behavioral, developmental or even arts-based. Depending upon the child, certain treatments will be more successful than others.

5. There Are Many Theories on the Cause of Autism, But No ConsensusYou may have seen or heard news stories about possible causes of autism. Theories range from mercury in infant vaccines to genetics to the age of the parents to almost everything else. At present, most researchers think autism is caused by a combination of genetic and environmental factors - and it's quite possible that different people's symptoms have different causes.

6. People Don't Grow Out of Autism Autism is a lifelong diagnosis. For some people, often (but not always) those who receive intensive early intervention, symptoms may decrease radically. People with autism can also learn coping skills to help them manage their difficulties and even build on their unique strengths. But a person with autism will probably be autistic throughout their lives.

7. Families Coping with Autism Need Help and SupportEven "high functioning" autism is challenging for parents. "Low functioning" autism can be overwhelming to the entire family. Families may be under a great deal of stress, and they need all the non-judgemental help they can get from friends, extended family, and service providers. Respite care (someone else taking care of the person with autism while other family members take a break) can be a marriage and/or family-saver!

8. There's No 'Best School' for a Child with AutismYou may have heard of a wonderful "autism school," or read of a child doing amazingly well in a particular type of classroom setting. While any given setting may be perfect for any given child, every child with autism has unique needs. Even in an ideal world, "including" a child with autism in a typical class may not be the best choice. Decisions about autistic education are generally made by a team made up of parents, teachers, administrators and therapists who know the child well.

9. There Are Many Unfounded Myths About AutismThe media is full of stories about autism, and many of those stories are less than accurate. For example, you may have heard that people with autism are cold and unfeeling, or that people with autism never marry or hold productive jobs. Since every person with autism is different, however, such "always" and "never" statements simply don't hold water. To understand a person with autism, it's a good idea to spend some time getting to know him or her - personally!

10. Autistic People Have Many Strengths and AbilitiesIt may seem that autism is a wholly negative diagnosis. But almost everyone on the autism spectrum has a great to deal to offer the world. People with autism are among the most forthright, non-judgemental, passionate people you'll ever meet. They are also ideal candidates for many types of careers.

Special Olympics weekend

Sal was better on Friday night and begged to go to basketball on Saturday. We got up at insane o'clock and got to Oak Lawn by 7:30 a.m. As they started to warm up Sal started crying. The coaches weren't there and a parent had taken over at the basket and had evidently said something to Sal. Ohhhhh - we WILL have words about *that*. So when the coaches walked in Sal was ALL smiles. We lost the first game by one point. God, they played well! The other team had absolutely no visible handicaps - nothing like our team - but we stayed within 2 points of them the whole game!



The second game wasn't as close and it was a team we had beaten before. I think we were all tired and just not into playing. Our guys are so much more physically handicapped then a lot of teams - but they did well, really well.



Our last game was at 11:30 and then we headed home. Because there aren't enough teams from this area - our team has been invited to the Special Olympics in Bloomington in March. Bill and I are both vacillating on if we want to go or not.



Saturday night Bill and Sal went out to a daddy/daughter dance. We had to talk pretty hard to get Sal into a nice pair of slacks and shirt and then I put her necklace on that she got from Susie in remembrance of "her" Sally. But she looked SO nice. She even let me curl her hair. Bill said they had a really nice time and Sally danced with him and had a great time. Plus her buddy Liv was there with Uncle Eric. So she had a really fun evening.

Jack - not so much. Man, he's a booger sometimes. I realize now we should have planned something for me and him to do - like a movie or something. But that boy sure can suck the fun right out of life. He'll be lucky to live till his next birthday, the way he's going lately.

Autism comes RAGING in!

I forget. No, I don't forget - how could I forget - but I seem to go on auto-pilot and take too much stuff at face value. After some investigation last night I have a new understanding of Sal's toilet habits. The new info is what STARTS the problem - and that is neurologically, her muscles have problems with elimination - which in turn makes a painful experience in the bathroom which THEN starts the whole cycle. Dr never talked about the BRAIN part. Soooooooooo, taking her off the meds when "things" were working was BAD. So we have a pretty big problem to fix. At least I know once we get this last episode over with we need to ALWAYS give the meds. It's not a question of not wanting to go with her - at first - it's the brain. And I guess the thing that ticks me off is that I should have realized this before. Sal is the most ALL-AROUND eater I know. She loves vegetables, she doesn't eat THAT much junk, really - not like the boy -It always puzzled me why this kept happening to her. So NOW I have the answer. That going back in time stuff would be WONDERFUL, huh? ;-)

So little Miss Sal is home with Daddy again. Talking to Gma and Gpa this morning Gpa told me that he was going to call DCFS because he had heard that I was "always ruining lives" ;-) That Jack provides more entertainment for my family. They had had heard from Jackie who really enjoyed the basketball game. (Sal's)

Sal plays tomorrow in a tourney at "insane o'clock" and I'm hoping she can participate in it. It's the starting of the Spec Olympics and the team who does well here then moves up and I'd like her to be part of that. Plus, when one is missing the others are anxious about it - even if that one doesn't do anything but "screen". :-) Not to mention that the physical activity will help our whole problem also.

One thing that was recommended to me by one of my Autism moms was to start the day with something warm with the meds. It seems to "wake up" the bowels. The only thing is - Sal doesn't care for warm things. Maybe it's time for us to have a "tea party" in the morning. :-)
I think even Jack would go for that - as long as it include waffles. That seems to be his staple food lately.

Jack Jack is doing well not being in the spotlight since Sal's sick. I got to see him in action on Tuesday - it was Muffins for Moms at school and after consuming our obligatory muffin the kids escorted us to their rooms. Jack immediately took up with M (who is similar to Sal) and I got to see how well he treats M. I was SO proud of him and very touched. Mrs G confided that Jack is the ring leader of the room and makes sure the M is seen to. We've had several kids who have helped Sal along the way: Q, B, and now D and it's so nice to see Jack respond in kind. I know much those kids mean to me that help Sal and I think M's mom feels that way about Jack. She knew him by name and chatted with him and M before she left. So when the boy lands in jail for doing some ridiculous thing I need to remind myself of the time that he was an asset to the community. :-)

No School For Her

Oh, Sal was upset this morning. She seems to be "bound up" and just "not right" since last night and I decided that since Dad was home with pulled muscle that she should stay too. She was a *little* upset but soon was over it and that reinforced my opinion that she's just not well. If she was, she would have fought me tooth and nail.

So I left her in Daddy's care this morning, which she wasn't *too* sure about and gave me that "I'll try and be brave look" that she's so good at and Jack told me,"Mom, she doesn't want you to leave." He seems to have a *little* intuition also - but he, as most men totally ignores it usually. ;-)

Bill went to his "lotto" meeting last night and rec'd #5 (out of 10) on the ballot. He obviously didn't talk to Sal the wishing wizard beforehand. :-) His head was spinning when he got home about all the new info he had rec'd.

Sometimes I have to laugh

Last night as Jack was in the tub - Mabel overturned the dirty clothes hamper. As I set it back up I said weakly "Mabel, Mabel, Mabel"

Jack says "I know, you hate her don't you?"

"No honey, I don't hate her, she just drives me crazy sometimes, I always have to make sure she's not doing something naughty."

"Yeah, she's just like Sally."

I went into the bathroom to see him eye to eye when he explained how Mabel was like Sally because really Mabel is a four footed Jack.

Sitting in the tub, facing me he raised his hands and shrugged his shoulders and said "You know, she's just like *Autistic*."

Illinois, Illinois, Illinois

Changing the Illinois System of DD SupportIllinois residents who have family members with developmental disabilities are getting some welcome support from the Illinois Council on Developmental Disabilities (ICDD). They have created a 72 page Blueprint for System Redesign, a massive seven-year overhaul to provide long-term solutions for all individuals with developmental disabilities in Illinois. But now they need our help to push this through. Why is this important for you?Illinois ranks first in institutionalizing individuals and ranks last in the percentage of people with a developmental disability living in a setting of 1-6 people. As much as 15,000 people with developmental disabilities are currently on waiting lists for services. This will only increase. Do we want our family members to continue marching into this broken system?

Selfless Parent?

Are you the selfless parent of a child with autism?
Saturday January 24, 2009
There are many reasons to get married and/or have children. In my own experience, I find that the majority of people choose to marry and have children because (1) everyone does it, and it just seems natural; (2) they love their mate and/or want the pleasure of raising children; (3) they want the security that comes along with a mate and the expectation that children will take care of them in their old age. Some people certainly marry and have children because it gives them a sense of connection and purpose that they lacked prior to having a family.
None of these reasons, in my opinion, are "wrong" - they're simply part of the human condition.
In answer to my question "has your child with autism wrecked your life?" (referring specifically to children with really profound autistic symptoms), though, one commenter named Laura said this:
We don't become (or shouldn't become) wives or husbands or parents out of a selfish need or motivation for someone to give something back to us. These roles may require complete selflessness on our part at some point in life and deciding that because the other person cannot give back to me what I give to them...their life is not my call to make. And as a side note, I make their life worth living in some way by the way I have so much control over what kind of life they live. As with the disabled husband, with a disabled child, I have the responsibility to figure out what makes them tick, what gives them joy, satisfaction, confidence and any amount of independence and GIVE it to them in ridiculously large amounts.I must say that I am in awe of an individual for whom marriage and childbearing is a wholly unselfish and altruistic act - and for whom selflessness is a pure joy. Few of us would embrace an unexpected disability, and fewer of us would gladly dedicate their lives solely to the joy, satisfaction and confidence of another.
Personally, while I am raising a child with autism - and while my husband and I have made life changes to support that child's needs - I can't really say that I became a parent out of a purely selfless desire to care for another human being. I wanted to enjoy parenthood (and I do!). I wanted a reason to play, get silly, and rediscover the world through a child's eyes (and I do!). It's hard for me to fault parents for feeling angry, frustrated or depressed when none of their ordinary dreams of parenthood come true.
What's your feeling about marriage, child-rearing, and unexpected disability? Express your thoughts here - or vote in the poll!
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I have to admit sometimes I feel cheated. It's usually after I've had some kind of GREAT experience and I'm living life almost forgetting about what Sal deals with and it comes RAGING in. Maybe it's in the form of a full-blown meltdown, a bathroom incidence, a Doctor's visit (you forget she can't open her mouth and say "aw" on command), or maybe a skating party.

Yes, last night it came RAGING in!!! First there was the physical limitations of being able to put on skates (or even helping shove her foot in the boot), then there was the anxiety attack when she began to skate, then there was the CONSTANT need for verbal commands as to what to do. When I looked around and saw that our 3 year old neighbor had gotten the hang of it and we were still NO WHERE near there I remembered. We call it Autism - but I'm not sure that's an accurate name. Whatever it is that has a hold of Sal. That limits her communication, her brain waves, her muscles and joints to work in sync with her brain. It's times like those that I want to draw my sword like Peter did. But I know all too well, it hasn't won everything. There are SO many blessing that go with it. I usually think that the blessings outnumber the problems. It's only sometimes when it seems EVERYTHING is an obstacle.

But in retrospect we beat "it's" butt last night. She did SO well for her limitations that it really is a blessing. Her meltdown didn't last *that* long and she was encouraged by all of her peers. So take that Autism. We will persevere.

My Work Here Is Done

We just got home from JES skating party. I'm putting Jack to bed and he takes out a new pair of pants and puts them on to wear to bed . He also wants to wear his coat to bed. I tell him to take off the pants and coat and put on his footie pjs. He starts to cry and says "You just ruin my life all the time." I couldn't help but laugh out loud. I know he's tired , but it was so funny the way he said it. I got him dressed and tucked him in, kissed him and told him I'd see him in the morning and I'd ruin his life some more. :-)

"You're not supposed to do that, you're supposed to make my life happy and fun."

Oh, that Jack a loo.

So ---- skating. Sally did REALLY well. It was really HARD work tonight. Sal has a problem with herself in space anyway - let alone put her on wheels. So her and I went around the rink about 4 times all together. It took a while but we made it. We got something to drink and then watched all her friends.

That was cute too. All her buddies would give her kuddos and support as they passed by on the rink. Mrs Legner was there - she skated with Sal tonight. Sal was quite the talk of the place. Everyone was so proud of her. I KNOW she FELL into bed tonight - we had Tech club, school, bowling and then skating. No rest for the wicked. ;-)

His Pocket

Sigh..... I asked Jack for his library card this morning. I had given it to him yesterday so he could get a book on the book mobile. "It's in my pants from yesterday."

I cautiously put my hand in his little pocket(I'm always on the alert for something to bite me). I swear the boy could last 4 days in the wilderness from what he has in his pockets. There was trail mix, that he had bought at lunch and was going to give to his sister - but forgot, 2 Pok'e mon cards, a tiny pencil with the eraser chewed off. I found two pennies in the other pocket, a folded math paper, a cap from a milk carton (that he kept from lunch so he could play with Rexie later on), a Crusader cash, and his library card.

Between his pockets and his backpack it's scary what the boy deems "important" enough to hang on to. (rolling my eyes)

We're on day #3 of him wearing nail polish. He said some kids laughed at him - but not that many. I don't know if I should be proud that he doesn't give in to peer pressure or ashamed.

Jack decided today, that since Sally goes to school early on Tues and Thursdays, he should then walk by himself to school. When I agreed and told him he could go right then he changed his tune. He'd start next Tuesday. I swear sometimes that boy seems to just say things to see if he can manipulate his way. Almost like his life isn't right unless he's being persecuted.

Sally, on the other hand is always in a good mood and always happy for ANYTHING! I got a big thank you today because her Staley shirt was clean and that I had it all ready for her to wear today. You just never know.........

Tonight is Jack's b-ball session and I *still* don't know who Robert (Sal's People) is. So I'll get that disappointed "it's ok - I know you're a looser" look from her. ;-) She's SO into her schedule. We go over what's going on every morning. Sometimes I have to remind her that we need only think about the day at hand.

I had homework last night. Another questionnaire from the Psychologist at school. If I had a nickel for every questionnaire I've answered - well, I wouldn't need to work - that's for sure. I'm thinking seriously of making a LOT of copies of all the Dr reports for EACH teacher and or therapist going into Middle School. It's frustrating sometimes.

Speaking of.... the husband was upset last night. Mostly about lack of care coming his way from others. It's hard to watch him go through things sometimes. I know it's part of the grief stuff that we have to go through due to our situation and I guess I should just be happy that it seems we don't do it at the same time. :-)

Someone once told me that it was like the ocean. You go in and you feel the cold and you keep wading in until you can't take the cold anymore and you have to back to the beach and then after you warm up a little you go back in .... repeating this process over and over and over for the rest of your life. It's hard - but not as hard as it could be. Only I know better than to mention that right now. Everyone needs a time to really *feel* it, on their own terms.

It's cute to watch Sal on Tues and Thurs morning. She has Tech club at 7:30 a.m. and I take her to school early. I have to get out and open the door for her (so celebrity fashion) because she can't open the door. She hardly kisses me good-bye. She's all business, ready to start the day. Jack gets a little chance of "freedom" by getting to stay at home for the few minutes I'm gone.

Jack also gets to cook his own breakfast and do what he wants to without torture from his older sister. And I get peace!!! I'm loving Tues and Thurs mornings.

Mrs L told me that last Tech club Sal needed NO help at all on her computer. They were to copy a poem (typing) and then add pictures for the poem. Her poem typing was a *little* off but her pictures were great and she did it ALL by herself!!!!

Sally has also decided that she should be the one to keep Mabel in line. What's funny is - no one deserves it more. :-) She *roughly* pets her and tells her in her fish wife voice "Mabel, you not bite me, you be good, lets play tug of war, Mabel." Which consists of Sally pulling Mabel around by a rope toy and yelling at the top of her lungs: "tug of war, Mabel, tug of war". It really is quite comical.

Jack wanted his nails painted last night - because some wrestler has them painted. AND was quite upset that I had no purple polish. It was like I wasn't American or something because I had no purple nail polish. He did, however, pick out a chrome color and was ok with it. We'll see how it went today in school. I kind of hinted around that some kids may laugh at him. He seemed not to care - so we'll see ..... It's that double edged sword again - not wanting him to fall to peer pressure but yet wanting him not to be totally outcast either. Lord, give me strength.

It's been on of THOSE weekends....

It was a tiring weekend. Sal has been kind of out of sorts. Not really sure what it is. Swimming went very well and so did basketball. We even managed to find New Lenox and Lincoln Way. We're beginning to be world travelers. :-)

But after that home life has not been pretty. I think I caught whatever Bill has last week. :-( And Bill just getting over whatever it was ..... well, it didn't set well with Sal that her parents were kind of "down for the count".

Talked to my Mom - seems everyone I know has Cancer. And the few down there who don't are busy tending to the ones who do. It's a sobering situation.

My sister is on to be in the Follies. She's got her script and is busy memorizing. I don't know how she does it.

Lon and I are trucking through the country this morning to get our hairs cut. I'm supposed to go in after that to work but I'm going to call bossman. I got 0 done this weekend and this is the last Monday off due to tax season so I figure I could really use the time here.

Bill picked up his tee-shirts this weekend and hats. Jack and Sal proudly wore things to the game. So many people have "said" they'll vote for him. It will be interesting.

Right when the vote ends and tax season takes a back seat I need to make sure to check out all the things that need to be done to transition Sal. I'm very anxious about it and I'm trying hard not to be - you know how she picks up on all that. In fact, that could be some of her "stuff" lately.

Ya just never know.