Oh yes, Fran, he remembers the concert is this weekend, but I think that's the only thing on his mind (he's not pleased, poor baby!). I've been reminding him since February and also throwing in that's it's all I want for our anniversary, so he may have it in his head that Saturday IS our anniversary!

I don't know why Bob was the only non song name...I think Chelsea might have come up with it, and we were coming up with all the song names. Bob and Jack are so cute...all black with blue eyes (same as Lukey was). Murphy is completely grey (so was Penelope), Taylor, Gideon and Charlie are grey and brown tabbies and Summer is a grey tabby. Taylor has a capital 'T' in the fur on his back!! It's fun, but they're very tiring, especially when all 7 want to lay on you and not let you leave! 

---

Some people shine like a star in the first moment. Others keep their light hidden until they are ready to show us.

Happy 20th, Trace.  I hope your night in Toronto with the by's and friends was a blast.  Tom and I are off this coming week; can't remember the last time I had a full week off.  We're hoping to slip away for a couple of days to visit a friend's property about 75 miles from here - tip top corner of Virginia almost in West Virginia.  It's 141 acres with a pond for fishing and a creek for swimming.  We ride tractors and there's a 4-wheeler there.  Small hunting cabin with no real amenities but you don't need any - just peace and quiet and the great outdoors.  We have lots of fireworks left over from July 4 so we'll blow them up I'm sure.  I'll be cranking GBS which will be able to be heard for miles but there's no one around but us so we'll be having our own private kitchen party.  We hope to go tomorrow and come back Wed.

Nothing new of the Emma front.  She has 2 tests left to take (took 1 of them last week and failed it cuz she didn't study; is taking another stab at it in the a.m.; don't know what will happen if she flunks it again!).  But.....no community service done, although she promises every other day that she's going to go do it "tomorrow."  But I did find out from the school that once she's done with the academics we no longer have to pay tuition; they'll just hold her diploma until the community service is done.  I haven't told her that yet or she'll never do it!  She got a new job working at a tiny dance shop selling shoes, leotards, etc.  She's working with a friend a seems to really like it.  She hopes to go full time when they're busy season starts mid August.  The deadline to sign up for community college is August 1st; I was hoping she'd start there (the school is only 2 miles from my house), but can't get that ball rolling until she graduates from high school.  I'm concerned because if she is not a full time student, she's off of our insurance at age 19 (April '09); very scary with all the meds, etc. that she requires.  Her main focus is partying with her friends and we don't see much of her.  But...she seems happier than she has in 2 or 3 years - no "boy" in her life right now so she's carefree and wild.  She lives day by day and doesn't worry about the future.  I reckon that's okay for now, but she needs to think about growing up some. 

I hope everyone is enjoying their summer.  July is my favorite month of the year.  Music, beverages on the deck and summer heat.  YAHOO!

Cheers! 

Robin

While searching for something else on my computer, I found this. Weird - I wrote it 7 years ago on my Dad's birthday and here it is - my Dad's birthday. Even though he's not here to celebrate it anymore, I think he still reached out and touched. If you know what I mean.

>Don't ever close the door, say you can't forgive someone, "know" they'll never change.
 
>Tonight a miracle happened. Because I never closed the door, I allowed it to happen. Eight years ago at this point in a long horrible summer I was ready to give up custody of my son to the State. Eight years ago, he was doing drugs, smoking pot, swinging lawn furniture at his father, beating up on his sister, stealing money from his mother, running away for weeks at a time, hearing voices.

>Seven years ago he was doing drugs, smoking pot, hearing voices, setting fires, beating up other kids' sisters and looking at the inside of a police station.

>Six years ago he was spending a long time in a mental hospital, blaming his stay there on me and his dad. He told me that he hated me and couldn't ever feel like part of the family. He and his father spent a lot of time yelling at each other in family therapy sessions. I cried a lot.

>Five years ago, he was still terribly hurt by our "betrayal" of him and decided to take his mental health into his own hands and we asked him to move out. A mental health worker pulled me aside and said, "Don't worry too much. Step back and look at him when he's 26. He'll be a different person."
 
>Four years ago, he was "couch surfing" at the homes of various friends, not able to keep a job and still very much angry at his dad and I.
 
>Three years ago, his brother told me that he was starting to change and that I might enjoy talking to him if I could - I couldn't.
 
>Two years ago, he told me that we were right to do what we did when he was 14 and that despite what he had previously told me, that the time in the mental hospital was well-spent. He said if we hadn't "put him away" that he may have been like the Columbine High School kids - he was THAT angry at life. Two years ago he became a father - way too young if you ask me, but no one did. They lived with us for a year and then split. He had nowhere to live and against our better judgment at the time, we allowed him to occupy our house we hadn't sold yet. There was no good reason for us to do this, He had never paid any money back and had just taken, taken, taken while telling us what horrible folks we were. Two years ago, he made sure to tell us he had been drug free for 2 years now. There was hope, slim, but hope.
 
>Last year, he asked if he could buy the house. He set up a timetable for purchase and contingency plans. He decided to be apprenticed to a contractor. He had us over for Thanksgiving Dinner. We had a Kitchen Party afterwards, playing guitar, ukulele, and fiddle. He told us how he loved family holidays. He made me think a lot on the way home.
 
>Tonight he called me from Texas where he is visiting his daughter. He called, not to ask for anything. He called to see how I was doing since it's my Dad's birthday today and he knows I miss my Dad. He called me because he wanted to see how I was doing. My son. Called me. He was concerned.
 
>Don't close the door. Mine just got thrown wide open. He just tumbled in, ahead of schedule - he's only 23.

Post script - He is now 29 years old. He never did figure out how to get the house. Just asd well I suppose since he was out of work for 6 months last year. He is now working for himself doing historical restorations of wooden objects. He seems to be on an even keel emotionally and we are on good terms with him. I am still a little guarded, but I was deeply hurt. Gonna take a while I think. I still love him, I just don't trust him too far. Leave the door open, you never know, you just never know.

Anne

---

And when the winds of change begin to blow,
I'll whisper, "You're my lighthouse" in case you didn't know.

Sons of Maxwell

visit my website!:
Anne's Philly Phan Site at http://www.gbsfanatic.com

oh Anne, that brought tears to my eyes. I am so glad to see that things turned out ok. Very hopeful.

 

 

---

There's a difference between interest and commitment. When you're interested in doing something, you do it only when it's convenient. When you're committed to something, you accept no excuses; only results.”

Anne, that was just beautiful. Your story could give hope to just about anyone going thru similar things. Thanks for sharing it.

And happy birthday to your dad. Yes, I know what you mean...maybe he knew you needed a little reminder that things get better, and that because you gave your son tough love, he did too.

---

Some people shine like a star in the first moment. Others keep their light hidden until they are ready to show us.

Thank you for the post, Anne.  I cried but it was a good cry.  I know the pain you went through as we're going through it now.  She gets my hopes up and then lets me down again and again and again.  I am very guarded when it comes to Emma.  Always on edge waiting for the next ball to drop.  She lies so much she doesn't even realize she's lying.  Things are better around here that's for sure but have a long way to go.  I will always love her, but, like you, don't trust her much.  Her dad's and her relationship is so strained I don't know that it will ever be fixable.  The ADHD medicine is helping her focus better at work.  She is still a complete slob around here and I am weary of her destroying this house constantly.  Clothes everywhere, dirty dishes everywhere, she burned a hole in our new sofa while we were gone for 2 nights this week.  Stale food and glasses with 5 day old milk in her room.  We try to keep up with her by not letting her out of the house until she picks up after herself, but it's mighty hard with both of us working.  I know she'll be glad when we go back to work next week.    Any how - reading your post made me realize there is hope.   She's only 18 and truly only about 14 in her mind.  She is holding down a job and that's a major bonus.  Perhaps she'll finish high school one of these days.  I will always love my Emma Leigh. 

Robin

Ok, need to let out a bit of aaahhhhh.Alex had another round of shots friday. It was the best yet.No pre meds, He walked right into the OR, wasnt afraid of the IV or going to sleep. It was awesome. The problem.... He has been awake with nightmares everynight since. Hes dreaming of bugs again. Just when I thought We were done with all that. Im being strong for my son but I really dont know how much more of this I can handle. I just wish there was an end in the near future. I still have no idea how many more of these injections we have ahead of us and the major major surgery is less than a year away.I still dont know if that will be the last but I somehow doubt it.Its just not fair. He doesnt deserve it and now that he is 5 I cant help but wonder what the long term effects ( emotionally) are going to be. Anyway, I think I have blown off enough steam.

---

Lyndz

(((hugs)))

 

 I am so sorry.

 

We are left wondering if we will ever find out what the problems are with Karissa. We took her to Salt Lake and I sat there among people who had it so much worse than we do and I felt like I was so far in over my head. The Dr said basically "why are you here now?"  Yes she is progressing, no she hasnt lost anything she has learned but she is still so far behind in so many ways. It breaks my heart when kids who dont know her look at her like WTH is wrong with you?

We have to decide if we want to go ahead with the MRI and genetic testing, there is less than a 30% chance we would learn anything from them. Is it worth the trauma? The Docs all say there is no way to know in most of these cases. They just are and some kids out grow it and some kids dont and some will thrive while others dont.

 

So what do we do? How do we know? Some days I wish I could just peek into the future 10 years or so from now, just a peek. Tell me if she is going to be ok.

---

There's a difference between interest and commitment. When you're interested in doing something, you do it only when it's convenient. When you're committed to something, you accept no excuses; only results.”

I'm so sorry Binny. Knowing IS important. I think while they're young, it isn't important to them, but when they're older, to just have an answer for themselves even, is important. I know Adrian understands his condition and I think that understanding is a good thing. If we'd never found out he had AS, he wouldn't have received the help he has, and he could be 18 now, wondering why he's different and why some people treat him the way they do. We'd also no doubt have friends and relatives questioning why he is the way he is. Just for him to know that these things are not 'weird' and they don't make him a 'freak', and that he can't help it, is a great relief to him. It doesn't stop the torment he sometimes goes thru, but at least he knows that it's because those people are jerks and that's all. 

My opinion? Wait till she's a bit older. Explain to her why you want to do this. It's for her benefit in the long run. And I think if you don't, later in life she may wonder why you didn't. If say, at 10, she adamantly does not want to go thru the testing, yet understands it's for her, then don't put her thru it. But no kid wants to go thru anything, that's why we have to make those tough decisions...lucky us.

Good luck, Binny.

And happy belated birthday!

---

Some people shine like a star in the first moment. Others keep their light hidden until they are ready to show us.

Binny: go with your gut instinct I have never been wrong when going with my gut instincts. It may not be the easy road that you pick but at least you pick it, it won't pick you.  While on that road remember; It's just an ordinary day and it's all your state of mind...

---

~The mind is like a parachute, It always works best when it's open~Edna Buchanan~

~Northern Spy~The Apple of my Pie~

~Audrey~

My sister has autism and I've been living with her and my parents for the last two decades. (I'm in university and starting my Master's soon)

I think the main frustration I have is the general public's lack of understanding about mental illness. Seems that if a disabled person causes a scene somewhere, everyone feels compelled to just stare at the person like they're from another planet. I know so many people - including some friends - that don't have a clue what it's like to live with and just shrug it off, as if it's a minor inconvenience. I guess it's not their fault since it's difficult to even comprehend if you haven't lived with it, almost like people who have fought in a war.

It's been even more difficult lately since she seems to be getting worse. Daily tantrums, screaming, crying, and it's absolutely impossible to determine the reason. She just does it. It pains me to think about all of the things my parents have gone through (especially my mom) and what remains for them in the future. One day, caring for her will become too much, and then what? If she ends up on the system she'll just be heavily medicated and/or sedated so that she doesn't have to be dealt with. If I find myself sometimes cursing her in my mind out of frustration and anger, I have to wonder what others would do.

Thanks for posting, Zapp. I think your sister is lucky to have you in her life. I have often stated that I consider myself and Adrian 'lucky' because his condition could be so much worse. But it is a struggle, none the less. But I constantly remind myself that if I feel the strain of Asperger's, imagine what it feels like for Adrian. And I know where you're coming from about the general public. Before Adrian was diagnosed, we got those looks and the questions as to what exactly was wrong with him. We still get that. He's always going to be 'odd' in the eyes of the general public. And I know how it affects siblings, such as yourself. Chelsea has been affected in many ways. She has lived with Adrian's outbursts, his lack of social skills, his only caring about his own wants and needs, etc since she was born. She has mimicked some of his behaviours, even. It's confusing to her. She's 7 years younger than him, so she's only now got to an age where she can kind of understand. She loves him, but a lot of the time she doesn't like him. She says at least once a week that she wishes he'd just move out, and gets very upset at the prospect of him living here for many more years. I think a lot of the time she just wishes for 'normal'. She's getting to an age where her friends are now questioning Adrian's behaviours, which reflects on her. You know that age where if a kid says 'Chelsea's brother is really weird', it's like they're saying that Chelsea is really weird. I try to give her time away from the house and him, which isn't difficult because he'd rather stay home than go anywhere with us. But she wonders why she learns consequences and he doesn't seem to get it, why she helps around the house for her allowance and just to be nice and he doesn't, etc.It's hard for ME to understand, let alone an 11 year old girl. But I know, as with you, Zapp, that she will be there for him throughout their lives. The gap will get smaller eventually.

---

Some people shine like a star in the first moment. Others keep their light hidden until they are ready to show us.

Good news from me for once ---- EMMA GRADUATED!!  We picked her diploma up from the school on Thursday.  We had no idea it was happening because she never did her community service.  Either it was an oversight on the part of the school (although I had talked to 2 different people there about it in the last month), or they just said the heck with it and gave her the diploma.  I certainly didn't ask about it.  Got the diploma, her sealed transcript and a copy of the transcript.  She brought her grades up to a 3.1 and has an advanced studies diploma.  While at the private school she had all A's and 1 B.  My boss allowed me to take a long lunch hour, and I drove to her work and called her outside and had the diploma laying on the passenger seat of my car.  We hugged and cried and drove around for 20 minutes listening to "Walk On The Moon" and crying more.  Such a boost in self esteem for her.  She kept muttering, "I did it, I did it."  We hope to work on announcements tomorrow.  I am elated.  What she does now is up to her but I feel like I did my parental responsiblity pushing her through this (and man did I push - up her butt every single day til I was sick of hearing myself speak).  Tom is giving me kudos (which I appreciate cuz I usually never get any), because he gave up on her long ago.  I refuse to.  So....it's a happy weekend at my house.  Thanks to you all for all your support.  This thread has gotten me through many a rough time; having people to talk to who know, understand and care.   I know there are many hurdles ahead, but we just jumped one successfully. 

Cheers!

Robin

Congratulations to both of you! And it may actually help her in other departments just to know that she was able to do it.

On a side note, in Quebec, you don't need any sort of community service to graduate. Although I understand the point of it and know it's importance, it should not be the deciding factor in graduation. In the end, perhaps as in Emma's case, it needs to be decided on a case by case basis. In a way, not fair to others who had to put in the hours, but it would be so much more unfair to keep someone who's struggled to do the school work and managed to get through anyway from graduating just because they do their hours.

---

"I see you in the front row, bouncing up and down, you're ripped and ready for a night downtown." ~ Margarita
What's wrong with a little flirtation?

Monster Tee