autism, college, organizing, sleep, surveys, writing

Something’s missing, don’t know what. Some cool surveys, though.

I just want to do something different but don’t know what. I’m happy, but… oh, I don’t know. I love my kids, my husband. I love being a stay at home mom. But my dreams of school seem to be on hold again. It’s so hard. I know my kids come first. Here’s some postings from my moms group which just say more about all that

User: dori

Comments: I’m going to try and STOP talking about my decision stuff SO much after this because I think you’re all getting sick of it. But I need to just reply a bit more to stuff from the past few days. THEN I’LL STOP so you don’t kill me :P. So I’ll try and keep it short and first will just update you on the present.

Chris has been in a pissy mood these past 3 days and it’s driving us crazy. He DID GREAT for about 2-3 weeks (except for sleep) – his mood was terrific and we thought the meds were working. I had neglected epson salts lately (we ran out and I kept forgetting to buy them) so just started them again now.

I actually got to go with Colleen alone to Geauga Lake Amusement Park! Both were very fun and I’m glad we got to do them. Yesterday I went with Colleen and Ryan again (Rog stayed home with crabby sleepless Chris) and we went to her friend’s sister’s birthday party and then to our nephew’s graduation party. So we had a nice time there.

I’m going to spend today cleaning in my bedroom. Tomorrow my mom is coming over and we’re going to move the dresser out of our room and hopefully rip out the old moldy carpet. Water still streams down through the wall there (yuck). We’re going to pour concrete down on the wall/floor before we put the new tile down in a few weeks. We try and keep a close eye on Chris in the tub but it is still getting wet so must be leaking behind the tub itself. I am so eager to get that crap out of the room!

Ryan DID NOT sleep in his new bed last night – I tried for a while but it was so late I just laid him in his crib in our room. I knew it might take a while but wasn’t sure – Colleen had no adjustment period at all – she was less than 2 and just started sleeping in the bed immediately. Chris was 3 1/2 and also just started sleeping in it right away but of course was older. So I don’t know how long it will take Ryan – I know all kids are different. He laid in there but kept getting back up. Any suggestions from BTDT situations? Should I maybe have Colleen stay in there with him a while to help him sleep?

What a beautiful day – think I’ll take the kids for a walk soon.

Will be back with “college comments” ;P

love ya, d

Time: Sunday, 6/27/2004 9:46:30 AM (#56122)
User: dori

Comments: Lastly, before college stuff I forgot to tell you Chris starts SUMMER CAMP! tomorrow. I just hope he’s not so “off” they send him home. he’ll go 8:30-1:30 all through July.

Time: Sunday, 6/27/2004 10:03:28 AM (#56123)
User: dori

Comments: feel free to scroll if you wish……

DORI-I’m going to be brutally honest with you…..I don’t think you need to do school this fall. I do appreciate the honesty and opinions.

I think that is your “fight or flight” system kicking in. It may be, but it may not be. This is something I’ve been wanting to do for years. I had always planned that when I finally could stay home with my kids I would go back to school. Now, I always had a reason NOT to. But it was always my plan. I graduated in 86, planning to eventually go back but I didn’t know what I wanted to go back for. I started in the legal secretary field, believing at that time that I would be working for quite a long time even while I had kids, but that eventually I would go back and get a bachelor’s degree.

When I stayed home in 94, I worked at home and real quick then got a part time job in 95. In 95 I went and got ready to enroll in paralegal classes, when Colleen was 1. I then decided due to partially Chris’s needs then and how young Colleen was that it was too soon and too much. So I withdrew that plan.

I worked part time until 97 and then got heavily into working at home until 2002. But meanwhile in 2000 I again enrolled in school to take medical transcription, again withdrawing when I started working full time at home doing LT.

then you know the rest I’m sure, I worked part/full time 2002-2003 only now staying home since January. THIS IS THE LONGEST I’VE EVER BEEN HOME DOING NOTHING ELSE! Even in 94, I had Colleen in end of May, and by Fall I was working weekends and typing at home. She was 4 months old. So I’ve beat that time by a month.

I love being home. I don’t want to work. It’s just part of that plan for that LAST 18 YEARS was that when I was home, I would go to school. It’s hard to give that up, but I see that I might have to. At least for now. I am praying over it. It’s just hard to give up something you’d planned for 18 years. I don’t know if anyone else has ever felt that way. I’m not like “dang it, I want to do this and I’m doing it no matter what.” I know it may not be best. But it still hurts.

You need to take that same time and put in to doing all the stuff for Chris that you say you never have time to. Study, research and investigate diet and other biomedical issues that could help him to live a fuller and healthier life. Focus on getting yourself in shape–physically, mentally and spiritually. Take time and investigate all those placement options for “when/if the time comes” so that you’ll be an informed mom making wise and informed choices for your kid. That’s my opinion. ๐Ÿ™‚ {{{{{{{{HUGS}}}}}}}}}}}I agree with that. I have been studying and researching. A lot of my time on line is doing that. I have found out about a grant we can get. I researched North Carolina and what we could do there. Gayle and I and Rog have extensively read ARI sites and DAN sites. We have been to numerous experts. We do all these things now. We will continue doing them. I APPRECIATE all the feedback though – don’t stop giving me suggestions, everyone! Because there may be something I’ve missed ๐Ÿ™‚ — like this grant thing – it’s a local grant through our MRDD that I’ve never even heard of!!! It may cover extra therapy time that our FRS insurance doesn’t pay for. So yes, the researching/discussing/open ears/open eyes will continue ๐Ÿ™‚

But I wanted to say, it bothered me a bit when you said that I said I never had time to research these things for Chris. I don’t remember ever saying I didn’t have time to research? I think others here may have said it, but I didn’t, to my recollection. We take a lot of time to research and will continue. Just wanted to clear that up as it was bothering me, like I want to take all this time to just goof off or clean or go to school or whatever but don’t have time to research.

I just feel like once Chris and Colleen go back to school I MIGHT HAVE 10 hours a week to devote to a class. Ryan can go to the day care there 2 or so hours every 2-3 days. I didn’t really think that was so bad. But I might be wrong. It really looks like I’ll have to wait until at least Spring anyway, which is fine. I agree that if Chris STAYS LIKE HE IS, it’s not going to work. He HAS to sleep, he has to be content. He ISN’T, right now. I CANNOT GO TO SCHOOL until he is better. I know that. It would be insane. We are going crazy, sleepless, crabby. We take turns sleeping. He DID sleep last night. We were so grateful.

Be back to answer JEN. Thanks guys, I appreciate the feedback!

Time: Sunday, 6/27/2004 10:10:13 AM (#56125)
User: dori


JEN – DORI Going to school at this stage in your life sounds like it would be more stressful and less helpful then I can imagine going through. *I* would evaluate deeper in your shoes (hoping I am not stepping on toes) along the lines you mentioned. It doesn’t seem like you have been home very long and you are ready to head out. They all need you so much at this point. It might serve you better long term to stay the course for now. RIGHT NOW, yes. I can’t imagine going to school now. Like I said to Kimba, everything hinges on Chris getting better. I can’t go in Fall unless he’s better, I can’t go in Winter unless he’s better. If he’s not better in 2005 I can’t go.

You’re not stepping on toes – I appreciate honest feedback! I do plan to investigate volunteering with music in school and hopefully soon church. That was very fulfilling to me when I did it.

Not really ready to “head out” of my home, read about what I said in the post to Kimba. I have always planned to go to school when I was home. Just part time. I don’t really think of that as heading out. But I may have to postpone it. Heading out though I would think of working part time, working full time, going to school full time. I guess it’s just semantics but I don’t think of taking one class as “heading out.” But you may have thought I was going to school full time. NO WAY. ๐Ÿ˜‰ not until Ryan is in at least Kindergarten!!

About the work thing, that’s another story. continue TO SCROLL IF YOU WISH, I’ll be back ๐Ÿ™‚

Time: Sunday, 6/27/2004 10:19:32 AM (#56127)
User: dori

Comments: as many of you probably remember I’m on unemployment and continue to look for a job. And I get some supplemental income this way. I am seeking full time work (only way I can get the unemployment) and GOOD jobs with benefits, good pay, good companies. It takes 1-2 hours a week to scour all the ads and apply. It’s annoying. And there’s NO bites at all, probably because of my spotty job history. I’m applying for legal secretary, regular secretary, administrative assistant jobs. That is much more than I used to do. I have broadened my choices quite a bit. Still, no bites. So, hopefully in the future I can get this new degree and work on a new career. I think I would be good at it. Whenever it happens.

So that’s that – we’ll see what happens. Rog is looking too. But CHRIS’S HEALTH is priority – obviously if we’re up 4/7 nights all night with Chris, taking turns, neither one of us can work very well. Rog said last week (and HE’D gone to bed, I stayed up!) that he fell asleep driving! That scared the crap out of me. He said like for a minute he didn’t know where he was. Yikes. It’s just sometimes even when I stay up with him he’s so loud Dad’s up too. And Ryan, he’s up every night at 2 a.m. Though he goes right back to sleep (in our bed) it’s still an interruption.

OKAY guys ๐Ÿ™‚ think I’ve explained all that well enough. PLEASE feel free to give advice, ask questions, whatever. I don’t care – I have asbestos underwear I think ;P so whatever you say is fine.


Time: Sunday, 6/27/2004 11:15:48 AM (#56129)
Comments: DORI: I rarely butt in here but I wanted to give you my .02 — stay home right now. Just stay home. Quit looking for work. YOU need to be home to care for the kids and especially Chris. If Rog has to work another job to make ends meet, then so be it. You need to be home.

Time: Sunday, 6/27/2004 12:24:09 PM (#56131)
Time: Sunday, 6/27/2004 12:57:12 PM (#56133)
User: dori

Comments: weird, I just had a migraine aura. Screen still doesn’t look right. I hope I don’t get the full-fledged headache/vomiting. Ugh. Strange, don’t know what caused it. I used to get them a few years ago and also in adolescence.

Later, d

Time: Sunday, 6/27/2004 6:47:35 PM (#56145)

Comments: Dori – I agree with Cassie and the others. The way I see it pretty much your whole life at the moment hangs on Chris’s; behaviour. Everything from your study to Colleen & Ryan’s mental and physical health hinges on this one issue. If you can resolve some of Chris’s problems, that is THE most important thing you can do to improve your future life. Focus on THAT, and that alone for a while. Don’t let yourself get distracted – because it ALL hangs on this one nail. Put a big note on your bathroom mirror. “Helping Chris = helping the whole family” Someone else said this: make this your job. If you can do this; if you can keep yourself focused on this ONE issue (and I know this is extra-hard for you with your ADHD issues) I think there will be significant long-term benefits for everyone. I also suspect that your sleep deprivation makes it hard to focus. Sleep deprivation IS torture, by definition, for a reason.
Time: Sunday, 6/27/2004 6:55:44 PM (#56147)

Comments: Dori: You know what I think. You’re not going to be successful with Chris unless you make it your number 1 priority. With Colleen’s issues, you’re going to find that you’re making the same dietary and nutritional changes with HER that you are with Chris, and you’re going to see her improve too. And you’ll make the same changes with Ryan, and he’ll improve as well. IS THERE SOME SMALL PART OF YOU that needs for Chris to be severely impaired? The homeopath has made me face up to some truths in recent weeks, and has forced me to make some big changes, and part of me is sure she’s WRONG, and that my attempts to change will be meaningless, and part of me is afraid she is right. So, I’m dealing with the part that is afraid she is right. And I’m making small changes with the way I deal with Alyssa, and am working to put her back into her place, which is NOT running the family like she has for the last 3 years. Eventually, I’ll post about it in a bigger way, but not yet. I’m not to a point where I can handle constructive criticism here, and I’m not ready to examine myself more deeply/introspectively any faster than I’m currently moving. But I am facing some fears and taking some new risks. and sometimes it feels GOOD, and sometimes it feels SCARY. So, I guess what I’m saying is, I know what you’re going through, and you’re not alone in this. *big deep sigh* Hugs!

It’s very long but brings forth a lot of my feelings and what’s been going on with Chris. A dear friend asked me if there was some small part of me that wants Chris to be impaired. That was the strangest question I’ve ever heard. I don’t know how to answer. Of course, the answer is no, but then you think, what am I doing or presenting that makes her think that? This person is a sweet lady who also has an autistic child. She has done a lot for her daughter and her daughter has made strides far above where Chris is now. However, she’s also almost 8 years younger than Chris, and when Chris was 2-3-4 years old HE was strides ahead of where he is now. I just don’t know if it’s truly the special diets, meds, pills, special doctor visits costing hundreds of dollars, special therapists, that make her daughter better now, or if it’s her age? I truly hope to God she is still advancing and excelling at the age of 14. I pray she is.

I had a monster migraine today with vomiting and diarrhea. Ugh. I am so tired, it’s 3 a.m., I have to be up at 5, and of course Chris is awake. Well, at 5 I guess I can go back to sleep a little, just have to get my husband off to work and then go back to bed until 6:30. Have to be out the door at 8.

About what is missing, though, I don’t know. Normalcy? A family vacation without worrying about Chris running off or doing something embarrassing? Eating out as a family? Going on camping trips on the spur of the moment. Going to PA to the mountains for the day. We still do go on rides and it’s fun, but it’s just such a worry all the time, will Chris be all right?

I sure hope some of the things we’re researching can help him so he can live a more normal life. And so we can.

I really want to write again. I have a book I wrote years ago, not worked on it in almost 10 years. I need to work on it. Maybe the next time I’m up late I will. I still feel results from this migraine so won’t tonight.

So does anyone love Degrassi the Next Generation as much as I do????

Here’s some more LJ cuts – first a survey from 80’s stuff —
…..Do You Remember these……
-Bands/Singers (If so put one lyric in from them)-
Guns N Roses: I LOVED this band – don’t know quite why. Just not as stupid as the stupid metal before ha ha
Def Leppard: Omgosh I remember watching the Foolin’ video with my friend Lisa
Warrant: Yes, but not what they sang – was it Cherry Pie??
Blondie: 10th-11th grade -yep.
Styx: I love Styx, still do. Sailing away is one of my favorite songs to sing with DH as he plays the guitar….
Journey: Lying beside you here in the dark…… and then there was Separate Ways which was my blessed DAD’S favorite song! I loved Journey.
Pat Benetar: Shadows of the Night – used to belt that out all the time (I do sing, a lot, and that one was a great one to sing!)
Motley Crue: Not a great fan, but there was a song Home Sweet Home or something by them that was cool.
Poison: Sorry, one of those annoying stupid bands – every rose has its thorn.
Heart: I loved the 70s stuff – junior high – yeah! Barracuda def. rocked and reminds me of the jukebox in 7th grade.

Jellie Shoes: Never did.
Spandex: duhh.. Nope.
Side pony-tails: I think I may have done once or twice in college.
Leg Warmers: Still have them.
Big Hair: That’s me, I have naturally curly frizzy hair so that was the only time in my life my hair fit in!
Madonna: I loved Madonna in 1984! I wanted to BE her (that didn’t last long though, esp. after I kinda rededicated myself to Christ, etc.)

Fraggle Rock: Never watched it.
The Smurfs: Never watched it.
The Carebears: I still sleep with Friend Bear – I’m serious (DH got for me for our 1 month anniv. in 1984). AND each of my children have care bears!
Strawberry Shortcake: Never had.
Charles In Charge: Scott Baio (cute!) but never really watched the show – I was more into the Happy Days and then Joanie Loves Chachi days – anyone remember that? And wasn’t he in a baby movie too, look who’s talking or something?
Teenage Mutant Ninja Turtles: I was too old but my nephew Brad (who just graduated from high school!) LOVED them!
Alf: I was too busy working to watch it.
Family Ties: LOVED IT. My family taped it for me while I was at work so I COULD watch it!
Three’s Company: Take or leave.
Miami Vice: Never watched.
Punky Brewster: Never watched.

The Lost Boys: I think I saw it but can’t remember much about it.
Pretty In Pink: MY FAVORITE MOVIE OF ALL TIME! I just got it out of the library and watched it like 3 times.
Dirty Dancing: Pretty close to a favorite too — I love the rich girl/poor boy – rich boy/poor girl movies!
The Breakfast Club: I STILL have never seen the whole thing. I HIGHLY recommend the Degrassi Next Generation episode that mimics it, also.
16 candles: ANOTHER favorite – just took out of the library too!
Fatal Attraction: Okay – a little gross.
The Gremlins: I HATED that movie – gross!.
ET: I have never actually seen it, and have NO excuse as we actually now own the movie!
Back to the future: I LOVED these — especially the first one!
Ferris Buellers Day off: Yes – can’t remember real well, though.

Toys/ Misc Stuff from the 80’s-
Glow Worm: Missed that.
Garbage Pail Kids: Missed.
Cabbage Patch kids: Not me, but my boss at Orange Julius in 1983 was a Cab. P. freak!
Teddy Ruxpin: Nope.
Rubiks Cube: Nope.
G.I Joes: Nope.
Stretch Armstrong: Nope.

Here’s another survey – some of this I’m WAY too old for though ๐Ÿ™‚

It can be anything; a song, a person, a thing, or simply, what you think of them. What comes to mind when you hear the names of the following bands:

Jimmy Eat World – Never heard of them.
Evanescence – I love them, the two songs I’ve heard. Would like to hear more! What comes to mind? Some sadness and self-introspection for some reason!
Live – I absolutely loved them though I can’t remember what they sang – how dumb of me!
Garbage – Can’t remember much about them except it was a girl band, right?
Lifehouse – Not familiar.
Something Corporate – Not familiar.
A Perfect Circle – Again, not famliar.
Sum41 – Ditto.
Blink 182 – Seems I did hear this name but have no idea what the songs are.
Metallica – Reminds me of DH and how he loved them when I met him. They’re okay.
Guns Nรขโ‚ฌโ„ข Roses – I actually loved them, DH wasn’t crazy about them! Reminds me of when I worked at Orange Julius and this other kid there loved them too and he was surprised I did (I was married and, like, 23 years old!)
Blur – Not familiar.
Oasis – Okay – remember how they reminded me of the Beatles or something.
Nirvana – I was fascinated with them though at first I hated them. I just became really interested in especially Kurt Cobaine. I remember I was at work at the law firm when he died and my boss’s daughter came in and was almost crying about it and she was surprised I knew who he was. It was like I could see his pain and wanted to help him. I was also extremely worried about his daughter Francis Bean 1) that they named her that and 2) that how the heck was she going to end up with her parents being in so much pain???
Linkin Park – I’ve never heard them.
Papa Roach – Ditto.
Limp Bizkit – Ditto.
Staind – Hmm, seems I did hear them and liked them, but can’t remember the song.
Nine Inch Nails – Never really heard them much.
Marilyn Manson – Ditto.
Ramstein – Ditto.
Savage Garden – Ditto. Except for some reason I’m remembering A SONG named Savage Garden by some band with a red-headed singer from the 90’s or something?
Goo Goo Dolls – Liked them.
Good Charlotte – Never heard of them, but, of course, it reminds me of Charlotte NC where I want to live.
Maroon 5 – Never heard of them.


Something important on your desk: Everything! Probably my to-do basket is most important.
When you sleep you wear: A night shirt.
If you could afford it at the moment, you would buy: A 4-bedroom house with a garage, basement, and attic.
Something you don’t have a lot of: Money, and patience.
If your house was burning and you could only save 3 items what would they be: Our Alvarez guitar, some pictures, and a backup disk (better make one!) of our computer contents (writing, etc.)


If there were no side effects, you would enjoy being addicted to: Chocolate!
A time when you purposely hurt someone emotionally: I have never done this to my knowledge – did break up with two people but not to purposely hurt them!
A time you accidentally hurt someone emotionally: Above two breakups.
One person you have killed in your thoughts: No one.


Your 3 best qualities: Even though above I wished for more patience, I think I still have a lot. Loyalty. Peacemaker.
Your 3 worst qualities: Can’t make a decision. Too non-confrontational. Hard to focus on one task at a time.
You are embarrassed when: Chris yells really loud in the store.
The greatest physical pain you ever endured: Childbirth, but oh how worth it!
The greatest emotional pain you ever endured: C.H. breaking up with me in high school, then my breaking up with A.C. in college.
Your best physical feature: My eyes.


Emotion you hide most: Most of them. I do show love easily but usually hold back any anger, hostility, hurt feelings, I swallow them down.
The emotion you tend to experience most: confusion, weariness. But also happiness at being with my family, and sadness over Chris’s illness and other things at times.
The emotion you are feeling most lately: The above.
When you are angry you need: To write it out somewhere instead of swallowing.
When you are in love you need: More time with my DH.


One of your most tragic memories: Chris being diagnosed with autism.
One of your angriest memories: When a good friend talked about me behind my back in college.
A memory that makes you happy: All the times DH and I had where we just had fun, laughed and laughed.
Something someone can say or do that you find extremely attractive: Tell me I look thinner.
Something someone can say or do that you find unattractive: Lie to me.
Two things appealing about people: Gentle acting, honest.
A personality trait you find appealing: Honesty.
Your secret passion: I don’t know that I have any secret ones, but my passions are singing, playing guitar, writing, and art.
What you enjoy most about having a committed relationship: Growing older together and being there for each other.


Do you have a bf/gf if yes who?: Well, my DH.
What do you find sexy about them: His caring ways, his hard work, his sacrifices for us, his staying up all night with Chris so often for me.
Describe your bf/gf physically: Dark hair, beautiful brown eyes, larger build (but losing weight!) and medium height.
Describe your bf/gf’s personality: Hardworking, sacrificing, funny, creative, intelligent, loving. Can be impatient, swift-tempered, and distracted at times, too.
Favorite thing you like to see your bf/gf wear: Nice polo shirt and slacks.
What would you like your bf/gf to do more of: Not worry so much all the time!


If you had more time alone you would: I want to do all of these and don’t know how to pick just one — go to school, write a book, and play guitar and sing more.
If you had more patience you would: Be a better mom.
If you could change one thing about your physical appearance what would it be: Well, I’m already losing weight (11-13 pounds so far, depending on which recent day’s weight you take!) and 40-some more pounds to go!
If you could have one super power what would it be: Well, if I could make Chris well, I would.
If you could start all over… : I would have majored in music or art the way I wanted to so I’d not be looking back and having regrets like I am now.

Okay, it’s almost 4 a.m., I’m going to go see if DH can get up early with Chris so I can sleep a little….



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