AnnR

It's so late here and I'm heading off to bed, but I wanted to respond to your post.  I've had a lot of disapproving looks over the years as well.  Adrian, being 16 now, can usually behave himself in restaurants and such, but because he has almost no social skills, he can still act in a way that gets a whole new set of looks because he is such a big guy (6ft) sometimes acting many years younger than his age.  But I just figure, I'm not going to see those people again, who cares what they think.  Not that I don't correct poor bahaviour, because I do, but dirty looks matter not to me.  I have encountered a few thoughtless people over the years, but luckily I've met far more caring, considerate people.  I think everyone who has posted in this thread is evidence of the goodness that exists out there.  You're right about being worn out, but the love they give, and the feeling you get when you know that you've done something that will truly make a difference for them makes it all worth it.  Only good wishes to you Ann. And to Espen.

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

Thanks, Trace.  I am still working on the getting over how everyone else responds.  I live in a small town, and I know someone literally everywhere I go.  In the long run, I think this is a plus for my son, as he already has lots of friends in the community.
hey, does anyone have any magic answers to this?  Ok, any answer at all. I would so love to get the point across to my kids (I have a 4 and 2 year old as well as 7 yo Espen) that when they behave somewhere we will get to do it again, and when they dont, we dont do as much fun stuff.  I am trying to get them to realize, for example, if you leave the chicken yard when I ask you, I will bring you back soon.  I am not being very eloquent, but hopefully you know what i mean. 
Yes, we have some wonderful people in our community, like all the folks who helped my smiling son dance along at a square and contra dance last month
night, all (was up at 4, drove 210 miles to Anchorage, had an appointment, drove home same 210 miles)

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Peace, Ann

Ann, I just follow through with that.

 My kids know that if they act up in the grocery store I still have to shop but I wont make it pleasant for them. If they act up in a restaraunt they wont be going out to eat again any time soon. f they fight in the toy store you can bet they dont go back for a looooooong time.


  Its hard because there are just somethings that you have to do no matter what. If you leave the grocery cart in the middle of the aisle and go home, they pretty much win. They obviously dont want to be there if theyre acting up. If you make them stay put and finish your shopping they arent happy but they realize that you arent messing around. Of course there has to be some punishment for acting up in the store Ours is usually no TV for the rest of the day. That gets them where it hurts in our house.




 

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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.”

Hey all!  Glad to see everyone back!  I was lonely over the weekend!!

Binny, you are so right about the kids in stores.  I always laugh when Dr. Phil says that if your kids are acting up, you have to be prepared to leave your cart and walk out of the store!  Why?  So I get home and have no groceries and have to make a second trip out to do the same errand?!  I usually warn my kids of what will happen when we get home, like no computer or going to their rooms, you know try to give them a chance to change their behaviour.  They don't act too bad now, but Adrian tends to ask for stuff at WalMart and I just tell him that he can come, but I am getting what I'm going for and nothing else.  If he asks me for something, then he doesn't go the next time and I let him know it's because he betrayed my trust.  Chelsea used to be horrible in stores when she was tiny.  She wouldn't sit in a cart, she'd run all over the store.  I had to go with my mom, just so I could shop and she could tend to Chelsea!  Thank goodness THAT ended!  There certainly are benefits to them getting older, but then a whole new whack of different problems just comes in to replace the old ones!  Anyone who thinks raising children isn't work, has never had any!

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

Hey Trace. My little brother, who is almost 16 actually, has autism and I noticed you're from St.Catharines..Becuase that's where I'm from, and  i think my brother was with the Niagara Support Services people. We'd have someone come to our house a few times a week to help him with hmwk, and to play games with him and help with his social skills. That helped. Plus the government pays for it, so if you don't know about that, you should check it out, they are really good. He was really severe as a child, but you would actually never know now. He's a sport fanatic, plays on pretty much every team at school and outside and is one of the funniest greatest kids i've ever known. How old is your son? I should have read more of the posts, but I just thought i'd write some from my own personal experience.

the other day, the funniest thing happened. when i was walking my dog, some kids i know down the street, asked me if i was a parent. I mean i'm only 20, and their olders sister is my sister's friend. lol. that just made me laugh. lol...so kids can just be very funny sometimes.  

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*~*Megs
Wouldn't it be great if the band never ended
Tá tú go h-álainn*~*

My son Adrian is 16, and although he is autistic, it's not 'full blown' autism.  He has Asperger's Syndrome which is high functioning autism and I've actually been quite lucky because Adrian is very high functioning.  I wish I knew how to post a link (I'm a computer quad), but anyone who wants to know more can just google the word Asperger's syndrome or go to the autism society's website.  Because Adrian is so high functioning, he doesn't qualify for a lot of the things I think he needs.  Very many aspects of the governments 'services' really aren't fair.  For example, Adrian has a disability that he will have his whole life.  Due to the problems that come with AS, we don't know if he will be able to hold a job, though we're certainly hopeful.  Anyway, I tried applying for disability benefits for Adrian so that when he reaches adulthood he could start claiming them if he needed, and according to the government, he doesn't qualify.  Mostly because he's not blind, deaf, physically handicapped, he can dress and feed himself and he's not crazy (sorry if that's not politically correct!).  It's ridiculous. I just go one day at a time.  Some days are better than others, but I love him no matter what.  I also have a 9 year old daughter, Chelsea, who does not have AS (it's common that if one child has it, another will too).

Yes, kids are funny sometimes!  I have many of those moments with mine and with a lot of Chelsea's friends.  Your story reminded me of one.  When I was 23, I had just gotten married and was working at a newly opened grocery store.  One of the teenage guys asked me if I was still in highschool.  I was SO offended!  I mean, I felt like I was so old, so mature, I was married for cripes sakes!  But NOW, I just wish someone would card me at the liquor store!  And stop calling me ma'am!!!

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

Thanks, Trace and Binny.  I get what you said but what is hard for me is the fact that in spite of that I say, " I expect you to act thus and so or we wont be coming back soon" before we go in to something fun, or warn of lost priveledges when we are at the store or whatever, the kids dont seem to GET it.  Espen has a cognitive reason- it is really hard to teach him these things, my four year old girl is plenty bright but doesn't seem too responsive either. And I do follow through!  I do have extremely stubborn kids.  Espen is resistant and Brita is willful- she gets her idea and wont let go  I had to not let her go to an anticipated BD party because she was absolutely freaking out because I had wrapped the gift while she was at preschool instead of letting her do it.  Even going to the door and seeing the kids didn't help.  Anyway, that kind of thing just bums me out in parenting.  Espen is so hard to direct with a task that EVEn on his biggest day of the year, the day of the fair, I had a terrible time getting him ready to go out the door because he'd been excited about a new video.  So maybe my problem is that I get so tired out because the Espen interactions take so much energy, and I have a hard time with the tedious discipline of the other 2 (the 2 year old seems to be doing ok, for 2)
This kind of thing is why I appreciate having this thread, as I MAY find some understanding here.  Thanks, guys
PS, I really dont think my daughter has a disorder, I just know she has been extremely willfull always. I was not right on that because after Espen, I was so glad to see her WANT things, which he really didn't
PPS I realized that my comments on Espen here were pretty negative; see other posts to see how proud I am of him.  he is doing VERY well, really

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Peace, Ann

Don't worry Ann, we know you're proud of Espen, just as you're proud of the other 2, but parenting is a tiring, thankless job.  I had my own breakdown over the weekend.  The weight of the responsibilities piled on me is really beginning to take its toll.  I feel like absolutely everything is on my shoulders.  I am the one the teachers call, I am the one who has gone to every meeting with the schools about Adrian, I am the one who wages all the homework battles, plus doing all the cooking, laundry, housecleaning, etc.  My husband seems to think that because I don't work outside the home, then everything in it is my responsibility and I'm getting pretty tired of it. (ok, vent over!)

Your daughter, I think is just pushing you to see how far she gets.  I don't want to put this wrong, so I'll use my own situation with Adrian as an example.  Chelsea is 7 years younger than Adrian, so we have always tried to keep the peace with him to give her some peace.  But in the process, I think what she learned was, if you yell and throw a tantrum about something, mom and dad will give you what you want, because that's what her little mind interpreted was happening with Adrian.  So alot of times, Chelsea doesn't understand why a temper tantrum gets her in trouble, yet it most always got Adrian his way.  We screwed up on that one.  Now that they're both older, neither are getting their way for bad behaviour.  It's all trial and error, and I'm sure you're doing the best you can, Ann.

Oops, speaking of doing the best, guess I'm not right now, cuz I've been typing away instead of getting Chelsea ready for school!  Gotta run!!  I'll be back on later.

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

AnnR Ah dear Ann you are walking in my shoes! I too have 3 children and Alex ( with Tourettes syndrome) is my oldest. he has a sister 2 years younger, Laura, and a brother 4 years younger ,Chris. The young years are hell, no doubt about it. My best advice, grin and bare it, while humming Ordinary Day. O.K. thats not going to make it easier on you, it just changes your state of mind sometimes. My "kids" are now 18, 16, and 14, I can't say that it ever goes smooth we still evaluate where we go and who will we take. Lots of things that we dreamed of doing with our kids never got done. T.S. is a hereditary disorder and of course, Chris is ADD possibly ODD, and Laura sure has OCD tendancies. You really have to plan in advance and be prepared to change all your plans at a moments notice. We definitly disapointed our kids many times by not attending a function, or not participating in a big family event. You really have to look after yourself mentally speaking, so that you don't burn out. I was fortunate my husband is very supportive and helpful. Often we would split up and one of us would take those who could behave, and the other stay home with the disapointed one trying to make their day in some way special too. Easter dinner was the one thing my husband seldom took part in as he always put it, "you go have dinner with your family and I'll stay home with insert child name here that started upchucking at midnight." For about 5 years thats how it was. Ya gotta laugh or you'll go nuts. Trace;  Sorry you where lonely this past weekend, twas my weekend to work. It sure is quiet some weekends around here though you are right about that.

I received a note pad for christmas last year with a realy neat saying on it i just have to share, " Raising teenagers is like trying to nail jello to a tree." its so right!
Keeep up the Faith!

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

~Northern Spy~The Apple of my Pie~

~Audrey~

Audrey--

Nailing jello to a tree!! LMAO!  I almost spit out my tea!  That made my morning!  I was, at the momen,t feeling overcome and resentful towards my husband.  It is pouring rain here (coming down in buckets), thunder and lightening, I don't drive and had to walk Chelsea to school.  I was literally soaked when I got back.  But where's Jim?  Sleeping.  Now, he does work at night, but sometimes it's difficult for me because I feel like a single parent and the fact that when I tell him that we walked in the pouring rain, he won't give me any empathy because he thinks if he does, that means the next time I can get him to do it.  You're lucky to have a supportive husband.  If mine was supportive, helped out with the house or kids, I probably wouldn't have felt the need to start this thread.

I know what you mean about staying home from functions.  But usually it has been because I don't want to spend my whole visit talking about AS.  There's another thing that bothers me.  Even at Jim's family's functions, people are always asking ME about Adrian's AS.  Jim has truly never really educated himself about it.  He acknowledges it exists, but it's almost like he wants to pretend Adrian is 'normal' so it won't reflect badly on him.  A couple of years ago, a friend of his called and we were chatting and I mentioned that Adrian has autism and he had no idea.  Jim had never told him.  I think he is embarrassed about it and that infuriates me.  So as you can see, our marriage has suffered a lot over the last few years.  We've been married 18 years, together for 24, but I swear, I don't know him anymore.

Hope I'm not bumming anyone out.  It was a tough weekend all around, so I'm still kind of feeling it.  I'm glad I can come here for support.  I am, however still laughing about the jello saying!  I have to share that with my sister (she has 4 teenagers!)!

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

I think I'll put some GBS on.  The bys never fail to lift my spirits!

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

well I had Karissa's IEP yesterday and she has met 2 of her 3 goals! Im pretty happy about that.


She is doing fairly well in school they upped her OT though so hopefully that will help. They are working on her core movements at this point. She still has a tendency to rock and gets really stiff when she gets excietd. We have also had to limit her hugging again. We are trying to teach boundaries. The problem is she has 2 teachers, they job share so one is there Mon and Tues and half day Wed. The other comes in Wed after lunch and is there for the rest of the week. she gets so excited to see each of them that she hugs them all the time. They have limited her to one hug a day. I know that they love her and I think its wonderful but I think its consuing to her. We tried to institute a circle concept to her. Her family was in the core circle and it is ok to hug them. Her friends and the greeters at church ( long story but they love her) are ok to hug if you ask. Everyone else gets a high five or a handshake.

Its really hard because she is SO loving and joyful and its hard not to want to hug her. We have to set boundaries though because she would go with anyone. Literally. I had to approach her aide at school and say " unless you see me, my husband, or my son PLEASE dont release her" shes been really good about that but I worry.


 Anyway, she is doing well in school, mainstreamed about 80% of the time now so that is good news. She is taken out for language and math and OT. Speech is going well though.

Her therapist at school told me she would like to see some genetic counseling done becuase my girls seem to struggle where my son excells in everything. She said she would like to explore some kind of syndrome issue but she isnt sure what it could be.

 Anyone had genetic counseling done?

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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.”

My wonderful father, or fodder, or daddio(!) can always make me laugh.  I was just talking to him and telling him about this thread.  I told him the jello saying and he thought it was funny.  He had one of his own, which might give you an indication of what it was like for him raising me, my brother and sister:  raising kids is like being a suicide bomber, but you lived!  (Now, that's my dad's sense of humour, and I get get it cuz I was raised with it, so I hope that didn't offend anyone)  It made me realize that as I'm sitting here discussing with him the trials of raising children that I'm forgetting he went through the same stuff with me!  And being a parent never ends.  I am 41 and still going to daddy for help, moral support, money (!), as well as to my mom when I just need someone to listen who won't judge me, cuz they don't.  They assure me that I'm a good parent and they're proud of me, no matter what 'mistake' I'm beating myself up for making.  Makes me feel lucky on a day that didn't start out so good.

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

That's wonderful that Karissa is doing so well.  Chelsea is also a hugger.  A teacher actually told me that maybe she shouldn't hug her friends because they might not like it.  So I polled her friends and they were all okay with it.  But she doesn't hug everyone.  It's nice that your daughter has that much love inside her.  She's probably a joyful soul.  But not everyone understands why a kid is so affectionate, which is kind of sad.  (I can't remember, and you probably said early in the thread, but what is Karissa afflicted with?)

I have never heard of genetic counselling.  Sounds like they're looking for something in family members to explain what they can't explain.  Or someone to blame.  That's how I've felt with Adrian over the years.  That doctors, teachers, even my own husband, are looking for someone to blame this on.  I always say that there has to be a first person for everything.  Just because Adrian has AS doesn't necessarily mean someone else in our families did.  Especially when they don't even know what causes autism.  The last thing I was told was they think it may be caused by some sort of trauma while still in the womb.  But no one has ever spoken to us about genetic counselling, so I can't help you on that one.  Sorry.

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