Had a very hard time with my kids......
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| Tue, 08-14-2007 - 1:08am |
Just gotta vent here. BIG TIME. Very long....
Sat morning I loaded up the boys to take a trip to Hollister (2 1/2 hours away). I had the game boys loaded and Chris had his MP3 player loaded up thanks to Tony. Tony stayed home. We went because Chris and Kaleb are 1 yr apart (known each other since the age of 2 and 3) and Kaleb was having a party
The first 2 and a 1/4 min were WONDERFUL. Nic played with his GB and Chris just listened to his MP3 player. Okay the last 15 were bad, but you know I can handle that...
We went because we haven't seen them in awhile and Kaleb was having a summer party...
We get there, the kids change into swimming suits and swim but it's only 78 there and not hot like it is here. It's normally 100 plus during the summer and the water's naturally warm (at our house). Both boys bolted out and got dressed. No biggie. But they separated from the group. My boys like heat.
Anyway...
So alot of the boys ventured into the house to play Guitar Hero... Chris separated himself. He wouldn't engage, he wouldn't talk, he wouldn't join himself into the group (even though he has a guitar hero of his own). He sat in a corner in a room that had no one in there to just sit and listen to his music. I tried to encourage him to join in with the other kids but he just wouldn't. Nic seemed to do okay, but it was obvious that the sensory issue's bothered my kids.
Then the hip hop dancing started with the loud music and both my boys shied away from it.... Went into the other room. Other sensory issue's I think. The music was very loud.
Okay then the party started breaking up and my kids were fine with just Kaleb and his little sister and no loud music. They did great one on one with them.
Okay so Yesterday (still at my friends house) Nic (my youngest starts ticcing really bad... He has severe Tourettes... Swearing tic's and all) so I get nervous.
I get nervous because the hardest tics for me to deal with are the belching ones and the Swearing ones (not just swearing but yelling out body parts ect) and these are the things that make me get mixed up between "Is it a tic, or is my kid being bad and being 7?" But then I feel bad cuz he's not bad, he's a good kid, but in public I get anxious and I have a problem dealing.
My friends are wonderful tho and are totally fine (except her husband does the devil's advocate and started asking me about changing Chris's diet and I tried to explain "I just can't do it, cuz he would starve doing that"
Whew anyway, not over yet here.... long story short Chris perservered on going to a certain restaurant that he's used to going to everytime we go to this town. So we go, even though I know Nic is Ticcing and he will tic in more sensory area's like a restaurant with big crowd's and when he's more stressed or anxious. But I had to take Chris because he talked about it all weekend and obsessed over it (he obsesses over food) So we went thinking I could get Nic under control.
NO WAY IN HELL.
Anyway Chris was fine but Nic, did all of his tics. I can take tics like his fred fred burger in a marv albert kind of sound, his face stuff, most of his vocals, or his finger sucking.... his lip licking, but I have such a problem with the swearing tics, the drawing bad words or picture tics with crayons, his laughing and showing other kids his pictures and of course they would laugh... I was a nervous wreck. My friends who are adults didn't care, they love me and were very supportive of me because they understood, but I was still a nervous wreck. I felt bad, because I was getting mad at my son, but being on a Tourette's board the best thing is to ignore this. But how can you separate yourself from being a mother and ignoring this?
I think I need to work on this more, because at the same time I was mad at him, I felt bad at myself because I knew he really couldn't control himself. I kept on asking him if he could replace the tic by doing this, that or whatever with the tic. But he couldn't.
One nice thing is when he was doing the belching tic over and over again the man behind us smiled real big and laughed and said I'm about to ask him to do a contest lol. I went outside for a ciggy later and he was out there and he was really nice. Found out he was a drug and alcohol abuse counselor and was very accepting to things that are different. Really nice guy.
The people sitting behind use were cops and started laughing. I was so nervous I told them he had tourettes and just couldn't help himself and I have to ignore it, but my god it was so hard to do. They gave me a weird look but even though your a cop you might not understand Tourettes....
Okay so we finally finished eating late and drove home. We all went to bed.
The next day (this morning) we had to leave. All of a sudden chris freaked out and woulnd't move. Do you know how hard it is to move a 110 child to get in the car to leave when he won't do it? He is doing weird things with his eyes, crawling into the back into the car and claiming he isn't leaving to go home because he's not ready to say goodbye to his friend Kaleb.
THANK GOD my Friend Susan decided to keep Chris and bring him home later tonite. I just don't know what I would of done. He is on Risperadal, but he was getting stuck, and I knew there was nothing I could do at this point. I felt he was about to blow.
There both coming here tonite to spend a few more days with us.
You see I think I changed things on him. The whole summer I have had trouble sleeping so I can't fall asleep until about 2 or 3 and end up sleeping late. He knows that. SO I kept on saying "Chris I'm getting up early today to go home."
He kept on expecting me to get up later (like I usually do) and this morning I got up at 8.... Then he got upset because I got up earlier. If I had only got up between 10-12 he would be happy, knowing he could spend more time with his friend. Even thou I got up at 8 and didn't leave until 1 lol.... I changed the time on him. He has a thing about time. I should of known, but I didnt' get it. Heck he has a problem understand why the car clock says a different min on the house time, or the computer time.
He probably thinks he lost time, and I just didn't get it earlier.
Hard weekend, hard hard weekend....
I just had to release this...
Lainie

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((((Oh Lainie))))
I'm so sorry you had to deal with all of this. I would've been a nervous wreck too. But you kept it together and made it through. I don't have any words of wisdom for you, just wanted you to know I read every word, and you're in my thoughts.
Amy
((((((((((Lainie))))))))))
I think you are truly wonderful. You handle yourself like a lady in the most difficult of circumstances, and I really admire you for that.
-Paula
visit my blog at www.onesickmother.com
(((Lainie)))
What a yucky weekend.
And as for "Do you know how hard it is to move a 110 child to get in the car to leave when he won't do it?"
My answer would be, "No, but I know how hard it is to move a 34 pound child into to a car when he won't do it, so I guess it must be about 3 times as hard."
I'm glad you got to meet a nice stranger who took the tics in stride. I find that contact with people like that can really keep me strong.
Sidney
{{{Thanks Guys}}} Thanks for the support. :).
I was feeling really good until a few hours ago when we met with the school for a meeting. Chris was AGAIN Denied for an IEP. I said but I thought that with a doc's dx he automatically qualifies because it's a disablity. They said not educationally wise tho. And since they don't see his autism at school, then it doesn't count.
UGHHHHHH
Just wanted to send you big hugs your way...
Christine
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Christine
{{{Hugs}}} Backatcha again guys. I was so low, but you guys made me feel good again. Thank You.
Lainie
Oh Lainie I'm sorry to hear your nightmare story.
You are such a strong mom and you don't realize how deep you dig sometimes for those kids.
I feel you should expose your kids to as much as possible.
Hold your head up high.
((hugs))
It's over now and you're home
Nora
http://i153.photobucket.com/albums/s225/irishwildrose/pp2.jpg
{{{Nora}}} You made a great point....
You know my neighbor/friend came over tonite to chat for a bit. She brought me a six pack LOL.
She is an Aide for a special Ed class with low and high functioning Autistics.
She told me a story about a mother who told her that she never takes her child out of the house because of her childs behavior. Never, this woman just doesn't. My friend told me she reported her to the REgional Center because that just wasn't right. You can't keep your child from the world. That would keep them from learning new things you know?
And I said wow, your right. When my children act up, I have to realize it's other people that will have problems, not me, and If I have a problem, then it's mine. I can't keep my kids from the world just because it's hard to do. They have a right to experience things like party's and restaurants, camping, Disneyland and environments that stress them out (but have fun at the same time).
It was a great thing to hear as I took Nic to the school to look at classroom schedules tonite and there was a huge crowd (a trigger for his tics). The schedule wasn't posted until after 5 tonite and school starts tomorrow so you could imagine how many parents and family's showed up. Well Nic constantly did his belching tic and I had many mean and bad looks from other mothers. I was a nervous wreck as he couldn't stop and I couldn't control it.
I guess I needed to be reminded that if I have a problem, then it's my problem, and I don't need to explain to every person in life about my childrens conditions you know?
It was a great enlightenment moment. I guess I just need more practice with this.
Lainie
I am a teacher in the same school district as my DS & they tried to tell me the same thing. I wasn't concerned about not getting a IEP, but they were saying no for testing to see if he qualifies for a 504 too because he had all As & Bs so there was nothing affecting him academically. However, I disagreed. DS would have had straight As like last year but was not completing all of his work due to distractibility and not completing work due to OCD tendencies. He had already been in so much trouble at school last year & I knew his teachers & the AP saw that something was going on with him. I'm thinking how badly do you want him to hurt someone before you help him? Well, I actually might have said that, don't remember, LOL! I had my list of all of his AS , ADHD, & OCD symptoms to fight for his need. I think I might cried out of anger & frustration & finally convinced the school psychologist to test him under other inpaired, which they did. This was before the dx. Now we have our 504.
How can they not supply at least a 504 plan to a dx student?! I would suggest hounding them until they comply, calling the SpEd dept. of the school district, or possibly threaten to or go tell your story to a local news station. Bad press always gets those wheels going!
Good luck!
Janet
Hi Janet,
I so agree, and for heavens sakes my child missed 2+ months of school last year because he emotionally couldn't cope and had a break down. I mean come on!
I called his advocate yesterday and today with detailed messages, waiting for her to call me back. I also called CVRC and left a detailed message (even thou we are waiting for their decisions on whether they take him on as a client...). If they do (soooo crossing our fingers here) then I will have access to their lawyer and they can come and push the school with me. Dangitall tupid school.
Thanks for your support and ideas guys. And Janet, that media idea is sounding better and better.
Lainie
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