Exhausted, a little movement.

buddy

New Member
Well, a picture says a thousand words I guess.... I don't think anyone expected the big color pics I brought to be so horrible looking. I think they also didn't expect to hear that the doctor said he can't go to school. I was super strong until the very end when everyone said tell Q we are thinking of him and really do care about him and you and the advocate said that is the saddest part of this whole thing, a functioning team was destroyed... and I started bawling...had to turn around and compose myself.. only a few minutes but I pulled it together and pushed on.

They went through the incident....Nothing made sense and it was clear they knew they had an issue no matter how much they wanted to pin it on Q they couldn't. I showed them how Q told the doctor and mr sp ed admin confirmed that Q received tylenol afterwards for a sore wrist. I saw the Special Education directors face smush up when she heard that...

It was painful to talk about. They said, we are not at liberty to tell you what will happen but you need to know that this is not being ignored and it is being addressed.

Our psychiatric was a rock star. She asked over and over if the tone of the IEp meetings was as the law advocate said since she feels she is biased.... I said it was like nothing I have experienced in my career. Not as a professional and not as a parent. The home coordinator admitted that after his second meeting there he told the advocate (I wasn't there) that he was sure Q would be out of that school very soon. then home psychiatric spoke...he is a gentle giant. He said that prior to the principal being there, there was a spirit of cooperation and problem solving. Even recently there was a meeting where people tried to say what they thought had gone better and right and at the end of even that meeting the principal's attitude was well did he ever cross to the other sides of the lockers...he kept saying he had no idea why that was even an issue... anyone can go anywhere and he was never told he can't walk around the school like anyone else... he was just trying to make a big stink. (no classes on the other sides of the lockers anyway...so dumb) he said principal had no intention of problem solving and just wanted to list problems that he woudl not tolerate. Sp ed coordinator said, yeah but I told him it would need to be an IEP process and decision and I said, no one even heard you and he certainly didn't... it was a small statement at the end of an hour of ranting and raving and pointing fingers and raised voice to me etc. I think home psychiatric's words carried a lot of weight.

I have a state restraint form to fill out. Makes me ill that I have to do that. But I am going to of course. It is just that it makes the seriousness of it so real.

So we discussed what I wanted. they had a whole thing written up about why they thought SUN2 was such a good choice. I then explained what was missing from the list....why it was NOT a good choice (the cons). I said it is not that I dont agree with the pros, but I am torn about the cons. It is a limited school in many ways and it has a load of risks. I said we know Q learns best in functional environments when he is out in the community or in an activity. He needs to learn skills that will allow him to go places and do things that are productive. I talked about part time at SUN and they even talked about early admission to the high school to work on having less transitions. At the high school they have more options for Special Education not just Autism Spectrum Disorders (ASD), because he really could benefit from some of the Developmental Coordination Disorder (DCD) classes as long as the teachers use Autism Spectrum Disorders (ASD) accommodations. I have said that before but their class was large and some of the kids were super high needs too. We talked about his horse back riding and other therapies.... He will have home bound starting Monday till we figure out a new plan. I discussed his para, the need for specific people we discussed how the program was derailed from the beginning and now there is no way to know if he can be ok....

Oh, I will have to finish later... Q needs some help... He can't stop talking.. he is so anxious.
 

DDD

Well-Known Member
Of course you are exhausted. Sending supportive hugs. Continue when you're up to it. DDD
 

buddy

New Member
OMGosh you guys... This kid absolutely could not to save his life stop talking.. WAY beyond his drive you crazy talks a lot moments. Every single concern in his life is coming up... toys that broke 8 years ago, times I wouldn't let him do things, food I wont let him eat, coyotes attacking him outside... it just goes on and on. He said, mom, tell Integrated Listening Systems (ILS)-R that I can drink "muscle milk" (a protein shake) but if you are the one who tells her when I want to just have her find out then you will pay for that because I want to tell her and then if she says no then I will say it is your fault because you didn't tell her but if you do then I will be so mad at you... and on and on and on... I thought I'd rip my hair out and I had to just think to myself...What he is really saying???? "mom I am freaked out of my mind not knowing where I am going to school and I really want to go to my same school"

He is demanding all these things that are totally impossible. Yesterday I had to go fax my time card.. takes 15 minutes so I do let him sit and watch TV while I run to the office to do it. I went down to the garage and he ran after me... I said you have no shoes on and it is freezing I will be back in 15 minutes so he goes up and I think he is waiting like always...but he went to get his shoes came down and locked him out (you need the security key to get up the steps to our house)...so he runs to our neighbor's house (thank heaven) and he borrows their phone to call me but I was pulling in at that point and the cell wont answer underground. He saw me and ran to kick the car as I was pulling in.... I got out and he came and grabbed me and hugged me... I am so sorry mom, I thought coyotes would attack me. I have not seen him like that since we moved here 6 years ago. Makes me crazy they did this. But I was so proud of him for stopping his upset and telling me what was making him scared. I also loved he went to the neighbor's house...they are so dear and they are the ones who helped when he had his seizure outside.

This is not a place I thought I would ever be in. But I bet many here can say that... (all???) So wonderful to have you guys to share it with.
 
T

TeDo

Guest
Wow!!! I am so glad, and he's so lucky, that you can see through the incessant nervous talk and know where it's coming from. THAT is a hard lesson for even parents to learn. Good For You!! I am even more glad you had such a strong, vocal team with YOU. That has to be somewhat of a relief.

Absolutely fill out the papers.

Of course they are going to try to PUSH the program they wanted all along. They will say anything to get THEIR way. At least they are getting an idea of who's REALLY in charge.

I am very proud of BOTH you and Q for many reasons. He's feeling extremely insecure right now and he's lost something "big" and is afraid of losing you too. I think he's handling it all beautifully. ((((HUGS)))) to you and to Q if he'll let you!
 

buddy

New Member
That is the real thing TD, he is like hugging me before he even realizes what he is doing... it feels like a little kid, it makes me realize how deeply this is affecting him. I love he will let me comfort him a little bit. His Integrated Listening Systems (ILS) worker texted me just before they came home.. she said he has not stopped talking since 4:30 pm! she said he goes from saying really inappropriate things like he is going to get them back to saying he wants to go to every state in the USA to see if they have a chuck e cheese etc... poor kid.

He is home now and calm... I think he got it out of his system. He had been with my mom and did so great...they went to eat and played at her house. It all started when I got back from the meeting and I think he thought it would all be solved. He is mad that he does not have a solid answer so really if this is as bad as it gets he handled it ok.
 

DammitJanet

Well-Known Member
Tell him he would see they coyotes with his spy glasses. They wouldnt see him but he would see them. If he cant see them, they arent there.
 

Ktllc

New Member
Big hugs and sending lots of positive thoughts.
From the outside looking in, I think it would be great if you (your team) could make a program work for Q within the highschool. I understand there are some obstacles or cons to overcome, but it would be Q's dream come true! Especially if he was to go this year. I know it would be to avoid too many transitions, but just magine how proud Q would feel!!
Praying everything turns out for the best in the long run.
 

buddy

New Member
Tell him he would see they coyotes with his spy glasses. They wouldnt see him but he would see them. If he cant see them, they arent there.
YES! Like when my mom bought one of those netted garden hats (yeah that was cute) because he is so afraid of bees and he wore it every time we went to a park or anywhere he felt worried about bees..... It was just enough to take the edge off.
 
I remember how drained, totally exhausted I used to feel after being at one of those meetings. Hang in there... You're doing an excellent job:warrior:... Nothing to add right now, just continuing to pray for you and Q... Many hugs... SFR
 

buddy

New Member
I remember how drained, totally exhausted I used to feel after being at one of those meetings. Hang in there... You're doing an excellent job:warrior:... Nothing to add right now, just continuing to pray for you and Q... Many hugs... SFR

You know, when Q was in 3rd grade in our old district I had been in a two year battle with them and had ARC for an advocate. They were good but finally said, you can fight this and win but it will be years... I would move. SO, I did. I was a wreck and it took a year and a half for Q to settle down... he was afraid of everything and thought bad guys would shoot him in his sleep through the walls etc. Similar to now... all his anxiety rose up.

So, It makes me look at how far BOTH of us have come. He is having this anxiety but is dealing with it differently. Has more verbal skills and is using me not just as his punching bag-as he did back then...now nothing so serious ever, but for comfort too-hugs and talks etc. He is talking to his Integrated Listening Systems (ILS) workers and even his therapists at his private therapy place (he used the story as his TOPIC of discussion in speech Tues). I am proud of him for that.

Last night he was sitting next to me. He said, "Mom, I'm gonna tell you what happened." I thought...what new info is coming here??? "I was holding that anger all day. Finally, I just got too mad at him." I told him I understood and that is why we are working on other ways to deal with anger. I reminded him that we all get angry but you dont see other angry people hurting. He said well they do in sports. I said, yes and since that confuses you that is why we are not watching fights and things on sports anymore. He is still not happy about that but he said.... If I can work through it can I watch again some day? I said, yeah... if you have 12 months of no hurts on anyone (my go to time line... if he could do that he really would have come a long way in many areas and by then I could make a different deal...one hurt and we go back etc....it wont happen so I am not worried). BUT, then he said..."That really didn't work out well" Again I said, I know...but we will work on it (he meant how he handled it in school... added that now he is paying for it). He also said, "I have to remember that people dont have the safety equipment that they have in sports...so it is not fun for them to push and fight. "

See why I can't do martial arts and other sports that involve anything rough... he just has too hard of a time separating it all out. I didn't realize he was getting so obsessed over just the hockey FIGHTS..... I thought he was into the game. He was watching them on you tube at school so I asked them to block it a while ago. His you tube on his galaxy player is some how not working well (wink) so I am working on that...LOL. Our computer is not online anymore... he can only do home programs.

As for me, at that point--back when we lived in the other city up north.....(6 years ago) I did think I needed medications. I used Paxil for a couple of years. I have not felt that need at all and trust me, I would not hesitate for a second because I wont go to that dark place. I know the medications help me so if needed I have no problem using them, it is in our genetics big time esp. on my mom's side. I actually feel great about the fact that even when I am totally stressed situationally, I push through. I have some real life people to talk to and have used them (not common for me), even talking to one of my sisters a little bit (I tend to protect my family. They worry so much and then I try to reassure them which they dont ask for.... that is on me, but I just do it--maybe the big sister thing?).

Mostly I swear I was lead here. We were in a decent place when I joined this board. I did not anticipate things going down the drain. I do think the prayers from all of you (and my FB family and friends, though they do not know near the details you all do of course, just general "we are having issues" typically...not my deeper feelings and no specifics about people/positions they hold etc.) have made a huge difference. On many levels, not the least of which is just the comfort of knowing people get it.

So, when I tell you all thank you, it is not just MN nice. I really deeply appreciate the time you take to notice even my little nervous posts and to stick with me when it is a bigger issue. I only hope I can pay it forward a little.
 

lovelyboy

Member
Glad you are holding head above water!!!! So proud of Q!
I agree....there is a reason why you came to this forum! You have helped us so much already!!!
X
 
Oh, Buddy. You guys must be fried. Hang in there. I am glad your psychiatric was a rock star in the meeting.
I totally get that he can't watch certain sports on TV even. It's no fun, but I get it. You are a good mom.
You are one of the people I think of when I mention how awesome this board is.
 
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