Dear Friends, I have struggled what to write....

Discussion in 'General Parenting' started by buddy, Nov 21, 2011.

  1. buddy

    buddy New Member

    I think I am a little fried. Between the school issues and the behaviors.... and the worst is his health. Thank heaven we go to the neurologist tomorrow. She is the one who wanted him in the seizure unit. Every time I am going to post an update I have become stuck. The weekend went smoothly in the sense that nothing huge happened., He spent time lying down and told me he had a headache from time to time. Sunday we went to my dad's for dinner and all the cousins and two sisters were there. He asked me for Ritalain on the way there! He said he just can't stay awake. Of course I didn't give it to him, lol. He little by little started blurting little things. Then he fell asleep on my dad's couch. He woke when I went over to check and see if he could take his night time medications. He sat up and started threatening to throw the water cup and to spit at me because I was a f****** N**** B**** really how he strings every single swear word into one sentence adn says i t over and over.... it is impressive. My sister (nurse) was the first to say, he was so glassy eyed and now after the nap, it looks the same as when he went to the er. Yeah, I know. So i got him out to the car after he dumped water all over grandma and grandpa's floor. Swearing a storm at me...and adding the nonsense body part statements. Really so perseverative, kind of like delayed echolalia. He spit on me all the way home. I stayed totally cool on the outside. Told him since he can't be safe with the words he is choosing, I can't allow him to watch tv. He accepted it as it was all wearing down anyway. He chose to take a bath. That calms him. so that was good. Then he decided to go to bed. no arguments.
    In the morning, before medications kicked in... was really rigid and mean. (he was worried remember, his school schedule was changed and he didn't get his bus). I finally had to threaten a huge consequence... as usual, that stops the behavior for the minute you need it stopped, but it does nothing in the long run for him. Finally he did calm down and so got to go to school for his whole two hours.

    At school the nurse called me(I ws in the library) and she said he needed tylenol for a headache.... HOLDING MY BREATH.....

    the pattern again.... feels fake, may or may not fall, very crabby and blurty, says he is dizzy sometimes, then falls deeply asleep and or gets very agitated, perseverative. But this time, he seemed like just the headache part (we miss the little simple ones, and he just fesses up when he gets the headache medication) But nurse just gave tylenol then at 220 teacher said he asked her to help him move his chair because he couldn't stand up becasue he was too shakey and tired and would she pease help? He did all of his work. (alone in the little room) and finally had to lie down but the nurse did come and check his BiPolar (BP) which was fine. Teacher asked to check in what zone he was in...he said, "I am in green now but I really need you to not talk to me so I can rest and not get upset" WOW

    He is out with his Integrated Listening Systems (ILS) worker now and I haven't heard of anything yet.

    The administration at school left me alone and did not bug me to meet in private! the teacher had called and wanted me to sign a significant change form for the 4 days he had altered days. I said, well I have to check, I think you are trying to not have those days count as part of 10 days of suspension. I was totally honest. I told her I had to check with my advocate.

    So, when I was there, teh teacher and the behavior teacher came to me to say they felt that they had upset me and hadn't meant to. I said they hadn't really upset me but the psychologist and the administration did. I said, I have honestly lost trust in them and I am going to have an advocate. they said, that was great and can PACER come on Monday to an IEP meeting??? well I then told them it was the MN disability law center becasue pacer told me they can't come until there is a violation of the IEP. they said ok. (dont think they realize) The teacher gave me a hug and said she is just worried about him. I know but...... they want to re-write the bip on Monday and add a crisis plan. that is fine UNLESS the administration wants to add that he is suspended for things etc. That is why I want the advocate there. She has told me to call every time they communicate with me. SO I have. She is really angry with this district so hope she does not put all of them off, but I have no doubt that we will get some of the things we want. Our psychologist also agreed to come on MON. so he will be most important.

    I reminded them of the medication error and that is why they saw such a huge difference in his behavior. They know, but want to add a crisis plan anyway. I said, I didn't think we should change the bip until we did the independednt fba on the behaviors of concern. the sp. ed . coordinator will have to be there for that decision.

    I asked if they are willing to do the light sound auditory entrainment, they are so we will discuss that.
    I asked about the FM system, called the audiologist and the behavior team person said they had it in their full schools in texas and she thinks it is a great idea. the sp ed teacher was truly excited when I told her about the research I had and the results. she wants six of them. they think we should ask the audiologist to come soon. They MUST consider assistive technology so.....

    I am hoping it goes smoothly but my dad always says I am way too trusting.

    I feel like I can't really compose things well in my brain.

    here is my schedule this week now...

    Q goes to school at 9:30 to 11:30 tomorrow. I pick up and bring to doctor at 12 then I am not going back to school...too hard on him. I got his Integrated Listening Systems (ILS) worker to come for a make up day and he is coming at 2 so Q will love that. I will have him meet me in a northern suburb to meet TeDo because they are coming to the area for an appointment. YIPEE!!! I think timer lady is coming too! anyone who wants to come is welcome...just pm us.... I think we are eating at Old country Buffet, smile.

    Then Wed, he gets to go at 11 and will be there all day. (yeah, we will see)

    thurs and friday, thanksgiving, please let it go better than at my dad's

    friday Integrated Listening Systems (ILS) worker takes him so I get a break. I will write his new waiver plan during that time.

    Meet the phn on monday to write the new plan.

    Have to finish intake for Occupational Therapist (OT) and Speech Language Pathologist (SLP) (Occupational Therapist (OT) sent adolescent/adult forms, lol, me: Quin, do you prefer to add spice to your food? Q: shut up mom, I dont like those questions... ME: dialing the phone.... um miss therapist, can we please get the child version for me to fill out??? It is what was done exactly at teh hospital just a few weeks ago, can just give them the results.

    Has Speech Language Pathologist (SLP) evaluation on the 29th and psychiatrist appointment that day too. he will nto be happy. last time had to get a psychiatric tech to watch him to keep him from hitting me during the appointment . He was so stressed about the appointment then after, perfectly fine. He has such a low boiling point.



    Poor kid, thanks for letting me ramble...
     
  2. AnnieO

    AnnieO Shooting from the Hip

    :hugs:

    I know the frazzled feeling. Ramble away!

    I don't have any answers, but I did want to let you know I'm here.
     
  3. klmno

    klmno Active Member

    It sounds like you have been living in survival/crisis mode for a while and it's all overwhelming. As you know, this happens with difficult children and the school district always seems to make things harder instead of just doing what they should. I'm glad you'll have an advocate on board and since I know you are staying on top of medications and everything else, remind yourself that this is all that can be done, pat yourself on the back for being a wonderful warrior mom, hug your son or send him to bed- depending on how things are going- and then sit down and TRY to relax and have some 'me' time. ((HUGS))
     
  4. Steely

    Steely Active Member

    Wow wow wow ------------ too much.

    It sounds like he is still having seizures? Have they decided to switch his seizure medications?

    <<HUGS>>
     
  5. buddy

    buddy New Member

    we see the neuro tomorrow, I wonder if it is that, seems like it is the same pattern but he does just get tired too so is it the new medications along with increase in seizure medications and add to that the medication error so huge decrease in the BiPolar (BP) medication and huge increase over just a few days.


    oh gosh Integrated Listening Systems (ILS) worker called. she said she is outside of her car... Q is spitting on her and she said I have to come and get him....he said he woudl stop and she agreed to bring him home...she hasTONS of patience and forgives everything.... I dont get it, not her kid but she does.


    ok gotta go get prepared for him to come home, sigh
     
  6. Hound dog

    Hound dog Nana's are Beautiful

    She forgives everything because she probably knows a lot of it is very hard for him to control at this point, and some of it he may not be able to control at all at this point in time.

    I'm so glad you're getting an advocate. Our school district was one long battle until the day Travis graduated. And the boy wasn't even disruptive. (he saved it all for me and fell apart when he got home)

    Hopefully you get a little down time to destress soon.

    ((hugs))
     
  7. HaoZi

    HaoZi Guest

  8. buddy

    buddy New Member

    Well, that wasn't fun. They got home and he refused to come in...remember the locks???? and she said is it ok if on Wed they just do walking things for an hour because he was very unsafe in the car on the way home. I said absolutely! Totally a logical consequence very connected to the behavior. Poor thing had a hood and glasses to keep spit out of her face....yuck. It is my biggest pet peeve.

    Finally got him in. He fussed about my putting the lock on and every time I went to do it he grabbed me and cried. I finally had to threaten to call for help. HE bawled. He said fine put the lock on. He sat in my room for like 25 minutes bawling... the only way to stop all of this is to die. I asked how he was going to do that? He said I will get a knife, I know you have some somewhere.... (yeah, all locked up) I said, well nana wants help peeling potatoes on wed, OH mom, can Robin bring me to do that with you??? UMMMMMMMMMMMM what just happened? OK, Q. Sure.
     
  9. TerryJ2

    TerryJ2 Well-Known Member

    Whew! Oh my gosh.
    Does he remember doing the swearing echolalia stuff?
    Best of luck with-the appointment tomorrow.
    Sooooo sorry about the psychiatric at school. Glad the teacher was supportive. You get it coming and going. I can see why you weren't sure where to begin writing your note here!
     
  10. buddy

    buddy New Member

    Just re-read everyone's posts...this really sunk in...actually helped clear up my worry I was losing it.... I think that exactly says it all. I am used to being really on top of things, it just seems like right now it is one thing after another...NO down time. I did force myself to go to sleep earlier last night. STill woke early but I did it.

    Q is downstairs laughing his head off. Very odd... going to have to check. Hope it is just a funny show. sigh.
     
  11. klmno

    klmno Active Member

    Buddy, are you a single mom with no family help, trying to deal with all this on your own?
     
  12. buddy

    buddy New Member

    I am single, yup. I do have 3 sisters and my mom and my dad and his wife. We have family gatherings every couple of months but usually I have to leave with Q. when the kids all stay over at eachothers houses, Q always asks if he can too. They say, yeah, we will find a time....

    He finally said last year to one of my sisters I know that means no.

    If there is an emergency once in a while he can be with them. I can't even think of the last time. Years ago.

    They come to anything we ask, birthdays sporting events (adaptive) . He is not invited to the boys birthdays. I'm ok with that but he feels badly.

    I have Integrated Listening Systems (ILS) workers 12 hours a week. They take a lot of days off, tee hee. wonder why.
     
  13. klmno

    klmno Active Member

    OK- I understand. I was a single working mom with no support from anyone and it's very hard, as you know. It;'s not the same as someone who has a spouse in the home or family members who are helping. I would urge you to try to find friends or a group or something in your own area. Not that this board isn't great- it's been a life saver for me- but people tried to tell me that I needed a real-life support system ITRW when my son was about 12-13yo and I blew it off because I figured if I could handle working and raising an infant and preschooler on my own, I could certainly handle this. Boy was I wrong. on the other hand, who on earth do you make friends with in a situation like this? Married couples don't want to hang with single moms, normally. Single women can't relate, typically. So it's hard, if not impossible. I get that, too, and understand if you can't make it happen. But if you can seek it and have a chance, try. ((HUGS))
     
  14. buddy

    buddy New Member

    I have worked really hard to reconnect with some friends. Every time I make plans, something happens. I finally wrote to a college friend and high school friend both of whom I have been trying to see (have to see them in teh Integrated Listening Systems (ILS) hours of course) and said, next month...I just can't do it now. I am going to see a work friend (teacher I worked with who has two Autism Spectrum Disorders (ASD) kiddos). I miss them. but even 2 hours with a friend is something. I have been talking to them. I go volunteer at Q's school so they can get me if I'm needed but until recently, I usually just go do my thing and leave. It feels good to talk to adults and do something productive.

    It is nice you understand. I know there are a few of us on this board for sure. I do think sometimes when I hear of the couple struggles I dont really long for it, tee hee.
     
  15. klmno

    klmno Active Member

    I know- I don't grieve over not having a spouse either. LOL! BUT the help in the house if there is a crisis is certainly different than not having anyone at all to jump in and help.
     
  16. buddy

    buddy New Member

    I used to think about it more when he learned cool things. Like when we worked so hard to learn to pedal a little kid trike.... he finally got it and I was there alone cheering him on. I wanted someone to enjoy it with. Now I do think about having someone here during a crisis.... that would be helpful. But I know some people have their spouses escalate things. That would be awful for us.

    I guess it is a moot point. I chose to be a single mom and I really do love it. Just a little stressful at the time being. I feel sort of scared for him.
     
  17. rejectedmom

    rejectedmom New Member

    Buddy, no advice, just ((((HUGS))))).
     
  18. klmno

    klmno Active Member

    I loved being a single mom, too. I know my son has paid a price but that's another story. My suggestion was just that if it's feasible, try to find some friendly support. But that's also with understanding that it really isn't that easy.
     
  19. exhausted

    exhausted Active Member

    Buddy,
    I think you are amazing. I hope all that you have to do this week goes well. Hugs!
     
  20. DDD

    DDD Well-Known Member

    So glad that you are getting a social break. The pace you maintain is amazing and your son is a very lucky little boy having such a devoted Mom. Hugs. DDD
     
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