Day from HELL

Discussion in 'General Parenting' started by nandz, Jun 18, 2010.

  1. nandz

    nandz Guest

    Ok, I just posted this and it erased it so now I had to totally had to retype this..just add to my **** day, please..

    difficult child has been doing really well lately, or so I thought. He has been having stellar reports from daycare and has been really good at home. This week has been off. He's been more emotional lately. He has also developed a tic from his stims or the risperdal. We are not sure from which one it is. His pysch said it was from the stimulant. GREAT. I don't know what to do. He needs the medications to function at a better level, but I don't want him to have tics that kids will make fun of him. They are not noticeable because only I have seen them, but it is there. He had vacation bible school (VBS) this week. He went Monday and he was OK. He did just fine when I left and enjoyed it. Tuesday, he had a melt down when I left, but he was ok after I left for a bit. husband took him on Thursday and he said he did just fine. He did great when husband left and didn't have any problems at all. He had his VBS program tonight for parents to come and watch so I went. He was ok until it all started. They started the songs and he started doing the motions, but I started taping him and he melted down. He started crying and screaming. So, I took him outside to settle down. I sat him in the grass and told him if he wanted to have a fit he could sit there until he was done and we were not going inside until he calmed down. We sat out there for 1 1/2 hrs until he calmed down. He didn't scream the whole time, but he sat there pouting and angry so I told him that we still were not going inside. He finally said he was ok and we went inside. He melted again once we got hin there and I had to take him to the bathroom until he calmed down again. He finally went to play with his group and he only got to play for 5 minutes before it was over. We missed the whole thing because of his attitude and moods. I was sorely disappointed. I just wish one time I could go and he could do things like the other kids so I could enjoy watching him instead of being the one who is always getting stared at because her kid is having a melt down. He came home and went right to bed...

    Second part, I lost my job today. In 30 days, I will have no job and no income...what a great way to start the weekend.

    Third part, our basement flooded and ruined just about everything down there. I got home to a flooded basement.

    Thanks for letting me vent...I just don't know what to do anymore..uggh
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    My personal opinion is that mixing stims and Risperdal is not a good idea. One speeds you up, the other slows you down. Again JMO...I wouldn't do it.

    Risperdal was horrible for my son. If the Risperdal is causing the involuntary movement it could become permanent so be careful. It they get worse, he needs to have the psychiatrist take him off of it. Also, headaches, overly sleepy, flu symptoms and just plain sadness can happen on Risperdal and it did all that to my son. It was horrible for him and never got better. So please watch out. medications are hit and miss and are different for different kids. And some doctors are not as proficient in prescribing medications as others are. I am not convinced that your son had a willful tantrum. My son used to cry constantly on the Risperdal. It made him incredibly sad and he couldn't help it.

    A gentle reminder: Our kids are not our k ids to make us happy. These special children are not like other children are and won't give us the same perks and it's best to lower expectations as far as "typical" behaviors. Often they just can't do it. It makes us sad...we want our kids to do what other kids do, but, in our hearts, we know they are different. Take care of yourself, please.
  3. nandz

    nandz Guest

    See, that's the thing. The Risperdal is helping him at daycare SO much. The moods have been sporatic, but they have been there. I know it is hit and miss, but I know there are not perfect medications out there. There is always going to be something. I know I need to lower my expectations. I love my difficult child so very dearly, but it is so sad sometimes that I see other kids just being kids and he has to struggle so much and take these awful medications just to even come close to functioning with these kids. I am going to keep a close eye on the tics. I don't know if its the risperdal causing the tics or not. We wouldn't know unless we stopped it. I feel so torn with medications. I have considered taking him off of it, but then I wonder if I just need to give it more time. I hate all of this and sometimes I wonder if I am really doing the right thing for my precious difficult child. I know his tantrum wasn't willingly. He just melted down on me. The weird thing is that he didn't do this the rest of the week when I wasn't there. He is fine when I am not there, but if I am there, then the tantrums and melt downs start.
  4. Marguerite

    Marguerite Active Member

    The tic may not necessarily be from medications. Sometimes tics just happen. If the medications are helping him adapt to the world in some way, the amount of things he now is able to handle, is likely to be increasing his stress levels in other ways. Tics or stims (as in self-stimulatory behaviour) can be indistiguishable. Stimming behaviour can be a subconscious soothing strategy. Ironically, possibly an indicator that medications are helping him.

    medications aren't a cure. Not even a total fix. They just make things a bit easier sometimes.

    The problems you describe - the combination of the crowd, especially being watched (and by a video recorder too) may have just been too much for him. At least he was able to begin. It's more than difficult child 1 used to be able to do - he was a shocker when it came to people looking at him. Even in a happy way, it was too much for him. At school or at church when it was announced that it was difficult child 1's birthday, so let's all sing Happy Birthday to him - he would curl up in a ball and stay on the floor in a fetal position until everyone went away. As for standing out the front of the class, even with other kids, even to receive an a ward - forget it.

    In your son's case, I think you're right that your presence is a trigger. Your description of events shows that you seem to be very critical of his behaviour, but I do feel he wants to please you. However, he is scared he won't succeed, and this fear is making him so apprehensive that his fear becomes reality. Then your obvious disappointment in his behaviour reinforces this.

    You are only trying to handle this in the way you were raised, the methods that were used on you. After all, you turned out OK! But your son is not you, the times have changed plus you have a difficult child who isn't able to cope as well as you did. He needs your approval unconditionally, as well as your praise, even in tiy steps, when he can get it right.

    A different way you could have handled things today (try this next time) -

    1) get someone else to record for you. Don't tell difficult child that X is recording on your behalf. Just let him think you're just watching.

    2) Come to rehearsals. Walk out if you find yourself feeling or looking critical. Say nothing at all, let the people responsible handle absolutely everything.

    3) Only praise the good stuff, make that praise unconditional. Do this in all areas. Keep praise and criticism apart, try to avoid criticism for a while. "Catch him out" doing the right thing. For example, "Look at you! You're sitting so quietly watching TV, well done!"
    If (as some ratbag kids might do) he ten gets up and begins to misbehave, don't comment at all. DO NOT refer back and say, "What has happened? You were sitting so nicely!" Just ignore it. So you notice and praise the good behaviour, ignore the bad (when you can).

    With the raging and meltdown - you walk away as far as you can outside, go watch the action through a window. Don't you miss out on the rest of it. By leaving him without an obvious observer, he has a better chance of calming himself down. I can tell you from my own experience (because you haven't done anything here that I didn't do, over and over, with the same dud result) that standing over your kid saying, "Stop this RIGHT NOW!" just doesn't work. It only makes things a lot worse.

    If you feel the medications are helping him, leave him on them. Meanwhile keep a diary of changes you notice, of any problems. Describe the same way you did here. It is valuable observation, you wrote this well.

    Don't beat yourself up. But also, don't beta him up. He really wants to please you, but some environments and situations are just too much for him.

    If you can plan ahead with him and role-play how he could have handled his panic better, he might be better equipped next time.

    He did not melt down to stop you recording or to embarrass you or himself. He melted down because he was in panic mode; the situation had changed more than he could handle, and he had no other tools to help him cope.

    Crikey, he sounds spectrum-ish!

  5. susiestar

    susiestar Roll With It

    This is one of the major reasons to not start two medications at once. You just do not know which is causing the problem. Or to make two medication changes at once. Risperdal was awesome with a stimulant for my son. He stayed on concerta and risperdal for 4 years. IF your son has adhd the stimulant will NOT speed him up. It simply does NOT work like that in a person with ADHD. It allows them to slow down, exactly the OPPOSITE of what a stimulant does to someone without ADHD. It is one of the things that non-ADHD people have the hardest time understanding. It IS a paradoxical reaction to the stimulant, but it is all due to the differences in the way the brains and bodies of people with adhd and those without it work.

    It is likely that the stimulant is causing the tic. It would be my first guess. It is also the easiest to prove or disprove. Stims are fast in and fast out. They do not stay in the body for days at a time. In just a day or two your son would have the stimulant out of his system. If the tics are gone then they are problem due to the stimulant. If you add the stimulant back in and the tics start up again then you will know they are the cause. You may or may not have the same result from other stimulants so I would personally try another one or two until you see if one will help.

    The other medications for adhd are actually antidepressants like strattera. They are not very effective antidepressants for depression but somehow they help adhd. It can take up to six weeks at the target dose to know how well strattera will work. It would take a couple of weeks to know if strattera will have any effect at all. This is one reason most people try stimulants first. (Lots of people worry that putting a child with adhd on a stimulant will lead to drug abuse when they are older. Research shows the opposite is true. If they are effectively treated for their adhd they are far LESS likely to search out drugs to abuse because they have no need to self medicate. Of course this is dependent on the child/teen/adult truly having adhd.)

    Risperdal can be causing the tics also. Have you spoken to the psychiatrist about the tics? If the risperdal is causing the tics then he would likely need to try another antipsychotic. Any of them can have side effects, bad ones or mild ones. If it is helping enough to really change things then likely it would be worth it to at least try another one. It will take more than a day or two to taper him off of risperdal and to have the medication leave his system. That is why it is likely a faster road to the cause to remove the stimulant first and see if it helps. Usually a couple of days does not make enough of an impact on tardive dyskinesia as to make it permanent. At least that is what our psychiatrists always said.

    It really IS hard when our kids melt down when other kids are having a good time. We feel embarrassed that our kid is acting out, like we have done something wrong because our kid is not "behaving", sad because we are missing yet another possible good memory, and even sadder that our child has so many problems that they cannot even enjoy something simple like this.

    It sounds kind of like your son was just super overstimulated by the program, esp when it came time for him to have to perform. The most common fear is of standing up in front of people to speak or perform. It isn't just in adults. Some kids never are able to stand up and sing or whatever. While it is cute to watch when the kids are all up there, it can be truly terrifying to some children. It isn't uncommon even in kids who do not have other problems. Esp at your son's age. Your son may just not ever enjoy performing. At some point he might, but the more you push him to do it, and the more he sees that you are unhappy the worse the situation will get.

    Our library has an amazing summer program. Not only the reading program with prizes, but two different performances a week, 3 shows of each. the auditorium at the library has singers, poets, acting troupes, dogs that do tricks, storytellers, etc... for 9 weeks over the summer. The performers are all excellent. My older kids loved each and every show. They were happy to turn in their reading logs to get prizes.

    Then came thank you. thank you has sensory integration disorder. thank you cried and wailed through every performance. I had to find other parents for Jess to sit with because I HAD to be in the other rooms because he just could not cope. he melted down. He would escape and run like a madman through the room, even when every other kid was sittiing in rapt attention. For a while I worked on "teaching" him to "behave". After a week of that misery I realized he truly was unable to cope. So we listened through the closed doors. Or stayed in the main part of the library. Or read books in another meeting room that was empty. I even let him run up and down the hall as long as he didn't yell on some days. After a year or so of that he wanted to try the performances. We left before they were even half over that entire summer. The next year he sat through three of the shows. I was SO PROUD. He had to work to stay there, and it had to be something he really WANTED to see, but he did it.

    It seems to me that your little guy's meltdown wasn't about wanting to behave poorly or to upset you. He may not even know what it was that upset him so. If he knows, he may not have the ability to put it into words. Has he been evaluated for sensory issues by a private Occupational Therapist (OT)? I think it would help all of you learn how to help him through these things.

    In the meantime it is important to change the way you look at times like these. Rather than looking at it as difficult child choosing to melt down or behave badly, try to see it as difficult child being unable to handle the noise, the people, the singing, the movements, the people watching him, etc... after a week of working really HARD to adjust to something very new. VBS is very new to him, it is a short period of time (1 week) but is packed with unfamiliar things, transitions, parents not being there, expectations he likely doesn't fully understand, and then performing in front of a group with a group of kids, all at once (in his mind). By the end of the week he just had no more coping ability left. Then just as he finally got calm he had to go back in and it all hit him again, hence the second meltdown.

    It really is HARD to change how you look at his behavior from misbehaving on purpose to being unable to behave as expected. It is a giant shift in perception that takes the blame and much of the anger out. Of you can make the shift in perception you will then focus on helping him learn to be able to cope and to keeping expectations and the environment to ones he truly CAN handle. Once that is made and you understand what he can and cannot cope with, then you can start to help him learn to handle more intense stimuli and situation. I know it SOUNDS like you are "giving in" to his "bad behavior" (meaning the meltdowns). In reality you are teaching him how to learn to cope with more and more.

    It is a slow process. Lots of work. But so is almost every other aspect of parenting. Heck, even childbirth is no snap but we learned to muddle through, didn't we?

    There is a lot of grieving that we have to do when we truly realize the problems our kids have. When we truly see how these change the world for them it is super hard to accept as a parent. It is important that you allow yourself to grieve for the dreams you had for your child. What he would be like, how you would do this or that with him, what you would do as a family, the milestones he would reach and the memories you would make. No one asked for this, not the child or the parents.

    Our kids are on a path we never ever dreamed we would travel with them. It is full of so many good and not good and just plain awful things that we never dreamed would be part of OUR lives. We cannot accept the new path and embrace what we CAN have and enjoy with our kids unless and until we acknowledge that we are on this other path and that it won't be what we expected. Once we allow ourselves to grieve then we can accept where we are, who we are, who our kids are, and the journey we will travel together.

    While NONE of us would have chosen this path, once we are on it we learn it has incredibly rewards that we would have totally missed out on, that so many parents never get lucky enough to know.

    be gentle with yourself. Let yourself work through the anger and disappointment and grief. Remember that your son did not choose it either, but that he is willing to share it with you.

    I am so sorry about your job. It is a tough time to be out of work. I am disabled and fighting for disability and my husband has been out of work since August. File for unemployment as soon as you can. I would check it out online as soon as you can before you are laid off. Find out how much COBRA is for your insurance. There ARE federal grants to cover a big part of the cost of COBRA. File with social services for any aid you qualify for. Check into temporary agencies to see what opportunities are there. Some of the work might be working parking at football games, but it will help.

    This is going to be a really stressful time for the whole family. Don't forget that you can rant and vent here, as well as get ideas and hugs. If you cannot handle ideas it is okay to say so. Just tell us you need to vent, or rant, or whine or whatever, then let it out and ask for a hug. We won't mind. I promise.

  6. KTMom91

    KTMom91 Well-Known Member

    been there done got better as my daughter got older, but there were many performances I couldn't go to in the early years.

    I agree that starting/changing two (or more) medications at once is not a good idea. With Miss KT, though, the Adderall/Risperdal combo has been wonderful. She switched to Ritalin several months ago (much cheaper, since she goes off our insurance in August), and she's finally found the right dose.

    Sorry about the job Hubby was laid off in January, and COBRA, even with the federal subsidy, is more than our house payment. We don't know how long we'll be able to keep it going, since I don't work during the summer and am not eligible for unemployment. If your area has a Workforce Connection, or something similar, ask them about retraining for displaced workers. My Hubby was accepted into a 37 week Microsoft Network Training program on scholarship, and will continue to receive unemployment while he's in school. If you have specific questions, feel free to PM me.

    Many hugs.
  7. nandz

    nandz Guest

    Thank you for all your advice and support, ladies. I appreciate it. I am not taking him off the medications because the Risperdal and stimulant have helped him tremendously in many other ways. We just still have the melt downs and overstimulation at times. I am going to try not to be so critical. it is hard and I know its me coming to realize that I cannot change who he is and even though I love him with all of my heart, I cannot change who he is. It breaks my heart and I don't think I have grieved enough about it. I have to come to terms with it myself and it's been really difficult for me. You all keep telling me he is "spectrum" but not sure I am on board with that. I have talked to his psychiatrist about tics and he said the risperdal would help the tics and that the stimulant is probably causing the tic. He doesn't have any self stimming behaviors like arm flapping, rocking back and forth, noises, etc..but I know he does have sensory issues. No psychiatrist has to tell me that. I know that's what it is. It's just hard and I am just trying to raise him the best way I know how. I am trying not to be overly critical because I know he is doing the very best he can and he wants to please me. I love him and want him to be the best he can be and I just want to make sure I am a good mom. It's not easy parenting a special needs child. Thanks again, ladies.
  8. nandz

    nandz Guest

    I just had a talk with difficult child and I was crying. He said "Mommy, don't cry. It's not your fault. I was just too embarrassed to sing in front of everyone and I didn't like it..don't's not your fault" I feel like a bad mom. He was just too embarrassed and couldn't handle it...My precious son..he means the world to me.
  9. Farmwife

    Farmwife Member

    Oh my gosh, that is a baaaaad day. My heart goes out to you.

    I haven't had time to scan other posts so forgive me if I repeat anything. I wanted to type while your post was fresh in my mind.

    Summer transitions can be heck on a difficult child. My difficult child in particular falls apart when his routine changes. 90% of his off the wall behavior does not makes sense in these transitional phases so it's hard to say X behavior is because of X event. That makes it harder to understand even when I know it is coming after years of seeing it happen. Of course if their behavior were rational they wouldn't be difficult child's, right?

    As a parent the ticks would make me nervous too, I tend to panic with medical stuff. However I also have a difficult child who obsessively fidgets to the point that sometimes it seems tick-ish. At any rate regardless of why, my difficult child's behaviors and symptoms get worse in times of stress, namely transitions. If your difficult child is young you may still be on the path of his particular disorder developing, changing and growing as he ages more. We have to change medications with seasons and stress loads. there is no perfect combo in my difficult child's case. This may not be the case with all diagnosis though, in our case there is a path the disorder can take... Take thorough notes, be proactive with the psychiatrist and make sure they really take the time to listen to you and analyze your observations. You may not be the licensed pro but you ARE an expert when it comes to knowing your child.

    The job thing bites big ones. I am so sorry. I know it is hard to try and find a bright side but it will leave you with some extra time with difficult child over the summer. Sometimes it's hard to enjoy them through their various needs and issues. You get a sliver of time to go to parks (free), play board games and just be a parent/ child pair. Maybe just maybe you are on the verge of some special times and memories. (in between the worries of employment of course) Do your best to manage your own stress because difficult child's pick up on it very well.

    Basement flooding...aarrrggghhhh! Again, silver lining in poopie brown least you guys are safe! My basement is home to a lot of stuff so a flood would be tragic. On the other hand, the people I love and the stuff I need is upstairs with me. The rest is stuff I see or think about maybe once a year...
  10. TerryJ2

    TerryJ2 Well-Known Member

    The problems you describe - the combination of the crowd, especially being watched (and by a video recorder too) may have just been too much for him.

    I agree. And as your son just told you ... it was too much. Bravo for him, to be able to verbalize it at that young age!!!!!

    I am so sorry you had such a crummy day.

    I hope that you have wet-vacc'd the basement by now, and have fans going. Was there a lot of rain?

    I am so sorry about your job. I hope at least that your supervisor was nice about it.
    Tomorrow is Sunday ... lots of classified ads in the paper. Or you can go to a headhunter.
    No time like the present.

    by the way, in regard to the note disappearing, I often save a post immediately, and then go back in and make changes, just in case. So it looks like I've edited 82 million times, but at least I know that the basic note is still there. You may want to try that. Or, you can write on Notepad or Word, cut and paste it in here.
  11. tictoc

    tictoc New Member

    My son has not been able to make it through a single school performance or assembly without a meltdown in his three years of preschool and two years of public school. And, I still find myself wishing that he could just be like all the other kids. His social skills teacher and I agreed during kindergarten that it wasn't worth the anxiety it caused in difficult child to have him keep trying to do these things, so we just stopped. Now, he goes to the sp ed room during performances and assemblies and draws or plays games with his aide. He is much happier and I am happier, too. This is one area in which he just cannot participate like other kids.

    I am so sorry about your job and the flooded basement. You have had an awful day. We are here for you.
  12. BeachPeace

    BeachPeace Guest

    Oh, I feel your mama pain...
    Risperdal was wonderful for Blue - it really helped to decrease his agitation. When the psychiatrist added Abilify - it was with the intention to stop the Risperdal.
    But Blue just could not handle stopping it. Whenever we have tried to decrease the dose or phase it out, he just paces the house like a caged tiger until he rages. So - we have continued the Risperdal at 6am and 1 pm every day.
    It is an older drug, but it can be very effective. One plus it that it is inexpensive.
    I am so sorry about your day.
  13. Marguerite

    Marguerite Active Member

    Good on him for being able to explain to you so well.

    Have heart - he is the child he has always been. What you grieve, is the child you thought you had but never did, really.

    You're probably feeling even more raw because of your lost job. Such a blow, and what bad timing for you! Mind you, there never really is a good time to lose a job.

    About self-stimulatory behaviour - it's not always obvious. difficult child 3 has never flapped his hands. True, he's made noises, but generally not obvious ones. Some past stims which looked like tics - he had a sort of nose wrinkle. His autistic friend use to pull his mouth down briefly. easy child 2/difficult child 2 would sniff loudly, especially when reading or doing schoolwork. I remember one of my sisters doing the same thing - we shared a room and it drove me mad! difficult child 1 would make a quiet noise in his throat, it began when he was actually trying to imitate the sound of a male emu. Then he fond he couldn't stop. difficult child 3 makes a quiet growl like throat clearing.

    As an infant, difficult child 3 would stare at the flicker of light through the trees. I realise now, he was stimming in the same way some kids flap hands. He never need to flap his hands because he had discovered other ways.

    Stimming soothes, it's a coping strategy. If you try to stop them stimming, another habit will break out and replace it. Often as they get older, they find more socially acceptable ways to stimulant. easy child 2/difficult child 2 was obsessed with furry textures, so she covered her school folder in cowprint fur fabric and carried it everywhere between classes, thus getting her 'fix' of furry feel. Then she discovered the joy of firm pressure so she bought some heavily boned but attractive corsets and wears them, tightly laced. It looks like a fashion item on her and most of the time under her clothes, nobody would notice.

  14. TerryJ2

    TerryJ2 Well-Known Member

    How's it going today?
  15. nandz

    nandz Guest

    Going very well, thanks! difficult child hasn't had an episode since Friday. I think it was all just too much for him to handle that day. Poor kiddo:( He's been good since then.
  16. TerryJ2

    TerryJ2 Well-Known Member

    Amen. :) What about the basement? Your job?
  17. nandz

    nandz Guest

    The basement is good now. We had it cleaned up and the insurance paid for damages. We lost our stuff down there, but that can be replaced. With all that is going on right now, I need to try to focus on the positive. I am still jobless, but am going to apply for unemployment this week and hoping to get that going soon. I am job hunting now. There are not enough good jobs out there right now!

    Thanks for asking. I appreciate your concern! :D
  18. TerryJ2

    TerryJ2 Well-Known Member

    I'm glad you're getting things taken care of. I know what a hassle it is, and how nice it is when things finally line up again.
    Best of luck with-the job hunting!