ADHD/ODD/SPD? Something is going on ...help me not lose.my.mind while waiting on eval

[Gingerbread Mama]

I've posted before about DS8, asking if his behavior could be signs of ADHD. I was told that it sounded a bit like SPD...after reading up on SPD, it sounds VERY like DS. We are just now getting into the vision therapy thing, basically he is wearing special glasses and will go back in a couple of weeks to actually do the testing (couldn't the first time as his eyes were so bad they needed to adjust to glasses first.) I had kind of shelved looking for an OT until after we saw where we were heading with VT, I was afraid I would be trying to change too much, too fast if I started looking into OT at the same time.

 

Well, we have had a complete change of circumstances (in terms of his behavior.) Up to this point, it has always been worse at home. He's the kid that is a holy terror at home and an angel when he's at (previously) school or church. Not that he's not hyper, just that he tends to be more prone to at least ACT like he's listening to someone else...and it's not that I don't try to reign him in. I'm not one of those parents who throws up their hands and says, "Oh, my, he just won't listen." I have talked, disciplined, reasoned, etc.. until I am blue in the face. He was never "ugly" when I was correcting him, he just wasn't particularly remorseful and, even if he *did* behave well in the short term he always reverted to whatever had gotten him in trouble at some point. Most of the time, when I was giving him down the road about something he'd done, he'd have his eyes cast down and too the side with a smirk on his face and he would say things like "Ok, ok" and "I know!" in this sort of giggly voice. Basically, it was like "Aren't I cute? Aren't I funny?" and it drove me nuts. OTOH, he wasn't kicking or spitting at me like I've seen some out of control kids do to their parents and he never did that to anyone else. However, he has a very small part as an extra in a children's theater production. Up to this point, he has done REALLY well. We practiced multiple nights a week for the past few months and he has always behaved reasonably well and done what he is supposed to (a few glitches here and there, but usually I would remind him what was expected of him before the practice and he did well complying.) We had the first showing of it Thursday morning and all h@!! broke loose. It was like he was possessed. He ran in the hallway behind the stage, laughing at me as I tried to grab him and take him back to the room he was to wait in. He was literally dodging people while looking over his shoulder at me as he ran. Backstage he was climbing on props, talking loudly, and jumping around. Some of the older kids were trying to quietly reign him in (before I got over there) and he was laughing at them and saying "OK, ok, ok" really loudly or, at other times, backing away from them (and bumping into things) while shaking his head no and laughing. He even ran out onto the stage during a set change! He is only ever to go out onto the stage with the same group of people, he knew they weren't going out because they were trying to keep him backstage. If he'd looked panicked when he got out there, I would have said he was confused and hadn't meant to do it...instead he made a running circuit of the stage and then ran, beaming, backstage. When I grabbed him as he came in he was jerking away from me and trying to run past me. There are children younger than him in this play, none acted anything like this. I wanted to sink through the floor. After it was over, I brought him home and really chewed him about the behavior. I went over what he was SUPPOSED to do, I made him stay in time out for quite a while (less over the behavior at the play, more over the fact that he was still being defiant and had even slapped at me when I was trying to talk to him. I wanted him to calm down and act human before allowing him to come out of the room - that did happen, 4 hours later :glare:)

 

So, yesterday we had an evening performance. I thought that perhaps it was a combination of things that led to the atrocious things he did on Thursday. I reasoned that it had been an early morning showing (meaning he didn't get the usual long walk and skateboarding that we usually do to wear him down before lessons) so perhaps he had pent up energy, I told myself that he knew there would be kids from his old school there on a field trip (he was talking about them a lot - asking which classes would be there over and over), I even told myself that it was the first show and maybe he had jitters. The kids all played outside from 9:30 - 3:30 yesterday, they were grimey and calm when I brought them in to start cleaning up for the play. I made sure they ate good food regularly throughout the day so his blood sugar wouldn't be out of whack. I prayed that Thursday would prove to be a fluke. It didn't. He wasn't *quite* as bad last night, but he was still out of control. Still shouting back stage, got in trouble for climbing (actually hurling himself bodily) at props behind the stage, tried to go out onto the stage when he wasn't supposed to (thankfully, one of the teen girls was wise to this by that point and grabbed him before he could get out), was holding his arms up to the bigger kids and saying "Uppy, uppy" like a baby... The thing is, my mom went to see the play last night and she said he behaved perfectly on the stage. So it's like a switch - once he gets out there in his group, he straightens right up. The minute he comes back through the curtain he turns into a wild animal.

 

My husband has driven 9 hours to be here to see them in the play tonight. I know he will be angry (and accuse me of being a helicopter mom) if I don't sit in the audience with him. My problem is: How do I leave this kid backstage? How do I foist him off on other people with him acting so awful? That isn't fair to them. There were a few kids that would look visibly relieved when I would come to drag him off to a corner and keep him off them. I don't want my kid to be the one people are talking about later, saying "Oh, I hope he doesn't do this again. He's awful." He doesn't have to do children's theater, he DOES have to learn to be in social settings without turning into a one man circus act. I had thought about telling the director what was going on, she isn't backstage during the shows, and telling her that I'd just like to pull him out so I'm not in the way back there as his "handler" and so he won't continue to disrupt people. His part is so minor, I don't think it would be noticeable. I know DH would be mad. He would tell me I baby him, that if I disciplined him more/better he wouldn't be acting that way, that I need to *make* him do this and act right (how?!)

 

I'm going to hope against hope that, with me out of the equation, he won't feel as comfortable/protected and will be on better behavior. I think that has a snowball's chance of happening, though. I've also talked over with my mother the possibility of HER sitting back there. Not necessarily in the backstage area, but in a room off the hallway where she could hear him if he was being disruptive and could go get him and take him out. That doesn't help if he gets away from them and darts onto the stage again, though.

 

FWIW, after the Thursday debacle, I decided that there was NO way we could wait on finding out what is going on. If he is going to start acting this way outside the home, it is escalating. Also, we *had* been having mild success with him at home prior to this. Since Thursday, he is on full tilt at home. He has become defiant and ugly when I try to deal with him. Yesterday, he had been harrassing DD. I had pulled him to the side, and was trying to talk to him about how he needed to act. He was looking away from me and I put my hand under his chin to bring his face around. He slapped my hand away and looked at me with this utterly defiant look on his face. That has NEVER happened before. Up to now, it's just been like he thinks what he's doing is hilarious, now it's like he becomes angry and tries to provoke when I am correcting him.

 

I thought the play would be good for him, turns out it is going to kill me :tongue_smilie:I just don't understand how he made it throughs months of long rehersals so well, and has now wigged out completely. The only thing I can think of is that he is overwhelmed by the people in the crowd, the stage lights, the dark/quiet of backstage...still, this isn't a normal response to that. If he were crying and begging not to go I would say stagefright, this is the opposite, it's like he's thriving on keeping people on edge!

[onaclairadeluna]

:grouphug:

 

Oh dear. Hang in there. You are doing the right thing getting an evaluation.

[PeterPan]

I can't believe you're letting him go out again, not with what you described. He's sick and staying home, end of story. I would never put my kid in a position like that where s/he is likely to fail because she's not neurologically in a place to handle the demands. You don't have to know WHY. You just know he's not up to doing it, which means you pull the big card and stop it.

 

BTW, try chamomile. I use a tincture called Calm Child with my kid, or you can give him the tea. Chills 'em out. I'd give him that and some soothing sensory (backrubs, swinging, whatever) and put him to bed. Sounds like you and the father need time talking privately about some things more than you need to watch him in a play.

 

Blunt as ever. ;)

 

PS. If they don't have a back-up, pull him anyway.

[LittleIzumi]

I can't believe you're letting him go out again, not with what you described. He's sick and staying home, end of story. I would never put my kid in a position like that where s/he is likely to fail because she's not neurologically in a place to handle the demands. You don't have to know WHY. You just know he's not up to doing it, which means you pull the big card and stop it.

 

BTW, try chamomile. I use a tincture called Calm Child with my kid, or you can give him the tea. Chills 'em out. I'd give him that and some soothing sensory (backrubs, swinging, whatever) and put him to bed. Sounds like you and the father need time talking privately about some things more than you need to watch him in a play.

 

Blunt as ever. ;)

 

PS. If they don't have a back-up, pull him anyway.

 

We use something similar. Calms Forte 4 Kids.

[Tokyomarie]

Is this change just since he started to wear the new glasses? If so, what about having him not wear the glasses until after the performances are finished? Do you think that might make a difference?

 

I think your husband needs to recognize that something is up with the child's behavior and that necessitates a change in expectations for how you will be handling the child (ie staying backstage or whatever).

 

I think I disagree with Elizabeth on pulling him from the performance at this time- especially since your husband just drove 9 hours home to see him. If *you* pulled him from the performance and I was the husband, I WOULD be very angry about having an 18 hour round trip drive for *WHAT???*. Now, if the producer of the play pulled him for disruptive behavior, that would be different. How many performances are left for this play?

 

OTOH, with your husband home, this is a good time to have some private conversation about the bigger picture of what's going on with your son and the best plan for getting help. Maybe the VT isn't the best first place to start. Perhaps a developmental pediatrician or a neuropsych who can look at the bigger picture and help you sort out priorities for addressing the difficulties would be a better option.

 

Hoping you can make it through the weekend. It's hard to have a sudden change at such a critical time.

[MomatHWTK]

There is a HUGE difference between what we can see in hindsight, having dealt with SN issues for awhile, vs. being at the beginning of the journey. Day to day I struggle with what is "giving in to bad behavior" and what is accomodating my child's very real disabilities. Even with the monthly advice and encouragement of his therapist, I still struggle with where to draw the line. What is punishable behavior vs. what is something DS really can't control? So I think it would be too easy to put this in the "I would never" category.

 

You are in a tough place, no doubt. Odds are, your child is in a full melt-down mode and will stay that way. Miserable place to be as a parent. Outside pressure, a spouse whose not witnessed the whole event and thus doesn't understand completely, a child who won't understand what they perceive as being punished... No winning answer here.

 

Talk to DH, tell him you believe that DS really can't control himself and needs help. Start with that. Once you are both clear that this is something outside the child's full control, then brainstorm about how to handle it. If you decide to go through with the performance, brief your DH on how things may go backstage. Make sure he understands that something is very "not right" and it's not something to be punished but treated. :grouphug:

[akalori]

Yikes, sorry you are so overwhelmed. I've been there. Our son woke up one morning with full blown Tourette's Syndrome. At times it seemed that he had 100 tics per hour. It lasted for a few weeks then subsided dramatically. Now he rarely tics. Maybe there is some stress causing his problems. in our case, it was due to moving into a new home. Maybe the play is too stressful for him. Or as another poster suggested, it could be the glasses and vision therapy. I would try to elimate as much stress as possible. It can't be enjoyable for him to feel so out of control. Good Luck, Lori

[Gingerbread Mama]

Day to day I struggle with what is "giving in to bad behavior" and what is accomodating my child's very real disabilities. Even with the monthly advice and encouragement of his therapist, I still struggle with where to draw the line. What is punishable behavior vs. what is something DS really can't control?

 

 

Oh dear, so that doesn't really get much better? *sigh* That is a big issue for me, I was hoping there was some "magic" book or support group that would have a list (just kidding!):001_huh:

 

The thing is, my husband feels he has no say in how we handle the kids...aaaand, he's kind of right. For one thing, he isn't here very often and there are things I have to handle in the here and now. Also, he is the type to put things off or sweep them under the rug until it is a full blown disaster and that just isn't acceptable for me. When I see a problem, I want to start addressing it and clearing it up.

 

I hadn't thought about the new glasses causing a problem, but that does seem plausible. She told me it would take at least a month before his eyes were at a place that she could begin testing for things like tracking and convergence. We are on week 3, so perhaps he is experiencing some major changes that are manifesting in bad behavior.

 

I did sit down with DH and discuss DS. Of course, he is sure that I'm just not trying hard enough or am not being stern enough :glare: He thinks I wait for him to come in and make him be the heavy, honestly I feel like the Grinch all the time...I am ALWAYS correcting and disciplining. We did end up leaving him in the play - he basically walked across the stage a couple of times, so it isn't like he spent much time backstage. Because the issue started the minute he left the holding area and continued until he went on stage, we decided to work on limiting that time. Luckily, I had some friends who were working backstage and one of them is an assistant in SpEd in the school he used to attend. She knew him, through me, and has experience with special needs kids so I had a talk with her and she was really wonderful about not calling for him until he was needed and making sure he was sent directly back to the waiting area when he left the staqe. My older son was a stage hand and he said that it really cut back on the melt downs. He told me there was only twice that DS8 "came unglued" and he (the older son) was able to say "Hey, that needs to stop - go back to the waiting room and sit down" and DS listened. I think my NOT being back there may have helped. Not so much in that it curbed his behavior, but sometimes I wonder if I exacerbate it. I'm so on edge, just waiting for him to embarass me...I know that sometimes I have been so tightly wound waiting on the incident that I probably over react. It stinks being basically the only person taking care of him - it's a lot of pressure. I just wonder if other people, who didn't take his outbursts/behavior so personally, were better able to stay calm and handle things in a more detached manner.

 

It wasn't just that DH was driving in, although that factored in, but also that he would be there and ALL the kids were involved in the play. DD had a major part and I'm so tired of her and our older son being shortchanged because of issues with YDS. She worked really hard and she deserved one show with her whole family out front watching her. Also, in comparison to some things we have been hashing out regarding members of his family, this was a battle I was willing to concede. There are other hills I need to die on.

 

I still haven't heard back from our family dr about the OT. I did find a center for autism a couple of hours away and I had read somewhere that places like that sometimes have lists of providers and recommendations. I'm going to go there tomorrow (I'll be in the area anyway) and see what they can tell me about developmental peds in the area. We used someone years ago, but he was a bit of a flake and I felt like he brushed me off, I'd like to try someone new.

 

:grouphug:Thank you for the feedback, I was so stressed and exhausted this weekend (exactly the state of mind you want to be in when your child decides to come unhinged ;)) that I didn't even think to come back.

Edited April 16, 2012 by Gingerbread Mama

[Laurie4b]

Oh dear, so that doesn't really get much better? *sigh* That is a big issue for me, I was hoping there was some "magic" book or support group that would have a list (just kidding!):001_huh:

 

The thing is, my husband feels he has no say in how we handle the kids...aaaand, he's kind of right. For one thing, he isn't here very often and there are things I have to handle in the here and now. Also, he is the type to put things off or sweep them under the rug until it is a full blown disaster and that just isn't acceptable for me. When I see a problem, I want to start addressing it and clearing it up.

 

I hadn't thought about the new glasses causing a problem, but that does seem plausible. She told me it would take at least a month before his eyes were at a place that she could begin testing for things like tracking and convergence. We are on week 3, so perhaps he is experiencing some major changes that are manifesting in bad behavior.

 

I did sit down with DH and discuss DS. Of course, he is sure that I'm just not trying hard enough or am not being stern enough :glare: He thinks I wait for him to come in and make him be the heavy, honestly I feel like the Grinch all the time...I am ALWAYS correcting and disciplining. We did end up leaving him in the play - he basically walked across the stage a couple of times, so it isn't like he spent much time backstage. Because the issue started the minute he left the holding area and continued until he went on stage, we decided to work on limiting that time. Luckily, I had some friends who were working backstage and one of them is an assistant in SpEd in the school he used to attend. She knew him, through me, and has experience with special needs kids so I had a talk with her and she was really wonderful about not calling for him until he was needed and making sure he was sent directly back to the waiting area when he left the staqe. My older son was a stage hand and he said that it really cut back on the melt downs. He told me there was only twice that DS8 "came unglued" and he (the older son) was able to say "Hey, that needs to stop - go back to the waiting room and sit down" and DS listened. I think my NOT being back there may have helped. Not so much in that it curbed his behavior, but sometimes I wonder if I exacerbate it. I'm so on edge, just waiting for him to embarass me...I know that sometimes I have been so tightly wound waiting on the incident that I probably over react. It stinks being basically the only person taking care of him - it's a lot of pressure. I just wonder if other people, who didn't take his outbursts/behavior so personally, were better able to stay calm and handle things in a more detached manner.

 

It wasn't just that DH was driving in, although that factored in, but also that he would be there and ALL the kids were involved in the play. DD had a major part and I'm so tired of her and our older son being shortchanged because of issues with YDS. She worked really hard and she deserved one show with her whole family out front watching her. Also, in comparison to some things we have been hashing out regarding members of his family, this was a battle I was willing to concede. There are other hills I need to die on.

 

I still haven't heard back from our family dr about the OT. I did find a center for autism a couple of hours away and I had read somewhere that places like that sometimes have lists of providers and recommendations. I'm going to go there tomorrow (I'll be in the area anyway) and see what they can tell me about developmental peds in the area. We used someone years ago, but he was a bit of a flake and I felt like he brushed me off, I'd like to try someone new.

 

:grouphug:Thank you for the feedback, I was so stressed and exhausted this weekend (exactly the state of mind you want to be in when your child decides to come unhinged ;)) that I didn't even think to come back.

 

Glad it worked out well enough.

 

A couple things with OT would help.

1) they teach kids to evaluate how their "engine" is running: high, medium, or low and they teach them what to do to get it to medium. His engine was on "high." My ds was asked by an adult friend of family which he liked best: high, medium, or low. He said, "Medium." Friend then asked what it was like to be high, and ds responded, "I never know what I'm going to do next." Our ds used to laugh when he was like that,too, even if he was being disciplined.

2) Heavy proprioceptive input (muscle-joint input) is almost always one of the things that will help. Your ds slamming himself into the props was a form of getting proprioceptive input. Heavy proprioceptive activity in OT made an absolutely unbelievable difference in ds. He needed the level they could provide in OT and also their guidance; additionally, they taught him things he could do at home or when "high" to bring it back down to medium.

[MomatHWTK]

I have not take the time to read all this information, but it looks helpful:

http://www.udel.edu/cds/familyeducation/therapists-sessions.html

 

( I need to take the time, but you know how that goes.) :glare:

[Tokyomarie]

I'm glad you got through the rest of the play with a minimum of disruption. I totally understand the embarrassment of having kids act out in public. I wish I had been able to find the help I needed when my ds was young so I could learn how to mangage the way I responded to him and better understand what was behind his behaviors. Life could have gotten on an even keel so much sooner than it did.

 

It's really hard for dads-especially dads who are away a lot or work long hours- to come to a place of understanding their children's behaviors and how they compare against the typical for a given age. My dh was never interested in learning about normal child development so when I tried to help him understand behaviors and achievement that was significantly discrepant from the norm he just couldn't get it. He had not spent enough time around other people's children or enough time managing his own children's behaviors to understand what I was trying to tell him. Only within the last couple of years has he finally begun to understand- and our last child is nearly an adult. My ability to help my children would have been so much greater if I had been free to get the evaluations I wanted when they would have been most useful, but at this point it is no help to my mental health to dwell on what could have been. I can only go forward- and encourage other people to "go for it" when they get to the place where they know in their gut they need help.

[Barb_]

Basically, it was like "Aren't I cute? Aren't I funny?" and it drove me nuts.

 

The above jumped out at me. I have two children who do this. One is diagnosed mild Asperger's and the other has been diagnosed with moderate to severe ADHD. They both have little to no natural emotional control. I've worked extensively with them to get a handle on things, but when emotions are overwhelming and negative (fear, particularly), things can get scrambled in there. Even completely neurotypical people can have emotional reflexes at inappropriate times. Think about the phrase, "I laughed until I cried," or "tears of joy." How many people have you heard of who suddenly get giggling fits during solemn occasions, such as funerals. Or the cliched hysterical laughter when terrified?

 

A child can have a difficult time controlling the smiling reflex when he is in trouble because it pops out in times of fear or guilt, not because he thinks it's funny or he's being cute, particularly children who have neurological issues. Notice his words and his body language (Does he duck his head and avert his eyes?), not the emotional reflex he can't control.

[Barb_]

My husband has driven 9 hours to be here to see them in the play tonight. I know he will be angry (and accuse me of being a helicopter mom) if I don't sit in the audience with him.

 

I meant to respond to this point as well. Tell your husband that your son is a work in progress. Some kids find math difficult, others are challenged in reading or cannot sing and then there are those that are hopeless at sports. Your son is particularly challenged at self-control and is continually learning. Just as he couldn't learn long division in one sitting if he were mathematically challenged, he isn't going to be able to control himself amidst chaos simply because we will him to. It would be completely irresponsible to leave him to his own devices under the circumstances.

 

:grouphug: Because I know how hard this is. It has to be worse when your spouse seems to be blaming you for your child's issues.

[diaperjoys]

Glad it worked out well enough.

 

A couple things with OT would help.

1) they teach kids to evaluate how their "engine" is running: high, medium, or low and they teach them what to do to get it to medium. His engine was on "high." My ds was asked by an adult friend of family which he liked best: high, medium, or low. He said, "Medium." Friend then asked what it was like to be high, and ds responded, "I never know what I'm going to do next." Our ds used to laugh when he was like that,too, even if he was being disciplined.

2) Heavy proprioceptive input (muscle-joint input) is almost always one of the things that will help. Your ds slamming himself into the props was a form of getting proprioceptive input. Heavy proprioceptive activity in OT made an absolutely unbelievable difference in ds. He needed the level they could provide in OT and also their guidance; additionally, they taught him things he could do at home or when "high" to bring it back down to medium.

 

My son (SPD/ADHD) recently went through OT and learned the "how does your engine run" techniques. Very, very helpful. He now has many tools for recognizing if he is beginning to act hyper (engine too high), and knows how to settle himself (getting his engine just right). Just learning to recognize the 'engine states' went a very long way with him.

 

Additionally, for my son, it is a vestibular issue, and when the OT fills session with vestibular exercises, we then have a CALM child for the remainder of the day.

 

Highly recommendd!