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View Full Version : How to deal with DS while waiting for a diagnosis



mikeys_mom
02-29-2012, 11:40 PM
DS is 7.5 and we are in the process of getting him various evalutions - psychoeducational, neurological, social, anxiety, etc... He's had a really rough time in school this year. The evaluations will take time, though. Somehow, miraculously the psycho-ed one through the school had no wait, so that will start this week but will still take about a month to complete. Appointment with psychiatrist is in June. Still waiting for neurologist appointment.

I've been in touch with his teachers and the principal who have all been super amazing, understanding and helpful and have been trying to help DS as much as possible while we try to figure out exactly what is going on. Basically, they are not giving him consequences for every poor behaviour or inattentiveness. They send home a note in his agenda just to let me know what's going on when he has a rough day.

On nights when he has trouble sitting down to do homework, I sometimes tell him he doesn't have to finish everything and just write a note to the teacher. They are ok with that.

My bigger issue is with his behaviour at home. It's really hard to distinguish between inappropriate behaviour that he should be able to control vs. something that he really is not doing on purpose. I don't want to come down hard on him for things that are part of whatever issue(s) he is dealing with because I'm probably handling it all wrong right now. Not knowing what the actual issues are, I don't even know what techniques to attempt. However, I don't want to give him a free pass to misbehave for the next few months.

As an example - Tonight I told him to go take a shower. He recently claims to have developed a fear of being alone upstairs and didn't want to shower if nobody else was upstairs. Fine, told him he could wait until I took DD1 upstairs to get changed. All was fine, he walked into the shower in my bedroom and confirmed with me that I would stay upstairs in DD1's room until he was done and that I would come back when I hear him turn off the shower. Two seconds later, he came out of the shower and went to sit on the landing at the top of the stairs so he could see what the twins were watching on TV. I saw all this and warned him numerous times that when I was done with DD1, I was going downstairs and not coming back up so he should get in the shower if he didn't want to be upstairs alone. He never got back in the shower and threw an absolute fit when I went downstairs, begging me to come back up with him. Warned him there would be consequences. He ended up in full tantrum mode. I came very close to losing it with him and had to give myself a time-out in the kitchen to keep my cool. When all was said and done, he lost all screen time for 1 week plus his allowance. He never ended up showering. He was very apologetic at bedtime and promised to never do this again. Now here's the thing - we have had this exact same scenario happen 2 other times in the past 1.5 weeks. The other two times the consequences weren't as severe but now that he has done it 3 times I have had enough.

I dunno. I'm still wondering if I did the right thing or if I came down too hard on him. To me it seems like he needs to be able to follow his simple evening routine and if he doesn't, there will be consequences. But on the other hand, his extreme reaction gives me pause to think that maybe this is because of some issue that he has and I need to go easy I him.

Sorry, this got a bit long. Thanks for reading this far. I'm really just at a loss as to how to proceed to parent DS while we wait for answers. I'd appreciate any words of wisdom from those that have BTDT. Thanks.

karstmama
03-01-2012, 09:08 AM
i don't have any btdt, but positive thoughts going up as you all work to figure this out...

JTsMom
03-01-2012, 10:42 AM
First, let me just send a :hug: because I know how frustrating it all gets. It sounds like you are trying really hard to do the very best that you can, and I'm sure that is coming through. None of us have all the answers, even once the diagnoses start coming in, so try not to be too hard on yourself.

Behavior is our biggest challenge here too, and we're dealing with some combo of anxiety and OCD, coupled with off the charts ADHD, among other things. The scenario you described sounds a lot like life here most of the time.

I have a few tricks that help most of the time, with some things, but nothing that fixes it all. Some days are just bad days, and nothing I do seems to help. I'm going to throw out a few things, but I can't say if any of it will work for you or not, so try the things that sound like they could, and ignore the rest.

-Schedules and predictability. The more we stick with a (flexible) routine, the better things go, in general. Something like a written schedule might help with evenings. You can also use pictures if that would help.

-Timers are like magic here. I have a visible one, cheapy digital ones, and regular kitchen timers stashed throughout my house. I don't need to use any type of reward or consequence- I just say something like, "We have 15 mins to work on getting dressed, then we have to do X", or "Lets clean up for 10 minutes".

-I have to do a lot more "coaching" than a parent typically would for the same age kid. With your shower scenario, for example, I would have walked him back to the shower. Just guessing- could it have been that he wasn't comfortable in the bathroom alone, but didn't know how to tell you that? Anxiety is so tricky. I don't know a lot about it yet, but I do know it seems irrational if you're not the one feeling it, and that makes it hard for me to understand and sympathize with at times. Here, when we hit tantrum mode, it's done. There is no helping it, just surviving it. I know if it's gotten to that point, I've lost the battle, so I try to avoid that at all costs.

-A lot of times, typical parenting techniques don't work on not-so-typical kids. It's hard to have to shift your mindset, and ignore the barrage of advice you get from people who try to "help". One thing I know for us is that punishment usually makes things much, much worse. I try to stick with positive reinforcement, or nothing, as much as possible. Instead of taking a behavior management approach, I try to just steer the out of control car back onto the road, if that makes any sense.

-Non-traditional time out helps sometimes. I'll tell J to go to his room and calm down, but not put a time limit on it. He often comes back in one minute, and is fine. He just needs to remove himself from the situation and get a change of scenery, and it re-sets him or something.

- We're using a reward system right now, and for now, it's working pretty well. I buy these little ticket things at the dollar store, and give him a sticker for completing certain tasks, typically with a reasonably good attitude. I'll give him a few warnings that before he loses his chance at earning one, but I have to be careful not to phrase it as "losing" a sticker, b/c then it's more like a punishment. He can trade the stickers for screen time, money or prizes.

-Feingold diet

-When a meltdown does happen, I try to sit nearby, but not talk. Eventually, he usually wants a hug. I save any teaching until it's completely over- sometimes until much later in the day. I can't speak for every kid, but for mine, the meltdowns are much like toddler ones. He can't control them, and he hates them as much as I do. They can make me crazy, but I'm sure it's worse for him, so I try to keep telling myself that it's about him, not me. It's easier said than done though, and I only succeed with keeping my cool some of the time.

If you want to outline some more of the details about what you're seeing, maybe some of us could give some more targeted suggestions.

pastrygirl
03-01-2012, 10:46 AM
I don't have any advice, but wanted to say that I'm finding myself in a similar boat. I'm not sure what I can/should "discipline" for anymore, you know? The whole evaluation process is taking SO LONG.

o_mom
03-01-2012, 11:19 AM
If I were just to read the example you gave, not knowing that he was being evaluated otherwise, I would probably say that he is at a point where he is working through being the oldest and growing up. It sounds like he may want more time with you, but doesn't know how to ask. He knows that he 'should be' old enough to shower upstairs alone, but he probably sees the twins get a fun bath time with mom. They also get to watch TV and DD gets your attention while he is sent off to take care of himself. I'm not saying that you are mean for doing it this way, but taken from his perspective, it could be he is just jealous or needs his 'cup filled up'.

It may not be as calculated as this in his mind, but I know that at this age my DS did similar things. There were things that I would get upset over because he "is old enough" to do them alone or without me standing there. Bedtime, especially, when they are tired and have used up all their emotional energy can be hard. We went through stages where I had to sit in DS1's room while he got ready for bed or he would stall, wander around, cry about it, etc. I did find, though, that he would many times start talking to me when I was in there and I think he really just liked the company and my time, but didn't know how to explicitly ask for that. After a while, I found he was OK with getting ready on his own, but he really, really likes it when I come sit in his room with him after he is in bed and talk for a few minutes.

egoldber
03-01-2012, 12:08 PM
:yeahthat:

I know at that age with older DD, while she could shower on her own, in reality I often needed to walk upstairs with her and prompt her to get started. And on nights when she was very tired or emotional, it was often skipped because sometimes neither she nor I was able to deal with it.

missym
03-01-2012, 12:27 PM
Not sure if this is what was going on with your DS, but with older DD, who is ADHD with a bit of ODD thrown in, sometimes she's looking for an excuse to have a big tantrum. It's like she's got all this pent up energy (? or something, not sure that's not exactly right because it will happen more often when she's tired/hungry) and she's just trolling for a reason to throw down. Once she finds it, ka-boom! She will create a situation sometimes by refusing to comply with simple requests, picking a fight with her sister or one of us, etc.

The only thing we can really do when she's in a mood is try to recognize the signs and avoid the situation, or ride it out once the tantrum starts. This means as little interaction as possible until she calms down, in our case. Thankfully, these blowups have gotten less frequent as she's gotten older.

mikeys_mom
03-01-2012, 08:18 PM
Thank you all so much for your advice and support. It's helpful to hear different experiences and points of view.


I have to do a lot more "coaching" than a parent typically would for the same age kid. With your shower scenario, for example, I would have walked him back to the shower. Just guessing- could it have been that he wasn't comfortable in the bathroom alone, but didn't know how to tell you that? Anxiety is so tricky. I don't know a lot about it yet, but I do know it seems irrational if you're not the one feeling it, and that makes it hard for me to understand and sympathize with at times. Here, when we hit tantrum mode, it's done. There is no helping it, just surviving it. I know if it's gotten to that point, I've lost the battle, so I try to avoid that at all costs.

-A lot of times, typical parenting techniques don't work on not-so-typical kids. It's hard to have to shift your mindset, and ignore the barrage of advice you get from people who try to "help". One thing I know for us is that punishment usually makes things much, much worse. I try to stick with positive reinforcement, or nothing, as much as possible. Instead of taking a behavior management approach, I try to just steer the out of control car back onto the road, if that makes any sense.

JTsMom, this in particular really hit home for me. I feel like I am constantly coaching him through everything. In talking to the parents of some of his friends, I know that this is not typical for most kids. Regardless of what diagnosis we end up with, my gut tells me that DS is not a typical kid and I need to take that into consideration and steer away from behaviour modification. It is just really difficult to shift my mindset especially when I have 3 other kids who at the moment seem to be very typical and respond well to behaviour modification.

Timers worked really well for him last year in grade 1. This year, timers and setting time limits just increase his anxiety. He will sit around just watching the time tick down and get anxious about it so we stopped using them. Rewards also worked well until a few months ago when his symptoms really intensified. We could tell that he really wants the reward but he just can't seem to get it together to do what he is supposed to do or behave appropriately. The whole thing was backfiring because he would then get anxious about not getting the reward. My gut tells me that he really just can't control himself even though he wants to and this frustrates him. His principal seems to agree with this as well based on her observations and discussions with his teachers.


If I were just to read the example you gave, not knowing that he was being evaluated otherwise, I would probably say that he is at a point where he is working through being the oldest and growing up. It sounds like he may want more time with you, but doesn't know how to ask. He knows that he 'should be' old enough to shower upstairs alone, but he probably sees the twins get a fun bath time with mom. They also get to watch TV and DD gets your attention while he is sent off to take care of himself. I'm not saying that you are mean for doing it this way, but taken from his perspective, it could be he is just jealous or needs his 'cup filled up'.

This is such an interesting perspective that I never considered. I actually always thought the opposite. I have my nanny bathe the twins and I give DD1 a workbook to keep her busy. During that time I give DS my undivided attention to help with his homework in a quiet room, away from the chaos of the household. I always feel bad that I am spending so much time and energy with him and leaving the girls on their own in front of the TV. Once homework is done I try to spend time with the girls. However you are probably right that DS doesn't see me helping with homework as quality time with him. DH usually spends time talking with him before bed but I know he always tries to talk more given the chance. Certainly it's something we can work on.


Not sure if this is what was going on with your DS, but with older DD, who is ADHD with a bit of ODD thrown in, sometimes she's looking for an excuse to have a big tantrum. It's like she's got all this pent up energy (? or something, not sure that's not exactly right because it will happen more often when she's tired/hungry) and she's just trolling for a reason to throw down. Once she finds it, ka-boom! She will create a situation sometimes by refusing to comply with simple requests, picking a fight with her sister or one of us, etc.

This is exactly how I feel about DS sometimes. When he has a rough day at school he antagonizes his sister the entire walk home. Same thing when he gets in the house, he's just mean to her. Once he has had time to unwind and eat dinner the two of them play together like best friends.

Thank you all again. Reading everyone's experiences is so helpful. The past few months have been very challenging.

JTsMom
03-02-2012, 01:24 PM
It is hard! The thing that has helped shift my general mindset was seeing time and time again how my attempts to "crack down" always made life so much worse for everyone involved. Then, when I'd eventually throw my hands up, things would get better again. I still use some behavior modification type stuff, but that mindset shift was key for me.

A couple of books that were helpful were The Explosive Child, Raising Your Spirted Child, and Playful Parenting. I still struggle, and imagine I always will, but I try to savor the little victories. :)

I can only imagine how having an easier time with your other three comes into play. My second is still so young, so I'm only starting to see the differences, but when I ask him to do something and he does it the first time, or when he's disappointed over something, has a mini-tantrum for 2 mins, then gets over it, my jaw hits the floor. I think, "Wow! This is what it's like for everyone else?!?" lol

o_mom
03-02-2012, 02:52 PM
This is such an interesting perspective that I never considered. I actually always thought the opposite. I have my nanny bathe the twins and I give DD1 a workbook to keep her busy. During that time I give DS my undivided attention to help with his homework in a quiet room, away from the chaos of the household. I always feel bad that I am spending so much time and energy with him and leaving the girls on their own in front of the TV. Once homework is done I try to spend time with the girls. However you are probably right that DS doesn't see me helping with homework as quality time with him. DH usually spends time talking with him before bed but I know he always tries to talk more given the chance. Certainly it's something we can work on.



On this same note, I know that for my kids the mantra of "connection before correction" is usually true on some level. They are not receptive to learning anything from me if we are at odds. They need to have that secure connection before we can work on other stuff. Spending that time 1:1 is one way to build it up and get our relationship back on track. It is really hard when they have been acting up and you feel like the last thing you want is to spend more time with them, but I have found that it really helps and I know it has been discussed here before.

JTsMom
03-02-2012, 03:03 PM
It is really hard when they have been acting up and you feel like the last thing you want is to spend more time with them, but I have found that it really helps and I know it has been discussed here before.

ITA with this. Sometimes we'll get stuck in a cycle where the behavior continues to get worse, and therefore, we tend to want to "escape" from it, and things just keep going downhill. If we can break that cycle, and connect, things often turn right around. Hugs tend to work so much better than punishment. It's hard not to think that's rewarding bad behavior, but I once read that if your friend was acting the same way, you'd be much more understanding with them than you are your child. Why is it so easy to understand that now, but so hard to remember in the moment?

This might sound nutty, but typing that out, this popped into my head. Every once in a while, we'll do a role-reversal type thing when things go wrong. Usually, everyone ends up laughing, or understanding each others' position a little better (or both), but every once in a while, I really gain significant insight from it. Some times, Jason, playing the parent, is so unbelievably sweet to the tantruming kid (me), that it breaks my heart. I think he knows that's what I should do all the time, but he's a lot better at it than I am, I'm afraid. It's so easy to think they are trying to drive us batty, or gain something, but it's probably mostly about just not being able to cope.

mikeys_mom
03-05-2012, 03:44 PM
Thank you all so much!!! DH and I sat down and discussed how to move forward with DS based on the feedback from here. This weekend was so much better! Of course weekends are generally easier than school night but it was still better than it has been.

No major earth-shattering changes just some subtle things have made such a difference;

- Rather than trying to tell DS there is no need to be anxious, we have accepted that he has anxiety right now and are just trying to support him. DH sat in our bedroom while he showered one night and another night we just let him shower later because neither of us could sit upstairs with him at that time. Another issue we were having was him waking up during the night and coming into our bed because he didn't want to be alone. Problem is, he moves around and kicks us and nobody sleeps well. We discussed it with him and have setup certain parameters for when he can come in our room and that he can't thrash around if he wants to stay. So far so good.

- I have made an effort to give him extra snuggles throughout the day and before bed. DH usually handles bedtime with him but it seems as though he was missing time with me. Don't know how I couldn't figure that out on my own :bag. It just gets really busy here with all 4 kids demanding my attention.

- We have been trying to give him the sense of more control over things and making a big deal about it. He was complaining that he didn't want leftovers for dinner Sunday night, that he wanted to BBQ. Rather than starting an argument with him, DH and I looked at each other and thought - why not?!? So DH planned a BBQ with him, his sisters all thought it was great and thanked him for the idea. He was thrilled. Of course he's getting the leftovers tonight. Let's hope there's no meltdown...

I know that we still have a long road ahead of us in figuring out why he has been having so much trouble lately but at least in the short-term we seem to have found some things that are working.

I have requested those books that JTsMom suggested from the library. Hopefully they will help give us some more insights.

niccig
03-06-2012, 10:19 PM
Another issue we were having was him waking up during the night and coming into our bed because he didn't want to be alone. Problem is, he moves around and kicks us and nobody sleeps well. We discussed it with him and have setup certain parameters for when he can come in our room and that he can't thrash around if he wants to stay. So far so good.



I know some people have set up a camp bed - blow up mattress, blanket - in their room for the kids - just thought this might help if DS wakes you up.

MamaKath
03-07-2012, 01:07 AM
Hang in there! It sounds like you are on a great track. The 3 books mentioned were helpful along with Parenting your Sensory Sensitive Child (really helped more than some of the others).
-Shower- Will he bathe instead of shower? We found that during rough patches a bath with epsom salts helped on multiple fronts as the epsom salts seem to help us regulate his anxiety. Also I can go in and chat with him (we pull the shower curtain for privacy). When he was little he used to say "Come soak your feet" lol. It is a good time to talk and let him know he is listened too.
-Bed- Not sure what size bed you have. We have found that a pillow between him and one adult gives him a limit to space and there is way less kicking, moving, pushing that happens. If it gets to bad, I rouse him but don't wake him and walk him back to bed. It lessens as he gets older. At one point, he would ask to have his sibling sleep in the other bunk which actually kept him in his room.
- Tantrums- Some kids (and adults if we face reality) don't know how to switch gears. Sometimes changing the order of things can help you find something that is more successful (like bath then dinner then homework then bed instead of homework/dinner/bath/bed). Lots of kids with issues have sensory stuff going on (The Out-of-sync Child Has Fun has lots of activities to try for various sensory challenges) also can benefit from utilizing their senses in a different manor (helps explain why an early bath might be beneficial).

:hug:I am right there with you. It is scary sometimes to wonder if mine will pull it together by adulthood, yet I often forget that we both have a lot of learning to go until then.