Long-time lurker missing the SN board!

[lurkie22]

Hi everyone, long-time lurker jumping in here. I came over from the "other place" ages ago but never really posted here much. I posted on the SN boards a couple of times, but it got quiet and I deactivated. I hope it's okay that I'm posting here!

My DS (8) was diagnosed with ASD at age 5, and was also assessed as gifted at that time. At 6 he was also diagnosed with ADHD (inattentive). He has an aide at school, and we've done OT, Behaviour Intervention and counselling at various times. I don't know anyone else with SN kid(s) IRL, and with being in lockdown, I'm really missing services and counselling and people who "get it". So I hope families with kids with ASD and/or ADHD will jump in and share their experiences, too!

What I'm struggling with right now is feeling like I'm just shooting in the dark a lot of the time with how I deal with things, and I feel like nothing really works, which makes me feel hopeless.  Aside from the challenges of inattention, rigidity over routines and struggling with relating to peers or being able to do the typical "back and forth" needed to play or negotiate tricky situations, DS also seems to antagonize people a lot, especially if he's upset/uncomfortable about something. While I "get it" in theory, it also drives me absolutely crazy, and I feel like my family needs some serious help to deal with it so it doesn't become just a "normal" family dynamic, especially for DD, who is 6 and neurotypical as far as we can tell.

I'm getting long-winded, but here are some of the typical challenges. DS can't play with DD without completely directing her play, so they can generally play for 5 minutes before they're both frustrated and give up. If DS gets really frustrated, he'll escalate super quickly and start yelling, get really close to DD's face, and if I don't/can't step in right away, potentially hit her. So I stay close all the time, and intervene as calmly as possible, and remind DS that when he feels that upset, it's time to walk away. (Trying to be proactive, not just reactive and punitive.) If he does hit or push her, he gets a time out or loses screen time, but I feel like it really doesn't dissuade him at all. Often he's just mad that he got caught and holds a grudge against me for punishing him, lol. Most of the time I'm able to catch it in time, but it's exhausting and I'm always on edge. When they're calm, I talk a lot about empathy, taking care of each other, and reminding them that being brother and sister is important, and try to encourage warm, fuzzy feelings. I don't know what else I can do to stop him from reacting so fast and with so much anger/loss of control. He's very jealous of DD despite the fact that I spend tons of time with both of them.

The other challenge is that when he's bored/tired/grumpy/anxious, etc, he picks on DD. They'll be playing just fine, and then he does something he knows is annoying, to tease her. DD asks him to stop, so he does it more. He'll keep going until I intervene or she's screaming, or she loses it and hits him. (I try to jump in as soon as I hear her say "no" to tell him I heard her say no and he needs to back off.) Or if I ask him NOT to do something, he does it. If I ask him to stop doing something (like making an obnoxious noise that he clearly knows is annoying), he does it more. It's maddening!! I know that picking on people can be an ADHD trait - creating stimulation for a bored brain - but I'm starting to wonder if it might be ODD? Also, once he's succeeded in upsetting DD, if he manages to really tick her off and she cries, it's like a switch flips and then he gets super anxious and starts clowning around to get her to stop crying. (I think mainly because the sound annoys him, not out of genuine empathy.)

That was a long vent, but I'm just at the end of my rope so many days, and trying to do the right thing, but nothing seems to work. Any others whose kids show similar behaviours, and any luck with strategies you've tried?

If you read this whole thing - thank you!!! DS is also a super bright, funny, quirky kid - I'm just really struggling with the hair trigger temper and the teasing. DH also has ADHD and is honestly not capable of handling this stuff due to his own issues, so any routines/discipline/time management/conflict resolution duties fall very disproportionately on me. I'm also home with them 100% of the time now due to COVID, while DH is still working (in an empty office space that I very much envy sometimes!)

[nicanmatt]

I hear you. I don't have any advice, but I hear you.
My daughter has Down syndrome and getting her to transition from play time alllll the time to suddenly using that same snack space to sit and learn has been extremely difficult. And she loves to antagonize the baby. They can be two peas in a pod one second, and the next she is emptying all of his dresser drawers full of clothes onto him because it's fun! I'm also trying to work full time and her older brother ends up minding her far more of the day than he should. And then he gets upset because she does XYZ and doesn't get a full reprimand like he would have. I can't get her to go to, or stay, in the time out chair. I literally carried her, plank style, from his room to her Teams meeting with her Spec. Ed teacher yesterday because she refused to go sit in her chair. We are giving lots of reminders "Ms. Williams will be excited to see you in 30 minutes!! When the timer goes off, you can see your OT Teacher!!" and none of it matters.

Is your DS able to do FaceTime with any of his friends?? I think DD's speech would make it too difficult to meet with her friends over the phone, but I may need to try something. She doesn't understand why we can't go to a hotel or the toy store or the library, etc. etc. etc. And she's finding new ways to be destructively occupied around the house! But maybe the FaceTime interaction could help your son with the peer to peer back and forth, ask his teacher if there is a kid he does this with at school-they may already be used to the interaction and be able/willing to do it online?

I'm sorry have no more advice, but lots of commiseration. Sorry if I hijacked with my vent. I'm just SO OVER all of this. It's overwhelming and frustrating and I can't constantly be ON. Be kind to yourself, and extra kind to your daughter who is dealing with this as best as she can too. I'm definitely trying to give my oldest extra praise for his help, special Friday night movie night and I've bought him his favorite treats that I normally do not get regularly.

[rebneen]

I could've written your post, lurkie22. Mine are littler but same age gap/similar play style/EXACT SAME dynamic. I am not proud of how angry I keep getting at DS because he just cannot go more than 10 minutes without pushing, pinching, etc AS SOON AS I fucking look away. It's so frustrating.

I finally emailed his team and the SLP sent me a social story we'll read at bedtime. Idk if that's enough, though. It's so hard. DS still gets 30 minutes with each of his 3 specialists, but those are so erratic. One he needed 100% of my attention for facilitation (attending to task, following directions, compliance, etc). The other he did almost independently one week but then the next week he was frustrated his teacher couldn't hear him during their group discussion and so he just totally shut down.

He doesn't want to do any of the work and because his sister is 2.5 and a major handful, I can't make him, nor do I have time to find stuff he will do as a single mom.

Hugs everyone. This is so so hard on everyone. I worry about DD.

[wesleycrusher]

PDQ

I hear you. I don't have advice but you're not alone! My DS has adjustment d/o with disturbance of conduct and ADHD (impulsivity and hyperactivity). He's been in therapy but actually we just had an appt and will be starting medication and the doc did a really great job explaining how the meds will help. I'm actually thankful we're all home together so we can monitor closely. Not sure if your son is on meds, but we're hoping that will help with the impulsivity. We can talk til we're blue in the face even when he's calm but it doesn't help in the situation. My 2 kids are both 7 and are really close in age (through adoption), we see some of the same behaviors when they play together. We definitely have had more luck with his therapist talking to him than us doing it.

[lurkie22]

Thank you so much everyone! I hope other SN parents will share their experiences too, just reading about other families in the same boat helps me so much.

nicanmatt, I wish DS could FaceTime with a friend, but sadly, he doesn't really have any close friends. He has a lot of the trademark qualities of Aspergers, so he's way more drawn to adults and has a really hard time talking to kids. When you add in the technology aspect, I think it's just too many barriers for him. I don't know any of his classmates parents well enough to have shared his diagnosis with them either, so I feel like it would be harder to explain why I want to practice and that DS might do some rude things or just get up and leave if he gets uncomfortable! Also, what you said about constantly being ON is so, so true. You have my commiseration, too!

We started counselling, and were doing weekly sessions with me and both kids, working our way up to me being able to leave DS and DD with the counsellor for some play therapy/building play skills. I had 8 sessions on my own, then we only had 2 with the kids before the whole lockdown happened. I'm hoping that will help when we can start up again.

rebneen, thank you, and I get it. I lose my cool a lot too. It's just so much to feel like you can never turn your back on someone. I like the idea of a social story. I'm thinking of making a photo book for DS and DD of their friendship over the years, with just pictures of the two of them, to encourage the idea that they're friends, not rivals!

[katfco]

Have you been working in sensory time with him during the day?

[elderwand]

My DD is 11 very similar profile...her sister (NT) is 9. We have the same dynamic that feels like bullying in my own house! Game changers for us have been 1. Extra dose of adderall at 3pm 2. Individual counseling and ‘couples’ counseling for the 2 of them 3. Namenda, it’s an Alzheimer’s drug with off label for ASD. It has changed DD. It’s a complete transformation.

This is so hard! Hugs.