SN/ND Check-in

[mae0111]

Checking in with other parents of special needs/neurodiverse kids...

[mae0111]

DD1 (14.5, ADHD, NVLD) has struggled with hyperfixation for a long time, but it seems heightened lately. Maybe having to do with anxiety? She recently spent 4 weeks at sleepaway camp. This was her 5th year there, and it is absolutely her happy place, but many of her friends said that they're not going back next year. Her closest camp friend lives 5 hours away with many others living in Europe, so this is really the only time she gets to see/hang out with these kids. She was incredibly sad/borderline depressed when she came back, barely getting out of bed for a few days.

In an effort to get her moving again, DH and I gave her some tasks to complete related to an upcoming camping trip. Small things like cleaning up the camper (with a detailed to-do list), making up the beds with clean sheets... doable, and would give her something to look forward to. But this trip has become all-encompassing, and she can't think about anything else. She interrupts conversations and demands that we stop what we're doing to help her with something trip related. She wants me to stop work to drive her to a craft store to buy her something for the trip. Trying to manage expectations (I can't go right now, you don't need more things - spending is an issue for her) leads to tantruming, tears, slamming doors.

Does anyone have any tips for managing expectations/timing, etc.? Obviously this is not age-appropriate - she should be able to wait her turn at 14.5. Quietly explaining "Not right now, but give me 15 mins," or explaining why we can't spend MORE money at the store right now, but once you've earned your allowance we can talk about it... this hasn't worked at all. Do I just keep trying? I feel like I've been pretty consistent with it.

[macmars45]

DS(8 autistic & adhd) is all in on you can't make me do things I don't want to do. It is SO frustrating! I introduced consequences to having an attitude and refusing to work with his tutor that I've been dealing with all summer. So we started the day off with DS crying about how he only wants to do things his way. Me too kid, me too.

Week 6 of summer break over here. Four more weeks to go.

[mommyatty]

DS (10, ASD, ADHD, anxiety and depression) has been attending a camp this week to become a video game streamer and we also checked out an ESports team that he’s super-excited about. He’s loving the camp. One kind of funny thing is he mimics accents perfectly, and yesterday he was streaming with an Australian accent (he does this a lot when he’s excited or nervous) and someone on the live chat asked him where in Australia he’s from. He was so excited!

We switched his meds from Cotempla to Jornay PM and the shift seems to be pretty awesome. He wakes up already medicated (the meds kick in about 8-10 hrs after you take them) and then he’s rocking his day.

We are waiting to hear from his school about having his first IEP meeting. One of the things we decided upon last year was letting him know early who his teachers will be and possibly letting him meet them before the official meet the teacher.

[arehopsveggies]

I think my 9 yr old needs an adhd med adjustment. He’s had a big growth spurt and we haven’t changed his dose in 2 years. Our dr is retiring, but I hoped to get in one more time before finding someone new. But it’s been a hassle since they’ve had reduced clinic hours for summer.

My 6 year old is struggling right now. He had a loose tooth that was pushing him past his sensory limits. We got that pulled this week and he is finally eating, but still struggling with end of summer/back to school emotions. August is always so hard on him, but I’m hoping that having me just across the hall will make it easier? This is his first year at my school. Maybe his teacher will be there when we go in tomorrow to start setting up my room, that would help if he remembers how much he likes her.

[kitty]

Jul 25, 2024 8:45:37 GMT -5 mae0111 said:

 
Does anyone have any tips for managing expectations/timing, etc.? Obviously this is not age-appropriate - she should be able to wait her turn at 14.5. Quietly explaining "Not right now, but give me 15 mins," or explaining why we can't spend MORE money at the store right now, but once you've earned your allowance we can talk about it... this hasn't worked at all. Do I just keep trying? I feel like I've been pretty consistent with it.

My DS is 10.5 (no diagnosis not for lack of trying but many ASD-like qualities) and I still have to resort to a preschool level approach to this. We do a check in and discuss the "rules" at the beginning of each potentially problematic outing (or on the drive there) no matter how many times we've already had the same convo. 

So on the way to the craft store or in the car before we go in, I'd say "Now remember we are here only to get X. We are not going to spend any money on Y because we don't want to go over budget." Then if a discussion/pushback ensues, it is starting at a calm moment and less likely to devolve into tantrum. If I was WFH and couldn't be disturbed, I'd find him and say "I'm logging on to work now. I can't be interrupted for the next X hours. I'll come and find you at noon when I take my lunch break." Rinse and repeat.

[mae0111]

kitty, Thank you! I do try to do the same thing with her and with DD2 (ADHD/anxiety). "I am working and I cannot be disturbed. I will be checking texts at X time, so if you need something, just text me and I'll respond when I take a break." I'd say it works about 50% of the time.

DH also works from home 100% of the time unless he's traveling. If I don't respond immediately, even with this caveat, DD1 will go to him. Since he's on calls for 10-12 hours a day, it sends her into a tailspin if she can't get him to respond either. Often he's presenting and she's banging on his door.

We do the same thing before going to stores, or if I'm saying no to something. About 25% of the time she knows that she's being unreasonable and kind of scoffs and says OK.

We'll keep working on it!

[keyslover]

I just want to say it’s exhausting either way you approach things- whether you are constantly remembering to manage their expectations and timelines or whether you forgot to do so and then deal with the fallout of that.

God forbid we have plans and expectations managed and I forgot one thing!

[waverly]

DS had the odontogenic mass (tooth material) and 2 wisdom teeth out on Tuesday. Doctor didn't want to do the uppers because DS is on the young side and they weren't down far enough. DS is currently in the chipmunk stage poor guy, but otherwise pain levels around a 3, so not too bad.

DD is at camp and it has been really nice not to have her around so we can focus on DS and his surgery recovery. Having her home without him and vice versa has been eye opening as far as how much DD instigates in fighting with her brother and how much her behavior is more of a problem

DS's problem is more peeing all over the seat, lying about cell phone and switch. Generally, we take away the switch during the school week, but in summer and after surgery we let him have it, but it has been way too many hours a day. So once he recovers we might take it away again. That is kind of our main issues especially the lying gets to me because it is his way of making an excuse sometimes about things that don't matter. For example, we mentioned going to a concert and he lied and said he prefers opera, and I was like opera? Do you mean classical music? And he was like oh classical music. Did not know he likes classical music, and I think it is a lie, but I might force the issue and go to a concert. What's the worst that can happen, we see a classical music concert lol.

DD's issue is her more volatile personality. Not exactly sure how to handle that because DH went to counseling as a child for his and it was a very negative experience for him, not the counseling, but the way his family said that everything was his fault and his abusive mom didn't take responsibility. So instead, he and I are doing an enormous amount of co-regulating and counseling type work at home to prove we are with her, but it is kind of tiring, but she is improving, so it is kind of working. Ugh

I need to decide if I get the tutor for DS again this year, but I am leaning towards yes, it only helps us parents. I want him to work on advocacy this year. Asking his teachers questions during teacher advisory for example.

[campermom]

DMDD doesn’t usually turn into bipolar, it typically (if it continues or worsens) presents as depression/anxiety in adolescence and adulthood. My 8 year old is starting to move in the depression direction. We are holding onto meds (which have been doubled and added since Feb) until school starts so we can see progress better in more consistent environments.

We got through 2 weeks of camp with a 1:1 each day.

It’s just so hard to believe that things were so good and stable last year. I even asked the Dr on 2/9-does he even meet the criteria for DMDD anymore? And our world fell apart over the next few months.

He’s on abx for suspected PANDAS, for about a month now.

[kitty]

Jul 25, 2024 13:33:34 GMT -5 keyslover said:

I just want to say it’s exhausting either way you approach things- whether you are constantly remembering to manage their expectations and timelines or whether you forgot to do so and then deal with the fallout of that.

God forbid we have plans and expectations managed and I forgot one thing!

Agreed!

I am seeing incremental success but it's glacial. There are some times where he can basically tell me what I was going to tell him so I think the long term repetition can lead to him having these thought processes more independently (at least I hope so). And I think that hope is what keeps me going even though it is exhausting.

I'm sure some of it is the age too for mae0111 since you have teen attitude in the mix. Even my 13yo NT DD will get on my case about things when I'm not giving in to what she wants which is something she didn't do much at age 10. So hopefully that gets better with time as you get through the teen years.