lucybrown what about a watch that vibrates to remind them to go every x hour? And all the teachers know to just let them go if they need too (maybe with a hand signal)? DS' teacher has a signal all the kids use so they don't have to ask. Also they can go at literally any time. It's worked out so much better than last year when he had to raise his hand, wait to be called on to ask and got told to wait at some points of the day. My DS is much younger (6.5), however he struggled hard with PT until this past summer. Last school year he can home wet often especially in the beginning of the school year & winter months.
Aaaannnnndddd the other shoe dropped today. We got a message from their doctor saying the genetic tests she ran on my kid came back with a chromosomal abnormality. We are being referred to genetic counseling. No specifics on what the abnormality is.
macmars45, we have a vibrating watch and used it for awhile with mixed results. They often snoozed the alarm and didn't stop to use the bathroom.
We've had a dry couple of weeks. We went through their day and planned 3 times to use the bathroom. Previously they were only going once or twice, so this has helped. The other thing is that last week we increased their Adderall, which I think has made a significant difference. They don't like taking it because it slows their imagination, but were having some issues with staying on task in school. We'll see, it's always a process.
Skin picking behaviors have also decreased slightly, so perhaps we're going to have to find a solution to the imagination thing. I get it. I'm a creative person currently self-medicating with caffiene instead of taking Adderall. We'll see.
Thanks for your response. Along with DMDD DS also gets the caveat or "Concern about the behavior of an adopted child." So while I don't disagree with DMDD, he has attachment issues from adoption trauma so we link a lot of his behaviors to that because he really only displays ANY behaviors to those he is closest to emotionally.
wesleycrusher, rdmdd.org is a very helpful website for families with dmdd, it honestly changed our lives because we are now on the brain based protocol and doing better than ever (for 2 months now- our longest stable streak ever) I'm also on some fb groups for dmdd and I know a lot of the kids have been adopted so I know there is a lot of overlap with dmdd, rad, and other adoption traumas
I'm so proud of DS6! He has been having lots of social issues with a friend at recess for months now. H and I coach him through scenarios as he tells us about them. Yesterday a lot of things came to a head and over dinner DS told H and me he needed a teacher's help communicating with his friend. So I emailed his teacher & SLP. His teacher had the school counselor meet with both kids so DS could communicate effectively with his friend. His teacher emailed me back that the counselor was so proud of DS for communicating clearly with his friend! I'm so proud DS told H and me he needed more help and that with the counselor's guidance he was able to communicate effectively with his friend! <3
My son and my niece have both been on Vyvanse for years. We switched DS from Adderall when it started becoming hard to come by at times-- I think he was in high school or maybe a freshman in college. Niece started on it.
I know that binge eating is an indication, but TBH, neither of them found it helped with weight control without doing work around it. I'm not absolutely certain either meets the criteria for binging, but both do binge at times. DN has been diagnosed with "disordered eating" where DS is more about emotional eating from stress/boredom. That said, DS recently decided independently to do something about his weight and crappy diet and has been amazing at it for several months now. Almsot too good at it. He's lost 30-40 lbs I'd guess; he doesn't tend to weigh himself. I don't know if the Vyvanse is helping that or if he's inherited my MIL's tendency to eating disorders.
Post by SusanBAnthony on Dec 10, 2022 10:39:06 GMT -5
vamoose you child sounds very similar to DS. Definitely has ADHD, also has sensory stuff. I always thought he was autistic but he didn't have the stereotypical repetitive behaviors. DS was given an educational autism diagnosis in mid elementary. He has neuropysch evals before and after that said no, not ASD, just a bunch of things that match up (ADHD, Sensory, social skills challenges, poor executive functioning).
Well he just had another neuropysch at age 15 and got a medical autism diagnosis. They said it's because the gap widens over time (I think I've read autistic kids present with 2/3 the maturity of typically developing peers so that gap widens over time).
I think because there is so much overlap with ADHD among other things, they miss a lot of borderline kids or kids who don't do some of the more stereotypical things. Like DS never flapped his hands. We always said no to repetitive behaviors. But lo and behold after reading about different non-stereotypical presentations, his repetitive button pushing since toddlerhood would have counted and I just never thought about it like that.
Sick doctor appts for DS(6) are so frustrating! We rarely see his doctor for these appts. Almost always someone else in the practice. I always lead with he's autistic. Despite that they insist that we should really try a neti pot or flonase or or or. Like I dare you to try using a neti pot on my kid! I double dog dare you! It's.not.going.to.happen. Or you should really give him tea with honey for his cough. Like I've never tried that before. *eye roll* I even explain that textures and taste are huge challenges for DS and they look at me like I have 3 heads.
Does anyone have a suggestion for a kid tracker? Today mine decided to walk home from school, without telling anyone, taking an exit on the other side of the school from where I wait, that leads you to a path up the mountain. We live in the next valley coming off the mountain. A mountain with recent aggressive coyote sightings. SO that's great. Luckily they asked a neighbor to text me before wandering off again. blarg.
Ds1s bday is 1/5 & he wants to have a party but I’m seriously concerned no one will come 😢 what should I do ? I tried encouraging him to do the “we give you the money we would spend on a party” option but he wants a party like his brother had ….. I considered spending more than I normally would to rent an awesome place out but I don’t know….
Ds1s bday is 1/5 & he wants to have a party but I’m seriously concerned no one will come 😢 what should I do ? I tried encouraging him to do the “we give you the money we would spend on a party” option but he wants a party like his brother had ….. I considered spending more than I normally would to rent an awesome place out but I don’t know….
We are doing a birthday party in late January (1/22 for a cancelled early December date). Do you think he'd be up for that? I also think if your school starts jan 3 or so, most people will be back to normal by that next weekend. But I'd text 2-4 key people to find out if they are free
Ds1s bday is 1/5 & he wants to have a party but I’m seriously concerned no one will come 😢 what should I do ? I tried encouraging him to do the “we give you the money we would spend on a party” option but he wants a party like his brother had ….. I considered spending more than I normally would to rent an awesome place out but I don’t know….
We are doing a birthday party in late January (1/22 for a cancelled early December date). Do you think he'd be up for that? I also think if your school starts jan 3 or so, most people will be back to normal by that next weekend. But I'd text 2-4 key people to find out if they are free
I should have clarified - i don’t think people will come because he really doesn’t have friends. He hasn’t been invited to a party since kinder when the whole class was
We are doing a birthday party in late January (1/22 for a cancelled early December date). Do you think he'd be up for that? I also think if your school starts jan 3 or so, most people will be back to normal by that next weekend. But I'd text 2-4 key people to find out if they are free
I should have clarified - i don’t think people will come because he really doesn’t have friends. He hasn’t been invited to a party since kinder when the whole class was
What grade is he in? My 3rd grade DS is having his first non-family party on the first Friday in Jan. He doesn’t have any outside of school friends (no official ASD since he ‘passed’ the ados twice but socially delayed and I suspect may be someone who gets diagnosed in adolescence). He’s only ever been invited to one non-entire class party and one playdate but his teacher told us during his conference that he gets along with everyone in class.
I was terrified when I sent out the evite that no one would come but 8 kids RSVPed yes and when we add his 2 siblings I think it’s enough to feel like a party. If we had only gotten a couple yesses I was going to ask DD’s BFF and her brother to come and some localish cousins that we don’t usually do birthday with but I was going to explain the situation to the parents.
Post by SusanBAnthony on Dec 17, 2022 13:34:23 GMT -5
DS has an infection under his toenail. We have now been to urgent care twice and minute clinic twice. His primary care clinic was unhelpful on the phone. This latest trip to urgent care, they said to pull his nail up along the side. That it will be painful, but try to pull it up every day, or cut it along the side where it is attached to his skin.
Lolol. Dude. No. It's not happening. But thanks for the helpful advice, here's 100 more dollars.
kitty Ds1 is in 3rd grade too =) I think I might encourage him to do a party somewhere a lot of other kids do parties & like to go to increase the odds people will come. DH suggested inviting more kids than we typically would to increase the odds a decent number of kids will come even if that means we risk spending more money than is ideal.
DS has an infection under his toenail. We have now been to urgent care twice and minute clinic twice. His primary care clinic was unhelpful on the phone. This latest trip to urgent care, they said to pull his nail up along the side. That it will be painful, but try to pull it up every day, or cut it along the side where it is attached to his skin.
Lolol. Dude. No. It's not happening. But thanks for the helpful advice, here's 100 more dollars.
The ingrown toenail stuff from Dr. Scholl's softens the nail really well overnight/24 hours. Then you could try sliding dental floss under it. My daughter has a terrible fear of nail cutting and a tendency towards ingrown nails, but apparently that combination and allowing her to do it herself is okay. But I feel you. ❤️ We also have a prescription for propanol (and used to use Xanax).
Post by mysteriouswife on Dec 18, 2022 21:50:08 GMT -5
Anyone want to send me a yearly reminder to not travel with DS the day after school lets out for a long break?
I feel like a shit mom right now. I lost my cool on DS and yelled at him. Now he’s in the floor stimming and crying. He is in full blown anxiety and I cannot take anymore. This shit is too hard.
Update- he’s finally calm and so am I. I think we both hit our limit. I hate when I lose my cool. I know he cannot help his reactions. I do love that he has learned to self soothe and calm his crying. After a few mins of stimming and snuggling a pillow he was ready to snuggle with me. H walked in the living room and walked out. He knew it was best to just leave DS and I be. He sent a text to DD and asked her to turn all the sounds off and dim the Lights. Having a partner in this is extremely helpful. I am glad DD is starting to understand and no longer having bouts of jealousy. This cannot be easy for her. I know how hard it is on H and myself.
mysteriouswife (hugs) It is so so hard. I'm glad it ended up okay. It is priceless to have a partner in raising an ASD kid.
SusanBAnthony sounds like you saw the same dr I took DS to check if he had the flu. He told me to use a neti pot on him for his congestion. At least I only paid $20 for that unhelpful advice.
kitty Ds1 is in 3rd grade too =) I think I might encourage him to do a party somewhere a lot of other kids do parties & like to go to increase the odds people will come. DH suggested inviting more kids than we typically would to increase the odds a decent number of kids will come even if that means we risk spending more money than is ideal.
This was basically my approach. I figure even if we spend $$$ on this party, he’s still overall way behind my social butterfly DD in spending on parties since he’s never been ready to try to have one before and she’s been having friend parties since age 3!
Y'all. It's been a month. Any tips for helping my 5 yo with emotional regulation?
With the holidays, his birthday, and constant viruses for almost two months, he has been so dysregulated. Our evenings (and most weekends) are full of challenging behaviors and meltdowns. It's exhausting and causes the rest of us to become dysregulated and tense. I can see he's struggling and feel so helpless. But we're struggling too. I'm tired of feeling like we all walk on eggshells or that his needs overshadow the rest of us.
We're on day 2 of a fever, a blizzard warning, and have 10 days of winter break left. Lord help us.
Not gonna lie, when things get tough around here, I just let my kid zone out in his iPad. That’s his #1 currency and I just let him play so the rest of us can get a break. Or, if he’s melting down, I hug him tight as long as he wants. If that doesn’t help, I just walk by away and let him tantrum/cry in his room.
Time off from school or being out of sync with a schedule can cause so much disruption for our children. I just go down the path of least resistance.
Post by yourmother on Dec 22, 2022 20:42:56 GMT -5
My DS6 has started having anxiety about getting together with family for Christmas Eve and Christmas evening. Ugh. I just gave up and told him he can stay home. Hoping we can soothe his fears and we can go and enjoy an hour or so with our family (my in laws). I know they’re going to be disappointed if he doesn’t go. I’ll still go to represent our family, though.
sonrisa - any updates on the genetic testing? Have you been able to find out what it is?
PDQ: A sequence of deleted genes of unknown significance. We are now both going in for testing to find out if we were carriers or if this was spontaneous. They don't know the specifics but it includes a gene for coding a protein involved in mitochodria. We need to run cardiac testing since it can be related to heart problems. These deletions can be associated with moderate to significant intellectual impairment, but not for our kid.
My DS was 5 last year at this time. Christmas was rough! Really hard! DS had a huge meltdown on Christmas Day last year. He gets really aggressive when he's melting down. We take him to our family room and have him hit pillows, the couch, a big stuffed bear etc. Once he's calmed down he gets to play video games or watch tv. Every year and holiday has been a learning experience of how we can accommodate DS better. Eventually that might mean he just stays home. The only things he likes about Christmas are the cinnamon rolls and the presents. The overall noise level, amount of people, other food and how long things take are really hard for him. I already planned for DS to have a quiet room to play with his legos at my parents' house on Christmas this year. H and I will take turns hanging out with him. I'll pack his noise canceling headphones. He will eat at a different time from everyone else. H and DS will probably leave early (his time limit is usually roughly 2 hours) and I'll come home later if I'm feeling up to staying longer.