pinkdutchtulips , we have a dmdd diagnosis. I am not sure if this is a new diagnosis for you but we are on a brain based med combination that has been life changing. We went from an inpatient stay to no rages. the website rdmdd.org has all the information they also have a facebook page. There are also a few other dmdd parent support groups on facebook that have been really helpful through our challenges.
It will be a new dx but don't have any at this point. We're finally at a point where doctors, insurance companies and school have aligned themselves right. I just wish we could have gotten to this point alot sooner than 5-6y down the road. I'll have to check out the link. We have an appt w her pedi tomorrow to go over the Vandy survey results so we may (fingers crossed) walk out w a dx as soon as then. If not, the next step is the neuropsych eval.
I’m at a hard place I think with my 12 YO. He’s not diagnosed with ASD (not for lack of our trying) but even the pedi thinks he is on the spectrum. It’s a hard age and I don’t know what is just his personality, what is his age, and what is the ASD but he’s disagreeable a lot and hard to like some days. 😕 We love him to pieces but he’s just difficult. Then I feel bad thinking that.
I haven't posted in this thread, but I need a place to process. DS is 13, in 7th grade. He has diagnoses of ASD, ADHD, and general anxiety. 2 years ago we started homeschooling. I never had any real desire to homeschool, but we moved in December 2020 and the combination of Covid schedules/Zoom school and the lack of support from that school made it feel like the best choice at the time. We knew we would only be in that location for 2-3 years, and always planned on putting DS back in public school when we moved. We kept him enrolled in private OT and speech/social skills, and I really felt like he had gained a lot of good tools.
Today was his first day. I know that making that kind of change so far into the school year is odd, but with this move I need to return to work full time, so he needs to go to school. Also, I thought that starting now would give some time for him to get used to things, get to know some people, etc., before summer break.
He made it until the end of the day with no issues. His last class is robotics, and when the teacher said to put things away, he refused. Another student tried to help put his stuff away, and DS scratched and kicked him. His first day of school, and he is in ISS for the next three days. I am so frustrated, and also just so sad. I knew the transition would be hard, but I did not expect a violent meltdown on the first day. I feel like this will shape his entire experience at this school for the next year+ - the kid who hurt someone on his first day.
The school is doing the best they can to give him accommodations - his IEP was expired, of course, but they were following the general ideas until we can get things updated. I know he needs time to adjust and that this is a huge change. I just wish we could have made it through one day without this happening.
I’m at a hard place I think with my 12 YO. He’s not diagnosed with ASD (not for lack of our trying) but even the pedi thinks he is on the spectrum. It’s a hard age and I don’t know what is just his personality, what is his age, and what is the ASD but he’s disagreeable a lot and hard to like some days. 😕 We love him to pieces but he’s just difficult. Then I feel bad thinking that.
I'm sorry. I just want to say that you are not alone and I know exactly how you feel. It is really hard.
ohgillian you aren't alone in your feelings. I think they are very common. I myself feel that way on a regular basis. It is hard parenting kids with special needs. (hugs)
We finally, FINALLY! got DS in for evaluation--almost 18 months on a waiting list--and he's been officially diagnosed. Right now we're going to work on getting a 504 in place, particularly for starting middle school next year. The diagnosing dr was also going to put in a referral for him to see a counselor through the autism clinic. It's done wonders for DD.
Post by helpshareplease on Mar 24, 2023 17:29:54 GMT -5
my kid's hair is finally starting to grow out into a cute pixie cut. We have successfully kept her away from the scissors / hair cutting. lots of little things are clicking into place. Its funny how OT and other People have made their suggestions but what has helped the most is the simplest solutions that I have came up with my self. I feel kind of stupid for not employing them sooner. Lamps... well holy hell it is a different language for me. but she has been using it so much at school that at home she found the word for Trampoline in her "hit" words, and asked for an August birthday party at the Trampoline park. Like seriously huge deal. I suppose we will have her B-day celebration there, Just cause she actually asked and knows that her birthday is in August. (another milestone Knowing birthday & address phone #. Ill take what I can get!!!!)
I'm so sorry. I know that it's upsetting, but know that you are doing a great job and it's amazing that he got through 99% of the first day without a meltdown. It's a huge change and a lot of demands. So you have helped him gain a lot of skills. He just wasn't able to meet every expectation during the day and it probably kept building until he exploded. Hopefully this instills a sense of urgency for the school to get his IEP restarted. Consider requesting a functional behavioral assessment (if they are not already including that in whatever evaluations they are doing for the IEP) so that any future behaviors that negatively impact learning can be identified and interventions put in place. It sucks that they went straight to ISS when it won't do anything to curb any future behaviors, but I know there are probably standard disciplinary procedures. I hope his next few days go better.
Post by ProfessorArtNerd on Mar 25, 2023 8:15:35 GMT -5
Oh my god, you all don't know how helpful it is to know that other parents understand the feeling when your child is difficult. I know it'll serve her in life, but man, seeing other people recognize how Luce can be difficult really hurts.
Post by mysteriouswife on Mar 25, 2023 9:27:25 GMT -5
I found out last night my uncle is DX with all the same things DS has. Only he is more capable of navigating life. Looking back on my childhood it all makes sense. My dad also deals with OCD.
Post by PennyCandy on Mar 25, 2023 14:05:03 GMT -5
DS1 just got the medical ASD diagnosis yesterday, level 1-2. The appointment was a lot. We follow up with his regular developmental peds doc in a couple of weeks. I'm hoping that helps me begin to navigate this. I don't know where to start. There was so much information.
Our high school is refusing for my neighbors son to attend. They are insisting on a therapeutic day school at their cost and bussing provided. If the parents really want him in the high school what might be their reasons to refuse? He hasn’t attended in 2 years because he dislikes the therapeutic schools. He’s tried 2. They are upset with the high school but I am thinking the school may have its reasons. He also is a possible elopement risk. He walked home once from school without telling anyone. Is that reason enough to refuse to let him attend?
Our high school is refusing for my neighbors son to attend. They are insisting on a therapeutic day school at their cost and bussing provided. If the parents really want him in the high school what might be their reasons to refuse? He hasn’t attended in 2 years because he dislikes the therapeutic schools. He’s tried 2. They are upset with the high school but I am thinking the school may have its reasons. He also is a possible elopement risk. He walked home once from school without telling anyone. Is that reason enough to refuse to let him attend?
There are lots of reasons the school might have pushed for a more restrictive placement (the therapeutic school), although most school districts would love to reverse that placement because it's so expensive for the district.
However, your neighbor's have the right at any time to request an IEP meeting and ask the school to justify the more restrictive placement. Legally, the kid is supposed to be in the least restrictive environment that meets their educational needs, even if the school has to implement supports like a 1:1 aide to make sure he doesn't elope without someone noticing or special education services in the classroom or pulling him out for services for part of the day. If the district and parents can't agree on the least restrictive environment, the parents can follow the dispute procedure in your state. In my state, you can request a facilitated IEP meeting with a rep for the state DOE, and there's also an option for mediation. If necessary, they can request a due process hearing (before a judge). Most parents employ a lawyer for that option.
All of that information should be provided to them at every IEP meeting (or they can request a copy at any time), and it's probably outlined on the state education website as well as the parent training center for your state (which helps parents navigate the special education process).
Thank you! I’m trying to support them through the process, but I don’t know a lot of the actual behavioral issues that may have caused the school to choose a more restrictive option. He is over 16 and basically just not attending any school since he doesn’t like the therapeutic schools.
We came home yesterday from a week long sightseeing vacation. My 12 YO (essentially ASD) had a tough time and often wasn’t an agreeable travel companion.
He likes routine and vehemently dislikes walking long distances. So, this was not set up for him to succeed.
2 different days he asked to stay at the Airbnb and we agreed. But at least once he missed something i think he would have liked. So next time i will plan ahead for him to stay home every 3rd-ish day.
My other kid was a delight and I felt sad imagining if I had 2 kids like that. 😕
waverly, is he violent or has threatened others? that is usually why you get sent to a therapeutic school, usually they try really hard to keep you in your district because of cost and LRE. They probably need an advocate or a lawyer if they are going to fight it though
I have a two week planned vacation for myself, my mom and my DS at the beach, 9 hours from home. My DH will be home most of those two weeks and I’m nervous my kid is going to get antsy by day 5. This vacation is more for me to see what beach living is like, as I’d like to spend my summers there moving forward and possibly be a snowbird there in my retirement years.
All that to say, I fear my kid is going to be over it quickly and make the rest of the trip miserable. He can be pretty antisocial when he’s in a mood….
My safety net is that I’ll drive us down and it comes down to it, I’ll drive him home early and just fly back down.
Post by pinkdutchtulips on Apr 11, 2023 19:05:40 GMT -5
She got suspended AGAIN today for ditching class in a room off limits to students then refused to comply with a backback search. When she refused the search, she walked off campus with the SRO and campus supervisors trying to track her down. She later called me telling me that she's at home.
It baffles me that inpatient won't take her. I'm running out of options as she refuses therapy and is super reluctant to take ANY medication (it still won't make me want to do work - her words - so why bother). Inpatient is becoming my only option and even they won't take her bc she's not 'enough' of a harm to herself or others.
At this point she's failed all of middle school and is being launched into HS without learning anything since the middle of 5th grade. As a parent, I am terrified of her future. It's her dad's sick joke on me. She inherited his brain chemistry, the same brain chemistry that lead him down a path NO ONE should go down (HS dropout (eventually got his GED), felon, jail time, substance abuse issues).
She got suspended AGAIN today for ditching class in a room off limits to students then refused to comply with a backback search. When she refused the search, she walked off campus with the SRO and campus supervisors trying to track her down. She later called me telling me that she's at home.
It baffles me that inpatient won't take her. I'm running out of options as she refuses therapy and is super reluctant to take ANY medication (it still won't make me want to do work - her words - so why bother). Inpatient is becoming my only option and even they won't take her bc she's not 'enough' of a harm to herself or others.
At this point she's failed all of middle school and is being launched into HS without learning anything since the middle of 5th grade. As a parent, I am terrified of her future. It's her dad's sick joke on me. She inherited his brain chemistry, the same brain chemistry that lead him down a path NO ONE should go down (HS dropout (eventually got his GED), felon, jail time, substance abuse issues).
I’m so sorry you’re still struggling. Have you discussed the options of a more restrictive environment for her? There are nonpublic schools that offer lockdown campuses that she can’t just walk out of or even residential facilities. The district should pay for these options since they are unable to educate her or keep her on campus.
Post by arehopsveggies on Apr 12, 2023 20:26:33 GMT -5
Checkup with the pedi today where I begged- I’m tired of waiting to see if he grows out of his quirks, can we please start trying to get an autism diagnosis before he outgrows DD.
The clinic I thought we were going to, five hours away and doesn’t take our insurance, is a 4 year wait usually (what I’ve been told)
Apparently the closer university where we already do therapies opened an autism clinic, so we are going to see if that’s faster. And the website says free!! The therapies there have been great and dirt cheap, so I’m feeling hopeful
But the referral is complicated. They want screeners already done and submitted and our pediatrician hasn’t done anything. I’ve done online ones myself.
She got suspended AGAIN today for ditching class in a room off limits to students then refused to comply with a backback search. When she refused the search, she walked off campus with the SRO and campus supervisors trying to track her down. She later called me telling me that she's at home.
It baffles me that inpatient won't take her. I'm running out of options as she refuses therapy and is super reluctant to take ANY medication (it still won't make me want to do work - her words - so why bother). Inpatient is becoming my only option and even they won't take her bc she's not 'enough' of a harm to herself or others.
At this point she's failed all of middle school and is being launched into HS without learning anything since the middle of 5th grade. As a parent, I am terrified of her future. It's her dad's sick joke on me. She inherited his brain chemistry, the same brain chemistry that lead him down a path NO ONE should go down (HS dropout (eventually got his GED), felon, jail time, substance abuse issues).
I’m so sorry you’re still struggling. Have you discussed the options of a more restrictive environment for her? There are nonpublic schools that offer lockdown campuses that she can’t just walk out of or even residential facilities. The district should pay for these options since they are unable to educate her or keep her on campus.
I had a long chat w her principal and vice-principal yesterday about 1- keeping her on campus and 2- passing her along to HS after failing middle school. They argue that they've tried to educate her but she has refused to cooperate and participate and bc of the refusals, they're trying everything to get her back on track but its like throwing spaghetti at a wall to see what sticks. IMO the evaluations should have happened in 3rd grade when all of the issues started. This was the first year she was eligible for services as they (the district) FINALLY agreed w me to have her evaluated after ignoring my request the prior year. Additionally, the state of CA will not retain kids for K-8. So there is nothing that canbe done by me or the administration.
waverly , is he violent or has threatened others? that is usually why you get sent to a therapeutic school, usually they try really hard to keep you in your district because of cost and LRE. They probably need an advocate or a lawyer if they are going to fight it though
They did not disclose anything to me. But I am thinking something else happened at the school because there are police/ ambulance there frequently as often as once a week at their home. When I had asked a few years ago about the ambulance they told me the child is bipolar and said that diagnosis requires frequent calls for police/ ambulance. Since we never see a medical issue i.e. leave in an ambulance, then we believe there is a physical behavioral issue that requires police intervention. I think they may have some denial in terms of the level of severity and what the high school can handle. If it were solely an elopement issue, a one on one aid could possibly call in assistance with that, but then if he escalates the school definitely wouldn't want to be dealing with that, and now the teen is the size of a full grown adult essentially.
Although I do know another child that attends therapeutic school for ADHD and they haven't been violent, so it might be a bit more common here to suggest that because we have good access to a lot of therapeutic schools nearby.
I’m so sorry you’re still struggling. Have you discussed the options of a more restrictive environment for her? There are nonpublic schools that offer lockdown campuses that she can’t just walk out of or even residential facilities. The district should pay for these options since they are unable to educate her or keep her on campus.
I had a long chat w her principal and vice-principal yesterday about 1- keeping her on campus and 2- passing her along to HS after failing middle school. They argue that they've tried to educate her but she has refused to cooperate and participate and bc of the refusals, they're trying everything to get her back on track but its like throwing spaghetti at a wall to see what sticks. IMO the evaluations should have happened in 3rd grade when all of the issues started. This was the first year she was eligible for services as they (the district) FINALLY agreed w me to have her evaluated after ignoring my request the prior year. Additionally, the state of CA will not retain kids for K-8. So there is nothing that canbe done by me or the administration.
I’m very sorry. I’m still baffled at suspending students who don’t want to be there. You are giving them a free pass! Keep them at school. Maybe I’m not educated to know the reasoning behind suspension. I have never understood it even as a kid
I had a long chat w her principal and vice-principal yesterday about 1- keeping her on campus and 2- passing her along to HS after failing middle school. They argue that they've tried to educate her but she has refused to cooperate and participate and bc of the refusals, they're trying everything to get her back on track but its like throwing spaghetti at a wall to see what sticks. IMO the evaluations should have happened in 3rd grade when all of the issues started. This was the first year she was eligible for services as they (the district) FINALLY agreed w me to have her evaluated after ignoring my request the prior year. Additionally, the state of CA will not retain kids for K-8. So there is nothing that canbe done by me or the administration.
I’m very sorry. I’m still baffled at suspending students who don’t want to be there. You are giving them a free pass! Keep them at school. Maybe I’m not educated to know the reasoning behind the suspension. I have never understood it even as a kid
You are not alone and this was after me reminding borderline pleading with adminstration to give her an in-school suspension since it only rewards her poor choices an out of school one. I get a consequence was needed, no argument from me BUT its the manner in which the consequence is doled out that is baffling. The school said that an in-school suspension is not possible given why she was suspended (refusing to allow admins to search her backpack, refusal to comply w admin requests, running off campus). They wanted to send a 'hard' consequence *face palm* this is NOT a hard consequence to her, this is a free day off school, hardly a deterrent to poor behavior. To me it simply underscores the necessity if the IEE (neuropysch eval) bc there is far more than simply ADHD at play. Until we figure that out, I'm concerned that nothing will work to deter her behavior.
I went to the bar mitzvah this morning. It was absolutely as hard as I imagined it was going to be. I have these terrible terrible feelings when I see other people’s kids do things that mine can’t achieve. I brought my 12-year-old DS with me, and he didn’t even do a good job sitting quietly beside me during the service. We left before the omega despite my RSVP’ing for 3 (my DD is sick) so now I feel guilty about that too.
The leaflet was all “he takes high school math and is fluent in Portuguese and does X and Y and Z activities and volunteers at X place.” It was awful.
I dropped DS off at home and now I’m just sitting in the parking lot of a grocery store in my car, just getting a grip before I shop. Or trying to get a grip.
I went to the bar mitzvah this morning. It was absolutely as hard as I imagined it was going to be. I have these terrible terrible feelings when I see other people’s kids do things that mine can’t achieve. I brought my 12-year-old DS with me, and he didn’t even do a good job sitting quietly beside me during the service. We left before the omega despite my RSVP’ing for 3 (my DD is sick) so now I feel guilty about that too.
The leaflet was all “he takes high school math and is fluent in Portuguese and does X and Y and Z activities and volunteers at X place.” It was awful.
I dropped DS off at home and now I’m just sitting in the parking lot of a grocery store in my car, just getting a grip before I shop. Or trying to get a grip.
I'm so sorry. ❤️ You are a great mom. Just remember that the leaflet is just like junior Facebook. All positives, no struggles.
I just wanted to update that neighbor kid is back at his home high school, so I hope that works out for them.
In terms of my DS, we've added a lot of executive function support to his IEP. His math tutor is helping because my theory is there was math learning loss due to the pandemic, and she has brought him back, so he is up 16 percentage points. Or it's possible it was just an off test day in the past, but he had 2 of them like that. The test they give determines placement in high school classes, and even though he is going into 7th grade, I just want it to be consistent rather than trending downward. The tutor has helped so much (mostly with my sanity and lack of patience). I'm not more patient, she just takes the task off my plate, so I can pretend to be more patient. I think she was a really good decision that DH and I made together.
DS had his cardiology exam, and is stable. We hadn't been in 2.5 years, and I think I sort of pushed it out of my mind and now am back to realizing that hey this is a lifelong issue that will require surgeries in the future and possibly a pacemaker. But, if we can try to see that all stays stable maybe we can hold off on those kinds of things until the 30-5o year age range. So while ultimately, it was a stable/ not bad news appointment, I think I am realizing that this is kind of major. Before, he had even more severe heart issues that that required surgery, and hearing loss, so I was just focused on getting through all that. And now, all the other health issues are addressed, but unfortunately this one will linger and be lifelong.
Post by regencygirl on May 11, 2023 7:21:54 GMT -5
How do you all deal with the feelings of isolation and the loneliness? We had soccer practice last night, and it was not a good night for DS. Sometimes he participates. Sometimes he does not. But as I watched some of the other parents interacting and talking, and then listened to their kids talking - it became clear to me once again that even though I'm the coach - I started this team so my kid could get a fair shot at playing on a "regular" team - that they hang out outside of games / practices and their kids do. And it really hurts that my son is never included. They all attended his birthday party, but I sometimes wonder if the attraction wasn't so much hanging with my son as it was it was held at a trampoline park. There is one family that has had him over for playdates. We usually host more, simply because Mom and Dad work some weekends and it's easier for all for us to host. I've hosted other kids over to use our pool and they're all eager to come for that, but when I hear "hey so and so, can x come over to hang out this weekend?" and not once has an invite been extended to my son - I want to scream.