SN and ASD parent check-in

[mysteriouswife]

I haven’t seen one. If there is one let me know and I will have this one moved.

Tonight I was so proud of DS. He had a class performance and he stood there the entire time. They had him placed where he could exit safely and quickly if needed. He did stim a little. The part we got tickled at was him trying to take his shirt off. We had two on incase this happened. He gets hot and overstimulated easily. He was wearing a button up shirt. He couldn’t get it unbuttoned. DD and I were giggling the whole time. One of the parents next to us noticed and said he understood. He was also ready to come out of his dress shirt. So it was nice that parents were understanding and not judging. One of the girls beside DS helped him after the show to button his sleeves. It was a sweet gesture making my mom heart melt.

And his evaluation should be wrapped up next week. We will schedule an IEP meeting for March. The last of our paperwork came home today. Fingers crossed we get the help he needs approved

[namasteak]

We continue to fight for DS1 to receive SPED and GT services. It came to a head when he tested at a public GT school and he came out in tears due to how he was treated & them refusing to give him accommodations. This goes on his academic record so a major violation so I escalated to their principal who contradicted district policy the entire call. It has now been escalated past the director of GT for the district and to the executive director. An official state school board complaint is being filed soon.

[namasteak]

I am SO PROUD of him for advocating for himself . That has been an IEP goal for over a year ! He was very harshly shut down so I hope it didn't set him back too much.

[mysteriouswife]

Feb 16, 2023 22:31:40 GMT -5 namasteak said:

I am SO PROUD of him for advocating for himself . That has been an IEP goal for over a year ! He was very harshly shut down so I hope it didn't set him back too much.

m
This is always a huge step! Advocating for yourself is hard for a lot of people no matter the age. So knowing he can do it is probably a relief.

[pinkdutchtulips]

Things are not going well …. She was suspended from school for the 3rd time this semester (semester started in early Jan) and she’s demanding Independent Study on her terms. We have an emergency IEP meeting next Weds to address this. I’m looking at inpatient programs and psyche evals concurrently as this madness has to stop. I’m tired of being given the runaround about getting her properly dx’d so we can get treatment started. It’s been 5 years since I started actively looking for answers and 8y since it was first noticed and brushed off bc she was one of the youngest in her class.

I’m tired of this effecting every facet of my life - home, work, J.

[mysteriouswife]

pinkdutchtulips I’m sorry you are struggling. I hope you get help during the IEP.

[jg183]

pinkdutchtulips, so frustrating. Do you have a sped advocate or lawyer? We got an advocate through a lawyers office and the retainer although it was very expensive has lasted way longer than I expected. Also as soon as I had a lawyer on my team I've gotten treated WAY differently and everything I've asked for immediately when we got nothing originally

[pinkdutchtulips]

Feb 17, 2023 11:23:08 GMT -5 mysteriouswife said:

pinkdutchtulips I’m sorry you are struggling. I hope you get help during the IEP.

Webhave an IEP in place … this meeting is about her request for independent study which I (and it’s safe to say her teachers too) am against given our catastrophic experience w distance learning her entire 6th grade year - she lacks the very things IS requires, self-motivation and focus.

[pinkdutchtulips]

Feb 17, 2023 11:27:52 GMT -5 jg183 said:

pinkdutchtulips, so frustrating. Do you have a sped advocate or lawyer? We got an advocate through a lawyers office and the retainer although it was very expensive has lasted way longer than I expected. Also as soon as I had a lawyer on my team I've gotten treated WAY differently and everything I've asked for immediately when we got nothing originally

No to either based on the cost. It’s not so much the school not doing anything (although it took them 5y and me screaming why has she failed 2 grade levels while you (the district) did NOTHING!! to get her evaluated to find the SLD - Inattention. It’s the medical community and insurance not providing the services we need at a cost I can afford. Being solo single parent sucks sometimes … this is one of those times. All of her issues (why she was suspended, her lack of desire to attend class, her failure to comply w school rules) are behavioral but I don’t know what they are or how they can be treated. She adamantly refuses therapy so that avenue is shut down

[jg183]

pinkdutchtulips, I know its super frustrating. My son has been refusing therapy lately although the therapists show up at our house... even more frustrating. A lot of research says until the brain is stable on the right medications it can't access therapy which is the theory I'm going with in our situation

[pinkdutchtulips]

Feb 17, 2023 11:38:38 GMT -5 jg183 said:

pinkdutchtulips, I know its super frustrating. My son has been refusing therapy lately although the therapists show up at our house... even more frustrating. A lot of research says until the brain is stable on the right medications it can't access therapy which is the theory I'm going with in our situation

I’m in the same spot. I won’t even enter entertain the idea of therapy w her for the same reason - meds to take the edge off and stabilize her THEN revisit the idea of therapy.

[wesleycrusher]

pinkdutchtulips I am sorry. I can relate in the impact that my child's difficulties have had on my own life- it's just all-encompassing and I ruminate on things constantly at home, at work, with friends. I have thought about seeking therapy for myself to help navigate it all, but haven't pulled the trigger yet.

[namasteak]

((( pinkdutchtulips )))

[namasteak]

What would you consider a a reasonable amount of time to get an email response from someone quite high up in a large district? 2 business days?

This is regarding something that could lead to legal action against the district in case that changes your answer.

[macmars45]

namasteak less than 24 hours. They should take potential legal action very seriously.

[namasteak]

Feb 17, 2023 15:14:04 GMT -5 macmars45 said:

namasteak less than 24 hours. They should take potential legal action very seriously.

We are at 24 hours and I was surprised I hadn't heard anything but wanted to check that was a reasonable response.

[fivechickens]

My daughter doesn’t have ASD but she has cerebral palsy (I assume that’s what SN = special needs) so can I check in?

C had surgery Nov 2021 so it’s been a little over a year of recovery and she is doing so well. One thing we are dealing with is her one leg is longer than the other which is causing her knee/leg to turn in so her PT and AFO guy are trying to figure out how to help that. Otherwise, she is flat footed which is great and is getting stronger and stronger.

She wanted to try out for the basketball game but ultimately decided to be an assistant for the team. I am really proud of her for wanting to do all these things. Hopefully she’ll be able to start horseback riding this spring. Academically she has 3.8 gpa so that’s awesome.

[fivechickens]

namasteak I agree with others 24 hours to get back

[pinkdutchtulips]

Feb 17, 2023 13:18:10 GMT -5 wesleycrusher said:

pinkdutchtulips I am sorry. I can relate in the impact that my child's difficulties have had on my own life- it's just all-encompassing and I ruminate on things constantly at home, at work, with friends. I have thought about seeking therapy for myself to help navigate it all, but haven't pulled the trigger yet.

I do have a therapist for myself and it takes the edge off.

[regencygirl]

namasteak, public school teacher here, guidance in my district if no longer than 24 hours.

DS2 (9M), on the spectrum, was in a Catholic school up until 3 weeks ago, when we were asked to remove him because they could no longer accommodate his behaviors. They kicked him out on a Wednesday night, we got him enrolled in our local public and the IEP process started by the next Monday. We were lucky that the school psych was there that Monday and had no other evaluations to complete at that school so the testing even started right away.

We had a few issues related to the entire process. He came home after his first day, went up to change and then cried for 45 minutes about how his life was over, he hated the new school and he wanted to go back to the old. Then the next morning he melted down in class, and hit a teacher when she tried to help him calm down. Had to go mama bear on the principal when she started off the phone call with "this is a suspendable offense". After a long, but productive conversation with the Special Education manager, teacher, counselor and special education teacher - I was happy. Things were going great up until yesterday when DS melted down at the end of the day and smacked another student.

We are in family therapy, and DS goes to a music therapy social skills group. We're in the process of getting speech set up since it doesn't seem like he'll be getting it at his new school until the IEP takes effect sometime in March / April. I'm hoping for speech and OT as well as having him evaluated for a one-to-one behavioral therapy aide. I'm just so so tired all the time of people looking at my bright funny 9 year old like a monster because he sometimes hits when he melts down. And no one can give us good strategies to help him stop.

There is other drama related to a soccer team he's on and I'm coaching relate to behavior and I decided to fold the team at the end of the year- but I am tired of constantly waiting for him to get red carded because he smacked a kid on the field, which he's done at least once. Some of the parents are acting like I'm killing the and their kids because I just don't have it in me to keep this team going anymore. And I know at least one parent has negative feelings about my son. I'm over it all and can't wait for this year to be over.

[jg183]

wesleycrusher, I do have a therapist for myself. We talk a lot about how when the family (mostly my DS) is stable, I am doing better, when he is in crisis I am more anxious

[macmars45]

regencygirl (hugs)
Whenever I tell people DS(6) is autisic they say at least he talks as if that's the end all be all. They don't know he gets violent at home on a dime and I am sometimes afraid of my amazing creative kid. We have so many chunks taken out of our walls and doors due to his violent behaviors. I get hit, kicked, and slapped almost daily. We get no helpful strategies either. At least he talks though. Am I right? /s

[mysteriouswife]

Feb 17, 2023 19:50:45 GMT -5 macmars45 said:

regencygirl (hugs)
Whenever I tell people DS(6) is autisic they say at least he talks as if that's the end all be all. They don't know he gets violent at home on a dime and I am sometimes am afraid of my amazing creative kid. We have so many chunks taken out of our walls and doors due to his violent behaviors. I get hit, kicked, and slapped almost daily. We get no helpful strategies either. At least he talks though. Am I right? /s

This is how I feel about the term “functioning.” What does that even mean?

[vamoose]

My son has adhd and anxiety and an educational autism diagnosis with his behavioral health pediatrician currently considering a medical autism diagnosis.

He started middle school this year and it has been a total disaster. He has an IEP and today we had a nearly 2 hour long IEP meeting where we decided to move him from a general education setting to a special education setting for language arts, social studies and math and to give him a push in aid for science and explore accommodations for band and pe. I think it is the right move for him. He has been getting zero work done at school. We are also as of today switching his stimulant medication. I feel emotionally hung over from the whole thing. His school has been great, but I hate that he couldn’t be successful in general Ed despite significant accommodations and truly lovely teachers.

[macmars45]

Feb 17, 2023 20:07:25 GMT -5 mysteriouswife said:

Feb 17, 2023 19:50:45 GMT -5 macmars45 said:

regencygirl (hugs)
Whenever I tell people DS(6) is autistic they say at least he talks as if that's the end all be all. They don't know he gets violent at home on a dime and I am sometimes afraid of my amazing creative kid. We have so many chunks taken out of our walls and doors due to his violent behaviors. I get hit, kicked, and slapped almost daily. We get no helpful strategies either. At least he talks though. Am I right? /s

This is how I feel about the term “functioning.” What does that even mean?

I have this amazing book that's written from autistic kids' views. When people think the kids are 'high functioning' it means that they think they should be that way all the time. So people can react poorly to the kids having a challenging day or a challenging part of the day. Also it makes the kids feel like it's a bad thing to be autistic when people say "well at least you're high functioning".

[namasteak]

I wish they would have names for the different types of Autism as I think it would help people better understand. High functioning/low function or mild/moderate/severe don't work =( Someone said above that sometimes people on the spectrum function at different levels and I totally agree. I can tell when we are approaching autistic burnout with both DH and DS1 because daily tasks and emotional regulation are much harder for them.

[mysteriouswife]

Feb 17, 2023 20:47:57 GMT -5 macmars45 said:

Feb 17, 2023 20:07:25 GMT -5 mysteriouswife said:

This is how I feel about the term “functioning.” What does that even mean?

I have this amazing book that's written from autistic kids' views. When people think the kids are 'high functioning' it means that they think they should be that way all the time. So people can react poorly to the kids having a challenging day or a challenging part of the day. Also it makes the kids feel like it's a bad thing to be autistic when people say "well at least you're high functioning".

Sorry I was being rhetorical. I just hate the term

Can you share the title?

[macmars45]

Feb 17, 2023 22:41:32 GMT -5 mysteriouswife said:

Feb 17, 2023 20:47:57 GMT -5 macmars45 said:

I have this amazing book that's written from autistic kids' views. When people think the kids are 'high functioning' it means that they think they should be that way all the time. So people can react poorly to the kids having a challenging day or a challenging part of the day. Also it makes the kids feel like it's a bad thing to be autistic when people say "well at least you're high functioning".

Sorry I was being rhetorical. I just hate the term

Can you share the title?

I wasn't explaining functioning to you. Just commenting on how autistic kids feel about being labeled as high/low functioning. I hate the term as well.

The Neurodivergents Autism Real experiences of autistic children by I.M. Orkwerd. It's 4 books in one each with their own focus (relationships, communication, sensory processing & comfort & care). The author is neurodivergent herself. The book is aimed at 4-7 year olds (my guess).

[raleighnc]

Yesterday DD1 came home in the beginning of a panic attack over a writing assignment, and she agreed to take a booster dose of methylphenidate and a dose of propananol that she usually takes before dentist appointments. She managed to work through the assignment with a minimal amount of yelling at me and no tears, which has never happened before. Usually it's six hours of crying and yelling while struggling to do the assignment, so it was a genuine miracle of modern medicine.

And just in case anyone thought that DD2 doesn't need her ADHD med, we had our own double blind study this week. She forgot to take just that one capsule on Monday evening (it's a delayed release med) and Tuesday was so awful. I was so relieved when we realized it was just the missing medicine.

[dcrunnergirl52]

Feb 17, 2023 17:03:42 GMT -5 jg183 said:

wesleycrusher , I do have a therapist for myself. We talk a lot about how when the family (mostly my DS) is stable, I am doing better, when he is in crisis I am more anxious

Same for me. When DS2 (ODD and anxiety) is in crisis, especially when he and DH are butting heads b/c of it, I am an anxious mess. It's very triggering due to past issues when I was a kid. We talk a lot about it in therapy, and it's helping me to at least cope better so I am in a better position to help DS2 (along with just doing the regular mom stuff for DD, DS1, and DS3).