Special Needs check in

[waverly]

If you feel comfortable sharing...

1. What is your diagnoses and/ or spouse's?

2. Child's diagnoses?

3. What accommodations are you using at school?

4. What therapies are you using?

5. General special needs chat/ concerns/ etc. 

[waverly]

1. I recently discovered that being "gifted" is considered nuerodivergent. I didn't realize this before. DH and I were both in the gifted program, and I believe they did an IQ test, but my mom would not tell me what it was. We don't have gifted programs in our schools, but based on test scores, I am thinking my kids are it also. Gifted can also mean a wide range of abilities, so I could be very average in lets say science, but reading 6 grades above my level. I definitely have something going on sensory wise, and so does DS who inherited that trait from me. We both had executive function issues, but mine was better in middle school than his is. My EF is excellent now, so I definitely think it is an age/ trainable thing. Also, some sources say EF comes onboard later for gifted because the brain pruning happens at an older age.

2. Mild/ moderate hearing loss, sensory processing, executive function delays, 3/4 heart valve/ valve disease.

3. IEP for everything but sensory processing. He has mostly outgrown most of the SPD and is probably very similar to me at this stage. A little sensitive to temperatures/labels/crowds/ noise but trainable and able to handle it.

4. Support at school, OT at school, tutor who also works with EF.

5. Even I, with very similar traits as DS, ping that something is a little off about him. But in a lot of ways he is doing so so well. I wonder when that little voice in my head shuts up about it. Most likely it is hanging on because of the trauma from all the medical stuff from pregnancy until about age 8. So I just feel like I need to solve for something, but because he is doing well, I don't actually think I need to do anything.

The next logical step would be a full evaluation, but considering his heart check ups cost $1500 every 2 years, I am not sure how much the cost benefit would be. I am sure if would answer some questions. But I also think since he is doing so well, that it is more of a want than a need. If he were doing poorly, I would line it up right now.

DD then would also be nuerdiverse, but not other issues. One thing she needs to continue to work on is anger management.

[mommyatty]

Feb 21, 2024 15:18:38 GMT -5 waverly said:

If you feel comfortable sharing...

1. What is your diagnoses and/ or spouse's?

2. Child's diagnoses?

3. What accommodations are you using at school?

4. What therapies are you using?

5. General special needs chat/ concerns/ etc. 

1. I have generalized anxiety disorder and a high IQ, which are both neurodivergences. We both think DH has undiagnosed ADHD and I think possibly mild ASD.
2. ASD, ADHD, every kind of diagnosable anxiety, generalized depression, and dysgraphia.
3. He needs talk to type but hates it because he feels like it never understands him. His writing is absolutely terrible so he mostly types on an iPad. He needs to leave class often because he is anxious and overwhelmed. He also needs to be prompted to start doing his work because otherwise he will just sit there. (Which may be teacher dependent.)
4. He does CBT but that’s it. I would like him to go back to OT but the benefits seemed minimal.
5. DS had a major meltdown at school. It was his second one. It was really bad. Now, an important point is he literally has only had two meltdowns. Both at that school. Both after he TOLD THEM he was having a mental crisis and needed help. Both times he was brushed off and went into full-blown fight or flight. He never had anything like this happen at his old school. He never had a single behavior problem there and he was keeping up academically. So I want to send him back there, especially now that they’ve added a counselor and a learning coordinator whose job it is to HELP THEM with kids with learning differences. But I also worry because he is different. He has the arm/hand flapping thing and doesn’t look at people a lot of the time. (That’s more social anxiety than ASD though honestly.) So I’m struggling. And sad. And overwhelmed. And I’ve cried so many times the last two days that my eyes feel permanently gritty and my head feels like it’s stuffed with cotton balls. It sucks.

[mae0111]

If you feel comfortable sharing...

1. What is your diagnoses and/ or spouse's?
High IQ, ADHD, depression. Anxiety has not been diagnosed I don’t think? But I’d be surprised if it wasn’t on there somewhere. DH has no diagnoses, and I don’t think one was missed.

2. Child's diagnoses?
DD1 is considered 2E. ADHD and fell just short of an NVLD diagnosis. Dd2 has ADHD and anxiety. The poor kid is at an 11 at all times.

3. What accommodations are you using at school?
While neither officially has an IEP, they have access to a center for learning differences. The have an official session once a week during study hall, but they can go whenever. They are given help with organization, academic support that’s personalized for them, help with things like “active reading”. Dd2 also gets a wobble seat, use of fidgets, etc.

4. What therapies are you using?
Both kids are on Vyvanse and are in therapy weekly. I’m in therapy but I tried several different medications and nothing worked without significant side effects. I’m sure I drive everyone around me crazy.

5. General special needs chat/ concerns/ etc.
DD1’s differences make it so hard to navigate the middle school world. My heart breaks for her. But she is soooo stubborn and refuses all help.

[mae0111]

Can I ask a question about “special needs”

If you received a publication with two unrelated articles - one that used the word “stupid” (like, called something (not someone) stupid in the title)and one that was focused on adult children with special needs, would you find it offensive?

[traveltheworld]

1. Gifted and anxiety.

2. DS - profoundly gifted, mild ASD and anxiety. Dd - highly gifted. She struggles socially but we can't figure out what it is.

3. DS - Accomodations for his lack of executive function and emotional regulation. Individualized programming (which we pay for separately) for math. No accomodations for DD - she just gets extra work.

4. Nothing right now. DS had lots of ABA for ASD, then quiet a bit of social skills class. DD saw a therapist for selective mutism for about 2 years.

5. I hate it when people assume that it's a good thing that my kids are smart. This may not be a popular opinion - but if your kids are a few standard deviations below the norm, people are sympathetic and you get a lot of support from schools etc., but when it's the other way, you don't get much support at all. And I feel like I can't even talk about it with most people as people think you are just bragging; it's a very lonely road. DS is finally doing well, but now I'm worried about DD. She comes off as very lovely, is friendly and kind, but makes no real connection with other kids. We can't figure out why.

[dglvrk2]

mae0111, without knowing the exact context in which it was used, I cannot say if I'd find the word "stupid" offensive.

I have an adult nephew with special needs. His IQ is lowish and he has ASD. I'm usually VERY sensitive to the use of the word "stupid" because of him. However, it's more me training my kids and husband never to say it....

I imagine if the context is no worse than you described, I wouldn't be offended, but would question the validity of said article because of the word choice.

[mae0111]

traveltheworld - I agree with gifted kids not getting support. DD1 was not given an IEP because she was “fine” in class. No behavioral issues and her grades were excellent (because the work was too easy - now she’s in a school that challenges her and she’s starting to struggle a little). Same with DD2 - she really needed one and the school was “too busy”. Now they’re in a different private school and get a lot of help/accommodation without an official IEP. They also have some work that is individualized and self-paced. DD1 games the system to keep it easy. Dd2 pushes herself and it’s getting harder. I wish every school could do some of that…

dglvrk2 - it was a short mailing with 2 articles that goes out each week. One is more of a personal article, in which the author called the hype around the Super Bowl “stupid”. Then there was a second article about planning to help adult children with special needs, from a financial perspective.

[twinmomma]

Feb 21, 2024 15:18:38 GMT -5 waverly said:

If you feel comfortable sharing...

1. What is your diagnoses and/ or spouse's?

2. Child's diagnoses?

3. What accommodations are you using at school?

4. What therapies are you using?

5. General special needs chat/ concerns/ etc. 

1. Anxiety, ADHD, gifted for me
2. DD2 is diagnosed ADHD combined type, OCD/Anxiety, and highly gifted. I think she may be on the Autism spectrum as well, but the school wouldn't agree to test her because she's "fine" at school and private testing is so expensive and I already had to do it once for the ADHD diagnosis. Oddly enough, her identical twin exhibits no signs of any of those things. (I also think that DS has pretty severe anxiety and some sensory stuff going on, but it is not in my sphere of control to get him evaluated or work on supports for him so I just mention it to DH when it makes sense and let it be)
3. She has a 504 plan to help with the ADHD that's pretty basic now that she's in the middle school. Allowed to test in a separate space, preferential seating if needed, things like that. We also have it written that if she understands a concept she doesn't have to keep doing repetitive work over and over. That was an issue in elementary school when she'd have to do a million math problems even though she never got a single one wrong. It was brutal for everyone involved to keep her on task to complete it just for the sake of completing it when it was clear she understood the material. 
4. She sees a therapist once a week right now. We've finally found someone who is a good fit for her. When she was in the thick of OCD issues the therapist we used was terrible for her and didn't help at all. We had a lot of great experience with her going to private OT once a week to work on getting her energy out and getting sensory stimulation, but it was really expensive and the schedule meant she missed school for every appointment, so eventually we stopped that. She didn't qualify for it from school. 
5. I worry about DD2 more now than ever. I sued to say that she was a kid who had "never met a stranger" and was so friendly and outgoing. But ever since moving up to the giant middle school, she barely talks to anyone and has no interest in making any new friends. Her quirkiness seems to be ramping up more too, which is some of the OCD behaviors and what I think is ASD. My sister and my mom both have extensive experience in special ed and totally see the ASD piece, but it's so tough to get an actual diagnosis. And then the question becomes, what does that diagnosis actually change for her? She's so high functioning I don't think she'd qualify for any real services at school. I just think it would help her and us to have the name for what's going on so we can all work on it at home. 

[waverly]

mae0111- an article about Super Bowl coverage being stupid sounds unprofessional to me and outside the scope / intent of the newsletter. The second article might be relevant if it were a financial services firm advising on setting up trusts and other financial planning ideas.

[waverly]

twinmomma, this is how I feel about DS’s evaluation. I already know he is gifted, has executive function delays and sensory processing. We aren’t planning to medicate because he is doing great so I am not sure what additional evaluations would do. I love knowledge and answers, so I would totally do it if it were free but I have a feeling it’s going to be very pricey. Plus now I know that gifted kids tend to have EF delays I feel like it is related to that more than ADHD. The school will do their evaluation next year so still waiting on that (3 year cycle for IEP testing).

[mae0111]

I have a couple more questions to add to waverly 's list... or I could start another thread...

If you have a diagnosis, when were you diagnosed?

Did you have any accommodations when you were a kid?

[waverly]

I was diagnosed as gifted in 1st grade when the school district did the testing. I did not have pull outs for gifted until 5th and 6th grade. That was my only accommodation.   I was one of the youngest in the class, and got all A's until high school with more challenging classes. I took the highest level of math and english offered at the school with the exception of deciding not to take Calc.

The rest is anectdotal such as I forgot things a lot, I daydreamed a lot (EF). I chewed on barbie shoes, I didn't wear jeans until 4th grade (SPD).

EF skills seems to come onboard maybe in middle school which makes sense since with some they come onboard around age 9/10 but gifted brains are delayed. No accommodations were needed.  DS's EF is not on board yet despite accommodations and a EF tutor, so I am hoping by high school and hope the answer is not that they never come on board.  

I forgot to mention I also fit into the highly sensistive person category, but that seems to be common with gifted and sensory issues.

[twinmomma]

I was kind of diagnosed as a kid, but not really. My mom used to be the one who did the testing for our school district and she definitely thought I had ADHD and did the testing on me. But we never brought it up to the school or the doctor or anything because it was super informal for my mom to be diagnosing me. I was also a stellar student, all As, pulled out for advanced work in elementary and all honors/AP classes in high school.

Anxiety was diagnosed in college and I've seen therapists off and on for that. I really committed to working on it and started medication for it after my divorce and then during covid when the world was too much to handle.

As an adult, just a couple years ago, I decided to pursue official private testing for myself to confirm the ADHD diagnosis, especially after DD2 got hers. I wanted to figure out how my ADHD and anxiety fit together and see if there was a better medication plan for me than just anxiety meds. I went through the whole process and the results came back as basically borderline ADHD because my coping skills are good enough that they couldn't definitively flag me as ADHD, but it was pretty obvious I have it, so I'm kind of diagnosed but not really. It was really frustrating to feel like I had less answers and information after the test than before it, especially because I had to pay out of pocket for all of it.

[waverly]

twinmomma, this is how DS is. I would definitely describe him as "borderline" for a lot of things. It's great that it isn't severe, but it also means there isn't really any other assistance, clear answers, anything. The school is giving him accommodations, and I don't need to fight them on it. He doesn't need medication, so we are just tacking it from the EF angle. I just feel like in my mind it pings that something is off and then I go in a circle and come back to this same conclusion that he is borderline and that is why my mind is pinging me. I have his IEP meeting tomorrow, so we shall see what they say.

[mae0111]

I was classified as gifted in elementary school as well. I was pulled out of class starting in 4th grade - once a week, I went to the local high school for separate classes - advanced projects, more advanced reading and analysis, and exposure to different subjects and workloads. In middle school I was placed in all advanced classes. I then switched from public to private high school, where I took advanced/AP classes as long as they fit into my schedule. I was a year ahead of everyone in French, which kind of threw a wrench in the works as far as scheduling went. But it meant that when I was a senior, I was able to do an independent study in French. So that was neat.

But no ADHD testing or diagnosis - I was "lazy", I just needed to "buckle down" and "focus". This led to a lot of anxiety around my grades. It just seemed like I had to work so much harder to stay on task.

I graduated high school in the early-mid 90's, college in the later 90's, and I don't know ANYONE that had an ADHD diagnosis. I had 2 good friends with depression, but no one found out until it got so bad that they had to leave school. I was finally diagnosed a few years ago at age 45 or 46. It explained a LOT.

[waverly]

mae0111, I'm only a few years younger than you, but I definitely knew some that had ADHD, and some that were using the disabililty office at college. They were able to register sooner etc.

[mae0111]

waverly, my sister is 5 years younger than me, and when she hit college, Adderall was everywhere for recreational use. Kids were open about their diagnoses and were selling the pills. Maybe it was happening when I was in college too, and I just didn't know it? But it seemed to me that there was a big shift in a short time.

[traveltheworld]

I got identified as gidted in kindergarten. Went to a gifted school and hated it. Never felt I fit in there. Tried regular school for middle school, hated that too. Finally found my "tribe" in a gidted program in a very large public school.

My anxiety was not bad until after I had DS and he had a long list of health issues. It got so bad that I couldn't get out of bed and had to take a leave from work. Went to therapy for a few years and am generally ok now.

[dglvrk2]

…

dglvrk2 - it was a short mailing with 2 articles that goes out each week. One is more of a personal article, in which the author called the hype around the Super Bowl “stupid”. Then there was a second article about planning to help adult children with special needs, from a financial perspective. [/quote]



In that case, I would not be offended. It still wouldn't be my choice of words and I would certainly suggest other words if I was there editor, but I get where the person is coming from.

[campermom]

1. What is your diagnoses and/ or spouse's? I used to think I have GAD but my therapist and I think it’s actually more adjustment disorder but you’re not really supposed to keep that dx for more than 6 months. A touch of PTSD. ExH is not diagnosed but two marriage therapists have told me they think it’s a personality disorder.

2. Child's diagnoses? DMDD, ADHD combined

3. What accommodations are you using at school?
Testing in a separate location, frequent breaks. Locker nearest to the classroom door, downtime after high energy events, a Behavior Intervention Plan (BIP). There’s probably more I’m forgetting. Child gets special Ed service for behavior/social emotional throughout the day and speech artic. Counseling on the IEP.

4. What therapies are you using? He has had outpatient therapy, child centered play therapy, and sees a pediatric psychiatrist regularly. His counseling is now delivered in school through the IEP and I think that’s been the most effective. At home before any of this I taught Zones of Regulation; Size of the Problem, expected/unexpected behaviors.

5. General special needs chat/ concerns/ etc.
He just shifted from a 504 to an IEP.
My concerns are with meds-Dad has been forced to administer them, lately he hasn’t been giving the stimulant. I’m not battling that-even though it’s a violation of the court order. As long as he continues to get the mood stabilizer, otherwise that is an enormous safety concern. Steven’s Johnson syndrome is a risk for inconsistent dosage and he knows this. but he is now telling him his meds don’t do anything and my child is now struggling with mixed messages. “Persuading any child out of any medical treatment plan” is now specifically on the court order, he’s violating it, but I’m balancing going in debt to take him for contempt versus accepting the fact that he’s getting the mood stabilizer at least. He took me for shared legal custody (stated he wanted “the power to veto mental health”) and spent all this money and forced me to spend 5 figures so he could share it, and he’s already skipping the virtual psychiatric appointments but he’s arguing the tx plan.

Overall my child is doing “ok” but still has some behaviors at school that bring me so much shame. He kicked a child yesterday while he was upset about math, bc the child was on the floor in front of his desk that he was shoving around. He’s too old for this. I haven’t been able to discuss it w him bc he’s on a visitation. It was the first referral he’s had in months but still very upsetting.

I once broke down to my child’s psychiatrist and asked what I can do to prevent a personality disorder. She said oh like narcissism? You’re treating his ADHD which will improve his overall functioning in life and especially academics. He needs at least one strong safe secure attachment to an adult and you’re it. Another time I asked her if she thinks I’m enmeshed and she said No. I see you as attuned, and attunement is so important with a dysregulated child. Overall I’m so happy I have his village/treatment team bc he’d be in a very different place emotionally and behaviorally.

[waverly]

Update: DS’s IEP meeting went really well. Even if they go well they are always kind of exhausting.