Update on S1 (oh yeah and the rest of us)

Parent Cafe
1

This forum has been a game changer for me. I have few friends with older children who can provide perspective and I lost my mother years ago. So HI and THANKS in advance.

Sorry. Long.

S1, the classic Aspie was kicked out of school AGAIN (4th school). The official reason was “utilizing too many resources” aka needed too much support to get through his day. I’ll come back to this point. He also was accepted into the Davidson Institute’s Young Scholars program owing to his completely off the charts IQ. (Someone on this forum clued me into that forum which I’d never heard of - so helpful!! ) The school told us that he was not invited back next year in October so we had time to apply out without it being a scramble.

No one wanted this kid. Rejections, rejections, rejections.

Through connections we managed to get S1 an interview at a newish private special needs school. The school ultimately accepted S1 but only if he skipped a grade as they had no openings in his grade. So S1 will go from 4th → 6th in the fall. The new school is across the street from where we live (the old school was 90 minutes on a bus each way / 3h daily commute). The population of SN at the new school is the broadest we’ve ever encountered: spectrum, ADHD, Downs, mobility, medically fragile kids, etc. It was this or home school. We choose school-school because we think S1 needs to learn to manage himself in a structured environment and develop autonomy. He would rather be homeschooled but is motivated to try this school. Is this the “right” school for him? I am under no delusions it is. But he has to learn to DEAL with life. I’m sure there is a gentler, more kind way to say this. And I want to emphasize that S1 is not a snot-nosed little punk. Far from it. He just externalizes EVERYTHING he thinks. He WILL tell the teacher that a lesson is “whitewashing history” or insist a teacher is confusing a book’s “author” and “narrator,” or call a worksheet “babyish” in the classroom. I feel like homeschooling would play to his strengths, but at the expense of basic life and social skills.

In my last post I pondered planning to step back in five or so years. But this last kick-out sent me over the edge. Whose child is kicked out of four schools by age 10? I felt he was on a downward spiral. [The good: He reads 10-12 books a week, most age-appropriate, some encyclopedic or technical. He is highly articulate (though his speech is halting), Wakes up and gets lost in books (never played a video game in his life, doesn’t like apps etc). We go to the beach, he asks if we can PLEASE GO TO A MUSEUM. Is passionate about Earth justice and wants to become an environmental engineer. The not-good. He does not “roll” with school - hides books in his desk and ignores the teacher, argues with authority, has no filter. Is happy to sit in the hallway and read for 6+ hours of school per day (this happened a lot over the years). More problematically, he is also extremely inattentive. I literally have to sit next to him and redirect him to do work (e.g. writing, math). His skills are there, and the motivation is there. He WANTS to do math, but he just cannot work autonomously. He works for a minute and then spaces out, and will start talking about how fungi are genetically more closely related to animals than plants. He is highly distracted my internal thoughts. He is now 11. (On the other hand My 9yo is completely autonomous. Simply sits down and cranks through whatever he needs to do, even if he doesn’t like it – so he can go play soccer.)]

I spent the last year in therapy. I worked through feeling that S1, like a black hole, just warped all of my life plans and our day-to-day family life. I worked through being angry that H has an unlimited professional horizon while AT BEST I could barely manage full time work (and at that - more ‘job’ than ‘career’). Work loved what I offered, I always brought my A-game – and I have an amazing A-game! – but I would go home and fall apart, mentally and physically. And I had this alcoholic mother who drank herself to death, and I needed to help my father figure out life’s next chapter (while internally seething that he did not take better care of her). In a nutshell - I followed all the rules and did what I was supposed to do. I got the PhD, I built a career, I made sure we started our family while we were (relatively) young, I was a nurturing working mother, I was a super supportive spouse, a dutiful daughter, etc., etc. So… &^%%#@!!!

My therapist helped me step back and take in the larger perspective. S1 has strengths. S2 is a great kid. H has strengths. I have options. It takes very little looking around to see how unfair - cruel - life can be. I learned it’s ok to lament not being able to live the life I planned out at age 25, but not to let that block me from building the life I have ~20 years on. Honor the natural feelings of grief – then move on, don’t get stuck.

So I quit working for now. It’s very 1950s - I do all kid care, all meals, shopping, laundry cleaning, etc. H comes and goes (SO much travel). His career climbs new heights. Our apartment still has too many books, even after I donated half of them, but at least they are meticulously organized, I lost weight, am eating MUCH healthier, go to the gym, skin looks better than it has in years. H and I actually snuggle and watch movies sometimes. We are kinder to one another. Our relationship is rock solid.

So much uncertainty. I don’t know what will happen in the fall. Will S1 get kicked out AGAIN? Or will it be different this time (with me so close by and not working and far less stressed)? Am I doing right by S1? (S2 is so EASY. I will say a side-bonus of our 1950s arrangement is that S2 and I get more time together.) Will I regret quitting work? (I applied for two jobs (both remote PT) and got one in-person interview. Went well. They called back an asked for my requirements which I gave them. It was good to put on a nice shirt and practice interviewing, even if I don’t get the gig.). How can I be a better parent to S1? AM I DOING THIS RIGHT?

Thought, comments, criticisms, etc. welcome.

2

Let’s start with YOU. Welcome back and I’m welcoming you back with a bit of a new you - you have accomplished some of your goals - better health, weight loss, better relationship with H, etc. Don’t discount all this. It’s very important and to oursiders - like us - HUGE growth in a positive direction.

Your S1 does have so many strengths! So smart, loves books, doesn’t mind managing his time at home (correct?). The things that are not his strengths are results of his diagnosed disabilities - not a result of you, but of nature for the most part.

While I know he has to get along with the world socially to some degree - and manage his filter…I almost want to say that school is just not everything in life - even as a kid. I’m talking about school structure. Some kids can’t fit into that box no matter how you fold em! I hope we are all here in 10-12 years when he is a young adult and formal school obligations may be over and he has found a niche. A niche he fits in, not a niche he HAS to fit in.

I’d like to see what others say, but it’s good to hear from you, I love there is some snuggling on the couch, and I also sort of love the fact that when you go to a beach S1 says “PLEASE MAY I GO TO A MUSEUM!” (see, he has manners!!!) :slight_smile:

Also glad to hear S2 is carrying on and hopefully thriving and enjoying the benefits of you feeling good about your health and you and your H’s relationship thriving.

3

Is this new school a public school? You do know…public schools cannot kick kids out unless they violate a zero tolerance rule…things like threatening, carrying a gun, that type of stuff. Even with those violations, public schools must accommodate a child with an IEP and figure out what to do, what supports are needed and what to do if something more drastic happens.

Private schools can always ask students to leave…and they could have told you in October that he couldn’t come back a week later.

I’m not sure why you haven’t availed yourself of the services of your public schools. I’m betting that you have hear they have a bad reputation or something. But clearly, they would provide some continuity for your kid…and he hasn’t had that if he switches schools year after year.

I will hope that the new school is able to figure out what makes your kid tick, can develop an appropriate and worthwhile schedule and behavior plan. Your son (from your description) needs structure…and solid and well enforced expectations…clearly articulated and consistently followed.

He needs an understanding team of professionals to help him navigate the educational and social situations he needs to navigate.

I would strongly suggest that you set up a meeting with his case manager at his new school. Discuss your concerns. Tell them you want him to be successful and want to be part of the team to make it so.

4

As I recall OP has run the gamut of school options with public schools finally agreeing they could not cope with him. I am glad OP is doing better and seems like life is calmer for her now. Hope the boy is in serious social skills therapy multiple times per week, as this would be my top priority. At 10, he should be able to begin to draw the connection between his actions and adverse consequences. His intellectual skills will not matter if he offends everyone he encounters, so learning how to get along with others would be my sole focus, with time of the essence.

5

If that is the case…their local education agency is responsible for finding a suitable school for this student.

When was the last time he had a formal neuropsychological evaluation? Did the last school do a behavior intervention plan? Will this school do one?

There are schools for every single child…someplace. With appropriate educational programs. The local education school district is responsible for helping this family…and yes, that might mean a return to the local public school as a first try…because it’s their responsibility to educate kids within or as close to their regular school placement as possible.

Perhaps this family would benefit from working with an advocate. Every state has an advocacy group…look up Educational Advocacy and your state. These advocates are at no charge.

6

OP has a long and painful history of various educational attempts, interventions, advocacy, and legal representation, so I think no stone was left unturned at this point.

7

Yes…but then was then and now is now. Sometimes one has to revisit something…maybe now is that time.

But really hoping this school works out. I do suggest the parents meet with someone at the school to discuss their concerns with someone there…and be clear that they will support what the school suggests. Team!!

8

@Aspieration ,
what grade is he in now? Has he ever enrolled in online courses?
Could you ask if he could enroll in the online classes of the Davidson Academy once he has finished 6th grade?
It caters to the most profoundly gifted students , and though it is related to the Davidson Scholars program, it may be far more suitable for your son.
It may be worth a shot.
http://www.davidsonacademy.unr.edu/
[ Unless you currently live in Nev, or can move there, where he could take classes in person]
I think that sending your son to a school that does NOT have what he needs- a peer group of other highly gifted students AND teachers who know how to teach those kids AND accelerated programs that let students study at their own pace, would be a huge mistake.
Highly gifted students can quickly be bored out of their minds in most schools.
He should NOT be allowed to think he is regarded the same as highly disabeled students.
That said, the correlation between giftedness and learning disabilites goes up the higher the IQ. So it WOULD be a good idea to have him evaluated by a specialist who can run a complete battery of tests, to determine if he has ADD, or processing disorders, for instance, that make it harder for him to concentrate.
@Thumper,
Public schools are not prepared to deal with the most profoundly gifted students.

9

“He does not “roll” with school - hides books in his desk and ignores the teacher, argues with authority, has no filter. Is happy to sit in the hallway and read for 6+ hours of school per day (this happened a lot over the years)”

Seems like the schools are reinforcing his undesirable behavior by giving him what he really wants - time alone to read. No wonder he keeps repeating the behavior due to the “positive” reinforcement.

Don’t think that just because you are forgoing your career now you can’t have one later. My sisters and my sister-in-law all gave up careers to raise children, taking on the traditional 50s housewife role. They have all re-entered the job market and have built successful careers in their late 40s, 50s, 60s.

10

I don’t have much to contribute but want to give you a hug - and tell you that from my perspective (in my 60s now, working full timer after being SAH for 20 years) I don’t regret that I stepped out of work when I did. I place a high value on “calmness” and I think my presence overall supported the rest of the family in a way that I couldn’t have done if I was also working full time and as a side I was able to develop skills in an activity that I wouldn’t have had I been working FT. I don’t have a PhD (masters only) and never had a specific view of what my life would be like except that I knew I wanted it to be sane and I’m generally adaptable. There are always trade offs, and you can change your mind/plan as situations change. Your plan is a sound one. Best of luck to you and thanks for updating!

11

It sounds to me like you’re making the right choices for this time in your life. Good luck with the new school. I’m no expert, but the rejection must be hard for both of you.

12

More time together, less commuting, sounds good!
Do you have any community resources that help with social skills? This is an example. Maybe a group can be started there.

http://csaac.org/
“Provides information and referral services as well as residential, vocational, and community services for adolescents and adults. Services include assessment, pre-employment training, job referral and development, on the job training and supported employment”

13

Hopefully the calmer environment and new school will work out, and that he has overcome some of the most troubling behavioral issues of the past. I remember you declined any medication on his behalf, despite suggestions from medical professionals-some parents revisit that issue as students age. While I would devote every moment to trying to make this placement work, it would not be premature to investigate options just in case it does not, given the history. You mentioned why homeschool may not be appropriate; do I recall correctly that therapeutic boarding school was suggested by doctors earlier?

14

@menloparkmom

If the public schools can’t provide an appropriate education for this kid IN their schools…then the public school district IS responsible for finding an appropriate educational placement for the student. And yes, I do know that students like this who are both gifted and have other disability as well are hard to figure out and manage.

I still say…find an advocate…one experienced with this student profile.

15

Thanks very much for the replies.

S1 has had four full neuropsychological evaluations (age 4, 6, 8 and 10). Dx’ed with HFA, anxiety, ADHD and other isms that have come and gone over the years (at one point he had a reading disability, two years later he reading comprehension was at the level of an 18yo+). He also has something serious going on with motor coordination – his walk has no rhythm, he can barely catch a large, slow-pitched ball, forget throwing it straight and while ‘we got there’ with writing, it took YEARS of giant backwards letters and lots of scribbling things out. He takes melatonin to calm down at night (in quiet darkness he gets super relaxed and CHATTY). That’s it. He has a CBT therapist, a psychiatrist, has completed several social skills classes and attended a therapeutic special needs summer camp last year staffed by psychology PhDs. He told the program director that their positive behavior reinforcement system was ‘a joke.’ But he got on that bus every day. He made me send him in with ‘work’ (math workbooks, writing exercises etc.) so it would not be a ‘complete waste of time.’ He has been in some form of therapy or another (ABA, CBT, etc) since age 4.

He was deferred from public school at age 8, he cannot attend public. We have both a DOE case worker (who placed him in the school that most recently kicked him out) and a privately retained SN edu lawyer advising us about his rights and our options. He’s done CTY online (and two days of onsite before he was shown the door) and it worked… OK. Not much interaction with other kids. Now that he is in Davidson, we are also working with one of their educational specialist. She is advising us to try a single classes at Davidson online and see if it is a good fit. He is excited to take a class about the rise and fall of empires - so that’s a no-brainer. He loves history and especially the underpinning economics of history. We just have to wait for registration to open. We tried to get him into a school here in NYC that is for so-called “2e” or twice-exceptional students but they rejected him without interview. His rap sheet scares most schools away – and I get it.

The new school claims that they will flexibly place him with students working at his level. NOW will that work out in practice? No idea. We are going to try. We will absolutely partner. I will sit on a chair outside the principals office if I have to. I will continue to supplement his education at home. I am hoping beyond hope that this school’s emphasis on inclusion and diversity (all meanings including neurodiversity) will speak to his inner social justice warrior. He marched with other kids at the NYC Children’s Climate Strike this past spring. His handmade sign said “CARBON PRICING NOW” and had a molecule of CO2 with a red slash. I asked him what carbon pricing was and he explained that governments need to stop letting private industry externalize carbon pollution, by building the price of a product’s total lifecycle, not just cost of manufacture and sales, and there were two ways to do it and then something about cap and trade and I lost track… But I digress…

I guess my attitude is… MAYBE he will be some kind of environmental engineer but as his mother, I have to face the fact that maybe he will not be able to manage anything remotely like a real job, let alone a high-pressure job. Maybe he will need to work for a local Park Service or something, as a disabled adult. Or volunteer with an environmental rights organization. And if so, he needs to be able to deal with people and their personalities – and rules, and schedules, and tasks etc. I have read too many threads on SN mommy chat boards written by mothers with unemployed genius children still living at home as adults. They all say the same thing, “I wish I’d emphasized basic life skills more strongly during childhood.” You can’t keep a job if you can’t manage yourself with other people. Right now S1 has incredible motivation, and that beautiful intellectual authenticity I’ve seen only rarely in 20+ years working with brilliant scientists at elite institutions. But there are lagging skills.

I think he experiences incredibly intense emotions and this emotional intensity is both the core of WHO HE IS and the main reason WHY HE FAILS. It made the playground a war zone for years. You could call it impaired emotional regulation. Again, as his mother it’s just… who he is. As he has matured and received therapies (especially CBT) he’s learned to:
a) anticipate triggers
b) recognize feeling triggered
c) self-calm eg deep breaths or arm squeezes
d) recognize when self-calming isn’t working and ask for help.

Step D here requires a trusted adult – we had that in year 1 but not year 2 of his previous school. My first order of business this fall will be to help S1 establish a relationship with a trusted adult. Then, as long as the academics are leveled correctly (not too easy, not too hard), we work on friendships with new classmates and build up those social skills.

THANKS THANKS THANKS for the feedback and suggestions.

16

Best of luck to you, OP. Fingers crossed that it all works out, you are trying so hard. Sending hugs.

17

Wishing you and your son all the best. He sounds like an amazing young man with a fantastic mother!

18

I have no specific advice, but lots of hugs to you. It sounds like you are doing everything you should be doing. We are only as happy as our least happy child.

19

No advice, but you sound like an amazing person and Mom.

20

I second the comment about revisiting the medication issue. What if it really makes a difference? Going off the meds if they don’t work is always an option. Has S1 ever expressed an interest in this?