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

Parent Cafe
41

I’m glad things work out for the many, many parents who sing the praises and preach to me the benefits of using medication as part of an approach to address their children’s challenges. Truly each child, family, and circumstance is unique. What worked for a particular child in a particular family, given a particular situation is unique. Each body and mind interacts with psychoactive medication individually. And while clinical trials tell us generalizations can be made, even an individual’s reaction to medication changes over time, owing to everything from growth and development to homeostatic regulation of the drug’s targets (aka tolerance). The brain is supremely complex, unique, and, in a child, rapidly developing.

I’m keeping an open mind. S1 has a relationship with a psychiatrist, and he continues to work on his challenges through therapy. At no point in time has his psychiatrist sounded the alarm that by declining to utilize medication we are making en error in judgement.

What I wanted to emphasize here was the interesting parenting paradox that I face (and that I’m sure is quite common): S1’s strengths are also his challenges.

That burning emotional intensity IS his motivation for his passion: climate change. His live-mindedness, insatiable curiosity and urge to share his interests with others IS an immense internal distraction. His comfort level challenging authority, while VERY PROBLEMATIC FOR TEACHERS AND SCHOOL STAFF IS the core of his inner social justice warrior, and stimulates his interest in studying political power and economics. (Side note: I recently asked him if he would like to live on some kind of eco-commune some day. One of these off-grid, intentional communities. He immediately replied that while “nice” it doesn’t scale. “I want to be the Standard Oil of green energy” was his verbatim reply. Standard Oil was broken up, but he emphasized that “a monopoly” was part of the goal. I still don’t quite get it but nevermind…)

In the “2e” (twice exceptional or gifted with disabilities) universe, some parents strive to address their child’s disability so that the giftedness can shine through, or at least so the disability doesn’t hold them back from a “mainstream” experience, particularly academically. Other parents take the opposite view and insist that their “uniquely wired children” are the change-makers and iconoclasts. In this interpretation, ADHD is not a disability but a gift, allowing the child to make connections others wouldn’t see, and autism is what e.g. gives some scientists their power to hyperfocus on a topic of interest and develop encyclopedia knowledge.

I fall somewhere between these two camps.

While, as I’ve stated, I believe S1’s challenges are also his strengths, I am very mindful that they negatively impact his ability to master basic, age-appropriate life skills. Like presenting challenge to power with a bit more tact and respect and just ‘getting on with’ life’s boring bits. In these and related areas, he needs my guidance and support to grow and learn.

Nothing here is easy.

42

Love reading your news! Thanks for checking in. My only thought is that when you run financial numbers with your husband, you review any life insurance policies that the two of you have. The partnership that works for a breadwinner parent and a stay-at-home parent would be up-ended by the loss of either one of them.

43

Just a bit of reality check. Schools do not expel children easily, particularly special needs schools, and public school systems are extremely reluctant to offer to pay the often $75-100k price tag for private school alternatives. The child was not asked to leave because he lacks tact, talks back to teachers or is too bright and bored in class. All of the above are commonplace in every class in the country, and if schools expelled for that, there would be few students left. You state he has made progress, and that may be so, but not sufficiently to remain even in a special school. I wouldn’t minimize the challenges this kid poses or gloss over them as future strengths, I would address them head on quickly before this troubled child becomes a far more troubled teen.

44

I love the advice to start him on Concerta or a similar medication now before school starts. The idea that his medically-untreated problems will help him be a better environmental engineer, economist, or political scientist doesn´t seem to be make sense given that he has been asked to leave 4 schools. I think about what it must be like for your son to have teachers saying No No, don´t do that and have students getting exasperated about having their learning disrupted again, day after day, and I hope there is a better plan than executive coaching and pep talks from his parents.

45

It’s none of my (ours) business but what is the reasoning stated why your son is being asked to leave now 4 schools.

I am wondering if it has anything to do with your reluctance not to medicate?

I do understand not wanting to stifle any of that creative energy and brightness.

I do know that for my niece with severe ADHD, that medication is her lifesaver. Just like lexapro is a lifesaver for my kid with anxiety.

Maybe it isn’t about anything like that.

46

I am delighted you came back to tell us of all the progress you’ve made. The self-care, the relationship with your dh … all great stuff.

I don’t have any ideas about your ds1 that haven’t already been expressed. I’ve known many 2E kids; none of them has been asked to leave four schools. Like poster above, I’d like to know specific reasons that he’s been asked to leave. That sounds extreme and makes me feel like some level of medication might be needed, though I know that’s not your first choice. Personally, I think 11 is too young to leave that decision to a child. I know that he presents maturely from an intelligence standpoint, but, for me, it’s like reading a book … Yes, you might be able to decode the words and read it, but is that particular book the best choice for you? Kids shouldn’t always make that decision.

Signed,
Person scarred from reading Helter Skelter at 11

47

@Aspieration
As much as you want to support your DS and not stifle his passions, he IS going to have to live in THIS world, not IN some Utopia where his genius is the only factor that others will consider when deciding whether to hire or work with him or not.
I think you may be trying too hard to ignore the fact that 4 [!!] schools that ejected him, and are not trying hard enough to listen to others who HAVE raised gifted twice exceptional children, which is NOT easy. Just going to a shrink is not enough.
An 11 year old child, no matter HOW intelligent he is, does NOT have the judgement to make the right decision whether or not to try medication that may make it easier for him to learn from OTHERS! And if his is NOT able to focus his attention so he can learn from and deal with other, less intelligent people, he WILL be penalized his entire life.
Please open your mind further, and try something that makes you uncomfortable, if only because it may help you son.

48

I’ve worked with these students for my entire career. It has been a learning experience. I have to strongly agree with @menloparkmom and @thumper1. Some of these kids, at this prepubescent age, may need meds along with sensory therapy. The hormonal changes will kick in and you wont know if it’s a hormone thing or an executive function thing but the behaviors can get worse. We are not “experts” in this diagnosis because the physical, and emotional reactions are vastly different from child to child. We educators try everything we can to work with our students.
I’m glad your child is a bright, unique child, and you appear very proud of your child’s accomplishments; who wouldn’t be?
My question to parents is always, What good does all of that wonderful knowledge hold, if he can’t share it? If all he wants to do is avoid others, since he can’t control or filter his remarks and can’t function around people, how will his hiding behind books enhance his life and yours?

Do you want him to drive? To have a part-time job? To have friends? To eventually have relationships with others? To use Lyft/Uber?
I know I sound harsh but this comes from hearing the anguish in parents and listening through tears for years.
I believe we did a great job with our kiddos in our public school district. We had a number of students, at our high school and adult programs, and we taught them in baby steps and they slowly increased their strides. Yes they became upset, and argued with us, and used “colorful” language but we knew it was the disability and not the child.

Yes, we made them take swimming and they fought and cursed us, but after showing them that they could do it, the students relaxed. We had some students go out for teams (tennis, cross, swim) where other students became unexpected peer tutors. I had two varsity tennis players who started as freshman then slowly got to varsity as juniors and seniors! They slept better with 20 hours of workouts per week.
It was always a multi-pronged therapeutic environment with all of the therapies involved, especially including meds. The most successful young adults were the ones who realized that it would take time, baby steps, and encouragement of those steps from the team. Any growth in social skills was something that stuck because the student saw immediate feedback from peers.

49

It takes time to learn to deal with the world at large, and those who have sensory disabilities particularly have problems over and beyond physical and intellectual issues. They often process very differently and progress differently. They are often not “slower”, but different. It makes it very difficult to assess and work with those who just do not follow traditional progressive routes.

Often, they do progress, and do get to the point that they can deal with group situations. But it’s painful and bewildering to them, especially as children when everything is all over the place in terms of sensory processes.

My one kid has super hearing and vision. It took a while to understand his that can be sources of problems. He hears too much. Hurts his ears and head. Distracts him. Bright lights, bright colors , flashing and blinking lights are all painful to him. “Bad” music, certain pitches hurt. He was not able to communicate exactly what was bothering him for a long time , and now that he can, he finds it not to his advantage to do so. That his ability to read people and social/work/ any situation is poor makes it very difficult to try to explain anything. Especially what others cannot see or hear. It’s taken a very long time, with some harrowing years and experiences, but he has learned to deal with this to the point where he is able to keep a high paying job and produce.

But he was all over the map as a kid. Few people, even professionals trained to deal with kids with such issues had a hard time. If I could do it over, I’d slowly introduce him to outside work and maybe not at all at times. In his case, he did learn to deal with it. But not in traditional ways and on HIS timeline, not the schools or mine.

I would have enjoyed him and life a lot more if I had not pushed things as hard as I did. So would have he

50

That’s an interesting perspective. I’m glad it all worked out in the end for you, and I guess this is a bit off topic, but isn’t exposure therapy considered the gold standard for kids with sensory disability? So maybe the pushing you did is what accounted for the positive result?

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Please. ANECDOTES ARE NOT DATA! Aunt Bea says her school did certain things, and some percentage of her students improved. That tells us precisely nothing about whether a different approach would have been better. @Cptofthehouse regrets the approach taken for their (sorry, don’t know gender here) child. The approach taken was painful, but we can’t know if a different approach would have been more or less painful.

Medication’s not magic. It works well for some, makes things worse for others. It has side effects that are sometimes nasty and unpleasant. Doctors may suggest a trial of medications, but they and we know that the medications may or may not make an improvement.

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What we can offer, @cardinal fang, are personal opinions based on our experiences. No one is suggesting it is definitive empirical data, nor is there likely there likely to be any for a case like this. One does not use collegeconfidential as an academic medical research database. No one knows if medication will or will not help this child, but if it were my child, I would leave no stone unturned in an effort to get out of this educational purgatory he is in. Meds help some kids; not others. It may very well be hopeless, but if there was the slightest chance it might help, I personally would try it. All we can offer are suggestions. The current path seems disastrous.

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What I’m seeing is attacks on the OP for not wanting her child to be medicated. If it were me I’d probably give meds a try⁠—indeed when it was me for my child, I did give meds a try⁠—but I can’t be onboard with this bashing of someone for not wanting to go through the hassle for something that’s expensive and have a substantial chance of not working, or of the benefits not being worth the costs/side effects.

It’s not at all obvious to me (the parent of a kid with ADHD and autism) that the current path is more disastrous than the medication path. You can hope that medicating the kid and shoving him into yet another school would work wonders, but it probably wouldn’t. Schools are awful places for kids with autism. I have numerous friends who have adult children with autism, many of whom put their kids in schools. The schools may have been the least bad choices for their kids, maybe, but in no case that I can think of were they particularly pleasant or successful places for the kids, and they didn’t magically produce adults who would fit in in the workplace, I regret to say.

54

Let me put this another way: We’d like to imagine that if the OP sent her son to a school, the school would teach him the kind of soft skills that are needed in adulthood in the workplace and elsewhere. Yeah, well, the high functioning autistic kids I know who were sent to school did not learn those soft skills, which generally are not taught in school and which are extremely difficult to teach to autistic kids. Wishing that a problem child would magically turn into a not-problem child because of meds and schooling is just wishing, not reality. And pointing out that your not-autistic child easily learned those soft skills? Just stop.

Parents of kids with autism have to do their best and love the kid on the coach. Criticism (however well-meant) from outsiders who have no clue is unhelpful.

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@Cardinal Fang, I don’t understand your angered response. I didn’t think our intention was to bash the OP.
I selected this career because I wanted to work with these students. I saw my sister go through some very severe behavioral and physical challenges with her child. Her child used the public schools for multiple therapies along with private pay to multiple physicians and psychologists.
Our experiences in the kind of work that we do is why we mention trying different approaches. It’s an Internet public forum. The OP can take our suggestions or not. There is no right or wrong answer. Again, every child is uniquely different and every situation needs to be approached in a manner that benefits the child.

These are our kids too and we want to help. I don’t know why people bash the public schools. We try everything to make and help the child be happy while educating them. We have paid for conferences on our own, on the latest techniques and the latest therapies. We see our students and their parents suffer. God bless all these parents that are dealing with this on a daily basis.

Sometimes medication is very beneficial. As a therapist with over 30 years invested in this area, I’ve seen the benefits of a multi pronged approach with all levels of medications. There isn’t anything wrong with giving our opinions. This wasn’t meant as a bash, this was meant as information.

56

Our 30 yr old son is in the middle of the spectrum. 12 years of hiring an aide to be with him one on one got him through school and to a regular diploma. He has sensory and social issues. Still.

The years after he graduated have been easier. His anxiety plummeted, he became more comfortable with his life and structured it mostly himself. He volunteers at a nursing home and works in the laundry and kitchen. Working for pay makes him stressed and as he says: it interferes with his schedule. Plus he’s not comfortable around lots of people.

He’s brilliant in some areas, incredible memory for things that interest him, and absolutely clueless about some skills that require multi-tasking. He’s one of the very few kids we know with autism that has never been on meds. Regrets about that? Not really. We made the decisions we felt were appropriate at the time.

To the OP: you know your son better than anyone. You assess the choices available and make the decisions that are best for you today. You can always change tomorrow. You are wise, smart, and well-educated. Plus, you have so many options available today that we just didn’t have 20 years ago.

57

I agree with @"“Cardinal Fang” . I do think some of the posts came off as quite judging and “yelling”. We can’t and don’t need to know every factor here. Meds is an option - OP has recognized this and clearly is not in favor - possibly for reasons we don’t need to be privy to know.

OP has turned her life upside down in so many ways from what she has told us over the last couple of years of coming her for help. She certainly has seemed to look for the “magic” thing for her son in his best interest. From schools to activities, to her job, to her other family relationships, through her own grief for her mother, surely for her son who it’s evident she is trying SO hard to see what makes him tick.

And assuming she is truthful ( I think you are! :slight_smile: ) she has a science related background - maybe even child development - which can make not knowing the right recipe even more frustrating.

Credit where credit is due. Suggestions welcome - that’s why she is here. Food for thought. Hearing other’s experience. Judge free zone?

I’m going to again give OP kudos for the positive changes in her life since she last checked in. Hoping for more of these for you, your sons and your family relationships.

58

We once had a challenged teen (though minor compared to OP’s son) … and there were so many med trials that DH and I started to say we were on the “med of the month club”. In retrospect, I’ll say the ones that are quick acting without ramp-up should havebeen tried first (others to hard to judge results) if you decide to give meds a go … but I’d say do it during school year when you’ll know if it makes a difference (assuming he psychiatrist likes the plan).
Per exercise- sure wish we’d emphasized that more. Years later I found this interesting book…Spark: The Revolutionary New Science of Exercise and the Brain. Perhaps it won’t help, but it can’t hurt to try.

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No vested interest in whether the child takes meds or not. The parents live in NYC, with access to unparalleled medical and educational resources, and themselves have very sufficient financial resources and academic connections. It would seem not too much, in such circumstances, to hope for a treatment plan that did not involve annual expulsion of the child. OP has stated that she is having great difficulty finding any school to accept him, though, and may not have alternatives if school 5 does not work out. I understand each child is unique, but there are thousands of bright autistic children in the NY area, most of who seem to be having an easier educational journey that does not involve 5 schools. That can’t be good for anyone, regardless of their challenges.

60

Placebo effects are true. People who’s kids got better from medications, could, just really could be, placebo effects. No matter what, I think it is extremely prudent for OP to NOT to want to give her 11 (!) year old child medications, esp psychiatric meds. The science behind these meds are constantly evolving (ie, not really solid, esp with young children.) and they should be the last resort if it ever comes to that. Behavioral therapy, diet adjustment, physical activities might have a lot long lasting positive effects with a lot less side effects (if any).