@abasket OP has disclosed in her other posts that professionals have recommended medications which may be why she initiated this thread to get input from others facing similar decisions.
^^^I understand that. It’s my personal opinion (which can be considered or ignored!) that opinions are good and important - but can also get overwhelming and difficult to sort out after awhile. OP has a meeting coming up with a professional well familiar with her son - his entire history, etc. At some point you can research and “suppose” the heck out of something but you also have to trust - and be prepared to move forward with a fairly clear mind.
OP, best of luck - your love and support will mean so much to your son, always.
If meds can help, I think it is worth considering. Just be aware that it may take some time to find the right med / dose (been there, done that - teen with different issues)… As you try new med(s), be sure to ask if it’s something that should be immediately helpful or gradual over weeks. We procrastinated adhd med trial (which could have been quick yay/nay) not realizing it would not take a month to ramp up like prior depression meds.
I would try the meds. It is not something people just talk about with other parents, but I bet you their are many many kids in his class who are on some type of anxiety, ADD meds etc. In my health class in high school we did an anonymous survey and 15/22 kids in the class were on prescribed medication for anxiety/stress/ADHD etc. This is also at a very high achieving school so kids are probably a bit high strung but still…it was really surprising
Part 1 of 2
S1 just completed a neuropsychological evaluation and we are awaiting the results. He had his first at 4 (dx’ed with autism) and his second at age 6 (autism confirmed and he met the criteria for generalized anxiety). We’ll get the 8yo result any day now. We will continue to have him evaluated every two years to monitor his profile.
He sees many therapists - OT, speech, CBT, ABA and social skills training. We have good coordination of care out of school and following the neuropsych results will coordinate with the school-based team.
Nothing is a slam dunk for him therapy-wise. He picks up bits and pieces from each. I think he gets a lot of behavior modeling from reading Calvin and Hobbes. That is, I think he strongly relates to Calvin, studies Calvin and apes Calvin (which has its downsides as Calvin is not exactly a model of how to be a kid in school. But I digress…)
We probably made a big mistake pulling him out of a special needs program after K and putting him in a pretty rigorous charter school (think strict Catholic School minus the nuns).
At the time - two years ago - I was obsessed with academics. He didn’t learn to read in K and I was terrified that on top of all of the other issues we were dealing with, the biting, the scratching the verbal threats - he would be academically behind too. I was also hoping (fantasizing?) that he would grow out of/mature into a more typical kid and that by planting him in a mainstream school he would “get with the program” as my late mother would put it.
1st grade went well (amazing teacher) and he made some friends. But when writing became a bigger part of school, he became more reactive. He spent much of 2nd grade in the school psychologist’s office, coming down from a tantrum triggered by being tasked with plain old vanilla school work.
At the beginning of 3rd grade, I decided to shadowed him for a full day to see school through his eyes and immediately saw that he was being basically “stored.” That is, he was physically in school but in no way shape or form participating in the classroom dynamic - not academically, not socially.
H and I went into “rescue” mode and frantically (and rather miraculously) got him his spot back at his old school, a very well-regarded special needs program in a public school (it is called ASD Nest).
Part 2 of 2
Right now we are all trying to figure out - parents, teachers, therapists - what he needs to “cope” with plain old vanilla being a 3rd grader.
1:1 he can absolutely do all of the required work. He can write, do math, etc… YES he balks, he fusses, he makes a speech about the cruelty of adults in their endless quest to kill the joy of learning, if you bring up learning so that you can have a job, he makes a speech about how money has ruined the spirit of humanity and we should go back to a barter system. You find yourself arguing the point before realizing that with a proper incentive (he loves a show called PBS kid show called Wild Kratts) he will just pick up a pencil and work.
I don’t know how you make a kid “bond” with the school experience and, no, we didn’t help matters by yanking him from school to school (three different schools btw preK-3rd grade). But we do think that is is critical that he finds peers (he currently doesn’t have any friends, it is still early in a new school) and “gets” that school does mean doing work that isn’t as thrilling as a cool graphic novel or latest/greatest encyclopedia of ecology – but it is “doable.”
We all need friends. And his social skills are Martian.
Today on the bus ride home from a swimming lesson, we were sitting next to a quad of middle school-aged girls recording the greeting on one of their cells. They were playing with singing and S1, fascinated, brazenly suggested a Star Wars theme and then belted out some John Williams in 8yo falsetto.
The instinct was beautiful, the concept naive, the execution was clueless – though just inside the foul line of cute.
S2 was mortified. The girls were as nice as middle school girls in the situation could be (looking to me and asking, with their eyes, well what do you expect us to do?).
I’m no longer worried about academics. I’m now adept at utilizing online materials for academic support (he’s a CTY kid) and there are oceans of common core support books and tutors.
I think for S1 school is his laboratory for figuring how how to relate to people. Authority figures and peers alike.
I’ll loop back when we meet with the psychologist to go over the evaluation and have our meds discussion with the team. I’m so grateful for the care and smart support I’ve found here.
@Aspieration… As the parent of a child (now adult) who was diagnosed with an alphabet soup of disorders and tried many medications over the years, I’ve been following this thread with interest (but with no advice to offer that would be better than the advice other posters have supplied so eloquently). And I have to say that in the midst of feeling your pain and feeling bad for your son, this line of yours broke me up completely: “his social skills are Martian.”
My D’s ADHD-based impulsivity and poor social skills (part of her nonverbal leaning disability) combined in frequently disastrous ways–she often came up with the wrong thing to say and then blurted it out before having a chance to reflect, as she often would post hoc, that it was indeed wrong. My most memorable “Martian” incident occurred when she was about 10 years old and I was driving home a new acquaintance whom she had invited over for a playdate. The afternoon had gone well enough for me to think a friendship might ensue, and the two of them were chatting away in the back seat. After a brief pause in the conversation, I heard my D say, “You know, you have a mustache.” I nearly drove off the road. Of course later at home, D said, " I knew after I said it that I shouldn’t have." No, there was to be no friendship.
For what it’s worth, D’s in grad school now, living independently in a big city, able to navigate through life, perhaps not perfectly, but well enough to succeed in academic and workplace environments. She’s still not exactly Miss Popularity, and will always feel a little out of sync in social situations, but she has a small handful of stalwart friends who tolerate her quirks and appreciate her kindness and loyalty.
I am also the parent of a very high IQ adult Aspie… I have read this thread over the past few days and have lots of thoughts, but none that I feel I can articulate clearly via a chat board. I haven’t had the opportunity to focus enough on just a response in order to respond. But I woke up and now have insomnia, so this is my not sleeping, but dead tired, attempted response. So, please take everything type as shared with the kindest intent. Raising our son has been a very emotional and financially stressful experience. When I read about your sons behaviors, I have lived them. Your posts are amplified by my memories of his extreme behaviors during puberty and tempered by the young man he is today.
If you try meds, I recommend keeping a med journal. Keep a diary of the behaviors you see so that you don’t have to rely on memory. You want a written record of the changes you see. Ask if his teacher might be willing to do the same. Ask him daily how he feels and record it.
Love the child you have today. You can’t change the past. You can’t see th future. The only thing you can do is help him day by day be the best him he is capable of being. It means letting go of the future him you envision and embracing the him who he is.
That last point leads into the one that made me the most furious yrs ago when he was younger, but it is the one that is the most relevant to his life today. When he was about 14, one of his therapists said, “All the academics in the world won’t matter if he can’t hold a job.” It really upset me bc our son was extremely intelligent and a great student. I felt that therapist was giving up on him. But, I was blind to the seriousness of how his deficits impacted his independent functioning. After yrs of therapy, paying for additional supports at his school, our high GPA student dropped out of college. He just could not cope.
Our ds really struggled for a long time bc he has the double whammy of being extremely intelligent but not being able to handle big picture scenarios. He is great when he knows exactly what is expected. But, open-ended, implied (not explicit) expectations throw him overboard. If a,b,c are defined expectations and d and e are assumed and obvious to everyone else, he completes a,b, and c and doesn’t understand why d and e enter into the discussion. If something changes midstream and the normal response is to go with the flow and deal with the change, he has a complete and totally out of proportion meltdown (even as an adult.) Constantly changing expectations (as in non-repetitive work) is extremely stressful. He needs work to be repetitive for him to cope without feeling anxious. He also works very methodically. He is not going to win a production race. Staying on task, focusing…those are huge energy eaters for him.
He has seriously struggled with adulthood expectations. He has had to let go of his dreams for himself. We have had to encourage and support him for what he is realistically capable of achieving. Learning to hold a job and live semi-independently has been a huge hurdle for him. His job right now? Donor greeter at Goodwill. If you had told me 10 yrs ago or even 5 yrs ago that I would be thankful that my ds could hold that job, I would have snickered believing it was way beneath him. But, with all of his other issues combined with impulsive behaviors and impulsive speech (not good for a lot of employment situations), Goodwill has been an absolute blessing bc they accept him for exactly who he is.
After working at Goodwill for 2 yrs, we moved him into an apt where he could walk to work. He is blessed by living in a village type town and can walk everywhere. (He refuses to learn to drive.) He cooks his own meals and manages his time for getting up and to work on time. He cannot yet cope with managing his money, paying his own bills, etc. Everything is being mastered one tiny baby step at a time. He just celebrated his 1 yr anniversary in his apt.
He is starting to talk about wanting to go back to school or looking for a different job. He is growing up and becoming his own person in his own unique way. We had to let go of any preconceived ideas of his future. We learned to celebrate as accomplishments things that seem like automatic, no big deals for other people. Every independent living function he achieves is another victory. We have to be his cheering section bc otherwise he will start comparing himself to others and get angry at himself for what he isn’t doing vs focusing on what he is. He sees younger siblings achieiving things that he himself hasn’t. It is hard. We have to help him focus on loving himself for who he is.
Fwiw, he is one of 8 children. None of the other kids have his issues. What caused him to have so many debilitating problems? I have no idea. Even if I knew, I couldnt change it. My energy is better focused on positively influencing his life. There have been times in his life where that has consumed every ounce of my being.
Be confident in yourself. You are his mom for a reason. He has been blessed into your life. You can’t see the future, so give yourself the freedom to make the best choices possible with the information you have. Give yourself permission to not know the outcomes bc you can’t. If you make mistakes, forgive yourself and tell him you made a mistake and you are sorry he had to experience it, but you will keep trying together.
Best wishes. (And I apologize if that was incoherent or full of strange autocorrects. I am too tired to proofread.)
@Mom2aphysicsgeek Wonderful, helpful, supportive post. As you said intellect is just one component in being a successful person. Often the social aspect is minimized because it comes easily for many people. Congrats to your son for his success in living independently and working. Clearly , he and your family have worked very hard to achieve what he has. Good luck to him as he continues to navigate life.
here is the thing…behavior IS communication.
it stinks to be a kid. people are constantly making you do what they want you to do. while of course there are societal expectations and a rhythm to the day, when someone is forcing you into a box to make you (write/work/sit still/whatever) when its difficult for you, a kid cant exactly say i cant/wont/dont wanna–hence the behaviors.
think about your adult life. if you dont FEEL like breakfast at 7am, well, you can skip it. dont want to sit down and pay the bills at 1:45? surely it can wait until later tonight. kids dont have the luxury (at least during the school day) to say, gee, i’m not in the mood to read right now, can it wait? well no, ILA is at 10:30, so sit down and read right then.
if it were me, i might look beyond the mindset of “well he CAN do it”. just because he’s bright doesnt mean he has the fine motor skills, the executive function, or other components of the skillset needed to complete the task. maybe he does, maybe he doesnt-but clearly his behaviors point to something missing. it may take a lot to tease out where his specific issues lie and how best to adapt to them–probably above the well-meaningness skillset of a school OT who comes in 2X month.
i would address the issues at hand right now instead of focusing on the future. as most of us can attest to, our 8 year olds were VERY different people than our teens/adult kids. its very hard to constantly worry about what will be…even people with NT kids dont have that crystal ball.
meds can be very helpful, particularly if behaviors get in the way of learning. i dont even mean formal education–it includes the learning of coping skills and other mechanisms to get through the day. if your doctors, whom presumably you trust, are reccommending it, then its worth trialing. my only advice is that be forewarned–it IS a process and not an exact science. many times there is a long road of dose tweaking and multiple trials with different meds before you hit on the right thing.
the vast majority of kids do well when they can.
if they cant, they dont.
just some food for thought.
I homeschooled one of mine at this age, to get a better handle on the problem. Much later this same child was medicated and to tell the truth, it was similar to when he got eyeglasses. The world came into focus for him and he came into focus for the world. But this was after trying several meds.
Please don’t compare this decision to the decision whether to do insulin for a child with diabetes. My daughter, who has type 1, would die in a few days without insulin. NOT the same thing. People don’t understand type 1 diabetes.
@MommaJ @Mom2aphysicsgeek - THANK YOU for sharing your experiences. I concur with @carolinamom2boys - you both have been models of loving, caring parents.
@Mom2aphysicsgeek I think of you often based upon previous exchanges on different threads. You represent an inner voice for me now that gently but firmly insists on elevating the status of life skill basics.
Put another way, I dial DOWN my excitement that S1 has somehow acquired domain expertise in harnessing greenhouse gasses to terraform planets and I dial UP my enthusiasm that he wants to have a Halloween party.
Hearing from real parents who have experience raising a challenging child is absolutely priceless. Better than any book, any academic talk, any scientific journal article.
The two things I wrote down on big index cards to pursue tonight are:
- Meds Journal. This can start now (no meds). I need to figure out what to track e.g. sleep, mood, negative talk, aggression, etc. (and make it comprehensive enough to be useful but simple enough to be used). Hat tip @MommaJ
- Skills Inventory. This is something I half-investigated awhile back in a post. What should an 8yo boy be able to do? I want to "map the gap" (dress for school - check, make a no-cook breakfast without chaos - no check, have a back and forth conversation - no check, etc. and use our resources (10+ hours of in-home ABA therapy per week, CBT, social skills therapist, etc.) to target the gap. We should develop goals collaboratively with S1 and work towards them, incrementally, just as we would do with academics work. Hat tip @Mom2aphysicsgeek
These two “reports” should be able to help us stop reacting to the one negative thing that happened today and see the bigger picture of growth - with real data.
Guys - I’m feeling SO HOPEFUL.
I can totally relate @Mom2aphysicsgeek . In children with autism who are also highly intelligent social skills, conversational skills and handling change and unspeaken expectations is huge. But it is also important to realize that there is significantly more uneven development with these children. At 8 y/o my son could not have a back and forth conversation( he still struggles significantly with this at times), could not make any food, tie his shoe laces, and still had significant anger and aggression. He had fine and gross motor deficits which made learning all these things difficult. We posted charts everywhere. In the bathroom were step by step charts for how to brush your teeth, what order to do hygiene, how to shower etc. Good behavior was rewarded. Initially daily and then weekly, etc. Same at school. But we had to learn what triggered behaviors. For example, he was such an advanced reader that when they were reading at school son found it painful and could not listen and so would just open his book and read and then would be so far ahead he was bored by what was happening in class and would act out when reprimanded for not paying attention. Worksheets were the worst because writing was so difficult early on. In the early grades we basically ignored school. This may not work for everyone. But homework time was spent on social skills and behavior modification. We practiced how to behave at school. There is no carry over for some of these kids so every situation that we would see as the same would throw off son as he would find the most minute reason it was different. So we had to teach him how situations were similar and how to handle that. This may not work for your son but try and take it from where he is and work on where he needs to be. I won’t say it is easy. I have no idea how college will work for son but looking back the incredible changes and progress are easy to see. Hugs. Hope you find the answers that work for your son.
The suggestion of keeping a behavior journal is excellent. I would start one now BEFORE going on meds.
Then you have something to compare more accurately.
Journals are also good for pin pointing exact triggers. Is it all types of written work? A specific type? A certain time of day? After lunch? The directions given are too ambiguous? Does bribery really work? Would it work at school?
These are all things that often don’t show up until written down (sometimes you think you know but can miss a pattern).
I know this sounds totally naive but since he loves books is there a kid’s ettiquette book with situations in it that would help? I just remember the old Highlight magazine with “Goofus and Gallant” in it.
Another vote for just trying the meds.
Regarding writing. I had a kid who was an early reader, but just hated writing. For him I think the biggest roadblock was his perfectionism. He worried about writing something interesting enough. He knew what good writing sounded like, but couldn’t reproduce it. And most of all, it just drove him crazy if he couldn’t spell things correctly and his teachers thought it was less stressful to use invented spellings rather than correct ones. (For some kids maybe - not for him.)
On the topic of feelings of responsibility and guilt for children: I have a coworker who has twin children, now age 19. The daughter is a sophomore in college and is extremely bright, engaging, and accomplished in nearly everything she does. Her brother has severe physical disabilities, including autism. He will probably always need to live with a caregiver.
If you haven’t already eliminated food allergies as a contributing problem, I would add food to your journal. Sometimes with kids (and even adults) food problems lead to a vague feeling of discomfort that they don’t know how to describe. Not saying this would be a solution to any of your main issues and it’s not a magic wand, but if eliminating certain foods slightly leveled the playing field and wasn’t too hard to do it might be worth it.
Sorry if this has been discussed in one of OP’s other threads.
@kac425 Clearly you have limited understanding of what OT has to offer a student. OTs have years of education on how to evaluate and develop treatment plans for sensorimotor skills, attention, concentration, social skills, etc that exceed a “well meaningless skills set .” No need to minimize the importance of an adjunctive treatment.
You are a wonderful mom! Your sons are so lucky that you are so thoughtful and perceptive to both of their needs.
And just a thought,…vanilla is just one of the flavors out there. As a former teacher, I always appreciated the more unique–and even more challenging from a teaching standpoint–students. Once you get the extremes in his behavior managed, I’d rejoice in his uniqueness. I know you cherish this in your son, and am so glad you are protective of what makes him…him.
This thread comes at a great time. I am also struggling with a lot of the same issues. My 11 year old son has ADHD (Inattentive), anxiety, and multiple LD’s. We have medicated him since he was six and he has been on a laundry list of medications, none of which have had a noticeable effect. Last spring he was on Concerta but that made his anxiety level too high. So the psychiatrist added Celexa and that made him too relaxed. So he then added Risperdone to curb impulsivity. Finally, he added Clonidine to try to enhance the effects of the Concerta. Nothing was working and my DS was a zombie so we took him off. However, this new school year has already been a nightmare. I actually received an email from the school social worker suggesting I put him back on medication. Needless to say I sent her his entire history of medications.
Now that said, I am not anti med. I am anti meds for my son right now. I envy you in that you probably live in one of the best cities in the world to access psychiatric care and support for your child. We live semi rurally and it took years to find a psychiatrist who would take children and also would prescribe meds (previously he had pediatricians and psychologists working together on this and there seemed to be a disconnect most of the time).
I also struggle with the same conflicting emotions that you do about homeschooling. My son needs the socialization but the stress of school is hurting him and hurting our family. He has a couple of teachers that seem to think he is lazy and refusing to work. It’s such a long story but I find that most teachers are not educated about issues like ADHD and Asperger’s. One of my son’s teachers keeps threatening to send him to the principal for his throat noises, foot and pencil tapping, which are all things he does when he is under stress and does not realize he is doing. I told her that if he is going to be punished for things he cannot control then I expect all the children that cannot go to PE because of sprained ankles will be punished too. It is the same thing.
Sorry to make this about me but I am comforted that there are others out there in the same position. I also have no clue how I could make the homeschooling work and keep working outside the home. I may have to find out. I gave us this year but if things don’t get better we will have no choice. I cannot keep having his self esteem injured from the constant berating he gets at school from certain teachers who thing that his lack of attention is conscious obstinate behavior.
Good luck to you!!