I think you’re amazing & doing a great job.
I would just add that as he gets older, the social aspect becomes more important. And it could end up being the most important thing in any given life…or at least for many. So my advice is to just keep it in mind, and help as you can when the time comes.
Agree that I’m not doing enough to improve social interactions. I’ve asked his CBT therapist for help in identifying some program of training.
Every. Damn. Thing. with this child is an entire project with research, professional services and new challenges popping up at every turn. I never seem to catch my breath. Forget enjoy. He passed F&P level N yesterday. So today was given a level N book. This particular book did not have illustrations. When his request for an easier book was met with ‘you can do it!’ He ripped the book (and had to be take out of the classroom for a cool-down). So now that’s a whole new thing we have to work on. Books without illustrations. (Not every book, but, now, some.)
It has been a never-ending stream of pain. He woke up 3-5x a night (and was not consoled by breastfeeding or anything – I literally had to walk him in the stroller at 1am, 3am, 4am around the block) as a baby till age two. At age 1 he started biting other kids, his brother. He scratched. He pinched. He is seven and I still have to watch him like a hawk at playgrounds because he gets into tangles. I have been getting stink eyes from other parents since I can remember. It is as if he was raised by negligent parents who never taught him manners yet I’m doing everything I can think of short of a) drugging the kid, which I flat out refuse to do - I happen to have a doctorate in neuroscience so the decision is well-informed and b) quitting my career to homeschool him which I don’t think would be good for either of us. I’m so dumbstruck by how my younger son glides though childhood acing everything he touches - social, academic, athletic - with basically no parental intervention. Aces! Meanwhile my older son… Then I chastise myself for being so weak. He is healthy. He his fascinated by the world around him and asks a million questions. He has a good heart and he has worked so hard to get where he is. No cancer. Buck up.
Sorry for the rant.
Aspieration - weakness? Hardly. Many don’t understand the sheer endurance, never mind the depth of thought, required to parent, especially when you can take very little for granted day to day. It can get lonely. Here’s to optimizing all available supports and taking care of yourself in the process. Have you seen the thread here for parents of kids with disabilities? There is a lot of thoughtful discussion, perhaps some it would be relevant.
When I read the caring, deep threads by parents who are addressing major challenges with their kids, all I can do is think how likely it is that things would be much worse without their efforts.
No need to apologize for the rant.
Thanks for that reply. I’ve tried to join a few support groups but find that a lot of the discussion is swapping experience about different meds, titrating doses, timings, dealing the side effects. The one mom who shared my approach (talk therapy over meds) was a homeschooler who politely but firmly disagreed with our decision to put him in a mainstream school.
All I want is for my son to be an educated, civilized member of society and be able to live his dream of working in some capacity in the sciences.
We are working on the educated part via entraining good study habits to support steady progress in a mainstream neighborhood school and the civilized part via CBT.
I don’t feel like I’m doing anything particularly radical but yet I do feel alone, judged and yes there are moments of despair.
He’s 7. The next decade terrifies.
You are not weak. You’re exhausted. Is there anyone that can provide some respite for you? Do you attend a support group with other parents experiencing what you’re experiencing. You’re doing a great job . Don’t doubt yourself. People who question your parenting have not dealt with what you are. Keep up the good work.
I skimmed. It sounds like you are doing a lot of wonderful things. What I’m going to suggest will sound nuts at first, so please bear with me.
Here’s what I’m suggesting: basic dog training. When this is applied to people, it has a whole different name and is called TAGTeaching, but it’s still rooted in modern dog training theory, which is (in its turn) rooted in the techniques developed to train dolphins and killer whales without the trainer putting herself in danger.
The fundamental principle here is that “behaviors that are rewarded get repeated.” The corollary is that YOU don’t choose the reward; it’s determined by the recipient. Bribery (luring) is not part of the procedure, so you can’t say “you get ice cream if you eat the broccoli.” You can, however, reward appropriate dinnertime behavior (not throwing the broccoli, for example) by rewarding it in a way that feels like a reward to the recipient (being allowed to leave the table or to go get dessert from the refrigerator or have his crayons and a piece of paper next to him or whatever).
So you want your son to sit down calmly (a behavior), hold the pencil (a behavior), write a sentence (a behavior)? You need to create a behavior chain and it needs to have a clear beginning and a clear end. I’d start with the “sit down calmly” part. I’d assemble a reward (pennies? nickels? a piece of paper that says “1/20th of an ice cream cone?” m&ms? crayons? something you can keep in your pocket easily, but very small), I’d put out a chair, a pencil, and paper, sit down myself, and say “come sit down.” The instant my son sat down, I’d say “thank you,” pull out the penny and put it next to my son. Then I’d get up and walk away. If I saw him pick up the pencil, I’d say “thank you” again and put out another penny. If he got up and came with me instead, I’d go back to the table and sit down again. If he came and sat down again, I’d reward again. In short, I’d create tiny, rewardable behaviors that would eventually become behavior chains of behaviors I wanted. I would be acknowledging that these behaviors are very challenging for your son, but building toward larger behaviors.
Once I got to that whole sentence? Huge reward!
For those who are wondering if I’m crazy, I’ll point out that I used this method when my kids and I were squabbling big-time during high school and college. I wanted them to accept hugs from me and to give them without me asking. So I armed myself with five dollar bills (it was high school!) and started with “Can I have a hug, please?” (I did NOT say "I’ll pay you five dollars for a hug.) Those first hugs were very tentative and stiff, but when they realized I was handing them a five-dollar bill after the hug, they got more frequent and of higher quality. After the first few, I didn’t pay off every time, and in fact, the rewards got much less frequent over time. I still hand them the occasional $20 for no good reason.
Thank you for the kind words. I’m not in a support group but I just started seeing a therapist who works with families of special needs kids. Something is wrong (maybe exhaustion?) because I have a hard time bouncing back when he has a setback. I endlessly pick-over what happened, what caused it, what to do about it, and it spirals. Even minor things feel really big.
For example, yesterday at his brother’s soccer practice, while all the other kids were waiting for practice to start, he got it into his head to kick away the balls (but would not engage in back-and-forth play when I prompted that that is how kids play soccer). I redirected him by I asking him to go do something else. He climbed on some mid-rise cement structure. A few other kids thought this was a swell idea and tried to climb up too. He tried to kick them. Thank g-d I watch him like a hawk because I swooped before he hurt anyone. I tried to explain that the kids wanted to play with him and that was a good thing but he insisted it was ‘his mountain’ and stared melting down. I took him home. The whole way I was turning over and over in my head… how am I going to fix this kid? Why? Why is it so hard? Why can’t he be more like his brother and just ‘get it’? And everyone tells me social stuff is so important in middle school and beyond and it gets harder, harder, harder. So I worry. Worry. Worry. I’m glad that I get a call or text from school about every bump because I need to know what’s going on in school. But is is hard to hear day after day, every day, about problem after problem after problem.
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Not crazy at all. CBT is essentially dog training. Same idea of rewarding the heck out of desirable behaviors (writing a sentence, doing a math problem) and when negative behaviors are exhibited (work refusal, unsafe body), focusing on prompting self-calming - but then returning right to the task. It is all about making ‘chains of behaviors’ and also building in ‘circuit breakers’ so he can (autonomously) cope when he becomes anxious aka ‘maladaptive behavior.’
As the parent of a son who experienced emotional/psychological difficulties as a teenager (he was a wonderfully cheerful and cooperative little boy) I drew a lot of comfort and learned a great deal from this site.
Several posters PM’d me with private insights and advice, for which I will be forever grateful.
Among the best ones: accept that you WILL make mistakes as you parent your challenging son. Forgive yourself in advance, and in retrospect. Just don’t give up on him, and keep reassuring him that he’s loved and respected. With time and effort you can guide him toward a productive and happy adulthood. And in the meantime - keep the faith that it will get easier.
One of the things that really stresses me out is how much power I have as the main parent sorting all of this out.
What I means is, with my younger son, I’m doing the normal stuff, and he is developing just fine.
With my older son, I feel like it is ultimately up to me how to ‘direct’ his development. Back to my first post - I’m presented with all of these decisions to be made (battles to pick?).
- We tried a 'nurturing' program for social development (small Montessori school) when he was 3/4. They kicked him out.
- Then - 4/5 - we focused on the social-emotional support (special needs school) and his academics slid behind (he still writes letters backwards sometimes including in his own name and the math is behind).
- Then - 6/7 we went for a mainstream school and the academics got 'on track' (not fully but progress enough to get promoted to the next grade) but holy cow an absolute TON of work. We did an eval to check for LD and found instead slightly above average in everything except verbal IQ which was sky-high + anxious and mildly autistic.
- Now I'm worried - while we're still supporting him academically - that the social-emotional stuff needs a lot more attention.
But what if I’m making things worse? What if he should be living on a farm, running around barefoot and poking around an old creek, catching frogs and getting himself into dust-ups without grown-ups around to intervene? My mother (rest her soul) was of the old-school opinion that he just needed a ‘good kick in the pants’ by some big boys to ‘get’ how to be social. On the other had what if leaving the SN program was a big mistake? What if he should be in some kind of intensive social skills program - screw the academics?
He spent a year - tears upon countless tears - trying to do karate. My theory then was that it was a ‘sport’ (sort of) for physical fitness (he’s a very skinny kid) and maybe he could make friends outside of school. Every class… sobbing… finally I just gave up. A year! Was that right? Wrong? I’ve dropped anything else challenging that seemed like things 7yos should do: learning to swim, learning to ride a bike. I’ve hung on to 1x week voice lessons because I think it will be good long-term to have some familiarity with music. (Also he sings like an angel.)
So “accept that you WILL make mistakes” Resonates. I’m SURE I’m making them.
Follow your son’s cues. The soccer practice was too stimulating for him, that’s why he went to play by himself . When the other boys attempted to play with him, he felt anxious and acted out. He would benefit from situations where parallel play is encouraged. I’ve worked with children like your son for many years. I really believe that he would benefit from Occupational Therapy for sensorimotor treatment and social skills training from a developmental approach.
We are in NYC. Any suggestions for service providers greatly appreciated! He has pull-out OT 1x45 (group) and speech 1x45 (group) both at school. He is receiving CBT at NYU’s Child Study Center and it has been a godsend.
Yes, you will make mistakes. You will also have successes. There are (I would guess/probably) multiple ways you can succeed with this child, and all of them will (not guessing here) involve mistakes and successes. You have thus far created a child who loves to read and enjoys science. Those are pretty cool things.
As I’ve mentioned before, your S sounds a lot like mine. Our S could not handle large groups (more than 2 or 3) well at all when he was young. He refused to play in playgrounds or swim in pools if there were other kids. According to him, they were all “weird kids.” We did not push it. Obviously, he had to go to school and tolerated the classroom fairly well. But he could not do assemblies or playground time. Fortunately, his school found 2 buddies for him and, for a while, he spent recess playing with them in the gym or a separated space on the playground. Gradually, with these 2 buddies by his side, he was able to integrate into the playground. He never joined big games, but he spent a lot of time on the sidelines inventing pretend games with his buddies. And, at age 20 he still has not learned to ride a bike!
Wish I could help you on referrals, my kids grew up in Dallas. But I understand the exhaustion in raising a special need kid. I also mourned the “normal” kid that I expected, but didn’t get. Those feelings are normal - don’t beat yourself up about it. Build on successes. Find what your kid does well and enjoys and focus on that.
Rigidity is what requires a strict environment. It’s why he thrives there. He needs to know what to expect. It doesn’t mean he will always comply, but the consistency comforts him.
I got multiple calls daily. It was awful. But you kind of get used to it. And they largely stopped when I put him in a mainstream school program for Aspergers PPD NOS kids. It was run by the county consortium of schools (Westchester BOCES). The did CBT as the core of the curriculum. The kids mainstream for certain classes. By his last year, he spent most of the day mainstreamed. So by the time he came back into district, he was ready to be mainstreamed.
He still has resources in HS, but no aides follow him. He does his own thing.
It is exhausting be you feel like you have to be the scientist and researcher and figure it all out bc there is no service out there that can do that. And most doctors are done after the DX.
Each time my kids enters a rough patch the research starts over again! And now his brother has been diagnosed. But he is older and largely has learned to cope himself. Now the social bit is ratting him out as an Aspie!
It’s a big job. But you just keep moving. You literally have no other choice, right? And as you point out, SO many people have it worse.
Hang in there!
https://www.youtube.com/watch?v=SCAGc-rkIfo
I apologize for not really knowing how to post links here.
I have been following this thread, and I want to commend you OP for the excellent job you are doing navigating parenting a challenging child. It also sounds like you are going through a process of grieving, both of your mother and the potential for a “normal” child. Parents of special needs children do go through bouts of grieving, it is a healthy process. Kudos for you for seeking therapy, it sounds like having a place to process your grief is important right now.
You have not mentioned ADHD, and I am not suggesting that ADHD is in the mix. However, there is often a large overlap in behaviors between ASD and ADHD, and many things that you describe are also common with kids with both ASD and ADHD. This link above is to a very long (almost 3 hours) long lecture by Russell Barkley, a leader in the field of ADHD, and extremely informative. It is parent focused, and he is a very compelling and compassionate speaker. The reason I am posting it is because of his presentation of executive function problems which, as a neuroscientist, you probably know affect ASD kids as well as ADHD kids. Learning more about executive functioning issues might lead you to more strategies to try as you continue down this path. Take or leave Barkley’s advocacy for medications and even the video. But some of the ideas might help. He also makes some great comments about parenting and social skills training out of context that counter lay person’s beliefs about raising these types of challenging children.
The school your son is in sounds great, particularly in their willingness to work with you. The multiple daily contacts sound both great and discouraging at times, but with all the approaches you and they are taking, I suspect the need for these will diminish over time. Best of luck to you.
While trying to sort through DD’s high school challenges, I attended a presentation by this local author. It was not applicabel in our case, but it 's an interesting book that might help OP or others - http://www.amazon.com/Visual-Spatial-Learners-Alexandra-Golon/dp/1593633246
Funny tidbit - This author/mom made her bright, disorganized children keep their shoes in the car. Her husband scoffed at that and handled things differently when she was traveliing… Guess what husband showed up at the airport to pick up his wife with shoeless kids?
I found out yesterday that the school principal has personally become involved in working with my son to support him transitioning to books without illustrations. The school has created a special blank notebook in which he can create an illustration for each page he reads. They texted us a photo of his ‘illustrations book’ last night, sitting on his desk waiting for him. He got excited.
We doubled his CBT session frequency starting next week and we’re going to switch from a regular pediatrician to a developmental-behavioral pediatrician.
You guys have been wonderfully supportive with your suggestions, link, recommendations, anectodes and ‘hang in theres.’ I thank you sincerely. Whoever recommended ‘Raising Your Spirited Child’ – thank you! I started crying a few pages in.
You are doing an amazing job and I applaud you! While we didn’t have nearly the issues your S presents, we had the first boy in our extended family and he did not behave anything like my older sis’s “perfect girls.” He was blamed for not being quiet and compliant at all extended family gatherings like her kids, which made no sense to H nor me.
It’s so wonderful to hear about the nurturing setting your S is currently in. Our D had a significant struggle with her 1st grade teacher about borrowng books. The teacher only wanted her to borrow picture books but she only wanted to borrow chapter books that had gorgeous illustrations. Fortunately, I took her to the library frequently and let her select the books she favored. She never read “picture books” but started reading books with gorgeous illustrations that she loved.
It sounds like the principal is very attuned and caring. Having an illustration book is a great solution that reconizes our son’s interest in having pictures of what he is reading while moving him into more difficult reading material. We also were thrilled that our public library had a large selection of graphic novels–classic novels in comic book format that had tons of pictures on each page while having the same storyline and vocabulary as the original text. Our entire family read a ton of books through graphic novels. If it’s something that brings pleasure, it might be worth consdiering for your family as well.
My therapist has asked me to try one of two strategies when my son is behaving in a challenging way – if he is not hurting anyone, ignore him (this is the ‘dog training’ theory that any attention reinforces behaviors). The other strategy is ‘passive-voice reflection’ in which I say what I see him doing and wonder about it in a neutral third person. “You aren’t coming to the table to do your math facts flashcards. I wonder why?” This is the collaborative problem solving approach (well, sort of, it is of the ‘emergency plan’ variety) in which you dig for information about why something is challenging and invite the kid to brainstorm something that works for both of you.
I’m finding these surprisingly hard to do! I now see how much cajoling, bribing and hothouse-flower-gardening I do!! My usual approach would be something like, “C’mon let’s do 10 flash cards and then you can have a granola bar and take a break. OK? Do you need a piggyback ride to the table (from the couch!)? Here, climb on…” Like that. It is unhealthy for my kid as well as it is for me because underneath the coaxing smiles I’m silently screaming JUST DO THE DAMN FLASHCARDS FORGODSAKE.
Here is a perfect example of how I got sapped doing hothouse flower gardening (a morning of doing math problems and spelling practice followed by a walk to have lunch out) and missed a chance to deploy the ‘ignore’ strategy.
Me: “Isn’t that building gorgeous with all the facade work? I love the old buildings in our neighborhood.”
S1 “I only like modern skyscrapers filled with technology! Old buildings waste energy. Anyone who understands science only likes modern buildings with technology.”
Me: “Excuse me, I understand plenty of science and I still like old buildings! If fact, I bet there are lots of scientists living in these old buildings.”
S1: “When I grow up I’m going to demolish old buildings that waste energy and build new skyscrapers that have the best technology!!”
Me: “Christ almighty! I can’t even make a comment without getting into an argument with you! Forget. We’ll walk silently.”
S1 “Fine! Forget it!”
A lot of my parenting time is spent either one extreme (hot-house-flower gardening) or the other extreme (myself modeling unsocial/explosive behavior).
I’ve been ruminating this weekend about how much damage I’m causing in this way. Well at least I’m now conscious of my incompetence!
^ that was my weekend too! Don’t beat yourself up too much. Adults have frustration limits too.