Worried about his future - PDA, ASD, ADHD

[Anonymous]

Anonymous wrote:OP this is 08:21 again. We're all concerned for our children's future relationships both personally and professionally, and most of us fully support early intervention to develop good coping skills. But you have a long road ahead of you and PDA research can lead you down a rabbit hole.

You need skills and frameworks. Repeating my suggestion that you take Parent Child Journey.

I have been meaning to take the Parent Child Journey course, but as parents of a preschooler, the topics are really overwhelming frankly. Some areas are just not yet relevant yet, or not at all. This was his Fall schedule...yes surely some topics could be relevant for a preschooler, but overall I think his classes are aimed at older kiddos.

SEP 6: ADHD Part I, Helping Your Child with Medication
SEP 13: ADHD Part II, Problems with Medication
Sep 20: Anxiety Part I, Child-Centered Approaches
SEP 27: Anxiety Part II, Parent-Centered Approaches
OCT 4: Coexisting ADHD, Anxiety, and Autism
OCT 11: Neurodiversity, Gender and Sexual Variation
OCT 18: Children and Violent Play
OCT 25: Helping Siblings Get Along
NOV 1: Helping Your Child Experience Social Success
NOV 8: Helping Your Child Learn Healthy Eating Habits
NOV 15: Helping Your Child with Sleep Problems
NOV 22: Working with Your Adolescent

[Anonymous]

Yeah I echo the advice to just focus on what you can do now and dont spiral in to what ifs. None of us have those answers for our kids. We are all concerned about it. We all know stories of kids with same diagnosis who are seemingly well adjusted and successful and stories of those who are not. Its not within your control. Learning to parent the child you have and letting go of expectations is going to be key for you.

[Anonymous]

OP this is 08:21 again. The list of topics you posted are extra classes. The actual class is 10 weeks long and here are the topics. I would suggest you take it with your spouse or co-parent if you have one. Do all the homework.

1. Know your child
2. Time in
3. Engagement and understanding
4. Motivation through positive attention
5. Motivation through experience
6. Motivation through rewards
7. Problem solving
8. Time out and ignoring
9. Pausing for empathy and self-reflection
10. Accommodations/interventions

[Anonymous]

Anonymous wrote:OP again. I’ve only just started reading about PDA and a lot of the advice is about reframing demands to see more like a choice or a collaborative task. I’m more than happy to do this, and he has wonderful teachers and therapists who will do this too. I just worry for his future. His colleagues and boss aren’t going to keep rephrasing demands until he’s no longer triggered. I think everyone is becoming more understanding about what it means to be on the spectrum, but I’m concerned for his future relationships both personally and professionally. I appreciate what the PP is saying about my anxiety not changing the outcome, but I want to make sure I’m getting him the right help while he’s young so he develops good coping skills.

We are all trying to be gentle here because we can tell you’re in crisis. But here’s the reality. You will never know if you got the right therapy because you won’t know the outcome had you done different things. And what’s right for one kid might not be right for another. And treatment might change as time passes - meaning that what we’re doing today might be found to be harmful or misguided tomorrow. You have to learn to content yourself with knowing you’re doing the best you can with the information you have.

Also, the worst is likely yet to come. Puberty can be hell on earth. On the other hand sometimes maturity changes things but that’s a long time away.

[Anonymous]

Op I have a ton of empathy for you. My kid is similar and I worry about him constantly. I think he is probably a little older than yours and a lot of the symptoms you describe have gotten much better with structured school. You could also try ADHD medications. Do you have have special ed preschool available to you?

[Anonymous]

+1 on Dr Shapiro class. Changing my parenting style made all the difference.

And +1 on not borrowing trouble. Stay attuned to what your child needs and work from there. Try therapies that make sense for your family (time, cost) and trust yourself if you don't think it's working. There is a lot of pressure to do as much as you can early on, but IME you can do them later, too--sometimes therapies work better with a more mature brain.

In general, maturity helps so much. You are in some hard years right now (and eventually puberty will make it harder again for a while), but your kid will make lots of gains! Celebrate that. (At 7, I was secretly terrified my kid would become a school shooter bc he was so reactive at school. It gets better.)

I'm not trying to be toxically positive. You are going through your own adjustment period, and it takes time to acclimate. Be gentle with yourself and your feelings.

The goal for any parent is to support their child to have the life the child wants to have. They are who they are, and there is never a guarantee. In the hard moments, remember that there are a lot of years and changes and growth to come.

And please remember to enjoy your amazing kid.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Op - there’s so much crossover with all those. I am always a little circumspect when someone gets given so many labels. Tell us his specific challenges and we can be more helpful

OP here. At school and therapy, we see the PDA any time a demand is placed on him like fine motor skills. He’ll try to elope, becomes hyper and moves around the furniture, flicks light switches etc. It limits his progress in school and OT. He has no issue participating the rest of the day whether it’s circle time, story time, or snack. At home, we see it with any demand like potty time, brushing teeth, or taking a bath.

Op, has the parent of an almost 9 year old with autism, what jumps out to me most here is that most of these things he is avoiding seems to have a sensory component to them. I also wonder if there isn't a communication part of it too, as far as maybe your son can't yet communicate things very well, I didn't catch if he was verbal or not. When my kid was two or three, she was resistant to things like teeth brushing, potty training, and the bath for the most part.
But these were delays in gross and fine motor skills. You also mentioned your son having a hard time in school when it's time to use fine motor skills, does he have a delay in those?

I'm not trying to argue for or against the pda, it's just that these things jumped out to me is perhaps being more delays related to the autism rather than PDA, just related to the fact that I had a child similar and she is not at all pda, in fact she's really well behaved.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP again. I’ve only just started reading about PDA and a lot of the advice is about reframing demands to see more like a choice or a collaborative task. I’m more than happy to do this, and he has wonderful teachers and therapists who will do this too. I just worry for his future. His colleagues and boss aren’t going to keep rephrasing demands until he’s no longer triggered. I think everyone is becoming more understanding about what it means to be on the spectrum, but I’m concerned for his future relationships both personally and professionally. I appreciate what the PP is saying about my anxiety not changing the outcome, but I want to make sure I’m getting him the right help while he’s young so he develops good coping skills.

Is it the case that he will need this support (reframing all requests as choices) forever? Your kid will still mature and change as he grows, so I am not sure that meeting his needs now means you will have to do the same things for his whole life. Arguably, meeting his needs now and then supporting him while challenging him to accept demands in small doses over time is how he will be successful, right? So reframing things is a “for now” thing to help him feel safe and secure enough to handle requests in the future.

Don’t discount maturity. Even for complex SN kids it can really help (until teenage hormones!)

OP here. Thank you for this. That’s a great way of thinking about it.

[Anonymous]

Anonymous wrote:OP this is 08:21 again. The list of topics you posted are extra classes. The actual class is 10 weeks long and here are the topics. I would suggest you take it with your spouse or co-parent if you have one. Do all the homework.

1. Know your child
2. Time in
3. Engagement and understanding
4. Motivation through positive attention
5. Motivation through experience
6. Motivation through rewards
7. Problem solving
8. Time out and ignoring
9. Pausing for empathy and self-reflection
10.Accommodations/interventions

OP here. The PP was someone else. These classes sound very helpful. I really need to take a step back from the trenches and reevaluate how I communicate with DS. I think I’m naturally kind and patient, but I haven’t developed concrete strategies like these.

[Anonymous]

Anonymous wrote:OP again. I’ve only just started reading about PDA and a lot of the advice is about reframing demands to see more like a choice or a collaborative task. I’m more than happy to do this, and he has wonderful teachers and therapists who will do this too. I just worry for his future. His colleagues and boss aren’t going to keep rephrasing demands until he’s no longer triggered. I think everyone is becoming more understanding about what it means to be on the spectrum, but I’m concerned for his future relationships both personally and professionally. I appreciate what the PP is saying about my anxiety not changing the outcome, but I want to make sure I’m getting him the right help while he’s young so he develops good coping skills.

Sorry but yours going to have to detach from any expectations for the future. Just look for day after day small wins, don’t bother worrying about the future. You can only do what you can do; and you never will know what pays off or not.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My sweet preschooler has been diagnosed with ASD Level 1 and ADHD. I know there’s debate around PDA, but he fits this profile perfectly. As his parent, I’m willing to completely change my parenting and communication style to help him but the world/everyone else won’t. Any advice? How is it going with your teens and college students with PDA?

I'm surprised a preschooler was DX with ADHD...I thought you had to wait until school aged to get a real DX of ADHD...?

Tons of young kids have the diagnosis. It’s necessary before you can start medication.

[Anonymous]

Dont lose YOUR sense of self.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Op - there’s so much crossover with all those. I am always a little circumspect when someone gets given so many labels. Tell us his specific challenges and we can be more helpful

OP here. At school and therapy, we see the PDA any time a demand is placed on him like fine motor skills. He’ll try to elope, becomes hyper and moves around the furniture, flicks light switches etc. It limits his progress in school and OT. He has no issue participating the rest of the day whether it’s circle time, story time, or snack. At home, we see it with any demand like potty time, brushing teeth, or taking a bath.

Op, has the parent of an almost 9 year old with autism, what jumps out to me most here is that most of these things he is avoiding seems to have a sensory component to them. I also wonder if there isn't a communication part of it too, as far as maybe your son can't yet communicate things very well, I didn't catch if he was verbal or not. When my kid was two or three, she was resistant to things like teeth brushing, potty training, and the bath for the most part.
But these were delays in gross and fine motor skills. You also mentioned your son having a hard time in school when it's time to use fine motor skills, does he have a delay in those?

I'm not trying to argue for or against the pda, it's just that these things jumped out to me is perhaps being more delays related to the autism rather than PDA, just related to the fact that I had a child similar and she is not at all pda, in fact she's really well behaved.

Yes! I forgot to mention in the post that DS has SPD. I know it’s not a true standalone diagnosis, but his constant need for motion and his tactile avoidance have always stood out . Now that he’s in preschool, he’s dropped many of the sensory behaviors but they come right back as soon as he’s presented with a challenging task. We try to simplify the tasks and meet where he’s at, but it’s so hard to get him to practice.

[Anonymous]

Have you considered ABA for him? Some places have a school readiness program where they help kids learn how to be in a classroom. It might be helpful to look into.

[Anonymous]

Anonymous wrote: Have you considered ABA for him? Some places have a school readiness program where they help kids learn how to be in a classroom. It might be helpful to look into.

He’s starting next week. It’s an ABA center with a school readiness focus. His OT thinks we’re not going to make a ton of progress on fine motor skills until ABA helps us with the avoidance issues I described.