I guess we are still in denial???

[NorthernBeth]

So it was National Aboriginal Day in Canada yesterday.  I was all excited to talk our 11 year old ( who is First Nations) to see the festivities in a nearby town  that had more going on than our little place.  It was about 90 minutes away.   I had visions of how much fun this was going to be-- seeing the outfits, hearing the music, watching the dances, looking at the crafts, etc.   The drum beats were starting up and some beautiful women in festive costumes were just entering the middle of the room.   I strode confidently in the arena,  and then turned my head to talk to family.  And they weren't there..........

Scanned the room anxiously and discovered my son wedged up against a pole, gripping my husband's hand tightly, face screwed up in tears.  My great big husky 11 year old who looks more like a 13 year old.     I ran over to them and he was saying,  " Too loud!  Too loud!"  We hustled him out of there, went to a nearby store and let him walk around calming down, and bought some earphones. After about 90 minutes,   we tried again.  It was quieter. This time he made it about 5 minutes, while squeezing my hand with all his might.  Then we left cause that was all he could take.  And drove 90 minutes back home again. 

What on earth was I thinking?????  It is like I can't quite seem to make myself believe how hard he finds stuff.  I feel like such an idiot.  

When do i finally get it??? 

[PeterPan]

It's hard dealing with new/dynamic/unfamiliar situations, and it's hard when you have what you want to do and the dc has the support he needs. I've done the same thing, not anticipating support needs and being caught on the fly, so it's not just you, sigh.

When you took him for evals, did they diagnose the spectrum? If they didn't, then that's making it harder because they're not giving you a support level (or mixture of support levels) for him. It might sound trite, but it was a really big deal to me when I finally had a psych say yes, let's bump him to ASD2, that his support level is *2*, meaning he requires substantial support. Those numbers are NOT severity level, and it's a really common misunderstanding. They're support levels. That support level explains why I struggle to take my ds with disabilities AND another person with disabilities places at the same time. In just one of those odd things in life, I have multiple people in my life (adults) who also have support needs that I like to do things with. But when my ds is along, I need one person assigned to the adult with disabilities and one person assigned to ds, end of discussion. And that person assigned to him has to be all the way there, totally planning on meeting his needs. My dh is, um, well he's not very perceptive all the time on needs and how to solve them. He's not with ds as much, so when they're doing preferred things and things are fine they're fine. But if ds has support needs (he's going to melt down, he needs a break, he needs food, he needs help self-advocating, he's frustrated, he's in pain, he's whatever), not everyone is oh yeah gonna figure that out. So I have to plan things out and have plans for who he's with, who's meeting his needs. If everything is going swimmingly, it might be fine. But one glitch and that support hole will be obvious.

It's not you. It means he needs support. And it's hard. And it stinks. But tomorrow is a new day. Apologize that you didn't anticipate his needs (even though it's not your fault, it's the autism's fault, but you need to help him feel better), help him verbalize how he felt, put numbers to each parameter if you want (on a scale of 1-10 how anxious were you, how hard was the sensory to deal with, how curious were you, etc.). Find some good things too, because you want him to go back. On a scale of 1-10, how interesting would the weapons have been if you could have stayed. On a scale of 1-10 how interesting would the food have been if you could have stayed (or the relatives or the...). Find some good things so that you can say wow let's try to make some plans and strategies so we can bring it more into reach for next time so you can do the things you wanted to do. You don't have to stay the whole time, but we'd like you to be able to do the things *you* wanted to do. That kind of empowerment and collaborative problem-solving can be good. 

My ds is old enough now that I try to problem solve with him. I ask him upfront what he will need in x situation. We'll talk about what happen and think up things he might have to deal with. Like what if he gets there and he doesn't like the food or it's noisy or he's tired or he needs a break or he's just done but I'm not or he's bored or there's waiting or... And we usually take a bag. And we usually have significant contingency plans.

Reality is, if the event is important to ME, then I need someone assigned to him who can meet his needs and even help him leave if that's the best strategy. It sounds like this event was more important to you, so it was an emotional loss for you too not to get to stay and not to have those plans. It's ok to grieve that, and it sucks. Are there back-ups or other gatherings or maybe smaller gatherings you can try before this one rolls around again? I'd probably do it more, not less, but I'd go into it as a problem solving thing.

I've been taking my ds to Disney this year on and off. We've been with friends, with my dad, with my mother and her dh, with just ourselves. My ds' best trips are with just me. He really requires support and flexibility. Now we've had tons of fun with the people we've gone with, and we can make it work, yes! But we've had some pretty dangerous mess-ups and meltdowns and problems too that came because I screwed up. So that's how I came to my internal rules like if it's important to ME then he has to have another person he's assigned to. If we're going in a group, he has to have someone he's assigned to. I'm not gonna stop taking him places, because these places are good! It just takes extra work.

Were there any consequences? Like did it offend someone or make you miss important meetings or leave him so frustrated he says he won't go back? Definitely let him cool down a while. Definitely find something good to say, like you're proud that he didn't (whatever behavior) when he was so frustrated, that you're proud that he (asked for help, quietly expressed his need, waited even when he was frustrated, whatever) instead. Find some things to praise and smooth it over. Start again. 

I don't think it's about being perfect. I think it's really about a relationship of integrity. Their elephant memories make it hard if you don't keep that relationship right, and it's a little bit unexpected to have that collaborative, problem solving relationship. Most people view parenting as control, but with these kids sometimes collaboration and just being honest and apologetic goes a long way. You can do it. 

[Guest]

NorthernBeth, hugs. Events like that (lots of people, loud music, etc.) were challenging for both my two, especially my youngest. There are places with high sensory stimulation that he is still not ready for, but we are getting there gradually. I have used the process of gradual exposure also known as desensitization. I'll suggest a book for you to look at. 

Overcoming Anxiety in Children and Teens by Jed Baker

https://www.amazon.com/Overcoming-Anxiety-Children-Teens-Baker/dp/1941765149/ref=sr_1_4?ie=UTF8&qid=1529705148&sr=8-4&keywords=Jed+baker&dpID=51aFwS5Jj2L&preST=_SY291_BO1,204,203,200_QL40_&dpSrc=srch

He describes the approach very well (it is actually pretty simple and exactly as it sounds) and uses multiple case studies as examples. The same author has other good titles like No More Meltdowns, where you can find lots of strategies for different situations.

I'm so sorry no one will listen! It took a while to find someone to listen here as well. I just kept changing family doctors until I found one that listened and gave us the appropriate referrals. But things are so much different in the Territories. I'm sorry! 

[Guest]

14 minutes ago, happysmileylady said:

 A poster above me has a quote in her siggie that says "a child may have a disorder or set of problems but he is not he disorder."  

The quote is from Dr. Stanley Greenspan, founder of the DIRFloortime approach. The quote is mentioned in the link below. I am linking it so it can be seen in the exact context that Dr. Greenspan meant it to be.

https://www.stanleygreenspan.com/portal/greenspan-floortime-what-it-really-2

[NorthernBeth]

Thank-you for listening.  It was one of those weird moments where I just seemed to "forget"  all the issues we have.I keep thinking--- he used to be so happy   - he used to love events.  But today I stopped and was really thinking it through-- okay-- did he actually like the "event"  -- or just the chance to run around with lots of other kids and eat some food?Becuase really maybe I was enjoying the event and he was just enjoying running. 

     

4 hours ago, PeterPan said:

Reality is, if the event is important to ME, then I need someone assigned to him who can meet his needs and even help him leave if that's the best strategy. It sounds like this event was more important to you, so it was an emotional loss for you too not to get to stay and not to have those plans. It's ok to grieve that, and it sucks.

Yeah- apparently it was definitely more important to me!!  I just don't want him to grow up and  be like.... "man I missed out on learning about my culture because I lived with non-natives" .  I do miss doing events-- seeing other people with their families and how excited their kids are...... I wish we had that. 

I don't think we offended anyone or him.   He just hated the drums ( which were huge!  and constantly beating), and nothing else was interesting enough to him. to try to overcome the sound issues.  He is often more or less uninterested in a lot of things.  

I keep thinking we will be fine because I mention it to him and he acts like we are fine and then we get to whatever activity and he is suddenly flipping out.  I think I need to develop some sort of routine pre-debriefing, but I am not sure what. Moved On,  I will check out those books you mentioned, and see if they will help me. 

On the up side, today when he mentioned he was scared to go to school because he thought it would be noisy, I was able to go in, talk to the school staff, get a rough schedule of events and discuss his concerns and they suggested a couple of different options to reduce noise levels.  He initially said he still wouldn't go , but after about half an hour of completely ignoring the topic and just letting him play, he suddenly announced that it was time to go to school!   And off he went just fine.  

4 hours ago, PeterPan said:

It might sound trite, but it was a really big deal to me when I finally had a psych say yes, let's bump him to ASD2, that his support level is *2*, meaning he requires substantial support. Those numbers are NOT severity level, and it's a really common misunderstanding. They're support levels. That support level explains why I struggle to take my ds with disabilities AND another person with disabilities places at the same time. In just one of those odd things in life, I have multiple people in my life (adults) who also have support needs that I like to do things with. But when my ds is along, I need one person assigned to the adult with disabilities and one person assigned to ds, end of discussion. And that person assigned to him has to be all the way there, totally planning on meeting his needs. My dh is, um, well he's not very perceptive all the time on needs and how to solve them. He's not with ds as much, so when they're doing preferred things and things are fine they're fine. But if ds has support needs (he's going to melt down, he needs a break, he needs food, he needs help self-advocating, he's frustrated, he's in pain, he's whatever), not everyone is oh yeah gonna figure that out. So I have to plan things out and have plans for who he's with, who's meeting his needs. If everything is going swimmingly, it might be fine. But one glitch and that support hole will be obvious.

Yes, this.  Doctors keep going " why are you pursuing this... he is too old for services....."  But first-- he is not too old to get extra services at school, and second, because it seems like it is becoming MORE of a problem, not less of one.  And I am tired of feeling like I am seeing things.  And if you give me a diagnosis-- I will go to town on that thing, I will read and study and research and then maybe I have a chance to figure out how to help him with the stuff that drags him down and ruins a perfectly good day.  School has been insanely stressful and caused a bunch of self-harm-y behaviours and then a couple of weeks ago we were afraid his birth mom might die and that was horribly stressful and triggered off a few meltdowns.  ( although , it loooks like she is getting better thankfully)  

I finally have an appointment next week to see the psych. who said he will do the ADOS.  I have no idea if he will pass or fail.  I feel pretty anxious about it all. ( or really terrified!!!)    He can sometimes keep it together really well.  Like, on a really good day, people would wonder what on earth I was worrying about! When he is trying to be polite, he has this lovely formal "polite" voice and manner,  he uses which adults seem to adore.   In which case, they might be like-- oh yeah he is fine!!        ( Although he hates doctors so much, they often see his worst behaviour.)   The pediatrician that visits from about 5 hours away finally agreed to see us more often while we try to get the meds straightened out, so that is a huge relief because the emergency room didn't want to touch it and the doctors at the only practice in town originally didn't want to touch it either!   Grrrrrr!!!!!

  Today is finally the last day of school for the year, so hopefully that stress will calm down.  Just reading over the report card, is kind of bittersweet.  For example, his teacher wrote:   "   ( DS..... struggles to enter into conversations he is interested in.  He will linger by or listen intently but is unsure how to engage.  He is unaware of how people react when interested or not interested by their body language....:)   uhm.... yeah that sounds like my guy......but at least he is trying!!!! 

5 hours ago, PeterPan said:

I think it's really about a relationship of integrity. Their elephant memories make it hard if you don't keep that relationship right, and it's a little bit unexpected to have that collaborative, problem solving relationship. Most people view parenting as control, but with these kids sometimes collaboration and just being honest and apologetic goes a long way. You can do it.

Yes, exactly--- he can remember every mistake I ever made and can hold a grudge like no one's business.  People often think I am being "easy" on him.  I try not to spoil him.... but he is not a kid you can run over roughshod.... he HAS to have some measure of control or he absolutely can not handle it.  

[NorthernBeth]

36 minutes ago, happysmileylady said:

Here's the thing.  Every kid is different.  Even those with diagnosis.  A poster above me has a quote in her siggie that says "a child may have a disorder or set of problems but he is not he disorder."  

Regardless of a kid's diagnosis, every kid and situation is different.

 

My DD7 has an ASD diagosis.  "Too Loud" doesn't exist in her vocabulary.  Loud sounds, bright lights, lots of colors, she would have THRIVED in the environment you descibe.

 

So much so that she might have wandered off to explore all of that.  And that's OUR challenge.  Making there is an eyeball on her at all times.  She has no safety awareness.  She knows no strangers.   And yet, she can't really be understood either  "Hey, how did you do that pretty colors for that clothes there?"  But, an arena full of drum beats and beautiful colorful costumes....she would have LIT UP.  Has lit up.  

 

It's not about denial of issues......it's about dealing with the issues you have..............................and not dealing with the issues you don't have.  

Yeah this is more what he was like about 4 -5 years ago, which is maybe why I keep getting caught by surprise.  Although he would often melt down after big events even then, so maybe it was still stressful but kind of compelling?  At the recommendation of our speech pathologist, we are also getting his hearing tested as he seems to mention noise issues so much lately and we are seeing a lot of "mis-hearings"  or confusion over similar sounding words.  We had him tested when he was around 4 and they said he was right on the borderline for hearing consonants correctly.  But he has had a LOT of ear infections over the years.  We are wondering if maybe he has some fluid in there that is making it a bit tricky to hear clearly-- and might make hearing a lot of noise at once ( like in a busy school auditorium) almost unbearable.  So maybe we will find some useful information there.

I feel like I keep "forgetting" the difficulties.  Or he has a great day or a great conversation with me or problem-solves something, and I think "phew..... we are going to be okay , he is learning how to deal with this...."  And then he falls apart again over something small, and I realize it is just not that easy.  Maybe that is why I want a diagnosis?   So it is finally "real" to me, and not just .......... Him having another bad day "out of nowhere"  when REALLY,  ...... I should have predicted it.... I should have seen it coming!!!!!

[Guest]

It's good to hear that a psych will be running the ADOS. It's a step in the right direction at least.

[Guest]

I wanted to add here that we go to places that are of interest to my 9 year old and we prepare him on the challenges that we may face. We talk about it, watch videos (people upload tons of stuff on YouTube), envision how the day will go, decide what to take with us, and how to deal with unexpected challenges.

Just because your son had that reaction it does not mean he did not want to go. It may just mean that his sensory issues may be more heightened at this age (he is entering puberty). Sensory issues can vary at different ages and for different people. Talking to him is the best way to figure out how he felt and how to go about approaching different situations like this in the future.

I wish you all the best,

M

[caedmyn]

I have no personal experience with this as my sensory seeker doesn't mind noise, in fact tends to be revved up by lots of noise and activity...but is there any way he could wear earplugs or noise cancelling headphones (maybe there's a low profile version?) to something like that if he does want to go but is overwhelmed by the noise?

[NorthernBeth]

1 hour ago, caedmyn said:

I have no personal experience with this as my sensory seeker doesn't mind noise, in fact tends to be revved up by lots of noise and activity...but is there any way he could wear earplugs or noise cancelling headphones (maybe there's a low profile version?) to something like that if he does want to go but is overwhelmed by the noise?

yeah we were trying to encourage that, but he refused.  we have been wondering about maybe getting a little mp3 player so he could listen to some music to counteract??? But not sure if that will work.  He does wear them for assemblies at school apparently.  

[NorthernBeth]

1 hour ago, Moved On said:

wanted to add here that we go to places that are of interest to my 9 year old and we prepare him on the challenges that we may face. We talk about it, watch videos (people upload tons of stuff on YouTube), envision how the day will go, decide what to take with us, and how to deal with unexpected challenges.

Just because your son had that reaction it does not mean he did not want to go. It may just mean that his sensory issues may be more heightened at this age (he is entering puberty). Sensory issues can vary at different ages and for different people. Talking to him is the best way to figure out how he felt and how to go about approaching different situations like this in the future.

I wish you all the best,

Yes, I am begining to realize this may be the level of prep we may need.  Is it horrible to admit this is a litlle overwhelming to me?  I have been doing this for "hard" things like going back to school, but didn't think of it for something "fun".  ( Although truthfully we seem to be going through a period where nothing seems to be fun or interesting to him.  Not sure if this is puberty or social anxiety.)   

Do you plan these things out in a journal or planner , or just keep it all in your head??  I am trying to think about how to be more organized about this so we have less surprises.   He really has a lot of trouble anticipating / or communicating what he finds hard.  I do a lot of guessing.  He often gets very agitated when I try to discuss it with him.

  I didn't realize puberty might affect sensory issues!   

Thank-you to everybody who has been contributing ideas.  I keep thinking the professionals are going to help us figure things out more,  and I guess just tell me what to do, what will be best.  

I guess maybe it is not that cut and dried, eh?

[PeterPan]

3 hours ago, NorthernBeth said:

Thank-you for listening.  It was one of those weird moments where I just seemed to "forget"  all the issues we have.I keep thinking--- he used to be so happy   - he used to love events.  But today I stopped and was really thinking it through-- okay-- did he actually like the "event"  -- or just the chance to run around with lots of other kids and eat some food?Becuase really maybe I was enjoying the event and he was just enjoying running. 

     

Yeah- apparently it was definitely more important to me!!  I just don't want him to grow up and  be like.... "man I missed out on learning about my culture because I lived with non-natives" .  I do miss doing events-- seeing other people with their families and how excited their kids are...... I wish we had that. 

I don't think we offended anyone or him.   He just hated the drums ( which were huge!  and constantly beating), and nothing else was interesting enough to him. to try to overcome the sound issues.  He is often more or less uninterested in a lot of things.  

I keep thinking we will be fine because I mention it to him and he acts like we are fine and then we get to whatever activity and he is suddenly flipping out.  I think I need to develop some sort of routine pre-debriefing, but I am not sure what. Moved On,  I will check out those books you mentioned, and see if they will help me. 

On the up side, today when he mentioned he was scared to go to school because he thought it would be noisy, I was able to go in, talk to the school staff, get a rough schedule of events and discuss his concerns and they suggested a couple of different options to reduce noise levels.  He initially said he still wouldn't go , but after about half an hour of completely ignoring the topic and just letting him play, he suddenly announced that it was time to go to school!   And off he went just fine.  

Yes, this.  Doctors keep going " why are you pursuing this... he is too old for services....."  But first-- he is not too old to get extra services at school, and second, because it seems like it is becoming MORE of a problem, not less of one.  And I am tired of feeling like I am seeing things.  And if you give me a diagnosis-- I will go to town on that thing, I will read and study and research and then maybe I have a chance to figure out how to help him with the stuff that drags him down and ruins a perfectly good day.  School has been insanely stressful and caused a bunch of self-harm-y behaviours and then a couple of weeks ago we were afraid his birth mom might die and that was horribly stressful and triggered off a few meltdowns.  ( although , it loooks like she is getting better thankfully)  

I finally have an appointment next week to see the psych. who said he will do the ADOS.  I have no idea if he will pass or fail.  I feel pretty anxious about it all. ( or really terrified!!!)    He can sometimes keep it together really well.  Like, on a really good day, people would wonder what on earth I was worrying about! When he is trying to be polite, he has this lovely formal "polite" voice and manner,  he uses which adults seem to adore.   In which case, they might be like-- oh yeah he is fine!!        ( Although he hates doctors so much, they often see his worst behaviour.)   The pediatrician that visits from about 5 hours away finally agreed to see us more often while we try to get the meds straightened out, so that is a huge relief because the emergency room didn't want to touch it and the doctors at the only practice in town originally didn't want to touch it either!   Grrrrrr!!!!!

  Today is finally the last day of school for the year, so hopefully that stress will calm down.  Just reading over the report card, is kind of bittersweet.  For example, his teacher wrote:   "   ( DS..... struggles to enter into conversations he is interested in.  He will linger by or listen intently but is unsure how to engage.  He is unaware of how people react when interested or not interested by their body language....:)   uhm.... yeah that sounds like my guy......but at least he is trying!!!! 

Yes, exactly--- he can remember every mistake I ever made and can hold a grudge like no one's business.  People often think I am being "easy" on him.  I try not to spoil him.... but he is not a kid you can run over roughshod.... he HAS to have some measure of control or he absolutely can not handle it.  

I don't think it's a problem for him to enjoy the event on the level he's ready to enjoy the event. If for him it's a pleasure to be there, running around, and if being outside and in nature and enjoying the outdoors is part of it, then he's been enjoying it at the level he was ready to enjoy it. We all grow, and maybe some years he's ready to interact a little more or notice another part. It might be something where you pre-learn about an aspect he might like to notice, like weapons or food or shoes or whatever. You might buy him that thing ahead, so then he can go with that thing and share his and get noticed and have something to talk about, a way to connect. He might not know how to connect, even though they're his people, so maybe he needs that help to bridge. And he might like that continuity and dependability of routine too, like every year I go and I wear my special shoes and my shirt and my new whatever.

That's exciting that you're going to get the ADOS. I hope it's helpful. You never know, but it's worth a try.

I think as far as him saying he'll be fine and then flipping out, that's because it unexpectedly maxed out his ability to cope. He's telling you he would cope if he could cope. He's just getting maxed out. Happens to adults, happens to kids. It just happens.

Yeah, my ds is like that about social skills group. I think it's the power of routine. And maybe that's a good sign, if he's going willingly...

You could watch videos for Color My Conversation and see if you get any ideas.

On the mistakes and forgiving thing, that might be something to read books about and talk about. It shows his social thinking deficits, because he probably forgives his OWN failings but not others'. ;)  

Yes, the need for the control is very spectrum. He's so anxious and finding it so hard that it's hard to trust and let someone else lead. You can practice taking turns on things and practice who is in charge. It's a really helpful skill and will make him easier to play with and work with. Like play brief games (3-5 minutes) and take turns choosing. 

[PeterPan]

1 hour ago, NorthernBeth said:

yeah we were trying to encourage that, but he refused.  we have been wondering about maybe getting a little mp3 player so he could listen to some music to counteract??? But not sure if that will work.  He does wear them for assemblies at school apparently.  

You can put earbuds with the music under noise-canceling headphones, yes. I have swanky Bose ones ($$$) too, but for ds we usually just use the $17 cheapies plus earbuds underneath. 

Also giving them a place to turtle into can help. A stroller with a canopy, a sweatshirt with a hoodie, that kind of thing. 

[Guest]

8 hours ago, NorthernBeth said:

Yes, I am begining to realize this may be the level of prep we may need.  Is it horrible to admit this is a litlle overwhelming to me?  I have been doing this for "hard" things like going back to school, but didn't think of it for something "fun".  ( Although truthfully we seem to be going through a period where nothing seems to be fun or interesting to him.  Not sure if this is puberty or social anxiety.)   

Do you plan these things out in a journal or planner , or just keep it all in your head??  I am trying to think about how to be more organized about this so we have less surprises.   He really has a lot of trouble anticipating / or communicating what he finds hard.  I do a lot of guessing.  He often gets very agitated when I try to discuss it with him.

  I didn't realize puberty might affect sensory issues!   

Thank-you to everybody who has been contributing ideas.  I keep thinking the professionals are going to help us figure things out more,  and I guess just tell me what to do, what will be best.  

I guess maybe it is not that cut and dried, eh?

NorthernBeth, could you do me a favor?

1. Take a few deep breaths
2. Remember not to keep beating yourself up over everthing. You are human and we are not perfect.
3. Keep in mind that none of us, on here, other autism/ ADHD parents, or the therapists, have everything figured out. Like Happysmileylady said before, every child is different and things can change as they grow. This is why it is so important to include the child when trying to find strategies; especially at this age. 

 

 I will copy paste something from No More Meltdowns that you may find useful.

Quote

Steps for Creating Self-Calming Strategies

1. When they are focused and calm, talk with them about how they know when they are getting upset. Help them identify internal cues for these feelings. Write them down or draw them. If they are going to self-calm, they will need to know when they are getting angry before they reach a full-blown meltdown.
2. Talk with them about things that soothe and calm them. Make an agreement to practice these calming strategies so they can use them when they are upset. The list might include:    

•  Taking deep breaths    
• Counting to 10    
• Taking a walk    
• Getting a drink of water, or sucking on ice cubes  
•  Chewing on a straw or gum    
• Drawing    
• Listening to music

• Reading

• Watching TV    

• Athletic activities    

• Holding a favorite toy,

• squeeze ball, or stuffed animal    

• Rocking in a rocking chair    

• Swinging on a swingset

3. Create a plan for home and school indicating which calming strategies they will use.

4. Decide whom they will talk with to discuss how to solve the problem once they are calm.

5. Each day for several months, have the child imagine the sensations of anger and rehearse the calming strategy. He will have to be able to do the calming strategy without too much conscious effort, because he may have difficulty thinking as he is beginning to get angry. Parents can rehearse their home strategy each morning or after school. Teachers can have their students rehearse their calming plan every morning five minutes before class begins. The form on the following page can be used to help you create a general calming plan for your child.

Baker, Jed. No More Meltdowns: Positive Strategies for Managing and Preventing Out-Of-Control Behavior (pp. 42-43). Future Horizons. Kindle Edition. 

 

You asked if I have a written plan. No, I do not write out a plan for our outings/ trips (I do if we are working on a specific goal but not for fun time). 

The point of how I approach this is to familiarize my son with the destination (that is usually a place that relates to his interests ,passions, or that he has chosen himself) and what will be going on there (I try to use videos to make the experience more real to him). The other point is to work out what he will be taking with him and what strategies he wants to use if he feels that things are overwhelming to him. I don't get hung up on always following the same strategy because he is a lot tike me, and we like change. It's just the way he and I are. So he has a list of several that he will usually pick from.  

About the noise cancelling headphones, my son will wear them at home when we are running the vacuum, but he does not like to have them on when we are outdoors. I have never pushed. As someone with sensory issues myself, I focused more on desensitizing rather than covering up things that were a challenge. In life, when they are out there on their own in university, at work, whatever... there are just so many different sensory experiences you cannot anticipate or avoid! I want them to have the best life and experiences that they can and be able to function. This is why I desensitize.

[Guest]

Just to let you know that I edited my previous post numerous times because I got too specific about what I/ we do and the point is for you to find what works best for your family and your child.

[kbutton]

On 6/22/2018 at 10:15 PM, NorthernBeth said:

Yes, I am begining to realize this may be the level of prep we may need.  Is it horrible to admit this is a litlle overwhelming to me?  I have been doing this for "hard" things like going back to school, but didn't think of it for something "fun".  ( Although truthfully we seem to be going through a period where nothing seems to be fun or interesting to him.  Not sure if this is puberty or social anxiety.)   

Do you plan these things out in a journal or planner , or just keep it all in your head??  I am trying to think about how to be more organized about this so we have less surprises.   He really has a lot of trouble anticipating / or communicating what he finds hard.  I do a lot of guessing.  He often gets very agitated when I try to discuss it with him.

5

You might check out a Carol Grey Social Stories book. It might not be what you need, but it might give you a sense of what you could use to prep him. I think one of the important things is the "I" language in the social stories. It helps internalize things. So, if he can internalize "I can do x when y happens" vs. you saying "do x when y happens," it can make a big difference in whether he wants to use a particular coping mechanism or whether he thinks about it being for him. 

[NorthernBeth]

You know, I think I have one of her books from when we were tackling some other issues. I will have to dig it up again.  I hadn't realized at the time the difference the point of view might make.   That kind of helps in general when dealing with him, too, possibly.  

 

[Guest]

Carol Gray's social stories' approach is what we use as well. I have just incorporated the concepts in the way we prepare.

Another thing I have always emphasized with my kids is to observe how other kids behave is a setting, what is socially acceptable behavior and what isn't, and how to tackle what is overwhelming.

My oldest did not have the level of sensory issues that my youngest has, so with my youngest it has been more gradual. We have been to places that were too overwhelming for my youngest and he and I would walk off to a quieter place while my oldest stayed with dad. I would then ask my youngest if we could try again. Even if it was just for 5 minutes! That was fine! It has helped him build on desensitizing in various environments. Now, he will ask to go to places that I know he is not ready for, so I tell him we will build on his level of tolerance until he is ready. 

The social stories have been extremely helpful for building social skills, but other approaches are needed for the sensory. That is something an OT skilled in sensory integration could work on.

[Guest]

We also use Jed Baker's Social Skills Picture books. I have found them to be complementary to Carol Gray's approach.

[Guest]

NorthernBeth, a couple of articles on sensory processing disorder you may find useful, since you asked about age and sensory issues. 

Sensory Processing Disorder (WebMD):

https://www.webmd.com/children/sensory-processing-disorder#3

Sensory Processing Disorder: It's Not... Something You Outgrow: 

https://www.spdstar.org/node/1134

Without services, I have had to read tons of books and educate myself. I have developed my own approach for/ with my own kids combining what I have read and my own common sense, personality, and style. I also use tons of materials that we have had to buy out-of-pocket.

I hope you can get the correct diagnosis for your son and appropriate services. If not, know that there are tons of books on the market these days to help you along the way.

I wish you and your boy all the best,

M  

ETA: I am telling you this because situations are different in each place, and you can't always get the desired or needed services. 

[NorthernBeth]

Thank- you Moved On.  Yeah, we actually moved because we were told we would be able to access better services off reserve.  It hasn't really happened the way it sounded like it would.  I seem to be doing a lot more of it myself than what the professionals implied. It has been very hard to access services here.  Very eye-opening and discouraging at the same time.  It is not even really a money issue-- just not enough people doing the job, so you just go on these crazy long wait lists.    Thank-you for the specific suggestions of books that helped.  Sometimes I am just reading like crazy trying to figure out what will actually work.  

[Guest]

Here, we could have enrolled as homeshoolers for the autism funding given to the schools (per child), only, I would not have any say on what services they decide they want to send my son for.  The documentation did say they would take my input into consideration. Ummmm, no thank you! They usually pick the services closer to your home to reduce costs and what is closer to our home (a small city 20 minutes away) does not have anything I feel my son needs. And, subpar services, just for the school to get the funding? Yaaaah... thanks, I'll pass! Any equipment they buy for the child to use (laptop, tablet, whatever) gets returned to the school and they use whatever funding is left over at the end of the year on other students. I don't even have the right to say, I would like to use the remaining funding for something I want him to use. Long story! I read the agreement before signing, highlighted my concerns, discussed it with my husband, and we both decided to pass. 

We are about 2 hours away from the major city, by the way. We have approved funding for both boys with the autism diagnoses. There are other places about an hour away, but I have had trouble getting them to work with us on the scheduling (among other issues I have come across) and they are so swamped that they don't care to work with you to find solutions. They have a long list of people waiting for the services with severe kids so they don't care. The younger kids get a good sum in annual funding because they don't have the school system yet, so they focus on the younger kids and early intervention, more. 

Anyway, these are our issues. Yes, very eye-opening and discouraging! My stress level from dealing with all these people went through the roof. It's why I let a couple of months pass and then try again. I am very particular about what i want too, though, so that is another issue. Some don't like working with parents that have opinions about what their child needs or know more through research. 

You and your boy will be in my thoughts,

M

[Guest]

4 hours ago, NorthernBeth said:

Sometimes I am just reading like crazy trying to figure out what will actually work.  

 

After more than 6 years (I started my research about a year before my boys were first diagnosed) of reading and researching, I am still at it. It's never ending but it has paid off, and I am sure it will continue to pay off.  You have probably noticed that as well. Anything I can learn to help my children is always time well spent. That's my motto ?

Hugs to you,

M

[4KookieKids]

I made this mistake too, and it blew up in my face this week. Kids' grandparents offered to pay for them to go to camp, so I signed the older two up for the short YMCA day camp - it's only 9-3 for five days, unlike most of their day camps (which are 7am-5pm for school age children), and I talked with the teachers/staff ahead of time and thought I was good. Kids managed to hold it together while actually *at* camp, and completely  lost it once I picked them up. My worst mistake - knowing they'd be tired, but that they often do better while out and about - was deciding we'd while away the extra time from 3-5 before dinner at the pool after I picked them up. So no expectations, just fun... But it was raining outside, so everyone that was there to swim outdoors was indoors, and it was so loud and crowded. My ASD kiddo handled it just fine, surprisingly, and only melted down once we left, but my introverted, highly anxious kiddo with major sensory issues spent the entire time at the pool sobbing, screaming, raging, kicking, etc.  It was awful. and so, so sad. I wanted to cry and hug her, but she wouldn't let me touch her. I felt like the worst parent ever. Finally, we had to pack the other three kids up and just leave, with her still screaming bloody murder and the others all crying because their pool time got cut short.

i don’t drink but this was enough to make me consider starting...

[NorthernBeth]

Yes!    Man, have we ever had those excursions!   The thing about holding it together while people are around-- but losing it once they are gone is,  I think what caused us so many problems at school.  He can fake it for awhile-- but not forever!  We are still working on learning how to advocate for what he needs in the moment, rather than after-the-fact to me five hours after whatever bothered him at school.    I also find this is really hard to explain to friends who want to invite us along to "fun" events, that I know he won't find that fun .   

And the combination of sensory issues plus anxiety????   Ahhhhhhh--- kills us all the time.   I dont' even notice whatever little thing is bugging him, and he is meanwhile being driven crazy by it and not saying anything in his efforts to be good or appear normal-- and then completely loses it when he can't take anymore.  

[ktgrok]

Just wanted to ask f you ever saw the Parenthood episode where the Dad takes Max to the amusement park? Worth watching. 

[Guest]

5 hours ago, NorthernBeth said:

And the combination of sensory issues plus anxiety???? 

The anxiety is often the product of sensory issues, when sensory issues are present.

[4KookieKids]

1 hour ago, Moved On said:

The anxiety is often the product of sensory issues, when sensory issues are present.

Yes, I feel like it's sometimes a chicken or egg question... ? Sorting through details is tricky!

[Guest]

48 minutes ago, 4KookieKids said:

Yes, I feel like it's sometimes a chicken or egg question... ? Sorting through details is tricky!

There are various types of anxiety and CBT has been the most successful treatment. However, when the anxiety is related to the sensory, if the sensory is treated, the cause for the anxiety no longer exists. It was why my sons do/ did not qualify for an anxiety diagnosis. They do not exhibit signs of clinical anxiety. Now, a person can have sensory issues on top of other forms of anxiety, and that is an entirely different story. My kids do not have social anxiety, for example. Put them in a challenging situation with high sensory and it is a different story, especially for my youngest. The people are not the issue, just the noise, especially combined sounds.

Deal with the cause and you get better outcomes. Deal with the effects and you will be dealing with regressions/ recurrence. The psychs are there to help you sort it out. You don't have to figure things out on your own.

[4KookieKids]

1 hour ago, Moved On said:

There are various types of anxiety and CBT has been the most successful treatment. However, when the anxiety is related to the sensory, if the sensory is treated, the cause for the anxiety no longer exists. It was why my sons do/ did not qualify for an anxiety diagnosis. They do not exhibit signs of clinical anxiety. Now, a person can have sensory issues on top of other forms of anxiety, and that is an entirely different story. My kids do not have social anxiety, for example. Put them in a challenging situation with high sensory and it is a different story, especially for my youngest. The people are not the issue, just the noise, especially combined sounds.

Deal with the cause and you get better outcomes. Deal with the effects and you will be dealing with regressions/ recurrence. The psychs are there to help you sort it out. You don't have to figure things out on your own.

 

Yes, we've just not had great luck with psychs ever since our trusted one retired at the end of last year. Now we've had folks (psychs/neuropsychs) suggest everything from anxiety, depression, adhd, and bipolar to "just" sensory or frustrated brilliance (very gifted but dyslexic). She shows *tons* of sensory issues, but we haven't gotten her in for it yet, because, well, insurance. And an older sibling with significant needs as well. So for now, we're making do with the behavioral stuff with/from the psych (one we actually like and who tends to fall on the sensory/frustrated brilliance side of things) and the dyslexia remediation, and waiting on the OT. We have seen significant improvements with dyslexia therapy and beginning violin, but it's obvious that there are still sensory issues at play that need to be addressed before I even consider having her evaluated for adhd or bipolar.

[Guest]

Hugs. It's rough! I hope you can get things figured out.

Most of what I know has come from reading and running what I know by professionals that are well versed and not intimidated or offended by a parent that educates themselves. It was the type of discussions I had with the last neuropsych. It was great bouncing my personal observations off of her and discussing some of my book/ research knowledge. Helped me confirm certain things. 

[ktgrok]

On 6/27/2018 at 9:10 PM, Moved On said:

There are various types of anxiety and CBT has been the most successful treatment. However, when the anxiety is related to the sensory, if the sensory is treated, the cause for the anxiety no longer exists. It was why my sons do/ did not qualify for an anxiety diagnosis. They do not exhibit signs of clinical anxiety. Now, a person can have sensory issues on top of other forms of anxiety, and that is an entirely different story. My kids do not have social anxiety, for example. Put them in a challenging situation with high sensory and it is a different story, especially for my youngest. The people are not the issue, just the noise, especially combined sounds.

Deal with the cause and you get better outcomes. Deal with the effects and you will be dealing with regressions/ recurrence. The psychs are there to help you sort it out. You don't have to figure things out on your own.

And then there is ADHD, which can also produce anxiety symptoms! Turns out most of my social anxiety was from not recognizing/remembering names/faces, and knowing I'd forget or be late to events. Oh, and a total inability to prioritize stuff, including my own thoughts. On meds that went away and i started enjoying social stuff! My doctor said it's often a matter of figuring out if the anxiety is triggered by ADHD, or if the ADHD symptoms are caused by underlying anxiety/depression. Tricky stuff. 

[Guest]

Ktgrok, first off, you seem to be confusing the ADHD label with common comorbidities of ADHD. I will quote something for you in order to list them:

Quote

Go to:

Adult ADHD and Comorbidities

Many adults with ADHD also have co-occurring psychiatric disorders, including anxiety (47%), mood (38%), impulse control (20%), and substance use disorders (SUD, 15%).¹ Symptoms of ADHD can be concealed by more robust symptoms of these co-occurring conditions. Conversely, comorbid anxiety and learning disorders can be obfuscated by more obvious ADHD symptoms.

Some comorbid disorders may be a direct reflection of the impact of ADHD symptoms; for example, poor academic achievement owing to ADHD may lead to anxiety. Additionally, other frequently co-occurring conditions, such as depression, share common environmental risk factors with ADHD.⁵

Comorbidities may differ in frequency between adults and children with ADHD. Adults with ADHD are more likely than children to have one or more anxiety disorders, SUD, personality disorder, and social phobia, but children are more likely to have comorbid oppositional disorder and separation anxiety.⁶

Adults with undiagnosed ADHD and comorbidities are likely to seek treatment because of problems associated with a co-occurring disorder, not because of ADHD symptoms. Further, the presence of comorbid psychiatric conditions can affect the presentation and course of ADHD and may require treatment independent from that of ADHD. Therefore, clinicians should screen patients with ADHD for other DSM-IV disorders as well as assess patients with other DSM-IV disorders for ADHD.

Found here (US National Library of Medicine):

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2660162/

But these are comorbidities, not part of the symptomatology of ADHD. This means that some may have one or more of these but not everyone will. They are separate labels just like my sons have ASD/ ADHD and Asperger's/ ADHD. As the quote mentions, some of the comorbidities may have been influenced by the ADHD, but that will not always be the case. Anxiety is often an independent diagnosis. 

Now, did you notice what was missing from the comorbidities? Yes, the facial recognition. This is commonly called Prosopagnosia and is also a separate diagnosis. Here's some information on it:

Quote

Prosopagnosia is a neurological disorder characterized by the inability to recognize faces.  Prosopagnosia is also known as face blindness or facial agnosia.  The term prosopagnosia comes from the Greek words for “face” and “lack of knowledge.”   Depending upon the degree of impairment, some people with prosopagnosia may only have difficulty recognizing a familiar face; others will be unable to discriminate between unknown faces, while still others may not even be able to distinguish a face as being different from an object.  Some people with the disorder are unable to recognize their own face.  Prosopagnosia is not related to memory dysfunction, memory loss, impaired vision, or learning disabilities.  Prosopagnosia is thought to be the result of abnormalities, damage, or impairment in the right fusiform gyrus, a fold in the brain that appears to coordinate the neural systems that control facial perception and memory.  Prosopagnosia can result from stroke, traumatic brain injury, or certain neurodegenerative diseases.  In some cases it is a congenital disorder, present at birth in the absence of any brain damage.  Congenital prosopagnosia appears to run in families, which makes it likely to be the result of a genetic mutation or deletion.  Some degree of prosopagnosia is often present in children with autism and Asperger’s syndrome, and may be the cause of their impaired social development. 

Found here (National Institute of Neurological Disorders and Stroke):

https://www.ninds.nih.gov/Disorders/All-Disorders/Prosopagnosia-Information-Page

Prosopagnosia is something I have done some research on. I first came across it being linked to autism in the book A Different Kind of Boy by Dan Mont (the father of an autistic boy with prosopagnosia):

https://www.amazon.com/Different-Kind-Boy-Fathers-Raising-ebook/dp/B00368CB3W/ref=sr_1_1?ie=UTF8&qid=1530415867&sr=8-1&keywords=a+different+kind+of+boy

You can see the other causes in the quote. It does not appear to be linked in any way to ADHD.

[Guest]

nm

[ktgrok]

Perhaps I was unclear? I wasn't saying anxiety was a symptom of ADHD as much as sometimes it can be triggered by the ADHD and IF that is the case, would be resolved by addressing the ADHD. Again, I'm pretty sure I said "sometimes". And the opposite can be true, where  depression and anxiety can cause a mental fog and  symptoms that look similar to ADHD but clear up when the depression and anxiety are addressed. 

More clear?

And yes, I'm aware of face blindness, I have a mild/moderate level of it, as does my father, sister, and eldest son. However, it is exacerbated by short term memory issues and lack of ability to focus on the person. And as I said I also couldn't remember their names, not even half a second after they said them. On meds, I can. I honestly was so excited by this discovery that while at the social event with my husband I texted three separate people to share the news, lol. "I remembered names!!!!" 

Being able to remember someone's name, and better focus on them as they speak so that I can try to figure out some memorable features, was huge in relieving a lot of my social anxiety. After all, why bother meeting people if you know you will never remember their name? I felt that way about a lot of things...why bother trying to budget if you will never stick with it, why bother starting a project if you know you will never finish it, etc. Meds changed that and gave me a huge confidence boost. 

I'm not saying everyone should take them, or that they are free of side effects, or that they are a miracle cure. I'm saying that for some people, they are life changing in ways you wouldn't expect. 

[Guest]

20 hours ago, Ktgrok said:

And then there is ADHD, which can also produce anxiety symptoms! Turns out most of my social anxiety was from not recognizing/remembering names/faces, and knowing I'd forget or be late to events. Oh, and a total inability to prioritize stuff, including my own thoughts. On meds that went away and i started enjoying social stuff! My doctor said it's often a matter of figuring out if the anxiety is triggered by ADHD, or if the ADHD symptoms are caused by underlying anxiety/depression. Tricky stuff. 

I wasn't trying to be combative but now you are making it feel that way. Here's your post. The way you move through what you are trying to say, you are making it appear like all these things were connected to the ADHD. Some are some are not. I didn't want there to be any confusion so I clarified certain things. 

I did not comment on the second half of your post or your experience with meds. That is your experience and your right to share it. Yet, your last post is making it appear like I was in some way judging you or criticizing your experience. Not the case!

[ktgrok]

2 hours ago, Moved On said:

I wasn't trying to be combative but now you are making it feel that way. Here's your post. The way you move through what you are trying to say, you are making it appear like all these things were connected to the ADHD. Some are some are not. I didn't want there to be any confusion so I clarified certain things. 

I did not comment on the second half of your post or your experience with meds. That is your experience and your right to share it. Yet, your last post is making it appear like I was in some way judging you or criticizing your experience. Not the case!

Everything but the facial recognition seems to be ADHD related, and the ADHD also impacts my ability to focus long enough on a face, and my working memory, so it also was impacting, but not causing, the face blindness. 

Again, probably a matter of me being too brief when baby is needing my attention. But yes, I felt like you were lecturing me on things I did not need to be lectured on ?

[Guest]

Ktgrok, every case is different and anxiety is a separate often comorbid label to ADHD. Does the ADHD exacerbate the anxiety? Lacking in personal experience but inferring based on what I know, I am sure that in some cases it does. I was just clarifying things for those reading that may not know while including supporting evidence. Every case is different, and ADHD is just as much a spectrum as autism.

And, no, I was not lecturing you. It may appear that way to some, but in reality, I am more concerned about what messages the readers lurking (which is the majority on this board) are receiving and how accurate these messages are. Nothing personal, I can assure you!

[ktgrok]

1 hour ago, Moved On said:

Ktgrok, every case is different and anxiety is a separate often comorbid label to ADHD. Does the ADHD exacerbate the anxiety? Lacking in personal experience but inferring based on what I know, I am sure that in some cases it does. I was just clarifying things for those reading that may not know while including supporting evidence. Every case is different, and ADHD is just as much a spectrum as autism.

And, no, I was not lecturing you. It may appear that way to some, but in reality, I am more concerned about what messages the readers lurking (which is the majority on this board) are receiving and how accurate these messages are. Nothing personal, I can assure you!

Fair enough. I was sharing both personal experience and what my doctor told me, that when a patient presents with symptoms of both it is important to suss out if one is causing the symptoms of the other. That's all.