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Behavioral evaluation rescheduled...


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#1 mamashark

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Posted 20 November 2017 - 10:33 AM

So we had a behavioral evaluation for our son (turns 5 in January) scheduled for August, but it got canceled for a couple reasons... then his behavior began to improve so we put off rescheduling. I'm reaching a breaking point again as his behavior is spiraling down again, and am waiting for a call back to get on the schedule for mid January. 

 

I am struggling with feeling like I'm failing at this somehow. In church yesterday he didn't want to go to his class at all, I had to physically carry him (and unpry his fingers from the door jam) into his class, then we sat in the corner of the room, him on my lap unresponsive. The last 10 minutes of class I was able to get him to the table to do the craft. 

 

He then later in the morning had a complete melt-down and shut down unresponsive again. Grunting, and turning angrily away from anyone who said anything to him. He stayed curled in a ball on the floor under the chairs in church for probably 20 minutes, until the band started up (and we had brass up front this Sunday, and he loves watching the brass players) so he stood watching, keeping his distance from any contact with me. 

 

And this is typical behavior again. I feel like I walk on egg-shells all the time, never knowing when the next issue will happen, and am at a loss for how to manage the behavior. 

 

I'm reading the book Freeing Your Child From Anxiety by Tamar Chansky, but only having small success with it.

 

I just don't understand why the behavior had begun to improve, and now we're spiraling downward again. My husband and I have racked our brains to find anything that we changed - but the downward spiral started related to NOTHING. not the time change (which happened several weeks later), not candy from halloween (which was again a good week or so later), no changes in diet, no change in routine, no change in belongings, no change in siblings, no change in teachers at church, no change in sleep habits, no change in clothing (we figured out he doesn't like polyester and changed to 100% cotton, but several weeks after the downward spiral started). 

 

 *sigh* I guess we just need to have the evaluation done. 



#2 freesia

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Posted 20 November 2017 - 11:09 AM

((Hugs)) have it done. It's okay. It should only help you and give you some strategies to help him (and you).
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#3 PeterPan

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Posted 20 November 2017 - 12:26 PM

Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism)

 

Is this with a clinic that can actually diagnose autism? It's hard when there are long waits. :(

 

Technically your ped can diagnose and get you a referral for a behaviorist. Around here, we can get a BCBA/behaviorist to come to our home. Some BCBAs work under psychs and can help you sort through diagnosis that way too. For us, it was really helpful to have someone in our home. It got over that hurdle of having someone only see him for snapshots in novel situations and not knowing what it was REALLY LIKE with him.

 

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Edited by OhElizabeth, 20 November 2017 - 12:28 PM.


#4 PeterPan

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Posted 20 November 2017 - 12:31 PM

He sounds pretty overwhelmed, frankly. Even if he's done the activity before, if he has a growth spurt or realizes the demands are challenging and he's feeling overwhelmed, he'll begin to pull away. 

 

It's only going to get harder. You definitely want to be pursuing evals. Btdt. Sometimes my ds is amazing, and sometimes it's like OH MY LANDS.

 

Mom trick. I give him Calm Child (herbal tincture) before things, and that takes the edge off enough that he can usually do it. I also build in high motivators and increase supports. It takes time to pair. We were JUST getting church working better, then they decided to "graduate" him and change the teachers and tell him, grrr. He still hasn't gone back. But at least he sits in church now, nicely. The biting has calmed down and he'll just use his bag and his strategies. 

 

Anything involving waiting can be hard. Anything where the language demands exceed his ability to participate can be hard. So like in the main service he was struggling, and it was half music, stuff he couldn't understand. They now get us the songs ahead so we can pre-teach, which helps.

 

This is a long-term thing, so you definitely want evals and want help. You might get on waiting lists for more places and then cancel if you get into something sooner.



#5 PeterPan

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Posted 20 November 2017 - 12:40 PM

Sorry to ramble on here. How was his behavior *after* church? My ds used to come home and be under tables, in closets, really stressed and frazzled. For us, that wasn't worth it. We decided to take a really non-confrontational, pairing approach. We bring in tons of supports, have really clear demands (we're going to sit in this one service, I don't want to have to leave, this is the consequence if we have to leave, if you bite me or hit me we will have to leave), and just get through it. It has taken 6-9 months, but he's gradually chilling. Now he can go to the service, sit through it using his bag, stay calm, and come home and be calm. No under tables, no stressed out, no flapping and fleeing and bolting. So that's really good! 

 

So look at the picture as a whole and bend a lot of rules. My ds has a really nice, high value church bag. Like I put a gallon bag of legos in there. I don't care if no other kid takes a gallon of legos into church, lol. My kid does, because that's the support he needs right now to stay calm and pair and associate it with good things. And I take really, really high value food treats. A behaviorist will look for motivators for your ds to see what motivates him. My ds is very food motivated, so a high value treat is very powerful. I'll even take 3-4 treats. Like a tub of special treats (cereal cups for $1) AND pieces of candy to dole out AND cookies/donuts afterward for in the car AND a treat in the car on the way to church AND a starter treat for when he's in the service before the singing starts. For real. 

 

For my ds, we had to ramp up the supports that high to get him calmed down. Then, as he's gotten more comfortable, we've been able to fade some of it. LIke he doesn't have to have the in car snacks both ways every time now. I'm still likely to do it, but it's more like fun surprise rather than MUST, if that makes sense.

 

Church is really, really hard. It's not enough to win and get his butt in the door, because then it's all paired with negativity. When my ds went through his drop everything phase, we decided to let him. Then, after a few months, we slowly worked on adding things back at his tolerance. He has ASKED, as in initiated for himself, to go to something at church. That was a shocker! Now it was really hard and language-based, meaning I'm not sure how much it's his reality. We're trying. We have a few weeks off with the holidays, and then it will resume. But I'm just saying that goal of peacefulness *can* work for some kids. 

 

Before, when he was going to SS, what worked was to say he could choose to be with me that day or go to the class. I had hoped he would pair with some of the kids, but we never got it to work out. Some of the kids he likes who like him aren't there regularly enough for that to work. Pairing him with a worker or a buddy can be a strong technique.



#6 TracyP

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Posted 20 November 2017 - 01:17 PM


 

I just don't understand why the behavior had begun to improve, and now we're spiraling downward again. My husband and I have racked our brains to find anything that we changed - but the downward spiral started related to NOTHING. not the time change (which happened several weeks later), not candy from halloween (which was again a good week or so later), no changes in diet, no change in routine, no change in belongings, no change in siblings, no change in teachers at church, no change in sleep habits, no change in clothing (we figured out he doesn't like polyester and changed to 100% cotton, but several weeks after the downward spiral started). 

 

 *sigh* I guess we just need to have the evaluation done. 

 

Have you ever heard of disequilibrium as a developmental stage? I learned about it ages ago when my oldest was in early childhood classes. I've never heard of it anywhere else in the 12(?) years since and it might be nonsense, but I feel like it has been true with my own kids. This link explains it.

 

That's not to say that you shouldn't pursue an evaluation. I only thought it might offer an explanation for where this "out of nowhere" behavior came from.

 

 



#7 mamashark

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Posted 20 November 2017 - 02:12 PM

Yes, it is my understanding that this clinic can diagnose Autism, as well as other issues. They have behaviorists on staff, as well as psychologists and a variety of therapy/ABA/etc. available including the ability to come to our home if necessary. I will look for other good places and see what their waiting list looks like as well - thanks for the book recommendation.

 

Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism)

 

Is this with a clinic that can actually diagnose autism? It's hard when there are long waits. :(

 

Technically your ped can diagnose and get you a referral for a behaviorist. Around here, we can get a BCBA/behaviorist to come to our home. Some BCBAs work under psychs and can help you sort through diagnosis that way too. For us, it was really helpful to have someone in our home. It got over that hurdle of having someone only see him for snapshots in novel situations and not knowing what it was REALLY LIKE with him.

 

SaveSave

 

Thank you for these tricks - I'll look into that tincture! 

He sounds pretty overwhelmed, frankly. Even if he's done the activity before, if he has a growth spurt or realizes the demands are challenging and he's feeling overwhelmed, he'll begin to pull away. 

 

It's only going to get harder. You definitely want to be pursuing evals. Btdt. Sometimes my ds is amazing, and sometimes it's like OH MY LANDS.

 

Mom trick. I give him Calm Child (herbal tincture) before things, and that takes the edge off enough that he can usually do it. I also build in high motivators and increase supports. It takes time to pair. We were JUST getting church working better, then they decided to "graduate" him and change the teachers and tell him, grrr. He still hasn't gone back. But at least he sits in church now, nicely. The biting has calmed down and he'll just use his bag and his strategies. 

 

Anything involving waiting can be hard. Anything where the language demands exceed his ability to participate can be hard. So like in the main service he was struggling, and it was half music, stuff he couldn't understand. They now get us the songs ahead so we can pre-teach, which helps.

 

This is a long-term thing, so you definitely want evals and want help. You might get on waiting lists for more places and then cancel if you get into something sooner.

 

After church he was exhausted. He wasn't throwing fits, but was tired and needed down time. He is like this after most outings, but always more so after church. We pack a bag of matchbox cars and he plays contentedly with them ... I was feeling frustrated with that this past Sunday, because sitting on the floor playing instead of going to class was categorizing me as the crazy lax mom who can't get her kid to go to class. No one says that or criticizes me, but I guess that's why getting a diagnosis would help, then I'd have an "excuse" so to speak, to bend the rules. And I'd feel better about bending them. I hate that nagging feeling that I'm being so lax with him that it's allowing the behaviors. (This is my MILs opinion and things got REALLY heated when I brought up the possibility of an evaluation - this was months and months ago.) I'm to a point now where I know we have to own this as parents, and I'm ready for professional help to do so.

Sorry to ramble on here. How was his behavior *after* church? My ds used to come home and be under tables, in closets, really stressed and frazzled. For us, that wasn't worth it. We decided to take a really non-confrontational, pairing approach. We bring in tons of supports, have really clear demands (we're going to sit in this one service, I don't want to have to leave, this is the consequence if we have to leave, if you bite me or hit me we will have to leave), and just get through it. It has taken 6-9 months, but he's gradually chilling. Now he can go to the service, sit through it using his bag, stay calm, and come home and be calm. No under tables, no stressed out, no flapping and fleeing and bolting. So that's really good! 

 

So look at the picture as a whole and bend a lot of rules. My ds has a really nice, high value church bag. Like I put a gallon bag of legos in there. I don't care if no other kid takes a gallon of legos into church, lol. My kid does, because that's the support he needs right now to stay calm and pair and associate it with good things. And I take really, really high value food treats. A behaviorist will look for motivators for your ds to see what motivates him. My ds is very food motivated, so a high value treat is very powerful. I'll even take 3-4 treats. Like a tub of special treats (cereal cups for $1) AND pieces of candy to dole out AND cookies/donuts afterward for in the car AND a treat in the car on the way to church AND a starter treat for when he's in the service before the singing starts. For real. 

 

For my ds, we had to ramp up the supports that high to get him calmed down. Then, as he's gotten more comfortable, we've been able to fade some of it. LIke he doesn't have to have the in car snacks both ways every time now. I'm still likely to do it, but it's more like fun surprise rather than MUST, if that makes sense.

 

Church is really, really hard. It's not enough to win and get his butt in the door, because then it's all paired with negativity. When my ds went through his drop everything phase, we decided to let him. Then, after a few months, we slowly worked on adding things back at his tolerance. He has ASKED, as in initiated for himself, to go to something at church. That was a shocker! Now it was really hard and language-based, meaning I'm not sure how much it's his reality. We're trying. We have a few weeks off with the holidays, and then it will resume. But I'm just saying that goal of peacefulness *can* work for some kids. 

 

Before, when he was going to SS, what worked was to say he could choose to be with me that day or go to the class. I had hoped he would pair with some of the kids, but we never got it to work out. Some of the kids he likes who like him aren't there regularly enough for that to work. Pairing him with a worker or a buddy can be a strong technique.

 


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#8 PeterPan

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Posted 20 November 2017 - 04:21 PM

Yes, it's a journey and really hard dealing with the public stuff. It's really hard the first time you use the A word. It won't make you feel any better, but now if my ds has behaviors, as a 9 yo, nobody thinks I'm a bad parent. They get that 9 yos don't act that way unless they have issues. Like I took him to the hairdresser today to get a haircut, and I didn't have to say oh he has autism. They just get it, even with ASD1. Now he's high end of ASD1, mayby into ASD2. Maybe if we got him re-eval'd they'd push him up to 2. But definitely high end of 1 by everyone's numbers and assessment. There just comes a point where the discrepancy is obvious, where people will stop giving you a hard time.

 

Um, what did we do when he was little? I don't know. I have no advice there. I can tell you that the most reasonable thing for you to do right now is offer support. Autism needs support and he'll be assigned a support level. So it's RIGHT for you to give him support, and it's not breaking the rules or anything else. You're doing what he clearly needs, giving him support. You might take more things. If those matchbox cars are preferred, that's stellar! You could have cars in a few sizes or find some fidget toys that have spinning parts. Like whatever it is about the cars that really make them good for him, find those aspects in some other things, so you'll have more. 

 

I'm finding some things to be a losing game. Like at what expense is he in Sunday School? Does he fit in? Is he learning? Does he understand? They don't want my 9 yo in a K5er class, and yet that's what he would understand. They put him in with 3rd-6th graders in Awana. I'm not sure he wants to go back. Even though he could sorta keep up academically, it doesn't FIT him. But being in with uber littles doesn't always fit either. He's across the worlds, neither one nor the other. In general, he does better with younger kids. I could take him back and have him go with the younger Awana class. I was actually really frustrated, because the boys I wanted him to make friends with were in that younger class, boys he could have been great with. And the boys in this age-appropriate class are not going to enjoy him.

 

So at what cost do you fight it, kwim? I can dream of giving my ds a connected sense of community and continuity, but is that REALLY going to happen? Maybe just being somewhere and being peaceful and honest is good enough. If we can sit with honesty in the main service, then maybe it's good enough. Or maybe I fight to get him put in the lower class. But people hear his obvious verbal IQ and go oh my, put him up higher! And they don't get that he only parrots, that he has no clue, that he's working so hard that it's wearing him out.

 

Supports are the right thing to do, definitely. And good for you for getting solid on how to handle the inlaws. They raised their kids and this one is your call, your responsibility. At this point, I'll just tell you though, don't be shying away and canceling. I get it, and I'm just saying you've got the pattern that says it's time. There's no need to doubt what you're seeing or waffle. My boy, ON A GOOD DAY, is diagnosable. I kid you not. Like I was so afraid when the behaviorist came the first time, because he was having a good day (for him) and I thought wow we'll never get answers at this rate! Nope.  :lol:  :lol:  :lol:

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Edited by OhElizabeth, 20 November 2017 - 04:22 PM.

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#9 Zinnia

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Posted 21 November 2017 - 07:30 AM

Have you ever heard of disequilibrium as a developmental stage? I learned about it ages ago when my oldest was in early childhood classes. I've never heard of it anywhere else in the 12(?) years since and it might be nonsense, but I feel like it has been true with my own kids. This link explains it.

That's not to say that you shouldn't pursue an evaluation. I only thought it might offer an explanation for where this "out of nowhere" behavior came from.


This has been true for my kids, too, especially one of them. We have often described it as the growing pains before an emotional growth spurt. We will go through this really awful period, where you think tgis might be the one that kills you/drives you to insanity, then, boom, a breakthrough and a huge, noticeable jump in maturity
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#10 Zinnia

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Posted 21 November 2017 - 07:35 AM

I don't have kids with autism, but I do have 2 that have had very challenging behavior in ebbs and flows over the years. So, maybe not the exact experience, but I can relate to having a 5 year old in church because he just could not go to Sunday School, to hiding under tables, etc. I had a 9 year old completely melt down yesterday after 2 days with cousins.

You are not alone. You are not the only person to have ever dealt with this. You are not a bad parent. You are not a bad mother. Your MIL and those words she said are not right. You are the right mother for your son, and yuou will figure this out, even if at times it feels like you never will.
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#11 ktgrok

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Posted 21 November 2017 - 09:32 AM

oh honey, my heart hurts reading this. You did NOT cause this. You are not the lax mom. Man have I been there...feeling that way. Heck, still happens. But you are doing what YOUR child needs. 

 

And I HATE that church is hard. It is. Our low point was when DS (before diagnosis) sucker punched a random stranger in line for communion. We never went back to that church!  

 

But I did the WRONG thing I think, and stopped taking him, rather than work out how to accommodate him. He now is an agnostic and I have a lot of regrets. Maybe he would have been agnostic anyway, but I will never know. I wish I'd done whatever it took, including bringing toys, sitting in the back, snacks, whatever it took. 

 

He also didn't participate in sunday school, until I started teaching his class myself. But then I decided I needed a break and stopped. Sigh. And I DID need a break, but that meant he stopped going. 

 

Anyway, probably nothing triggered this other than growth, hormone fluctuations, etc. It just is. Hugs. 


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#12 mamashark

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Posted 21 November 2017 - 12:35 PM

Thank you, this is very encouraging!

 

 

oh honey, my heart hurts reading this. You did NOT cause this. You are not the lax mom. Man have I been there...feeling that way. Heck, still happens. But you are doing what YOUR child needs. 

 

And I HATE that church is hard. It is. Our low point was when DS (before diagnosis) sucker punched a random stranger in line for communion. We never went back to that church!  

 

But I did the WRONG thing I think, and stopped taking him, rather than work out how to accommodate him. He now is an agnostic and I have a lot of regrets. Maybe he would have been agnostic anyway, but I will never know. I wish I'd done whatever it took, including bringing toys, sitting in the back, snacks, whatever it took. 

 

He also didn't participate in sunday school, until I started teaching his class myself. But then I decided I needed a break and stopped. Sigh. And I DID need a break, but that meant he stopped going. 

 

Anyway, probably nothing triggered this other than growth, hormone fluctuations, etc. It just is. Hugs. 

 



#13 ktgrok

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Posted 21 November 2017 - 02:48 PM

Feel free, the next time your son is acting up at church, to remember my son punching someone and think "at least my kid isn't THAT bad!"

 

LOL, my good friend and I have a deal. She thinks of my punching the strange story when her 4 kids are at church causing mayhem, and I think about the time one of her kids, at a funeral, knocked over the paten of communion wafers while making a dash for the coffin. She had to decide wether to try to catch the consecrated host or stop him from desecrating a body, lol.