Hi, Jaki. Welcome to the SN area of MDC. nothing else to add...

 

Hi Jaki,

How are they addressing his behavior at school? And are you getting any in-home support like respite or home consultations?

 

Hey, I have an 11yo daughter about where your Jovan is. She wasn't nonverbal anymore, but we have reached an adolescent regression, and things are getting ugly here. SO I know exactly what you mean. We homeschool, which has reduced her aggression and frustration quite a bit, although I'd like to work on getting some sort of respite care during the day. sigh.

My oldest is 14, and has aspergers.

 

Hello!

I have a DD with the dx of PDD-NOS maybe Asperger's but she's too young for such a dx. She's considered high-functioning.
Biomedical treatments like a special diet and supplements have been helpful for us. If you need any info on those things, do let me know.

 

Quote:

Originally Posted by PikkuMyy Hi Jaki, How are they addressing his behavior at school? And are you getting any in-home support like respite or home consultations?

Hi Shannon, thanks for replying.

At school, they give him sensory breaks anytime he needs it. They will also remove him from the classroom if there's too much stimulation, such as when another student is upset. He also wear a weighted vest all day and receives cranial sacral from his OT therapist. What can be frustrating for us (and I'm sure Jovan as well), is that there doesn't seem to be any rhyme or reason to his outbursts. He can be perfectly fine one moment and swing into a full-fledged tantrum in the next. He's on medications as well to help.

Resources are very limited in our area. There's only one (?!?) respite agency in our county with a very long waiting list. We're on that list, however, we were told that we have to find a respite worker on our own that would be willing to undergo their 20 hour training (without pay). We've asked and begged many people/resources already without success yet. I think our next step will be to place an ad on craigslist or similar because we definitely need more help then we're getting.

 

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Originally Posted by Multimomma Hey, I have an 11yo daughter about where your Jovan is. She wasn't nonverbal anymore, but we have reached an adolescent regression, and things are getting ugly here. SO I know exactly what you mean. We homeschool, which has reduced her aggression and frustration quite a bit, although I'd like to work on getting some sort of respite care during the day. sigh. My oldest is 14, and has aspergers.

Hi Multimomma, I'm so sorry to hear about your daughters regression.

Do you know if anything set off her regression? Does she still have any verbal left? Have you found anything that helps distract or redirect her during aggressive outbursts?

I hope you get the respite care you need soon.

Hang in there,
Jaki

 

Quote:

Originally Posted by BookGoddess Hello! I have a DD with the dx of PDD-NOS maybe Asperger's but she's too young for such a dx. She's considered high-functioning. Biomedical treatments like a special diet and supplements have been helpful for us. If you need any info on those things, do let me know.

Hi there, thanks for replying!

Jovan was under the care of the Pfeiffer Institute in Naperville, IL in which treatment is focused on biomedical/neurotoxins. He was on a gluten/casein free diet for almost a year. Long story shorter, Jovan is such a picky eater (there's basically three foods he'll eat) he lost a LOT of weight on this diet and we weren't seeing much difference in his behavior or skills. I don't know if we didn't give it enough time, or we were doing something wrong, but unfortunately it didn't seem to work for us. However, we're still very open to try other biomedical/neurotoxins treatments - anything if it would help.

 

My second son has Mod Autism and is 15
my third son is Aspergers and is 13

Hello! and *hugs*

 

I have a former student who sounds smiliar to your Jovan - I'll call him Greg. He's 11 going on 12 and has similar sensory needs, is starting to go through puberty, has very radical emotional swings, and is on medication to help with it. His family also tried a variety of biomedical approaches without any success. He isn't nonverbal but he is only able to make simple requests, often 1 word but sometimes sentences that he's memorized. He communicates with PECS as well as sometimes with words.

A few thoughts:

-as I understand them, weighted vests are not meant to be worn all the time. I have no idea what Jovan's history is with them, but my understanding is that it's best to wear them for 30-60 minutes at a time with breaks in between. By having him wear than for shorter periods, it gives his body a chance to respond to the pressure each time, and also allows him to request the vest and look forward to wearing it multiple times during the day.

-Has the school tried a variety of different pressure garments? Greg responded best to the pressure vests made of a neoprene material with velcro on the side, rather than the thick fabric with weights in it. The pressure vests provide a much more even amount of compression, all around the torso.

-Do you have anywhere at home where you could install a fabric swing? Greg's parents put a big hook into the ceiling in his bedroom and through that hook they thread a long piece of very firm nylon stretch material that gets tied and becomes a swing/hammock. Greg responds really well to this activity when he's feeling the need for more pressure. Sometimes he just curls up in it, and other times he likes to swing.

-How much of the sensory breaks in the classroom are preventative versus reactive? I've had great success with students having behavior issues in the classroom by changing the schedule and teacher's method so that the majority of sensory activities become preventative rather than reacting. Many classrooms would wait for a student to hit overload before providing a sensory break and when we switched it so that they built breaks and sensory activities into the schedule, timing them based on the activities and activity level in the classroom (noise, movement, etc.) it made a huge difference for the students.

-I think it's really important for you to get some respite at home. I can't believe the program requires respite caregivers to take 20 hours of unpaid training before they start. That's a big commitment on their part. The county that I worked in had an agency that simply provided the administrative parts of the program. Parents found a caregiver on their own, who signed up with the agency as an employee, took the background checks, etc. and then could start right away. And while I know that you definitely want qualified people working with children with special needs, if parents can find a qualified person on their own, there should be some sort of experience-based waiver for the training. How frustrating! On the other hand, I think it's really important for parents to get breaks, and if I were in your shoes, I would definitely be posting ads on CL or at any local colleges looking for someone in the field who'd like to do it. I don't know your financial situation, but if it were me, I'd figure out how to pay the person at least some money for the training (since they also get the training out of it) and that way then you'll have free care after that. Are you in touch with any parent support groups? Perhaps you could find another family that's also looking to get respite care and go halfsies on paying a good babysitter to undergo the training and then both families get care.

 

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Originally Posted by Jaki Hi Multimomma, I'm so sorry to hear about your daughters regression. Do you know if anything set off her regression? Does she still have any verbal left? Have you found anything that helps distract or redirect her during aggressive outbursts? I hope you get the respite care you need soon. Hang in there, Jaki

Jaki,
It is VERY common to have regression at puberty, our psych said "It's so common they've been writing about it as long as they have been writing about autism!" It's called adolescent regression of autism. The flood of hormones just totally disrupts their brain, sensory processing, verbal abilities, any coping.

She has some verbal ability left, she can answer yes/no questions, and has some of her verbal stims. But she's not sharing like she had been for five or six years.

I would definitely push the school for a functional behavior analysis. No behavior comes out of 'nowhere', and I'd bet he's just stressed from noise, from unpredictable schedule changes, and lack of reward. With Bre, she would save up her frustration as well, so if a kid was being loud at 8am, at noon the ticking of the clock would set her off. She would be set off by the street cleaners if they came by the school on her speech therapy day (lots of work and stress, and the noise was too much)

 

Multimomma - very good point about the overload of hormones + sensory input.

Greg also had had much higher skills before I met him, and now I wonder whether his puberty had just started earlier, like 8-9 rather than later. He started to have really bothersome (for him) erections at 9, so I bet the hormones had started earlier. He used to have much more verbal language and could do a lot more activities independently.

Also a good suggestion to do a functional behavior analysis and really examine how the day is structured for him.

 

Hi Jaki! Welcome to the SNP forum!

 

Thank you for your well thought out response, it's given me much to think over! I apologize for the messy format, I just wanted to respond directly to your suggestions.

Quote:

Originally Posted by PikkuMyy I have a former student who sounds smiliar to your Jovan - I'll call him Greg. He's 11 going on 12 and has similar sensory needs, is starting to go through puberty, has very radical emotional swings, and is on medication to help with it. His family also tried a variety of biomedical approaches without any success. He isn't nonverbal but he is only able to make simple requests, often 1 word but sometimes sentences that he's memorized. He communicates with PECS as well as sometimes with words. A few thoughts: -as I understand them, weighted vests are not meant to be worn all the time. I have no idea what Jovan's history is with them, but my understanding is that it's best to wear them for 30-60 minutes at a time with breaks in between. By having him wear than for shorter periods, it gives his body a chance to respond to the pressure each time, and also allows him to request the vest and look forward to wearing it multiple times during the day. ***They give him breaks with the vest, I apologize for not elaborating earlier. He'll generally wear it for about 40 minutes, then get a 20-30 minute break. Then it's usually back on. -Has the school tried a variety of different pressure garments? Greg responded best to the pressure vests made of a neoprene material with velcro on the side, rather than the thick fabric with weights in it. The pressure vests provide a much more even amount of compression, all around the torso. ***This is an excellent point. They use the fabric type vest. I even wonder if he would respond better to other types of weighting too, such as a blanket or cape. I will definitely bring this up with his teacher. -Do you have anywhere at home where you could install a fabric swing? Greg's parents put a big hook into the ceiling in his bedroom and through that hook they thread a long piece of very firm nylon stretch material that gets tied and becomes a swing/hammock. Greg responds really well to this activity when he's feeling the need for more pressure. Sometimes he just curls up in it, and other times he likes to swing. ***We've had the 'Rainy Day' swing installed for years until he outgrew it. My husband then had the good idea to install a heavy duty outdoor swing (for playsets) in a door frame with extra studs to support it. I hope this makes sense.. Jovan loves his swing and it's been a great tool at home. At school, they unfortunately don't have room for one and I know he misses that sensory break there. -How much of the sensory breaks in the classroom are preventative versus reactive? I've had great success with students having behavior issues in the classroom by changing the schedule and teacher's method so that the majority of sensory activities become preventative rather than reacting. Many classrooms would wait for a student to hit overload before providing a sensory break and when we switched it so that they built breaks and sensory activities into the schedule, timing them based on the activities and activity level in the classroom (noise, movement, etc.) it made a huge difference for the students. ***Well, they claim at school it's 50/50, but I'm beginning to believe otherwise. His teacher records all his daily activities/schedule and incidents daliy for me and the pattern I see for sensory breaks seems to be more reactive. In his IEP, it states he should have a break every 15 minutes and that's what the teacher tells me they're doing, but I sometimes think they might have the attitude of, 'He seems ok right now, so why bother' - IYKWIM? -I think it's really important for you to get some respite at home. I can't believe the program requires respite caregivers to take 20 hours of unpaid training before they start. That's a big commitment on their part. The county that I worked in had an agency that simply provided the administrative parts of the program. Parents found a caregiver on their own, who signed up with the agency as an employee, took the background checks, etc. and then could start right away. And while I know that you definitely want qualified people working with children with special needs, if parents can find a qualified person on their own, there should be some sort of experience-based waiver for the training. How frustrating! On the other hand, I think it's really important for parents to get breaks, and if I were in your shoes, I would definitely be posting ads on CL or at any local colleges looking for someone in the field who'd like to do it. I don't know your financial situation, but if it were me, I'd figure out how to pay the person at least some money for the training (since they also get the training out of it) and that way then you'll have free care after that. Are you in touch with any parent support groups? Perhaps you could find another family that's also looking to get respite care and go halfsies on paying a good babysitter to undergo the training and then both families get care.

****I think this is another excellent idea for going in with another family and to help pay for training. I (and many others by me) agree that 20 hours of training is excessive, especially since they won't be compensated for their time. My case worker at this agency (Countryside) argued the reasons were that they become employees of their company and all staff must be fully trained. I could be mistaken here, but I think I heard somewhere this is a state (IL) standard across the board.

Thanks again for your ideas, I truly appreciate it much.

 

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Originally Posted by smibbo My second son has Mod Autism and is 15 my third son is Aspergers and is 13 Hello! and *hugs*

Hi there and thanks for the warm welcome!

:

 

Quote:

Originally Posted by Multimomma Jaki, It is VERY common to have regression at puberty, our psych said "It's so common they've been writing about it as long as they have been writing about autism!" It's called adolescent regression of autism. The flood of hormones just totally disrupts their brain, sensory processing, verbal abilities, any coping. She has some verbal ability left, she can answer yes/no questions, and has some of her verbal stims. But she's not sharing like she had been for five or six years. I would definitely push the school for a functional behavior analysis. No behavior comes out of 'nowhere', and I'd bet he's just stressed from noise, from unpredictable schedule changes, and lack of reward. With Bre, she would save up her frustration as well, so if a kid was being loud at 8am, at noon the ticking of the clock would set her off. She would be set off by the street cleaners if they came by the school on her speech therapy day (lots of work and stress, and the noise was too much)

The puberty thing makes perfect sense. For some reason, we're having a hard time convincing his teacher that's what kicked off his regression. She'll listen to us (and his neurologist report), but she'll still make comments occasionally that make it seem that he's just copying the other children his class. :sigh:
We've had quite a few issues with his school lately..

ITA his aggression doesn't come out of nowhere, we're just having a difficult time pin-pointing it. A behavior analysis is scheduled to attend Jovan in his class on March 17th which we hope will clarify a lot of things.

 

Hi Jaki, welcome to MDC! My son (13) has Asperger's. Social skills are a challenge, and we've had some behavior issues since puberty hit, though I expect many children, whether they're on the spectrum or not, develope behavior issues around puberty time. Not that I wish my son's life was any harder than it is right now, but sometimes, I wish he was either "normal" or "more autistic", because everyone expects him to be a "normal" child, act "normal" and have "normal" reactions, even familiy members sometimes. Does that make any sense or does that just sound dumb?

 

Quote:

Originally Posted by harleyhalfmoon Hi Jaki, welcome to MDC! My son (13) has Asperger's. Social skills are a challenge, and we've had some behavior issues since puberty hit, though I expect many children, whether they're on the spectrum or not, develope behavior issues around puberty time. Not that I wish my son's life was any harder than it is right now, but sometimes, I wish he was either "normal" or "more autistic", because everyone expects him to be a "normal" child, act "normal" and have "normal" reactions, even familiy members sometimes. Does that make any sense or does that just sound dumb?

Hi there!

: No, that makes perfect sense to me. I feel the same way sometimes about Ellis. It's kinda' like being stuck in no mans land sometimes, ya know? Because our children look perfectly 'normal' people don't get there's a disability, or in our case (and I'm sure in many others), he's just not being a 'bad boy'.

 

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Originally Posted by Jaki Hi there! : No, that makes perfect sense to me. I feel the same way sometimes about Ellis. It's kinda' like being stuck in no mans land sometimes, ya know? Because our children look perfectly 'normal' people don't get there's a disability, or in our case (and I'm sure in many others), he's just not being a 'bad boy'.

Yup! And that's we're "spoiling" them or "catering to" them, because we have to use a different approach! Or if we only "pushed them hard enough" or "made" them do something, then they'd automatically "get with the program".

Gee, if that's ALL it took, why didn't I think of that?

 

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Originally Posted by harleyhalfmoon Yup! And that's we're "spoiling" them or "catering to" them, because we have to use a different approach! Or if we only "pushed them hard enough" or "made" them do something, then they'd automatically "get with the program". Gee, if that's ALL it took, why didn't I think of that?

Exactly! Some of the advice we've gotten over the years are downright laughable or disturbing - we've even had a couple people suggest we give our kids 'regular spankings' !?!

We had an ex-teacher who put Ellis in time out whenever he spoke out of turn. I think some people just refuse to ever get it.

 

Welcome to MDC Jaki

I guess we are in the same boat...

My son will be 11 next week and was officially Dxed with Asperger's, severe generalized anxiety and the fabulous one-two combo of gifted with specific learning disablilties last September. Until early last year, he was "quirky", but bright and quiet so he got along alright in most situations. I hate to admit it, but because he is fairly smart and was non disruptive, his odd behavior was ignored by both us and the school for a long time. This year has been a total disaster. His behavior has really gotten bad and his anxiety is through the roof.

We tried fish oil suppliments which showed no obvious outward improvement... but DS did say he felt like he could think more clearly. I kept a food diary for what felt like forever, and cannot seem to find any connection between food and behavior. We live in a more "rural" area, and there are not many services at all. For his counseling sessions, there is a clinic once a month locally... but otherwise we drive an hour. I have no idea what else to try or do.

Harley- I feel the exact same way!