Help! What should I try next with Jason?

[JTsMom]

I haven't done a Jason update in a while, so I'll try to get as much info down in as few words as possible.

-Still doing Speech and OT, once every other week. Recently tested on the low end of normal for speech, but still does some echoing and I still have concerns. His therapist thinks he won't be in therapy much longer- I disagree.

Both therapists and I have been trying like crazy to figure out exactly what is going on with Jason. They say he is a huge puzzle, and they are kind of at a loss. They also say that I've tried everything they have come up with so far, and that they don't know how I'm handling all of it, since they would have lost it by now. (Not saying that to toot my own horn- just so you know how serious this is.)

We have tried all types of behavior mod strategies, therapeutic listening, more structured schedule, etc. with no real results.

-We had an eval done by a neuropsych at Children's. Jason was having a very good day that day, so I think that kind of skewed things. However, he feels that J's challenges/delays are mostly cardiac related, with a possible ADHD component (family history). He says that J's difficulties are very much right brain related, and that his verbal abilities are a relative strength. He feels strongly that J is NOT autistic, although I stressed the things that have raised red flags for me- like the echolalia, obsessions, etc.

-We started a pre-school like PMO program at the YMCA 3 weeks ago. It is 2 mornings a week (4 hours), and they do lots of physical activities with some more structured activities (show and tell, circle time, etc.). The director's son is very much like Jason, from the heart condition, to the behavior difficulities. She is trying very hard to make this work, and both she and the teachers are very open to suggestions. I specifically chose this program b/c it wasn't nearly as structured as the state's full day pre-k, and b/c academically, I have very few concerns- Jason is starting to read a little even, and I very loosely and casually do some homeschool type stuff with him. I had hoped to send him to a regular, public K next year.

So there's some recent background.

------------------------------------------------
Ok, so having said all of that, I just got off the phone with the director, and she let me know that Jason is getting to be quite a challenge at school. He is basically refusing to do any structured activity (they encourage, but don't force it), refuses to be touched by anyone except the director (which they respect), is screaming when he is frustrated, etc. Today he threw some Legos, and one hit another child- she didn't think it was a maliscious thing, but obviously, he can't be throwing toys.

At home, here are some of our biggest challenges:
-Little to no sense of fear danger. Keeping him safe in parking lots, near stoves, etc. is very difficult.
-He refuses to be led, and will fight you until the end.
-He is W.I.L.D. in stores and on outings. He runs, touches things he shouldn't, won't stay with me, etc. Any attempt to stop this behavior (and I ALWAYS attempt) typically results in ear-piercing shrieking and flailing.
-He is obsessed with negative speech. If I say something like, "That is enough." or "Stop it.", he obsesses about it and echos it. He also picks up on it from the few movies I let him watch on occassion. I try to say a lot of positive things to him, but of course, I occasionally have to say things like the above. He repeats this stuff at school as well.
-Attention is a big big big problem.
-He refuses to comply with most requests. He thrives on power struggles. It's kind of like the 2 year old stage where they ask for milk, you give it to them, and they cry.
-Going anywhere with him is beyond challenging. I can't take my eyes off of him for a single second, and I constantly have to try to steer him back on track. To get him into the garage and into his carseat can take 10 minutes b/c he stops to play with toys, refuses to sit, refuses to be buckled, tries to hurl himself into the front seat to play with the GPS, etc.
-Bedtime is a struggle. He can not settle down enough to sleep.
-Mealtimes are rough b/c he can't sit still long enough to eat, then is hungry immediatley after the meal.

All of these issues are consistent, whether he is in therapy, at school, or with us.

So, please, fire away with any suggestions. I will try nearly anything, aside from physical discipline. The things that have worked the best so far are humor/Playful Parenting, 3 visual "warnings" (like giving him 3 toy cookies to hold during dinner- he loses one if he breaks one of the rules- a reward doesn't much matter, although he then becomes obesessed with that system), and removing him from a situation to take a few minutes to calm down,with me nearby, but not interfering until he's ready. Time outs do not work well at all, and actually intensify behavior issues.

Things I want to look into next- diet changes and metronome therapy.

Fire away!

[egoldber]

-Little to no sense of fear danger. Keeping him safe in parking lots, near stoves, etc. is very difficult.
-He refuses to be led, and will fight you until the end.
-He is W.I.L.D. in stores and on outings. He runs, touches things he shouldn't, won't stay with me, etc. Any attempt to stop this behavior (and I ALWAYS attempt) typically results in ear-piercing shrieking and flailing.
-He is obsessed with negative speech. If I say something like, "That is enough." or "Stop it.", he obsesses about it and echos it. He also picks up on it from the few movies I let him watch on occassion. I try to say a lot of positive things to him, but of course, I occasionally have to say things like the above. He repeats this stuff at school as well.
-Attention is a big big big problem.
-He refuses to comply with most requests. He thrives on power struggles. It's kind of like the 2 year old stage where they ask for milk, you give it to them, and they cry.
-Going anywhere with him is beyond challenging. I can't take my eyes off of him for a single second, and I constantly have to try to steer him back on track. To get him into the garage and into his carseat can take 10 minutes b/c he stops to play with toys, refuses to sit, refuses to be buckled, tries to hurl himself into the front seat to play with the GPS, etc.
-Bedtime is a struggle. He can not settle down enough to sleep.
-Mealtimes are rough b/c he can't sit still long enough to eat, then is hungry immediatley after the meal.

Except for the echolalia, this very much describes Amy. Although come to think of it, she will repeat many times things that have made an impact on her. But she is soooo challenging. Sooooo challenging. We seldom go anywhere that is not "Amy friendly" (like, say 95% of restaurants) because it is simply not worth it.

You may not like my suggestion. :) The thing that works the best for her is consistency. Daily consistency in routine and schedule. Anything else really seems to throw her off. I noticed a huge change in her behavior when we started her in preschool 5 days a week vs 2 days a week. Getting her out the door in the morning is a breeze for school. But on the weekends, it's wretched. Change of any kind really seems to throw her off.

But all that being said, she does very, very well at school. She really thrives on the routine and constant activity and is much more compliant for them than she is for us. I wonder if perhaps he is still adjusting to the routine of school? Is there a way that you can go and observe him without him knowing that you are there? This may help you get a better picture. Or can his OT go and observe? There may be a dynamic or an issue that the school is not picking up on that is driving the behavior there.

[egoldber]

Just another thought. When Sarah was in 4 year old preschool, she had an issue with her teacher. The teacher was very much into K readiness, and had low tolerance for Sarah's "quirks". She suggested having an LCSW that the school worked with come in and observe her and I agreed. The LCSW was able to give us some insights into the dynamic in the classroom. But it was also the case that this teacher didn't like Sarah much because she was challenging and Sarah was totally picking up on that. It made her stressed and nervous.

So if the teacher is getting frustrated, then he may be feeling that.

Just some thoughts that occured to me. :)

[JTsMom]

Except for the echolalia, this very much describes Amy. Although come to think of it, she will repeat many times things that have made an impact on her. But she is soooo challenging. Sooooo challenging. We seldom go anywhere that is not "Amy friendly" (like, say 95% of restaurants) because it is simply not worth it.

You may not like my suggestion. :) The thing that works the best for her is consistency. Daily consistency in routine and schedule. Anything else really seems to throw her off. I noticed a huge change in her behavior when we started her in preschool 5 days a week vs 2 days a week. Getting her out the door in the morning is a breeze for school. But on the weekends, it's wretched. Change of any kind really seems to throw her off.

But all that being said, she does very, very well at school. She really thrives on the routine and constant activity and is much more compliant for them than she is for us. I wonder if perhaps he is still adjusting to the routine of school? Is there a way that you can go and observe him without him knowing that you are there? This may help you get a better picture. Or can his OT go and observe? There may be a dynamic or an issue that the school is not picking up on that is driving the behavior there.


I like all suggestions at this point! I'm desperate. :)

I actually agree with the idea of more structure and routine, and it does seem to help a little. I did talk to the director about observing, although I'm not sure if I could do it without being seen since they are constantly changing rooms. It's very likely that he'd mainly forget I was there though, as long as I stayed quiet and uninvolved.

I doubt the OT could come since she is 70 miles away, but I could probably videotape it. She deals with very similar issues with him herself though, so none of this would be a surprise. She really does seem to get it.

[JTsMom]

Just another thought. When Sarah was in 4 year old preschool, she had an issue with her teacher. The teacher was very much into K readiness, and had low tolerance for Sarah's "quirks". She suggested having an LCSW that the school worked with come in and observe her and I agreed. The LCSW was able to give us some insights into the dynamic in the classroom. But it was also the case that this teacher didn't like Sarah much because she was challenging and Sarah was totally picking up on that. It made her stressed and nervous.

So if the teacher is getting frustrated, then he may be feeling that.

Just some thoughts that occured to me. :)

On the plus side, they actually do seem to really like him, and want to help. Of course it's only been 6 mornings so far. LOL Both of the teachers are former public school teachers, turned SAHM's. The director isn't always there, but she was very very kind about the whole thing, and kept trying to reassure me they weren't nearly ready to give up.

I think, since the behavior is so consistent across the board, that the same stuff would happen in any school. It may well be that it will get better with time if they are consistent though.

[jess_g]

I can totaly relate to your story with your son. I have a son with some developemental delays and some ADD symptoms (but no diagnosis of it). He is 9 years old now and doing realy well but we have had to fight and have him evaluated a few times to get him in the right programs at school. My advice to you would be to go to the local school system special education office with a letter requesting an evaluation for your son. From your descriptions it sounds like he would qualify for a preschool program. My thinking is that a preschool within the school district would know what to do about challengeing behaviors more than the local YMCA program does. They would have teachers and therapists trained to handle children that don't follow the classroom routine or need extra help to do things. Its good that you have your son doing OT and Speech outside of school. I would defenitly keep those programs going. A routine at home is also important as it can make the day go easier. I know some familes that have a schedual posted for each day with blocks of time set aside for each activity. We don't do this but my I do warn my son before we have to go somewhere or do an activity like homework and that helps him to know what is going to happen next.

I hope this helps some, Feel free to pm me if you want to chat about it somemore.

Jessica.

[cchavez]

You are on the right track w/ considering diet changes....is there a DAN! dr. in your area. Also, since he has shown improvement w/ TL....why not try a different listening program like The Listening Program w/ Bone Conduction, Tomatis or AIT? Finally, IM would be great to add in but you will not get the dramatic changes like you would w/ diet and more "intense" listening program.

Also, after a certain point TL increased my son's echolalia....what happens when you take a nice, long break from TL?

Good luck!

Take it from me..mom/therapist with a son that is on a special diet, supplements, TLP w/ BC, IM, OT and social skills. :)

[pinkmomagain]

In some aspects your son sounds similar with dd2 (adhd, anxiety) at a preschool age. Everyone was baffled by her. In many aspects she presented as ASD. She was not dx with her ADHD until several years later.

It sounds like you are already doing many of the right things and you've gotten some good advice. I'll just add that my dd had a SEIT in her nursery/preschool classroom. The school was mainstream (there was some debate about whether or not to transfer her to a preschool that specializes in dev delay issues) but through the school district, we were able to get a SEIT (special ed itinerant teacher) for some of the hours dd was in the classroom (in addition to all the other services she received). She was great. She was there for only dd, but did not make it obvious to the other kids. She helped dd focus, socialize, follow directions, etc. She was like the litlle angel on dd's shoulder helping her along. You may want to look into something like this for your ds. What was great too was we were able to incorporate alot of this woman's strategies at home too.
GL!

[kayte]

I have no advice. I just want to send you some hugs.

It sounds like you are so involved and on top of the situation, always advocating. So wonderful!

:hug:

[MmeSunny]

Don't you live south of ATL? The reason I ask is so do I. My EI specialist works in a pre-k during the mornings in the county. It's a mix of special and regular kids. I know she does has a lot of experience w/ ASD, which I realize is not J.

If you were looking for a different place with very trained teachers used to/comfortable with/enthusiastic about kids with learning differences, PM me and I'll get you her number.

She's been amazing for our DD.

[Elilly]

I'm a big advocate of the GFCF diet. That and seeing a DAN! Dr. DS has autism and it has been a HUGE help and we have our DD on it as well to help with her anxiety, control issues etc and it has greatly benefited her as well. The diet is an adjustment but there are thousands of us doing it so it can be done. Here's a link to the TACA site for a 10 week program to become GFCF:
gfcf-diet.talkaboutcuringautism.org/gfcf-in-10-weeks.htm
My hat's off to you in advocating for your son and knowing that you can do more.

[Drag0nflygirl]

Someone on another (related) board posted this and I thought I'd pass it along:

"JTsMom posted on BBB about her son and I wanted to respond but have forgotten my password. Just wondering if she is on here.

This is a book I think will help her son:

http://www.amazon.com/Disconnected-Kids-Gr...54419074&sr=8-1 "

A few other people chimed in that they had experience with it and were very pleased. HTH

[JTsMom]

Sorry for the delayed reply- busy 24 hours! I really appreciate everyone taking the time to post. Thank you so much for your kind words. :)


You are on the right track w/ considering diet changes....is there a DAN! dr. in your area. Also, since he has shown improvement w/ TL....why not try a different listening program like The Listening Program w/ Bone Conduction, Tomatis or AIT? Finally, IM would be great to add in but you will not get the dramatic changes like you would w/ diet and more "intense" listening program.

Also, after a certain point TL increased my son's echolalia....what happens when you take a nice, long break from TL?

You are always a wealth of info! I wish I could tap into your brain for a day! :) Jason's theapy is covered under insurance, but our options are extremely limited. The main provider we can use is Children's, and unfortunately, there are only 2 people there certified in TL, and it's just the one program.

We did have some success with it last year, then when we hit a particular disk, it turned disasterous, and we stopped. Several months later, we tried again with no luck. Recently we've tried a couple of new CD's- didn't work well at all.

I have noticed that the amount of TV J watches, or if he repeatedly listens to certain (regular) CD's over and over, the echolalia increases, so I've been drastically cutting any screen time and repetitive "kicks" out.




I'll just add that my dd had a SEIT in her nursery/preschool classroom. The school was mainstream (there was some debate about whether or not to transfer her to a preschool that specializes in dev delay issues) but through the school district, we were able to get a SEIT (special ed itinerant teacher) for some of the hours dd was in the classroom (in addition to all the other services she received). She was great. She was there for only dd, but did not make it obvious to the other kids. She helped dd focus, socialize, follow directions, etc. She was like the litlle angel on dd's shoulder helping her along. You may want to look into something like this for your ds. What was great too was we were able to incorporate alot of this woman's strategies at home too.
GL!


That sounds like an amazing set up! We did have J eval'ed through the schools right before we moved here (Feb), and he qualified for absolutely nothing. Part of what makes his situation so complex is that he "passes" really well as an average, but energetic, kid. If you didn't know him, you'd probably not suspect anything. His language delays are extremely subtle, and he uses echolalia well. A lot of times he'll answer things just well enough to fool people. I may just try again for a new eval since now we have an official neuropsych eval, and proven difficulties in a classroom setting.


I'm a big advocate of the GFCF diet. That and seeing a DAN! Dr. DS has autism and it has been a HUGE help and we have our DD on it as well to help with her anxiety, control issues etc and it has greatly benefited her as well. The diet is an adjustment but there are thousands of us doing it so it can be done. Here's a link to the TACA site for a 10 week program to become GFCF:
gfcf-diet.talkaboutcuringautism.org/gfcf-in-10-weeks.htm
My hat's off to you in advocating for your son and knowing that you can do more.

I thought DAN! doctors only saw kids with autism- is that incorrect? I really don't know much about them. Thanks so much for the link. Wow, that diet looks hard-core! Kudos to you for being able to do it. :applause: I'm going to have to do some serious research and soul-searching to decide if that's the next step we need to take. I may do a spinoff post asking for more info on diets specifically.





Someone on another (related) board posted this and I thought I'd pass it along:

"JTsMom posted on BBB about her son and I wanted to respond but have forgotten my password. Just wondering if she is on here.

This is a book I think will help her son:

http://www.amazon.com/Disconnected-Kids-Gr...54419074&sr=8-1 "

A few other people chimed in that they had experience with it and were very pleased. HTH


Thank you so much for passing that on, and please thank whoever posted it for me as well. The link isn't working, but I'm guessing the book is Disconnected Kids, right? I will definitely check it out.

[JTsMom]

Woops- some of these didn't carry over with my masive multi-quote!


I can totaly relate to your story with your son. I have a son with some developemental delays and some ADD symptoms (but no diagnosis of it). He is 9 years old now and doing realy well but we have had to fight and have him evaluated a few times to get him in the right programs at school. My advice to you would be to go to the local school system special education office with a letter requesting an evaluation for your son. From your descriptions it sounds like he would qualify for a preschool program. My thinking is that a preschool within the school district would know what to do about challengeing behaviors more than the local YMCA program does. They would have teachers and therapists trained to handle children that don't follow the classroom routine or need extra help to do things. Its good that you have your son doing OT and Speech outside of school. I would defenitly keep those programs going. A routine at home is also important as it can make the day go easier. I know some familes that have a schedual posted for each day with blocks of time set aside for each activity. We don't do this but my I do warn my son before we have to go somewhere or do an activity like homework and that helps him to know what is going to happen next.

I hope this helps some, Feel free to pm me if you want to chat about it somemore.

Jessica.


I have no advice. I just want to send you some hugs.

It sounds like you are so involved and on top of the situation, always advocating. So wonderful!

:hug:

Thank you for the hugs, and the advice. :) I mentioned above about Jason not qualifiying for school services, so I won't re-hash that. We actually do have a picture schedule of a typical day up, but we've kind of gotten away from it. I'll have to start it up again.




Don't you live south of ATL? The reason I ask is so do I. My EI specialist works in a pre-k during the mornings in the county. It's a mix of special and regular kids. I know she does has a lot of experience w/ ASD, which I realize is not J.

If you were looking for a different place with very trained teachers used to/comfortable with/enthusiastic about kids with learning differences, PM me and I'll get you her number.

She's been amazing for our DD.

I'll have to re-visit the whole school eval thing again and see if I can get Jason qualified for something like this. I'm guessing it's the full 5 day/week program though, right? I'm not sure if he could handle that. We're in Coweta county.




________________________________________

And, just as a mini-update, I talked to the director and both teachers some more yesterday. We came up with some ideas. I'm going to make up a picture schedule for the class, so J will know what to expect. Starting next week, I'm going to sit in on a couple of classes to observe, and to try to help Jason understand the concept of "everybody does art time now". I think if I can get him to see it's not an entirely optional thing, it will help. The teachers think that they can also observe me that way, and pick up on some of the techniques that I use. Win-win. :)

They feel that part of this may just be him adjusting, but they've also noticed that he is DEFINITELY becoming over-stimulated, as some of the worst behavior is coinciding with the noise/excitement level. I'm going to try to get the OT to help me come up with some easy to do in the classroom heavy work/deep pressure activities that hopefully will help with that aspect.

Thanks again to everyone!

[KpbS]

I sent you a pm.

[JTsMom]

Is it a new one, or the one I just replied to? If it's the latter, sorry for the delayed response! :)

[pinkmomagain]

Lori, my dd's language issues were subtle too (not echolalia, but pragmatics). What should help you when you go to the school district right now is the preschool teacher's testament to your child's classroom difficulties. That *should* carry alot of weight in such a meeting.

[JTsMom]

Thanks Gina. That's good to hear!

[JenaW]

They feel that part of this may just be him adjusting, but they've also noticed that he is DEFINITELY becoming over-stimulated, as some of the worst behavior is coinciding with the noise/excitement level. I'm going to try to get the OT to help me come up with some easy to do in the classroom heavy work/deep pressure activities that hopefully will help with that aspect.

Thanks again to everyone!

This is a big issue with our just-turned-4yo-former 25-week preemie. She has no specific diagnosis yet, but also exhibits echolalia, has multiple sensory issues, and major tantrums, excessive physical defensiveness, and is easily overstimulated. Forgive me for not being up on all of the specifics with your son...I am rarely online anymore...but have you tried "brushing" and joint compressions? We started this with Natalie last Christmas, initially did it every 2 hours while she was awake for several weeks, and then gradually weaned down to just once or twice a day. She gets weekly OT for one hour, and we were able to continue throughout the summer, with the exception of 3 weeks at the end of August. Missing those 3 weeks was HUGE to her, and we had to start the brushing every 2h again to get her through. We also do it before any situation we know could be potentially over stimulating (i.e. church, going out to eat, grocery shopping, school). She does heavy work at least twice a day at home (in the morning before school and immediately before we start her bed time routine). We bought a mini trampoline at Christmas, and jumping is one of her favorite things. She also likes to push laundry baskets filled with books around the house, or get "squished" in a blanket or under couch cushions. If we are somewhere that these activities are not available (church), we will do deep pressure squeezes on her arms/legs, and have her squeeze our fingers. At therapy, she loves spinning/swinging, and would do it for hours if she could. Often times, when they are doing "table work" ands he gets squirmy, her OT will send her to the swing or have her do 10 jumps on the trampoline and have her sit again. She is slowly starting to become aware of how these activities help her, and is occasionally perceptive enough to ask for them. I wish I had more advice for you. Hang in there. it sounds like your therapists and teachers are invested and want to be helpful. We may need to pull our DD out of preschool and look for a more supportive environment here. They do exist...it often just takes work to find the best place for our special kids!

J

[mytwosons]

DAN! doctors see kids who have not been diagnosed on the spectrum. There is a field of thought that the cause of a lot of the disorders we see today are related - Autism, allergies, asthma, and ADHD.

http://www.amazon.com/Healing-New-Childhood-Epidemics-Groundbreaking/dp/0345494512/ref=sr_1_1?ie=UTF8&s=books&qid=1254614978&sr=8-1

To second Jera, brushing and joint compressions helped us, but we did it every 2 hours for a longer period of time. While I think that made a big difference, ridding my son's gut of a yeast overgrowth solved the problem.