Who does my son need to see to get the right help?

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2berrryblondeboys
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26 Sep 2010, 7:31 pm

I am tired of getting the run-around and the waitlists. I don't even know WHAT he needs at this point.

He's 5 years old, just started kindergarten and it's a disaster. He has his IEP on Sept. 29th. Academically, he could be a 1st or even a second grader, but he can't communicate with words properly and refuses to engage - fear and just not wanting to do it are winning.

Now, he CAN talk - talk up a storm, but it's more monologues. He is beginning to get some back and forth speech, but it's not natural. And it's never about how he feels or what he wants. If you are talking about bugs or what he wants to eat... he can tell you. If you ask him what he learned in school, blank face. Or how do you feel? And tell a story? Never. He doesn't do imaginative stuff. And I think it's more because he KNOWS it's fake and not real and feels that's too silly to make up stuff.

So, he doesn't have problems with speech, but in communicating in a back and forth PERSONAL conversation.

And he has these behaviors of refusing to do what he doesn't want to do. It's been that way as an infant. THere is no making him something he doesn't want to do. Doing so will result in sulking and whimpering for HOURS and he still probably won't do what you want him to do. How does that work with school?

Who does he need to see to get over this stuff? And is there anyone in the Baltimore/Columbia MD area and who would you recommend for seeing? Kennedy Krieger stinks. I waited a year for diagnoses appts. and now for over a year to get into CARD and to see other specialists (OT and Speech). I can't wait on this any more.

BTW... I'm not new. I just couldn't figure out my blasted password and had to create a new name. and then I typed berrry! LOL I was mams99.

Melissa



buryuntime
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26 Sep 2010, 8:42 pm

Quote:
And he has these behaviors of refusing to do what he doesn't want to do. It's been that way as an infant. THere is no making him something he doesn't want to do. Doing so will result in sulking and whimpering for HOURS and he still probably won't do what you want him to do. How does that work with school?

What's making him not want to do things? Is it fear of change / doing something new? Sensory issues you might not be aware of? Rather engage in an interest? I'm described as "stubborn" probably because I (well still am) very rigid and don't do or question things I see no purpose or sense in. But I was also a strict rule follower, when I could make sense of things of course. Maybe he isn't doing things that he deems nonsensical like with making up stories.



angelbear
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26 Sep 2010, 8:48 pm

My son is also 5 and sounds a lot like your son. I took him to a developmental pediatrician who diagnosed him with PDD-NOS/possible Asperger's Syndrome. They are both on the spectrum. My son's speech sounds just like your son's. My son's back and forth speech has improved quite a bit, and I believe it is due to the speech therapy that he has been receiving for 2 yrs.

If your son is getting an IEP, the school must have done an evaluation on him. Is he in a regular kindergarten class? If the school he is going to has a special education program, they should be familiar with ASD, and should have professionals who know how to work with your son and his behaviors in a classroom. I don't know that there is any doctor or therapist who is going to help your son just get over these things. This is how your son's brain is wired, and it will improve in time with therapy and school and your love and support.

Hang in there, I know the waiting can be torture!



2berrryblondeboys
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26 Sep 2010, 8:56 pm

buryuntime wrote:
Quote:
And he has these behaviors of refusing to do what he doesn't want to do. It's been that way as an infant. THere is no making him something he doesn't want to do. Doing so will result in sulking and whimpering for HOURS and he still probably won't do what you want him to do. How does that work with school?

What's making him not want to do things? Is it fear of change / doing something new? Sensory issues you might not be aware of? Rather engage in an interest? I'm described as "stubborn" probably because I (well still am) very rigid and don't do or question things I see no purpose or sense in. But I was also a strict rule follower, when I could make sense of things of course. Maybe he isn't doing things that he deems nonsensical like with making up stories.


Some of it is not wanting to stop doing what he wants to do. At home, we've found ways of dealing with that - 5 minutes notice, etc. But, a lot of it is fearing something new. but then he gets stubborn for what seems like no reason.

Example: Until he was reading, he has said xylophone the way it's supposed to be. Now he refuses to hear it out that it's not xylopone because he will not accept that PH makes the f sound. There's not discussing it.

If you want him to read something he doesn't want to read, he'll refuse. Color something he doesn't want to color - refuse.



2berrryblondeboys
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26 Sep 2010, 8:59 pm

angelbear wrote:
My son is also 5 and sounds a lot like your son. I took him to a developmental pediatrician who diagnosed him with PDD-NOS/possible Asperger's Syndrome. They are both on the spectrum. My son's speech sounds just like your son's. My son's back and forth speech has improved quite a bit, and I believe it is due to the speech therapy that he has been receiving for 2 yrs.

If your son is getting an IEP, the school must have done an evaluation on him. Is he in a regular kindergarten class? If the school he is going to has a special education program, they should be familiar with ASD, and should have professionals who know how to work with your son and his behaviors in a classroom. I don't know that there is any doctor or therapist who is going to help your son just get over these things. This is how your son's brain is wired, and it will improve in time with therapy and school and your love and support.

Hang in there, I know the waiting can be torture!


My son has the same diagnosis from Kennedy Krieger - PDD-NOS/Asperger's. At his old school system, he got 30 minutes of speech in our home a week and 20 minutes a week on motor skills (he has extremely weak hands - bottom 1%).

We do a lot of work with trying to get the speech in order and it keeps improving - until it comes to sharing inner thoughts.



jat
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26 Sep 2010, 9:01 pm

Your son clearly has issues with communication - and that comes under speech and language. Even though he doesn't have issues with what you think of as "speech," the issues that fall within that category are huge - much bigger than what we usually think of. He needs help with pragmatics, the social use of language. Speech isn't just about saying words - it's about how you use words and understand how to use them. He should be getting a LOT of speech and language support through school - pragmatics, socialization, and depending on his particular needs, possibly work on idiomatic language.

The refusals can be a real challenge. Some talented teachers are able to engage children by employing their interests in teaching a variety of subjects. This should be part of the specially designed instruction in the IEP, if it is likely to be an effective tool in working with your son. Also, you should ask the school to do an FBA (functional behavioral assessment) - this must be done by a qualified individual, not by the classroom teacher. It should be a certified behavioral analyst. Properly done, it should take some significant time, over several days or weeks. After the assessment is completed, it should be the basis for developing a BIP (positive Behavioral Intervention Plan). The BIP should be used to help your son adjust to the demands of school, by using a positive - never punitive - approach.



2berrryblondeboys
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26 Sep 2010, 9:14 pm

trying to get him help at his old school system was impossible. What a joke - 30 minutes a WEEK??? Then, the OT person showed up ONCE all semester. Then we moved, and had chaos and so on. I really think this new school system is better and really wants to help, but I'm doubtful they'll give him what he really needs. I'm beyond frustrated with the lack of support we've gotten so far.



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26 Sep 2010, 9:56 pm

I know it is really frustrating. I hope this new school can help more. But what I have found is that I have to do a lot of work with my son on my own as well. Especially with the speech stuff. One thing that has helped with my son doing things that he doesn't want to do is positive reinforcement or rewards for doing the desired task. The rewards have to be something that is highly motivating to the child. Usually after they start to learn that they feel self satisfaction after achieving something, then the rewards can be phased out.



angelbear
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26 Sep 2010, 9:58 pm

Also, if he has extremely weak hands, this is probably why he doesn't want to color. OT can help with that too. Does he like play dough? My son's OT has suggested him squeezing and playing with playdough to strengthen his hand muschles. Hopefully, you can get the ball rolling with therapy and some of this will improve.



2berrryblondeboys
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26 Sep 2010, 10:23 pm

angelbear wrote:
Also, if he has extremely weak hands, this is probably why he doesn't want to color. OT can help with that too. Does he like play dough? My son's OT has suggested him squeezing and playing with playdough to strengthen his hand muschles. Hopefully, you can get the ball rolling with therapy and some of this will improve.


Ironically, he is very good at art and writing. Probably the best. No, I know he's the best, in the class. BUT... it's all backwards fist. He started to refuse to color when the teacher made him hold his pencil/crayon correctly. IMO, that's so not important right now. We're not talking normal weekness in the fingers. We're talking baby fingers.

He actually tries to avoid using them. He will do playdough, but not much. Refuses to do legos (way too hard). He kneads bread with me a lot (and loves it) and we are trying to work on it, but with great resistance on his part.



2berrryblondeboys
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26 Sep 2010, 10:24 pm

angelbear wrote:
I know it is really frustrating. I hope this new school can help more. But what I have found is that I have to do a lot of work with my son on my own as well. Especially with the speech stuff. One thing that has helped with my son doing things that he doesn't want to do is positive reinforcement or rewards for doing the desired task. The rewards have to be something that is highly motivating to the child. Usually after they start to learn that they feel self satisfaction after achieving something, then the rewards can be phased out.


I think I will try rewards. I don't think he would have understood that until recently (he had a hard time deciphering language), but we work on language at home A LOT.



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27 Sep 2010, 9:17 am

My son also holds the pencil incorrectly. I too do not think it is that important as long as he is able to write the letters. But it is something they are working on at school, and I try, but don't force it at home. One thing we have been told to try and I think it is helpful is using a broken off crayon. If the crayon is broken, then the fingers almost instinctively pick it up the right way.



2berrryblondeboys
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27 Sep 2010, 9:25 am

angelbear wrote:
My son also holds the pencil incorrectly. I too do not think it is that important as long as he is able to write the letters. But it is something they are working on at school, and I try, but don't force it at home. One thing we have been told to try and I think it is helpful is using a broken off crayon. If the crayon is broken, then the fingers almost instinctively pick it up the right way.


Oh, that's a good idea. They also have told us to get an upright easel instead of a flat table - harder to write backwards fisted if it's vertical. We'll see. Thanks for the tip!



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27 Sep 2010, 9:42 am

Kids all develop at different rates, even more so when they are on the spectrum. My son was/is delayed at almost everthing, but he's still a very bright kid. My 2yo has a better pencil grip than my son who' almost 6. Interestingly, I have found that the less my son is pushed, the better he does. He's been in speech, pt, and ot and now he's only getting minimal pt because we moved and his previous services were discontinued. I was initially very worried about his reduction in services but in reality, he seems to be doing much better without them. I was all prepared to fight for a new IEP, but now I really don't think it's necessary. Too much focus on all that's "wrong" can sometimes overshadow all that's so right. Sometimes if we just let them grow at their own pace, they can be better off for it.



2berrryblondeboys
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27 Sep 2010, 9:46 am

number5 wrote:
Kids all develop at different rates, even more so when they are on the spectrum. My son was/is delayed at almost everthing, but he's still a very bright kid. My 2yo has a better pencil grip than my son who' almost 6. Interestingly, I have found that the less my son is pushed, the better he does. He's been in speech, pt, and ot and now he's only getting minimal pt because we moved and his previous services were discontinued. I was initially very worried about his reduction in services but in reality, he seems to be doing much better without them. I was all prepared to fight for a new IEP, but now I really don't think it's necessary. Too much focus on all that's "wrong" can sometimes overshadow all that's so right. Sometimes if we just let them grow at their own pace, they can be better off for it.


But he needs help. When he is working one on one with a para-professional, he does great - completes his work and excels. Without the para-professional there at his side, he doesn't engage and he sits there - not participating in anything. He's afraid to engage/take part in singing, reading circle, etc. It's new... and if given a choice (which somehow he feels he has) he would prefer not to do it. WHich is not an option.