Long question about IEP, maybe Auntie has some advice? — The Bump
Special Needs

Long question about IEP, maybe Auntie has some advice?

Ok this is tooo long i am going to try to edit it down, give me a minute. A quick background- ds is 3.5, has become really verbal though his pronunciation could be better, is in 16 hrs special Ed preschool half of those hours with access to nt kiddos, one hour speech, 6 hrs private aba with 2 hrs supervision. His diagnosing dr and his private therapists have described him to me on many occasions as being "one tic on the spectrum" sometimes I agree with this and other times I think that they aren't seeing past him being affectionate, desiring social interaction, enjoying communication, having great imaginative play skills, and blasting thru their drills fast as a whip- I see past this and sometimes he seems like he is doing great and sometimes I see these issues looming large for him.


there is no doubt for me that despite the really positive skills and the great progress hee is making that what some people would call quirks are issues that will be tough for him. He is dx with PDD NOS and I feel like his therapy schedule is really helpful for him so on we go.


I have two questions- I have an IEP set for next week and his aba supervisor is coming and will meet his school support. How does this usually go? Will there be tension from his school that I am bringing her or do they usually welcome working together? I know this will vary with the particular people but wondered what is typical. I have had nothing but great experiences with these people so far.


his supervisor and I both think he would really benefit from OT to address his mouthing and almost constant toe walking. This is what we hope to accomplish in the IEP. His teacher told me she agrees that his toe walking is almost constant and he is using chewie stix in class (though mouthing is much much worse at home- the other day I had to make a story about how baby brothers are not for chewing, biting, or licking. Food and chewie stix are for biting, chewing, and licking.)


. Any suggestions as to how I can relate mouthing and toe walking to standing in the way of his ability to get an education? His supervisor said the mouthing is clear to her since when he goes to pick up a correct response (a card or whatever) he wants to put it in his mouth before giving it to them. Obviously he can't be going around in mainstream class licking kids.


. If his toe walking is affecting his gross motor abilities since he will eventually not be able to compete in games like tag or if it affects his ability to socialize since he will get teased at some point does that qualify as an educational need?


. I'm trying to journal the two behaviors but it looks something like this Tuesday- toe walked, did not stand on heels while stretching, touched heels to floor only while being actively asked to do so, Wednesday - the same etc. He does it all day everyday. I guess I need to figure out how that affects him like Wednesday- couldn't keep up with neighbor kid at tag because of toe walking, fell down because he wasn't looking where he was going???is that more like it? Is there a site where people show you how to document these things specifically for IEP meetings? Ok I have another question but this is out of control long so I will ask it in another post. Thank you for reading.


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Re: Long question about IEP, maybe Auntie has some advice?

  • Sounds like you have an enviable plan in place.


    I feel like we really lucked into it. I didn't know what I was doing when we originally got him tested and with such a subtle presentation it was easy to tell ourselves he probably didn't need therapy. ?I pushed to get him therapy when the psych told me he was borderline but in the very early days I don't know what I would have done if they had denied him. ?I'm sure dh would not have wanted to pay out of pocket at that point so thank god we are in California. Of course now I KNOW that he is benefiting from therapy and would do anything in my power to continue them.


    It's great that he has a relatively greater degree of engagement because that's the one piece of autism that remains resistant to fixing. This is really huge. But I think it's always important to consider the source of such opinions. From a developmental pedi, who sees kids who are disengeged, intellectually disabled and nonverbal, kids like ours do seem to straddle the dx. But the bottom line is that kids with subtler presentations need to find a place in the mainstream world which means even minor tics and glitches may need remediation. I don't put a huge stock in skills demonstrated in a clinical or one to one setting; until they're globalized to real life where he can access them in the moment they don't exist. By 6th garde. DS could have taught MGW's Social Thinking, but it was still a collection of emergent skills on the playground with peers.


    ??His dx was made by a psych at our local regional center after meeting with him, discussing/reading reports done by his aba team who had been seeing him approx 10 hours a week/6 months. ?We didn't see the developmental psych till after he got dx'd. ?He craves social interaction and is happy to work for hugs and tickles. ?He will walk up to other kids and introduce himself, suggest a game, or try to demonstrate a toy BUT we had to teach him for instance that walking up and hitting a kid isn't the way to say Hello. ?He wants it- he just doesn't know how to get it. ?He seems to be responding well to be taught social startegies, just doesnt come naturally to him as it does for nt kids. ?But he is learning, the therapies seem to be really working him. ?It is definitely much easier for him with an adult though. ?One on one (like in his home aba and even in school since they have 5 adults to 7 kids)he is a whiz, it is on the playground that he falters. ?


    I think what you said about tics and glitches is applicable here. ?while I am grateful he has all these skills and I think they will serve him well I think they seem deceptively small when compared to kids who are disengaged etc but will be glaring against the backdrop of nt kiddos when he mainstreams. ? I see them being a real issue as he grows up and needs to navigate social situations with grade schoolers and, gasp, teenagers! .


    ?While it may be less glaring these are still issues that will seriously hold him back?and I see them as such. ?I do still have a part of me that feels (not thinks but feels) like it is a quirk of personality and not a medical condition(in his case) ?LOFL reading that back to myself I realized how stupid that sounds. Of course it isn't just a personality quirk. Duh. ?Maybe i just made a break thru there. He is just so much like my dad- my favorite person in the whole wide world, I love Dad's "quirks". Ok getting off topic here.


    ?



    B ? It's great that your ABA person can attend. In good schools, so long as everyone looks at this collaboratively, it should be fine. My DS's psych has never attended an IEP meeting, but he's observed in school and has vetted all of DS's early IEPs. He trained most of DS's teachers as the district consultant. I always made him available to any teacher who felt the need to ask questions or brainstorm. So far as your ABA person doesn't overstep her qualifications, I expect this will go well.


    glad to hear that. ?I think all these ladies will get along and work together. ?I have so far had nothing but good experiences with them. His supervisor told me specifically that she refrains from making specific recommendations on therapy to the school because they basically don't like it. ?So I thinkshe has a sense of where not to tread.


    This is absolutely an educational need. His toe walking makes him physically unable to safely access the educational setting. The chewing/licking could be sensory seeking version of SPD. In a few cases, it's more a function of normal oral exploration that is showing up late. An OT eval can help sort that out. Chewelry and redirection are approaches to sensory seeking, but it might make sense to have a proactive sensory diet in place to avert this behavior as it can be stigmatizing. This is a behavior that might make sense to have an FBA done on. If you can find the antecendents to mouthing/licking you may get enough information to extinguish it.


    glad to hear it is considered an educational need. I think the mouthing is sensory seeking....big time. He NEEDS to chew. We had a talk about it today because he is chewing everything up and dh tossed his chewie stix because he has been biting little bits off them. ?Dh just wants to replace them so he isn't eating them. ?Honestly I'm starting to hit a wall on finding things he won't actually eat. We are way careful about plastic and chemicals and here our kiddo is eating anything he can get in his mouth including plastic (of course we buy the bpa, phthalate, PVC free type but it's still not great). I tried giving him wood teether toys but he went thru them like a woodpecker. ?I have some bracelets (lifefactory ?I think?) on the way.


    Though his toe walking is near constant it is often ordered by excitement and the. He does the serious up and down, joint compressing, jolly jumping, toe walking. ?The. He becomes so excited by the toe walking that he forgets about the original thing that excited him into (or made him seek the sense) the toe walking. ?He then has trouble with task completion because he is averted by the toe walking happiness. ?The mouthing is more likely to happen when frustrated and follows he same pattern- which obviously affects his ability to learn ?since he is distracted. This is only in therapy though since he will toe walk or mouth any old time when we are hanging around. ?I think I may be seeing some hand flapping lately too. ?It isn't super obvious but ?now that I am mo tuned into seeing him get excited and look for input I notice the way he moves his hands. ?He was never written down for hand flapping before and we looked for it a ton. ?Sometimes he would sign wildly (we did baby sign starting at 3 months and having nothing to do with asd) and he would very occasionally stim on a toy but never more than 5 seconds at a time and always leading into appropriate play. ?


    . It is weird now that I am even just a teeny bit more knowledgeable about this stuff I am seeing his behaviors through such different lenses and noticing so much more. I am really thankful that he got services because I know I missed and under reported so much because I just didn't recognize it.


    thank you for the link, I will check it out. ?I have another question :))) his aba therapist as well as an old supervisor has on several occasions said that they feel because of his social engagement that he will "grow out of" ?his dx and all of is therapists and teacher have told me he will be mainstreamed by kindergarden. ?What I don't get is- do people ever "grow out of" autism? ?I may be totally off but I was sort of under the impression that it is and will always be a part of him like his curly hair. ?I can brush it or cut it or whatever but his hair grows curly. ?Not sure if that made sense as I am tired so maybe I don't make sense. Does growing out of it mean being able to mainstream as a result of coming up with strategies for managing desires, quirks, behaviors that are outside the norm and doing so at a level that is successful enough that he can survive in a mainstream classroom or does "growing out of it" mean he will no longer have these quirks etc? ?If he "grows out of it" will socialization still be difficult for him? ?Obviously you don't have a crystal ball ?Or even know my child but I guess I am owning what that statement even could mean. What the possibilities are. I had sort of come to a place of thinking things would most likely take some extra effort for him (and us) in the long haul. Of course we don't know how much it will affect him. ?Ok I am too tired and fear I make little sense so go easy if I sound like I'm crazy pants. I've just been confused by that statement for a while.


    . So auntie, how did you become the bump resident asd specialist? ?Thank you for being here and answering all of our questions. You must take quite a bit of your time to do that and I appreciate it. Unless of course auntie is just the name that three or four people are posting under :)

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  • That makes ore sense. I wasn't "planning" on him outgrowing it and sort of wondered what clinical meaning that term would have in relation to asd. Sort of like you said some people consider their kiddo cud when they speak.

    . The psych that dx him thru rc actually did tell me she was doing it to justify services. She said he could go either way and we talked and I said I rather him be scored low and get services. I thank god that she did that because as he has grown and my knowledge on the subject has grown I feel sure that he is on the spectrum. Where I don't know but I feel like it is obvious for me that he needs services and I think he would be a fish in the water without fins in a regular school with no accommodations or therapies. So far we haven't seen rigid play or thinking so I'm crossing my fingers he will continue his flexibility of mind.

    . He hasn't gone backward with his skills so much as he has developed all these sensory issues recently. Right now I think that is glaring for me and the thing I am most motivated to get him help for. It breaks my heart to see him just aching for something to bite.


    . We w a developmental pedi thru regional service but am considering seeing a private one who will follow his progress over the years. Have you found that it is significantly better to get your own dev pedi? Thank you for being such a resource and taking yorutimeto do so (awkward sentence structure blech).

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