Update and eval results-- where to go from here?

[nannerl]

This is going to get a little long-- Sorry in advance!

A few months ago I mentioned that Alex had started an interesting tapping thing after Christmas-- around the same time he spontaneously stopped sucking his thumb. The general advice from you guys was to run it by his pediatrician and see what she recommended. At his 5 year well child visit we were talking through a handful of unusual behaviors and tendencies I had observed over the past few years-- aversion to loud sounds, different movements when he is excited or absorbed in an activities (his "excited face" plus finger wiggling or arm shaking), tapping on things when he is tired or bored (with a "tapping stick"-- he can go for an hour or more off and on), deep fixation/interest in specific subjects (in his case trains), disinclination to try new foods, and an inflexibility in some areas of his life. We decided to have him evaluated at Children's Hospital to see if it was a collection of "quirky kid stuff" or if there was more of there-there. He had his evaluation and we have a few answers and a few ideas, but no cut and dried overall diagnosis. Doc ruled out OCD, anxiety, and autism (although he shows quite a few of the secondary spectrum traits, just not the traits in section one, so not enough for a diagnosis). He diagnosed the tapping as stereotypy (non-autistic) and thinks he might have a mild sensory processing condition. Both can be addressed with occupational therapy. Since stereotypy can be associated with ADHD and/or anxiety, we'll need to keep an eye out for that. We also need to keep an eye on his social development as he goes through elementary school-- if he has difficulty we might need to get him reevaluated.

So, current evaluation: bright, quirky kid who might need a little bit of help socially. Suggested plan: keep giving him plenty of opportunities to make friends and be social in different kinds of settings, indulge interests with activities and trips to the library, and maybe some therapy to channel his energy into something other than tapping. Oh, and definitely look into music lessons for him.

Basically he's me in elementary school (except for the tapping, but I was a nail biter). I'm raising myself (LOL!)


We have a follow up with the OT department, but in the meantime I wanted to ask you guys a couple of things. First, I'm not finding a lot on stereotypy (except for a couple of pages from Johns Hopkins)-- do you guys have any resources you would recommend? And the bigger question-- how would you approach all of this with regards to school and resources? Should I explore a 504? Just have a conversation with the teacher? Involve the special ed department? Not do anything and see how he adapts? We are a little in a nowhere land with this, because he shows some HFA tendencies, but not officially, and a little sensory, but not in all areas (we have an OT evaluation at the end of the month-- we'll know more about any sensory issues then), and his stereotypy tends to come out more at home than at school (none of his four preschool teachers over two years suggested any sort of screening-- I pushed for it based on what he was doing at home rather than school).



I would appreciate any thoughts or advice you might have from either parent or educator points of view!

(Who would be good to tag in on this? I keep forgetting who our elementary teachers are!)

[TrudyCampbell]

Hi! Don't have a ton of time at the moment but I would definitely involve the school so that you can get free services that take place in school, which will be easy for you because you won't have to bring him anywhere separate for it. He can get OT in individual sessions and or in the classroom. I would contact the district and go from there. Good luck!!

[katfco]

As a teacher, I would definitely recommend a 504, because that spells out exactly what he needs and how the teacher can accommodate.

[teamhayes]

I'm on vacation right now but have lots of help to share
This is pretty much k to a t more or less
I can offer lots of suggestions

Xoxo

[teamhayes]

Yes as above get the iep for in school help and get in a list asap for Aba type help so he can learn how to play and socialize it's a world of difference

[imimahoney]

I would definitely involve sped. An IEP or 504 are put in place to allow students success and to breal down barriers which might get in his way. Even if he doesn't need all of the accompdations, having them in place would be better than not, imo.

[jaime183]

I would take advantage of school services if he can get them but because they are usually minimal I would look into outside services as well.

[fryjack2]

Ditto everyone that said to involve the school so that he has all the resources that they may have available and can lead you in the direction of ones they don't.

Did your pedi have any recommendations moving forward?

[redmonkeystomper]

I do recommend sharing this info with the school. I would probably look into a 504, but does he have an actual diagnosis? To qualify he will need to be diagnosed with a disability and the school will need to determine that this disability substantially limits his ability to learn.

[nannerl]

So, we will have an occupational therapy evaluation at the end of the month. The developmental pediatrician we've already seen gave us the preliminary diagnosis that we are currently working from-- I'm hoping the OT can add some nuance. My understanding is that the school will consider outside evaluations, but that they will want to evaluate him as well in order to get the ball rolling (if needed) for classroom provisions. I have an appointment set with his pediatrician next week to catch her up to speed, and I'm going to go talk with his pre school teachers too and see if they have any other suggestions in regards to all this.

Like I said, it's a little tough at the moment because we don't have a ton of information and the developmental pediatrician seemed to think some outside OT would help a lot. I have a feeling the school will be the most help, but I just wanted to have as many ducks lined up as possible before setting a meeting with them (which looks like it is the way to go based on all of your collective knowledge and experience-- that's why I wanted to run all this by you guys!)

[kkfeb04]

Definitely let the school do an evaluation for him. I'm jaded as my kid has a dx and the school fucked up (no services in place) so I would say be prepared to fight. I do know that they will only work on things that inhibit education. Hell, they asked for us to get a TSS to keep Katelyn on task and we told them (along with Kalvin's BCBA) that it is the school's job to keep her on task. She isn't a behavior case and we aren't paying out of pocket for something they should provide.

[The Foozzler]

I would start with the special education department for the school district and go from there. It is hard to say whether an IEP or 504 would be better for him because services offered under each vary by district and state.

If he was my student, I would tell the parents to request a PPT because my school only offers OT services to students that qualify with an IEP. They would then look at the doctor diagnosis and decide to test from there. In my school he would probably qualify for OT and behavioral goals without any specific educational goals. Other places might cover this in a 504 instead if OT is available to regular education students.

If you are not looking to get OT through the school, a 504 is a great thing. It just looks at specific strategies that can be used to help him be successful in school.

I have a background in educational law and I would be happy to answer any questions you have.

[jaime183]

Most students I had in first grade got about 15 minutes of OT services a week. It was so minimal and varied greatly in quality