Just contacted EI (finally) and feeling kind of nervous. UPDATE #29 - Page 2

[physmom]

crunchy_mommy  That's great that things went so well! Good luck at the full evaluation in 2 weeks, it sounds like they're really going to work with you guys and hopefully things will start improving for you guys ASAP! 

[ellemenope]

Originally Posted by crunchy_mommy 

pranava, great to hear you had a good experience and that your DS will be getting some help!!

physmom, hope all those logistics work out for you, I can't imagine navigating this in a foreign country!!

The appointment went really well. It was just the intake but I was SO glad I had made that list ahead of time, it really seemed to help. It was wonderful that she focused right in on the issues we were concerned about (rather than harping on him still nursing or something, which is one of the things I was afraid of!!) To be honest, I wish I'd done this sooner, I think I let my fears & misconceptions about EI get in the way. She seemed to really pick up on the same things I was concerned with, and thinks he may have some sensory and social/emotional issues... possibly some communication oddities too (despite his advanced speech skills). We will have the full evaluation in 2 weeks, and that will be with a team of 4 (maybe 5 if she can get an OT to come out). I really appreciated that she asked whether he'd shut down with such a big team focusing on him, and said they may have us do the 'evaluating' with him while they observe, since he is much more responsive to us.

So all in all, a very positive experience. She said our state allows for "clinical judgement' alone to be sufficient for services. She was fairly certain that he'd be eligible for services based on what we told her today, even if doesn't technically show any delays at the evaluation, because he seems to have enough other issues that he (and we!) could really use the extra support. I'm kind of relieved...

ETA: Nursing inevitably came up, and she didn't even blink (and then DS later nursed while she was here too) -- cosleeping didn't come up but it seems like they are incredibly professional, respectful, and open-minded about these things (how refreshing!!)

 I am happy to hear all the good updates!

crunchy_mommy-  I am curious anout your son's communication oddities.  DD also has advanced speech skills, but seems to communicate oddly where her same-aged and younger peers do not.  She has this amazing depth of language use, but that stuff on the surface seems difficult to come by for her.  It all lies within pragmatics, the social use of language, so it is hard to figure what is going on.  She communicates fine in all areas with me, but it is difficult and unnatural sounding for her to say "hi" to strangers.  She also has difficulty answering simple questions of strangers, as well as making eye contact.  She has no problem just ignoring people. Or, sometimes, she will answer a question by commenting on something that is interesting to her at the moment.  But, sometimes, she is fine.  So, a lot of it could very well be shyness. 

[Emmeline II]

Originally Posted by ellemenope 

crunchy_mommy-  I am curious anout your son's communication oddities.  DD also has advanced speech skills, but seems to communicate oddly where her same-aged and younger peers do not.  She has this amazing depth of language use, but that stuff on the surface seems difficult to come by for her.  It all lies within pragmatics, the social use of language, so it is hard to figure what is going on.  She communicates fine in all areas with me, but it is difficult and unnatural sounding for her to say "hi" to strangers.  She also has difficulty answering simple questions of strangers, as well as making eye contact.  She has no problem just ignoring people. Or, sometimes, she will answer a question by commenting on something that is interesting to her at the moment.  But, sometimes, she is fine.  So, a lot of it could very well be shyness. 

My son has this issue. He has ADHD (which often comes with social issues) and possibly Asperger's (reeval next year). He sees a speech therapist for help with social reciprocity and pragmatics.

[Just1More]

Originally Posted by ellemenope 

 I am happy to hear all the good updates!

crunchy_mommy-  I am curious anout your son's communication oddities.  DD also has advanced speech skills, but seems to communicate oddly where her same-aged and younger peers do not.  She has this amazing depth of language use, but that stuff on the surface seems difficult to come by for her.  It all lies within pragmatics, the social use of language, so it is hard to figure what is going on.  She communicates fine in all areas with me, but it is difficult and unnatural sounding for her to say "hi" to strangers.  She also has difficulty answering simple questions of strangers, as well as making eye contact.  She has no problem just ignoring people. Or, sometimes, she will answer a question by commenting on something that is interesting to her at the moment.  But, sometimes, she is fine.  So, a lot of it could very well be shyness. 

Don't want to totally derail this thread, but wanted to say that my oldest is 6 and still like this.  I realized recently, though, that it isn't really her.  I always thought she was behind socially, but a month or so ago I saw that actually she is, and always has been, incredibly ahead.  Kids her age, and worse, adults, say things that strike her as odd because she is used to communicating at a much deeper level.  As she is getting older, she can play with younger children because she mothers them, but still prefers to be with kids 3 or 4 years old than her.  She doesn't want to talk, she wants to have a conversation, and most importantly, share information.  I have noticed that my almost 4yo ds is the same now.  I spent a long time worrying about them, wondering if we didn't get out enough or something, lol, but now I can see that they will talk happily and fully with anyone who will actually listen and converse with them.  It's just hard to find those people.

[crunchy_mommy]

Originally Posted by ellemenope 

 I am happy to hear all the good updates!

crunchy_mommy-  I am curious anout your son's communication oddities.  DD also has advanced speech skills, but seems to communicate oddly where her same-aged and younger peers do not.  She has this amazing depth of language use, but that stuff on the surface seems difficult to come by for her.  It all lies within pragmatics, the social use of language, so it is hard to figure what is going on.  She communicates fine in all areas with me, but it is difficult and unnatural sounding for her to say "hi" to strangers.  She also has difficulty answering simple questions of strangers, as well as making eye contact.  She has no problem just ignoring people. Or, sometimes, she will answer a question by commenting on something that is interesting to her at the moment.  But, sometimes, she is fine.  So, a lot of it could very well be shyness. 

Yeah I'm not sure what is shyness/social anxiety and what is something else. It's confusing. But I would say his 'oddities' are similar to your DD's in some ways. He never ever greets anyone (including me & DH) or responds to a greeting without prompting. Although he has a huge vocabulary and can easily form 10+ word sentences, he cannot ask DH (or anyone else besides me) to do something for him like change his diaper. I have to coach him through it & give him the exact words to use. He will then go off and repeat those words verbatim, except he may not be in the same room as or looking at the person he's talking to (and he has a very quiet voice) so usually no one hears him. He doesn't talk much to people outside our family, and when he does, he pretty much just says "yeah" in a cute little singsong voice. It doesn't matter if the answer should have been "no" or if it wasn't even a question... "yeah" is just about all he'll say. For the most part he completely ignores people and he does have a ton of trouble making eye contact (often spins his head away to avoid it). However, if I repeat things people say myself, he will respond appropriately to me. I feel like an interpreter (as if he were deaf). At home, he talks constantly, and most of it is long stories about things he did or saw (often things from months ago...) He will answer questions about his stories but he is just as likely to go on telling them to himself -- our presence often seems irrelevant. It's such a contrast from, say, his friend that is just about the same age as him and has a similar vocabulary and all -- she talks directly TO me and asks me questions and interacts with me and asks me to go do things with her...

[physmom]

I thought I'd update quickly here.  We've ruled out allergies causing all of DD's behaviors (this was both DH and my hope, although I don't think either one of us actually believed it was the only thing going on).  We went to the allergist today and they tested her and everything seemed just fine.  We're going to do a blood test in June just to be on the safe side but this just means we have to find a way to get to an OT soon...  DH thinks he might get the card on Weds that we'd need to see the OT so here's hoping we get it!

[crunchy_mommy]

Originally Posted by physmom 

I thought I'd update quickly here.  We've ruled out allergies causing all of DD's behaviors (this was both DH and my hope, although I don't think either one of us actually believed it was the only thing going on).  We went to the allergist today and they tested her and everything seemed just fine.  We're going to do a blood test in June just to be on the safe side but this just means we have to find a way to get to an OT soon...  DH thinks he might get the card on Weds that we'd need to see the OT so here's hoping we get it!

Good luck!!

Yeah I keep hoping DS's issues are just allergies but I really doubt it and I don't think he'd tolerate the test anyway (though we may give it a shot when we get new insurance, if he's still having issues...) Did they do a skin prick test on her?

[physmom]

Originally Posted by crunchy_mommy 

Originally Posted by physmom 

I thought I'd update quickly here.  We've ruled out allergies causing all of DD's behaviors (this was both DH and my hope, although I don't think either one of us actually believed it was the only thing going on).  We went to the allergist today and they tested her and everything seemed just fine.  We're going to do a blood test in June just to be on the safe side but this just means we have to find a way to get to an OT soon...  DH thinks he might get the card on Weds that we'd need to see the OT so here's hoping we get it!

Good luck!!

Yeah I keep hoping DS's issues are just allergies but I really doubt it and I don't think he'd tolerate the test anyway (though we may give it a shot when we get new insurance, if he's still having issues...) Did they do a skin prick test on her?

We did and I was shocked but DD did really well with it!  The doctor had great bed-side manner, though, so I think that helped a lot.  She talked to DD for a long time first, let her play with many of the things there and only did the skin prick test at the very end when so DD got to know her a bit then and didn't freak out too much.  I'm glad we got it done just so we could rule that out. 
 

[crunchy_mommy]

So we had the full evaluation with the whole team today.

I have really mixed feelings about it.

He was an angel. I'm not kidding, the minute they walked in the door, he transformed into this kid I've never seen before. He didn't cry or protest once. He looked right at the therapists and answered most of their questions. HE PLAYED ON HIS OWN for a large part of the time, which he's pretty much never done. We tried to get him a bit riled up on purpose (they wanted to see at least some of his behaviors) and DH even brushed his teeth which is always sure to get screams, and HE STOOD THERE SMILING! What the heck?!??! I was in shock, like WHO IS THIS KID??? No echolalia. No freaking out over noises (there weren't any noises really though, but still). No shutting down when they picked him up. It was bizarre. I wanted to hire the whole team to just sit on my couch every day so he would be happy -- I've rarely seen him even remotely as happy & interactive as he was while they were here!!!

So I don't know how I feel about that, I don't think they got an accurate picture of what he's like day to day, but at least someone finally got to see the wonderful, amazing little boy that DH & I see!

He tested way off their charts on everything and apparently is the most advanced 2-year-old they've ever seen, especially in communication & cognitive ability. They were 'testing' him on random things just for fun, to see how far he'd go. I know he is smart but I really don't think he is all that advanced, maybe they were just being nice but they were in awe of him and were joking about putting him on Jeopardy or in Mensa. I felt really awkward about that (brought back feelings of people making similar comments about me as kid and it always embarrassed me, still does).

He loved being quizzed. Makes me think I should do some kind of "school" for him at home. He just loved it. I wasn't planning on starting homeschooling until he was 6 but perhaps we should start sooner.

Anyway, given his history and the current struggles we have (even though they weren't evident today!), we are going to have appointments with the EI specialist and the OT a couple times of month to start, and add services if necessary as they get to see more clearly exactly what's going on with him. He clearly has sensory issues but since they were not presenting today, it's not some kind of central nervous issue or something, which is good.

I'm glad he'll be getting some help -- I almost cried because when he was doing so well I thought they were just going to say they couldn't help him because he showed no delays. Part of me feels like calling EI was an overreaction... maybe I was hoping for some validation? I felt like a liar since he did everything the opposite of how I explained he normally does. They were so nice though, and said they wished I'd called sooner so they could've tried to help for the last 2 years.

[sapphire_chan]

So what you need is lifesize cardboard versions of the evaluators to just stand around your house?

What would be awesome, but very unlikely, would be if it turned out that everything that was concerning you turned out to be a phase and he just out grew them all at once. Second best, they're still there and the EI work helps make his life easier and relieves your concerns.

[physmom]

Oh can I relate! I remember when DD was between 1-2 years old and we'd have our well-baby check-ups and all our problems would just magically disappear the second she got into the doctor's office (it probably helped that that was during the time period that she wanted to be a doctor and our pediatrician let her check out the stethoscope, lights etc thoroughly ).  It wasn't until she started scratching herself to the point that she can scabs all over her body that our pediatrician really saw what was going on. 

Anyways, I really hope everything goes well with EI/OT.  I hope for your sake you all can find some nice coping mechanisms for his sensory issues.  Most likely more of his issues will come out over the time that he sees the EI specialist and OT.  If you're really concerned about it, though, you could always video tape some of his, uhh... not so nice moments?

[crunchy_mommy]

at the cardboard cutouts -- that's exactly what we were joking about!!

Was thinking about video taping, though I think our camera is broken....

The rest of the afternoon/evening he slowly reverted back to his normal self, except he played!!!!! I seriously wonder if he heard us talking about him not playing and said, Hmmm maybe I should play so they don't worry. I'm eager to see if this was a one-day deal or a sign of huge improvement. Maybe we're turning a corner. I still feel a bit ridiculous having all these people come for nothing. Obviously they weren't laughing AT me but they were cracking up the whole time because he just flew through their tests and blew them away. Maybe I should never have called... but hopefully it will benefit him somehow or he'll continue to magically improve on his own!