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

[crunchy_mommy]

DH just called for an EI evaluation and I think we're BOTH nervous. It's a little over a week away. I'm not sure if our anxiety is over having strangers come to our house or denial over DS's issues or that we'll look like we're over-reacting first-time parents or maybe a mixture of all of that.

How do we prepare? Should we make a list of DS's history/issues or will they ask pretty detailed, directed questions? (I am not very good with open-ended discussions and my own social anxiety often gets in the way so things get left out or glossed over). We have a 1-hour appt. and then a 2-hour follow-up a couple weeks later, all in our home. They said they will have us sign a release for his medical records, but should we also have that kind of information (growth etc.) on hand for the 1st appt? Why am I so anxious about this??????

DS is 26mos and it's kind of hard to explain what's going on with him. His overall development (language, fine & gross motor skills, etc.) seem to be completely on track or ahead, but there seems to be something going on with him emotionally & socially, maybe sensory stuff. He doesn't run and play like other kids do and he has a tendency to shut down in certain situations (loud background noises is the most obvious; also when someone picks him up). He is still incredibly clingy to me and still screams hysterically if DH tries to do anything for him (change his diaper, brush his teeth, pick him up) even though DH has always done these things for him and has been laid off for months now so spends tons of time with him. Apparently I'm the only person he's comfortable & happy with. He's only really been eating substantial amounts for a few months now, he's basically survived on only breastmilk for the last 2 years. He's a horrible sleeper and until recently was waking up every 20-45mins all night long... now we're sometimes getting longer stretches (occasionally even 5 or 6 hours!) but it's a lot of work & it doesn't seem to help his mood any. I just want him to be happy and enjoy life, but he doesn't. Are they going to laugh at me over this?

Anyway, any input/experience/thoughts would be greatly appreciated!!

[beachbaby]

 I felt much like you did after making that first call. My DD's challenges, too, were more social/emotional...she met all her milestones, etc. but like your DS was clingy, had separation anxiety, social anxiety around peers, etc. I hesitated having her evaluated, partly, because I was reluctant to label something I thought could very well be within the realm of typical. I wish I had done it sooner. I think you are on the right track, mama.

I would make a bulleted list of your concerns. Our EI person mostly observed DD and asked a few questions, but I felt like I didn't get a chance to cover everything in such a short time. Especially with DD present. I'm glad I had a list to hand her.

Good luck and let us know how it goes. I know it's hard picking up the phone and starting down this path. You've got lots of support here.

[Emmeline II]

SPD Symptom Checklist For Infants And Toddlers - Sensory ...

I would do the bullet list with your son's specific experiences. The checklist could help you with that. I would also have copies of your bullet list and checklist that the evaluator can take with them.

Edited by Emmeline II - 4/18/11 at 2:01pm

[Drummer's Wife]

Just wanted to say I'm glad you made the call.  I think that's the hardest step.  You'll be happy you did - even if nothing comes out of it, it will bring you peace of mind.  If they do recommend services, it will be a relief to have them started instead of taking the wait and see approach.  Keep us updated. 

[Emmeline II]

Originally Posted by Drummer's Wife 

Just wanted to say I'm glad you made the call.  I think that's the hardest step.  You'll be happy you did - even if nothing comes out of it, it will bring you peace of mind.  If they do recommend services, it will be a relief to have them started instead of taking the wait and see approach.  Keep us updated. 

[LynnS6]

I think a written list of your concerns is a great idea! I wish I had done that when we had ds evaluated for his stuff. (His stuff was minor, but I still forgot things.) You can even give it to them if you don't get a chance to get all your questions asked. They won't think it's silly and they'll probably appreciate having it.

[joensally]

Good for you!  Information is great - it's scary at first, but I've always felt better when I have names and strategies for what's happening.

This is an online version of a commonly used screening tool (Ages & Stages).  If you complete it, don't take it as definitive - it requires interpretation and it's only a starting point to indicate which roads to investigate further.  But it will give you a tool to think through the types of things you may be asked or want to share.

http://www.asqoregon.com/

[BeautyforAshes]

No professionals are going to laugh at you.  It's nerve-wracking to have strangers evaluate your child (at least it was for me), because I felt like I was responsible or that it reflected on me, somehow.  (I have trouble with social anxiety, as well.)  Just remember that their job is to HELP you and your son and to provide you with information about what your best course of action is.  Try not to stress over it so much (I know, easier said than done!)  They aren't there to criticize your parenting or to give you the third degree.  I would agree with all the pp's about making a list of the biggest concerns you have, and maybe a couple of specific examples for each, as well.  (This may help make sure you don't draw a blank if they ask you for examples on the spot.)  You didn't say who will be doing the initial evaluation.  If it's a general intake-type evaluation by your service coordinator, the questions may be slightly more open-ended.  If it is an evaluation done by a therapist, the questions will be detailed and specific.

[crunchy_mommy]

Thanks guys!!! I really hope that I'm able to accurately explain what's going on... I will make a list. And I do think I will feel better knowing that even if they can't help him, I tried.

One other question... are they going to be... um, disapproving... of him still nursing & co-sleeping? Will they ask anything related about that? Is it OK to tell them? I guess that's the other thing I'm nervous about... I don't share those things with anyone except close friends...

[christinelin]

My DS was still nursing at 5 years when he was evaluated. The psychologist was very professional and matter-of-fact about it during the evaluation process. We discussed it again when I did some individual therapy with her and she was more up-front that she doesn't agree with it. I don't think she would ever say she agrees with extended nursing, but I think she eventually understood it. I think there was clearly a huge regulatory piece for my DS. I hope the folks you see are appropriate about it.

[BeautyforAshes]

I would be honest about the nursing and co-sleeping, if asked.  From my experience, I would guess that they might not be in agreement, but would expect that they would be professional about it.

[Peony]

I've done multiple evals (private) on DD1 over the years and my almost 2y gets services through EI right now. I've always been upfront about our sleeping and nursing habits. DD1 was nursed until she was almost 4 and just moved into her own room this month, she is 8. DS is still BF and co-sleeps with me, I nursed him during the EI eval. Nothing was said about it. When it comes up, I tell them what we do, and that I don't see it as a concern. With DD1, I was always praised for nursing her so long from the various centers she went to. DS usually nurses at least once during his services, speech and some PT, his therapists love it. 

[pranava]

Hi Crunchy_mommy!  I'm right there with you.  DS has different issues from your DS, but EI is coming for the evaluation on Wednesday.  My concerns are mostly motor skills and adaptive skills like self feeding and taking clothing off and such.  I am a little nervous because I think my daycare provider suspects Aspergers.  I'm not sure about that.  I like the idea of a list of concerns and will definitely get that together before the evaluation.  I'm trying to come at it with the attitude of - I want to do everything possible for DS to live his best life possible.  The earlier the help, the better the outcome. 

My nephew had some speech therapy through EI and it was wonderful for him.  He loved it and progressed so much.  I hope your DS has the same positive experience.  I'll keep you posted on how our eval runs so you know what to expect.

[crunchy_mommy]

Thanks pranava, and good luck Wednesday!! I love the way you said it, "I want to do everything possible for DS to live his best life possible." Definitely let me know how it goes!!

[physmom]

hey, I just wanted to chime in that I'm glad you're seeking out EI and I hope you post how it goes!  Dh is supposed to be finding an OT today (we don't think there is such a thing as EI locally?) and hopefully calling them to set up an appointment for DD. 

[crunchy_mommy]

Originally Posted by physmom 

hey, I just wanted to chime in that I'm glad you're seeking out EI and I hope you post how it goes!  Dh is supposed to be finding an OT today (we don't think there is such a thing as EI locally?) and hopefully calling them to set up an appointment for DD. 

Oh good, I hope you find someone and let me know how it goes as well!

The appointment is on Thursday so I will update later in the week (not sure we'll get a whole lot of info at the first appointment anyway -- we have a 2-hour followup in a couple weeks so I would imagine that would be more informative (though I really have no clue!)

DH and I made lists of all the things that concern us... It's not a huge list or anything, but it sounds a lot worse on paper than it did in my head, so I'm not sure what to expect...

[physmom]

Originally Posted by crunchy_mommy 

Originally Posted by physmom 

hey, I just wanted to chime in that I'm glad you're seeking out EI and I hope you post how it goes!  Dh is supposed to be finding an OT today (we don't think there is such a thing as EI locally?) and hopefully calling them to set up an appointment for DD. 

Oh good, I hope you find someone and let me know how it goes as well!

The appointment is on Thursday so I will update later in the week (not sure we'll get a whole lot of info at the first appointment anyway -- we have a 2-hour followup in a couple weeks so I would imagine that would be more informative (though I really have no clue!)

DH and I made lists of all the things that concern us... It's not a huge list or anything, but it sounds a lot worse on paper than it did in my head, so I'm not sure what to expect...

Thanks, and I will! I have no clue what the wait times here are like so I'm hoping he makes the appointment today.  We need to sit down a make that same list. I found a local group online for SPD so I'm going to check that out and see what they recommend also.  I just now figured out what SPD was in Portuguese (DH didn't have a clue either) so that will make looking for info a lot easier!   I tried out the link Joensally posted and it said we should get DD checked out for her social-emotional development....
 

[pranava]

Sorry for the delay!  I've been so busy.  DS had an evaluation by EI yesterday.  We had the follow up appointment immediately afterward because it's so hard for me to get a day off work.  It went really well and we all felt very comfortable.  We are a same sex couple and that was a total non-issue for them, so I don't think you should worry about the nursing and co-sleeping.  Those questions never even came up for us.  There were two ladies there to do the evaluation.  One was working on fine and gross motor things, so she did most of the playing with DS.  And it was really just playing - stacking blocks, puzzles, toys he could open/close/shake.  She watched him walk, run, and try to jump.  The other lady was looking for social, language, and cognitive skills.  She asked more questions of us as the parents - things like does he recognize local businesses, does he play pretend.  It was great, and in the end they were able to tell us his strengths and weaknesses.  He qualified for both physical therapy and occupational therapy once a week.  We're in the process of setting that up now.  I'm glad that I finally called and that DS will have the opportunity to improve on his weaker skills so he can keep up with the rest of the kids on the playground :)

I hope your experience is just as positive!  Good luck!

[physmom]

Originally Posted by pranava 

Sorry for the delay!  I've been so busy.  DS had an evaluation by EI yesterday.  We had the follow up appointment immediately afterward because it's so hard for me to get a day off work.  It went really well and we all felt very comfortable.  We are a same sex couple and that was a total non-issue for them, so I don't think you should worry about the nursing and co-sleeping.  Those questions never even came up for us.  There were two ladies there to do the evaluation.  One was working on fine and gross motor things, so she did most of the playing with DS.  And it was really just playing - stacking blocks, puzzles, toys he could open/close/shake.  She watched him walk, run, and try to jump.  The other lady was looking for social, language, and cognitive skills.  She asked more questions of us as the parents - things like does he recognize local businesses, does he play pretend.  It was great, and in the end they were able to tell us his strengths and weaknesses.  He qualified for both physical therapy and occupational therapy once a week.  We're in the process of setting that up now.  I'm glad that I finally called and that DS will have the opportunity to improve on his weaker skills so he can keep up with the rest of the kids on the playground :)

I hope your experience is just as positive!  Good luck!

pranava that's great that everything went so smoothly!  I hope that physical therapy and OT help him out and that he enjoys it. 

crunchy_mommy, how did the EI evaluation go?

It looks like we're not going to be able to see an OT anytime soon.  DH called and talked to them yesterday and he needs some special card from his work to go to the one OT that is covered by our insurance and he has no clue when he'll get that.   There IS an absolutely wonderfully looking OT clinic in walking distance of where we live (and it specializes in SPD in children!) but it's not covered by our insurance.  We will get some of it reimbursed but it would still probably be about R$200 a visit, which we definitely can afford now.  So we're going to wait until DH gets his card and try to go to that OT even though it's over an hour away.  Then once I finally start getting paid we can try the one nearby (if the first one thinks we need services).

[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!!)