Requesting an EI eval? Should I?

[crunchy_mommy]

I've been toying around with this idea for a while but I'm thinking of finally taking the plunge & requesting an EI eval for DS.

He's 21mos & something just doesn't feel right to me. He's always been high-needs/intense (since the day he was born) and I don't know that it's just something he'll grow out of... In fact I recognize a lot of myself in him & I hope I can help him avoid some of the long-term problems I've faced...

He doesn't eat well (still 70-90% breastfed, and nurses many many times a day) or sleep well and he is incredibly noise-sensitive. Whether it's a fan or the furnace kicking in or a truck/airplane off in the distance, there is always some noise that scares or upsets him. Yesterday he wouldn't walk into a public restroom because of the vent noise. At the same time, the right kind of noise (i.e. singing certain songs or certain white noise) is one of the only things that calms him. He has issues with transitions & he is picky about clothes (won't wear coats or blankets and will only wear socks if he's also wearing shoes). Everything has to look a certain way (he gets mad if I put on a scarf, or insists DH wear a hat & sunglasses in the house all evening) and he freaks out if the sun is bright. I suspect there's some other sensitivities going on as well, and it seems like it really interferes with his (and my!) life -- he is constantly clinging to me, he takes so long to feel comfortable in any given situation (finally warms up as we're about to leave), he doesn't interact or participate in activities like activity groups, playground, free play, etc. unless I'm literally right there physically guiding him through each action, and even then he tends to resist. He often just seems to withdraw & would rather read all day than do anything else. However if we provide just the right kind of stimulation at just the right time (and this is hard to pinpoint of course) then he CAN be happy & content for minutes, hours, sometimes even most of the day. I took him to a music group this morning & literally moved his body through the motions and all afternoon he was happier than I've seen him in a long time. It occurred to me that the 2 other times he's gone to a music group the same thing happened (it also occurs to me now that it's pretty sad that I can pinpoint only 3 times in 2 years that he's been truly happy & 'normal' for any length of time).

So I don't know why I'm posting, maybe just looking for encouragement (or discouragement if appropriate!) to take the next step & request an eval?? What do I say? I also want to make sure if I do go ahead with that, that they take me seriously -- he is meeting major milestones, ahead in many areas in fact, and not losing weight or anything (due to the incessant nursing!), so I'm worried they'll just laugh me off & ignore the fact that he won't eat, won't play, won't socialize, etc.

[LynnS6]

I'm a firm believer in trusting your momma instinct. It sounds to me like your son has some sensory issues. Have you ever heard of sensory processing disorder? My son (and my dh) havee it, and many of the things that you describe made me think of that -- trouble with solids (often a texture issue and/or a motor + texture issue); oversensitive to some sounds, but craves others; is calmed/grounded by large motor movement, but doesn't seek it out; doesn't follow along in group settings but 'freezes' and withdraws.

You can tell the EI people what you've said here:

He's not eating solid foods well (they'll probably see that as a bigger deal because most babies aren't breastfed that long, so they'll worry about nutrition).

He seems to be uncomfortable and unhappy a lot of the time, and is very very difficult to soothe

He overreacts to environmental stimuili

Some of this might just be your son's personality (if he's an introvert and slow to warm up, he's going to take a long time in groups). But I found that our ds did not participate at all in group stuff because he could not figure out how to make his body do what the teacher was doing. In addition to (or as part of? it's never been clear to me) his sensory issues, he's got some dyspraxia, i.e. difficulty with motor planning. I remember one photo session when he was ~5 when the photographer kept trying to tell him how to stand, and ds just didn't get it. The photographer had to go physically move ds.

If EI doesn't find anything they can do, I'd see if you can get an evaluation by an occupational therapist trained in sensory problems. Occupational therapy did wonders for our ds. He did OT for 2 years between 5 and 7. He's still an introvert, but his motor planning skills are now within the 'low-normal' range. He can tolerate sounds (though public bathrooms were an issue until he was 6 and had been in OT for a year -- the toilets that sound like they're exploding + hand dryers were too much). He can focus some of his energy on social interaction rather than monitoring his world for sensory stuff. He never had eating issues, but did have tactile, sound and motor planning issues. I can't tell you what a delight it was to see him participating in his first ever 'musical' during our church drama-music camp this year. He actually sang out loud and did the dances. I don't think he'd have been able to do that without OT.

Websites that I often refer to are:

http://www.spdfoundation.net/

http://www.sensory-processing-disorder.com/

My two favorite books are:

Sensational Kids

The Out of Sync Child

[crunchy_mommy]

Wow ironically I *JUST* picked up Sensational Kids from the library & started reading it last night! A lot of it really does resonate (though I'm only partway through), though  it's hard to tell how exactly SPD would show up in a toddler as that book seems geared more toward preschool age & up... I don't know how much 'sensory issues' are a problem for the average infant/toddler -- by that I mean, are sensitivity to noise, difficulty with motor planning, etc. just things that most toddlers deal with & we happen to be on the more extreme end? I do think requesting an eval might help me figure out how to deal with it, if they don't see those things as major issues then I'm not sure where we'll end up, I'm sure I'll end up feeling kind of invalidated & at a loss for how to help him but if they do see the issues then hopefully we can get some OT & get him feeling more comfortable in his own skin!!
 

It's so weird that all my life I though I just had really extreme anxiety (and I do) but reading about SPD makes me wonder if that's what was at the root of my problems. I am super-sensitive to background noise so I know I have great hearing but I have to blast the TV to understand what's going on... I can't follow conversations in restaurants or large groups & I get easily overwhelmed when I can't figure out how to make my way through a crowd. Excess visual stimuli drive me nuts... I can't stand light touch & am picky about how my clothes feel, and the texture of foods, and have no use for food that's not heavily spiced. My entire life I've withdrawn into books or the computer because those are two of the only things that help me shut out the world around me. I can't even stand having music or the TV playing in the background & I will not go to theaters or stadiums or other busy, noisy places. I've always felt frustrated & stupid when I couldn't follow what was going on & keep it together when I'm in those kinds of settings. So anyway, I could go on forever, but the point is, a lot of that, I see in DS, and I definitely don't want him to grow up feeling like he's stupid because he can't participate the way everyone else can, can't avoid shutting down & withdrawing...

[crunchy_mommy]

I forgot to ask, since from what I can gather, EI is a gov't sponsored/mandated program, would I be likely to run into issues because we are extended nursing, co-sleeping, etc.?? Maybe that's a dumb question, I guess I'm just trying to figure out if it makes more sense to try to handle this privately (don't go through EI) or something, though don't know if we could afford that, but I'd hate for someone to tell me to stop nursing him (when nursing is likely the only reason he's not on a feeding tube or something!) or giving us a hard time about other choices we've made. I'm a bit paranoid & have not historically had very good luck when it comes to the medical community...

[LynnS6]

They shouldn't care if you're breastfeeding or cosleeping. There are plenty of other families on this board who've done the same. They might care more about vaxes, but if you've got concerns about his development, they probably would understand 'delayed' vaccination. After age 3, he'll be handled by the local school district, if you choose to seek services/still need services. So EI won't know if you're delaying vaccination forever. However, if it's 'just' SPD, your son may not qualify for school district help, though I think that EI is better about it.

Given what you've described about yourself, you might want to look into auditory processing disorder.

This is a checklist for infants/toddlers that might be helpful. http://www.sensory-processing-disorder.com/SPD-symptom-checklist-for-infants-and-toddlers.html

It's important to note that you don't have to have every symptom to be considered to have SPD, and that children can be sensory avoiders in one area (for example food/oral textures) and sensory seeking in others (movement, for example). That often confuses parents because sometimes it looks like there's not a clear pattern of symptoms. Our son, for example, was extremely hypersensitive to sound and touch, but he's undersensitive to pain. He had strep throat about a month ago, and we only took him to the doctor because he'd had a fever for 5 days. He said his throat 'kind of' hurt! (Dh's the same way. He walked 5 miles on a broken foot once.)

[KimPM]

Originally Posted by crunchy_mommy 

I forgot to ask, since from what I can gather, EI is a gov't sponsored/mandated program, would I be likely to run into issues because we are extended nursing, co-sleeping, etc.?? Maybe that's a dumb question, I guess I'm just trying to figure out if it makes more sense to try to handle this privately (don't go through EI) or something, though don't know if we could afford that, but I'd hate for someone to tell me to stop nursing him (when nursing is likely the only reason he's not on a feeding tube or something!) or giving us a hard time about other choices we've made. I'm a bit paranoid & have not historically had very good luck when it comes to the medical community...

Sounds a LOT like my DS.  Sensory issues - Sensory Processing Disorder (SPD), used to be called Sensory Integration Dysfunction (SID).  Feeding problems - my DS has extreme texture aversion.  Totally sensitive to noise.  Never seeming to be happy or comfortable.

I first called EI and they did an evaluation, no problem.  It sounds like your DS has similar issues, so there should be no problem calling EI and getting an eval at least.  In our case, EI ended up finding delays (not feeding at their developmental age is counted as a delay in self-care abilities).  The other sensory stuff can be handled by an OT (occupational therapist) if they end up finding delays enough to serve him.  They probably won't provide services for just sensory issues alone.

Some of the EI therapists had their opinions about BF-ing and cosleeping, etc.  Some of them even though it was part of the problem.  Going into it, I was certain none of those things had anything to do with my DS's issues, so I didn't let them sway me on any of it.  I didn't offer the information about cosleeping, until they asked.  I told them about the BF-ing because that's how he was getting all his nutrition.  In fact, I believe that the extended BF-ing was extremely helpful in getting him the nutrition he needed.  And it turns out he has allergies, and formula or other replacements wouldn't have worked anyway. So, they MAY tell you to stop nursing, but just make it clear to them that you are not going to stop nursing until he is eating enough solid food that he wants to wean himself.  (This is exactly how it worked with my DS, anyway.)

The quality of the EI therapy can vary greatly depending on your local area and the exact therapist(s) you get.  Our EI therapists were not helpful at all, and after 1 year we ended up going to private feeding therapy with a carefully selected therapist.  We had great success with the private therapist.  It was costly as she was out-of-network, but well worth the investment.  I hope you have better success with the EI program.  I've heard some encouraging stories on here that EI has helped some families, so I know it can work for some children.  It's worth a try first, because if it works, then great!

A few years later now, and we've recently gone to Kennedy Krieger to get evaluated for ASD because as time progressed it became clear he fit into the spectrum somehow.  I'm not saying that's the case in your situation - it's entirely possible to have sensory issues and feeding issues and NOT be on the spectrum.  Just if you want to ever consider this kind of thing as an option - and I think Children's Hospitals also have evaluation centers as well.

Finally, it's great you've found that music helps your DS.  You should use music a lot with him, if that's what soothes him.  My DS REALLY loves music.  We got him a "SweetPea3" children's MP3 player and put music on there that he likes.  He's had that since he was about 2 years old and he just loves it.  He can choose the songs himself.  I'm amazed at how indestructible it's been.

http://www.sweetpeatoyco.com/