Developmental assessment when a baby is tired
June 22, 2016 4:19 PM   Subscribe

I had some concerns about my 7-month-old not meeting his gross motor milestones, and I set up an evaluation with our state's Early Intervention program. The team was late and by the time they showed up at our house, my son was way overdue for his nap and very tired; when the team was done, my son nursed himself to sleep in about 30 seconds. The team agreed he had some mild motor delays, not enough to warrant services. But then the developmental therapist, who did her evaluation last and was looking at some combination of cognitive and fine motor skills, said my son was three to four months delayed. This came as a big shock, since we hadn't had any concern in those areas, and obviously worries me. While I wait to ask the DT who will be assigned to us, I'm hoping the hive mind can help me tease out what effects my son's exhaustion might have had on this evaluation. Specific concerns and questions are under the fold.

My son was born three weeks early -- a day earlier and he'd be classified as premature, so I frequently use adjusted ages. I called EI when he was just seven months, six and a half adjusted. I called because my son wasn't rolling consistently or pushing up on his arms, wasn't making real attempts to feed himself when we were doing baby-led-weaning, and was only getting raspberries out when trying to babble. None of my son's other caregivers had any concerns about him at all, but several people said to call EI if only to get reassurance that everything was ok.

In the roughly three weeks since I made the call, my son has learned to babble with multiple different consonants (including repeats like ba-ba-ba), learned to very intentionally roll over front-to-back, started pushing up after I helped him for a few days, and learned to stand holding himself up on furniture. He's still not very interested in putting food in his mouth (although he's done it occasionally), but he's also got about six teeth coming in. He sits well, he plays with toys (including mouthing them), he's incredibly social. So everything I was worried about that had prompted me to make that call is no longer an issue.

The EI team that did our assessment was a bit rushed, and I didn't think what questions to ask at the time, but I think the areas my son failed had to do with problem solving -- looking to see a toy that had dropped, reaching out to get a toy, that sort of thing. These are behaviors that I know my son does -- I've watched him a lot in the past few weeks. But he only does them when he's alert and motivated. When he's a little tired, like if it's close to nap time, he doesn't seem to care if a toy drops or disappears.

The one other thing that I know he didn't do was respond to his name. After the team left, I realized that we had almost never tried to get my son's attention by calling his name (mostly because he's almost always already interacting with us and paying attention to us if we are present.) So that day I practiced calling his name and smiling when he looked to me, and within an hour he got it and now reliably looks when his name is called.

I've tried filling out parent screening tools I could find online -- like the Ages and Stages Questionnaire -- and he does fine on those, apart from being a bit in the gray zone for gross motor skills.

Soo... I'm waffling between "ohmigod a 50% delay that's a really big deal" and "he's fine, obviously the test caught him at a bad time and that's what you'll find out when the DT comes", and I thought maybe metafilter could tell me something useful. Here are how my questions boil down:

Is it reasonable to suspect that the assessment could have greatly overstated my son's delays, given his exhaustion?

Is it worth seeking a second opinion, or should I just go with the flow and get the services? Early Intervention services will not be even close to free at our family's income level, so I would like to get this one right. We do have good insurance, so probably paying for a private evaluation would be similar in cost to one month of EI services.

If we should get a second opinion, how can we go about doing that? In particular, will the DT and/or OT assigned to us, who probably will not be the ones present at the evaluation, be able to give us a good sense of our son's status, or should we be going through e.g. our pediatrician? (We haven't gone that route so far because our pediatrician is hard to reach and about to leave the practice, so we need to find a new one anyway.)

Thank you for all your help!
posted by wyzewoman to Health & Fitness (18 answers total)
In some states the early intervention is very good. In some states it is not and many parents with resources go the private route. And parents with resources may also go for private therapies. It might be worth talking to your (new) pediatrician about a private evaluation.
posted by k8t at 4:24 PM on June 22, 2016 [1 favorite]

I work in child development. I do not work in early intervention, but the children I work with are often involved in EI/ECSE services. Also my job is developmental assessment of kids.

The reliability of the results of the assessment really depends on the measure that was used, as well as the skills of the individual that administered and interpreted the results. In my opinion, performance based testing for any baby under 24 months should be supplemented with informal observation and parent report for exactly the reason you shared: sometimes babies are sleepy, don't want to engage with strangers, or just don't GAF.

In the same vein - age equivalencies can be misleading at those early ages, since there is generally a HUGE spread of "normal" and saying something like "baby wyze is functioning at about a 3 or 4 month level" might be suggesting a level of impairment that isn't necessarily worrisome. My area is language development, so to give an example - a gross rule of thumb for a first word is 12 months. But research suggests that the range of normal is actually something like 7-18 months, with some data suggesting a first word as late as 20-22 months is still late normal. So while saying to a parent with a 16 month old who isn't saying mama yet, "your baby is 4 months behind" is TECHNICALLY correct based on gross developmental norms, it isn't necessarily suggestive of ATYPICAL development.

So I guess my suggestion would be to ask to see the detailed reports and see if that helps you out. If you're still concerned about the results, you can always schedule an eval with a private therapist in the area of delay that's concerning to you (eg: specifically with an OT, PT, or speech pathologist) to do a more comprehensive assessment. If he's passing an ASQ at 7 months, I (personally) would be inclined to just wait and see how he catches up between now and his 9-month WCC, but if your original area of concern was gross motor skills, and screening measures are borderline, then you may want to follow up with PT to look at that specific thing just to put your mind at ease.

Finally: my state is different, in that EI services are free, but the criteria for access is pretty high (delays of at least 2 SD below the mean or delays across multiple areas). If your state charges for EI services, then they might have looser eligibility criteria.

(as an aside: you really don't need to be correcting your baby's age. 37 weeks is term; there's normal variability in gestational time just like there is across all human development. Calculating for prematurity when you're not actually premature just fudges a couple weeks anyway and doesn't make any difference at all given the huge range of normal).
posted by lilnublet at 4:57 PM on June 22, 2016 [17 favorites]

I personally would wait a few months and see if I still had concerns, and discuss it with my pediatrician at my next regularly scheduled visit.

FYI, in my state EI is free regardless of income. Perhaps not true in yours, but just in case you were assuming greater expense than it actually would be for you.
posted by metasarah at 4:58 PM on June 22, 2016

Hi there - I have a 21mo old and permission from this internet stranger mom to go with "he's fine, obviously the test caught him at a bad time". Their little brains have so much going on... he nursed to sleep in 30 sec? When my 21mo old is that tired he'd fail those tests too - not equivalent age appropriate tests but those exact same things. He doesn't care about dropped toys, doesn't respond to his name well, etc. In fact, that's partly how I can tell he's tired, and how tired, he is. He fell asleep that quickly last night, in fact - I got him dressed while he nursed and he barely woke up. Respond to his name? Look for toys? Forget it.

If I were so tired I could fall asleep that quickly I'd fail those (and probably any) test too. Exhaustion and sleep deprivation are serious issues for adults - no reason why it wouldn't similarly effect little kids.
posted by jrobin276 at 5:20 PM on June 22, 2016 [1 favorite]

The state is IL, city is Chicago, and our state does charge for EI on a sliding scale. I don't have a good sense of the quality of the program here overall (although I know recent budgetary issues have caused many therapists to leave the program), but I have been given a name of an excellent DT who works through the program and who has availability next month, and will request her when my coordinator calls me back.

Thanks for the feedback about adjusted age. Part of my difficulty is that so much of the information about development that is readily available online doesn't include numbers for standard deviations. I teach statistics, I would know how to use this information to figure out when, for example, three weeks makes a difference -- but most of the norm tables appear to be closely guarded by the people developing the assessment tools. (grumble grumble) I've been using the adjusted age because it calms me down when considering the differences between baby wyze and his older brother, born at 41 weeks -- but I'll stop now. :-)
posted by wyzewoman at 5:34 PM on June 22, 2016 [1 favorite]

Awesome! Even more reason to request the assessment reports! The data from the tests will be presented as standard score or percentile ranks!
posted by lilnublet at 5:59 PM on June 22, 2016 [1 favorite]

Just thinking pragmatically, if a second assessment costs the same as a month of EI, why not just get a month of EI? Would those therapists be able to let you know whether the therapy should continue after spending a month with your baby? (I'm just a random parent, so, grain of salt.)
posted by slidell at 6:13 PM on June 22, 2016 [1 favorite]

I think your first step is to find a good pediatrician and let them quarterback this. With such subtle delays waiting a month to start therapies is not a big deal. In the meantime schedule an appointment with an actual developmental pediatrician - not sure what a "DT" is, but for a second opinion I'd go with the real thing. It can take a while to get the appointment. If you chose a pediatrician practice connected to a children's hospital they might be able to get you in earlier.
posted by yarly at 7:16 PM on June 22, 2016

HI! My child was in early intervention from a few months to about 20 months due to structural and genetic issues. You don't have to qualify if you have those issues, so evaluations were really low pressure.

In my experience, the tests are mostly based on your responses as the parent. Maybe there are 20 cognitive things on the evaluators list. And she asked you the first eight and you only said yes to two. Ok now the therapist is going to come to your house with a similar list. And you can ask for a copy. Now you have a work list and a professional to help you work on it. It's basically exactly like you described. Oh, baby maybe should be responding to his name. And you work on random fun skills until you and the therapist are sure baby is meeting milestones on that skill area. And then your kid graduates from early intervention.

Doing the therapy may be the fastest, easiest way to make sure your baby does not have a delay. Plus it's kinda fun and the therapists are usually great ladies to spend an hour with. You may also request skills from other areas (in my experience) and see if baby is meeting the milestone list there as well. These lists are widely distributed and your therapist didn't generate them herself, so I'd trust them.

I'd just do the therapy if it's the same price. I realize it's scary to even consider your child may have special education needs. But starting the therapies will help your kid if they need it AND help you figure out if they need it. It's a win win.
posted by Kalmya at 7:38 PM on June 22, 2016 [3 favorites]

I'll echo jrobin276 above - my daughter's performance on various evaluations was strongly affected by how tired she was... not to mention how shy she was feeling on a particular day.

One thing that can be useful is taking videos with your phone or camera of what your child can do when they're well-rested and comfortable and showing that to various therapists or evaluators as appropriate. In my experience, evaluators typically give less credence to a parent's report than to something they see with their own eyes.

I'll also mention that all of the appointments that can come with intense early intervention can turn into a stressful whirlwind. Looking back, I sometimes question whether the stress did more harm than the interventions did good. A couple of them turned out to be incredibly useful, but I probably could've been more choosy.
posted by clawsoon at 7:38 PM on June 22, 2016

My son was also 3 weeks early (actually 3.5), and small even for his gestational age. He slept through the night at 3 weeks, so I thought he was going to be a prodigy. But he hit every single developmental milestone more than a month late, slept much more than my other baby had done, and was 5%ile for most of the first year. He grew only a couple ounces for two months near the end of the first year.
He also had fairly chronic ear infections that first year.
Anyway, I was scared too, and tried to get him evaluated, but the doctors assured me he was entirely within the normal range. Just as there are babies who walk at 7 months, there are some who don't walk until 18 months (that was mine :). They did test him for cystic fibrosis (if you kiss his tummy, and taste salt, that's a sign of this). No go, fortunately.
He was always a bit slow-- his teeth were late coming in, and later I learned this was a symptom of thyroid issues (but he didn't have that either). The one problem that was clearly a real issue was the chronic ear infections, which continued until he was 10 or so.
Anyway, he was always a bit behind, but as he got into toddler age, I realized... to some extent, he was just stubborn. He probably could have walked before 18 months, but... he didn't want to. Personality makes a difference even with babies! But he too was unable to "perform" when he was sleepy or distracted. He didn't talk really until he was 2.5, but stubborn as he was, I think it was because he didn't think anyone was worth conversing with.
So-- long story short-- he was never completely typical, tended to hit especially physical milestones late, and was always tiny. But now he's 20 and in college and around the 50%ile in size, and he's really just fine. Still sleeps a lot, and has occasional ear infections!
I do remember feeling like you-- both worried and defensive. But your baby sounds like a wonderful little guy, and maybe he's just taking his own sweet time. As you said, when you worked to teach him his name, he picked it up right away, which indicates he can hear well (so probably not ear infections!) and he's alert and can pay attention.
It's hard not to worry. But you know him best. If you didn't have that book with the milestones and relative ages, would he seem okay to you? He sounds like a real charmer to me! You might have him checked for mild illnesses like those ear infections or allergies. (That is, if there's a problem, it's likely to be an illness more than a real delay. Hard for a baby to concentrate with low-level irritation or pain all the time.) But it sounds like he's doing everything, just a bit late, right? Then it's not really late. It's just on his own time. Try and enjoy him now. When he's two, if he's still behind a few months (boys are usually slower than girls with speech and fine motor skills, remember), then's the time for evaluation.
But what you describe-- that he's behind, but then there's a kind of flurry of advancement- sounds within the usual spectrum. Give him a kiss for us-- he sounds like a lovely boy.

posted by my-sharona at 9:26 PM on June 22, 2016

A friend of mine did early intervention about 14 months I think) for speech and it was really all very low key and non-intrusive. Also, now he is well within norms. She'll never really know if he needed it or not but at the end of the day it didn't really matter to her. This is one way to think about it, as long as the intervention is similarly non-intrusive/demanding.
posted by jojobobo at 12:29 AM on June 23, 2016

The cognitive tests for infants are tricky, because they depend a lot on fine motor skills since babies can't talk. My son was evaluated on a standard Bayley test at 10 months old, and was found to be significantly globally delayed -- gross motor, fine motor, AND cognitive were all at the level of a 4-6 month old.

The gross and fine motor delays were real; he's been in EI for them ever since, with stunning success. The cognitive? Not so much. He starts kindergarten next fall and he's reading at a second grade level, doing simple addition and subtraction, and can explain Newton's laws of motion in his own words. He has his struggles, but cognitive delay is not among them.

Keep your eye on it, obviously. And yes, the DT/OT will have a lot more opinions on that because they will see your child under much more varied and normal circumstances. But I wouldn't be too worried unless you get a lot of new, concerning evidence.
posted by KathrynT at 1:29 AM on June 23, 2016

Thanks for all the incredibly helpful and reassuring responses so far. I'm feeling much better! (And, yes, I gave my son some extra kisses for y'all.)

I just sent an email to our current pediatrician, describing the situation and asking her to recommend a developmental pediatrician. I love yarly's notion of having somebody to quarterback the situation. In the meantime, I will let the EI process go forward, knowing that the therapy can be fun and can't hurt anything, at least while we're figuring out what's going on.

I also just set up a vision screening for my son. I've long had a niggling feeling that maybe he's not seeing small objects, and that this might influence how he's interacting with toys. This solidified this morning when I tried putting some chocolate bunnies on the table in front of him, hoping he might try to put one in his mouth. He didn't respond to them at all, even when I waved them in front of his face, but he kept trying to get at the bag. There is a free national program called InfantSee, which offers screenings to babies from six months to one year, and they made me an appointment for today.
posted by wyzewoman at 7:51 AM on June 23, 2016 [1 favorite]

I'll more anecdotes from another state, where early intervention is offered without charge to parents. We have two boys, one heading into Kindergarten in the fall, and the other just turned 18 months old.

The first was a late talker, late walker. He got support for a few months, until he was almost 2, and it was a great help to him. Now he'll correct you on the pronunciation of dinosaur names, and talks non-stop. He used to get frustrated at his lack of abilities with fine motor skills and couldn't jump, but that's all behind him now, too (except some of those frustrations, but I think that's just who he is). His brother is a lot more physical (it helps that he has a big brother to chase and mimic), but is a bit behind the curve for verbal skills, so he has started EI, too.

We were directed to EI by our pediatrician, so with that, the scores from the tests, and the fact it was free, we were happy to start.

If the cost for EI isn't too much and they can work with your schedule, I would say go for it. I can understand that you get worried when you hear your child is behind the mark for normal progression, but even if they tested poorly, EI won't hinder your child, and is likely to help.
posted by filthy light thief at 9:29 AM on June 23, 2016

Mood, tiredness, random unknowable factors all have a big impact on how kids act, especially in new settings and scenarios with new people. We had a similar experience with an OT eval for our 5-year-old son that rocked us for about a month. But then a different OT saw him for several sessions and basically told us she saw none of the issues in the initial evaluation report. So, you know, he had a bad day when he was evaluated. It happens.
posted by that's candlepin at 11:08 AM on June 23, 2016

I have a premature daughter (15 weeks early) who had developmental delays due to prematurity and received early intervention services until she aged out of the program, and a term son who is just a slow starter. Nothing you have described gives me any cause for concern.

My daughter didn't walk independently until after two (21 months corrected) or talk until 22 months (18 months corrected). At almost four, she still can't jump or climb stairs properly. Early intervention was amazing and awesome in helping her accomplish those things (it is free and well-regarded in my state). Every milestone my daughter achieved has been through the hard work and repetition of therapies taught to us by early intervention therapists.

My son didn't roll over until almost eight months of age, didn't have any words until about 17 months, didn't take a step until 15 months, didn't feed himself until at least ten months. He was given plenty of tummy time and other opportunities to do those things (we also did baby-led weaning) and just, you know, couldn't be bothered with doing those things at the median typical age. He was on his own timeline. It is ASTONISHING how easy those things came to him when they did come, though. My son just watches his sister and absorbs how to do it and then when he wakes up ready to do it, he does it. Given your child's recent accomplishments, I think he is pretty typical - a lot of nothing happens, and then a lot of something happens (also note that skills typically come in spurts by type - lots of fine motor, or lots of gross motor, or lots of language or cognitive, and then a lull in those areas while they work on something else).

Did the EI evaluators use or provide you with a copy of the HELP (Hawaii Early Learning Profile)? I really liked this chart because it does a very good job of showing the range of normal for a particular skill. No child is going to hit the early mark for every milestone; many children will not hit the early mark for ANY milestone. Baby Center and the Wonder Weeks seem to treat the earliest common time for a given skill as the average ("By now your baby might [be doing thing that only 1% of babies actually do at this age]..."). Don't let that particular worry catch hold of you; a baby's first year is an INSANE amount of growth and change and development. My daughter was very clearly at risk due to her prematurity and ongoing medical concerns, but it never occurred to me to call EI for my son. Even when he wasn't rolling or walking, I could see incremental progress, and at times I knew he was capable of doing something and simply wasn't doing it for whatever reason. He could have walked/toddled months before he did in terms of strength and balance, but he just would not let go of the couch. When he did start walking independently he went straight from individual jolting steps to a smooth baby walk/jog within three days. It's like he'd been playing the Silent Piano all that time, figuring out how to do it but waiting to do it until he could do it right. A huge benefit of this is that I have never had to deal with him being a baby who could roll one way but not the other, or who could pull to stand but couldn't sit back down. He waits until he's pretty sure he's got it before he attempts it. It would not surprise me if he goes from "mama" to diagramming sentences in the span of a weekend, given his track record.
posted by peanut_mcgillicuty at 8:22 PM on June 24, 2016

Update: it tuns out that my son had a case of iron deficiency anemia. This was causing both a mild gross motor delay (because it was too tiring to move his muscles and practice All The Things), and the appearance of other delays (because he was frequently zonked out, including at his EI evaluation). On literally the third day after starting mega supplementation, my son's activity level nearly doubled and has stayed that way ever since.

To be safe, we had him re-evaluated by the same types of therapists who had initially seen delays: a physical therapist (through our insurance), an occupational therapist (who was a friend), and a developmental therapist (sent by the EI program, finally, two months after the initial eval.) All said that he was perfectly fine.

I wish we'd caught this anemia earlier. Apparently babies get a lot of their iron stores during the last month of pregnancy, so babies born early are at a higher risk of iron deficiency; perhaps if my son had been born a day earlier, and thus counted as premature, we'd have known to look out for it. As it happens, we only found out because our practice routinely screens babies for iron at their 9 month visits.

However, all's well that ends well. Thank you metafilter for lessening much of my anxiety during this period (and for your tips on getting the iron into the baby!)
posted by wyzewoman at 3:52 PM on August 3, 2016 [1 favorite]

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